Community Psychology and

Community Mental Health

 Advances in Community Psychology Series
The Book Series of the Society for Community Research and Action

Series Editors
Nicole E. Allen
Bradley Olson
Advisory Board
Mona M. Amer
G. Anne Bogat
Meg Bond
M. Brinton Lykes
Ana Mari Cauce
Gary W. Harper
Niki Harré
James G. Kelly
Bret Kloos
Kenneth I. Maton
Roger Mitchell
Maritza Montero
Isaac Prilleltensky
Julian Rappaport
Irma Serrano-Garcia
Marybeth Shinn
Christopher Sonn
Cris Sullivan
Jacob K. Tebes
Roderick J. Watts
Tom Wolff
Books in the Series
Principles of Social Change
Leonard A. Jason
Community Psychology and Community Mental Health: Towards
Transformative Change
Edited by Geoffrey Nelson, Bret Kloos, and José Ornelas
Forthcoming Books in the Series
Influencing Social Policy: Applied Psychology Serving the Public Interest
Kenneth I. Maton
Community Psychology
and Community
Mental Health
Towards Transformative Change

EDITED BY
G E O F F R E Y N E L S O N,
BRET KLO OS,
and
JOSÉ ORNEL A S

1
 1
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Library of Congress Cataloging-in-Publication Data

Community psychology and community mental health : towards transformative change/edited by Geoffrey
Nelson, Bret Kloos, and Jose Ornelas.
pages cm
Includes bibliographical references and index.
ISBN 978–0–19–936242–4 (paperback : acid-free paper) 1.  Community mental health
services. 2. Community psychology. [1. Change (Psychology)] I.  Nelson, Geoffrey 
B.  (Geoffrey Brian)  II.  Kloos, Bret.  III.  Ornelas, Jose.
RA790.5.C636 2015
362.2′2—dc23
2014014463

1 3 5 7 9 8 6 4 2
Printed in the United States of America
on acid-free paper
 CONTENTS

Series Foreword by Nicole E. Allen and Bradley Olson  ix

Foreword by Julian Rappaport  xi
Acknowledgments  xiii
About the Editors  xv
About the Authors  xvii

PART ONE  OVERVIEW OF COMMUNIT Y

PSYCHOLOGY, COMMUNIT Y MENTAL HE ALTH,
AND TR ANSFORMATIVE CHANGE 

  1. Transformative Change in Community Mental Health: A Community

Psychology Framework  3
g e o f f r e y n e l s o n, b r e t k l o o s , a n d j o s é o r n e l a s

PART T WO  THEORETICAL PER SPECTIVES

ON TR ANSFORMATIVE CHANGE 

  2. Community Psychology History and Theory as Resources for

Transformative Change in Community Mental Health  23
bret kloos, josé ornelas, and geoffrey nelson

  3. Perspectives on Transformative Change in Community Mental Health  51

j o h n s y lv e s t r e

  4. The Capabilities Approach to Transformative Change in Mental Health  75

marybeth shinn

v
vi Contents

PART THREE  TR ANSFORMATIVE CHANGE

AND CONSUMER PARTICIPATION 

  5. Transforming Mental Health Care Through the Participation

of the Recovery Community  89
l a r r y d av i d s o n, p r i s c i l l a r i d g way, m a r i a o’c o n n e l l ,
and thomas a. kirk, jr .

  6. The Impact of Mental Health Consumer-Run Organizations

on Transformative Change  108
l o u i s d.   b r o w n a n d s u s a n r o g e r s

PART FOUR  TR ANSFORMATIVE CHANGE IN SERVICES

AND PR ACTICES 

  7. Wellness Recovery Action Planning: The Role of Wellness Promotion

in a New Paradigm of Community Mental Health  133
mary ellen copel and and jessica a . jonikas

  8. Defining the Competencies of Different Stakeholders in

a Transformed Mental Health System  152
t i m au b r y a n d m a r y o’h a g a n

  9. Planning Transformative Change for Mental Health Services

for Diverse Cultural-Linguistic Communities  177
g e o f f r e y n e l s o n, h s i a o d’a i l ly, j o a n n a o c h o c k a , r i c h j a n z e n ,
sarah maiter , and nora jacobson

PART FIVE  TR ANSFORMATIVE COMMUNIT Y CHANGE 

10. Recovering Community in Mental Health: The Contributions

and Challenges of Community Psychology  205
b r e t k l o o s , g r e g t o w n l e y, v i c t o r i a h .   c h i e n , b e t s y a .   d av i s ,
l au r a ku r z b a n, a n d d av i d a s i a m a h

11. Who Is John?: Community Integration as a Paradigm for

Transformative Change in Community Mental Health  228
mark s. salzer and richard c. baron
 Conte nt s vii

PART SIX  TR ANSFORMATIVE CHANGE

OF SOCIAL CONDITIONS 

12. Transformative Organizational Change in Community Mental Health  253

j o s é o r n e l a s , t e r e s a d ua r t e , a n d m a r i a fát i m a j o r g e - m o n t e i r o

13. Housing First and System/Community Transformation  278

pau l a g o e r i n g a n d s a m t s e m b e r i s

14. Supported Education as a Vehicle for Transformational Change

in Mental Health Treatment Philosophy  292
k a r e n v.   u n g e r

PART SEVEN  TR ANSFORMATIVE POLICY CHANGE 

15. Beginning to Take Control: Ontario’s Consumer/Survivor

Development Initiative  309
j o h n t r a i n o r a n d d av i d r e v i l l e

16. Recovery-Oriented Mental Health Policies: Implications

for Transformative Change in Five Nations  327
m y r a p i at a n d l au r e n p o lv e r e

PART EIGHT  CONCLUSION 

17. Transforming Research for Transformative Change in Mental

Health: Toward the Future  351
n e v j o n e s , j ay h a r r i s o n, r i ta a g u i a r , a n d l au r e n m u n r o

18. Transformative Change in Community Mental Health: Synthesis

and Future Directions  373
g e o f f r e y n e l s o n, b r e t k l o o s , a n d j o s é o r n e l a s

Index  389
 SERIES FOREWORD

The Society for Community Research and Action (SCRA), Division 27 of the
American Psychological Association, is an international and interdisciplin-
ary organization that supports the development of theory, research, and social
action. Members share a common interest in promoting empowerment, health,
and well-being, with special attention to multiple levels of analysis—individual,
group, organizational, community, cultural, and societal. Division members focus
on an array of pressing social issues within national and global contexts (such as
violence, mental health, HIV/AIDS, poverty, racism) and have developed effective
social interventions to address seemingly intractable problems using a continuum
of approaches from prevention to intervention to social transformation. These
approaches involve diverse strategies, including advocacy, citizen participation, col-
laboration, community organizing, economic development, prevention, education,
self-help/mutual-help, sociopolitical development, social movements, and policy
change. These change strategies typically share the goal of challenging and alter-
ing underlying power structures in the pursuit of social justice and community and
individual well-being.
This book series, Advances in Community Psychology, is sponsored by SCRA
to more broadly disseminate theory, research, and social action of community psy-
chologists and those in allied disciplines. The overarching mission of the series is to
create a publication venue that (a) highlights the contributions of the fields of com-
munity psychology and, more generally, community action, research, and practice;
(b) integrates current knowledge on pressing topics in the field; and (c) offers the
foundations for future directions.
All three dimensions of the book series mission is advanced in the current vol-
ume, Community Psychology and Community Mental Health: Towards Transformative
Change, edited by Geoffrey Nelson, Bret Kloos, and José Ornelas. The field of com-
munity psychology has a long history of addressing issues related to community
mental health. This volume’s editors have convened key thinkers and practitioners
who have long recognized that traditional mental health services are inadequate.

ix
x Series Foreword

The authors have accumulated and integrated the evidence on best practices, which
are all centered on collaboration among professionals and consumers and persons
who have lived with the challenges of mental illness. The book pushes the field
in new directions that promise to advance both scholarship and action, and it is
essential reading for anyone conducting research or collaborating on solutions with
community members. It encourages the reader to think in new ways about how
individuals, organizations, communities, and policy makers can better respond to
mental health challenges and work together to find more empowering solutions.

Nicole E. Allen and Bradley Olson

 FOREWORD

Since the onset of the modern version of community mental health (CMH) as
a recognizable field more than 50 years ago, when people like George Albee and
Marie Jahoda participated in a US President’s Commission on Mental Health and
Illness, it has been embraced as a revolutionary answer to the care and support of
people with mental illness. In the United States, our first attempt to revolutionize
CMH in the last half of the 20th century relied on the promise of a federally funded
national mental health movement. That promise was too dependent on political
will and public funds, an approach that did not account for changes in presidential
administrations and national priorities. Neither did it account for the intransigence
of mental health professionals, their professional organizations, and university
training programs. The approach was too reliant on “top-down” policy to succeed.
At the state level, the introduction of deinstitutionalization to both save money
and provide more humane care was predicated on the notion that alternative set-
tings, adequately resourced and operating with a very different ideology and a
different set of practices, would be created. With a few notable exceptions, these
alternative settings were not widely established (largely for reasons of politics rather
than science or best-practice evaluations). This failure of action by those respon-
sible for mental health policy required those who were supposed to benefit from the
CMH movement to take matters into their own hands.
The recovery movement and the development of mutual help organizations
operating outside the control of mental health professionals is one of the most
important resources available to many people who find that professional care, how-
ever well-intentioned, is not helping them with their everyday problems in living.
Although largely ignored by mainstream clinicians and policy makers, some profes-
sionals, researchers, and scholars—this group of authors among them—have found
ways to collaborate with and support the movement. To call it a “movement” is to
recognize that something out of the ordinary is taking place: the transformation that
these scholars speak of blends the ideas and shared wisdom of those who have expe-
rienced and rejected the disempowerment involved in playing the role of “mental

xi
xii Foreword

patient” and of those who have learned from community psychology how to foster
conditions that facilitate a different set of role relationships more likely to facilitate
empowerment. Such a movement requires the mobilization of people—ordinary
citizens and advocates—as well as professionals. This volume offers both the guid-
ing principles and action examples that are necessary to foster such a movement.
This volume is about what can be accomplished when an alliance is made
between the targets of our helping services and professionals who are willing to
share what they know, as well as learn from the people they wish to serve. It is about
what can be accomplished when there is a change in role relationships among actors
in a system. It provides both new ideas for thinking about mental health systems and
new ways to act on those ideas. It is a smart book: scholarly, conceptually sound,
and experientially and empirically based. The editors and the chapter authors are
sophisticated and knowledgeable. They know the history of their field, even as they
reinterpret it to offer cutting-edge analysis and forward-looking strategies. They
have a global vision. Collectively, with examples and ideas from multiple commu-
nities and countries, they offer a reply to those who prematurely concluded that
the revolution failed. Perhaps, like most revolutions, early phases of development
require guerilla tactics: people operating largely outside the established system to
organize and create transformative spaces. This book consolidates much that has
been learned about alternative approaches to the transformation of mental health
systems for the seriously mentally ill, as well as for the communities in which those
systems operate. Those who read this book will be inspired to act, organize, research,
and partner with those who are supposed to benefit from our mental health helping
systems.
This is an important book, and one can only hope that those members of the pro-
fessional mental health community, regardless of their discipline or seniority, who
are concerned about the well-being of people who have lived with serious mental
illness will read it with an open mind. Those who do so will be rewarded with new
inspiration. The same is true for those who have been designated as “patients,” as
well as for their families and friends. I encourage people with experience of men-
tal illness to read this volume, then present it to any mental health professionals,
administrators, or elected officials concerned with mental health policy they may
know:  ask them to read and discuss it with you and others. Community mental
health centers are dead; long live community mental health!

Julian Rappaport, Professor Emeritus

University of Illinois
Champaign, Illinois
 ACKNOWLEDGMENTS

We thank Brad Olson and Nicole Allen, Editors of the Society for Community
Research and Action (SCRA) book series, for their helpful guidance and encour-
agement for the preparation of this book. Also, thanks to Teresa Duarte for her help
throughout the process of putting the book together.

xiii
 A B O U T T H E E D I TO R S

Geoffrey Nelson, Ph.D., is professor of psychology and a faculty member in the

graduate program in community psychology at Wilfrid Laurier University, Waterloo,
Ontario. His research and practice has focused on community mental health pro-
grams and supports for people with serious mental illness and community-based
prevention programs for children and families. Underlying his work is an emphasis
on working in partnership with disadvantaged people, community-based participa-
tory action research approaches using both quantitative and qualitative methods, and
value-based critical perspectives that challenge the status quo and that are oriented
toward social change. In 2013, he received the award for Distinguished Contributions
to Theory and Research in Community Psychology from the Society for Community
Research and Action (SCRA), Division 27 (Community Psychology) of the
American Psychological Association, and he received the Harry V. McNeill Award for
Innovation in Community Mental Health in 1999 also from SCRA.

Bret Kloos, Ph.D., is an associate professor of psychology in the University of

South Carolina’s clinical-community psychology doctoral training program. Along
with students and community partners, his work has focused on housing issues
for persons with psychiatric disabilities, social inclusion, promoting mutual help,
and fostering community development that create structures that sustain people’s
well-being and that allow for liberation from oppressive conditions. He earned his
BA in psychology and music from St. Olaf College, his PhD from the University
of Illinois at Urbana-Champaign, and a postdoctoral fellowship at Yale University.
Dr. Kloos has been the principal investigator for research funded by the US National
Institute of Mental Health, the National Institute for Disability Rehabilitation and
Research and has been invited to be an investigator on grants from the Center for
Mental Health Services and the Department of Housing and Urban Development.
Prior to his academic appointment, he held positions as director of a support-
ive housing program, as an evaluation consultant, and as the coordinator of the
Connecticut Self-help Network. He is president-elect of SCRA. Ideas presented in

xv
xvi About the Editors

this volume have developed through the benefit of exchanges with colleagues dur-
ing presentations across the United States, Puerto Rico, Mexico, Germany, France,
and Portugal.

José Ornelas, Ph.D., is an associate professor at the Instituto Superior de Psicologia

Aplicada–Instituto Universitário (ISPA-IU), in Lisboa, Portugal. At ISPA-IU, he is
the director of the community development undergraduate program and commu-
nity psychology master’s degree and doctoral programs. His first doctoral degree
was from Boston University; his second doctoral degree was from the University of
Oporto in Portugal. Over the past 25 years, he has developed research and practice
in the field of community psychology, particularly in the domains of community
mental health. He has been a member of two national commissions in Portugal, one
to reform the mental health systems and the other for higher education based on
new psychology curricula. He was the first president of the European Association of
Community Psychology and was the recipient of Calouste Gulbenkian Foundation
Social Award, in 2011, for his work in developing AEIPS, a community mental
health organization in Lisboa that he founded in 1987.
 ABOU T THE AU THOR S

Rita Aguiar, M.A., is a community psychology doctoral student at Instituto

Superior de Psicologia Aplicada–Instituto Universitário (ISPA-IU) in Lisboa,
Portugal. She works as an assistant researcher in a project granted by the
Foundation for Science and Technology (FCT). After being diagnosed with
obsessive-compulsive disorder in 2001, her main interests concern power relations
in research, emancipatory research, the self-help movement, stigma, and user/
survivor-controlled research.
David Asiamah, Ph.D., obtained a doctoral degree from the clinical-community
psychology program at the University of South Carolina. He is currently a commu-
nity assessment coordinator for a US National Institute for Disability Rehabilitation
and Research-funded study examining environmental factors affecting com-
munity integration of persons with serious mental illness living independently.
His research interests, although broad, center on the educational achievement of
African-American college students, social support, and homelessness.
Tim Aubry, Ph.D., is a professor in the School of Psychology and Director of the
Centre for Research on Educational and Community Services at the University of
Ottawa. An established researcher in the fields of community mental health and
homelessness, he has consulted and collaborated closely on research projects with
community organizations and government at all levels, contributing to the develop-
ment of effective social programs and policies. He teaches graduate courses in com-
munity psychology and program evaluation.
Richard C. Baron, M.A., is the director of knowledge translation for the Temple
University Collaborative on Community Inclusion of Individuals with Psychiatric
Disabilities. His work has focused on community integration, especially for indi-
viduals with psychiatric disabilities.
Louis D. Brown, Ph.D., is a community psychologist and assistant professor at the
University of Texas School of Public Health. His research examines how to improve

xvii
xviii About the Authors

the implementation quality of community-based interventions that promote men-

tal and behavioral health. He is particularly interested in empowering local citizens
to collaborate in improving their lives and their communities. Pursuing these inter-
ests has led to a line of research focused on two types of group-based collaborative
strategies for health promotion: self-help/mutual support initiatives and commu-
nity coalitions.
Victoria H. Chien, Ph.D., obtained a doctoral degree in clinical-community psy-
chology and her master’s degree in business administration from the University of
South Carolina. In one of her primary roles, she serves as the data manager for a US
National Institute for Disability Rehabilitation and Research-funded study examin-
ing environmental factors affecting community integration of persons with serious
mental illness living independently. Victoria has worked as an instructor of behav-
ioral statistics, a program evaluator, and a consultant to nonprofit organizations.
Her research interests include capacity building, community organizing, commu-
nity integration, and evaluation.
Mary Ellen Copeland, Ph.D., is the founder of the Copeland Center for Wellness
and Recovery. She has been working for more than 20 years to prove to the world
that people who deal with mental health issues can and do get well and go on to
live rich and rewarding lives. To do this, she has conducted intensive studies of the
day-to-day and life recovery strategies and skills of people who experience mental
health difficulties and how these people have become well, stayed well, and worked
toward achieving their goals and dreams. She undertook these studies out of her own
frustration in dealing with these issues in her own life. She has achieved long-term
wellness by using many of the skills and strategies she learned from these studies.
Dr.  Copeland has given keynote addresses, seminars, and workshops all over the
world and is well known in the worldwide mental health recovery movement. She is
the author of many self-help resources including WRAP Plus (Peach Press 1997, revi-
sion 2012), WRAP: Wellness Recovery Action Plan (Peach Press, 2012), The Depression
Workbook: A Guide to Living with Depression and Manic Depression (New Harbinger
Publications, 1992, revised 2001), WRAP and Peer Support (with Shery Mead, Peach
Press 2004), and the popular facilitator training curriculum, Mental Health Recovery
and WRAP (Peach Press 1996, revised 2012). Working with Shery Mead, she devel-
oped Community Links: Pathways to Reconnection and Recovery (Peach Press 2006), a
program using education and peer support approaches for people who have repeated
involuntary commitments. She also worked with the Substance Abuse and Mental
Health Services Administration (SAMHSA)’s Center for Mental Health Services to
develop the popular booklet series Self-Help Guides to Recovering Your Mental Health
(SAMHSA 2001) and the Taking Action curriculum (SAMHSA in press).
Hsiao d’Ailly, Ph.D., is an associate professor in psychology and the chair of social
development studies at Renison University College, University of Waterloo. Her
 About the A uthors xix

areas of teaching and research include social statistics, social research methods,
motivation, educational psychology, cross-cultural psychology, immigrant adap-
tation, and community-based research. Dr. d’Ailly has been an active member in
the community and has taken on several leadership roles. She was the president
of the board for K-W Counselling Services from 2005 to 2007, a nonprofit coun-
seling agency in the Waterloo region, and she continued to serve as a member of
the board of directors for that agency until 2010. Dr. d’Ailly also chaired a part-
ners’ table for “Multiculturalism: Helping It Work,” a project funded by Canadian
Heritage, and served on the steering committee for “Newcomers Online,” a project
supported by the Human Resources and Skills Development Canada (HRSDC)
to develop a community-based digital learning space to support new immigrants
in the Waterloo region. She was a member of the steering committee and later par-
ticipated in program evaluation for “Taking Culture Seriously in Mental Health,”
a five-year Community University Research Alliance (CURA) project funded by
Social Sciences and Humanities Research Council of Canada (SSHRC).
Larry Davidson, Ph.D., is a professor of psychiatry and director of the Program
for Recovery and Community Health at the School of Medicine and Institution
for Social and Policy Studies of Yale University. His work has focused on pro-
cesses of recovery in serious mental illnesses and addictions; the evaluation of
innovative recovery-oriented practices, including peer-delivered services; and
designing and evaluating policies to promote the transformation of systems to
the provision of recovery-oriented care. Dr. Davidson has produced more than
200 publications, including A Practical Guide to Recovery-Oriented Practice: Tools
for Transforming Mental Health Care (with Michael Rowe, Janis Tondora, Maria
J. O’Connell, and Martha Staeheli Lawless, Oxford University Press 2009). Most
recently, he has released another book entitled The Roots of the Recovery Movement
in Psychiatry: Lessons Learned with Jaak Rakfeldt and John Strauss, Wiley 2010).
His work has been influential both national and internationally in shaping the
recovery agenda and in translating its implications for transforming mental health
practice.
Betsy A. Davis, M.A., is a graduate student in the clinical-community psychol-
ogy doctoral program at the University of South Carolina. She is currently a
research assistant for a US National Institute for Disability Rehabilitation and
Research-funded study examining environmental factors affecting community inte-
gration of persons with serious mental illness living independently. Her research
interests include community-based interventions aimed at facilitating the recovery
and community integration of individuals with serious mental illness.
Teresa Duarte, M.A., has a master’s degree in community psychology and a BA
in social policy. Currently, she is the president of the Association for the Study of
Psychosocial Integration (AEIPS), a nongovernmental organization that aims to
xx About the Authors

promote recovery, employment, and community integration for people with expe-
rience with mental illness. Teresa is also on the board of the Portuguese Association
for Supported Employment, a member of the European Union of Supported
Employment, and serves on the steering committee of the Portuguese Network for
Corporate and Organizational Social Responsibility.
Paula Goering, Ph.D., is the research lead for At Home/Chez Soi, a project
funded by the Mental Health Commission of Canada and Health Canada. She is
also a professor at the University of Toronto and an affiliate scientist at the Centre
for Addiction and Mental Health. Her research interests include homelessness,
the evaluation of community mental health services, and knowledge translation.
She has, throughout her long career, been involved in applied research and con-
sulting aimed at improving systems of care for individuals with severe mental
illness.
Jay Harrison, B.A., is a master of social work candidate at Wilfrid Laurier University
in Kitchener, Ontario. Jay’s research and practice interests include meaningful user/
survivor involvement in all aspects of the mental health system and the legitimacy
of lived experience knowledge. Jay’s work is greatly informed by her own recovery
and community work, including serving as president of the Self-Help Alliance, a
consumer/survivor initiative located in southwestern Ontario.
Nora Jacobson, Ph.D., is an interpretive social scientist who uses qualitative meth-
ods to study the development of health policy and the design and delivery of health
services. She is the author of Cleavage:  Technology, Controversy, and the Ironies of
the Man-Made Breast (Rutgers University Press 2000), In Recovery: The Making of
Mental Health Policy (Vanderbilt University Press 2004), and Dignity and Health
(Vanderbilt University Press 2012). From 2001 until 2010, she was a scientist in
the Health Systems Research and Consulting Unit at the Centre for Addiction and
Mental Health in Toronto. Currently, she is senior scientist and qualitative method-
ologist at the Institute for Clinical and Translational Research at the University of
Wisconsin-Madison.
Rich Janzen, Ph.D., is research director at the Centre for Community-Based
Research in Kitchener, Ontario, and assistant professor at Renison University
College at the University of Waterloo. He has been involved in more than 90 applied
research projects that have used a participatory action research approach. For Rich,
research is a tool for social change—to find new ways of bringing people who are on
the edge of society to live within the community as full and equal members. Much
of his research has focused on issues of immigrant settlement and integration, immi-
grants and churches, and community mental health. Rich has an academic back-
ground in community psychology, having completed an MA and a PhD at Wilfrid
Laurier University in Waterloo, Ontario. He has also taught community-based
research methods to graduate social work students.
 About the A uthors xxi

Nev Jones, Ph.D., is an interdisciplinary social science researcher, activist scholar

and co-founder of the Lived Experience Research Network. Her research interests
include the treatment and phenomenology of psychosis, the sociopolitics of the
user/survivor movement, and the critical medical humanities.
Jessica A. Jonikas, M.A., is associate director of the University of Illinois at Chicago
(UIC) Center on Mental Health Services Research and Policy, as well as a research
specialist in Health Systems Research for the UIC Department of Psychiatry. She
holds a master’s degree from the University of Chicago, School of Social Service
Administration and Center for Health Administration Studies. Ms. Jonikas is
co-investigator/program director on federally funded projects to promote health
and self-determination for people in recovery, as well as evidence-based practice
and research translation in public mental health settings. Ms. Jonikas is the senior
author or co-author of research articles, book chapters, training guides, and other
educational resources on recovery-oriented models of care. For more than two
decades, she has been an influential force in preparing and mentoring the mental
health workforce.

Maria Fátima Jorge-Monteiro, M.A., is currently a researcher at Psychology and

Health I&D at Instituto Superior de Psicologia Aplicada–Instituto Universitário
(ISPA-IU), Lisboa, Portugal, where she is completing her doctoral degree. She also
has experience as a practitioner in a community mental health organization and
expertise in social and mental health policies. She has participated on policy boards
through her membership in national advocacy organizations.

Thomas A. Kirk, Jr., Ph.D., is an executive whose extensive career includes nation-
ally recognized design, operational, and leadership experience in public and private
health care systems. His vision has been driven by the firm belief that substance
abuse and mental illness are treatable health care conditions for which recovery
should be hoped for and expected and that individuals and families in care must
be major forces in designing care systems. These themes, at the outset and dur-
ing his public service tenure in Connecticut as commissioner (2000–2009) of the
Department of Mental Health and Addiction Services, were the basis for setting an
overarching strategic goal to transform a traditional care system into one designed,
implemented, and evaluated based on recovery-oriented principles, values, and
outcomes proposed by the mental health and addiction recovery communities.
This resulted in a statewide quality enhancement focus, emphasis on continuing
and recovery support versus acute care strategies, and strong cross-state agency,
academic, faith, and recovery community partnerships. Strong outcome and
aggressive resource development/reinvestment approaches supported the transfor-
mation. Dr. Kirk currently is a member of the National Institute on Drug Abuse
Advisory Council, served on the Substance Abuse and Mental Health Services
Administration (SAMHSA) National Council (2005–2009), and has participated
xxii About the Authors

in workgroups of the Betty Ford Institute, the Milbank Memorial Fund, MacArthur,
and Robert Wood Johnson Foundations. He was appointed, in July 2011, to the
faculty of the Yale School of Medicine, Department of Psychiatry at the rank of pro-
fessor (adjunct) and maintains a part-time consulting practice.
Laura Kurzban, M.A., is a doctoral student in the Clinical-Community Psycho­
logy program at the University of South Carolina. She received her MA in psychol-
ogy from New York University in 2010. She is currently working on a US National
Institute for Disability Rehabilitation and Research-funded study examining how
social and environmental factors can facilitate community integration for people
with psychiatric disabilities. Her research interests include the effects of poverty,
homelessness, and stigma, and also community-based interventions for mental
illness.
Sarah Maiter, M.S.W., Ph.D., is associate professor in the School of Social Work,
Faculty of Liberal Arts and Professional Studies at York University, Toronto, Ontario,
Canada. Her teaching, research, and practice focus on policy and services for mem-
bers of diverse ethnocultural/racial communities, particularly in the areas of mental
health, child welfare, and youth mental health. Dr. Maiter is principal investigator/
co-investigator of several Social Science and Humanities Research Council-funded
projects. She is currently exploring child protection services for members of diverse
ethnoracial families when language barriers exist. Dr. Maiter was board member and
chair of the Diversity Committee of the American Professional Society on the Abuse
of Children (APSAC). She also served as an expert panel reviewer for Guidelines
for Culturally Competent Evidence-Based Approaches to Trauma Treatment for
the National Child Traumatic Stress Network and has provided consultation and
training to child protection agencies and workers on policy and services for diverse
ethnoracial families.
Lauren Munro, B.A., is a doctoral student in community psychology at Wilfrid
Laurier University in Waterloo, Ontario, whose research is primarily focused on
social exclusion related to the health and well-being of gender and sexual minori-
ties. Her approach to research is grounded in her lived experience as a user/survivor
and, as such, she favors projects that prioritize marginalized voices and emphasize
community control. Lauren is also an actor-activist, artist, and writer. She strongly
believes in the importance of integrating academia and grassroots activism to create
projects that push boundaries and challenge the status quo.
Joanna Ochocka, Ph.D., is executive director of the Centre for Community-Based
Research and an adjunct faculty member in the Department of Sociology at
University of Waterloo and in the MA/PhD program in community psychology
at Wilfrid Laurier University in Waterloo, Ontario, Canada. She was a recipient of
Award for Teaching Excellence for the 2005 at Wilfrid Laurier University. Joanna
is one of the leaders in the use of participatory action research, and she practices
 About the A uthors xxiii

community-based research as a tool to mobilize people for social change. Joanna’s

research and action have focused on community mental health for people with seri-
ous mental health issues, cultural diversity and immigration, and community sup-
ports for marginalized populations. She led the Community-University Research
Alliance (CURA) on culture and mental health and CUExpo2011.
Maria O’Connell, Ph.D., is an assistant professor in the Department of
Psychiatry at Yale University and the director of Research and Evaluation at the
Yale Program for Recovery and Community Health. Dr. O’Connell has provided
oversight and quality assurance for collaborative research and evaluation projects
conducted at PRCH since 2002. She has an extensive background in conduct-
ing research on recovery-related topics, including psychiatric advance directives,
self-determination and choice, recovery-oriented services, housing, and other
community-based programs, as well as expertise in the development of data man-
agement systems, statistical analysis, and program evaluation. Dr. O’Connell has
produced more than 50 publications on topics related to recovery, advance direc-
tives, case management, supported housing, citizenship, and peer-related work,
and she is considered a leader in the field on the assessment of recovery-oriented
systems of care.
Mary O’Hagan was a key initiator of the mental health psychiatric survivor move-
ment in New Zealand in the late 1980s and was the first chairperson of the World
Network of Users and Survivors of Psychiatry between 1991 and 1995. She was a
mental health commissioner in New Zealand between 2000 and 2007. Mary is now
an international consultant in mental health and the developer of PeerZone—a
series of peer-led workshops in mental health and addiction. She has written and
spoken on user and survivor perspectives in many countries and has been an inter-
national leader in the development of the recovery approach.
Myra Piat, Ph.D., is a researcher at the Douglas Mental Health University Institute
Research Centre and assistant professor in the Department of Psychiatry and
School of Social Work at McGill University. She has many years of experience in
managing social services in the public and community sectors. Her research focuses
on mental health and homelessness, housing preferences, peer support, nonprofes-
sional caregivers, and the implementation of mental health recovery policy into ser-
vices. Dr. Piat has also been instrumental in developing a partnership with the Yale
University Program on Recovery and Community Health.
Lauren Polvere, Ph.D., is a research associate at the Douglas Mental Health
University Institute. Lauren earned a PhD in developmental psychology from
the Graduate Center, City University of New York (CUNY). Lauren’s research
is focused on mental health recovery, youth agency and development, Housing
First and interventions for homeless adults, and youth perspectives on institu-
tional care.
xxiv About the Authors

David Reville, psychiatric survivor, is an adjunct professor in the School of

Disability Studies at Ryerson University. He teaches Mad People’s History. He
has been working on mental health issues for more than 40  years as a commu-
nity activist, a member of Toronto City Council and the Ontario Legislature
­(1980–90), special advisor to the premier (1990–94), and chair of the Ontario
Advocacy Commission. In 1996, he established David Reville & Associates (DRA),
which specializes in social research and community development. The Centre for
Addiction and Mental Health (CAMH) has been a major client, retaining DRA as a
consultant on its redevelopment project and on client employment, empowerment,
and banking. Since 2004, David has been an instructor in the School of Disability
Studies at Ryerson University. David’s community service has been recognized by
the Canadian Mental Health Association, the ARCH Disability Law Centre, and
the Council of Canadians with Disabilities.
Priscilla Ridgway, Ph.D., is organizational and community researcher at the Center
for Community Support and Research at Wichita State University. She was for-
merly an assistant professor in the Department of Psychiatry at the Yale University
School of Medicine. Her education includes an MSW (University of Connecticut)
and PhD in social work (University of Kansas). Ridgway has personal experience
of recovery from brain trauma and post-traumatic stress disorder. Her work in the
field of mental health spans more than 40 years, from being a psychiatric aide, case
manager, and advocate for psychiatric inpatients to directing innovative programs
at a psychosocial rehabilitation agency and coordinating research and planning and
policy development for a state mental health department. For the past 20 years, she
has worked within organizations committed to innovation and building recovery
paradigm knowledge, including the Center for Psychiatric Rehabilitation at Boston
University, the University of Kansas Office of Mental Health Research and Training,
and Advocates for Human Potential, Inc. Her work in the past several years includes
co-authoring Pathways to Recovery:  A  Strengths Self Help Workbook (with Diane
McDiarmid and Lori Davidson University of Kansas 2011) for personal recovery;
national research on a team primarily of consumer researchers in the What Helps
and What Hinders Recovery? Project; work on recovery and resilience, hope, and
spirituality; work on defining elements of a recovery and recovery-facilitating sys-
tem; the development of recovery performance indicators; and whole-health, peer
support, and trauma healing.
Susan Rogers, B.A., is director of the National Mental Health Consumers’ Self-Help
Clearinghouse, a consumer-run national technical assistance center funded in part
by the Substance Abuse and Mental Health Services Administration (SAMHSA),
Center for Mental Health Services; and she is director of special projects of the
Mental Health Association of Southeastern Pennsylvania. She has 37  years of
experience as a writer and editor; her articles have appeared in such publications
as Behavioral Healthcare and the Journal of Psychosocial Nursing; and she currently
 About the A uthors xxv

edits People First for the Pennsylvania Office of Mental Health and Substance Abuse
Services. She has spoken at numerous national and statewide conferences and has
been interviewed for television, radio, and print media. She has been active in the
consumer/survivor movement since 1984.
Mark S. Salzer, Ph.D., is a professor and founding chair of the Department of
Rehabilitation Sciences at Temple University. He is the director of the Temple
University Collaborative on Community Inclusion of Individuals with Psychiatric
Disabilities, a research and training center funded by the National Institute on
Disability and Rehabilitation Research. Dr.  Salzer obtained his BA in sociology
and psychology from the University of Wisconsin-Madison, his PhD in clinical/
community psychology from the University of Illinois at Urbana/Champaign, and
completed his clinical internship at Yale University. Dr. Salzer has been the principal
investigator on numerous federally funded research grants and has more than 60
publications that examine the delivery of effective community mental health and
rehabilitation services to individuals with psychiatric disabilities.
Marybeth Shinn, Ph.D., is professor and chair of the Department of Human and
Organizational Development at Peabody College, Vanderbilt University. Much of
her research focuses on homelessness—how to understand it, prevent it, and end
it for different populations, including individuals with serious mental illnesses. She
has also worked with the Center for Recovery in Social Contexts at the Nathan
Kline Institute to understand how the capabilities approach can contribute to
recovery and open opportunities for people with mental illnesses. She is currently
collaborating with colleagues at the Instituto Superior do Psicologia Aplicada and
the Associação para o Estudo e Integração Psicossocial in Portugal to examine how
the latter organization promotes members’ capabilities. Beth has served as presi-
dent of the Society for the Psychological Study of Social Issues and the Society for
Community Research and Action, and she received the Award for Distinguished
Contributions to Theory and Research from the latter group.
John Sylvestre, Ph.D., is an associate professor in the School of Psychology and
a senior researcher at the Centre for Research on Educational and Community
Services, both at the University of Ottawa. He is also currently senior editor of the
Canadian Journal of Community Mental Health. He has many years of experience
conducing research and program evaluations of various aspects of local and provin-
cial community mental health systems, including housing for people with serious
mental illness, crisis intervention, and court outreach programs.
Greg Townley, Ph.D., is an assistant professor in the Department of Psychology
at Portland State University. He earned his PhD in clinical-community psychology
from the University of South Carolina. His research interests include community
inclusion of individuals with psychiatric disabilities, homelessness and housing,
sense of community theory and measurement, and social-environmental research
xxvi About the Authors

methods. He is also involved in research and applied work with peer-delivered men-
tal health services and acts as the incoming co-chair of the Society for Community
Research and Action (SCRA) Self-Help/Mutual Support interest group.
John Trainor, M.S.W., is recently retired from his position as director of the
Community Support and Research Unit (CSRU), Centre for Addiction and
Mental Health (CAMH). He is an adjunct professor in the Department of
Psychiatry, University of Toronto. He has extensive experience in hospital- and
community-based mental health services. As director of the CSRU at CAMH, he
was responsible for innovative programs in direct service, advocacy, community
development, and research. From 1991 to 1995, Mr. Trainor was seconded as a
senior policy advisor and program coordinator with the Ontario Ministry of Health
and was responsible for the program development, policy, and research aspects of a
provincewide initiative to develop consumer-controlled mutual aid programs.
Sam Tsemberis, Ph.D., founded Pathways to Housing, an organization based
on the belief that housing is a basic right, in 1992. He currently serves as its CEO.
Pathways developed the Housing First program that has been remarkably effective
in ending homelessness for people with mental health and addiction problems.
Pathways Housing First program is successfully replicated in many places in the
United States, Canada, and Europe. Dr. Tsemberis is a clinical-community psychol-
ogist and is on the faculty of the Department of Psychiatry at Columbia University
Medical Center. His latest book, entitled Housing First, was published by Hazelden
Press in 2010.
Karen V. Unger, M.S.W., Ed.D., is president of the consulting firm Rehabilitation
Through Education located in Portland, Oregon, and is an associate research pro-
fessor at Portland State University. Prior to these positions, she was a research asso-
ciate professor at the University of Arizona in Tucson and director of Supported
Education at the Center for Psychiatric Rehabilitation, Boston University, where
she led the development of the concept of supported education in the early 1980s.
Dr. Unger has authored numerous articles and book chapters on supported edu-
cation and has written A Handbook on Supported Education, Providing Services for
Students with Psychiatric Disabilities (published by Paul H.  Brookes Publishing
Company 1998) and Supported Education: A Promising Practice (in the SAMHSA
Evidence-Based Practices KIT series 2011).
 PA RT O N E

OVERVIEW OF COMMUNITY
PSYCHOLOGY, COMMUNITY
MENTAL HEALTH, AND
TRANSFORMATIVE CHANGE
 1

Transformative Change in Community

Mental Health
A Community Psychology Framework

geoffrey nelson, bret kloos, and josé ornel as

This book is about changing “business as usual” for people who have been identi-
fied as having “serious mental illness.” By business as usual, we mean not just the
types of services available to this population, but also how communities do or do
not support people with lived experience of mental health issues and psychiatric
treatment, the social conditions (e.g., employment, housing) in which they live, the
social policies that guide and maintain current practices, and the way that research
is conducted with this population.
Before proceeding further, we pause here to make a few comments about language
and terminology. There are many different ways to refer to people with lived experi-
ence of mental health issues and treatment. These include medical model language
of mental illness and specific diagnoses (e.g., schizophrenia); language from the per-
spective of disability studies, such as “psychiatric disability”; and terms used by peo-
ple with lived experience to refer to themselves, including “ex-patient,” “consumer,”
“survivor,” “user,” “peer,” and “person with lived experience.” Because we believe that
people should have the right to describe themselves, we, the editors, have decided to
use the term consumer/survivor in those parts of the book that we have written. At
the same time, we recognize that different authors have different preferences for the
language that they use. To respect those preferences, the authors who have contrib-
uted chapters to this book use different language and terms. For the most part, we use
the term “professional” or “service provider” to refer to people from different profes-
sional disciplines (e.g., psychiatry, psychology, social work) who provide different
types of treatment and support (e.g., therapy, case management).
Changes have occurred in the way that mental health services are provided to this
population. In spite of changes in the locus of treatment from psychiatric hospitals

3
4 Overview of Community Psychology

to the community, many mental health consumer/survivors live in deplorable con-

ditions (Yanos, 2007) and face stigma and discrimination (Corrigan & Penn, 1999).
Furthermore, the services that are provided to them are often inadequate (Lehman,
2010). We believe that there is a need for a new vision in community mental health
(CMH) for mental health consumers/survivors, one that focuses on the social
experiences of mental illness. As Corrigan and Penn (1999) stated, “severe mental
illness like schizophrenia strike like a two edged sword” (p. 765). These illnesses
profoundly disrupt personal functioning and have a simultaneous onerous set of
social consequences as communities respond to a person’s problems. We believe
that just as community and society are part of the problem in the mental health
field, they can be part of the solution, too. To this end, this book provides a vision
for change and includes exemplars of how services, communities, social conditions,
social policies, and research can be fundamentally transformed to promote dialogue
and innovation in the mental health field that enhance the recovery of mental health
consumers/survivors.
The three of us who are the editors of this book are community psychologists
with many years of experience working with mental health consumers/survivors
and communities. We have learned from consumers/survivors and the initiatives
that they have created around the world. We have played the roles of researcher,
evaluator, service provider, program planner, and advocate. We came together
because of our mutual interest and desire to create a resource that shares common-
alities from different initiatives, articulates a vision and agenda for the future, and
promotes social change for mental health consumers/survivors. Our background in
community psychology has provided us with a framework for understanding what
kinds of change are needed and how such changes can be made in the field of CMH.
To this end, we have recently created an International Network for Transformative
Change in Community Mental Health. One initial focus of this network is the pro-
duction of this book.
In this introductory chapter, we discuss:

1. why transformative change in CMH is needed;

2. why community psychology is uniquely positioned to promote transformative
change;
3. what constitutes transformative change and how it can be achieved; and
4. who the audiences are for this book.

Why Transformative Change in Community Mental

Health Is Needed
Historically, people with serious mental health issues were relegated to psychiatric
hospitals, which were dehumanizing and ineffective in helping them. In the 1950s
 Trans for mative Chang e in C ommuni t y Me ntal Health 5

and 1960s, deinstitutionalization of significant numbers of people who had been

hospitalized began. Unfortunately, community support for people who were dis-
charged from hospitals diminished in the face of a seemingly endless demand for
treatment and unmet need for services (Carling, 1995). All too often, poverty, poor
quality of housing, lack of employment opportunities, discrimination, social isola-
tion, and alienation “greeted” those people in North America, Australia, and Europe
who left large institutions to live in the community (Carling, 1995; Chamberlin,
1978; Yanos, 2007). In the United States, caseloads for mental health profession-
als have increased while resources for mental health services have been cut (Burns,
2004). As society and government became more conservative, funding agencies
called for psychological research on biomedical causes of mental illness rather than
social causes, and researchers’ interests followed suit (Humphreys  & Rappaport,
1993).
With the development of CMH and reforms in mental health practice, people
with mental health challenges were seldom included in discussions about how com-
munities can respond to the realities of mental health problems. By not including
all stakeholders, these reforms often overlooked valuable resources for addressing
mental health concerns; that is, the experience and input of mental health con-
sumers/survivors. Previous mental health reforms of the 19th and 20th centuries
highlighted consumers/survivors’ experiences and search for justice (e.g., Elizabeth
Packard, Clifford Beers), but consumer/survivor involvement in reforming prac-
tices was functionally nonexistent (Rappaport, 1977). However, during the past
30  years, the voices of mental health consumers/survivors have become increas-
ingly more influential in policy deliberations and decisions (Chamberlin, 1990;
Nelson, Janzen, Trainor, & Ochocka, 2008).
As a distinct social movement, the consumer/survivor movement had its begin-
nings in the early 1970s in North America (see the ­chapter 6 by Brown and Rogers
in this book for more information on the history of this movement). As reported in
the book On Our Own, by Judi Chamberlin (1978), one of the leaders of this move-
ment, people who had been hospitalized in psychiatric institutions began to meet
and organize themselves into small groups to talk about their experiences, to struc-
ture their networks of support based on mutual help, and to draw the attention of
society to the situation of segregation and exclusion in which they lived. Like other
major social movements of that era, particularly the civil rights movement and the
women’s movement, these groups focused on advocacy activities, seeking to change
the social status of people labeled with mental illness and promote antidiscrimina-
tion legislation to restore and ensure the protection of their human and civil rights
(Chamberlin, 1990).
Many consumers/survivors began to write and publish their experiences in nar-
rative form, claiming the right to describe these experiences on their own terms,
and thus challenging the dominant cultural narratives about mental health issues.
To express their alternative views and to explain the change in their life stories, they
6 Overview of Community Psychology

developed a new concept, personally, socially, and politically more empowering,

which they named recovery. The term “recovery” is defined as a personal process
of rediscovering a new sense of identity, self-determination, and empowerment to
live, participate, and contribute to the community (Ahern & Fisher, 2002; Deegan,
1988; Leete, 1989). This concept of recovery has a social and political dimension
beyond the personal, one focusing on the need for social change in order to build
inclusive communities.
More than 20  years ago, community psychologist Julian Rappaport (1992)
wrote about “the death and resurrection of community mental health,” in which
he argued that the CMH movement reinforced the societal status quo. Rappaport
was critical of a system of services that disempowered mental health consumers/
survivors rather than promoting their liberation and recovery. Community mental
health in the United States became equated with community mental health centers
(CMHCs) and CMH services. The shortcomings of these centers and programs
include a focus primarily on the individual and her or his deficits; an emphasis on
symptom reduction, maintenance, and cost reduction; a paradoxical emphasis on
professional service delivery but underresourced systems of care that do not pro-
vide sufficient access to professional services; an emphasis on professionals as the
source of help; and a focus on treatment rather than prevention or community inter-
vention (Nelson, Lord, & Ochocka, 2001). Community psychologist John Morgan
(2008) provided a narrative account of the difficulties and importance of imple-
menting changes in CMH settings based on more than 30 years of his career experi-
ence. With the emergence of the consumer/survivor movement, the shift in focus
away from illness to recovery, the recognition of the limitations of CMH services,
and the need for fundamental change in mental health became more apparent.

Why Community Psychology Is Uniquely Positioned

to Promote Transformative Change
In its early days, community psychology was intimately linked with the field of
CMH in many countries (Reich, Riemer, Prilleltensky, & Montero, 2007). During
the 1960s, many community psychologists were trained in clinical psychology,
which they found to be an inadequate model for CMH services. These psycholo-
gists embarked on developing innovations to create new approaches to CMH that
focused on prevention, the use of nonprofessional helpers, community lodges as
a residential alternative for deinstitutionalized patients, and self-help alternatives.
Many of these community psychologists became the founders of the field and ush-
ered in a new direction for CMH. Subsequently, other community psychologists,
including those who have contributed to this volume, have continued this tradition
of innovation. We discuss the contributions of community psychology to CMH in
more depth in Chapter 2.
 Trans for mative Chang e in C ommuni t y Me ntal Health 7

What underlies these contributions are some key principles that define commu-
nity psychology. We discuss these concepts in more depth in Chapter 2, but here
we introduce some of the most important community psychology concepts that
have guided work in CMH. First, since its inception (Rappaport, 1977), commu-
nity psychology has been attentive to the importance of values. These values include
self-determination, caring and compassion, respect for diversity, and social justice
(Nelson & Prilleltensky, 2010). It is these values that provide the foundation of a
vision for change in CMH. For example, in their study of transformative change
in three CMH organizations, Nelson et al. (2001) found that the following values
guided the change process: (1) stakeholder participation and empowerment, (2)
community support and integration, and (3) social justice and access to valued
resources.
Second, although mental health has traditionally focused on the individual “cli-
ent,” community psychology highlights the importance of social context and uses
an ecological perspective that looks at the fit between the individual and the envi-
ronment (Rappaport, 1977). Kelly (1966) first provided an ecological analysis of
mental health services that had several implications, including viewing the com-
munity, rather than the individual, as the client; a focus on reducing the use of men-
tal health services; strengthening community resources; and planning for change.
Another important aspect of this ecological perspective is its focus on multiple lev-
els of analysis from the macrosystem to the mesosystem (which consists of two or
more interrelated microsystems) to the individual (Bronfenbrenner, 1977). Social
ecology provides a multilayered, contextual framework that stands in contrast to
the individualistic framework of mainstream services for mental health consumers/
survivors.
Third, community psychology emphasizes empowerment and citizen partici-
pation (Rappaport, 1987; Zimmerman & Rappaport, 1988). Rappaport (1981)
defined empowerment as “a process: the mechanism by which people, organi-
zations, and communities gain mastery over their lives” (p.  3). Power dynam-
ics in the relationships between stakeholders in the mental health system are
important to understand before making attempts at transformative change. For
example, in the institutional era of the mental health system, professionals held
all or most of these types of power in their relationships with patients who were
powerless. For transformative change to occur, there must be a shift in power,
with consumers/survivors gaining more power in their relationships with other
stakeholders, particularly professionals. A key component of power is participa-
tion (Zimmerman & Rappaport, 1988). Historically, mental health consumers/
survivors have been excluded from participating in decisions that affect their
lives. Consumer/survivor participation is fundamental to transformation in
CMH (Nelson & Grant, 2011).
In Part III of this book, we examine consumer/survivor participation in mental
health. Larry Davidson and colleagues (Chapter 5) focus on the participation of
8 Overview of Community Psychology

mental health consumers/survivors in various roles and capacities in system change

efforts. Based on their extensive experiences in transforming the mental health sys-
tem in Connecticut, the authors describe strategies for recruiting people in recovery
into these various roles and functions and the ways in which these activities have
had transformative impacts on the statewide system as a whole. In the same section,
Louis Brown and Susan Rogers show how the consumer/survivor movement and
consumer-run organizations have been instrumental in creating changes in mental
health services and policies.
Fourth, community psychology emphasizes informal social support and peer
support. Whereas traditional mental health services emphasize professionally deliv-
ered treatment, community psychologists have recognized that informal support
from family and friends is very important for an individual’s well-being (Barrera,
2000). Whereas professional support is confined to treatment services, informal
social support includes emotional support, guidance, tangible support, and socializ-
ing. In the mental health field, Trainor, Pomeroy, and Pape (1999) have introduced
a Framework for Support that emphasizes informal social support from family,
friends, and peers. Peer support is particularly valuable in CMH because mental
health consumers/survivors who have been through similar experiences can have a
very good understanding of what their peers experience (Mead, Hilton, & Curtis,
2001). Peer support is the foundation in CMH for self-help/mutual aid groups and
consumer-run organizations (Borkman, 1999). The chapters by Brown and Rogers
and Trainor and Reville in this book provide an in-depth examination of these
initiatives.
Collaboration and partnerships is the fifth principle of community psychol-
ogy that is important for transformative change in CMH (Foster-Fishman,
Berkowitz, Lounsbury, Jacobson, & Allen, 2001; Trickett & Espino, 2004; Wolff,
2010). Collaboration entails community psychologists working in partnership
with a diverse range of community stakeholders to address community problems.
Collaboration is also a way of working with people that involves mutual problem
solving, as opposed to an expert model in which the professional presumes to hold
the knowledge and correct solutions to problems. Wolff (2010) underscores that
involving those most directly impacted by an issue is a key feature of collaboration.
In CMH, this means that mental health consumers/survivors must play a central
role in any efforts to create transformative change. Throughout this book, the vari-
ous contributors describe change efforts that involve collaboration and partner-
ships among multiple stakeholder groups.
One final principle from community psychology that guides work in CMH is
that of strengths (Rappaport, 1977). A focus on strengths stands in contrast to the
emphasis on deficits that is so much a part of medical model of “mental illness,”
as manifested in the diagnostic categories of the Diagnostic and Statistical Manual
of Mental Disorders (DSM), now in its fifth edition. Diagnostic labels are “sticky”
and tend to color perceptions of the individual with a diagnosis. Consumers/
 Trans for mative Chang e in C ommuni t y Me ntal Health 9

survivors often object to diagnoses, arguing that they lead to stigma and discrimina-
tion (Corrigan & Penn, 1999). Recently, there has been an upsurge in the idea of
recovery (see Chapter 5 by Davidson et al., Chapter 7 by Copeland and Jonikas,
and Chapter 16 by Piat and Polvere), which focuses on an individual’s strengths and
provides a more holistic picture of the individual and her or his potential for growth
and improvement (Deegan, 1988).

What Constitutes Transformative Change in Community

Mental Health and How It Can Be Achieved
We begin this section by discussing how transformative change is different from
ameliorative change, and we indicate its value for mental health systems change.
This is followed by an examination of potential indicators, strategies, and outcomes
of creating transformative change at multiple ecological levels of analysis. We illus-
trate each of these levels with examples of transformative change from subsequent
chapters in the book. Finally, we touch on theories of and research on transforma-
tive change.

What Is the Difference Between Ameliorative

and Transformative Change?
In their analysis of change in human systems, Watzlawick, Weakland, and Fish
(1974) distinguished between first- and second-order change. First-order change is
ameliorative because it involves change within a system, with no questioning of the
fundamental values of the system or the assumptions about how it should operate;
second-order change is transformative because it entails a fundamental alteration in
the values and operations of the system (Nelson & Prilleltensky, 2010; Rappaport,
1977). The distinction between ameliorative and transformative change is a useful
way of thinking about change in CMH that is congruent with a community psychol-
ogy analysis based on the previously mentioned concepts. We argue that ameliora-
tive change follows an individualistic model that ignores power dynamics, whereas
transformative change is rooted in an ecological model that highlights and strives to
change power relationships between mental health consumers/survivors and other
stakeholders (e.g., professionals).
The move from institutions to community-based programs is ameliorative
because community-based approaches typically retain much of the character of
the institutional approach. In our view, a focus on ameliorative change can detract
and draw resources away from efforts at transformative change. Although some
might argue that ameliorative change can be a stepping stone toward transformative
change, our position is that transformative change can be accomplished without
first engaging in ameliorative change, as has been demonstrated by mental health
10 Overview of Community Psychology

reforms in Italy (Burti, 2001), Portugal (Ornelas, Vargas-Moniz, & Duarte, 2010),

and other nations. Here, we elaborate further on the differences between ameliora-
tive and transformative change in CMH along several dimensions (Nelson et al.,
2001).

Framing of Issues and Problems

Operating from an individualistic frame of reference is retained in the ame-
liorative shift from institutional to community approaches. Whether the
person is called a “patient” or a “client,” she or he is the problem that needs
to be solved. Although located in the community, programs like Assertive
Community Treatment (ACT) and Intensive Case Management (ICM;
Mueser, Bond, Drake, & Resnick, 1998) were constructed to function like a
“hospital without walls,” with staff sometimes relying on coercive practices to
get clients to behave in the way that they wanted them to behave (Gomory,
1999; Spindel, 2000).
In a transformed system, the person with a mental health issue is, first and fore-
most, a citizen with rights, strengths, and the potential for recovery, not a patient or
client who needs to be supervised, managed, or controlled (Rowe, Kloos, Chinman,
Davidson, & Cross, 2001). Also, problems are framed as transactional between the
person and her or his environment, which means that degrading environmental
conditions, such as poverty and stigma, must be changed. Finally, there is an explicit
recognition of the need to reduce the power differential between consumers/survi-
vors and professionals.

Values
Although values are not explicit in ameliorative change, the implicit values in the
move to community-based approaches are very similar to those of the institutional
model. There is a value on health, which is constructed narrowly on symptom
reduction, and on the protection of the individual and society, which effectively
means social exclusion in semi-institutional, segregated settings in the community.
In contrast, values are central to transformative change. Holistic health, recovery,
wellness, and positive mental health are emphasized. Also, transformation empha-
sizes active consumer participation in planning, services, and research, with real
power, voice, choice, and control (Nelson & Grant, 2011). The value of social inclu-
sion means that consumers/survivors should not only be in the community, but
that they should be valued members of the community, people who are integrated
into typical community settings and who enjoy relationships with other community
members (Lord  & Hutchison, 2011). Finally, transformative change emphasizes
the value of social justice in consumers/survivors’ access to income, education,
employment, and housing.
 Trans for mative Chang e in C ommuni t y Me ntal Health 11

Focus of Intervention
In ameliorative change, the locus of intervention changes from the hospital to the
community, but the focus of intervention remains much the same. Treatment con-
sists of medication and social skills training delivered by mental health profession-
als to reduce psychiatric and psychosocial deficits (Bellack, 2004). In contrast, a
transformed system has a different intervention focus. In Canada, Trainor et  al.
(1999) articulated a Framework for Support for mental health consumers/survi-
vors that reflects our vision of a transformed mental health system with its empha-
sis on community support, as well as on treatment. Key features of the framework
include the consumer being in control of the sources of support that surround him
or her; a strong emphasis on family, friends, social networks, peer support, self-help,
and community; and access to basic entitlements (e.g., housing, income, work).
Similarly, O’Connell et al. (2005) identified the following qualities of transformed
recovery-oriented practices in their research: a focus on the consumer’s life goals,
consumer participation, diversity of treatment options, choice, and individually tai-
lored services.

Desired Outcomes
Community-based treatment that is ameliorative in nature aims to reduce symp-
toms and readmission to hospital and to improve social skills (Mueser et al., 1998).
Transformative change, on the other hand, emphasizes outcomes that reflect recov-
ery (i.e., personal confidence and hope, a goal and success orientation, social sup-
port, lack of domination by symptoms; Corrigan, Salzer, Ralph, Sangster, & Keck,
2004); empowerment (i.e., self-esteem, perceived power, community activism,
optimism and control, righteous anger; Rogers, Ralph, & Salzer, 2010); and access
to the valued resources of work, finances, and housing (Newberry & Strong, 2009).

Role of Consumers and Professionals in Intervention

and Sources of Valued Knowledge
The roles of professionals and consumers/survivors remain basically the same in
ameliorative change, with professionals still having all or most of the power, and
consumers/survivors having minimal opportunities for having a say about the pro-
grams that serve them. Professionals are still seen as the experts who know what is
best for clients. Many professionals believe that scientific knowledge, be it medi-
cal, clinical, or social, is the only valid and useful form of knowledge to guide treat-
ment (Trainor, Pomeroy, & Pape, 1997). According to Foucault (1969/2002), this
guarding of knowledge represents a method of maintaining and increasing power;
only professionals get to decide what constitutes valid knowledge.
In a transformed system, consumers/survivors have choice and control over
their treatment and support (Nelson  & Grant, 2011), and, consistent with an
12 Overview of Community Psychology

ecological perspective, consumers, family members, community members, profes-

sionals, and nonprofessionals are all viewed as potential resources with a role to
play in community interventions to support consumers/survivors (Trainor et al.,
1999). In a transformed system, the lay knowledge and the experiential knowledge
that community members and consumers bring to the table are valued (Trainor
et al., 1997). Valuing experiential and lay knowledge is an important way of sharing
power with consumers/survivors (Borkman, 1999; Foucault, 1969/2002). At the
same time, scientific knowledge is also valued. Indeed, a current theme in the lit-
erature is how consumer-driven, recovery-oriented practices can be integrated with
evidence-based practices that have been scrutinized through traditional scientific
research (Bellack, 2006; Davidson, Drake, Schmutte, Dinzeo,  & Andres-Hyman,
2009; Salyers & Tsemberis, 2007).

Types of Treatment and Role of Community

Many community-based programs based on ameliorative change are
semi-institutional in nature and segregated from the community. The following
scenario is typical. Clients living in a group home are driven together in a bus or
mini-van to a sheltered workshop or recreational outing without ever meeting or
interacting with other community members. In a transformed system, individuals
are not just in the community, they become an integral part of the community, play-
ing valued social roles as tenants, students, workers, volunteers, family members,
and friends. Thus, there is an important role for the community to play in welcom-
ing, including, and supporting people with mental illness, rather than relying exclu-
sively on professionals and services (Lord & Hutchison, 2011; Trainor et al., 1999).

Theories of Transformative Change

Part II of the book provides conceptual resources for those interested in undertak-
ing transformative change initiatives. In the first chapter in this section, Bret Kloos
and colleagues (Chapter 2) provide a review of how community psychology theory
and history can be a resource to transformative change in CMH. They also define 10
key theoretical principles from community psychology that have implications for
transformative change. In Chapter 3, John Sylvestre reviews theories of transforma-
tive change from different disciplines, paying particular attention to the “levers” or
mechanisms of change. He goes on to consider the roles and skills that community
psychologists can play in creating transformative change, as well as providing more
general strategies and recommendations for how community psychologists can cre-
ate and sustain transformative change. In Chapter 4 in this section, Marybeth Shinn
brings forward the capabilities approach developed by Sen (1999) and philosopher
Nussbaum (2000) as a theoretical framework for understanding and transforming
the mental health system. She argues that community psychology contributes to
 Trans for mative Chang e in C ommuni t y Me ntal Health 13

the capabilities approach by focusing attention on the programs and settings that
foster capabilities for their participants and by developing measures of the extent
to which settings succeed in so doing. Shinn illustrates this approach with examples
from housing and employment programs that foster capabilities for mental health
consumers/survivors.

Indicators, Strategies, and Outcomes of Transformative Change

Here, we aim to specify more concretely what we mean by transformative change
using exemplars from this book. For us, transformative change in community mental
health means changes in the power relationships between mental health consumers/sur-
vivors and other stakeholders at multiple levels of analysis, such that consumers/survivors
have more power regarding decisions that impact their personal lives, the programs that
serve them, the ways that they can participate in the community, the social conditions
in which they live, and the policies that guide the programs that serve them. Moreover,
consumers/survivors are active participants in creating change at multiple levels of anal-
ysis, not passive recipients. We have organized this book along different ecological
levels, with different sections for each level:  services and practices, community,
social conditions, and policy. In Table 1.1, we provide an overview of indicators of
transformative change, strategies for creating it, and potential outcomes of it that we
elaborate on in this section.

Services and Practices

At the level of services and practices, transformative change means a shift in focus
from the treatment of illness and symptoms to the promotion of recovery and
consumer empowerment. In a transformed mental health system, consumers/sur-
vivors participate in all facets of services and practices (e.g., staffing, governance,
research), they have a strong voice in shaping services and practices, they operate
their own services, service-provider attitudes and practices focus on consumer
self-determination and empowerment, and services are noncoercive and character-
ized by power sharing.
Part IV of the book examines transformative change in services and practices. In
Chapter 7, Mary Ellen Copeland and Jessica Jonikas describe Wellness Recovery
Action Plans (WRAP) as an approach to self-management and recovery. These
plans were developed by mental health consumers/survivors. Research on the
effectiveness of WRAP and the dissemination of this approach are reviewed. In
Chapter 8 in this section, Tim Aubry and Mary O’Hagan describe the knowledge,
skills, and values required of service providers in a transformed system. They define
competencies in CMH practice, critically review research on practice competen-
cies, and present a list of competencies necessary for working effectively in a trans-
formed CMH setting, along with future directions for research needed to equip
Table 1.1  Indicators of Transformative Change, Strategies for Creating It, and Outcomes at Multiple Ecological Levels of Analysis
Ecological Level Some Indicators of Transformative
of Analysis Change
Services and Consumer participation in all facets
Practices of services and practices (e.g., staffing,
governance, research)
Changes in service-provider attitudes
and practices to focus on consumer
self-determination and empowerment
Community Inclusion of other community
stakeholders (not just service-providers)
in community support
Community integration into typical
community settings
Social Services extend beyond clinical
Conditions intervention to address social conditions
(e.g., housing, employment, education)
Empowered organizations that strive to
change social conditions
Policy Policies that promote consumer
participation, focus on recovery, and
address social conditions
Some Strategies for Creating Transformative
Change
Mandating, supporting, and creating
multiple opportunities for consumer
participation in mental health services
Identifying, training, and supporting staff
competences in consumer-directed services
Focusing on the whole community, not just
the individual mental health consumer
Working within typical community settings
to promote integration of consumers
Developing supported housing,
employment, and education
Collective action
Consumer movement and community
organizations advocate for progressive
policies
Some Potential Outcomes of
Transformative Change
Consumers develop new skills
and roles in operating their
own programs and mainstream
programs
Programs are fundamentally
changed through consumer
participation
Reduction in stigma
Consumers experience
enhanced sense of community
and develop relationships with
nonconsumers
New and innovative services are
developed
Changes in social conditions
(e.g., housing, employment)
Progressive changes in social
policies that benefit mental
health consumers
 Trans for mative Chang e in C ommuni t y Me ntal Health 15

service providers with these competencies. They also note the competencies that
are needed from a variety of other stakeholders to promote community integration.
In Chapter 9 in this section, Geoffrey Nelson and colleagues describe a partnership
in which several cultural communities participated in planning the creation of new
services or changing existing services to ones that were culturally relevant to these
stakeholders. Through a highly participatory process, services that were geared to
mainstream Anglo-Canadians were transformed to better serve new Canadians
from diverse backgrounds.

Community
It is not just services and mental health professionals that need to be changed to
achieve a transformed system, but communities as well. How to transform the com-
munity and reduce stigma and discrimination is the subject of the Part V of the
book. In Chapter 10, Bret Kloos and his colleagues describe their research on how
housing environments and neighborhood conditions can create new partnerships
that can support recovery and social inclusion through such vehicles as a supported
housing tenant organization and a landlord–service provider forum. They also
underscore the importance of social relationships and structural factors in mental
health and well-being and assert that community-centered priorities for mental
health programs and policies can promote opportunities for participation in com-
munity life. In Chapter 11 in this section, Mark Salzer and Richard Baron describe
theories underlying community integration, review research on community inte-
gration and strategies for enhancing community integration, and consider the chal-
lenges faced in promoting community integration. The Kloos et al. and Salzer and
Baron Chapters 10 and 11 analyze how communities can welcome and support
mental health consumers/survivors, helping them move from clients to citizens.
Contact between consumers, their neighbors, and other community members can
promote inclusion and reduce prejudice and discrimination.

Social Conditions
Community organizations are “mediating structures” that are strategically located
to create both larger systems change and to benefit individuals ( Janzen, Nelson,
Hausfather, & Ochocka, 2007; Maton & Brodsky, 2011). In Part VI of the book,
José Ornelas and colleagues, Chapter 12, describe how transformative change in a
CMH organization in Lisbon, Portugal led to the development of self-help groups,
and the creation of a national consumer network, supported employment, edu-
cation, and housing, including the first Housing First program outside of North
America. This occurred through a conscious shift in power sharing, consumer/sur-
vivor participation, alliances with community partners, and collaborative research.
As Ornelas et al. describe, community organizations have opportunities to push for
larger macrolevel changes in social conditions.
16 Overview of Community Psychology

Also in this section, Paula Goering and Sam Tsemberis (Chapter 13) demon-
strate the transformative potential of the Housing First approach for mental health
consumers/survivors and for larger social systems. They describe the principles,
essential operational ingredients, and research on Housing First and examine sys-
tems change in five Canadian communities that implemented Housing First in the
context of a research demonstration project. In Chapter 14 in this section, Karen
Ungar addresses education issues for mental health consumers/survivors. She uses
an ecological approach to understand both personal and environmental change
in the context of supported education programs in universities. Striving to create
changes in social conditions leads to a focus on citizenship rather than “clienthood,”
including the valued social roles of employee, tenant, and student, which can be
promoted through supported employment, housing, and education.

Policy
In Part VII of the book, John Trainor and David Reville (Chapter 15) tell the story
of the development of a network of Consumer/Survivor Initiatives in Ontario.
They show that this policy initiative followed the emergence of a consumer/­
survivor voice and its important role in the policy debate about what mental health
services should look like and who should have control over them. In Chapter 16 in
this section, Myra Piat and Lauren Polvere demonstrate that the concept of recov-
ery has made its way into policy formulations in mental health in several countries.
Although this appears to be a positive sign of change, it is unclear what this recov-
ery orientation actually looks like on the ground for mental health consumers.
Does it lead to greater consumer power and access to valued resources? Edelman
(1977) cautioned that political language is often used to camouflage a lack of tan-
gible changes in policy. In this regard, Davidson, O’Connell, Tondora, Lawless,
and Evans (2005) have questioned whether the concept and practice of recovery
is really a new wine or merely an old wine in a new bottle. Transformative change
initiatives need to document empirical evidence of tangible changes in consumers’
lives and system practices, as well as challenge language and policy statements.
It is also important to look at policy changes across sectors. In this regard,
Forchuk et al. (2007) found that although mental health policies in Canada have
become more progressive since the 1980s, policies related to housing and income
support for people with disabilities have become more regressive. Mental health
policies in Ontario, for instance, have emphasized the need for housing and income
support, but in the mid-1990s the Ontario government cut income supports and
shifted responsibility for housing and the personal needs allowance for people liv-
ing on disability assistance to municipalities. Wilton (2004) analyzed these changes
in terms a neoliberal framework of citizenship as “more responsibility and less con-
trol.” Beleaguered municipalities, like the city of Hamilton, enacted further cuts to
subsidies for low-income citizens with mental health issues by eliminating free bus
 Trans for mative Chang e in C ommuni t y Me ntal Health 17

passes. In a qualitative study, Wilton (2004) found that mental health consumers
were negatively impacted by these policy changes in many ways (e.g., basic needs,
social relations, leisure). The case of Ontario provides a good illustration of the
need for an ecological, power analysis of transformative change. Macrolevel policies
based on a neoliberal ideology increased inequities that, in turn, reduced the capac-
ities of local government and communities to support mental health consumers.
Thus, there is a need to examine the policy ecology because policies across sectors
can have synergistic or dampening effects.

Transformative Research for Transformative Change

In Part VIII, recent Ph.D. graduate Nev Jones and graduate students Jay Harrison,
Rita Aguiar, and Lauren Munro (Chapter 17) discuss mental health consumer/
survivor research. They provide a rationale for why consumer/survivor research is
important, and they make recommendations for how community-based c­ onsumer/
survivor research can be supported and how academia can train and support
­consumer/survivor researchers.

The Audiences for This Book

This book is directed at the community of community psychologists, including
community psychology students. The book provides the field with a review of com-
munity psychology’s role in CMH and directions for the future. We hope to capture
the imagination of community psychology students to pursue work in CMH. We
believe the book should be of value to allied disciplines in mental health, particu-
larly social work because some graduates of master’s degree programs in social work
end up working in CMH settings. This introduction to a community psychology
perspective on transformative change in CMH should resonate with social work
students. We have also constructed the book to have a broad appeal to people who
currently work in the field of CMH, including mental health policy makers, plan-
ners, and practitioners, as well as consumers/survivors and family members.
The book provides specific exemplars of changes in CMH at the levels of men-
tal health services and practices, community settings, social conditions, and policy.
Moreover, this volume provides theoretical justification and a conceptual frame-
work for understanding and creating transformative change in CMH. Particularly
unique features of the book are the recognition that strategies for making changes
in these systems requires deliberate, systematic, and sustained effort. We draw from
experience in different countries in recognition of the need to tailor change strate-
gies to the contextual conditions of each setting. The common experiences of the
international perspectives represented in this book underscore the importance and
need for a new paradigm while demonstrating that there are many alternatives and
opportunities for pursuing transformative change. We hope the readers of this book
18 Overview of Community Psychology

take inspiration from the lessons learned by people in the field about making trans-
formative change. Bon appetit!

References
Ahern, L., & Fisher, D. (2002). Personal assistance in community existence: Recovery at your own pace.
Lawrence, MA: National Empowerment Center.
Barrera, M. (2000). Social support research in community psychology. In J. Rappaport  & E.
Seidman (Eds.), Handbook of community psychology (pp. 215–245). New  York:  Kluwer
Academic/Plenum.
Bellack, A. S. (2004). Skills training for people with severe mental illness. Psychiatric Rehabilitation
Journal, 27, 375–391.
Bellack, A. S. (2006). Scientific and consumer models of recovery in schizophrenia: Concordance,
contrasts, and implications. Schizophrenia Bulletin, 32, 432–442.
Borkman, T.  J. (1999). Understanding self-help/mutual aid:  Experiential learning in the commons.
Piscataway, NJ: Rutgers University Press.
Bronfenbrenner, U. (1977). Toward an experimental ecology of human development. American
Psychologist, 32, 513–531.
Burns, T. (2004). Community mental health teams. Psychiatry, 3, 11–14.
Burti, L. (2001). Italian psychiatric reform 20 plus years after. Acta Psychiatrica Scandinavica,
104(Supplement 410), 41–46.
Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric disabili-
ties. New York: Guilford Press.
Chamberlin, J. (1978). On our own:  Patient-controlled alternatives to the mental health system.
New York: McGraw-Hill.
Chamberlin, J. (1990). The ex-psychiatric patients’ movement: Where we’ve been and where we’re
going. Journal of Mind and Behavior, 11, 323–336.
Corrigan, P. W., & Penn, D. L. (1999). Lessons from social psychology on discrediting psychiatric
stigma. American Psychologist, 54, 765–776.
Corrigan, P. W., Salzer, M., Ralph, R. O., Sangster, Y., & Keck, L. (2004). Examining the factor struc-
ture of the Recovery Assessment Scale. Schizophrenia Bulletin, 30, 1035–1041.
Davidson, L., Drake, R. E., Schmutte, T., Dinzeo, T., & Andres-Hyman, R. (2009). Oil and water or
oil and vinegar? Evidence-based medicine meets recovery. Community Mental Health Journal,
45, 323–332.
Davidson, L., O’Connell, M. J., Tondora, J., Lawless, M., & Evans, A. C. (2005). Recovery in serious
mental illness: A new wine or just a new bottle? Professional Psychology: Research and Practice,
36, 480–487.
Deegan, P. (1988). Recovery:  The lived experience of rehabilitation. Psychosocial Rehabilitation
Journal, 11(4), 11–19.
Edelman, M. J. (1977). Political language: Words that succeed and policies that fail. New York: Academic
Press.
Forchuk, C., Turner, K., Joplin, L., Schofield, R., Csiernik, R.,  & Gorlick, C. (2007). Housing,
income support and mental health:  Points of disconnection. Health Research Policy and
Systems, 5, 14, open access.
Foster-Fishman, P.  G., Berkowitz, S.  L., Lounsbury, D.  W. Jacobson, S.  & Allen, N.  A. (2001).
Building collaborative capacity in community coalitions: A review and integrative framework.
American Journal of Community Psychology, 29, 241–261.
Foucault, M. (1969/2002). Archaeology of knowledge. New York: Routledge.
Gomory, T. (1999). Programs of Assertive Community Treatment (PACT):  A  critical review.
Ethical Human Sciences and Services, 1, 147–163.
 Trans for mative Chang e in C ommuni t y Me ntal Health 19

Humphreys, K., & Rappaport, J. (1993). From the community mental health movement to the war
on drugs: A study in the definition of social problems. American Psychologist, 48, 892–901.
Janzen, R., Nelson, G., Hausfather, N.,  & Ochocka, J. (2007). Capturing system level activities
and impacts of mental health consumer-run organizations. American Journal of Community
Psychology, 41, 4–21.
Kelly, J.  G. (1966). Ecological constraints on mental health services. American Psychologist, 21,
535–539.
Leete, E. (1989). How I perceive and manage my illness. Schizophrenia Bulletin, 15(2), 197–200.
Lehman, A.  F. (2010). Adopting evidence-based practices—our hesitation waltz. Schizophrenia
Bulletin, 36, 1–2.
Lord, J., & Hutchison, P. (2011). Pathways to inclusion: Building a new story with people and communi-
ties (2nd Ed.). Concord, ON: Captus Press.
Maton, K.  I.,  & Brodsky, A.  E. (2011). Empowering community settings:  Theory, research, and
action. In M. S. Aber, K. I. Maton, & E. Seidman (Eds.), Empowering settings and voices for social
change (pp. 38–64). New York: Oxford University Press.
Mead, S., Hilton, D., & Curtis, L. (2001). Peer support: A theoretical perspective. Psychiatric
Rehabilitation Journal, 25(2), 134–141.
Morgan, J. (2008). Psychology in the community: A community psychologist looks at 30 years in
community mental health. Journal of Prevention and Intervention in the Community, 35, 29–43.
Mueser, K. T., Bond, G. R., Drake, R. E., & Resnick, S. G. (1998). Models of community care for
severe mental illness: A review of research on case management. Schizophrenia Bulletin, 24,
37–74.
Newberry, D. J., & Strong, A. D. (2009). Beyond mental health maintenance: An evaluation frame-
work driven by recovery-focused outcomes. Canadian Journal of Community Mental Health,
28, 73–94.
Nelson, G., & Grant, J. (2011). Consumer participation in mental health services. In E. R. Vingilis &
S. A. State (Eds.), Applied research and evaluation in community mental health services (pp. 129–
145). Montreal and Kingston: McGill-Queen’s University Press.
Nelson, G., Janzen, R., Trainor, J., & Ochocka, J. (2008). Putting values into practice: Public policy
and the future of mental health consumer-run organizations. American Journal of Community
Psychology, 42, 192–201.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
Nelson, G.,  & Prilleltensky, I. (Eds.). (2010). Community psychology:  In pursuit of liberation and
well-being (2nd Ed.). Basingstoke, UK: Palgrave.
Nussbaum, M.  C. (2000). Women and human development:  The capabilities approach.
New York: Cambridge University Press.
O’Connell, M., Tondora, J., Croog, G., Evans, A., & Davidson, L. (2005). From rhetoric to rou-
tine: Assessing perceptions of recovery-oriented practices in a state mental health and addic-
tion system. Psychiatric Rehabilitation Journal, 28, 378–386.
Ornelas, J., Vargas-Moniz, M.,  & Duarte, T. (2010). Community psychology and social
change:  A  story from the field of mental health in Portugal. Global Journal of Community
Psychology Practice, 1(1), 21–31. Retrieved January 25, 2011, from www.gjcpp.org/.
Rappaport, J. (1977). Community psychology: Values, research, and action. New York: Holt, Rinehart
and Winston.
Rappaport, J. (1981). In praise of paradox:  A  social policy of empowerment over prevention.
American Journal of Community Psychology, 9, 1–25.
Rappaport, J. (1987). Terms of empowerment/Exemplars of prevention: Toward a theory for com-
munity psychology. American Journal of Community Psychology, 15, 117–148.
Rappaport, J. (1992). The death and resurrection of a community mental health movement. In
M. Kessler, S. E. Goldston, & J. M. Joffe (Eds.), The present and future of prevention: In honor
of George W. Albee: The Vermont Conference Series on the primary prevention of psychopathology
(vol. 15, pp. 78–98). London: Sage.
20 Overview of Community Psychology

Reich, S. M., Riemer, M., Prilleltensky, I., & Montero, M. (Eds.). (2007). The history and theories of
community psychology: An international perspective. New York: Springer.
Rogers, E. S., Ralph, R. O., & Salzer, M. S. (2010). Validating the empowerment scale with a multi-
site sample of consumers of mental health services. Psychiatric Services, 61, 933–936.
Rowe, M., Kloos, B., Chinman, M., Davidson, L., & Cross, A. B. (2001). Mental illness, homeless-
ness and citizenship. Social Policy and Administration, 35, 14–31.
Salyers, M. P., & Tsemberis, S. (2007). ACT and recovery: Integrating evidence-based practice and
recovery orientation on Assertive Community Treatment teams. Community Mental Health
Journal, 43, 619–641.
Sen, A. (1999). Development as freedom. New York: Knopf.
Spindel, P. (2000). Polar opposites:  Empowerment philosophy and Assertive Community
Treatment (ACT). Ethical Human Sciences and Services:  An International Journal of Critical
Inquiry, 2, 93–100.
Trainor, J., Pomeroy, E., & Pape, B. (1997). The knowledge resource base: Expanding our under-
standing of serious mental illness. Canadian Journal of Community Mental Health, 16(1),
109–116.
Trainor, J., Pomeroy, E., & Pape, B. (Eds.). (1999). Building a framework for support: A community
development approach to mental health policy. Toronto: Canadian Mental Health Association/
National Office.
Trickett, E. J., & Espino, S. L. R. (2004). Collaboration and social inquiry: Multiple meanings of a
construct and its role in creating useful and valid knowledge. American Journal of Community
Psychology, 34, 1–69.
Watzlawick, P., Weakland, J., & Fish, R. (1974). Change: Principles of problem formation and problem
resolution. New York: Norton.
Wilton, R. (2004). More responsibility, less control: Welfare state restructuring and the citizenship
of psychiatric consumer/survivors. Disability and Society, 19, 329–342.
Wolff, T. (2010). The power of collaborative solutions:  Six principles and effective tools for building
healthy communities. San Francisco: Jossey Bass.
Yanos, P. (2007). Beyond “Landscapes of Despair”: The need for new research on the urban devel-
opment, sprawl, and the community integration of persons with severe mental illness. Health
and Place, 13, 672–676.
Zimmerman, M. A., & Rappaport, J. (1988). Citizen participation, perceived control, and psycho-
logical empowerment. American Journal of Community Psychology, 16, 725–750.
 PA RT T W O

THEORETICAL PERSPECTIVES
ON TRANSFORMATIVE CHANGE
 2

Community Psychology History

and Theory as Resources
for Transformative Change
in Community Mental Health
bret kloos, josé ornel as, and geoffrey nelson

In this book, we encourage mental health practitioners, consumers, advocates,

researchers, and policy makers to promote community mental health (CMH) in
new ways. Although many of the ideas presented in this volume have already been
introduced, we have not fully learned the lessons that are relevant from these experi-
ences; in some cases, we have forgotten or even overlooked these lessons. The pur-
pose of this chapter is to recover insights, innovations, and goals that can inform
new efforts to promote transformative change. In particular, we draw on community
psychology for principles and historical examples that can guide a new movement
for transformative change in CMH. From its beginning, community psychology has
been an interdisciplinary field seeking to learn from other disciplines and from col-
laborative efforts with many stakeholders. We hope that this chapter and others in
the book will promote conversations and actions that draw from many perspectives
and disciplines to advance transformative change.
We begin the chapter by reviewing the relationship between community psy-
chology and CMH in different national contexts. In this brief review, we consider
several examples of innovations that illustrate the promise of using community
psychology principles to advance mental health promotion. Next, we consider
community psychology theories as resources for planning and implementing trans-
formative change. We organize the selected community psychology theories into
two sections: (1) principles that can change how we view our work and (2) those
that can change how we do our work. Because implementing transformative change

23
24 Per spectives on Transformative Change

is challenging, we close the chapter by comparing four historical examples in differ-

ent national contexts. We draw lessons from these comparisons that can guide new
efforts.

Community Psychology History as a Resource

for Transformative Change
Although some histories are used to reminisce or celebrate past events, we view his-
tory as a resource that might inspire new efforts, inform implementation, or warn
of challenges that will need to be addressed. Psychology and related mental health
fields often do not exam their histories and have been described as being too often
naïvely ahistorical (Sarason, 1981). Here, we reflect on community psychology
history to help navigate and promote transformative change rather than reinforce
unexamined the CMH status quo. Of course, a single account cannot cover every
important development in all relevant disciplines. We draw on community psychol-
ogy as a subdiscipline with much to offer, one that is currently underappreciated in
CMH, even though their histories have often intertwined.

Relationships Between Community Psychology

and Community Mental Health
Sweeping changes in systems of mental health care were instrumental to the emer-
gence of community psychology in many countries (Ornelas, 2008; Reich, Riemer,
Prilleltensky, & Montero, 2007; Sarason, 1988). In the United States, these changes
began after World War II, as a flood of veterans returned to civilian life traumatized
by combat. The creation of US Veterans Administration (VA) and an expansion
of clinical psychology and psychiatry training programs were federal policy initia-
tives to care for this unprecedented numbers of veterans with medical (including
mental) disorders, and the US National Institute of Mental Health (NIMH) was
established to coordinate funding for mental health research and training (Kelly,
2003). Also emerging in postwar societies were movements to reform the quality of
mental health care (Levine, 1981; Sarason, 1974) and reduce the reliance on large
mental health hospitals. Journalistic accounts and films in several countries have
documented both the inhumane conditions in psychiatric hospitals and the citizen
groups advocating for their reform. The emergence and widespread use of psycho-
tropic medications was used as a justification for moving mental health policy away
from prolonged hospitalization as a primary mode of intervention, thus strengthen-
ing reform efforts. Over the past 50 years, the number of regional mental hospi-
tals has been greatly reduced throughout most industrialized countries, with many
closed and deemed not worth reforming (Kloos, 2010). Between 1972 and 1982,
the number of hospitals with more than 1,000 psychiatric beds was reduced by
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 25

50–80% in Denmark, England, Ireland, Italy, Spain, and Sweden (Freeman, Fryers,
& Henderson, 1985), and similar patterns occurred in North America and Australia
(Carling, 1995; Newton et al., 2000). Concurrent with deinstitutionalization,
however, the number of persons receiving mental health treatment for psychiatric
disabilities has increased greatly in the past 50 years; Whitaker (2005) presents evi-
dence from the Social Security Administration of a fivefold increase in the United
States from 1955 to 2003. With so many large mental hospitals closing and such
large increases in persons using mental health services, new models of care were
needed.
Several founders of community psychology were instrumental in the search
for new models of care. In 1961, the federally sponsored US Joint Commission
on Mental Illness and Mental Health recommended sweeping changes in men-
tal health care ( Joint Commission, 1961). In one of the Commission’s studies, a
founder of US community psychology, George Albee (1959), reviewed research
that documented surprisingly high rates of mental disorders and the high costs of
training clinical professionals. He concluded that society could never afford to train
enough professionals to provide clinical care for all who needed it. Albee and others
called for the development of an alternative model for responding to mental health
needs, one that emphasized prevention rather than having a sole focus on treatment.
Furthermore, Austrian-born social scientist Marie Jahoda’s Joint Commission
Report (1958) advocated for broader conceptualizations of “mental illness” by
articulating the positive qualities of mental health. Along with other commission
members, she called for a model of care that would identify conditions that inhibit
personal mental health and would seek to alter those conditions through preven-
tion and social change (Albee, 1995; Kelly, 2003). Interestingly, in their final report,
most Joint Commission members remained committed to individualized profes-
sional treatment (Levine, 1981). Full realization of these early conceptualizations is
part of the focus of this book.
As a response to the Joint Commission report, the US NIMH proposed a
national system of community mental health centers (CMHCs; Goldston, 1994;
Levine, 1981). Through advocacy by the NIMH and the National Mental Health
Association, and with the support of President Kennedy whose sister suffered from
a mental disorder, Congress passed the Community Mental Health Centers Act in
1963. Community mental health centers (CMHCs) had a different mandate than
traditional psychiatric hospitals: care for persons with mental disorders in the com-
munity, crisis intervention, consultation with community agencies (e.g., human
services, police, schools), and the development of prevention programs (Goldston,
1994; Levine, 1981). In many countries, similar CMHCs were founded to care
for serious mental health problems within the communities where people lived
rather than moving individuals to remote hospitals for treatment (Kloos, 2010).
The implementation of the CMHC approach became a catalyst for the formation of
community psychology in the United States by psychologists who wanted to extend
26 Per spectives on Transformative Change

the CMHC mission of addressing the mental health needs of persons in communi-
ties rather than solely focus on the management of those identified as mentally ill.
This new model of addressing mental health concerns in community settings
required new models of education. In May 1965, 39 psychologists gathered in
Swampscott, Massachusetts, to discuss training psychologists for new systems to
promote CMH (Bennett et al., 1966). Most persons in the group described them-
selves as atypical psychologists because their interests had been transformed by
their experiences into a desire to extend their involvement in community settings.
Their discussions became the founding event for a new, broader field of commu-
nity psychology in the United States. The new field would concern “psychological
processes that link social systems with individual behavior in complex interaction”
(Bennett et al., 1966, p. 7). The new field would not be limited to mental health
issues or settings, and it would be distinct from CMH, although the two would
overlap. Community psychologists could act as community change agents, as
well as conduct research on the effectiveness of those efforts. These new priorities
required a conceptualization of new roles for those interested in promoting mental
health:  consulting with schools and community agencies, developing prevention
programs, advocating for community and social change, and collaborating with citi-
zens (Bennett et al., 1966).
After Swampscott, US community psychology gradually developed its own dis-
tinctive identity and diverged from CMH (Heller  & Monahan, 1977; Levine  &
Perkins, 1987). The promise of collaboration between CMH and community psy-
chology was largely unrealized 10 years after the founding of CMH. Emory Cowen’s
(1973) Annual Review of Psychology chapter, “Social and Community Interventions”
(the first devoted to this topic) found that fewer than 3% of CMH research articles
had a prevention focus. Nonetheless, he called for more emphasis on prevention,
which was consistent with the early adoption of public health perspectives to com-
munity psychology. Cowen identified a number of interventions focused on dis-
advantaged populations and collaboration with local citizens. Julian Rappaport
(1977) made persuasive arguments that the field of community psychology needed
to focus on its values to guide research and social action. In summarizing the first
10 years of the field’s development, Rappaport proposed valuing human diversity,
collaboration, social justice, and a focus on strengths rather than deficits as unify-
ing concepts to guide the field’s value in empirical investigation of social problems.
A few years later, Rappaport (1981) extended these ideas to argue that an emphasis
on a community’s self-determination and empowerment was as vital to the field of
community psychology as prevention. Finally, Barbara Dohrenwend (1978/2002)
proposed an influential framework for an ecological model of stress and coping that
integrated many of the emerging themes in community psychology and provided a
guide for intervention. Many of these concepts are now familiar notions but were
innovations at the time. These advancements were critical in helping community
psychologists define the field and articulate its core values, and they were thought
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 27

to distinguish community psychology from CMH. In this book, we explore how

these innovations can help inform a new model of mental health in the community.
In Australia, New Zealand, and Canada, disenchantment with purely clinical
concepts of human problems was important for the development of community
psychology in those countries. Canada has a four-decade history of community psy-
chology that shares many of the conditions that were formative for the field in the
United States but that have developed uniquely Canadian features. Nelson, Lavoie,
and Mitchell (2007) suggest that there have been six main areas of emphasis in
Canada: values and ethics, CMH, health promotion and prevention, social network
intervention, promotion of inclusion, and community economic development. In
northern Europe and Australia, the development of community psychology par-
alleled many developments in the United States and Canada for extending CMH
and eventually also branched out into other areas (Reich et al., 2007). Portugal and
Italy have rich histories of community psychology research and intervention. The
development of community psychology coincided with movements to create a new,
decentralized model for health services. As we describe later, the role of community
psychologists varied in the developments of CMH in these countries.
Unfortunately, the aspirations of these mental health reforms are largely unre-
alized in CMH or community psychology. As presented in Chapter 1, CMH has
become more focused on the treatment and amelioration of individual problems.
Community mental health has focused on care for persons with mental disorders
in the community and to some extent crisis intervention, but these services have
emphasized treating individuals’ deficits rather than prevention. Symptom reduc-
tion is addressed, but promotion of health is rarely an emphasis. Maintenance of
functioning through the lowest cost service possible is too often the goal, rather than
recovery and adaptive functioning in least restrictive settings. The primary under-
standing of CMH as a service has emphasized medical and clinical notions rather
than other possible views of caring for the health of a population in a catchment
area, such as using public health, social work, prevention, and community psychol-
ogy. In the United States, the original CMH tasks of consultation with community
agencies (e.g., human services, police, schools) and the development of prevention
programs are largely unrealized from the initial legislation creating CMHCs. Finally,
the social aspects of mental illness and psychiatric disability are largely unaddressed
by most contemporary CMH initiatives.

Reduced Interest in Community Mental Health?

A critical examination of community psychology’s history raises questions of
whether the development of community psychology as a field has neglected per-
sons with lived experience of mental health problems. Although a common interest
of many early community psychologists, the relative focus of research publications
suggests that community psychology has reduced its focus on mental health and
28 Per spectives on Transformative Change

working to promote well-being of persons with psychiatric disabilities over the past
four decades (Lounsbury, Leader, Meares, & Cook, 1980; Martin, Lounsbury, &
Davidson, 2004; Speer et al., 1992). Perhaps efforts to differentiate the new field
from CMH discouraged some community psychologists from working on issues
associated with CMH. Criticisms of clinical practices may have led some commu-
nity psychologists to overlook the challenges of persons with psychiatric diagno-
ses as appropriate foci for their own work. Alternatively, community psychology’s
emphasis on prevention may have seemed antithetical to addressing the concerns
of persons who already have diagnosed problems. However, these explanations
for reduced levels of involvement by community psychology with the concerns of
persons diagnosed with psychiatric disabilities are misguided in that they uncriti-
cally accept the problem definitions and parameters of intervention coming from
dominant modes of addressing mental illness. As the next section recounts, a small
number of community psychologists have continued to apply developments in the
field to address the well-being of persons with psychiatric disabilities and promote
their opportunities for participating in community life.

Community Psychology Innovations Relevant

for Transformative Change
Expanding the Focus of Mental Health
An early co-founder of community psychology in the United States, Emory Cowen
was very influential in expanding conceptualizations of mental health care through-
out his career. Along with numerous colleagues and students, he tested new ways to
work in community settings, developed new partnerships for addressing the men-
tal health needs of individuals, and proposed new ways of thinking about mental
health prevention and the promotion of wellness (Cicchetti, Rappaport, Sandler, &
Weissberg, 2000; Cowen, 1994/2002). The Primary Mental Health Project
(PMHP) and the Center for Community Study at the University of Rochester were
milestone projects in developing new modes of intervention to help children in
need. Cowen believed that early identification of young children with academic,
behavioral, or emotional problems and prompt intervention would forestall later,
more intractable problems. He and his co-workers also believed that paraprofes-
sionals could build positive relationships with at-risk children and help them learn
key coping skills that achieve outcomes equal to those of professional services
(Kloos, Hill, Thomas, Wandersman, Elias, & Dalton, 2012).

The Importance of Nonprofessionals in Community Mental Health

Of particular interest to CMH and consumer/survivor movements today, Cowen
and his colleagues challenged conventional understandings that professionals were
the only qualified persons who could promote mental health. Albee’s critique of the
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 29

“manpower” requirements in mental health services created a quandary for how to

deliver mental health care, given the large unaddressed need for services (Hobbs,
1964). Through several studies focused on the training of paraprofessionals work-
ing in schools and psychiatric hospitals, Cowen and colleagues laid an empirical
foundation 40  years ago to justify the training of peer providers and paraprofes-
sionals (Chinsky & Rappaport, 1970; Rappaport, 1977). Dozens of studies with
psychiatric inpatient adults, outpatient adults, outpatient adolescents, and children
document the effectiveness of trained and supervised paraprofessionals compared
to control conditions of no or minimal treatment (Durlak, 1979). Furthermore,
several studies found that trained and supervised nonprofessionals helped clients
achieve the same or better outcomes than professional therapists (Durlak, 1979).
In no cases were the trained and supervised nonprofessionals less effective than the
professionals (Rappaport, 1977).

Creating New Empowering Settings to Promote Mental Health

A contemporary of Cowen, George Fairweather and colleagues at the Palo Alto
(California) VA hospital also sought new models of care that could assist per-
sons being discharged from long-term mental hospitals. The Community Lodge
model (Fairweather, 1979; 1994; Fairweather, Sanders, Maynard,  & Cressler,
1969) went further than the work with nonprofessionals in seeking to create set-
tings that could empower persons with psychiatric disabilities to support each
other and live outside of the institutional care of hospitals. Furthermore, these
Lodges went on to develop their own self-governing structures, and many devel-
oped businesses. Interestingly, they, too, documented better long-term outcomes
in functioning and in preventing episodes of crisis care than did the standard care
of the time. The Lodge model was an early influence on community psychology
and CMH, with its emphasis on collaborative relationships, empowerment, pro-
gram development, systematic experimental assessment of interventions, and
efforts to disseminate innovation (Kloos et al., 2012). We provide an extended
presentation of the Fairweather Lodge in our case studies of challenges to trans-
formative change in the final section.

The Importance of Mutual Support

Another set of community psychology studies have helped to prepare the articula-
tion of a new model of CMH. Rappaport and colleagues were invited to conduct
research with GROW, an international mutual aid organization with more than 800
groups worldwide, primarily in Australia and the United States. GROW focuses
on the potential for persons with mental health treatment experience to support
each other through mutual support organizations. This rigorous research on mutual
aid/self-help groups has shown that people participating actively in the groups had
larger social networks (Rappaport et al., 1985) and better social adjustment than
30 Per spectives on Transformative Change

did people who were not active in groups (Roberts et  al., 1991). GROW mem-
bers also had shorter hospital stays than matched comparisons (Rappaport, 1993).
The research found that weekly attendees of meetings experienced more positive
changes in psychological, interpersonal, and community adjustment than did
infrequent attendees. Compared with matched controls, GROW members spent
fewer than half as many days in psychiatric hospitalization over a 32-month period
(Kennedy, 1989; Rappaport, 1993). Rappaport (1993) argued that a more reveal-
ing view of such groups is that they are normative communities, providing a sense of
belonging, identification with the group, and mutual commitment: a psychological
sense of community.

Current Community Psychology Initiatives Relevant to Community Mental Health

These examples and the emergence of consumer/survivor movements have
helped to pave the way for a resurgence of community psychology research and
intervention focused on improving the lives of persons with psychiatric disabili-
ties. Leonard Jason and colleagues have conducted research with Oxford Houses, a
mutual help, self-governed, communal living arrangement for persons in substance
abuse recovery. These houses have many positive health benefits for residents and
for the communities where they are located. Research has documented how the
Oxford House leadership has counteracted neighbors’ concerns about living near
a “halfway house” by focusing on improving the community around them, as well
as themselves ( Jason et al., 2008). Tsemberis and colleagues developed a Housing
First program that put homeless persons diagnosed with psychiatric disabilities
directly into apartments (Stefancic & Tsemberis, 2007; Tsemberis, Moran, Shinn,
Asmussen  & Shern, 2003). Furthermore, the importance of quality housing and
neighborhood conditions in well-being and functioning of persons with psychi-
atric disabilities is receiving increasing attention (Kloos  & Shah, 2009; Nelson,
Sylvestre, Aubry, George,  & Trainor, 2007; Sylvestre, Nelson, Sabloff,  & Peddle,
2007; Townley & Kloos, 2011). Cathy Stein and colleagues have focused on rela-
tionships with families and the need for community institutions to better accom-
modate persons with mental health challenges (Stein, Dworsky, Phillips, & Hunt,
2005; Stein, Ward, & Cislo, 1992; Stein & Wemmerus, 2001). Opportunities for
empowerment in mental health services, consumer choice, and opportunities for
community inclusion are informing new program development (Aubry & Myner,
1996; Salzer, 1997; Ornelas, Vargas-Moniz, & Duarte, 2010). Several community
psychologists are extending mutual support and self-help approaches to address
the needs of persons with mental health treatment experiences that are not ade-
quately addressed by current CMH systems (e.g., Borkman, 1976; 1999; Brown,
Shepherd, Wituk, & Meissen, 2008; Meissen, Powell, Wituk, Girrens, & Arteaga,
1999; Salem, Gant, & Campbell, 1988; Salem, Reischl, Gallacher, & Randall, 2000;
Salzer, Rappaport, & Segre, 2001).
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 31

Community Psychology Theory as Resource for

Transformative Change
As reviewed in Chapter  1, the establishment of consumer/survivor liberation
movements and their articulation of a vision for recovery have encouraged commu-
nity psychologists to develop a new community psychology of CMH that is consis-
tent with Rappaport’s (1992) vision of a CMH movement with an empowerment
agenda. For example, Nelson, Lord, and Ochocka (2001) proposed a new para-
digm in CMH that focuses on empowerment, inclusion, and social justice. Running
through these historical accounts are shared community psychology values and
theory that allow for innovation while being grounded in improving lives for people
who have been socially disadvantaged. Here, we review the community psychology
theories most relevant for transformative change in CMH.

Key Community Psychology Principles for a New Paradigm of

Community Mental Health
Community psychology has long emphasized the role that values and concep-
tual frameworks play in guiding problem definition, intervention, and research
(Rappaport, 1977). Here, we provide an overview of 10 principles of community
psychology as resources for developing a new paradigm of CMH that promotes
transformative change of systems and individuals. We organize these principles into
two groups: we present theories that can (a) change how we view our work followed
by theories that can (b) change how we do our work. Of course, these groupings are
somewhat arbitrary, but they are meant to promote discussion rather than defini-
tively classify the theories.

Resources for Changing How We View Our Work

Promotion of well-being and health. Well-being is not restricted only to the manage-
ment of symptoms, but also involves the development of personal resources to cope
with everyday challenges and promote physical and mental health. Emory Cowen
(1994/2002) proposed that the promotion of wellness become the overarching
metaphor for community psychology intervention. The development of a goal of
recovery from the consumer/survivor movement helps to extend community psy-
chology’s interest in wellness, or well-being, for persons with mental health chal-
lenges. In applying a well-being perspective to CMH, individual and social processes
of recovery become a central focus as people learn to use strategies that help main-
tain their well-being. Friends and peers, work, creative activities, sports and healthy
lifestyles, holistic health methods, and spirituality provide important supports that
help people feel good and healthy (Copeland, 2002; Deegan, 1993). Fisher (1998)
distinguishes between self-care management and treatment plans:  “self-managed
32 Per spectives on Transformative Change

care is driven by consumers, involves several levels, and is planned on the basis of
genuine potential to help people gain a role in society. This design contrasts with
the treatment planning based on maintenance, which is by nature directed by pro-
fessionals to correct the pathology” (p. 37). One example of a self-help guide to
well-being is the Wellness Recovery Action Plan (WRAP) developed by Copeland
(2002) from her personal experience.
Social inclusion and community integration. Involvement in meaningful activities
and the development of valued social roles are crucial dimensions for CMH and
recovery (Ahern & Fisher, 2002; Onken, Craig, Ridgway, Ralph, & Cook, 2007;
Young & Ensing, 1999). Several community psychologists have focused on how to
promote opportunities for inclusion and how this better serves service programs
and policies (Aubry  & Myner, 1996; Rappaport, 1977, 1981). In the process of
recovery, people try to break the social isolation that is too often associated with
mental health challenges. By engaging in community activities, individuals can gain
significant social roles beyond being a mental health services client. Furthermore,
employment, education, mutual help, and neighborhood organizations are contexts
that promote interpersonal relations, personal development, and opportunities
to help others and the community. These participatory processes can strengthen
social identity and the social status of consumers/survivors. They can foster a sense
of belonging and be mechanisms to combat stigma and discrimination (Ahern &
Fisher, 2002; Corrigan & Kleinlein, 2005; Ridgway, 2001).
Focus on strengths, opportunities, and resources. One of the most emblematic fea-
tures of the recovery process is regaining a sense of personal identity that transcends
mental health challenges (Ahern & Fisher, 2002, Davidson, 2003; Deegan, 1988).
Community psychology has long advocated for a focus on strengths as necessary
to avoid deficit models of intervention (Rappaport, Davidson, Wilson, & Mitchell,
1975; Ryan, 1971). Many consumers/survivors reported that, in the past, they
felt completely immersed in their disease, defined and treated almost exclusively
in terms of their psychiatric problems and losing the sense of their strengths and
personality (Allott  & Loganathan, 2002; Estroff, 1989). This role is reinforced
by a mental health system historically characterized by profound asymmetries of
power that reduce personal expectations and promote passivity and resignation.
In broader social contexts, the implicit and explicit processes of stigma also have
devastating effects on individual identity (Barham & Hayward, 1998; Corrigan &
Kleinlein, 2005).
In recovery processes, people can develop more positive personal identities,
and mental health system efforts can focus on strengths that help individuals
develop. As Ahern and Fisher (2002) state:  “We need to leave behind the frag-
mented, isolated identity of the mental patient and regain the feeling of being a full
human being. This positive identity is important to recovery of a valued place in
society” (p. 10). Based on several qualitative studies, Davidson (2003; Davidson,
Sells, Sangster, & O’Connell, 2005) found that a focus on personal strengths and
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 33

opportunities appears to allow people to be involved in significant activities and

develop valued social roles and relationships. These life experiences “outside psy-
chiatric disabilities” (Davidson, 2003) can contribute to increased resilience, the
perception of self-efficacy and empowerment, and the enhancement of personal
identity (Ahern & Fisher, 2002, Davidson et al., 2005).
Social justice. Most of the challenges that consumers/survivors face in their daily
life can be attributed to the effects of stigma, discrimination, unemployment, pov-
erty, and social isolation (Chamberlin & Fisher, 2008, Davidson et al., 2005). As
a guiding value of community psychology, social justice has focused on distribu-
tive justice (e.g., access to resources) and procedural justice (e.g., how decisions are
made, ideally in an inclusive manner; Fondacaro & Weinberg, 2002; Prilleltensky &
Nelson, 2009). Access to employment, education, housing, and other resources
that are available in the community for all citizens is a prerequisite for ensuring an
improvement in the concrete living conditions of people with experience of mental
health challenges (Chamberlin & Rogers, 1990). In addition, supportive interac-
tions between people with experience of mental health challenges and those with-
out these experiences can help combat the myths about mental illness and make
the community more welcoming and inclusive (Corrigan & Kleinlein, 2005; Kloos,
2010).
Models of supported employment (Bond et  al., 2001), supported housing
(Carling, 1995), and supported education (Unger, Pardee,  & Shafer, 2000)  have
shown that, with appropriate assistance, individuals with mental health challenges
can work in the competitive market, live independently, and succeed in their school
projects. These programs are based on advocating for social inclusion as a critical
priority for people with experience of mental health challenges, and they empha-
size that community integration will be achieved primarily through the effective
participation of people in community settings and through the establishment and
strengthening of links with others in the community.
Multilevel ecological approaches. Fundamental to community psychology is
a consideration of phenomena at multiple levels of analysis (Dalton, Elias,  &
Wandersman, 2007; Nelson & Prilleltensky, 2010). A focus on individuals alone
obscures barriers to participation in community life. In CMH, a focus on simply
changing individuals overlooks the social conditions and limited opportunities
that many persons with psychiatric disabilities face when partaking in community
settings. In this book, we consider the potential influences of microsettings (e.g.,
family, peer group), organizational settings (e.g., mental health center, job site),
community settings (e.g., neighborhood), and macrosettings (e.g., society’s views
of mental illness, national policy). An ecological orientation examines how different
aspects of communities are interdependent, how they adapt to changes, how they
distribute resources, and how they change over time (Kelly, 1966). This approach
to understanding human experience emphasizes the roles that each member of a
setting can play; each member is a potential resource for addressing the concern at
34 Per spectives on Transformative Change

hand. In CMH, consumers/survivors are often overlooked resources for addressing

issues. However, community members outside of the mental health system are even
less likely to be viewed as potential resources for addressing mental health concerns
(Trainor, Pomeroy, & Pape, 1999).
Consumer/survivor initiatives have also focused on the development of
resources across ecological levels of analysis. For example, the Recovery Model
Recovery Advisory Group (Ralph  & Corrigan, 2005)  seeks to develop personal
and social dimensions of recovery. Originally developed from the experience of sev-
eral leading consumers/survivors, the recovery process is conceptualized as having
cognitive, emotional, spiritual, and physical changes embedded in the influence of
social contexts. Family, friends, peers, community, and support services can facili-
tate and nurture recovery or, conversely, hinder and block the process. Barriers to
recovery include the lack of opportunities for choice, compulsory treatment, lack of
housing, poverty, and lack of understanding and natural supports. These negative
influences can lead to discrimination, stigma, and social isolation. We suggest that
an ecological awareness of mental health programs and resources can help promote
empowerment, well-being, and recovery of people with mental health challenges.
Recovery is the product of dynamic interaction between individual characteristics
(e.g., hope, objectives), the characteristics of contexts (e.g., material, significant
activities, social relationships), and the characteristics of exchanges between indi-
viduals and contexts (e.g., hope, empowerment, independence).

Resources for Changing How We Do Our Work

Empowerment:  Individual and collective. Rappaport (1981) observed that those
with the least control in their lives were those who most needed it. Unfortunately,
many consumers/survivors have described how professionals and mental health
systems have taught them to see themselves as incapable of making decisions, as
persons who need to be taken care by others, thus removing their own responsibil-
ity for their problems and solutions (Ahern & Fisher, 2002; Deegan, 1997). From
a community psychology perspective, empowerment includes the ability to make
decisions that control your life, access to resources, and the ability to take action to
realize your goals. Empowerment is not a purely internal state, such as simply feel-
ing powerful, inspired, or confident. For many consumers, empowerment involves
regaining the opportunity to direct their lives (Chamberlin, 1997; Deegan 1997).
These opportunities may include key decisions about where to live, how to pass
the time, where to work, with whom to relate, and the type of support and services
they need and find most suitable. Regaining control over one’s life helps to reduce
feelings of helplessness and a sense of victimization while increasing feelings of per-
sonal self-efficacy (Fisher, 1994; Lovejoy, 1982; Walsh, 1996).
In our approach to transformative change in CMH, we need to consider
how mental health services, settings, and systems may promote empowerment
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 35

(Zimmerman, 2000). For example, do consumers/survivors have opportunities for

self-determination within the service? Can they have input or influence on the func-
tioning of the service itself? As part of their recovery journeys, people begin to set
goals and priorities, make decisions and make choices, take risks to try new things,
and shoulder the responsibility to conduct their life. Mental health services and sys-
tems can play important roles in encouraging or limiting empowerment by seek-
ing input and evaluation of services from consumers/survivors, encouraging the
pursuit individual goals and supporting persons when they fall short of these goals,
and by encouraging social support among consumers/survivors. When decisions
are undertaken with other consumer/survivors, their collective empowerment can
begin to address problems in mental health systems.
We must recognize that empowerment also includes social and political dimen-
sions. The label of “mental patient” is too often accompanied by discrimination
and the loss of rights. People can lose their property, the custody of their children,
and their privacy and see their opportunities for social participation significantly
reduced (Ahern  & Fisher, 1999). Too often, there have been legislative barriers
erected against the social participation of people diagnosed with psychiatric dis-
abilities (e.g., termination of parental rights; voting; Rowe, 1999). Empowerment
can be necessary to address situations in which persons with psychiatric disabilities
are treated as second-class citizens. Reassuming the role of citizen requires identi-
fying discrimination, advocating for policies that promote equal treatment under
the law, and insisting on equal opportunities in access and participation in commu-
nity life. Involvement in advocacy and political action could be important factors in
the empowerment and recovery processes for consumers/survivors ( Jacobson &
Curtis, 2000).
Power: Oppression—levels of analysis and intervention. A consideration of empow-
ering processes and opportunities requires the examination of power relationships.
For transformative change, we need to examine power across levels of analysis and
identify potentially oppressive conditions that limit a person’s capacity to exert
actual influence on decisions (Rappaport, 1981; Serrano-Garcia, 1994). In CMH,
we need to examine treatment planning decisions and referrals for work, housing,
or education (Chamberlin, 1997). On a more abstract level, we need to examine
program requirements, expectations, and rewards.
Gaventa (1980) proposed an interesting framework for thinking about power
in social relationships. Within this framework, the first instrument of power is
controlling resources that can be used to bargain, reward, and punish. This resembles
descriptions of power that staff have over clients or that administrators have over
staff in mental health systems (Chamberlin, 1978; Deegan, 1988). A second instru-
ment of social power is controlling channels for participation in community deci-
sions. Community mental health has started a dialogue about the extent to which
mental health services consumers have input into their own treatment decisions.
However, examination of consumer power and participation in deciding the focus
36 Per spectives on Transformative Change

of programming and decisions about how to allocate resources in mental health sys-
tems are still rare (Kloos, 2010). A third instrument of power is shaping the defini-
tion of a public issue or conflict. This is the power of “spin,” of shaping the terms of
public debate (Gaventa, 1980). In CMH, this may include how persons with mental
health problems are portrayed in media, how the needs of persons with psychiatric
disabilities are explained when advocating for resources, and how individuals’ situ-
ations are presented in case conferences. This use of power can make one perspec-
tive seem natural, normal, important, or rational, while making another perspective
seem strange, frightening, irrelevant, or unreasonable.
Social critics have observed that the more powerful group is typically dominant
in how its views shape issues and control how resources are distributed. The con-
cerns of the less powerful group is subordinated or ignored. Within CMH, mental
health systems have controlled access to most domains of life for persons with psy-
chiatric disabilities: healthcare, housing, employment, education, and sometimes
even relationships with families or significant others. Hierarchies of services often
exclude those with disabilities from making meaningful input in decisions about
their lives by using justifications about the perceived lack of capacity of a “class” of
persons (Kloos, 2010; Rappaport, 2000; White, 2010). Such exclusion is an act of
oppression that limits the ability of individuals to make important decisions about
their lives. Even more insidious are ideologies and myths that convince members of
subordinated groups that they actually are inferior (Chamberlin, 1997; McDonald,
Keys,  & Balcazar, 2007). This sense of inferiority has been termed internalized
oppression. A transformative approach to mental health must address hierarchies of
oppression as well as internalized oppression.
Liberation: Individual and collective. The concept of liberation in social systems
calls attention to the workings of power, to identify and challenge oppressive con-
ditions and to emphasize and support the capacities for oppressed (Montero  &
Varas Díaz, 2007; Nelson & Prilleltensky, 2010). In most CMH systems, a libera-
tion perspective seeks goals that many service providers and consumers/survivors
endorse: better functioning, realization of recovery, and participation in commu-
nity life. A liberation perspective will be needed among consumers/survivors and
professionals to the extent that the system practices do not address conditions that
mental health consumers view as oppressive. A  liberation perspective likely calls
for methods that are different from those emphasized by status quo interventions
within the system.
Mental health consumers have taken important steps in raising critical aware-
ness and the understanding of oppressive circumstances in CMH. Joint leader-
ship by committed mental health professionals and consumers can guide efforts
to change practices and policies; from a new community psychology of mental
health, consumers are viewed as resources that have been underutilized for mak-
ing such changes (Kloos, 2010; Rappaport, 2000). Collective action among con-
sumers and allied professionals is needed to implement practices that can challenge
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 37

oppressive conditions. The liberation perspective is not an academic exercise; it is

a call to action. It identifies injustices and names an opponent: an oppressive sys-
tem. It also provides an orientation for something positive to work toward: values
of social justice, empowerment, collaboration, a focus on strengths, and the foster-
ing of individual and collective well-being (Nelson & Prilleltensky, 2010; Ornelas,
2008). A potential problem of a liberation approach arises from an overemphasis
on a social system that portrays members of subordinated groups merely as vic-
tims. From a transformative change perspective, liberation challenges oppressive
structures and recognizes the strengths and resistance to oppression of consumers/
survivors and allied professionals.
Collaboration. A guiding value of community psychology has been collaboration
among stakeholders as a means of realizing empowerment, focusing on strengths,
and advancing social justice (Kloos, et  al., 2012; Nelson,  & Prilleltensky, 2010).
In a study on the impact of professionals in recovery (Ralph, Lambric, & Steele,
1996), consumers identified that professionals have a more positive role in recovery
when they encourage and respect personal decisions, promote freedom of choice,
and recognize the talents and capabilities of consumers. Programs are more suc-
cessful when consumers and professionals work together to find the resources and
services that consumers consider most suitable to their recovery process. Of course,
the objectives of consumers/survivors are very diverse, as in any group. People are
different in terms of their age, gender, culture, experience, interests, and personal
needs. What is significant, valued, and prioritized in each moment, for each con-
sumer will certainly be different from the choices made by others. The challenge for
professionals is to be sensitive to this diversity and support people in accessing the
resources, roles, and activities that are significant for them.
Collaboration in CMH means that consumers have the opportunity to make
choices that may be different from those that professionals would make, and that
those decisions are respected. Sometimes, professionals may be afraid that their
clients do not make realistic choices or that those choices will not succeed. Most
people have made bad choices or failed at some point in their lives. Deegan (1988)
has called for mental health collaborations that allow for the “dignity of failure”
in making decisions. Personal growth can occur when mental health profession-
als, supportive friends, and family members support an individual’s recovery from
problematic decisions. Not being allowed the opportunity to make a mistake will
limit personal growth and recovery.
In CMH services, a culture of recovery also involves the promotion of organiza-
tional empowerment of consumers/survivors and families and the development of
collaborative relationships among different stakeholders. This means that consum-
ers/survivors and families are involved in service planning, management, and evalu-
ation ( Jacobson & Curtis, 2000; O’Connell, Tondora, Croog, Evans, & Davidson,
2005). Professionals may seek to promote more collaborative relationships
between consumers/survivors and their families. The development of collaborative
38 Per spectives on Transformative Change

and empowering relationships also implies procedures that enable stakeholders to

express their views and participate in informed decision making. Conflicts in these
efforts can be considered a source of inspiration within collaborative relationships
because they allow for the discussion of different views and experiences. When
properly addressed, conflicts can lead to better decisions and strengthen mutual
trust and a sense of empowerment (Dalton et al., 2007).
Progress is evaluated based on transformative change in systems and transformative
changes in the lives of individuals. This last community psychology principle focuses
on accountability for performance and change across levels of analysis. Although
the values and theories of community psychology guide this model, evidence of
change in systems and in people’s lives is the primary standard by which success will
be judged (Kloos, et al., 2012; Nelson & Prilleltensky, 2010; Ornelas, 2008). That
is, community psychology is guided by its values of where to look for change and
how to achieve it. Community psychology’s value on empiricism focuses these con-
cerns on achieving outcomes for individuals and systems. Transformative change in
CMH will require the measurement of organizational and system functioning, as
well as of individual outcomes. The community psychology perspectives discussed
earlier suggest that the goals of transformative change efforts in mental health ser-
vices and systems be developed collaboratively with consumers/survivors, mental
health professionals, and other stakeholders. Similarly, involving consumers and
mental health service providers in the evaluation of services and settings can add
additional accountability. As an empirical field, transformative change in CMH
needs to examine changes in services, systems, and people’s lives.

Review of Historical Cases of Challenges to Transformative Change

in Community Mental Health
Transformative change for individuals and for systems is challenging and usually
is not a linear process. In the midst of change efforts, it can be hard to anticipate or
prepare for challenges. However, we can be sure that efforts to change systems will
be challenged. We close this chapter by considering four case examples of efforts to
promote transformative change in mental health. These examples come from four
different countries and span different eras. Although each example faced different
challenges, had different resources, and used different strategies, collectively, they
represent many of the challenges one may encounter when working to promote new
ways of addressing mental health needs.

Fairweather Lodge: Consumer Control, Program Innovation, and Dissemination

Working in a psychiatric hospital, George Fairweather and colleagues at the Palo
Alto, California, VA hospital were charged with the development of programs to
help persons being discharged from long-term institutional care. They began by
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 39

looking for ways to expand group therapy for their male patients. Their expanded
efforts included men and women as Lodge members and eventually led to the cre-
ation of a new approach for people with serious psychological disorders moving
from large institutions and presaged a search for alternatives that might promote
participation in community life.
George Fairweather and associates created an alternative setting in which men
released from a psychiatric hospital moved together to a residence in the community
(Fairweather, 1979). For the first lodge, an old motel was leased and refurbished.
After visiting the new Lodge several times, the former patients were discharged
from the hospital and moved in. Staff persons from the hospital were available and
created new roles to support residents. They developed programming in collabora-
tion with Lodge residents. With several trial-and-error experiences, Lodge mem-
bers became self-governing. They developed Lodge rules that, for instance, made
it acceptable to discuss symptoms of mental health problems with other Lodge
members but not with neighbors. The researchers were surprised that some of the
previously most “seriously ill” persons became active members of the community.
With consultation, Lodge members established a janitorial and gardening business
and eventually became economically self-supporting. Finally, Lodge members felt
confident enough that they ended their professional relationship with the mental
health service providers (Fairweather, 1994). This was a transformative moment
for the Lodge residents and for the staff and researchers. As Kloos, Hill, Thomas,
Wandersman, Elias, and Dalton (2012) described,

An important point in any community partnership comes when citizens

assert control. Fairweather later described the poignant moment when the
first lodge members thanked him for his efforts but also stated “it’s time for
you to go.” Fairweather termed this a “horrible moment for a professional,”
yet he understood and accepted their decision. The lodge had become its own
community, and the presence of a professional, however well-intentioned
and supportive, would hinder its future development. (p. 46)

Community Lodges now serve men and women in several states and still seek
to change role relationships that are usually found in mental health care. With
this model, Lodge residents govern themselves. Professionals serve as consultants
and have a collaborative role that seeks to maximize members’ autonomy (Haertl,
2007). Lodges decide for themselves, as a group, whether to admit new members or
to dismiss members (Fairweather, 1979; 1994). Ideally, the professional role is not
needed. Lodge members assume responsibility for monitoring each other, taking
medication, behaving responsibly within and outside the Lodge, and related issues.
The Lodge model illustrates community psychology principles of identifying and
promoting the unrecognized strengths of residents, a collaborative approach to
their work, and the promotion of mutual support among its participants.
40 Per spectives on Transformative Change

However, the Fairweather Lodge initiatives have not led to transformative

change in mental health systems. The primary challenges faced by Fairweather and
colleagues were their efforts to disseminate convincing research results to inform
policy and practice in systems (Fairweather, 1979; 1994). Although Fairweather
and colleagues conducted careful research projects with comparison groups, exper-
imental assignment, and thorough documentation, the empirical demonstration of
the better outcomes for former psychiatric hospital patients and for systems was
not sufficient in transforming systems of care. Most Lodges operate as alternatives
to existing mental health systems. The success of the Community Lodge contra-
dicted many professionals’ assumptions about the capabilities of persons with men-
tal disorders. Any system has stakeholders that benefit from the current balance of
resources, power, and politics. Fairweather’s experiments challenged resources for
current practices and the power of persons running most mental health systems. He
discovered that transformative change required more than highly regarded research
and impressive findings. We conclude from this case example that strategies for
organizational and system change will be necessary to advance the innovations
described in this book.

Mental Health System Reform in Italy

Italy was a pioneer in the process of closing psychiatric hospitals. Although other
countries made efforts to close selected hospitals, Italy undertook a national cam-
paign to reform its system of mental health care. To an extent greater than any other
nation, Italy had a national dialogue about the necessity of moving away from institu-
tions for addressing mental health concerns to developing community alternatives.
Three important contributions of the Italian experience can be seen as catalysts
for these developments: publication of a book, creation of a new law, and open pub-
lic debate about models of mental health care. First, Franco Basaglia published a
book titled L’istituzione negate: Rapporto da un ospedale psichiatrico (The institution
denied: Report from a psychiatric hospital) in 1968. This book brought the experi-
ence of the closure of a psychiatric hospital to public attention; it helped to facili-
tate interest and discussion about mental health policies and laws. Second, the
Italian Parliament debated and approved Law 180 in 1978, which (a) focused on
the reform of psychiatric assistance and (b) determined that psychiatric hospitals
would be closed throughout the nation (Mosher  & Burti, 1989). This legislative
initiative was also known as Basaglia’s Law. It has been recognized for its innova-
tion and has spurred years of open debate in both the psychiatric profession and in
public opinion. Third, the theme of destigmatization of the mentally ill has been a
widely discussed social issue for the past 40 years. Known in Italy as the “psychiatric
question,” this national dialogue includes movements for noninstitutional care and
prevention. The movements were successful in closing many hospitals and develop-
ing alternative systems of care in local communities.
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 41

Thirty years after these reforms, however, we observe that the movement toward
community approaches to mental health in Italy also did not achieve goals that
can be considered transformative for persons with psychiatric disabilities. Reform
efforts were diverted into processes similar to transinstitutionalization, in which the
same approaches to care and treatment that were used in the large institutions were
implemented in community settings. These developments included the creation of
group homes focused on treatment (Piccione, 2004) and large shelters/coopera-
tives for vocational purposes (Carozza, 2005), both of which continue to segregate
persons with psychiatric disabilities from the general population. Little has been
done to promote participation in community life. Persons who use these services
follow the directives of professionals and have little choice in their own care and few
opportunities to contribute to the well-being of others. In some situations, such as
one of the icons of deinstitutionalization, the Santa Maria della Pieta Hospital in
Rome, old psychiatric wards have been converted into sheltered/cooperative work-
shops and some into homes for seniors with mental illness.
The nontransformative results of these mental health reforms arose for two
reasons. The first is that the entire transition of mental health care paradigms was
led by mental health professionals. Persons with lived experience of mental health
problems did not have a voice in the process. Second, and relatedly, there was no
leadership or national network of users/consumers of psychiatric services. In this
case, political power was mobilized to engage in broad-scale mental health reform,
unlike in the Fairweather Lodge initiatives in the United States. However, the pri-
mary mental health reformers in Italy did not use community psychology princi-
ples when undertaking their reforms. In spite of this history, there is evidence of
recent research and practice of opportunities for transformative change in Italy (e.g.,
Maone, 2011; Svettini, Boggian, Lamonaca,  & Conca, 2010). There has been an
increasing critique of the neoinstitutionalization movement and advocacy for the
need of recovery-oriented services in Italy.

Creating Supportive Housing and Consumer/Survivor Initiatives in Ontario, Canada

A movement by psychiatric consumers/survivors began to emerge in Ontario in
the 1970s and 1980s during the early days of deinstitutionalization. Inspired by
Vancouver Mental Patients Association (MPA), a survivor organization called On
Our Own, named after Judi Chamberlin’s (1978) book about the MPA, was created
in Toronto in the late 1970s (Nelson et al., 2001). As the provincial government
embarked on a reduction in psychiatric hospital beds and the closure of some insti-
tutions, the consumer/survivor movement and key survivor activists influenced
the direction and focus of emerging CMH services, particularly patients’ rights,
housing, and self-help. Community psychologists in Ontario allied themselves with
consumers/survivors and progressive CMH professionals to make transformative
changes in these areas.
42 Per spectives on Transformative Change

In the late 1970s, community psychologist Ed Bennett served as president of the

Canadian Mental Health Association (CMHA)/Ontario Division, which worked
with the government to develop legislation to protect patients’ rights. Bennett and
colleagues also created the Canadian Journal of Community Mental Health, which
began in 1982. This journal, which has had several community psychologists as
senior editors (Geoff Nelson, Ed Pomeroy, Francine Lavoie, Tim Aubry, John
Sylvestre), brought a community psychology perspective to the field of CMH in
Canada. At the same time, the National Office of the CMHA, under the leader-
ship of John Trainor, developed a Framework for Support that emphasized the role
of self-help, family, community, and valued resources such as housing and employ-
ment in a reformed mental health system (Trainor & Church, 1984; Trainor et al.,
1999). Survivor activist David Reville and community psychologist Ed Pomeroy
were major contributors to the Framework document and communication of its
central ideas. The Framework, which was adopted by the government of Ontario
(Ontario Ministry of Health, 1993), also placed an unprecedented emphasis on
consumer/survivor and family participation in the mental health system. The
Putting People First (Ontario Ministry of Health, 1993) document called for 30%
consumer/survivor participation and 20% family participation on all district and
regional planning bodies for mental health in the province.
Survivor activism has also had an impact on public policy related to housing for
deinstitutionalized patients. The Toronto media drew attention to the scandalous
living conditions of deinstitutionalized patients moved from the former Queen
Street Mental Health Centre in Toronto into boarding homes in the Parkdale neigh-
borhood, which was adjacent to this hospital. Survivor Pat Capponi (1992) wrote
a book about her experiences in one such boarding home and took then Ontario
Health Minister Larry Grossman on a tour of the boarding homes in Parkdale.
Following this, Grossman and the provincial government provided funding that
enabled the development of the Toronto Supportive Housing Coalition, which was
led by John Trainor and other Toronto stakeholders (Trainor, Lurie, Ballantyne, &
Long, 1987). This coalition dramatically increased the amount of supportive hous-
ing for mental health consumers/survivors in Toronto and inspired other commu-
nities to take action on supportive housing (Nelson, 1994). The Ontario Ministry
of Health and Ontario Ministry worked collaboratively to accelerate the growth of
supportive housing during this time. With growth of supportive housing in Ontario,
several community psychologists (Tim Aubry, Geoff Nelson, John Sylvestre,
Richard Walsh) have played an important role in research, evaluation, and consulta-
tion regarding these programs.
Another transformative change that occurred during this period was the creation
of the Consumer/Survivor Development Initiative (CSDI). The story of the CSDI
is told in detail in Trainor and Reville’s chapter later in this book (Chapter 15, this
volume). To summarize briefly, the New Democratic Party (NDP) won the 1990
provincial election. Survivor activist David Reville, who had been an NDP Member
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 43

of Provincial Parliament, became Premier Bob Rae’s special advisor. The CSDI was
one of the special projects that Reville initiated, and John Trainor was seconded to
work with the Ontario Ministry of Health to launch this initiative, which led to a
provincial network of consumer/survivor initiatives (CSIs). Later, when research
funding became available, Trainor teamed up with community psychologist Geoff
Nelson and colleagues to conduct an evaluation of several CSIs using a participa-
tory action research approach.
This Ontario story of change illustrates how community psychologists can work
in partnership with other progressive professionals and consumers/survivors.
Community psychology principles of collaboration, empowerment, and social jus-
tice were clearly evident in this work.

Developing a Community Mental Health Movement in Portugal

Since the early 1990s, community psychology has been influential for the reform
of the mental health system in Portugal regarding service provision, national regu-
lations, and academic training (Ornelas et al., 2010). These influences have been
inspired by the ecological and contextualist approach of community psychology
(Kelly, 2006; Levine & Perkins, 1987). These efforts have focused on the integra-
tion of consumers/survivors in natural community contexts, such as in schools and
enterprises, and the use of both natural and professional resources and networks as
means to support individuals making personal choices about their participation.
In terms of national regulations, the values and principles section of the National
Plan for Mental Health specifies that care should be provided in the least restric-
tive contexts; that people have a right to housing and employment supports; that
people with mental illness should participate in the planning and development of
services; and that a recovery approach in which services create the conditions for
self-determination and choices are emphasized (Plano Nacional de Saudé Mental
2007–2016: Executive Summary, 2008, p. 13).
Concerning academic training, the first postgraduation curriculum in CMH was
created in 1993. Similarly, an undergraduate program in community development
and mental health was created in 1998. As a reflection of the success in introducing
community psychology to mental health reforms, a master’s degree in community
psychology was initiated in 2008 that contributed to training professionals in com-
munity science and social change.
The recognition of the importance of consumer/survivor movements
(Chamberlin, 1978; 1990)  has also been important in shaping change in the
Portuguese mental health system, particularly the contributions of recovery and
empowerment approaches (Ahern & Fisher, 1999; Chamberlin, 1997; Davidson,
2003). These approaches have been a source of inspiration for service organizations
that include the vision of users and their active participation, as well as a collabora-
tive and power-sharing relationship between users and professionals. A more recent
44 Per spectives on Transformative Change

but crucial contribution has been the implementation of the Housing First model
to promote independent housing, consumer choice, and community integration
(Tsemberis & Eisenberg, 2000).
The principles and practices of community psychology have been fundamental
for the consolidation of the transformative CMH paradigm in Portugal, particularly
in the movement toward deinstitutionalization and the consistency of the ecology
of community integration. The concrete focus on integration in regular housing,
education, and employment, as well as the need for broader social interactions
based on personal interest and choice, were also crucial components for under-
standing the need for change both in structures and intervention strategies. The
guidance of empowerment theory has also led to a deeper understanding of the
consumer movement and recognition of the recovery philosophy as a major issue
for consumer affirmation and its role in the development of social policies in the
field of mental health.

Conclusion
Reflecting on history is a dynamic task and a part of reflexive practice. Policies
and practices evolve; goals change over time. What may be considered transfor-
mative now may not be in the future. Although much of this discussion about
the history of community psychology and transformative change has focused
on examples from North America and Western Europe, there is great inter-
est and potential in many countries. At five meetings that included researchers,
professionals, and consumers/survivors, nearly 100 people contributed to early
discussions of this model. These meetings took place in Montclair, New Jersey
(Society for Community Research and Action 2009); Paris (European Congress
on Community Psychology 2009); Puebla, Mexico (International Conference
on Community Psychology 2010); Chicago (SCRA 2011), and Barcelona
(ICCP 2012). Consumers/survivors and advocates from Portugal, Canada,
and the United States have talked about the need for this model and their posi-
tive experiences with researchers who shared a common vision. Persons from
Australia, France, Germany, Italy, Japan, Latvia, Mexico, Norway, South Africa,
Spain, Sweden, and the United Kingdom were also engaged in these discussions.
Although CMH systems in these countries have different resources, guiding para-
digms, and policies, there was consensus regarding the need to establish networks
that could be resources for pursuing alternative paradigms for the promotion of
mental health in community settings.
Contemporary developments and historical trends suggest great promise in
advancing transformative change now. Community mental health and community
psychology have been associated with each other for many years in many differ-
ent national contexts. Consumer/survivor and recovery movements are becoming
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 45

more influential in many countries. Psychiatric rehabilitation has moved away from
narrow conceptualizations of skills and is doing more work in community settings,
thus raising new issues that require different models and theories of support. Budget
crises have forced difficult choices and augmented dissatisfaction with current mod-
els of CMH; in some areas, these financial crises have been met by a retrenchment
of medical models and the cutting rehabilitation funding. These developments are
raising the awareness for new models to address mental health needs. We suggest
that most of these challenges can be viewed as opportunities for advancing trans-
formative change. Community psychology’s conceptual frameworks, models for
intervention, and historical examples are resources that can help guide and evaluate
progress toward transformative change.

References
Ahern, L., & Fisher, D. (1999). People fully recover from mental illness. NEC Newsletter, Spring.
Ahern, L., & Fisher, D. (2002). Personal assistance in community existence: Recovery at your own pace.
Lawrence, MA: National Empowerment Center.
Albee, G. W. (1959). Mental health manpower trends. New York: Basic Books.
Albee, G.  W. (1995). [Untitled videotape interview]. In J. G.  Kelly (Ed.), The history of commu-
nity psychology: A video presentation of context and exemplars. Chicago: Society for Community
Research and Action.
Allott, P., & Loganathan, L. (2002). A new paradigm for delivering recovery oriented services for
people with serious mental illness: Implications for service delivery. The Mental Health Review,
7(2), 6–13.
Aubry, T., & Myner, J. (1996). Community integration and quality of life: A comparison of persons
with psychiatric disabilities in housing programs and community residents who are neigh-
bours. Canadian Journal of Community Mental Health, 15(1), 5–20.
Barham, P., & Hayward, R. (1998). In sickness and in health: Dilemmas of the person with severe
mental illness. Psychiatry, 61, 163–170.
Basaglia, F. (1968). L’istituzione negata. Rapporto da un ospedale psichiatrico. Torino: Einaudio.
Bennett, C., Anderson, L., Cooper, S., Hassol, L., Klein, D., & Rosenblum, G. (1966). Community
psychology: A report of the Boston Conference on the Education of Psychologists for Community
Mental Health. Boston: Boston University.
Bond, G., Becker, D., Drake, R., Rapp, C., Meisler, N. Lehman, A., Bell, M., & Blyler, C. (2001).
Implementing supported employment as an evidence-based practice. Psychiatric Services,
52(3), 313–322.
Borkman, T. (1976). Experiential knowledge: A new concept for the analysis of self-help groups.
The Social Service Review, 50, 445–456.
Borkman, T. (1999). Understanding self-help/ mutual aid:  Experiential learning in the commons.
Piscataway, NJ: Rutgers University Press.
Brown, L. D. Shepherd, M. D., Wituk, S. A., & Meissen, G. (2008). Special issue on mental health
self-help. American Journal of Community Psychology, 42 (1-2), 105–202.
Capponi, P. (1992). Upstairs in the crazy house: The life of a psychiatric survivor. Toronto: Viking.
Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric disabili-
ties. New York: The Guilford Press.
Carozza, P. (2005). O emprego como uma oportunidade para o recovery. In Ornelas, et al. (Coord.),
Participação e empowerment das pessoas com doença mental e seus familiares (pp. 265–282).
Lisboa: AEIPS Edições.
46 Per spectives on Transformative Change

Chamberlin, J. (1978). On our own:  Patient-controlled alternatives to the mental health system.
New York: McGraw-Hill.
Chamberlin, J. (1990). The ex-psychiatric patients’ movement: Where we’ve been and where we’re
going. The Journal of Mind and Behavior, 11, 323–336.
Chamberlin, J. (1997). A working definition of empowerment. Psychiatric Rehabilitation Journal,
20(4), 43–46.
Chamberlin, J., & Fisher, D. (2008). Inclusive livable communities for people with psychiatric disabili-
ties. Washington, DC: National Council on Disability.
Chamberlin, J., & Rogers, J. (1990). Planning a community-based mental health system: Perspective
of service recipients. American Psychologist, 45, 1241–1244.
Chinsky, J.  M.,  & Rappaport, J. (1970). Attitude change among college students and chronic
patients: A dual perspective. Journal of Consulting and Clinical Psychology, 35, 388–394.
Cicchetti, D., Rappaport, J., Sandler, I., & Weissberg, R. P. (2000). The promotion of wellness in chil-
dren and adolescents. Washington, DC: Child Welfare League of America.
Copeland, M. E. (2002). Wellness recovery action plan. West Dummerston, VT: Peach Press.
Corrigan, P.,  & Kleinlein, P. (2005). The impact of mental illness stigma. In P. Corrigan (Ed.),
On the stigma of mental illness:  Practical strategies for research and social change (pp. 11–44).
Washington, DC: American Psychological Association.
Cowen, E.  L. (1973). Social and community interventions. Annual Review of Psychology, 24,
423–472.
Cowen, E. L. (1994/2002). The enhancement of psychological wellness: Challenges and opportu-
nities. American Journal of Community Psychology, 22, 149–180. Reprinted in T. Revenson, A.
D’Augelli, S. E. French, D. Hughes, D. Livert, E. Seidman, M. Shinn, & H. Yoshikawa (Eds.), A
quarter century of community psychology (pp. 445–475). New York: Kluwer Academic/Plenum.
Dalton, J. H., Elias, M. J., & Wandersman, A. (2007). Community psychology: Linking individuals and
communities (2nd ed.). Belmont, CA: Thomson Wadsworth.
Davidson, L. (2003). Living outside mental illness:  Qualitative studies of recovery in schizophrenia.
New York: New York University Press.
Davidson, L., Sells, D., Sangster, S.,  & O’Connell, M. (2005). Qualitative studies of recov-
ery: What can we learn from the person. In R. Ralph & P. Corrigan (Eds.), Recovery in mental
Illness—Broadening our understanding of wellness (pp. 147–170). Washington, DC: American
Psychological Association.
Deegan, P. (1988). Recovery:  The lived experience of rehabilitation. Psychosocial Rehabilitation
Journal, 11(4), 11–19.
Deegan, P. (1993). Recovering our sense of value after being labelled. Journal of Psychosocial Nursing
and Mental Services, 31(4), 7–11.
Deegan, P. (1997). The helping culture. In L. Spaniol, C. Gagne, & M. Keohler (Eds.), Psychological
and social aspects of psychiatric disability (pp. 348–357). Boston:  Center for Psychiatric
Rehabilitation.
Dohrenwend, B.  S. (1978/2002). Social stress and community psychology. Reprinted in T.
Revenson, A. D’Augelli, S. E.  French, D. Hughes, D. Livert, E. Seidman, M. Shinn,  & H.
Yoshikawa (Eds.), A quarter century of community psychology (pp. 103–117). New York: Kluwer
Academic/Plenum.
Durlak, J. (1979). Comparative effectiveness of paraprofessional and professional helpers.
Psychological Bulletin, 86, 80–92.
Estroff, S. (1989). Self, identity, and subjective experiences of schizophrenia: In search of the sub-
ject. Schizophrenia Bulletin, 15, 189–196.
Fairweather, G. W. (1979). Experimental development and dissemination of an alternative to psy-
chiatric hospitalization. In R. Munoz, L. Snowden, & J. G. Kelly (Eds.), Social and psychological
research in community settings (pp. 305–342). San Francisco: Jossey-Bass.
Fairweather, G. W. (1994). [Untitled videotape interview]. In J. G. Kelly (Ed.), The history of commu-
nity psychology: A video presentation of context and exemplars. Chicago: Society for Community
Research and Action.
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 47

Fairweather, G. W., Sanders, D., Cressler, D., & Maynard, H. (1969). Community life for the mentally
ill: An alternative to institutional care. Chicago: Aldine.
Fisher, D. (1994). Health care reform based on an empowerment model of recovery by people with
psychiatric disabilities. Hospital and Community Psychiatry, 45(9), 913–915.
Fisher, D. (1998). Recovery:  The behavioural healthcare guideline of tomorrow. Behavioral
Healthcare Tomorrow, 32(7), 36–38.
Fondacaro, M.,  & Weinberg, D. (2002). Concepts of social justice in community psychol-
ogy: Toward a social ecological epistemology. American Journal of Community Psychology, 30,
473–492.
Freeman, H., Fryers, T.,  & Henderson, J. (1985). Mental health services in Europe 10  years on.
Copenhagen: WHO.
Gaventa, J. (1980). Power and powerlessness:  Quiescence and rebellion in an Appalachian valley.
Urbana, IL: University of Illinois Press.
Goldston, S. (1994). [Untitled videotape interview]. In J. G. Kelly (Ed.), The history of community
psychology:  A  video presentation of context and exemplars. Chicago:  Society for Community
Research and Action.
Haertl, K. (2007). The Fairweather mental health housing model—a peer supportive environ-
ment: Implications for psychiatric rehabilitation. American Journal of Psychiatric Rehabilitation,
10(3), 149–162.
Heller, K., & Monahan, J. (1977). Psychology and community change. Homewood, IL: Dorsey.
Hobbs, N. (1964). Mental health’s third revolution. American Journal of Orthopsychiatry, 34,
822–833.
Jacobson, N., & Curtis, L. (2000). Recovery as policy in mental health services: Strategies emerging
from the States. Psychiatric Rehabilitation Journal, 23(4), 333–341.
Jahoda, M. (1958). Current concepts of positive mental health. Monograph Series No. 1, Joint
Commission on Mental Illness and Health. New York: Basic Books.
Jason, L. A., Groh, D., Durocher, M., Alvarez, J., Aase, D., & Ferrari, J. (2008). Counteracting “not in
my backyard”: The positive effects of greater occupancy within mutual-help recovery homes.
Journal of Community Psychology, 36(7), 947–958.
Joint Commission on Mental Health and Mental Illness. (1961). Action for mental health:  Final
report. New York: Basic Books.
Kelly, J.  G. (1966). Ecological constraints on mental health services. American Psychologist, 21,
535–539.
Kelly, J. G. (Producer, Director). (2003). Exemplars of community psychology [DVD set]. Society for
Community Research and Action. Available from SCRA Membership Office, 4440 PGA Blvd.
No. 600, Palm Beach Gardens, FL 33410 (561-623-5323). E-mail: Office@scra27.org.
Kelly, J. G. (2006). Becoming ecological: An expedition into community psychology. New York: Oxford
University Press.
Kennedy, M. (1989). Psychiatric rehospitalization of GROWers. Paper presented at the Biennial
Conference of the Society for Community Research and Action, East Lansing, MI.
Kloos, B. (2010). Creating new possibilities for promoting liberation, well-being, and recov-
ery:  Learning from experiences of psychiatric consumers/survivors. In G. Nelson  & I.
Prilleltensky (Eds.), Community psychology: In pursuit of well-being and liberation (2nd ed., pp.
453–476). London: MacMillan.
Kloos, B., Hill, J., Thomas, E., Wandersman, A., Elias, M., & Dalton, J. (2012). Community psychol-
ogy: Linking individuals and communities. Belmont, CA: Wadsworth-Cengage.
Kloos, B., & Shah, S. (2009). A social ecological approach to investigating relationships between
housing and adaptive functioning for persons with serious mental illness. American Journal of
Community Psychology, 44, 316–326.
Levine, M. (1981). The history and politics of community mental health. New York: Oxford University
Press.
Levine, M., & Perkins, D. V. (1987). Principles of community psychology: Perspectives and applications.
New York: Oxford University Press.
48 Per spectives on Transformative Change

Lovejoy, M. (1982). Expectations and the recovery process. Schizophrenia Bulletin, 9(4), 604–609.
Lounsbury, J. W., Leader, D. S., Meares, E. P., & Cook, M. P. (1980). An analytic review of research
in community psychology. American Journal of Community Psychology, 8, 415–441.
Maone, A. (2011). L’abitazione indipendente come fattore-chiave dei processi di recovery. In P.
Nigro, G. Saccotelli, T. De Donatis, & Semisa D. (Eds.), Psichiatria Il Lavoro Di Sisifo. Il Progetto
Riabilitativo Tra Etica, Evidenze ed Esperienze. Roma, Italia: Giovanni Fioriti.
Martin, P.  P., Lounsbury, D.  W,  & Davidson, W.  S. II (2004). AJCP as a vehicle for improving
community life:  An historic-analytic review of the journal’s contents. American Journal of
Community Psychology, 34, 163–173.
McDonald, K. E., Keys, C. B., & Balcazar, F. E. (2007). Disability, race/ethnicity and gender: Themes
cultural oppression, acts of individual resistance. American Journal of Community Psychology,
39, 145–161.
Meissen, G., Powell, T. J., Wituk, S. A., Girrens, K., & Arteaga, A. (1999). Attitudes of AA contact
persons toward group participation by persons with a mental illness. Psychiatric Services, 50,
1079–1081.
Mosher, L. R., & Burti, L. (1989). Community mental health: Principles and practice. NewYork: W.W.
Norton.
Montero, M.,  & Varas-Díaz, N. (2007). Latin American community psychology:  Development,
implications, and challenges within a social change agenda. In S. M.  Reich, M. Riemer, I.
Prilleltensky, & M. Montero (Eds.), International community psychology: History and theories
(pp. 63–98). New York: Springer.
Nelson, G. (1994). The development of a mental health coalition: A case study. American Journal of
Community Psychology, 22, 229–255.
Nelson, G., Lavoie, F., & Mitchell, T. (2007). The history and theories of community psychol-
ogy in Canada. In S. M.  Reich, M. Reimer, I. Prilleltensky,  & M. Montero (Eds.), The
history and theories of community psychology:  An international perspective (pp. 13–36).
New York: Springer.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
Nelson, G.,  & Prilleltensky, I. (Eds.). (2010). Community psychology:  In pursuit of liberation and
well-being (2nd ed.). New York: Palgrave Macmillan.
Nelson, G., Sylvestre, J., Aubry, T., George, L., & Trainor, J. (2007). Housing choice and control,
housing quality, and control over professional support as contributors to the subjective qual-
ity of life and community adaptation of people with severe mental illness. Administration and
Policy in Mental Health and Mental Health Services Research, 34, 89–100.
Newton, L., Rosen, A., Tennant, C., Hobbs, C., Lapsley, H.  M.,  & Tribe, K. (2000).
Deinstitutionalisation for long-term mental illness: An ethnographic study. The Australian and
New Zealand Journal of Psychiatry, 34, 484–490.
O’Connell, M., Tondora, J., Croog, G., Evans, A., & Davidson, L. (2005). From rhetoric to rou-
tine: Assessing perceptions of recovery-oriented practices in a state mental health and addic-
tion system. Psychiatric Rehabilitation Journal, 28, 378–386.
Onken, S. J., Craig, C. M., Ridgway, P., Ralph, R. O., & Cook, J. A. (2007). An analysis of the defini-
tions and elements of recovery:  A  review of literature. Psychiatric Rehabilitation Journal, 31,
9–22.
Ontario Ministry of Health. (1993). Putting people first: The reform of mental health services in Ontario.
Toronto: Author.
Ornelas, J. (2008). Psicologia comunitária. Lisboa: Fim de Século.
Ornelas, J., Vargas-Moniz, M.,  & Duarte, T. (2010). Community psychology and social
change:  A  story from the field of Mental Health in Portugal. Global Journal of Community
Psychology Practice, 1(1), 21–31. Retrieved March 30, 2013, from www.gjcpp.org/.
Piccione, R. (2004). Il futuro dei servizi di salute mentale in Italia: Significato e prospettive del sistema
italiano di promozione e protezione della salute mentale. Milano, Italy: Franco Angeli.
 Communit y Ps ychol og y Histor y and Theor y as R e s ourc e s 49

Plano Nacional de Saúde Mental 2007–2016: Executive Summary. (2008). Retrieved from www.
acs.min-saude.pt/2008/01/18/plano-accao-servicos-de-saude-mental; High Commissioner
for Mental Health www.acs.min-saude.pt
Prilleltensky, I., & Nelson, G. (2009). Community psychology: Advancing social justice. In D. Fox,
I. Prilleltensky, & S. Austin (Eds.), Critical psychology: An introduction (2nd ed., pp. 126–143).
London: Sage.
Ralph, R. O., & Corrigan, P. W. (Eds.). (2005). Recovery in mental illness: Broadening our understand-
ing of wellness. Washington, DC: American Psychological Association.
Ralph, R., Lambric, T., & Steele, R. (1996). Recovery issues in a consumer developed evaluation
of the mental health system. Proceedings: Fifth Annual National Conference on Mental Health
Services Research and Evaluation. Alexandria, VA: National Association of State Mental Health
Program Directors Research Institute.
Rappaport, J. (1977). Community psychology: Values, research, and action. New York: Holt, Rinehart
and Winston.
Rappaport, J. (1981). In praise of paradox:  A  social policy of empowerment over prevention.
American Journal of Community Psychology, 9, 1–25.
Rappaport, J. (1992). The death and resurrection of a community mental health movement. In M.
Kessler, S. E. Goldston, & J. M. Joffe (Eds.), The present and future of prevention: In honor of
George W.  Albee:  The Vermont Conference Series on the primary prevention of psychopathology
(Vol. 15, pp. 78–98). London: Sage.
Rappaport, J. (1993). Narrative studies, personal stories, and identity transformation in the mutual
help context. Journal of Applied Behavioral Science, 29, 239–256.
Rappaport, J. (2000). Community narratives: Tales of terror and joy. American Journal of Community
Psychology, 28, 1–24.
Rappaport, J., Davidson, W. S., Wilson, M. N., & Mitchell, A. (1975). Alternatives to blaming the vic-
tim or the environment: Our places to stand have not moved the earth. American Psychologist,
29, 525–528
Rappaport, J., Seidman, E., Toro, P.  A., McFadden, L.  S., Reischl, T.  M., Roberts, L.  J., Salem,
D. A., & Zimmerman, M. A. (1985). Collaborative research with mutual help organization.
Social Policy, 15, 12–24.
Reich, S. M., Riemer, M., Prilleltensky, I., & Montero, M. (Eds.). (2007). International community
psychology: History and theories. New York: Springer Science & Business Media.
Ridgway, P. (2001). ReStorying psychiatric disability: Learning from first person recovery narra-
tives. Psychiatric Rehabilitation Journal, 24(4), 335–343.
Roberts, L.  J., Luke, D., Rappaport, J., Seidman, E., Toro, P.,  & Reischl, T. (1991). Charting
uncharted terrain: A behavioral observation system for mutual help groups. American Journal
of Community Psychology, 19, 715–738.
Rowe, M. (1999). Crossing the border:  Encounters between homeless people and outreach workers.
Berkeley: University of California Press.
Ryan, W. (1971). Blaming the victim. New York: Random House.
Salem, D. A., Gant, L., & Campbell, R. (1988). The initiation of mutual-help groups within residen-
tial treatment. Community Mental Health Journal, 34, 419–429.
Salem, D. A., Reischl, T. M., Gallacher, F., & Randall, K. W. (2000). The role of referent and expert
power in mutual help. American Journal of Community Psychology, 28, 303–324.
Salzer, M. S. (1997). Consumer empowerment in mental health organizations: Concept, benefits,
and impediments. Administration and Policy in Mental Health, 24, 425–434.
Salzer, M. S., Rappaport, J., & Segre, L. (2001). Mental health professional’s support of self-help
groups. Journal of Community Applied Social Psychology, 11, 1–10.
Sarason, S. B. (1974). The psychological sense of community: Prospects for a community psychology. San
Francisco: Jossey-Bass.
Sarason, S.  B. (1981). An asocial psychology and a misdirected clinical psychology. American
Psychologist, 36(8), 827–836.
50 Per spectives on Transformative Change

Sarason, S.  B. (1988). The making of an American psychologist:  An autobiography. San

Francisco: Jossey-Bass.
Serrano-Garcia, I. (1994). The ethics of the powerful and the power of ethics. American Journal of
Community Psychology, 22, 1–20.
Speer, P., Dey, A., Griggs, P., Gibson, C., Lubin, B., & Hughey, J. (1992). In search of community: An
analysis of community psychology research from 1984-1988. American Journal of Community
Psychology, 20, 195–209.
Stefancic, A., & Tsemberis, S. (2007). Housing first for long-term shelter dwellers with psychiatric
disabilities in a suburban county: A four-year study of housing access and retention. Journal of
Primary Prevention, 28, 265–279.
Stein, C. H., Dworsky, D. O., Phillips, R. E., & Hunt, M. G. (2005). Measuring personal loss among
adults coping with serious mental illness. Community Mental Health Journal, 41, 129–139.
Stein, C. H., Ward, M., & Cislo, D. A. (1992). The power of a place: Opening the college classroom
to people with serious mental illness. American Journal of Community Psychology, 20, 523–547.
Stein, C. H., & Wemmerus, V. A. (2001). Searching for a normal life: Personal accounts of adults
with schizophrenia, their parents and well-siblings. American Journal of Community Psychology,
29, 725–746.
Svettini, A., Boggian, I. Lamonaca, D., & Conca, A. (2010). A quantitative and qualitative research
on recovery from severe mental illness: The Italian study on recovery (S.I.R.). Schizophrenia
Research, 117(2–3), 522.
Sylvestre, J., Nelson, G., Sabloff, A., & Peddle, S. (2007). Housing for people with serious mental
illness: A comparison of values and research. American Journal of Community Psychology, 40,
125–137.
Townley, G., & Kloos, B. (2011). Examining the psychological sense of community for individuals
with serious mental illness residing in community settings. Community Mental Health Journal,
47, 436–446.
Trainor, J., & Church, K. (1984). A framework for support for people with severe mental disabilities.
Toronto: Canadian Mental Health Association/National Office.
Trainor, J., Lurie, S., Ballantyne, R., & Long, D. (1987). The supportive housing coalition: A model
for advocacy and program development. Canadian Journal of Community Mental Health, 6(2),
93–106.
Trainor, J., Pomeroy, E., & Pape, B. (Eds.). (1999). Building a framework for support: A community
development approach to mental health policy. Toronto: Canadian Mental Health Association/
National Office.
Tsemberis, S., & Eisenberg, R. F. (2000). Pathways to housing: Supported housing for street-dwelling
homeless. Psychiatric Services, 51, 487–493.
Tsemberis, S., Moran, L., Shinn, M., Asmussen, S., & Shern, D. (2003). Consumer preference pro-
grams for individuals who are homeless and have psychiatric disabilities: A drop-in center and
a supported housing program. American Journal of Community Psychology, 32, 305–318.
Unger, K., Pardee, R., & Shafer, M. (2000). Outcomes of postsecondary supported education pro-
grams for people with psychiatric disabilities. Journal of Vocational Rehabilitation, 14, 195–199.
Walsh, D. (1996). A journey towards recovery:  From the inside out. Psychiatric Rehabilitation
Journal, 20, 85–90.
Whitaker, R. (2005). Anatomy of an epidemic: Psychiatric drugs and the astonishing rise of mental
illness in America. Ethical Human Psychology and Psychiatry, 7, 23–35.
White, G. (2010). Ableism. In G. Nelson & I. Prilleltensky (Eds.), Community psychology: In pursuit
of liberation and well-being (2nd ed., pp. 405–425). New York: Palgrave Macmillan.
Young, S., Ensing, D. (1999). Exploring recovery from the perspective of people with psychiatric
disabilities. Psychiatric Rehabilitation Journal, 22(3), 219–231.
Zimmerman, M. A. (2000). Empowerment theory: Psychological, organizational and community
levels of analysis. In J. Rappaport & E. Seidman (Eds.), Handbook of community psychology (pp.
43–63). New York: Kluwer/Plenum.
 3

Perspectives on Transformative Change

in Community Mental Health
john sylvestre

This chapter examines two broad and contrasting perspectives on transformative

change in community mental health (CMH). The two perspectives are largely
derived from distinct analogies from the natural sciences that have been applied
to the study of human organizations of various sizes and complexity. The first and
more common approach sees human organizations as systems made up of func-
tional components (Checkland, 1981; Foster-Fishman, Nowell,  & Yang, 2007b;
Trochim, Cabrera, Milstein, Gallagher, & Leischow, 2006). It emphasizes an analy-
sis of whole systems to understand deficiencies and inefficiencies in the system and
to identify opportunities for change that can lead to improved functioning of the
system as a whole. Within this approach, the emphasis is on establishing a common
vision or broad goals for the system and bringing system components and practices
in line with this vision to achieve these goals. Common assumptions are that a sys-
tem can be defined or bounded, that key components of the system can be identi-
fied, and that particular components or their interrelationships can be changed to
achieve desired system goals. A special issue of the American Journal of Community
Psychology edited by Foster-Fishman and Behrens (2007a) has provided a number
of examples of this approach.
A second less common perspective emphasizes small, unplanned changes that,
over time, lead to broader, unpredictable, and potentially transformative change
(Weick & Quinn, 1999). This perspective is reflected in a variety of approaches
with different origins, such as philosophy of science (Kuhn, 1962/1970), sociol-
ogy of collective behavior (Granovetter, 1978), and in theories of organizational
change building from complexity theory (Stacey, 2005; 2010; Stacey  & Griffin,
2005). Here, the emphasis is not on global- or system-level understanding but
rather on the local interactions among individuals. These approaches assume that

51
52 Per spectives on Transformative Change

it is local interactions across a number and variety of individuals and groupings

of individuals that produce broader change. Although the specific theories vary
in their core assumptions and applications, each emphasizes the importance of
novelty, creativity, and innovation as precursors to transformative change. The
implications for the promotion of transformative change lie in promoting com-
munication, reflection, and conflict, along with creativity and novelty in human
organizations and systems rather than in promoting control, efficiency, and homo-
geneity (Stacey, 2010).
In this chapter, I explore these two broad approaches, describing their assump-
tions, their applications, and their strengths and weaknesses. First, though, I provide
some opening thoughts on the meaning and challenges inherent in transformative
change that have influenced my analysis of these approaches. Then, I review each
of these perspectives, highlighting particular theories and applications, examining
potential roles for community psychologists and transformative change agents, and
assessing their strengths and weaknesses. The chapter concludes with a comparison
and discussion of these two perspectives.

Starting Points for Understanding Transformative

Change in Community Mental Health
Types of Change
There are different ways to distinguish among types of change. Most central to the
current discussion is Watzlawick, Weakland, and Fish’s (1974) distinction between
first- and second-order change. Whereas first-order change is change “that occurs
within a given system which itself remains unchanged” (Watzlawick et al., 1974, p.
10), second-order change entails transformative change “whose occurrence changes
the system itself ” (Watzlawick et al., 1974, p. 10). First-order change is ameliora-
tive, leaving the fundamental values and the operation of the system unchanged,
whereas second-order change transforms a system’s values, and operations (Nelson
& Prilleltensky, 2005).
Other distinctions concern how first- and second-order change are brought
about. Corrigan and Boyle (2003) stated that transformative change can be imple-
mented via evolution or revolution. According to their view, the transformation of
systems via evolution is “a necessarily slow and ongoing process that requires con-
sensus among all levels of stakeholders about changes in attitude and behaviour”
(p. 380). Evolutionary change is built on input and cooperative and complemen-
tary change by a variety of stakeholders at a variety of levels (e.g., staff members,
programs, organizations, policy). It is characterized as incremental, limited in
scope, and frustrating for those awaiting change. In contrast, revolutionary change
is more immediate and more comprehensive change. It is also more top-down
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 53

and autocratic, requiring those who have power and resources to act decisively to
impose their vision for change (Corrigan & Boyle, 2003).
Weick and Quinn (1999) distinguished between episodic and continuous
change. Episodic change refers to “infrequent, discontinuous, and intentional”
(p.  365) breaks from periods of equilibrium. They characterize this change as
slower, strategic, deliberate, formal, and disruptive. Continuous change refers to
change that is “ongoing, evolving, and cumulative” (Weick & Quinn, 1999, p. 375).
This form of change is said to be emergent rather than the product of some design.
According to Weick and Quinn (1999), “(t)he distinctive quality of continuous
change is the idea that small continuous adjustments, across units, can cumulate
and create substantial change” (p. 375).
The distinctions made by Corrigan and Boyle (2003) and Weick and Quinn
(1999) suggest that great change can come slowly as a result of small changes or more
abruptly as a result of targeted action. There are also important differences in their
views. Whereas evolutionary change involves rational, consensus-building change
among stakeholders (Corrigan & Boyle, 2003), continuous change is unplanned and
a product of continuous local adjustments in the daily interactions of system mem-
bers (Weick & Quinn, 1990). Both revolutionary (Corrigan & Boyle, 2003) and epi-
sodic (Weick & Quinn, 1999) change are positioned as responses to complacency
and inertia in organizations or systems. However, top-down revolutionary change
(Corrigan & Boyle, 2003) is characterized as appearing irrational to system members
who are affected by the change enacted by those in power to realize their own vision.
In contrast, Weick and Quinn (1999) identify planned, intentional change strategies
as central to creating episodic change. Episodic change comes about as the result of
change agents who act as prime movers and who engage and communicate within
organizations and systems at multiple levels to create change.
Corrigan and Boyle (2003) and Weick and Quinn (1999) agree, though, that
the different types of change they have identified can co-occur. At the broad macro-
level of policy, funding streams, or organizational structure, there can appear to be
periods of inertia or equilibrium (Corrigan & Boyle, 2003). At a more microlevel
(Weick  & Quinn, 1999), or at the level of “deep structures” (Corrigan  & Boyle,
2003) such as beliefs, values, or practices, there can be dynamic change. Seemingly
episodic or revolutionary change can occur as the result of a series of small-scale
changes within a system that overcomes inertia or equilibrium and produces a
radical wholesale change (Bishop, 1998; Corrigan & Boyle, 2003; Weick & Quinn,
1999).

The Challenge in Creating Transformative Change

in Community Mental Health
The promotion of transformative change in CMH systems is a daunting task.
Systems are infinitely complex, whether they are whole regional systems or particular
54 Per spectives on Transformative Change

organizations, and whether they are seemingly well-organized or fractured and

piecemeal. They contain many kinds of stakeholders, players, and partners. People
in these systems have different values, practices, and goals. They are members of
units, groups, or communities that also have varying values, practices, and goals.
The system can be made up of members who relate to each other frequently and
who are strongly interconnected or of members who rarely interact at all. These sys-
tem members may see each other as allies, as adversaries or competitors, or perhaps
not even appreciate that they are part of a system or connected to others.
Within these complex systems is a mix of formal and informal networks,
groupings, and relationships. In the formal realm, there are organizations or units
within organizations, such as teams or programs. The formal realm is one of rules,
structures, hierarchies, agreements, contracts, and the like. It consists of the most
apparent parts of a system and those seemingly the most amenable to change. The
informal realm is harder to identify. It consists of the interpersonal relationships
among network members who act within the formal subsystem groups. Although
these relationships may be informed by formal titles, roles, and responsibilities, the
manner in which these relationships are carried out reflect the values and habits
of the individuals and their interactional histories. The informal subsystems also
include actors and groups that are not represented by or included within the formal
entities but ultimately are most affected by the actions taken by these entities and
the effectiveness of the system as a whole: consumers of the services and their fam-
ily members. Although most affected by systems change, they have the least amount
of power in the system.
An appreciation for this complexity makes clear the inherent challenges in pro-
moting transformative change, whether by plan, revolution, or evolution. When
promoting transformative change, one must appreciate the great number of actors
and the potential barriers and resistance to change that may arise in particular
aspects of the formal or informal subsystems. One must account for those elements
of the system that are more invested in or amenable to change and for those ele-
ments that are resistant to or indifferent to the imperative to change. Even if one
aims to change particular elements within the broader system, such as a program,
a team, or an organization, one must appreciate the formal and informal elements
within the target of change, as well as the external influences (e.g., partners, funders)
that may impinge upon, regulate, subvert, or otherwise thwart the change agenda.

Two Perspectives on Transformative Changes: Planned

Systems Change and Continuous and Emergent Change
The following sections examine planned system change and continuous and emer-
gent change approaches. Table 3.1 provides an overview of the key elements of
these approaches.
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 55

Table 3.1  Overview of Planned Systems Change and Emergent

Change Perspectives

Characteristic Planned Systems Change Continuous and Emergent

Change
Focus of analysis Whole systems Local interactions and
emergent patterns
Nature of change Reorganization of system Local interactions and patterns
and/or change of system of interactions
components
Initiators of Change agents, stakeholder Organizational leaders, change
change representatives agents, novelty
Degree of High Low
planning
Control over Assumption of high level of No control
change process control
Direction of Top-down Bottom-up
change
Outcomes of Reorganized system based Unpredictable
change on planned change

Planned System Change

There is an assumption that transformative change is more episodic, eventful, and
abrupt and that first-order change features primarily in smaller scale and limited
changes and accommodations (Corrigan & Boyle, 2003; Evans & Loomis, 2009).
Indeed, most transformative change strategies have taken a more planned, episodic,
or revolutionary approach (Foster-Fishman, Nowell, & Yang, 2007b). The possibility
that more incremental or continuous change may also have transformative poten-
tial has received less attention in the CMH and community psychology literature. In
the following sections, I examine both episodic and emergent change approaches as
possible ways of achieving transformative change. The discussion of episodic change
focuses on whole planned systems change perspectives, as these appear to be most
common and most clearly elaborated. The discussion of emergent change is a bit
broader in scope because these approaches are less familiar and have received less
attention. I provide a number of historical examples of this kind of thinking to show
that it has been around in different forms for some time. I then focus on one particu-
lar perspective based on complexity theory and developed by Ralph Stacey (2005;
2010; Stacey & Griffin, 2005). In each of these discussions, I examine the strengths
and weaknesses of these approaches in terms of promoting transformative change in
complex mental health systems as I have just characterized them.
56 Per spectives on Transformative Change

Systems and Systems Thinking

One perspective on transformative change focuses on episodic, planned,
whole-system change. Although the perspective encompasses a number of more
specific approaches, they all emerge from the application of the metaphor of
“system” to human organizations, including CMH systems. A  system is defined
as a whole made up of interacting or interdependent components (Checkland,
1981; Foster-Fishman et al., 2007b; Trochim et al., 2006). The concept of system
“embodies the idea of a set of elements connected together which form a whole,
this showing properties which are properties of the whole, rather than properties
of its component parts” (Checkland, 1981, p.  3). According to Peirson, Boydell,
Ferguson, and Ferris (2011), “(o)rder and predictability are produced in systems
through hierarchies of authority (relative power) and/or function (sequenced/
coordinated action) and are maintained by explicit and/or implicit rules regulating
the nature of vertical and horizontal relationships and action” (p. 308).
According to Foster-Fishman et al. (2007b), “systems change refers to an inten-
tional process designed to alter the status quo by shifting and realigning the form
and function of a targeted system” (p. 197). The favored analytic approach is sys-
tems thinking, in which a focus is placed on system and the sequential or hierar-
chical arrangement of its constituent components of a system (Checkland, 1981).
Systems thinking is “a general conceptual orientation concerned with the interrela-
tionships between parts and their relationships to a functioning whole, often under-
stood within the context of an even greater whole” (Trochim et al., 2006, p. 529,
emphasis in original).
Checkland (1981) distinguished between hard systems thinking and soft systems
thinking. Whereas hard systems thinking is more appropriate to disciplines such as
engineering, soft systems thinking is more appropriate to the social sciences. Hard
system thinking adopts a realist perspective in which there is an assumption that the
world or a particular organization is or is made up of systems. In contrast, a soft sys-
tems approach emphasizes systems thinking as a mode of inquiry or thinking about
organizations. Checkland (1981) proposed a soft systems methodology that recog-
nizes the subjective nature of systems. Different system members can have different
perceptions of how the system functions in terms of its components, its structure,
and its goals. Change processes should strive to understand and accommodate such
disparate views (Foster-Fishman et al., 2007b).
A first step in systems change is system modeling, or the representation of how
the system functions (Checkland, 2000). Because there are a variety of perspec-
tives in the system among the system members, a number of models should be
constructed to account for these different perspectives. These models then serve as
a basis for inquiry among system members. By examining the different models, the
model that best represents the system is identified. This model can be used to study
the system and the challenges it faces and to develop actions for improvement by
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 57

changing or rearranging the system’s elements. A soft systems methodology would

appeal to community psychologists in its recognition that human systems do not
function as do mechanical, biological, or natural systems (Foster-Fishman et al.,
2007b). The soft systems approach would also appeal to community psycholo-
gists in its openness to collaborative and participatory inquiry and action research
(Checkland, 2000).

Planned System Change and Community Psychology

The interest of community psychologists in planned system change likely arises
from the long-standing focus of the field on locating human problems in adapta-
tion beyond the individual level (Dalton, Elias, & Wandersman, 2007; Nelson &
Prilleltensky, 2005). This focus is rooted in the beliefs that dysfunction and malad-
aptation arise as a result of a disabling fit between people and their environments
and that there is greater impact from broad preventive changes in organizational,
institutional, or community systems than in reactive individual treatment or reha-
bilitation efforts (Dalton et al., 2007; Nelson & Prilleltensky, 2005). Interest in sys-
temic change has been encouraged by the widespread adoption among community
psychologists of ecological perspectives that identify how individual behavior is
linked to the actions of others within and outside of the systems within which indi-
viduals act (Bronfenbrenner, 1979; Kelly, 1966).
Community psychologists have advocated a number of approaches to system
change that, to a greater and lesser degree, highlight systems thinking. Nelson and
colleagues (Nelson, Lord, & Ochocka, 2001; Prilleltensky & Nelson, 2002) have
described a process for transformational organizational change that seeks to bring
practices and programs in line with an organization’s vision and values. The approach
is influenced by resource mobilization theory that highlights how social change is
more of a political process rather than a process of rational problem identification
(Nelson et al., 2001). A social movement must be created within an organization to
create significant and lasting change. Their approach is also influenced by learning
organization theory (Senge, 1990) in which open, participatory, and team learning
processes are used to bring organizations in line with an organizational vision and a
sense of shared purpose (Nelson et al., 2001). Learning organization theory builds
on systems thinking, or “as seeing change as an interactive process in a series of
interrelationships” and “a critical focus on the embedded contextual features of the
environment (e.g., resources, culture)” (Nelson et al., 2001, p. 103).
In this approach, the focus is on transforming programs and organizations rather
than on changing individuals (Prilleltensky & Nelson, 2002). The process involves
working collaboratively with organizations and the disadvantaged people whom
the organization serves to identify a vision and values that reflect personal, rela-
tional, and collective well-being. Then, collaborative and egalitarian partnerships
between the organizations and the consumers of their services are used to challenge
58 Per spectives on Transformative Change

the current assumptions of the organization and to identify alternative assumptions.

These alternative assumptions can build on the strengths and skills of the consum-
ers, rather than their deficits. Finally, new practices are developed that are consistent
with the new vision, values, and assumptions.
Similarly, Evans and Loomis (2009) identified three necessary conditions
for transformative organizational or community change:  (a)  building readiness
for change, (b)  creating a coalition for change, and (c)  grounding the change in
shared vision and values. Building readiness for change involves creating a belief
among system stakeholders that change is required and possible. Evans and Loomis
state that it is crucial “that a critical mass of individuals in a system feels a sense of
urgency for change” (p. 376). A second step, involves creating a coalition for change.
A coalition consists of individuals representing a range of groups and organizations
that can mobilize resources and build power and momentum for change. The group
would be organized and operate according to the values of democratic participation
and empowerment.
A third step involves grounding change in a vision and values. It involves iden-
tifying an alternative vision for a changed community or system and the identifi-
cation of the values on which to ground the change process and desired change.
Specifically, Evans and Loomis (2009) identify the values of collaboration, inter-
dependence, social justice, and equality as key to truly transformative. To deter-
mine what needs to be changed, there must be an open exploration among coalition
members of the problem situation. Strategies for change extend beyond changing
individual beliefs and practices to include intraorganizational change in policies,
practices, and program structures; interorganizational change in partnerships and
collaborations; and extraorganizational change in funding bodies and systemic
structures (Evans & Loomis, 2009).
Adopting a more explicit systems thinking approach, one more directly influ-
enced by the soft systems perspective, Foster-Fishman et  al. (2007b) identified
four key steps for transformative whole system change: (a) bounding the system,
(b) understanding the fundamental system parts as potential root causes, (c) assess-
ing system interactions, and (d) identifying levers for change. Bounding the system
involves efforts to define the problem situation and to define the system by identi-
fying system levels, niches (e.g., programs and activities), organizations, and actors
(Foster-Fishman et al., 2007b). There are four fundamental system parts that can be
leveraged for change: system norms, system resources, system regulations, and sys-
tem operations. System norms consist of attitudes, values, and beliefs constituting
the normative or “deep structure” of a system (Foster-Fishman, et al., 2007). System
resources take many forms, including human, social, and economic resources and
opportunities. System regulations include the policies and procedures within a sys-
tem; in essence, these work as directives for the system functions. Finally, system
operations include power within a system and decision-making processes within a
system.
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 59

For Foster-Fishman et al. (2007b), the targeting of change requires an under-

standing of system properties, which include “the underlying principles that guide
system behavior” (p. 198). They highlight the complexity inherent in planned sys-
tem change, noting that change in one part of the system will lead to a desired out-
come only if changes happen in other related parts of the system. Therefore, they
recommend an assessment of system interactions and interdependencies. Because
there are no independent system components, it is important to understand how
components interact, relate, and influence one another, as well as to understand
interaction delays or lags in the influence of one component on another. Whereas
the impact of change in one component on another may be immediate, in other
cases, the effects may be delayed in time. Not accounting for these delays may lead
to under- or overestimating the effect of a change process. A final step is leveraging
systems change. Identifying potential levers for change includes identifying those
system components that are most likely to trigger widespread change, which com-
ponents are more amenable to change, and how change in components will affect
other aspects of the system (Foster-Fishman et al., 2007b).

Case Examples
There are a number of useful examples demonstrating the use of planned strate-
gic change strategies. For example, Nelson, Lord, and Ochocka (2001) described
a change process within a local housing organization in Ontario, Canada, called
Waterloo Regional Homes for Mental Health. The change process was initiated
because members of the organization believed that its housing and programming
was outdated. At that time, the organization’s housing largely consisted of group
home settings with support focused on rehabilitation. Over time, there was a shift
in the organization’s assumptions spurred by contact with new ideas and leaders in
the field. The shift was reflected in an increasing commitment to the promotion of
empowerment, independence, and community integration of tenants rather than
“caring for” and “looking after” them (Nelson et al., 2001, p. 112).
These changing attitudes and new values led to a strategic planning process to
reorient the housing and programming practices. The process was led by a plan-
ning committee comprised of tenants, management, frontline staff members, and
board members. The process set out to clarify the agency’s mission and goals, to
contrast the existing services with the mission and goals, to establish short- and
long-term objectives for change, to create action plans to achieve this new mission,
and to evaluate the outcomes from the change process. The change process was
shaped by learning organization theory (Senge, 1990) in the provision of training
of stakeholders to participate in the process, a commitment to maximum participa-
tion of stakeholders in the change process, and external consultation to assist with
planning sessions (Nelson et  al., 2001, p.  113). Outcomes from the change pro-
cess included new service principles that reflected the organization’s new values of
60 Per spectives on Transformative Change

self-determination, empowerment, and community integration; increased tenant

participation in the form of a residents’ council; and increased participation of staff
members in organizational decision making and training (Nelson et al., 2001).
Suarez-Balcazar et al. (2007) described a change process to improve the qual-
ity of food available to students in the Chicago Public School system (CPS). The
change process was influenced by Lewin’s (1951) social ecological model (SEM) as
well as soft systems methodology (Checkland, 1981; 2000). Suarez-Balcazar et al.’s
(2007) ecological analysis identified people and groups at five levels that played
roles in children’s food choices in schools: (a) individual (students), (b) interper-
sonal lifestyle issues (peers, family members, and teachers), (c) community (school
system), (d) institutional (vendors), and (e) social structure, policy systems (US
Department of Agriculture’s National School Lunch Program and the Food and
Drug Administration). This identification enabled them to consider the roles played
by all relevant stakeholders in their change process.
The change process began with an existing consortium of community-based
organizations—the Chicago Food System Collaborative, which identified a lack
of access to healthy foods within the schools and the local communities—and
implicated the community, institutional, and social structure/policy systems lev-
els in the children’s food choices and poor health (Suarez-Balcazar et al., 2007).
Two change agents—a food advocate and mother of children in the school system
and the executive director of a not-for-profit organization focused on children’s
health—were also instrumental in moving the change process forward. Following
the release of a report identifying high rates of obesity in children in the school
system, the change agents began to meet with the school system and build a net-
work of contacts in the city. These networking activities led to the development
of a diverse task force comprising more than 60 individuals representing 32 orga-
nizations. The task force also invited the school district and the food vendors and
suppliers to work with them. The task force identified the priorities of increasing
access to healthy school breakfast, lunch, and after-school meals and improving
nutrition education.
To achieve these goals, the task force first worked at the level of policy by estab-
lishing nutritional standards for food sold in vending machines and restricting where
the machines could be placed in schools. Then the task force worked on a number of
more specific projects, such as working with food service vendors to introduce salad
bars. To complement the introduction of the salad bars, a nutrition education com-
ponent was implemented in some schools (Suarez-Balcazar et al., 2007). Thus, the
change process succeeded in mobilizing a range of system players, as well as making
changes at the various ecological levels affecting children and their food choices
in school. Suarez-Balcazar et al. (2007) report that findings from the evaluation of
the change initiative showed the importance of multicomponent change because
a greater impact of the initiative was found in schools that implemented both the
salad bars and the educational components.
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 61

Roles for Community Psychologists in Planned Systems Change

The foregoing discussion and case examples suggest an important role for commu-
nity psychologists in planned systems change as external change agents. As external
change agents seeking to bring about transformative change in CMH systems, the
values that guide the work of the change agent may be as important as the skills and
knowledge that are used to accomplish the work. In a transformative change process
in CMH, one of the most significant and important outcomes is the achievement
of a stronger voice, greater empowerment, more effective citizenship, and greater
social integration for people with mental health challenges (Nelson et al., 2001).
To achieve these outcomes, it is important that our knowledge, skills, and practices
complement these goals. This is clearly reflected in the approaches just described,
which call for open, participatory, and collaborative processes. Still, not all system
players may wish to see the system shift toward these outcomes. In part, resistance
may be due to differences in values, differences in perspective, or an unwillingness
to cede power.
Evans and Loomis (2009) have identified the role of the “critical friend” that
external change agents can play in organizational and systems change processes.
A  critical friend is an ally and is supportive of the organizations involved in the
change process, but is also one who provides observations, feedback, and reflec-
tions. The critical friend can point to unacknowledged assumptions in a current
system or a desired change or identify power relationships that affect or will be
affected by the change (Evans  & Loomis, 2009). Beyond the critical friend role,
there is a variety of knowledge and skills that community psychologists can bring to
bear. These can include knowledge of community intervention theory (Nelson &
Prilleltensky, 2005) and skills in ecological analysis, community organizing, coali-
tion building, systems analysis, participatory action research methods, program
evaluation, and outcome monitoring.

Strengths and Weaknesses of the Planned Systems Change Perspective

The planned systems change approach has clear appeal to community psycholo-
gists. It reflects the interests of community psychologists in change beyond the
individual level, with an endorsement of community psychologists’ interest in eco-
logical thinking. In fact, Peirson and colleagues (2011) have introduced an appli-
cation of systems change thinking that incorporates ecological principles. These
approaches recognize the interconnections among system elements and the need to
understand the rippling effects of change throughout a system. The planned systems
change approach also appeals to the goals and values of community psychologists
in the opportunities it provides for significant collaboration among system stake-
holders, including often disadvantaged and silenced members. In the application
of systems thinking, the approaches described here have allowed for the influence
of soft systems factors and have emphasized the subjective and human elements in
62 Per spectives on Transformative Change

the change process. As Evans and Loomis (2009) note, “(c)hange happens because
people come together to make it happen” (p. 373).
Despite its appeal, there are also some limitations to planned systems change.
Planned system change must at times seem like trying to roll a very big, very heavy
rock. It is too big and daunting to roll on your own, so you need to enlist a large
number of others to help. They may ask why they are going to invest their time and
energy in this project. Why must the rock move? Why now? What’s wrong with
where it is? Should people be convinced to move the rock, actually getting the rock
to move requires a lot of exertion and coordination of effort. They may wonder if
there will be some benefit for them and whether their efforts might be better used
elsewhere. Once the rock gets rolling, its weight and shape mean that it is now out of
control until it comes crashing to a stop. Once it lands, it may not have landed where
we had hoped, or, worse, it may have inadvertently crushed something in its path. In
any case, the first roll may have only been one step in moving the rock to where we
want it, but we may find that those who we have enlisted in the project are exhausted
and unwilling for now to help us in keeping the rock moving to where we want it.
In short, whole-systems change requires a whole lot of effort, by a large number of
people, to move systems in one direction with likely unpredictable results. Once
the change project is done, it can be difficult to enlist the system in further change
because the initial change was tiring and distracting from other priorities or goals.
The system may simply become re-entrenched in a new form which itself may pro-
duce iatrogenic consequences. What was once a systemic solution to a problem may
in turn create unforeseen problems.
A further limitation may lie in the nature of CMH systems. Comprised as they
are by often loosely connected but mostly independent agencies, it can be quite dif-
ficult for external change agents to bring these groups together to create change in
the absence of some higher level directive or some shared sense of an imperative to
change. Becoming enlisted in change requires agencies to agree to provide time and
resources toward the initiative, as well as a commitment to change to some extent
their practices, if not the nature of the services they provide. Although certainly not
impossible, it would be quite difficult to mobilize the variety of stakeholders to cre-
ate whole-system change.
It is notable, though, that in these case examples the change processes appeared
to capitalize on other, smaller changes that had occurred. In the first example, the
housing agency change initiative was built on changes in beliefs that were attributed
to new ideas and contacts with leaders in the field. Similarly, in the second example,
the school-based change process was built on new evidence in the form of a released
report. Although not stated in the article by Suarez-Balcazar et al. (2007), it is likely
that the extensive coalition that was rapidly assembled reflected a similar set of
beliefs that had been adopted by a variety of shareholders in the system. In the ear-
lier discussion of types of change, it was noted that both planned episodic change
and continuous change were not mutually exclusive. Indeed, one could draw the
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 63

conclusion from these examples that, in the absence of prior, smaller, incremental
change processes, planned episodic change may be exceedingly difficult to achieve.
A final limitation may lie in how systems thinking itself may limit transformative
change. Although we may think of human affairs as “systems,” we must recall that
the concept is being applied metaphorically (Stacey, 2010). Although the use of sys-
tems thinking can identify important avenues for change, an overly rigorous appli-
cation of the metaphor can also limit how we think about what can be changed and
how it can be changed. Systems thinking can reify human activity as a system and
limit our thoughts about change to system solutions, such as the rearrangement,
substitution, deletion, or improvement of system elements. In other words, taking
the system as a given may restrict our thinking to how the system can be tinkered
with, rather than changed into something completely different.

Continuous and Emergent Change

A second approach to understanding transformative change emphasizes unplanned
transformative change that emerges from small incremental changes. Despite the
assumption that transformative change requires episodic planned change, a number
of theories emphasize the power of microlevel changes to produce transformative
change. The particular theories that I describe here come from a variety of fields,
but all share an emphasis on novelty, variability, unpredictability, and interaction as
a basis for large-scale change.

Kuhn’s Study of Scientific Revolutions

One of the more well-known examples comes from Thomas Kuhn’s (1962/1970)
study of scientific revolutions. According to Kuhn (1962/1970), periods of normal
science exist when there is broad consensus, or a shared paradigm, among scientists.
As scientists go about their work during these periods, their studies may produce
anomalous findings that appear at odds with prevailing assumptions. Although
some of these anomalies are seemingly incorporated within the prevailing para-
digm, others are not. Although most scientists will overlook or choose to ignore
these anomalies, for a small number, they will spark some interest and lead to new
avenues for inquiry. The pursuit of these anomalies and the accumulation of new
findings that also do not fit within the prevailing paradigm may lead these scientists
to more explicitly challenge the prevailing paradigm. When an increasing number
of scientists take an interest in pursuing the growing anomalous findings, disrup-
tion in the period of normal science can occur. This disruption can lead to a crisis,
which, in turn, can precipitate the ascendency of a new paradigm and a new period
of normal science.
According to Kuhn (1962/1970), scientific revolutions are similar to
political revolutions. Scientific revolutions are created by a growing sense of
64 Per spectives on Transformative Change

dissatisfaction, at first within a small community, with the ability of prevailing

institutions or scientific paradigms to solve the problems they were intended to
solve. As a growing number of people become estranged from political or scien-
tific life, they begin to explore novel or competing ideas, and some commit to
developing proposals for new institutions or paradigms. This process may lead
to a competing institution or paradigm set against the prevailing institution or
paradigm. The ascent of the new paradigm occurs through an increasing shift in
the allegiances of scientists to the new emerging paradigm, as well as through the
replacement of older scientists with newer ones for whom the emerging para-
digm has become familiar.

A Threshold Model of Change

Kuhn (1962/1970) shows that transformative change does not require a plan. The
key ingredients are novelty, the willingness of a few to pursue that novelty, and the
increasing interest and willingness of a growing circle of others to become invested
as these pursuits show some promise. Similar ingredients were identified in the
threshold model of change offered by Granovetter (1978), elements of which were
later popularized by Gladwell (2000) in his book Tipping Point: How Little Things
Can Make a Big Difference. Granovetter (1978) argued that collective behavior
such as riots could not be explained only by the participants’ norms, preferences,
motives, and beliefs. That is, participants in riots do not share a common set of
deviant values, nor do they all adhere to a shared set of new norms that emerge
in that situation. Instead, Granovetter (1978) contended that it was the variation
in values and norms within the group that was the most important influence on
the observed behavior. More specifically, Granovetter (1978) argued that “a very
small change in the distribution of preferences generates a large difference in the
outcome” (p. 1421).
According to Granovetter (1978), each person has a threshold that must be
reached before he or she will engage in novel behavior. For Granovetter, a “thresh-
old” is the “proportion of the group he [sic] would have to see join before he would
do so” (p. 1422). Some people have a low threshold for engaging in a new behavior
and are ready to be among the first to participate. They perceive more benefits and
fewer risks from engaging in the behavior earlier. Others have a higher threshold
and are not willing to engage in the behavior until others do so because they per-
ceive fewer rewards and greater risks. As more and more individuals find that their
thresholds are reached and thus engage in the behavior, increasingly conservative
individuals may perceive a shift in the balance of benefits and risks and eventually
also participate. When these thresholds are normally distributed in a population,
the wide-scale adoption of the behavior can come rapidly and suddenly when a
majority of individuals’ thresholds are reached and they collectively engage in the
behavior.
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 65

An Organic Model of Change

Bishop (1998) proposed an organic view of human organizations that also empha-
sized unplanned change based on variability. Unlike “a machine, the development
of an organism requires no blueprint, no master builder, no controller” (Bishop,
1998, p. 408). In contrast to machines that change either through deterioration or
by improvement brought about through some external force, organic systems have
the capacity to “self-organize” into new and better forms through the introduction
of novelty. Bishop contends that human organizations are not machines that require
top-down control, “but rather bottom up colonies of interacting entities, that
can self-organize into novel, even better forms” with emergent properties (1998,
p. 408). What keeps organic and human systems dynamic, evolving, and adaptive is
novelty. In organic systems, novelty is introduced via genetic mutations that either
increase or decrease an organism’s fitness relative to its environment. In human sys-
tems, novelty comes in the form of invention, new resources, events, or ideas within
the system, or through interaction with the environment and other human systems.
Although most innovations may fail, it is endless variation and novelty that keeps
the systems dynamic and provides the potential to respond to new challenges that
arise (Bishop, 1998).
Despite this dynamic undercurrent of change, there are also strong countervailing
forces for stability that make transformative change rare (Bishop, 1998). In human
organizations, these forces of stability are human biological endowments (e.g., abili-
ties, tendencies, and physical limitations) that cannot be easily transcended. A sec-
ond force for stability is culture. Culture provides generally accepted beliefs, norms,
and customs that are rarely challenged and are prescriptive for behavior and expec-
tations and that hence change slowly over time. A third force for stability, agree-
ments, includes laws, policies, and procedures that prescribe and regulate human
activity. These agreements tend to become entrenched once enacted and difficult to
change (Bishop, 1998). According to Bishop (1998), these forces of stability con-
strain natural, incremental change, often longer than they should. “The forces (of
stability) overplay their role as guardians of tradition, maintaining the status quo
beyond its useful life” (p. 410) such that when significant change comes, it “usually
comes swiftly with devastating consequences for the status quo” (p. 410). The result
is transformative—but ultimately unpredictable—change.

Complex Responsive Processes and Change

Yet another approach to continuous or emergent change builds on the concept
of complex adaptive systems. Complex adaptive systems thinking involves an
appreciation for “complexity, patterns and interrelationships rather than focus-
ing on cause and effect” (Health Foundation, 2010, p.  6). The concept emerged
from the natural sciences based on a recognition that the universe is made up a
variety of systems, such as weather systems or immune systems, “that are complex
66 Per spectives on Transformative Change

and constantly adapting to their environment” (Health Foundation, 2010, p.  6).
These systems comprise a large number of independent agents that form patterns
based on their constant actions and reactions to each other. These unplanned pat-
terns emerge from the increasingly coordinated interactions among these agents.
These patterns of interaction are said to both emerge from interaction, but then also
shape the future behavior and interactions of the agents (Stacey, 2010). Thus, this
approach assumes that order or a system does not require preplanning or a prede-
termined structure or higherarchy, but instead can emerge from the actions of indi-
vidual actors that become coordinated or synchronous over time. These are said to
be self-organizing systems that emerge from local interactions that both form, and are
formed by, broader patterns (Stacey, 2010).
Similar to other examples in this section of the chapter, change occurs as a result
of novelty and diversity in these local interactions. This novelty and diversity can
come from changes in the behavior of agents that deviate even in small ways from
established patterns. Novelty and diversity can also be introduced from the environ-
ment when it introduces new elements or presents new challenges to the agents.
This novelty requires adaptation on the part of the agents, which produces new
patterns of behavior. Because natural systems are not closed, they are continuously
adapting to novelty.
Recognizing that people do not act in the same way as agents in natural complex
adaptive systems, Stacey (2010) proposed an analogous application of the concept
to human affairs. The distinction that Stacey draws attention to is that, due to their
particular values, preferences, or tendencies, people do not always adapt to or fit
in with one another. In contrast, people communicate, relate, and respond to each
other in an evolving process of meaning creation, creating what he calls complex
responsive processes. Stacey (2010) identified communicative interactions as the
foundational process in organizational life. In fact, Stacey (2005; 2010)  has pro-
posed that organizations are not objects or systems at all, but rather are more prop-
erly understood as processes of human relating because it is in the local, everyday
microprocess of relating, sometimes cooperative, sometimes conflictual, that every-
thing organizational happens (Stacey, 2010). In essence, there is no organization
independent of people coming together, in everyday communicative interactive
processes, to talk about and to make the organizations happen (Stacey & Griffin,
2005). If organizations exist, they exist as imaginative constructs that emerge in inter-
personal interactions (Stacey, 2005).
Stacey (2010) contends that traditional approaches to organizational manage-
ment and change overestimate the control of managers and system planners. Rather
than being predetermined, organizations are social objects that emerge from the
self-organizing interactions of agents within local, small social units (Stacey  &
Griffin, 2005). It is the myriad of local interactions within and across these social
units that produce widespread organizational patterns, themes, or organizational
values. In turn, these wider patterns, themes, or organizational values also influence
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 67

local patterns of interactions. Stacey (2010) points to the importance of how

broader organizational themes are particularized in local interactions. Where there
is a broad organizational set of values, a plan, a directive, a regulation, or a policy,
what matters is how individuals makes sense of it and the choices they make in their
local interactions with other organizational members. Some may embrace it. Some
may try to ignore it, not see it as relevant, or see it as consistent with what is already
done. Others may resist it by incorporating it within their well-established and com-
fortable practices. Because different individuals make different choices, there is the
potential for conflict that must be resolved in order for synchronous, productive,
or coordinated work to occur. It is this process of working it out together that leads
to change in an organization. Through everyday conversation, together, individuals
within social units work out how the broad theme will be particularized in everyday
work. These changes are local, but they are occurring locally throughout a team, a
program, an organization, or a system. It is the eventual patterning of these local
interactions that produces broader change.
Change also comes in the absence of broad directives. Novelty is introduced by
small changes in individual behavior over time, as well by as the introduction of new
people, ideas, resources, or inventions. Novelty can come from the environment in
the form of changes in other teams, programs, or organizations, or by the addition
of new or deletion of existing resources. It is this novelty that continuously changes
local interactions, shifting patterns of interactions. From this perspective, healthy
organizations are those in which there are rich, diverse, and complex conversations
(Stacey, 2010; Stacey & Griffin, 2005). From these conversations, novelty is gener-
ated that alters patterns of interaction and makes organizations dynamic, vibrant,
and responsive to new challenges. When this complexity is constrained or absent,
with the same few conversations occurring over and over, behavior in organizations
becomes repetitive, and the experiences of the organization are “deadening, oppres-
sive and neurotic” (Stacey, 2005, p. 480). Moreover, the organization loses its abil-
ity to evolve and respond to new demands placed on it. However, when patterns
of conversations in organizations are changed, organizations are transformed, and
people are left “feeling more enlivened, often tense and anxious, and capable of far
more spontaneous, creative action” (Stacey, 2005, p. 480).

Case Example
Rowe and Hogarth (2005) described a change process designed on principles
from complex adaptive systems thinking. This case exemplifies both the unplanned
nature of these change processes and the use of conversation as the medium for
change. Rowe and Hogarth (2005) examined the use of conversation among public
health nurses in the United Kingdom as a means of identifying current modes of
thought, destabilizing existing assumptions and patterns of behavior, and develop-
ing a new vision and guidelines for practice. The goal of the change process was to
68 Per spectives on Transformative Change

develop and implement new roles for health visitors working predominantly with
families with preschool-aged children and school nurses providing school-based
health-promoting learning programs, screening, and individualized care as neces-
sary (Rowe & Hogarth, 2005, p. 397).
The change process was initiated because of a concern among primary care trust
(PCT) managers that the services offered by the public health nurses were outdated
and rigidly implemented based on preexisting organizational structures and poli-
cies. Although they believed that a more flexible and responsive service that was
equitably distributed across the city was needed, they were unsure of the direction
that change should take. Therefore, “an exploratory and reflective change process
was required that had a ‘good enough’ vision rather than a preordained strategic
plan” (Rowe  & Hogarth, 2005, p.  398). The change process, which included the
authors as change agents, the PCT, and its practitioners, unfolded without prede-
termined goals. Instead, it was decided that a vision would emerge from “a continual
process of learning, envisioning, clarifying and experimenting” (p. 398).
This change process sought to create the conditions under which change could
emerge rather than engineering change. These conditions were nurtured through a
variety of activities including reflection, debate, the development of new relation-
ships, tailored education programs, and the recognition of potential new structures
and processes (p. 398). The change process was initiated with workshops in which
professionals and managers came together to envision possible futures and the
means of achieving them. Through discussion and debate, the key elements of a
new vision were identified. The initial and subsequent workshops included analyses
of current practices and implications for future practices.
The process was not without challenges because some participants experienced
anxiety, perhaps due to the uncertainty of the process and the implications for
themselves. Nonetheless, these discussions were seen as ways for practitioners to
gain an understanding of their own views of their work and to contrast them with
those of their peers. The discussions and debates enabled practitioners to see dif-
ferences in their views and try to reconcile them. The discussions also enabled the
identification of a range of attractors (i.e., behaviors or values that people in organi-
zations are drawn towards; p. 399) among staff members. Whereas some described
favoring individual case work, others favored working at the community level. The
inclusive change process also created high levels of expectations for change among
the practitioners, facilitated the development of new relationships among them,
and enabled them to challenge conventional thinking and develop their own unique
local solutions.

Roles for Community Psychologists in Continuous and Emergent Change

These theories and case example offer a number of options for community psychol-
ogists who wish to act as change agents promoting transformative change. At first
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 69

glance, however, they may also raise some concerns. These approaches all emphasize
that the outcomes of change are unpredictable. Transformative change may occur as
a result of a change process, or it may not. Transformative change that is emancipa-
tory and empowering for marginalized people may occur, or it may not. To work to
spur emergent change means to cede control over the process and its outcomes. In
some ways, this is not a completely foreign concept for community psychologists.
Participatory action research and community development efforts require commu-
nity psychologists to cede control and to trust that that the processes will produce
useful and beneficial results.
Emergent change also casts a different perspective on ecological thinking. It cer-
tainly emphasizes the embeddedness and the interdependencies of people that are
central to ecological approaches. It eschews, however, broad or multilevel thinking
in favor of attention to the relationship between microlevel interactions and higher
level patterns.
The implications of emergent change also challenge some prevailing trends
toward accountability in CMH systems (Stacey, 2010). Evidence-based practice,
program fidelity, outcome monitoring, and performance management emphasize
greater control over what should be funded and implemented in CMH systems,
how it should implemented, and how it should be monitored. Each in its own way
emphasizes greater uniformity, regulation, and control in CMH programs, organi-
zations, and systems. From an emergent change perspective, uniformity, regulation,
and control would limit the novelty, variability, and innovation that are essential for
dynamic systems and transformative change.
Stacey’s (2010) complex responsive processes approach further challenge
these trends in their emphasis on particularization over broader, top-down narra-
tives or programs. Evidence-based practice, for example, has emphasized the dis-
semination of demonstrated effective program models across a variety of contexts.
Fidelity assessment has emphasized the verification that the key components of
programs have been faithfully implemented according to the program model. The
process of particularization, however, alerts us to the importance of attending to
how, within daily conversations and interactions, meaning is made of these pro-
grams and how daily practice occurs. It is these daily interactions that are the pro-
gram, and these daily interactions may or may not be in line with the intentions of
the original program designers. Trickett and Ryerson Espino (2004) have pointed
to the importance of an ecological understanding of contexts for supporting the
adoption of practices and ensuring the success of collaborations. Similar ideas have
been advanced by Miller and Shinn (2005) who pointed to the potential conflict
between the values of organizations and new programs. When these values conflict,
it will limit or alter program implementation, or it may the risk limiting the activism
and dynamism of community-based agencies when such programs are introduced.
For community psychologists who embrace this concept of emergent change,
there are, nonetheless, a number of roles that emerge. One of the keys for change
70 Per spectives on Transformative Change

agents is to find ways to inject novelty, diversity, and innovation into conversations in
CMH systems. In part, this may come from the inclusion of a broader array of voices
in conversations, including the voices of consumers and family members. These
voices can be included in our advocacy work and change processes, as was noted in
the description of planned change strategies. These voices can also be included in
our use of collaborations and research approaches and methods (Trickett & Ryerson
Espino, 2004). This includes the use of participatory action research that involves the
maximum participation of those affected by a problem under study in the research
process (Nelson, Ochocka, Griffin,  & Lord, 1998). Participatory action research
can help to bring greater diversity to our research questions and findings, as well as
the use of a greater diversity of qualitative and quantitative research methods.
For Stacey (2005; 2010; Stacey & Griffin, 2005), implications for practice entail
new thinking about leadership. Leaders play key roles in widening and deepening
communication to promote organizational health. Rather than dictating conversa-
tions in organizations, leaders must recognize ongoing conversations, reflect them
back to organizational members, and encourage and support conversations that are
creative, insightful, and generative of new ways of thinking about the work being
performed. The leader must be vigilant, engaged, and attuned to the life of the orga-
nization if he or she is to observe how new ideas or organizational themes are par-
ticularized in everyday conversations and daily work. These ideas suggest interesting
avenues for research and training in topics such as organizational leadership and
consulting. It also suggests the importance of research and program evaluation that
attends to processes as much as it does to outcomes. When considering, for example,
potentially transformative concepts such as recovery (Anthony, 1993), whether or
not recovery-oriented policies are adopted is only part of the issue. The more impor-
tant question is how these policies are particularlized in everyday practice and how
thinking and talking about consumers of mental health services have shifted.
Weick and Quinn (1999) note that large-scale emergent change is more likely
when there are “tightly coupled interdependencies” (p.  375) among people and
social units. In contrast, when there are looser interdependencies, change in smaller
units is likely to lead to “pockets of innovation” (p.  375). Community mental
health systems, as well as many larger organizations, may have looser interdepen-
dencies rather than tight couplings. A role for community psychologists is to help
create and support networks that are likely to lead to tighter interdependencies,
increased conversation, and greater opportunity for innovative ideas to be broadly
shared and adopted. Examples can include interagency coalitions, as well as more
practice-focused professional learning communities and communities of practice.
Communities of practice refer to groups of people, typically service professionals,
who share a common interest in some area, such as the delivery of a particular type
of program (Wenger, 1998). These communities share experiences and information
and engage in mutual problem solving in their work. Professional learning com-
munities are groups of educators who come together to collaborate on curriculum
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 71

development or improvement or on wholesale transformation of schools or edu-

cational districts (Annenberg Institute for School Reform, 2004; DuFour & Eaker,
1998; Hord, 1997; Westheimer, 2008). The work of these groups typically involves
five elements:  (a)  developing a common vision, values, and goals for the group;
(b) sharing information, resources, and experiences; (c) collective inquiry to deter-
mine possible strategies for addressing common challenges; (d) experimentation
to implement strategies and determine their efficacy; and (e) ongoing learning and
improvement (DuFour & Eaker, 1998). Developing, supporting, and studying such
groups can help to generate new innovations in communities and help to dissemi-
nate them to others in the system.

Strengths and Weaknesses of the Emergent Change Perspective

The strengths of the emergent change perspective lie in its generativity in terms of
suggesting different ways to work toward transformative change. It suggests a num-
ber of ways in which community psychologists can work in and with organizations
and communities to spur transformative change without relying on the mobiliza-
tion of broad coalitions and significant resources for systems change. Nonetheless,
some of the implications for action are still vague, and there is a shortage of specific
strategies that could be adopted. It is unclear what the term “conversation” specif-
ically refers to, how it can be influenced, and how it can be stimulated. Another
limitation is that no specific mechanism is identified for including the voices of
marginalized people who are not the members of the formal organizations in these
conversations. This may be due to the fact that these emergent change concepts
have not yet been applied to CMH systems, and it may be a future challenge for
change agents to examine how these voices can be included in these organizational
conversations. For community psychologists, there is also a lack of strategies for
overcoming resistance to change, particularly at higher hierarchical levels.
The emergent change perspective, particularly as articulated by Stacey (2005;
2010; Stacey  & Griffin, 2005), perhaps underestimates the importance of stabil-
ity and regulation. Regulation and homogeneity in some lines of work is, in fact,
critical. Standards of practice and the ordered sequencing of activities are important
in many procedures in hospitals, for example. In addition, as Stacey (2010) notes,
change can involve conflict and anxiety of the unknown. Many people do not enjoy
working in or receiving services from environments that are too dynamic. They pre-
fer greater routine and predictability in their lives.

Conclusion
This chapter has examined two broad perspectives on transformative change and
discussed their implications for community psychologists seeking to act as change
72 Per spectives on Transformative Change

agents. The perspectives differ considerably in their analysis of how transformative

change occurs. One is built on a metaphor of a system, favoring a whole-system
analysis to identify system components that can be altered to improve system func-
tioning and to ensure the achievement of system goals. The applications of systems
thinking in community psychology have favored more participatory approaches in
which system members are involved in the process of system analysis and system
change. In contrast, continuous and emergent change approaches, derived from
complex adaptive systems thinking, emphasize change that is unplanned and uncer-
tain in terms of its outcomes. This type of change is ongoing within any human
organizations. However, efforts can establish conditions for more dynamic change.
These efforts involve injecting novelty into systems, as well as promoting leadership
that creates rich and reflective conversation.
The two perspectives on transformative change are not mutually exclusive. It is
likely that periods of continuous, emergent change precede and spur a planned, epi-
sodic change strategy. In many cases, this process of continuous change can serve
as a catalyst and help to mobilize broad support for the planned change. This was
key to the approaches described by Nelson et al. (2001), Evans and Loomis (2009),
and Foster-Fishman et al. (2007b). It is also clear that there can be a planned, stra-
tegic effort to create emergent change, although the outcomes themselves cannot
be predetermined.
These observations create a number of options for community psychologists
who wish to invest in creating transformative change in CMH systems. Given the
complex, fractured, and piecemeal nature of many CMH systems, it is likely that
planned, episodic change at this level may not be an easily implemented change
strategy, particularly when community psychologists are working as external change
agents. The efforts to assemble and enlist groups in the change process may be too
daunting in most contexts. Planned change at the organizational level, however,
is more achievable, given the limited number of players and a clear organizational
hierarchy for authorizing and supporting this change. The barrier, however, may lie
in bringing organizations to the realization that there is a need for change.
In contrast, there are productive steps that can be taken in fomenting more con-
tinuous and emergent change. These steps can entail working to strengthen the
“coupling” or links among network members through the development of com-
munities of practice, networks, and collaborations. These efforts may also entail
the introduction into these groupings of novelty and innovation through the dis-
semination of new ideas, programs, or research evidence. Alternatively, they may
entail the use of less structured dialogue and inquiry to allow common interests,
observations, and goals to emerge. Through these efforts, disruption may be intro-
duced in a local system that may then precipitate an opportunity for more deliberate
whole-systems thinking and change.
CMH systems are complex, with multiple players and multiple subsystems.
Despite the various strategies at our disposal to create transformative change, it
 Perspec tive s on Trans for mative Chang e in C ommuni t y Me ntal Health 73

remains relatively rare, with far too many people with mental health challenges
being marginalized and living in poverty. This chapter has provided some orienting
concepts for guiding the further study of change efforts. It has linked common con-
cepts, practices, and research methods of community psychology to each of these
change perspectives. Future work may endeavor to fully elaborate techniques and
methods for making truly transformative change more common.

References
Annenberg Institute for School Reform. (2004). Professional learning communities:  Professional
development strategies that improve instruction. Providence, RI: Brown University.
Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health ser-
vice system in the 1990s. Psychosocial Rehabilitation Journal, 16(4), 11–23.
Bishop, P. (1998). Social change and futures practice. American Behavioral Scientist, 42, 406–412.
doi:10.1177/0002764298042003011
Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard University
Press.
Checkland, P. (1981). Systems thinking, systems practice. Chichester, UK: John Wiley & Sons.
Checkland, P. (2000). Soft systems methodology: A thirty year retrospective. Systems Research and
Behavioral Science, 17, S11–S58.
Corrigan, P. W., & Boyle, M. G. (2003). What works for mental health system change: Evolution or
revolution. Administration and Policy in Mental Health, 30, 379–395.
Dalton, J. H., Elias, M. J., & Wandersman, A. (2007). Community psychology: Linking individuals and
communities (2nd ed.). Belmont, CA: Thomson Wadsworth.
DuFour, R., & Eaker, R. (1998). Professional learning communities at work: Best practices for enhancing
student achievement. Bloomington, IN: National Education Service.
Evans, S. D., & Loomis, C. (2009). Organizational and community change. In D. Fox, I. Prilleltensky,
& S. Austin (Eds.), Critical psychology: An introduction (2nd. ed., pp. 373–390). London: Sage.
Foster-Fishman, P. G., & Behrens, T. R. (Eds.). (2007a). Systems change [Special issue]. American
Journal of Community Psychology, 39(3/4).
Foster-Fishman, P.  G., Nowell, B.,  & Yang, H. (2007b). Putting the system back into systems
change: A framework for understanding and changing organizational and community systems.
American Journal of Community Psychology, 39, 197–215. doi:10.1007/s10464-007-9109-0
Gladwell, M. (2000). The tipping point: How little things can make a big difference. New York: Little,
Brown and Company.
Granovetter, M. (1978). Threshold models of collective behaviour. American Journal of Sociology,
83(6), 1420–1443.
Health Foundation. (2010). Complex adaptive systems: Research scan. Retrieved from www.health.
org.uk/public/cms/75/76/313/2590/Complex%20adaptive%20systems%20research%20
scan.pdf?realName=zv8j6f.pdf
Hord, S. (1997). Professional learning communities: Communities of continuous inquiry and improve-
ment. Retrieved from Southwest Educational Development Laboratory www.sedl.org/pubs/
change34/plc-cha34.pdf
Kelly, J.  G. (1966). Ecological constraints on mental health services. American Psychologist, 21,
535–539.
Kuhn. T. S. (1962/1970). The structure of scientific revolutions (2nd ed.). Chicago: The University of
Chicago Press.
Lewin, K. (1951). Field theory in social science:  Selected theoretical papers. D. Cartwright (Ed.).
New York: Harper & Row.
74 Per spectives on Transformative Change

Miller, R. L., & Shinn, M. (2005). Learning from communities: Overcoming difficulties in dissemi-

nation of prevention and promotion efforts. American Journal of Community Psychology, 35,
169–185. doi:10.1007/s10464-005-3395-1
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
Nelson, G., Ochocka, J., Griffin, K., & Lord, J. (1998). “Nothing about me without me”: Participatory
action research with with self-help/mutual aid organizations for psychiatric consumer/survi-
vors. American Journal of Community Psychology, 26, 881–912.
Nelson, G., & Prilleltensky, I. (2005). Community psychology: In pursuit of liberation and well-being.
New York: Palgrave Macmillan.
Peirson, L. J., Boydell, K. M., Ferguson, H. B., & Ferris, L. E. (2011). An ecological process model
of systems change. American Journal of Community Psychology, 47, 307–321. doi:10.1007/
s10464-010-9405-y
Prilleltensky, I., & Nelson, G. (2002). Doing psychology critically: Making a difference in diverse set-
tings. London: Palgrave Macmillan.
Rowe, A., & Hogarth, A. (2005). Use of complex adaptive systems metaphor to achieve professional
and organizational change. Journal of Advanced Nursing, 51, 396–405.
Senge, P. (1990). The fifth discipline: The art and the practice of the learning organization. New York:
Doubleday.
Stacey, R. (2005). Organizational identity: The paradox of continuity and potential transformation
at the same time. Group Analysis, 38, 477–494. doi:10.1177/0533316405058540.
Stacey, R. D. (2010). Complexity and organizational reality: Uncertainty and the need to rethink man-
agement after the collapse of investment capitalism. London: Routledge.
Stacey, R. D., & Griffin, D. (2005). Introduction: Leading in a complex world. In D. Griffin & R. Stacey
(Eds.), Complexity and the experience of leading organizations (pp. 1–16). London: Routledge.
Suarez-Balcazar, Y., Redmond, L., Kouba, J., Hellwig, M., Davis, R., Martinez, L.  I.,  & Jones, L.
(2007). Introducing systems change in the schools: The case of school luncheons and vending
machines. American Journal of Community Psychology, 39, 335–345.
Trickett, E. J., & Ryerson Espino, S. L. (2004). Collaboration and social inquiry: Multiple mean-
ings of a construct and its role in creating useful and valid knowledge. American Journal of
Community Psychology, 34, 1–69.
Trochim, W. M., Cabrera, D. A., Milstein, B., Gallagher, R. S., & Leischow, S. J. (2006). Practical
challenges of systems thinking and modeling public health. American Journal of Public Health,
96(3), 538–546.
Watzlawick, P., Weakland, J., & Fish, R. (1974). Change: Principles of problem formation and problem
resolution. New York: Norton.
Weick, K. E., & Quinn, R. E. (1999). Organizational change and development. Annual Review of
Psychology, 50, 361–386.
Wenger, E. (1998). Communities of practice: Learning, meaning, and identity. Cambridge: Cambridge
University Press.
Westheimer, J. (2008). Learning among colleagues: Teacher community and the shared enterprise
of education. In M. Cochrane-Smith, S. Feiman-Nemser, & J. McIntyre (Eds.), Handbook of
research on teacher education: Enduring questions in changing contexts (3rd ed., pp. 756–783).
New York: Routledge.
 4

The Capabilities Approach to

Transformative Change in Mental Health
marybeth shinn

What should the goal of transformative change in mental health systems be? The
capabilities approach, as discussed by economist Amartya Sen (1992; 1999) and
philosopher Martha Nussbaum (2000), suggests that the goal should not be to
reduce symptoms or to promote health or even empowerment but to maximize the
real freedoms that people enjoy to live their lives as they see fit. These freedoms can
be as central as the opportunity to select goals, make plans, and carry them out, or
as seemingly small as the choice of whether or not to have a housecat. Freedoms to
live a life fully worth living, as Nussbaum puts it, are too often denied to people with
mental health problems, whose lives may be bounded by poverty and social exclu-
sion and also by housing and treatment programs that are intended to help but do
so in ways that limit the agency of participants.
In this chapter, I describe the capabilities approach and illustrate some of its
implications for the mental health system, drawing in part on examples from two
programs described in other chapters (Goering & Tsemberis, Chapter 13, this vol-
ume; Ornelas, Duarte,  & Jorge-Monteiro, Chapter  12, this volume). Enhancing
freedoms is not as simple as stating the goal to do so. Rather, seemingly simple
freedoms must often be supported by complex institutional arrangements and
resources dependent on social policies. Both exemplar programs show that trans-
forming the mental health system requires not just empowerment of consumers/
survivors but also attention to these arrangements and policies. What then should
such institutional arrangements and policies promote? The idea of “freedoms,” like
the idea of “empowerment,” can be a bit vague. Nussbaum (2000) enumerates a
list of “central human functional capabilities” or freedoms that people must enjoy
in a life worth living. I discuss her list in the context of the community psychology

75
76 Per spectives on Transformative Change

principles for a new paradigm of community mental health (CMH) enunciated by

Kloos, Ornelas, and Nelson (Chapter 2).

The Capabilities Approach

According to Sen (1992), virtually all ethical systems advocate equality of some
good. Sen argues for equality of freedom or capability. Equality in this domain
must take account of the diversity of human beings and their circumstances, so that
equality of freedoms may require inequality in provisions or supports (e.g., Sen,
1992). A  pregnant woman requires more food and vitamins to achieve adequate
nutrition than a woman who is not pregnant; a person in a wheelchair requires curb
cuts, ramps, and accessible transportation to achieve the same level of mobility as
a person who has the use of both legs. Similarly, people who have mental health
problems may need supports to achieve goals of participation in community life,
such as living in ordinary housing, working in jobs of their choosing, and exercising
other rights of citizens.
In the language of capabilities, freedoms are reflected in a capability set—the set
of desirable activities and outcomes one could realistically achieve. Sen (1992) dis-
tinguishes capabilities from functioning or what one actually achieves. With respect
to nutrition, a person who is fasting may have the same functioning as a destitute
person who is starving, but the former has a broader capability set—she could
eat, if she chose to do so. A person’s capability set depends on individual skills and
abilities or “internal capabilities” but also on external conditions—what is available
and permitted by the social context. Nussbaum (2000) sometimes calls the result
“combined capabilities” to emphasize that the concept of capabilities is inherently
a transactional one, situated in the linkage between individuals and their environ-
ments. Enhancing capabilities means enlarging the set of opportunities to which
people have real access, a task that involves transforming systems as much or more
than changing individuals. To expand capabilities, the mental health system must
partner with others (landlords, employers), and staff must work in rather different
ways than in traditional mental health programs. I illustrate with examples drawn
from each side of the Atlantic.

Institutional Resources Required to Maximize Freedoms

Pathways to Housing (Tsemberis, 2010; see also Chapter 13, this volume), which
started in New York City, offers individuals with long histories of both homelessness
and mental illness apartments of their own, with private landlords, directly from the
street, without prerequisites for sobriety or participation in treatment because this
is the type of housing consumers want (Tsemberis, Moran, Shinn, Asmussen,  &
 The Capabilitie s Ap p roach to Trans for mative Chang e in Me ntal Health 77

Shern, 2003). The program’s success in ending homelessness, compared to a tra-

ditional model in which housing is used as leverage to secure cooperation in treat-
ment, has been shown in a randomized experiment (Tsemberis, Gulcur, & Nakae,
2004). A key feature of the program is the effort to maximize choice for its tenants.
What are the institutional arrangements that support tenant choice? First,
Assertive Community Treatment Teams provide a panoply of supportive services,
with the proviso that tenants choose the services they want. In alternative mod-
els, residents sometimes earn privileges by engaging in treatment; in the Pathways
Housing First program, there are no additional privileges to be gained by engage-
ment (Tsemberis, 2010). Services are offered in the community or in tenants’
homes. Second, there are financial supports. Individuals typically receive govern-
ment disability payments. They pay a third of their income in rent, with the rest
made up by a housing subsidy, which, along with funding for social services, also
typically comes from government sources. Third, landlords must be convinced to
offer leases to people who may not at first seem to be ideal tenants. The Pathways
Housing First Program offers multiple reasons for them to do so: the program guar-
antees that the rent will be paid, stepping in to pay the tenant’s share as a loan to the
tenant if he or she stops paying and finding another tenant if the first should vacate
during the period of the lease. The housing and clinical service team is available to
support landlords whenever they have concerns about the well-being or behavior of
the tenant. And the program proactively repairs any damage tenants cause to apart-
ments (Tsemberis, 2010, pp. 62–63).
The scatter-site model adopted by the Pathways to Housing program also sup-
ports individual freedoms and community integration. Tenants are housed in indi-
vidual apartments in neighborhoods of their choosing, with no more than 20% of
the units in any given building leased to program clients. Behaviors that would be
hard to tolerate in a housing program are far more easily tolerated in this environ-
ment. For example, a client who chooses to drink would be hugely disruptive to
another client who is trying to stay clean and sober if the two shared a room or even
a hallway in a housing program. But a tenant who chooses to drink quietly in his or
her own apartment behind closed doors disrupts no one else. Scattered apartments
support tenants’ identities as citizens and are less likely to engender community
opposition than are housing programs promoting community integration.
The freedoms in housing that Pathways to Housing offers its tenants are mirrored
by freedoms in employment and education offered by the Association for Study
and Psychosocial Integration (Associação para o Estudo e Integração Psicossocial
[AEIPS]) in Lisbon (Ornelas, Duarte, & Jorge-Monteiro, Chapter 12, this volume).
I focus here on employment. Supported employment programs all too often result
in a limited set of jobs in “food, filth, and filing.” AEIPS, by contrast, places people
in varied jobs, such as auto mechanic, computer programmer, secretary, history
writer, laundry worker, paralegal, laboratory analyst, webmaster, and data analyst.
The program provides information about options and requirements for different
78 Per spectives on Transformative Change

jobs and supports individuals in “making decisions about work, about vocational
or educational alternatives, about disclosure, about services and supports they need
and who will provide them” (Ornelas, Duarte, & Jorge-Monteiro, Chapter 12, this
volume, p. x). After the individual is placed in a job, AEIPS provides ongoing indi-
vidual support meetings with the worker, evaluation meetings with the employer
to discuss any problems or obstacles and to sensitize employers and supervisors
to accept difference, weekly group meetings of workers at the Association’s center,
and monthly celebratory dinners (Ornelas, Vargas-Moniz, & Duarte, 2010). Much
as Pathways to Housing mediates between tenant and landlord, AEIPS mediates
between employee and employer, making the initial match and supporting ongoing
activities to the mutual satisfaction of both.
There are also important policy supports for both employers and employees.
The program has grants to pay people a training wage for an extended period while
they learn the skills they need at their workplace. Participants are not limited by the
repertoire of skills possessed by staff at AEIPS—they learn on the job, from their
co-workers and supervisors. The program tackles discrimination against people
who experience mental illness (Draine, Salzer, Culhane, & Hadley, 2002) indirectly.
Employers do not have to take the risk of hiring the worker before they have seen
what he or she can do. By then, the potential employee is not simply an unknown
individual with a stigmatized identity, but a flesh-and-blood person with strengths
and weaknesses, like anyone else, who has already established relationships with
co-workers. (Laws in Europe in general, and Portugal in particular, often make it
hard for employers to fire people they have hired, so a risk-free period is particularly
important.) Employers receive a tax break for hiring anyone from one of several des-
ignated categories, including individuals experiencing mental illnesses. Employees
do not risk losing medical benefits if they go to work because health care is uni-
versal. In Portugal, as in the United States, individuals who earn too much income
lose their disability benefits, but in Portugal, unlike the United States, there is a pre-
sumption that former recipients are eligible to have benefits reinstated should they
need them again ( J. Ornelas, personal communication, March, 2007). These poli-
cies create incentives for employers and reduce risk for potential employees.
As the examples of Pathways to Housing and AEIPS illustrate, fostering capabili-
ties in community settings requires careful attention to institutional arrangements
and social policies that facilitate or impede the work, both as they pertain to the
individuals experiencing mental illness and as they pertain to landlords, employers,
and other community members whose cooperation is central to success. Models
such as these can shorten the learning curve for new organizations that want to
adopt them, but the models took time to develop as the organizations learned to
leverage available policies and resources and also devised responses to particular
challenges in their local environments.
Jobs and housing—that is, “real” jobs and “ordinary” housing in the commu-
nity—are key goals denied to many people with mental health problems, so that
 The Capabilitie s Ap p roach to Trans for mative Chang e in Me ntal Health 79

freedoms to choose both, not just in principle but in reality, are important. But these
freedoms are not the only ones people desire. In designing institutions and poli-
cies that permit individuals and groups to exercise freedoms, it is useful to have a
set of freedoms to target. Nussbaum (2000) enumerates 10 “central human func-
tional capabilities” that make a life fully human. She presents the list as provisional,
having been modified by “years of cross-cultural discussion” and open to further
modification, but it represents a useful starting point for what a transformed men-
tal health system should accomplish. Nussbaum argues that the capabilities are not
interchangeable and cannot be traded off for one another. Some threshold level for
each freedom (with thresholds established by cultural circumstances) is necessary
for a life that is truly human. System administrators might evaluate their programs
against the list to consider whether their programs and institutional arrangements
fall short on any of the dimensions named.
In the next section, I  describe these capabilities as they apply to the mental
health system and examine convergences and divergences from the principles enun-
ciated by Kloos et al. (Chapter 2). Nussbaum is describing substantive freedoms,
and Kloos et al. the values that underlie transformative change; nevertheless, the
two lists have much in common. Both lists also converge with those enumerated as
“Rights and Needs” by consumers in the Comissão Nacional para a Reestruturação
dos Serviços de Saúde Mental (2007) cited by Ornelas, Duarte, and Jorge-Monteiro
(Chapter 12, this volume).

Central Human Functional Capabilities

Table 4.1 presents an abbreviated version of Nussbaum’s (2000) list of “combined”
capabilities. She begins with capabilities that might correspond to the “deficiency”
needs in Maslow’s (1962) hierarchy of needs. These are being able to live a life of
normal length; being able to have good health, with access to adequate nourish-
ment and shelter; and being able to maintain bodily integrity, including freedom to
move from place to place, being secure against assault, and having opportunities for
sexual satisfaction and choice in matters of reproduction (Nussbaum, 2000, p. 78).
These capabilities are all too often denied to people with mental illnesses, not just
historically in psychiatric hospitals but in today’s hospitals, housing and treatment
programs, adult homes, and outpatient commitment arrangements.
Psychiatric diagnoses are associated with foreshortened lives. Clients of pub-
lic mental health systems have mortality rates that are more than twice as high as
other residents of their states of the same age and gender. Across 18 one-year peri-
ods spread over seven states, public mental health clients who died lost a median of
26.8 years of potential life compared to the life expectancy of their age and gender
peers in the general population (Colton  & Manderscheid, 2006). This increased
mortality is likely due both to the iatrogenic effects of psychiatric treatment and to
80 Per spectives on Transformative Change

Table 4.1  Central Human Functional Capabilities (abbreviated from

Nussbaum, 2000, pp. 78–80)
1. Life
2. Bodily Health
3. Bodily Integrity
4. Senses, Imagination, and Thought
5. Emotions
6. Practical Reason
7. Affiliation:
A. Living with and toward others
B. Having the social bases of self-respect and nonhumiliation
8. Other Species
9. Play
10. Control Over One’s Environment
A. Political
B. Material

poverty. Psychotropic drugs have been associated with increased rates of metabolic
syndrome, which in turn leads to cardiovascular disease, cerebrovascular disease,
and type 2 diabetes (Newcomer, 2007). Disability benefits keep individuals who
receive them well below the poverty line, and poverty is associated with poor health
and nutrition.
To address health issues and in response to an organizational evaluation by con-
sumers, AEIPS has recently adopted a wellness program that focuses on enlarging
options for physical activities in the community, developing workshops on nutri-
tion, and restricting smoking in the organization. Both professionals and consum-
ers are engaged in “linking, accessing, and opening community resources to people
with mental health problems” (Ornelas, Duarte, & Jorge-Monteiro, Chapter 12, this
volume, p. 271).
Poverty is also associated with access to housing. In the United States in 2010,
the monthly rent for a studio or efficiency apartment cost, on average, 99% of
received federal Supplemental Security Income (SSI) plus any state supplement,
with the housing priced at the fair market rent determined by the Department of
Housing and Urban Development (Cooper, O’Hara, & Zovistoski, 2011). Not sur-
prisingly, individuals with experience of mental illnesses are more likely than others
to become homeless (Burt et al., 1999). Even when they remain housed, they have
little income left for other needs. Sen (1992; 1999) considers poverty a gross depri-
vation of capabilities, and it is certainly associated with difficulties in maintaining
 The Capabilitie s Ap p roach to Trans for mative Chang e in Me ntal Health 81

adequate shelter and nutrition. Pathways to Housing has long seen housing in the
community for individuals who have experienced homelessness and mental illness
as the foundation for addressing all other goals, and AEIPS has recently adopted a
Casas Primeiro program, following the Pathways model in Lisboa.
Bodily integrity is also far from assured for individuals who experience mental ill-
nesses. Many people who identify as “survivors” of psychiatric treatment have been
subjected to forced hospitalization and medication. Legislation, such as Kendra’s
law in New York State, provides that courts can order involuntary outpatient treat-
ment and medication for individuals under legally specified circumstances with a
penalty of psychiatric hospitalization for noncompliance (New  York State Office
of Mental Health, 2006). In the same city where Pathways to Housing originated,
thousands of individuals with mental illnesses are warehoused in adult homes that a
federal judge deemed little more than institutions. Worse, scores of these residents
were subjected to unnecessary eye surgery in a scam to generate Medicare and
Medicaid payments (Levy, 2002). Many institutional and community-based hous-
ing programs seem to assume that their clients are asexual and restrict guests or the
privacy needed to allow for sexual freedom. By contrast, the Pathways to Housing
program keeps a bowl of condoms on the receptionist’s desk, underscoring the fact
that people with mental illnesses have the same sexual desires as everyone else and
the same needs to protect themselves from HIV or unwanted pregnancy (Sikkema,
Meade, Doughty-Berry, Zimmerman, Kloos, & Snow, 2007).
Nussbaum’s capabilities of life, health, and bodily integrity are compatible with
Kloos et  al.’s (Chapter  2) principles of promotion of health and well-being, pro-
motion of social justice, and individual liberation, and the latter authors include
compulsory treatment, poverty, and lack of housing as barriers to recovery in their
discussion of the need for a multilevel ecological approach. The difference here is
one of emphasis and specificity. Nussbaum draws attention to just what is involved
in fostering life, health, and bodily integrity. The values of community psychology
focus on strengths rather than deficits, so it is perhaps worth stating that the capabil-
ities approach does not focus on deficits in individuals but on deficits in freedoms
afforded to individuals by societal arrangements, including here both the mental
health system and broader social policies related to income and housing.
Salzer and Baron (Chapter 11, this volume), whose chapter on community inte-
gration arrives at similar conclusions by a different route than this chapter, raise
the “conundrum” of whether community integration promises a reasonably good
life or only the opportunity to pursue it. Nussbaum (2000) would answer that
governments cannot guarantee what Rawls (1971) calls “natural goods,” such as
health—luck and natural endowments play a role. The role of the mental health
system should be “to deliver the social basis of these capabilities” and to “make up
for differences in starting point that are caused by natural endowment or by power”
(Nussbaum, 2000, p. 81). Disability payments set at a level that keeps people mired
in poverty do not make up the difference.
82 Per spectives on Transformative Change

I skip next to Nussbaum’s capabilities of practical reason and affiliation, which

“stand out as of special importance, since they both organize and suffuse all of the
others” (Nussbaum, 2000, p. 82). The capabilities approach sees “the human being
as a dignified free being who shapes his or her own life in cooperation and reciproc-
ity with others” (p. 72). Practical reason includes the critical reflection and planning
of one’s life. Engagement in meaningful social roles, mentioned repeatedly by Kloos
et al., falls here. This capability comes closest to the individual aspect of empow-
erment, “the ability to make decisions that control your life, access to resources,
and the ability to take action to realize your goals” (Kloos et al., Chapter 2, p. 34)
and to the idea of freedom of choice in their principle of collaboration. Kloos et al.
(Chapter 2) note that individuals in the mental health system are often taught to see
themselves as incapable of making decisions but begin in the journey of recovery to
set goals, make decisions, and take both risks and responsibility for their lives. In
Nussbaum’s language, they are then exercising practical reason.
Similarly, Nussbaum describes the natural human tendency to circumscribe
one’s goals to what one deems possible. The tendency is often adaptive, helping to
maintain emotional equilibrium, but it also leads people to give up on what “human
beings have a right to have” (Nussbaum, 2000, p. 138). Following Maslow’s idea
that needs follow a hierarchy, it may be necessary for people to have some level
of life, health, and bodily integrity before they can think about broader goals. In a
series of qualitative interviews, Barr (2004, p. 160) found that goals reported by 20
formerly homeless tenants in the Pathways to Housing project who had moved into
apartments of their own included work, education, and creative activities such as
painting or writing poetry. By contrast, 19 of 20 participants in the control group,
whether in housing programs, still in shelters, or on the street, had just one goal, “to
get an apartment of their own.”
Nussbaum delineates two aspects of affiliation. The first, living with and toward
others—engaging in various forms of social interaction, with explicit attention to
those institutions that nourish and protect both affiliation and freedoms of assem-
bly and speech (Nussbaum, 2000, p. 79)—corresponds to Kloos et al.’s (Chapter 2)
principle of social inclusion and community integration. The second, “having the
social bases of self-respect and non-humiliation” includes not only nondiscrimina-
tion, but also being “treated as a dignified being whose worth is equal to that of
others” (Nussbaum, 2000, p. 79). Nussbaum’s focus on self-worth not as in internal
construct but as one that derives from social arrangements is highly consistent with
community psychology. Kloos et al. (Chapter 2) touch on these ideas in the discus-
sions of valued social roles under the principles of social inclusion and community
integration and of strengths, opportunities, and resources, and they discuss stigma
in sections covering several additional principles.
Nussbaum’s tenth capability, of being able to exercise control over one’s environ-
ment, is also highly compatible with the community psychology principles enumer-
ated by Kloos et al. Political participation equates closely with the collective aspects
 The Capabilitie s Ap p roach to Trans for mative Chang e in Me ntal Health 83

of empowerment, and the ability to possess property is an important element of

individual empowerment.
The remaining four capabilities in Nussbaum’s list have less resonance with
community psychology principles. The capability of senses, imagination, and
thought encompasses being able to think and reason, exercise imagination and
self-expression, search for the meaning of life, and have these activities fostered
by an adequate education and freedoms of expression and religious exercise. The
capability of emotions includes both being able to experience a full range of emo-
tions and not having emotional development blighted by trauma, fear, or neglect
(Nussbaum, pp. 78–79). Kloos et al. (Chapter 2) note that “the recovery process
involves a cognitive, emotional, spiritual, and physical change” that social contexts
must foster, but the particular ends seem secondary to the idea that settings support
individual development in a multilevel process. The capabilities of play and other
species, that is, “being able to live with concern for and in relation to animals, plants,
and the world of nature” (Nussbaum, 2000, p. 80) have no parallel in the community
psychology principles; however, “healthy activities and communing with nature” is
the tenth item on the list of rights and needs developed by Portuguese consum-
ers in the Comissão Nacional para a Reestruturação dos Serviços de Saúde Mental
(2007) cited by Ornelas, Duarte, and Jorge-Monteiro (Chapter 12, this volume).
The overwhelming importance of these issues for some people underscores
Nussbaum’s argument that some minimal level of each freedom is necessary for a
life that is fully human. Before entering Pathways to Housing, a tenant had previ-
ously declined offers of housing programs that would not allow pets. She was so
attached to her cat that she preferred to sleep in a stairwell of an apartment building
where a friend would keep the cat. After the friend’s husband left in the morning,
the woman was allowed to come indoors, shower, and visit with her cat. The woman
was exercising practical reason and choosing a life that allowed her to maintain an
important connection to other species, but at considerable cost.

Why the Capabilities Approach Is Helpful

The capabilities approach is clearly compatible with the community psychol-
ogy principles for transformative change in CMH as enunciated by Kloos et  al.
(Chapter 2). Does it add value? Whereas Kloos et al. focus on foundational prin-
ciples for a new mental health paradigm, the capabilities approach focuses on
ends: what a transformed system should secure to its participants. Thus, an issue
such as reducing stigma, which is an exemplar of multiple principles, is a central
focus of one aspect of the capability of affiliation, namely, “the social bases of
self-respect and non-humiliation.”
The capabilities approach provides more than a reorganization of ideas in the
foundational principles. It focuses not only on empowerment, but also on the
84 Per spectives on Transformative Change

material conditions that permit people to live fuller lives, bridging “material and
social registers of disadvantage” (Hopper, 2007). Enumerating ends such as hav-
ing a normal human lifespan focuses attention on the grave injustice of disparities
in mortality and health among people who are and are not clients of public men-
tal health systems, disparities that are not necessarily combated by empowerment.
The capabilities approach also draws attention to issues, some of them apparently
mundane, such as the freedom to have a pet, which might be overlooked in sys-
tems change that combats oppression and promotes liberation and collaboration.
Thus, the focus on ends provides important substantive content that complements
the community psychology principles for transformative change. (The community
psychology principles suggest more about how such change might come about and
attend in particular to issues of power, oppression, and liberation that are consistent
with but less explicit in Nussbaum’s and Sen’s work.)
A capabilities approach can contribute to both transformational and ameliorative
change. I agree with Nelson, Kloos, and Ornelas (Chapter 1) that we should strive
for transformational change. Some capabilities, such as practical reason and control
over the environment, can be fully secured in no other way. Nelson et al. (Chapter
1) are certainly persuasive that transformative change, at least in the sense of creat-
ing exemplars, can be accomplished without ameliorative change. Where transfor-
mative programs show the way, others often follow, although programs are faster to
adopt labels such as “Housing First” than the underlying principles that challenge
existing approaches, such as fostering choice over all aspects of life. Specifications
of the freedoms that the transformative programs secure to their participants might
help to reduce backsliding in the dissemination process. It seems likely that, without
transformative change, scandals such as those involving adult homes in New York
will continue to erupt.
It also seems clear that some gross deprivations of capabilities can be
addressed with incremental, ameliorative reform. For example, a federal judge
ordered New York State to develop 1,500 units per year of supported housing in
the community for people previously warehoused in adult homes (Sulzberger,
2010), and courts in California have ruled that Fair Housing Law requires land-
lords to relax policies against pets to permit service animals, including animals
that provide emotional support to people with mental disabilities (Arusha,
2004). In these cases, ameliorative change may reduce resistance to broader
transformative change. Community psychologists may well want to invest their
energies in transformative change but not ignore potential allies who make dif-
ferent choices.
The capabilities approach grew out of developmental economics (Sen, 1992;
1999)  and philosophy (Nussbaum, 2000)  and draws its examples from the situ-
ation of developing nations and most particularly of the women in those nations,
whose freedoms are sorely abridged. Yet it is remarkable how well it also fits the cir-
cumstances of mental health systems and their clients in Western nations. A central
 The Capabilitie s Ap p roach to Trans for mative Chang e in Me ntal Health 85

contribution of the capabilities approach is the clear statement that creating equal-
ity in the domain of freedoms requires additional supports for people who face spe-
cial challenges, such as those posed by mental illnesses, and that the goal of those
supports must be the enhancement of freedoms. In the case of Pathways to Housing
and AEIPS, I have outlined some of the institutional arrangements and social poli-
cies that help to provide the social bases of capabilities for people experiencing
mental health problems in the domains of housing and work. Securing all the free-
doms Sen and Nussbaum advocate would surely lead to transformative change in
mental health systems.

Acknowledgments
This chapter was supported in part by National Institute of Mental Health Grant
P20 MH078188 to the Center to Study Recovery in Social Contexts, Nathan Kline
Institute.

References
Arusha, K. (2004). Disabilities law: Accommodating tenants with disabilities. California Lawyer.
Retrieved from www.callawyer.com/cleStory.cfm?eid=631028&evid=1&qVersionID=128&
qTypeID=7
Barr, A. (2004). Evaluation research: A qualitative evaluation of a supported housing program for
homeless persons with severe mental illnesses. In D. K. Padgett (Ed.), The qualitative research
experience (pp. 152–161). Thousand Oaks, CA: Sage Publications.
Burt, M. L., The Urban Institute, Aron, L. Y., Douglas, T., Valente, J., Lee, E., & Iwen, B. (1999).
Homelessness: Programs and the people they serve: Findings of the National Survey of Homelessness
Assistance Providers and Clients:  Interagency Council on Homelessness.Washington D.C.:  The
Urban Institute.
Colton, C.  W.,  & Manderscheid, R.  W. (2006). Congruencies in increased mortality rates, years
of potential life lost, and causes of death among public mental health clients in eight states.
Preventing Chronic Disease [Serial online], 3(2), 1–14. Retrieved fromwww.cdc.gov/pcd/
issues/2006/apr/05_0180.htm
Cooper, E., O’Hara, A., & Zovistoski, A. (2011). 2010 priced out: The housing crisis for people with
disabilities. Boston: The Technical Assistance Collaborative.
Draine, J., Salzer, M., Culhane, D., & Hadley, T. (2002). Poverty, social problems, and serious mental
illness. Psychiatric Services, 53(7), 899.
Hopper, K. (2007). Rethinking social recovery in schizophrenia:  What a capabilities approach
might offer. Social Science & Medicine, 65, 868–879.
Levy, C.  J. (2002, April 30). Voiceless, defenseless, and a source of cash. The New  York Times.
Retrieved from www.nytimes.com/2002/04/30/nyregion/voiceless-defenseless-and-a-source-
of-cash.html
Maslow, A. (1962). Toward a psychology of being. New York: Van Nostrand.
New York State Office of Mental Health. (2006). An explanation of Kendra’s law Retrieved July 3,
2010, from www.omh.state.ny.us/omhweb/kendra_web/Ksummary.htm
Newcomer, J. W. (2007). Metabolic syndrome and mental illness. The American Journal of Managed
Care, 13(7), S170–S177.
86 Per spectives on Transformative Change

Nussbaum, M.  C. (2000). Women and human development:  The capabilities approach.
Cambridge: Cambridge University Press.
Ornelas, J., Vargas-Moniz, M.,  & Duarte, T. (2010). Community psychology and social change:
A story from the field of mental health in Portugal. Global Journal of Community Psychology
Practice, 1(1), 21–31. Retrieved from www.gjcpp.org/pdfs/2009-0013%20Final%20
Copy-010710.pdf
Rawls, J. (1971). A theory of justice. Cambridge, MA: Harvard University Press.
Sen, A. K. (1992). Inequality reexamined. Oxford, UK: Clarendon Press.
Sen, A. K. (1999). Development as freedom. New York: Knopf.
Sikkema, K, J., Meade, C.  S., Doughty-Berry, J.  D., Zimmerman, S.  O., Kloos, B.,  & Snow, D.  L.
(2007). Community-level HIV prevention for persons with severe mental illness living in sup-
portive housing programs: A pilot intervention study. Journal of Prevention and Intervention in
the Community, 33(1/2), 121–135.
Sulzberger, A. G. (2010, March 1). Judge orders New York to move mentally ill out of large, insti-
tutional housing. The New  York Times. Retrieved from www.nytimes.com/2010/03/02/
nyregion/02mental.html?scp=3&sq=Garaufis+and+%22adult+home%22&st=nyt
Tsemberis, S. (2010). Housing first: The pathways model to end homelessnes for people with mental ill-
ness and addiction. Center City, MN: Hazelden.
Tsemberis, S., Gulcur, L., & Nakae, M. (2004). Housing first, consumer choice, and harm reduc-
tion for homeless individuals with a dual diagnosis. American Journal of Public Health, 94(4),
651–656.
Tsemberis, S. J., Moran, L., Shinn, M., Asmussen, S. M., & Shern, D. L. (2003). Consumer prefer-
ence programs for individuals who are homeless and have psychiatric disabilities: A drop-in
center and a supported housing program. American Journal of Community Psychology, 32(3–4),
305–317.
 PA RT T H R E E

TRANSFORMATIVE CHANGE
AND CONSUMER PARTICIPATION
 5

Transforming Mental Health Care

Through the Participation
of the Recovery Community
l arry davidson, priscill a ridgway, maria o’connell ,
and thomas a . kirk , jr .

Revolutions begin when people who are defined as problems achieve the
power to redefine the problem.
—John McKnight (1992)

Through examination of a case example of transformational change at the level of

a state mental health and addiction authority, this chapter addresses a key com-
ponent of the efforts currently under way to transform mental health care across
North America and elsewhere. This component involves people with a history of
serious mental illness participating in various roles and capacities in system change
efforts. Although the participation of people in recovery has been well-documented
in self-help/mutual support groups, consumer-run programs, and, increasingly, in
peer support roles within the mental health system, less attention has been given
to people in recovery taking up roles such as advisory/oversight board members,
quality improvement evaluators, workforce development trainers, and commu-
nity educators (e.g., Davidson, Ridgway, Wieland, & O’Connell, 2009a; Telford &
Faulkner, 2004).
Occupying such roles within the leadership structure working to transform sys-
tems of care is different from the traditional advocacy role many people in recovery
played as part of the consumer/survivor movement. From its inception, this move-
ment approached the mental health system from the “outside,” offering alternatives
to mental health programs and advocating for changes in mental health legislation
and policy (e.g., Grant, 2007; Ruttera, Manley, Weaver, Crawford, & Fulop, 2004).

89
90 Transformative Change & Consumer Participation

With the spawning of the recovery movement as one result of these advocacy
efforts, people in recovery are now taking up positions as agents of change inside as
well as outside of mental health systems. This chapter describes strategies for involv-
ing people in recovery and family members in a range of “insider” positions and
explores some of the impacts that these strategies have had. The activities described
in this chapter are based in the authors’ experiences co-leading a public/academic
partnership that assisted in the transformation of the statewide system of care for
persons with mental health and substance use disorders in Connecticut.
The transformation efforts described here began in 1999 and continue to this day,
with much work remaining to be done. One of the ways in which the US President’s
New Freedom Commission on Mental Health described a transformed system is that it
is “consumer and family driven” (Department of Health and Human Services [DHHS],
2003, p. 8). The ongoing transformation efforts in our state derived their inspiration
from the definition of revolutions offered by McKnight in the epigraph and from the
related conviction that the only way to develop a “consumer- and family-driven” sys-
tem of care was for consumers and family members to drive the transformation process
itself. As a result of this conviction, the strategies described here embody several of the
key principles of community psychology discussed in the introductory chapters of this
book; namely, the principles of individual and collective empowerment, power, collab-
oration, multilevel ecological approach, and evaluating progress in terms of changes in
systems and individual lives. In fact, all of the strategies described in this chapter could
be viewed as having in common the basic aim of evaluating and improving the perfor-
mance of the mental health system by making it directly accountable to the people (i.e.,
consumers and families) it was designed to serve.
How can a consumer- and family-driven system be achieved? First, by asking
the recovery community—that advocacy community made up of persons in recov-
ery from mental health and/or substance use disorders and their loved ones—what
kind of system they want and need. Second, by involving the recovery community in
developing, implementing, and overseeing a strategic plan for transforming the exist-
ing system into the one they envision. Third, by involving the recovery community in
evaluating the strengths of the existing system and identifying the areas in which the
most work is needed to achieve this vision. And, fourth, by involving the recovery com-
munity in making the needed changes, including (re-)training the behavioral health
workforce and educating the public. Due to space limitations, we describe briefly each
of these first three components; for an account of the broader initiative, readers are
referred to Davidson, Kirk, Rockholz, Tondora, O’Connell, and Evans (2007).

Setting the Agenda for Change

This case study focuses on one decade in the life of one statewide system of care.
A system of care is a collective of agencies that provide mental health services to a
 Par ticipation o f the R ec ove r y C ommuni t y 91

designated geographic area and that is led by a central organization that combines
administrative, fiscal, and clinical responsibility for the target population. The aim
of this mechanism is to consolidate mental health funding streams so that scarce
resources can be efficiently and flexibly deployed to meet the changing needs of the
people being served. The consolidation of funding also enables the central organi-
zation to ensure coordination and collaboration among the various service units.
A final benefit of managing a system of care is that stakeholder input can be used
in the design of services that are responsive to local needs and priorities, and stake-
holders can ensure local accountability for the ways in which funds are used and
outcomes are achieved (Hoge, Davidson, Griffith, Sledge, & Howenstine, 1994).
A major challenge for such systems of care that are attempting to become con-
sumer and family driven is that they have become accustomed to viewing consumers
and family members primarily as passive recipients of services rather than as active
change agents or leaders. This perception of passivity is best understood as a histori-
cal legacy, however, rather than as a necessary state of affairs. In fact, when systems
of care were first conceptualized as part of the Community Support Movement of
the 1970s, explicit emphasis was placed on the involvement of all stakeholders in
their design and governance, including persons with mental illnesses and their fam-
ily members (Turner & Tenhoor, 1978). When this degree of involvement did not
occur of its own accord, consumer and family advocates then lobbied the US gov-
ernment to pass Public Law 99-660 in 1990 to require publicly funded systems to
afford consumers and family members substantive roles in service development,
monitoring, and management (Chamberlin & Rogers, 1990). Little progress was
made during the 1990s, however, because most system leaders continued to view
persons in recovery and their loved ones as either uninterested in and/or incapable
of taking on such roles (Davidson, Ridgway, Wieland, & O’Connell, 2009b).
If consumers and family members had yet to assume substantive roles in sys-
tem governance in the 20 years since the inception of the Community Support
Movement, what will it take for this change to occur? How can a traditional sys-
tem break or abandon such long-standing habits, attitudes, and perceptions to
make it possible for consumers and family members to take the wheel and drive
the system? Although efforts are required to stimulate and sustain culture change
both for system administrators and for the recovery community itself, our experi-
ence in Connecticut suggests that such efforts can be stimulated with the simple
issuance of an invitation. In other words, if you want persons in recovery and their
loved ones to play a role in a system of care, the first thing you have to do is ask
them into the room.
In the case of Connecticut, this invitation was issued by a newly appointed
Commissioner of Mental Health and Addiction Services (TAK) to two state-
wide advocacy organizations run by people in recovery. The invitation was on the
order of: “Please get together and agree on a vision of what you would like our sys-
tem of care to look like in the future. We will then adopt that vision to guide our
92 Transformative Change & Consumer Participation

transformation efforts, which we will partner with you in pursuing.” Because each
of these advocacy organizations represented a different constituency at the time,
bringing them together for this joint task was neither easy nor straightforward.
Even within the recovery community itself, old habits, attitudes, and perceptions
die hard; the mental health recovery community was suspicious of the agenda of
the addiction recovery community (and vice versa), with each group assuming the
other would not share the essential components of their vision for change. Gentle
prodding and persistence by the commissioner, however, along with the use of the
carrot of a meaningful role in system transformation, brought the two sides together
over a matter of months. The drafting and redrafting of their respective platforms,
joint meetings to develop consensus and negotiate compromises, and regular meet-
ings with the commissioner led the advocacy organizations to endorse a common
set of guiding values and principles for a transformed system that is displayed in
Table 5.1.
The concepts listed in Table 5.1 represented the first fruits of the kind of “revo-
lution” to which McKnight referred. They are the characteristics of a transformed
system that the people (who had formerly been defined as “the problems” that
the system had to care for and deal with) were able to identify and articulate in
depth when offered the opportunity to redefine the problem in their own terms.
What remained to be done, of course, was to bring the system of care into align-
ment with these well-articulated values and principles. To promote this agenda,
the commissioner and system leadership then drafted and adopted a series of poli-
cies on recovery-oriented care, cultural competence, and person-centered recovery
planning that were shaped substantially by the input of recovery community repre-
sentatives. Statewide and regional training sessions were then provided to educate
practitioners, agency directors, and consumers and families about the implementa-
tion of these policy initiatives, with most sessions involving people in recovery as
co-trainers (Davidson et al., 2007).
Using a combination of didactic instruction and experiential exercises, the
Recovery Institute that was developed offered training at three levels and on a variety
of specific topics. The three levels were: (a) regional “open” trainings that introduced
the new policies and provided basic education about recovery, recovery-oriented
care, cultural competence, and person-centered care; (b) intensive trainings in spe-
cific topic areas (described later); and (c) technical assistance and on-site training
for staff involved in developing model programs in each of the topic areas identified.
The topic areas included outreach and engagement, motivation-based care, core
clinical and rehabilitative skills, functioning as a recovery guide, person-centered
care planning and self-determination, supported community living, diversity and
cultural competence, developing peer-run programs, peer support, and supervision
of peer staff. Intensive seminars were offered in each of these topics, and two agen-
cies were selected to develop model programs that demonstrated expertise in each
 Par ticipation o f the R ec ove r y C ommuni t y 93

Table 5.1  Core Values and Principles for Transformation

Direction
Equal opportunity for wellness
Recovery encompasses all phases of care
Entire system to support recovery
Consumer input at every level
Recovery-based outcome measures
New nomenclature of recovery
System-wide training for culturally diverse, relevant, and competent services
Consumers review funding
Commitment to peer support and to consumer-operated services
Consumer participation on boards, committees, and other decision-making
bodies
Financial support for consumer involvement
Participation
No wrong door
Entry at any time
Choice is respected
Right to participate
Person defines goals
Programming
Individually tailored care
Culturally competent care
Staff know resources
Funding
No outcomes, no income
Person selects provider
Protection from undue influence
Providers don’t oversee themselves
Providers compete for business

From Davidson et al., 2007.

of these approaches. These agencies served as incubators for new practices and also
as “Centers of Excellence” to which staff from other agencies could come to learn
first-hand how to practice in these new ways. As part of the public/academic part-
nership, most trainings and seminars were co-led by faculty from the Yale Program
for Recovery and Community Health (PRCH) and practitioners and persons in
recovery from community agencies.
94 Transformative Change & Consumer Participation

Education and
Recovery Institute Public Education
Training

Service Vocational Peer-Directed

Housing Supports
Enhancement Services Services

Control and Person Centered Advance Olmstead Flexible Service

Participation Recovery Plan Directives Initiatives Funding

Policy Advisory Advocacy Recovery

Workgroup Council Community Assessment
Laying the
Foundation
Commissioner’s Policy Statement

Figure 5.1  Building blocks of Connecticut system transformation.

There were, of course, many additional components to these early system trans-
formation efforts. Figure 5.1 depicts these components as building blocks, with
each successive layer being based on the success of its predecessors. As is evident
in Figure 5.1, transformation required a multipronged approach, ranging from the
basic policy changes and educational offerings described earlier to assessing the
recovery orientation of the system and allocating resources to expanding capac-
ity in existing programs (e.g., supported housing and supported employment) and
developing new ones (e.g., advance directives, peer support, and flexible funding
for facilitating hospital discharges). Of primary concern for this chapter is the box
in Figure 5.1 labeled “advocacy community,” which includes all of the activities to
be described in the following sections.

Planning and Oversight

Based in part on these initial efforts, the state applied for and was awarded one of
several “mental health transformation” incentive grants offered by the federal gov-
ernment to assist states in making changes in their system’s infrastructure needed
to support recovery-oriented care. A  key question in implementing the award
was what roles would be played by consumers and family members in the state’s
transformation efforts. Different states handled this challenge in different ways. In
Connecticut, in part based on the precedent the commissioner had set at the incep-
tion of the transformation process and in part due to the significant presence of
consumers in the Transformation Executive Group itself, this governing body made
 Par ticipation o f the R ec ove r y C ommuni t y 95

the decision to extend the invitation for consumer and family member leadership to
all aspects and at all levels of the transformation initiative, consistent with the dis-
ability rights slogan of “Nothing About Us, Without Us.”
As a result, in addition to there being consumers on the Executive Committee,
there were consumer and family member representatives on the oversight com-
mittee; the larger, multiagency committee and all of its various subcommittees;
and on each of the project-specific work groups. Stipends were made avail-
able to support ongoing consumer and family member participation. When
Requests for Proposals were issued to fund specific projects with grant monies,
decision-making review committees were assembled that had a majority of con-
sumers and family members, thus ensuring that resource allocation decisions
were made in a collaborative way in which the recovery community had a major-
ity voice. Finally, a Consumer, Youth, and Family Advisory Council (CYFAC)
was convened to afford the recovery community the opportunity to formulate its
own agenda apart from practitioners, in order to exert influence more indepen-
dently and evolve a collective voice. The organizational chart for this manage-
ment structure is presented in Figure 5.2, showing the numerous ways in which
consumer, youth, and family involvement was considered a priority. In addition
to having recovery community members in all of the management structures and
all of the workgroups, increasing the involvement of consumers, youth, and fam-
ily members statewide was the aim of one of the four major workgroups, as well
as one of the functions of the CYFAC.

Executive
Committee*

Multiagency Oversight Committee*

Workforce Development*

Community Education*
Consumer,
Youth, & Family
Advisory
Consumer, Youth, & Family Involvement* Council*

Data Driven Decision Making*

*Consumers, youth, and family members are included

Figure 5.2  Organizational chart for transformation grant.

96 Transformative Change & Consumer Participation

Once convened, the CYFAC was quick to identify and embrace the New
Freedom Commission’s emphasis on people in recovery and family members being
the primary authors and decision makers (DHHS, 2003) of the policies that affect
the design, delivery, and evaluation of the mental health services they receive. The
CYFAC endorsed this vision of the central role of consumers and family members
and took it upon itself to determine the ways in which they would provide leader-
ship in the transformation efforts. They decided on a two-pronged agenda: (a) to
infuse the transformation planning, decision-making, resource allocation, and
related processes with the perspectives of consumers, youth, and family members;
and (b) to develop projects to enhance consumer, youth, and family involvement
across the state. In other words, the CYFAC decided not only to take ownership of
the transformation grant, but also to use the opportunity of the grant to enhance
consumer and family leadership throughout all other activities undertaken in the
state, regardless of their direct or indirect relation with grant funds. To exert its
autonomy, the CYFAC developed the following list of ways in which it would be
involved in transformative and nontransformative activities.
The CYFAC will:

(a) Decide on its own composition, including who is represented, how, and through
what mechanisms
(b) Develop its own role within the broader transformation process, including the
process by which its input will be solicited, received, and incorporated into
transformation activities. Examples of such roles included:
• Working collaboratively with the Transformation Executive Committee to
develop an initial project management plan and timeline and meeting with
this Committee on a regular basis to review progress, provide feedback, and
discuss emerging issues
• Working with the Transformation Executive Committee on establishing a
formal advisory group that endures beyond the transformation grant
• To facilitate ease of understanding, insisting that subcommittees and trans-
formation staff communicate their ideas in language and terms that are
understandable to members of the Advisory Council rather than requiring
members of the Advisory Council to adopt professional language (e.g., mini-
mize the use of acronyms and professional jargon)
• When needed, designating consumer, youth, and/or family representatives to
all workgroups and subcommittees involved in transformation

As the CYFAC became increasingly active in transformation efforts, questions

emerged among other stakeholders regarding the growing influence of this group.
Time was devoted to discussing how different stakeholders understood the con-
cept of “consumer- and family-driven” care and what the CYFAC meant by view-
ing themselves as “the primary authors and decision makers” in the transformation
 Par ticipation o f the R ec ove r y C ommuni t y 97

process. Following these at times heated discussions, the CYFAC decided that it
was important to characterize the nature of the relationship between stakeholders in
positive and inclusive terms that emphasized their commitment to common goals.
Their precise language was: “This partnership will be one of shared decision-making
in which each party respects and values the contributions, perspectives, and roles
of the other, with full understanding that the promotion of resilience and recovery
requires the collective efforts of all parties.” This framing of the nature of the rela-
tionship was affirmed by all parties and set the stage for further advances in con-
sumer and family member involvement.
Many of these efforts were captured as objectives identified through the CYFAC’s
strategic planning process, the results of which are presented in Table 5.2. Of these
goals and objectives, the one that is most worthy of note for present purposes is
Goal 3. To establish and maintain systemwide accountability to consumers, youth,
and families, the CYFAC would function as the primary collective, reviewing and
using the findings from a consumer, youth, and family–directed quality improve-
ment collaborative to identify priority areas for making changes and to promote
two-way communication between systems and consumers, youth, and families to
ensure that the changes made are achieving the desired ends. We turn to the work of
this quality improvement collaborative next.

Assessing and Improving Quality of Care

In response to a Request for Proposals issued by the state’s transformation lead-
ership, all of the consumer, youth, and family advocacy organizations in the state
agreed to band together and combine their efforts to develop and support the oper-
ation of a consumer, youth, and family–run quality improvement collaborative. In
the past, it had been customary for these various organizations to compete with one
another for limited state funds. In this case, however, they were encouraged to work
together to develop one proposal, which resulted in the formal signing of a mem-
orandum of agreement (MOA) that specified the respective role of each partner
organization. Following the signing of this MOA, a number of public events were
held to educate stakeholders about the project and to elicit interest from consumers,
youth, and family members in becoming involved in assessing and improving the
quality of care provided by the public mental health system. People in recovery and
their family members responded avidly to these opportunities, and two such meet-
ings were attended by more than 500 people. An application process was put into
place, and an initial group of 60 people were chosen from all of those who applied
to form a Central Coordinating Council (the Council) for what came to be called
the Quality Improvement Collaborative (QUIC). The Council was to be entirely
CYF-run and staffed, reporting only to the steering committee made up of represen-
tatives of the eight participating advocacy organizations and representing a balance
98 Transformative Change & Consumer Participation

Table 5.2  Goals and Objectives of the Consumer, Youth, and Family Advisory
Council (CYFAC)
Goal 1: Ensure that consumers, youth, and families become the primary authors and
decision makers in developing policies affecting the design, delivery, and evaluation
of mental health services in the state.
Objective 1. Establish relationships, memoranda of understanding, and a network with
and among consumer, youth, and family organizations in the state.
Objective 2. Embed the consumer, youth, and family voice throughout all of the policy
development, system decision-making, and transformational efforts being carried out
across systems and state agencies.
Objective 3. Ensure that vacant seats for consumers, youth, and family members on
boards, committees, and other decision-making bodies are filled by interested parties
and that, where there is an absence of such seats, they are created.
Goal 2: Clarify, unify, and strengthen the consumer, youth, and family voice; expand
the influence of our advisory function; and attract new partners to our cause.
Objective 1. Establish working relationships with leadership of state agency
transformation partners to effect policy and resource allocation through the
development and coordination of ongoing recovery education.
Objective 2. Ensure that peer-led education and supports for consumers, youth, and
families are valued as critical system components.
Objective 3. Obtain training and leadership development support for the CYFAC
and other consumer, youth, and family leadership to infuse systems with consumer,
youth, and family values.
Goal 3: Develop, implement, and maintain mechanisms to ensure systemwide
accountability on behalf of consumers, youth, and families.
Objective 1. Achieve recognition of the CYFAC as the collective body to influence
decision making across the system to be responsive to the identified and expressed
needs, values, and preferences of consumers, youth, and families across the state and
across the lifespan.
Objective 2. Review and use the findings of the CYF Quality Improvement
Collaborative and needs assessments and quality improvement activities carried
out by other consumer, youth, and family organizations to identify priority areas for
which to hold the system accountable.
Objective 3. Create and utilize feedback loops to ensure two-way communication
between systems and individuals to ensure that changes are made in response to
consumer, youth, and family input and that the changes made are achieving desired
ends.
 Par ticipation o f the R ec ove r y C ommuni t y 99

Transformation
Executive Committee

Transformation Multiagency Oversight Committee

QUIC Steering
Committee
Yale Program for
Recovery and
Community Health
Central Coordinating
Council

Consumer Research
and Evaluation Survey Administration
Network

Figure 5.3  Structure of quality improvement collaborative.

of participants from various communities and groups. The group also received lim-
ited technical assistance from the Yale PRCH, whose consultants were also persons
in recovery (including authors LD and PR). This initiative is depicted in Figure 5.3.
The Council has had five major accomplishments to date. As a first step, the
Council articulated a set of standards for involving consumers, youth, and family
members in quality improvement activities within all mental health agencies and
organizations receiving state funding. An excerpt from these standards is provided
in Table 5.3. Based on these standards, as a second step, the Council then devel-
oped a survey for consumers, youth, and family members to assess their personal
involvement in quality improvement activities in the agencies and organizations
from which they or their family members received care. Members of the Council
were trained in survey administration (by the first author and another Yale PRCH
faculty member, Cheryl Bellamy), and the survey was then administered by the
trained consumer and family interviewers to nearly 300 consumers, youth, and fam-
ily members across the state. This survey developed a baseline picture of the degree
to which respondents were involved in quality improvement activities at the start
of the project.
The most salient findings of this survey were that family members consistently
reported a lower level of involvement in quality improvement activities than did
consumers and that consumers rated the mental health system as performing satis-
factorily on only 6 of the 20 dimensions assessed. The dimensions receiving satis-
factory scores included people (a) making decisions about their own care, (b) being
asked about their personal goals, (c) being assured that they will not suffer conse-
quences for offering their opinions about care, (d) receiving a respectful and timely
100 Transformative Change & Consumer Participation

Table 5.3  An Excerpt from Standards for the Involvement of Consumers, Youth,
and Family Members in Mental Health Quality Improvement Activities
Individual Consumers and Youth. . .
1. a re informed about what they might expect and possible outcomes of the services
and/or supports available to them.
2. a re informed about alternatives and service and support options, including those
available through other agencies or organizations.
3. a re involved in making decisions with providers about their goals, their recovery
plan, and the services and/or supports they will use.
4. a re involved in the scheduling of meetings and appointments to discuss the care
provided to them.
5. a vailability, transportation, and childcare needs are considered to ensure them the
opportunity to attend scheduled meetings.
6. a re encouraged to include family members, friends, and other people they
consider supportive in planning and implementing their care.
7. a re offered opportunities to provide direct feedback to providers regarding the
quality of care at the time it is delivered.
8. a re informed of how and whom to contact when they have concerns or wish to
make changes in their care.
9. a re informed about and have ready access to formal grievance procedures to
address their dissatisfactions with care.
10. r eceive a respectful and timely response when raising a complaint or filing a grievance.
11. a re assured that they will not suffer any consequences for offering their feedback
or input regarding the quality of care received.
12. a re offered opportunities and provided with resources to integrate their cultural,
racial, and ethnic affiliations and identity into their care.
13. are invited to report their level of satisfaction with care on a regular and ongoing basis.
14. a re invited to assist in designing the methods and measures the agency will use to
determine satisfaction with care.
15. a re offered preparation and support if needed to participate in quality
improvement activities.
16. a re invited to participate in the evaluation and monitoring of service outcomes.
17. a re invited to be involved in developing and conducting needs assessments.
18. are invited to be involved in identifying priorities for resource allocation.
19. are invited to be involved in the design and development of new services and supports.
20. are offered reimbursement for participation in quality improvement activities.
Excerpted from Connecticut Department of Mental Health and Addiction Services (2010).
Involvement of Consumers, Youth, and Family Members in Mental Health Quality Improvement
Activities. Hartford, CT: Connecticut Department of Mental Health and Addiction Services.
 Par ticipation o f the R ec ove r y C ommuni t y 101

response to concerns they express, (e) feeling comfortable telling providers what

they think about the care they receive, and (f) reporting that providers explain to
them the choices of services and supports available at the providers’ agencies. The
top two of these dimensions, making decisions and setting personal goals, also elic-
ited a greater than 10% response rate of “I don’t know” or “am not sure,” however,
suggesting that these issues have been addressed unevenly across the state. These
findings were disseminated across the state, along with the complete set of stan-
dards, further educating providers about the changing expectations and roles that
the recovery community would play within the process of transformation.
In addition to collecting baseline data and identifying areas for improvement in
relation to consumer and family involvement in quality improvement activities, the
success of this pilot survey demonstrated that consumers, youth, and family were
able to co-develop, administer, and interpret their own survey, with targeted techni-
cal assistance. This process contributed to a growing interest in the state in service
user involvement in research and evaluation projects, leading to a third notewor-
thy accomplishment:  the development of a Consumer Research and Evaluation
Network (CREN). The CREN was developed by the Yale PRCH as part of its
evaluative function to engage consumers, youth, and family members in all phases
of research and evaluation activities and increase consumer, youth, and family
voice in research and policy in the state. Faculty members of Yale PRCH recruited
CREN members and provided ongoing technical assistance and training to them
in the development and administration of surveys and the analysis of qualitative
and quantitative data. The CREN has since become a vital source of experience and
expertise in transforming the way new mental health knowledge is generated and
in ensuring that it is responsive to the needs and values of the recovery community
(Davidson et al., 2009b).
One example of the CREN’s work is provided by the fourth and fifth accomplish-
ments of the Council. Following completion of the first survey on involvement in
quality improvement activities, the Council turned its attention to developing a way
to assess the quality of care provided in the local system of care from the perspective
of consumers, youth, and family members. With consultation and support from the
second author (PR), the Council identified 19 core characteristics of quality men-
tal health services and supports and adapted a survey (the Elements of a Recovery
Facilitating System [ERFS] measure) designed by PR and colleagues as part of the
transformation effort that could assess the care provided in relation to many of these
characteristics. The dimensions of recovery-oriented care assessed, and the four
domains into which they fall, are presented in Figure 5.4. The QUIC survey sub-
committee members selected the ERFS survey as the best means to assess quality of
care after a thorough review of existing measures. The committee, QUIC staff, and
PR worked to adapt the measure, given subcommittee input, and they created four
versions, one for adult mental health consumers, one for family members of adult
consumers, one for families of children, and a fourth version for youth. Through
102 Transformative Change & Consumer Participation

the CREN, 75 consumers, youth, and family members were trained in interviewing
skills, ethics, and other logistics. They administered the survey to more than 1,200
consumer, youth, and family members over a 3-month period across the state. The
survey was conducted through face-to-face administration (N = 900) and through
a web-based application (N = 300). Surveys were administered in both English and
Spanish. These additional components of the QUIC are depicted in Figure 5.3.
To facilitate ease of understanding, the scores on the ERFS quality assessment
were converted into letter grades similar to US school rankings (i.e., A, B, C, D,
and F), and the data were analyzed by group (i.e., adult consumers, youth, family
members of children/youth, and family members of adults), by race and ethnicity,
by age, by the number of years the target person had received services, by region of
the state, and by the conceptual domains depicted in Figure 5.4. As one example,
Table 5.4 shows the letter grade assigned to each of the four domains by youth and

Person/Family-Centered
• consumers treated as whole
people who can learn, grow &
change
• staff help CYF* see & use
their own strengths and help
CYF create healthy daily
routines
• staff respect CYF race,
religion, & culture
• staff seem to hold hope for
consumers Community-Based
Accessible/Coordinated/ • staff help CYF with basic
Continuous** needs (e.g., income, housing,
• all services well coordinated transportation)
• CYF given choices among good • CYF can get services in their
Elements of a
service options & providers own homes and communities
Recovery/
• staff share information clearly Resilience • staff help consumers succeed in
and openly with CYF Facilitating typical life roles (e.g., student,
System worker, friend)
• consumers can receive services
for as long as needed • staff help consumers get & stay
connected to others
• services & supports & education
are available to family members • consumers offered support &
if needed Consumer/Family-Driven opportunities in education

• treatment plan based on

consumer's own goals
• staff respect CYF as full partners
and teach CYF how to cope
• CYF have a say on how programs
are run and get to make choices
about care
• CYF are told about their rights
and how to uphold them
• consumers have access to
positive peer role models & peer
supports

Figure 5.4  The elements and domains of the elements of recovery-facilitating systems.

 Par ticipation o f the R ec ove r y C ommuni t y 103

Table 5.4  Grades Assigned to Elements of a Recovery Facilitating System (ERFS)

Domains by Youth and Adult Consumers

Overall Person/ Consumer/ Community- Accessible/

Family- Family- Based Coordinated/
Centered Driven Continuous
Adult, N= 568 497 485 443 513
Mean 4.02 4.19 3.98 3.81 4.07
Score 80% 84% 80% 76% 81%
Grade B− B− B− C+ B−
Youth, N= 146 135 134 120 138
Mean 4.03 4.22 3.98 3.97 4.01
Score 81% 84% 80% 79% 80%
Grade B− B− B− C+ B−

adult consumers who had very similar assessments of the quality of the care they
were receiving. As a matter of coincidence, or alternatively, as evidence of conver-
gent validity, the overall statewide grand mean or score from these ratings (B−) is
very close to that attributed to this state by the most recent rankings of the states
by the National Alliance on Mental Illness (B; 2009) in a process that used several
methods to determine the quality of care provided by each state’s mental health
system.
In addition to exploring ratings differences across the four conceptual domains,
much can be learned by examining those items that received the highest ratings
and those that received the lowest. Figure 5.5 includes those items rated highest
and lowest by adult consumers. As seen in Figure 5.5, consumers generally felt that
care providers held out hope for them and saw them as capable of learning and
growing, but they indicated that they were less likely to be offered opportunities
for giving input or feedback about how programs were developed and run. Also,
although they indicated that services were available to them as long as they were
needed, they reported not receiving much assistance with their basic needs. As seen
in Figure 5.6, youth agreed that providers held out hope for them and saw them as
capable of learning and growing, and they also noted that staff were interested in
and respected their race, religion, and cultural background. These findings were wel-
come by system leaders who had invested considerable time and resources over the
previous decade in training providers on the importance of recovery and cultural
competence. But youth also indicated that they had little input into program design
and development and noted that they were less often educated about their rights or
assisted in staying connected to, or connecting with, family or friends. Such findings
have obvious relevance for further system transformation efforts.
104 Transformative Change & Consumer Participation

3 Staff treat me as a person who can learn, grow, and change. 85%

4 Staff seem to hold hope for me. 86%

Survey Question

20 I can receive services for as long as I need them. 87%

10 I have a say on how programs are run. 72%

Staff help me with my basic needs, such as income,

12 73%
housing, and transportation.

0 10 20 30 40 50 60 70 80 90 100
Score (%)

Figure 5.5  Highest and lowest rated items by adult consumers.

These surveys are primarily quantitative methods for assessing the system’s
quality. A final example of the CREN’s work involved the use of qualitative/nar-
rative methods that generated important and provocative implications for systems
change. This project, entitled “A Day in the Life,” was a consumer-led study of the
everyday lives of 80 persons with serious mental illnesses who were interviewed

Staff treat me as a person who can learn, grow, change, and

3 86%
develop well.

4 Staff seem to hold hope for me. 85%

6 Staff show interest in and respect my race, religion, and culture. 87%
Survey Question

8 I can have input into how my program is run. 87%

12 I am told about my rights and how to protect them. 72%

Staff help me get connected and stay connected to

13 73%
others, including family and friends.

0 10 20 30 40 50 60 70 80 90 100
Score (%)

Figure 5.6  Highest and lowest rated items by youth.

 Par ticipation o f the R ec ove r y C ommuni t y 105

by one of eight consumer researchers using an open-ended narrative protocol they

developed in collaboration with the first author (LD). The protocol focused on how
people with serious mental illnesses currently spent a typical day, what they wanted
their life to be like on a daily basis, the roles that mental health services had played
in helping or hindering their efforts to have the kind of life they desired, and the
services and supports they would choose had they the opportunity to do so. After
collecting 80 narrative interviews, the consumer researchers asked the first author
to teach them how to analyze the qualitative data, and, eventually, the group devel-
oped a live performance piece based on the common themes found in these narra-
tives (Davidson et al., 2010).
Of most direct relevance to transformation efforts were the findings of this study
that pertained to the ways in which existing mental health services had limited par-
ticipants in achieving recovery. In brief, the participants in this study suggested that
mental health care had been helpful primarily in lessening the effects of having a
serious mental illness, but it had not been as helpful in their efforts to recover their
lives. One of the participants who did credit mental health care with supporting her
in facing both of these challenges said:

I’m working at bettering myself, bettering my life through the help of the
agency. I’ve been associated with the agency for 25 years. The agency has
helped me to not only get back from my mental illness, but to keep on
working at recovering so that someday I will recover and my life will be as
normal as anybody else’s life. I’d like to live a normal life too. (2010, p. 106)

Most participants, though, felt that mental health providers had stopped short of
this kind of assistance, having helped the person to “get back from [the] illness” but
not to regain a full life. The participants seem to agree that one thing that would be
helpful in this regard would be some kind of “map” or guide that would assist them
in rejoining everyday life. As one participant explained: “I don’t know how to find
my way in the world” (p. 101).
These qualitative findings confirm and expand on some of the survey findings
presented earlier, in which respondents indicated that staff stops short of assisting
them with addressing their basic needs and with connecting them to others such
as family or friends. As a result of this kind of consumer feedback, efforts are under
way to develop tools and to train peer staff in functioning more as “community
guides” or “recovery mentors” (Davidson et al., 2009c).

Conclusion
The strategies described here illustrate at least two of the core principles of transfor-
mative change that the editors present in the introductory chapters of this volume.
106 Transformative Change & Consumer Participation

The first of these principles is derived from what the editors describe as “the con-
cept of epistemic psychopolitical validity.” This principle suggests that transforma-
tive change requires that the problems and issues to be addressed be recast from
the perspective of those people who are most directly affected by them; in this
case—people in recovery. Affording them the power to redefine the problems to
be addressed from their own perspective and in their own terms both requires and
facilitates their taking on active and empowered roles within the system of care
in which they had formerly been expected only to be the passive recipients of the
actions of others.
The second principle is that lay and experiential knowledge are elevated through
the transformation process to become a highly valued complement to professional
knowledge. This principle was at work both in the consumer, youth, and family qual-
ity improvement collaborative and in the “A Day in the Life” project. In the quality
improvement collaborative, consumers, youth, and families identified the ways in
which they would like to be involved in improving the quality of care and defined
what they considered quality care to involve. In the qualitative study, consumers
reflected on their own experiences and the experiences of their peers to identify
those aspects of mental health care that have been most useful to them and the ways
in which mental health care has fallen short of offering them the opportunities and
supports they need to have the full lives they desire. The lay and experiential knowl-
edge gained from these kinds of surveys and studies can be instrumental in suggest-
ing directions for innovation in service and support development—and in broader
system change—as we all strive to more effectively accomplish the key goal of trans-
formation: “a life in the community for everyone” (DHHS, 2005).
The work described in this chapter demonstrates that by opening up a range
of new opportunities and supporting the recovery community as they step into
challenging roles and responsibilities, people can define their own concerns and
articulate a clear set of needs and wants. The issues they raise must be addressed
if true transformation is to occur and to result in a consumer- and family-driven
system of care. Having consumers and family members involved in many and sub-
stantive ways in system governance and using mechanisms such as consumer- and
family-run quality improvement and evaluation processes are among the ways to
ensure this kind of accountability. As a result, consumer- and family-driven sys-
tems of care can become more than rhetoric and can result in a clear and articulate
agenda for change.

Acknowledgments
Work on this chapter was supported by a Mental Health Transformation State
Incentive Grant awarded to the State of Connecticut by the Substance Abuse and
Mental Health Services Administration.
 Par ticipation o f the R ec ove r y C ommuni t y 107

References
Chamberlin, J.,  & Rogers, J.  A. (1990). Planning a community-based mental health sys-
tem: Perspective of service recipients. American Psychologist, 45(11), 1241–1244.
Davidson, L., Kirk, T., Rockholz, P., Tondora, J., O’Connell, M. J., & Evans, A. C. (2007). Creating a
recovery-oriented system of behavioral health care: Moving from concept to reality. Psychiatric
Rehabilitation Journal, 31(1), 23–31.
Davidson, L., Shaw, J., Welborn, S., Mahon, B., Sirota, M., Gilbo, P., McDermid, M., Fazio,
J., Gilbert, C., Breetz, S., & Pelletier, J. F. (2010). “I don’t know how to find my way in the
world”: Contributions of user-led research to transforming mental health practice. Psychiatry,
73(2), 101–113.
Davidson, L., Ridgway, P., Schmutte, T., & O’Connell, M. (2009b). Purposes and goals of service
user involvement in mental health research. In J. Wallcraft, M. Amering, & B. Schrank (Eds.),
Handbook of service user involvement in mental health research (pp. 87–98). London: Wiley.
Davidson, L., Ridgway, P., Wieland, M., & O’Connell, M. (2009a). A capabilities approach to men-
tal health transformation: A conceptual framework for the recovery era. Canadian Journal of
Community Mental Health, 28(2), 35–46.
Davidson, L., Tondora, J., O’Connell, M. J., Lawless, M. S., & Rowe, M. (2009c). A practical guide
to recovery-oriented practice:  Tools for transforming mental health care. New  York:  Oxford
University Press.
Department of Health and Human Services (DHHS). (2003). Achieving the promise: Transforming
mental health care in America. Final report. Rockville, MD: Author.
Department of Health and Human Services (DHHS). (2005). Transforming mental health care in
America. Federal action agenda: First steps. Rockville, MD: Author.
Grant, J. (2007). The participation of mental health service users in Ontario, Canada: A Canadian
application of the Consumer Participation Questionnaire. International Journal of Social
Psychiatry, 53(2), 148–158.
Hoge, M.  A. Davidson, L., Griffith, E.  E. H., Sledge, W.  H.,  & Howenstine, R. (1994). Defining
managed care in public sector psychiatry. Hospital and Community Psychiatry, 45, 1085–1089.
McKnight, J. (1992). Redefining community. Journal of Social Policy, 56–62.
National Alliance on Mental Illness. (2009). Grading the states, 2009. Arlington, VA: Author.
Rutter, D., Manley, C., Weaver, T., Crawford, M. J., & Fulop, N. (2004). Patients or partners? Case
studies of user involvement in the planning and delivery of adult mental health services in
London. Social Science & Medicine, 58, 1973–1984.
Telford, R.,  & Faulkner, A. (2004). Learning about service user involvement in mental health
research. Journal of Mental Health, 13(6), 549–559.
Turner, J. C., & TenHoor, W. J. (1978). The NIMH Community Support Program: Pilot approach
to a needed social reform. Schizophrenia Bulletin, 4, 319–349.
 6

The Impact of Mental Health

Consumer-Run Organizations
on Transformative Change
louis d. brown and susan roger s

Mental health consumer-run organizations (CROs)* can be difficult to charac-

terize because they pursue a variety of goals and activities. However, CROs are
united in their emphasis on the importance of having mental health consum-
ers in charge of organizational operations and in their basic philosophy, which
involves the principles of choice and self-determination. This chapter reviews
the history and evolution of CROs from small self-help groups to a broad array
of services funded by government and private sources, including consumer-run
national technical assistance centers, drop-in centers, crisis residential programs,
and advocacy organizations. Examination of the guiding philosophy and theoreti-
cal foundations of CROs provides insight into how CROs create transformative
change. A review of the evidence base for different types of CROs identifies sev-
eral rigorous evaluations indicating that CROs can operate effectively and help to
achieve transformative change, although more work is needed to understand the
conditions under which CROs are successful. Drawing from the literature and
decades of experience supporting the development of CROs, we suggest some
best practices for CRO success. Finally, we consider future research directions to
advance the science and practice of CROs, including the need to rigorously evalu-
ate the utility of the best practices suggested in this chapter without interfering
with the basic character of CROs.

* It is important to note that a number of words and phrases are used to describe individuals who
have been diagnosed with mental illnesses. The default term in this chapter is “consumer,” but other
words and phrases are also used. In addition, it should be noted that many individuals in the con-
sumer/survivor movement reject the term “mental illness.”

108
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 109

Transformative Change and Mental Health

Consumer-Run Organizations
The rise of mental health CROs represents a fundamental transformational change
in the nature of the mental health system. In the traditional mental health sys-
tem, consumers often get stuck in dependency roles that have counterproductive
expectations. To receive care, consumers must prove their incompetence. Once
consumers have proven they are incompetent, they can receive care as long as they
continually try and fail to get better. If consumers start to become competent in tak-
ing care of themselves by holding down a full-time job, they lose all access to care.
Thus, consumers start “making it crazy” by continually trying and failing to take care
of themselves (Estroff, 1985).
Consumer-run organizations represent transformational change because they
alter the dynamics of the traditional mental health system. Instead of depending on
professionals, consumers work together to support one another both as friends and
as collaborators who contribute to organizational operations (Brown, Shepherd,
Merkle, Wituk, & Meissen, 2008). Rather than “making it crazy,” consumers start
“making it sane” through reciprocal helping relationships in which people interact
as equals and earn what they receive (Brown, 2009b).
Consumer control over helping organizations within the mental health system
fundamentally alters the power relationships of the system. Rather than relying
on the judgment of professionals, consumers determine organizational pursuits,
and professionals operate as supportive consultants—if they are at all involved.
Consumer-run organizations also provide consumers with opportunities to fill ser-
vice provider roles instead of always being in the help recipient role.
Consumer-run organizations typically target goals such as enhanced cop-
ing skills, advocacy to combat discrimination and prejudice, and progress toward
recovery (Brown, Shepherd, Wituk, & Meissen, 2007). The degree to which mental
health professionals influence organizational decision making varies substantially;
however, consumers control final decisions. Research indicates that consumers can
successfully operate numerous initiatives including:

• self-help groups (e.g., Burti et al., 2005);

• drop-in centers (e.g., Brown, Wituk, & Meissen, 2010);
• case management programs (e.g., Solomon & Draine, 1996);
• peer support specialist services (e.g., Salzer, Schwenk, & Brusilovskiy, 2010);
• crisis residential services (e.g., Greenfield, Stoneking, Humphreys, Sundby,  &
Bond, 2008);
• technical assistance organizations (e.g., Rogers, 2010); and
• advocacy coalitions (e.g., Fisher & Spiro, 2010).
110 Transformative Change & Consumer Participation

Although CROs do not fit neatly into a small number of categories, locating a
CRO on continuums of organizational structure and organizational focus provides
insight into the nature of its operations and the outcomes of its efforts. Self-help
groups exemplify the unstructured end of the organizational structure continuum,
which is also characterized by the informal nature of interpersonal relations and a
reliance on members’ volunteer contributions for all group activities. Consumer-run
organizations such as certified peer specialist training programs and crisis resi-
dential services rely on paid staff and maintain substantially more structure than
self-help groups. Some self-help initiatives, such as consumer-run drop-in centers,
rely on a mixture of paid and volunteer support and typically fall in the middle of
the continuum of organizational structure.
The structure of a CRO typically evolves over time, and, as CROs grow, they are
likely to face pressure to adopt a more formal structure. However, adding organiza-
tional structure to manage growth can have devastating unintended consequences
as the advantages of unstructured initiatives are lost (Smith, 2000). Unstructured
groups lack role differentiation, which enables informal, highly personalized inter-
actions between group members; these interactions are typically warmer, more
encouraging, and more accepting than interactions in structured organizational
bureaucracies (Wuthnow, 1994). Smaller CROs are also better able to promote
the investment and involvement of all participants because all contributions are
needed and consensus-driven decision making is feasible. The lack of hierarchy
and bureaucracy encourages mutual support, intimacy, and sharing. Relying exclu-
sively on internal funding also ensures independent control over organizational
activities and prevents cooptation by external funding agencies (Brown et  al.,
2007).
Although small informal organizations manifest several characteristics that pro-
mote CRO success, developing organizational structure also has several advantages.
Large size and hierarchical role differentiation enable economies of scale, which are
more efficient at the production of goods and the provision of services (Milofsky,
1988). Obtaining external funding allows CROs to pursue activities and programs
that cannot be accomplished otherwise. The role specialization and clear chain of
command that accompany a structured organization can help promote efficient,
goal-focused interactions and rapid organizational decision making. Training and
certification requirements help to ensure that paid staff members possess the skills
necessary to fulfill role expectations.
Although these characteristics of structured organizations are frequently neces-
sary for CROs to become effective service providers, there is concern that paying
consumers to help other consumers will reproduce the power inequities that cur-
rently exist in the professional mental health system. Such payment can weaken
the effectiveness of mutual support because all participants are not equal (Smith,
2000). Although debate about the impact of funding on the mutually supportive
nature of a CRO continues, using consumers as service providers helps to address
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 111

the poverty-level conditions experienced by many mental health consumers and

may help to build stronger therapeutic alliances (Solomon, 2004).
Organizational focus can also aid the classification of CROs. At one end of the
continuum are initiatives with an internal focus on helping members; at the opposite
end are externally focused initiatives that target changes in mental health policy and
the broader community. Many CROs pursue both internal and external goals. For
example, consumer-run drop-in centers often make presentations in the commu-
nity to enhance education about mental illnesses and to combat discrimination and
prejudice (words that most in the consumer/survivor movement prefer to the word
“stigma”). Consumer coalitions that directly target mental health policy changes also
frequently invest in improving the leadership skills of their members. Understanding
the focus of a self-help initiative enables the specification of appropriate indicators of
success. Success for internally focused initiatives may be indicated by the enhanced
well-being of participants, whereas the success of externally focused initiatives may
be improvements in mental health policy or reduced prejudice and discrimination
against individuals diagnosed with mental illnesses in the community.

History
In the 19th century, individuals diagnosed with mental illnesses were routinely
locked away in psychiatric institutions where the treatment—which was admin-
istered by staff who rarely, if ever, held out hope that those in their care could
recover—usually ranged from unhelpful or neglectful to abusive, traumatizing,
even life-threatening (Anderberg, 2011; Maisel, 1946). With the passage of the
Community Mental Health Centers Act (1963) in the United States, the commu-
nity treatment and rehabilitation paradigm emerged; its focus was on providing
services designed to help people live in the community and avoid hospitalization.
Although this was an advance, treatment continued to emphasize deficits rather
than strengths, and an imbalance of control persisted between professionals and
clients (Carling, 1995; Nelson, Lord, & Ochocka, 2001). Many individuals had a
physical presence in the community while remaining socially and psychologically
unintegrated (Mowbray, Greenfield,  & Freddolino, 1992; Sherman, Frenkel,  &
Newman, 1986).
In response to weaknesses in this model, the empowerment and community
integration paradigm emerged (Nelson, Walsh-Bowers, & Hall, 1998; see also www.
tucollaborative.org), emphasizing individual choice and control. This philosophical
shift provided important support for self-help, which has a rich history. For exam-
ple, in the 1940s, We Are Not Alone (WANA) was founded by former psychiat-
ric patients to help their peers make an easier transition from the hospital into the
community. Their efforts resulted in Fountain House (see www.fountainhouse.org/
content/history), which created the “clubhouse” model (see iccd.org).
112 Transformative Change & Consumer Participation

Among the oldest mental health self-help initiatives are Recovery International
and GROW. Recovery International was founded in 1937 as a therapy group; it
became fully consumer-controlled in 1952 and now hosts more than 500 self-help
groups internationally, along with telephone and online meetings (Recovery
International, 2009). GROW, another international self-help network, was founded
in 1957 by consumers who developed their own 12-step program based on Alcoholics
Anonymous. Through the “self-help revolution” (Norcross, 2000), numerous
other user-run groups have followed, including Schizophrenics Anonymous, the
Depression and Bipolar Support Alliance, and Emotions Anonymous. Internally
focused, minimally structured self-help groups remain the most prevalent form of
self-help (Goldstrom et al., 2006).
Movement pioneers include Elizabeth Packard, founder of the Anti-Insane
Asylum Society, who, beginning in 1868, published writings describing her expe-
riences in the Illinois asylum to which her husband had had her committed, and
Clifford W.  Beers, author of A Mind That Found Itself (1908), who founded the
National Committee on Mental Hygiene (now Mental Health America).
The modern consumer/survivor/ex-patient (c/s/x) movement began in the
United States as the “mental patients’ liberation movement” in the early 1970s, when
“ex-inmates” who fiercely rejected the professional mental health system began to
organize, mostly in cities on the East and West Coasts (Chamberlin, 1990). At the
same time, others were organizing abroad (Rissmiller & Rissmiller, 2006). Inspired
by the civil rights movement and galvanized by the traumatizing treatment they
had received in institutions, they established groups with names such as the Insane
Liberation Front in Portland, Oregon (founded in 1970), the Mental Patients’
Liberation Project in New York City and the Mental Patients’ Liberation Front in
Boston (both founded in 1971), and the Network Against Psychiatric Assault in
San Francisco (founded in 1972; see www.power2u.org/articles/history-project/
ex-patients.html).
The goals of these groups included fighting for their rights and to end forced
treatment, eradicating prejudice, ending economic and social discrimination, and
creating peer-run services as an alternative to the traditional mental health system.
The principles of control, choice, self-determination, and empowerment were cen-
tral to this growing movement and to the services that peer activists established.
Unlike professional mental health services (based on the medical model),
peer-run services centered around the principle that those who had “been there,
done that” could help themselves and each other without the power differen-
tial that was unavoidable in the professional mental health system. These groups
provided support, education, and advocacy (see mhselfhelp.org/techasst/view.
php?techasst_id=16).
At first, people met in church basements or each other’s homes. Then, some
groups established “drop-in centers,” such as the Ruby Rogers Center, founded in
1985 by a group led by Daniel Fisher, MD, PhD, a peer activist/psychiatrist, and
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 113

Judi Chamberlin, author of On Our Own:  Patient-Controlled Alternatives to the

Mental Health System, which became a movement bible (see www.baycove.org/pdf/
Ruby%20Rogers.pdf).
Other such services were springing up. In 1984, movement leader Joseph Rogers
(see www.heinzawards.net/recipients/joseph-rogers) created Project SHARE
(Self-Help and Advocacy Resource Exchange) at the Mental Health Association of
Southeastern Pennsylvania (MHASP; see www.mhasp.org), in Philadelphia. Project
SHARE soon grew to encompass not only drop-in centers but other peer-run ser-
vices, including two programs serving homeless individuals with psychiatric dis-
abilities. One of the two programs was Homeward Bound, a residential program,
which was funded as a result of a “sleep-out” organized by Project SHARE and
Project HOME (see projecthome.org) at the State Office Building in Philadelphia
in 1987. The sleep-out resulted in several million dollars from the state to establish
“low-demand” residences for homeless adults with mental illnesses (Rogers, 1998).
This kind of “in-your-face” advocacy, which may involve nonviolent direct action,
has been characteristic of the c/s/x movement from its inception—and the results
have often been transformative. For example, in 1993, following an announcement
by the Substance Abuse and Mental Health Services Administration, Center for
Mental Health Services (SAMHSA/CMHS), that Community Support Program
grants were going to shift away from supporting consumers and families, 60 or 70
c/s/x activists staged a sit-in in front of the office of brand-new CMHS director
Dr. Bernard Arons until he agreed to talk with them. As a result of this action—
coupled with an outpouring of letters and phone calls from consumers and family
members from around the United States—the policy was reversed and, instead of
discontinuing the federal grants for consumer initiatives, it was decided that addi-
tional consumer enterprises would be funded. “It was a living demonstration of
empowerment and how strong the movement has become,” said Jackie Parrish, then
acting director of the Community Support Program (Heidorn, 1993–94).
The increasing numbers of peer-run services not only helped those who used
them but provided those who staffed them with meaningful employment, which
is considered central to recovery. Those hired by such services might not have had
the most impressive resumes. “We count informal experience to be as valuable as
formal job experience,” said early movement leader Howie the Harp (1953–1995;
see www.recoveryxchange.org/HowietheHarp.html), founder of the Oakland
Independence Support Center in California (Rogers, 1994).
In 1986, Joseph Rogers saw the need for a consumer-run national technical assis-
tance center to support the burgeoning movement and created the National Mental
Health Consumers’ Self-Help Clearinghouse (www.mhselfhelp.org). Through a
competitive grant process, SAMHSA has subsequently funded five national techni-
cal assistance centers to serve the c/s/x movement.
The movement has worked hard to gain “a seat at the table,” where individuals
with “lived experience” could have an impact on the policies that affected their lives.
114 Transformative Change & Consumer Participation

A motto that emerged in the disability rights movement internationally and that has
been embraced by the c/s/x movement is “Nothing About Us, Without Us” (see
www.un.org/esa/socdev/enable/iddp2004.htm).
C/s/x activists have spent decades convincing the establishment of the impor-
tance of self-help and peer support through attending meetings of professionals and
administrators, serving on boards and committees, writing and publishing books
and articles, making presentations at conferences, and advocating on the local, state,
and national levels.
Among the many achievements of the movement in the United States—where
c/s/x activists have fought “from the streets to the suites”—is the creation of state-
wide c/s/x networks, now joined together in the National Coalition for Mental
Health Recovery (previously the National Coalition of Mental Health Consumer/
Survivor Organizations), which was founded in 2006 to ensure that consumers/
survivors “have a major voice in the development and implementation of health
care, mental health, and social policies at the state and national levels, empowering
people to recover and lead a full life in the community” (see www.ncmhr.org).
Other achievements include closing state hospitals; making some progress
toward ending the use of seclusion and restraint; creating Offices of Consumer
Affairs (see www.nasmhpd.org/nac_smha.cfm) mostly staffed by c/s/x activists
(although, in the past, such offices have received mixed reviews; Rogers, 1998);
generating general acceptance of peer support as a vital component in recovery
(see www.samhsa.gov/news/newsreleases/060215_consumer.htm); and acknowl-
edgment of the fact that individuals with mental health diagnoses can—and do—
recover (see www.surgeongeneral.gov/library/mentalhealth/home.html; store.
samhsa.gov/product/SMA03-3831). The Americans with Disabilities Act (1990;
www.ada.gov), a landmark piece of civil rights legislation, has given the weight of
law to the fight against discrimination, and its community integration mandate was
upheld by the US Supreme Court’s 1999 Olmstead decision (see www.bazelon.org/
Where-We-Stand/Community-Integration/Olmstead-.aspx).
Over time, as the consumer movement has grown, it has become more diverse,
including both individuals who reject the traditional mental health system and
those who believe that it must be reformed but that it has something to offer.
Over the past 40 years, recipients of mental health services have increasingly had
an influence on the public mental health system. As movement activists demanded
a voice in mental health policy making, they increasingly gained access to men-
tal health policy-making and advisory committees. In addition, the number of
peer-run services—drop-in centers, employment services, residences, crisis respite
services, and others—increased. Many of these services incorporated and received
tax-exempt status. Many received funding from federal, state, and local agencies.
Elements of the professional mental health system have also embraced the use of
self-help and promoted it as a means of achieving recovery (Solomon, 2004). In
addition, the services of peer support specialists are now Medicaid-reimbursable
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 115

in a number of states (Sabin  & Daniels, 2003). Over the past decade, the “peer
specialist” profession has gained increasing acceptance. In some states, beginning
with Georgia (see www.gacps.org/Home.html) in 2001, peer specialists are being
trained and certified (Eiken & Cambell, 2008). However, some activists believe that
the regulations governing reimbursement hamper peer specialists’ ability to freely
advocate on behalf of their “clients.” A trade association—the National Association
of Peer Specialists, which is now called the International Association of Peer
Supporters (www.naops.org)—was created in 2004 to promote the new profession.
The ideology of the c/s/x movement has increasingly gained mainstream accep-
tance, and its advocacy on behalf of consumer rights, empowerment, and a recovery
orientation in the mental health system has had an increasing impact on mental
health policy. But much remains to be done.

Theoretical Foundations
Although many CROs developed without the use of formal theoretical frameworks,
CRO leaders and allies can nevertheless refine their efforts through careful reflec-
tion on how CROs achieve desired outcomes. This chapter provides a relatively
brief overview of some theoretical perspectives that are particularly useful in under-
standing CROs. Readers interested in a more thorough description of the theoreti-
cal foundations of CROs are referred to Brown and Lucksted (2010) and Solomon
(2004). Here, we discuss empowerment theory to provide insight into how CRO
settings influence individual outcomes. We also discuss the helper-therapy princi-
ple and experiential knowledge to outline some of the interpersonal processes that
lead to individual benefits. Although not discussed here, the “role framework” helps
to integrate these unique theoretical perspectives (Brown, 2009a; 2009b; in press).

Empowerment Theory
Empowerment theory emphasizes that consumers have the right to gain control
over their lives; make informed decisions about how they will use mental health
services, rather than being passive recipients of others’ treatment decisions; and
take actions on their own behalf (Dickerson, 1998). Consumer-run organization
participation can enhance empowerment at the individual, organizational, and
community levels (Segal, Silverman, & Temkin, 1993).
Consumer-run organizations promote individual empowerment by empha-
sizing self-determination. Involvement in empowering CRO leadership roles can
lead to enhanced personal empowerment (Brown et al., 2008; Segal & Silverman,
2002). At the organizational level, CROs are uniquely empowering because they
are consumer-driven, thereby collectively empowering consumer leaders to deter-
mine organizational direction. When governments provide CROs with funding,
116 Transformative Change & Consumer Participation

they empower consumers by giving them access to the resources necessary to pro-
vide needed services. At the community level, CROs empower consumers when
they organize advocacy and public education efforts.

The Helper Therapy Principle

The helper-therapy principle states that providing help can be more therapeutic
than receiving help (Riessman, 1965). Helping others can provide helpers with
numerous benefits, including (a) a sense of self-efficacy, (b) equality in giving and
taking, (c) improved interpersonal skills, and (d) positive regard from help recipi-
ents (Luks, 1991; Skovholt, 1974). Helping roles are especially valuable to people
diagnosed with mental illnesses because these individuals may have had reduced
opportunities to make valuable contributions, such as through work, parenting, or
civic leadership.

Experiential Knowledge
Experiential knowledge refers to the insights, information, and skills that one devel-
ops through coping with challenges. When people share a particular challenge,
experiential knowledge can help them relate to one another and provide appropri-
ate support (Borkman, 1999). This shared experience is particularly powerful in
CROs because the prejudice associated with mental illnesses often sets consumers
apart from others. Therefore, the shared experience of mental health problems fre-
quently acts as a key bonding point in the development of supportive relationships.
Numerous studies have demonstrated the emotional benefits of sharing experi-
ences with others who have faced similar hardships (Helgeson & Gottlieb, 2000),
including validation, normalization of the experience, a reduction in social and
emotional isolation, and a sense of belonging (Lieberman, 1993; Rosenberg, 1984;
Toseland & Rossiter, 1989). Additionally, people who have also “been there” are
often better prepared to provide appropriate support (Helgeson & Gottlieb, 2000).
Their experiences may have taught them certain information, coping strategies, or
tips that can save others from having to learn through trial and error.

Evidence Base
For CROs to fully achieve their potential for transformative change, they must be
as good as or better than existing services provided by nonconsumers. Otherwise,
CROs may transform the mental health system by giving power to a small group
of consumers while reducing the quality of the support available to disempowered
consumers. Attention to the evidence base of different CRO models is important to
consider when making decisions about which models to disseminate widely.
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 117

In general, research on the effectiveness of CROs is encouraging. Much of the

research is qualitative, observational, or quasi-experimental. Nevertheless, random-
ized trials have found that several different types of CROs are effective, including
self-help groups, drop-in centers, case management, and crisis residential services.
With regard to self-helps groups, a randomized trial indicated that a peer-led
depression support group was as effective as a professionally led support group and
cognitive-behavioral therapy (Bright, Baker, & Neimeyer, 1999). Participants in all
three types of groups improved significantly on measures of depression and psychi-
atric symptomatology over the course of the study.
Evidence of the effectiveness of consumer-run drop-in centers comes from two
randomized trials. The SAMHSA/CMHS Consumer-Operated Service Program
(COSP) Multisite Research Initiative was a randomized controlled trial of mul-
tiple CRO models (see www.mimh.edu/cstprogramarchive/consumer%20op/
index.html). Intent-to-treat analyses indicate that random assignment to a CRO
with a drop-in center significantly improved well-being, with a moderate effect size
of .39 (Teague, Johnsen, Rogers, & Schell, 2005). A second randomized trial of
CROs operating a drop-in center found that consumers assigned to the CRO plus
standard treatment showed greater improvements in personal empowerment, self-
efficacy, and social integration compared with consumers receiving standard treat-
ment only (Segal, Silverman, & Temkin, 2010). Findings from the Segal study also
indicate that individuals in the CRO plus standard treatment group demonstrated
greater declines in symptoms and hopelessness compared to those receiving stan-
dard treatment only. Research also suggests that drop-in centers are cost efficient
because of their small budgets and reliance on voluntary leadership, operating on
approximately $8 daily per person in Michigan (Holter & Mowbray, 2005) and
$11.51 daily per person in Kansas (Brown et al., 2007). There is also a massive
amount of anecdotal evidence supporting the effectiveness of peer-run services.
With regard to consumer case management, a randomized trial comparing con-
sumer and nonconsumer case management teams found that consumers are as
effective as nonconsumers at maintaining the stability of their clients (Solomon &
Draine, 1995). More recently, a randomized trial comparing consumer-assisted
case management, nonconsumer case management, and standard clinic-based care
found no differences among the three treatment modalities (Rivera, Sullivan,  &
Valenti, 2007). Consumer providers were, however, different from nonconsumer
providers. Consumers offered more face-to-face interactions and peer-organized
activities, whereas nonconsumers were more likely to use in-office interactions with
professional staff (Rivera et al., 2007; Solomon & Draine, 1996).
A randomized trial compared a consumer-managed crisis residential service
to a state-of-the-art locked inpatient psychiatric facility (Greenfield et al., 2008).
Individuals assigned to the consumer-managed crisis residential service experi-
enced significantly greater improvement in psychopathology and substantially
118 Transformative Change & Consumer Participation

higher service satisfaction. The consumer-managed crisis residential service also

cost less to operate.
Several other nonrandomized design evaluations of CROs provide additional
insight into the effectiveness of CROs but are not reviewed here because of space
constraints. We do, however, note that research findings indicate that CRO activi-
ties can lead to systems-level transformational change, such as changes in service
planning and public policy ( Janzen, Nelson, Hausfather, & Ochocka, 2007; Janzen,
Nelson, Trainor,  & Ochocka, 2006). Considering the low cost of CROs, their
empowering nature, and their ability to provide outcomes that are as good as or
better than nonconsumer services, it seems logical to conclude that CROs should
become a major, if not dominant, component of the mental health system.

Best Practices
Research has proven that CROs can be effective, but it is substantially less definitive
in identifying CRO characteristics that promote success and failure. Ideas about
best practices rely on experience and qualitative insights. Furthermore, best prac-
tices vary substantially across the different types of CROs. Given the current state
of our knowledge of what constitutes a best practice for each CRO, we take two
approaches to describing best practices that we hope will be helpful to readers. The
first approach is to describe best practices that are culled from years of experience
in providing technical assistance to CROs. The second approach is to describe the
operational philosophy and activities of a CRO that has demonstrated positive out-
comes in a randomized trial. (Again, it is important to note that CROs were created
and operated successfully without the input of researchers.)
The Center for Community Support and Research (CCSR) at Wichita State
University has been providing CROs that operate drop-in centers with training and
technical assistance for more than a decade. Research suggests that within these
CROs both socially supportive friendship roles and empowering leadership roles
promote recovery (Brown et  al., 2008). The CCSR’s experience has led to the
identification of several strategies that CROs with drop-in centers use to encour-
age the development of socially supportive friendships and empowering leadership
roles. After describing these strategies that facilitate personal and relational changes
among CRO members, we focus on how CROs can promote transformational com-
munity and policy changes.

Promoting an Empowering Environment

Promoting member involvement in organizational operations is challenging but
critical to organizational success because the task of sustaining a CRO can easily
overwhelm a small leadership base. Adding to the challenge is the fact that, in the
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 119

short term, it often takes longer to train an individual to complete a task than it does
to complete the task without support. However, once new volunteers gain training
and experience, they can begin to make valuable contributions to the organization
independently. Investing in the skill development of volunteers not only promotes
organizational functioning but also fosters an empowering sense of ownership and
commitment to the CRO. The learning opportunities may also help members with
problem solving in other situations. The following subsections discuss strategies to
successfully encourage members to contribute to organizational operations early
and often. The goal is to avoid replicating a disempowering professional environ-
ment where paid staff members take care of consumers.

Volunteer Opportunities
Regularly recruiting members to complete small but recurring duties provides all
members with immediate opportunities to contribute to the daily operations of the
organization. Through tasks such as meal preparation, transportation assistance,
and cleaning/building maintenance, everyone can make substantial contributions
to their drop-in center. Involving members in more complex tasks—such as infor-
mation technology, community education, and advocacy initiatives—is also vitally
important. The use of sign-up sheets can help to promote accountability and com-
mitment. Publicly recognizing and rewarding members for their contributions can
encourage continued volunteerism, enhance camaraderie, and promote self-esteem.
Establishing shared social norms with respect to organizational contributions and
instilling those attitudes early when members join a drop-in center can help get
everyone involved.

Organizational Decision Making

Keeping meetings open, encouraging everyone to attend, and seeking the perspec-
tives of all attendees during discussions can both improve organizational decision
making and help to involve all members in shaping the policies and practices of their
organization. Maintaining nonconfrontational discussions in which all perspectives
are valued can help keep meetings welcoming and productive. Furthermore, when
tackling major organizational decisions, such as voting for board positions, it is espe-
cially important to schedule the meeting at a convenient time and to advertise it.
Involving the majority of the members in such decisions is critical to operating the
drop-in center in a manner consistent with the priorities of the general membership.

Planning and Organizing Activities

Providing members with opportunities to plan, organize, and facilitate activities
that interest them can be one of the most rewarding and productive voluntary
leadership roles offered by drop-in centers. Activities are only limited by members’
120 Transformative Change & Consumer Participation

imagination (and the center’s budget) but may include game tournaments, group
outings, crafts, parties, meals, and learning opportunities (e.g., gardening, cooking,
or computer classes), as well as—very important—advocacy opportunities, such as
travel to the state capital to meet with legislators, or community education oppor-
tunities, such as speaking to church or school groups about the lived experience
of a psychiatric condition. Organizing group activities can foster leadership skills.
Forming several small collaborative groups of members who organize activities on
a rotating or ad hoc basis can help prevent burnout and provide the drop-in center
with a larger pool of members ready to contribute to the center’s success.

Formal Leadership Positions

Consumer-run drop-in center participants can also occupy formal leadership roles
such as board member, shift manager, or director. These positions typically entail
more responsibility, and some may require substantial training on topics such as
grant writing and completing quarterly reports. Organizations may benefit from
having several drop-in members share a full-time paid staff position. This can help
prevent burnout and overreliance on a single member. If one paid staff member
becomes sick, other experienced staff can temporarily fill in. Another strategy
drop-in centers can use to promote shared leadership is to rotate positions on the
board of directors every year. This can encourage the development of new leaders
and prevent entrenched hierarchies from forming.

Promoting a Socially Supportive Environment

The social support available at CROs provides both a powerful incentive for par-
ticipation and promotes recovery (Brown et al., 2008; Mowbray & Tan, 1993). It
is particularly important for the social support to be continually available rather
than time-limited because those who stay involved in CROs have better outcomes
than those who drop out and lose CRO members as a source of support (Nelson,
Ochocka, Janzen, & Trainor, 2006). In the drop-in center context, social support
may be particularly valuable because members can share knowledge gained from
lived experience in managing psychiatric symptoms. This shared background pro-
motes mutual understanding and empathy (Borkman, 1999). Although CROs have
natural advantages in promoting socially supportive relationships, organizational
leaders can employ several strategies to create settings that facilitate relationship
development. The following sections review several organizational strategies that
can promote a more socially supportive environment.

Recognize Member Accomplishments

Recognizing members for their accomplishments and contributions can help them
develop a sense of self-worth as capable and valued members of the organization.
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 121

Furthermore, recognizing member accomplishments can promote mutual affec-

tion between the recipient and the recognizer. Accomplishments can be honored
through both private interactions (e.g., letters, compliments, tokens of apprecia-
tion) and publicly (e.g., banquets, birthday parties). Habitual recognition of mem-
ber accomplishments by organizational leaders can be particularly effective because
drop-in center leaders have a powerful influence on the atmosphere of the organi-
zation. When leaders model supportive interactions, others will often follow their
example, thus enhancing a socially supportive environment.

Organize a Variety of Interesting Social Activities

Social activities provide a medium for the development of close friendships and
enable comfortable social interaction with reduced pressure to maintain conversa-
tion. Although drop-in centers will want to tailor their activities to the interests of
members, some commonly successful activities include holiday parties, craft-making
opportunities, friendly competitions such as pool or chess tournaments or Trivial
Pursuit, group meals such as potlucks, and field trips. Scheduling multiple activi-
ties on a weekly basis and distributing a monthly activities calendar can also help
attract members who are particularly fond of a particular activity but otherwise dis-
inclined to participate. Maintaining a dynamic and engaging environment is espe-
cially important for attracting and retaining new drop-in center members because
they have not yet established the close relationships with other members that can
make any activity enjoyable.

Prevent and Resolve Conflict with a Code of Conduct

As with any open social setting, conflicts between members may occur. If left
unchecked, such conflicts can negatively impact the well-being of members, deter
attendance, erode the socially supportive nature of the drop-in center environment,
and eventually threaten the existence of the organization (Mohr, 2004). An effec-
tive code of conduct that provides all members with a shared set of expectations
can be developed through group discussions that use consensus-driven decision
making to determine acceptable and unacceptable behaviors at the drop-in center,
along with a process for resolving unanticipated problems and for setting the conse-
quences for violating rules. Regularly updating the code can help maintain member
buy-in and ensure that new members can influence its content. It can be most effec-
tive to include a process that focuses on addressing the action in question rather
than criticizing the individual offender.

Develop Self-Help Groups and/or Peer Counselors

Self-help group participation encourages mutual self-disclosure and the formation
of intimate, trusting relationships that carry over to other drop-in center activities.
122 Transformative Change & Consumer Participation

The explicit emphasis on sharing personal struggles and mutual encouragement can
promote socially supportive exchanges that may not occur in relationships devel-
oped through purely social activities. The use of peer counselors also promotes
empathic listening and discussions focused on problem solving. The lived experi-
ence of coping with mental illness can help peer counselors provide practical and
appropriate support.
The preceding sections have presented numerous strategies for promoting
socially supportive and empowering environments; a balance between them
appears to be critical to effective, recovery-oriented CRO operation. Although pro-
moting empowering and socially supportive environments is important for CROs
to successfully empower and enhance the support available to CRO members, it
cannot address the systemic community- and policy-level factors that impact con-
sumer well-being. Transformational change involves not only personal and rela-
tional change, but also community and policy change. Consumer-run organizations
with drop-in centers can be much more than drop-in centers, targeting transforma-
tional change at the community and policy levels. The next sections considers these
targets of CRO efforts.

Promoting Community and Policy Change

Consumer-run organizations with drop-in centers can focus on several different
types of community change. One strategy is to educate community members about
different mental health challenges and the recovery journey. Such educational
efforts can help to reduce fear of and discrimination toward consumers. Developing
relationships with teachers, church leaders, and other community members can
help CROs reach their target audience for presentations. Consumer-run organiza-
tions with drop-in centers can also get involved in volunteer efforts aimed at help-
ing non-CRO members and generally enhancing community well-being. For such
volunteer efforts to be successful, they need to be driven by the passion and energy
of CRO members in a participatory manner.
Consumer-run organizations can also help to empower consumers and promote
transformational change by advocating for policy change. Consumer-run organiza-
tions with 501(c)(3) status must be careful because they are not legally allowed
to pursue advocacy efforts for specific policies; however, they can educate legisla-
tors and policy makers. For example, CROs can set up meetings with legislators,
serve on boards and committees, testify at hearings, and write and publish articles
expressing their viewpoints. Furthermore, CRO members can collaborate outside
of their CRO to pursue policy change, working with such organizations as the Judge
David L. Bazelon Center for Mental Health Law, Mental Health America, and the
National Association for Rights Protection and Advocacy, as well as the National
Coalition for Mental Health Recovery (mentioned earlier). Much can be accom-
plished, as long as it is framed as education rather than lobbying.
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 123

The next section provides insight into CRO best practices by considering the
operating philosophy and activities of a CRO that was part of a randomized trial
demonstrating enhanced well-being among its participants (Cambell, 2009).

The Friends Connection: An Example of Best Practices

The consumer-run Missouri Institute of Mental Health Program in Consumer
Studies and Training led the SAMHSA/CMHS COSP Multisite Research
Initiative, which “investigated the cost-effectiveness of eight consumer-operated
support programs for adults with serious mental illness when offered as an adjunct
to traditional mental health services” (COSP, 2004). The findings suggested that
consumer-operated services “can significantly improve the well-being . . . of adults
with serious mental illness” (COSP, 2004).
One of the eight participating programs was The Friends Connection, founded
in 1989, under the auspices of MHASP. (Due to economic exigencies, the program
ceased operation in the second decade of the 21st century.) The Friends Connection,
“a program without walls,” provided one-on-one peer support for individuals with
co-occurring mental health and substance use issues. On the theory that individuals
with psychiatric disabilities become involved with illicit drugs and alcohol out of a
sense of loneliness, boredom, and stigmatization, The Friends Connection counter-
acted these negative factors by providing friendship, counseling, social support, and
meaningful leisure activities. The program’s philosophy was that recovery will begin
once individuals experience hopefulness and support.
The program hired individuals who are in recovery, matching them with others
who were still embroiled in their addictions. “Having that lived experience from
someone who is still recovering really helped people to move forward,” said Jeanie
Whitecraft, the MHASP division director who developed The Friends Connection.
Over its long history, the program established a track record in decreasing substance
abuse, as well as the use of hospitalization and crisis services (Ludwig, 2011).
Acting as positive role models who know both the ravages of substance abuse
and the serenity of recovery, peers who were employed by the program befriended
program participants and engaged them in clean and sober fun. Together, the
“friends” talked candidly about their own lives and struggles. Once the rela-
tionship was established, they attended 12-step meetings and leisure activities
together. The program also provided supports for people who were looking for
housing or work.
The Friends Connection supplied support when life presented tempting oppor-
tunities for using drugs or alcohol. Program participants discovered that life was
better without the negative support of chemical dependency. The program taught
principles of recovery in action: how to get through drug-infested neighborhoods
without stopping at bars and how to find clean and sober activities.
124 Transformative Change & Consumer Participation

The program’s approach was one of patience and education. If someone “picked
up,” the program did not pass judgment. When participants were not high, peer
employees made an effort to help them identify their need to “use.” Sometimes
participants were able to identify these needs, sometimes not. This was when their
“friends” processed with them what they could do for help the next time they got
the urge to “use.” This could have been anything from going to a 12-step meeting to
talking to a friend or calling their peer counselor.
The Friends Connection knew that relapse is part of the recovery process; so,
whatever challenge the participant faced, the program kept coming back and trying
a new approach. It worked.

Future Directions
Future Research Directions for CROs
Key research questions include the extent to which CROs are helpful and the condi-
tions under which CROs succeed. The most definitive answers to these questions
may come from randomized controlled trials. However, randomized trials are dif-
ficult to execute effectively within CROs because the organizations are typically
dependent on self-selected involvement, which makes the use of random assign-
ment difficult.
One strategy that may make random assignment more feasible is to use an
intensive engagement intervention. A  simple referral is frequently too weak an
engagement intervention because people often do not comply with the recom-
mendation. However, previous research has found sponsorship outreach to be
an effective strategy for increasing the likelihood that referral will lead to atten-
dance (Powell, Hill, Warner, Yeaton,  & Silk, 2000; Sisson  & Mallams, 1981).
Sponsorship outreach requires a committed organizational member to make an
explicit and sustained effort to befriend a potential newcomer and encourage his
or her involvement in the organization. Another strategy for enhancing engage-
ment may be to supplement any in-person or phone contacts from professionals
and CRO members with mailings and e-mails. Evaluations that use these engage-
ment techniques can serve as both excellent outcome evaluations and tests of the
effectiveness of different outreach tactics. Research that provides insight into the
engagement process is of great practical value because some of the most promi-
nent needs of CROs center on member involvement, attendance, and recruitment
(Meissen, Gleason, & Embree, 1991).
Numerous other research strategies are equally promising. For example, lon-
gitudinal observational field studies can study the trajectories of different people
who encounter CROs. Findings can provide insight into patterns of engagement
and disengagement. If enough organizations are included in these studies, they will
be able to examine how group differences influence participation, outcomes, and
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 125

sustainability. Such studies can aid the development of guidelines for ideal CRO
characteristics that promote participation, group sustainability, and individual
benefit.
Qualitative research also has the potential to make important contributions to
our understanding of CROs. For example, in-depth interviews and focus groups
can provide important insight into the refinement of useful CRO models and effec-
tive outreach materials. Interviews with consumer leaders and professionals who
support CROs can help build understanding of how professionals can best support
CROs.
It is important to remember that consumers were developing effective organiza-
tions long before researchers became involved. Thus, when pursuing CRO research,
it is vital to use participatory approaches that draw from the knowledge of those
CRO leaders whose organizations are under study (Nelson, Janzen, Ochocka,  &
Trainor, 2010). In fact, too often, individuals with lived experience have been mar-
ginalized in research initiatives, and it is crucial to ensure not only their token par-
ticipation but participation in meaningful numbers. Thus, initiatives such as the
Missouri Institute of Mental Health Program in Consumer Studies and Training
(see www.mimh.edu/cstprogramarchive/PCS&T/), directed by Jean Campbell,
PhD, a researcher who has a psychiatric history, are vitally important.

Future Directions for CRO Practice

The influence of CROs is likely to continue to expand, leading to transformational
changes in the mental health system. The use of consumers as providers of mental
health services is a radical departure from the traditional mental health system. If
they continue to prove to be at least as effective in providing services as mental
health professionals, service providers who do not hire consumers risk facing legiti-
mate charges of discrimination.
As CROs grow and become increasingly popular, implementation support sys-
tems will need to enhance their capacity to ensure that CROs receiving government
funding are implemented in a high-quality manner. Technical assistance organiza-
tions are poised to play a critical role in supporting the successful dissemination of
CROs. Advocacy efforts are also critical to the successful dissemination of CROs
because policy makers need to be persuaded to designate their limited funding for
CROs rather than for nonconsumer services. The future for CROs is bright, but the
journey will undoubtedly be challenging.

Acknowledgments
This chapter integrates work from several previous studies that have been published
in collaboration with several supporting authors. We would like to thank Matt
126 Transformative Change & Consumer Participation

Shepherd, Scott Wituk, Greg Meissen, Ed Merkle, and Alicia Lucksted for their help
in conceptualizing, executing, and writing up these previously published works.
Excerpts used with kind permission from Springer Science+Business Media: Mental
health self-help:  Consumer and family initiatives, 2010, pp.  3–6, 12–13, 25–28,
159–162, Louis Brown and Scott Wituk (Eds.), Springer Science+Business Media,
LLC 2010.

References
Anderberg, K. (2011). Commitment criteria: 23 Women of Camarillo State Mental Hospital. Ventura,
CA: Anderberg.
Beers, C.W. (1908). A mind that found itself: An autobiography. New York: Longmans, Green, and
Company.
Borkman, T. J. (1999). Understanding self-help/mutual aid: Experiential learning in the commons. New
Brunswick, NJ: Rutgers University Press.
Bright, J. I., Baker, K. D., & Neimeyer, R. A. (1999). Professional and paraprofessional group treat-
ments for depression: A comparison of cognitive-behavioral and mutual support interventions.
Journal of Consulting and Clinical Psychology, 67(4), 491–501. doi:10.1037/0022-006x.67.4.491
Brown, L. D. (2009a). How people can benefit from mental health consumer-run organizations.
American Journal of Community Psychology, 43, 177–188.
Brown, L. D. (2009b). Making it sane: Using life history narratives to explore theory in a mental
health consumer-run organization. Qualitative Health Research, 19, 243–257.
Brown, L. D. (2012). Consumer-run mental health: Framework for recovery. New York: Springer.
Brown, L.  D.,  & Lucksted, A. (2010). Theoretical foundations of mental health self-help. In L.
D. Brown & S. A. Wituk (Eds.), Mental health self-help: Consumer and family initiatives (pp.
19–38). New York: Springer.
Brown, L. D., Shepherd, M. D., Merkle, E. C., Wituk, S. A., & Meissen, G. (2008). Understanding
how participation in a consumer-run organization relates to recovery. American Journal of
Community Psychology, 42, 167–178.
Brown, L.  D., Shepherd, M.  D., Wituk, S.  A.,  & Meissen, G. (2007). Goal achievement and the
accountability of consumer-run organizations. Journal of Behavioral Health Services and
Research, 34, 73–82.
Brown, L. D., Wituk, S. A., & Meissen, G. (2010). Consumer-run drop-in centers: Current state and
future directions. In L. D. Brown & S. A. Wituk (Eds.), Mental health self-help: Consumer and
family initiatives (pp. 155–168). New York: Springer.
Burti, L., Amaddeo, F., Ambrosi, M., Bonetto, C., Cristofalo, D., Ruggeri, M., & Tansella, M. (2005).
Does additional care provided by a consumer self-help group improve psychiatric outcome?
A study in an Italian community-based psychiatric service. Community Mental Health Journal,
41(6), 705–720.
Cambell, J. (2009). Federal multi-site study finds consumer-operated service programs are evidence-based
practices. Retreived from www.hhs.state.ne.us/Behavioral_Health/BHcommission/8-Jun-22-
09/F-Johnson-DrJeanCampbell-Study-ConsumerOperatedServices.pdf
Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric disabili-
ties. New York: Guilford Press.
Chamberlin, J. (1990). The ex-patients’ movement:  Where we’ve been and where we’re going.
Journal of Mind and Behavior, 11, 323–336.
COSP. (2004). Consumer-Operated Services Program (COSP) multisite research initiative overview and
preliminary findings. Retreived from www.power2u.org/downloads/COSPVAREPORT.pdf
Dickerson, F. B. (1998). Strategies that foster empowerment. Cognitive and Behavioral Practice, 5,
255–275.
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 127

Eiken, S.,  & Cambell, J. (2008). Medicaid coverage of peer support for people with mental ill-
ness: Available research and state examples. New York: Thompson Reuters. Retreived from www.
cms.gov/PromisingPractices/downloads/PeerSupport.pdf.
Estroff, S. E. (1985). Making it crazy: An ethnography of psychiatric clients in an American community.
Berkley, CA: University of California Press.
Fisher, D.,  & Spiro, L. (2010). Finding and using our voice:  How consumer/survivor advo-
cacy is transforming mental health care. In L. D.  Brown  & S. Wituk (Eds.), Mental health
self-help:  Consumer and family initiatives (pp. 213–233). New  York:  Springer Science  &
Business Media.
Goldstrom, I.  D., Campbell, J., Rogers, J.  A., Lambert, D.  B., Blacklow, B., Henderson, M.  J.,  &
Manderscheid, R.  W. (2006). National estimates for mental health mutual support groups,
self-help organizations, and consumer-operated services. Administration and Policy in Mental
Health and Mental Health Services Research, 33, 92–103.
Greenfield, T. K., Stoneking, B. C., Humphreys, K., Sundby, E., & Bond, J. (2008). A randomized
trial of a mental health consumer-managed alternative to civil commitment for acute psy-
chiatric crisis. American Journal of Community Psychology, 42(1-2), 135–144. doi:10.1007/
s10464-008-9180-1
Helgeson, V.  S.,  & Gottlieb, B.  H. (2000). Support groups. In S. Cohen, L. G.  Underwood  & B.
H. Gottlieb (Eds.), Social support measurement and intervention: A guide for health and social
scientists (pp. 221–245). Oxford, England: Oxford University Press.
Heidorn, P. S. (1993–94). Dr. Bernard Arons: Federal mental health official faces early test, voices
support for national movement. The Key, Fall-Winter, 3.
Holter, M. C., & Mowbray, C. T. (2005). Consumer-run drop-in centers: Program operations and
costs. Psychiatric Rehabilitation Journal, 28, 323–331.
Janzen, R., Nelson, G., Hausfather, N.,  & Ochocka, J. (2007). Capturing system level activities
and impacts of mental health consumer-run organizations. American Journal of Community
Psychology, 39(3–4), 287–299. doi:10.1007/s10464-007-9107-2
Janzen, R., Nelson, G., Trainor, J., & Ochocka, J. (2006). A longitudinal study of mental health con-
sumer/survivor initiatives: Part 4—Benefits beyond the self? A quantitative and qualitative
study of system-level activities and impacts. Journal of Community Psychology, 34(3), 285–303.
doi:10.1002/jcop.20100
Lieberman, M. A. (1993). Self-help groups. In H. I. Kaplan & B. J. Sadock (Eds.), Comprehensive
group psychotherapy (pp. 292–304). Baltimore, MD: Williams & Wilkins.
Ludwig, E. (2011). Pennsylvania moves toward integrating care for co-occurring conditions. People
First, Spring, 2.
Luks, A. (1991). The helping power of doing good: The health and spiritual benefits of helping others.
New York: Fawcett Columbine.
Maisel, A. (1946, May 6). Bedlam 1946: Most US mental hospitals are a shame and a disgrace. Life
Magazine. Retrieved from www.mnddc.org/parallels2/prologue/6a-bedlam/6a-bedlam.html.
Meissen, G. J., Gleason, D. F., & Embree, M. G. (1991). An assessment of the needs of mutual-help
groups. American Journal of Community Psychology, 19, 427–442.
Milofsky, C. (1988). Community organizations:  Studies in resource mobilization and exchange.
New York: Oxford University Press.
Mohr, W. K. (2004). Surfacing the life phases of a mental health support group. Qualitative Health
Research, 14, 61–77.
Mowbray, C. T., Greenfield, A., & Freddolino, P. P. (1992). An analysis of treatment services pro-
vided in group homes for adults labeled mentally ill. The Journal of Nervous and Mental Disease,
180, 551–559.
Mowbray, C. T., & Tan, C. (1993). Consumer-operated drop-in centers: Evaluation of operations
and impact. Journal of Mental Health Administration, 20, 8–19.
Nelson, G., Janzen, R., Ochocka, J., & Trainor, J. (2010). Participatory action research and evaluation
with mental health self-help initiatives: A theoretical framework. In L. D. Brown & S. A. Wituk
(Eds.), Mental health self-help: Consumer and family initiatives (pp. 39–60). New York: Springer.
128 Transformative Change & Consumer Participation

Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto, Canada: University of Toronto Press.
Nelson, G., Ochocka, J., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health con-
sumer/survivor initiatives: Part 2—A quantitative study of impacts of participation on new
members. Journal of Community Psychology, 34, 261–272.
Nelson, G., Walsh-Bowers, R., & Hall, G. B. (1998). Housing for psychiatric survivors: Values, pol-
icy, and research. Administration and Policy in Mental Health, 25, 55–62.
Norcross, J. C. (2000). Here comes the self-help revolution in mental heath. Psychotherapy: Theory,
Research, Practice, Training, 37(4), 370–377.
Packard, E. P. W. (1868). The prisoner’s hidden life, insane asylums revealed. Chicago: Kessinger
Publishing.
Powell, T. J., Hill, E. M., Warner, L., Yeaton, W., & Silk, K. R. (2000). Encouraging people with
mood disorders to attend a self-help group. Journal of Applied Social Psychology, 30, 2270–2288.
Recovery International. (2009). History of Recovery International. Retrieved from www.recovery-inc.
org/about/history.asp
Riessman, F. (1965). The “helper” therapy principle. Social Work, 10, 27–32.
Rissmiller, D. J., & Rissmiller, J. H. (2006). Evolution of the antipsychiatry movement into mental
health consumerism. Psychiatric Services, 57(6), 863–866. doi: 10.1176/appi.ps.57.6.863
Rivera, J. J., Sullivan, A. M., & Valenti, S. S. (2007). Adding consumer-providers to intensive case
management: Does it improve outcome? Psychiatric Services, 58(6), 802–809. doi: 10.1176/
appi.ps.58.6.802
Rogers, S. (1994). Staff recruitment is key task for growing self-help services. The Key, Summer-Fall, 1.
Rogers, S. (1998). Organize a demonstration to make your voice heard. The Key, Winter, 5.
Rogers, S. (2010). Consumer and consumer-supporter national Technical Assistance
Centers:  Helping the consumer movement grow and transform systems. In L. D.  Brown  &
S. Wituk (Eds.), Mental health self-help:  Consumer and family initiatives. (pp. 265–286).
New York: Springer Science & Business Media.
Rosenberg, P. P. (1984). Support groups: A special therapeutic entity. Small Group Behavior, 15,
173–186.
Sabin, J. E., & Daniels, N. (2003). Managed care: Strengthening the consumer voice in managed
care: VII. The Georgia peer specialist program. Psychiatric Services, 54(4), 497–498.
Salzer, M.  S., Schwenk, E.,  & Brusilovskiy, E. (2010). Certified peer specialist roles and activi-
ties: Results from a national survey. Psychiatric Services, 61(5), 520–523. doi: 10.1176/appi.
ps.61.5.520
Segal, S.  P.,  & Silverman, C.  J. (2002). Determinants of client outcomes in self-help agencies.
Psychiatric Services, 53, 304–309.
Segal, S. P., Silverman, C. J., & Temkin, T. L. (1993). Empowerment and self-help agency practice
for people with mental disabilities. Social Work, 38, 705–712.
Segal, S. P., Silverman, C. J., & Temkin, T. L. (2010). Self-help and community mental health agency
outcomes: A recovery- focused randomized controlled trial. Psychiatric Services, 61(9), 905–
910. doi: 10.1176/appi.ps.61.9.905
Sherman, S. R., Frenkel, E. R., & Newman, E. S. (1986). Community participation of mentally ill
adults in foster family care. Journal of Community Psychology, 14, 120–133.
Sisson, R. W., & Mallams, J. H. (1981). The use of systematic encouragement and community access
procedures to increase attendance at Alcoholic Anonymous and Al-Anon meetings. American
Journal of Drug and Alcohol Abuse, 8, 371–376.
Skovholt, T. M. (1974). The client as helper: A means to promote psychological growth. Counseling
Psychologist, 4, 58–64.
Smith, D. H. (2000). Grassroots associations. Thousand Oaks, CA: Sage.
Solomon, P. (2004). Peer support/peer provided services: Underlying processes, benefits, and criti-
cal ingredients. Psychiatric Rehabilitation Journal, 27, 392–401.
 Mental Health Consumer -R un O rgani z ati ons and Trans for mative Chang e 129

Solomon, P.,  & Draine, J. (1995). The efficacy of a consumer case management team:  2-year
outcomes of a randomized trial. Journal of Mental Health Administration, 22(2), 135–146.
doi: 10.1007/bf02518754
Solomon, P.,  & Draine, J. (1996). Service delivery differences between consumer and noncon-
sumer case managers in mental health. Research on Social Work Practice, 6(2), 193–207.
doi: 10.1177/104973159600600204
Teague, G. B., Johnsen, M., Rogers, J. A., & Schell, B. (2005). Research on consumer-operated service
programs: Effectiveness findings and policy implications of a large multi-site study. Retrieved March
10, 2009, from www.power2u.org/cosp.html
Toseland, R.  W.,  & Rossiter, C.  M. (1989). Group interventions to support family caregiv-
ers: A review and analysis. Gerontologist, 29, 438–448.
Wuthnow, R. (1994). Sharing the journey:  Support groups and America’s new quest for community.
New York: Free Press.
 PA RT F O U R

TRANSFORMATIVE CHANGE
IN SERVICES AND PRACTICES
 7

Wellness Recovery Action Planning

The Role of Wellness Promotion in a New Paradigm
of Community Mental Health

mary ellen copel and and jessica a . jonikas

They tell me I am “mentally ill,” that I inherited this, that something is
wrong with my genetics, that there is nothing I can do to help myself,
that I must do what they tell me, that I will not get better, that I will get
worse as I age, that my life, as I knew, it, is over. I know they are wrong,
that this is because of what happened to me, the things they don’t want
to talk about, that they don’t have time to talk about. There are other
people who have found their way out of this nightmare. Learning from
them what they have learned, and doing what they do, I too will find my
way out.
– Mary Ellen Copeland

The Wellness Recovery Action Plan, commonly referred to by its acronym “WRAP,”
is a wellness self-management program. Participants use it to identify internal and
external resources or tools for facilitating mental health recovery and then use
these tools to create their own, individualized plan for successful living (Copeland,
2010a; 2010b). WRAP was developed by people experiencing mental health chal-
lenges to maintain their wellness, organize their lives, work toward recovery, prevent
recurrence of troubling feelings and behaviors, and assure the best possible care in
the most difficult times. This chapter provides an overview of WRAP, emphasiz-
ing its conceptual foundation, history, key concepts, and studies that demonstrate
its effectiveness. Also discussed is how, as both a philosophy and a model, WRAP
reflects the principles of a new paradigm of mental health that promotes transfor-
mative change of individuals and systems.

133
134 Transformative Change in Services & Practices

Conceptual Foundation for WRAP

Although developed on the ground as a grassroots movement, WRAP has its con-
ceptual foundation both in the wellness and the self-determination movements.
As Sterling, von Esenwein, Tucker, Fricks, and Druss (2010) articulate, the origi-
nal concept of wellness largely grew out of a mid-century reaction to mainstream
medicine in which the presence or absence of illness, rather than personal and
social responsibility for wellness, had traditionally been the focus (Adler, 2007;
Jones, 2006). From the 1960s onward, emphasis on wellness broadened perspec-
tives by promoting an integrative approach that combined prevention, education,
and health promotion. In this sense, wellness was the result not only of adopting a
healthy lifestyle, but also of creating positive mental, emotional, social, spiritual, and
environmental conditions to support wellness (Mackey, 2000; Sterling et al., 2010).
As such, rather than building on skills in one area of health management, wellness
implied a constant and deliberate effort to maintain vitality and achieve maximal
well-being across multiple dimensions (Hoeger 1989; Sterling et al., 2010).
WRAP also has its conceptual foundation in the psychological theory of
self-determination (Deci & Ryan, 1985). In this framework, lasting health behav-
ior change occurs through personal motivation in which people experience a
sense of volition, self-initiation, and endorsement of their own behaviors. A series
of self-determination studies has demonstrated that when people are personally
and internally motivated to change, they are more likely to engage in new health
behaviors (Williams & Deci, 1996; Williams, Freedman, & Deci, 1998; Williams,
Grow, Freedman, Ryan, & Deci, 1996; Williams, Rodin, Ryan, Grolnick, & Deci,
1998). Importantly, internal or autonomous motivation is most likely to occur in
environments in which health care providers and supporters understand the per-
son’s perspectives, acknowledge his or her feelings, offer choices, and provide infor-
mation (Ryan & Deci, 2000). Also important to the change process is a belief in
one’s own competence because people who feel more competent in carrying out
a health-related behavior are more likely to engage in it (Bandura, 1997). In pro-
moting self-determination, WRAP facilitators are taught to acknowledge individual
beliefs, feelings, and choices while offering needed information to aid in the devel-
opment of personalized wellness management plans.
WRAP came onto the scene at a time when illness self-management was becom-
ing an increasingly important approach to the treatment of long-term medical con-
ditions such as asthma, diabetes, and heart disease (Lorig et al., 1999; 2001). Also
being explored at the time was the concept of “person-centered planning” for peo-
ple with developmental disabilities, which emphasized that a “service-defined” life
is a life not fully lived. As such, individualized goal planning should create meaning-
ful community connections and social roles for people with disabilities (O’Brien,
1989). Although mental health was, by and large, absent from these initiatives, the
 Wel lne s s R ecover y A c ti on Plan 135

people who developed WRAP believed that they, too, could identify their strengths,
engage in daily health promotion activities, access community resources, and
assume normative social roles to prevent recurrence of troubling symptoms while
promoting their recovery.

Components of a Wellness Recovery Action Plan

WRAP is a holistic program in which people learn self-management skills not only
by articulating what they need to achieve wellness, but also by learning the value
of key recovery concepts, personal rights, peer support, and nurturance of hope.
These concepts are taught throughout the process of developing one’s WRAP plan.
Indeed, the centerpiece of WRAP is a written (or oral, in cases of audio-recorded
planning for those with lower literacy or who prefer audio) plan of strategies the
person uses to maintain wellness and support his or her mental health recovery.
This plan consists of a series of sections that are developed in a specified order and
then directly used by that person as a guide for successful daily living. Critical to
this model’s success is emphasis on simple, safe, affordable strategies that people
use each day to maintain their emotional balance and physical health. The WRAP
plan is used in deference to those developed by care providers or other supporters
perceived to be more knowledgeable about the individual’s life than the person
him- or herself. The sections of a WRAP plan, in the order they are developed,
include (a) Wellness Toolbox, (b) Daily Maintenance Plan (c) Triggers, (d) Early
Warning Signs, (e) When Things Are Breaking Down, (f) Crisis Plan, and (g) Post
Crisis Plan.
A WRAP plan can be made either in a group setting or individually. WRAP
groups typically consist of 8–12 sessions during which time participants create
their plans while simultaneously learning key recovery and peer support concepts.
People also can prepare WRAP plans on their own, on the computer/Internet, or
with assistance from a supporter, such as a therapist or peer counselor. Additionally,
once a WRAP plan is developed, groups of peers often continue meeting to discuss
recovery and refine their WRAP plans as they learn and grow. In what follows, we
describe each component of a WRAP plan. A detailed understanding of the plan
provides insight into how the model promotes well-being by focusing on people’s
strengths, holistic health, and natural community resources.

Wellness Toolbox
WRAP planning begins with a list of simple, safe strategies that can be used to sup-
port wellness. The focus is not on people’s perceived limitations or deficits. Instead,
people are encouraged to create a Wellness Toolbox with what they need or can do
136 Transformative Change in Services & Practices

to support their own wellness or feel better when struggling emotionally or physi-
cally. The recovery resources identified in this section are drawn on to develop sub-
sequent sections of the WRAP plan.
When compiling a Wellness Toolbox, people first consider what they already
are doing to maintain wellness, along with what they feel they should do or what
they wish to try to foster their recovery. Emphasis is placed on people’s strengths
and on naturally occurring family/community resources. Many people report add-
ing to their list of Wellness Tools almost daily. Experience shows that the Wellness
Toolbox includes personal care strategies such as taking a daily shower, brushing
teeth or hair, or drinking eight glasses of water daily. Very often, it also includes
healthy living strategies such as taking medications, vitamins, and other supple-
ments; eating three meals per day; avoiding unhealthy snacking; seeking family/
peer support; and exercising. The Toolbox also may include creative outlets like
writing/journaling, playing a musical instrument, taking an art class, or sitting
beneath a tree outside. It also may include what needs to be avoided to maintain
personal wellness, such as alcohol, illicit drugs, large amounts of refined sugar, or
unsupportive/unsafe people.
Developing the Wellness Toolbox is often personally transformative. When first
starting out, people commonly develop a rather short list of tools. They tend not
to have had experience in identifying simple strategies to become and stay well.
However, as people work with their plan and collaborate with others (especially
their peers), the list typically begins to expand and change. For many who have
spent most of their lives convinced that what they experience is almost completely
outside of their control, development of the Toolbox marks their first awareness
that they can help themselves and effect positive changes in their own lives. Even
those who get only as far as developing the Wellness Toolbox (and not the rest of
the WRAP plan) begin to see their experiences in a new light and understand that
there are simple, safe, affirming ways to maintain wellness. WRAP participants often
reflect on the difference it would have made in their lives had they been told about
wellness self-management when they first started experiencing psychologically dis-
tressing emotions, rather than spending years learning to feel helpless and unable to
control their internal and external circumstances. Anecdotal evidence suggests that
this part of the WRAP plan also can be transformative for people’s families, care pro-
viders, and other supporters, as they begin to see the person in the role of capable
actor rather than helpless reactor.

Daily Maintenance Plan

After completing a Wellness Toolbox, participants move next to developing what
is called their Daily Maintenance Plan. This section of the plan includes three
parts: (a) What I’m Like When I’m Well, (b) What I Need to Do Every Day to Stay as
Well as Possible, and (c) What I Might Need to Do on Any Particular Day to Stay Well.
 Wel lne s s R ecover y A c ti on Plan 137

In the first part, What I’m Like When I’m Well, people consider what they feel
or behave like when they are well. People can choose to do this in either list or para-
graph form. Or, they might include a picture of themselves at a time when they felt
particularly happy and healthy. If they cannot remember feeling well (unfortunately,
not uncommon for many people in recovery), they describe what they think they
might feel like when well and healthy. This provides a framework for being able to
recognize wellness when they begin to achieve it.
Consideration of what it means to be well is personally transformative because
individuals are given occasion to remember their strengths and positive characteris-
tics as primary to their self-identity. This provides a contrast to the emphasis many
WRAP participants have felt on their limitations, problems, and past mistakes.
Indeed, this section acts as a touchstone when they are using the rest of the WRAP
plan. Additionally, when feeling badly or not coping adequately, people often can-
not remember what they are like when they are well. They can draw on this section
of their WRAP plan to remember and to regain equilibrium.
In the next part of the Daily Maintenance Plan, What I Need to Do Every Day
to Stay as Well as Possible, participants consider what they must do every day to
maintain wellness. This is a vital recovery and prevention activity. For this section,
people generally review their Wellness Toolbox and choose the tools they will use
daily to prevent mental health difficulties and promote health. This might include
30 minutes of exercise, taking medications, checking in with a spouse/partner, or
eating balanced meals. People are encouraged to keep the list as short and manage-
able as possible, so they can feasibly do these things each day and still have time for
their other responsibilities and activities (work, school, leisure time). Many people
find that using this part of the Daily Maintenance Plan helps them to feel far better
and more in control of their own lives.
For the last part of this section, What I Might Need to Do on Any Particular Day
to Stay Well, participants are asked to consider wellness tools that they can use regu-
larly but not necessarily daily. They are encouraged to consider in particular activi-
ties that, when neglected over time, will cause undue stress in their lives. Often,
this section includes grocery shopping, paying bills, vacuuming, making a dentist
appointment, calling the doctor, or checking in with a family member.

Triggers
With a picture of themselves when well and a set of daily tools, participants are
ready to tackle the tougher task of preventing the recurrence of troubling symp-
toms. These next sections of the WRAP plan can be emotionally difficult to create
but, nonetheless, soon become fundamental to participants’ personal wellness and
recovery.
First, participants are encouraged to consider and then plan for their personal
“triggers.” Triggers are defined as things or events that are unexpected and may not
138 Transformative Change in Services & Practices

happen often, but can cause stress (sometimes extreme). This, in turn, results in
a person feeling worse and, eventually, in a loss of personal control. Triggers are
individual and often idiosyncratic. What leads one person to become upset may
have no effect on someone else. Triggers may include someone else being rude or
disrespectful, certain sounds or smells, work or family stress, reminders of abuse or
neglect, or changes in routine. Participants are encouraged to make a comprehen-
sive list, so that they can go on to make realistic plans to avoid being triggered in a
variety of circumstances. At the same time, they are encouraged not to consider all
of the dreadful things that might happen, such as a serious accident, a severe illness
or injury, a destructive weather pattern, or loss of a home or someone special. At
times of situational crises like these, people are encouraged to use their wellness
tools more intensively.
Drawing on earlier sections of the WRAP plan, participants next use strate-
gies from their Wellness Toolbox to develop an action plan. The Triggers Action
Plan specifies what to do when triggered in order to avoid difficult reactions like
increased anxiety, anger, sadness, or insomnia. Positive actions might include
counting to 10, deep breathing, talking to someone about what happened, walking
around the block, or listening to a guided visualization exercise. Participants are
encouraged to make a thorough list of positive actions so that they have different
tools to use in different circumstances. Participants also are taught that they can rely
not only on their personalized Triggers Action Plan when something unexpected
or upsetting happens, but also on their Wellness Toolbox to cope with heightened
stress and emotions. By encouraging advance planning to manage triggers, WRAP
can be personally transformative, with its emphasis on taking immediate, positive
action to promote wellness and stability, rather than becoming overwhelmed and
waiting for a crisis to ensue.

Early Warning Signs

Participants turn next to considering “early warning signs” or signals that trou-
blesome feelings or symptoms may not be under control, even with use of one’s
daily wellness tools. Early warning signs include insomnia, feeling nervous with-
out knowing why, overeating or loss of appetite, avoiding social contact, and risky
behaviors such as purposely avoiding use of a seat belt when driving. When working
on this section of the plan, WRAP offers a contrast to the common message peo-
ple receive that their troubling symptoms are a sign of actual crisis and inability to
cope. Instead, WRAP teaches participants that there is still time at this stage to take
immediate action to regain emotional balance. To this end, after identifying their
unique early warning signs, participants create an Early Warning Signs Action Plan
designed to give them relief from their troubling symptoms and, ideally, prevent
even more difficult ones from arising. Action plans often include taking a “mental
health day” away from work and other responsibilities, going for a walk or a run,
 Wel lne s s R ecover y A c ti on Plan 139

working on an art project, spending extra time with a trusted supporter, or checking
in with a care provider. Both the Triggers Action Plan and the Early Warning Signs
Action Plan also can alter the person’s clinical and natural support systems by dem-
onstrating to all that triggers and early warning signs can be managed and that they
do not automatically constitute a crisis in need of acute response.

When Things Are Breaking Down

At this point, participants are asked to engage in the often challenging process of
thinking about times when they become unable to self-manage their emotional
health and wellness effectively. When developing this section, WRAP facilitators
offer acknowledgment of how difficult it is to consider the circumstances that led
to a crisis in the past, along with encouragement to view advance planning as an
empowerment tool. In other words, by planning in advance, participants make sure
that their preferences are known, even when they are struggling to maintain per-
sonal control.
Specifically for this section of their plan, participants make a list of their unique
signs or indicators that they are feeling much worse and need to engage more inten-
sively in wellness activities to regain self-control. Common signs include being per-
sistently sad, frequent crying, insomnia, hearing voices, having persistently racing
thoughts or pressured speech, spending money they don’t have, or being unable to
stay still. Thinking about this list, participants then draw on their Wellness Toolbox
to create a powerful, directive action plan that responds to these signs to prevent
a crisis. This action plan might include taking days off from work or other respon-
sibilities, asking a friend to stay over, avoiding alcohol, engaging in a creative or
spiritual activity, or seeing a peer counselor. This is a key time in a person’s recovery
process. Without immediate action, these troubling symptoms can escalate, leading
to the need for others to take over. WRAP participants are taught that even when
things are breaking down, there still is time to activate wellness activities to pre-
vent a full-blown crisis. Indeed, anecdotal evidence suggests that many WRAP users
have relied on this section of their plan to take immediate action on their own behalf
when feeling on the edge of a crisis, in order to regain emotional stability.

Crisis Plan
With this foundation in place, participants are ready to consider planning for times
of crisis. In WRAP, crisis is defined as an inability to be responsible for one’s self or
make appropriate, safe, healthy decisions. Crisis is not necessarily when people start
to feel very badly. Rather, crisis is the time when, in spite of their best use of well-
ness tools and planning, people lose the ability to make decisions that are safest or
healthiest for them. Not unexpectedly, this is the hardest section of a WRAP plan to
create because people are asked to remember when they have lost personal control
140 Transformative Change in Services & Practices

in the past, and all that ensued. Thus, participants are encouraged to take their time
when developing their Crisis Plan, to draw on trusted supporters for help, and to
use their Triggers Action Plan and Wellness Toolbox if thinking about their worst
times is extremely distressing.
The Crisis Plan contains specific elements. First, participants make a compre-
hensive and descriptive list of crisis signs that they need someone else to assume
responsibility for their care and decision making. Signs commonly include abusing
substances, being unable to think clearly, being persistently disrespectful or abusive
toward self or others, or engaging in compulsive behaviors (such as self-cutting).
Participants next list exactly whom they want to take over and support them
through a crisis, including names and contact information. A Crisis Plan also con-
tains detailed health care information, such as current and preferred medications,
allergies, health insurance plans, health care proxies, and other health management
information. One of the most empowering aspects of this section is planning for the
ability to stay at home (avoiding the hospital) when in crisis, if at all possible. This
part of the plan draws on peers, family, or other supporters who agree to stay over
and provide assistance. Related to this, participants list exactly what other people
can do to help during a crisis (e.g., care for pets, pay bills, retrieve the mail) and
what they should avoid doing (e.g., being critical, coercing decisions). Advance
crisis planning also includes listing chores that need to be done by someone else
during these times. Finally, the Crisis Plan concludes with a list of indicators that
supporters no longer need it because the participant is ready to resume control over
his or her life and decisions.
Although challenging to prepare, this part of WRAP planning is personally
empowering by keeping the person in control even during his or her worst times.
Copies of the Crisis Plan are given to the supporters who have been named in it to
carry out its directives. In some states in the United States, when signed by a doctor
and a lawyer, the Crisis Plan also can serve as an official Advance Directive.

Post Crisis Plan

A unique aspect of the WRAP plan is its focus on the typically difficult time follow-
ing a crisis—especially one that ended in psychiatric hospitalization—when a per-
son is trying to heal and regain balance. The Post Crisis Plan is developed differently
from other parts of the WRAP plan in that most of it is created as participants are
coming out of crisis and have the clearest picture of what is needed at that vulner-
able time. Participants are taught to familiarize themselves with their Post Crisis
Plan and fill in any information they can prior to a crisis occurring. Nonetheless,
the emphasis is on developing this plan after they have been in crisis to ensure
more direct relevance. Strategies in the Post Crisis Plan include making amends as
needed, paying bills or dealing with debt, reconnecting with family and/or children,
and considering whether the WRAP plan needs to be revised to be more effective.
 Wel lne s s R ecover y A c ti on Plan 141

When people have completed their WRAP plan—or even while they are still
working on it—they begin to review it daily, noting how they feel and what they
need to do to get better or stay well. As they become increasingly familiar with the
components of their plan, this review process takes increasingly less time. Eventually,
people learn what to do each day and how to respond to troubling symptoms with-
out referring to their plan. People who use and update their plans regularly report
that they not only have fewer difficult times, but also that these are not as severe or
lengthy as they once were. WRAP can empower people through an iterative process
by which they learn to successfully take control of their own health and wellness. At
the same time, WRAP can have a powerful effect on systems of care by helping pro-
fessionals view people with a history of mental health service use holistically and as
capable of engaging in daily wellness activities that can lead to maximal well-being
and independence.

History of WRAP
In the fields of behavioral health and health care, numerous models and approaches
are designed to help people obtain and sustain healthy lifestyles. In reflecting on
what makes WRAP stand out in its field, one needs to go back to where it all began.
Chapter co-author and lead creator of WRAP, Mary Ellen Copeland, reflects here
on her history and how what happened to her evolved into a self-management
model that resonates with people around the world.

In 1988, I began collecting data on how people who have been diagnosed
with a psychiatric illness cope on a day-to-day basis. I began these stud-
ies out of frustration with finding resolution to my own issues with mood
swings (diagnosed in those days as manic depression). These wild mood
fluctuations were taking over my life, and I thought that others with sim-
ilar issues might have found answers that would, at least, give me some
relief and allow me to support myself and live on my own. My findings
have led me to a career as a mental health recovery researcher, educator,
author, and advocate. I developed a survey and asked people like me to
fill it out. I didn’t really know the questions. I thought I would make them
open-ended, hoping if people wrote a lot, I could glean some answers and
then perhaps even figure out some new questions from their answers. I got
volunteers by putting short articles in various mental health newsletters
(Copeland, 2008).
The information I gathered from these surveys taught me how to stabi-
lize my own extreme moods, led to the publication of my first book by a
well-known national publisher (Copeland, 2001), and to numerous invita-
tions to speak at conferences and lead workshops. Over the years, more
142 Transformative Change in Services & Practices

and more states implemented programs based on the findings of these

early WRAP studies.
In 1997, I began working with a group of people with mental health
difficulties, family members, and care providers living and working in
northern Vermont. On the seventh of our eight all-day sessions together,
a woman stood up and said, “This is all well and good, but I  have been
in state hospitals across the country and I wouldn’t have any idea how to
organize these tools and strategies in my life.” In response to this challenge,
the group decided to spend its last planned day together, and then added
several additional days, developing the system that would become the
Wellness Recovery Action Plan (Copeland, 2010a).
It sounded great to me, so I  went home and, on a wintry afternoon,
developed one for myself. It moved me to a new level of wellness. I thought
it was so good that I decided to share it at a conference where I was leading
a workshop. There I was greeted by a group of people who were obviously
“worn” from studying chemical drug formulas and looking at brain slides.
I apprehensively presented WRAP. They loved it. The response was over-
whelmingly positive.
After that, whenever I led a workshop or spoke at a conference, people
just wanted to know about WRAP. That summer, I wrote a book reviewing
how to make a WRAP plan, now popularly known as the “WRAP Red Book”
(2010a) that has sold thousands of copies and is now translated into many
languages, including Spanish and Chinese. The Red Book also has been
revised to meet the specific needs of people with addictions (Copeland,
2011a), veterans and people in the military (Copeland, 2007), and even
children (Copeland, 2011b). There are WRAP CDs, DVDs, and a software
program. In addition, I developed a curriculum, the “WRAP Facilitator’s
Manual” (Copeland, 2010c), to teach people how to lead WRAP groups,
and I began holding several WRAP facilitator seminars each year.
In 2005, I set up a not-for-profit organization, the Copeland Center for
Wellness and Recovery, and held the first WRAP Conference. As of August
2011, more than 3,000 people have been trained as WRAP group facilita-
tors by the Copeland Center, while 200 have been trained as Advanced
Level Facilitators. While every state in the U.S. has publicly funded WRAP
programs, more than half also have large-scale comprehensive and inte-
grated WRAP initiatives. The model has begun to spread internationally,
with extensive training and program development occurring in Australia,
Canada, England, Hong Kong, Ireland, Japan, New Zealand, and Scotland.
In 2011, the Copeland Center hosted its first international conference that
brought together more than 600 people using WRAP and wellness strate-
gies, giving them an opportunity to learn from others and to share their
successes.
 Wel lne s s R ecover y A c ti on Plan 143

WRAP is special because it was developed by people struggling to maintain men-

tal well-being themselves. They were looking for answers that could have immediate
impact on their daily lives. They took seriously what they were doing well and what
they needed to learn. Nothing was too big or too small to be considered a wellness
tool, but the focus remained squarely on strengths, abilities, and what they were
already doing or could do to promote their own wellness.

Key Concepts, Values, and Ethics

WRAP is well-regarded for its strong adherence to an articulated framework of key
concepts, values, and ethics, even as the model is promulgated outward from grass-
roots to systems of care. Dr. Copeland’s early research (Copeland, 1991) showed
that mental health recovery is facilitated by a grounding in particular key con-
cepts: (a) hope, (b) personal responsibility, (c) education, (d) self-advocacy, and
(e) support. Over time, and after the development of WRAP, Dr. Copeland noticed
that there were certain values and ethics that seemed to be essential to the success of
WRAP. She shared them repeatedly with WRAP facilitators and users to determine
whether and how they were vital to its success. Through this process, a core group of
principles arose and are endorsed by the most successful WRAP facilitators, users,
and administrators. These core principles are described in the WRAP Facilitator
Training Manual (Copeland, 2010c) and are thoroughly reviewed in the training.
The facilitators use these core principles as a guide to leading WRAP groups where
individuals create their WRAP plans. The core principles are as follows:

1. WRAP supports the premise that there is hope, that people can get well, stay
well for long periods of time, and do the things they want to do with their lives.
2. Self-determination, personal responsibility, empowerment, and self-advocacy
are key aspects of all WRAP activities.
3. WRAP supports group decision making and personal sharing.
4. All people who work on and with WRAP are equals and must be treated at all
times with dignity, compassion, mutual respect, and unconditional high regard.
5. There is unconditional acceptance of everyone as they are—unique and spe-
cial individuals. This includes acceptance of diversity with relation to culture,
ethnicity, language, religion, race, gender, age, disability, sexual orientation, and
“readiness” issues.
6. With WRAP, there are “no limits” to recovery.
7. WRAP encourages people to explore choices and options and does not provide
simple, final answers.
8. All participation in WRAP-related activities is voluntary. All aspects of WRAP
are voluntary. WRAP cannot be mandated. The individuals who are developing
the WRAP decide when they will do it, how long they will take to do it, what
144 Transformative Change in Services & Practices

 it will include, parts they will complete and parts they will omit, who they will
share it with, and where they will keep it.
  9. It is understood that each person is the expert on her- or himself.
10. The focus is on individual strengths, not perceived deficits.
11. Clinical, medical, and diagnostic language is not used in WRAP.
12. The focus is on peers working together and learning from each other to increase
mutual understanding and knowledge while promoting wellness.
13. WRAP emphasizes strategies that are simple and safe for anyone and
de-emphasizes strategies that may have harmful effects.
14. WRAP is trauma-informed. Difficult feelings and behaviors are seen as normal
responses to traumatic circumstances and in the context of what is happening,
not as symptoms or a diagnosis.

Reflecting on what the key concepts have meant in his recovery, one WRAP facilita-
tor reflects,

When I look at defining WRAP, I always start with a question. This ques-
tion is the same question Mary Ellen asked when beginning her research.
How do people with challenges like this recover? Over the years, I have
defined the WRAP Lifestyle for me with the key recovery concepts. The
five key concepts look like this to me. I  search for hope when my very
mechanism for hope is shattered and is inadequate. The perspective I am
looking for is usually just beyond the horizon of my mind’s eye. It is when
I realize my potential for despair is unlimited that I realize that I can cre-
ate a big bang within my perspective. I realize, since I am the one to live
with my decisions, I have to take personal responsibility to try something
new. Learning about myself is hard enough. Remembering what I learned
is invaluable. That’s why I like the structure of WRAP—it helps me define
and categorize complex learning about my unique self. Once I categorize
my learning, I  can better define my needs. Only after I  have adequately
defined my needs can support enter into the equation. This kind of conver-
sation with my supporters is difficult and can be uncomfortable. However,
the empathy engendered by the values and ethics helps support this dia-
logue. In a nutshell, WRAP to me is about a lifestyle that supports having
the difficult conversations about what I need. (Eric C. Larson, Advanced
Level WRAP Facilitator)

The Evidence Base for WRAP

A growing body of research is exploring the effects of WRAP on people’s knowl-
edge, attitudes, and recovery outcomes. For example, one recent study sought to
 Wel lne s s R ecover y A c ti on Plan 145

determine the impact of WRAP on recovery knowledge and attitudes among par-
ticipants in four, one- to two-day workshops led by people in recovery from mental
health issues (Doughty, Tse, Duncan, & McIntyre, 2008). Workshop recruitment
was accomplished via extensive advertising in newspapers, newsletters, websites,
and e-mail. The workshops covered the material recommended by the Copeland
Center as described previously: the key WRAP concepts and step-by-step instruc-
tions for completing a WRAP plan. Workshop attendees included adult clients
and health and mental health care providers. Study personnel voluntarily enrolled
research participants at the beginning of the first WRAP meeting. The question-
naire included items assessing knowledge about WRAP, as well as attitudes about
whether people with mental health difficulties can assume personal responsibility
for their own treatment and wellness. The questionnaire was administered to study
participants immediately prior to and following their WRAP workshop. Among the
157 respondents included in the analysis, statistically significant improvement was
found in total recovery knowledge and attitudes following WRAP participation. No
significant differences were found between those with lived experience of mental
health issues and health professionals in degree of improvement. Additionally, the
two-day workshop did not appear to lead to a greater overall magnitude of change
in recovery knowledge/attitudes than the one-day session. This study supports the
use of WRAP workshops to positively impact knowledge and attitudes among peers
and providers about WRAP and the possibility of recovery from long-term mental
health problems.
In their quasi-experimental study, Fukui and colleagues (2011) sought to deter-
mine recovery outcomes among individuals who did and did not participate in a
WRAP group sponsored by their community mental health centers. WRAP sessions
followed the guidelines established by the Copeland Center and were co-led by one
staff person and one peer worker at five different agencies. A total of 58 experimen-
tal participants agreed to join the study after voluntarily attending the first session
of their agency’s WRAP group. To ensure adequate WRAP exposure, participants
included in the analysis attended 75% or more of the sessions. A total of 56 clients
matched on standard demographics to their counterparts in the WRAP group also
voluntarily agreed to be in the study. Standardized symptom and recovery question-
naires were administered in person to the WRAP study participants and by mail to
the comparison group. Results revealed that people who participated in the WRAP
groups had significantly reduced psychiatric symptoms and increased hopefulness,
suggesting that WRAP may help people better manage their troubling symptoms
and look toward a better future.
The leaders of two statewide WRAP initiatives also sought to determine the
effects of participation among adults in mental health recovery (Cook et al., 2010).
In both Vermont and Minnesota, a statewide consumer organization undertook to
deliver WRAP as part of its overall recovery initiatives. Using a pre/post design, 147
WRAP participants in Vermont and 234 in Minnesota completed a questionnaire
146 Transformative Change in Services & Practices

at the first and last sessions of their WRAP workshops. The questionnaires were
designed to assess changes in knowledge and attitudes about recovery and the com-
ponents of WRAP. This evaluation revealed that participation in a WRAP work-
shop led to statistically significant improvement on three dimensions of wellness
self-management: (a) positive attitudes, such as feeling able to assume responsibil-
ity for one’s own wellness; (b) knowledge of self-coping strategies, such as recogniz-
ing triggers; and (c) skills, such as following a daily plan for healthy living.
In a recent randomized controlled trial study, Cook et  al. (2011) sought to
assess the impact of WRAP on psychiatric symptoms, hopefulness, and quality of
life among 519 adults in mental recovery. Participants were recruited from com-
munity mental health settings in six Ohio communities and randomly assigned
to receive an eight-week WRAP class (experimental condition) or be on a WRAP
wait-list (control condition). WRAP sessions followed the guidelines established
by the Copeland Center and were co-led by trained and certified peers. All study
subjects were interviewed by researchers blind to study condition using a battery of
standardized assessments before, directly after, and six months following participa-
tion in the WRAP classes. Compared to controls, at the time of the second and third
interviews, WRAP participants reported significantly greater reduction in their
troubling psychiatric symptoms, significantly greater hopefulness, and enhanced
quality of life. This randomized controlled trial confirmed the value of including
WRAP as part of the recovery-oriented, evidence-based service packages currently
offered in public systems of care.
It is becoming more widely recognized that WRAP has a positive and sig-
nificant impact on recovery knowledge, attitudes, and outcomes. Indeed, due
to this growing evidence base, WRAP is now recognized in the U.S. Substance
Abuse and Mental Health Services Administration’s (SAMHSA) National
Registry of Evidence-Based Programs and Practices (http://nrepp.samhsa.gov/
ViewIntervention.aspx?id=208).

WRAP in the New Paradigm of Community

Mental Health
In my very first facilitator training, there was a case manager who whole-
heartedly embraced WRAP for himself first, and then, as something that
would be beneficial for his clients. I  have noticed this happening over
and over again. If a professional of any kind can recognize the benefits of
WRAP in their own lives, and understand the language of WRAP, they
can better communicate and understand the dynamics of people with
whom they interact. This is true transformation on a very human level
that leads to the kind of systems transformation that is positive and for-
ward thinking.
—Carol Bailey-Floyd, Advanced Level WRAP Facilitator
 Wel lne s s R ecover y A c ti on Plan 147

In considering where and how WRAP fits into a reformed community mental health
system, we reflect on Nelson, Lord, and Ochocka’s (2001) appeal for reform, as
described in the first chapter of this volume. We suggest that WRAP embodies these
authors’ key reform concepts as both a philosophy and a model. As such, WRAP
can serve as one grassroots example of how systems transformation might unfold at
the level of service and practice initiatives.
Taking first Nelson and colleagues’ value of “supporting community integration,”
we consider the fact that WRAP teaches people to choose simple, safe, and naturally
occurring wellness activities before those offered solely by mental health or health
professionals. Additionally, WRAP groups provide an informal support network,
and many peers continue to meet after their workshops have ended. Indeed, there
is now a new community of WRAP facilitators and users across the United States
and abroad. As Matthew Federici, executive director of the Copeland Center for
Wellness and Recovery, shares,

the work we do is based on a community of peers sharing what works and

doesn’t work, instead of theories or philosophies developed from academic
expertise or abstract and complex studies. This has made our community
of support accessible and relevant to people’s daily recovery in ways that
people have never experienced before.

WRAP illustrates the transformative value that simple lifestyle changes and
peer/community support are as important to recipients’ well-being as professional
treatment. Indeed, across systems, providers and supporters can be specifically
trained to look first to a person’s strengths, circle of support, and community when
developing life plans to meet personal goals (O’Brien & Lovett, 1992; O’Brien &
O’Brien, 2000). This does not mean that professional treatment and supports are
not important, of course, but that they need not be privileged over naturally occur-
ring peer, family, and community resources.
Next, bearing in mind Nelson and colleagues’ value of “social justice and access to
resources,” people are encouraged to identify activities and supports in their WRAP
plans that are available to everyone, whether or not they are recovering from mental
health issues. Importantly, by focusing individuals on what their communities have
to offer, WRAP encourages a culturally and socially relevant approach to achieving
emotional stability. As one example, a WRAP participant recently shared with one
of the authors how he learned to see the Puerto Rican restaurants and festivals in his
neighborhood as a personal wellness tool. By accessing these community resources,
he now mindfully utilizes his culture’s “comfort food,” music, and dance to support
his well-being. In this sense, WRAP taught him to view the ethnic resources in his
neighborhood as a source of emotional support and empowerment. WRAP serves
as an example of how interventions focused on personal health also can broaden
148 Transformative Change in Services & Practices

their scope to encompass naturally occurring community resources that foster full
inclusion of all people, regardless of ability or disability.
Finally, taking into account Nelson and colleagues’ value of “participation and
empowerment of stakeholders,” WRAP directly provides people with greater con-
trol over their own lives and services. Indeed, as a wellness intervention, its mis-
sion is to help people learn the value of facilitating emotional well-being rather than
striving only to avoid illness. As one WRAP user shares,

I once was a frequent patient at psychiatric hospitals. Care providers knew

me. I lived in housing for the elderly at the age of 45 because I was consid-
ered permanently disabled. I remember how happy I was to get disability
checks, so I didn’t have to ask my family for help with my expenses. Now,
over 20 years later, my life is very different. [After going through WRAP],
I  have a wonderful career and accomplishments I  am proud of. I  have
achieved things that have been of great benefit to others. I have a warm and
loving spouse. I can cover my own expenses, and more. Sometimes, I can
help out my adult children, who used to try and figure out how they could
support me. My life is filled with activities I enjoy. Now, every day for me is
a “WRAP” day. (Mary Ellen Copeland, PhD)

Perhaps most importantly, from an ecological perspective, many WRAP gradu-

ates have not only begun to manage their personal health, but to be change agents in
their own communities and systems. WRAP graduates are helping their peers and
providers see the value of health promotion/prevention over the traditional acute
response to the management of mental health problems. Take as one example the
experience of the State of Illinois (as shared by Nanette Larsen, Director, Illinois
Office of Consumer Affairs):

Many aspects of WRAP and recovery education have been foundational

to the ongoing process of creating a transformed public mental health
system in Illinois. For example, in 2008, our State undertook a thorough
revision of its Medicaid Rule, which governs the billing process for all
publicly funded mental health services. The language written into the rule
for key services, such as Community Support (Group or Individual) and
Psychosocial Rehabilitation, was specifically designed to reflect increased
opportunities for agencies to bill for WRAP and other services/supports
to promote daily wellness and recovery. Similar language now governs the
contract between the State and the provider agencies as well. Importantly,
the Administrative Services Organization, which is implementing the
State’s new financing system, was also required to provide administrative
support in the implementation of WRAP and other recovery initiatives
throughout the State. These strategies, approaches, and initiatives have laid
 Wel lne s s R ecover y A c ti on Plan 149

the foundation for the transformation of Illinois’ public mental health sys-
tem. WRAP has illustrated how a truly recovery-oriented service system,
facilitated in its development by authentic consumer leadership, offers the
greatest potential for enhancing the recovery of the persons it serves.

In other states, such as Pennsylvania, WRAP has been the foundation of systems
transformation that involved the training, certifying, and hiring of people in recov-
ery into the behavioral health workforce. As described by Matthew Federici, then
director of the Institute for Recovery and Community Integration:

The Institute for Recovery & Community Integration is a program of the

Mental Health Association of Southeastern Pennsylvania (MHASP). The
Institute was developed as part of a statewide initiative to transform the
public mental health system in Pennsylvania. One aspect of this initia-
tive was preparation and implementation of a Certified Peer Specialist
workforce. A  Certified Peer Specialist is someone who is in recovery, is
willing to disclose a history of mental health issues, and is willing to pro-
vide supportive services to others in recovery. Institute staff believed that
WRAP was foundational to their transformation effort, and the best tool
to prepare peer specialists as role models in the behavioral health work-
force. Thus, peers were trained as WRAP Facilitators (at the standard and
advanced levels). Combining certified peer training with WRAP facilitator
training has leveraged the State of Pennsylvania to provide peer support
services and WRAP with fidelity to the evidence-base in every region of
the State. Indeed, as a result of this intensive program, over the past five
years, the Institute has trained 500 WRAP Facilitators, and over 1,300
people in recovery have completed two-day WRAP workshops.

Across systems, WRAP is shifting the lens to allow recipients, providers, and sup-
porters to see the potential for recovery and to draw on people’s strengths and natural
resources to achieve it. WRAP also is transforming how traditional services are orga-
nized and funded. Other service and practice initiatives can learn from WRAP how
an intervention designed to change lives at the individual level can gain momentum
to change programs and systems as well. For WRAP, this was accomplished by staying
true to recovery values and ethics, its simple but powerful message of daily health pro-
motion, and its unconditional regard for all people regardless of ability or disability.

Caveats and Cautions

Although we celebrate the success of a model designed to promote wellness and
community integration, we also worry that WRAP will go the way of some service
150 Transformative Change in Services & Practices

models by becoming the end that systems strive for, rather than being the conduit
to a healthy and meaningful community life. We caution against the unintended
consequence that WRAP become mandated or viewed as an inexpensive and intui-
tive way to “fix people” across service systems. WRAP needs to function as a flex-
ible, organic (yet evidence-based) program that has the power to transform people,
programs, and systems.
We acknowledge as well that there is still much work to be done. WRAP will
continues to benefit from both effectiveness and efficacy research. Although it is
being used in many different countries, there is a dearth of research on whether
and how WRAP works across cultures specifically. We know of many cases of the
model being adopted by various US states and by other countries, as well as how it
has changed perspectives at those levels. Yet we lack rigorous research on the effect
WRAP may be having as an agent of ecological transformation.
Additionally, in spite of its widespread popularity, there are still many places in
which recovery approaches like WRAP are not known or understood. A phone call
recently received by this chapter’s lead author illustrates. After an argument with her
husband, a friend’s sister was unceremoniously handcuffed and treated roughly by
the police, left in an emergency room where her clothes were taken from her, and
later sent to a psychiatric facility. That facility was looking to find another place for
this woman to live. The facility said that the client was unwilling to take medications
and thus that they didn’t have anything else to offer her. Nothing but unwanted
medications to help a person cope with a domestic crisis and its aftermath? This
all-too-common response from an underresourced and outmoded system of care
serves as a reminder of the work that lies ahead not only for WRAP proponents, but
for all of us engaged in the transformation of public systems in the United States
and abroad.

References
Adler, R. C. (2007). Wellness can be achieved through understanding and addressing elements of
metabolic syndrome. Journal of Alternative & Complementary Medicine, 13(1), 11–12.
Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W.H. Freeman and Company.
Cook, J. A., Copeland, M. E., Corey, L., Buffington, E., Jonikas, J. A., Curtis, L. C., Grey, D. D., &
Nichols, W. H. (2010). Developing the evidence base for peer-led services: Changes among
participants following Wellness Recovery Action Plan (WRAP) education in two statewide
initiatives. Psychiatric Rehabilitation Journal, 34(2), 113–120.
Cook, J. A., Copeland, M. E., Jonikas, J. A., Hamilton, M., Razzano, L. A., Grey, D. D., Floyd, C. B.,
Hudson, W. B., Macfarlane, R. T., Carter, T. M., & Boyd, S. (2011). Results of a randomized
controlled trial of mental illness self-management using Wellness Recovery Action Planning.
Schizophrenia Bulletin. doi:10.1093/schbul/sbr012.
Copeland, M.  E. (1991). Learning to cope with depression and manic depression. Brattleboro,
VT: Peach Press.
Copeland, M.  E. (2001). The depression workbook:  A  guide to living with depression and manic
depression(2nd ed.). Oakland, CA: New Harbinger.
 Wel lne s s R ecover y A c ti on Plan 151

Copeland, M.  E. (2007). WRAP for veterans and people in the military. Dummerston, VT:  Peach
Press.
Copeland, M. E. (2008). The WRAP story. Dummerston, VT: Peach Press.
Copeland, M. E. (2010a). Wellness Recovery Action Plan (2nd ed.). Dummerston, VT: Peach Press.
Copeland, M. E. (2010b). WRAP plus. Dummerston, VT: Peach Press.
Copeland, M.  E. (2010c). Facilitator training manual:  Mental health recovery including Wellness
Recovery Action Planning(2nd ed.). Dummerston, VT: Peach Press.
Copeland, M. E. (2011a). WRAP for addictions (2nd ed.). Dummerston, VT: Peach Press.
Copeland, M. E. (2011b). WRAP for kids (2nd ed.). Dummerston, VT: Peach Press.
Deci, E.  L.,  & Ryan, R.  M. (1985). Intrinsic motivation and self-determination in human behavior.
New York: Plenum.
Doughty, C., Tse, S., Duncan, N.,  & McIntyre, L. (2008). The Wellness Recovery Action Plan
(WRAP): Workshop evaluation. Australasian Psychiatry, 16(6), 450–456.
Fukui, S., Starnino, V. R., Susana, M., Davidson, L. J., Cook, K., Rapp, C. A., & Gowdy, E. A. (2011).
Effect of Wellness Recovery Action Plan (WRAP) participation on psychiatric symptoms,
sense of hope, and recovery. Psychiatric Rehabilitation Journal, 34(3), 214–222.
Hoeger, W. W. R. (1989). Lifetime physical fitness and wellness. Englewood, CO: Morton.
Lorig, K.  R., Ritter, P., Stewart, A.  L., Sobel, D.  S., Brown, B.  W., Bandura, A., Gonzalez, V.  M.,
Laurent, D. D., & Holman, H. (2001). Chronic disease self-management program: Two-year
health status and health care utilization outcomes. Medical Care, 39(11), 1217–1223.
Lorig, K. R., Sobel, D. S., Stewart, A. L., Brown, B. W., Bandura, A., Ritter, P., Gonzalez, V. M., Laurent,
D., & Holman, H. (1999). Evidence suggesting that a chronic disease self-management pro-
gram can improve health status while reducing utilization and costs:  A  randomized trial.
Medical Care, 37, 5–14.
Jones, F. (2006). Strategies to enhance chronic disease self-management: How can we apply this to
stroke. Disability and Rehabilitation, 28(13–14), 841–847.
Mackey, S. (2000). Towards a definition of wellness. Australian Journal of Holistic Nursing, 7(2), 34–38.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community integration. Toronto: University of Toronto Press.
O’Brien, J. (1989). What’s worth working for? Leadership for better quality human services. Lithonia,
GA: Responsive Systems Associates.
O’Brien, J., & Lovett, H. (1992). Finding a way toward everyday lives: The contribution of person-centered
planning. Harrisburg, PA: Pennsylvania Office of Mental Retardation.
O’Brien, C. L., & O’Brien, J. (2000). The origins of person-centered planning: A community of practice
perspective. Lithonia, GA: Responsive Systems Associates.
Ryan, R. M., & Deci, E. L. (2000). Self-determination theory and the facilitation of intrinsic motiva-
tion, social development, and well-being. American Psychologist, 55(1), 68–78.
Sterling, E. W., von Esenwein, S. A., Tucker, S., Fricks, L., & Druss, B. G. (2010). Integrating well-
ness, recovery, and self-management for mental health consumers. Community Mental Health
Journal, 46, 130–138.
Williams G.  C.,  & Deci, E.  L. (1996). The National Cancer Institute Guidelines for Smoking
Cessation: Do they motivate quitting? Journal of General Internal Medicine, 11(Suppl. 1), 138.
Williams, G. C., Freedman, Z. R., & Deci, E. L. (1998). Supporting autonomy to motivate glucose
control in patients with diabetes. Diabetes Care, 21, 1644–1651.
Williams, G. C., Grow, V. M., Freedman, Z. R., Ryan, R. M., & Deci, E. L. (1996). Motivational pre-
dictors of weight loss and weight-loss maintenance. Journal of Personality & Social Psychology,
70, 115–126.
Williams, G. C., Rodin, G. C., Ryan, R. M., Grolnick, W. S., & Deci, E. L. (1998). Autonomous regu-
lation and adherence to long-term medical regimens in adult outpatients. Health Psychology,
17, 269–276.
 8

Defining the Competencies of Different

Stakeholders in a Transformed Mental
Health System
tim aubry and mary o’hagan

The purpose of this chapter is to present the competencies of service providers in

a transformed mental health system. In the first part of the chapter, we review the
published research on competencies of service providers working in community
mental health (CMH) systems. We follow up this review with a description of the
pathways leading to a transformed mental health system. Finally, the chapter con-
cludes with the implications of a transformed system on the competencies of ser-
vice providers, as well as other stakeholders.

Community Mental Health Competencies

In the wake of deinstitutionalization over the past four decades in mental health sys-
tems across the world, demands on mental health professionals have been extended
to support people with major mental distress to live in the community (Talbott,
2004). In addition, new service provider roles (i.e., community support worker,
peer support provider, employment specialist, addiction specialist) have been devel-
oped within community mental health programs such as Assertive Community
Treatment, Family Psychoeducation, Illness Management and Recovery, Integrated
Dual Disorder Treatment, and Supported Employment (McHugo et al., 2007).
In the context of these shifting demands on professionals and new roles in CMH,
a small amount of research on the “competencies” of community mental health ser-
vice providers appears in the published literature over the past 10 years. Moreover,
in response to these changes, several jurisdictions have elaborated mental health

152
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 153

workforce competency sets (New Zealand Mental Health Commission, 2001; NHS
Education for Scotland and Scottish Recovery Network, 2007; Ohio Department
of Health, 1999).
Competencies have been defined as the capacity of individuals in a particular
work position to apply knowledge and skills in an effective manner in the full range
of situations associated with that position (Lysaght & Altschuld, 2000). As well, it
has been suggested that the make-up of competencies include personal characteris-
tics such as values, beliefs, and attitudes that inform and guide an individual’s work.
The inclusion of personal characteristics to competencies is particularly important
in the context of adopting roles with significant interpersonal demands, such as
mental health service providers.

Review of Research on Competencies of Community Mental

Health Service Providers
In conducting our review of the published literature on competencies for service
providers in CMH, we entered the keywords “competencies,” “abilities,” “knowl-
edge,” “skills,” “attitude,” combined with “community mental health,” “mental health
services,” “mental health programs,” “integrated services” and “mental illness,”
“mental disorder,” “mental health,” “psychiatric symptoms,” “psychiatric disabili-
ties” in the PsycINFO, PubMed, and Web of Science databases. We also reviewed
the list of references in published articles that were found through the initial search
of databases.
Our search of the published literature yielded six studies that reported on research
identifying competencies of CMH service providers. Table 8.1 presents a descrip-
tion and the findings of these studies in chronological order and that range from
2000 to 2010. The identified studies were international in scope and involved data
that were collected in Canada, England, New Zealand, Scotland, and the United
States. Four of the studies identified a list of competencies for service providers in
CMH working with people with a diagnosis of severe mental illness (Aubry, Flynn,
Gerber, & Dostaler, 2005; Coursey et al., 2000a; 2000b; Lakeman, 2010; Young,
Forquer, Tran, Starzynski, & Shatkin, 2000). The fifth study reported on the devel-
opment of a measure of competencies of service providers working in CMH based
on the competencies defined in the Young et  al. (2000) study (Chinman et  al.,
2003).
In the earliest study, Coursey and his colleagues (2000a; 2000b) reported on
the findings of a panel of 28 experts in the field of mental health that included cli-
nicians, family members, and people who use mental health services balanced in
terms of gender and cultural background. The panel identified competencies for
service providers working with people with major mental distress in public outpa-
tient facilities and managed care systems. To accomplish this task, they reviewed the
previous empirical literature on mental health workforce competencies, standards
Table 8.1  Summary of Published Studies on Community Mental Health Competencies

Study Curtis et al. Young et al. (2000) Chinman et al. Aubry et al. (2005) Lakeman (2010) Russinova et al.
Objectives, (2000a; 2000b) (2003) (2011)
Methods,
and Findings
Objective Identify Define clinical Develop a Identify core Identify the most Empirically validate
competencies for competencies for self-assessment competencies for important mental a set of competencies
service providers service providers tool of community support health worker that promote recovery
in public sector of people with competencies providers with people competencies that from the perspective
and managed care severe mental for mental health with psychiatric are supportive of consumers,
outpatient services illness supporting service providers disabilities of mental health consumer-providers,
for people with empowerment and for people with recovery and providers
severe mental illness rehabilitation severe mental
illness
Method Panel of Multiple methods Paper-and-pencil Use of expert opinion Expert panel of Electronic survey
representatives from comprising of a survey completed survey, job activity 31 consumers of a national sample
different stakeholder literature review, by providers questionnaire, completed an of consumers,
groups focus groups, of services to critical incident, and online Delphi consumer-providers,
Review of empirical key informant persons with structured interviews survey on and providers on
literature on mental interviews, and severe mental with consumers and two different perceptions of
health workforce a national panel illness community support occasions to rate competencies as
competencies, of stakeholder providers to identify the importance facilitating recovery
standards of care, representatives competencies of competencies
practice guidelines, Rating of importance facilitating
outcome research, of competencies by recovery
and outcome consumers and support
measures workers using cart sort
methodology
(continued)
Table 8.1 Continued

Study Curtis et al. Young et al. (2000) Chinman et al. Aubry et al. (2005) Lakeman (2010) Russinova et al.
Objectives, (2000a; 2000b) (2003) (2011)
Methods,
and Findings
Findings 12 competencies 37 competencies 55-item scale 59 competencies Top five rated Agreement among
reflecting values, in seven domains: with good rated as being either competencies the three groups on
knowledge, and (1) consumer- psychometric absolutely necessary or focused on top-ten competencies
skills provider properties desirable and reflecting listening to and considered most
Higher order relationship, representing 15 personal attributes being respectful relevant to promoting
descriptions (2) assessment, domains of service including values and of consumers’ recovery that clustered
followed by more (3) rehabilitation and support attitudes, knowledge, point of view; conceptually in the
specific components & empowerment, delivery including and skills having and following areas:
of competencies (4) treatment, goal-setting, Majority of communicating (1) helping clients
Reflected a service (5) family & intensive case competencies required a belief in to cope with their
approach that was support systems, management, pre-employment consumers’ psychiatric condition,
consumer-focused, (6) social and family education, involved personal potential for (2) perceiving clients
evidence-based, cultural factors, skill advocacy, attributes recovery; and as separate from their
holistic, ethical, (7) resources and coordination consistent with a recognizing, symptoms and illness,
culturally coordination of of community consumer-centered respecting, (3) helping clients
competent, and care resources, approach and promoting value themselves,
individualized to medication Competencies to person’s resources (4) listening to clients
needs management, and be learned on the and capacity for in a nonjudgmental
evidence-based job comprised of recovery way, and (5) believing
practice knowledge and skills in clients’ ability to
specific to mental recover
health services
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 157

of care, practice guidelines, outcome research, and outcome measures. The work of
the panel produced a list of 12 core competencies reflecting the values, attitudes,
knowledge, and skills that are needed to deliver consumer-oriented services in the
public sector and managed care health care systems. Each competency provides a
general or higher level description followed by a second level specifying compo-
nents of the competency. In turn, each component is further elaborated through the
identification of skills, knowledge, and attitudes necessary for applying the compe-
tency (Coursey et al., 2000b). The core competencies identified by the adult panel
are intended to be relevant to the broad range of professions and roles working with
people with major mental distress1 in a wide variety of outpatient and community
contexts.
In another early study, Young and his colleagues (2000) conducted a literature
review and focus groups and interviews with a wide range of stakeholders to iden-
tify a set of clinical competencies that pertain to community-based care and facili-
tate the achievement of client outcomes, particularly as they relate to empowerment
and rehabilitation. Subsequently, representatives from the different stakeholder
groups participated on a national panel, reviewing this initial set of competencies
and reducing them to a list 37 competencies. Competencies were grouped into
seven domains that included knowledge and skills related to (a) developing a strong
working relationship with clients, (b) assessment, (c) rehabilitation, (d) treatment,
(e) involvement of family and other support systems in care, (f) integration of cul-
tural factors into care, and (g) coordination of community resources and care. The
panel of representatives of different stakeholder groups rated the competencies in
the areas of diagnostic assessment, medication treatment, and rehabilitation as hav-
ing the strongest effects on client outcomes.
Based on survey findings about these competencies, Young and his colleagues
(2000) reported that panel members perceived current clinicians working with
people with major mental distress living in the community as frequently lacking the
identified competencies. They indicated that, in terms of those competencies hav-
ing the strongest effect on outcomes, clinicians were unlikely to have the necessary
skills in the areas of client self-advocacy, rehabilitation, and functional assessment.
Using the competencies identified by Young et al. (2000), Chinman and his col-
leagues (2003) developed a survey-based tool for conducting a self-assessment of
competencies by service providers working in CMH. The instrument was intended
to be a quality-improvement tool for service providers, administrators, and research-
ers. In developing the Competency Assessment Instrument (CAI), Chinman et al.
(2003) chose the competencies that were considered central to recovery-oriented
care, easy to change, and not prevalent among service providers. The final version
of the CAI was made up of 55 items assessing 15 competency domains through
a combination of vignettes, Likert scales, and multiple choice items. To validate
the new instrument, Chinman et al. (2003) administered the CAI, the Recovery
Attitude Questionnaire, and the Client Optimism Scale to 341 providers of services
158 Transformative Change in Services & Practices

to clients with major mental distress located at 38 clinics in two western US states.
Most of the CAI scales for the different competency domains were shown to have
good internal consistency, test–retest reliability, and validity. In particular, ser-
vice providers with higher levels of education and more training had higher com-
petency scores. As well, the total score on the CAI correlated positively with the
Recovery Attitude Questionnaire and the Client Optimism Scale. Service provid-
ers had the lowest scores on scales related to working with families and delivering
community-based case management services.
In another study, Aubry et al. (2005) used multiple methods (i.e., expert opin-
ion survey, job activity questionnaire, critical incident technique, structured inter-
view) with people who use services and the staff of two CMH programs to define an
exhaustive list of competencies for community support providers. In a second stage
of the work, the researchers used card sort methodology to identify a list of core
competencies from the list developed in the first stage that were either “absolutely
necessary” or “desirable.” As well, the card sort process differentiated the competen-
cies according to those needed pre-employment versus those that could be learned
on the job. In developing their list of core competencies for community support
providers in CMH, Aubry and his colleagues (2005) categorized competencies as
being either (a) personal attributes (i.e., a personality trait or usual pattern of behav-
ior that contributes to providing effective community support), (b) knowledge (i.e.,
a set of information in a content area relevant to providing effective community sup-
port), or (c) skills (i.e., a set of behaviors that contribute to providing effective com-
munity support). Overall, Aubry et al. (2005) identified 59 core competencies that
were considered as being either absolutely necessary (n = 46) or desirable (n = 13)
for delivering effective community support.
Among the 17 competencies considered as being needed pre-employment, 11
were categorized as personal attributes involving values, attitudes, and personal
characteristics, that were absolutely necessary. These attributes were consistent
with adopting a person-centered approach to service delivery (e.g., shows sensitiv-
ity and respect for individual differences, demonstrates a positive attitude toward
people with psychiatric disabilities, adopts a caring and supportive attitude). A list
of 42 competencies was identified as to be learned on the job (i.e., within the first
six months). Of this group, 31 competencies were rated as absolutely necessary.
A majority of these competencies are focused on specific knowledge about mental
illness (n = 9) or skills related to implementing psychosocial interventions (n = 20).
In a recent study, Lakeman (2010) conducted an online Delphi survey with an
expert panel of 31 individuals with lived experience from seven different coun-
tries to identify competencies that facilitate recovery. The survey was made up of
103 competency statements related to mental health recovery drawn from lists of
competencies developed in New Zealand, Australia, and Scotland. The top-ranking
competencies emphasized service providers listening and respecting a person’s
perspective; communicating a belief in recovery; and promoting an individual’s
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 159

strengths, resourcefulness, and autonomy (Lakeman, 2010). Specifically, the high-

est rated competency involved service providers recognizing and supporting a
consumer’s resourcefulness. The second most highly rated competency referred to
service providers having the belief that recovery is possible. The third and fourth
highest rated competencies involved listening to and respecting the views and
knowledge of consumers. The fifth rated competency indicated the importance of
assisting consumers to help themselves.
Finally, in the most recently published study, Russinova, Rogers, Ellison,
and Lyass (2011) conducted a survey of perceptions of a set of 37  “hope and
empowerment promoting” competencies with a large national sample of mental
health consumers, consumer-providers, and providers. Survey participants were
asked to rate the importance of each of the competencies in facilitating recovery.
Results found that all of the competencies were judged as being important to the
recovery process by the three groups of respondents. There was agreement among
the three groups that the most important competency for facilitating recovery
was the capability to communicate a genuine respect for clients. As well, all of
the groups rated a similar set of competencies in the top ten in terms of their
relevance to recovery:  namely, having the ability to help clients develop skills
to cope and manage their psychiatric condition, perceiving clients as separate
from their diagnosis and symptoms, assisting clients to accept and value them-
selves, listening to clients in a nonjudgmental manner, and believing in clients’
potential for recovery. The researchers noted that their findings highlighted the
critical importance of establishing a strong therapeutic bond in the provision of
recovery-oriented services.

Summary of Research on Competencies to Date

Our review of the empirical literature on competencies for service providers work-
ing in CMH found a small number of studies conducted over the past decade yield-
ing a knowledge base that is at a relatively early stage of development. In line with
the diversity of service providers working in this area, the findings appeared to be
relevant and applicable to different disciplines.
A number of commonalities emerged in the findings reported in the five studies.
In particular, all of the studies included competencies that were functional in nature,
referring to a set of values, beliefs, attitudes, and personal attributes that enable ser-
vice providers to build strong working relationships with people using the service.
Examples of these functional competencies identified in the studies included engag-
ing people who use the service as collaborators in service planning and delivery
(Coursey et al., 2000a; 2000b); being able to build strong relationships with them
(Young et al., 2000); eliciting a person’s life experiences in a trusting atmosphere
(Chinman et  al., 2003); being sensitive, respectful, and understanding (Aubry
et al., 2005); having the self-awareness and skills to communicate respectfully and
160 Transformative Change in Services & Practices

develop good relationships with people using the service (Lakeman, 2010); and
showing a genuine respect for clients (Russinova et al., 2011).
Another common set of competencies identified in all of the studies reflected
technical knowledge and skills that related specifically to the delivery of different
aspects of CMH services such as assessment, treatment, rehabilitation, and coor-
dination of community resources. Examples of these “technical” competencies
involved knowledge and ability to use best practices of intervention and support
strategies (Coursey et al., 2000a; 2000b); being skilled in psychosocial/psychiatric
rehabilitation approaches (Young et al., 2000); being able to teach people symptom
and medication side-effect self-monitoring skills (Chinman et al., 2003); being able
to assist people to identify, access, and benefit from relevant community resources
(Aubry et al., 2005); having knowledge of the relationship between traumatic expe-
riences and mental health problems (Lakeman, 2010); and being able to educate
clients about their psychiatric condition (Russinova et al., 2011).
Although it was stated in different ways and with varying levels of emphasis, all of
the defined sets of competencies also recognized the importance of empowerment
of people using the service as a guiding principle in the delivery of services. Coursey
et al. (2000a; 2000b) described them in one of their 12 competencies as “full collab-
orators in service planning, delivery, and evaluation” (p. 373). Young et al. (2000)
and Chinman et al. (2003) define one of their competencies as being able to iden-
tify and respect the service preferences of people using the services. Aubry et al.
(2005) include in their set of competencies having the necessary values and atti-
tudes to adopt an approach to service delivery that is guided by the preferences and
needs of people using the service. Lakeman’s (2010) competencies include mul-
tiple references to the empowerment of people who use services (e.g., “recognizes
and supports the personal resourcefulness of people with mental illness”; “helps
the person develop self-belief, therefore promoting their ability to help themselves”
[p. 69]). Russinova and her colleagues (2011) had several competencies in their set
that referred to empowering consumers (e.g., “sharing decision-making with clients
about the services they receive”; “raising clients’ awareness that people with mental
illness deserve to be treated with dignity”; “helping clients learn how to stand up for
themselves” [pp. 180–181]).
Finally, all of the sets of competencies include knowledge and abilities related
to assisting people with major mental distress to develop and benefit from natural
or informal supports, including family. Coursey and his colleagues (2000a; 2000b)
referred to a competency that described being able to integrate family members and
other members of an individual’s social network into service delivery. Young et al.’s
(2000) list of competencies included three competencies that related to involving
family members in the treatment and rehabilitation process. The CAI developed
by Chinman et al. (2003) includes several items in domains that relate to deliver-
ing family education and working with the natural supports of people with major
mental distress. Aubry and his colleagues (2005) identified competencies relating
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 161

to knowledge of family issues related to major mental distress and skills associated
with assisting individuals to develop natural supports in the community, including
among family members. In contrast to the other sets of competencies that refer to
family supports and natural supports, Lakeman’s (2010) list of top-ranked compe-
tencies includes having an appreciation of the benefits of peer support. Although
there is no reference to working with families in their set of competencies, Russinova
et al. (2011) do have a competency that refers to helping clients identify with other
consumers who have done well in recovery.
The four studies conducted between 2000 and 2005 provided detailed lists of
competencies that were intended to cover all of the facets of the delivery of CMH
services, with a particular emphasis on clinical knowledge and skills (Aubry et al.,
2005; Chinman et al., 2003; Coursey et al., 2000a; 2000b; Young et al., 2000). As
such, they share much overlap, including the commonalities just described. In con-
trast, Lakeman (2010) and Russinova et al. (2011) provide a fresh perspective by
emphasizing a set of values, attitudes, and philosophy in the make-up of competen-
cies and tying them to the concept of recovery. The sets of competencies identi-
fied in this most recent work elaborate a set of service processes that will ultimately
facilitate recovery.
To the best of our knowledge, there is no evidence to date of the uptake of
the knowledge base created by research on competencies in CMH being used to
inform training programs. Moreover, there is only one study in which Chinman
et al.’s (2003) measure of competencies is used to evaluate the effectiveness of a
training program. Specifically, Young et al. (2005) used the CAI to measure the
effectiveness of a consumer-led training program for community support provid-
ers. The program included education, clinician–consumer dialogues, and ongoing
technical support of service delivery over the course of a year. Service providers
receiving the training showed greater gains in overall competency than did a com-
parison group of service providers not receiving the training. The study demon-
strates how an evaluation of competencies can be used as an outcome measure
of training programs. To date, the studies on competencies have involved mostly
unique and separate research efforts that have led to different sets of competencies,
albeit with much overlap. Only one set of competencies (Young et al., 2000) has
been operationalized into a measure on which psychometric properties were
determined (Chinman et al., 2003). There is no research to date that has validated
CMH service provider competencies by demonstrating their predictive relation-
ship to consumer outcomes.
In the context of the current state of knowledge on support provider competen-
cies in CMH, future research needs to develop and validate measures based on the
identified sets of competencies. As well, there is a need to integrate recovery values,
processes, and philosophy into service provider competencies in a manner simi-
lar to those identified by Lakeman (2010) and Russinova et al. (2011). Moreover,
the examination of competencies needs to be broadened to those required of all
162 Transformative Change in Services & Practices

stakeholders in the mental health system who are vital to assisting people with
major mental distress to move in the direction of recovery.
In addition to service providers, these stakeholders include family members,
friends, and individuals with lived experience of mental distress themselves. Most
of the focus in the current research on competencies centers on the values, knowl-
edge, and abilities facilitating an effective treatment and rehabilitative relationship
between service providers and people using services. Although these competencies
are important in a CMH system, they need to be broadened to include program
development and system-level advocacy knowledge and skills in order for service
providers to contribute to the much-needed systemic change and improvement that
are integral to a transformed mental health system.

Transformation: Picture and Pathways

What competencies will service providers need in a transformed mental health sys-
tem? To what extent do the competencies defined in the nascent research literature
fit with and facilitate the transformation of the mental health system? To answer
these questions, we need to develop a picture of what a transformed mental health
system looks like. Until we do this, we cannot really define the kinds of competen-
cies (values, knowledge, and skills) that will be required of the people who partici-
pate in that system.
In the traditional mental health system, the only stakeholders who need to be
competent are the service workforce, and their competencies were based on a par-
ticular knowledge base enabling them to deliver rehabilitation services in relative
isolation within the mental health system. This required especially a set of “clinical”
competencies. Our review of the competency research in CMH in this chapter did
find the presence of values guiding these rehabilitation services that are consonant
with working in a transformed and recovery-based system. However, the compe-
tencies are limited to paid service workers in the current mental health system, and
the identified values will need extension and further evolution to fit within a trans-
formed system.
In a transformed mental health system, as described earlier, there is a wider range
of stakeholders who play important roles that contribute toward the recovery of
individuals with lived experience of mental distress. This is in contrast to traditional
controlling and segregated systems that are dominated by a professional and bureau-
cratic elite. These stakeholders include community leaders, community members,
people who use services, their families, and the workforce working at the systemic,
management, or delivery levels. A transformed mental health system also calls for a
broader range of responses, a complex network of collaborative relationships, and
the absorption of multiple knowledge bases. The sum total of competencies needed
is much larger, although not all individuals or stakeholder groups need to acquire all
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 163

the competencies. These competencies include anything from respect for the expe-
rience of mental or emotional challenges through to leading one’s own recovery and
maintaining well-being, peer support, community development, building collabo-
ration and trust in individuals, and organization and systems change, to knowledge
of social determinants.

An Outline of a Transformed System

Various attempts have been made in recent years to create pictures of future ser-
vice systems (Compagni, Adams, & Daniels, 2006; Future Vision Coalition, 2008;
Mental Health Advocacy Coalition, 2008; Sainsbury Centre for Mental Health,
2006). Others have provided an intellectual underpinning for transformed services
(Bracken & Thomas, 2005; Lewis, 2006). There are also descriptions of alternative
services that may herald the appearance of future services (Stastny & Lehmann,
2007). In Chapters 1 and 2 of this book, Nelson et al. and Kloos et al. also create an
outline of a transformed mental health system.
In their various ways, all these writers acknowledge that to create deep transfor-
mation in services, we need to change some of our fundamental beliefs, particularly
the view that mental illness has no value or meaning. If mental illness is primar-
ily seen as brain pathology, the purpose of services is to correct brain pathology
through medical expertise and at times containment. If mental illness is seen as a
fully human but challenging state of being, one with multiple determinants and
consequences, then the purpose of services might be for service users to lead their
own recovery in a milieu underpinned by hope, self-determination, a broad range of
responses, and social inclusion.
The purpose of services determines everything that goes on in those ser-
vices, from human behavior to the systemic framework in which they operate.
Recovery-based services demand changes in human behavior and therefore com-
petencies (Davidson, O’Connell, Tandora, Styron, & Kangas, 2006). Whereas ser-
vice users were once expected to be passive recipients of expert interventions, in a
recovery-based service, they need to be active agents and leaders in their own recov-
ery. The people working in services are no longer expected to be “on top”; they need
to be “on tap.” Families, communities, opinion leaders, and politicians also need to
change (Mental Health Advocacy Coalition, 2008). A transformed recovery-based
system will favor “natural” environments, value service users’ subjectivity, work in
partnership with service users at all levels, and minimize or eliminate compulsory
interventions (Adams, Daniels, & Compagni, 2009).
All this leads to the services that are actually delivered to people using services.
The latest policy and evidence, as well as service user expectations, indicate that
we need a much broader range of services than are available to most people at
the moment (Adams et al., 2009; Kirby & Keon, 2006; President’s New Freedom
Commission on Mental Health, 2003). Most of these responses are not medical,
164 Transformative Change in Services & Practices

and few or any of them should take place in institutional or clinical settings. Service
navigation; peer support; recovery education; advocacy; personal assistance in
crisis; and support in education, employment, and housing, as well as some com-
plementary and talk therapies, must be as available as drug therapy presently is to
all people who experience mental illness (Davidson et  al., 2007; Mental Health
Advocacy Coalition, 2008).
The mental health system is also responsible for the delivery of prevention pro-
grams and policies particularly to populations at risk. In a transformed system,
prevention should no longer be confined to a branch of the health bureaucracy
but become a whole of government responsibility. Governments need to develop
social and economic policies that minimize trauma and inequality and optimize
well-being (Future Vision Coalition, 2008; Hogan, 2008). Governments need to
measure well-being in the population to help them create and monitor policy. The
delivery of mental health promotion should provide the awareness, information,
and skills needed by all citizens, including people with mental health problems,
to maximize their well-being (Future Vision Coalition, 2008; Jané-Llopis, Barry,
Hosman, & Patel, 2005). Society’s responses to people who have developed serious
mental distress need to be modified through comprehensive antidiscrimination and
social justice programs (Garfield, 2009).
The people and agencies that serve both individuals and populations need to
find new ways to work together, for example, through joint planning and pooled
funding; through co-locating different workforces among different teams, services,
and sectors; and through information sharing or shared use of communications
technologies for online or distance service provision (Adams et al., 2009). Many
services now delivered within the specialist mental health sector could be delivered
by primary health or social services, and in community organizations.
A transformed mental health system needs an overarching systemic framework.
Legislation that affects people with mental distress needs to focus on human rights
and foster equality. Policy and funding must span across sectors and push services
into the future rather than reinforcing the status quo. The development of research,
the workforce, and services needs to lead toward the recovery-based destination. At
the local, state, and national levels, there needs to be well-resourced, service user–
led oversight of services (Mental Health Advocacy Coalition, 2008).

Pathways to Reach the Destination

Once we have a destination, we can start to create a coherent network of pathways
to get there. We need to create pathways that offer the most leverage in relation
to the use of human and financial resources. If the following pathways were cre-
ated and sustained, we could reach the destination of transformed services. The fol-
lowing pathways, in summary form, are drawn from the emerging literature on the
transformation of mental health services (Adams et al., 2009; Davidson, O’Connell,
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 165

Tondora, Styron, & Kangas, 2006; Davidson et al., 2007; Future Vision Coalition,
2008; Garfield, 2009; Hogan, 2008; Kirby & Keon, 2006; Mental Health Advocacy
Coalition, 2008; President’s New Freedom Commission on Mental Health, 2003).

Core Services
  1. Develop and/or expand core services and associated workforces, so that they
are available to all who need them—peer support, recovery education, mobile
housing support, employment and education support, advocacy and talking
therapies.
  2. Recruit workers into services with lived experience and recovery values as well
as skills; train all workers in recovery competencies and link training to ongoing
coaching and performance appraisal.
  3. Replace all or most hospital services with services in people’s homes, online or
embedded in communities, including acute services.

Human Rights and Equality

  4. Work toward ending special mental health legislation, drastically reduce com-
pulsory interventions, and eliminate seclusion and restraint.
  5. Run ongoing recovery and human rights–based anti-discrimination and social
justice campaigns for the general public and target groups, led by service users.
  6. Advocate for a whole of government commitment to prevention and promo-
tion through minimizing inequality and trauma and optimizing and measuring
well-being.

Measures and Outcomes

  7. Develop new, robust evidence and measures through service user–led and
community-led participatory research and evaluation.
  8. Develop targets for increasing the participation of people with major mental
distress in the open labor market and in independent housing.

Systemic Drivers
  9. Develop structures, funding, and incentives for intersectoral cooperation and
integration in services.
10. Develop local stakeholder leadership groups, with a majority of service users
and families on them and resourced by staff, to identify the needs of their com-
munities, monitor services across sectors, and set directions for cross-sector
service development.

The last section of this chapter describes in broad terms the competencies
required by each of the stakeholder groups in a transformed mental health system.
166 Transformative Change in Services & Practices

Competencies of Stakeholders in a Transformed

Mental Health System
A transformed mental health system as described here demands a fundamen-
tal rethink on competencies. Because the philosophy and purpose of services are
changed, there is a need to offer people a broader range of services, resources, and
opportunities. Consequently, a broader range of stakeholders is required to take on
competent roles. In this context, we propose the following set of competencies for
the different actors in a transformed system.
The proposed competencies are informed by our review of the literature but go
beyond this work to correspond to the “picture” of and “pathways” toward a trans-
formed system. The proposed competencies are by no means an exhaustive list but
rather are intended to demonstrate some of the competencies of key stakeholders,
including consumers, family members, friends of consumers, and community lead-
ers, that would be needed in a transformed system.

Competencies for a New Philosophy and Purpose

In a transformed system, there is a need for mental health workers to adopt a phi-
losophy and purpose to their work that is collaborative, flexible, respectful, and
empowering to consumers. To a large extent, this philosophy and purpose are pres-
ent in the core values identified in the previously reviewed competency research
(Aubry et al., 2005; Chinman et al., 2003; Coursey et al., 2000a; 2000b; Lakeman,
2010; Russinova et al., 2011; Young et al., 2000). In defining these competencies,
we have also drawn from the Mental Health Advocacy Coalition (2008) and the
Future Vision Coalition (2008).
In particular, we propose the following generic competencies for all mental
health workers:

Mental Health Workers

• Understanding and accommodating a diverse range of views on mental
distress
• Understanding and showing respect for “lived experience” perspectives and
expertise
• Practicing trauma-informed care
• Working in partnership and with accountability to clients and their families
• Practicing zero tolerance of discrimination and abuse within services
• Preventing and developing alternatives to compulsory interventions
• Applying community development principles to empower clients, families, and
their communities to develop and use their own resources
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 167

Competencies for a Broader Range of Services

As well, mental health workers in a transformed system need to have the knowl-
edge and abilities to deliver a broad range of services. This knowledge and abilities
fall in line with many of the competencies identified in previous research (Aubry
et al., 2005; Chinman et al., 2003; Coursey et al., 2000a; 2000b; Lakeman, 2010;
Russinova et al., 2011; Young et al., 2000). As well, they correspond to the direc-
tions laid out by the Mental Health Advocacy Coalition (2008) and the Future
Vision Coalition (2008). Specifically, we propose the following competencies for
mental health workers:

Mental Health Workers

• Understanding clients in the context of their whole lives and environments
• Understanding the holistic determinants and consequences of mental distress
• Understanding and help to enhance the holistic determinants of recovery
• Creating flexible responses to cater for clients’ diversity
• Applying the principles of cooperation and integration when working with dif-
ferent services and community resources.
• Understanding and recognizing the unique role of new workforces such as peer
workers

Competencies for a Broader Range of Stakeholders

In a transformed mental health system, all stakeholders, including consumers, fam-
ily members, and community leaders, contribute to recovery-focused services and
supports. However, no research to date has examined the competencies of consum-
ers, family and friends of consumers, or community leaders as it relates to support-
ing people to build a life in the community. The competencies of these important
stakeholders can be argued as being just as important as mental health service pro-
viders. John McKnight (1995), in his well-known book entitled The Careless Society,
noted how professional helping services, especially health care and institutions,
have disabled individuals and communities from solving their own problems.
In the context of the early stages of deinstitutionalization in Canada, Trainor
and Church (1984) proposed a framework for support in the community for
people with lived experience of mental distress. The framework (see Figure 8.1),
which has evolved considerably over more than two decades with significant
input from consumers and families, identifies four groups of stakeholders (i.e.,
consumers, natural support networks, community organizations, and mental
health service providers) who make up the community resource base of consum-
ers (Trainor, Pomeroy,  & Pape, 1993). This resource base, presented against a
background of the basic elements of living in the community—namely, housing,
168 Transformative Change in Services & Practices

Community Resource Base

Housing

Self -help and

Consumer Family & Friends
Organizations

Income Person Work

Generic
Mental Health
Community Services
Services
& Groups

Education

Figure 8.1  Community Resource Base for Persons with Severe and Persistent Mental Illness.
From Trainor, Pomeroy, & Pape, 1993; reprinted with permission from the Canadian Mental Health
Association.

work, education, and income—reflects the important role of players other than
mental health service providers in fostering recovery for people with significant
mental distress. With this in mind, we propose the following competencies for the
different stakeholders:

Individuals Leading Their Own Recovery

To be active agents and leaders in their own recovery, individuals need to become
competent at sustaining a positive self-image, managing their lives and their rela-
tionships, and using the resources that are useful to them (Davidson et al., 2007;
O’Hagan, 2009). Consumer competencies that will facilitate their recovery
include:

• Resolving internalized stigma and recognizing strengths and expertise

• Skills in managing self
• Knowledge of service options, treatments, and rights
• Knowledge of how to get the most out of services
• Positive communication and assertiveness skills
• Negotiation and collaboration skills

Families and Friends Supporting Individuals with Mental Distress

Families and friends also need to become competent at sustaining hope for the per-
son with mental distress, supporting their recovery and understanding that they
may be on their own separate recovery journey. Moreover, they need to know how
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 169

to find and negotiate resources and supports for themselves and with the person in
their lives who experiences mental distress:

• Managing and changing negative emotions in relation to consumer

• Knowledge of how to support consumer in leading their own recovery
• Skills in leading own recovery as family member
• Knowledge of service options, treatments, and rights
• Knowledge of how to get the most out of services
• Positive communication and assertiveness skills
• Negotiation and collaboration skills

People with Lived Experience and Families Participating at the Service or System Level
Some people with lived experience and some family members participate in the
planning, development, delivery, and evaluation of services and systems in a paid
or voluntary capacity, as committee members, educators, peer support workers,
researchers, and advisors, to name a few. In addition to the generic competencies
needed for all these roles, people with lived experience and families need to develop
competencies to enable them to amplify their voice and advance the interests of
their stakeholder group (O’Hagan, 2009). For instance, they need:

Personal Development
• Understanding and learning from their own distress and recovery
• Skills in self-care in life and at work
• Self-awareness and reflective practice

Knowledge Development
• Understanding of consumer/survivor movement and/or family movement values
• Familiarity with recovery knowledge
• Knowledge of helping systems
• Knowledge of critical perspectives in mental health

Skills Development
• Using self-disclosure for the benefit of others
• Encouraging others to use their strengths and resources
• Enabling consensus or autonomous decision making
• Relating to diverse groups of consumers/survivors and families
• Ability to be nonjudgmental about other people’s realities

Community Leaders
Community leaders include politicians, media commentators, and opinion leaders.
They articulate community views on mental health issues. The mental health system
170 Transformative Change in Services & Practices

cannot undergo transformation without the support of these leaders who need to
be competent at the following:

• Understanding mental health issues from human rights perspective

• Understanding that people do recover from major mental distress
• Understanding that people with mental distress have much the same needs and
aspirations as other citizens
• Practicing zero tolerance for discrimination
• Having the ability to make supportive public statements
• Having the ability to “come out” as a person with lived experience (if applicable)

As shown in Table 8.2, some of the transformative competencies we describe for

mental health workers already appear in some competency statements presented
in the research literature. In particular, these include values, knowledge, and skills
of mental health workers that relate to the philosophy and purpose behind trans-
formed services, notably competencies promoting consumer-focused services,
focusing on working with families, fostering consumer empowerment, and deliver-
ing evidence-based practices (Aubry et al., 2005; Chinman et al., 2003; Coursey
et al., 2000a; 2000b; Lakeman, 2010; Russinova et al., 2011; Young et al., 2000).
As well, a number of competencies of mental health workers identified in previ-
ous research are in line with those transformative competencies that will facilitate
the development and delivery of a broader range of services to consumers. These
include competencies needed for delivering different types of community services,
promoting consumers’ resources and capacity for recovery, and coordinating com-
munity resources (Aubry et al., 2005; Chinman et al., 2003; Coursey et al., 2000a;
2000b; Lakeman, 2010; Russinova et al., 2011; Young et al., 2000).
No research to date has examined the competencies of consumers, family and
friends of consumers, or community leaders as it relates to supporting people to
build a life in the community. In a transformed system, the competencies of these
important stakeholders can be argued as being just as important as mental health
service providers.
In a transformed system, mental health workers are only one of the key pieces
making up the pool of community resources for people with lived experience
(Pomeroy, Trainor,  & Pape, 2002). Moreover, the role of mental health workers
needs to extend beyond delivering direct services in order to assist consumers to
develop their community resource base to its fullest potential. In this vein, mental
health workers need to be equipped with competencies that extend beyond tradi-
tional clinical roles and enable them to take on the roles of resource collaborators,
program developers and evaluators, community developer, and social change agents
and in facilitating the development of competencies in other stakeholders. These
roles have been advocated as being central to the work of community psychologists
(Dalton, Elias, & Wandersman, 2001; Nelson & Prilletensky, 2010; Trickett, 2009;
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m
Table 8.2  Comparison of Transformative Competencies and Competencies
Identified in Existing Research
Transformative Competencies
Competencies for a New Philosophy
and Purpose
• Mental health workers
•U  nderstand and accommodate a diverse
range of views on mental distress
• Understand and show respect for “lived
experience” perspectives and expertise
• Practice trauma-informed care
• Work in partnership and with
accountability to clients and their families
• Practice zero tolerance of discrimination
and abuse within services
• Prevent and develop alternatives to
compulsory interventions
• Apply community development
principles to empower clients, families
and their communities to develop and use
their own resources
Competencies for a Broader Range
of Services
• Mental health workers
• Understand clients in the context of their
whole lives and environments
• Understand the holistic determinants and
consequences of mental distress
• Understand and help to enhance the
holistic determinants of recovery
• Create flexible responses to cater for
clients’ diversity
• Understand and apply the principles
of cooperation and integration when
working with different services and
community resources
• Understand and recognize the unique role
of new workforces such as peer workers
171
Competencies Identified in the
Existing Research
• Competencies that promote
a service approach that is
relationship-based and
consumer-focused (Aubry et al.,
2005; Coursey et al., 2000a; 2000b;
Lakeman, 2010; Russinova et al.,
2011; Young et al., 2000)
• Competencies that focus on
working with families of consumers
(Aubry et al., 2005; Chinman et al.,
2003; Young et al., 2000)
• Competencies that foster consumer
empowerment (Aubry et al., 2005;
Coursey et al., 2000a; 2000b; Lakeman,
2010; Russinova et al., 2011)
• Competencies in delivering
evidence-based practices (Chinman
et al., 2003; Coursey et al., 2000a;
2000b)
• Knowledge and skills needed
for delivering a wide range of
community services (Aubry et al.,
2005; Coursey et al., 2000a; 2000b;
Chinman et al., 2003; Lakeman,
2010; Young et al., 2000)
• Competencies promoting person’s
resources and capacity for recovery
(Lakeman, 2010; Russinova et al.,
2011)
• Competencies related to
coordination of community
resources (Aubry et al., 2005;
Chinman et al., 2003; Russinova
et al., 2011; Young et al., 2000)
(continued)
172 Transformative Change in Services & Practices

Table 8.2 Continued
Transformative Competencies Competencies Identified in the
Existing Research
Competencies for a Broader Range of
Stakeholders
• Individual consumers leading their
own recovery
• Resolve internalized stigma and recognize
strengths and expertise
• Skills in managing self
• Knowledge of service options, treatments
and rights
• Knowledge of how to get the most out of
services
• Positive communication and assertiveness
skills
• Negotiation and collaboration skills
• Families and friends supporting
individual consumers
• Managing and changing negative
emotions in relation to consumer
• Knowledge of how to support consumer
lead their own recovery
• Skills in leading own recovery as family
member
• Knowledge of service options, treatments
and rights
• Knowledge of how to get the most out of
services
• Positive communication and assertiveness
skills
• Negotiation and collaboration skills
• Consumers and families participating
at the service or system level
Personal development
• Understanding our own distress and
recovery
• Reframing our stories
• Skills in self-care in life and at work
• Self awareness and reflective practice
(continued)
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 173

Table 8.2 Continued
Transformative Competencies Competencies Identified in the
Existing Research
Knowledge development
• Understanding of consumer movement
values
• Familiarity with recovery knowledge
• Knowledge of helping systems
• Critical perspectives in mental health
Skills development
• Encourage others to use their strengths &
resources
• Enable consensus or autonomous
decision-making
• Relate to diverse groups of users and
survivors
• Non-judgmental about other people’s
realities
• Community leaders
• Understand mental health issues from
human rights perspective
• Understand wellbeing and recovery
• Practice zero tolerance of discrimination
• Ability to make supportive public
statements
• Ability to “come out” as a person with
lived experience (if applicable)

Tyler, Pargament, & Gatz, 1983). To achieve a transformed mental health system,

it will be important that training within the different mental health disciplines pre-
pares service providers to assume these different roles.

Conclusion
As indicated by our proposed competencies, a transformed mental health system
will require a major retooling of mental health workers and a revising of professional
training programs in mental health in such areas as psychiatry, psychology, social
work, occupational therapy, and psychiatric nursing. In particular, the training will
need to prepare mental health workers to move beyond traditional clinical roles and
174 Transformative Change in Services & Practices

interventions and become collaborative partners with consumers and communities

in helping to facilitate social justice and pathways to recovery.
Just as important as the training of mental health workers is a need in a trans-
formed mental health system to equip family members, community leaders, and the
general public with the necessary competencies to support consumers on their path
to recovery and full social inclusion. As described in our review of the published
literature, research on competencies has focused exclusively on those required by
mental health workers, assuming a one-way process of delivering services and sup-
ports by them to consumers, family members, and other members of consumers’
social network. A much broader view of competencies involving of all of the stake-
holders is required in a transformed mental health system.
To a large extent, the transformation of the mental health system can only be
accomplished with the transformation of the competencies of its stakeholders.
These competencies need to include values, beliefs, attitudes, knowledge, abilities,
and an unyielding commitment to transforming the system so that it promotes
self-determination, recovery, and social justice. Both the training of stakeholders in
this direction and the transformation of the mental health system will need to occur
simultaneously. Research on competencies can play a role in identifying the range
of competencies required in a transformed system. Future research in this area can
build on the methods and findings to date.

Acknowledgments
We gratefully acknowledge the assistance of Katie Greig with the literature search
conducted for this chapter.

Note
1. The term “major mental distress” is used throughout the chapter as an alternative to “severe
and persistent mental illness.”

References
Adams, N., Daniels, A., & Compagni, A. (2009). International pathways to mental health transfor-
mation. International Journal of Mental Health, 38, 30–45.
Aubry, T. D., Flynn, R. J., Gerber, G., & Dostaler, T. (2005). Identifying the core competencies of
community support providers working with people with psychiatric disabilities. Psychiatric
Rehabilitation Journal, 28(4), 346–353.
Bracken, P., & Thomas, P. (2005). Postpsychiatry: Mental health in a postmodern world. New York:
Oxford University Press.
 Stak ehold er Competencie s in a Trans for med Me ntal Health Syste m 175

Chinman, M., Young, A. S., Rowe, M., Forquer, S., Knight, E., & Miller, A. (2003). An instrument
to assess competencies of providers treating severe mental illness. Mental Health Services
Research, 2, 97–108.
Compagni, A., Adams, N.,  & Daniels, A. (2006). International pathways to mental health system
transformation: Strategies and challenges. A project of the California Institute for Mental Health.
Sacramento, CA: California Institute for Mental Health.
Coursey, R. D., Curtis, L., Marsh, D. T., Campbell, J., Harding, C., Spaniol, L., & Zahniser, J. (2000a).
Competencies for direct service staff members who work with adults with severe mental ill-
nesses in outpatient public mental health/managed care systems. Psychiatric Rehabilitation,
23(4), 370–377.
Coursey, R. D., Curtis, L., Marsh, D. T., Campbell, J., Harding, C., Spaniol, L., & Zahniser, J. (2000b).
Competencies for direct service staff members who work with adults with severe mental ill-
nesses: Specific knowledge, attitudes, skills and bibliography. Psychiatric Rehabilitation, 23(4),
378–392.
Dalton, J., Elias, M., & Wandersman, A. (2001). Community psychology: Linking individuals and com-
munities. Toronto: Nelson Thomson Learning.
Davidson, L., Kirk, T., Rockholz, P., Tondora, J., O’Connell, M. J., & Evans, A. C. (2007). Creating a
recovery-oriented system of behavioral health care: Moving from concept to reality. Psychiatric
Rehabilitation Journal, 31, 23–31.
Davidson, L., O’Connell, M., Tondora, J., Styron, T., & Kangas, K. (2006). The top ten concerns
about recovery encountered in mental health system transformation. Psychiatric Services, 57,
640–645.
Future Vision Coalition (The). (2008). A new vision for mental health. Discussion paper. London: The
Future Vision Coalition.
Garfield, R. L. (2009). Mental health policy development in the states: The piecemeal nature of
transformational change. Psychiatric Services, 60, 1329–1335.
Hogan, M.  F. (2008). Transforming mental health care:  Realities, priorities, and prospects.
Psychiatric Clinics of North America, 31, 1–9.
Jané-Llopis, E., Barry, M., Hosman, C., & Patel, V. (2005). Mental health promotion works: A review.
Promotion & Education, 12, 9–25.
Kirby, M. J. L., & Keon, W. J. (2006). Out of the shadows at last: Transforming mental health, mental
illness and addiction services in Canada. Ottawa: Standing Senate Committee on Social Affairs,
Science and Technology.
Lakeman, R. (2010). Mental health recovery competencies for mental health workers: A Delphi
study. Journal of Mental Health, 1, 62–74.
Lewis, B. (2006). Moving beyond Prozac, DSM, and the new psychiatry: The birth of postpsychiatry.
Ann Arbor, MI: University of Michigan Press.
Lysaght, R. M., & Altschuld, J. W. (2000). Beyond initial certification—the assessment and mainte-
nance of competency in professions. Evaluation and Program Planning, 23, 95–104.
McHugo, G. J., Drake, R. E., Whitley, R., Bond, G., Campbell, K., Rapp, C. A., & Finnerty, M. T.
(2007). Fidelity outcomes in the national Implementing Evidence-Based Practices project.
Psychiatric Services, 58, 1279–1284.
McKnight, J. (1995). The careless society: Community and its counterfeits. New York: Basic Books.
Mental Health Advocacy Coalition. (2008). Destination:  Recovery:  Te Ūnga ki Uta:  Te Oranga.
Auckland, NZ:  Mental Health Foundation of New Zealand. Retrieved July 21, 2011, from
www.mentalhealth.org.nz/file/downloads/pdf/Destination%20Recovery_FINAL_low%20
res.pdf
Nelson, G., & Prilletensky, I. (2010). Community psychology: In pursuit of liberation and well-being.
New York: Palgrave MacMillan.
NHS Education for Scotland and Scottish Recovery Network. (2007). Realising recovery: A national
framework for learning and training in recovery focused practice. Retrieved December 20, 2011,
from www.scottishrecovery.net/Realising-Recovery/supporting-resources.html
176 Transformative Change in Services & Practices

New Zealand Mental Health Commission. (2001). Recovery competencies for New Zealand mental
health workers. Retrieved December 20, 2011, from fhttp:/www.maryohagan.com/resources/
Text_Files/Recovery%20Cometencies%20O’Hagan.pd
O’Hagan, M. (2009). Leadership for empowerment and equality: A proposed model for mental
health user/survivor leadership. International Journal of Leadership in Public Services, 5(4),
1–12.
Ohio Department of Mental Health. (1999). Emerging best practices in mental health recovery process.
Retrieved December 20, 2011, from www.mhrecovery.com/best_practices.htm.
Pomeroy, E., Trainor, J., & Pape, B. (2002). Citizens shaping policy: The Canadian Mental Health
Association’s framework for support project. Canadian Psychology, 43(1), 11–20.
President’s New Freedom Commission on Mental Health. (2003). Achieving the prom-
ise: Transforming mental health care in America. Final report (DHHS Publication No. SMA-03-
3832). Rockville, MD: Author.
Russinova, Z., Rogers, S., Ellison, M.  L.,  & Lyass, A. (2011). Recovery-promoting professional
competencies perspectives of mental health consumers, consumer-providers, and providers.
Psychiatric Rehabilitation Journal, 34, 177–185.
Sainsbury Centre for Mental Health. (2006). The future of mental health: A vision for 2015. Sainsbury,
UK: Author.
Stastny, P., & Lehmann, P. (2007). Alternatives beyond psychiatry. Berlin: Peter Lehmann Publishing.
Talbott, J. A. (2004). Deinstitutionalization: Avoiding the disasters of the past. Psychiatric Services,
55, 1112–1115.
Trainor, J.,  & Church, K. (1984). A framework for support. Toronto:  Canadian Mental Health
Association (National).
Trainor, J., Pomeroy, E., & Pape, B. (1993). A framework for support for people with serious mental
health problems. Toronto: Canadian Mental Health Association (National).
Trickett, E. J. (2009). Community psychology: Individuals and interventions in a community con-
text. Annual Review of Psychology, 60, 395–419.
Tyler, F. B., Pargament, K. I., & Gatz, M. (1983). The resource collaborator role: A model for inter-
actions involving psychologists. American Psychologist, 38, 388–398.
Young, A. S., Chinman, M., Forquer, S. l., Knight, E. L., Vogel, H., Miller, A., & Mintz, J. (2005). Use
of a consumer-led intervention to improve provider competencies. Psychiatric Services, 56(8),
967–975.
Young, A.S., Forquer, S. L., Tran, A., Starzynski. M., & Shatkin, J. (2000). Identifying clinical compe-
tencies that support rehabilitation and empowerment in individuals with severe mental illness.
Journal of Behavioral Health Services & Research, 27(3), 321–333.
 9

Planning Transformative Change

for Mental Health Services for Diverse
Cultural-Linguistic Communities
geoffrey nelson, hsiao d’ailly, joanna ochocka, rich janzen,
sarah maiter , and nora jacobson

The purpose of this chapter is to illustrate the value of a framework that integrates
a consideration of culture and power in planning mental health services for diverse
cultural-linguistic communities1 and, in so doing, has the potential to transform
mental health services for these neglected communities. The chapter begins with an
overview of the Community-University Research Alliance (CURA) participatory
action research project, “Taking Culture Seriously in Community Mental Health,”
a five-year (2005–09) project funded for a total of $1 million by the Social Sciences
and Humanities Research Council of Canada and $350,000 by the Ontario Trillium
Foundation.2 Next, we review health planning in general and planning mental
health services for cultural-linguistic communities more specifically. In this review,
we relate planning to the theme of this book, transformational change in mental
health. We then describe the methodology and present and discuss the findings of
the CURA project. We conclude by exploring the implications of the planning pro-
cess for transformative change in mental health.

Overview of the Project

“Taking Culture Seriously in Community Mental Health” brought together more
than 40 diverse university and community partners in the Toronto and Waterloo
regions of Ontario, Canada. The purpose of this CURA was to use a participatory
action research (PAR) approach (Nelson, Ochocka, Griffin,  & Lord, 1998)  to

177
178 Transformative Change in Services & Practices

explore, develop, pilot, and evaluate how best to provide mental health services
and supports for people from different cultural-linguistic communities. Although
five cultural-linguistic communities were actively involved (Somali, Sikh Punjabi,
Polish, Mandarin, Spanish Latin American), the CURA emphasized the transfer-
ability of knowledge gained to all multicultural communities in Canada. The CURA
researchers included researchers from the Centre for Community Based Research
(CCBR), which was the lead organization for the project, and academic research-
ers and students from several universities and a teaching hospital. The CURA part-
ners and structure are depicted in Figure 9.1 ( Jacobson, Ochocka, Wise, & Janzen,
2007).
The CURA’s four phases included (1) exploring cultural-linguistic communities’
conceptualizations of mental health problems and services, (2) planning culturally
responsive projects, (3) implementing those projects, and (4) evaluating demon-
stration projects (see Figure 9.2). The findings from the first phase clearly showed
that although members of the particular cultural-linguistic groups that were part of
the CURA experienced significant mental health issues, they did not have access
to culturally responsive services (Simich, Maiter, Moorlag,  & Ochocka, 2009a;
Simich, Maiter, & Ochocka, 2009b; Westhues et al., 2008). These findings led to

CURA Partnership Structure

CURA PARTNERSHIP GROUP

Research Evaluation
Sub-committees Training Knowledge Working Group
Working Group Mobilization Working
Literature Web Key Informant Group
review survey interviews
Case Focus Theory
Studies Groups Building
Research Team
Project researchers, student
Toronto Steering researchers, comminity Waterloo Steering
Committee researchers Committee
-service providers, -service providers,
academics, cultural- academics, cultural-
linguistic community Toronto Waterloo
linguistic community
representatives Polish Somali
Toronto representatives
Community Community Waterloo
Somali
Community Polish
Toronto Waterloo Community
Mandarin Sikh Punjabi
Toronto Toronto Community Community Waterloo Waterloo
Sikh Punjabi Latin American Latin American Mandarin
Community Community Community Community

Figure 9.1  The Community-University Research Alliance (CURA) partners and structure.
From Jacobson, N., Ochocka, J., Wise, J., & Janzen, R. (2007). Inspiring knowledge mobilization
through a communications policy: The case of a community university research alliance. Progress in
Community Health Partnerships: Research, Education, and Action, 1, 99–104.
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 179

Phase IV: Phase I:

Outcomes tracked by Visioning through
evaluation knowledge production
 Demonstration  Values, action, and
projects participate in outcomes of the emerging
common evaluation framework
 Researchers evaluate  Researchers lead data
planning and gathering (5 methods) and
implementation analysis (3 levels)

Phase III: Phase II:

Implementation Planning through
through community knowledge
mobilization mobilization
 Partners implement 6  12 demonstration
demonstration projects projects developed
 Researchers link  Researchers assist
projects through partners in proposal
regular meetings development

Figure 9.2  The participatory action research (PAR) process.

the development of a framework (see Figure 9.3) for understanding how to create
transformative change in mental health services for cultural-linguistic communities.
The theoretical framework developed in the first phase of the CURA includes
four main components: values that guide concrete actions, which, in turn, produce
desired outcomes that serve to reinforce the stated values through a process of recip-
rocal collaboration ( Janzen, Ochocka, Jacobson, Maiter, Simich, Westhues, Fleras, &
the Taking Culture Seriously Partners, 2010; Westhues et al., 2008). Values encom-
pass issues of power (individual and community self-determination) and culture
(dynamic inclusion), as well as the intersection of power and culture (relational
synergy). Self-determination refers to the ability of individuals and communities to
voice their needs and aspirations. Dynamic inclusion emphasizes “the need to ensure
that people from all cultural-linguistic backgrounds have a sense of belonging to and
participation in mainstream society” ( Janzen et  al., 2010, p.  58). Relational syn-
ergy refers to how “new, mutually respectful, and beneficial connections between
cultural-linguistic communities and the mental health system” ( Janzen et al., 2010,
p. 59) may be forged at the intersection between power and culture.
180 Transformative Change in Services & Practices

Values
• Individual and community
self-determination
• Dynamic inclusion
• Relation synergy

Gui
rce
nfo

de
Reciprocal collaboration
Rei

• Mental health policy makers/planners

• Mental health organizations/practitioners
• Cultural-linguistic communities
Outcomes Actions
• Improved acceptability and • Enhancing communities
accessibility of services • Reconstructing the mental
• Better mental health promotion health system
and illness prevention • Building reciprocal
• Increased evidence that culture Produce relationships
is taken seriously

Figure 9.3  The Community-University Research Alliance (CURA) framework.

From Janzen et al. (2010).

Actions are directed at community members (transforming cultural-linguistic

communities), mental health policy makers, and mental health organizations
(transforming the mental health system), as well as at the intersection between
cultural-linguistic communities and the various parts of the mental health system
(building reciprocal relationships for transformative change). The desired long-term
outcomes of this participatory planning process include improved acceptability
and accessibility of mental health services and supports, enhanced mental health
promotion and prevention by addressing the social determinants of health, and
increased evidence that culture is taken seriously in mental health services. At the
heart of this framework is reciprocal collaboration among mental health funders,
policy makers, planners, service providers, and cultural-linguistic communities
( Janzen et al., 2010; Maiter, Simich, Jacobson, & Wise, 2008).
The second phase of the research, the focus of this chapter, examined the planning
of 12 initiatives for CURA demonstration projects (Moorlag, 2009). The planned
projects were designed to meet the needs uncovered during the first phase of the
research. In particular, the projects were to demonstrate how the concept of recip-
rocal collaboration identified in the theoretical framework could be implemented
in practice. A  participatory approach guided the planning process. Planning was
initiated through a series of community forums and a conference in which findings
from the first phase were presented and discussed. Building on these ideas, partners
then clustered into subgroups to further plan the projects and write funding pro-
posals. In total, 11 proposals were developed and submitted to different external
funding bodies. Of these 11 proposals, six were funded. Researchers evaluated this
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 181

planning process by considering the extent to which the 11 proposals were devel-
oped in accordance with the collaborative values, actions, and outcomes found in
the theoretical framework of the first phase. In the third and fourth phases, as proj-
ect partners implemented the six funded projects, the research team evaluated the
transformative processes and short-term outcomes to further refine the theoretical
framework.

Transformative Change and Planning Community

Mental Health Services for Diverse Cultural-Linguistic
Communities
The Need for Transformative Change
The literature has convincingly documented the underutilization of mental health
services by individuals from cultural-linguistic communities, the inadequacy of
service providers in providing culturally responsive interventions, and the fallout
of racism and ignoring language and cultural factors in human service systems
(e.g., Alegria, Atkins, Farmer, Slaton,  & Stelk, 2010; Corneau  & Stergiopoulos,
2012; Wexler, 2011). Effective, culturally responsive mental health services for
cultural-linguistic communities are still very much wanting, and many barriers exist
to changing the status quo. Innovation and transformation are necessary to address
the needs of an increasingly diverse Canadian population. As stated in a report from
the Mental Health Commission of Canada (MHCC) on improving mental health
services for immigrant, refugee, ethnocultural, and racialized groups, “the involve-
ment of communities, families and people with lived experience is key” (Hansson,
Tuck, Lurie,  & McKenzie for the Task Group of the Service Systems Advisory
Committee, Mental Health Commission of Canada, 2010, p. 6).
Transformative approaches to planning mental health services for cultural-
linguistic communities are congruent with the core values and concepts of the
CURA framework. First, consistent with the CURA value of self-determination,
and as demonstrated in the quotation from the MHCC, such approaches emphasize
that it is essential to maximize the opportunities for cultural-linguistic communities
to participate in the planning process. As Janzen et al. (2010) state, this value sug-
gests that “people from culturally diverse backgrounds, individually and collectively,
should direct the formation and implementation of culturally responsive services
and supports that promote their well-being” (p. 58). Second, it is not only impor-
tant that services lead to better outcomes for some members of cultural-linguistic
communities, but that the policies, organizations, and services become fundamen-
tally transformed so that culturally responsive approaches become deeply ingrained
and automatic in the day-to-day practices of mental health systems. Third, the rela-
tionship between cultural-linguistic communities and mental health organizations
182 Transformative Change in Services & Practices

requires a transformative power shift:  cultural-linguistic communities must gain

more power in their partnerships with mental health organizations.

Health Planning Frameworks

To give serious attention to diversity, culture, and context, it has been suggested
that a public health framework be used in planning mental health services (Alegria
et al., 2010). The dominant frameworks for planning health promotion programs
have used an evidence-based practice approach with a prescribed set of steps or
stages (Green & Kreuter, 2005; Mrazek & Haggerty, 1994). Although the commu-
nity may be engaged in these steps in the planning process, it is still professional
health planners or researchers who are in control of or direct the planning process.
Moreover, the “community” that is engaged typically consists of professional ser-
vice providers. In contrast, alternative frameworks have identified and highlighted
community empowerment as an important goal in health planning and typically
engage marginalized community members in the planning process (Barrera,
Castro, & Steiker, 2011; Laverack & Labonté, 2000; Nelson, Amio, Prilleltensky, &
Nickels, 2000). Although the former approach to health planning emphasizes the
rational-empirical, technical, and instrumental components of planning, the latter
approach emphasizes the collaborative processes, relational nature, value base, and
empowering nature of planning. Barrera et al. (2011) contrast the expert-driven, pre-
vention research cycle approach to planning (Mrazek & Haggerty, 1994) with more
community–health professional partnership or community-driven approaches (i.e.,
cultural adaptation of evidence-based interventions, investigator-initiated culturally
grounded interventions, and community-initiated indigenous interventions).
Both Laverack and Labonté (2000) and Nelson et al. (2000) have argued that
these two contrasting approaches are not incompatible. The frameworks that they
propose include rational-empirical, technical, and instrumental planning, but
within a highly participatory, empowering process with disadvantaged community
members. In this section, we briefly highlight some of the main themes of this inte-
grated approach to health planning.

Collaboration
Recently, there has been a great deal of interest in and research on collaboration
in planning community-based initiatives (Foster-Fishman, Berkowitz, Lounsbury,
Jacobson, & Allen, 2001; Warburton, Everingham, Cuthill, & Bartlett, 2008; Wolff,
2010). Models and principles of collaboration have been proposed (e.g., Bouwen &
Taillieu, 2004; Butterfoss, 2007; Wolff, 2010), and various evaluation methods and
tools have been devised to evaluate the process and outcomes of collaboration (e.g.,
Backer, 2003). Several sources (National Network for Collaboration, 1995; Nelson
et al., 2000; Wolff, 2010) have emphasized the diversity of talents that individuals,
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 183

groups, organizations, and communities bring to the collaborative efforts. The

National Network for Collaboration framework, developed by 11 land grant uni-
versities in the United States and the Cooperative States Research Education and
Extension Services (CSREES), also includes the contextual and process factors
needed to build effective working relationships, such as leadership, communication,
community development, sustainability, understanding community, research, and
evaluation.
Lasker and Weiss (2003) discussed “how-to” questions related to community
collaboration using the Community Health Governance model. Three essential
processes were identified for successful and effective collaboration:  empowering
individuals, creating bridging social ties, and creating synergy (i.e., breakthroughs
in thinking and action). Moreover, critical characteristics of the collaborative pro-
cess to achieve the three proximal outcomes were identified, including having the
“right mix” of people involved; ensuring feasible, active, and equal-footing partici-
pation; and having an ongoing and iterative process that includes meaningful input
for agenda setting, planning, and action focusing on multiple issues and problems.

Values
It has been argued that shared vision, mission, values, and principles serve as the
foundation of collaboration (National Network for Collaboration, 1995; Nelson,
Prilleltensky, & MacGillivary, 2001). Gray (1989) referred to the process of devel-
oping a shared vision as “direction setting” and emphasized the need for a superordi-
nate goal on which all partners could agree. When collaboration involves a variety of
stakeholders with different perspectives, establishing common ground can be chal-
lenging. Recent research has shown that when partners have a shared vision there
is an enhanced likelihood of ownership over the planning process (Foster-Fishman
et al., 2001; Nelson, Lord, & Ochocka, 2001; Warburton et al., 2008; Wolff, 2010).

Actions
Actions refer to the specific instrumental tasks that are undertaken in the plan-
ning process. Nelson et al. (2000) argued that the key tasks in planning a program
are to (1) first define the problem that will be addressed; next, to (2) develop a
program model; and last, to (3)  research and evaluate the implementation and
outcomes of the program. Working from an empowerment approach to evalua-
tion, Chinman et al. (2008) have elaborated six planning steps in their Getting to
Outcomes model: (1) choosing a problem focus; (2) identifying goals, the target
population, and desired outcomes; (3) finding evidence-based programs that can
address the problem; (4)  adapting the program to fit local needs; (5)  assessing
the community’s capacity to implement the program; and (6) making an imple-
mentation plan. These steps are the concrete actions that need to be undertaken in
program planning.
184 Transformative Change in Services & Practices

Outcomes
Outcomes refer to the end results of the planning process. Although outcomes are
usually thought of in terms of the impacts on the population targeted by the pro-
gram, we conceive of the outcomes of the planning process as the extent to which
the plans are actualized. The primary outcome of a planning process is obtaining
funding for and implementing a program. However, there are other potential out-
comes of planning, including enhanced community collaboration and capacity for
program planning; impacts on the attitudes and/or behaviors of individual stake-
holders; and policy, systems, and resource development (National Network for
Collaboration, 1995).

Planning Mental Health Services for Cultural-Linguistic

Communities
Until recently (Barrera et al., 2011), health planning frameworks have not adequately
addressed cultural-linguistic communities. Moreover, there has been little research
on planning mental health services for these communities. The little literature that
does exist suggests that, first, cultural-linguistic communities experience numerous
barriers to accessing mental health services (Simich et al., 2009a; Simich, Maiter, &
Ochocka, 2009b), and second, culturally responsive mental health services that are
collaboratively planned are needed to adequately serve cultural-linguistic commu-
nities (Barrera et al., 2011).
With regard to the first issue, access to services, Sin, Francis, and Cook (2010)
recently conducted a review of client access to child and adolescent mental health
services in the United Kingdom. They recommended the provision of information
about services and ways to access them by presenting it through minority languages,
for example.
With respect to the second issue of collaboratively planned, culturally respon-
sive services, Whaley and Davis (2007) argued that sociodemographic shifts in the
United States that indicate growing ethnic and racial diversity justify the need for
services that are cognizant of and responsive to a multicultural society. Moreover,
like Barrera et al. (2011), they asserted that evidence-based practice approaches can
be adapted to different cultural-linguistic communities. According to Whaley and
Davis (2007), strategies for promoting culturally responsive evidence-based prac-
tice interventions should allow research, especially on target populations of color, to
guide the development of an intervention. Encouraging ethnically diverse popula-
tions to participate in planning processes could lead to empowering outcomes and
more culturally responsive services for cultural-linguistic communities. Rodriguez,
Baumann, and Schwarz (2011) documented their successful process of adapting an
evidence-based parent training intervention, Parent Management Training–Oregon
Model (PMTO), for Spanish-speaking Latino parents. They concluded their paper
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 185

with an emphasis on the importance of “a collaborative team approach” to engage

communities as partners in the research enterprise and the necessity of engaging
the local community to adapt evidence-based practices.
A more critical examination of the applicability and dissemination of adult
mental health evidence-based practice for diverse ethnic minority populations
was undertaken by Aisenberg (2008). He argued that evidence-based practice is
limited by its epistemological narrowness, in that it excludes the voices of commu-
nities of color, and that racial and ethnic minority groups should be included in
planning to facilitate the promotion of culturally responsive evidence-based prac-
tice. Furthermore, Aisenberg (2008) argued for addressing the power relations
between service providers and clients as a precursor to the “planning, development
and implementation of evidence-based practice in ways that are responsive to the
needs of diverse ethnic minority populations and inclusive of the history, traditions,
experiences, culture, and practical wisdom within these communities” (Aisenberg,
2008, p. 305). In line with this perspective, Petersen et al. (2009) presented a case
study of deinstitutionalization of people with mental health issues living in a rural
district site in South Africa. Their study pointed to the need for greater input from
local specialist and community-based workers in planning mental health services.
In summary, there is very little literature on mental health planning for
cultural-linguistic communities. Research in this area would not only fill this gap,
but could also prove useful in light of the sociodemographic realities that character-
ize modern Canadian society.

Research Questions
The purpose of the research described in this chapter was to help fill the research
gap. More specifically, we wanted to understand how the content model of the
CURA framework, generated in the first phase, was translated into a planning pro-
cess in the second phase, expanding from the “what” of the framework to the “how”
of the framework. Essentially, we sought to elaborate the arrows that connect the
boxes in the framework depicted in Figure 9.3. The research questions were:

1. How well did the framework capture the planning process?

2. How might it be adapted or revised to better reflect that process?

Methodology
Sample
A total of 24 interviews and two focus groups were conducted for the 12 planning
initiatives. The number of people interviewed per site ranged from one to 12, based
186 Transformative Change in Services & Practices

on the number of people involved in the planning process. These interviews and
focus groups were conducted with those who played key roles in developing the
proposals for demonstration projects. In some cases, one person was interviewed
on multiple occasions because he or she was involved in more than one planning
initiative. In total, 34 different individuals were interviewed. There were 20 men and
14 women, a mix of service providers (11), agency directors (8), researchers (5),
and community members (10).

Data Collection
The CURA researchers conducted qualitative interviews with the participants. All
interviews were audio recorded and transcribed. The interviews and focus groups
set out to explore the values represented in the project, the planning actions,
the early outcomes of the project, and the collaboration involved in develop-
ing a demonstration project. Prior to the interviews, a standard set of preinter-
view questions was sent to the lead organizations to collect information about
the planning process, collaboration mechanisms, funding sources, and intended
objectives/outcomes for the proposed project. Once responses were received,
interviews were scheduled with those individuals identified as playing a key role
in the project planning.

Data Analysis
The CURA researchers analyzed all the transcripts using a thematic abductive
approach, for which the CURA model served as a guiding framework ( Janzen et al.,
2010; Westhues et al., 2008). The data were also coded through case study analysis
of each demonstration project, and summaries for each project were produced in
order to understand the influence of unique project processes on the planning out-
comes. An evaluation committee reviewed all of the initial coding and organized the
codes into larger thematic content areas.

Findings and Discussion

Key Components of the Planning Process: Values, Actions, and
Outcomes
The results of the analysis suggested that the CURA model was a good fit for
understanding the planning of the 12 initiatives. The themes associated with the
key planning components are shown in Table 9.1. Each of the major components
is illustrated with one of the CURA demonstration projects. For a description of all
the CURA demonstration projects, see Moorlag (2009).
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 187

Table 9.1  Themes for the Key Components of the Planning Process: Values,

Actions, and Outcomes

Components Themes
Values Action-oriented values
Developing a common vision
Actions Developing a program theory
Targeting potential funders
Writing and submitting proposals
Outcomes Partnership-building outcomes
Funding proposal outcomes
Collaboration Stakeholder participation
Initiation of the process
Role of the action researcher
Leadership dynamics
Reaching out to other partners
Collaboration outcomes

Vision and Values

There were two main themes pertaining to this component: action-oriented values
and developing a common vision.

A C T I O N - O R I E N T E D V A L U E S .  Those values that were mentioned as important

for the planning processes included collaboration, organizational change through
responsive programming, empowering cultural-linguistic groups through edu-
cation, community mobilization/community capacity building, awareness and
opportunities for participation, and shifting the existing power imbalance within
the current mental health system. Participants did not engage in abstract discus-
sions of the values guiding the projects; rather, they emphasized concrete action
and change. This is similar to what occurred in the value-based planning process
described by Prilleltensky, Peirson, Gould, and Nelson (1997).

D E V E L O P I N G A C O M M O N V I S I O N .   Developing a common vision for projects

that combined cultural diversity and mental health service provision was another
theme. Each of the 11 demonstration project proposals developed a common
vision, which was shared by the different stakeholders involved in the particular
project. The vision was similar across projects, with an emphasis on cultural respon-
siveness, power sharing, and innovation. This finding is consistent with previous
research on the importance of developing a common vision (e.g., Foster-Fishman
et al., 2001; Warburton et al., 2008).
188 Transformative Change in Services & Practices

I L L U S T R A T I O N :   I M M I G R A N T Y O U T H T H E A T E R I N H I G H S C H O O L S .   This
project addressed the need for awareness about the unique mental health stresses
that high school-aged immigrant youth face and what can be done to support
them. The development of a theater production provided a needed forum for
immigrant students to creatively express their voices, share their experiences
and stories, and promote understanding and dialogue within school community.
This project was a partnership among a professional theater group (MT Space),
Kitchener-Waterloo (KW) YMCA Cross Cultural Services, Waterloo Collegiate
Institute (a high school), and KW Counseling Services. Several of these partners
were involved with the CURA since its inception.
The theater production highlighted specific immigrant issues and incorporated
many cultural aspects of mainstream Canadian culture as well. It was developed
and performed by youth. The process of writing the script and of rehearsals was
facilitated by a high school teacher and a YMCA project staff member. The pro-
cess was facilitated according to the values of working across differences and finding
commonalities among youth and their diversity. The common goal of developing
a theatrical production that captures the depth and breadth of youth experiences
and struggles was helpful in this action-oriented process. The final production was
well received and performed five times. Each 15-minute performance was followed
by a facilitated “debriefing” workshop with audience members. The purpose of
these discussions was to analyze and reflect on the emotions evoked by the perfor-
mance and to seek understanding and solutions. Students learned about themselves
through the issues and topics that they explored. By presenting these topics to their
peers and teachers and by facilitating “debriefing” interactive sessions, immigrant
youth also felt heard and more in control. The school audience (peers, teachers, and
parents) also benefitted by learning about immigrant youth experiences and were
often moved by this artistic experience.

Actions
The instrumental tasks of planning were similar across the planning initiatives and
included developing a program theory, targeting potential funders, and writing and
submitting proposals. These tasks are similar to those identified in other planning
frameworks (e.g., Chinman et al., 2008; Nelson et al., 2000).

D E V E L O P I N G A P R O G R A M T H E O R Y .  Each
group worked to clarify and
articulate all proposal ideas and future project activities. Meetings were held to
develop a program theory that linked program activities and anticipated out-
comes. The program theory for each initiative was depicted in a program logic
model that outlines resources, activities, and intended outcomes. In some cases,
two or three people developed a detailed plan that was discussed and shaped by
other partners.
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 189

TA R G E T I N G P O T E N T I A L F U N D E R S .   Each planning process targeted one or two

funders, and project ideas were shaped according to funders’ objectives and priori-
ties. It was very important to find the best fit for each project idea with the potential
funders’ priorities. This process was implemented in different ways across projects.
In some cases, the process was more open, whereas in others the process was more
structured, according to funders’ application procedures. Funders were actively
involved in shaping project ideas for some of the initiatives.

WRITING AND SUBMITTING PROPOSALS.  In some cases, the proposal writers

were researchers who worked closely with other partners. In other cases, CURA
partners or managers from mental health organizations provided leadership in writ-
ing. The proposals were often distributed for comments and suggestions from vari-
ous partners before submission.

I L L U S T R A T I O N :   P U N J A B I C O M M U N I T Y M E N T A L H E A L T H S E R V I C E S .  This
project brought much needed treatment in mental health and addictions and
education to the large but underserved Punjabi cultural-linguistic community
in the Greater Toronto Area. Culturally responsive case management, out-
reach, and support services are now provided to members of the Punjabi com-
munity with serious mental health issues and addictions and their families by
service-providers of Punjabi background as a result of this project. As well,
weekly television and radio programs for the Punjabi community were devel-
oped to educate this community about mental health issues and addictions so
that people who are in need of services can seek help in a manner that is most
appropriate and relevant to their situation. Finally, educational workshops and
organizational consultation were also developed for mainstream mental health
organizations to help them provide more culturally responsive settings and ser-
vices to the Punjabi community. This project is run for the Punjabi community
by Punjabi mental health professionals.
This demonstration project was developed through researching the mental
health needs of the Punjabi community, as well as through the exploration of cultur-
ally effective ways to address mental health issues. The proposal was developed by
Punjabi community leaders who lobbied successfully with the Central West–Local
Health Integration Network (LHIN, the regional body for health system planning
and funding). Drafts of the proposal were circulated among partners for comments
and input. Ongoing funding for these services is provided by the Ontario Ministry
of Health.

Outcomes
There were two main themes that emerged regarding planning outcomes:
partnership-building outcomes and funding proposal outcomes.
190 Transformative Change in Services & Practices

P A R T N E R S H I P - B U I L D I N G O U T C O M E S . One important outcome of the planning

process was the development of new and strengthened partnerships among and
within stakeholder groups. Although we elaborate on this outcome in the next sec-
tion on collaboration, the relationship building that occurred among CURA part-
ners was viewed by those interviewed as an important outcome. Relationships that
did not previously exist between cultural-linguistic communities and mental health
agencies were developed and strengthened over the course of the project.

FUNDING PROPOSAL OU TCOMES. The second outcome area was more tangi-
ble, with new proposals being developed and, in some cases, funded. The CURA
researchers worked with 12 settings, 11 of which developed proposals for demon-
stration projects. Figure 9.4 captures a representation of each of the demonstration
project proposals on the continuum of mental health services, including primary
prevention (awareness and stigma reduction), secondary prevention (early interven-
tion), and tertiary prevention (formal and informal response to mental illness).
The demonstration projects funded were those that focused on services across the
mental health service delivery continuum (three funded projects fit into this cat-
egory) or projects that focused on mental health promotion, stigma reduction, and
prevention (three funded projects fit into this category). Some proposed projects
focused more on changing the mental health system, whereas others focused on
cultural-linguistic community building, with two projects focused on both systems

Province Wide Mental Health Punjabi

Theatre Leadership Cultural Community
& Development Navigators Health Services
Services across the
continuum:
Multilevel Intervention

Health Access to
Promotion & Early Intervention
Services & Support
Anti-Stigma
St. Joseph’s Somali
Cultural-Linguistic CMHA Grand River:
Settlement & Building culturally
Groups Mental Health responsive services

Newcomer Environmental Supportive CMHA Toronto:

Multicultural Older Adult
Youth Service Scan Housing & Building culturally
Men’s & Women’s Conversation
Theatre Diversity responsive
Support Groups Circles
services
= active CURA projects
= unfunded proposals

Figure 9.4  Demonstration projects on the continuum of mental health services.

 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 191

change and community building. The different emphases of each initiative reflected
the diverse needs and resources of the cultural-linguistic communities and mental
health or community services.
Of the 11 projects that submitted a funding proposal, six received funding and
were implemented. In some cases, proposals for a single project were submitted
to multiple funders prior to being approved for funding. Funders included federal
government departments, the Ontario Ministry of Health, and provincial and local
foundations. Only one of the project proposals was funded by the Ontario Ministry
of Health, and funded projects tended to focus on cultural-linguistic community
building, rather than on mental health systems change.
We found that the two outcome areas were interrelated. Partnership-building
outcomes can be seen as potentially building a foundation for further tangible plan-
ning outcomes. For the 12 planning initiatives, it generally was the case that those
proposals that were eventually funded tended to have more partners involved in col-
laborating on proposal development. Foundational relational outcomes have been
seen as developing the necessary energy, collaborative capacity, and legitimacy for
future tangible outcomes when implementing community collaboratives ( Janzen,
Seskar-Hencic, Dildar, & McFadden, 2012).
For those proposals that did not receive funding, one of the main obstacles faced
with the funding proposal was “fitting” the proposed project into the mandate out-
lined by the funder. A related problem was that sometimes the funders’ mandates
shifted over time, which challenged the resubmissions of proposals. Other reported
challenges included difficult timelines, job turnover within funding agencies, and a
lack of funding opportunities due to the tightening of budgets given the economic
recession.

I L L U S T R AT I O N :   STRENGTHENING M E N TA L H E A LT H IN C U LT U R A L -
L I N G U I S T I C C O M M U N I T I E S .   This
project, which was successful in terms of
both partnership building and funding outcomes, provided leadership training
and mental health education for cultural-linguistic communities in the Waterloo
Region. This education focused on the issues of mental health, information about
available mental health services and supports, tips on how to navigate mental
health services, and the development of resources that would be used for men-
tal health education in English-as-a-second-language (ESL) classes, settlement
organizations, and other settings. A  total of 27 people from cultural-linguistic
communities completed 30 hours of leadership training. Following this train-
ing, seven people who had completed the training and who represented different
cultural-linguistic communities were hired as Mental Health Navigators. These
Navigators then educated both members from their cultural-linguistic communi-
ties about mental health issues and services and staff from mental health organi-
zations about the cultural-linguistic communities. The goal of this project was
to build partnerships between these two previously disconnected stakeholder
192 Transformative Change in Services & Practices

groups so that people from cultural-linguistic communities could access treat-

ment and support that is responsive to their culture.

Collaboration: The Overarching Theme of the Planning Process

Collaboration was the overarching theme of the planning process and embraced all
of the components of planning: values, actions, and outcomes. Several components
of collaboration in the planning process emerged from the qualitative data: stake-
holder participation, the initiation of the process, the role of the action researcher,
leadership dynamics, reaching out to other partners, and collaboration outcomes.

Stakeholder Participation
Collaboration was intimately linked with values in that stakeholder participation
was a core value of the planning process. It was through collaboration that stake-
holders developed a common vision for the planning initiatives. Four major stake-
holder groups were involved in the planning, namely, the funders, mental health
service providers, cultural-linguistic communities and organizations that serve
them (e.g., settlement services), and CURA researchers. These were all partners
who had committed from the beginning to participate in the CURA. For a few
of the project proposals, only two of the stakeholder groups were involved in the
planning of the proposals. Yet, for several of the proposed projects, the collabora-
tion involved a fairly equal combination of all stakeholder groups. As one partici-
pant stated,

It wasn’t just about listening to me or [the organization’s Executive

Director] or those of us who are maybe more active in the CURA, it was
about listening to the other perspectives and incorporating their view into
it. I think bringing together people was an important mechanism and it
was around shaping [the project], which was around shaping a common
experience that we all have.

Although stakeholder participation is valued in discussions of collaboration

and planning (e.g., Nelson et  al., 2000; Wolff, 2010), the high level of stake-
holder participation in the planning and proposal development process stands
in contrast to what is actually practiced in many PAR projects (Stoecker, 2009).
Stoecker argues that stakeholder participation can be enhanced if greater empha-
sis is placed on the social change goals and strategies of the PAR project than on
the research goals and strategies. The CURA had a focus on social change from
the outset. Moreover, during the second and third phases, the CURA focused on
facilitating social change by creating new and innovative culturally responsive
interventions.
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 193

Initiation of the Process

Four of the 12 planning processes were initiated by CURA researchers who sought out
and developed partnerships with mental health or cultural organizations to develop a
proposal. For example, for one of the planning initiatives, the CURA first outreached
to the local Waterloo-Wellington Local Health Integration Network (LHIN) through
an invitation to the CURA conference, which was the culmination of the first phase of
the project. The LHINs are the local planning and funding bodies for health services
in Ontario; they are intermediary organizations between the provincial Ministry of
Health and long-term care and health service programs and hospitals. Following this
conference, there was interest on the part of LHIN in the CURA project.
Five proposals were initiated by organizations that were partners with the CURA
and had developed project ideas through a combination of the CURA framework
and internal organizational objectives regarding cultural-linguistic communi-
ties and mental health service delivery. In one of the planning initiatives, the execu-
tive director of the lead agency organized meetings with about 100 members of the
cultural-linguistic community. With a high level of community engagement, this
proposed project was owned by the community; as stated by this participant:

You can see from all these seniors, [they] would be all lively and they would
be talking; and they do not say that it is the [name of organization] project;
they say “our” [project]. So from their own perspective, they own it.

The initiation of two other proposals fell somewhere in between these two mod-
els of proposal development articulated earlier, with the process initiated jointly by
CURA researchers and community partners.
Thus, three broad types of planning emerged, one being CURA-led, another
being community partner–led, and the third being a balanced contribution of each
of these, whereby the project was collaborative from the outset.

The Role of the Action Researcher

The CURA researchers took on various roles that are similar to those described
by Stoecker (1999). Moreover, these roles were matched with the three types of
planning described earlier. First, CURA researchers played the role of initiator,
organizing stakeholders and helping them get started in planning. Second, CURA
researchers played the role of consultant to several initiatives that sprang from men-
tal health and cultural organizations. Third, CURA researchers played the role of
collaborator, working with organizations to plan culturally responsive services.
One participant commented on the helpfulness of CURA researchers in planning:

I think it was a two-way street. CURA had the expertise. . . . And [the ser-
vice delivery organization] had the expertise and the different access to the
194 Transformative Change in Services & Practices

community. So it was a great teamwork, and I think the support of CURA

was excellent in making this project a success.

Who initiated the process was less important than the fact that, over time, the
stakeholders who participated became involved in a reciprocal relationship in which
power, leadership, and expertise were shared. One change in the CURA framework,
depicted in Figure 9.3, that emerged from the findings is that the CURA research-
ers were perceived as key stakeholders in planning. The role of CURA researchers
in providing technical assistance and consultation, as advocated by Chinman et al.
(2008), was greatly appreciated by the community partners.

Leadership Dynamics
There was often a “leader” or “champion” within the planning team who gener-
ated enthusiasm, disseminated ideas among the stakeholders, connected with
funders, and, often, submitted the funding proposal. This leadership came from
different stakeholder groups. For example, one proposal was driven primarily by
a charismatic community leader who integrated his leadership with the voice of
the community members. In the words of one participant, “He is not the only
decision maker, but everyone looks up to him for leadership. He has trust. It took
many, many years of being in community development to build your credibility
in the community.”
Consistent with the theme of collaboration, as the different planning initia-
tives evolved and different stakeholders became involved, the leadership dynamic
shifted to one of “shared leadership” for several of the initiatives. In other cases,
leadership was either lacking or lost through staff transitions. As one participant
noted,

The project didn’t get off the ground, isn’t off the ground and one of the
key pieces that started the train to get off the track was when [agency rep-
resentative] suddenly left [the organization]. So the person that took the
primary, and she is a very strong individual, she suddenly left [organiza-
tion]. So we were in the position of having a proposal and losing the best
champion of our partners.

The importance of leadership in collaboration that we found is consistent with

previous research (Lasker & Weiss, 2003; Weiss, Anderson, & Lasker, 2002).

Reaching Out to Other Partners

Typically, the first step in planning involved organizing a small group of people.
This process included an initial meeting, typically with two or three people who
could champion the ideas in the planning process and who could host or implement
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 195

the innovation if funded. This small group acted later as a promoter and host that
approached additional partners to share their ideas and to plan to work together
if and when funding was obtained. This process involved contacting others and
inviting them to attend meetings or obtaining their commitment to work together
in the future. Thus, collaboration was central to planning actions.

Collaboration as an Outcome
Finally, partnership building and collaboration were also important outcomes, as
was briefly noted earlier. For the majority of initiatives, the planning process was
generally smooth. Key stakeholders, many of whom had previous working rela-
tionships, came together and actively collaborated to plan a project that seemed
viable, was community relevant and applicable, and had built-in plans for sustain-
ability. With these project proposals, partners were enthusiastic, and the project
goals appeared to be filling an obvious gap in service delivery. Key informants
reported strengthened relationships, increased communication, and increased syn-
ergy among partner organizations and groups, which is consistent with previous
research on the outcomes of partnerships (National Network for Collaboration,
1995). As one participant noted,

It deepened our relationship with the Centre for Community Based

Research. Did that relationship improve? Absolutely. . . . In the preparation
of the piece we were in constant communication with service-providers,
policy-makers and community members. . . . So at the core of this proj-
ect . . . there is ongoing communication . . . there is awareness and there is
enthusiasm and all those people investing their time and energy and this
is kind of a catalyst.

For a few initiatives, however, the planning process was not so smooth. Some
stakeholders experienced a degree of conflict in the planning process and met with
resistance from mental health service providers and policy makers. For example,
some projects noted a lack of communication or a lack of awareness about each
stakeholder’s intentions and expectations in the process, a lack of role clarity, and
frustration due to a lack of follow-through or movement within the decision-making
processes of the demonstration project (“a lot of talk and no action”). For these
projects, partnership-building outcomes were less evident:

The [organization] was very lost in envisioning how this process of change
can happen. We had first hoped [that an agency representative] can lead
this project, but during the discussion we discovered there was a lack of the
vision of how to do that. . . . We expected him at each of these meetings and
he was supposed to bring other people, but nobody was there. It was us
196 Transformative Change in Services & Practices

and the communities talking about this importance of action and linking
back to the hospital and we didn’t have the players from [the organization].
I think the reciprocal collaboration value that is at the heart of our
CURA framework never really was lived out. In this project . . . [the lack
of commitment] made it difficult for the culture of [the organization] to
actually want to change and to actually want to connect at a more deep
level with communities to help them to change. We picked up that there
was a resistance to change and a resistance to really engage with communi-
ties. . . . That was really what killed the project. . . . How can we go out to cul-
tural communities when there isn’t that willingness to change internally?

Conclusion: Planning Mental Health Services

for Cultural-Linguistic Communities
and Transformative Change
The Planning Framework
The research reported in this chapter sought to determine how well the CURA
framework developed in the first phase of the project captured the planning process
in the second phase of the project and how the framework might be adapted or
revised to better reflect the planning process. Overall, the specific components of
the framework provided a good fit for understanding the planning process ( Janzen
et al., 2010). Although there were implicit values (e.g., collaboration, power shar-
ing) that guided the partnerships, service providers and cultural-linguistic commu-
nity members did not speak a great deal about abstract values but rather more about
their lived experiences and their desire for change. What was more important was
developing a common vision; having an effective leadership to carry forward that
vision; collaborating with other partners; having the support, technical assistance,
and credibility of the CURA; having an equal voice in the process; and engaging in
concrete planning actions designed to create new and innovative projects to meet
the mental health needs of cultural-linguistic communities. Similar to Wolff (2010),
this research found that stakeholder collaboration was the central component in the
planning process and that there were a number of important subcomponents (e.g.,
leadership, opportunities for stakeholder participation) of collaboration.
One revision to the framework concerned the key role of the action researcher
in the planning process. Although not part of the original framework, participants
clearly underscored the importance of the CURA researchers as stakeholders in
creating change. This speaks to the important need for technical assistance in the
planning of mental health programs (Chinman et al., 2008) and the multiple roles
that action researchers can play, depending on the needs and readiness for action
of the particular planning group (Stoecker, 1999). Although the skills of the action
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 197

researchers were important in catalyzing change (Grant, Nelson, & Mitchell, 2008),

the support provided by the researchers was made possible largely with the five-year
funding of the CURA project. Clearly, specific investment and funding for collabo-
ration strengthened program planning and resulted in six funded demonstration
projects. It was also crucial that the CURA researchers were informed by a perspec-
tive that emphasized power, culture, and collaboration. This particular lens was
helpful in working with cultural-linguistic communities and mental health agencies
to develop culturally responsive initiatives.

Transformation of Mental Health Services

Dimensions of Transformative Change
Whereas mainstream mental health services focus on the diagnosis and treatment
of individuals, the projects that were developed through the CURA are transforma-
tive in their emphasis on the meaning of mental and emotional distress and the
cultural context for individuals from diverse cultural-linguistic communities. For
this project, Simich et al. (2009b) used the concept of “social liminality” to describe
“how immigrants perceive themselves to be in a psychologically stressful, transi-
tional state” and the concept of “cultural negotiation” to describe “how they actively
cope with cultural tensions and respond to mental health challenges” (p. 255). Their
analysis stands in sharp contrast to the medical model. In mainstream mental health
services, treatment consists of medication and psychotherapeutic interventions
delivered by mental health professionals. However, members of cultural-linguistic
communities often perceive these services as alien and irrelevant, and they tend to
be mistrustful, suspicious, or unaware of these services (Simich et al., 2009a).
The programs developed with members of cultural-linguistic communities
in this project have more of a collectivist focus, with greater involvement of the
extended family and community, and a more holistic character in their focus on the
promotion of individual, family, and community well-being (Simich et al., 2009a).
A good example of the process of cultural negotiation, identified by Simich et al.
(2009b), is the Mental Health Navigators program that was a partnership between
cultural-linguistic communities and mental health service providers. Moreover,
consistent with the notion of transformation, the practical knowledge, experience,
and wisdom of cultural-linguistic communities were viewed as indispensible in the
services that were created through the CURA (Maiter et al., 2008).

Creating Transformative Change

Nelson, Kloos, and Ornelas (Chapter 1 in this volume) underscore three key ele-
ments in creating transformative change:  vision and values, addressing power
imbalances, and using ecological approaches. Although challenging, the partici-
pants in this research indicated that establishing common ground among a variety
198 Transformative Change in Services & Practices

of stakeholders with different perspectives (e.g., mental health policy makers and
service providers, members of cultural-linguistic communities) was an important
part of the process of creating mental health services for the cultural-linguistic com-
munities. Typically, members of cultural-linguistic communities have less power
than do members of the mainstream culture, just as people with mental health
issues have less power than mental health professionals. Thus, power needs to be a
central issue in any approach that strives to create transformative change for people
with mental health issues coming from cultural-linguistic communities ( Janzen
et al., 2010). To reduce power differences among stakeholders, we found that efforts
to encourage the active participation of cultural-linguistic communities in the trans-
formative change process and to reduce obstacles to such participation were impor-
tant in planning mental health services. This research underscores the importance
of amplifying the voices of those who have less power, so that they can raise their
issues, share their frames of reference and lived experiences, and articulate their
vision for change. The collaborative processes used enhanced the transformative
outcomes of participation of cultural-linguistic communities, cultural responsive-
ness of mental health organizations, and power sharing in the relationships between
cultural-linguistic communities and agencies.
As Nelson et  al. (Chapter  1 in this volume) note, there are many different
approaches to transformative change that seek to change the environment or sys-
tems. One can make a distinction between approaches that are aimed at organiza-
tional change to make existing mental health services more culturally responsive
and those that involve the creation of new services or settings that are alternatives
to or complement mainstream mental health services. Although somewhat differ-
ent, these two approaches share the goal of building the capacity of the community
to respond effectively to the needs and preferences of people with mental health
issues from different cultural-linguistic communities and of shaping the particular
approaches and initiatives taken. This project employed both approaches.
In spite of the success of the CURA in putting issues of culture and mental health
in the spotlight, creating partnerships among different stakeholders, generating 11
funding proposals for new programs, and successfully obtaining six funded projects,
only one of the funded projects obtained funding from the LHINs and the Ontario
Ministry of Health, which are responsible for funding mental health services. This
can be disconcerting if it is taken as an indicator of the resistance of change to the
status quo. Similarly, most of the funded projects focused on strengthening men-
tal health supports within cultural-linguistic communities rather than on changing
the mental health system. Some of the projects that focused on mental health sys-
tems change experienced a lack of support from mental health organizations and
service providers. These findings suggest that transformative change is a process
that requires systematic and deliberate action from engagement, problem defini-
tion, planning, change efforts, and sustainability. It requires a balance of time per-
spectives: short-term action on opportunities, careful planning for medium-range
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 199

outcomes, and strategic relationship building and resource development for

long-term sustainability. Thus, the more fundamental transformative change of the
mental health system needed to support all Canadians, which was underscored in
a recent national report (Kirby & Keon, 2006), requires our continued attention.

Acknowledgments
The “Taking Culture Seriously in Community Mental Health” Community
University Research Alliance (CURA) study was funded by the Social Sciences and
Humanities Research Council of Canada and the Ontario Trillium Foundation. For
a list of partners and further information, please visit http://www.communitybase-
dresearch.ca/takingcultureseriouslyCURA/. We thank Elin Moorlag for her contri-
butions to this research.

Notes
1. Cultural-linguistic communities in the context of this study refer to five immigrant communi-
ties in Canada: Somali, Sikh Punjabi, Polish, Mandarin, and Latin American.
2. For more information about this CURA, contact the CURA director, Dr. Joanna Ochocka,
Centre for Community Based Research, Kitchener, Ontario, Joanna@communitybasedre-
search.ca.

References
Alegria, M., Atkins, M., Farmer, E., Slaton, E., & Stelk, W. (2010). One size does not fit all: Taking
diversity, culture and context seriously. Administration and Policy in Mental Health and Mental
Health Services Research, 37, 48–60. doi:10.1007/s10488-010-0283-2
Aisenberg, E. (2008). Evidence-based practice in mental health care to ethnic minority communi-
ties: Has its practice fallen short of its evidence? Social Work, 53(4), 297–306.
Backer, T. E. (2003). Evaluating community collaborations: An overview. New York: Springer.
Barrera, M. Jr., Castro, F. G., & Steiker, L. K. H. (2011). A critical analysis of approaches to the
development of preventive interventions for subcultural groups. American Journal of commu-
nity Psychology, 48, 439–454. doi:10.1007/s10464-010-9422-x
Bouwen, R.,  & Taillieu, T. (2004). Multi-party collaboration as social learning for interdepen-
dence: Developing relational knowing for sustainable natural resource management. Journal of
Community and Applied Social Psychology, 14, 137–153. doi:10.1002/casp.777
Butterfoss, F. D. (2007). Coalitions and partnerships in community health. San Francisco: Jossey-Bass.
Chinman, M., Hunter, S. B., Ebener, P., Paddock, S. M., Stillman, S., Imm, P., & Wandersman, A.
(2008). The Getting to Outcomes demonstration and evaluation: An illustration of the preven-
tion support system. American Journal of Community Psychology, 41, 206–224. doi:10.1007/
s10464-008-9163-2
Courneau, S.,  & Stergiopoulos, V. (2012). More than being against it:  Anti-racism and anti-
oppression in mental health services. Transcultural Psychiatry, 49, 261–282. doi:10.1177/
1363461512441594
200 Transformative Change in Services & Practices

Foster-Fishman, P.  G., Berkowitz, S.  L., Lounsbury, D.  W. Jacobson, S.,  & Allen, N.  A. (2001).
Building collaborative capacity in community coalitions: A review and integrative framework.
American Journal of Community Psychology, 29, 241–261. doi:10.1023/A:1010378613583
Grant, J., Nelson, G.,  & Mitchell, T. (2008). Negotiating the challenges of participatory action
research:  Relationships, power, participation, change and credibility. In P. Reason  & H.
Bradbury (Eds.), The Sage handbook of action research:  Participative inquiry and practice
(pp. 589–601). Thousand Oaks, CA: Sage.
Gray, B. (1989). Collaborating:  Finding common ground for multiparty problems. San
Francisco: Jossey-Bass.
Green, L., & Kreuter, M. (2005). Health program planning: An educational and ecological approach
(4th ed.). New York: McGraw-Hill.
Hansson, E., Tuck, A., Lurie, S., & McKenzie, K. (2010). Improving mental health services for immigrant,
refugee, ethno-cultural and racialized groups: Issues and options for service improvement. Prepared
for the Task Group of the Services Systems Advisory Committee, Mental Health Commission of
Canada. Retrieved from http://www.mentalhealthcommission.ca/SiteCollectionDocuments/
Key_Documents/en/2010/Issues_Options_FINAL_English%2012Nov09
Jacobson, N., Ochocka, J., Wise, J., & Janzen, R. (2007). Inspiring knowledge mobilization through
a communications policy: The case of a community university research alliance. Progress in
Community Health Partnerships, 1, 99–104. doi:10.1353/cpr.0.0004
Janzen, R., Ochocka, J., Jacobson, N., Maiter, S., Simich, L., Westhues, A., Fleras, A., & The Taking
Culture Seriously Partners. (2010). Synthesizing culture and power in community mental
health: An emerging framework. Canadian Journal of Community Mental Health, 29(1), 51–67.
Janzen, R., Seskar-Hencic, D., Dildar, Y., McFadden, P. (2012). The interconnectedness of theory
and practice:  Using evaluation to shape and direct Comprehensive Community Initiatives.
Canadian Journal of Program Evaluation, 26, 61–88.
Kirby, M. J. L., & Keon, W. J. (2006). Out of the shadows at last: Transforming mental health, men-
tal illness and addiction services in Canada. Ottawa: The Standing Senate Committee on Social
Affairs, Science and Technology. Retrieved from www.parl.gc.ca
Lasker, R.  D.,  & Weiss, E.  S. (2003). Broadening participation in community problem solv-
ing: A multidisciplinary model to support collaborative practice and research. Journal of Urban
Health:  Bulletin of the New  York Academy of Medicine, 80(1), 14–47. doi:10.1093/jurban/
jtg014
Laverack, G.,  & Labonté, R. (2000). A planning framework for community empowerment
goals within health promotion. Health Policy and Planning, 15, 255–262. doi:10.1093/
heapol/15.3.255
Maiter, S., Simich, L., Jacobson, N., & Wise, J. (2008). Reciprocity: An ethic for community-based
participatory action research. Action Research, 6, 305–325. doi:10.1177/1476750307083720
Moorlag, E. (2009). Overview of the planning processes for 12 CURA demonstration projects. Kitchener,
ON: Centre for Community Based Research.
Mrazek, P. J., & Haggerty, R. J. (1994). Reducing risk for mental disorders. Washington, DC: National
Academy Press.
National Network for Collaboration. (1995). Collaboration framework: Addressing community capac-
ity. Retrieved from http://crs.uvm.edu/nnco/collab/framework.html
Nelson, G., Amio, J., Prilleltensky, I., & Nickels, P. (2000). Partnerships for implementing school
and community prevention programs. Journal of Educational and Psychological Consultation, 11,
121–145. doi:S1532768XJEPC1101_7
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
Nelson, G., Ochocka, J., Griffin, K., & Lord, J. (1998). “Nothing about me, without me”: Participatory
action research with self-help/mutual aid organizations for psychiatric consumer/ survivors.
American Journal of Community Psychology, 26, 881–912. doi:10.1023/A:1022298129812
 Trans for mative Chang e for D ivers e Cult ural -Ling ui sti c C ommuni ti e s 201

Nelson, G., Prilleltensky, I., & MacGillivary, H. (2001). Building value-based partnerships: Toward

solidarity with oppressed groups. American Journal of Community Psychology, 29, 881–812.
doi:10.1023/A:1010406400101
Petersen, I., Bhana, A., Campbell-Hall, V., Mjadu, S., Lund, C., Kleintjies, S., Hosegood, V., Flisher,
A. J., & the Mental Health and Poverty Research Programme Consortium. (2009). Planning
for district mental health services in South Africa: A situational analysis of a rural district site.
Health Policy and Planning, 24(2), 140–150. doi:10.1093/heapol/czn049
Prilleltensky, I., Peirson, L., Gould, J.,  & Nelson, G. (1997). Planning mental health services for
children and youth:  Part I—A value-based approach. Evaluation and Program Planning, 20,
163–172. doi:10.1016/S0149-7189(96)00047-X
Rodriguez, M.  M. D., Baumann, A.  A.,  & Schwartz, A.  L. (2011). Cultural adaptation of an
evidence-based intervention:  From theory to practice in a Latino/a community context.
American Journal of Community Psychology, 47, 170–186. doi:10.1007/s10464-010-9371-4.
Simich, L., Maiter, S., Moorlag, E., & Ochocka, J. (2009a). Taking culture seriously: Ethnolinguistic
community perspectives on mental health. Psychiatric Rehabilitation Journal, 32, 208–214.
doi:10.2975/32.3.2009.208.214
Simich, L, Maiter, S.,  & Ochocka, J. (2009b). From social liminality to cultural negotia-
tion: Transformative processes in immigrant wellbeing. Anthropology and Medicine, 16, 253–
266. doi:10.1080/13648470903249296
Sin, C. H., Francis, R., & Cook, C. (2010). Access to and experience of child and adolescent mental
health services: Barriers to children and young people with learning disabilities and their fami-
lies. Mental Health Review Journal, 15(1), 20–28. doi:10.5042/mhrj.2010.0199
Stoecker, R. (1999). Are academics irrelevant? Roles for scholars in participatory research. American
Behavioral Scientist, 42, 840–854. doi:10.1177/00027649921954561
Stoecker, R. (2009). Are we talking the walk of community-based research? Roles for scholars in
participatory research. Action Research, 7, 385–404. doi:10.1177/1476750309340944
Warburton, J., Everingham, J., Cuthill, M., & Bartlett, H. (2008). Achieving effective collaborations
to help communities age well. The Australian Journal of Public Administration, 67, 470–482.
doi:10.1111/j.1467-8500.2008.00603.x
Weiss, E. S., Anderson, R. M., & Lasker, R. D. (2002). Making the most of collaboration: Exploring
the relationship between partnership synergy and partnership functioning. Health Education
and Behavior, 29, 683–698. doi:10.1177/109019802237938.
Westhues, A., Ochocka, J., Jacobson, N., Simich, L., Maiter, S., Janzen, R.,  & Fleras, A. (2008).
Developing theory from complexity:  Reflections on a collaborative mixed method par-
ticipatory action research study. Qualitative Health Research, 18, 701–717. doi:10.1177/
1049732308316531
Wexler, L. (2011). Behavioral health services “don’t work for us”: Cultural incongruities in human
service systems for Alaska native communities. American Journal of Community Psychology, 47,
157–169. doi:10.1007/s10464-010-9380-3
Whaley, A.,  & Davis, K.  E. (2007). Cultural competence and evidence-based practice in men-
tal health services:  A  complementary perspective. American Psychologist, 62(6), 563–574.
doi:10.1037/0003-066X.62.6.563
Wolff, T. (2010). The power of collaborative solutions:  Six principles and effective tools for building
healthy communities. San Francisco: Jossey Bass.
 PA RT F I V E

TRANSFORMATIVE
COMMUNITY CHANGE
 10

Recovering Community in Mental Health

The Contributions and Challenges of Community Psychology
bret kloos, greg townley, victoria h. chien, betsy a . davis,
l aura kur zban, and david asiamah

Finding supportive community environments is a persistent challenge for many

persons with diagnoses of serious mental illness. Even when receiving good
clinic-based mental health care, many persons encounter major problems that can
profoundly affect their adaptive functioning. Traditional models of community
mental health (CMH) interventions have not adequately addressed issues of hous-
ing, social inclusion, stigma, and discrimination that can have profound effects on
individual functioning. However, developments in community psychology can
inform and push CMH movements to adopt models of empowerment, recovery,
and community integration rather than focus primarily on rehabilitation. This
chapter draws on theoretical frameworks, case examples, and empirical research to
argue for a renewed emphasis on community in mental health programs and poli-
cies. That is, promotion of transformative change in mental health will require a
focus on changing or developing community settings in addition to helping build
the capacities of individuals with mental health challenges. It requires consider-
ing how our communities exclude persons diagnosed with psychiatric disabilities
from opportunities for participation in community life. To this end, this chapter
re-examines the importance of social relationships and structural factors in mental
health and well-being and proposes the promotion of community-centered priori-
ties for mental health programs and policies that go beyond trying to help people
“fit into” community settings.
The initial section of the chapter focuses on the kind of community experiences
that need to be reincorporated into CMH. In particular, we discuss those aspects of
community life that might be promoted in CMH, challenges to promoting partici-
pation in community settings, and how community integration can become a prior-
ity for CMH. In the second section, we articulate four domains for the promotion of

205
206 Transformative Communit y Change

participation in community life for persons with psychiatric disabilities: (a) access

to community life, (b) responses to social exclusion, (c) systematic efforts to address
marginalization in community activities, and (d) efforts to address prejudice and
discrimination. In each domain, we review challenges and promising interventions.
The chapter closes with a brief discussion of roles for people who want to promote
greater access to community life for persons with psychiatric disabilities and pro-
poses hallmarks of a system working to recover community in mental health.
We also include a brief note about language. Although there is not consensus
across localities or groups about terminology to use when referring to people who
have experience with mental health problems, it is clear that “person-first” language
is important for respect, to avoid potential stigmatizing representations, and to pro-
mote understanding of opportunities for transformative change. We have decided
to use the terms persons with psychiatric disabilities, persons with diagnoses of serious
mental illness, and mental health consumers after consulting with persons who have
experience in using mental health services and who are working to challenge ineq-
uities in access to resources based on mental health status. We use the terms inter-
changeably to acknowledge that there is no consensus about terminology and to
respect the input of our collaborators.

Community and Community Mental Health

A report developed for the World Health Organization (WHO, 2010) argues that
a broad view of mental health is needed to advance the promotion of functioning
and well-being in persons experiencing psychiatric disabilities. Within this frame-
work, mental health is not the absence of illness; rather, mental health is “a state
of well-being in which the individual realizes his or her abilities, can cope with
normal stresses in life, can work productively and fruitfully, and is able to make a
contribution to his or her community” (WHO, 2010). Central to this definition is
the critical role of community settings in providing opportunities, challenges, and
resources for people to develop mental health. The WHO framework also points to
the importance of community-level interventions in creating opportunities and fos-
tering individual capabilities. Like community psychologists, the WHO framework
points to the necessity of undertaking interventions to change community settings
to promote mental health for persons with psychiatric disabilities who too often
find themselves excluded from or marginalized in community settings.

Defining Participation in Community Life

Within our framework, promoting opportunities for participation in community
life is the primary goal. Most people have goals for choice and independence in
meaningful activities, valued social roles, and significant relationships that are
 R ecover ing Communit y in Me ntal Health 207

embedded in community contexts (e.g., where to live, work or go to school, spend

leisure time, and have supportive relationships). A mental health system focused on
promoting participation in community life must still address issues of functioning
and distressing symptoms; however, these should not be the end goal, but simply a
few of the challenges that need to be addressed. The social experience of diagnosed
mental illness and negative community reactions to persons with identified mental
illness can create a substantial barrier that needs dedicated resources and sustained
effort to break down and to then create opportunities for social inclusion and recov-
ery embedded in community life. Without systematic, systemwide efforts to iden-
tify and promote opportunities for participation, transformative change in mental
health is not possible.
Any framework focused on community-level interventions to promote mental
health needs to be explicit about expectations and choices for participation in com-
munity life. As argued by Ware, Hopper, Tugenberg, Dickey, and Fisher (2007),
community integration of persons identified with psychiatric disabilities is not
merely a matter of living “in the community”; it is about being part of it. Community
psychologists share Ware et al.’s vision that participation in community life is criti-
cal to personal well-being. Mere physical integration, merely being “in” a setting or
focusing on individual-level change efforts to make a mental health services “client”
“fit in” will not be sufficient for promoting mental health.

Promoting Integration Experiences in Community Settings

Over the past 10 years, active participation in community life for individuals with
psychiatric disabilities has become an increasingly visible priority among research-
ers (e.g., Aubry & Myner, 1996; Gulcur, Tsemberis, Stefancic, & Greenwood, 2007;
Lemaire & Mallik, 2005; Prince & Gerber, 2005; Wong & Solomon, 2002). Most
of these studies have focused on community integration as a primary concern. For
instance, Bond, Salyers, Rollins, Rapp, and Zipple (2004) refer to community inte-
gration as “a unifying concept providing direction and vision in community mental
health for people with severe mental illness” (p. 570). Yanos (2007) instructs us
that “first and foremost, it is important that community integration be placed on the
agenda of researchers who study the effects of place on people with mental illness”
(p. 673). Davidson (2005, p. 243) suggests that “the relatively uncharted territory
of how people with severe and persistent mental illness navigate their immedi-
ately social environments becomes both a timely and important focus for empiri-
cal study.” Community integration has also been on the agenda of national mental
health policy. For example, the President’s New Freedom Commission on Mental
Health report (Hogan, 2003) stressed the need for services to assist persons with
mental illness to live, work, learn, and participate fully in their communities.
Community integration outcomes have been documented as important for
positive mental health (e.g., Aubry  & Myner, 1996; Gerber et  al., 2003). Prince
208 Transformative Communit y Change

and Gerber (2005) examined relationships among three components of com-

munity integration (physical presence and activities in community settings, social
engagement in community-based relationships, and psychological perceptions of
belongingness to community settings) and subjective well-being in a sample of 92
persons with serious mental illness. They found that both physical and psychologi-
cal integration were positively related to subjective quality of life, suggesting that
both physical presence in the community and perceptions of sense of community
and belonging can enhance life satisfaction. Social integration has been found to
be positively related to quality of life (Aubry & Myner, 1996) and life satisfaction
(Ware, Hopper, Tugenberg, Dickey, & Fisher, 2008; Wieland, Rosenstock, Kelsey,
Ganguli, & Wisniewski, 2007). The diversity of these findings suggest that accessi-
bility to community life through social interaction likely varies by context and that
the relative importance of different dimensions of community integration (social
inclusion, participation in activities, or perceptions of belonging) will vary by per-
son–environment interactions.

Challenges for Promoting Integration Experiences

Community integration experiences appear to be shaped by interactions with
community members and the perceived tolerance (or intolerance) of communi-
ties toward mental illness. For example, Prince and Prince (2002) examined the
relationship between perceived stigma and community integration in 95 clients
of Assertive Community Treatment (ACT) teams and found that clients’ percep-
tions of stigmatization were inversely related to their psychological integration.
Thus, individuals who perceived greater amounts of community prejudice toward
persons with mental illness experienced lower levels of a sense of community and
belonging. From a qualitative study of 80 individuals with a mental illness diag-
nosis and a history of homelessness, one-third of participants reported difficulties
fitting in to their neighborhoods, including instances of discrimination (Yanos,
Barrow, & Tsemberis, 2004). Factors that reportedly impeded individuals’ ability
to fit in included a lack of neighborhood safety and low neighborhood tolerance
for “different” types of behaviors. Wong, Metzendorf, and Min (2006) found that
the experience of social rejection kept individuals from interacting with neigh-
bors. One participant in the study spoke about attempting to meet neighbors at
a neighborhood meeting: “I went to the meeting and got told to my face, ‘What
are you doing at this meeting? You’re not a homeowner . . . you live in the build-
ing where those crazy people are’ ” (p. 52). To cope with instances of discrimina-
tion, participants discussed having to adopt “passing strategies” (e.g., blending
in, being invisible, and minding one’s own business) in order to interact with
neighbors. Although these studies demonstrate community-based factors that
may impede integration, community factors that can promote integration are not
well understood.
 R ecover ing Communit y in Me ntal Health 209

There is some indication of promise in promoting integration experiences by

focusing on those opportunities for community life tied to types of housing and
neighborhood conditions. In a study of 225 individuals with serious mental illness
residing in the community, Gulcur et al. (2007) reported that housing choice and
living in scattered-site housing were predictive of psychological and social integra-
tion. Living in a staffed housing site with rigid rules may be detrimental to commu-
nity integration (Yanos et al., 2004). Kruzich (1985) and Nagy, Fisher, and Tessler
(1988) both found that individuals living in large housing sites are less likely to
engage in community activities, whereas the findings of Felce, Lowe, and Jones
(2002) suggest that there may be an optimal, mid-range housing size because larger
resident groupings were associated with higher engagement in activities. The loca-
tion of the housing site certainly impacts physical integration as well, and Kruzich
(1985) found that individuals who live close to transportation and stores are more
likely to be integrated into their communities. Silverman and Segal (1994) found
that individuals’ satisfaction with their dwellings and neighborhoods, as well as the
length of time they have lived there, were related to their perceptions of “fitting in.”
To this point, knowledge about the specific factors of housing and neighborhood
conditions associated with integration has been limited, and further research is
needed. Participating in community life likely requires efforts to address discrimina-
tion and stigmatizing attitudes encountered and to create opportunities for choice
and positive interactions outside of the mental health system.

Reconsidering Community Integration as a Focus

on Mental Health Promotion
Although an emphasis on community integration has the potential for focusing on
social experiences of persons with psychiatric disabilities, too often efforts have
centered primarily on helping people “fit in” to their settings and on changing indi-
vidual skills and behavior; that is, the focus on ameliorative change characterizes
most community integration-focused initiatives. This is important work, but only
part of the equation. As Shinn (Chapter 4, this volume) argues, environmental fac-
tors play a large role in opportunities to participate in community life and in the
development of capabilities for self-care, recovery, and participation in community
life. Recent developments in theory and advocacy have led many to re-examine
community integration as a goal and to promote new ways of thinking about partici-
pation in community life (e.g., Salzer & Baron, 2006; Ware et al., 2008). An alterna-
tive approach to conceptualizing community integration suggests that it is a process
that unfolds over time, one in which persons increase their capacities for connect-
edness (e.g., enjoying reciprocal social relationships) and citizenship (e.g., enjoying
the rights and responsibilities of a democratic society; Ware et  al., 2007; 2008).
This approach focuses on identifying factors that promote integration opportuni-
ties as another type of community integration outcome, along with physical, social,
210 Transformative Communit y Change

and psychological integration. Researchers and advocates have begun to discuss

the degree of opportunity that people have to utilize community resources (Salzer
and Baron, 2006), realizing that most individuals would not necessarily choose to
access all available opportunities (Yanos, Felton, Tsemberis, & Frye, 2007).

Challenges Affecting Opportunities for Integration

The ideal of individuals with disabilities being fully engaged in their communities
remains an unrealized goal (Partington, 2005). There are various reasons for this,
perhaps the primary one being that individuals with disabilities have fewer oppor-
tunities to engage in their communities (White, Simpson, Gonda, Ravesloot,  &
Coble, 2010). Unaffordable or inaccessible housing, limited opportunities for
employment, and lack of transportation severely limit involvement of individuals
with disabilities. For example, 10% of people without disabilities compared to 30%
of people with disabilities report transportation as a major problem (White et al.,
2010). Particularly in rural areas where little public transportation exists, mental
health consumers are often reliant on the mental health system to provide transpor-
tation (Yeich, Mowbray, Bybee, & Cohen, 1994). This severely limits individuals’
ability to participate in activities—particularly normalized, self-initiated activi-
ties in the community. The education gap is also significant; compared to 1 in 10
people without disabilities who drop out of high school, 1 in 5 adults who have a
disability do not graduate from high school (Hogan, 2003). One of the unfortunate
consequences of this discrepancy is that individuals with psychiatric disabilities are
more likely to be underemployed and living below the poverty line (Drake, Skinner,
Bond, & Goldman, 2009). People who face financial difficulties often struggle to
meet basic needs (White et al., 2010), thus making it even more difficult to establish
supportive social networks and engage meaningfully in the community.
Prevailing CMH models promote an individual’s integration into community
settings but do not address the environmental challenges faced by many persons
diagnosed with serious mental illness. We are coming to understand that the failure
to address the social experiences of many mental health consumers is a critical fail-
ure of our models and approaches to intervention. As a group, persons diagnosed
with psychiatric disabilities have reduced access and face substantial barriers to
participating in community life (McCormick, Funderburk, Lee,  & Hale-Fought,
2005; Stein & Santos, 1998). Access to affordable, quality housing in safe neighbor-
hoods or meaningful employment are lacking (Hiday, Swartz, Swanson, Borum, &
Wagner, 1997; Newman & Goldman, 2009). Too often, persons feel isolated and
socially excluded from congregations, neighborhood groups, or civic organizations.
When they are included, persons diagnosed with mental health problems are mar-
ginalized with token roles and less access to those social networks with social capi-
tal (Townend & Braithwaite, 2002). Unfortunately, there continues to be a large
amount of prejudice and discrimination about mental illness in most countries and
 R ecover ing Communit y in Me ntal Health 211

by many professionals (Corrigan, 2004). A primary challenge for the development

of new models to address mental health problems is the extent to which these “new”
approaches can address these widespread negative social experiences.

Questions to Guide the Recovery of Community in Community Mental Health

We propose that a new CMH focused on transformative change needs to address
four questions as it attempts to promote participation in community life in localities
where they operate:

1. What access do persons diagnosed with serious mental health problems have to
community life in your locale?
2. How do initiatives address the social exclusion that persons with psychiatric dis-
abilities experience from formal and informal social institutions?
3. What systematic efforts are used to address instances of marginalization of per-
sons using mental health services when they participate in community-based
institutions?
4. How does your system of care (and you) address prejudice and discrimination
toward persons with mental health problems that occur in your community?

Any effort to address these questions will require collaboration among different
sectors of a community and among mental health professionals, mental health
consumers, family members, and interested community members. We argue that
these questions likely will never be “answered” in a definitive sense, but will require
attention, persistence, and creativity in continued response to the changing social
relationships in our communities. To address these questions in a meaningful way
requires acknowledging that persons with diagnoses of serious mental illness are
citizens of our communities and that the well-being of persons with identified psy-
chiatric disabilities requires input from all sectors of communities to create oppor-
tunities for participation in community life.

Key Domains of Community Life

In an effort to articulate how these questions may be addressed, we have orga-
nized the remainder of this chapter to consider four clusters of challenges and
four domains of community life in which responses to these challenges can be
organized:  accessibility (housing), social exclusion (neighborhood resources),
marginalization (participation in associational life), and prejudice/discrimination
(citizenship). Although these challenges and the counteracting interventions are
not typically featured in mental health policy, growing innovation in these areas war-
rants their consideration when creating models of transformative change in mental
212 Transformative Communit y Change

health. Furthermore, organizing interventions and community capacity around

these domains may have promise for sustainability because they focus on common
features in community life (McKnight & Block, 2010). Many innovations in mental
health programming and policies have faltered when specialized settings created to
address needs are no longer sustained through lack of funding, attention, or initia-
tive. We should note that the domains of work and education are also important for
promoting participation in community life and that there are important develop-
ments in these areas for persons with psychiatric disabilities. Reviewing work in
these domains is not included in this chapter because they are addressed in chapters
in this volume by Karen Unger (Chapter 14) and Ornelas, Duarte, and Monteiro
(Chapter 12).

Addressing Accessibility of Community Life: Promoting Access to

Quality, Affordable Community-Based Housing
Opportunity to participate in community life is typically predicated on having
access to physical resources and networks of social resources. Stated another way,
participation in community life requires that people spend time in locations that
have resources and that people can regularly interact with persons in those settings.
Understood from a transformative change perspective, people often need more
than mere exposure to environments of opportunity. When we enter new commu-
nity settings, most of us need to develop a familiarity with how the resources of
the setting can be used for regular interaction (which entails personal skills), and
we need to understand from the help of others in the setting that we are welcome
to utilize the social and physical resources located in these settings (community
tolerance/assistance). Affordable, quality, safe housing is often a physical embodi-
ment of these principles. Although there are other factors related to having access
to community resources (e.g., transportation, employment, etc.), we focus on hous-
ing because of the historic role it has played in mental health policy, new develop-
ments in mental health practices that can contribute to transformative change, and
its potential to transform individuals’ lives and systems of care (see Chapter 13 by
Goering & Tsemberis in this volume).

Challenges with Housing

Many persons with diagnoses of serious mental illness have restricted opportuni-
ties to live in well-resourced community settings or have little choice of where to
live. Historically, mental health systems have accepted the task of placing restric-
tions on individuals who were believed to need structured care. We removed people
from community settings to asylums deemed to be less stressful but that ultimately
emphasized control and separation from community resources. Over the past
40 years, the development of CMH models, deinstitutionalization movements, and
 R ecover ing Communit y in Me ntal Health 213

the Olmstead decision have challenged assumptions about the necessity for and
advantages of restrictive models of care. Many mental health systems have pursued
policies to “return” persons from institutions to community settings. As argued ear-
lier, prevailing approaches to CMH developed new, community-based care systems
that have had limited interaction in community settings. All too often, efforts to
help people integrate into new housing settings (i.e., physical integration) have been
undermined by social experiences of isolation, loneliness, community rejection, or
unsafe conditions (Kloos, Zimmerman, Scrimenti, & Crusto, 2002; Yanos, 2007).
Furthermore, the cost and quality of housing used by many persons with diagno-
ses of serious mental illness places severe restrictions on opportunities for partici-
pation in community life. Persons with psychiatric disabilities typically have fewer
choices of affordable housing (Carling, 1995; Kloos, 2010). In one study, clients
paid between 39% and 54% of their income for housing, although their income
was substantially lower than the average for general population (Newman, 1994).
Obtaining a place to live in neighborhoods that are safe and that have social oppor-
tunities and resources is a major challenge (Kloos, 2010; Nelson, Lord, & Ochocka,
2001). Housing quality is a greater concern for persons with serious mental illness
given that they typically have worse housing conditions than the general population
(e.g., neighborhoods high in crime, noise disturbance, crowding, home life charac-
terized by dysfunctional relationships; Wong & Stanhope, 2009). They also have a
higher cost burden relative to their income (Newman, 1994). Thus, housing condi-
tions are appropriately viewed as potential chronic strains on functioning.
The cost and quality of housing available to the large majority of persons using
public sector mental health care at CMH centers result in compromise decisions
that involve living in remote locations that are affordable but may be less safe. People
may choose to separate or even isolate themselves from neighborhoods that are not
safe. If people choose to spend more of their income on housing, this contributes
to housing instability. Given these factors, it is not surprising that Newman (1994)
found that people diagnosed with serious mental illness had relative high rates of
what she termed chronic residential mobility.

Interventions That Can Increase Accessibility

S U P P O R T E D H O U S I N G .   The most common approach studied to promote acces-
sibility in living in community settings has been characterized as supported hous-
ing (Ridgeway & Zipple, 1990; Rog, 2004). This model emphasizes the provision
of housing subsidies to persons who have psychiatric disabilities, who have been
homeless, and who have little income (e.g., Gulcur et al., 2007; Rog, 2004; Shern
et  al., 1997)  and is paired with the provision of supportive services designed to
improve mental health outcomes and adaptive functioning. Participation in these
supported housing programs was associated with increased housing stability and
residential tenure (Hurlburt, Hough, & Wood, 1996; Shern et al., 1997; Tsemberis,
214 Transformative Communit y Change

1999). Housing stability has also been associated with reduced hospitalizations
(Dickey et al., 1996), psychiatric symptomatology, and substance use (Newman,
2001; Siegel et  al., 2006). There is also some indication that supported housing
as a mental health services strategy realizes a cost benefit in reduced service use
compared to other housing interventions (Dickey, Latimer, Powers, Gonzalez, &
Goldfinger, 1997).

L A N D L O R D I N T E R V E N T I O N S .   Although formal collaborations with landlords

have received virtually no attention in mental health research, policy makers and
service providers have emphasized the importance of good relationships with
landlords and neighbors for housing stability (Carling, 1995; Chien & Cole, 1973;
Kloos et al., 2002; Truman & Hartenstein, 1990). As we have argued, promoting
participation in community life will require developing partnerships with commu-
nity members outside of the mental health system who can have an impact on the
lives of persons with mental illness. To the extent that housing interventions are
part of these efforts, working relationships with landlords offer opportunities for
intervention. Many landlords or property managers have regular contact with their
tenants by virtue of their presence in the neighborhood. These interactions can be
a significant source of stress or comfort for clients. Data from a study of 290 per-
sons living in supported housing supports this view (Frisman, Rodis, Kloos, Lin, &
Kitchener, 2000). Clients’ perceptions of a supportive landlord relationship are
associated with more positive contact with neighbors, better satisfaction with hous-
ing, and a more positive evaluation of the neighborhood as a place to live (Frisman
et al., 2000; Kloos, 2000).
The New Haven Landlord-Service Provider Forum was developed from the
efforts of a citywide housing program for people with psychiatric disabilities. The
Forum sought to improve communication and promote shared problem solving
among landlords, service providers, and tenants, thereby increasing the housing
stability of tenants before problems in housing had to be addressed (Kloos et al.,
2002). The Forum helped identify available housing for persons with psychiatric
disabilities. It provided an opportunity to educate landlords about mental health
issues and for service providers to develop a better understanding of their clients’
challenges and interests in living independently. One tangible benefit of these dis-
cussions was the development of a Welcome Guide with practical information for
people moving into housing (Kloos et al., 2002).

Addressing Social Exclusion from Community Life: Promoting

Development and Access to Neighborhood Resources
The isolation experienced by many persons living in supported housing has raised
awareness of the need to focus on the social exclusion of many persons with psy-
chiatric disabilities. In relation to society at large, the networks of individuals with
 R ecover ing Communit y in Me ntal Health 215

serious mental illness are smaller, less diverse, less interconnected, include fewer
meaningful personal relationships, and entail a greater reliance on dependent ties
(e.g., family members and mental health staff) and relationships formed in mental
health contexts rather than in the general community (Eklund & Hansson, 2007;
Schwartz  & Gronemann, 2009; Segal, Silverman,  & Tempkin, 1997). Typically,
following the first major episode of mental illness and hospitalization, many indi-
viduals with psychiatric disabilities experience a significant decrease in the number,
frequency, and quality of social contacts and supports (Brown, 1996). Beels (1981)
terms this experience a network crisis, and it may cause individuals to become with-
drawn and isolated from the community at large—impairing both their ability and
also their motivation to form social relationships and engage in community activi-
ties (Beels, 1981; Schwartz & Gronemann, 2009).
This gap in addressing the social needs of persons who have disabilities is a con-
temporary analogue to the shortcomings of deinstitutionalization efforts for per-
sons with long histories of psychiatric treatment. Research has documented that
the provision of housing can significantly buffer stress, but alone it does very little
to promote personal growth or positive affect (Davidson & Strauss, 1995; Earls &
Nelson; 1988). Alienation and isolation have been well-documented unintended
consequences of efforts to physically integrate persons with serious mental illness
into community settings (Kloos, 2010; Nelson et al., 2001). A CMH system that
promotes transformative change needs to address the social needs of persons with
psychiatric disabilities.
In her reviews of mental health and housing research, Newman has noted that
individuals with serious mental illness appear to function better in communi-
ties that are perceived to be more tolerant and supportive (Newman, Rechovsky,
Kaneda,  & Hendrick, 1994; Newman, 2001). Neighborhood environments are
important pathways to experiences with community life (Baker & Douglas, 1990;
Glynn, 1986; Harkness, Newman, & Salkever, 2004; Newman, Harkness, Galster, &
Reschovsky, 2001; Shinn & Toohey, 2003).
A study by Kloos and Townley (2011) examined the relationship between
neighborhood experiences and psychiatric distress for individuals with serious
mental illness and found that neighborhood acceptance accounted for a signifi-
cant proportion of the variance in psychiatric distress. Psychological experiences
of the neighborhood, such as lack of neighborhood acceptance, represent more
global and persistent forms of neighborhood distress. These chronic forms of
stress are known to especially tax our adaptive coping systems (Diez-Roux, 2001;
Ross, 2000; Yohe  & Tol, 2002). In a general population, positive neighbor rela-
tions can be fostered via neighborhood organizations/interest groups (e.g., neigh-
borhood association, gardening group, recreation teams, book clubs; Carpiano,
2007; Wandersman, Florin, Friedmann, & Meier, 1987) and the development of
green spaces (Sugiyama, Leslie, Giles-Corti, & Owne, 2008). These settings create
opportunities for neighbors who may not otherwise interact to engage in a shared
216 Transformative Communit y Change

interest. From a capabilities perspective, participation in neighborhood groups is an

important resource for all persons, including those with diagnoses of mental illness.
When neighborhood interactions are positive, such opportunities for mingling can
be especially valuable for persons with serious mental illness because they enhance
self-efficacy for socially engaging with others. Moreover, they can effectively reduce
negative attitudes toward persons with serious mental illnesses.

Interventions to Promote Social Connection and Social Inclusion

P A R T I C I P A T I O N I N C O M M U N I T Y - B A S E D A C T I V I T I E S .  Consistent with the
framework of this chapter, researchers have found that consumers who are further
along in the recovery process report more community activities and greater inten-
tionality about using those activities as part of their functioning (Cunningham,
Wolbert, Graziano, & Slocum, 2005). A cross-sectional, nonexperimental investiga-
tion of recovery found a significant positive relationship between activities (includ-
ing within or outside of the home) and recovery (Hendryx, Green, & Perrin, 2009).
Interestingly, the researchers also found an interaction of this relationship with
social support, so that, at lower levels of social support, the number of activities was
more strongly related to recovery than at high levels of social support.

T E N A N T O R G A N I Z AT I O N S :  M U T U A L H E L P, C I T I Z E N PA RT I C I PAT I O N.  Although
supported housing programs can increase consumers’ presence in community set-
tings, they do not necessarily address the social exclusion that persons diagnosed
with psychiatric disabilities encounter in neighborhoods. Kloos and colleagues
(Kloos, Scrimenti, Masson, Ottenheimer, Davis, & Snow, 2012) determined that
they needed to create a separate intervention for persons living in supported hous-
ing to create opportunities for participation and social connection. They decided
to create a tenant organization of mental health consumers who also lived in sup-
ported housing. Their organizing strategy may also be seen as creating a mutual
aid society:  persons who shared common experiences come together to share
resources to address their needs (e.g., immigrant groups, benevolent fraternal soci-
eties). Fundamental to this intervention was the conceptualization of participants
as tenants rather than as consumers, clients, or patients. Those further along in their
tenancy had important experiences and practical knowledge to share with newer
tenants. The organization met monthly to share information and practical resources
and for social events. For some participants, the social connection provided by the
tenant organization was sufficient for their needs. For others, it became a spring-
board for engaging in community associations in their city. It is important to note
that the setting was conceived of as a tenant organization, rather than as a support
group or mental health service. As such, it represented an attempt to work across the
boundaries of mental health systems to support persons with disabilities where they
live (Kloos et al., 2012).
 R ecover ing Communit y in Me ntal Health 217

Addressing Marginalization in Community Life: Promoting

Participation in Associations
Within many Western countries, much of community life is organized around
voluntary associations of common interest (e.g., sports clubs, music, hobbies) or
that address common challenges (e.g., neighborhood associations, health condi-
tions), or have a common ideology (e.g., political organizations, religious organi-
zations). Kretzmann and McKnight (1993) have argued that an important index
of community vitality is the presence and activity of these associations that bring
people together. These associations are places to exchange support and link persons
to resources. Rather than expecting resources to be provided by outside groups or
by businesses, many challenges can be addressed by people sharing the resources
that they already have. This model of community development offers an alternative
framework for conceptualizing how mental health systems might support people
with mental illness to participate in community life. Rather than creating systems
and programs within mental health systems exclusively, this approach argues that
efforts be based in existing community settings.

In the Community but Not of the Community

One important challenge to this approach follows efforts to promote social
inclusion. In those situations in which persons with psychiatric disabilities par-
ticipate in neighborhood or community-based groups, all too often, they report
being marginalized in these groups (Rowe, Kloos, Chinman, Davidson, & Cross,
2001). A promotion of participation in community-based associations needs to
include attention to how those associations can include persons as full members.
Even in settings that are ostensibly open and affirming of all members, persons
with mental illness may not feel engaged. For example, in a study of 533 persons
living in supported housing, 57% reported participating in religious congrega-
tions; however, only half of those attending services reported seeing persons from
these organizations outside of a weekly worship service more than once a month
(Kloos & Townley, 2011). In some cases, people receive an unwelcoming recep-
tion when they participate in certain settings. In others, individuals with psychi-
atric disabilities may marginalize themselves to avoid the chance of experiencing
rejection and ridicule (Link, Phelan, & Bresnahan, 1999). Practical barriers to full
participation in terms of financial resources and transportation produce further
limitations on full participation.
From a transformative change perspective, one might evaluate the ade-
quacy of mental health system approaches to care by how much they facilitate
(a) involvement in meaningful activities, (b) opportunities for people to be rec-
ognized for valued contributions to the group, and (c) the prospect of long-term
reciprocal relationships tied to activities. New developments in services inno-
vation and research suggest that social connection that occurs through formal
218 Transformative Communit y Change

association-based relationships (e.g., being a member of a club or organization)

or through less formal social ties (e.g., regular interaction with supportive shop-
keepers or neighbors) has been overlooked in mental health policy and programs
(Kloos, 2010). Naturally occurring supports in the community can also impact
opportunities to participate in community life. Wieland, Rosenstock, Kelsey,
Ganguli, and Wisniewski (2007) apply the term “distal support” to support pro-
vided through casual community relationships developed via regular contact with
other individuals who live and work in the same community (e.g., shop owners,
sales clerks, bartenders, librarians, and other community members). The authors
argue that this support is not necessarily central to the individual’s life or a part
of his or her formal support structure, yet “these weak ties may help to promote a
sense of integration and belonging and provide the intangible support of accep-
tance, familiarity, and sociability in a predictable environment without impos-
ing emotional demands” (Wieland et al., 2007, p. 2). In a study of 58 individuals
with serious mental illness living in the community, Wieland et al. found that a
greater number of distal supports were associated with higher quality of life sat-
isfaction ratings and sense of belonging scores. These distal relationships are par-
ticularly important for individuals who may not have strong friendship and family
networks.

Organizing Potential Natural Support Resources

Another example of a community-level approach to the problem of social isola-
tion has been developed by the Canadian Mental Health Association (CMHA).
The CMHA’s Framework for Support (Trainor, Pomeroy, & Pape, 1993) draws on
principles of self-help to ensure that people with serious mental health problems
live rich and fulfilling lives while minimizing the need for professional interven-
tion. The framework emphasizes utilizing three domains of community support
before using formal mental health services: self-help, family/friends/neighbors,
and generic community resources. The articulation of the framework is needed
because of the tendency in communities to expect that the mental health sys-
tem will take on all responsibilities for support. “Instead of being the ‘back-up’
to those domains of support, professional services then become the only sup-
port sector with a person becoming increasingly isolated from natural supports”
(Carling, 1995, p. 57). This framework envisions mental health systems as having
a new goal, that of strengthening other domains of support so that they bolster a
person’s abilities to address his or her own problems with the help of his or her
relationships and community resources. The Framework for Support strives to
promote community integration, which is the integration of a person with seri-
ous mental health problems into “normal” community settings and relationships
(Wong & Solomon, 2002; Yanos, 2007).
 R ecover ing Communit y in Me ntal Health 219

Countering Prejudice and Discrimination Encountered

in Community Life: Promoting Citizenship Development
and Opportunities
Finally, efforts to promote participation in community life need to include system-
atic interventions to address prejudice and discrimination faced by persons with
psychiatric disabilities in many community settings. These interventions may help
prepare persons for encounters with prejudice or to cope with or confront discrimi-
nation. However, a focus on transformational change leads to consideration of how
we may challenge the attitudes, behaviors, and policies of a broad range of com-
munity members. We propose that interventions that focus on citizen participation
and the citizenship of persons with diagnoses of mental illness can positively chal-
lenge these negative attitudes and behaviors (Kloos, 2010; Kloos et al., 2012; Rowe,
Kloos, Chinman, Davidson, & Cross, 2001). Hence, we argue for the importance of
helping communities engage persons with diagnoses of mental illness as full part-
ners in democratic decision making about matters that affect the community, their
neighbors, and themselves.
In the field of mental health, prejudice and discrimination about mental illness
are often grouped together as the effects of mental illness stigma. From a trans-
formational perspective, it is helpful to conceptualize stigma as prejudice and dis-
crimination because it can guide efforts for intervention. Rather than trying to rid
individuals of a stigma, it focuses on identifying and changing prejudicial attitudes,
policies, and behaviors. Before considering some points for intervention, we first
consider prejudice and discrimination in mental health as it has been described as
stigma.

Stigma
Broadly speaking, stigma can be defined as negative attitudes and beliefs about a
certain behavior or personal characteristic—in this case, serious mental illness.
Examples of prejudicial attitudes are that those with mental illness are weak, incom-
petent, violent, or worthless (Corrigan  & Watson, 2002). Stigma can be divided
into two domains: (a) devaluation, or social status loss and lack of worth associated
with mental illness; and (b) discrimination, or the “social distance” and perceptions
of incompetence often attributed to this population (Link, 1987, p. 97). For exam-
ple, a landlord with stigmatizing prejudices may feel that a potential tenant with
mental illness is not worth the hassle she may cause (devaluation) and therefore
may decide to deny her the opportunity to rent the space (discrimination).
Types of stigma. Various facets of stigma have been explored, including public
stigma (i.e., the general public’s negative attitudes toward those with mental illness),
perceived stigma (i.e., mental health consumers’ perceptions of public stigma), and
self-stigma (i.e., consumers’ negative attitudes about themselves because of their
220 Transformative Communit y Change

mental illness). Each facet of stigma affects those with psychiatric disabilities in dif-
ferent ways. For our purposes here, we focus on public stigma.
Public stigma often leads to actual experiences of discrimination in a range of
settings, including in vocational, housing, social, and even mental health-related
contexts. Such stigma often limits the opportunities for individuals with diagnoses
of serious mental illness to form new relationships, gain mainstream employment,
and pursue other elements of a “normal” life in the community. This type of dis-
crimination can have negative impacts on the stigmatized individual’s self-esteem
and self-efficacy through a number of mechanisms. Social psychologists have theo-
rized that the lack of chances to prove one’s competency that results from public dis-
crimination can lead to a failure to develop a strong sense of self-efficacy, which can
in turn negatively affect self-esteem for stigmatized individuals (Crocker & Major,
1989). It is also theorized that public stigma may negatively influence interactions
between those in stigmatized groups and key figures in their lives (e.g., teachers,
family members, health care professionals). Specifically, these key figures may cre-
ate a self-fulfilling prophecy in which the stigmatized individuals are subtly dis-
couraged from succeeding in certain expected domains (e.g., school performance).
As a result, the stigmatized individuals often fail to develop certain skill sets in
these domains and subsequently tend to have lower self-esteem and self-efficacy
(Crocker & Major, 1989).
In a study by Yanos et al. (2004), individuals with mental illnesses reported that
low community tolerance and lack of neighborhood safety impeded individuals’
ability to participate in the community. Davidson, Stayner, Nickou, Styron, Rowe,
and Chinman (2001) identified stigma as an obstacle to establishing social relation-
ships among persons with psychiatric disabilities. This has been affirmed by other
studies showing that stigma associated with having a mental illness is linked to social
isolation (Corrigan, 2005; Corrigan & Penn, 1999; Link, Phelan, & Bresnahn,1999;
Link, Strening, Neese-Todd, Asmussen, & Phelan, 2001; Wong et al., 2006). Stigma
is recognized as a major challenge to community integration for persons with men-
tal disorders not only by researchers (e.g., Dewees, Pulice, & McCormick, 1996;
Jivanjee, Kruzich, & Gordon, 2008), but also by the WHO (2010). Interestingly,
investigations on community tolerance for mental illness appears to focus more on
negative (e.g., stigma) rather than positive (i.e., community acceptance) evaluations
of the construct, possibly indicating that the problem-focused paradigm (medical
model of treatment) continues to have strong influences on the field of mental
health research.

Efforts to Address Prejudice and Discrimination Reflected in Mental Illness Stigma

Most of these efforts first recognize that all persons are valued members of society
and expect that they can and will participate in community decisions. As a citizen,
there are both rights and responsibilities for fostering positive community settings.
 R ecover ing Communit y in Me ntal Health 221

It would be expected that citizen participation would include both a greater sense of
membership in a community and greater influence on what that community does.
Efforts to include persons diagnosed with mental illness as citizens communicate a
view that they are valued and equal to other citizens.

I N T E R V E N T I O N S W I T H P O L I C E :   C R I S I S I N T E R V E N T I O N T E A M S .  As first
responders, police are often the primary responders to psychiatric emergencies.
However, encounters with police can be problematic for persons with psychiatric
disabilities (Gur, 2010). A series of interventions have been developed to engage
police officers in addressing prejudicial views that officers might have about mental
illness. Crisis intervention teams (CIT) are community-based partnerships among
those with psychiatric disabilities, supportive family members, and police officers.
Crisis intervention teams offer training and problem-solving resources for plan-
ning how police officers can respond to mental health emergencies. The purpose
of the groups is to encourage officers to treat persons with mental illness as citizens
and to respect their needs. The training provides officers with a range of alterna-
tive responses and local resources for addressing crises (Bahora, Hanafi, Chien, &
Compton, 2008; Lattimore, Broner, Sherman, Frisman, & Shafer, 2003).

M E D I A W A T C H .   Mental health advocates and some service organizations have cre-

ated groups to monitor media coverage of mental health issues and how persons
with mental health are portrayed. When problems are noted, they may engage in
direct action to challenge these portrayals or create resources to educate persons.
In some cases, media watch efforts have been able to cancel television shows with
negative portrayals of persons with psychiatric disabilities (e.g., South Carolina
Department of Mental Health, 2011; Wahl, Wood, & Richards, 2002).

The National Alliance for Mental Illness in the United

P E R S O N A L C O N TA C T.  
States has a program that trains speakers to share their experiences with others who
are willing to challenge their beliefs about mental illness and to address prejudices
that are identified (e.g., In My Own Voice). Research suggests that this personal
contact is more persuasive than other forms of education or awareness raising
efforts (Corrigan, 2004; Corrigan et al., 2010).

L E G A L I N T E R V E N T I O N S .   In some cases, realizing transformative change will

require direct legal action. The Americans with Disabilities Act (ADA) of 1990
created a legal basis for challenging social exclusion and discrimination in employ-
ment, housing, and participation in civic institutions. In the United States, this sig-
nified an important change in the civil rights goal for integration; namely, a shift
from partial to the full participation of individuals with disability in their society.
The ADA’s Preamble characterizes full participation as a form of independent living
that is not under the control of another.
222 Transformative Communit y Change

Conclusion
New models of mental health promotion must conceptualize how individuals
can participate in community settings, how communities need to change to cre-
ate opportunities for participation, and how mental health systems can promote
such opportunities. As we have argued, these efforts will require developing new
partnerships outside of mental health systems for fuller engagement in community
life. They will also require developing new roles for mental health professionals and
persons who use these services.
Community psychologists can play important facilitative roles by identifying
and promoting interventions that have been empirically evaluated as effective. In
doing so, they can help identify innovations and promote their implementation.
These efforts can also challenge conventional conceptualizations of mental health
problems and refocus attention on the social experience of mental illness in com-
munity life, which all too often includes social exclusion, marginalization, preju-
dice, and discrimination. In some instances, community psychologists may help
to create alternative, mediating structures that can create opportunities for partici-
pating in community life (e.g., tenant organizations) or link key stakeholders (e.g.,
landlord-service provider forum).
To guide such efforts, we need to examine our goals for what community set-
tings can be. McKnight and Block (2010) have borrowed from the field of commu-
nity development to propose that we challenge service systems to use models that
can be characterized as “abundant communities” that have resources, opportuni-
ties, and potential already within them that need to be organized and encouraged.
We would be vulnerable to repeating past mistakes of mental health reform if we
assume that we need to create brand new settings and resource structures to meet
the goals of transformative change for mental health. Rather, we can develop envi-
ronments that are open to and affirming of persons with mental health challenges
in many communities. The framework from this chapter suggests that hallmarks of
successful efforts to recover community in mental health will include (a) opportu-
nities for participation in community life, (b) choice in participation, (c) access to
local resources, and (d) shared local responsibility for initiatives. If we are successful
in developing models of transformative change, we will enrich our communities as
we contribute to community life.

Acknowledgments
The preparation of this chapter was supported in part by the National Institute
of Disability Rehabilitation and Research Grant H133G090036, Investigating
Environmental Factors Affecting Community Integration.
 R ecover ing Communit y in Me ntal Health 223

References
Aubry, T., & Myner, J. (1996). Community integration and quality of life: A comparison of persons
with psychiatric disabilities in housing programs and community residents who are neigh-
bours. Canadian Journal of Community Mental Health, 15(1), 5–20.
Bahora, M. M., Hanafi, S. S., Chien, V. H., & Compton, M. T. (2008). Preliminary evidence of effects
of crisis intervention team training on self-efficacy and social distance. Administration and
Policy in Mental Health, 35¸ 159–167.
Baker, F.,  & Douglas, C. (1990). Housing environments and community adjustment of severely
mentally ill persons. Community Mental Health Journal, 26(6), 497–505.
Beels, C. (1981). Social networks and the treatment of schizophrenia. International Journal of Family
Therapy, 3(4), 310–315.
Bond, G. R., Salyers, M. P., Rollins, A. L., Rapp, C. A., & Zipple, A. M. (2004). How evidence-based
practices contribute to community integration. Community Mental Health Journal, 40(6),
569–588.
Brown, C. (1996). A comparison of living situation and loneliness for people. Psychiatric
Rehabilitation Journal, 20(2), 59.
Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric disabili-
ties. New York: Guilford Press.
Carpiano, R. (2007). Neighborhood social capital and adult health:  An empirical test of a
Bourdieu-based model. Health & Place, 13(3), 639–655.
Chien, C.,  & Cole, J. (1973). Landlord-supervised cooperative apartments:  A  new modality for
community-based treatment. American Journal of Psychiatry, 130(2), 156–159.
Corrigan, P. (2004). How stigma interferes with mental health care. American Psychologist,
59(7), 614.
Corrigan, P., Rafacz, J., Hautamaki, J., Walton, J., Rüsch, N., Rao, D., . . . & Reeder, G. (2010).
Changing stigmatizing perceptions and recollections about mental illness:  The effects of
NAMI’s In Our Own Voice. Community Mental Health Journal, 46(5), 517–522.
Corrigan, P. & Watson, A. (2002). Understanding the impact of stigma on people with mental illness.
World Psychiatry: Official Journal Of The World Psychiatric Association (WPA), 1(1), 16–20.
Corrigan, P. W. (Ed.). (2005). On the stigma of mental illness: Practical strategies for research and social
change. Washington, DC: American Psychological Association.
Corrigan, P. W., & Penn, D. L. (1999). Lessons from social psychology on discrediting psychiatric
stigma. American Psychologist, 54(9), 765–776.
Crocker, J.,  & Major, B. (1989). Social stigma and self-esteem:  The self-protective properties of
stigma. Psychological Review, 96, 608–630.
Cunningham, K., Wolbert, R., Graziano, A., & Slocum, J. (2005). Acceptance and change: The dia-
lectic of recovery. Psychiatric Rehabilitation Journal, 29(2), 146–148.
Davidson, L. (2005). More fundamentally human than otherwise. Psychiatry:  Interpersonal  &
Biological Processes, 68(3), 243–249.
Davidson, L., Stayner, D. A., Nickou, C., Styron, T. H., Rowe, M., & Chinman, M. L. (2001). Simply
to be let in: Inclusion as a basis for recovery. Psychiatric Rehabilitation Journal, 24(4), 375–388.
Davidson, L.,  & Strauss, J.  S. (1995). Beyond the biopsychosocial model:  Integrating disorder,
health, and recovery. Psychiatry: Interpersonal and Biological Processes, 58, 44–55.
Dewees, M., Pulice, R. T., & McCormick, L. L. (1996). Community integration of former state hos-
pital patients: Outcomes of a policy shift in Vermont. Psychiatric Services, 47(10), 1088–1092.
Dickey, B., Gonzalez, O., Latimer, E., Powers, K., Schutt, R., & Goldfinger, S. (1996). Use of men-
tal health services by formerly homeless adults residing in group and independent housing.
Psychiatric Services, 47(2), 152–158.
Dickey, B., Latimer, E., Powers, K., Gonzalez, O., & Goldfinger, S. M. (1997). Housing costs for
adults who are mentally ill and formerly homeless. The Journal of Mental Health Administration,
24(3), 291–305.
224 Transformative Communit y Change

Diez Roux, A. V. (2001). Investigating neighborhood and area effects on health. American Journal of
Public Health, 91(11), 1783–1789.
Drake, R., Skinner, J., Bond, G., & Goldman, H. (2009). Social security and mental illness: Reducing
disability with supported employment. Health Affairs (Project Hope), 28(3), 761–770.
Earls, M.,  & Nelson, G. (1988). The relationship between long-term psychiatric clients’ psycho-
logical well-being and their perceptions of housing and social support. American Journal of
Community Psychology, 16(2), 279–293.
Eklund, M.,  & Hansson, L. (2007). Social network among people with persistent mental ill-
ness:  Associations with sociodemographic, clinical and health-related factors. International
Journal of Social Psychiatry, 53(4), 293–305.
Felce, D., Lowe, K.,  & Jones, E. (2002). Association between the provision characteristics and
operation of supported housing services and resident outcomes. Journal of Applied Research in
Intellectual Disabilities, 15(4), 404–418.
Frisman, L., Rodis, E., Kloos, B., Lin, H., & Kitchener, G. (2000, November). Assessing the validity of
cross-site findings: Insights from site-specific studies of housing and fidelity. Symposium presented
at the American Evaluation Association Annual Meeting, Honolulu, HI.
Gerber, G. J., Prince, P. N., Duffy, S., McDougall, L., Cooper, J., & Dowler, S. (2003). Adjustment,
integration, and quality of life among forensic patients receiving community outreach services.
International Journal of Forensic Mental Health, 2(2), 129–136.
Glynn, T.  J. (1986). Neighborhood and sense of community. Journal of Community Psychology,
14(4), 341–352.
Gulcur, L., Tsemberis, S., Stefancic, A., & Greenwood, R. M. (2007). Community integration of
adults with psychiatric disabilities and histories of homelessness. Community Mental Health
Journal, 43(3), 211–228.
Gur, O. M. (2010). Persons with mental illness in the criminal justice system: Police interventions
to prevent violent criminalization. Journal of Police Crisis Negotiations, 10, 220–240.
Harkness, J., Newman, S., & Salever, D. (2004). The cost-effectiveness of independent housing for
the chronically mentally ill: Do housing and neighborhood features matter? Health Services
Research, 39(5), 1341–1360.
Hendryx, M., Green, C., & Perrin, N. (2009). Social support, activities, and recovery from serious
mental illness: STARS study findings. Journal of Behavioral Health Services & Research, 36(3),
320–329.
Hiday, V. A., Swartz, M. S., Swanson, J. W., Borum, R., & Wagner, H. R. (1997). Criminal victimiza-
tion of persons with severe mental illness. Psychiatric Services, 50(1), 62–68.
Hogan, M.  F. (2003). New Freedom Commission report:  The president's New Freedom
Commission:  recommendations to transform mental health care in America. Psychiatric
Services, 54(11), 1467–1474.
Hurlburt, M. S., Wood, P. A., & Hough, R. L. (1996). Providing independent housing for the home-
less mentally ill:  A  novel approach to evaluating long-term longitudinal housing patterns.
Journal of Community Psychology, 24(3), 291–310.
Jivanjee, P., Kruzich, J., & Gordon, L. (2008). Community integration of transition-age individu-
als:  Views of young with mental health disorders. Journal of Behavioral Health Services  &
Research, 35(4), 402–418.
Kloos, B. (2000, February). Tenant housing & neighborhood survey (THNS): Relationships with neigh-
bors and landlords. In V. Skyrha (Chair), A look at supported housing and comparison approaches
in a multi-site collaborative study. Symposium conducted at the annual meeting of the National
Association of State Mental Health Program Directors Research Institute, Washington, DC
Kloos, B. (2010). Creating new possibilities for promoting liberation, well-being, and recov-
ery:  Learning from experiences of psychiatric consumers/survivors. In G. Nelson  & I.
Prilleltensky (Eds.), Community psychology: In pursuit of liberation and well-being (2nd ed., pp.
453–476). London: MacMillan.
Kloos, B., Scrimenti, K., Masson, N., Ottenheimer, S., Davis, B. A., & Snow, S. L. (2012). Developing
a tenant organization as a resource for supported housing. In C. Walker, K. Johnson,  & L.
 R ecover ing Communit y in Me ntal Health 225

Cunningham (Eds.). Community psychology and the economics of mental health: Global perspec-
tives (pp. 206–221). London: Palgrave Macmillan.
Kloos, B., & Townley, G. (2011). Investigating the relationship between neighborhood experiences
and psychiatric distress for individuals with serious mental illness. Administration & Policy in
Mental Health & Mental Health Services Research, 38(2), 105–116.
Kloos, B., Zimmerman, S., Scrimenti, K., & Crusto, C. (2002). Landlords as partners for promoting
success in supported housing: “It takes more than a lease and a key.” Psychiatric Rehabilitation
Journal, 25(3), 235–244.
Kretzmann, J. P., & McKnight, J. L. (1993). Building communities from the inside out: A path toward
findings and mobilizing a community’s assets. Evanston, IL: Institute for Policy Research.
Kruzich, J. M. (1985). Community integration of the mentally ill in residential facilities. American
Journal of Community Psychology, 13(5), 553–564.
Lattimore, P. K., Broner, N., Sherman, R., Frisman, L., & Shafer, M. S. (2003). A comparison of
prebooking and postbooking diversion programs for mentally ill substance-using individuals
with justice involvement. Journal of Contemporary Criminal Justice, 19, 30–64.
Lemaire, G.,  & Mallik, K. (2005). Barriers to community integration for participants in
community-based psychiatric rehabilitation. Archives of Psychiatric Nursing, 19(3), 125–132.
Link, B. G. (1987). Understanding labeling effects in the area of mental disorders: An assessment of
the effects of expectations of rejection. American Sociological Review, 5, 296–112.
Link, B. G., Phelan, J. C., & Bresnahan, M. (1999). Public conceptions of mental illness: Labels,
causes, dangerousness, and social distance. American Journal of Public Health, 89(9),
1328–1333.
Link, B. G., Struening, E. L., Neese-Todd, S., Asmussen, S., & Phelan, J. C. (2001). Stigma as a bar-
rier to recovery: The consequences of stigma for the self-esteem of people with mental illness.
Psychiatric Services, 52(12), 1621–1626.
McCormick, B. P., Funderburk, J. A., Lee, Y., & Hale-Fought, M. (2005). Activity characteristics and
emotional experience: Predicting boredom and anxiety in the daily life of community mental
health clients. Journal of Leisure Research, 37(2), 236–253.
McKnight, J.,  & Block, P. (2010). The abundant community:  Awakening the power of families and
neighborhoods. San Francisco: Berrett-Koehler.
Nagy, M.  P., Fisher, G.  A.,  & Tessler, R.  C. 1988). Effects of facility characteristics on the social
adjustment of mentally ill residents of board-and-care homes. Psychiatric Services, 39(12),
1281–1286.
Nelson, G., Lord, J.,  & Ochocka, J. (2001). Empowerment and mental health in commu-
nity:  Narratives of psychiatric consumer/survivors. Journal of Community  & Applied Social
Psychology, 11(2), 125–142.
Newman, S. J. (1994). The housing and neighborhood conditions of persons with severe mental
illness. Psychiatric Services, 45(4), 338–343.
Newman, S. (2001). Housing attributes and serious mental illness: Implications for research and
practice. Psychiatric Services, 52(10), 1309–1317.
Newman, S., Harkness, J., Galster, G., & Reschovsky, J. (2001). Bricks and behavior: The repair and
maintenance costs of housing for persons with mental illness. Real Estate Economics, 29(2), 277.
Newman, S., & Goldman, H. (2009). Housing policy for persons with severe mental illness. Policy
Studies Journal, 37(2), 299–324.
Newman, S. J., Reschovsky, J. D., Kaneda, K., & Hendrick, A. M. (1994). The effects of independent
living on persons with chronic mental illness: An assessment of the Section 8 certificate pro-
gram. The Milbank Quarterly, 171–198.
Partington, K. (2005). What do we mean by our community? Journal of Intellectual Disabilities, 9(3),
241–251.
Prince, P. N., & Gerber, G. J. (2005). Subjective well-being and community integration among cli-
ents of assertive community treatment. Quality of Life Research, 14(1), 161–169.
Prince, P., & Prince, C. (2002). Perceived stigma and community integration among clients of asser-
tive community treatment. Psychiatric Rehabilitation Journal, 25(4), 323–331.
226 Transformative Communit y Change

Ridgeway, P., & Zipple, A. (1990). Challenges and strategies for implementing supported housing.
Psychosocial Rehabilitation Journal, 13(4), 115–120.
Rog, D.  J. (2004). The evidence on supported housing. Psychiatric Rehabilitation Journal, 27(4),
334–344.
Ross, C. E. (2000). Neighborhood disadvantage and adult depression. Journal of Health & Social
Behavior, 4(2), 177–187.
Rowe, M., Kloos, B., Chinman, M., Davidson, L., & Cross, A. (2001). Homelessness, mental illness
and citizenship. Social Policy & Administration, 35(1), 14–31.
Salzer, M.,  & Baron, R. (2006). Community integration and measuring participation. Retrieved
January 4, 2012 from www.tucollaborative.org/pdfs/Toolkits_Monographs_Guidebooks/
measuring_community_inclusion/CI_and_Measuring_Participation.pdf.
Segal, S., Silverman, C., & Temkin, T. (1997). Social networks and psychological disability among
housed and homeless users of self-help agencies. Social Work in Health Care, 25(3), 49–61.
Schwartz, C., & Gronemann, O. (2009). The contribution of self-efficacy, social support and partici-
pation in the community to predicting loneliness among persons with schizophrenia living in
supported residences. Israel Journal of Psychiatry & Related Sciences, 46(2), 120–129.
Siegel, C., Samuels, J., Tang, D., Berg, I., Jones, K.,  & Hopper, K. (2006). Tenant outcomes in
supported housing and community residences in New York City. Psychiatric Services, 57(7),
982–991.
Shern, D.  L., Felton, C.  J., Hough, R.  L., Lehman, A.  F., Goldfinger, S., Valencia, E.,  & Wood,
P.  A. (1997). Housing outcomes for homeless adults with mental illness:  Results from the
Second-Round McKinney Program. Psychiatric Services, 48(2), 239–241.
Shinn, M.,  & Toohey, S.  M. (2003). Community contexts of human welfare. Annual Review of
Psychology, 54, 427–459.
Silverman, C. J., & Segal, S. P. (1994). Who belongs? An analysis of ex-mental patients’ subjective
involvement in the neighborhood. Adult Residential Care Journal, 8(2), 103–113.
South Carolina Department of Mental Health. (2011). Palmetto Media Watch. Retrieved December
15, 2011, from www.state.sc.us/dmh/pmw-website.htm
Stein, L. L., & Santos, A. B. (1998). Assertive community treatment of persons with severe mental illness.
New York: W.W. Norton.
Sugiyama, T., Leslie, E., Giles-Corti, B., & Owen, N. (2008). Associations of neighbourhood green-
ness with physical and mental health: Do walking, social coherence and local social interaction
explain the relationships? Journal of Epidemiology & Community Health, 62(5), e9.
Townend, M.,  & Braithwaite, T. (2002). Mental health research-the value of user involvement.
Journal of Mental Health, 11, 117–119.
Trainor, J., Pomeroy, E., & Pape, B. (1993). A new framework for support. Toronto: Canadian Mental
Health Association.
Truman, B., & Hartenstein, J. (1990). The benevolent landlord: An open door not a revolving one.
Journal of the California Alliance of the Mentally Ill, 1(2), 13–14.
Tsemberis, S. (1999). From streets to homes:  An innovative approach to supported housing for
homeless adults with psychiatric disabilities. Journal of Community Psychology, 27(2), 225–241.
Wahl, O. E., Wood, A., & Richards, R. (2002). Newspaper coverage of mental illness: Is it changing?
Psychiatric Rehabilitation Skills, 6, 9–31.
Wandersman, A., Florin, P., Friedmann, R., & Meier, R. (1987). Who participates, who does not,
and why? An analysis of voluntary neighborhood organizations in the United States and Israel.
Sociological Forum, 2(3), 534.
Ware, N., Hopper, K., Tugenberg, T., Dickey, B., & Fisher, D. (2007). Connectedness and citizen-
ship: Redefining social integration. Psychiatric Services, 58(4), 469–474.
Ware, N., Hopper, K., Tugenberg, T., Dickey, B., & Fisher, D. (2008). A theory of social integration
as quality of life. Psychiatric Services, 59(1), 27–33.
White, G., Simpson, J., Gonda, C., Ravesloot, C., & Coble, Z. (2010). Moving from independence
to interdependence: A conceptual model for better understanding community participation of
centers for independent living consumers. Journal of Disability Policy Studies, 20(4), 233–240.
 R ecover ing Communit y in Me ntal Health 227

Wieland, M., Rosenstock, J., Kelsey, S., Ganguli, M., & Wisniewski, S. (2007). Distal support and
community living among individuals diagnosed with schizophrenia and schizoaffective disor-
der. Psychiatry: Interpersonal & Biological Processes, 70(1), 1–11.
World Health Organization. (2010, September 30). Mental health: Strengthening our response. Fact
sheet number 220. Retrieved from www.who.int/mediacentre/factsheets/fs220/en/
Wong, Y., Metzendorf, D., & Min, S. (2006). Neighborhood experiences and community integra-
tion: Perspectives from mental health consumers and providers. Social Work in Mental Health,
4(3), 45–59.
Wong, Y., & Solomon, P. L. (2002). Community integration of persons with psychiatric disabilities
in supportive independent housing: A conceptual model and methodological considerations.
Mental Health Services Research, 4(1), 13–28.
Wong, Y. L., & Stanhope, V. (2009). Conceptualizing community: a comparison of neighborhood
characteristics of supportive housing for persons with psychiatric and developmental disabili-
ties. Social Science & Medicine, 68(8), 1376–1387.
Yanos, P. (2007). Beyond “Landscapes of Despair”: The need for new research on the urban environ-
ment, sprawl, and the community integration of persons with severe mental illness. Health &
Place, 13(3), 672–676.
Yanos, P., Barrow, S., & Tsemberis, S. (2004). Community integration in the early phase of hous-
ing among homeless persons diagnosed with severe mental illness: Successes and challenges.
Community Mental Health Journal, 40(2), 133–150.
Yanos, P., Felton, B., Tsemberis, S., & Frye, V. (2007). Exploring the role of housing type, neighbor-
hood characteristics, and lifestyle factors in the community integration of formerly homeless
persons diagnosed with mental illness. Journal of Mental Health, 16(6), 703–717.
Yeich, S., Mowbray, C., Bybee, D.,  & Cohen, E. (1994). The case for a “supported housing”
approach: A study of consumer housing and support preferences. Psychosocial Rehabilitation
Journal, 18(2), 75–86.
Yohe, G., & Tol, R. J. (2002). Indicators for social and economic coping capacity—moving toward a
working definition of adaptive capacity. Global Environmental Change Part A: Human & Policy
Dimensions, 12(1), 25.
 11

Who Is John?
Community Integration as a Paradigm for Transformative
Change in Community Mental Health
mark s. salzer and richard c. baron

The campaign for transformation in community mental health (CMH) from an

era of stabilization and maintenance is increasingly using the battle cry of “recov-
ery,” which has been universally adopted by people in recovery, family members,
providers, policy makers, and academics in exploring how to take important first
steps toward creating “recovery-oriented systems.” Nonetheless, the conceptual
foundation underlying this transformation remains unsteady:  numerous defini-
tions of recovery and its principles abound, and the changes that are occurring are
uneven and—we must acknowledge—sometimes superficial. There are legitimate
fears that changes being made in the name of recovery may indeed be “just old wine
in a new bottle” (Davidson, O’Connell, Tondora, Lawless, & Evans, 2005) despite
efforts to the contrary.
It is argued here that although the critically important concepts and principles
of recovery may be resulting in ameliorative, first-order change—such as changes in
strategies that increase opportunities for self-determination for people in recovery,
expansion of peer support initiatives, or altered funding priorities that support new
programs and new “recovery-oriented” training—these changes remain embed-
ded in current conceptual frameworks and approaches (Watzlawick, Weakland, &
Fisch, 1974). The basic philosophical underpinnings associated with these systems
and programs remain the same. More in-depth discussion of this possibility is
needed; this cannot be fully accomplished in this chapter, but it is arguable that the
recovery-based transformation that is occurring remains embedded in a medically
based, illness-oriented paradigm, at least for many.
This possibility is clearly evident in two perspectives on recovery (Bellack,
2006), both of which use “illness” as a reference point. The first is referred to as
a medically oriented perspective and touts evidence for the reality of recovery based

228
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 229

on findings that many individuals with severe mental illnesses experience reduced
symptoms, take fewer or no medications, and have fewer hospitalizations over time.
The contribution of this perspective is that, contrary to traditional opinions, severe
mental illnesses are not necessarily associated with chronic and permanent impair-
ments. The second is referred to as the consumer-oriented perspective and includes
the concept of living a satisfying, fulfilling, and hopeful life with or without the
symptoms of one’s illness and the “development of new meaning and purpose as
one grows beyond the catastrophic effects of mental illness” (Anthony, 1993, p. 15).
Illness remains central in both of these perspectives, thereby retaining the centrality
of illness in the system changes that they inspire.
Second-order change—that is, real transformative change—reflects a change in
philosophy, rather than simply new strategies or programs, and seeks to reframe
the problem, exploring and challenging underlying assumptions and paradigms
(Seidman  & Rappaport, 1986). This is what is needed in CMH and, one might
argue, has not happened with change based on the concept of recovery. An alter-
native, complementary concept for transformation does exist: community integra-
tion. Community integration (Nelson, Lord, & Ochocka, 2001) is embedded in a
rich philosophical tradition that may inspire the type of revolutionary transforma-
tion needed. This concept is grounded in social justice and rights, a different phi-
losophy than that which currently exists in current transformation efforts, and it has
had a significant impact on the systems that support individuals who experience
physical, sensory, intellectual, and developmental disabilities.
The goal of this chapter is to introduce concepts and frameworks associated
with community integration that are embedded in a disability rights framework
and discuss their implications for changing policies, services, and supports in a
way that will truly transform CMH. Widespread adoption will require substan-
tial changes in thinking, both about people who experience mental illnesses and
how we think about enhancing their health and quality of life—a true paradigm
shift. To accomplish this, we begin by exploring narratives about people with
“mental illnesses” and then discuss these narratives in the context of community
integration. This is followed by the presentation of a new conceptual paradigm,
the International Classification of Functioning developed by the World Health
Organization (WHO, 2001), that offers a more holistic and biopsychosocial
understanding of human functioning and fundamental principles for developing
community integration-oriented systems. Finally, we end by discussing some chal-
lenges that are raised by these principles.

Who Is John?: Changing Our Narratives

In 2004, the Commonwealth of Pennsylvania received a grant from the Center for
Medicaid and Medicare Services for a demonstration project aimed at bringing
230 Transformative Communit y Change

Medicaid billable peer specialist services into the mental health system (Salzer
et al., 2009; Salzer, 2010). Peers have worked to varying degrees outside and within
­mental health systems for decades, but recent “recovery-oriented” transformation
initiatives have greatly expanded the hiring of certified peer specialists within the
system. The addition of peers to the behavioral health workforce was a major trans-
formative change in the Pennsylvania mental health system. Successful implementa-
tion in Pennsylvania, including appropriate definitions of job responsibilities, hiring
issues, and acceptance by the nonpeer behavioral health workforce, was believed to
require a change in how people with mental illnesses are viewed by providers, policy
makers, and consumers themselves.
To understand these existing perspectives or schemas, at the time that the ini-
tiative began, we employed a narrative approach used in previous research (e.g.,
Mankowski  & Thomas, 2000; Rappaport, 2000; Salzer, 1998). Attendees at the
kickoff event, including providers, policy makers, and consumers from the counties
involved, were asked to write a story in response to the following prompt:

Please write a story about a man named John who is 38 years old and has
been diagnosed with schizophrenia. Your story can include anything about
how John thinks, feels, or behaves. The story should have a beginning, a
middle, and an ending. Start your story with: Once upon a time. . .

Two basic types of stories emerged. The following type of story exemplifies sche-
mas that we believe underlie the reductionist era of CMH services:

John was released from the hospital. John got a room at the YMCA. Once
a month he would get a phone call from his caseworker. John would spend
most of the day sitting in his room. John was afraid to go outside as he felt
people were looking at him or talking about him. When John was in the
hospital he sometimes felt the same way but not always. At the hospital
they gave him pills and there were people who talked to him, sometimes
this made him feel better. John had doctor appointments once a month
at the clinic, sometimes he would go, sometimes he wouldn’t because he
forgot. They would also give him pills which he would take sometimes but
other times he would forget or he couldn’t find them. John thought people
were breaking into his room and stealing them. As John got lonelier and
more scared he just stayed in his room. He didn’t bathe or shave or wash
his clothes. When he did leave his room people would point and talk about
him because he was dirty and smelled. One day John went out and when
people started pointing at him he yelled at them and threatened them.
They called the police who arrested him. After a few days in jail John had
a hearing and was sent back to the hospital. This made John feel better. He
once again had people who cared about him.
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 231

In this story, the focus is on illness and symptoms (fear, loneliness, hygiene), vio-
lence, criminal justice involvement, pills, nonadherence, and hospitalizations. The
tone is one of hopelessness and chronicity, and the target of services is stabilization
and maintenance to keep John out of harm’s way. This is referred to as a “John the
patient” story.
An exemplar of a second type of story offers a different schema, one that views
John as a person and focuses on the hopes, dreams, and desires that contribute to
his quality of life:

John lived in his country home with his parents and three older siblings.
As the youngest child, with three older sisters, he was the center of his
family’s attention for many years and enjoyed being the focus of their
lives. He was not at all thrilled with the idea of leaving this nurturing
environment to enter school, where other children often made fun of
him and teased him, but he did! His high school years weren’t especially
enjoyable, especially compared to his beginning life experiences within
his family, so he was excited about the opportunity to begin working at
the local McDonald’s after graduation. John is not very interested in talk-
ing about the time of high school graduation until now, saying that it
has been a very difficult struggle, one in which he watched both of his
parents die of cancer within two years of each other, and his other three
sisters become further distant in his life. He talks briefly about receiving
a diagnosis of schizophrenia, the many doctors, counselors and hospi-
tals, all of which had different labels and treatments for the problems he
kept finding himself in, but he prefers now to focus on his new, one-room
apt. that he’s just moved to, and the fact that he is the short-order cook at
the local Friendly’s working 15 hours a week. John thinks about asking,
Mary, a waitress on a date, going to his sister’s home for a Memorial Day
picnic, and saving enough money to buy a cassette player. John is a 38
yr. old man who dreams about finding a girlfriend, working more hours,
managing his finances, seeing his sisters more, and keeping his current
apartment.

Illness and diagnosis are not ignored in this story, but they are discussed in
the context of his life, his relationships with others, and his community. John’s
hopes, dreams, and desires for a life in the community, including work, dating,
and recreation, are the central focus and outcomes of interest. Illness is viewed as
part of his life but not as his life. We call this a “John the person” story. The schema
represented in this type of story is in line with a long-standing orientation in the
larger disability field—the promotion of life in the community for people who
experience disabilities—and offers a narrative for second-order transformation
in CMH.
232 Transformative Communit y Change

“John the Person” and Community Integration

Viewing individuals with mental illnesses as whole persons who desire to live in the
community like everyone else is vital to the concept of community integration that
emerged from the Danish “Normalization Movement” for persons with intellec-
tual and developmental disabilities in the 1950s (Wolfensberger 1970; 1972). The
Normalization Movement promoted the design of human services in such a way as
to enable those with disabilities “to function in ways considered to be within the
acceptable norms of his/her society” (Wolfensberger, 1970, p. 67). Nirje (1980)
defined normalization in terms of “making available to all mentally retarded people
patterns of life and conditions of everyday living which are as close as possible to
the regular circumstances and ways of life of society” (p. 33). In both of these defi-
nitions, community integration is understood as the extent to which people have
the opportunity to participate fully in the community to the same extent as other
citizens.
A powerful and persuasive disability rights movement emerged out of this new
understanding of disability and successfully advocated for the Americans with
Disabilities Act (ADA; 1990). Title II of the Act “requires governments to give peo-
ple with disabilities an equal opportunity to benefit from all programs, services, and
activities (e.g., education, employment, voting, transportation, recreation, etc.),”
thereby grounding the promotion of community integration in law. Questions were
raised about the applicability of the ADA to persons with psychiatric disabilities,
potentially reflecting segregation within the disability community itself, which is an
intriguing side story of its own. But such notions were set aside by the 1999 ruling
of the US Supreme Court in what is known as the Olmstead decision, in which the
court ruled in favor of Elaine Wilson and Lois Curtis, two individuals who expe-
rience co-occurring psychiatric and developmental disabilities, who claimed that
they were unjustly being confined in an institution rather than being allowed to live
in a community-based setting. The court concluded that unnecessary institutional-
ization is a form of discrimination prohibited by the ADA.
The result of this legislative act and judicial ruling has been the establishment
of community integration as an inherent right for all people who experience dis-
abilities, expanding their right to live, study, work, and recreate alongside and in the
same manner as people without disabilities (Racino, 1995). From these previous
rights frameworks and legislative and judicial acts emerge a definition of commu-
nity integration as “the opportunity to live in the community, and be valued for one’s
uniquenesses and abilities, like everyone else,” as well as the notion that it is the pro-
motion of “opportunity” that facilitates community participation, well-being, and
recovery (Salzer, 2006, p. 1).
Community inclusion, rather than community integration or recovery, has been
the concept most commonly adopted by reformers outside of North America.
From this perspective, people with disabilities experience exclusion from active
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 233

participation in society by “normal”-minded and “normal”-bodied dominant group

members (Harlan & Robert, 1998) through “patterns of dominance and oppres-
sion, viewed as expressions of a struggle for power and privilege” (Marshall, 1994,
pp. 125–126). Such exclusion occurs through attitudinal, structural, and physical
barriers and “is a form of social oppression on a par with other forms of oppression
in our society associated with gender, race, class, and sexuality” (Thomas, 2004,
p.  581). Community inclusion falls within a Foucaultian (1964) understanding
that individuals with psychiatric disabilities are routinely and actively segregated
from civilization. The approaches to promoting community integration that are pre-
sented later in this chapter are in line with promoting community inclusion, with
the addition of an even greater emphasis being placed on the need to address exclu-
sionary barriers and to undertake more active inclusion efforts that extend beyond
mere accommodation.

Changing Paradigms of Functioning

Changing our paradigm from “John as a patient” to “John as a person” requires mov-
ing from a narrow, illness-focused view of functioning to a more holistic orientation
that understands John as a self-determined, multidimensional individual who lives
in a complex environment that he influences and, in return, is influenced by. The
WHO developed such a framework for understanding health, disease, and func-
tioning, commonly referred to as the International Classification of Functioning
(ICF; WHO, 2001).
The ICF is revolutionary in several ways. First, it identifies three distinct compo-
nents of functioning: (a) body function and structure, which refers to bodily impair-
ment or symptoms; (b) activities, which are defined as “the execution of a task or
action by an individual” (which includes those tasks associated with activities of daily
living); and (c) participation, which is defined as “involvement in a life situation” and
is specifically separated from activities. Participation refers to natural engagements,
rather than contrived or manufactured events, in one of four social life domains that
typically involve interaction with others in community-based contexts: (a) domestic
life; (b) interpersonal life (including formal relationships as well as informal social
relationships, family relationships, and intimate relationships); (c) major life activi-
ties consisting of education (informal, vocational training, and higher education)
and employment (remunerative and nonremunerative, excluding domestic work);
and (d) community, civic, and social life, including religion, politics, recreation and
leisure, hobbies, socializing, sports, arts, and culture. Although all three components
are obviously important, participation is recognized as the domain valued most by
people with disabilities, their family members, and society (Whiteneck, 2006).
Second, the three functional components—body function and structure, activ-
ity, and participation—are understood within the ICF framework as affecting one
234 Transformative Communit y Change

another, with the unique appreciation that their effects are bidirectional, not unidi-
rectional. Traditionally, impairments associated with illness are viewed as driving all
functioning. For example, body function and structure (e.g., brain differences, neu-
rocognitive impairments, and psychiatric symptoms) affects one’s abilities to suc-
cessfully engage in activity (e.g., grooming, caring for one’s home, shopping), which
then affects the ability to participate (e.g., work, dating, friendships). However, the
ICF postulates that a positive change in participation, for example, also positively
affects one’s ability to engage in activities, which ultimately improves body function
and structure.
Third, it follows from this second principle that body function and structure,
activities, and participation are independently targetable and attainable functional
outcomes. For example, if we desire to promote participation, such as work, then
addressing the more proximal factors associated with work can, and likely should,
be the focal point of change, and success can be achieved without necessarily first
correcting body function and structure or activity. One can see this principle at
work as we increasingly find that people with significant mental illnesses are still
able to work and otherwise participate in meaningful life domains even though
experiencing symptoms and problems and struggling with some activities of daily
living. Moreover, it recognizes that the illness-driven perspective that prioritizes
correcting body function and structure issue, such as using medications, therapies,
and/or neurocognitive training, as necessary (and possibly sufficient) first steps to
achieving success in the areas of activity and participation are likely neither neces-
sary nor sufficient.
Fourth, the ICF reflects a dramatic shift in the conceptualization of disability
as a socioecological rather than an intraindividual phenomenon. The reductionist,
individual model of disability views “the ‘problem’ of disability within the individ-
ual and . . . sees the causes of this problem as stemming from functional limitations”
that are thought to directly arise from the impairment or illness (Oliver, 1996,
p. 32). An example of this orientation is interpreting the unemployment of some-
one diagnosed with schizophrenia as primarily or exclusively due to the individual’s
impairments, such as cognitive or social deficits, that are believed to limit his or her
ability to work. In contrast, the social or contextual model of disability does not
deny impairments, but recognizes that “disablement,” or limited activity and com-
munity participation, results from a society that fails to ensure opportunities for
full and meaningful roles for all its citizens (Oliver, 1996). Disability is viewed as
resulting from a person–environment interaction that does not maximize opportu-
nities for full community participation. This is similar to a perspective on disability
as “capabilities deprivation” from the perspective of capabilities theory that “limits
a person’s ability to make valued choices and participate fully in society” (Hopper,
2007, p. 874).
From this orientation, unemployment experienced by an individual diagnosed
with schizophrenia is viewed as resulting from the interplay between the individual’s
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 235

impairments and an environment that may not be able to or is unwilling to accom-

modate the individual’s uniqueness, including impairments, in order to increase
opportunities for that person to work to the best of his or her capabilities. The envi-
ronment is viewed as a source of disablement. Examples of a disabling environment
are discrimination toward individuals with impairments and discouraging individ-
uals to engage in community life. Disability from the social model standpoint is
not something that someone is (i.e., person with a mental illness or disability), but
instead something that is experienced (i.e., people experience a disability).

Community Integration-Oriented Systems

Opportunity for Full and Meaningful Lives
A CMH system oriented around promoting community integration would look
more like those systems that have been developed to support other disability popu-
lations (such as the national network of Centers for Independent Living) and less
like community-based medical centers. Such a system would be committed to
expanding opportunities for lives in the community that are like everyone else’s, in
all life domains, and to expanding the opportunity for maximum self-determination,
defined as “acting as the primary causal agent in one’s life and making choices and
decisions regarding one’s quality of life free from undue external influence or inter-
ference” (Wehmeyer, 1996, p. 24), a definition that leaves to individuals the respon-
sibility for prioritizing the types of participation that are most meaningful to them
and determining the degree to which they wish to participate.
The goals of such a system would include:

• Housing: People live where they choose to live and can afford to live, choosing
neighborhoods, residential settings, roommates and/or relatives, and access to
local housing resources in ways that suit them.
• Employment: People seek out work opportunities that make good use of their
knowledge and skills, pay them a prevailing wage, and provide real medical ben-
efits, as well as opportunities for advancement in their chosen careers.
• Education: People pursue their own educational goals, seeking personal growth
and/or career training.
• Social and intimate relationships: People establish an individual balance of friend-
ships with others who may or may not have psychiatric disabilities, and both
draw on those friendships for support and reciprocate as they can. People also
have the opportunity to pursue, enjoy, and benefit from romantic and intimate
relationships.
• Family relationships: People draw on the nurturing aspects of their given or cho-
sen families and contribute to family life by playing normal supportive roles as
parents, siblings, and children in the lives of those they love.
236 Transformative Communit y Change

• Peer relationships: People have the opportunity both to benefit from the expe-
riences and assistance of others with psychiatric disabilities—both from peer
counselors and peer run programs—and to serve as peer staff and peer volun-
teers themselves.
• Religion and spirituality: People have the opportunity to participate in the reli-
gious and spiritual activities they find most supportive, drawing on and giving to
the life of congregations.
• Leisure and recreation: People have the opportunity to participate in a wide range
of hobbies, sports, travel, and artistic endeavors in their communities, and both
enjoy and contribute to these activities.
• Civic life: People have the opportunity to participate in a wide range of civic
activities, serving as volunteers, advocates, and voters who shape and strengthen
their communities.
• Health and wellness: People both receive the quality of health care needed to
sustain healthy lives and take responsibility for maintaining their own, and their
loved ones, physical and emotional health.
• Finances: People manage their own finances, with whatever help and assistance
they choose, making individual choices about earnings, expenditures, and
savings.

The basic framework for promoting opportunities in each of these domains is

grounded in the social model of disability and the ICF framework and is, more
recently, touted from a capability theory orientation (Mitra, 2006). This ecological
model recognizes disability as the lack of opportunity for participation that results
from an interplay between environmental or external factors (referred to as barri-
ers) and individual characteristics (strengths and impairments). Opportunity is
understood to vary by domain. That is, an individual may have more opportunity in
the areas of housing and employment, but less in leisure and recreation or spiritu-
ality/religion. However, opportunity across domains may not necessarily be inde-
pendent. For example, certain external barriers and individual impairments may
similarly affect opportunity in multiple domains. The ultimate goal of community
integration at the individual level is to promote opportunity to a point that enables
participation across all domains but with the understanding that the degree of sub-
sequent participation is not the definitive metric for assessing success. Individual
choice and self-determination about the types and degree of participation is para-
mount in a community integration framework: mandating participation runs coun-
ter to community integration principles.
At the core of such systems would be policies, programs, and practices that
address individual needs to facilitate participation, which can include medications,
therapy, skills training, and community-based rehabilitation supports. Efforts at the
agency, program, and practice levels must also be undertaken to identify exclusion-
ary barriers to participation, such as prejudice and discrimination, poverty, and
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 237

lack of access to resources, and to eliminate them through partnerships, education,

accommodations, or legal action.

Participation More or Less Like Everyone Else

When raising questions concerning a mandate for community participation, one
can expect the reply that our systems and programs are already focused on promot-
ing participation, including employment, education, leisure and recreation, and
other domains. And although we applaud the opportunities for participation that
are being offered, we find it useful to describe three dimensions of participation that
help providers and consumers better assess policies, programs, and practices along
a continuum of participation. The overarching goal is to provide opportunities for
participation that are more like everyone else’s on each dimension.
The first dimension is location; that is, “where” the participation takes place.
The opposing endpoints on the continuum are participation that takes place within
mental health institutions and programs and participation that are more genuinely
community-based. Examples of participation within mental health programs would
include sheltered workshops; in-house vocational training or General Educational
Development (GED) classes; or agency-based dances, movie nights, and exercise
classes. Examples of community-based participation in these same areas are com-
petitive employment, taking educational courses or being enrolled in degree-earning
programs at local colleges, vocational training programs that are available everyone
in the community, going to bingo or other recreational events at a local church or
community center, joining a hobby club or citizen action group, and working out at
a local gym.
The second dimension concerns around whom the participation is centered,
with the opposing endpoints being program/staff-centered or person-centered.
Examples of participation that is more program/staff-centered include work in
a transitional employment program in which the job is “owned” by the program
rather than the individual, any educational or leisure group that is based on staff
knowledge or skill rather than the explicit desire of participants, group-based events
due to ticket availability or staffing needs, and choices that are restricted by what is
known to staff. Person-centered participation is that which occurs by fully soliciting
an individual’s hopes, dreams, and desires, and then responds with individualized
supports to achieve them.
The third dimension, consistent with the aforementioned US Department of
Justice integration regulation, refers to the opportunity to interact with citizens who
do not experience disabilities. The opposing endpoints on this dimension are partic-
ipation primarily with other persons who experience psychiatric disabilities (sepa-
ration) versus participation that primarily promotes interactions with other persons
who do not experience disabilities (association). Participation that occurs within an
institution/agency is de facto separatist, as are, for example, dating websites that are
238 Transformative Communit y Change

exclusively for people with mental illnesses and events where groups of individu-
als who experience psychiatric disabilities go out into the community together to
participate in organized activities. Opportunities for association result from engage-
ment in mainstream, community-based activities as an individual or with friends
and family members of one’s choosing.

Building Natural Supports

Medically based supports, like CMH systems, are based on expert knowledge acquired
through professional training by those who provide treatment and support services
for pay. Although mental health personnel can and must focus more of their efforts on
promoting community participation, there will never be enough paid staff—whether
peer or nonpeer professionals—to fully offer the individualized supports needed or
to address the external barriers to integration, efforts that are necessary to fully pro-
mote community integration. Moreover, the belief that expanding the hiring of paid
staff as a necessary condition for promoting community integration may, in fact, be
counterproductive to achieving that end goal:  to some degree, paid supports are
unlike supports that are available to everyone else, and paid supports may inherently
limit opportunities for self-determination and reciprocity. Mental health systems can
do more to help build the “natural supports” provided by family members, nonpaid
peers, friends, neighbors, significant others, and even casual relationships.
Unfortunately, people with psychiatric disabilities, compared to the general
population, tend to have dramatically fewer people in their social networks, and
many of those they rely on, because of the dependent systems we have created, are
human service professionals (Boydell, Gladstone, & Crawford, 2002). It is not hard
to understand why:  many individuals with psychiatric disabilities have strained
relationships with family members and have watched prior friendships wither away,
while limited or interrupted job histories and a transitory residential status have
made the development of natural support networks still more difficult. These are
the reasons, it could be argued, that “separate” supports and services continue to
play such a strong role in the lives of those with psychiatric disabilities: we create a
separate social network to compensate for one that has not fully developed due to
impairments and exclusion.
Building strong natural supports—strengthening the social networks of those
with psychiatric disabilities—may require a new understanding of the concept of
“reciprocity.” Social networks that function best may be those in which there is strong
reciprocity—a “give” as well as a “take”—and this ready exchange of emotional sup-
port, material aid, or information about a job, an empty apartment, or a good law-
yer has to work both ways. One might ask, in relation to the network of supports
and services we seek to provide to people who experience psychiatric disabilities,
whether we have gone too far in placing clients at the center of the network with-
out giving enough consideration to their capacity and need to reciprocate. We ask
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 239

family members to be more supportive, neighbors to be more accepting, co-workers

to make reasonable accommodations, and religious and interest groups to set aside
their prejudices; but it is not—a community integration approach suggests—all that
common that we ask the individual with a psychiatric disability to carry his or her
own weight in those relationships if we are serious about building natural supports.

Utilizing Mainstream Resources

As with the need for natural, unpaid supports to achieve community integration,
there also is a need to recognize that we will never have enough resources within
CMH to achieve this goal. The limited funds that are available within the system
for employment supports, for example, pale in comparison to that available to
all other citizens who are seeking to find new and better jobs and who can turn
to a vast network of employment and training programs available in every com-
munity. Community resources untethered to mental health systems are also avail-
able to meet citizens’ housing, education, leisure and recreational, dating, parenting
resources, and financial needs.
Community mental health has become so segregated from the larger community
that it is not always knowledgeable of these resources and may view them as hostile
or otherwise inaccessible or inappropriate for citizens who experience psychiatric
disabilities. An alternative to these mainstream resources was created in the 1960s
and 1970s as part of the psychiatric rehabilitation movement in CMH. This made
sense at the time because the disability rights movement was in its infancy and the
ADA, which guaranteed equal access, was still decades away. But now, sole depen-
dence on resources within CMH to facilitate community integration should be
acknowledged as inadequate and sometimes counterproductive. Efforts should be
made to identify and address the exclusionary barriers that prevent and limit access
to mainstream resources by individuals who experience psychiatric disabilities. This
is analogous to the physical disability community’s demand for curb cuts and ramps
and to those in the sensory disability community who fought for modifications such
as braille signs, elevators that announce floors, and crosswalks with beeping signals.

Barriers to Transformation: Acknowledging Conundrums

in Promoting Community Integration
Imagine the following situation about John, our protagonist, who receives supports
in a CMH system that promotes community integration:

John has worked at the restaurant for two years. He now wants to do
something else and work more hours. He has applied for many jobs that
would allow him to pursue a career. Unfortunately, he never even gets an
240 Transformative Communit y Change

interview and fears that his lack of education and not knowing someone in
the business is hurting his chances of ever advancing. He was able to buy
the cassette recorder, but now wants a 50-inch screen television and a cable
connection, but realizes that his entitlements and limited income from the
restaurant will not be enough. And he goes out with Mary the waitress
a few times, but, while pretty, John realizes that she is not his type. John
works out at the local gym three times a week and feels great. He has lost
weight and likes the way he feels, and his doctor says his diabetes is getting
under control. The good news is that he enjoys working out at the local
gym. However, he does miss the relationships he developed with people
in his peer support program. He does talk a little to people at work and the
gym, but still feels somewhat lonely.

Is promoting community integration for John the right thing to do? A “conundrum”
is a difficult problem that has no clear answer or requires the acceptance of imper-
fect solutions that themselves raise additional questions. The promotion of com-
munity integration creates its share of conundrums, and failing to acknowledge
them may lead to drift and reversion to old ways of doing things, thereby abandon-
ing commitment to transformational change. In this section, we review three such
conundrums and encourage maintaining constant open dialogue and debate about
how to handle each.

Conundrum One: Can Mental Health Systems Take Responsibility

for Enhancing Engagement in the Disparate “Personal Communities”
That Characterize Contemporary Life?
For some, the goal of community integration remains focused on shifting people
out of isolated psychiatric hospitals and into local neighborhoods. Certainly, the
central thrust of the deinstitutionalization movement that began in the 1950s was
to dramatically reduce the census in state hospitals and help people return to the
community. However, it did not take long to recognize that a simple focus on a geo-
graphic shift—from hospital to community—failed to prevent continued isolation
and separation from others (Segal & Aviram, 1978).
The evidence from various studies indicates that most people who experience
psychiatric disabilities, although present in the community, do not participate in the
social fabric of their communities (Burchard et al., 1992; Silverman & Segal, 1994).
But the concept of “community” has changed substantially over the last generation.
Although we cling nostalgically to the notion of a neighborhood full of family and
friends, jobs and shops, churches and baseball diamonds, it is now recognized that
most now know few neighbors and have most of their social ties outside of their
local neighborhood (Wellman & Gulia, 1999). Most people now live in one place,
talk by phone to family members elsewhere, face a long commute to work, drive
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 241

across town to attend religious services, join clubs that meet in distant locations, or
establish new contacts on the Internet. One of the most prevalent complaints about
the challenges of “participation” is transportation because very little that most peo-
ple would like to participate in occurs only a few blocks away.
The achievement of community integration means that those who experience
psychiatric disabilities will develop similar personal communities, most likely out-
side their immediate neighborhoods. Mental health systems typically have a lim-
ited set of resources to help people work or pray or pursue romantic relationships
(Baron, 1975) outside of their particular neighborhoods. People with psychiatric
disabilities may also need help in grappling with the realities of their multiple “per-
sonal communities” and making often difficult choices—balancing work and fam-
ily, recreation and civic responsibility—just like everyone else.

Conundrum Two: How Do We Promote Opportunities for People

to “Live in the Community Like Everyone Else” While Honoring
Their Choices to Remain in Segregated Environments?
There is something about promoting community integration that presupposes a
high regard for the community itself—its values, its social organization, and the
way in which most individuals find meaning and satisfaction in their lives. Even in
a highly individualistic and multicultural society such as our own, the pressure to
conform is intense, and there is a strong pull for us to support people in developing
the same range and intensity of “personal communities” as those without psychiat-
ric disabilities.
Is it possible, however, to ask whether we can too far in this direction? Should
there be a counterbalance in our work that offers support in constructing valuable
roles apart from more mainstream patterns and solely in association with other
people with psychiatric disabilities—of “opting out” rather than “living like every-
one else”? To ask this kind of question is not to suggest affection for a return to
the involuntary segregation of those with psychiatric disabilities. Nonetheless, it is
worthwhile to examine the degree to which helping those with psychiatric disabili-
ties to establish lives “like everyone else” is being challenged by those who desire to
retain the option of supports and services with some degree of separateness—an
alternative to fitting in.
Although many consumers report that their primary goals are a decent home, a
good job, and some close relationships, opportunities to fit in may come at a cost to
individuality and feelings of common identity with others who are different. Indeed,
Kenji Yoshino (2006) has written—with regard to those who identify themselves as
members of ethnic or sexual minority groups or as persons with disabilities—that
although our attitudes have somewhat changed, and it is no longer necessary for
people to attempt to “pass” as members of the mainstream, there is still considerable
social and legal pressure to “cover”; that is, to suppress one’s own natural behavior
242 Transformative Communit y Change

to such a degree as to cover over a crucial aspect of one’s self. We’re more tolerant of
those who identify themselves as different, but we still expect them to fit in: you can
be gay or black or mentally ill as long as your actions and behaviors conform to the
predominant social values. Does the facilitation of community integration require
people with psychiatric disabilities to “cover”?
Community mental health systems have a long history of developing separate
housing, work, education, leisure, and social supports, including peer support, and
other life domains outside of the mainstream community. Other groups have done
the same. Veterans gather nightly in Veterans of Foreign Wars (VFW) halls across
the country; college campuses offer segregated dorms for members of ethnic or
sexual and gender minorities; and “deaf culture” has been a rallying cry that rejects
the notion of fitting into the hearing world.
There are several arguments for separate services. First and foremost is the
persistence and impact of prejudice and discrimination:  the attempt to inter-
act in the mainstream often results in either ridicule or exclusion. Corrigan and
Watson (2002) note the ways in which prejudice and discrimination lower both
the self-esteem and life opportunities of devalued groups and force individuals
with a common devalued identity into mutual associations designed to reas-
sert their fundamental worth (e.g., Chamberlin, 1978)  and positive self-image
(Estroff, 1995). If those with mental health diagnoses, for instance, won’t be fairly
treated—by real estate agencies or hiring personnel or local colleges—then we’d
best meet those needs on our own.
A second argument that has been made is that separate services offer a safer
and more supportive environment in which those with psychiatric disabili-
ties can master the repertoire of skills, coping and covering mechanisms, and
social graces they can use later in a more assertive effort to become part of the
broader community. However, the ambivalence of the field toward this approach
should be noted. The emergence of supported housing, employment, and edu-
cation models, for instance, attempts to move individuals far more rapidly into
the mainstream, but these still stop short of the harder task of encouraging the
use of the same sets of mainstream services available to all citizens, such as real-
tors, commercial training programs, or community colleges. There is a pervasive
belief in CMH that it is necessary to prepare those with psychiatric disabilities
for living, working, and learning in the everyday world within separate settings
that we believe are especially sensitive to their uniqueness. This creates a dis-
jointed relationship between our means and our ends, one that highlights our
ambivalence on this issue.
A third reason is the expressed desires of many consumers themselves to
find a safe place where they can truly be themselves, without the pressure of
conforming to external and exhausting demands to “pass” or “cover.” We can
understand this ambiguity more fully by drawing from the sociological litera-
ture on cultural identity and the various strategies minority groups have used
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 243

Table 11.1 Perceived Value of Mainstream Culture and Psychiatric

Disability Subculture

Perceived Value of Psychiatric Perceived Value of Mainstream Culture

Disability Subculture
High Value Low Value
High Value Integration Segregation
Low Value Assimilation Marginalization

to establish a place for themselves. If we define the experience of a psychiatric

disability as its own subculture, then we can ask: (a) how much we value the
standards and mores of the mainstream culture and (b)  how much we value
the standards and mores of the unique subculture of psychiatric disability. The
answers yield Table 11.1.
In what inevitably is an oversimplification of a complex reality, the AIMS chart
in Table 11.1—assimilation, integration, marginalization, segregation (Berry, 1990;
Buell & Minnes, 1994)—suggests that the value one attributes to either the main-
stream or the subculture can help to clarify both system and individual goals. Those
who highly value the mainstream culture but devalue their own subculture’s dif-
ferences seek assimilation into the broader social setting; those who devalue the
mainstream’s ethos but highly value their own subculture tend to move toward
more segregation. The AIMS paradigm suggests that those who value both the main-
stream and are eager to participate in the life around them even while they value
some aspects of their uniqueness and draw strength from their peers, seek a new
identity that they capture as integration. Perhaps this kind of integration is what we
are after, one in which each person identifies when he or she wants (or needs) to
hang onto his or her uniqueness and when he or she wants (or needs) to live like
everyone else. This can be a difficult balancing act, but isn’t this kind of integration
the essential challenge that most people face in adulthood, that of balancing what is
unique about themselves with society’s demands that they conform?

Conundrum Three: Does Community Integration “Promise” a

Reasonably Good Life or Only an Assurance of the “Opportunity”
to Pursue the Good Life, with the Same Chances of Life Satisfaction
and Dissatisfaction as Everyone Else?
The goal of assuring that each person who experiences a psychiatric disability will
have the supports needed to have a reasonably satisfying life places an enormous
demand on local, state, and federal mental health systems, as well as on natural sup-
ports. Offering the opportunity to live in the community “like everyone else” means
244 Transformative Communit y Change

that some community participation and outcomes will be spectacular, some will fail
spectacularly, while most will have to learn to live with modest achievements and
muted satisfactions—just like everyone else.
We can simplify the discussion of this issue by focusing on the three concerns
that consumers tell us they place at the center of their life ambitions: a decent place
to live, a good job, and a few close relationships. These would seem to be relatively
modest desires and ones that the wealthiest nation in the world ought to be able
to ensure, but the reality suggests otherwise. Many of those who rely on the public
mental health system find themselves without these fundamentals, but so, too, do
many of their fellow citizens without impairments.

A Decent Place to Live

Nothing would seem more basic to the rights embodied in the Olmstead decision
than the promise that those still unnecessarily confined to state psychiatric hos-
pitals should not only be discharged, but also be helped to find decent homes in
decent neighborhoods. Nonetheless, our history here is far from exemplary:  the
deinstitutionalization movement led to the distressing realities of shoddy boarding
homes, overwhelmed families, increased homelessness, and the psychiatric ghet-
toes that appeared in most major urban centers (Carling, 1995; Metraux, Caplan,
Klugman, & Hadley, 2007).
However, it is important to acknowledge that the residential circumstances of
those who experience a psychiatric disability may not be all that different from
those without disabilities, who face their own challenges. Almost every disadvan-
taged group—mothers who receive welfare, the working poor, people who experi-
ence other disabilities, ex-offenders, battered spouses, immigrants, and those young
adults “aging out” of foster care settings—face similar challenges, all exacerbated
by the growing number of families left homeless by the housing mortgage crisis.
Indeed, the nation has a low-cost housing crisis of significant and widespread
proportions. A  2001 analysis estimates that even the most basic decent accom-
modations will consume approximately 50% of the monthly financial resources
of low-income workers, which is far more than most can reasonably afford. This
forces many into substandard housing in unpleasant, inconvenient, and sometimes
dangerous neighborhoods (National Low Income Housing Initiative, 2004). How
realistic can it be for us to “promise” a decent home to those who experience a psy-
chiatric disability in such circumstances?

A Good Job
Finding a decent place to live often depends on landing “a good job,” but a good job is
notoriously hard to find and keep for many people, especially those who experience
a psychiatric disability. Despite an expanding emphasis on helping people toward
living, learning, and working goals in CMH systems, unemployment remains the
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 245

normative state for those with psychiatric disabilities. Despite several decades in
which employment programs have grown, employment goals and supports are
rarely mentioned by providers, and a referral to a vocational program is more by
chance than intentional (Baron, 2002). And even the best employment programs
report only modest success, with fewer than 40% ever obtaining jobs, and many of
those jobs are part-time, poorly paid, without benefits, and offer little opportunity
for advancement (Baron & Salzer, 2002).
People with mental illnesses are not alone in their difficulties in finding a good
job. Those with other labor market disadvantages, such as low educational attain-
ment, criminal backgrounds, mothers receiving entitlements, those with HIV/
AIDS diagnoses, and now the growing difficulties of the recession’s long-term
unemployed—face the same set of employment challenges. Indeed, economists
have suggested for some time that the national labor market is now divided: those
with college educations and professional capacities will continue to advance,
while those without will find good jobs—with decent pay, sustaining benefits,
and bearable working conditions—in scarce supply (Rank, 2004). Finally, there
is increasing evidence that the American parable of starting at the bottom and
working your way to the top—or even the middle—may be even less likely than
ever, and those who start out in the low-wage or contingent workforce are likely
to remain there (Isaacs, 2011), with little prospect for the “meaningful work” that
so many people search for. What, then, can we promise to people with psychiatric
disabilities?

A Few Close Relationships

If the economic cards are stacked against most people with regard to residential and
vocational success, surely, we can do better at helping people to establish mean-
ingful personal relationships? People who experience psychiatric disabilities con-
sider close relationships important but find that they are often harder to establish
in community than institutional settings (Davidson, Haglund, Stayner, Rakfeldt,
Chinman, & Tebes, 2001), are frequently restricted to family members or paid sup-
port personnel or volunteers, and result in, at best, social networks that are half
the size of those of people without psychiatric disabilities (Goldberg, Rollins,  &
Lehman, 2003). There is surprisingly little information on the intimate lives of
those with psychiatric disabilities. We don’t know much about romances and flir-
tations, almost nothing about levels of sexual activity, and only the beginnings of
issues about gender identity and same-sex relationships (Perry & Wright, 2006).
Psychosocial programs have always provided social opportunities, and drop-in cen-
ters play a similar role in providing a safe harbor for friendships and romances, but
much of the social engagement of those with psychiatric disabilities is within the
subculture itself, and those programs that seek to improve social skills or provide
supported socialization have yet to report sustained success.
246 Transformative Communit y Change

There is also evidence that many people without psychiatric disabilities

are complaining of a level of disconnection in their own lives. Putnam (2000)
is among the most prominent to chart the decline in community activities.
Participation in civic organizations or political parties, in religious congregations
and book clubs, in hobby groups or bowling leagues has declined steadily since
the end of World War II, and people at every economic level increasingly report a
sense of isolation and a lack of support. The culprits we blame—suburbanization,
mall culture, the lure of the television, and the like—leave all of us with a chal-
lenging task in seeking to be “of and not just in” the community, with the Internet
a poor substitute for “knocking a few beers back” after a night at the bowling alley.
What can we promise people with psychiatric disabilities then, who face the addi-
tional burdens of self-stigma, attenuated family and social ties, and prejudice and
discrimination?

Conclusion
Although John and others who experience psychiatric disabilities will find it dif-
ficult to obtain the decent homes, good jobs, and close friends they long for, a sys-
tem that talks about hope but denies or delays opportunity to try to move forward
(possibly in a misguided attempt to protect them from life’s disappointments) and
that validates only stability, is not a transformed system. Steps toward a transformed
system do not guarantee a glorious future. But transformation does offer the exhila-
rating opportunity for each individual to reach for the future he or she wants for
him- or herself and to see how it goes.
Community mental health is in an exciting era in which there is a great deal
of dissatisfaction with current approaches to enhancing the quality of life and
well-being of individuals with mental illnesses. The concept of recovery has cap-
tured the hearts and minds of many and has led to some significant changes in
CMH. The community integration and other disability concepts that are briefly
described in this chapter, if adopted within the ongoing transformation, will
achieve the type of second-order transformation desired by everyone. We rec-
ognize that some who have written about recovery have incorporated some of
these thoughts in their explication of recovery principles, but we believe that
without the full incorporation of the concepts, frameworks, and principles we
describe the deeper philosophical underpinnings of these concepts are lost, and
it is the change in philosophy that will lead to meaningful and permanent change
of the system. Furthermore, the adoption of these concepts also connects the
psychiatric disability community with the larger disability community—of con-
sumers, providers, policy makers, and researchers—whose separation may have
resulted in a path focused on recovery rather than community integration in the
first place.
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 247

References
Americans with Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (1990).
Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health ser-
vice system in the 1990s. Psychosocial Rehabilitation Journal, 16, 11–23.
Baron, R. C. (1975). Community careers: An assessment of the life adjustment of former mental hospital
patients. Philadelphia, PA: Horizon House Institute.
Baron, R. C. (2002). People at work: The past and future career patterns of people with serious mental
illness. Tinley Park, IL: Recovery Press.
Baron, R. C., & Salzer, M. S. (2002). Accounting for employment among people with mental illness.
Behavioral Sciences & the Law, 20, 585–599.
Bellack, A. S. (2006). Scientific and consumer models of recovery in schizophrenia: Concordance,
contrasts, and implications. Schizophrenia Bulletin, 32(3), 432–442.
Berry, J. (1990). Psychology of acculturation: Understanding individuals moving between cultures. In
R. W. Breslin (Ed), Applied cross-cultural psychology (pp. 232–253). Thousand Oaks, CA: Sage.
Boydell, K. M., Gladstone, B. M., & Crawford, E. S. (2002). The dialectic of friendship for people
with psychiatric disabilities. Psychiatric Rehabilitation Journal, 26, 123–131.
Buell, M. K., & Minnes, P. (1994). An acculturation perspective on deinstitutionalization and ser-
vice delivery. Journal of Developmental Disabilities, 3(2), 21–31.
Burchard, S., Rosen, J., Gordon, L., Hasazi, J., Yoe, T., & Dietzel, L. C. (1992). A comparison of social
support and satisfaction among adults with mental retardation living in three types of commu-
nity residential alternatives. In J. W. Jacobsen, S. N. Burchard, & P. J. Carling (Eds.), Community
living for people with developmental and psychiatric disabilities (pp. 137–154). Baltimore: Johns
Hopkins University Press.
Carling, P. J. (1995). Return to community: Building support systems for people with psychiatric dis-
abilities. New York: Guilford.
Chamberlin, J. (1978). On our own:  Patient-controlled alternatives to the mental health system.
New York: McGraw-Hill.
Corrigan, P.  W.,  & Watson, A.  C. (2002). The paradox of self-stigma and mental illness. Clinical
Psychology: Science and Practice, 9(1), 33–53.
Davidson, L., Haglund, K. E., Stayner, D. A., Rakfeldt, J., Chinman, M. J., & Tebes, J. K. (2001).
I was just realizing . . . that life isn’t one big horror: A qualitative study of supported socializa-
tion. Psychiatric Rehabilitation Journal, 24(3), 275–292.
Davidson, L., O’Connell, M. J, Tondora, J., Lawless, M., & Evans, A. C. (2005). Recovery in serious
mental illness: A new wine or just a new bottle? Professional Psychology: Research and Practice,
36, 480–487.
Estroff, S. E. (1995). Whose story is it anyway? Authorship, voice, and responsibility in narratives
of chronic illness. In S. K. Toombs, D. Barnard & R. A. Carson (Eds.), Chronic illness: From
experience to policy (pp. 77–102). Bloomington: Indiana University Press.
Foucault, M. (1964). Madness and civilization:  A  history of insanity in the age of reason.
New York: Random House.
Goldberg, R. W., Rollins, A. L., & Lehman, A. F. (2003). Social network correlates among people
with disabilities. Psychiatric Rehabilitation Journal, 26(4), 393–402.
Harlan, S. L., & Robert, P. M. (1998). The social construction of disability in organizations: Why
employers resist reasonable accommodation. Work and Occupations, 25, 397–435.
Hopper, K. (2007). Rethinking social recovery in schizophrenia:  What a capabilities approach
might offer. Social Science & Medicine, 65, 868–879.
Isaacs, J. B. (2011). Economic mobility of families across generations. Washington, DC: The Brookings
Institution.
Mankowski, E.  S.,  & Thomas, E. (2000). The relationship between personal and collective iden-
tity: A narrative analysis of a campus ministry community. Journal of Community Psychology, 28,
517–528.
248 Transformative Communit y Change

Marshall, G. (Ed.). (1994). The concise Oxford dictionary of sociology. Oxford, UK: Oxford University
Press.
Metraux, S., Caplan, J. M., Klugman, D., & Hadley, T. R. (2007). Assessing residential segregation
among medicaid recipients with psychiatric disability in Philadelphia. Journal of Community
Psychology, 35, 239–255.
Mitra, S. (2006). The capability approach and disability. Journal of Disability Policy Studies, 16,
236–247.
National Low Income Housing Initiative. (2004). America’s neighbors: The affordable housing crisis
and the people it affects. Washington, DC: National Low Income Housing Coalition.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
Nirje, B. (1980). The normalization principle. In R. J. Flynn & K. E. Nitsch (Eds.), Normalization,
social integration, and community services (pp. 31–50). Baltimore, MD: University Park Press.
Oliver, M. (1996). Understanding disability: From theory to practice. Basingstoke, UK: Palgrave.
Perry, B., & Wright, E. (2006). The sexual partnerships of people with serious mental illness. Journal
of Sex Research, 43(2), 174–181.
Putnam, R. D. (2000). Bowling alone. New York: Simon and Schuster.
Racino, J. A. (1995). Community living for adults with developmental disabilities: A housing and
support approach. Journal of the Association of Persons with Severe Handicaps, 20, 300–310.
Rank, M. R. (2004). One nation underprivileged: Why American poverty affects us all. New York: Oxford
University Press.
Rappaport, J. (2000). Community narratives: Tales of terror and joy. American Journal of Community
Psychology, 28, 1–24.
Salzer, M. S. (1998). Narrative approach to assessing interactions between society, community and
person. Journal of Community Psychology, 26(6), 569–580.
Salzer, M.  S. (2006). Introduction. In M. Salzer (Ed.), Psychiatric rehabilitation skills in prac-
tice:  A  CPRP preparation and skills workbook (pp. 1–5). Columbia, MD:  United States
Psychiatric Rehabilitation Association.
Salzer, M. S. (2010). Certified peer specialists in the United States Behavioral Health System: An
emerging workforce. In L. D. Brown & S. Wituk (Eds.). Mental health self-help: Consumer and
family initiatives (pp. 169–191). New York: Springer.
Salzer, M. S., Katz, J., Kidwell, B., Federici, M., & Ward-Colasante, C. (2009). Pennsylvania Certified
Peer Specialist Initiative: Training, employment, and work satisfaction Outcomes. Psychiatric
Rehabilitation Journal, 32, 293–297.
Segal, S. P., & Aviram, U. (1978). The mentally ill in community-based sheltered care: A study of com-
munity care and social integration. New York: John Wiley and Sons.
Seidman, E., & Rappaport, J. (Eds.). (1986). Redefining social problems. New York: Plenum.
Silverman, C. J., & Segal, S. P. (1994). Who belongs: An analysis of ex-mental patients’ subjective
involvement in the neighborhood. Adult Residential Care Journal, 8(2), 103–113.
Thomas, C. (2004). How is disability understood? An examination of sociological approaches.
Disability and Society, 19, 570–583.
Watzlawick, P., Weakland, J.  H.,  & Fisch, R. (1974). Change:  Principles of problem formation and
problem resolution. Oxford, UK: W. W. Norton.
Wehmeyer, M.  L. (1996). Self-determination as an educational outcome:  Why is it important
to children, youth, and adults with disabilities? In D. J.  Sands  & M. L.  Wehmeyer (Eds.),
Self-determination across the life span:  Independence and choice for people with disabilities (pp.
15–34). Baltimore, MD: Paul H. Brooks.
Wellman, B., & Gulia, M. (1999). The network basis of social support: A network is more than the
sum of its ties. In B. Wellman (Ed.), Networks in the global village: Life in contemporary communi-
ties (pp. 83–118). Boulder, CO: Westview Press.
Whiteneck, G. (2006). Conceptual models of disability: Past, present, and future. Washington, DC: The
National Academies Press.
 Communit y Integ ration a s a Paradig m for Trans for mative Chang e 249

Wolfensberger, W. (1970). The principle of normalization and its implications to psychiatric ser-
vices. American Journal of Psychiatry, 127, 291–297.
Wolfensberger, W. (1972). The principle of normalization in human services. Toronto:  National
Institute on Mental Retardation.
World Health Organization (WHO). (2001). International Classification of Functioning, Disability
and Health. Geneva: Author.
Yoshino, K. (2006). Covering: The hidden assault on our civil rights. New York: Random House.
 PA RT S I X

TRANSFORMATIVE CHANGE
OF SOCIAL CONDITIONS
 12

Transformative Organizational Change

in Community Mental Health
josé ornel as, teresa duarte, and maria fátima jorge-monteiro

The chapter describes the work of a community-based organization inspired by

community psychology principles and values. The organization—Associação para
o Estudo e Integração Psicossocial (AEIPS)—operating since 1987, is a private
nonprofit endeavor, created by users, professionals, and families to challenge the
deinstitutionalization process and to develop community-based supports to facili-
tate community integration. The application of a contextually based, ecological
approach with the mission of recovery has contributed toward the transformation
of the program from a center that provides services into a center that links individu-
als to community resources. In this chapter, we review how a community focus has
led the center to organize resources in terms of housing, education, and employ-
ment, thus facilitating the access of people with mental health problems to natural
community contexts, such as schools and businesses, and to other social resources
available to the general public.
Before we describe how we used community psychology contributions to pro-
mote transformative change in our organization, it is important to briefly introduce
the conceptual frameworks that guide our work: recovery, a contextual-ecological
perspective, empowerment, and a capabilities approach to human development.

Theoretical Frameworks Informing Transformative

Change in Community Mental Health
Recovery
In the past 15 years, recovery has become the expressed focus of many community
mental health (CMH) systems and many critiques of systems. A focus on recovery is

253
254 Transformative Change of Social Conditions

often pursued as a response to the limitations of mental health care that traditionally
focuses on addressing deficits, avoiding the exacerbation of deficits, and maintain-
ing limited functioning. Although recovery has been defined as a highly personal
process (Anthony, 1993), it would be a mistake to view it only as an individual
process (Ornelas, Vargas-Moniz, & Duarte, 2010). Not surprisingly, we choose to
promote a view of recovery situated in community contexts (Ornelas et al., 2010).
Recovery is defined by the people who live it as a process; it is a daily challenge in
the quest to reacquire hope, personal strength, and control over the important deci-
sions of one’s lives; recovery emphasizes community participation through valued
social roles (Chamberlin, 2006; Deegan, 1988; Fisher, 2006; Leete, 1989; Mead &
Copeland, 2000). This process of personal transformation should not be decontex-
tualized from social issues and wider policy considerations that can have their own
impacts on personal functioning. In our view, the recovery concept incorporates the
ecological perspective that individuals and their environments are interconnected,
making a link between the individual and social change. For example, people with
mental health problems probably constitute a social group that has been segregated
from society not only for the longest period of time, but in the most severe forms
due to its inaccessibility to a natural support system and community participa-
tion (Ornelas, 2008). This reality is a consequence of policies of total institutions
(Goffman, 1961), such as psychiatric hospitals, and, more recently, of continuum
of care rehabilitation programs that remain segregated and replicate many of the
characteristics of the institutions that they supposedly replace (Nelson, Lord, &
Ochocka, 2001; Ornelas, 2008; Rappaport, 1981). The challenges of recovery-ori-
ented services involve the removal of social barriers that exclude people with mental
health problems from many rights, opportunities for self-determination and social
participation, and the benefits of full citizenship (Davidson, O’Connell, Tondora,
Staeheli, & Evans, 2005; Jacobson, 2004).

Community Integration
In our approach, recovery relies on environments that provide opportunities and
resources for performing valued social roles and significant activities that connect
people to the community (Davidson, Tondora, O’Connell, Kirk, Rockholz, & Evans,
2007; Onken, Dumont, Ridgway, Dornan, & Ralph, 2002). Several researchers have
developed conceptualizations about community and social integration. Ware and
colleagues (2007; 2008) and Wong and Solomon (2002) define social integration
as a process through which individuals develop and increasingly exercise capacities
for interpersonal connectedness and citizenship by focusing on interactional and
social network components. Nelson and colleagues (2001) argue that community
integration can be measured by concrete indicators, such as employment, housing
stability, and income, or by more subjective indicators, such as meaning or feelings
of personal empowerment. In our research with people with experience of mental
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 255

illness who use AEIPS’s services, participants affirmed that recovery does not occur
naturally, but requires courage and the existence of a supportive context (Duarte &
Ornelas, 2008; Monteiro  & Matias, 2007). Participants also stated that employ-
ment, school activities, and involvement in training activities, advocacy groups, or
other meaningful activities that provide a sense of achievement and contribution to
their community are key levers for recovery processes.

Contextual-Ecological Approach
An organization oriented to recovery and community integration would be
well-served by adopting a contextual and ecological approach (Kelly, 2006; Levine,
Perkins,  & Perkins, 2005). This approach helps to avoid an exclusive focus on
individual adjustment. It provides frameworks for considering how community
resources can be mobilized and used to expand social networks, help to regain val-
ued social roles, and strengthen community participation. Instead of creating alter-
native and segregated settings in which people can live, work, and participate, the
contextualist-ecological approach promotes integration into natural community
contexts. The challenge is to look for resources that facilitate mutual adjustment in
the person and the environment and to change social contexts into permanent and
continuous sources of natural social support.
Within this approach, the relationship between individuals and their environ-
ment is reciprocal: not only does the environment have an impact on individuals,
but individuals themselves also introduce change that has an impact on their envi-
ronments. Research has shown that a strategy of direct contact between people
with and without mental illness has more positive effects in changing attitudes than
do anti-discrimination campaigns (Pettigrew & Tropp, 2000; Watson & Corrigan,
2005). Thus, community support services that provide opportunities for those
direct contacts through the participation of people with experiences of mental illness
in community settings will be more effective in promoting user empowerment and
community change. Therefore, from a contextualist-ecological perspective, recovery
has a social and political dimension that reaches beyond the personal, involving citi-
zenship, advocacy, and building more caring and inclusive communities.

Empowerment
Another major community psychology contribution to our approach to organiza-
tional transformation was the inspiration of empowerment theory. Within commu-
nity psychology, empowerment is defined as the process by which individuals gain
mastery over their lives (Rappaport, 1984; Zimmerman, 2000) and participate in
changing their social and political environments to improve equity and quality of
life (Minkler & Wallerstein, 2005). The use of empowerment theory means that
people have the right to choose where they live, work, study, and socialize, and they
256 Transformative Change of Social Conditions

have the resources that enable them to make those choices. Empowerment means
that service delivery should be directly influenced by those who use the services,
and that active participation may constitute the basis for the improvement of recov-
ery outcomes. At an organizational level, the application of empowerment requires
collaboration between staff and users. Kelly (2003) and Espino and Trickett (2008)
argue that the collaborative relationship must rely on two core values: commitment
and reciprocity. Collaboration based on these values involves mutual goals, parity
among stakeholders, shared resources, shared participation, and accountability to
develop collaborative processes of decision making and to increase mutual learning.
As we discuss later, empowerment and related theories of mutual help have been
crucial for increasing service user influence over organizational policies in terms of
service planning, management, and evaluation, as well as for the development of
peer support initiatives and for the launch of a National Users Network (Ornelas
et al., 2010).

Capabilities Approach
We should note that our transformative organizational approach is very consistent
with the capabilities approach, a theory gaining prominence in community psy-
chology. The capabilities framework has been developed in other fields (Nussbaum,
2000; Sen, 1992) and is beginning to be applied in research and practice in the men-
tal health field (Davidson, Ridgway, Wieland, & O’Connell, 2009; Hopper, 2007;
Ware et al., 2007). Because the framework operates in the relationship between
individuals and contexts, capabilities theory appears to be a challenging conceptu-
alization with which to evaluate users’ citizenship and the mental health community
supports efficacy in promoting social integration (Ornelas, Aguiar, Sacchetto, &
Jorge-Monteiro, 2012; Sacchetto & Vargas-Moniz, 2011). The capabilities approach
is a new conceptual tool to define recovery and the integration orientation of men-
tal health community-based organizations (Newberry & Strong, 2009, Ware et al.,
2007) and to overcome the lack of community participation and social exclusion.
Empowerment, capabilities, contextualist-ecological, and recovery perspectives,
as well as our long-standing interest in community integration, have required the
use of new practices and the development of new abilities by professionals in com-
munity support organizations. For example, as a result of increasing user participa-
tion, there is the need to share power and provide opportunities for participatory
decision making, collaborative research, and evaluation. The implementation of an
ecological approach means expanding the intervention to wider social spheres; this
implies the need to constantly search for coalitions and alliances within the commu-
nity. In this sense, professionals should work with various community stakehold-
ers, landlords, neighbors, entrepreneurs, teachers, and other community services
to enhance opportunities for social inclusion (Kloos, Zimmerman, Scrimenti,  &
Crusto, 2002).
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 257

Organization of the Remainder of the Chapter

All of these theoretical contributions have been crucial to understanding the social
and political potential of community psychology to achieve concrete social change
processes. In the next section of this chapter, we provide a brief narrative of how
the AEIPS organization has contributed to the development of a transformative
CMH paradigm and how it has helped to change social policies in the mental health
field in Portugal. We follow the brief narrative with a section that provides detailed
examples of implementing organizational change. These include efforts to promote
user empowerment and influence, both at the organizational and community levels.
We describe supported housing, employment, and educational programs that are
provided to foster community integration, and we discuss the new roles that profes-
sionals can play to support these processes. We conclude with reflections on our
change efforts and the lessons we have drawn from this work.

From Deinstitutionalization to Closing

Psychiatric Hospitals
A Brief History of AEIPS
During the 1980s, the mental health system in Portugal was still structured around
large-scale psychiatric hospitals, psychiatric wards integrated within general hospi-
tals, and large institutional facilities managed by religious organizations. It was in
this context that AEIPS emerged to create community-based services that fully sup-
ported community inclusion of people with mental illness, offer an alternative para-
digm for mental health care, and transform the mental health system in Portugal.

Founding the First Community Support Services

To accomplish a change of paradigm in addressing mental health challenges, AEIPS
planned to implement an innovative small-scale project (Fairweather & Davidson,
1986) to demonstrate the feasibility and effectiveness of community support ser-
vices that prevent transinstitutionalization and social isolation even when people
live in the community. That is, we wanted to demonstrate that people with men-
tal illness do not need to remain in psychiatric institutions and that if adequate
supports are in place, they can live and participate in the social and economic life
of their communities. Through the dissemination of this project’s results, AEIPS
intended to promote change in the mental health system and the emergence of
new organizations that could expand community-based services statewide, as well
as influence policy makers to create supportive legislation. The partnership estab-
lished between AEIPS and the ISPA-University Institute allows us to link research
and action in AEIPS.
258 Transformative Change of Social Conditions

With a vision of social inclusion, the newly formed organization began to oper-
ate on a daily basis to provide a range of support services for people with mental ill-
ness that were previously unavailable, such as mutual help groups, fitness activities,
vocational training, and family support. The first office was located in a room of the
local government of Olivais, in Lisboa, which facilitated contact and collaboration
with other social support services within the community’s neighborhoods. With
the benefit of hindsight, we see that it is significant that the organization was not
formed in a large institution or a specialized mental health setting, but developed
within a municipal office available to all local citizens. Our working relationships
were primarily based on local neighborhood resources rather than with mental
health hospitals. These early experiences have helped shape our perspectives on the
possibilities and promise of transformative change.

Establishing a Residential Alternative

To push and accelerate the deinstitutionalization process, AEIPS undertook a sec-
ond project after the working office and initial services were established. In 1989,
we created the first group home in Portugal that provided a housing solution for
four long-term institutionalized people. Three men and one woman who could not
be discharged previously due to lack of social supports were moved into housing.
This group came from the Júlio de Matos Hospital, one of the largest psychiatric
institutions in Portugal. We selected a house located in a residential neighborhood,
similar to other local housing and accessible to various community resources. This
was a milestone in terms of mental health policy change in Portugal. It was crucial
to demonstrate that deinstitutionalization could work and that people could return
to their communities. As the first group home in the country, it raised great interest
and attention from policy makers, mental health administrators, and professionals.
Several visits to the unit were organized, and annual evaluation reports were sent to
health and social services authorities.
In the following years, the organization created two new group homes in the city
of Lisboa as housing alternatives for people who lacked family and community sup-
ports. These group homes have no time limits and house a small number of people.
We have sought to involve residents in the operation of the residential unit and in
decision-making processes with staff, as well as promote the use of community
resources for several outside activities that are meaningful to the residents. The rel-
evance of these supports was corroborated by a research study (Oliveira, Duarte, &
Amaro, 2007) in which residents reported high rates of a sense of community and
stated that living in community contexts contributed particularly to their personal
recovery and sense of independence. Residents also emphasized the importance
of peer support; of daily routines with concrete responsibilities; and of opportuni-
ties to use community resources for sports, cultural, and leisure activities and for
the possibility of interacting with other people in the community to establish new
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 259

friendships. As we discuss in more detail later, residents’ input and perspectives have
been important sources of organizational change. More recent research has revealed
that 75% of residents want to live more independently (Candeias & Jorge-Monteiro,
2007) and that they would like to find their own home and maintain a stable hous-
ing situation (Duarte & Ornelas, 2008). Privacy and autonomy were the reasons
cited for this preference. These results were consistent with several others studies
that have concluded that people with experience of mental illness expressed a pref-
erence for independent housing with flexible support (Massey & Wu, 1993) and
that independent living contributes to recovery and well-being (Ridgway, 2001).
Based on this research, AEIPS began to organize a supported housing program in
apartments across Lisboa to facilitate and assist independent living opportunities.
We describe this new program in the final section of this chapter.

Creating a Community Center

Another milestone and the third project in the growth and consolidation of AEIPS
was the creation of a Community Center in the early 1990s. Located in a central and
accessible location in Lisboa, this center has allowed the organization to diversify
and improve the range of services provided. With a vision of social inclusion and
citizenship, the Community Center supports people on a daily basis in their recov-
ery processes and in accomplishing their individual goals (the members call them
projects) in terms of housing, education, vocational training and employment, and
fitness and wellness or in mutual help or advocacy activities. We would like to stress
the importance of this Community Center in the development of a transformative
intervention model that translates the values of community psychology into prac-
tice. Our experience suggests that the model that could be used as a guideline or an
inspiration in other social service planning, to prevent the replication of institution-
alized models in community settings.
Under the protocols established with several universities, the Community Center
has also worked as a training placement for students of psychology, community
development, nursing, social work, and medicine, which has allowed these future
professionals to learn skills associated with recovery and community intervention.
The dissemination of concepts and values and the implementation of community
psychology principles was advanced by the working relationships the Community
Center developed with these students.

Using Organizational Change to Promote Policy Change

Advocacy and policy-level discussions with community stakeholders account for
another major component of AEIPS’s activities. Since 1987, there has been a con-
tinuous negotiation process with government health and social welfare bureaus
to advocate for community services and supportive legislation. For example, sup-
ported employment has become a common supportive service in many health
260 Transformative Change of Social Conditions

systems through sustained advocacy by AEIPS. In 1991, AEIPS leadership con-

vinced the National Institute for Employment and Vocational Training to imple-
ment a supported employment program with AEIPS. Although this Institute had
funded several projects for people with disabilities, this was the first time that its
support was extended to people with mental illness. This experience paved the way
for other projects in the mental health field to apply for funding under the European
Social Fund, which has led to the emergence of several new organizations through-
out the country.
Helping to shape new policy through legislation. AEIPS’s advocacy has posi-
tioned the organization to advise agencies and government ministries during
policy deliberations. Between 1990 and 1992, the Ministry of Health and the
Ministry of Employment and Social Services created a joint commission to plan
the implementation of community services that could provide housing and reha-
bilitation programs. AEIPS was extensively interviewed about its experience in
this field during a set of hearings with this commission. In fact, AEIPS was asked
to give suggestions and recommendations for the new plan. But social change is
not a straightforward process, and the plan did not come to fruition. However,
AEIPS remained in dialogue with these agencies. In 1995, the Ministry of
Employment and Social Services began funding AEIPS’s community services
on a regular basis. Finally, in 1998, the two Ministries recaptured the previous
policy work and adopted a piece of legislation (Despacho Conjunto 407/98)
that set the parameters for funding and for the range and type of facilities that
community-based organizations could implement, although these organizations
retained some flexibility in the services they offered. Around the country, non-
profit organizations in the mental health field started to implement support ser-
vices in the community.
Helping to shape national policy. In 2006, the Portuguese government created
the National Commission for the Reform of the Mental Health Services, similar to
the US New Freedom Commission created in 2003 and the Irish Expert Group on
Mental Health Policy created in 2004. This Commission included delegates from
governmental agencies, mental health institutions, and universities. The first author
of this chapter was invited to be a member of the Commission, in part because of
AEIPS’s past work and advocacy. From the experience of working in community
contexts, it was possible to structure a set of recommendations to support and influ-
ence the National Commission, as a way of helping to change public policies for
mental health ( J. Ornelas, personal communication, December 18, 2006). It was
also possible to recommend and organize, under the Commission’s work, several
public hearings with users, families, and professionals from community-based orga-
nizations in order to gather their input. AEIPS was one of the sites for a hearing,
and, consequently, its members, family members, and workers had the opportu-
nity to present opinions and suggestions to effect change in national policy. The
national network of people with mental illness (see the next section of this chapter)
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 261

presented their document about the Rights and Needs of users, which came to be
fully published in the Final Report of the Commission.
The new National Plan for Mental Health (Coordenação Nacional para a Saúde
Mental, 2008)  incorporates some of our principles of transformative change. It
defines recovery as one of its guiding principles and requires that services must fos-
ter conditions that favor self-determination. Services should also create opportuni-
ties for users’ participation in the planning, development, and evaluation of services
received. This plan also proposed the creation of mechanisms that facilitate access
to employment and independent housing in cooperation with other sectors and
community-based organizations and the articulation of public policies on housing,
employment, and education.
Helping to demonstrate the feasibility of new policy. The new plan includes the
implementation of mental health services in general hospitals as part of a strategy to
progressively reduce the use of psychiatric hospitals around the country. Following
this newly developed plan, the government decided to close Hospital Miguel
Bombarda, the oldest psychiatric hospital in Portugal and one of the oldest in
Europe, where Egas Moniz had used inpatients for his psychosurgery experiments.
Once again, AEIPS recognized an opportunity to help shape mental health pol-
icy by assisting in this new process of deinstitutionalization. In late 2010, AEIPS
accepted the National Coordination for Mental Health plan’s challenge to close
down Hospital Miguel Bombarda. In June 2011, AEIPS opened a new residential
facility in the Restelo neighborhood in Lisboa for the last group of 24 people who
remained in the Hospital. The average age of the 13 men and 11 women is 71 years,
ranging from 57 to 92 years. Members of this group had been continuously hospital-
ized for an average of 42 years, ranging from 29 to 58 years. Hospital staff was skepti-
cal that this group of elders could be moved to another setting, especially one that
was not institutional. This project allowed the closure of this hospital and provided
another opportunity for AEIPS to recapture the basics values of CMH. It intends
to demonstrate that even people coming from long-term hospitalization can live in
and be part of the community. AEIPS leaders and members once again hope that
their efforts may lead to other social change and perhaps influence the closure of
others psychiatric institutions. AEIPS believes that to accomplish deep transfor-
mative changes in terms of community integration and citizenship it is essential to
close all psychiatric hospitals.
In summary, as the AEIPS organization developed, we have become keenly
aware of how organizational change can be linked to social change and individual
change. We understand that transformational change needs to be conceptualized at
multiple levels of analysis with intervention strategies chosen to match these levels
of analysis. AEIPS’s history provides examples of how an organization can become a
mediating structure and a linking agent that promotes transformative change across
levels of analysis (Berger  & Neuhaus, 1977; Kloos et  al., 2012). Organizational
change needs to be deliberately linked to other change efforts, and it must be
262 Transformative Change of Social Conditions

responsive to opportunities in the broader sociopolitical contexts. We now turn to

specific programmatic examples of organizational change that can promote change
across levels of analysis. We describe in more detail how changes in organizational
practices can be used and linked to promote transformative change. We use AEIPS’s
emphasis on empowerment, collaboration, community integration, and recovery to
organize these examples.

Implementation of Transformative Change Strategies

Organizational Change Through User Empowerment
and Collaboration
To be responsible in its advocacy, AEIPS uses community psychology’s emphases
on empowerment and collaboration to organize regular user participation in and
critiques of AEIPS’s work. For example, AEIPS undertook a major restructur-
ing of its service program following a transformational dialogue about the pos-
sibilities and conditions of recovery from mental illness that took place during
2001 (AEIPS, 2001). Both professionals and users considered this mutual col-
laboration desirable due to the benefits that could be achieved in terms of sup-
port, resources, and empowerment. As advocated by others, AEIPS has tried to
create opportunities for people who are disadvantaged to drive the organizational
change process.
Research about user and professional collaboration (Constantino  & Nelson,
1995; Lotery & Jacobs, 1994; Stewart, Banks, Crossman, & Poel, 1994) has indi-
cated that a positive collaboration between professionals and users is mainly based
on (a) building trust relationships through regular and longitudinal collaborative
practices, (b) the identification of common goals to achieve, (c) flexibility of atti-
tudes in the face of different values and approaches, (d) combined and continued
reflection, and (e)  sharing of responsibilities ( Jorge-Monteiro, 2000; Lotery  &
Jacobs, 1994; Meissen, Gleason, & Embree, 1991; Stewart et al., 1994). Based on
this knowledge, this transformative organizational effort was intended to give peo-
ple with experience of mental illness the opportunity to become active agents in the
development and implementation of advocacy programs and mutual help. There is
a growing recognition of the capacity of people with experience of mental illness
to take action in many different forms of peer support (Brown, Shepherd, Merkle,
Wituk, & Meissen, 2008; Nelson, Ochocka, Janzen, & Trainor, 2006; Prilleltensky &
Nelson, 2002). This collaborative strategy was validated in our organization by an
Empowerment Study (Ornelas, Vargas-Moniz, & Albuquerque, 2003) that was led
by a committee composed of professionals and users who carried out the transla-
tion and adaptation of questionnaires from Rogers, Chamberlin, Ellison, and Crean
(1997). Research results identified significant empowerment processes for people
with experience of mental illness and raised implications for rehabilitation programs
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 263

and mental health. Essential factors for empowerment included (a) access to infor-
mation, (b) opportunities to make choices and decisions, (c) unlimited opportu-
nities for learning, and (d) increased participation within the organization and in
community life. Involvement and active participation in community contexts was
associated with a strong determination to participate in the group and in the com-
munity and with increased critical awareness about processes of transformative
organizational change (Ornelas et al., 2003).
This empowerment partnership was rendered concrete by the involvement of
users in all decision-making and service delivery areas through the creation of a
pilot program controlled by users. The main mission of this group was to put into
practice collective action, critical awareness, and resource mobilization accord-
ing to the conceptual definitions of organizational empowerment (Maton, 2008;
Zimmerman, 2000).

Establishing a Mutual Help Center

In 2004, the Centro de Empowerment e Ajuda Mútua/Empowerment and Mutual
Help Centre (CEAM) program was created. Throughout 2005, benefits from the
implementation of a collaborative process of assessment throughout the entire
organization were documented with the development of logic models for each pro-
gram (Ornelas et al., 2010). The transformative goals were (a) to increase the par-
ticipation and influence of users with mental illness in the organization and (b) to
obtain greater visibility and participation at the community level. Regarding the
first goal, there was a major debate about the domains in which user participation
and involvement already had very good expression and about those areas where it
was necessary to innovate by introducing the vision of people with mental illness
into programs and practices. Hence, specific goals were set: (a) to increase users’
participation in decision-making processes; (b) to maintain and improve mutual
help actions; (c) to broaden knowledge about recovery, protection of fundamental
rights, individual participation, and conflict resolution; and (d) to support personal
recovery opportunities and participation in the community.
As part of the transformative process, it was considered necessary to implement
all forms of peer support (Davidson, Chinman, Sells, & Rowe, 2006; Solomon,
2004) across all levels of the organization. Users were involved in outreach activi-
ties, staff and student training, and, more recently, as paid staff members in the new-
est organizational projects, as well as in the mutual help weekly meetings already
taking place since the early ‘90s. This change increased the quality of support due to
more collective and individual opportunities and shared experiences. In Breda and
Ornelas’s (2006) study of peer support with 55 AEIPS users (16 women and 39
men from a total of 95 users at that time), 27.8% reported to have achieved better
emotional support and emotional relations, 20.0% improved information sharing,
and 15.7% developed more leisure activities with their peers.
264 Transformative Change of Social Conditions

Community empowerment was also considered in the development of the user

empowerment program because it brings us to the social-political dimension that
relates to the capacity of a community to respond to collective problems (Rich,
Edelstein, Hallman, & Wandersman, 1995; Zimmerman, 1995; 2000). This process
also identified some specific goals for the organization: (a) to increase community
connections, (b) to provide information and training about the possibility of recov-
ery from mental illness to the general population and thus reduce the social stigma
of mental illness, and (c) to organize the representation of interests and priorities
of people with mental illness locally and nationally. AEIPS provided technical assis-
tance (e.g., consulting with application and fund-raising) to user-led initiatives,
such as community education (primarily in postsecondary schools and universi-
ties), raising and allocating resources to edit and print a newspaper named Peer
Support, and translating into Portuguese and editing relevant knowledge about con-
sumer issues and mental health policies in order to disseminate these ideas among
Portuguese users, as well as to foster a sense of community.

Extending Mutual Help Perspectives

A National Network of People with Mental Illness was created as a result of this
user empowerment program with a focus on preventing discrimination and stigma,
developing peer support, and educating the community on recovery and citizen-
ship. By doing this, the Network was able to actively participate in a public hearing
to discuss the new mental health plan and to create a document stating a list of
“Rights and Needs” (PNSM, 2007–2016). These included inclusion in community
life; equal rights and opportunities; access to employment; access to housing; par-
ticipation in professional training; access to schools; respect for spirituality, recov-
ery, and diversity; full citizenship for all; adoption of a positive vision about life;
healthy activities and communing with nature; more independence and autonomy
from families and professionals; peer and mutual support; and more balanced rela-
tions between users and families. This list was successfully included in the final
report of the mental health plan.
In the past two years, AEIPS expanded the consumer–professional partner-
ship by implementing a participatory study about organizational efficacy in fos-
tering capabilities and recovery (Ornelas et  al., 2012). The purpose of the study
is to collectively identify capability gains derived from the organization and to
create a capabilities gains questionnaire through a collaborative process (Miller &
Shinn, 2005; Ornelas et al., 2012) that supports the idea that “the major thrust of a
capabilities-oriented system of care will be to increase the access of users to oppor-
tunities and supports that will enable them to have a decent and self-determined
quality life” (Davidson et  al., 2009, p.  43). The process of user involvement and
effective participation at different levels of organizational and community contexts
is assumed to be a major contributor to a transformative vision of CMH.
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 265

Organizational Change Through Recovery

and Community Integration
As the core components of the AEIPS’s mission from the beginning, recovery and
community integration have been guiding principles. When combined with the
community psychology framework presented earlier, AEIPS has been able to cre-
ate practices and services that contribute to transformative change across levels of
analysis. Access to community resources, such as housing, employment, and educa-
tion, is vital to improve the life conditions of people with mental health problems
and their social participation in community life. Based on this premise, AEIPS orga-
nized a support system to facilitate access to independent housing, participation in
regular schools and universities, and opportunities for mainstream employment in
the community.

Supported Housing Services

Supported housing (Carling, 1995; Ridgway & Zipple, 1990) provides individual-
ized and flexible support to assist people with mental illness to live in their own
houses. Participants could choose where they wanted to live and with whom they
would live. Independent living, and choice and control over housing and the ser-
vices received, are related to housing stability, satisfaction, wellness, and qual-
ity of life (Greenwood, Schaefer-McDaniel, Winkel,  & Tsemberis, 2005; Nelson,
Sylvestre, Aubry, George,  & Trainor, 2007; Tsemberis, Gulcur,  & Nakae, 2004).
Research has also revealed that individualized housing solutions tend to increase
participants’ levels of social interaction in the neighborhood and their sense of com-
munity (Yanos, Felton, Tsemberis, & Frye, 2007) and that the quality of one’s living
environment is related to mental health, social functioning, and community partici-
pation outcomes (Kloos & Shah, 2009).
Establishing supported housing in Lisboa. Since 2009, AEIPS has implemented
a supported housing program, Casas Primeiro, with the support of the National
Institute for Social Security. In two years, this program has housed 65 people with
mental illness who had been homeless for more than six years on average. Using a
Housing First approach (Tsemberis et al., 2004), the program provides immediate
access to permanent and independent housing rented from several landlords and
located in mainstream neighborhoods in Lisboa. Houses are scattered so that sev-
eral program participants do not live in the same building or street. The apartments
are individualized (studio or one room) with rents between 300–350 euros per
month. Users can share their house with another person from their social network
or family if they wish. The program pays the rent and household expenses, such as
water and electricity, and users contribute 30% of their monthly income.
With the collaboration of outreach teams from other organizations, it was pos-
sible to meet and establish contacts with potential program users. The project gave
priority to those people living on the street for the longest periods. Participants
266 Transformative Change of Social Conditions

stated that gaining a place to live was the main reason for joining the program.
Compared with other social responses, the participants felt that this program’s best
feature was access to a home that they did not have to share with anyone else unless
they so desired (Ornelas, Duarte, Almas, & Madeira, 2011).
The Casas Primeiro’s team supports participants in the process of establishing
a home and house management issues, settling documentation, accessing care and
health services, and using community resources. Support services have been pro-
vided in the residential context (e.g., average of six home visits per month) and in
community settings, thus ensuring continued and long-term support. Moreover,
the housing program has been combined with AEIPS resources to meet other indi-
vidual goals and needs and prevent isolation in the community (e.g., social par-
ticipation and leisure activities; Ornelas, 2008). Fostering relationships and social
networks in the neighborhood are central to the effort of maximizing a sense of
belonging and community participation. Participants can also have access to the
AEIPS Community Center, particularly in terms of supported employment pro-
grams, supported education, or wellness activities. Monthly group meetings are
held with all participants and all team members for program review and evaluation.
Discussions address members’ needs for support and suggestions for the future.
These structured meetings have also created moments of camaraderie and shar-
ing. Landlords have been very receptive to the Casas Primeiro program and have
expressed their appreciation for participating in the implementation of this proj-
ect. They have proved to be collaborative partners in addressing specific problems
related to housing and facilitating relationships between participants and neighbors
(Ornelas et al., 2011).
Outcomes for Casas Primeiro. Evaluation results confirm the effectiveness of this
model for reducing homelessness (Ornelas et al., 2011), showing that, with indi-
vidualized support adjusted to specific needs, 87.5% of participants maintain a
stable housing situation. This figure is consistent with international Housing First
evidence indicating that, through this intervention model, 85–90% of people main-
tain a stable housing situation (Tsemberis et al., 2004).
Participants reported being very satisfied with their housing situation and with
the support received from the program. They also reported significant improve-
ments in their personal safety, diet, sleeping patterns, and mental and physical
health, and a more positive outlook for their future. Even those who do not take any
type of medication reported that their mental health improved because they have a
home where they can relax and feel safe. The evaluation data also indicate a decrease
in alcohol and drug use and a drastic reduction in the use of emergency rooms and
hospital admissions.
The two-year results of the Casas Primeiro program document the effectiveness
of this innovative approach in addressing situations of homelessness. Furthermore,
the program’s efficiency is good in terms of cost–benefits when compared with other
social responses, temporary or partial, that exist in this area or with accommodation
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 267

in hostels. As an innovative approach in Portugal, these positive results validate the

applicability and potential for generalization of the Housing First model and have
obtained recognition from political authorities. AEIPS was honored with the 2011
Gulbenkian Prize, a major national award for social innovation, in recognition of
the work done to introduce, implement, and sustain the Casas Primeiro program in
Portugal. It is hoped that this approach could emerge not only as a favored policy
response to homelessness in the national context, but also in housing supports in
the mental health field.

Employment and Education

Employment and education are key dimensions in the processes of inclusion
and recovery for people with experience of mental illness (Duarte  & Ornelas,
2008; Dunn, Wewiorski,  & Rogers, 2008), and they are important services pro-
vided within the organization. The type of employment, working conditions, and
opportunities for career development to which people have access affect multiple
dimensions of functioning and well-being: their achievement and personal empow-
erment, their social and financial freedom, and their role in society (Bond et al.,
2001; Provencher, Gregg, Mead, & Mueser, 2002). People who experience mental
illness often have unfinished degrees, so that the opportunity to return to school can
increase employment opportunities and increase compatibility between personal
interests and career (Burke-Miller et al., 2006; Gao, Gill, Schmidt, & Pratt, 2010;
Murphy, Mullen, & Spagnolo, 2005). Supported education programs may be partic-
ularly relevant for younger people to prevent college dropout and separation from
their groups of colleagues and friends (Gao et al., 2010). Employment and educa-
tion can also contribute to increased social support networks and participation in
other community activities (Revell, Kregel, Wehman, & Bond, 2000; Rollins, Bond,
Jones, Kukla, & Collins, 2011).
Limitations of prevailing approaches to supporting employment and education.
Although CMH services have been created to facilitate the integration of people in
the community, over time, they have lost their original purpose. More emphasis has
been placed on the development of separate programs, such as special classes, shel-
tered workshops, enclaves, and, more recently, social firms. Ironically, these pro-
grams, developed to promote integration, have too often segregated persons with
mental health experience further, following a path similar to what happened with
the physically and mentally disabled (Ornelas, 2008). Underlying this approach
seems to be the assumption that some people will never be able to work in the open
market or study in regular schools (Repper & Perkins, 2003). However, research
has shown that people can successfully return to school or employment, to the
extent that academic and work success is not influenced by psychiatric diagnosis
and symptoms or number of hospitalizations, but by the social and educational sup-
ports that are available (Anthony & Jansen, 1984; Becker & Drake, 1993; Unger,
268 Transformative Change of Social Conditions

Pardee, & Shafer, 2000). What has been considered as poor functioning is actually a
result of a lack of opportunities and resources, which makes it impossible for exist-
ing talents and competencies to flourish and operate.
Historically, another argument to advocate for separate, sheltered environments
was the idea of readiness. For many years, it was believed that people needed to be
trained in a sheltered workshop setting or in some other segregated settings in order
to be ready to work in the community. However, the many years that programs spent
trying to get people ready were not productive years—research has revealed low
levels of success in the transitional process from readiness to competitive employ-
ment. These programs were not effective in getting people ready to work; instead,
they hindered people from obtaining real jobs (Bond, Dietzen, McGrew, & Miller,
1995). Several studies indicate that the skills learned in prevocational programs are
not useful in the business environment and rarely lead to successful employment
outside of the protected setting. When new competencies need to be learned, they
are best learned in a real work context (Anthony & Jansen, 1984; Bond et al., 1995).
Programs that promote rapid access to employment get better results in terms of
number of jobs and wages (Bond et al., 1995). Moreover, employability is not only
a matter of skills training. Most people with experience of mental illness have no
access to employment because they lack opportunities in broader social systems,
lack support, or are targets of discrimination. Interventions that focus only on build-
ing skills will be limited in their effectiveness if they do not address opportunities
for employment. Thus, we argue that CMH interventions should focus on changing
those systems that hindered inclusion and on building a community in workplaces
and schools that includes people with mental illness.
Establishing the employment and education program. Based on supported employ-
ment and education principles, AEIPS’s program has been offering individual-
ized support to people who want to go back to school, at any level of education,
or achieve employment in mainstream businesses in the community. Participants
fully participate in the design, implementation, and evaluation of their own work
projects. And that includes making decisions about work, vocational or educational
alternatives, disclosure of their mental illness, and services and supports they need
and who will provide them. Choice is crucial to professional success. People tend
to have higher overall job adjustment when their strengths, preferences, and aspi-
rations are matched to the workplace environment (Becker, Drake, Farabaugh, &
Bond, 1996; Mank, 2000; Mueser, Becker,  & Wolfe, 2001). AEIPS’s supported
employment and education program gives participants the opportunity to choose
from the same wide variety of goals and options most people enjoy. The program
provides information about different job and educational options, and work and
school requirements, thus allowing participants to compare and evaluate alterna-
tives. The professional’s role is to help people in decision making and to support
their choices. The task is to focus on people’s talents, strengths, and interests and
find a way for people to be successful in workplaces and schools.
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 269

Education initiatives. Support must be adjusted to fit the goals and needs of each
person. At the educational level, this program provides various supports according
to the participant’s needs and interest. For example, the support might be assistance
in filling out forms for application/registration, getting information about financial
aid, accessing scholarships and other resources, or discovering and using school
resources (library, cafeteria). Such support may also include working with schools
and teachers to negotiate reasonable accommodations that facilitate academic suc-
cess, such as mentoring meetings with teachers or change the timing of exams.
Outside of the school setting, the program assists students in organizing time and
study methods, provides resources (study rooms, Internet, and computers), gives
information about community resources (libraries, conferences), and organizes a
student support group to promote mutual help in homework and test preparation.
Employment initiatives. In the supported employment program, people get sup-
port in job seeking, preparing for an interview and in negotiating job terms with
employers. From our years of experience with supported employment, we view the
following activities as being crucial for the success of supported employment pro-
grams: (a) gather updated information about local job opportunities, (b) target the
types of businesses to contact, and (c) market and establish continuous partner-
ships within the business community. In these negotiations, AEIPS professionals
can have an impact on businesses by using empowerment language, focusing on
candidate potential, and maintaining confidentiality concerning the individual’s
personal life experiences unrelated to his or her educational or professional back-
ground. This provides businesses with an idea of how they can support persons
with mental health issues. It is very important to ensure that the employer is made
aware of how the candidate can contribute to the company’s purpose. It is also very
important to communicate that whatever support is needed and required will be
provided.
In many supported employment programs around the world, professionals play
the role of job coaches, providing job site training. In the AEIPS program, how-
ever, job site training is provided by the natural resources available in the work-
place:  employers, supervisors, and co-workers. This decision reflects the priority
AEIPS places on integration in naturally occurring settings and pragmatism for
promoting success in the workplace. Candidate interests and qualifications cover
a wide range of occupations, from entry-level jobs to very specialized and skilled
labor (Ornelas et al., 2010). This diversity and complexity of career choices defi-
nitely makes indispensable the direct involvement of the hiring business’s human
resources department in job site training:  a single job coach from the organiza-
tion will not have expertise in all of the areas needed where members are working.
Moreover, the support given by co-workers facilitates and strengthens integration
into work routines, familiarization with a company’s culture, and creation of inter-
personal relationships. Supported employment research has revealed that social
support and mentoring provided by companies’ natural supports are important to
270 Transformative Change of Social Conditions

job satisfaction, job performance, and overall job adjustment (Mank, 2000; Revell,
Inge, Mank, & Wehman, 1999; Rollins et al., 2011). Professionals work as employ-
ers’ collaborative consultants and as participants’ advocates to facilitate the integra-
tion process. Positive relationships with employers depend on how responsive and
timely professionals are in addressing issues or concerns that employers raise.
Follow-along supports and advocacy can continue for a time that fit the individ-
ual needs of the job candidate. Co-worker relationships, changes in work routines
and tasks, and career development are important issues that must be addressed over
the course of employment. Support services have included regular contacts at the
job site, individualized meetings outside of the work schedule (lunch hour, end
of the day), and weekly group support meetings with other workers in supported
employment. This program also provides opportunities for life-long learning and
job advancement for those who seek new jobs that may provide greater responsibili-
ties, income, or challenges.
The AEIPS supported employment model has been a success with employees
and employers. Employers have reported satisfaction with supported employees
due to their productivity, reliability, flexibility, and team work. Employers have
demonstrated a willingness and capacity to provide initial job site training, work-
place supports, and job accommodations, and they assist employees in pursuing
career advancement opportunities (APEA, 2008; Graffam, Smith, Shinkfield,  &
Polzin, 2002). Employers also report the importance of consultation and assistance
from supported employment services. On the other hand, employers realize that
the support roles played by co-workers and supervisors benefit the company in
terms of work organization and interpersonal relationships.
As with other aspects of AEIPS, the supported employment program has com-
ponents that address transformative change across levels of analysis. The practices
described here promote change and individual and organizational levels of anal-
ysis. More recently, AEIPS acted as co-founder of the National Corporate Social
Responsibility project that brings together more than 100 institutions from busi-
ness and civil society. We will use our experience and perspective to promote social
change at this societal level.

Wellness and Recovery

Issues related to physical health and wellness have always been a concern and a
goal in AEIPS since its beginning in 1987. Early on, weekly fitness activities were
included in the program, always taking into account the principles of capability
and integration and using community resources like swimming pools, gymnasi-
ums, and jogging tracks, as well providing frequent tobacco education sessions.
Smoking was always restricted to open air spaces for everyone in the organization
(AEIPS, 1987).
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 271

However, only in recent years has AEIPS’s wellness program Mais Saúde (More
Health) been strongly expanded. This expansion was undertaken in response to
research that demonstrated the health disadvantages that people with experience
of mental illness endure and that result in the loss of 25 years of life compared with
the general population (Parks, Svendsen, Singer,  & Foti, 2006). Mais Saúde was
extensively reviewed and discussed in the organization among staff, consumers, and
family members. It was created using a logic model with a vision and mission of pro-
moting physical health toward recovery and community integration. To launch this
program, several hiking initiatives were organized with all stakeholders to promote
contact with the renewed walking and biking tracks in the city.
Establishing a wellness program. The Mais Saúde wellness program (AEIPS,
2010) was designed to address the different dimensions of the problem (Parks
et  al., 2006); namely, affordable food and nutrition, exercise, and alcohol and
tobacco use prevention. The introduction of any of these issues required organi-
zational changes that included additional tasks for professionals and consumers;
a greater variety of activities offered; and more action taken in linking, access-
ing, and opening community resources to people with mental health problems.
The food and health domain of the program’s curriculum was settled through
a review of edited materials (Books, 2009; Ridgway, McDiarmid, Davidson,
Bayes, & Ratzlaff, 2002) and online information. Furthermore, consumers in the
organization volunteered to attend educational sessions with invited specialists to
gather information about food properties, and healthier eating options to reduce
or prevent diabetes, obesity, and hypertension, among other diseases. Through
individual support and several workshops, changes were made in food prepara-
tion and diets, and new items were added to users’ shopping lists (e.g., includ-
ing more soups, salads, and fruit) through AEIPS initiatives. Staff and consumers
also worked together in developing antismoking campaigns, and consensus was
achieved to create smoke-free settings and more restrictive rules about smoking
in all AEIPS organizational contexts.
Responding also to an organizational evaluation issue from consumers (AEIPS,
2005), the exercise and physical health domain was profoundly transformed with
the expansion in the number and diversity of physical activities during the week.
Presently, Mais Saúde intends to change lifestyles and improve the general physi-
cal condition of consumers and their levels of physical activity through walking in
parks and jogging tracks in groups, pairs, or alone, or through gym classes in com-
munity facilities.
However, some dimensions of poor health found in the general population
with mental illness will require more and additional advocacy efforts to design and
implement systems change. People with mental illness often experience differential
access to health care services and emergency room treatment, are sometimes not
assigned specific health conditions treatments (Parks et al., 2006), and often must
272 Transformative Change of Social Conditions

deal with the impact of medication. Thus, transformative action must occur on the
individual level (including supporting people in getting regular health examina-
tions) through supporting personal choices and decision making, and, simultane-
ously, also in the community context, by linking and connecting consumers with
available resources or negotiating to change them.

Conclusion
Over the past 25 years, we have used community psychology principles to help us
reach our mission of promoting community integration and recovery. Throughout
our journey, these principles have allowed us to engage in the transformative change
of our organization, but have also contributed to broader social change in how men-
tal health issues are addressed in Portugal. Our experience leads us to four conclu-
sions that guide our future work.
First, transformative CMH should recapture the idea that all people diag-
nosed with mental illness ought to live in the community. We have knowledge and
experience in developing and operating community-based services that promote
individuals’ full citizenship. From our perspective, we now have the capacity and
competence to accomplish the purpose of deinstitutionalization by closing all psy-
chiatric hospitals.
Second, a high level of user participation is essential for transformative organiza-
tional change. Users should be part of committee boards, provide peer support, do
service evaluations, and participate in research as equal collaborators. This dimen-
sion is crucial for the improvement of community-based services and supports and
the promotion of transformative change across all levels of analysis.
Third, CMH programs should also be community oriented. It is not enough to
focus on promoting individual skills or respond to individual problems. Community
psychology principles of contextual-ecological models of recovery and commu-
nity integration can guide these efforts. Community integration can be facilitated
through independent housing, supported education and employment, and other
community-integrated activities that foster recovery, empowerment, and well-being.
Finally, professionals should be advocates for integration, bridging and
strengthening users’ natural support networks, such as friends, family, neighbors,
co-workers, and other community members. As social change agents, professionals
have the responsibility to work in natural community settings in collaboration with
community stakeholders to promote inclusive environments that respect and value
diversity. Where possible, we need to collaborate with user initiatives and family
groups to promote integration, recovery, and empowerment. Transformational
change is possible; we need to work together to achieve it.
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 273

References
AEIPS. (1987). Relatório de actividades 1987. Lisboa, PT: AEIPS.
AEIPS. (2001). Relatório de actividades 2001. Lisboa, PT: AEIPS.
AEIPS. (2005). Relatório de actividades 2005. Lisboa, PT: AEIPS.
AEIPS. (2010). Relatório de actividades 2010. Lisboa, PT: AEIPS.
APEA. (2008). Estudo custo-benefício do emprego apoiado para as empresas. Lisboa, PT: APEA.
Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health ser-
vice system in the 1990’s. Psychosocial Rehabilitation Journal, 16(4), 11–23.
Anthony, W., & Jansen, M. (1984). Predicting the vocational capacity of the chronically mentally ill.
American Psychologist, 39(5), 537–543.
Becker, D.,  & Drake, R (1993). A working life:  The individual placement and supported program.
Concord, NH: New Hampshire-Dartmouth Psychiatric Research Center.
Becker, D., Drake, R., Farabaugh, A.,  & Bond, G. (1996). Job preferences of clients with severe
psychiatric disorders participating in supported employment programs. Psychiatric Services,
47(11), 1223–1226.
Berger, P.,  & Neuhaus, R. (1977). To empower people. Washington, DC:  American Enterprise
Institute.
Bond, G., Dietzen, L., McGrew, J., & Miller, L. (1995). Accelerating entry into supported employ-
ment for persons with severe psychiatric disabilities. Rehabilitation Psychology, 40(2), 75–94.
Bond, G. R., Resnick, S. G., Drake, R. E., Xie, H., McHugo, G. J., & Bebout, R. R. (2001). Does com-
petitive employment improve nonvocational outcomes for people with severe mental illness?
Journal of Consulting and Clinical Psychology, 69, 489–501.
Books, A. (2009). Food education for people with serious psychiatric disabilities:  An evidence-based
recovery curriculum. Boston: Center for Psychiatric Rehabilitation.
Breda, M., & Ornelas, J. (2006). Suporte entre pares em pessoas com doença mental: Satisfação,
reciprocidade e liderança. Relatório de Investigação. Lisboa, PT: ISPA-IU.
Brown, L. D., Shepherd, M. D., Merkle, E. C., Wituk, S. A., & Meissen, G. (2008). Understanding
how participation in a consumer-run organization relates to recovery. American Journal of
Community Psychology, 42, 167–178.
Burke-Miller, J. K., Cook, J. A., Grey, D. G., Razzano, L. A., Blyler, C. R., Leff, H. S., Gold, P. B.,
Goldeberg, R. W., Mueser, K. T., Cook, W. L., et al. (2006). Demographic characteristics and
employment among people with severe mental illness. Community Mental Health Journal,
42(2), 143–159.
Candeias, C., & Jorge-Monteiro, M. F. (2007). Estudo sobre as necessidades habitacionais das pessoas
com doença mental que vivem em residências comunitárias. Dissertação monográfica de licen-
ciatura em Desenvolvimento Comunitário e Saúde Mental. Lisboa, PT: Instituto Superior de
Psicologia Comunitária.
Carling, P. (1995). Return to community: Building support systems for people with psychiatric disabili-
ties. New York: The Guilford Press.
Chamberlin, J. (2006). Confessions of a non-compliant patient. Retrieved January 2, 2006, from www.
power2u.org
Coordenação Nacional para a Saúde Mental. (2008). Plano Nacional de Saúde Mental 2007-2016.
Resumo Executivo. Lisboa, PT: Coordenação Nacional para a Saúde Mental.
Constantino, V., & Nelson, G. (1995). Changing relationships between self-help groups and men-
tal health professionals: Shifting ideology and power. Canadian Journal of Community Mental
Health, 14(2), 55–70.
Davidson, L., Chinman, M., Sells, D., & Rowe, M. (2006). Peer support among adults with serious
mental illness: A report from the field. Schizophrenia Bulletin, 32(3), 443–450.
Davidson, L., O’Connell, M, Tondora, J., Staeheli, M.,  & Evans, A. (2005). Recovery in serious
mental illness: Paradigm shift or shibboleth. In L. Davidson, C. Harding & L. Spaniol (Eds.),
274 Transformative Change of Social Conditions

Recovery from severe mental illness: Research evidence and implications for practice (pp. 5–26).
Boston, MA: Center for Psychiatric Rehabilitation/Boston University.
Davidson, L., Ridgway, P., Wieland, M., & O’Connell M. (2009). A capabilities approach to men-
tal health transformation: A conceptual framework for the recovery era. Canadian Journal of
Community Mental Health, 28(2), 35–46.
Davidson, L., Tondora, J., O’Connell, M, Kirk, T., Rockholz, P.,  & Evans, A. (2007). Creating a
recovery-oriented system of behavioural health care: Moving from concept to reality. Psychiatric
Rehabilitation Journal, 31(1), 23–32.
Deegan, P. (1988). Recovery:  The lived experience of rehabilitation. Psychosocial Rehabilitation
Journal, 11(4), 11–19.
Duarte, T., & Ornelas, J. (2008). Serviços de suporte comunitários orientados para o recovery das
pessoas com experiência de doença mental. Relatório de Investigação. Lisboa, PT: ISPA-IU.
Dunn, E., Wewiorski, N.,  & Rogers, S. (2008). The meaning and importance of employment to
people in recovery from serious mental illness:  Results of a qualitative study. Psychiatric
Rehabilitation Journal, 32(1), 59–62.
Espino S.  L.,  & Trickett, E. (2008). The spirit of ecological inquiry and intervention research
reports:  A  heuristic elaboration. American Journal of Community Psychology, 42, 60–78.
doi:10.1007/s10464-008-9179-7
Fairweather, G.,  & Davidson, W. (1986). An introduction to community experimentation:  Theory,
methods, and practice. New York: McGraw-Hill.
Fisher, D. (2006). A new vision of recovery:  People can fully recover from mental illness. Retrieved
October 1, 2006, from www.power2u.org
Gao, N, Gill, K. J., Schmidt, L. T., & Pratt, C. W. (2010). The application of human capital theory in
vocational rehabilitation for individuals with mental illness. Journal of Vocational Rehabilitation,
32(1), 25–33.
Goffman, E. (1961). Asylums. Garden City, NY: Doubleday Anchor.
Graffam, J., Smith, K., Shinkfield, A., & Polzin, U. (2002). Factors that influence employer decisions
in hiring and retaining an employee with a disability. Journal of Vocational Rehabilitation, 17(3),
175–181.
Greenwood, R., Schaefer-McDaniel, N., Winkel, G., & Tsemberis, S. (2005). Decreasing psychiatric
symptoms by increasing choice in services for adults with histories of homelessness. American
Journal of Community Psychology, 36(3–4), 223–238.
Hopper, K. (2007). Rethinking social recovery in schizophrenia:  What a capabilities approach
might offer. Social Science & Medicine, 65, 868–879.
Jacobson, N. (2004). In recovery:  The making of mental health policy. Nashville, TN:  Vanderbilt
University Press.
Jorge-Monteiro, M. F. (2000). Colaboração entre Profissionais e Grupos de Ajuda Mútua. Actas do
II Congresso Europeu de Psicologia Comunitária (pp. 177–180). Lisboa, PT: SPPC.
Kelly, J. G. (2003). Science and community psychology: Social norms for pluralistic inquiry. American
Journal of Community Psychology, 31(3–4), 213–217. doi:10.1023/A:1023998318268
Kelly, J. (2006). Becoming ecological: An expedition into community psychology. New York: Oxford
University Press.
Kloos, B., Hill, J., Thomas, E., Wandersman, A., Elias, M.  J.,  & Dalton, J.  H. (2012). Community
psychology: Linking individuals and communities (3rd ed.). Belmont, CA: Wadsworth/Cengage.
Kloos, B., & Shah, S. (2009). A social ecological approach to investigating relationships between
housing and adaptive functioning for persons with serious mental illness. American Journal of
Community Psychology, 44(3–4), 316–326.
Kloos, B., Zimmerman, S. O., Scrimenti, K., & Crusto, C. (2002). Landlords as partners for pro-
moting success in supported housing:  “It takes more than a lease and a key”. Psychiatric
Rehabilitation Journal, 25(3), 235–244.
Leete, E. (1989). How I perceive and manage my illness. Schizophrenia Bulletin, 15(2), 197–200.
Levine, M., Perkins, D. D., & Perkins, D. V. (2005). Principles of community psychology: Perspectives
and applications (3rd ed.). New York: Oxford University Press.
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 275

Lotery, J. L., & Jacobs, M. K. (1994). The involvement of self-help groups with mental health and
medical professionals: The self-helpers’ perspective. In F. Lavoie, T. Borkman, B. Gidron (Eds.),
Self help and mutual aid groups: International and multicultural perspectives (pp. 279–302).
New York: Routledge.
Mank, D. (2000). Integration, organizational change and natural support. Integra, 3(8), 1–4.
Massey, O., & Wu, L. (1993). Important characteristics of independent housing for people with
mental illness: Perspectives of case managers and consumers. Psychiatric Rehabilitation Journal,
17, 81–92.
Maton, K. I. (2008). Empowering community settings: Agents of individual development, com-
munity betterment, and positive social change. American Journal of Community Psychology, 41,
4–21. doi:10.1007/s10464-007-9148-6
Mead, S.,  & Copeland, M.  H. (2000). What recovery means to us:  Consumers’ perspectives.
Community Mental Health Journal, 36(3), 315–328.
Meissen, G. J., Gleason, D. F., & Embree, M. G. (1991). An assessment of the needs of mutual-help
groups. American Journal of Community Psychology, 19, 427–442.
Miller, R. L., & Shinn, M. (2005). Learning from communities: Overcoming difficulties in dis-
semination of prevention and promotion efforts. American Journal of Community Psychology,
35(3/4), 169–183.
Minkler, M., & Wallerstein, N. (2005). Improving health through community organization and com-
munity building: A health education perspective. In M. Minkler (Ed.), Community organizing
and community building for health (pp. 30–52). New Brunswick, NJ: Rutgers University Press.
Monteiro, F., & Matias, J. (2007). Atitudes face ao recovery na doença mental em utilizadores e
profissionais de uma organização comunitária:  Uma ajuda na planificação de intervenções
efectivas? Análise Psicológica, XXV(1), 111–125.
Mueser, K. T., Becker, D. R., & Wolfe, R. (2001). Supported employment, job preferences, and job
tenure and satisfaction. Journal of Mental Health, 10(4), 411–417.
Murphy, A. A., Mullen, M. G., & Spagnolo, A. B. (2005). Enhancing individual placement and sup-
port: Promoting job tenure by integrating natural supports and supported education. American
Journal of Psychiatric Rehabilitation, 8, 37–61.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University Of Toronto Press.
Nelson, G., Ochocka, J., Janzen, R.,  & Trainor, J. (2006). A longitudinal study of mental health
consumer survivor initiatives: Part 1—literature review and overview of the study. Journal of
Community Psychology, 34(3), 247–260.
Nelson, G., Sylvestre, J., Aubry, T., George, L., & Trainor, J. (2007). Housing choice and control,
housing quality and control over professional support as contributors to the subjective quality
of life and adaptation to community living of people with severe mental illness. Administration
and Policy in Mental Health and Mental Health Services Research, 34(2), 89–100.
Newberry, J., & Strong, A. (2009). Beyond mental health maintenance: An evaluation framework
driven by recovery-focused outcomes. Canadian Journal of Community Mental Health, 28(2),
73–94.
Nussbaum, M. (2000). Women and development:  The capabilities approach. Cambridge, UK:
Cambridge University Press.
Oliveira, A. L., Duarte, T., & Amaro, J. P. (2007). Sentimento psicológico de comunidade e recovery
em residências comunitárias para pessoas com doença mental. Estudo monográfico. Lisboa,
PT: Instituto Superior de Psicologia Aplicada.
Onken, S., Dumont, J., Ridgway, P., Dornan, D., & Ralph, R. (2002). Mental health recovery? What
helps and what hinders? A national research project for the development of recovery facilitating sys-
tem performance indicators. Alexandria, VA:  National Technical Assistance Center for State
Mental Health Planning.
Ornelas, J. (2006). Contributos para o Relatório Preliminar da Comissão Nacional para a Reestruturação
dos Serviços de Saúde Mental.
Ornelas, J. (2008). Psicologia comunitária. Lisboa, PT: Fim de Século.
276 Transformative Change of Social Conditions

Ornelas, J., Aguiar, R., Sacchetto, B., & Jorge-Monteiro, M. F. (2012). Community-based participa-
tory research: A collaborative study to measure capabilities towards recovery in mental health
community organizations. Psychology, Community & Health, 1(1), 3–18.
Ornelas, J., Duarte, T., Almas, I., & Madeira, T. (2011). Relatório dos dois anos de implementação do
projecto Casas Primeiro na cidade de Lisboa. Lisboa, PT: AEIPS.
Ornelas, J., Vargas-Moniz, M., & Albuquerque, M. (2003). Empowerment e reabilitação de pessoas
com doença mental. In M. Verdugo Alonso, & F. Urriés Vega (Eds.), Investigación, innovación
y cambio:  Jornadas científicas de investigación sobre personas con discapacidad (pp. 407–419).
Salamanca, SP: Amarú Ediciones.
Ornelas, J., Vargas-Moniz, M.,  & Duarte, T. (2010). Community psychology and social
change:  A  story from the field of mental health in Portugal. Global Journal of Community
Psychology Practice, 1(1), 21–31. Retrieved from http://www.gjcpp.org/pdfs/2009-0013%20
Final%20Copy-010710.pdf
Parks, J., Svendsen, D., Singer, P., & Foti, M. E. (Eds.). (2006). Morbidity and mortality in people
with serious mental illness. B. Mauer, technical writer. Alexandria, VA: National Association of
State Mental Health Program Directors Council. Retrieved June 1, 2009, from http://www.
nasmhpd.org/docs/publications/MDCdocs/Mortality%20and%20Morbidity%20Final%20
Report%208.18.08.pdf
Pettigrew, T., & Tropp, L. (2000). Does intergroup contact reduce prejudice: Recent meta-analytic
findings. In S. Oskamp (Ed.), Reducing prejudice and discrimination (pp. 93–114). Mahwah,
NJ: Erlbaum.
PNSM—Plano Nacional para a Saúde Mental (2007–2016). Retrieved September 30, 2011, from
www.acs.min-saude.pt/2007/12/13/plano-nacional-de-saude-mental-2007-2016-aprovado-
em-conselho-de-ministro/
Prilleltensky, I., & Nelson, G. (2002). Doing psychology critically: Making a difference in diverse set-
tings. New York: Palgrave.
Provencher, H. L., Gregg, R., Mead, S., & Mueser, K. T. (2002). The role of work in the recovery of
persons with psychiatric disabilities. Psychiatric Rehabilitation Journal, 26(2), 132–144.
Rappaport, J. (1981). In praise of paradox:  A  social policy of empowerment over prevention.
American Journal of Community Psychology, 9, 1–25.
Rappaport, J. (1984). Studies in empowerment:  Introduction to the issue. Prevention in Human
Services, 3, 1–7.
Repper, J.,  & Perkins, R. (2003). Social inclusion and recovery:  A  model for mental health practice.
London: Baillière Tindall.
Revell, G., Inge, K., Mank, D., & Wehman, P. (1999). The impact of supported employment for peo-
ple with significant disabilities:  Preliminary findings from the National Supported Employment
Consortium. Richmond, VA: Commonwealth University.
Revell, G., Kregel, J., Wehman, P., & Bond, G. (2000). Cost effectiveness of supported employment
programs: What we need to do to improve outcomes. Journal of Vocational Rehabilitation, 14,
173–178.
Rich, R.  C., Edelstein, M., Hallman, W.  K.,  & Wandersman, A.  H. (1995). Citizen participation
and empowerment: The case of local environment hazards. American Journal of Community
Psychology, 23(5), 657–676.
Ridgway, P. (2001). ReStorying psychiatric disability: Learning from first person recovery narra-
tives. Psychiatric Rehabilitation Journal, 24(4), 335–343.
Ridgway, P., McDiarmid, D., Davidson, L., Bayes, J., & Ratzlaff, S. (2002). Pathways to recovery: A strengths
recovery self-help workbook. Lawrence, KS: University of Kansas School of Social Welfare.
Ridgway, P., & Zipple, A. M. (1990). The paradigm shift in residential services: From the linear con-
tinuum to supported housing approaches. Special Issue: Supported housing: New approaches
to residential services. Psychosocial Rehabilitation Journal, 13(1), 11–31.
Rogers, E., Chamberlin, J., Ellison, M.,  & Crean, T. (1997). A consumer-constructed scale to
measure empowerment among users of mental health services. Psychiatric Services, 48(8),
1042–1047.
 Trans for mative O rgani z ational Chang e in C ommuni t y Me ntal Health 277

Rollins, A. L., Bond, G. R., Jones, A. M., Kukla, M., & Collins, L. A. (2011). Workplace social net-
works and their relationship with job outcomes and other employment characteristics for
people with severe mental illness. Journal of Vocational Rehabilitation, 35(3), 243–252.
Sacchetto, B., & Vargas-Moniz, M. J. (2011). Capabilities theory in practice: Collaborative research with
people with an experience of mental illness. Paper presented at the 7th European Community
Psychology Association Conference, Paris.
Sen, A. (1992). Inequality reexamined. Cambridge, MA: Harvard University Press.
Solomon, P. (2004). Peer support/ peer provided services underlying processes, benefits, and criti-
cal ingredients. Psychiatric Rehabilitation Journal, 27(4), 392–401.
Stewart, M., Banks, S., Crossman, D.,  & Poel, D. (1994). Partnerships between health profes-
sionals and self-help groups:  Meanings and mechanisms. In F. Lavoie, T. Borkman,  & B.
Gidron (Eds.), Self help and mutual aid groups:  International and multicultural perspectives.
New York: Routledge.
Tsemberis, S., Gulcur, L., & Nakae, M. (2004). Housing first, consumer choice and harm reduc-
tion for homeless individuals with a dual diagnosis. American Journal of Public Health, 94(4),
651–656.
Unger, K., Pardee, R., & Shafer, M. (2000). Outcomes of postsecondary supported education pro-
grams for people with psychiatric disabilities. Journal of Vocational Rehabilitation, 14, 195–199.
Ware, N. C., Hopper, K., Tuggenberg, T., Dickey, B., & Fisher, D. (2007). Connectedness and citi-
zenship: Redefining social integration. Psychiatric Services, 58(4), 469–474. doi:10.1176/appi.
ps.58.4.469
Ware, N. C., Hopper, K., Tugenberg, T., Dickey, B., & Fisher, D. (2008). A theory of social integra-
tion as quality of life. Psychiatric Services, 59, 27–33.
Watson, A., & Corrigan, P. (2005). Challenging public stigma: A target approach. In P. Corrigan
(Ed.), On the stigma of mental illness: Practical strategies for research and social change (pp. 281–
295). Washington DC: American Psychological Association.
Wong, Y. I., & Solomon, P. (2002). Community integration of persons with psychiatric disabilities
in supportive independent housing: A conceptual model and methodological considerations.
Mental Health Services Research, 4, 13–28.
Yanos, P., Felton, B., Tsemberis, S., & Frye, V. (2007). Exploring the role of housing type, neighbour-
hood characteristics, and lifestyle factors in the community integration of formerly homeless
persons diagnosed with mental illness. Journal of Mental Health, 16(6), 703–717.
Zimmerman, M. (1995). Psychology empowerment: Issues and illustrations. American Journal of
Community Psychology, 23, 581–599.
Zimmerman, M. (2000). Empowerment and community participation: A review for the next mil-
lennium. In J. Ornelas (Ed.), Actas do II Congresso de Psicologia Comunitária (pp. 17–42).
Lisboa, PT: Instituto Superior de Psicologia Aplicada.
 13

Housing First and System/Community

Transformation
paul a goering and sam tsemberis

The thesis of this chapter is that the implementation of Housing First (HF), an
innovative program model, can catalyze conceptual and organizational changes
in adjacent systems that are directly related to its particular transformative char-
acteristics. Within the conceptual framework of implementation science, we use
our observations and experiences with a large national HF demonstration proj-
ect, At Home/Chez Soi, to illustrate how such changes occur. The HF program,
which includes an explicit value orientation that incorporates social inclusion and
social justice, fits within all of the key dimensions of transformative change using
a recovery-oriented approach, outlined in Nelson, Kloos, and Ornelas, Chapter 1,
this volume. We present a brief description of the program model and present case
vignettes from several communities illustrating how introducing HF disrupted and
transformed long-standing approaches in how existing systems of housing and care
addressed the problems of those who are homeless and with severe mental illness
and addiction issues.

Housing First
Housing First (HF) is an evidence-based intervention combining independent
housing, intensive community-based support and treatment, and a consumer-
driven philosophy that effectively ends homelessness for individuals with psychi-
atric disabilities, co-occurring addiction disorders, and other complex social and
medical needs. A key feature of the HF program is that it provides housing as a
matter of right and does not require consumers to “earn” their housing or prove
that they are “housing ready” by achieving sobriety or participation in psychiatric

278
 Hou s ing First and System/ Communi t y Trans for mati on 279

treatment as a precondition for housing. Consumers move directly into housing of

their choice, typically independent apartments of their own that are rented from
private landlords in the community. Community-based service teams, including
Assertive Community Treatment (ACT) or Intensive Case Management (ICM)
offer treatment and support to ameliorate clinical conditions and assist with social
and community integration. HF programs have proven highly effective in achiev-
ing housing stability and clinical improvements even for people who have long his-
tories of homelessness and avoidance of treatment. At its inception, this housing
as basic human right, harm reduction treatment approach was met with enormous
skepticism. However, today, after more than 20 years of a solid performance and a
growing evidence base, the HF program has been widely implemented across the
United States and in a rapidly growing number of cities in Canada, Europe, and
Australia. Evaluation studies in numerous cities by a growing number of research-
ers consistently report an 85% or higher housing retention rate (Calgary Homeless
Foundation, 2012), a rate also achieved by the original HF program developed in
New York City by Pathways to Housing (Tsemberis, 2010).

Reframing the Issue

Before there was HF, permanent, supported housing—what consumers who are
homeless want most—was offered only after consumers had successfully “gradu-
ated” from a series of programs that typically started with outreach or drop-in cen-
ters and included a long and successful stay in transitional housing that typically
demands sobriety and psychiatric treatment compliance. This “treatment-first”
approach aims to achieve clinical stability as a precondition for housing and is
conceptually consistent with the “psychiatric institutional” category described in
Chapter 1. Successful outcomes for these treatment-first housing readiness pro-
grams are measured by months to years of compliance with psychiatric medication
and sobriety. See Figure 13.1 for a description of the steps in the traditional sup-
portive housing model and the leap to permanent housing provided by HF.
Even for those consumers who can successfully navigate each step of the
treatment-first system, reach the top, and enter into traditional supportive housing,
most supportive housing programs consist of single-site buildings with studio units
in buildings inhabited either exclusively or mainly by other people with psychiatric
disabilities and/or addiction problems. Single-site programs have on-site support
and/or treatment services that range from light to intensive. Although Housing
First is gaining popularity, the single-site, treatment-first approach still dominates
the supportive housing field despite the fact that it is founded on several empiri-
cally untested assumptions including that (a)  clinicians are the experts who can
best determine the type of housing best suited to the consumers needs, (b) most
consumers with psychiatric disabilities require around-the-clock supervision,
(c) consumers with a diagnosis of severe mental illness are not capable of managing
280 Transformative Change of Social Conditions

nt
me
ace
lter pl
She

Homeless

Figure 13.1  Housing First: A program that by-passes the treatment compliance and
sobriety transitional housing programs and provides immediate access to independent,
permanent housing with flexible support services (from Tsemberis & Henwood, 2013).

independent housing, (d) consumers with co-occurring addiction disorders must

first achieve sobriety and maintain abstinence before they can maintain their own
housing, and (e) providing housing to people in the throes of active addiction can
be considered a form of enabling and will likely result in housing loss.
The treatment-first approach persists even in light of a growing body of research
evidence (Greenwood, Schaefer-McDaniel, Winkel,  & Tsemberis 2005; Padgett,
Stanhope, Henwood, & Stefancic, 2011, Tsemberis, Kent, & Respress, 2012; Yanos,
Stefancic,  & Tsemberis, 2012)  indicating that consumers with complex mental
health and addiction problems can set and attain their own goals and, with the right
supports, cannot only live independently, but are also able to effectively manage
their housing, mental health, and addiction issues; get a job; reunite with family;
and much more. Furthermore, studies of people who remain homeless for long peri-
ods of time find that programs requiring treatment compliance and sobriety as pre-
conditions for housing tend to exclude many of the chronically homeless because
they are regarded as “not ready for housing” (Luhrmann, 2008; O’Hara, 2007). And
those consumers with co-occurring diagnoses who do manage to comply with the
treatment-first requirements and gain access to supportive housing often live at risk
of eviction because most programs require continued compliance and sobriety as a
condition for remaining housed, and a relapse can result in a return to homelessness.

Explicit and Implicit Values Orientation

If the treatment-tied-to-housing approach is fraught with erroneous clinical
assumptions and creates barriers to access and retention for some of the very people
it seeks to serve, why does it persist? Part of the answer is that government policy
and consequently government funding is often available for the development and
construction of this type of supportive housing. Another reason for its continued
dominance concerns the fact that there is an enormous discrepancy between the
supply and demand of any type of affordable and supportive housing. For every
 Hou s ing First and System/ Communi t y Trans for mati on 281

vacant supportive housing or social housing unit, there can be a waiting list of thou-
sands of applicants. Thus, housing providers can easily meet their residential census
and continue to select only those applicants who successfully meet all of their pre-
requisites, including clinical stability and sobriety. Consumers who cannot man-
age to get on the waiting lists or who cannot or will not meet these prerequisites
continue to remain homeless for years, often cycling in and out shelters, emergency
rooms, hospitals, detox, and jail.
Finally, there are subtly held but powerful social and personal values concerning
the poor that influence social policy and contribute to the design of treatment-first.
Some of these values were evident centuries ago in the use of the “paupers prisons.”
These prisons emphasized the belief that people who were poor must be punished
because they did not meet their social responsibility—in today’s terms, they could
not pay their bills or their mortgages. Similarly, there is also a long history of social
policy based on the assumption that people who need help must also help them-
selves or else they will always remain dependent on (hard-working) taxpayers.
This policy approach, driven by carefully calculated hazard ratios aimed at pro-
viding some services but not making the services too comfortable, begins from
the assumption that it is a person’s personal characteristics or character flaws that
cause addiction, mental health problems, or poverty. In this belief system, home-
lessness is thought to result from excessive drug or alcohol use or a failure to pur-
sue treatment. It may be a constellation of these erroneous assumptions that led to
the development of an approach that aims to remediate clinical conditions by way
of improving the person’s character and that contributed to the approach we call
“treatment-first.”
However, from a social justice perspective, the hardships faced by people who
are homelessness and living in poverty are understood as not resulting from char-
acter flaws, but as resulting from not having enough money or access to basic
resources, like affordable housing. This view is consistent with the consumer’s per-
spective: homelessness is not seen as resulting from problems, it is because the con-
sumer did not have enough money to pay the rent. People with mental health and
addiction problems and who are receiving benefits cannot keep up with rising rent
costs. If made homeless, they simply do not have enough money to secure housing
again:  their benefits do not provide enough for them to both meet their day-to-
day survival needs and save enough for the security or damage deposit and first
month’s rent required by most landlords. As the amount of time spent homeless
increases, hope wanes and physical and mental health deteriorates. The homeless
are at great risk for exposure, trauma, victimization, and arrests. They ricochet in
and out hospitals, detox treatments, emergency rooms, jails, and intermittent stays
in local shelters. There emerged a growing awareness and body of evidence that this
subgroup among the homeless—the “chronically homeless” or “frequent users”—
are not only not well served by existing systems and continue to remain homeless,
but are also utilizing disproportionately much higher rates of costly acute-care
282 Transformative Change of Social Conditions

system resources (Culhane, Metraux, & Hadley, 2002; Hopper, Jost, Hay, Welber, &
Haugland, 1997).
This service utilization and economic analysis increased frustration and dissat-
isfaction with the treatment-first approach and opened the door for many com-
munities to consider an experiment with HF. For example, the Calgary Homeless
Foundation funded that city’s initial HF program with the mandate to provide
housing and services for the 52 individuals in that city with the highest number of
combined hospital, detox, and jail visits in the previous year. Another program, in
Seattle, Washington, identified a subgroup of people who were chronically home-
less and had severe addiction problems. One year after they were housed, the Seattle
cohort of 75 individuals showed a $4 million reduction in service utilization costs
compared to the year prior to being housed (Larimer et al., 2009). The cost savings
and service utilization arguments are very compelling and highly influential when
making the case for trying a new approach, especially in those communities that
were not eager to embrace the harm reduction and expanded risk taking associated
with the HF approach (Culhane, 2008). The economic argument, combined with
the increase in the numbers of visibly homeless on the streets, have powerful cumu-
lative effects and make a compelling case that it is time to try a new program practice
(Stanhope & Dunn, 2011).

Rethinking Implementation
Changing wide-scale policy and practice is a complex and challenging endeavor
no matter what social determinant or best practice is under consideration.
Implementation science is a growing field relevant to the concept of transforma-
tive change, and we turn to it now for further insights about the adoption of HF.
Three narrative research syntheses looking at different types of programs and tar-
get populations all come to convergent conclusions about the main factors affect-
ing implementation (Durlak & DuPre, 2008; Fixsen, Naoom, Blase, Friedman,
& Wallace, 2005; Greenhalgh, Robert, Macfarlane, Bate, & Kyriakidou, 2004).
All identified the characteristics of the innovation as an important factor that
determines its adoption/implementation by providers. Adaptability (flexibility)
and compatibility (contextual appropriateness, fit, match congruence) are con-
sistently related to implementation (Durlak & DuPre, 2008). The HF approach,
with its emphasis on a recovery-oriented philosophy of care, is adaptable and con-
gruent with the values of progressive mental health and housing programs. But, as
argued earlier, in many ways, it also challenges existing practices and typical ways
of doing business in both sectors. It also requires that the programs and systems
that the programs reside in and interact with must make radical shifts from what
Nelson et al. (Chapter 1, this volume) refer to as an incremental and rehabilita-
tive framework to a more transformative one. There is an inspirational quality to
HF that gives new meaning to the work of those who are frontline service and
 Hou s ing First and System/ Communi t y Trans for mati on 283

housing providers and acts as an important motivational driver for change. HF is

thus different from other evidence-based practices that are more procedural and
less value-based.
Usually, the outcome of interest in studies of implementation is the program’s
success in putting the best practice into action. A  multilevel, ecological perspec-
tive is often used by those who try to understand what determines that outcome
(Durlak  & DuPre, 2008; Wandersman et  al., 2008). Community factors and the
organizational context are viewed as either facilitating or hindering the process of
implementation. It is acknowledged that these factors interact as they influence
the process of change, but the direction of that influence is always from the envi-
ronment to the innovation. For example, a study of the implementation of HF for
actively substance-using individuals in nine New York City provider agencies found
that a misalignment between HF program philosophy and the philosophy of the
host agency created problems for the HF program staff in three of the nine agen-
cies (CASAHOPE, 2012). An ecological view of transformative change implies that
influence could be bidirectional. We should also look for possible positive impacts
of program change on the environments and systems in which they operate. The
ripple effects of transformative program change might very well influence programs’
surrounding environments, thus creating conditions that make related systems
more efficient and producing the conditions in which wider dissemination and scal-
ing up of the program model is more likely. We next draw on our experiences with
a large demonstration project that is implementing HF in five Canadian cities to
illustrate how this can happen.

At Home/Chez Soi as a Catalyst for Wider System Change

The At Home/Chez Soi project provides a unique opportunity to take action in var-
ied contexts and learn about the processes that result, both planned and unplanned.
In particular, the process of implementing the HF intervention and subsequently
conducting fidelity assessments has uncovered examples that are worthy of fur-
ther consideration. In 2009, the Mental Health Commission of Canada (MHCC)
launched At Home/Chez Soi, a four-year, five-city research demonstration project
in mental health and homelessness. At Home/Chez Soi is a pragmatic, multisite field
trial of the effectiveness and costs of a complex community intervention wherein
participants who are homeless and experiencing mental illness are randomized to
experimental and usual-care conditions. Participants in the experimental condi-
tions receive recovery-oriented HF interventions that use consumer choice as the
driving force for providing housing and support services. The goal of At Home/
Chez Soi is to influence policy by finding out what service system interventions
best achieve housing stability and improved health and well-being for those who
are homeless and experiencing mental illness through a rigorous evaluation using
284 Transformative Change of Social Conditions

both quantitative and qualitative methods (Goering et  al., 2011; Macnaughton,
Goering, & Nelson, 2012).
HF was chosen as the intervention because it combines three evidence-based
approaches (ACT, ICM, and supported housing) provided within a recovery-based
philosophy (Bond, Drake, Mueser, & Latimer, 2001; Nelson, 2010; Tsemberis,
2005). When implemented correctly, HF programs are expected to achieve posi-
tive outcomes in several domains, including housing tenure, quality of life, commu-
nity integration, and recovery, as well as reductions in acute-care service utilization
(Tsemberis, 2010). Thus, HF is a complex community intervention that features
multiple, interacting components and sectors across several levels (e.g., individual,
program, community, system).

Vignettes
We now briefly describe reports from those who have witnessed how putting HF
into action can initiate new ways of doing business at the organization and systems
level. We highlight examples in which the transformative components of the pro-
gram model have successfully and unsuccessfully played a role in the broader influ-
ence of the service system.

New Space to Play

This example illustrates how new interorganizational relationships were forged as
a by-product of project planning and implementation. Executive directors of two
large provincial health regions in New Brunswick described their experience with
the Moncton implementation process during a breakfast meeting with a member of
the team that assessed the fidelity of the Moncton HF program. Both directors have
been involved from the beginning of the project. They were drawn to the project
by the site coordinator’s enthusiasm, as well as by the best practice orientation of
a national project that features housing as a key determinant of health. They were
previously frustrated with their inability to provide the “dignity of having a home”
when attempting to intervene to meet health care needs. There was not always a
good fit between aspects of this innovative HF service delivery and the typical ways
of doing business within their large government organizations. Their background
role was to “work the system” to handle the necessary modifications in human
resources, finance, and information technology needed to give program leads the
freedom to implement what they required to be successful. This meant an initial
heavy investment of time and energy. For example, creating permanent positions
for the team members was not easy, especially for new types of roles like the occu-
pational therapist, but it was the best way to make sure that experienced staff would
apply to work with this program. The regional offices that administer health care
services have changed as a result of this innovation. The changes they made will
 Hou s ing First and System/ Communi t y Trans for mati on 285

facilitate long-term sustainability and possibly allow for scaling-up to meet the com-
munity’s need simply by changing the practice of the health regions being so closely
involved in the program’s operations.
Both of these directors are strong supporters of the HF model and particularly
of the opportunities that it created to work across interagency and interdepartmen-
tal boundaries. The collaborations that result when social development and health
and housing are at the same table were highlighted. For example, not being able
to apply for income assistance without a permanent address was an implementa-
tion barrier that was collectively resolved, even though past attempts to do the same
thing for shelter residents had failed. One of the directors used a napkin to dia-
gram the changes that have occurred. “These three circles which don’t touch each
other are how health, housing, and social development have always related to each
other. . . . Now we have three overlapping circles, and this new space to play in the
center is where we have developed new and better ways of communicating. It has
been such a pleasure to do it!” They also noted that their ability to problem solve
in creative ways was facilitated by the unique leadership style of the site coordina-
tor, who rallies and inspires others. “You can’t clone her, but you should try. She is
a champion who knows how to empower others to make dramatic changes that are
based on a common set of values.”

New Kid on the Block

Another unanticipated development was seeing how the expanded role for an exist-
ing community agency could win over a resistant mental health system. The pro-
gram manager and executive director of the agency that hosted the ACT program
in Vancouver described their interactions with the wider mental health system as
an implementation challenge from the beginning. During the process of selecting
an agency to provide the ACT service, interest was expressed by the local health
authority, an urban hospital, and their agency, a nongovernmental organization
(NGO) that provides community-based outreach and a housing support program.
A Call for Proposals was developed and a review committee assembled; although
attempts were made to explore a partnership model, ultimately, the review com-
mittee selected them because of their very strong recovery-based approach to
providing services. At the time of the decision, concerns about the ability of their
community-based organization to develop and oversee an interdisciplinary team
were voiced. In fact, agency directors recognized that there was a lot to be learned.
“We had never had to deal with medical-legal issues.” Integrating a psychiatrist and
nurse into a team of case managers took some adjustment. Developing referral and
communication channels with the local health authority and the downtown hos-
pital, both of which were skeptical about their clinical competence and credibility,
also took time. “It was the opportunity to inject a radically different attitude about
the prospects of recovery for participants who had been written off by the rest of
286 Transformative Change of Social Conditions

the system that kept me going” is how the program manager explains his persever-
ance in a contested role for his agency. Within the first year, the agency received
high fidelity ratings for its HF programs. A passionate commitment to the recov-
ery philosophy was evident, combined with a highly functional ACT team. Their
success with very troubled, long-term homeless individuals has won the respect
of their clinical partners. Strong partnerships have been developed with the health
authority, local hospitals, and other related agencies and organizations. Now, as the
province of British Columbia plans to fund more ACT teams, the option of having
a community-based NGO as a home is on the table, and this agency is being asked
to provide training and technical assistance to the new teams.

Housing the Homeless Recruits New Stakeholders

We learned how bringing private landlords into the project as partners can stimu-
late the creation of new community relationships. One of the dramatic moments
in landlord participation occurred at a meeting designed to explain the project to
landlords that was hosted by the At Home/Chez Soi site coordinator for the City of
Moncton. The population of greater Moncton is approximately 175,000, and a proj-
ect of this size—housing 125 people who have been homeless for years—is highly
visible. Many people who are homeless spend their time downtown, and they are
more or less familiar faces to many providers and caring citizens of this city. This is
not a place where an HF project can be implemented without every service pro-
vider knowing about it. The approximately 30 landlords who were invited were on
a list that showed they were already working with the local housing authority, yet
they had seldom worked with each other or with service agencies in a common
pursuit. In all, a total of 21 landlords came to the meeting. The HF program was
explained. There were many questions concerning the characteristics of the popu-
lation. It was explained that how a person looks when he or she is homeless is not
at all the same as that person looks after being housed. There were lots of practical
and business questions: exactly how would the rent be paid? How are the support
services provided? Who would be providing the support? What is the relationship
between the landlords and the program? And there were many others. Judging by
the nature of the questions, it seemed as if the landlords were engaged. They had
correctly understood that they were probably housing some people who were hav-
ing problems already and that the main difference was that, by working with the HF
program, there would actually be a support team available that they could contact
if there were any problems with the tenants. The moment of truth arrived as the
meeting was drawing to a close. The site coordinator brought out a large glass jar
and placed it at the corner of the table near the exit of the room. She then instructed
that landlords interested in working with the project drop their business cards into
the jar on their way out. When the room cleared, we counted: 18 of 21 landlords
had left a card!
 Hou s ing First and System/ Communi t y Trans for mati on 287

This was the beginning of building a new community of landlords who were
joined in common actions for a common goal. Over the life of the project, they not
only provided apartments and worked with the service teams to maintain tenancies,
but they also turned up for landlord appreciation events, participated in qualitative
research interviews, and reported on their shared experiences. Their partnership
with the project has provided them with a vehicle for developing new relationships
with each other and with the broader community where they live and do business.

Social Housing Digs in Its Heels

Not all of the experiences were positive. Introducing a new paradigm failed to
convince some local interests to participate. By and large, in Montréal, housing
services offered to homeless individuals are provided mostly through large shel-
ter organizations, with some individuals having access to social housing (e.g.,
government-funded, congregate living settings that are dedicated to low-income
populations). Within the housing sector and the local community organizations
there was a consensus that social housing is most preferable for vulnerable popula-
tions, such as the one served by At Home. To enlist the local housing community, it
was considered important to include in the study existing practices that were valued
by stakeholders. The thoughtful project planning team began working with existing
services providers dedicated to the target population and proposed a unique third
arm for the trial that would assign participants to social housing. Including both
scattered site apartments and a congregate social housing option was seen as one
way to address the controversy about relative effectiveness and costs while provid-
ing an active role for the social housing community. But the decision to compare
outcomes for individuals housed in scattered site apartments with outcomes for
those in social housing was not easy to implement. There continued to be significant
resistance to the idea of “a US capitalist model” being imported into a community
that saw government as responsible for providing low-income housing for disadvan-
taged populations and was very wary of using the private market to do so. Initially,
this reluctance to subscribe to HF practices by the major housing players was coun-
tered by creating financial incentives for the social housing landlords in order to
secure the necessary units. But even with the added dollars that would have made it
financially attractive to participate, once the study began, there were an insufficient
number of providers in that sector who were willing to offer rooms/units in their
buildings. After several months of trying unsuccessfully to recruit social housing
partners using persuasion and social networks, the study design had to be revisited
and the randomization of participants into social housing dropped.

Adding New Postal Codes Options for Housing the Formerly Homeless
Sometimes, expanding the geographic boundaries of where housing is available
requires rethinking. In many cities, there are only certain downtown neighborhoods
288 Transformative Change of Social Conditions

where people who are homeless can stay. This is usually an older downtown area,
out of the main business district, and including many services for the poor and the
homeless. In the United States, Los Angeles’s Skid Row is an extreme version of this
clustering of homeless programs and people who are homeless. New York’s Bowery
is another such neighborhood. In Canada, Vancouver’s Downtown East Side along
East Hastings Street is a good example of such neighborhood; it has a large home-
less population and a concentration of services and housing options for people who
are homeless. In most cities, these neighborhoods have a long history of serving
the poor and a well-established service consortium. The neighborhoods are part
of the city’s culture, social service planning, and philanthropic efforts, and they are
perceived by the city’s residents as the “place for the homeless.” Introducing the
HF program into such a well-established community provided some interesting
challenges.
The first issue that created some turbulence concerned the use of a scattered-site
housing model (apartments located throughout the city’s affordable housing neigh-
borhoods) as opposed to using the single-site congregate model, as is the tradition
in the East Hastings neighborhood. There was some resolution of this issue because
the HF program is based on consumer choice: if the consumer wanted to live in
a single-site building on East Hastings, then that’s what the team would provide.
Although some people chose to find apartments in the “old neighborhood,” most
wanted to leave; some, in fact, were greatly relieved to go. These outcomes are slowly
changing some long-held culturally sanctioned beliefs about what people who are
homeless want. When given the opportunity to express their own preferences, peo-
ple who were homeless opted for a wider variety of postal codes.

Conclusion
These examples raise the question of the advantages and disadvantages of using
new funding and the framework of a research demonstration project as a catalyst
for system change. The introduction of HF into a community of traditional provid-
ers requires a great deal of sensitivity and tact. On the one hand, providers who
have been working with the local homeless population must be given credit for their
commitment to caring for the poorest people in their community; on the other
hand, they need to accept that their approach has been unsuccessful with a certain
segment of the homeless population and that a new approach is needed. One way to
facilitate this change is to provide new funding for HF programs. Among the exist-
ing providers, there will emerge several who are open to try a new approach. If there
has been some resistance to implementing the program and it is being introduced
from the top down (e.g., a department of mental health), it is best to describe it as an
experimental or demonstration program so that it is perceived as outside the usual
service system and that it may only be there for the duration of the experiment. In
 Hou s ing First and System/ Communi t y Trans for mati on 289

the case of the At Home/Chez Soi project, implementation was typically facilitated
because it had both features: it introduced HF by providing significant new funding,
and it was introduced as an experiment. Conversely, in Montréal, where the resis-
tance to HF was strongly ideological and political, there was much discussion about
the limited duration of the research project. The lack of up-front commitments by
governments to guarantee sustaining the intervention became a significant barrier
to getting the original program and research design implemented. Sustainability
planning is a challenge for large-scale demonstration projects that have to gather
evidence about effectiveness while simultaneously convincing governments to pro-
vide funding beyond the duration of the project for those who are receiving the
intervention. It requires multilevel and multipronged action on the part of all stake-
holders to ensure that housing and supports are continued for those in the experi-
ment while wider system transformation takes place.
This five-city experiment illustrates how the implementation of HF can contrib-
ute to wider change in the practice, policy, and cultural environments. This innova-
tion naturally acts as a pebble in a pool, creating ripple effects by influencing and
challenging the larger system/community context in which it is implemented. The
pebble is the fundamental task of getting individuals housed where they choose, no
matter what. This task requires program elements that then create broader effects in
housing practices and mental health services practices, planned and unplanned. The
At Home/Chez Soi experience suggests that the integration of housing and treat-
ment services into one program model catalyzes new modes of services integration
and intergovernmental collaboration at the policy level. Selecting agencies that are
strongly oriented toward social justice and recovery but inexperienced with ICM or
ACT is a powerful tool for not only implementing the program, but also for chang-
ing the landscape of local practices. Introducing scattered-site rental housing as a
program option and involving community landlords significantly increases housing
options and neighborhoods while changing the practice of existing housing provid-
ers and housing policy makers.
Some of the factors that make the transformation more or less likely to occur
are related to the value orientation and framing of the issue by those in the commu-
nity where implementation is taking place. Moving from a treatment-plus-housing
frame to an HF frame challenges assumptions about appropriate provider agencies
and expands the interorganizational circle beyond health. In some ways, it may be
easier to implement such an innovation in communities with less well developed
homeless service systems, where the attitudinal and political forces that may react
are weaker. On the other hand, community capacity is also one of the factors that
influence successful implementation. Finding agencies and staff with the required
skills and expertise to deliver a complex intervention is easier in communities with
well-developed homeless service systems. Recognition of the multiple, interacting
system-level processes that are set into motion and may influence the outcome of
an implementation is the first step toward being able to better predict and harness
290 Transformative Change of Social Conditions

the potential for transformation. Systematically collecting information about what

is happening using a formative evaluation process (Macnaughton et al., 2012) will
provide immediate feedback to help guide whatever corrections are possible in the
implementation strategies.
In summary, the introduction of a complex community programs like HF, with
its many transformative elements, can change the lives of those who are served and
the environments/systems in which the programs are operating. Further consid-
eration of the bidirectional and multilevel influences of innovation implementa-
tion will help us to more quickly assure the broader uptake of a recovery-oriented
approach.

References
Bond, G. R., Drake, R. E., Mueser, K. T., & Latimer, E. (2001). Assertive community treatment
for people with severe mental illness:  Critical ingredients and impact on patients. Disease
Management & Health Outcomes, 9(3), 141–159.
Calgary Homeless Foundation. (2012). The state of homelessness in Calgary in 2012.
Retrieved  June 11, 2012, from http://calgaryhomeless.com/assets/research/The-State-of-
Homelessnessonlineversion.pdf
CASAHOPE. (2012). Unlocking the door:  An implementation evaluation of supportive housing for
active substance users in New York City. Retrieved April 22, 2012, from www.casacolumbia.org/
upload/2012/20120322casahope2brf.pdf
Culhane, D. P. (2008). The cost of homelessness: A perspective from the United States. European
Journal of Homelessness, 2, 97–114.
Culhane, D. P., Metraux, S., & Hadley, T. (2002). Public service reductions associated with place-
ment of homeless persons with severe mental illness in supportive housing. Housing Policy
Debate, 13(1), 107–163.
Durlak, J. A., & DuPre, E. P. (2008). Implementation matters: A review of research on the influence
of implementation on program outcomes and the factors affecting implementation. American
Journal of Community Psychology, 41, 327–350.
Fixsen, D. L., Naoom, S. F., Blase, K. A., Friedman, R. M., & Wallace, F. (2005). Implementation
research: A synthesis of the literature. (FMHI publication 231). Tampa, FL: University of South
Florida, Louis de la Parte Florida Mental Health Institute, The National Imlementation
Research Network.
Goering, P. N., Streiner, D. L., Adair, C., Aubry, T., Barker, J., Distasio, J., et al. (2011). The At Home/
Chez Soi trial protocol: A pragmatic, multi-site, randomized controlled trial of Housing First
in five Canadian cities. BMJ Open, 1, e000323, 1–18. Retrieved April 22, 2012, from http://
bmjopen.bmj.com/content/1/2/e000323.full
Greenwood, R. M., Schaefer-McDaniel, N., Winkel, G., & Tsemberis, S. (2005). Decreasing psy-
chiatric symptoms by increasing choice in services for adults with histories of homelessness.
American Journal of Community Psychology, 36, 223–228.
Greenhalgh, T., Robert, G., Macfarlane, F., Bate, P., & Kyriakidou, O. (2004). Diffusion of inno-
vations in service organizations:  Systematic review and recommendations. The Milbank
Quarterly, 82(4), 581–629.
Hopper, K., Jost, J., Hay, T., Welber, S., & Haugland, G. (1997). Homelessness, severe mental illness
and the institutional circuit. Psychiatric Services, 48(5), 659–665.
Larimer, M. E., Malone, D. K., Garner, M. D., Atkins, D. C., Burlingham, B., Lonczak, H. S., et al.
(2009). Health care and public service use and costs before and after provision of housing first
 Hou s ing First and System/ Communi t y Trans for mati on 291

for chronically homeless peresons with severe alcohol problems. Journal of the America Medical
Association, 301(13), 1349–1357.
Luhrmann, T.  M. (2008). “The street will drive you crazy”:  Why homeless psychotic women in
the institutional circuit in the United States often say no to offers of help. American Journal of
Psychiatry, 165, 15–20.
Macnaughton, E., Goering, P., & Nelson, G. (2012). Exploring the value of mixed methods within
the At Home/Chez Soi Housing First project: A strategy to evaluate the implementation of a
complex population health intervention for people with mental illness who have been home-
less. Canadian Journal of Public Health, 103(Suppl 1), 557–562.
Nelson, G. (2010). Housing for people with serious mental illness:  Approaches, evidence, and
transformative change. Journal of Sociology and Social Welfare, 37(4), 123–146.
Nelson, G., Kloos, B., & Ornelas, J. (in press). Transformative change in community mental health:
A community psychology framework. In G. Nelson, B. Kloos, & J. Ornelas (Eds.), Community
psychology and community mental health: Towards transformative change. New York: Oxford
University Press.
O’Hara, A. (2007). Housing for people with mental illness: Update of a report to the President’s
New Freedom Commission. Psychiatric Services, 58, 7, 909–913.
Padgett, D.  K., Stanhope, V., Henwood, B.  F.,  & Stefancic, A. (2011). Substance use outcomes
among homeless clients with serious mental illness: Comparing housing first with treatment
first programs. Community Mental Health Journal, 47, 227–232.
Stanhope, V., & Dunn, K. (2011). The curious case of Housing First: The limits of evidence based
policy. International Journal of Law and Psychiatry, 34, 275–282.
Tsemberis, S. (2005). 2005 APA Gold Award:  Providing housing first and recovery services for
homeless adults with severe mental illness. Psychiatric Services, 56(10), 1303–1305.
Tsemberis, S. (2010). Housing First: The Pathways Model to end homelessness for people with mental
illness and addiction. Center City, MN: Hazelden.
Tsemberis, S., & Henwood, B. (2013). Housing First: A recovery-oriented program for people who
are homeless. In V. Vanderviv (Ed.), Best practices in mental health: A pocket guide (pp. 132–
150). Chicago: Lyceum Books.
Tsemberis, S., Kent, D., & Respress, C. (2012). Housing stability and recovery in DC’s chronically
homeless with co-occurring disorders. American Journal of Public Health, 102, 13–16.
Wandersman, A., Duffy, J., Flaspohler, P., Noonan, R., Lubell, K., Stillman, L., et al. (2008). Bridging
the gap between prevention research and practice: The interactive systems framework for dis-
semination and implementation. American Journal of Community Psychology, 41, 171–181.
Yanos, P.  T., Stefancic, A.,  & Tsemberis, S. (2012). Objective community integration of mental
health consumers living in supported housing and of others in the community. Psychiatric
Services, 63, 438–444.
 14

Supported Education as a Vehicle for

Transformational Change in Mental Health
Treatment Philosophy
karen v. unger

The concept of supported education has evolved slowly, beginning with the teach-
ing of employment-related skills in the early days of the community mental health
(CMH) movement. With the growing recognition of the larger issues of commu-
nity integration and stigma, programs moved from mental health treatment settings
to educational environments. Today, people with mental illness are enrolled in
colleges and universities in increasing numbers. This chapter describes the history
of supported education and defines the concept and underlying values. Outcome
studies are reviewed and issues that affect student’s postsecondary completion are
described. Issues that affect postsecondary education institutions are elaborated,
and the need for CMH services is described. Specific needs of students, educational
institutions, and mental health programs to meet the challenges of supported edu-
cation are summarized. Finally, the importance of forming community coalitions is
emphasized to develop the broad-based input and support necessary to fully realize
the potential for supported education as a vital part of transforming our ideas of
mental illness and mental health services.

A Historical Perspective on Supported Education

In the early 1940s and 1950s, in the United States, large psychiatric hospitals were
the norm. They were often small cities on large tracts of land that included farmlands
and orchards. Although there were many problems, there were also opportunities.

292
 Sup por ted Education a s Trans for mative Chang e 293

The higher functioning patients were often the ones who, with staff supervision,
maintained the farms. They also provided much of the labor within the hospitals,
assisting with maintenance and other service tasks (Unger, 2004).
With the CMH movement, the development of psychotropic medications,
and the mandate to pay patients for their work, higher functioning patients were
moved from the hospital into residential settings in the community. Here, they
spent their time in day treatment programs, partial hospitalization programs, and,
occasionally, sheltered workshops. These former patients, removed from their con-
tributive roles in the hospitals, often spent their days without meaningful activities.
Some rare opportunities to work were available through sheltered workshops and,
later, train-and-place models (Corrigan  & McCracken, 2005; Wehman, 1996).
Educational opportunities included classes on topics such as anger management
skills, how to read and discuss a newspaper article, or how to express feelings. The
notion that clients could work and contribute to the greater good was largely aban-
doned, and the emphasis was on maintaining the status quo.
Day treatment programs began changing in the 1970s and 1980s with the expan-
sion of the CMH movement and the development of a rehabilitation philosophy.
The CMH movement emphasized treatment within the community, crisis interven-
tion, and use of community resources (Levine, 1981). Rehabilitation philosophy
posited that, with support and training, people with mental illness could learn new
skills (Anthony, 1979). Work enclaves replaced sheltered workshops, and other
advancements occurred in the employment arena. Later, the concept of supported
employment was articulated, and experimental programs were implemented
(Bond, Becker, & Becker, 1997).
On the education side, a number of articles emerged describing educational pro-
grams at mental health centers. Clients were taught personal hygiene (Scoles & Fine,
1979), cooking and how to use public transportation (Stein, Test, & Marx, 1975),
interpersonal skills (Hinterkopf  & Brunswick, 1975), socialization skills (Bell,
1970), problem-solving skills (Coche  & Flick, 1975), money management skills
(Weinman, Sanders, Kleiner, & Wilson, 1970), and the like. A rationale underlying
these programs was that if clients could learn new skills, perhaps they could con-
tinue their formal education. This seemed particularly important for young adults
who were not attending or responding to the day treatment milieu with older, more
chronically ill adults.
A 1985 survey of the members of the National Alliance for the Mentally Ill,
conducted by the Psychiatric Rehabilitation Center of Boston University (Spaniol,
Jung, Zipple, & Fitzgerald, 1985), reported that 91% of the sons and daughters of
the respondents had completed high school and that 58% had completed some col-
lege. A representative sample from Fountain House in New York City found that
70% of their participants had completed high school and 50% had some college
(Malamud, 1986). The message was clear. Most of the clients had had a successful
294 Transformative Change of Social Conditions

education experience, and many were eager to resume their education, either to
complete a General Education Diploma (GED) at the secondary level or to return
to college or university at the postsecondary level.
In the United States, the Rehabilitation Act of 1973 prohibited discrimina-
tion against people with disabilities in any institution that received federal funds.
Although progress had been made in integrating people with physical disabilities
into colleges and universities, people with mental illness were still subject to poli-
cies that prevented them from achieving equal status. Those policies often took
the form of dismissal if someone was identified as having a mental illness, often
“for their own good” (Pavela, 1982–1983). A landmark publication, The Dismissal
of Students with Mental Disorders (Pavela, 1985) outlined policies and procedures
based on federal law, describing what was and wasn’t appropriate for including or
excluding students with mental illness in college and university environments.
It was a wake-up call for institutions to adhere to the mandates dictated by the
Rehabilitation Act of 1973. However, many institutions were still reluctant to
fully embrace this new population onto in their campuses, and policies of exclu-
sion changed slowly.
Change accelerated with the passage of the American with Disabilities Act of
1995, which reiterated and added to the mandates of the Rehabilitation Act. More
students with mental illness returned to school, and they began requesting accom-
modations from the Offices of Disability Services (Unger, 1998). Progress was
made, but, by law, the only services the colleges and universities were required to
provide was accommodation and academic counseling. Additional services that
were highly desirable for students with mental illness, such as assistance with regis-
tration and financial aid and personal support, were not available. Those services, if
they were to be provided, had to come from other areas.
Several mental health programs stepped up to the plate and developed what was
to become supported education. Recognizing the stigma of attending day treat-
ment programs, the first education programs were based on college campuses. One
of the first program to demonstrate these ideas was at George Brown College in
Toronto, Canada (C. Schwengen, personal communication, 1981; in Unger, 1987).
Although the new students didn’t actually attend college classes, they learned
community living skills in classrooms on campus, a big move from day treatment
programs. A  second program, located at Reading Area Community College, in
Reading, Pennsylvania (Heffner  & Gill, 1981)  had a vocational orientation with
three 10-week noncredit classes conforming to the regular academic schedule.
Neither of these programs reported outcomes.
A third program, located at Boston University, also conformed to the academic
class schedule. Students attended Sargent College and learned how to develop and
implement a career goal (Unger, Anthony, Sciarappa,  & Rogers, 1991). During
their second or third semester, they matriculated to other colleges to take for-credit
classes.
 Sup por ted Education a s Trans for mative Chang e 295

Issues that Effect Students’ Postsecondary

Education Completion
Supported education programs emerged to address the needs of people with mental
health issues regarding their educational goals. During the course of their studies,
students with mental health issues often drop out of college or university but may
return at a later date to resume their coursework. Studies that track the frequency
of dropout and/or the reasons behind the dropouts have begun to appear in the
literature.
In a qualitative study of 24 students, Weiner and Weiner (1997) reported that
students withdraw from college because of the severity of their illness, regardless of
the provision of appropriate educational accommodations. Completing tests, writ-
ing papers, keeping up with class work, financial constraints, meeting new people,
crowds, large class sizes, and little involvement with faculty all contributed to the
decision to withdraw. Factors that contributed to staying in school included mean-
ingful and consistent involvement with the mental health system, assistance with
admission and readmission, reduced course load, access to a peer support group,
having an academic advisor and personal counselor, financial aid, campus orienta-
tion, and learning skills workshops.
In another qualitative study of 35 students, Megivern, Pellerito, and Mowbray
(2003) reported that problems related to completion were most frequently mental
health issues (85%), academics (60%), and finances (51%). Twenty percent said
that psychiatric symptoms were potentially problematic, but that environmental
supports (e.g., positive teachers, mental health treatment, or a college study group)
prevented symptoms from actually interfering with academics. The most frequently
cited reason for leaving college was psychiatric symptoms (43%). Nearly two-thirds
of this sample enrolled in college at least three times and intended to continue.
There was also a statistical trend toward those who utilized mental health services
during college completing more semesters than those who did not use services.
Some research has examined predictors of college completion. Unger, Pardee,
and Schafer (2002) found that having one’s own transportation and a relatively
low number of psychiatric hospitalizations were predictors of successful comple-
tion, whereas psychiatric diagnosis was not. Collins, Mowbray, and Bybee (2003)
found that productive activity (engaging in education, employment, or training) at
baseline, marital status, financial resources, and social supports were factors related
to educational achievement. Mental illness (diagnosis, symptoms, and length of ill-
ness) was not related to educational achievement.
Smith-Osborne (2005) reviewed nine studies about supported education
conducted between 1980 and 2004. They found that the type and severity of dis-
order and the productive leave/reentry procedure of the educational institution
were the strongest predictors of completing students’ education. Participation
296 Transformative Change of Social Conditions

in a supported education program and the use of on-campus mental health ser-
vices upon reentry to college approached statistical significance for maintaining
enrollment.
A University of Minnesota research team conducted 39 focus groups at 13 col-
leges and universities across the United States with 282 participants (Blacklock,
Benson, & Johnson, 2003). The results identified the following barriers to full col-
lege participation: (a) stigma, both internal and external; (b) managing the complex
nature of the psychiatric illness as a student; (c) limited student resources, includ-
ing adequate insurance and the necessity to work; (d) limited access to information
about campus resources and their own illness; and (e) organizational and institu-
tional barriers including lack of service coordination, professors’ teaching style, and
safety and classroom management issues.
From the students’ perspective, the barriers to successful college completion
are twofold. First, on the institutional side, current policies may still impede stu-
dent success. Most predominant are those policies that dictate withdrawal based
on behavior that indicates a mental illness, from suicide gestures or attempts and
disruption in dorms or on campus, to failure to meet the academic requirements
for other than academic reasons. On the personal side, students struggle to manage
their symptoms, and many still endure some elements of internal stigma. Some find
taking courses and keeping up with classloads very stressful and anxiety-provoking.
Students also feel economic pressure, either from managing their financial aid or
from other financial issues. Working with unsympathetic instructors and adminis-
trators and transportation issues are also problems. On the positive side, students
find that assistance from mental health providers or college staff has a positive influ-
ence on meeting their education goals.

Supported Education
Supported education programs strive to address the needs of students with mental
health issues and the barriers that they face to completing college or university.

Definition and Values

Supported education is defined as helping people with serious mental illness begin
or return to postsecondary education so that they may receive the education and
training they need to promote their recovery and to become gainfully employed in
the career of their choice. The beginnings of ecological and transformational change
are articulated in this mission and the following program values.

• Availability and accessibility: The program/services are publicized and delivered

to all who express an interest in returning to school.
 Sup por ted Education a s Trans for mative Chang e 297

• Self-determination: Participants retain the fullest possible control over their own
lives. They set their goals and participate fully in determining the criteria for suc-
cess and evaluating progress toward meeting their goals.
• Individualization: Services are tailored to meet the unique and changing needs of
each person.
• Support services: Support services that the student perceives to be supportive and
helpful are provided for as long as they are needed.
• Flexibility: Services are evaluated on an ongoing basis so that they can be revised,
as needed, to keep them responsive to student needs.
• Coordination: The resources of the mental health setting, the educational setting,
and the resources in the community are brought together to work for the benefit
of the participants.
• Hope: Participants are treated as developing persons capable of growth and posi-
tive change.

Outcome Research
Over time, evidence has begun to accumulate demonstrating the effectiveness of
supported education programs in achieving positive outcomes. In this section, the
findings of some of these outcome studies are highlighted. Hoffman and Mastrianni
(1993) investigated the efficacy of supported education in a matched, nonrandom-
ized study design by comparing treatment outcomes in two young adult inpatient
settings: one a specialized inpatient supported education service, the other a more
traditional approach to inpatient treatment. The results were reported in percent-
ages and were not tested for statistical significance. The descriptive results showed
that patients participating in a supported education service sustained stronger stu-
dent identities, returned to college at higher rates (69% vs. 47%), maintained higher
academic aspirations, and reported greater ease in the transition to more normative
settings following hospitalization.
Cook and Solomon (1993) conducted a pre/post study that described success-
ful outcomes for clients who participated in the Thresholds Community Scholars
Program. The program provided remedial coursework in math, reading, and com-
puter skills. Students (n = 125) completed an average of 3.6 classes per semester.
Ten students received degrees, ranging from BA degrees to an MA degree. Two oth-
ers completed training programs. Although the length of time for participation in
the study was not described, the three-year follow-up reported substantial employ-
ment gains reflected in the number of clients who were working on their own in
independent employment and significantly higher levels of self-esteem and coping
mastery, but not increased levels of anxiety.
An evaluation of outcomes of the previously mentioned Boston program (Unger
et al., 1991) determined that 42% of the total sample (n = 52) were competitively
employed or enrolled in an education program at the completion of the program,
298 Transformative Change of Social Conditions

compared with 19% before the intervention, a statistically significant difference.

Decreased rates of hospitalization and increased self-esteem were also reported
(Unger et al., 1991). The gains were maintained over time, as determined through
a later follow-up five to nine years after the intervention (n = 42; Ellison, Danley,
Bromberg, & Palmer-Erbs, 1999).
In the Michigan Supported Education Program (Collins, Bybee,  & Mowbray,
1998), students (n  =  397) were randomly assigned to three groups:  classroom,
group, and control. The classroom and group participants had meetings twice
weekly for 2.5 hours for two 14-week sessions (two semesters) that helped them
develop an educational or vocational plan, access supports and resources to achieve
the plan, and manage their psychiatric symptoms. Outcomes were reported at the
end of the first semester and the end of the second semester. There were signifi-
cant differences between the groups on satisfaction, enjoyment, and self-reported
learning, with those in the classroom and group conditions scoring higher than
those in the individual condition, but only the classroom participants scored sig-
nificantly higher on the measures of empowerment and school efficacy. After two
semesters, the percentage of those involved in college or vocational education more
than doubled between baseline (10%) and program completion (21%). Also, those
in the two intervention conditions differed significantly from those in the control
condition on whether they had taken university or vocational education classes
and were involved with rehabilitation services. Proportionally more of those inter-
ventions were involved in educational or rehabilitation activities. At 12-month
follow-up (n  =  262), participants in the classroom and group interventions had
significantly higher levels of university or vocational training involvement than did
participants in the control condition. The intervention groups also had significantly
higher scores on measures of quality of life and self-esteem and significantly lower
scores on social adjustment problems than did participants in the control condition
(Mowbray, Collins, & Bybee, 1999).
In a descriptive study, Unger, Pardee, and Shafer (2000) reported education
and employment outcomes for students who participated in supported educa-
tion programs and attended colleges at three sites. Study participants (n = 124)
attempted an average of 7.10 credits per semester and completed an average of
6.34 credits, a completion rate of 90%. They also maintained a grade point average
of 3.14 (on a 4-point scale), and their retention rate was similar to that of other
part-time students. During the course of the three-year study, 20% of the students
completed degrees or certificate programs. Employment for all students remained
at 42% throughout the study period. A major goal of the research was to determine
if supported education services led to work that reflected the consumers’ educa-
tion levels. Fifty percent of the students indicated that their job did fit their edu-
cation level, and 57% indicated that their education prepared them for their job.
There was an improvement in the job–education fit (work reflecting the education
level) over time.
 Sup por ted Education a s Trans for mative Chang e 299

The evidence for successful outcomes in supported education, completing edu-

cation goals and participating in competitive employment, relies primarily on pre/
post studies, program descriptions, and other descriptive quantitative or qualitative
studies. There have been no long-term research projects that use an experimental
design to determine GED, college completion, or subsequent employment for the
participants over time. However, the Substance Abuse and Mental Health Services
Administration (SAMHSA) of the US federal government has determined that sup-
ported education is a promising practice and has included “Supported Education, a
Promising Practice” in the SAMHSA Evidence-Based Practice KIT series.

Systemic Issues that Affect Postsecondary Institutions

From the college and university perspective, students with mental illness are attend-
ing college in increasing numbers; more students are also becoming ill while they
are attending school. Most institutions are ill-equipped to adapt to or introduce new
services for this population and are slow to make policy or administrative changes.
They often do not have the resources to address the students’ particular needs.
However, the students’ presence has become an emerging issue on campus and in
psychiatry, and Psychiatric News (2002) reported that mental illness was on the rise
on college campuses. The report indicated that the most prevalent student issues
were mood disorders, followed by general development issues and then anxiety dis-
orders. Eating disorders and substance abuse disorders were also prevalent.
In a study conducted by the American College Health Association, 14.8% of the
94,806 students between the ages of 18 to 25 at more than 100 college and univer-
sities said they had been diagnosed with depression at some time in their lives. Of
those, 36.6% were taking an antidepressant, and 9.3% had considered suicide some
time during the last school year (Psychiatric News, 2009). In another study reported
in Psychiatric News, (2009), it was found that about 20% of the college students in
their study met the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV)
criteria for an alcohol use disorder. An earlier study (Furr et al., 2001) reported that
53% of their sample reported having depression, and 9% reported that they had
considered committing suicide.
Guthman and Locin (2010) found that 96% of the students who were seek-
ing treatment at a college counseling center met the criteria for at least one mental
disorder, and 24% reported using psychiatric medications. Hunt, Eisenberg, and
Kilbourne (2010) reported that five diagnoses were positively and significantly
related to failure to graduate from college: bipolar disorder, marijuana use disorder,
amphetamine use disorder, and cocaine use disorder. They concluded that “psychi-
atric factors play a significant role in college academic performance and the benefits
of prevention, detection, and treatment of psychiatric illness may therefore include
higher college graduation rates” (Hunt et al., p. 399).
300 Transformative Change of Social Conditions

Although many colleges and university health systems are overburdened and
ill-equipped to manage psychiatric issues, Bender (2007) reported that eight col-
leges were collaborating to improve care for their students with major depression.
College health center staff began screening students for depression, and, if a student
was identified as having major depression, he or she was referred to the college-
counseling center.
In 2005, SAMHSA awarded 22 federal grants in the United States to boost
college mental health services (American Psychological Association, 2005). The
grants were to be used to (a) develop campus educational seminars on such topics
as suicide prevention, depression, and substance abuse; (b) create campus net-
works of student services that can identify, assess, and treat mental and behavioral
health problems; and (c)  prepare information materials for students and their
families that address warning signs of suicide, depression, and substance abuse
and other materials that identify appropriate responses for professionals work-
ing with distressed students. Another form of service delivered by college mental
health professionals included having staff liaisons in residence halls that also pro-
vide informational programs for students, staff, and faculty and multimedia infor-
mation on mental health issues to incoming college freshman (Arehart-Treichel,
2002a; 2002b). The August 21, 2009, issue of Psychiatric News reported that
slightly more than half of the US colleges or universities employed a psychiatrist.
Most are only working part-time, so students may not get psychiatric help when
they need it.
The college or university is not a treatment setting, and an educational insti-
tution has to educate all of its students. Resources are increasingly limited, and
although special populations must be accommodated, the law limits what the
schools must provide. Because educational institutions have neither the mandate
nor the resources to provide the additional services that most students with a men-
tal illness need, there is often a vacuum into which the mental health community
and community psychologists can step.
The mental health community has a natural role to provide counseling and sup-
port, medication, symptom and resource management, skill-based classes, and peer
support. Community psychologists can assist at both micro- and macrolevels. They
can bring their unique perspective to the assessment, counseling, and support role
while working in partnership with the mental health community and the on-cam-
pus disability and counseling services. At the macrolevel, they can assist in policy
development, personnel training, and development of innovative programs. By
expanding their roles and reallocating their resources, both professions can begin
to fill this gap.
Students who identify themselves as psychiatrically disabled now constitute
one of the largest groups of students on campus requesting accommodations.
Supported education has become one of the most desired services requested by
consumers from the mental health system. To date, however, supported education
 Sup por ted Education a s Trans for mative Chang e 301

is not a standard practice by most mental health providers, in spite of the progress
that has been made.

The Need for a New Paradigm in Community Mental

Health to Promote Supported Education
One of the major goals of supported education is to help students become fully inte-
grated into the mainstream student body. Because the level of services often neces-
sary for students to be successful on campus is not usually available on campus, a
new paradigm for mental health programs is needed.
Services that set people with mental illness apart from other students are not
desirable. With this in mind, three models of supported education programs have
developed over time. The first model was a self-contained classroom in which
students received initial training either in a separate classroom on campus or in a
classroom either in a mental health center or sponsored by a mental health center.
Students were then prepared to enroll in regular college classes. A second kind of
service was located on site, at the college campus. Mental health staff worked with
the students on that campus, providing them with support while they were attend-
ing college classes. A third kind of program provided mobile support, with mental
health staff working out of the mental health program and traveling to the different
schools that students were attending (Unger, 1990). At present, peer programs have
also begun to provide supported education services (Café TA Center, 2011).
To date, there has been no research or evaluation to determine which model
works most effectively. The chosen model to be implemented has depended on
the philosophy, culture, and resources of each site. A descriptive study (Unger &
Pardee, 2002)  of a three-site project found no differences in student outcomes
between sites. The three sites for the supported education programs were located at
a community college in the student-counseling center that used the on-site model
with both college and mental health staff, and a mental health center and a club-
house that both used the mobile support model. Each demonstrated the values and
practices defined previously in this chapter.
Unfortunately, supported education programs often compete for resources with
other programs, most notably supported employment programs. These programs
can be combined administratively to expand career development opportunities
for each participant. As they enter the agency or have their cases reviewed biannu-
ally, each person can be encouraged to articulate education and/or employment
goals. Many may move between program components and gain both career training
through their education program and work experience through their jobs. Because
of the knowledge and expertise required, each section of the program would require
its own staff, an education specialist(s), and an employment specialist(s). Both are
necessary to help clients become successful students and workers.
302 Transformative Change of Social Conditions

Supports Needed for Transformative Change

For supported education to become an integral part of CMH services, each stake-
holder group—students, educational institutions, and mental health programs—
has specific support needs.
Students require an educational environment that acknowledges their special
capabilities and support and resource needs. Goal setting, assistance with financial
aid and registration, money and other resource management, stress and symptom
management, transportation issues, study skills, and medication management are
some of the kinds of help they may require. Above all, most students require per-
sonal support and coaching from an educational specialist who helps them develop
and meet their education goals. Therapy, counseling, and medications can be pro-
vided at a mental health agency or on campus by qualified counselors, psycholo-
gists, and psychiatrists.
Colleges and universities need to re-evaluate those policies that make it dif-
ficult for students with mental health issues to complete their studies. Financial
aid and dropout or leave policies could be adjusted to be more favorable to the
special needs of these students. Staff training and education are needed to reduce
the stigma around mental illness and to help staff understand the nature of mental
illness and how it might affect their students on campus. Additional resources are
needed to fully staff college disability and counseling services. Because the funding
is not often readily available, collaboration with local mental health agencies can
provide supported education services for students, as well as support and educa-
tion for staff.
Resources are also an issue for mental health agencies. Changing the ecology of
their programs requires a paradigm shift that focuses on community integration for
their consumers. Services should include, among others, supported education and
supported employment. The biggest obstacle to the implementation of this para-
digm shift from “serving clients” to promoting community membership is the incli-
nation to emphasize interventions that address personal and crisis situations in the
moment and in the abstract. As clients experience their own capabilities by working
and going to school, the personal and crisis issues become problems to be solved
in relation to a specific goal or environment. Therapy becomes goal-oriented and
time-limited. The purpose of all of these multilevel interventions is to collaborate
with consumers so that they become effective students, workers, friends, and family
members.

Forming Community Coalitions

One of the most effective ways to facilitate transformational change is to bring
providers and consumers together in a community coalition (Foster-Fishman,
Berkowitz, Lounsbury, Jacobson, & Allen, 2001). Key stakeholders from consumer,
 Sup por ted Education a s Trans for mative Chang e 303

peer support, and parent groups, as well as from mental health, education, employ-
ment, housing, and other community resources need to meet together to discuss
transformational philosophy and policy and implementation issues. Such coalitions
could provide a venue to share visions and values, as well as to offer three other
important functions.
First, and foremost, a coalition can give consumers an equal voice, a way by
which they can fully express their points of view, articulate their needs, and describe
how the needs might be best served. Second, it gives all participants the opportu-
nity to see their programs and their individual work in a larger context. Coalitions
can expand the work of stakeholders, including consumers, by establishing a col-
lective support base and by dissolving their feelings of working in isolation. Third,
coalitions provide a forum in which to share perspectives and strategies to change
the ecology of the community to bring about transformational change. Forums can
be used to discuss individual program policies and procedures, as well as to work
out collaborative strategies for working together, so that the impetus for transfor-
mational change rests with programs and institutions, rather than with consumers.
With strong consumer participation, all discussions can return to the goal of full
community integration.

Conclusion
In the past 50 years, patients in psychiatric hospitals have moved into the commu-
nity to become clients in day treatment programs. Gradually, as our view of mental
illness evolved from an illness to a rehabilitation issue, people with mental illness
became consumers of services. Now it is time for us to fully recognize them as our
brothers and sisters, parents, partners, and friends and to assist them maintaining
these roles. Early detection, whether in grade school or on the college campus, is
critical and must become the norm. The stigma that surrounds a mental illness can
only be dissolved as we see ourselves and others as human beings, each with the
opportunity to fully develop, not only our ability to contribute through meaningful
work, but our humanity as well.
The purpose of a mature society is to assure that each of its members can fully
meet his/her basic needs and develop his/her individual and unique potential so
that he/she can contribute to the greater good. In the past, much of the responsibil-
ity for meeting these goals fell to the individual. As society takes on the responsibil-
ity of each of it citizens’ well-being, institutions must step up to do their part. This
means the primary focus is not on what is best for the program or for the institu-
tion’s survival, but what’s best for the people they are there to serve. That transfor-
mational change involves a paradigm shift that will ultimately elevate both providers
and participants.
304 Transformative Change of Social Conditions

References
American Psychological Association. (2005). In brief, SAMHSA awards 22 federal grants to boost
college mental health services. Monitor on Psychology, 36(11), 15.
Anthony, W. (1979). Principles of psychiatric rehabilitation. Baltimore, MD: University Park Press.
Arehart-Treichel, J. (2002a). Colleges use aggressive outreach to prevent, identify MH problems.
Psychiatric News, 37(6), 6–38.
Arehart-Treichel, J. (2002b). Mental illness on rise on college campuses. Psychiatric News, 37(6),
6–38.
Bell, R. (1970). Practical applications of psychodrama: Systematic role playing teaches social skills.
Hospital and Community Psychiatry, 21, 189–191.
Blacklock, B., Benson, B., & Johnson, D. ( June, 2003). Needs assessment project: Exploring barriers
and opportunities for college students with disabilities. Executive summary. St. Paul: University
of Minnesota.
Bender, E. (2007). Eight colleges collaborate to improve depression care. Psychiatric News, 42(7), 12.
Bond, G., Becker, D., & Becker, D. (1997). An update on supported employment for people with
severe mental illness. Psychiatric Rehabilitation Journal, 48, 335–346.
Café TA Center. (2011). Retrieved from http://cafetacenter.net/wp-content/uploads/2011/05/
SUPPORTED-EDUCATION-white-paper-5-27-11.pdf
Coche, E., & Flick, A. (1975). Problem solving training groups for hospitalized psychiatric patients.
Journal of Psychology, 91, 19–29.
Collins, M., Bybee, D., & Mowbray, C. (1998). Effectiveness of supported education for individuals
with psychiatric disabilities: Results from an experimental study. Community Mental Health
Journal, 34(6), 595–613.
Collins, M., Mowbray, C., & Bybee, D. (2003). Characteristics predicting successful outcomes in
participants with severe mental illness in supported education. Psychiatric Services, 51(6),
774–780.
Cook, J.,  & Solomon, M. (1993). The community scholars program:  An outcome study of sup-
ported education for students with severe mental illness. Psychosocial Rehabilitation Journal,
17(1), 83–97.
Corrigan, P., & McCracken, S. (2005). Place first, then train: An alternative to the medical model of
psychiatric rehabilitation. Social Work, 50(1), 31–39.
Ellison, M., Danley, K., Bromberg, I.,  & Palmer-Erbs, V. (1999). Longitudinal outcomes of
young adults who participated in a psychiatric vocational rehabilitation program. Psychiatric
Rehabilitation Journal, 22, 337–341.
Foster-Fishman, P.  G., Berkowitz, S.  L., Lounsbury, D.  W., Jacobson, S.,  & Allen, N.  A. (2001).
Building collaborative capacity in community coalitions. American Journal of Community
Psychology, 29, 741–761.
Furr, S., Westefeld, J., McConnell, F., & Jenkins, J. (2001). Suicide and depression among college
students: A decade later. Professional Psychology: Research and Practice, 32(1), 97–100.
Guthman J., & Locin, L. (2010, August 10). Increase in severity of mental illness among clinical col-
lege students: A 12 year comparison comparison. Paper presented at the American Psychological
Association Conference, San Diego, CA.
Heffner, F., & Gill, R. (1981). The role of community based service providers in the rehabilitation of dein-
stitutionalized psychiatric patients: Does education belong in the therapeutic process? Unpublished
manuscript.
Hinterkopf, E.,  & Brunswick, L. (1975). Teaching therapeutic skills to mental patients.
Psychotherapy: Theory, Research and Practice, 12, 8–12.
Hoffman, F., & Mastrianni, X. (1993). The role of supported education in the inpatient treatment
of young adults: A two-site comparison. Psychosocial Rehabilitation Journal, 17(1), 109–119.
Hunt, J., Eisenberg, D., & Kilbourne, A. (2010). Consequences of receipt of a psychiatric diagnosis
for completion of college. Psychiatric Services, 61(4), 399–404.
 Sup por ted Education a s Trans for mative Chang e 305

Levine, M. (1981). The history and politics of community mental health. New York: Oxford University
Press.
Malamud, T. (1986). Community adjustment:  Evaluation of the clubhouse model for psy-
chiatric rehabilitation. Rehabilitation Brief:  Bringing Research into Effective Focus, 9(2),
ISBN: 0732-2623.
Megivern, D., Pellerito, S., & Mowbray, C. (2003). Barriers to higher education for individuals with
psychiatric disabilities. Psychiatric Rehabilitation Journal, 26(3), 217–231.
Mowbray, C. T., Collins, M., & Bybee, D. (1999). Supported education for individuals with psy-
chiatric disabilities: Long-term outcomes from an experimental study. Social Work Research,
23(2), 89–100.
Pavela, G. (1982 1982–1983). Therapeutic paternalism and the misuse of mandatory psychiatric
withdrawals on campus. Journal of College and University Law, 6, 101–141.
Pavela, G. (1985). The dismissal of students with mental disorders: Legal issues, policy considerations
and alternative responses. Ashville, NC: The Higher Education Administration Series, College
Administration Publications.
Psychiatric News. (2002, March 15). Mental illness on rise on college campuses. 37, 66–38.
Psychiatric News. (2009, August 21). Educators addressing need for college psychiatrists. 44, 16–20.
Scoles, P.,  & Fine, E. (1979). Aftercare and rehabilitation in a community mental health center.
Social Work, 16, 75–82.
Smith-Osborne, A. (2005). Antecedents to postsecondary educational attainment for individuals
with psychiatric disorders: A meta-analysis. Best Practices in Mental Health, 1(1), 15–30.
Stein, L., Test, M., & Marx, A. (1975). Alternative to the hospital: A controlled study. American
Journal of Psychiatry, 132, 517–522.
Spaniol, L., Jung, H., Zipple, A.,  & Fitzgerald, S. (1985). Needs and coping strengths. Boston,
MA: Center for Psychiatric Rehabilitation, Boston University.
Unger, K. (1987). Rehabilitation through education: A university-based program for young adults
with psychiatric disabilities. Psychosocial Rehabilitation Journal, 10(3), 35–49.
Unger, K. (1990). Supported post secondary education for people with mental illness. American
Rehabilitation, Summer, 10–14.
Unger, K. (1998). Handbook on supported education:  Providing services to students with psychiatric
disabilities. Baltimore, MD: Paul H. Brooks.
Unger, K. (2004). A history of mental health services in Oregon from 1945 to 2000. Salem, OR: Mental
Health and Additions Services, Department of Human Services.
Unger, K., Anthony, A., Sciarappa, K.,  & Rogers, S. (1991). Development and evaluation of a
supported education program for young adults with long-term mental illness. Hospital and
Community Psychiatry, 42, 838–842.
Unger, K., & Pardee, R. (2002). Outcomes measures across program sites for postsecondary sup-
ported education programs. Psychiatric Rehabilitation Journal, 25(2), 299–303.
Unger, K., Pardee, R., & Shafer, M. (2002). Outcomes of postsecondary supported education pro-
grams for people with psychiatric disabilities. Journal of Vocational Rehabilitation, 14, 195–199.
Wehman, P. (1996). Supported employment from 1986-1993:  A  national program that works.
Focus on Autism and Other Developmental Disabilities, 11, 235–242.
Weinman, B., Sanders, R., Kleiner, R.,  & Wilson, S. (1970). Community based treatment of the
chronic psychotic. Community Mental Health Journal, 6, 12–21.
Weiner, E., & Wiener, J. (1997). University students with psychiatric illness: Factors involved in
the decision to withdraw from their studies. Psychiatric Rehabilitation Journal, 27(4), 88–92.

Resources
Supported Education: A Promising Practice (in the SAMHSA Evidence-Based Practices KIT series).
Rockville, MD: Center for Mental Health Services.
306 Transformative Change of Social Conditions

Substance Abuse and Mental Health Services Administration (SAMHSA), US Department of Health
and Human Services. This publication may be downloaded at the website below or ordered
by calling SAMHSA’s Health Information Network at 1-877-SAMHSA-7 (1-877-726-4727)
(English and Español). http://store.samhsa.gov/facet/Professional-Research-Topics/term/
Evidence-Based-Practices?filterToAdd=Kit.
Mowbray, C. T., Brown, K. S., Furling-Norman, K., & Sullivan-Soydan, A. (Eds.). (2002). Supported
education and psychiatric rehabilitation:  Models and methods. Linthicum, MD:  International
Association of Psychosocial Rehabilitation Services.
Unger, K. (1998). Handbook on supported education:  Providing services to students with psychiatric
disabilities. Baltimore: Paul H. Brooks.
 PA RT S E V E N

TRANSFORMATIVE POLICY CHANGE

 15

Beginning to Take Control

Ontario’s Consumer/Survivor Development Initiative

john trainor and david reville

This chapter looks at the challenge of transformative change through the lens of a
particular story—the development of a provincewide network of consumer/survi-
vor organizations in Ontario, Canada. By looking at the context of the time and the
way in which the Consumer/Survivor Development Initiative, or the CSDI as it was
then known, was imagined and realized, we hope to shed light on the aspect of trans-
formative change that lies in providing consumers/survivors with the resources to
run their own organizations.
The CSDI was developed in 1991. Since that time, there has been extensive
research into both the types and the efficacy of consumer/survivor organizations,
particularly in the United States (Goldstrom et  al., 2006). There has been much
less attention paid to the role of government in supporting these groups and, in
particular, to how government can help, or perhaps hinder, their development. The
CSDI was a government-led and -funded initiative, and it can be seen as an attempt
to navigate the territory created between the government and groups that, in many
cases, strongly opposed its actions and policies in mental health. We hope that this
case study will illuminate the issue of the role of government, and this role will be a
theme throughout the chapter.
In 1991, the idea of consumer/survivor-run organizations was not entirely new,
but it was nascent and, in the case of most governments, was not seen to be a part
of the mental health system. The CSDI tried to change this and was one of the early
examples of building a system of consumer/survivor-run programs. A survey car-
ried out by the CSDI in Canada and the United States in 1991 indicated that, by the
end of its first year, it was one of the most comprehensive programs of consumer/
survivor initiatives in North America.

309
310 Transformative Policy Change

As authors, we each have a history with the CSDI and unique positions from
which we view it. One of us ( JT) worked in a large psychiatric hospital and was
seconded by the Ontario Ministry of Health in 1991 to lead the new initiative.
Other involvements at the time included chairing a national-level committee of
the Canadian Mental Health Association (CMHA) and focusing specifically on
a new policy framework that strongly endorsed consumer/survivor involvement
in all aspects of the mental health system. The seconded role with the Ministry of
Health included responsibility for all aspects of the CSDI and recruiting and man-
aging a mixed team of consumers/survivors and non-consumers/survivors to act
on behalf of the Ministry in implementing the program. The second-listed author
(DR) worked as special advisor to the premier of Ontario. In the mid-1980s, he
also helped develop CMHA’s policy framework. A  consumer/survivor himself,
he had been a member of On Our Own, one of Canada’s early consumer/survivor
organizations.
Our two perspectives as authors have naturally shaped our views of the CSDI
and its formation and early development. We have tried to make this a virtue by
relating the story in part through our experience, one as a staff member in the men-
tal health system and one as a politician, consumer/survivor, and advocate. This
seems significant because making consumer/survivor initiatives a fundamental part
of any mental health system will always be, to an important degree, dependent on
these perspectives coming together.

The Context
The CSDI is a story about social movements, service providers, and public policy.
To anchor the story, we pick two points in time:  August 1977 and September
1984. It was in August 1977 that two Ontario consumers/survivors, Don Weitz
and Alf Jackson, founded what was to become On Our Own, the first consumer/
survivor-run organization in Ontario; and it was in September 1984 that the
CMHA released the first policy document in Canada that explicitly recognized
the role of consumers/survivors in the system and the importance of self-help.
The first organization formed by Canadian ex-psychiatric patients was the
Vancouver Mental Patients Association, which was established in 1971. Don
Weitz visited this organization in 1973 and returned to Toronto determined to
start a similar group. It took him four years to do it. The CMHA supported the
notion of self-help that was central to the consumer/survivor/ex-patient (c/s/x)
movement, included it in the policy document it had developed, and then sold
the package to government.
The growth of the movement in Ontario was slow. In 1988, there were just four
consumer/survivor1 initiatives—On Our Own, the Ontario Coalition to Stop
Electroshock, and two consumer/survivor businesses: AWAY Express Couriers in
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 311

Toronto and Abel Enterprises in Simcoe. On Our Own supported a business called
the Mad Market and an antipsychiatry magazine called Phoenix Rising: The Voice of
the Psychiatrized. In 1989, “Our Turn,” a conference in Montréal, brought together
consumers/survivors from across Canada for the first time. The energy gener-
ated by that conference started a wave of organizing. In Ontario, that energy pro-
duced the Ontario Psychiatric Survivors Alliance (OPSA), the first province-wide
consumer/survivor initiative. Later that same year, a group working out of the
Parkdale Activity Recreation Centre in Toronto started Fresh Start Cleaning and
Maintenance, another consumer/survivor business.
These developments were happening in Canada’s largest province, which, in
1991, had a population of about 11  million. Deinstitutionalization had begun in
1965, and by 1972, the fundamental approach of closing beds and increasing out-
patient care was established (Simmons, 1990). More than 70% of inpatient beds
were closed, and, by 1980, the full extent of the challenges people faced in the com-
munity was becoming clear. The classic analysis of deinstitutionalization outlined
by Leona Bachrach (2007) applied to Ontario—beds had been shut and outpatient
care provided, but the reality of issues such as housing, income, and other basics of
community life were neglected. Planners had underestimated the range of services
offered by the old asylums. Although the asylums did it badly, they had housed and
fed their patients and offered some kind of activities. With bed closures, people with
mental illness were now visible on the street, bringing a very obvious end to the era
of asylum care and social hygiene. The issue of “mental patients in the streets” took
over from the “snake pit” asylums, and the Ontario Ministry of Health decided to
take action.
Up until the late 1970s, the Ontario government, through its Ministry of
Health, had done two things to deal with the problems of deinstitutionalization.
The first was to establish psychiatric units in general hospitals, and the second was
to fund a system of psychiatric board and care homes (Simmons, 1990). These
measures proved to be inadequate, and a new funding program was put in place.
Known as community mental health (CMH) funding, it provided long-term
operating grants for programs that would improve the support available in areas
such as housing, social supports, and work. The initial recipients were mostly
general hospitals, with some small nongovernmental organizations (NGOs) also
included. General hospitals may seem an odd place to invest community funds,
but their prominence in the early programming reveals an important stage in
the evolution that led to the CSDI. Like most jurisdictions at the time, Ontario
was struggling with the transition to a community-based system. Although the
movement of patients from asylums to the community was happening rapidly,
the movement of bureaucratic thinking away from a hospital-centered focus was
moving more slowly.
The thinking behind the board and care homes, known as Homes for Special
Care, gives a second example of the approach that characterized Ontario policy
312 Transformative Policy Change

during deinstitutionalization. These homes were legislated and regulated in a cus-

todial fashion, meaning that an institutional, one-size-fits-all approach was used.
Many of the homes were large, some with more than 40 residents. Rooms were
shared, and the daily routines were regimented. Talbott (1979) has called this pro-
cess “transinstitutionalization” to emphasize the lack of imagination that underlay
it, and Murphy (1972) called these homes the “new back wards,” referring to the
designation in asylums of long-stay wards for the most disabled. For our purposes,
the important point is that in the early phases of deinstitutionalization, policy
makers had a view of people with mental illness as helpless and in need of super-
vised care.
Outside of government and hospital settings, things were quite different.
Consumers/survivors had been developing a variety of small groups and orga-
nizations, and NGOs such as the CMHA were advocating for more care in the
community (O’Hagan, Cyr, McKnee, & Priest, 2010). The 10 years prior to the
funding of the CSDI in 1991 can be seen in hindsight as a period when govern-
ment and these community groups formed tighter bonds and began to work
together. The pattern of community funding began to shift to NGOs, and new
policy ideas came to the fore. Prominent among these was new thinking about
consumers/survivors.
If we think of asylums and Homes for Special Care at one end of a continuum of
how people with mental illness are viewed, what is at the other end? This territory
“on the other end” of the continuum was being mapped out in Ontario in the 1980s.
Most of the debate can be seen as professional and government staff coming to grips
with messages that consumer/survivor advocates had been sending for some time.
Here, the language was not just about the reform of treatment methods or locations;
instead, it was the language of liberation coming from people who were marginal-
ized and victimized by wide-ranging prejudice (Chamberlin, 1990). The discourse
had more in common with social movements such as those promoting women’s and
civil rights than with service system reform. The messages were clear: consumers/
survivors wanted the tools and the freedom to live full lives in the community as
citizens. The emphasis was on capability, not disability.
Other developments drove the agenda forward. In 1980, a series of high-profile
inquests into the deaths of patients at the Queen St. Mental Health Centre in
Toronto, combined with outrage in the west-end Toronto community of Parkdale
over the “dumping” of discharged mental patients, prompted the government to
bring in a system for psychiatric patient advocacy and new community funding.
In 1986, the Mental Health Act was being reviewed in the Ontario Legislature
because it did not meet the new tests set out in the Canadian Charter of Rights and
Freedoms passed in 1982. One of us (DR) was a member of the legislature and pres-
sured the government to address the issue of CMH. In response, the then Liberal
government not only amended the Mental Health Act, but also established a task
force to develop a plan for CMH. The task force report2 had as one of its suggestions
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 313

the funding of self-help. Unfortunately, the government was defeated before it could
implement the recommendations of the report.
New roles for consumers/survivors had also begun to take shape in the 1980s.
The idea of involvement on governing bodies took root, and there were examples
of agency boards of directors that had recruited consumers/survivors. Involvement
could also be seen in policy, particularly in a series of documents issued by the
national office of the CMHA (mentioned in the opening section of this chapter).
Prominent among these was A Framework for Support for People with Severe Mental
Disabilities (Trainor  & Church, 1984), which argued that people who use men-
tal health services can play roles beyond that of “patient.” The idea of contribut-
ing to policies and to the governance of organizations had found a very small but
important place in the discourse on mental health, and, for the first time, the role
of self-help groups in supporting people with mental health issues was highlighted.
Zinman et  al. (2009) report similar developments in the United States, noting
that the 1980s was a transitional time during which the more radical positions of
antipsychiatry were left behind and “we began the process of re-entering the world
that had so hurt us” (Zinman et al., p. 14). Goldstrom et al. (2006) echo this and
state that “mutual support groups and consumer/survivor-operated services, have
entered into a phase of partnership and collaboration” (p. 100).
These positive developments received an unexpected boost on the political
front in 1990. The New Democratic Party (NDP), a social democratic party with
a progressive agenda, won power in the provincial election in Ontario. The new
government brought forward an economic strategy designed to stimulate the econ-
omy. Each ministry had been invited to submit proposals. The Ministry of Health
included in its proposal $3.1 million earmarked for a provincial network of con-
sumer/survivor-run organizations. A proposal call was issued in 1991 for projects
run by consumers/survivors, and within three months 42 were selected for funding.

A Strategy for Transformation

There are many ways that consumer/survivor involvement can be framed and by
looking at these we can see where the CSDI fits. A number of authors have offered
schema for classifying the field, and the choices that policy makers and funders make
have important consequences for what emerges. Looking at the various roles that
have emerged, Davidson, Chinman, Kloos, Weingarten, Stayner, and Tebes (1999)
suggest three main categories: self-help, participation in programs run by peers, and
acting as staff in service agencies. Goldstrom et al. (2006) suggest three similar cat-
egories:  informal self-help, mental health self-help organizations, and consumer/
survivor-operated services. In these typologies, we see two basic roles emerging.
One is based on self-help or mutual aid, whereas the other is taking on a role in a
mainstream service agency or in a consumer/survivor-run service agency. In one
314 Transformative Policy Change

case, an individual connects with other people who are structurally equal and who
come together in a reciprocal relationship. In the other, there is a client on one hand
and a provider on the other. O’Hagan, Cyr, McKee, and Priest (2010) tease this
out further by suggesting four main structures in which we find consumer/survivor
involvement: (1) informal grassroots self-help groups run by volunteers, (2) inde-
pendent peer-run organizations/initiatives staffed and governed by consumer/
survivors, (3)  peer support programs within mainstream agencies, and (4)  peer
support workers employed or contracted by mainstream services. These catego-
ries are essentially a mapping of the territories where we find consumer/survivor
involvement and are a useful way of looking at the field and the kind of choices that
could have been made when the CSDI was developed.
The choices that actually were made, however, stemmed from a particular
analysis that the founders3 of the program developed. They believed that the goal
of the CSDI should be specifically transformational and that this transformation
should be on two levels. The first was individual—the CSDI was an attempt to cre-
ate organizations that allowed for a different kind of experience for consumers/
survivors—and the second was systemic. The creation of a network of consumer/
survivor-controlled organizations would bring a new dimension and power base to
the system and would change the dynamics and politics in the long term. We now
look at these areas in turn.
Drawing on the work of the CMHA, the CSDI was designed to counterbal-
ance what was then referred to as the “service paradigm.” The service paradigm is
a worldview that sees services, whether in the hospital or the community, as the
only model of action that is fully legitimate in helping people with mental illness.
It is based on various versions of one basic fact—the existence of service provid-
ers and service recipients. Debates rage within this paradigm about how to deliver
the best services, for example in the hospital or community, or delivered by con-
sumers/survivors or staff without lived experience, but not about whether some
kind of service is the answer. The CSDI was intended to challenge this view where
it was most strongly held—in government and the various mental health profes-
sions, but also by many consumers/survivors themselves. The founders of the
CSDI believed that other kinds of action, particularly mutual aid and self-help,
were of tremendous value. Without them, the capacity of consumers/survivors
to act on their own behalf and to help others is left untapped. Furthermore, the
founders believed that people working together could also tackle many other
issues. The importance of the distinction between receiving services as a patient
or client on one hand, and helping each other through self-help and acting collec-
tively on various system issues on the other, is of critical importance to the CSDI
as a case study. The funding of the CSDI was a way to build an enhanced system
that tapped new resources.
The second major goal of the CSDI, system reform, was conditioned in a sig-
nificant way by what had happened to consumers/survivors in the asylums and at
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 315

the hands of those psychiatrists who worked without any kind of guidance from
or respect for people’s experience. In Canada, there was the usual litany of abuses
in the asylums, but also the added horror of the experiments carried out by psy-
chiatrist Ewen Cameron in Montréal. These experiments, funded by the Central
Intelligence Agency of the United States have been well documented and resulted
in the destruction of the lives of many people with mental illness (Klein, 2007).
Added to this were incarceration, forced drugging, and lobotomies. The evidence
was clear that psychiatry was incapable of effective self-regulation and that the
structure of the mental health system had to include more effective checks and bal-
ances (Bluebird, 2007). The CSDI was an attempt to create balance in two ways.
The first was structural:  by creating a network of consumer/survivor-led organi-
zations, a new component of the mental health landscape would be established.
This structural presence would then translate into ongoing action, from self-help
to lobbying, that would change the everyday process of the mental health system.
Individual consumers/survivors and their organizations would provide a counter-
point to the vagaries of professional thinking.
If we recall the schema set out by O’Hagan et al. (2010), we can see that the
CSDI fits into their second category—independent peer-run organizations/ini-
tiatives staffed and governed by consumers/survivors—but with a restriction on
providing services. Campbell (2005) reviewed eight of these organizations in the
United States and found the two kinds of activity that characterized the CSDI—
personal support and system advocacy—to be present, and she referred to them as
“caring and emancipatory functions.”
This perspective had to be translated into the real context of Ontario in 1991.
The good news was that, from the 1960s onward, the provincial mental health
administration had slowly increased the breadth of its policy thinking. It had moved
from primarily funding large mental hospitals to funding community treatment
programs and, finally, to funding housing and other social supports. It had even
provided some grants to consumer/survivor organizations, but only in a one-off
manner.
The way in which government envisioned its role in helping people with mental
illness was crucial to the CSDI and warrants further comment. Traditionally, gov-
ernments have seen their role as funding a professionally run service system, and,
as we have seen in Ontario, this had grown in scope to include support services
such as housing. This expanded view was driven by necessity. Scull’s (2010) analy-
sis of deinstitutionalization argues that it was made possible by the emergence of
post-World War II social safety nets. These services allowed people with serious
mental illness to survive in the community, albeit in a marginal way. In Ontario, the
social safety net existed but proved to have too many holes to allow for adequate
supports (Simmons, 1990). In effect, the Ministry of Health got into the social sup-
port business by funding housing and other programs. This was a positive develop-
ment, but it did not include consumer/survivor-run initiatives.
316 Transformative Policy Change

The CSDI was designed to shift the perspective of policy makers yet another
step forward. The goal was a network of consumer/survivor-run organizations that
would become as fundamental to the system as hospitals and CMH agencies. The
1991 funding commitment was an important step that showed an understanding on
the part of government that consumers/survivors had contributions to make and
that the service paradigm was not the only way to support people with mental ill-
ness. But would this, from the point of view of consumers/survivors, turn out to be
a pyrrhic victory? Would government funding itself, and the conditions that came
along with it, be a significant problem? This was a real concern in Ontario in 1991.
There was, however, a clear consensus to move forward with the strategy.

Implementation
The CSDI’s initial funding was short-term, and the program’s long-term viability
required the support of senior staff in the provincial health administration. To get
this support, the program would have to prove itself, and this would require the
right kind of information. To this end, a research initiative was built in from the
outset. The information presented here is drawn from this original study and from
a subsequent study carried out by Geoff Nelson and colleagues (Nelson, Ochocka,
Janzen, & Trainor, 2006a).
The two transformational goals of the CSDI—to create programs in which con-
sumers/survivors could act on their own behalf and help each other and to struc-
turally transform the system—had to be translated into the kinds of policies and
guidelines on which government funding initiatives are actually based. The basic
guidelines of the program were established for this purpose. These guidelines were
designed to address two issues: implementing the core goals of the program and
limiting the level of government control.

A Nonservice Approach
To ensure that self-help and other forms of collective action were the focus, the first
guideline stated that:

the CSDI supports projects and organizations which utilize the skills and
capacities of consumer/survivors to help themselves and advocate for
change. The CSDI does not fund traditional services. (Trainor, Shepherd,
Boydell, Leff, & Crawford, 1996)

This guideline was aimed squarely at two things: the service paradigm and the advo-
cacy role. If the new organizations were to explore nonservice models of action,
the tendency to default to service thinking had to be confronted. An early example
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 317

illustrates this. The members of one of the new consumer/survivor initiatives (CSI)
identified that their town had poor crisis services and that their members needed
more support. The initial plan was to have one of the CSI staff become a crisis worker,
but this would replicate the service model. Instead, the group members discussed
their needs and realized that, at any one time, most of them were not in crisis and
would be happy to help anyone who was. Instead of a service, the group set up a way
of communicating with each other to offer mutual support. Staff of the CSI did not do
crisis counseling; instead, they helped to coordinate the members’ collective action.
This guideline also clearly enshrined advocacy as a legitimate function of con-
sumer/survivor organizations. It was designed to legitimize the kinds of discussions
and debates that were seen as crucial to changing the tenor of the discourse in men-
tal health, and this came at a time when the voice of consumers/survivors was highly
marginalized. The guideline was evidence that government was now seeing its role
as creating the conditions that would foster more balance among the stakeholders.

Consumer/Survivor Initiative Independence

To ensure that the new organizations addressed the second goal of structural change
that would lead to system transformation, a further guideline stated that:

the CSDI supports independent consumer/survivor controlled projects

and organizations. (Trainor et al., 1996)

A rider to this allowed for the incubation of new groups within established host
agencies, but a time limit of one year was set for full independence. To a real extent,
this guideline was to protect the new organizations from what could be a predatory
system of community service agencies and to ensure their independence.

A Member-Driven Approach
Another guideline was aimed at the internal operation of the groups. As any stu-
dent of social movements knows, new organizations of marginalized people often
have charismatic leaders and are not always democratic in operation. The relevant
guideline read:

Projects funded through the CSDI must have a democratic, membership-

driven process in place. Projects must have a board of directors, steering
committee, or some other governing structure which is elected by and
reflects their membership. (Trainor et al., 1996)

These guidelines, and two others that covered regional and Francophone issues,
set the tone for the CSDI. They gave new groups a territory in which to operate
318 Transformative Policy Change

and helped shape the initiative. But perhaps the most important thing about the
guidelines is what they did not contain. There are no detailed requirements about
program operation or reporting, and there is room for advocacy in opposition to
both the treatment system and to government policies. The guidelines created the
broad framework for activities but did not determine the specifics of content. They
were a part of government policy, but simultaneously an attempt to limit the role
of government. They embody the attempt by government to fund organizations
without having the funding cripple their effectiveness and authenticity.
Launching a new government program also requires an operating structure, and
this was put in place. It was centered on a team based in Toronto, which we described
earlier as the founders, and included six members. Three were consumers/survivors
and three were from other backgrounds. This team reported to a director in the
Ministry of Health but was located offsite and funded in a way that allowed much
more latitude than regular Ministry programs.

The Consumer/Survivor Initiative Projects and Activities

The team led in setting the guidelines just quoted and in making funding decisions.
Within three months of operation, submissions had been reviewed and 42 proj-
ects selected for funding. After a one-year period, this was reduced to a group of 36
that consisted of seven cooperative businesses, one diagnostically focused group
(the Mood Disorders Association of Ontario), and 28 generic groups that offered
a range of activities determined by their members. The average membership was
90, and the groups were spread across the province and covered urban, rural, and
remote areas (Trainor et al., 1996).
It was assumed that the groups would be creative, and this proved to be the case.
In the three years following 1991, records were kept of what the groups were actu-
ally doing. Seven major areas were identified, and these are one measure of how the
CSDI was addressing its main goals. The goal of creating settings in which consum-
ers/survivors could use their skills and experience to help each other was reflected
in these activities. Note that most groups were doing multiple activities:

• 93% of the groups were offering self-help and mutual support.

• 83% were pursuing cultural activities such as arts-oriented newsletters and
poetry workshops.
• 80% were providing knowledge development and skills training in which mem-
bers shared skills with each other and produced material for other groups.4
• 37% of the groups were engaged in some form of economic development.

The second goal of the CSDI, system transformation, had two aspects. One,
mentioned earlier, was to permanently include consumer/survivor-controlled orga-
nizations in the mental health system. The second was to use this stable base as a
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 319

platform for sustained attempts to influence mainstream services. Among the activi-
ties carried out in these areas:

• 80% of the groups were doing advocacy, including demands for better services
and participation on regional and provincial planning bodies, and 70% were
doing in-reach activities with inpatient psychiatric settings.
• 73% were involved in public education, working with media and participating in
community events as guest speakers.
• 70% of groups were educating professionals, acting as faculty in professional
training, and hosting field placements.

The newly funded groups were in most cases inexperienced with organizational
management and program operation. The central team implemented a range of
strategies to address this. These included regional meetings, site visits, help with
organizational planning, annual provincial conferences, provision of written
resources, and use of external consultants. Each group also had a liaison staff from
the central team. Organizational viability was assessed by reviewing financial man-
agement, capacity for governance, membership development, and administrative
management. Information was collected for 30  months, and, across the system,
each area showed steady improvement (Trainor et al., 1996). Although these trends
were positive, there remained significant instability in many programs. Budgets
were small, averaging just under $100,000 ($143,000 in 2012 dollars), and this did
not allow groups to grow to a more stable size.
The question of who was using the CSDI groups was also explored. Obtaining diag-
nostic profiles was not seen as appropriate to the nature of consumer/survivor programs
and was not used, but it was important to have some information about members in
order to make the case for funding. The policy of the Ministry of Health at the time was
to focus resources on people with serious mental illness, and the sustainability of the
program was at stake if this could not be demonstrated. Nine representatives from the
funded organizations were part of a research committee, along with the central team,
and it was jointly decided to use inpatient experience as an indicator. In Ontario at the
time, the most seriously ill people were treated in a system of 10 psychiatric hospitals,
similar to state hospitals in the United States. A full 92% of respondents reported expe-
rience in these provincial hospitals, and 74% had experience in general hospital units,
demonstrating that people with serious mental illness were the majority of members.

Impacts
Transformational Impacts on Individuals
A variety of qualitative and quantitative, quasi-experimental strategies were under-
taken to explore the experience of membership (Trainor et  al., 1996; Nelson
320 Transformative Policy Change

et al., 2006b; Ochocka, Nelson, Janzen, & Trainor, 2006). The four things people
liked best were support and friendship, respectful and engaged staff, activities,
and empowerment (Trainor et  al., 1996). Focus group members emphasized
the two-part nature of the experience. They received support from the group,
and they were able to give support to others. They also defined the related ele-
ments of actualization in the group. As individuals, they were able to help each
other and the group, while there was also the chance to work collectively as part
of a team. Members also reported significant improvements in the following six
areas: self-confidence, being in control, day-to-day coping, having choices, contact
with other people, and involvement in the community (Trainor et al., 1996). In a
three-year follow-up study, significant improvements were found in continuously
active members in community integration, quality of life, and instrumental role
involvement, and symptom distress was found to be significantly lower than for
members who participated less frequently or nonmembers who did not participate
in CSIs at all (Nelson et al., 2006).

Making Consumer/Survivor Initiatives a Part

of the Mental Health System
At the policy level, success came relatively quickly. Through the direct influence of
the CSDI and the example of the new territory it had staked out, important changes
were made to mental health policy in Ontario. In June 1993, the province issued a
new policy direction. Putting People First: The Reform of Mental Health Services in
Ontario defined four elements as central to its 10-year strategy (Ontario Ministry of
Health, 1993). One of them was “supports planned and run by consumer/survivors
and families as alternatives to the formal mental health system” (Ontario Ministry
of Health, 1993). This development would have been unthinkable 10 years earlier,
and, as a result, the CSDI funding was continued.

Influencing the Mainstream Service System

The activities just listed show that CSIs were actively involved in trying to influ-
ence the service system. Nelson and colleagues found that system-level activities
remained prominent areas of action. Four main kinds of activity—public education,
political advocacy, community planning, and action research—were most promi-
nent ( Janzen, Nelson, Ochocka, & Trainor, 2006). “The qualitative data revealed a
number of perceived system-level outcomes related to these activities: (1) changes
in perceptions (changed perceptions of the public and mental health professionals
about mental health or mental illness, the lived experience of consumer/survivors,
the legitimacy of their opinions, and the perceived value of CSIs) and (2) concrete
changes (tangible changes in service delivery practice, service planning, public pol-
icy, or funding allocations)” ( Janzen et al., 2006, p. 285).
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 321

The central team and the CSIs supported the idea of significant representation
by consumers/survivors on the governing boards of mental health agencies, and, in
the late 1990s, the Ministry of Health issued a series of guidelines. These required
that CMH agencies have a minimum of 30% consumers/survivors and 20% family
members on their governing boards.

Sequel
By 1994, Ontario had a provincewide network of independent consumer/
survivor-run organizations. They were enshrined in provincial policy and were in
fact a central priority. Their funding stream had become permanent, and they were
seen as a structural part of the mental health system. Government had recast its
role from a sole focus on service system funding to that of investor in a wide range
of programs that could help people deal with mental illness. The new groups were
having a transformative effect on their members and were highly involved in the
broader mental health system. They had pioneered a kind of action that did not fea-
ture service providers and clients, and they had shown that this collective approach
went far beyond traditional self-help.
Despite this, there were significant problems. Chief among these were the
related issues of organizational stability and low funding levels. The CSDI had
created a beachhead, but it was stuck there. Although funding did eventually
increase, there was a multiyear period when budgets actually dropped in real
terms. To this day, funds allocated to CSIs are the same tiny proportion in relation
to overall mental health spending as in 1991, about 0.2% (O’Hagan, McKee, &
Priest, 2009).
There was also an erosion in the number of fully independent organizations
(O’Hagan et  al., 2009). Although numbers were not provided, the report stated
that “now, many CSIs have been absorbed into larger mainstream organizations,
often against their wishes, at the behest of the funder” (O’Hagan et al., 2009). The
authors report that most of the CSIs that have been absorbed believe they now have
too little autonomy.
The central team that had provided support to the new groups was also scaled
back. After the developmental period, it was dogged by years of ineffective opera-
tion and, as a result, was reviewed in 2005. This led to a 50% budget reduction
and “there is now no comprehensive provincial development support for CSIs
in Ontario” (O’Hagan et  al., 2009). Despite this, CSIs are still there, notwith-
standing two changes of government. To be sure, they are underfunded and still
uncomfortable in the service provider world. But they are there, and some of the
initiatives have soared. Sound Times Support Services and Working for Change
(formerly Ontario Council of Alternative Businesses), for instance, have bud-
gets in excess of $1 million; AWAY Express will in 2014 celebrate its 27th year
322 Transformative Policy Change

in business. The provincial umbrella organization, now called the Ontario Peer
Development Initiative, lists 48 CSIs in Ontario, although, as we have seen, some
of these are not fully independent.

The Future
Consumer/survivor initiatives in Ontario face a very challenging future and are
struggling to re-establish their importance in the eyes of planners and funders.
In 2006, a study was done of the CMH and addictions system for the Minister of
Health.5 Among other things, it recommended that the Ministry fund a review
of the CSIs with a view to learning how to better support them. This review,
referenced earlier, was completed in June 2009. The authors6of the report—
“Consumer Survivor Initiatives in Ontario:  Building for an Equitable Future”
recommended that:

1. The provincial consumer/survivor leaders and the Ministry of Health, with

involvement from its local planning bodies (called LHINs7) and the backing of the
Minister’s Advisory Group and the Select Advisory Committee, create new policy
and funding frameworks for CSIs, using recovery and social justice principles
2. The provincial consumer/survivor leaders and the Ministry, with involvement
from LHINs, create guidelines for the LHINS and others, to assist them to
develop a strong and equitable CSI presence in Ontario
3. The provincial consumer/survivor leaders, with the involvement of the Ministry
and the LHINs, strengthen the provincial consumer/survivor development and
advocacy role for CSIs
4. The strengthened provincial development and advocacy structure(s) offer
opportunities and resources to CSIs to develop and evaluate their services
5. The strengthened provincial development and advocacy structure(s) offer
opportunities and resources for the CSI workforce to be recruited, trained, and
educated
6. Five other reports over the last 13 years have made recommendations on CSIs.
Little action followed these reports. Our overriding recommendation is that
action must follow this report.

Four years later no action has been taken.

What lessons do the development and evolution of the CSDI teach? There are
no doubt many, but a few stand out. The CSDI was perhaps unusual in being a
government- conceived and -funded program. Was this helpful or harmful? In prac-
tice, it produced both good and bad results. On one hand, the CSIs in Ontario have
enjoyed a steady income flow and have had a high degree of security. They have
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 323

been successful at limiting bureaucratic intrusions around information gathering,

although this is increasingly difficult. They have also benefitted from being named
in policy and legitimized by their official recognition as funded components of the
system. As a result, they have had a sustained and positive impact on the mental
health system ( Janzen et al., 2006) and on their members (Nelson et al., 2006b;
Nelson et al., 2007). On the other hand, it is no longer clear that the government
and its LHINs regional planning bodies “get” CSIs anymore. The bottom-line,
business-oriented approach finds it odd that the government would fund groups
that often criticize the mental health system, groups that are not primarily interested
in statistics and outcome measurements. The Ministry of Health itself seems to suf-
fer from corporate amnesia and no longer emphasizes the priority of consumer/
survivor organizations.
Another lesson is the importance of building alliances with other players in the
system. Individual CSIs did this well and had a positive system impact, but not
enough was done by the central team. Initially, the CSDI had support in a number
of quarters. One of us (DR) was special advisor to the premier of Ontario and pro-
vided advice and support as the initiative developed. There was also strong support
from senior Ministry of Health staff. As time went by, support weakened, and the
initiative became isolated. The political landscape also changed, with a conservative
government coming to power in Ontario in 1995. This required careful lobbying
that was not effectively undertaken.

The Issue of Transformative Change

The CSDI relates to transformative change in two ways. The first is its system
impact. Did the CSDI lead to a fundamental transformation of the mental health
system in Ontario, Canada? The answer to this question is no. The CSDI has had
an important impact and continues to do so, and it forms the structural base
that supports consumer/survivor involvement at many tables, but the system
has not been fundamentally transformed. Taken as a whole, it has changed in
a way that can be characterized as ameliorative. This is essentially evolutionary
change that modifies aspects of a system but not its underlying dynamics and
power structure.
The second way that the CSDI relates to transformative change is within its
own frame of reference. In other words, was the CSDI an expression of transfor-
mational change in how it was conceived and operated? Nelson et al. (Chapter 1,
this volume) discuss this type of change and state that three factors are central:
attention to power relationships, decision-making, and resource allocation. Each
of these must be changed in ways that reverse the patterns that characterized the
previous approach. Taken on its own terms, the CSDI was transformative in these
three areas. The power relationships were dramatically different. All staff and the
324 Transformative Policy Change

controlling majority of board members were consumers/survivors. Unlike some

clinical programs, such as case management, whose support activities are meant to
be driven by the wishes of consumers, the CSDI made the control of power struc-
tural. In this sense, the CSDI did not contain or limit the notion of consumer/
survivor control within the clinical context. Instead, it changed the context and
said that the power must extend to the organization itself. Following along with
this structural control of power came a high degree of control over decision mak-
ing, the second area mentioned by Nelson et al. (Chapter 1, this volume). The
CSDI funding was channeled through a minimally restrictive policy. Although
it did require that the activities of the group be carried out using a self-help and
mutual aid paradigm, it left everything else open. This included advocacy that
challenged the mental health system itself. The final area—resource allocation—
was also fundamentally different. The organizations had full control of their funds
with minimal financial oversight.
This leaves us with a program that was transformational in its conception and
structure but that had an ameliorative, not transformational, impact on the larger
system. The transformational structure of the CSDI did lead to a transformative
impact in another critical area—the lives of many of the people who made up the
organizations. The visible fact of an organization that was centered on them and
their peers and that had as its model of action their capacities and knowledge was of
profound importance. The organizations expressed transformational principles at
all levels and in this sense “walked the talk.”
Some staff members were also deeply changed. It is easy to forget the profound
prejudice and ignorance that people with mental illness faced from many profes-
sionals in the early years of deinstitutionalization. The CSDI created new kinds of
experience for professionals. The experience of talking to a consumer/survivor out-
side of the clinical context was completely new and bred a new kind of understand-
ing. Again, a big part of the impact was derived from the structure of the CSDI
groups: they were consumer/survivor-controlled and -staffed. Sitting across a plan-
ning table from the executive director of a government-funded agency who happens
to also be a consumer/survivor is very different from having a patient representative
on a hospital committee. It more directly confronts the often unstated notions of
power that permeate the mental health system.
Consumer/survivor initiatives have tools, including advocacy skills, experi-
ence, and a better evidence base to support the case for the original vision and
purpose of the CSDI. Despite this, their current place in the system and the
small piece of the resource pie that they have captured have not had the kind
of transformative system impact that is needed. In the US context, Goldstrum
et al. (2006) do, however, sound a note of optimism. “Mental health self-help has
evolved from its de facto status into the mainstream of the mental health delivery
system” (p. 100). This is a major change in the past 20 years. But the bigger battle
still needs to be won.
 O ntar io’s Consumer / Sur v ivor De vel op me nt Ini tiative 325

Notes
1. The term “consumer/survivor” was coined by Kathryn Church in 1990 for a brief she wrote
with one of the authors (DR); the brief was called “Do the Right Thing Right.” It was pre-
sented to the legislative subcommittee on CMH legislation in Ontario.
2. Building Community Support for People: A Plan for Mental Health in Ontario (Graham Report;
1988). Two CMHA directors were on the committee and one on the research group. A
CMHA staffer was on the research group, too, as was one of the authors of this chapter ( JT).
3. In this chapter, the original group working on the CSDI is referred to as the founders and
includes the members of the team that set up the program: John Trainor, Julie Flatt, Dennis
Chang, Marnie Shepherd, Lynn Lavallee, Jacques Tremblay, and David Reville, all of whom
played a key role in guiding the program in its early years. Bev Lever was the highly supportive
director of CMH at the time and also played a key role.
4. At the suggestion of the CSDI groups, the central team funded a project called Speaking in
Our Own Voice. This provided grants for the production of written, audio, or video material.
All of this was reproduced and sent to every group.
5. David Reville & Associates. (2006). On Becoming New Best Friends.
6. Mary O’Hagan, Robyn Priest, and Heather McKee, all of whom are both consumers/survi-
vors and researchers.
7. Ontario is divided into 14 Local Health Integration Networks. The upshot is that the exec-
utive director of a consumer/survivor initiative with a budget of $143,000 is sitting at the
table with a hospital CEO who is managing a billion-dollar budget. This creates a clear power
imbalance.

References
Bachrach, L.  L. (2007). An overview of deinstitutionalization. New Directions for Mental Health
Services, 1983(17), 5–14. doi:10.1002/yd.23319831703
Bluebird, G. (2007). The history of the mental health consumer/survivor movement. Retrieved from
www.power2u.org/downloads/HistoryOf TheConsumerMovement.pdf
Campbell, J. (2005). The historical and philosophical development of peer-run programs. In S. Clay,
B. Schell, P. W. Corrigan, & R. O. Ralph (Eds.), On our own together: Peer programs for people
with mental illness (pp. 17–66). Nashville, TN: Vanderbilt University Press.
Chamberlin, J. (1990). The ex-patients’ movement:  Where we’ve been and where we’re going.
Journal of Mind and Behavior, 11(3), 323–336.
David Reville & Associates. (2006). On becoming new best friends: Integrating front and back offices
in community mental health and addictions. Ontario Ministry of Health and Long-Term Care.
Toronto.
Davidson, L., Chinman, M., Kloos, B., Weingarten, R., Stayner, D.,  & Tebes, J.  K. (1999). Peer
support among individuals with severe mental illness:  A  review of the evidence. Clinical
Psychology: Science and Practice, 6(2), 165–187. doi:10.1093/clipsy.6.2.165
Goldstrom, I. D., Campbell, J., Rogers, J. A., Lambert, D. B., Blacklow, B., Henderson, M. J., &
Manderscheid, R.  W. (2006). National estimates for mental health mutual support
groups, self-help organizations, and consumer-operated services. Administration and
Policy in Mental Health and Mental Health Services Research, 33(1), 92–103. doi:10.1007/
s10488-005-0019-x
Janzen, R., Nelson, G., Trainor, J., & Ochocka, J. (2006). A longitudinal study of mental health con-
sumer/survivor initiatives: Part IV- Benefits beyond the self? A quantitative and qualitative
study of system-level activities and impacts. Journal of Community Psychology, 34(3), 247–260.
doi:10.1002/jcop.20100
326 Transformative Policy Change

Klein, N. (2007). The shock doctrine:  The rise of disaster capitalism. Toronto, Ontario, Canada:
Random House.
Murphy, H.  B. M. (1972). Foster homes, the new back wards. Canada’s Mental Health, 2, 1–17.
doi: 10.1037/h0080681
Nelson, G., Ochocka, J., Janzen, R., & Trainor, J. (2006a). A longitudinal study of mental health
consumer/survivor initiatives: Part I—Literature review and overview of the study. Journal of
Community Psychology, 34(3), 247–260. doi:10.1002/jcop.20097
Nelson, G., Ochocka, J., Janzen, R., & Trainor, J. (2006b). A longitudinal study of mental health
consumer/survivor initiatives:  Part II—A quantitative study of impacts of participation on
new members. Journal of Community Psychology, 34(3), 247–260. doi:10.1002/jcop.20098
Nelson, G., Ochocka, J., Janzen, R., Trainor, J., Goering, P., & Lomotey, J. (2007). A longitudinal
study of mental health consumer/survivor initiatives: Part V- Outcomes at 3-year follow-up.
Journal of Community Psychology, 35, 655–665. doi:10.1002/jcop.20171
Ochocka, J., Nelson, G., Janzen, R., & Trainor, J. (2006). A longitudinal study of mental health con-
sumer/survivor initiatives: Part III—A qualitative study of impacts of participation on new
members. Journal of Community Psychology, 34(3), 247–260. doi:10.1002/jcop.20099
O’Hagan, M., Cyr, C., McKee, H., & Priest, R. (2010). Making the case for peer support: Report to the
peer support project committee of the Mental Health Commission of Canada. Retrieved from www.
mentalhealthcommission.ca/English/Pages/servicesystemsinformation.aspx
O’Hagan, M., McKee, H., & Priest, R. (2009). Consumer survivor initiatives in Ontario: Building
for an equitable future. Toronto:  Ontario Federation of Community Mental Health and
Addiction Programs. Retrieved from www.awaycourier.ca/uploads/file/CSI%20Builder%20
Report.pdf
Ontario Ministry of Health. (1993). Putting people first: The reform of mental health services in Ontario.
Retrieved from www.nelhin.on.ca
Scull, A. (2010). Deinstitutionalization and the rights of the deviant. Journal of Social Issues, 37(3),
6–20. doi:10.1111/j.1540-4560.1981.tb00825.x
Simmons, H.  G. (1990). Mental-health policy in Ontario compared to policy for persons with
developmental handicaps. Canadian Journal of Community Mental Health, 9(2), 163–176.
Talbott, J.  A. (1979). Deinstitutionalization:  Avoiding the disasters of the past. Hospital and
Community Psychiatry, 30(9), 621–624.
Trainor, J., & Church, K. (1984). A framework for support for people with severe mental disabilities.
Toronto: Canadian Mental Health Association.
Trainor, J., Shepherd, M., Boydell, K., Leff, A., & Crawford, E. (1996). Consumer/survivor develop-
ment initiative: Evaluation report. Toronto, Ontario Canada: Author.
Zinman, S., Budd, S.,  & Bluebird, G. (2009, December 17). The history of the mental health con-
sumer/survivor movement [Webcast]. Retrieved from http://promoteacceptance.samhsa.gov/
archtelpdf/history_consumer_movement.pdf
 16

Recovery-Oriented Mental Health Policies

Implications for Transformative Change in Five Nations

myra piat and l auren polvere

The recovery paradigm in mental health has emerged as a guiding vision for men-
tal health reform on the world stage. In several nations, including Australia, New
Zealand, England, the United States, and, most recently, Canada, recovery is iden-
tified as the central focus of national strategies for mental health planning and
reform (Adams, Compagni, & Daniels, 2006; Piat & Sabetti, 2009). Additionally,
several of these national policies use language of transformation in the context
of recovery-focused mental health reform (Mental Health Advocacy Coalition,
2008; Mental Health Commission of Canada, 2009; President’s New Freedom
Commission on Mental Health, 2003).
As new mental health policies introduce the language of recovery and trans-
formation, such policies are met with understandable skepticism. Claims of a
recovery-oriented mental health system may be a sign of “repackaging old wine in
new bottles,” in that values and practices may not actually change, despite being
cloaked in progressive language (Davidson, O’Connell, Tondora, & Lawless, 2005;
Jacobson & Greenley, 2001; Nelson, 2010). As this critique suggests, transforma-
tive change is only possible when recovery-oriented policies foster fundamental
and radical systemic changes in both values and implementation. Critical strate-
gies for transformative change include (a)  combating stigma and discrimination
(Angermeyer & Corrigan, 2005; Corrigan, 2004), (b) promoting the social inclu-
sion of individuals with psychiatric disabilities as valued members of the commu-
nity (Nelson, 2010; Onken, Craig, Ridgway, Ralph, & Cook, 2007), (c) consumer
and survivor involvement in reform efforts, (d) creating leadership roles for con-
sumers and survivors with psychiatric disabilities (Adame & Leitner, 2008), and
(e) confronting and restructuring power dynamics between the clinical community
and individuals with psychiatric disabilities (Mertens, 2007; Nelson, 2010).

327
328 Transformative Policy Change

The goal of this chapter is to provide a description and analysis of mental health
strategies in Australia, New Zealand, England, the United States, and Canada. We
are aware that the language of recovery is prominent in other countries, but our
focus in this chapter is on these countries. We examine how recovery is concep-
tualized within policy documents in each nation and evaluate the extent to which
critical strategies for transformative change are proposed. The chapter begins with
a discussion of the concept of recovery, including the origins of recovery. We then
turn to a discussion of the tensions between clinically oriented recovery definitions,
which focus on the reduction and elimination of symptoms, and more nuanced and
process-focused recovery definitions, which we trace to the consumer/survivor
movement. Next, we discuss the concept of recovery in the context of transforma-
tive change in mental health. We provide an analysis of the recovery concepts and
transformative change strategies put forth in policy documents within each nation.
Finally, we conclude with a discussion of the challenges and opportunities faced by
these nations regarding the possibility of transformative change in mental health,
emphasizing the importance of structural and systemic reforms that disrupt tradi-
tional power relations and place consumer/survivor leadership at the forefront of
recovery-oriented policy and practice.

Recovery in Mental Health

Origins
The concept of recovery has gained attention in the clinical community as a result
of longitudinal research studies on mental illness. This body of research finds that
many individuals with psychiatric disabilities show clinical improvement over
time (Anthony, 1993; Fisher  & Chamberlin, 2004; Gagne, White,  & Anthony,
2007; Harding, Brooks, Ashikaga, Strauss, & Breier, 1987). For example, Harding
and colleagues (1987) found that half to almost two-thirds of participants in
the research samples saw reductions in symptoms and improvements in overall
functioning. Such findings challenged long-held perspectives of mental illness as
lifelong, deteriorative conditions associated with inevitably poor outcomes (Piat
et al., 2009). These studies are significant to the recovery movement in mental
health because they provide empirical support for the premise that individuals
with psychiatric disabilities can, in fact, improve clinically over time (Adams
et al., 2006).
In addition to longitudinal research on clinical outcomes, the concept of
recovery has a rich history in the Consumer/Survivor Movement. Recovery was
discussed as early as 1930 in the writings of consumers and survivors (Onken
et  al., 2007). In the 1980s, the recovery vision was more widely articulated in
consumer/survivor narratives (Adam et al., 2006; Onken et al., 2007). The con-
sumer/survivor concept of recovery can be traced to the self-help movement
 R ecover y - O r iented Me ntal Health Poli c i e s 329

in addiction, where the term was used to describe abstinence from substance
use in the context of continued vulnerability to relapse (Davidson et al., 2005).
Recovery also has origins in the Independent Living Movement for individuals
with physical disabilities. This movement holds that recovery is possible “even
though a person’s condition may not change” because individuals can live mean-
ingful lives and experience full integration into their communities (Davidson
et al., 2005, p. 483).

Conceptualizing Recovery
Although recovery has received widespread attention in the literature, there has
been considerable diversity in the use and meaning of the term (Davidson et al.,
2005; Onken et al., 2007; Piat et al., 2009). Tensions exist between clinical recovery
perspectives and consumer/survivor recovery perspectives.
The clinical perspective introduces a symptom-focused concept of recovery,
in which recovery is defined by an alleviation in symptoms and a return to one’s
“pre-illness state” of functioning (Davidson et al., 2005), drawing from the longitu-
dinal outcome studies described earlier (Harding et al., 1987; Fisher & Chamberlin,
2004; Gagne et al., 2007). This clinical perspective on recovery utilizes methodolo-
gies that measure recovery as an outcome, as opposed to an ongoing and individual-
ized process.
Recovery definitions rooted in the Consumer/Survivor Movement resist the
clinical recovery definition and construct recovery as “both a concept and a pro-
cess” (Piat & Sabetti, 2009). Consumer/survivor definitions of recovery stress the
possibility of “recovery in” illness, as opposed to “recovery from” illness (Davidson
& Roe, 2007). A complete alleviation of symptoms is not considered the only mea-
sure of recovery, or even the most important component of recovery. Consumer/
survivor perspectives stress that recovery is a nonlinear, individualized process
(Anthony, 1993; Deegan, 1988; Onken et al., 2007). Recovery occurs as individ-
uals experience improvement in their quality of life (Anthony, 1993), rediscover
who they are (Davidson & Strauss, 1992; Deegan, 1988), develop a renewed sense
of hope and commitment (Deegan, 1988; Ridgway, 2001), find meaning and pur-
pose (Deegan, 1988; Onken et al., 2007), incorporate illness into their overall sense
of self (Davidson et al., 2005), and achieve empowerment and personal control
(Resnick, Rosenheck, & Lehman, 2004). Central to the consumer/survivor per-
spective of recovery is the notion that one is an active agent in his or her recovery
process (Deegan, 1988; Ridgway, 2001). Deegan emphasizes that “disabled persons
must be active and courageous participants in their own rehabilitation project or
that project will fail” (1988, p. 12). The consumer/survivor recovery concept is
rooted in methodologies that capture lived experiences of recovery. This perspec-
tive contrasts with the “back to health” concept of recovery suggested by the clinical
model (Deegan, 1988).
330 Transformative Policy Change

Additionally, many consumer/survivor perspectives stress the need for individ-

uals with psychiatric symptoms to recover from the “consequences of the illness,
rather than just the illness, per se” (Anthony, 1993, p. 523). Consumers/survivors
strive to recover from the stigma associated with having a psychiatric disability
(Onken et al., 2007). For many consumers/survivors, recovery is about “overcom-
ing the effects of being a mental patient, including poverty, substandard housing,
isolation, unemployment, loss of valued social roles and identity, loss of sense of self
and purpose in life, and iatrogenic effects of involuntary treatment and hospitaliza-
tion” (Davidson et al., 2005). As Corrigan (2007) notes, the social stigma associ-
ated with psychiatric disability often adversely affects the identities of individuals
with those disabilities.

Diversity in Consumer/Survivor Perspectives on Recovery

Although consumer/survivor perspectives on recovery articulate a rich, multilay-
ered process of meaning making, diversity exists within these conceptualizations.
Some consumers/survivors subscribe to certain components of the clinical recov-
ery perspective in that they define their own recovery by emphasizing a decrease
in symptoms and improvements in their overall functioning (Paquette & Navarro,
2005; Piat, Sabetti, & Bloom, 2009). For instance, some consumers/survivors note
that psychotropic medication is a central component of their recovery because
medication lessens their mental health symptoms (Piat, Sabetti, & Bloom, 2009;
Piat et al., 2009).
However, other consumers/survivors reject the medical model of mental illness
completely and describe recovering from the mental health system, as opposed to
recovering from a mental illness (Tenney, 2000). This critical perspective asserts
that the human rights of consumers/survivors are routinely violated by a mental
health system that oppresses, stigmatizes, and silences them, particularly in the con-
text of involuntary treatment. Therefore, recovery is a process that occurs as one is
liberated from the stigma, discrimination, and lack of power that results from being
a consumer or survivor. Many consumer/survivor accounts combine some com-
ponents of both clinical and critical perspectives in their personal recovery visions
(Piat et al., 2009).

Recovery in the Context of Transformative Change

The paradigm shift toward a recovery perspective represents a significant stride
in mental health reform, although several factors must be in place for the recov-
ery vision to facilitate transformative change in mental health. When assessing and
evaluating change in mental health systems, a distinction can be drawn between
what Watzlawick, Weakland, and Fisch (1974) refer to as “first-order change” and
 R ecover y - O r iented Me ntal Health Poli c i e s 331

“second-order change”. First-order change occurs when change takes place within
a system, without changing the fundamental values and structure of that system.
In contrast, second-order change occurs when the systemic issues and values
of the system are changed (Watzlawick et al., 1974), thus leading to transforma-
tion. According to Onken and colleagues (2007), recovery perspectives that focus
on restoring an individual’s mental health represent first-order change, whereas
addressing the structural and systemic barriers to the full inclusion of individu-
als with psychiatric disabilities represents second-order, transformative change.
Transformative change is “a fundamental alteration in the way the system operates”
(Nelson, 2010, p. 134). In the context of recovery-oriented mental health reform,
we discuss five central strategies for transformative change that guide our policy
analysis. Although there are numerous components to transformative change iden-
tified in the literature, the five strategies that guide our analysis are most pertinent
to recovery and mental health policy reform.

Combating Stigma and Discrimination

An essential strategy for implementing transformative change entails developing
efforts that address the stigma and discrimination experienced by persons with
psychiatric disabilities. Stigma impacts the lives of individuals with psychiatric
disabilities in that it “diminishes self-esteem and robs people of social opportuni-
ties” (Corrigan, 2004, p.  614). In addition to the devastating impact of stigma
on personal development and self-esteem, Corrigan, Markowitz, and Watson
(2004) explain that structural discrimination, whether intentional or uninten-
tional, severely restricts opportunities for individuals with psychiatric disabilities.
Hence, discrimination is a significant hindrance to a recovery-focused mental
health system. Stigma and discrimination against individuals with psychiatric
disabilities is pervasive and far-reaching. For mental health policies to effectively
cultivate transformative change, efforts must be made to address these social
injustices.

Social Inclusion
Although much literature on recovery focuses on personal journeys and processes,
transformative change models propose the notion of person–environment fit
(Levine & Perkins, 1987) through which communities integrate and fully include
individuals with psychiatric disabilities (Nelson, Lord,  & Ochocka, 2001). This
shift suggests a need for widespread social change, as opposed to rehabilitation
approaches, which expect individuals with disabilities to change to fit into the com-
munity (Nelson et al., 2001).
To promote the inclusion of individuals with psychiatric disabilities in the com-
munity, there is a need to address socioeconomic barriers. Poverty is a significant
332 Transformative Policy Change

barrier to social inclusion because poverty “exacerbates and interacts with mar-
ginalization, invisibility, and the ‘distorted visibility’ of mental illness” (Davidson,
Tondora, & Lawless, 2009, p. 167). Because poverty limits access and opportunities
within community life, it is also a barrier to mental health recovery (Davidson et al.,
2009).
Mental health policies that hold potential for transformative change must
address oppressive barriers to the full inclusion of people with disabilities by devel-
oping social change and social justice initiatives. This will result in greater access
to education, employment, and opportunities to become fully included, valued
members of the community (Mental Health Commission of New Zealand, 2004;
Onken et al., 2007).

Consumer/Survivor Involvement
It is essential to involve consumers and survivors in efforts to achieve transforma-
tive change within mental health service delivery systems. Consumer and survivor
involvement and participation has immediate practical relevance to system transfor-
mation efforts (Abrams, 2006). It is ideal for services to be perceived by consumers
and survivors as participatory, empowering, and tailored to their individual needs
(Tenney, 2000), which can be achieved through widespread consumer and survivor
participation. Persons with lived experiences have inside knowledge and wisdom,
and they provide a perspective critical to ensuring that reform efforts target prob-
lems and concerns most salient to consumer and survivors themselves (Abrams,
2006). Facilitating consumer/survivor involvement is a starting point for develop-
ing collaborative partnerships with people with psychiatric disabilities, as opposed
to imposing clinical authority.

Consumer/Survivor Leadership
Beyond involving consumers and survivors as collaborators in the process of mental
health reform, to achieve true transformation in mental health delivery systems, it
is essential for consumers and survivors to provide leadership. The notion of recov-
ery has a rich history in the Consumer/Survivor Movement in mental health, and,
as these nations move toward a recovery-oriented system, consumers and survi-
vors with lived experience have unparalleled expertise to offer. As Harding (1993)
explains, the standpoint of historically marginalized and oppressed individuals
brings forth new perspectives on social injustice that might be otherwise overlooked
by those in positions of authority. Furthermore, individuals who have experienced
stigma and marginalization firsthand have insights on how to lead efforts that move
beyond reform to transformative change. Although all of the components of trans-
formative change are important, we believe that consumer and survivor leadership
in reform efforts is particularly crucial.
 R ecover y - O r iented Me ntal Health Poli c i e s 333

Addressing Power Relations

Transformative change can only be realized when power relations are explicitly
addressed, leading to a collaborative partnership between consumers/survivors
and mental health providers (Tenney, 2000). As Mertens (2007) explains, power
differences result in the exclusion and marginalization of particular individuals in
society. Individuals can be “positioned” through discourse and social interactions
in ways that are disadvantageous (Harre & Mohaggadam, 2003; Parrott, 2003).
Historically, individuals with psychiatric disabilities have been “malignantly posi-
tioned” (Parrot, 2003) in a manner that calls into question their competence and
ability to have decision-making power in their own lives. Furthermore, individuals
with psychiatric disabilities have been denied a voice in shaping policy agendas for
mental health reform because their perspectives have been viewed as illegitimate
(McDermott & Varenne, 1995; Tyler, 2006) and inferior to authoritative clinical
perspectives. From a policy standpoint, recovery-oriented strategies must acknowl-
edge the history of oppression faced by individuals with psychiatric disabilities.
Concrete strategies must be developed for shifting power differences, particularly
by addressing consumers and survivors as critical stakeholders and looking to them
as leaders in the process of transformation. Along with consumer and survivor lead-
ership, we believe that addressing power relations within service delivery systems is
most critical in order for transformative change to occur.

Mental Health Policies: Implications

for Transformative Change
In this section, we present an analysis of influential mental health policies in
Australia, New Zealand, England, the United States, and Canada and the extent
to which these policies draw on strategies necessary for transformative change.
We analyzed national mental health plans, policies, and strategies for each coun-
try published between 1992 and 2011. In total, 44 documents were analyzed: 8 for
Australia, 11 for New Zealand, 17 for England, 5 for the United States, and 3 for
Canada. Each document was analyzed for (a) the overall purpose and theme, (b)
concepts and definitions of recovery, and (c) the five transformative change strate-
gies (stigma and discrimination, social inclusion, consumer and survivor involve-
ment, consumer and survivor leadership, and power relations).
Although there are commonalities across the strategies, each nation differs in
its conceptualization of recovery, specific goals, and emphasis on the strategies for
transformative change. We discuss conceptualizations of recovery and analyze strat-
egies for transformative change within each nation. It is important to note, how-
ever, that these nations are at different stages in terms of developing national mental
health reform strategies. Whereas New Zealand, Australia, and England started
334 Transformative Policy Change

developing national strategies for mental health in the 1990s, the United States
developed a comprehensive national strategy from 2001 to 2003, and Canada is
in the very earliest phase (Adams et al., 2006). Furthermore, the United States and
Canada are unique in that particular provinces and states are at different stages in
the reform process (Adams et al., 2006). For the purpose of this analysis, national
documents are the focus, rather than state and provincial policies.

An Overview of Recovery Concepts for Each Nation

Recovery occupies a central focus in mental health policy across each of the five
nations, although definitions of recovery are somewhat varied. Table 16.1 provides
a summary of recovery definitions used in policy documents within each nation.

Recovery in Australia
In Australia, recovery was incorporated in most key mental health policy documents
from the 1990s to the present. Principles for mental health reform were officially
endorsed in 1992. The main focus of the Australian strategy is on implementing
structural changes to the mental health service delivery system and integrating men-
tal health services with other health services (Australian Health Ministers, 2003).
Australian policy describes housing and social inclusion as essential components of
the recovery process (VICSERV, 2008).

Recovery in New Zealand

The recovery vision has a rich history in New Zealand, where recovery serves as “the
overarching value base for the entire mental health system” (Piat & Sabetti, 2009).
As stated in a key policy document, Te Haerenrenga (Mental Health Commission
of New Zealand, 2007), “Although recovery is an international movement, New
Zealand’s pioneering contribution has been to put recovery into the national mental
health policy . . . this made New Zealand, it is believed, the first country to endorse
the recovery approach” (p. 8).
In the New Zealand context, mental health reform has been shaped by “human
rights awareness, self-determination, the consumer society, multiculturalism,
and the Maori renaissance” (Destination: Recovery Te Unga ki Uta, Mental Health
Advocacy Coalition, 2008, p.  8). New Zealand emphasizes the contextual and
structural injustices that must be remedied to support recovery, as opposed to
constructing recovery as an individualized process. This emphasis makes New
Zealand’s conceptualization of recovery distinct from the other nations in the
analysis. In Recovery Competencies, a key policy document, it states:  “The vision
of recovery that comes out of the United States is more individualistic and mono-
cultural than many New Zealanders feel comfortable with. The existing recovery
literature tends not to focus as much as it could on discrimination, human rights,
 R ecover y - O r iented Me ntal Health Poli c i e s 335

Table 16.1  Definitions of Recovery in National Policy Documents

Nation Recovery Definition

Australia “[A]‌personal process of changing one’s attitudes, values, feelings, goals,
skills and/or roles. It involves the development of new meaning and
purpose and a satisfying, hopeful and contributing life as the person
grows beyond the effects of psychiatric disability. The process of recovery
must be supported by individually-identified essential services and
resource.” (Fourth National Mental Health Plan, Australian Government
Department of Health, 2009)
New “[A]chieving the life we want in the presence or absence of mental
Zealand distress. The right conditions for recovery are the strength and
interrelationships of our self-determination, personal resources,
supports, therapies, and our social and economic opportunities.”
(Destination: Recovery Te Unga ki Uta, Mental Health Advocacy
Coalition, 2008, p. 19)
England “[A] set of values about a person’s right to build a meaningful life for
themselves, with or without the continuing presence of mental health
symptoms. Recovery is based on ideas of self- determination and
self-management. It emphasizes the importance of hope in sustaining,
motivating, and supporting expectations of an individually fulfilled life”
(Shepard et al., 2008)
United “[A] self-determined and holistic journey that people undertake to heal
States and grow. . ..facilitated by relationships and environments that provide
hope, empowerment, choices and opportunities that allow people to
reach their full potential as contributing community members.” (A Call
for Change, SAMHSA, 2006a, p. 3)
Canada “[A] journey of healing that builds on individual, family, cultural and
community strengths, and enables people living with mental health
problems and illnesses to lead meaningful lives in the community, despite
any limitations imposed by their condition.” (Toward Recovery and
Well-Being, Mental Health Commission of Canada, 2009, p. 8)

cultural diversity or even the potential of communities to support recovery”

(Mental Health Commission of New Zealand, 2001, p.  2). New Zealand poli-
cies expand the recovery approach by describing the importance of families and
the consumer and survivor movement; the devastating effects of discrimination,
stigma, and exclusion; and the need to privilege diverse conceptualizations of
mental illness. In addition to the strong focus on recovery, several documents also
use language of transformation. As stated in Destination: Recovery Te Unga ki Uta,
336 Transformative Policy Change

“Transformation is the death of one way and the birth of another” (Mental Health
Commission of New Zealand, 2007, p. 14).

Recovery in England
A key policy goal in England is to move away from centralized control of mental
health services in favor of providing community-based services. Recovery has
become a more central focus in British policy documents in recent years. Prior to the
publication of The Journey to Recovery—The Government’s Vision for Mental Health
Care in 2001 (Department of Health, 2001)  recovery was not mentioned in key
policy documents. However, more current documents provide much discourse on
the nature of recovery (NIMHE Guiding Statement on Recovery, National Institute
for Mental Health in England, 2005; Making Recovery a Reality, 2008; Implementing
Recovery, Sainsbury Centre for Mental Health, 2008).
As in several other nations, England identifies significant barriers to recovery,
such as employment discrimination and housing instability. British policies also
discuss how the mental health system itself is a barrier to recovery. In Mental Health
and Employment, low expectations by health care staff is cited as a problem because
“staff may focus on maintenance of treatment rather than recovery and a return to
independent life” (Sainsbury Centre for Mental Health, 2007, p. 2). Implementing
Recovery (Sainsbury Centre for Mental Health, 2008) describes the findings from
a series of workshops that were held to address such organizational challenges to
implementing the recovery vision. Furthermore, recent documents use language
of transformation, identifying the recovery vision as central to achieving this.
According to Making Recovery a Reality, if the recovery vision is “seriously adopted,
[it] will bring a radical transformation of mental health services in this country in
the future” (Shepard, Boardman, & Slade, 2008, p. 1).

Recovery in the United States

In the United States, a framework was put in place to develop a Mental Health
Commission in 2001 (Hogan, 2003). The charge of the Commission was to “con-
duct a comprehensive study of the United States services delivery system, includ-
ing public and private providers, and make recommendations to the President”
(Hogan, 2003, p. 1467). The Commission’s review of the service delivery system
concluded that at least 42 different federal programs exist for persons with mental
illnesses, and “as a result, access to diverse, necessary elements of care is scattered,
and consumers or families are frequently responsible for coordinating supports and
services, often at times of crisis when their ability to accomplish this task is most
compromised” (Hogan, 2003, pp. 1467–1470). This “fragmentation” of the system
was identified as a crucial problem to address in reform efforts.
In the United States, policy documents call for a “fundamental transformation”
of the mental health system (Transforming Mental Health Care, SAMHSA, 2005).
 R ecover y - O r iented Me ntal Health Poli c i e s 337

However, challenges to transformation are stated explicitly: “Systems, like people,

do not change easily. Every system is perfectly designed to stay exactly the way it
is. For meaningful change to occur, some discomfort, imbalance, uncertainty, and
acceptance of risk are prerequisite” (President’s New Freedom Commission, 2003,
p.  4). In addition to the need to address the fragmented system, stigma, unfair
treatment limitations, and financial requirements are also described as obstacles
for people with mental illness in the current system (President’s New Freedom
Commission, 2003).
In the United States, recovery is the key organizing principle for reform in the
policy documents. Recovery is conceptualized as the goal for the mental health
services delivery system. The Commission concluded that “hope should be avail-
able to all individuals who have a mental illness, that complete remission would
be achieved by some, and that the spirit of hope implicit in recovery is important”
(Hogan, 2003, p. 1439).

Recovery in Canada
The Canadian policy context is unique from that of other nations in that mental
health did not receive widespread attention from a policy standpoint until recently.
In 2006, Out of the Shadows at Last (Standing Senate Committee on Social Affairs,
2006), Canada’s first national report on mental health was published, “compared
with more than 300 reports on the physical health system” (Kirby, 2008). Until the
publication of Out of the Shadows at Last, Canada was the only G8 country with-
out a national mental health strategy (Kirby, 2008). This national strategy called for
the creation of a Mental Health Commission in Canada, which was implemented
in 2007. The Mental Health Commission was charged with three strategic initia-
tives:  (a)  developing a national mental health strategy, (b)  conducting a 10-year
antistigma and antidiscrimination campaign, and (c) building a national knowledge
exchange center on mental health (Kirby, 2008).
Since the publication of Out of the Shadows at Last, Canada has developed a
framework for a national mental health strategy (Toward Recovery and Well-Being,
Mental Health Commission of Canada, 2009), and an Action Plan is under dis-
cussion and consultation at the time of this writing (Mental Health Commission
of Canada, 2011), and the launch of the mental health strategy: changing direc-
tions changing lives (Mental Health Commission of Canada, 2012). Recovery is
the grounding concept for mental health reform and the primary goal of mental
health services in Canada (Standing Senate Committee on Social Affairs, 2006;
Mental Health Commission of Canada, 2012). In the Canadian context, the “pillars
of recovery” are choice, community, and integration (Standing Senate Committee
on Social Affairs, 2006). Like New Zealand and the United States, Canadian policy
documents use language of transformation (Mental Health Commission of Canada,
2009, 2012).
338 Transformative Policy Change

Transformative Change Strategies: An Overview

of the Findings
In our analysis, we found several commonalities across the nations in terms of the
inclusion of transformative change strategies in the policy documents. In all five
nations, stigma and discrimination and social inclusion were identified as key
themes for reform. Consumer and survivor involvement was also emphasized by
all five nations. However, consumer and survivor leadership was identified most
explicitly in New Zealand and in recent policy documents in England. Although all
of the nations mentioned the need to address power relations in at least one policy
document, New Zealand and England described power relations most extensively.
In Table 16.2, we provide a summary of the number of documents that include each
transformative change strategy, organized by nation.

Addressing Stigma and Discrimination

The need to address stigma and discrimination was the transformative change
strategy addressed most frequently by each nation. All five nations described
national initiatives and campaigns aimed at reducing stigma and discrimination
(Australian Government Department of Health, 2009; Like Minds, Like Mine,
Ministry of Health, 2007; President’s New Freedom Commission, 2003; Mental
Health Commission Action Plan, 2011, Mental Health Commission of Canada,
2012).
For example, New Zealand’s campaign, Like Minds, Like Mine, is a publically
funded education program implemented to reduce the stigma and discrimination
faced by individuals with mental illness, particularly in the mental health work-
force and in the media. The preface to this document explains, “The slogan Like
Minds, Like Mine is a play on the phrase ‘we are all of one mind.’ It indicates that
mental illness can happen to you, me, or anyone” (Ministry of Health, 2007, p. 9).
Furthermore, in another document from New Zealand, Destination: Recovery Te
Unga ki Uta, it states, “anti-discrimination work is ongoing and focuses on behav-
iour change, not simply awareness raising” (Mental Health Advocacy Coalition,
2008, p. 10). In Canada, a central charge of the Mental Health Commission will
be to plan a 10-year anti-stigma campaign (Out of the Shadows, Standing Senate
Committee, 2006).
In British policy, there is a strong emphasis on combating stigma and discrimi-
nation in the workplace because employment is viewed as central to the personal
recovery process (Mental Health and Employment, Sainsbury Centre, 2007; Support,
Time and Recovery Workers, Department of Health, 2008). The United States also
emphasizes the need to eliminate stigma and discrimination in that individuals
with mental illnesses are denied full opportunities to engage in work and education
(Transforming Mental Health Care in America, SAMHSA, 2005).
 R ecover y - O r iented Me ntal Health Poli c i e s 339

Table 16.2 Transformative Change Strategies Identified in National

Policy Documents

Nation Number of Number of Documents Describing Transformative

Documents Change Strategies
Analyzed
Australia 8 Stigma and Discrimination (7)
Social Inclusion (4)
Consumer and Survivor Involvement (6)
Consumer and Survivor Leadership (0)
Power Relations (1)
New 11 Stigma and Discrimination (10)
Zealand Social Inclusion (7)
Consumer and Survivor Involvement (1)
Consumer and Survivor Leadership (6)
Power Relations (4)
England 17 Stigma and Discrimination (7)
Social Inclusion (7)
Consumer and Survivor Involvement (1)
Consumer and Survivor Leadership (6)
Power Relations (3)
United 5 Stigma and Discrimination (3)
States Social Inclusion (2)
Consumer and Survivor Involvement (1)
Consumer and Survivor Leadership (3)
Power Relations (1)
Canada 3 Stigma and Discrimination (3)
Social Inclusion (3)
Consumer and Survivor Involvement (0)
Consumer and Survivor Leadership (3)
Power Relations (1)

The numbers in parentheses identify how many documents describe each transformative change
strategy.

Social Inclusion
Social inclusion was also identified as a reform strategy by all five nations. In
Australia, social inclusion is a key theme because inclusion is believed to be “intrin-
sically linked to recovery” (Pathways to Social Inclusion, VICSERV, 2008). In the
Australian document, Pathways to Social Inclusion, five “facets of social exclusion”
that need to be addressed are named:  relational, economic, institutional, geo-
graphic, and symbolic exclusion (VICSERV, 2008).
340 Transformative Policy Change

Social inclusion is also strongly emphasized in New Zealand policies. Like

Australia, New Zealand constructs social inclusion as necessary and inextricably
linked to recovery. As stated in Te Haerenrenga, “[Social inclusion] is not just about
living in the community, but being part of it” (Mental Health Commission of New
Zealand, 2007, p. 203). In Our Lives in 2014, a document authored by individuals
with lived experience, it states: “We want a society and whanau1 that value us as fully
participating members, with the same rights and opportunities as other citizens”
(Mental Health Commission of New Zealand, 2004, p. 8).
Opportunities in the workforce are believed to be central to promoting social
inclusion for consumers and survivors in British policy (Health, Work, and
Well-Being:  Caring for Our Future, Department for Work and Pensions, 2005).
The United States describes social inclusion specifically in the context of access
to community life, including education and employment (Transforming Mental
Health Care, SAMHSA, 2005). In Canada, the current draft of the Mental Health
Commission Action Plan notes that “we must work to eliminate the barriers that hin-
der the full and effective participation of people living with mental health problems
and illnesses in society—whether these barriers are rooted in people’s attitudes and
behaviours, in the ways in which programs and institutions are organized, or in the
ways in which our schools, workplaces, and other everyday environments are struc-
tured” (Mental Health Commission of Canada, 2011, p. 10).

Consumer and Survivor Involvement

All five nations described the importance of consumer and survivor involvement
and participation in reform efforts. Consumer and survivor involvement was viewed
as important to achieving a recovery orientation in service delivery systems.
Consumer and survivor involvement was described in most of the Australian
policy documents, along with the importance of involving of carers, as well.
According to the Australian National Mental Health Policy (Australian Government
Department of Health, 2008) “while the first plan emphasized structural changes in
where and how mental health services were delivered, subsequent plans have broad-
ened the approach to give a stronger focus on partnerships between different sectors,
inclusion of promotion, prevention, and early intervention activity, and a greater
emphasis on the roles of consumers and carers” (p.  6). Furthermore, the Fourth
National Mental Health Plan from Australia (Australian Government Department
of Health, 2009) described the importance of “utilizing the skills and knowledge
of those with ‘lived experience’ ” by inviting consumers to assist one another and to
have input into staffing decisions and training programs (p. 53).
Consumer and survivor involvement and collaboration are cited as prerequisites
for transformation in the United States and Canada (A Call for Change, SAMHSA,
2006a; National Consensus Statement on Mental Health Recovery, SAMHSA, 2006b;
Mental Health Commission Action Plan, Mental Health Commission of Canada,
 R ecover y - O r iented Me ntal Health Poli c i e s 341

2011). The National Consensus Statement on Mental Health Recovery (SAMHSA,

2006b) from the United States describes the importance of consumers and survi-
vors coming together to “speak for themselves and their needs.” In the Canadian
Mental Health Commission Action Plan it states, “the relationship between people
living with mental health problems and illnesses and their families with those who
provide services must become a genuine partnership” (Mental Health Commission
of Canada, 2011, p. 9).

Consumer and Survivor Leadership

Although all five nations emphasized consumer and survivor involvement and col-
laboration in reform efforts, less discourse was provided regarding full consumer
and survivor leadership. Most of the nations briefly mentioned the notion of con-
sumer and survivor leadership in change process. However, this idea was fully devel-
oped in policy documents from New Zealand and England.
The evolution of consumer and survivor leadership is particularly striking in the
New Zealand policy documents. As described in Te Haerenrenga, consumer and
survivor perspectives were included in early policy documents, but “the report still
conveyed an impression of passivity and incompetence when portraying service
users” (Mental Health Commission of New Zealand, 2007, p. 123). In recent times,
this document holds that “service users have moved from challenging the status quo
to asking to be included as a part of the decision making (participation) and, from
there, towards setting agendas, making decisions and controlling resources (lead-
ership)” (p. 123). This evolution in consumer and survivor roles is evident in the
policy documentation. In Te Haerenrenga, an entire chapter is devoted to consumer
and survivor leadership (Mental Health Commission of New Zealand, 2007).
Some of the more recent policy documents in England shift from describing the
importance of consumer and survivor involvement and consultation to the critical
need for consumer and survivor leadership. Interestingly, in a policy document that
consists of accounts from multiple stakeholders regarding how to reform the men-
tal health system, the pieces written by consumers and survivors address the need
for leadership most frequently and most explicitly (Sainsbury Centre for Mental
Health, 2010). The consumer and survivor movement in England advocates for all
of the elements of transformative change, but advocates for consumer and survi-
vor leadership in reform efforts especially (Mental Health Service User Movement,
Wallcraft & Bryant, 2003).
Ideas of consumer and survivor leadership are alluded to in the United States
and Canada, but are not described in depth (A Call for Change, SAMHSA, 2006a;
National Consensus Statement on Mental Health Recovery, SAMHSA, 2006b; Mental
Health Commission Action Plan, Mental Health Commission of Canada, 2011). In
these nations, the language of consumer and survivor involvement is more domi-
nant than calls for leadership.
342 Transformative Policy Change

Power Relations
Of the five transformative change strategies used in this analysis, power relations
was the strategy that was focused on the least. Although each nation briefly men-
tioned power in at least one policy document, this theme emerged most strongly in
policies from New Zealand, followed by England.
A noteworthy trend was revealed in the Australian policy documents regard-
ing power relations. Although early emphasis was on protecting consumers from
abuse, “progressively, these concerns evolved to incorporate more contemporary
concepts of consumer empowerment and participation” (National Mental Health
Report, Department of Health and Aging, 2007, p. 53). In Australia, the dominance
of the clinical/medical is described as a problem that needs to be addressed in pol-
icy development and implementation. However, this theme was not developed as a
central focus in most key documents.
Consistent with strides made toward consumer and survivor leadership, several
policy documents in New Zealand explicitly address power relations. As described in
Destination: Recovery Te Unga ki Uta, the mental health system maintains long-held
inequalities: “The mental health arena, like everything else, reflects the dominant
forces in contemporary society” (Mental Health Advocacy Coalition, 2008, p. 23).
The document, Like Minds, Like Mine, promotes a social model of disability that
resists the pervasive clinical model of mental illness (Ministry of Health, 2007).
The social model of disability “describes disability as a process that happens when
one group of people create barriers by designing a world only for their way of liv-
ing” (p. 3). Such perspectives challenge the clinically dominant social construction
of mental illness and make explicit the power differentials that perpetuate injustice.
In England, The Future of Mental Health describes the need to address power rela-
tions: “the balance of power will no longer be so much with the system, but instead
will be more of an equal partnership between services and the individual who uses
or even chooses them” (Sainsbury Centre for Mental Health, 2006, p. 1). Making
Recovery a Reality (2008) discusses the need to shift the role of the professional
from that of an expert to a coach or trainer to change traditional power dynamics
from the clinical perspective. In a key British document published by the Sainsbury
Centre for Mental Health, Anne Beales, a person with lived experience, describes
the difference between involving consumers and survivors in more passive, tokenis-
tic roles, and shifting the balance of power to value consumers and survivors as
leaders:

To date, our involvement in using our experiences to re-shape the support

we received has, in the main, been about being “given” opportunities to
put forward a perspective or opinion. While some of these opportunities
have certainly led to an improved experience for many people accessing
services, and have helped to change wider attitudes to mental health and
 R ecover y - O r iented Me ntal Health Poli c i e s 343

well being, they still do not challenge power relationships between profes-
sionals and service users, and do not lead to a partnership where service
users can engage on an equal basis. (Sainsbury Centre for Mental Health,
2010, p. 13)

As this quote suggests, explicitly addressing power relations is an essential strat-

egy for fostering equality and transformative change. To effectively restructure the
power imbalance, inviting consumers and survivors to participate is not enough; it
is essential for consumers and survivors take leadership roles in the process.
In the United States, the need to address power differentials is made explicit in
the President’s New Freedom Commission report, although only in the context of
receiving mental health services. The report states: “In a recovery-oriented system,
the goal is to rebalance power so that the expertise and contributions of both the
consumer and the provider are mutually respected and have a bearing on decisions
about treatment” (p. 6). This sentiment also appears in the Canadian Mental Health
Commission Action Plan, which notes that, “the expertise gained from lived expe-
rience should be complemented by professional expertise, not dominated by it”
(Mental Health Commission of Canada, 2011, p. 9).

Conclusion
In our analysis, we found numerous commonalities across the national strategies
and policies. All five nations described recovery as the grounding concept for men-
tal health reform. Although most of the nations described recovery as an individu-
alized personal change process, New Zealand described contextual and structural
contributions of the recovery process most explicitly.
Of the five strategies for transformative change used in the analysis, we found that
reducing stigma and discrimination was identified most in the policy documents.
All five nations discussed the crucial need to address stigma and discrimination in
the process of mental health reform; stigma and discrimination were discussed in
30 of the 44 documents analyzed. Social inclusion was also described widely in the
policy documents within all five nations. Mention of social inclusion appeared in
23 of the documents, making it the second most discussed components of transfor-
mative change in the analysis. Consumer and survivor involvement was mentioned
in nine documents, whereas consumer and survivor leadership was mentioned in
18 documents, mostly from New Zealand and England. Power relations were dis-
cussed in 10 documents.
Although all five nations described the importance of consumer and survivor
involvement and participation, the New Zealand policies and strategies demon-
strated the strongest commitment to consumer and survivor leadership. Also, the
most recent policy documents in England conveyed an emerging emphasis on
344 Transformative Policy Change

consumer and survivor leadership. Of the five nations, New Zealand and England
provided the most detail regarding the need for consumers and survivors to hold
power and authority within a transformed mental health system.
In developing national strategies and initiatives, we hypothesize that some com-
ponents of transformative change, such as the need to address stigma and discrimi-
nation and the importance of promoting social inclusion, are less controversial, thus
leading to greater “buy in” from various stakeholder groups. Consumer and survi-
vor leadership and power relations, on the other hand, are strategies that are most
likely to bring about transformation or second-order change (Watzlawick et  al.,
1974). However, these strategies are likely to be more contentious to the clinical
community. For change to be transformative, service providers and leaders within
mental health delivery systems must relinquish power, which presents a significant
challenge.
Although all of the nations expressed commitment to reforming their respec-
tive mental health systems, the lack of emphasis on correcting power imbalances
suggests that the manner in which consumers and survivors are disadvantageously
positioned by the clinical perspective continues to be pervasive. Although con-
sumer and survivor involvement and participation is an important step toward
reform, consumer and survivor leadership is a prerequisite for achieving transfor-
mative change. When consumers and survivors act in a leadership capacity, they
are positioned in a powerful role and can affect policy change in a manner far more
significant than what can be achieved as invited participants in the reform process.
We see the lack of emphasis on consumer and survivor leadership as a significant
hindrance to transformative change. Given the history of oppression faced by indi-
viduals with mental health problems and the devastating stigma and discrimination
they face, true transformation can only be achieved when the structural elements
that perpetuate this injustice are eliminated.
All five of the nations in this analysis are making important strides toward reform
by focusing on the development of mental health strategies that center on recovery
as the guiding vision. However, in our opinion, the most important policy direction
from this point forward is the development of valued leadership roles for consum-
ers and survivors that shift the imbalance of power that has dominated the mental
health arena.
Finally, it is important to note that there is often a gap between visionary poli-
cies and how the resulting principles are actually implemented. A limitation of this
analysis is that we focused on national strategies and policies, as opposed to evaluat-
ing service delivery. As others have noted, “sweeping rhetoric” about mental health
transformation is not new, but “it is questionable whether [legislative initiatives]
have resulted in significant improvements in the lives of people with serious men-
tal illness” (Davidson et al., 2009, p. xii). We are in agreement with this critique,
although we remain hopeful that policies for system reform can be implemented in
a manner that leads to a greater realization of transformative change.
 R ecover y - O r iented Me ntal Health Poli c i e s 345

Several strategies for translating policy initiatives into concrete services have
been identified in the literature. Training the mental health workforce in the prin-
ciples of recovery is essential for realizing transformative changes within service
delivery (Davidson, Tondora, & O’Connell, 2007). Simply adding new programs
or peer support programs into existing service structures is not enough to realize
transformative change (Davidson et al., 2007). Rather, a key step is to introduce the
entire service system to a recovery orientation. This entails fundamentally shifting
the objectives of services away from the clinical model, which emphasizes “treating
patients,” to the recovery model, which focuses on supporting individuals in real-
izing the goals that matter to them, regardless of whether or not symptoms are fully
eliminated. For many service delivery systems, even the conceptual shift away from
the clinical model is a challenge because the traditional power dynamics between
clinicians and service users are deeply ingrained.
Furthermore, it is essential to make explicit how recovery ideology can be
translated into practice. A  central component of the process is to operationalize
recovery-oriented services into concrete practices and to continuously measure
and evaluate the extent to which service delivery systems are achieving the goal of
system transformation (O’Connell, Tondora, Croog, Evans,  & Davidson, 2005;
Davidson et al., 2007). Continuous evaluation plays an important role in the pro-
cess. It is most crucial that findings of evaluations are delivered to all stakeholders in
a collaborative manner and that the findings are used to develop new strategies for
continuous improvement (O’Connell et al., 2005).
Because consumer and survivor leadership is critical to the transformative
change process, there is a need to identify objective and concrete measures toward
this goal. For instance, systems may require that consumers or survivors occupy a
specific percentage of seats on all mental health boards. Although this strategy is
insufficient in terms of correcting power differentials between providers and con-
sumers/survivors, such concrete benchmarks are a way of promoting accountabil-
ity as systems move toward a recovery orientation.
As suggested earlier, a key future research direction is to perform ongoing, rig-
orous evaluations of how the goals and objectives stated in the policies are being
implemented in service delivery systems within each nation. Preferably, such evalu-
ations should draw from participatory research methodologies through which
researchers and providers partner with consumers and survivors. To better under-
stand the extent to which visionary policies are actually impacting the nature of
services and the lives of service users, ongoing evaluation is crucial.

Note
1. Whanau is extended family, which is “recognized as the foundation of Maori society” (Mental
Health Foundation of New Zealand, 2008).
346 Transformative Policy Change

References
Abrams, L. S. (2006). Listening to juvenile offenders: Can residential treatment prevent recidivism?
Child and Adolescent Social Work Journal, 23(1), 61–85.
Adame, A. L., & Leitner, L. M. (2008). Breaking out of the mainstream: The evolution of peer sup-
port alternatives to the mental health system. Ethical Human Psychology and Psychiatry, 10(3),
146–162.
Adams, N., Daniels, A., & Compagni, A. (2006). International pathways to mental health transfor-
mation. International Journal of Mental Health, 38(1), 30–45.
Angermeyer, R. N., & Corrigan, P. W. (2005). The stigma of mental illness: Concepts, forms, and
consequences. European Psychiatry, 20(8), 529–539.
Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health ser-
vice system in the 1990s. Psychosocial Rehabilitation Journal, 16(4), 11–23.
Australian Government Department of Health. (2008). National mental health policy. National
Mental Health Strategy. Canberra: Commonwealth of Australia.
Australian Government Department of Health. (2009). Fourth National Mental Health Plan:  An
agenda for collaborative government action in mental health 2009-2014. Canberra: Commonwealth
of Australia.
Australian Health Ministers. (2003). National mental health plan 2003-2008. Canberra: Australian
Government, Department of Health.
Corrigan, P. W. (2004). How stigma interferes with mental health care. American Psychologist, 59(7),
614–625.
Corrigan, P. W. (2007). How clinical diagnosis might exacerbate the stigma of mental illness. Social
Work, 52(1), 31–39.
Corrigan, P. W., Markowitz, F. E., & Watson, A. (2004). An attribution model of public discrimina-
tion towards persons with mental illness. Journal of Health and Social Behavior, 44, 162–179.
Davidson, L., Tondora, J., & Lawless, M. S. (2009). A practical guide to recovery-oriented practice: Tools
for transforming mental health care. New York: Oxford University Press.
Davidson, L., O’Connell, M. J., Tondora, J., & Lawless, M. (2005). Recovery in serious mental ill-
ness: A new wine or just a new bottle? Professional Psychology: Research and Practice, 36(5),
480–487.
Davidson, L., & Roe, D. (2007). Recovery from versus recovery in serious mental illness: One strat-
egy for lessening confusion plaguing recovery. Journal of Mental Health, 16(4), 459–470.
Davidson, L., & Strauss, J. S. (1992). Sense of self in recovery from severe mental illness. British
Journal of Medical Psychology, 65, 131–145.
Davidson, L., Tondora, J., & O’Connell, M. J. (2007). Creating a recovery-oriented system of behav-
ioral health care:  Moving from concept to reality. Psychiatric Rehabilitation Journal, 31(1),
23–31.
Deegan, P. E. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation
Journal, 11(4), 11–19.
Department for Work and Pensions, Department of Health and Health and Safety Executive.
(2005). Health, work and well-being: Caring for our future. Policy paper. London: Authors.
Department of Health. (2001). The journey to recovery. The government’s vision for mental health care.
London: Author.
Department of Health. (2008). Support, time and recovery (STR) workers: A competence framework.
London: Author.
Department of Health and Ageing. (2007). National mental health report 2007: Summary of twelve
years of reform in Australia’s mental health services under the National Mental Health Strategy
1993-2005. Canberra, AU: Commonwealth of Australia.
Fisher, D.,  & Chamberlin, J. (2004). A consumer/survivor led transformation of today’s
institutionally-based system to tomorrow’s recovery-based system. Lawrence, MA:  National
Empowerment Center.
 R ecover y - O r iented Me ntal Health Poli c i e s 347

Gagne, C., White, W., & Anthony, W. A. (2007). Recovery: A common vision for the fields of mental
health and addiction. Psychiatric Rehabilitation Journal, 31(1), 32–37.
Harding, C. M., Brooks, G. W., Ashikaga, T., Strauss, J. S., & Breier, A. (1987). The Vermont longi-
tudinal of person with severe mental illness, II. Long-term outcome of subjects who retrospec-
tively met DMS-III criteria for schizophrenia. American Journal of Psychiatry, 144(6), 718–726.
Harding, S. (1993). Rethinking standpoint epistemology: What is strong objectivity? In L. Alcoff &
E. Potter (Eds.), Feminist epistemologies (pp. 49–82). New York: Routledge.
Harre, R., & Moghaddam, F. (2003). Introduction: The self and others in traditional psychology and
in positioning theory. In R. Harre & F. Moghaddam (Eds.), The self and others: Positioning indi-
viduals and groups in personal, political, and cultural contexts (pp. 1–12). Westport, CT: Praeger
Publishers.
Hogan, M. F. (2003). The President’s new Freedom Commission: Recommendations to transform
mental health care in America. Psychiatric Services, 54(11), 1467–1474.
Jacobson, N.,  & Greenley, D. (2001). What is recovery? A  conceptual model and explication.
Psychiatric Services, 52, 482–485.
Kirby, M. (2008). Mental health in Canada:  Out of the shadows forever. Canadian Medical
Association Journal, 178(10), 1320–1322.
Levine, M., & Perkins, D. V. (1987). Principles of community psychology: Perspectives and applications.
New York: Oxford University Press.
McDermott, R., & Varenne, H. (1995). Culture “as” disability. Anthropology & Education Quarterly,
26(3), 324–348.
Mental Health Advocacy Coalition. (2008). Destination:  Recovery Te Unga Ki Uta:  Te Oranga.
Discussion paper. Auckland: Mental Health Foundation of New Zealand.
Mental Health Commission Action Plan. (2005). Service user workforce development strategy for the
mental health sector: 2005–2010. New Zealand: Mental Health Commission.
Mental Health Commission of Canada. (2009). Toward recovery and well-being: A framework for a
mental health strategy for Canada. Calgary, AL: Author.
Mental Health Commission of Canada. (2011). Mental health strategy for Canada. Calgary, AL: Author.
Mental Health Commission of Canada (2012). The Mental Health Strategy for Canada: Changing
Directions Changing Lives. Calgary, SL: Author.
Mental Health Commission of New Zealand. (2004). Our lives in 2014: A recovery vision from people
with experience of mental illness for the second mental health plan and the development of the health
and social sectors. Wellington, NZ: Author.
Mental Health Commission of New Zealand. (2001). Recovery competencies for New Zealand mental
health workers. Wellington, NZ: Author.
Mental Health Commission of New Zealand. (2007). Te Haerenrenga mo te Whakaoranga 1996–
2006: The journey of recovery for the New Zealand mental health sector. Wellington, NZ: Author.
Mertens, D.  M. (2007). Transformative paradigm:  Mixed methods and social justice. Journal of
Mixed Methods Research, 1(3), 212–225.
Ministry of Health. (2007). Like minds, like mind national plan 2007–2013: Programme to counter
stigma and discrimination associated with mental illness. Wellington, NZ: Ministry of Health.
National Institute for Mental Health in England. (2005). NIMHE guiding statement on recovery.
London: Author.
Nelson, G. (2010). Housing for people with serious mental illness:  Approaches, evidence, and
transformative change. Journal of Sociology & Social Welfare, 37(4), 123–146.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
O’Connell, M., Tondora, J., Croog, G., Evans, A., & Davidson, L. (2005). From rhetoric to rou-
tine: Assessing perceptions of recovery-oriented practices in a state mental health and addic-
tion system. Psychiatric Rehabilitation Journal, 28(4), 378–386.
Onken, S. J., Craig, C. M., Ridgway, P., Ralph, R. O., & Cook, J. A. (2007). An analysis of the defini-
tions and elements of recovery: A review of the literature. Psychiatric Rehabilitation Journal,
31(1), 9–22.
348 Transformative Policy Change

Paquette, M.,  & Navarro, T. (2005). Editorial:  Lives recovered. Perspectives in Psychiatric Care,
41(3), 95–96.
Parrott, W. G. (2003). Motivational styles and positioning theory. In R. Harre & F. Moghaddam
(Eds.). The self and others: Positioning individuals and groups in personal, political, and cultural
contexts (pp. 29–43). Westport, CT: Praeger Publishers.
Piat, M.,  & Sabetti, J. (2009). The development of a recovery-oriented mental health system in
Canada:  What the experience of commonwealth countries tells us. Canadian Journal of
Community Mental Health, 28(2), 17–33.
Piat, M., Sabetti, J., & Bloom, D. (2009). The importance of medication in consumer definitions of
recovery from serious mental illness: A qualitative study. Issues in Mental Health Nursing, 30,
482–490.
Piat, M., Sabetti, J., & Couture, A., Sylvestre, J., Provencher, H., Botschner, J., & Staynor, D. (2009).
What does recovery mean for me? Perspectives of Canadian mental health consumers.
Psychiatric Rehabilitation Journal, 32, 585–593.
President’s New Freedom Commission on Mental Health. (2003). Achieving the prom-
ise:  Transforming mental health care in America. Final report (No. SMA- 3-3832. Rockville,
MD: US Department of Health and Human Services.
Resnick, S. G., Rosenheck, R. A., & Lehman, A. F. (2004). An exploratory analysis of correlates of
recovery. Psychiatric Services, 55(5), 540–547.
Ridgway, P. (2001). Restorying psychiatric disability: Learning from first person recovery narra-
tives. Psychiatric Rehabilitation Journal, 24(4), 355–363.
Sainsbury Centre for Mental Health. (2006). The future of mental health:  A  vision for 2015.
London: Author.
Sainsbury Centre for Mental Health. (2007). Mental health and employment. London: Author.
Sainsbury Centre for Mental Health. (2008). Implementing recovery: A new framework for organiza-
tional change. Position paper. London: Author.
Sainsbury Centre for Mental Health. (2010). Looking ahead. The next 25  years in mental health.
London England: Sainsbury Centre for Mental Health.
SAMHSA. (2005). Transforming mental health care in America. The federal action agenda: First steps.
Rockville, MD: US Department of Health and Human Services.
SAMHSA. (2006a). A call for change:  Toward a recovery-oriented mental health service system for
adults. Rockville, MD: US Department of Health and Human Services.
SAHMSA. (2006b). National consensus statement on mental health recovery. Rockville, MD:  US
Department of Health and Human Services.
SAMHSA. (2011). Leading change:  A  plan for SAMHSA’s role and actions 2011–2014. Rockville,
MD: US Department of Health and Human Services.
Shepherd, G., Boardman, J., & Slade, M. (2008). Making recovery a reality. Sainsbury Centre for Mental
Health: Removing barriers and achieving change. London: Sainsbury Centre for Mental Health.
Standing Senate Committee on Social Affairs, Science and Technology. (2006). Out of the shadows
at last Final report. Ottawa, Ontario Canada: Author.
Tenney, L. (2000). It has to be about choice. Journal of Clinical Psychology, 56(11), 1433–1445.
Tyler, T. R. (2006). Psychological perspectives on legitimacy and legitimation. Annual Review of
Psychology, 57, 375–400.
VICSERV. (2008). Pathways to social inclusion proposition papers. Elsternwick: Psychiatric Disability
Services of Victoria.
Wallcraft, J.,  & Bryant, M. (2003). Mental health service user movement in England. Policy paper.
London: The Sainsbury Centre for Mental Health.
Watzlawick, P., Weakland, J., & Fisch, R. (1974). Change: Principles of problem formation and problem
resolution. New York: Norton.
 PA RT E I G H T

CONCLUSION
 17

Transforming Research for Transformative

Change in Mental Health
Toward the Future

nev jones, jay harrison, rita aguiar , and l auren munro

Genuinely transformative change, as discussed in Chapters 1 and 2 of this volume,

involves not merely the substitution of one dominant ideology for another, but
rather a far-reaching social justice–oriented reconfiguration of traditional power
hierarchies. It is our contention that increased user/survivor1 autonomy and control
in mental health research have a fundamental contribution to make to the transfor-
mation of community mental health (CMH) precisely through such a redistribution
of power. Users and survivors of the mental health system must be allowed to take
on leading roles in both the generation and dissemination of scientific knowledge.
Transformative change, according to this approach, will thus come from the histori-
cal margins, driven by traditionally subjugated knowledges grounded in the lived
experience of madness and its social and institutional contexts.
Traditionally, users of mental health services—particularly those classified
as “seriously and persistently ill”—have had virtually no control over either the
nature of the services they receive or the evidence base that legitimizes these ser-
vices. Admittedly, the past few decades have witnessed substantive improvements
in the overall participation of users/survivors in the areas of policy, evaluation,
and governance as user involvement has been recognized as a key component of
person-centered systems of care. In addition, there has been some growth in the
adoption of participatory approaches in mental health services research (see,
among others, the work of Pat Corrigan, Larry Davidson, and others in the United
States; Geoff Nelson and colleagues in Canada; and José Ornelas in Portugal).
Nevertheless full control over the research process—including the power to decide
what questions are asked, what ideologies are challenged, and what methodologies

351
352 Conclusion

are used—remains almost wholly outside the hands of service users, survivors, and
those who self-identify as “mad.”
We suggest that, in addition to embodying a truly emancipatory practice, user/
survivor-led research has the potential to generate new user/survivor-focused
knowledge that will contribute to the transformation of CMH at both the individ-
ual and systems levels. For decades, community-based user/survivor communities
and organizations have led in the creation of innovative alternatives to mainstream
mental health services—alternatives grounded in direct experience of both mad-
ness and service use. Leadership in the domain of research, as already suggested by
work in the United Kingdom, promises to bring these same perspectives and inno-
vations to the forefront of research, evaluation, and development.
Fulfillment of this potential, of course, clearly depends on the adequate resourc-
ing of training, including access to academia, and community capacity-building, as
well as the creation of real and figurative spaces that promote collective meaning
making among users/survivors—including conferences, user-run research initia-
tives, and other communities of practice. Enduring environmental and sociopoliti-
cal barriers—barriers that include the devaluation of lived experience in the context
of science and social research, academic stigma, inadequate accommodations, and
insufficient resourcing of community-owned research—must also be addressed.
Given that our arguments are premised on the importance of a collective revalu-
ation of lived experience, before outlining our chapter, we want to say something
about our own positions and experiences. Each of the co-authors of this chapter
identifies as a user and/or survivor of the mental health system. Collectively, we
have experienced a range of psychiatric issues, services, and labels (from depres-
sion to psychosis, peer support to involuntary hospitalization).2 Although we hail
from three different universities in three different countries, we have all at various
points experienced significant stigma, discrimination, and lack of understanding in
the context of research and higher education, as well as varying degrees of a per-
ceived disconnect between the values we have been taught (in community psychol-
ogy [CP] and social work) and the actual state of mental health research in our
respective disciplines. It is in large part because of these experiences that we are all
resolutely committed to challenging the status quo, as well as those practical and
ideological barriers that continue to stymie meaningful user/survivor involvement
in research. Above all, as junior researchers, we hope to see—and help build—a
radically different research enterprise informing the future of system transforma-
tion within CMH that prioritizes the experiential knowledge of users/survivors and
openly acknowledges and challenges various manifestations of stigma, discrimina-
tion, and ableism within academia.
In this chapter, we begin with a brief history of user/survivor involvement in
research, propose a working definition of power, and use this definition to critically
reflect on some of the shortcomings of participatory approaches as currently prac-
ticed in the context of mental health and disability. Next, we focus on two different
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 353

ways of simultaneously addressing these shortcomings and affording greater auton-

omy and control to user/survivors: (a) through the support and development of
user/survivor community-based-and-owned approaches that emphasize substan-
tive community control over the research process, and (b)  through the targeted
training and support of academic user/survivor researchers. We conclude with
some reflections specific to CP, as well as with general suggestions for moving
toward a more critical and emancipatory model of user/survivor involvement in
mental health research.

Brief History of User/Survivor Participation in Mental

Health Research
As briefly mentioned in our introduction, users/survivors (or those historically
labeled as mad, insane, or mentally ill) have traditionally almost exclusively been
the passive subjects of research, including what are now widely considered grossly
unethical neurosurgical experiments (e.g., United States Senate Subcommittee
on Health, 1973). Even today, vastly more users/survivors are involved in mental
health research as subjects rather than as active researchers, participants, consul-
tants, or advisory board members. Because of this history and context, significant
reservations and even hostility persist in at least some user/survivor communities
with respect to mental health research evidence misappropriated from their lived
experience and used to further legitimize practices such as electroconvulsive ther-
apy (ECT) and forced treatment, considered by some to be oppressive, while ignor-
ing evidence of alternative conceptualizations of madness and practices for healing
distress (these reservations parallel experiences and attitudes in other marginalized
and vulnerable populations—see, e.g., Byrd et al., 2011). These factors continue to
affect relationships between users/survivors and researchers, as well as community
collaboration, issues of identity, and perceptions of power.
Although researchers in allied fields such as community development and adult
education began to emphasize greater community participation in and control
over research with marginalized communities beginning in the 1970s (Fals-Borda,
1987; 2006; 2008; Freire, 1982; Hall, 1992), in the fields of psychiatry and men-
tal health, there has never been real consensus regarding the importance of user/
survivor participation. In psychiatric rehabilitation and CMH in our home coun-
tries (Canada, Portugal, and the United States), small groups of researchers have
utilized participatory methods for the past several decades, whereas other “medi-
cal” subfields (particularly those concerned with the etiology, epidemiology, nosol-
ogy, and phenomenology of psychiatric disability) rarely include even minimal
participatory components. Although there are also certainly individual (disclosed
and undisclosed) user/survivor researchers in our countries of origin—researchers
whose considerable accomplishments we by no means want to downplay—there
354 Conclusion

are virtually no organized groups of such researchers nor systematic efforts to col-
lectively theorize issues of user/survivor researcher identity or discourse.3
Meanwhile, in the United Kingdom, more widespread opportunities for par-
ticipatory involvement emerged during the 1980s and 1990s in the form of ser-
vice evaluation and policy-oriented participatory research (PR); opportunities
that allowed users/survivors to gain substantial research experience (Wallcraft &
Nettle, 2009). Early pioneers in the United Kingdom, such as Jan Wallcraft, Peter
Beresford, Diana Rose, Alison Faulkner, and many others, have since worked to
develop a robust British user/survivor researcher movement and discourse. In
2009, a group of prominent survivor researchers edited the first full compilation of
survivor theory, methodology, and perspectives, as well as first-person accounts of
research involvement in both academia and the community (Sweeney, Beresford,
Faulkner, Nettle, & Rose, 2009).
Even more recently, European users/survivors have begun to advocate strongly
for user-led or -controlled research (Beresford, 2009; Faulkner & Thomas, 2002;
Russo, 2012). Beresford and Evans (1999) define such research as both mean-
ingful involvement in and control over every step of the process; users/survivors
should no longer be subordinated to passive roles, even in subtle ways. In user/
survivor-controlled research, the initial idea for the investigation comes from users/
survivors, and they are also responsible for the design of the research (methodology,
type of analyses), are accountable both ethically and financially, and are responsible
for the decision-making process related to scientific production and dissemination.
In sum, user/survivor-controlled research creates a new equilibrium relating to
power within the research process intended to explicitly challenge the status quo
and capitalize on the insights of users/survivors.
Although discourse regarding user/survivor-controlled research remains strik-
ingly underdeveloped in most parts of the world, the exigency of reconfiguring
power relations that it raises strikes us as fundamental to the transformation of
mental health research. Surely, an emancipatory system cannot be one in which
nonuser “experts,” having never experienced the strangeness of psychosis or the
dehumanization of certain forms of mental health “treatment,” continue to make
nearly all crucial research decisions. Nevertheless, for such involvement or control
to be “real” or “genuine,” both the macro- and micro-operations of power as they
operate in research and academia must be critically addressed. Before turning to our
own suggestions for research transformation, we thus provide a working definition
and discussion of power.

What Is Power?
Although power has been theorized in many ways (Kloos, Ornelas, & Nelson,
Chapter 2, this volume), the definition we adopt here is grounded in Foucauldian
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 355

theory (Foucault, 1972; 1977; 1980; Prilleltensky, 2008; Rose, Thornicroft, &
Slade, 2006) and holds that power is ubiquitous, diffuse, and fundamentally rela-
tional. According to this framework, an individual does not “possess” power as
she would a material good, but rather exercises power in the context of a net of
social and institutional relations that variably reinforce, challenge, potentiate, or
otherwise structure her actions. Thus, a researcher’s decision to do, for example,
X or Y, would not be seen as simply “her” decision but rather as an act that (a)
has meaning and influence because of a variety of contextual social, political, and
institutional factors and (b) in its own right reinforces, challenges, or (re)struc-
tures social and political discourse. We certainly agree with Kloos et al. (Chapter
2, this volume) that power relations often involve control over social and mate-
rial goods and values, as well as various forms of internalization and subjection,
but nevertheless focus on Foucault’s power framework to call attention to some
of the ways in which larger social, institutional, or research settings collectively
shape discourse concerning legitimate or illegitimate knowledge and research
practice.
Foucault’s (1977) elaboration of the term power/knowledge is likewise impor-
tant to our discussion of research settings inasmuch as it emphasizes the mutual
implication of the exercise of power and the use and generation of knowledge.
Knowledge and power, that is, co-constitute one another. Asymmetrical power rela-
tions, such as those that exist between psychiatric researchers and service users/
survivors—one of whom is the expert, the other most often a relatively passive
recipient or beneficiary—fundamentally shape discourse about “mental illness.”
Diagnostic criteria, disability thresholds, and appropriate treatment are all domains
of knowledge controlled by “experts.” However, it is not simply the case that non-
user researchers “possess” power in the context of these relations, but rather that
they are able to exercise power by virtue of the fact that their acts and discourse are
supported and legitimized by a network of much larger and more diffuse social rela-
tions and forces. These include cultural affirmations of the value of “science” in gen-
eral, norms related to class, and the continued dominance of seemingly “timeless”
cultural binaries that pit reason and logic against madness, emotion, and “irrational-
ity.” Both subjective first-person experiences of psychiatric issues and services and
peer-designed interventions are thus often devalued relative to the “objective” and
expert knowledge held by nonpeer clinicians or researchers, not merely because of
their conscious efforts to control discourse, but also because of these larger social
and cultural forces.
As part of any critical examination of specific manifestations of power/knowl-
edge, Foucault (1972) accordingly recommends that we always begin by asking not
only who, in a particular context, “is speaking” but also who “is accorded the right to
use [a particular] sort of language? Who is qualified to do so?” As well as from where
“discourse derive[s]‌its legitimate [or legitimizing] source and point of application?”
(pp. 50–51, emphases added). In the context of research, then, a critical interrogation
356 Conclusion

of power would demand that we ask not only who is doing what, but “what” is allow-
ing them to do and say the things they do and say. What are the processes, for example,
whereby an individual is “accorded the right” to determine what questions are asked
and what methodologies used in a given type of research project, to apply for grants,
to publish in academic journals, and to speak at academic conferences? What types of
experience, insight, and/or distress are deemed scientifically “legitimate” in these pro-
cesses of knowledge production and dissemination? What are the institutional and
professional norms that provide “training” or grant access to some (again, who?) and
deny it to others (who and why)? How do various macro- and microstructures funnel
or constrain possibilities of “subjective” and “objective” representation?
With respect to challenging and potentially unseating existing power hierarchies,
we contend that even the best-intentioned researchers cannot simply “hand over”
power without addressing those macro- and microstructures that support, con-
strain, potentiate, or “impossibilize” user/survivor autonomy, control, and influ-
ence. Unfortunately, critical awareness of potentially problematic dynamics, as well
as those historical and cultural forces that shape and constrain collaboration and
inclusion, are only infrequently explicitly addressed in CMH. As we review in the
following section, this can lead to serious problems not just at a theoretical or ideo-
logical level, but far more practically.

Mainstream Contemporary Participatory Research

One obvious “solution” to the problem of the imbalance of power between mental
health service users/survivors and nonuser researchers, as noted in our historical
overview, lies in the implementation of various forms of participatory or “inclu-
sive” research. Although it is not our intention to minimize the importance of such
methodologies, we nevertheless remain concerned about the extent to which vari-
ous participatory approaches as conventionally practiced in CP and CMH settings
go far enough in equalizing or redistributing power and challenging the status
quo. Community psychologists such as Balcazar and colleagues (1997) have pro-
posed a “continuum” of PR ranging from minimal consultation to research leader-
ship. However, mental health PR, albeit with notable exceptions, is often heavily
weighted to the more “minimal” side of the spectrum. Thus, it is rare to find com-
munity participants involved in initial grant writing, in decision making regarding
research design, in either statistical or qualitative analysis, or in manuscript writ-
ing. In fact, even in the broader arena of international participatory research, con-
temporary critics such as Rahnema (1990) and Leal (2007) have underscored the
cooptation and deflection of PR’s originally radical commitment to profound social
change. As the language of “participation” and “empowerment” has become increas-
ingly more mainstream, the critical and even revolutionary edge that originally
defined these ideas has arguably been mostly lost.
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 357

Considering research in CP and CMH, then, we might return to some of our

Foucauldian-inspired “critical” questions and ask whether many contemporary par-
ticipatory projects in fact either truly “validate” user/survivor discourse or critically
challenge those cultural and academic beliefs that may reinforce its invalidation. For
instance, what are the implications of a PR project in which the academic publica-
tions that result do not include a single user/survivor “co-researcher” as a co-author?
Or even that include a merely “token” community co-author (e.g., a “co-author” not
actually involved in any way in the conceptualization and writing of the manuscript)?
How, that is, might such decisions in fact reinforce status quo assumptions about the
inability of community members to “speak” to researchers and policy makers or to
directly contribute to the “scientific” literature (i.e., without the scientific “mediation”
of sympathetic experts)? Likewise, how common is it for community co-researchers
to actually determine the nature of a given research project and not just propose
something that fits within the thematic structure that the academic researchers in
question have already proscribed? Why are issues of chief concern to nonacademic
activists (e.g., problems associated with labeling, criticisms of drug-centered care,
more radical treatment alternatives like Soteria House, and alternative epistemolo-
gies of madness and distress) all but absent from the scientific PR literature?
These questions are not merely rhetorical. Undoubtedly, no two PR projects are
alike, and community co-researchers may be empowered or disempowered in dif-
ferent ways even within the same project. Nevertheless, our concern remains that,
far too often, co-researchers or community members do not in fact have meaning-
ful influence over the production and dissemination of knowledge, not merely
because of academic researchers’ actions, but because of myriad macro- and micro-
cultural and institutional forces that constrain and proscribe those actions. Unless
this broader “ecology” of power is critically addressed and our largely inadequate
systems of treatment and conceptualizations of “mental illness” are explicitly chal-
lenged (as activists have demanded for decades), we believe that the transformative
goals of this volume will be impossible to fully realize.
In line with Rappaport’s (1977) observation that “the more solutions there are the
better,” we devote the remainder of the chapter to discussion of (a) community-based
research approaches that explicitly focus on community control and (b) the targeted
support and training of doctoral-level user/survivor researchers.

Two Strategies for Transformative Research

Approach One: Community-Owned Research
Potential for Transformative Change
Given our concerns about current participatory research praxis, we focus here on
the need for research that is based in, and genuinely controlled and owned by, the
358 Conclusion

community. Following critics like Leal (2007), we do not argue for a new paradigm
so much as for a return to participation as originally conceived by the international
founders of participatory action research (PAR). With respect to our own criti-
cisms of much existing participatory research, we argue that truly emancipatory
user/survivor involvement must not merely “involve” the community, but also
should be connected to the broader social transformation struggles of the user/
survivor/ex-patient movement through community ownership. We begin by mak-
ing a case for the transformative potential and unique contribution of research that
emphasizes community control and then proceed with a brief discussion of cur-
rent and potential barriers to more widespread implementation.
The liberatory potential of PAR, as articulated by its founders (Fals-Borda, 1979;
1987; Freire, 1982; Hall, 1992) is contingent on the relationships among research,
education, and action; the belief, that is, that research should not be treated as a sep-
arate domain of action and knowledge but rather integrated into the development
and consciousness-raising activities of the community in its own efforts toward lib-
eration. This requires that community research with liberatory aims be genuinely
based in and owned by the community.
We raise the issue of ownership specifically, given that, as our earlier critique
of mainstream PR suggests, most such efforts are in fact “owned” by the univer-
sity; university-based researchers almost invariably initiate and write grant pro-
posals, choose the research topics and which organization to partner with, who
to hire, how much to pay who for what, what subprojects to fund, and so forth.
Whereas buzzwords like empowerment and emancipation are often used in such
contexts, critics have argued that PR instead often covertly functions to increase
academic “power” and influence through the cooptation and dilution of more
radical community critiques (Beresford, 2002; Leal, 2007; Rahnema, 1990;
Shaw, 2000; Sweeney, 2009). Researchers who undertake PR can also claim
greater ecological or construct validity by emphasizing that “their” research now
more closely reflects the interests of the population in question, a move that
undoubtedly often benefits the researcher more than the community. Incentives
inherent in the political economy of the academy further support such practices
by forcing even well-intentioned researchers to focus on the exigencies of aca-
demic publication, individual funding, tenure, and so forth rather than acting in
line with the objectives of the community (Hall, 1992). Community members
and researchers, in contrast, are far more likely to owe primary allegiance to their
peer constituencies.
One example of a contemporary alternative to mainstream PR, although
arguably fully in line with the original goals of international PAR, is community
owned and managed research (COMR). Originally developed by the West End
Revitalization Association, a (non–mental health-related) community-based
organization in Mebane, North Carolina, COMR was explicitly conceived
to address some of the shortcomings of “university-owned” but nominally
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 359

“community-based” research (Heaney, Wilson, & Wilson, 2007). The developers

of COMR have explicitly sought to return power to the community by utilizing
community-based ethical review boards rather than academic institutional review
boards, ensuring that community leaders, via community-based organizations,
rather than academic researchers serve as the designated primary investigators
on any research grants and maintain hiring and firing power over technical con-
sultants. In addition, decisions regarding the dissemination of research findings
truly belong to the community organization:  they choose what to disseminate,
when and how.

Alignment with the User/Survivor Movement

With respect to user/survivor research more generally, we contend that community-
owned research closely aligns with the user/survivor movement’s foundational
emphasis on autonomy, independence, and self-determination (e.g., Chamberlin,
1982). Indeed, community-owned user/survivor research might be seen as the
replication or mirroring of peer-run and peer-led values and structures—more
commonly found in direct service provision—in the context of research. Although
existing barriers should not be underestimated, community-owned user/survi-
vor research holds the potential of facilitating the exploration of and generation
of knowledge about true alternatives to the mainstream mental health system, as
well as alternative conceptualizations of mental illness. Furthermore, when imple-
mented in the context of an already operational community organization, such as a
consumer-run organization, the community members involved are far more likely
to work as paid team members rather than as temporary contractors (beholden to
academic administrators) or even volunteers. Both the practical and symbolic sig-
nificance of such shifts is worth emphasizing.
Community-owned research thus offers transformative potential to the research
enterprise that underpins CMH inasmuch as it would theoretically result in a
far more genuine shift in power relationships between professional researchers
and users/survivors. Moreover, it would embed research within the transforma-
tive work of the user/survivor community. Community ownership of research
further challenges assumptions underlying current research practices as to who
can conduct research, and it exposes the underlying “ownership” of traditional
university-owned community-based research, which is often not made explicit. In
addition, community-owned research significantly disturbs the notion that intel-
lectual spaces can only be found within the academy. Although potential resis-
tance on the part of policy makers, academics, and even the general public should
not be underestimated (see the Mental Health Exemplar below), the potential of
community-owned research to challenge these norms and thereby contribute to
a more genuine ecological transformation of the mental health service–research
complex seems undeniable.
360 Conclusion

Mental Health Exemplar

The iterative process of action and research in community-owned user/survivor
research is exemplified by the Second Opinion Society (SOS) in the Yukon ter-
ritory of Canada, a user-run alternative to psychiatry. In response to the group’s
early activism regarding a planned housing project, the Yukon Ministry of Health
supported the SOS’s goal to conduct an independent participatory needs assess-
ment with psychiatric survivors. The results of this research led to funding from
the territorial government to establish a drop-in and resource center (Sartori,
2007). The work was nevertheless not without challenges. In addition to consum-
ing much of the time and energy of the organization, individuals in the social
services and medical sectors criticized and opposed the project. The local medical
council, for instance, wrote letters to the editor decrying the “danger” of letting
psychiatric survivors conduct research, and the local Mental Health Services cen-
ter refused to participate (Sartori, 1997). In spite of this opposition, the needs
assessment was ultimately a substantial success, lending credibility to the then
fledgling SOS. Eventually, the Canadian Department of Health Promotion recog-
nized the study as one of the best PR projects conducted in Canada (Wallcraft &
Nettle, 2009).

Barriers
As our discussion of power has foregrounded and the example of SOS underscores,
in spite of its enormous potential, there remain considerable ideological and struc-
tural barriers to actualizing community-based research projects that are truly owned
by users/survivors.
First, as emphasized in our discussion of power, policy makers, funders, and
the general public alike may not view “uncredentialed” community members
as “legitimate” purveyors of science (Armstrong, 1980), leading to a political
milieu in which user/survivor community research must struggle for acceptance.
Furthermore, the internal capacity of a community organization to undertake the
research it deems important may be a substantial barrier to the successful imple-
mentation of community-owned research. Although a successful community
organization may be able to hire trained consultants to carry out particular tasks,
such as statistical analysis, if internal members do not have sufficient background
to appreciate the implications of various choices or strategies, their technical con-
trol over consultants’ decisions may not be truly meaningful. At many stages, the
potential for relationships between community owners and hired researchers to
replicate the power dynamics of university-owned research remains. Thus, if user/
survivor community-owned research is to truly represent a liberating alternative
to university research ownership, then attention to relationships with external
researchers must be coupled with the ongoing development of internal research
capacity.
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 361

A further barrier to community-owned research lies in restrictions attached to

various funding sources. Currently, many research-based private and public fund-
ing agencies will not allow community researchers without specific credentials
and/or affiliations to directly apply for grants. Even when such restrictions are
not made explicit, community organizations may not have the “right” connec-
tions, credibility, or background knowledge of funding priorities and agendas.
Indeed, in many cases, community-owned research initiatives may be perceived
as explicitly threatening by traditional program officers and scientific review com-
mittee members precisely because they threaten the more exclusive authority of
traditional experts.
In addition, it is worth remembering that the resources of research-intensive
universities are often considerable. These resources include accounting, technical
support, access to journals and software, grant-writing assistance, “free” consulting
from other academic departments, and so on. From this perspective, the viability of
community-owned research may depend in part on a larger public dialogue about
access to past research (i.e., “public access”), as well as the responsibility of pub-
licly or governmentally funded universities to more freely provide certain services
to research-oriented community organizations. An alternate possibility would be
the government funding of independent community-run technical assistance cen-
ters (specifically aimed at supporting community-owned research), such as those
already in place in the United States and directed toward assistance with the devel-
opment of consumer-run service organizations.
Finally, a more democratic approach to research potentially entails additional
relational issues that may need to be explicitly and proactively addressed. These
include not only relationships between community members and academic con-
sultants, but also between community members and organizational leaders. In con-
trast to academia, in which decision-making hierarchies are often relatively clear
cut, horizontal (and hence more ambiguous) relationships may be more common
in community settings. In addition, the range of educational backgrounds, cognitive
disabilities, and intersecting, marginalized identities present in many consumer-run
organizations raise important but difficult questions about inclusion, representa-
tion, and control as they play out across the spectrum of disability, class, race, and
sexuality.

Approach Two: Supporting Academic User/Survivor Researchers

Where community-owned research holds the potential to recentralize knowledge
production in the community, the targeted support and training of doctoral-level
researchers capitalizes instead on the potential of transforming academic research
from within. As in the last section, we begin by making a case for the value and
importance of academic training and then discuss some of the persistent practical
barriers that need to be addressed in order to mainstream such practices.
362 Conclusion

Transformative Potential
It is almost a truism that research in many areas, particularly quantitative research,
requires advanced training in statistics, design, and methodology. Technical skills,
however tricky they are to define and deconstruct in the context of complex power/
knowledge relations, remain a practical necessity for most projects. So long as
would-be user/survivor researchers do not possess these skills, it seems legitimate
to worry that they will be able to exercise very little “real” power, much less be mean-
ingfully involved, in any number of decisions and analyses crucial to research design,
analysis, and interpretation. Given the relative privilege and position of quantitative
work in psychology, a weak user/survivor presence in quantitative research may
also help reinforce the stereotype that user/survivor research projects are “soft”
or “subjective,” and this arguably detracts from user/survivors’ ability to critically
examine complicated statistically based work.
Although some user/survivor researchers in the United Kingdom have explicitly
criticized the Cochrane hierarchy of evidence and other frameworks that empha-
size randomization, control, and quantitative analysis (e.g., Beresford, 2006),
mirroring broader social science debates concerning the legitimacy of quantita-
tive versus qualitative methodologies, others have experimented with novel par-
ticipatory quantitative and mixed methods approaches (Rose, Evans, Sweeney, &
Wykes, 2011; Tew et al., 2006). Returning to Foucault, we ground our own call for
increased quantitative academic training in the belief that the reverse “cooptation”
and radical reconfiguration of “the master’s tools” can in fact be a highly effective
means of navigating and affecting complex power-knowledge relations. Within CP,
for example, Rapkin, Trickett, and colleagues (e.g., Jensen, Hoagwood, & Trickett,
1999; Rapkin & Trickett, 2005; Trickett, 2009; see also West et al., 2008) have used
an “insider’s knowledge” of quantitative evaluation and randomized controlled tri-
als (RCTs) to construct far more progressive and ecologically sensitive alternatives
to the RCT, such as the “comprehensive dynamic trial.” Rather than viewing the
quantitative side of community research as somehow inherently flawed, then, we
contend that more traditionally empiricist domains are in fact ripe for creative and
radical work.
In addition to the importance of academic training with respect to various
technical skills, we also note the common requirement, at least in some regional
contexts, that primary investigators possess doctorates and/or maintain certain
types of institutional affiliations. Thus, without appropriate training, credentials,
and affiliations, users/survivors may simply be excluded a priori from entire
domains of funding, dissemination, and advancement. Furthermore, although
community-based organizations may engage in occasional research or evaluation
projects, universities and research institutes remain one of the few bases for ongo-
ing intensive research, with supports that are rarely matched outside government
and academia.
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 363

With respect to the benefit of academic user/survivor researchers within specific

institutional settings, we emphasize the potential for such individuals to challenge
ableist assumptions among colleagues and the general public, as well as to occupy
positions in which they may exert considerable control over admissions, training,
mentorship, and, ultimately, decisions regarding the tenure and advancement of
junior colleagues. The importance of user/survivor academics in such settings—
individuals who will presumably attract, support, and advocate for user/survivor
mentees as well as junior colleagues—should not be underemphasized. In some
of our own ongoing research postsecondary students with psychiatric disabilities
queried about their experiences in school have bemoaned the absence of visible,
disclosed user/survivor faculty or mentors and emphasize the difference they think
such figures would make. Given the documented importance of same-group minor-
ity mentorship for women and students of color (Bronstein, 1993; Brown, Davis, &
McClendon, 1999; Padilla, 1994; Society for Research in Child Development,
2006), such wishes are clearly well-founded. Researchers with psychiatric disabili-
ties may be able to provide crucial advice with respect to issues of disclosure and
effective academic accommodations in the context of both research and teaching.
Finally, with respect to the larger user/survivor community, we presume that
many academic user/survivor researchers will have greater—and qualitatively dif-
ferent—knowledge of and access to users/survivors and relevant issues. Qualitative
research on community co-researchers in the United Kingdom, for example, sug-
gests that user/survivor interviewers may have an easier time establishing rap-
port with interviewees and be more likely to elicit honest responses (Williamson,
Brogden, Jones,  & Ryan, 2010); that user/survivor data analysts are both better
able to identify those themes and findings that are most relevant and sensitive with
respect to user/survivors’ priorities and more likely to question nonuser assump-
tions (Rose, 2004; Ross et  al., 2005); and that user/survivors often increase the
effectiveness of community dissemination, as well as community perceptions of
trustworthiness (Barnard et al., 2005). Presumably, fully trained and empowered
researchers are able to exert even more control in many of these areas—increas-
ing rapport, facilitating other types of PR, and speaking with the credibility of an
in-group member to other users/survivors.

Exemplar
As an example of user/survivor research, we chose to highlight the work of
the Service User Research Enterprise (SURE) located within the Institute
of Psychiatry (IoP) at King’s College, London. Launched in 2001, SURE was
created as a center for user/survivor academic training and research and cur-
rently boasts an impressive list of publications and large-scale research projects
(see Rose, 2009). SURE explicitly recruits and trains user/survivor doctoral
students, and three users have graduated with PhDs to date (Rose, personal
364 Conclusion

communication, April 28, 2012). Dr. Rose, co-director of the Enterprise, empha-

sizes that one of the most important ways in which SURE supports user/survi-
vor researchers is simply through ensuring a “critical mass” of individuals with
psychiatric disabilities who can support one another (as well as facilitate the
careful mentorship of junior scholars by senior user/survivor researchers such as
Dr. Rose). Additionally, she notes that the presence of SURE within the IoP has,
at least in some cases, helped persuade more traditional colleagues of the value
and rigor of user/survivor research and has opened up the possibility of teaching
user/survivor courses or modules to a broad range of students. In her leadership
capacity with the Enterprise, Dr. Rose has also been able to serve on a variety of
additional academic and policy committees and speak in a variety of academic
venues, thereby slowly but surely injecting alternative survivor discourses into
the existing research infrastructure.

Barriers
The many practical academic barriers currently facing students with significant
psychiatric disabilities are equally important to understanding the potential of
this method for increasing user/survivor control in research. From an empirical
standpoint, stigma at the doctoral and postdoctoral level has not been adequately
assessed, but our own experiences and those of our colleagues and contacts, includ-
ing undisclosed junior faculty, suggest that stigmatizing attitudes remain common-
place in mental health research settings. This is certainly true at the undergraduate
level, as multiple qualitative studies suggest (Demery, Thirlaway, & Mercer, 2012;
Knis-Matthews, Bokara, DeMeo, Lepore,  & Mavus, 2007; Megivern, 2001;
Megivern, Pellerito,  & Mowbray, 2003; Salzer, Wick,  & Rogers, 2008; Weiner  &
Wiener, 1996). In the context of doctoral admissions, the only published article to
have tackled disclosure during the psychology applications process in the United
States concluded that revealing a psychiatric disorder is widely considered a “kiss
of death” by chairs of graduate admissions committees (Appleby & Appleby, 2006).
On the flip side, although SURE in the United Kingdom explicitly recruits and
supports user/survivor doctoral students (as described earlier), we are not aware
of any explicit efforts made by particular academic departments or institutions in
our countries of origin to seek out promising graduate user/survivor researchers,
although the Yale Program for Community Recovery and Health and the Centre
for the Study of Gender, Social Inequities, and Mental Health at Simon Fraser
University have made exceptional efforts to include user/survivor postdocs and
junior researchers.
Academic accommodation in the context of doctoral work is another area that
has unfortunately received little empirical attention. Although extensions and
flexibility may be common at the undergraduate level, finding “flexibility” in a
doctoral program is often extraordinarily challenging and potentially involves
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 365

course instructors as well as advisors, research supervisors, practicum supervi-

sors, other graduate students, and community or governmental partners. Some
difficulties (e.g., frequent commenting voices or hallucinations, or more pro-
nounced memory problems or medication side effects) may require considerable
creativity to work around and ongoing willingness and commitment on the part
of faculty and administrators to engage with students. Affected students, further-
more, must constantly agonize over the trade-offs between disclosing and risk-
ing being perceived as “not capable of a competitive research career” or suffering
in silence—an often torturous internal process that Goffman (1986) analyzed at
length. On the other hand, students may be implicitly or explicitly encouraged to
“pass”; ironically, the better a given student is at hiding her or his problems, the
easier it is for faculty and other department members to simply forget that she or
he has a disability at all.
Although the presence of mentors or role models (i.e., senior researchers who
have navigated these same issues and succeeded in spite of them) would likely be
extraordinarily valuable, such individuals, or at least those who are public enough
about their disabilities to be identifiable, are few and far between. Although many of
these challenges have been noted with respect to underrepresented ethnic minority
groups and efforts have been made on many fronts to promote diversity and inclu-
sion and provide supplemental diversity-based training and fellowship opportuni-
ties and targeted mentorship (see, e.g., the American Psychological Association’s
Diversity Fellowship program), such efforts remain extremely rare in the context of
“serious mental illness.”
A final barrier is the isolation and alienation many users/survivors may experi-
ence in doctoral social science training programs. Clinical coursework on psychopa-
thology, for example, may emphasize deficit-based models of “mental disorder,” and
seminars on prevention may explicitly target “mental illnesses” as phenomena to be
eliminated (as, e.g., Prilleltensky [2008] recommends). For students who experi-
ence madness as a fundamental component of their identity, such implicit values
may lead to feelings of profound marginalization. These experiences of isolation and
alienation may be further compounded by the exclusion of madness, and disabil-
ity more generally, from both diversity coursework and departmental pro-diversity
initiatives.
In summary, the barriers facing user/survivor graduate trainees remain con-
siderable. Although there are notable (disclosed and undisclosed) user/survivor
researchers (even outside the United Kingdom) who have contributed significantly
to the mental health research literature, these individuals mostly remain exceptions
that prove the rule. Although the existence of the four of us, as well as this chapter,
suggests that things are slowly changing, we all hope that commitments to meaning-
ful inclusion by academic researchers and departments will improve the opportuni-
ties and experiences for the next generations and that future user/survivor graduate
students will not have to struggle quite as much as we have.
366 Conclusion

Conclusion
Reflections Specific to Community Psychology
In an effort to speak to as wide an audience as possible, we have thus far limited our
reflections to CMH in general. Before concluding, however, we want to make some
more pointed comments specific to the subfield of CP.
Although CP first developed as a response to deinstitutionalization and the need
to develop community-based alternatives to institutional care (Anderson et  al.,
1966; Ornelas, 2008), CP researchers have gradually moved increasing farther away
from this early focus on “serious mental illness” and CMH. Despite CP affirmation
of the values of empowerment, inclusion, and social justice (see Chapters 1 and 2
of this volume), a critical eye shows that the field has stagnated in a certain type of
language and an arguably limited vision of what a CP approach to mental health
might look like. Thus, in an unpublished critical content analysis of the (primarily
North American) CP literature, we found an almost ubiquitous use of the implic-
itly biomedical language of “serious mental illness” (typically unqualified), little
participatory research (overall), no examples of CP user/survivor-led research or
discourse, and few articles that explicitly challenged mainstream psychiatric etiol-
ogy, epidemiology, nosology, or drug-centered systems of care ( Jones, Gutierrez, &
Keys, unpublished research).
Although many factors have undoubtedly contributed to the current state of psy-
chiatric disability research in CP, one key contributing factor is arguably the field’s
historic turn from intervention to prevention, an approach stemming from CP’s
commitment to de-emphasizing individual-level interventions (Rappaport, 1981;
1987). A prevention focus, however, risks reifying the pathologization of madness
(whether as an individual or social phenomena), as well as moving attention away
from the empowerment and self-determination of individuals with existing psychi-
atric disabilities. The European Hearing Voices movement (see Intervoice, n.d.)
provides an illustrative counterexample of an approach simultaneously emphasiz-
ing community participation, empowerment, and mutual aid alongside critical phe-
nomenological, nosological, and epidemiological work (Romme, Escher, Dillon,
Corstens, & Morris, 2009). In addition, the Hearing Voices movement has contrib-
uted to the development of alternative strengths-based individual approaches such
as the Maastricht Approach to voice-hearing (Corstens, Escher, & Romme, 2008).
In addition, although Rappaport (1987) emphasized the exigency of examining
implicit ideological assumptions and developing rigorous theory rather than uncrit-
ically borrowing ideas from other fields and disciplines, little new theory specific to
madness has developed within CP. With the exception of some of Morrison’s criti-
cal work in the late ‘70s and early ‘80s (Morrison, 1976; Morrison & Becker, 1975;
Nevid & Morrison, 1980), as well as contemporary efforts by select critical com-
munity psychologists (mostly outside the United States), community psychologists
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 367

have largely failed to generate alternative epistemologies of disability and madness

or to directly challenge status quo systems of drug-centered care. Discussions of
the more far-reaching implications of the recovery movement, or the pitfalls of the
continued biomedicalization and clinicalization of psychiatric issues, are noticeably
absent from CP discourse.
We thus urge community psychologists to more critically reflect on some of the
pronounced shortcomings of CP research on “serious mental illness,” the contin-
ued lack of inclusion of doctoral-level user/survivor researchers in the field, and the
disconnect from promising developments associated with critical psychology and
the user/survivor researcher movement. We also hope that we, as a field, can collec-
tively recover the sense of urgency that Rappaport (1977; 1981; 1987) repeatedly
referred to as the fuel of radical social change.

Questions and Suggestions

Although the major goal of this chapter has been to emphasize the exigency of
increased user/survivor-controlled research in both the academy and the commu-
nity, we want to conclude with some suggestions and reflections regarding the role
and responsibilities of nonuser researchers. Clearly enough, our belief is that the
current underrepresentation of user/survivor university- and community-based
research initiatives is deeply problematic. At the same time, we readily acknowledge
that nonuser researchers can be valuable allies and partners, as well as effective and
innovative independent mental health investigators. Nevertheless, we remain com-
mitted to a critical position that holds that, all too often, CMH researchers are not
making the efforts that they might to more fully include and support users/survi-
vors and challenge the status quo. We thus recommend that researchers consider
the following guiding questions in evaluating their field, their own work, and their
relationships with users/survivors:

1. First and foremost, are critical questions being asked in the context of mental
health research projects and publications with respect to the use of potentially
pathologizing language; consideration of academic and nonacademic user/sur-
vivor perspectives; the inclusion or exclusion of ideological perspectives that
either challenge or reinforce the status quo (including biomedical models of and
approaches to mental health); and consideration of the consequences of various
linguistic, methodological, and practical choices? Similarly, are the implications
of research decisions regarding co-authorship, control, and level of involvement
being explicitly thought through?
2. To what extent does (one’s own) current research involve or encourage user/
survivor capacity building, both internally (i.e., in graduate programs) and
externally (in the community)? What is, or could, one be doing to help facilitate
368 Conclusion

the development of the skills and expertise necessary to carry out various types
of rigorous research by users/survivors?
3. To what extent does one’s own doctoral or postdoctoral training program explic-
itly target and provide support for user/survivor doctoral students and junior
researchers? Are barriers such as inadequate accommodations, institutional dis-
crimination, and departmental stigma openly acknowledged and challenged?
Are proactive policy measures (such as protected disability or medical leave) in
place that would help students with psychiatric disabilities flourish?
4. To what extent is one invested in promoting independent community-owned
research in addition to university-based projects in which one serves as a pri-
mary investigator? Is one willing to take a “back seat” and let community mem-
bers decide what questions to ask and what methodologies to utilize? If not, why
not—what might make it so difficult to actually give up control? What forces,
for instance—cultural beliefs, public attitudes—might be making it so difficult
to suspend the default assumption that “the expert knows best”?

To briefly return to our discussion of power, then, the fundamentally rela-

tional nature of the latter means that the renegotiation of hierarchies must always
involve multiple stakeholders. Users/survivors can only speak with authority if
traditional researchers, policy makers, and members of the general public come to
agree that systems change must be guided both by the lived experience of disabil-
ity and recovery and through the ongoing critical questioning of often unspoken
assumptions about power, truth, and science. Thus, it is not a matter of simply
promoting any research led by any individuals with a psychiatric diagnosis, but
rather of critically engaging with the complexity of users/survivors’ experiences,
as well as ideological tensions and contradictions within the user/survivor move-
ment. If we look at discourse circulating in user/survivor communities right now,
for example, we find a literature rich with transformative ideas—from the Hearing
Voices movement’s claims that voice hearing is simply a valuable “human varia-
tion” to user/survivor-led articulations of the causal role of trauma and a range
of peer support groups that treat “symptoms” as meaningful human experiences.
These ideas can at times contradict one another, but they all speak to a very dif-
ferent understanding of “mental illness” from that currently dominant in the aca-
demic literature.
Cooptation, undoubtedly, is not only inevitable but has accompanied efforts
aimed at more radical change from the early days of the user/survivor movement
(see, e.g., Chamberlin’s [1982] introduction to the British re-issue of On Our
Own). Likewise, not every user/survivor is interested in participating in radical
or revolutionary knowledge production, nor will transformative change be insti-
gated by the presence of a few token user/survivor researchers. What we advocate
instead is a systemwide effort to open academic and research discourse up to the
full range of user/survivor perspectives and to embrace the challenge of competing
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 369

conceptualizations and epistemologies of madness. Taken seriously, we believe,

such practices will transform the status quo.

Notes
1. The term “user/survivor” is used throughout this chapter to connote individuals who may
identify rhetorically in various ways with the lived experience of mental health issues and/or
the mental health system. Respecting people’s chosen language is a hallmark characteristic of
the user/survivor/ex-patient movement because the power of institutional language to mar-
ginalize diverse mental states is a central organizing tenet of the movement. However, for the
sake of consistency and brevity the term “user/survivor” will be used throughout this chapter
with the exception of instances where individuals are directly quoted. It is also important to
acknowledge the diversity within this community and avoid any attempts to see “users/survi-
vors” as a monolithic category that erases the intersectionality of oppression experienced by
its members.
2. We want to underscore that, given the diversity and heterogeneity among individuals with
psychiatric disabilities and intersections with other marginalized identities, we cannot claim
to represent all possible perspectives.
3. A  recent and promising exception is the Lived Experience Research Network See www.
LERNetwork.org.

References
Anderson, L.  S., Cooper, S., Hassol, L., Klein, D.  C., Rosenblum, G.,  & Bennett, C.  C. (1966).
Community psychology: A report of the Boston Conference on the Education of Psychologists for
Community Mental Health. Boston, MA:  Boston University  & Quincy Mass. South Shore
Mental Health Center.
Appleby, D. C., & Appleby, K. M. (2006). Kisses of death in the graduate school application process.
Teaching of Psychology, 33(1), 19–24.
Armstrong, J. S. (1980). Unintelligible management research and academic prestige. Interfaces, 10,
80–86.
Balcazar, F. E., Taylor, R. R., Kielhofner, G. W., Tamley, K., Benziger, T., Carlin, N., & Johnson, S.
(1997). Participatory action research: General principles and a study with a chronic health
condition. In L. A. Jason, C. B. Keys, Y. Suarez-Balcazar, R. R. Taylor, & M. I. Davis (Eds.),
Participatory community research:  Theories and methods in action (pp. 17–35). Washington,
DC: American Psychological Association.
Barnard, A., Carter, M., Britten, N., Putell, R., Wyatt, K.,  & Ellis, A. (2005). The PC11 report.
An evaluation of consumer involvement in the London primary care studies programme. Exeter,
England: Peninsula Medical School.
Beresford, P. (2002). User involvement in research and evaluation: Liberation or regulation? Social
Policy & Society, 1(2), 95–105.
Beresford, P. (2006). A service-user perspective on evidence. In M. Slade,  & S. Priebe (Eds.),
Choosing methods in mental health research: Mental health research from theory to practice (pp.
223–230). New York: Routledge/Taylor & Francis Group.
Beresford, P. (2009). Control. In J. Wallcraft, B. Schrank, & M. Amering (Eds.), Handbook of service
user involvement in mental health research (pp. 181–197). West Sussex, UK: Wiley-Blackwell.
Beresford, P., & Evans, C. (1999). Research and empowerment. British Journal of Social Work, 29,
671–677.
370 Conclusion

Byrd, G. S., Edwards, C. L., Kelkar, V. A., Phillips, R. G., Byrd, J. R., Pim-Pong, D., . . . & Pericak-Vance,
M. (2011). Recruiting intergenerational African American males for biomedical research
studies: A major research challenge. Journal of the National Medical Association, 103(6), 55–56.
Brown II, M., Davis, G. L., & McClendon, S. A. (1999). Mentoring graduate students of color: Myths,
models, and modes. Peabody Journal of Education, 74(2), 105–118.
Bronstein, P. (1993). Challenges, rewards, and costs for feminist and ethnic minority scholars.
In J. Gainen & R. Boice (Eds.), Building a diverse faculty (pp. 61–70). San Francisco, CA:
Jossey-Bass.
Chamberlin, J. (1982). On our own. London: MIND.
Corstens, D., Escher, S., & Romme, M. (2008). Accepting and working with voices: The Maastricht
approach. In A. Moskowitz, I. Schäfer, & M. J. Dorahy (Eds.), Psychosis, trauma and dissocia-
tion: Emerging perspectives on severe psychopathology (pp. 319–332). London: Wiley-Blackwell.
Demery, R., Thirlaway, K., & Mercer, J. (2012). The experiences of university students with a mood
disorder. Disability & Society, 27(4), 519–533.
Fals-Borda, O. (1979). The problem of investigating reality in order to transform it. Dialectical
Anthropology, 4(1), 33–56.
Fals-Borda, O. (1987). The application of participatory action research in Latin America.
International Sociology, 2(4), 329–347.
Fals-Borda, O. (2006). The North-South convergence: A 30-year first-person assessment of PAR.
Action Research, 4(3), 351–358.
Fals-Borda, O. (2008). The application of the social sciences’ contemporary issues to work on par-
ticipatory action research. Human Organization, 67(4), 359–361.
Faulkner, A., & Thomas, P. (2002). User-led research and evidence-based medicine. British Journal
of Psychiatry, 180(1), 1–3.
Foucault, M. (1972). The archaeology of knowledge. New York: Random House.
Foucault, M. (1977). Discipline and punish: The birth of the prison. New York: Random House.
Foucault, M. (1980). Power/knowledge:  Selected interviews and other writings, 1972–1977.
New York: Vintage.
Freire P. (1982). Creating alternative research methods: Learning to do it by doing it. In B. Hall,
A. Gillette, & R. Tandon (Eds.). Creating knowledge: A monopoly? Participatory research in devel-
opment (pp. 29–37). New Delhi: Society for Participatory Research in Asia.
Goffman, E. (1986). Stigma: Notes on the management of spoiled identity. New York: Touchstone.
Hall, B. L. (1992). From margins to center? The development and purpose of participatory research.
American Sociologist, 23(4), 15–28.
Heaney, C. D., Wilson, S. M., & Wilson, O. R. (2007). The West End Revitalization Association’s
community-owned and -managed research model:  Development, implementation, and
action. Progress in Community Health Partnerships:  Research, Education, and Action, 1(4),
339–349.
Intervoice. (n.d.). Homepage. Retrieved from www.intervoiceonline.org/
Jensen, P. S., Hoagwood, K., & Trickett, E. J. (1999). Ivory towers or earthen trenches? Community
collaborations to foster real-world research. Applied Developmental Science, 3(4), 206–212.
Jones, N., Guttierrez, R. & Keys, C. (unpublished research). Comprehensive analysis of the treat-
ment of psychiatric disabilities in the Journal of Community Psychology and the American
Journal of Community Psychology since 1972.
Knis-Matthews, L., Bokara, J., DeMeo, L., Lepore, N., & Mavus, L. (2007). The meaning of higher
education for people diagnosed with a mental illness: Four students share their experiences.
Psychiatric Rehabilitation Journal, 3(2), 107–114.
Leal, P. A. (2007). Participation: The ascendancy of a buzzword in the neo-liberal era. Development
in Practice, 17(4/5), 539–548.
Megivern, D. (2001). Educational functioning and college integration of students with mental
illness:  Examining the roles of psychiatric symptomatology and mental health service use.
Dissertation Abstracts International, 62(10), 3574.
 Trans for ming R e s earch for Trans for mative Chang e in Me ntal Health 371

Megivern, D., Pellerito, S., & Mowbray, C. (2003). Barriers to higher education for individuals with
psychiatric disabilities. Psychiatric Rehabilitation Journal, 26(3), 217–231.
Morrison, J.  K. (1976). Demythologizing mental patients’ attitudes toward mental illness:  An
empirical study. Journal of Community Psychology, 4(2), 181–185.
Morrison, J. K., & Becker, R. E. (1975). Seminar-induced change in a community psychiatric team’s
reported attitudes toward ‘mental illness’. Journal of Community Psychology, 3(3), 281–284.
Nevid, J. S., & Morrison, J. (1980). Attitudes toward mental illness: The construction of the libertar-
ian mental health ideology scale. Journal of Humanistic Psychology, 20(2), 71–85.
Ornelas, J. (2008). Psicologia comunitária. Lisboa, PT: Fim de Século.
Padilla, A. (1994). Ethnic minority scholars, research, and mentoring: Current and future issues.
Educational Researcher, 23(4), 24–27.
Prilleltensky, I. (2008). The role of power in wellness, oppression, and liberation: The promise of
psychopolitical validity. Journal of Community Psychology, 36(2), 116–136.
United States Senate Subcommittee on Health. (1973). Quality of health care in human experimenta-
tion. Washington, DC: US Government Printing Office.
Rahnema, M. (1990). Participatory action research: The “last temptation of saint” development.
Alternatives: Global, Local, Political, 15(2), 199–226.
Rapkin, B. D., & Trickett, E. J. (2005). Comprehensive dynamic trial designs for behavioral preven-
tion research with communities: Overcoming inadequacies of the randomized controlled trial
paradigm. In E. J. Trickett & W. Pequegnat (Eds.), Community interventions and AIDS (pp.
249–277). New York: Oxford University Press.
Rappaport, J. (1977). Community psychology: Values, research and action. New York: Holt, Rinehart &
Winston.
Rappaport, J. (1981). In praise of paradox:  A  social policy of empowerment over prevention.
American Journal of Community Psychology, 9(1), 1–25.
Rappaport, J. (1987). Terms of empowerment/exemplars of prevention: Toward a theory for com-
munity psychology. American Journal of Community Psychology, 15(2), 121–148.
Romme, M., Escher, S., Dillon, J., Corstens, D., & Morris, M. (2009). Living with voices: 50 stories of
recovery. Ross-on-Wye, UK: PCCS Books.
Rose, D. (2004). Telling different stories: User involvement in mental health research. Research and
Policy Planning, 22, 23–30.
Rose, D. (2009). Collaboration. In J. Wallcraft, B. Schrank, & M. Amering (Eds.), Handbook of service
user involvement in mental health research (pp. 169–179). West Sussex, UK: Wiley-Blackwell.
Rose, D., Evans, J., Sweeney, A., & Wykes, T. (2011). A model for developing outcome measures
from the perspectives of mental health service users. International Review of Psychiatry, 23(1),
41–46.
Rose, D., Thornicroft, G., & Slade, M. (2006). Who decides what evidence is? Developing a mul-
tiple perspectives paradigm in mental health. Acta Psychiatrica Scandinavica, 113(Suppl 429),
109–114.
Ross, F., Donovan, S., Brearley, S., Victor, C., Cottee, M., Crowther, P., & Clark, E. (2005). Involving
older people in research: Methodological issues. Health & Social Care in the Community, 13,
268–275.
Russo, J. (2012). Survivor-controlled research:  A  new foundation for thinking about psychiatry
and mental health. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 13.
Retrieved from http://nbn-resolving.de/urn:nbn:de:0114-fqs120187
Salzer, M.  S., Wick, L.,  & Rogers, J. (2008). Familiarity and use of accommodations and sup-
ports among postsecondary students with mental illnesses:  Results from a national survey.
Psychiatric Services, 59, 370–375.
Sartori, G. (1997). Commentary. In I. Shimrat (Ed.), Call me crazy: Stories from the mad movement
(pp. 124–137). Vancouver, Canada: Press Gang.
Sartori, G. (2007). Second opinion society:  Without psychiatry in the Yukon. In P. Statsny,  &
P. Lehmann (Eds.), Alternatives beyond psychiatry (pp. 199–209). Berlin: Peter Lehmann.
372 Conclusion

Shaw, I. (2000). Just inquiry? Research and evaluation for service users. In H. Kemshall,  &
R.  Littlechild (Eds.), User involvement and participation in social care (pp. 29–44).
London: Jessica Kingsley.
Society for Research in Child Development. (2006). Affirming future generations of ethnic minor-
ity scientists. Monographs of the Society for Research in Child Development, 71(1), 188–192.
Sweeney, A. (2009). So what is survivor research? In A. Sweeney, P. Beresford, A. Faulkner, M.
Nettle, & D. Rose. (Eds.), This is survivor research (pp. 22–37). Ross-on-Wye, England: PCCS
Books.
Sweeney, A., Beresford, P., Faulkner, A., Nettle, M.,  & Rose, D. (Eds.). (2009). This is survivor
research. Ross-on-Wye: PCCS Books.
Tew, J., Gould, N., Abankwa, D., Barnes, H., Beresford, P., Carr, S. . . . & Woodward, L. (2006). Values
and methodologies for social research in mental health. London: National Institute for Mental
Health.
Trickett, E. J. (2009). Community psychology: Individuals and interventions in community con-
text. Annual Review of Psychology, 60, 395–419
Wallcraft, J.,  & Nettle, M. (2009). History, context and language. In J. Wallcraft, B. Schrank,  &
M. Amering (Eds.), Handbook of service user involvement in mental health research (pp. 1–11).
West Sussex, England: Wiley-Blackwell.
Weiner, E., & Wiener, J. (1996). Concerns and needs of university students with psychiatric dis-
abilities. Journal of Postsecondary Education and Disability, 12(1), 2–8.
West, S. G., Duan, N., Pequegnat, W., Gaist, P., Jarlais, D., Holtgrave, D., . . . & Mullen, P. (2008).
Alternatives to the randomized controlled trial. American Journal of Public Health, 98(8),
1359–1366.
Williamson, T., Brogden, E., Jones, E., & Ryan, J. (2010). Impact of public involvement in research
on quality of life and society:  A  case of research career trajectories. International Journal of
Consumer Studies, 34, 551–557.
 18

Transformative Change in Community

Mental Health
Synthesis and Future Directions

geoffrey nelson, bret kloos, and josé ornel as

In this final chapter, we review and synthesize what we have learned about under-
standing and creating transformative change in community mental health (CMH).
We end with some ideas for a future research and action agenda for transformative
change in CMH.

Understanding and Creating Transformative Change

As we reflect on the chapter authors’ experiences of creating transformative change
in practices, programs, and policies, we are struck with the realization that there
have long been individuals working to realize the goals of transformative change.
Although most of these examples have been isolated and localized, they demonstrate
that transformative change is possible, and they underline the promise of commu-
nity psychology theory and principles to inform these efforts. The projects reviewed
in this volume present different ways to understand goals for mental health work
and different ways that we might promote mental health. In this volume, we have
also sought to identify and articulate visions that can inform systematic efforts to
promote transformative change across levels of analysis for different stakeholders.
At this point, we need to develop a common vision for systematic transforma-
tive change. That is, we need shared markers that identify transformative change in
different contexts. We need to catalogue different pathways for advancing change.
We need to document how the values and principles of transformative change can
be achieved in different ways that are suitable to the resources and challenges of

373
374 Conclusion

different contexts; what might work well in urban centers of eastern North America
might require different strategies in other locales. Furthermore, nonurban, nonin-
dustrialized centers will have promising potential and resources that are relatively
rare or overlooked in urban centers. Although rural areas and some countries have
limited CMH infrastructure, these communities have different helping traditions,
a range of social support resources, and different understandings of mental health
challenges.
We suggest that a sustained effort to achieve transformative change is like a jour-
ney. It will require choosing pathways appropriate to the local ecology. There will be
different challenges and partners along each part of the journey. Some may set out
to undertake change blindly or before gathering resources that can sustain efforts.
However, the insights of the chapters in this volume suggest that there are resources
available to help individuals, organizations, systems, and communities prepare for
transformative change. Like other journeys, we need to plan for the task and learn
from others who have taken similar roads.

A Travel Kit for Transformative Change

We have organized our ideas about markers of transformative change using prin-
ciples of community psychology. These markers guide where people can look to
address change (and address resistance to change), describe choices in types of
change one may undertake, and point to selected outcomes that may constitute
markers of change. As summarized in Table 18.1, we propose four components of
a framework for transformative change in CMH: (a) ecological levels of analysis,
(b) change strategies, (c) type of change, and (d) targeted change outcomes. This
framework relies heavily on a recent theoretical contribution by Seidman and Tseng
(2011) in community psychology, along with John Sylvestre’s chapter in this book
on planned versus emergent change (Chapter 3).

Ecological Levels
Ecological perspectives established in community psychology theory can help to
organize and prioritize change efforts. In Table 18.1, the ecological levels are orga-
nized from smaller levels of analysis (the individual) to larger levels (policy), just as
we have organized the contents of this book. It is important to recognize that the
different ecological levels are interdependent, so that change in one ecological level
can also impact other ecological levels (Trickett, Kelly, & Todd, 1972). For exam-
ple, Raghavan, Bright, and Shadoin (2008) have argued that program implementa-
tion depends on the policy ecology surrounding programs, including government
funding and regulatory environments. Implementing a community-based program
can be enhanced by adequate funding, training, and technical assistance. In support
of this argument, Nelson, Lord, and Ochocka (2001) found, in a study of change in
 Trans for mative Chang e in C ommuni t y Me ntal Health 375

Table 18.1 Ecological Levels of Analysis, Strategies for Change, Type of Change,

and Targeted Outcomes

Ecological Change Strategies Type of Change Targeted Change

Levels of Outcomes
Analysis
Planned Emergent Resource Social
Allocation Processes
Individual Consciousness X X
raising
Recovery X
interventions
Participatory and X X
consumer-run
research
Services and Education and X X
practices training
Organizational X X
change
Alternative X X
settings
Experimental X X
social innovation
Participatory and X X X
consumer-run
research
Community Community X X X
intervention
Participatory and X X X
consumer-run
research
Social Grassroots X X
conditions community
organizing and
advocacy
Alternative X X
settings

(continued)
376 Conclusion

Table 18.1 Continued

Ecological Change Strategies Type of Change Targeted Change

Levels of Outcomes
Analysis
Planned Emergent Resource Social
Allocation Processes
Policy Policy/legislative X X
interventions
Alternative X X
settings
Participatory and X X
consumer-run
research
Grassroots X X
community
organizing and
advocacy

three CMH services in one community, that transformative change at the commu-
nity level was enhanced because of the synergy of local efforts with the government
policy context: at the same time that the CMH organizations strived to enhance
consumer participation, government policy called for mental health organizations
to increase consumer participation.
Another implication of the ecological perspective is that change can start at
any level of analysis. For example, as Chapter 6 by Brown and Rogers showed,
consciousness raising among consumers/survivors led to the growth of the con-
sumer/survivor movement, which in turn led to impacts in policies and programs,
including the emergence of new settings (e.g., consumer-run organizations;
Janzen, Nelson, Hausfather, & Ochocka, 2007). Mesolevel settings that mediate
between macrosystems and individuals are strategically located to create both
larger systems change and to benefit individuals, as Maton and Brodsky (2011)
have argued. In cases where macrolevel efforts to address inequities are lacking,
organizations may need to organize efforts to address inequities in the short term
for individuals (e.g., raise funds to provide more affordable housing, actively cre-
ate partnerships with potential employers). As Ornelas and colleagues showed in
Chapter 12, mesolevel organizations have opportunities to push larger macrolevel
change. However, a danger at this level of change is that efforts to respond to indi-
vidual need can eclipse, obscure, or exhaust efforts needed to push for macrolevel
change.
 Trans for mative Chang e in C ommuni t y Me ntal Health 377

Change Strategies
Understanding the ecologies of a particular transformative change focus can inform
the selection of strategies needed for a sustained effort. Note from Table 18.1 that
some change strategies are better suited for particular levels of analysis, and some
can address more than one level of analysis. In their framework, Seidman and Tseng
(2011) described a number of intervention strategies that are applicable to transfor-
mative change in CMH.

Consciousness Raising
Consciousness raising about oppressive social-political conditions was part and par-
cel of the early mental patients liberation movement (McCubbin, 2009). Indeed,
the narratives of some early consumer/survivor activists like Pat Capponi (1992)
in Canada and Judi Chamberlin (1978) in the United States demonstrate how
these individuals moved from a state of internalized oppression to sociopolitical
awareness. Lord and Hutchison (1993) have described this shift as a process of per-
sonal empowerment, in which individuals act on their anger, connect with others
who have been in the same situation, and become politicized as they challenge the
social injustices that mental health consumers/survivors face. In Chapter 6, Brown
and Rogers recount the history of the mental patients liberation movement in the
United States and the explicit focus on political action that grew out of conscious-
ness raising.

Recovery Interventions
The notion of recovery in mental health was introduced by consumer/survivor
Patricia Deegan (1988). As Piat and Polvere showed in Chapter 16, recovery has
become an important guiding vision in mental health reform in many countries.
The concept of recovery (Davidson, O’Connell, Tondora, Lawless, & Evans, 2005)
and how mental health systems can promote recovery (Davidson, Tondora, &
O’Connell, 2007) are becoming more refined over time. As well, peer-led recov-
ery interventions, like the Wellness Recovery Action Plan (WRAP), described by
Copeland and Jonikas in Chapter 7, have been widely implemented, with research
attesting to their effectiveness in promoting consumers/survivors’ well-being.
Recovery interventions aimed at the personal empowerment of individual consum-
ers/survivors can be implemented by peers, as in the case of WRAP or other self-
help groups (Salem, 2011), or by professionals.

Education and Training

In Chapter 8, Aubry and O’Hagan underscore the importance of the competen-
cies of mental health workers in a transformed, recovery-oriented mental health
378 Conclusion

system. A system cannot be transformed unless the professionals who work in that
system are transformed. Moreover, these authors take the notion of competencies
a step further by suggesting that the competencies of many different stakeholder
groups need to be identified and developed. Burgess (2012) has argued that CMH
professionals need to develop critical consciousness, skills in dialogue, knowledge,
and their abilities to use bridging social capital to work in transformative ways.
Education can also be undertaken with the community at large. For example, in
their chapters, Brown and Rogers (Chapter 6) and Trainor and Reville (Chapter
16) observe that consumer-run organizations play an important role in public edu-
cation to reduce fear, prejudice, and discrimination (Corrigan et al., 2001).

Organizational Change
Beyond working with individual mental health professionals, a more systemic
approach to organizational change is needed to promote transformation. For
example, how can organizations that provide congregate housing or mainstream
case management services for mental health consumers be transformed? Nelson
et al. (2001) have provided a detailed, qualitative case study of how such organiza-
tional changes were achieved in one community. Value-based organizational change
efforts that consist of high levels of consumer participation, consultation, training,
and patience were important for the changes that they observed. In Chapter 12,
Ornelas and colleagues traced the development of an empowering, CMH orga-
nization in Lisbon, Portugal, that has created systems change as well as consumer
empowerment.
Maton (2008) has identified a number of qualities of empowering organizational
settings, including a group-based belief system, an opportunity role structure, and
a place for positive relationships, which are critical to promoting the psychological,
social, and civic empowerment of members of the organization. Brown and Rogers’s
(Chapter 6) description of consumer-run organizations shows that these settings
possess many of the qualities identified by Maton (2008) as important for empow-
erment. These qualities include opportunities to play leadership roles, participate
in decision making, plan and organize activities, volunteer, receive recognition for
contributions, and form positive relationships. Olmos-Gallo, Starks, Lusczakoski,
Huff, and Mock (2012) found that similar qualities were important for trans-
forming a mainstream CMH organization into one with a recovery orientation.
Informal community settings, like landlord–tenant organizations and other volun-
tary associations, can also provide these empowering qualities, as Kloos and col-
leagues (Chapter 10) and Salzer and Baron (Chapter 11) showed in their chapters.
Davidson et al. (2007) have described the key domains of recovery-oriented mental
health systems. These domains are more specific aspects of empowering settings
as they relate to mental health services and include consumer participation, access
and engagement, continuity of care, strengths-based assessment, and individualized
 Trans for mative Chang e in C ommuni t y Me ntal Health 379

recovery planning, as well as staff working as recovery guides, addressing barriers to

recovery, and mapping the resources and capacities of the community.

Creation of Alternative Settings

Sarason (1972) wrote about the importance of creating new settings that function
as an alternative to more mainstream services. In the 1970s, people who had been
institutionalized began to develop their own self-help organizations to serve as a
platform for both mutual support and political action. The consumer-run orga-
nizations described by Brown and Rogers (Chapter 6) and Trainor and Reville
(Chapter 15) are contemporary examples of these alternative settings. A growing
body of research cited in these two chapters attests to the effectiveness of consumer-
run organizations in improving outcomes for consumers. In Chapter 9, Nelson and
colleagues described the creation of several alternative CMH settings for minority
cultural-linguistic communities who typically shy away from and are ill-served by
mainstream CMH programs. The participation of culturally diverse communities
in creating settings that could meet their needs was underscored in their case study.

Experimental Social Innovation

Fairweather (1967), the community psychologist who created and evaluated the
Lodge program described in Chapter 2, introduced the idea of experimental social
innovation. He believed that innovative social programs should be rigorously evalu-
ated using experimental research. A good example of this approach is the Housing First
model. The original program in New York City, Pathways to Housing, was evaluated
using both quasi-experimental and experimental designs and found to be effective in
reaching its goals (see Chapter 13 by Goering & Tsemberis). Housing First has been
disseminated in many communities in the United States, and experimental evaluations
are being replicated in Canada and Europe, as shown in the chapters by Goering and
Tsemberis (Chapter 13) and Ornelas and colleagues (Chapter 12). The supported
education approach described in Chapter 14 by Unger is another social innovation
that has been subjected to experimental evaluation and has been found to enhance the
educational outcomes and well-being of students with mental health issues.

Community Intervention
In Chapter 10, Kloos and colleagues reviewed a number of avenues for promoting
community integration and social inclusion. These include working with landlords,
landlord–tenant organizations, neighbors, social network members, and commu-
nity associations. They also emphasized interventions with the police and media to
counter prejudice and discrimination. In Chapter 11, Salzer and Baron described
barriers to achieving community integration for people with mental health issues,
noting limited access to housing, employment, and the social relationships that
develop in neighborhood and work settings.
380 Conclusion

Participatory and Consumer-Run Research

Nelson, Janzen, Ochocka, and Trainor (2010) have advocated for the use of
participatory action research (PAR) with mental health consumers/survivors.
Participation means that consumers/survivors should be maximally involved in
all phases of a research endeavor, from start to finish, beginning with framing the
research questions. The action component of PAR is important for transformative
change because it suggests that research should be aimed at enhancing the liberation
and well-being of mental health consumers/survivors. Participatory action research
can be done in both mainstream CMH organizations (Nelson et al., 2001) and
mental health self-help organizations (Nelson et al., 2010). In Chapter 17, Jones
and colleagues take PAR—and possibilities for transformation—a step further in
arguing for research that is conducted by mental health consumers/survivors.

Grassroots Organizing and Advocacy

Both Brown and Rogers (Chapter 6) and Trainor and Reville (Chapter 15) traced
the roots and activities of the mental patients liberation movement in North
America in their chapters. Like other social movements, the mental patients libera-
tion movement involved grassroots organizing of people who had direct experience
with the mental health system. Originally, this movement aimed to eliminate abuses
of people in psychiatric institutions and protect their civil rights. Political protest
and legal action can play an important role in reducing prejudice and discrimination
(Corrigan et al., 2001). With the growth and government support of consumer-
run organizations, many mental health consumers/survivors today find themselves
as “insiders” working for change, rather than in the “outsider” roles that they often
played in the past. Consumers/survivors can work in partnership with other orga-
nizations (e.g., the US National Coalition for Mental Health Recovery), or they
can work as individuals or in their organizations. Trainor and Reville (Chapter 15)
cautioned how consumer/survivor voices can become muted as consumer-run
organizations are merged into mainstream CMH services. Wilton (2004a; 2004b)
described how advocacy activities were undertaken by a coalition of stakeholders
to reinstate the personal needs allowance and bus passes that had been cut in the
city of Hamilton, Ontario. With growing socioeconomic inequalities, a revitalized
mental patients liberation movement is needed to ally itself with other social change
movements that strive for social, economic, and environmental justice.

Policy/Legislative Interventions
In Chapter 13, Goering and Tsemberis showed how the introduction of the Housing
First model in several Canadian communities is impacting policy in these jurisdic-
tions. The chapters by Piat and Polvere (Chapter 16) and Davidson and colleagues
(Chapter 5) demonstrated that the philosophy of recovery has become a key part
 Trans for mative Chang e in C ommuni t y Me ntal Health 381

of transformative policy change. Also, Trainor and Reville (Chapter 15) showed
that policies that directly fund consumer-operated initiatives address the important
role of consumer control and peer support. The case of the Consumer/Survivor
Development Initiative (CSDI) in Ontario is a good example of the complemen-
tary nature of insider and outsider approaches to change. David Reville was well
positioned as both a government insider, as special advisor to the premier of a social
democratic government and former member of provincial parliament, and as an
outsider, a former patient with strong ties to the mental patient liberation move-
ment in Ontario. Inside government, David was able to create the CSDI with sup-
portive professional colleagues like John Trainor.

Planned Change Versus Emergent Change

Another important dimension of a sustained transformative change effort is the dis-
tinction between planned and emergent change. Like a journey, some routes will
be carefully planned but opportunities may arise to take a new and uncharted path
or an unexpected shortcut opportunity for quicker travel. How can we prepare for
sustained efforts and still be open to opportunity? In Chapter 3, Sylvestre argues
that planned change is deliberate and intentional, whereas emergent change is more
spontaneous and opportunistic. This distinction can be linked with evolutionary
and revolutionary approaches to change in mental health systems, as described by
Corrigan and Boyle (2003). Evolutionary change is slow and incremental, whereas
revolutionary change is more rapid and abrupt. To use the language of Kuhn (1970),
planned or evolutionary change is more like “normal science,” whereas emergent or
revolutionary change is more like a paradigm shift.
Planned, evolutionary change and emergent, revolutionary change call for com-
munity psychologists and other stakeholders to play different roles. Nelson and
Prilleltensky (2010) made a distinction between “insider” and “outsider” roles that
is relevant here. Planned change typically requires social interventionists to play
“insider” roles, working within systems to create change, whereas emergent change
calls for interventionists to play “outsider” roles, working outside the system for
change. These different approaches and roles pose a potential dialectic for those
interested in transformative change. To what extent do we emphasize “taking the
long view” of evolutionary, planned change or “seizing the day” for revolutionary
change?

Planned Change
Some argue for a strategy of sustainable, deliberate change efforts, such as Weick’s
(1986) strategy of small wins that can allow an initiative to persevere through resis-
tance and opposition to change. Official responses of “no” are not accepted, and
change efforts persist over time. This approach takes a “long view” to promoting
382 Conclusion

sustainable change. Planned change holds a great deal of hope and promise for pro-
gressive mental health professionals who work within the mental health system, but
they will be constrained by some of the contextual forces described earlier.

Emergent Change
Others advocate for more rapid change that pushes to quickly transform systems.
“Seizing the day” can require visible roles to push for change and for individuals
involved in the political processes of making policy (e.g., lobbying policy mak-
ers, organizing political action when needed). This approach calls us to recognize
opportunities for larger change movements that can arise at times of crisis or under
the pressure of social forces. In her article on using research to inform social pol-
icy, Shinn (2007) notes that timing and political leadership are important factors
that influence whether and how research will be used. Emergent change and social
movements created the recovery approach, consumer participation, and self-help
movement, not professionals working within the system. Seidman and Tseng’s
(2011) description of the change strategies of reduction of inequity and utopian
approaches are consistent with this approach to emergent change, which focus on
consumer outsiders and a broader social movement of solidarity. Similarly, Maton
and Brodsky’s (2011) explication of the external, systems change activities of
empowering settings is relevant here.

Planned Change, Emergent Change, and Transformative Change

We believe that both planned and emergent approaches have their place in creating
transformative change. Finding a balance of intervention approaches will need to
be actively negotiated and renegotiated within change efforts as contextual condi-
tions change. For example, whereas the emergence of homelessness as a problem
provided an opportunity for the development the innovative Housing First model
(an emergent change), evaluation research on Housing First (a planned change
strategy) has helped to expand the model, as shown in Chapter 13 by Goering and
Tsemberis. We also want to note that these two approaches are interdependent and
complementary. There is a well-known story of a prominent labor leader who went
to the White House for a meeting with President Franklin Delano Roosevelt during
the Great Depression. The activist laid out an agenda of urgent changes that needed
to be enacted. Roosevelt responded, “You’ve convinced me. I would like to push
forward these changes. Now go out and make me do it.”

Targeted Transformative Change Outcomes

Perhaps the most useful tools for a journey are markers that help the traveler
know when she is on the right path and when she has arrived at a destination. In
the language of program development and service utilization, we need to focus on
 Trans for mative Chang e in C ommuni t y Me ntal Health 383

processes and outcomes that are associated with transformative change. We pro-
pose that the transformative outcomes of change efforts be examined in patterns
of resource allocation, social roles, and associated social processes. These proposed
markers of transformative change draw on key elements of Seidman and Tseng’s
(2011) model.

Resources and Their Organization

Resources—and how they are allocated or organized—can be conceived of at dif-
ferent ecological levels of analysis (Trickett et al., 1972). Moreover, those with supe-
rior bargaining resources have power over those with fewer bargaining resources
(Gaventa, 1980). In the mental health field, resources have been reallocated from
hospital to CMH programs, but this has not resulted in transformative change.
Rather, it has simply changed the locus of mental health services. Most resources
continue to be allocated to a medical model system of mental health services.
The allocation of resources at the macrosystem level (national and global) is
also important for transformative change in mental health. There has been grow-
ing socioeconomic inequality in many developed countries over the past 40 years,
particularly in the United States, United Kingdom, Australia, and Canada (Bartels,
2008). This increased socioeconomic inequality leads to negative impacts on the
well-being of vulnerable individuals (Wilkinson & Pickett, 2010) by increasing risk
factors (e.g., social and economic stress) and reducing protective factors (e.g., sup-
portive services and communities) for mental health. As well, there are also massive
global inequalities in wealth, such that many people in developing countries have
little access to mental health services, housing, employment, education, and other
basic resources.
This broader macropolitical context of growing national and global socioeco-
nomic inequality provides a formidable challenge to efforts designed to create
transformative change in mental health (Walker, Johnson, & Cunningham, 2012).
Thus, there is a need for critical, culturally responsive approaches to address men-
tal health in the global context (Burgess, 2012; Johnson, 2012), including linking
transformative mental health change work with larger changes in how international
development is conceived and practiced (Collins et al., 2011).

Social Processes
Social processes are the central component of the Seidman and Tseng (2011)
framework because various social processes are the means by which settings influ-
ence individuals and vice versa. Closely aligned with this framework is Maton’s
(2008) formulation of the characteristics of empowering settings. Empowering
settings are those that lead to individual outcomes of psychological, social, and
civic empowerment (Maton  & Brodsky, 2011; Trickett, 2011). Recently, Maton
and Brodsky (2011) have expanded Maton’s (2008) formulation of empowering
384 Conclusion

settings to include external activities that are designed to have an impact on the
larger environment.
According to Seidman and Tseng (2011), social processes occur in three
domains: norms, interactional patterns, and participation. Norms provide the cul-
tural scripts and expectations for behaviors and practices, interactional patterns are
the ways that members of a setting relate to one another, and participation refers to
the extent to which members can participate in the setting and the types of activi-
ties in which they participate. We know that in psychiatric hospitals the institutional
norms call for patient compliance, staff–patient relationships are hierarchical, and
patients have considerable constraints placed on the ways in which they can partici-
pate. Transformative change means changes in norms, interactional patterns, and
participation. Norms need to change from a deficit-oriented, illness narrative to a
recovery narrative (Salem, 2011); interactional patterns need to shift to greater con-
sumer/survivor control in relationships with professionals; and consumer/survivor
participation should be enhanced.

Summary
We make four observations about the community psychology model of transforma-
tive change in CMH shown in Table 18.1. First, for transformative change to occur,
there must be changes at multiple ecological levels. Community psychology goes
beyond the individual to look at multiple levels of the systems in which individu-
als are embedded. Second, although some change strategies are aimed at particular
ecological levels (e.g., consciousness raising for individuals, policy and legislative
interventions for policy change), other strategies can be used to create change
simultaneously at multiple ecological levels (e.g., participatory and consumer-run
research, alternative settings), as Maton and Brodsky (2011) have argued. Third,
planned change strategies that involve “inside” change agents are most often aimed
at individuals and the programs that serve them, whereas emergent change strate-
gies that involve “outside” change agents are often aimed at changing larger eco-
logical levels, such as communities, social conditions, and policies. Finally, the
transformative outcome of resource reallocation focuses on larger ecological levels
(communities, social conditions, policies), whereas the transformative outcome of
social processes more typically focuses at the interface of the individual with pro-
grams, organizations, and peers.

Future Directions for Research and Action

in Transformative Change
In this chapter, the model that we presented proposes ways of thinking about
and evaluating transformative change efforts. We argue that four key elements of
 Trans for mative Chang e in C ommuni t y Me ntal Health 385

transformative change can guide these efforts (a)  addressing multiple ecological
levels of analysis, (b) using a variety of different change strategies, (c) employing
both planned and emergent change approaches, and (d) creating changes in both
resource allocation and social processes.
Although this model derives from community psychology theory, elements of
the model are recognizable in different disciplines. Clearly, successful efforts to
promote transformative change will be multidisciplinary or even transdisciplinary.
Other theories and experiences can add to successful transformative change jour-
neys. We have focused on the potential contributions from community psychology
to inform systematic and sustained transformative change efforts. As a field that is
premised on both community research and action, community psychology can play
a role in the resurrection and transformation of CMH (Rappaport, 1992).
We (Geoff, Bret, José) are in the early stages of forming an International Network
for Transformative Change in Community Mental Health. Through various confer-
ence presentations, meetings, and networking, we have identified a small group of
community psychologists and community psychology graduate students who are
committed to transformative change in CMH. We come from different countries
and different regions. Perhaps more importantly, we have different experiences with
mental health systems as users, service providers, program developers, administra-
tors, researchers, and advocates. We have drawn on these experiences to create a
draft declaration for this network and a website platform that includes the following
elements:

1. Articulate a vision: We seek to establish an alternative paradigm to the promo-

tion of mental health in community settings, one based on the values of citizen-
ship, recovery, empowerment, inclusion, and social justice. Our work includes
the articulation of models, identification of promising practices, and research to
demonstrate the value of this alternative paradigm. As well, we seek to create an
international network (organization) that can support the development of this
paradigm and transformative change in mental health systems and communities.
2. Affirm partnership among stakeholders:  We seek to ground the network in the
field of community psychology, but partner with other consumers/survivors/
users, mental health professionals, community leaders, and social and biomedi-
cal scientists.
3. Affirm international scope: We seek to intentionally build a network in regions
where there has been support for alternative practices in CMH. After establish-
ing a network, we want find ways to be a resource for other areas interested in
pursuing alternative paradigms for the promotion of mental health in commu-
nity settings.

As we continually refine the vision for this network, we plan to identify both
short- and long-term goals. Potential areas of work could include consumer/
386 Conclusion

survivor supports and organizations, consumer/survivor-led research, and Housing

First projects. Developing informational materials, creating communities of prac-
tice, and engaging in international networking, collaboration, and research around
such areas are ways that the network could begin to address the pressing needs for
mental health reform. We recognize that, as the context changes over time, new
ideas for transformative change will be needed because today’s innovation can
become tomorrow’s institution.

Conclusion
As is evident from the chapters in this volume, many exciting and adventurous
pockets of change have occurred in CMH, spanning approaches to individual prac-
tice to social policy change. In this final chapter, we strived to capture the essence of
these different change efforts in a conceptual framework that more clearly indicates
the key components of transformative change at multiple levels of analysis and strat-
egies for achieving such changes. Hopefully, the exemplars of transformative change
presented in this volume and our attempts at conceptualizing them will prove useful
to community psychologists and others who seek to change mental health systems
around the world. We look forward to a reinvigorated involvement of community
psychology in CMH, continued debates about change and how to achieve it, and
new ideas that can be translated into actions that improve the lives of people who
have experienced mental health issues.

References
Bartels, L.  M. (2008). Unequal democracy:  The political economy of the new gilded age. Princeton,
NJ: Princeton University Press.
Burgess, R. (2012). Supporting global mental health: Critical community psychology as a potential
panacea. In C. Walker, K. Johnson, & L. Cunningham (Eds.), Community psychology and the
socio-economics of mental distress: International perspectives (pp. 108–123). New York: Palgrave.
Capponi, P. (1992). Upstairs in the crazy house: The life of a psychiatric survivor. Toronto: Viking.
Chamberlin, J. (1978). On our own:  Patient-controlled alternatives to the mental health system.
New York: McGraw-Hill.
Collins, P. Y., Patel, V., Joestl, S. S., March, D., Insel, T. R., & Daar, A. S. (2011). Grand challenges in
global mental health. Nature, 475, 27–30.
Corrigan, P. W., & Boyle, M. G. (2003). What works for mental health system change: Evolution or
revolution? Administration and Policy in Mental Health, 30, 379–395.
Corrigan, P. W., River, L. P., Lundin, R. K., Penn, D. L., Uphoff-Wasowski, K., Campion, J., Mathisen,
J., Gagnon, C., Bergman, M., Goldstein, H.,  & Kubiak, M.  A. (2001). Three strategies for
changing attributions about severe mental illness. Schizophrenia Bulletin, 27, 187–195.
Davidson, L., O’Connell, M. J., Tondora, J., Lawless, M., & Evans, A. C. (2005). Recovery in serious
mental illness: A new wine or just a new bottle? Professional Psychology: Research and Practice,
36, 480–487.
 Trans for mative Chang e in C ommuni t y Me ntal Health 387

Davidson, L., Tondora, J., & O’Connell, M. J. (2007). Creating a recovery-oriented system of behav-
ioral health care: Moving from concept to reality. Psychiatric Rehabilitation Journal, 31, 23–31.
Deegan, P. E. (1988). Recovery: The lived experience of rehabilitation. Psychosocial Rehabilitation
Journal, 11(4), 11–19.
Fairweather, G. W. (1967). Methods for experimental social innovation. Oxford: John Wiley and Sons.
Gaventa, J. (1980). Power and powerlessness:  Quiescence and rebellion in an Appalachian valley.
Urbana, IL: University of Illinois Press.
Janzen, R., Nelson, G., Hausfather, N.,  & Ochocka, J. (2007). Capturing system level activities
and impacts of mental health consumer-run organizations. American Journal of Community
Psychology, 41, 4–21.
Johnson, K. (2012). Global mental health, cultural specificity, and the risk of neo-colonialism. In C.
Walker, K. Johnson, & L. Cunningham (Eds.), Community psychology and the socio-economics of
mental distress: International perspectives (pp. 269–283). New York: Palgrave.
Kuhn, T. S. (1970). The structure of scientific revolutions. Chicago: University of Chicago Press.
Lord, J., & Hutchison, P. (1993). The process of empowerment: Implications for theory and prac-
tice. Canadian Journal of Community Mental Health, 12(1), 5–22.
Maton, K. I. (2008). Empowering community settings: Agents of individual development, com-
munity betterment, and positive social change. American Journal of Community Psychology, 41,
4–21.
Maton, K.  I.,  & Brodsky, A.  E. (2011). Empowering community settings:  Theory, research, and
action. In M. S. Aber, K. I. Maton, & E. Seidman (Eds.), Empowering settings and voices for social
change (pp. 38–64). New York: Oxford University Press.
McCubbin, M. (2009). Oppression and empowerment: The genesis of a critical analysis of mental
health. In D. Fox, I. Prilleltensky, & S. Austin (Eds.), Critical psychology: An introduction (2nd
ed., pp. 300–316). Los Angeles: Sage.
Nelson, G., Janzen, R., Ochocka, J., & Trainor, J. (2010). Participatory action research and evalu-
ation with mental health self-help groups and organizations: A theoretical framework. In L.
Brown & S. Wituk (Eds.), Mental health self-help: Consumer and family driven initiatives (pp.
39–58). New York: Springer.
Nelson, G., Lord, J., & Ochocka, J. (2001). Shifting the paradigm in community mental health: Towards
empowerment and community. Toronto: University of Toronto Press.
Nelson, G.,  & Prilleltensky, I. (Eds.). (2010). Community psychology:  In pursuit of liberation and
well-being (2nd ed.). New York: Palgrave.
Olmos-Gallo, P. A., Starks, R. Lusczakoski, K. D., Huff, S., & Mock, K. (2012). Seven key strategies
that work together to create recovery based transformation. Community Mental Health Journal,
48, 294–301.
Prilleltensky, I. (2012). Wellness as fairness. American Journal of Community Psychology, 49, 1–21.
Raghavan, R., Bright, C. L., & Shadoin, A. L. (2008). Towards a policy ecology of implementation
of evidence-based practices in mental health settings. Implementation Science, 3, 26.
Rappaport, J. (1992). The death and resurrection of a community mental health movement. In M.
Kessler, S.E. Goldston,  & J.M. Joffe (Eds.), The present and future of prevention:  In honor of
George W.  Albee:  The Vermont Conference Series on the primary prevention of psychopathology
(Vol. 15, pp. 78–98). London: Sage.
Salem, D. (2011). Voices from the ground up: The use of narrative in understanding recovery from
serious mental illness. In M. S. Aber, K. I. Maton, & E. Seidman (Eds.), Empowering settings and
voices for social change (pp. 107–133). New York: Oxford University Press.
Sarason, S. B. (1972). The creation of settings and the future societies. San Francisco: Jossey-Bass.
Seidman, E., & Tseng, V. (2011). Changing social settings: A framework for action. In M. S. Aber,
K. I. Maton, & E. Seidman (Eds.), Empowering settings and voices for social change (pp. 12–37).
New York: Oxford University Press.
Shinn, B. (2007). Waltzing with a monster: Bringing research to bear on public policy. Journal of
Social Issues, 63, 215–231.
388 Conclusion

Trickett, E. J. (2011). Settings and empowerment. In M. S. Aber, K. I. Maton, & E. Seidman (Eds.),
Empowering settings and voices for social change (pp. 94–106). New York: Oxford University
Press.
Trickett, E. J., Kelly, J. G., & Todd, D. M. (1972). The social environment of the high school: Guidelines
for individual change and organizational redevelopment. In S. E. Golann & C. Eisdorfer (Eds.),
Handbook of community mental health (pp. 331–406). New York: Appleton-Century-Crofts.
Walker, C., Johnson, K., & Cunningham, L. (2012). Introduction to the socio-economics of men-
tal distress: International perspectives. In C. Walker, K. Johnson, & L. Cunningham (Eds.),
Community psychology and the socio-economics of mental distress:  International perspectives
(pp. 1–10). New York: Palgrave.
Weick, K. L. (1986). Small wins: Redefining the scale of social issues. In J. Rappaport & E. Seidman
(Eds.), Redefining social problems (pp. 29–48). New York: Plenum Press.
Wilkinson, R.,  & Pickett, K. (2010). The spirit level:  Why equality is better for everyone. London:
Penguin Books.
Wilton, R. (2004a). More responsibility, less control: Welfare state restructuring and the citizenship
of psychiatric consumer/survivors. Disability and Society, 19, 329–342.
Wilton, R. (2004b). Putting policy into practice? Poverty and people with serious mental illness.
Social Science and Medicine, 58, 25–39.
 INDEX

Page numbers followed by “f ” and “t” indicate figures and tables.

Aarons, Bernard, 113 Assessment. See Evaluation

Abel Enterprises, 311 Assimilation, Integration, Marginalization,
Abundant commodities, 222 Segregation (AIMS) charts, 243, 243t
Academic researchers, 361–365 Association for Study and Psychosocial
Accessibility Integration (AEIPS)
community integration and, 210–211, 212–214 collaboration and, 262–264
supported education and, 296 employment and, 77–78, 262–264
Wellness Recovery Action Plans and, 147 history of, 257–262
ACT. See Assertive Community Treatment housing and, 81
Action researchers, 193–194 overview of, 253
Actions recovery, community integration and, 265–272
participatory research and, 358 Associations, promoting participation in,
“Taking Culture Seriously in Community 217–218
Mental Health” project and, 179–180, 180f, At Home/Chez Soi, 283–288, 289
183, 187t, 188–189 Aubry et al. study on competencies, 154–156t, 158
ADA. See Americans with Disabilities Act Australia
Adaptability, 282 history of community psychology in, 27
Advance Directives, 140 policy and, 334, 335t, 339, 340, 342
Advanced Level Facilitators, 142 Authorship, 357
Advocacy, 316–317, 319, 380 Autonomy, 134, 259, 297
AEIPS. See Association for Study and Availability, supported education and, 296
Psychosocial Integration AWAY Express Couriers, 310–311, 321
Affiliation, 80t, 82
AIMS charts, 243, 243t Bachrach, Leona, 311
Albee, George, 25 Bailey-Floyd, Carol, 146
Alienation, user/survivor participation in research Basaglia, Franco, 40–41
and, 365 Basaglia’s Law, 40–41
Alternative settings, 237, 379 Bazelon Center for Mental Health Law, 122
Ameliorative change, transformative change vs., Beales, Anne, 342–343
9–12, 52, 330–331 Beers, Clifford W., 112
American College Health Association, 299 Bellamy, Cheryl, 99
Americans with Disabilities Act (ADA), 114, 221, Bennett, Ed, 42
232, 294 Beresford, Peter, 354
Anti-Insane Asylum Society, 112 Bodily integrity, 80t, 81
Assertive Community Treatment (ACT), 10, 77, Boston University, 294
152, 208, 279 Bounding the system, 58

389
390 Index
CAI. See Competency Assessment Instrument
Calgary Homeless Foundation, 282
Cameron, Ewen, 315
Campbell, Jean, 125
Canada. See also Consumer/Survivor
Development Initiative; Ontario, Canada;
“Taking Culture Seriously in Community
Mental Health” project
community-owned research and, 360
history of community psychology in, 27
At Home/Chez Soi and, 283–288, 289
policy and, 310–313, 335t, 337, 338, 340
user/survivor participation in research in, 353
Canadian Charter of Rights and Freedoms, 312
Canadian Journal of Community Mental Health, 42
Canadian Mental Health Association (CMHA),
42, 218, 310, 343
Capabilities approach
advantages of, 83–85
central human functional capabilities and,
79–83, 80t
community integration and, 236
institutional resources required to maximize
freedoms and, 76–79
organizational change and, 256
overview of, 12–13, 75–76
Capabilities deprivation, 234–235
Capability sets, 76
Capponi, Pat, 42, 377
Careless Society, The (McKnight), 167
Caring and compassion, 7
Caring and emancipatory functions, 315
Casas Primeiro program, 81, 265–267
Caseloads, increasing, 5
CCBR. See Centre for Community Based
Research
CCSR. See Center for Community Support and
Research
CEAM program. See Empowerment and
community integration paradigm
Center for Community Study (University of
Rochester), 28
Center for Community Support and Research
(CCSR), 118
Centers for Independent Living, 235
Centers of Excellence, 93
Central Coordinating Council, 97–99
Central Intelligence Agency (CIA), 315
Central West-Local Health Integration Network,
189
Centre for Community Based Research (CCBR),
178
Certified Peer Specialists, 149
Chamberlin, Judi, 5, 41, 113, 377
Chang, Dennis, 325
Change. See also Continuous and emergent
change; Planned systems change
ameliorative vs. transformative, 9–12, 52,
330–331
consumer-run organizations and, 122–123
organic model of, 66
planned vs. emergent, 381–382
threshold model of, 64
types of, 52–53
Charter of Rights and Freedoms, 312
Chez Soi, 283–288, 289
Chicago Food System Collaborative, 60
Chicago Public School system, 60
Chinman et al. study on competencies, 154–156t,
157–158
Chronic residential mobility, 213
Church, Kathryn, 325
CIA. See Central Intelligence Agency
CIT. See Crisis intervention teams
Citizen participation. See Participation
Civic life, community integration and, 236
Client Optimism Scale, 157–158
Clinical competencies, 162
Clubhouse model, 111
CMHA. See Canadian Mental Health Association
CMHCs. See Community mental health centers
Coalition for change, 58
Coalitions, 58, 302–303. See also National
Coalition for Mental Health Recovery
Co-authors, 357
Cochrane hierarchy of evidence, 362
Collaboration
empowerment and, 256
organizational change and, 262–264
overview of, 8, 37–38
planned systems change and, 58
reciprocal, 179
“Taking Culture Seriously in Community
Mental Health” project and, 182–183, 187t,
190, 192–196
Collective behavior, 64
College. See Education
Combined capabilities, 76
Commissioner of Mental Health and Addiction
Services (Connecticut), 91–92
Commitment, empowerment and, 256
Communication, organizational life and, 66
Communities of practice, 70–71
Community. See also Nonprofessionals
ameliorative vs. transformative change and, 12
defining participation in, 206–207
importance of, 205–206
overview of with transformative change,
14t, 15
Community Centers (Portugal), 259, 266
Community coalitions, 302–303
Community integration
accessibility and, 212–214
association participation and, 217–218
 Ind e x
changing paradigms of functioning and, 233–235
conundrum of, 81
conundrums of, 239–246
countering prejudice and discrimination and,
219–221
history of, 111–112
“John the Person” and, 232–233
mainstream resources for, 239
natural supports for, 238–239
organizational change and, 254–255, 265–272
overview of, 205–209
perspectives on recovery and, 229
promotion of, 32, 207–209
reconsidering focus on, 209–211
social inclusion and, 214–216
systems prioritizing, 235–238
Wellness Recovery Action Plans and, 147
Community leaders, competencies of, 169–170,
173t
Community life, key domains of, 211–221
Community Lodge model, 29, 38–40. See also
Fairweather Lodge
Community mental health centers (CMHCs), 6,
25–26
Community Mental Health Centers Act, 25, 111
Community mental health funding, 311
Community owned and managed research
(COMR), 358–359
Community-owned research, 357–361
Community psychology, overview of, 6–7
Community resource base, 167–168, 168t
Community Support Movement, 91
Community Support Program, 113
Community-University Research Alliance
(CURA), 177–180, 178f, 180f. See also
“Taking Culture Seriously in Community
Mental Health” project
Compassion, 7
Compatibility, implementation of Housing First
and, 282
Competencies
comparison of transformative vs. those
identified in existing research, 171–173t
defined, 153
necessary, 15, 162–165
overview of, 152–153
review of research on, 153–162, 154–156t
of stakeholders in transformed mental health
system, 166–173, 171–173t
Competency Assessment Instrument (CAI),
157–158, 161
Complex adaptive systems thinking, 64–65
Complexity, continuous and emergent change
and, 64–66
Complex responsive process, 66, 69
COMR. See Community owned and managed
research
391
Condoms, 81
Conflicts, consumer-run organizations and, 121
Connecticut
assessing and improving quality of care in, 95f
consumer and family-driven system in, 91–94,
93t, 94f
housing in, 214
planning and oversight of transformation in,
94–97, 95f
Consciousness raising, 377
Consumer, Youth, and Family Advisory Council
(CYFAC), 95–97, 95f, 98t, 100t
Consumer and family driven systems
assessing and improving quality of care and, 95f
evaluation of current system and, 90, 92
involvement of recovery community and, 90
overview of, 89–90
planning and oversight and, 90, 92, 93t, 94–97,
95f
setting agenda for change and, 90–94,
93t, 94f
Consumer-led training programs, 161
Consumer-Operated Service Program (COSP)
Multisite Research Initiative, 117, 123
Consumer-oriented perspective on recovery, 229
Consumer Research and Evaluation Network
(CREN), 101–104
Consumer-run organizations (CROs)
best practices of, 118–123
in framework for transformative change, 378,
379
The Friends Connection and, 123–124
future directions for, 124–125
history of, 111–115
overview of, 108–111
theoretical foundations of, 115–118
Consumer/Survivor Development Initiative
(CSDI)
context of, 310–313
design of, 313–316
future and, 322
goals of, 316
impacts of, 319–321
implementation of, 316–319
independence and, 317
insider and outsider approaches to change and,
381
lessons of, 322–323
member-driven approach to, 317–318
as nonservice approach, 316–317
overview of, 42–43, 309–310
problems of, 321–322
projects and activities of, 318–319
transformative change and, 323–324
Consumer/survivor/ex-patient movement
(c/s/x), 112–115
Consumer/Survivor Initiatives (CSIs), 16, 43
392 Index
“Consumer Survivor Initiatives in Ontario”
report, 322
Consumer/survivor movement, 5, 8, 328–329
Consumer/survivors
ameliorative vs. transformative change and,
11–12
competencies of, 168–169, 172–173t
terminology of, 3
Contextual-ecological approach, 255
Continuous and emergent change
case example of, 67–68
complex responsive processes and, 64–66
organic model of, 65
overview of, 55t, 63, 71–73, 382
roles for community psychologists in, 68–71
scientific revolutions and, 63–64
strengths and weaknesses of, 71
threshold model and, 64
Continuous change, 53
Control and participation, 94f
Control over environment, 80t, 82–83
Conundrums, 81, 239–246
Cooperative States Research Education and
Extension Services (CSREES), 183
Cooptation, 368
Coordination, supported education and, 297
Copeland, Mary Ellen, 133, 141–143
Copeland Center for Wellness and Recovery, 142,
146, 147
Core services, 165
Corrigan, Pat, 351
Cowen, Emory, 26, 28, 31
Credentials, 360–361, 362–363
CREN. See Consumer Research and Evaluation
Network
Crisis counseling, 317
Crisis intervention teams (CIT), 221
Crisis planning, 139–140
Critical friends, 61
CSDI. See Consumer/Survivor Development
Initiative
CSIs. See Consumer/Survivor Initiatives
CSREES. See Cooperative States Research
Education and Extension Services
C/s/x. See Consumer/survivor/ex-patient
movement
Cultural-linguistic communities. See “Taking
Culture Seriously in Community Mental
Health” project
Cultural negotiation, 197
Curtis, Lois, 232. See also Olmstead decision
Curtis et al. study on competencies, 154–156t
CYFAC. See Consumer, Youth, and Family
Advisory Council
Daily Maintenance Plans, 136–137
Davidson, Larry, 351
“A Day in the Life” project, 104–105, 106
Decision-making
consumer-run organizations and, 119
Consumer/Survivor Development Initiative
and, 323, 324
controlling channels for participation in, 35–36
dignity of failure in, 37
Definitions. See Language and terminology
Degrees, 362–363
Deinstitutionalization, 5, 24–25, 44, 257–258,
311–312, 315
Democracy, 317–318
Department of Housing and Urban Development,
80
Depression and Bipolar Support Alliance, 112
Destination: Recovery Te Unga ki Uta, 338, 342
Devaluation, 219
Diagnostic and Statistical Manual of Mental
Disorders (DSM), 8–9, 299
Diagnostic categories, 8–9
Differentiation, structure and, 110
Dignity of failure, 37
Direction setting, 183
Disability, changing paradigms of functioning
and, 234–235
Disability payments, 81
Discrimination
Association for Study and Psychosocial
Integration and, 78
community integration and, 210–211, 219–221
education and, 294
empowerment and, 35
recovery and, 331, 338, 343
social justice and, 33
Dismissal of Students with Mental Disorders, The
(Pavela), 294
Distal support, 218
Distributive justice, 33
Diversity, 365. See also “Taking Culture Seriously
in Community Mental Health” project
Diversity Fellowship Program, 365
Doctorates, 362–363
Dohrenwend, Barbara, 26
Drivers, 165
Drop-in centers, 112–113, 360
DSM. See Diagnostic and Statistical Manual of
Mental Disorders
Dumping of mental patients, 312
Dynamic change, 53
Dynamic inclusion, 179
Early Warning Signs Action Plans, 138–139
Ecological approaches, 7, 33–34, 374–376,
375–376t. See also Contextual-ecological
approach; Social ecological model
Ecological model of stress and coping, 26
Economies of scale, 110
 Ind e x
ECT. See Electroconvulsive therapy
Education. See also Supported education
community integration and, 210, 235
Connecticut system transformation and, 94f
Consumer/Survivor Development Initiative
and, 319
continuous and emergent change and, 70–71
in framework for transformative change,
377–378
history of community psychology and, 26
organizational change and, 267–270
overview of, 16
participatory research and, 358
user/survivor participation in research and,
362–363
Electroconvulsive therapy (ECT), 353
Elements of A Recovery Facilitating System
(ERFS), 101–103, 102f, 103t
Emergent change, 55, 382. See also Continuous
and emergent change
Emotions, 80t
Emotions Anonymous, 112
Empiricism, 38
Employment. See also Supported employment
Association for Study and Psychosocial
Integration and, 77–78
community integration and, 235, 244–245
organizational change and, 267–270
Empowerment. See also Power
competencies and, 160
consciousness raising and, 377
consumer-run organizations and, 115–116,
118–120
emphasis on, 7
initiatives relative to, 30
organizational change and, 255–256, 262–264
participatory research and, 356–357, 358
Portugal and, 43–44
as resource, 34–35
settings for, 383–384
Empowerment and community integration
paradigm, 111, 148, 149. See also
Community integration
Empowerment and Mutual Help Centre (CEAM)
program, 263
Engagement, 82
England. See also United Kingdom
policy and, 335t, 336, 338, 340, 341, 342
Service User Research Enterprise and, 363–364
English-as-a-second-language (ESL) classes, 191
Episodic change, 53, 55–57
Equality, 58, 165
ERFS. See Elements of A Recovery Facilitating
System
ESL classes, 191
Ethnicity. See “Taking Culture Seriously in
Community Mental Health” project
393
Evaluation
community psychology and, 38
competencies for transformed mental health
system and, 165
Connecticut system transformation and, 97–105
Lodge model and, 40
policy implementation and, 345
Evidence base. See also Research
competencies for transformed mental health
system and, 165
consumer-run organizations and, 116–118
for supported education, 297–299
for Wellness Recovery Action Plans, 144–149
Evidence-based medicine, 69
Evolutionary change, 52–53
Exercise, 270–272
Experiential knowledge, 116
Eye surgery, 81
Facets of social exclusion, 339
Facilitators, 143–144
Fair Housing Law, 84
Fairweather, George, 29, 38–39
Fairweather Lodge, 38–40. See also Lodge model
Families. See also Consumer and family driven
systems
collaboration and, 37–38
community integration and, 235
competencies of, 160–161, 168–169, 172t
initiatives relative to, 30
Family Psychoeducation, 152
Farming, 292–293
Faulkner, Alison, 354
Federici, Matthew, 147, 149
Fidelity, 69
Finances, 236. See also Economics; Funding
First-order change. See Ameliorative change
Fisher, Daniel, 112–113
Flatt, Julie, 325
Flexibility, 297
Focus, 11, 111
Focus groups, 125
Food choices, 60
Formal networks, 54
Foucault, Michel, 355–356
Fountain House, 111
Fourth National Mental Plan (Australia), 340
Framework for Support (Ontario), 11, 42, 218
Framework for Support for People with Severe
Mental Disabilities, A (Trainor and Church),
313
Framework for transformative change
change strategies, 374, 377–381
ecological levels, 374–376, 375–376t
overview of, 374
targeted change outcomes, 374, 382–383
type of change, 374
394 Index

Freedoms, 76–83, 80t. See also Capabilities Hope, 297

approach Hospital Miguel Bombarda, 261
Fresh Start Cleaning and Maintenance, 311 Housing. See also Supported housing
Friends, 168–169, 172t. See also Critical friends community integration and, 212–214, 235, 244
Friends Connection, The, 123–124 poverty and access to, 80–81
Functional competencies, 159–160 reform and, 84
Functioning, 229, 233–235 Housing First program. See also Casas Primeiro
Funding program; Pathways to Housing program
Canada and, 311 applicability and potential for generalization
community-owned research and, 361 of, 267
Connecticut system transformation and, 93t current initiatives and, 30
consumer-run organizations and, 110–111, explicit and implicit values and, 280–282
114–115, 122, 123 in framework for transformative change, 379
cuts in, 5 At Home/Chez Soi, 279–280
regression of, 16 overview of, 15–16, 278–279, 288–290
systems of care and, 91 rethinking implementation of, 282–283
“Taking Culture Seriously in Community tenant choice and, 77
Mental Health” project and, 189, 190–191, treatment-first approach vs., 279–280
198 Howie the Harp, 113
Future of Mental Health, The (Sainsbury Center for Human rights, 165
Mental Health), 342
Future Vision Coalition, 167 ICM. See Intensive Case Management
Identity, focus on strengths and, 32
George Brown College, 294 Illinois, 148–149, 152
Getting to Outcomes model, 183 Illness Management and Recovery, 152
Gladwell, Malcolm, 64 Imagination, 80t, 83
Goals, 82 Imaginative constructs, 66
Government, 315–316. See also Policy Immigrant youth theater, 188
Grassroots organizing, 380 Implementing Recovery (Sainsbury Center for
Grossman, Larry, 42 Mental Health), 336
Grounding in vision and values, 58 Inclusion, 179. See also Social inclusion
GROW, 29–30, 112 Independence, 317
Independent Living Movement, 329
Halfway houses, 30 Indicators of transformative change, 13, 14t
Hard systems thinking, 56 Individuality, 10, 297
Health, 31–32, 80t, 236 Informal networks, 54
Health, Work, and Wellbeing (Department for In My Own Voice, 221
Work and Pensions), 340 Innovation, 379
Hearing Voices Movement, 366, 368 Insane Liberation Front, 112
Helper-therapy principle, 116 Insider roles, 381
Hierarchies of service, 36 Institute for Recovery and Community
Hierarchy, 36, 110 Integration, 149
History Institution Denied, The (Basaglia), 40–41
of Association for Study and Psychosocial Integrated Dual Disorder Treatment, 152
Integration, 257–262 Integration. See Community integration
of community psychology, 24–30, 38–44 Integration opportunities, 209
of consumer-run organizations, 111–115 Intensive Case Management (ICM), 10, 279
of supported education, 292–294 Intensive engagement interventions, 124
of user/survivor participation in research, Interaction patterns, 384
353–354 Interdependence, 58, 70
of Wellness Recovery Action Plans, 141–143 Internalized oppression, 36
HOME, Project, 113 International Association of Peer Supporters, 115
Homeless persons, 30, 76–77, 281–282. See International Classification of Functioning, 229,
also Housing First program; Pathways to 233–235
Housing program International Network for Transformative Change
Homes for Special Care, 311–312 in Community Mental Health, 4, 385–386
Homeward Bound, 113 Intervention, 366, 379
 Ind e x 395

Involuntary treatment, 81 Levers, overview of, 12

Isolation, 365 LHIN. See Local Health Integration Networks
Italy, 40–41 Liberation perspective, in social systems, 36–37
Like Minds, Like Mine campaign, 338, 342
Jackson, Alf, 310 Liminality, 197
Jahoda, Marie, 25 Lisbon, Portugal, 15, 43–44, 77–78. See also
Jason Leonard, 30 Association for Study and Psychosocial
Jobs. See Employment Integration
“John” narratives Lived Experience Research Network, 369
barriers to community integration and, Local Health Integration Networks (LHIN), 189,
239–240 193, 322–323, 325
changing paradigms of functioning and, Location, 237, 379
233–235 Lodge model, 29, 38–40. See also Fairweather
community integration and, 232–233 Lodge
two contrasting, 230–231
Joint Commission on Mental Illness and Mental Maintenance, 31–32
Health, 25 Mais Saúde program, 271
Journey to Recovery, The document, 336 Major mental distress, defined, 174
Júlio de Matos Hospital, 258 Making Recovery a Reality (Sainsbury Center for
Mental Health), 336
Kendra’s law, 81 Malignant positioning, 333
King’s College, London, 363–364 Marginalization, 210–211, 217–218
Kitchener-Waterloo YMCA Cross Cultural McKnight, John, 167
Services, 188 Measures. See Evaluation; Evidence base
Knowledge, 11–12, 106, 355. See also Mechanisms of change. See Levers
Experiential knowledge Media, portrayal in, 36, 221
Kuhn, Thomas, 63–64 Mediating structures, community organizations
KW Counseling Services, 188 as, 15
Medically-oriented perspective on recovery,
Lakeman et al. study on competencies, 154–156t, 228–229
158–159 Mental health, relationship with community
Landlords, 77, 214, 286 psychology, 24–27
Landlord-Service Provider Forum, 214 Mental Health Act, 312–313
Language and terminology. See also “Taking Mental Health Advocacy Coalition, 167
Culture Seriously in Community Mental Mental Health America, 122
Health” project Mental Health and Employment, 336
ESL classes and, 191 Mental Health Association of Southeastern
importance of, 369 Pennsylvania (MHASP), 113, 149
origins of “consumer/survivor” term, 325 Mental Health Commission (United States), 336
power and, 355–356 Mental Health Commission Action Plan, 340
of recovery in policy documents, 327, 335t Mental Health Commission of Canada (MHCC),
use of in this publication, 3, 206 283, 337
use to camouflauge lack of progress, 16 Mental health days, 138
Larsen, Nanette, 148–149 Mental Health Navigators, 191, 197
Larson, Eric C., 144 Mental health workers, proposed competencies
Lavallee, Lynn, 325 for, 166–167, 171t
Law 180 (Italy), 40–41 Mental hospitals. See Deinstitutionalization
Leadership. See also Community leaders Mental illness, rejection of term, 108, 174
consumer-run organizations and, 120 Mental Patients’ Liberation Front, 112
consumer/survivor, 332, 341, 343–344 Mental patients’ liberation movement, 112
continuous and emergent change and, 70 Mental Patients’ Liberation Project, 112
“Taking Culture Seriously in Community Mentorship, 363
Mental Health” project and, 194 Michigan Supported Education Program, 298
Learning organization theory, 57 A Mind That Found Itself (Beers), 112
Legislation. See Policy Missouri Institute of Mental Health, 123, 125
Leisure and recreation, 236 Moncton Housing First program, 284–285, 286
Leveraging for change, 58 Moniz, Egas, 261
396 Index
Mood Disorders Association of Ontario, 318
More Health program, 271
Morgan, John, 6
MT Space, 188
Narratives, 5–6, 230–231
National Alliance on Mental Illness (NAMA),
103, 221, 293
National Association for Rights Protection and
Advocacy, 122
National Association of Peer Specialists, 115
National Coalition for Mental Health Recovery,
114, 122, 380
National Commission for the Reform of Mental
Health Services, 260
National Committee on Mental Hygiene, 112
National Consensus Statement on Mental Health
Recovery (SAMHSA), 341
National Corporate Social Responsibility project,
270
National Institute for Employment and Vocational
Training, 260
National Institute of Mental Health (NIMH), 24
National Mental Health Association, 25
National Mental Health Consumer’s Self-Help
Clearinghouse, 113
National Mental Health Policy (Australia), 340
National Network for Collaboration framework, 183
National Network of People with Mental Illness,
264
National Plan for Mental Health (Portugal), 43,
261
Natural goods, 81
NDP. See New Democratic Party
Nelson, Geoff, 43, 316, 351
Network Against Psychiatric Assault, 112
Network crisis, 215
New back wards, 312
New Democratic Party (NDP), 313
New Freedom Commission, 90, 96, 207, 260, 343
New Zealand
history of community psychology in, 27
policy and, 334–336, 335t, 338, 339, 341, 342
NIMH. See National Institute of Mental Health
NIMHE Guiding Statement on Recovery
(NIMHE), 336
Nonprofessionals, 28–29. See also Community
Normalization Movement, 232
Norms, 384
“Nothing About Us, Without Us” slogan, 95, 114
Novelty, change and, 67
Nurses, public health, 67–68
Nussbaum, Martha, 12, 75–76, 79–85, 80t.
See also Capabilities approach
Oakland Independence Support Center, 113
Offices of Consumer Affairs, 114
Offices of Disability Services, 294
Olmstead decision, 114, 232, 244
On Our Own (Chamberlin), 5, 113, 368
On Our Own (organization), 41, 310–311
Ontario, Canada, 16–17, 41–43, 59–60. See
also Consumer/Survivor Development
Initiative; “Taking Culture Seriously in
Community Mental Health” project
Ontario Coalition to Stop Electroshock, 310
Ontario Ministry of Health, 191
Ontario Peer Development Initiative, 322
Ontario Psychiatric Survivors Alliance (OPSA),
311
Ontario Trillium Foundation, 177, 199
Opportunities, promotion of as principle of
community psychology, 32
Oppression, social power and, 35–36
Organic systems, change as, 65
Organization, consumer-run organizations and,
119–120
Organizational change. See also Association for
Study and Psychosocial Integration
in framework for transformative change,
378–379
to promote policy change, 259–262
theoretical frameworks for, 253–257
through empowerment and collaboration,
262–264
Ornelas, José, 351
Our Lives 2014 document, 340
“Our Turn” conference, 311
Outcomes
ameliorative vs. transformative change and, 11
overview of, 13, 382–383
participatory action research process and, 179f
“Taking Culture Seriously in Community
Mental Health” project and, 179–180, 180f,
184, 187t, 189–190
Out of the Shadows At Last (Standing Senate
Committee), 337, 338
Outsider roles, 381
Ownership, 358
Oxford Houses, 30
Packard, Elizabeth, 112
Paraprofessionals, 29
Parent Management Training- Oregon Model
(PMTO), 184–185
Parkdale community, 42, 311, 312
Parrish, Jackie, 113
Participation
Connecticut system transformation and, 93t, 94f
dimensions of, 237–238
emphasis on, 7
overview of, 7–8
power and, 7
social processes and, 384
 Ind e x
Participatory action research (PAR). See also
“Taking Culture Seriously in Community
Mental Health” project
emergent change and, 70
in framework for transformative change, 380
need for return to participation envisioned by,
358
process overview, 179f
stakeholder participation and, 192
“Taking Culture Seriously in Community
Mental Health” project and, 177–178
Participatory research (PR), 354, 356–357. See
also Research
Partnerships, overview of, 8
Passing strategies, 208, 365
Pathways to Housing program, 76–77, 81, 379.
See also Housing First program
Pathways to Social Inclusion (VICSERV), 339
Paupers’ prisons, 281
Peer counselors, 121–122
Peer providers, 29
Peer relationships, 236
Peer specialists, 115
Peer support. See also Consumer-run
organizations; Consumer/Survivor
Development Initiative
emphasis on, 8
organizational change and, 262–264
types of, 313–314
Wellness Recovery Action Plans and, 147
Peer Support (newspaper), 264
Pennsylvania, 149. See also Mental Health
Association of Southeastern Pennsylvania
Person-centered participation, 237
Person-centered planning, 134
Pets, 83, 84
Phoenix Rising: The Voice of the Psychiatrized
(magazine), 311
Pillars of recovery, 337
Planned change, 381–382
Planned systems change
case examples of, 59–60
community psychology and, 57–59
overview of, 55, 55t, 71–73
role for community psychologists in, 61
strengths and weaknesses of, 61–63
systems, systems thinking and, 56–57
Planning. See also Wellness Recovery Action
Plans
Connecticut system transformation and,
94–97, 95f
consumer-run organizations and, 119–120
for cultural-linguistic communities, 184–185
participatory action research process and, 179f
PMHP. See Primary Mental Health Project
Police, discrimination and, 221
Policy
397
Australia and, 334, 335t
Canada and, 310–316, 320, 335t, 337
consumer-run organizations and,
122–123, 320
England and, 335t, 336
in framework for transformative change,
380–381
New Zealand and, 334–336, 335t
organizational change for promotion of,
259–262
overview of, 14t, 16–17, 333–334, 335t
strategies for implementation of, 345
United States and, 335t, 336–337
Policy-oriented participatory research, 354
Political revolutions, 63
Pomeroy, Ed, 42
Portugal, 15, 43–44, 77–78, 353. See also
Association for Study and Psychosocial
Integration
Post Crisis Plans, 139–140
Poverty, 33, 80–81, 210, 331–332
Power. See also Empowerment
Consumer/Survivor Development Initiative
and, 323–324, 325
cultural-linguistic communities and, 198
importance of understanding dynamics of, 7
recovery and, 333, 342–343, 344
research process and, 351–352, 368
in social relationships, 35–36
“Taking Culture Seriously in Community
Mental Health” project and, 179
user/survivor research involvement and,
354–356, 362
Power/knowledge, 355
Practical reason, 80t, 82
Practices. See Services and practices
PRCH. See Program For Recovery and
Community Health
Prejudice, community integration and, 210–211,
219–221
President’s New Freedom Commission, 90, 96,
207, 260, 343
Prevention, intervention vs., 366
Primary Mental Health Project (PMHP), 28
Principles of community psychology, overview
of, 31–38
Privacy, housing and, 259
Procedural justice, 33
Professional learning communities, 70–71
Professional support, 8
Program for Community Recovery and Health,
364
Program For Recovery and Community Health
(PRCH), 93, 101
Program/staff-centered participation, 237
Project HOME, 113
Project SHARE, 113
398
Proposals, “Taking Culture Seriously in
Community Mental Health” project and,
189, 190–191, 190f
Psychiatric Rehabilitation Center of Boston
University, 293
Public issues, spin and, 36
Public stigma, 220
Punjabi community, 189
Putting People First: The Reform of Mental Health
Services in Canada, 42, 320
Qualitative/narrative methods, 104–105
Quality Improvement Collaborative (QUIC),
97–99, 99f
Quantitative vs. qualitative analytical methods,
362
Queen Street Mental Health Centre (Toronto),
42, 312
Rae, Bob, 43
Randomization, 362
Randomized controlled trials (RCT), 362
Rappaport, Julian, 6, 26
RCT. See Randomized controlled trials
Readiness, employment and, 268
Readiness for change, 58
Reading Area Community College, 294
Reciprocal collaboration, 179
Reciprocity, 238–239, 256
Recognition, consumer-run organizations and,
120–121
Recovery
Australia and, 334, 335t
Canada and, 335t, 337
conceptualizing, 329–330
consumer/survivor involvement and, 332,
340–341, 343–344
consumer/survivor leadership and, 332, 341,
343–344
in context of transformative change, 330–331
defined, 6
diversity in perspectives on, 330
England and, 335t, 336
individual strengths and, 9
interventions for, 377
New Zealand and, 334–336, 335t
organizational change and, 253–254, 265–272,
270–272
origins of, 328–329
overview of, 327–328
policy and, 16
power relations and, 333, 342–343, 344
promotion of as principle of community
psychology, 34
social inclusion and, 331–332, 338–339, 343
stigma, discrimination and, 330, 331, 338, 343
Index
strategies for, 338–343, 339t
two perspectives on, 228–229
United States and, 335t, 336–337
Recovery Attitude Questionnaire, 157–158
Recovery Competencies document, 334
Recovery Institute, 92
Recovery International, 112
Recovery Model Recovery Advisory Group, 34
Red Book. See “WRAP Red Book” (Copeland)
Referrals, 124
Reform, system, 84, 314–315, 318–319
Rehabilitation Act of 1973, 294
Rehabilitation philosophy, 292–293
Relational synergy, 179
Relationships, community integration and,
235–236
Religion, community integration and, 236
Research. See also Evidence base
community-owned, 357–361
on competencies of service providers,
153–162, 154–156t
on consumer-run organizations, 116–118
in framework for transformative change, 380
future directions for, 384–386
history of user/survivor participation in, 353–354
mainstream contemporary participatory, 356–357
overview of, 17
overview of user/survivor involvement in,
351–353, 366–369, 380
power and, 351–352, 368
on supported education, 297–299
supporting academic user/survivor researchers
and, 361–365
on Wellness Recovery Action Plans, 144–149
Resource mobilization theory, 57
Resources
allocation of, 323, 324, 383
power as, 35–36
promotion of as principle of community
psychology, 32
Respect for diversity, 7
Reville, David, 42–43, 325, 381
Revolutionary change, 52–53
Rights, Housing First program and, 278–279
“Rights and Needs” list, 79, 264
Riots, 64
Rogers, Joseph, 113
Role framework, 115
Roles, ameliorative vs. transformative change and,
11–12
Roosevelt, Franklin, 382
Root causes, 58
Rose, Diana, 354, 364
Ruby Rogers Center, 112–113
Russinova et al. study on competencies,
154–156t, 159
 Ind e x
Safety, community integration and, 213
Sainsbury Centre for Mental Health,
342–343
SAMHSA. See Substance Abuse and Mental
Health Services Administration
Santa Maria della Pieta Hospital, 41
Scatter-site model, 77, 209, 288
Schizophrenia, 234–235
Schizophrenics Anonymous, 112
School systems, 60
Scientific revolutions, 63–64
Second Opinion Society (SOS), 360
Second-order change. See Transformative change
Segregation, conundrums of, 241–243
Self-assessment, tool for, 157–158
Self-determination
community psychology and, 7
supported education and, 297
“Taking Culture Seriously in Community
Mental Health” project and, 179
Wellness Recovery Action Plans and, 134
Self-help groups, 110, 112, 121–122,
313–314
Self-managed care, 31–32. See also Wellness
Recovery Action Plans
Self-organizing systems, 66
Self-worth, 82
SEM. See Social ecological model
Sen, Amartya, 75. See also Capabilities approach
Senses, 80t, 83
Service animals, 84
Service-defined lives, 134
Service enhancement, 94f
Service paradigm, 314, 316–317
Service providers
competencies of, 152–153
overview of, 13–15
policy implementation and, 345
required competencies of in transformed
mental health system, 162–165
review of research on competencies of,
153–162, 154–156t
Services and practices, 13–15, 14t
Service User Research Enterprise (SURE),
363–364
SHARE, Project, 113
Sheppard, Marnie, 325
Simon Fraser University, 364
Single-site congregate model, 288
Sleep-outs, 113
Slogans, 95, 114, 338
Smoking, 270
Social activities, 121
Social basis of capabilities, 81
Social conditions, 7, 14t, 15–16
Social ecological model (SEM), 7, 60
399
Social inclusion
ameliorative vs. transformative change and, 10
community integration and, 210–211,
214–216
promotion of as principle of community
psychology, 32
recovery and, 331–332, 338–339, 343
Social innovation, 379
Social justice
ameliorative vs. transformative change and, 10
community psychology and, 7
Housing First program and, 281
planned systems change and, 58
promotion of as principle of community
psychology, 33
Wellness Recovery Action Plans and, 147
Social liminality, 197
Social networks, 238–239, 245–246
Social processes, 383–384
Social relationships, 235
Social Sciences and Humanities Research Council
of Canada, 177, 199
Social support, 8, 120–122
Socioeconomics, 383
Soft systems methodology, 56–57
Soft systems thinking, 56, 58, 61–62
SOS. See Second Opinion Society
Sound Times Support Service, 321
Speaking in Our Own Voice project, 325
Spin, power of, 36
Spirituality, 236
SSI. See Supplemental Security Income
Stability, transformative change vs., 65
Stakeholders, 5, 166–173, 171–173t, 192–193
Statistics, 362
Stein, Cathy, 30
Stigma
capabilities approach and, 83
community integration and, 219–221
consumer-run organizations and, 111
Italy and, 40–41
recovery and, 330, 331, 338, 343
social inclusion and, 33
user/survivor participation in research and,
364
Strengths, 8–9, 32
Substance Abuse and Mental Health Services
Administration (SAMHSA), 113, 117, 123,
146, 299–300
Suburbanization, 246
Supplemental Security Income (SSI), 80
Support. See Peer support; Professional support;
Social support
Supported education
definition and values of, 296–297
history of, 292–294
400 Index
Supported education (Cont.)
issues affecting postsecondary education
completion, 295–296
need for new paradigm in community mental
health and, 301–303
outcome research, 297–299
overview of, 292, 301–303
in process of inclusion and recovery, 267–270
social justice and, 33
systemic issues affecting postsecondary
institutions, 299–301
Supported employment, 33, 152, 259–260,
267–270
Supported housing, 33, 213–214, 265–267.
See also Association for Study and
Psychosocial Integration; Housing First
program
Support systems, competencies and, 160–161
SURE. See Service User Research Enterprise
Synergy. See Relational synergy
System interactions, assessment of, 58
System modeling, 56–57
System reform, 84, 314–315, 318–319
Systems, defined, 56
Systems change, 56–58
Systems of care, defined, 90–91
Systems thinking, 56
“Taking Culture Seriously in Community Mental
Health” project
collaboration and, 182–183, 187t, 190,
192–196
frameworks for, 182–184, 196–197
methodology, 185–186
need for transformative change and, 181–182
overview of, 177–181, 178f
planning and, 184–185, 186–192, 187t
research questions, 185
transformative change and, 197–199
Technical assistance centers, 361
Technical skills, 160, 362
Te Haerenrenga (MHAC), 334, 340, 341
Tenant organizations, 216
Terminology. See Language and terminology
Theater projects, 188
Thoughts, 80t, 83
Thresholds, change and, 64
Thresholds Community Scholars Program, 297
Tipping Point: How Little Things Can Make a Big
Difference (Gladwell), 64
Toronto Supportive Housing Coalition, 42
Toward Recovery and Well-Being (Standing Senate
Committee on Social Affairs), 337
Training, 377–378. See also Education; WRAP
Facilitator Training Manual (Copeland)
Trainor, John, 42–43, 325, 381
Transformation Executive Group, 94–95, 96
Transformative change, ameliorative change vs.,
9–12, 52, 330–331
Transforming Mental Health Care (SAMHSA), 336
Transinstitutionalization, 41, 312
Transportation, 210
Treatment-first approach, 279–280
Treatment types, 12
Tremblay, Jacques, 325
Triggers Action Plans, 137–138
Unemployment, 33
United Kingdom, 67–68, 354. See also England
United States
history of community psychology in, 24–26
policy and, 335t, 336–337, 338, 340, 341, 343
user/survivor participation in research in, 353
User/survivor-controlled research, 354
VA. See Veterans Administration
Values
ameliorative vs. transformative change and, 10
community psychology and, 7
explicit and implicit, 280–282
“Taking Culture Seriously in Community
Mental Health” project and, 179, 180f, 183,
187, 187t
Vancouver Mental Patients Association, 41, 310
Veterans Administration (VA), 24
Veterans of Foreign Wars (VFW), 242
Visioning, 179f, 187
Volunteers, 119
Wallcraft, Jan, 354
WANA. See We Are Not Alone
Warning signs, 138–139
Waterloo Collegiate Institute, 188
Waterloo Regional Homes for Mental Health, 59–60
Waterloo-Wellington Local Health Integration
Network, 193
We Are Not Alone (WANA), 111
Weitz, Don, 310
Well-being, promotion of, 31–32
Wellness, 236, 270–272
Wellness Recovery Action Plans (WRAP)
caveats and cautions of, 149–150
conceptual foundation for, 134–135
crisis plans, 139–140
Daily Maintenance Plans, 136–137
Early Warning Signs Action Plans, 138–139
evidence base for, 144–149
in framework for transformative change, 377
history of, 141–143
key concepts, values, and ethics of, 143–144
overview of, 13, 133
Post Crisis Plans, 139–140
as self-help guide, 32
signs of breaking down and, 139
 Ind e x 401

Triggers Action Plans, 137–138 WRAP Facilitator Training Manual (Copeland),

Wellness Toolboxes, 135–136 142, 143
Wellness Toolboxes, 135–136 “WRAP Red Book” (Copeland), 142
West End Revitalization Association, 358
Whitecraft, Jeanie, 123 Yale, 93, 101
Wilson, Elaine, 232. See also Olmstead decision Yoshino, Kenji, 241
Working for Change, 321 Young et al. study on competencies, 154–156t,
WRAP. See Wellness Recovery Action Plans 157, 161