Twenty-five Years After ADA Passage: What Story

Does the Data Tell?

by Valerie Bradley, Mary Lee Fay, Cathy Ficker-Terrill, Stephanie
Giordano, Kerri Melda, Drew Smith, and Renata Ticha

In 1990, the Americans with Disabilities Act (ADA) was enacted to break
down barriers to employment, transportation, public accommodations,
public services, and telecommunications for individuals with disabilities. Its
enactment illustrates our nation’s obligation and commitment to reject
discrimination based on disability, and to support participatory community
lives for all individuals. In this article, we describe two national research
efforts – the National Core Indicators and the Personal Outcome
Measures® – and what their data tell us about the performance of service
systems and the outcomes they generate for people with intellectual and
developmental disabilities (IDD) in employment, choice and rights, and
community participation. It tells us where we’re at 25 years after passage of
the ADA.

The National Core Indicators Program

The National Core Indicators (NCI) program is a voluntary effort by state

developmental disability agencies to evaluate their performance using a
common nationally validated set of measures. The effort began in 1997 and
is coordinated by the National Association of State Directors of
Developmental Disabilities Services (NASDDDS) in collaboration with the
Human Services Research Institute (HSRI). NCI includes a set of more than
100 standard performance measures (or “indicators”) in areas such as:
employment, rights, service planning, community inclusion, choice, health,
and safety. NCI uses four main surveys to collect this information – an in-
person Adult Consumer Survey as well as three mail-out surveys to families.
Currently, there are 42 states (including the District of Columbia), and 22
sub-state entities participating in NCI. The information presented here
reflects data from the 2012-13 Adult Consumer Survey data collection
cycle.1

The Personal Outcomes Measures®

In 1993, the Council on Quality and Leadership (CQL) introduced

the Personal Outcome Measures® (POM) that includes 21 outcomes grouped
in three factors: (1) My Self – personal, physical, and environmental
outcomes; (2) My World – connectedness and life in the community; and (3)
My Dreams – discovery, choice, and self-determination. The POM is a valid
and reliable tool that can be incorporated in human services systems for
people of all ages receiving mental health, aging, and/or IDD services. It
focuses on the choices and control people have in their lives. It is an
instrument for evaluating quality of life for people, and the degree to which
organizations individualize supports to facilitate outcomes. The data
included here are drawn from interviews conducted with individuals
receiving IDD services from organizations (or funded through State
agencies) participating in CQL’s accreditation processes in 2013. A total of
350 agencies are currently CQL accredited.2

Employment

In 1990, the ADA recognized the importance of employment not just for its
economic benefits, but as a central component of living an engaged life.
Today, employment remains a central issue for individuals with IDD.
Recent data illustrate that people with IDD are underemployed, and lack the
vocational choices and benefits afforded to others. NCI data from 2012-13
show that employment rates for people with IDD remain stagnant at around
15%, and of those employed, only 3% work an average of 35 hours or more
per week. Only one-quarter receive paid vacation or sick time. Data
collected by POM indicate that in 2013, only 43% of participants identified
as having a choice of where they work, with only 34% of those having
supports to make the choice.

For people with IDD, making sure an integrated employment goal is in their
service plan is an important step to finding employment. NCI data show two
and a half times as many people who had a job in the community had an
integrated employment goal in their service plan.

Outcomes in a number of domains in both NCI and CQL show significant

differences for those who are employed compared to those who are not.
Those employed reported higher rates of satisfaction and respect, more
expanded and interactive relationships, more autonomy, higher rates of both
choosing and realizing personal goals, and greater participation in
volunteering and community activities. Further, those who were employed
cited fewer instances of feeling afraid in their homes and were less likely to
feel lonely. As suggested by the ADA, these outcomes show that the
benefits of being employed extend far beyond economic self-sufficiency to
the ability to lead a more fulfilling life.
 Choice and
Rights

NCI Adult
Consumer Survey
data over several
years indicate
that the overall
rates of choice
and decision-
making related to
where people
live, work, and
what they do
during the day differ greatly by residence type, with those who live in their
own home reporting the greatest amount of choice compared to those living
in an institution, community residence, family home or foster care. Those
who reported having some input in choices, such as where and with whom
they live, their daily schedule, and how they spend their free time, tended to
show higher rates of satisfaction with where they live and what they do
during the day. CQL POM data indicate that 70% of interviewees say they
exercise their rights. Figure 1 illustrates the impact of being able to decide
where one lives, and Figure 2 the impact of being able to exercise one’s
rights on outcomes such as participating in the community or feeling
respected.

Community Inclusion

The ADA insists that community participation is a right for ALL citizens. In
general, CQL and NCI data reveal that most people receiving services take
part in community activities. CQL’s most recent data indicate that
individuals participating in the community are more connected to natural
support networks, perform different social roles within their communities,
have friends, and have higher rates of intimate relationships. NCI data
indicate that nearly all respondents went shopping, ran errands, went out to
eat, or attended religious services in the past month; most reported doing
each of these activities 3-4 times per month. Having access to transportation
is key to an individual’s ability to access the community. Not surprisingly,
those who report always being able to get to places where they want to go
report going out in the community at higher rates and more frequently
throughout the month.
NCI data
reveal that
individuals
who use aids to
move or are
non-
ambulatory are
less likely to
access
transportation
at any time and
to engage in
community activities. While 89% of those who were fully ambulatory
reported going out to eat in the past month, 80% of those needing some
support did so; similar findings were true for going out shopping, on
errands, for entertainment, to religious practice, and for exercise. These
findings exemplify that though most people have basic access to community
activities, there are still barriers, particularly for those who require more
assistance.

Concluding Remarks

Twenty-five years after enactment of the ADA, the correlation between

employment, choice, rights, public access and community participation
remain evident for people with IDD. Positive outcomes in one area
influence positive outcomes in others. Data from 2013 illustrate that those
leading lives with more choice, control, and public access are achieving
more self-defined personal outcomes. The ADA, in combination with other
national efforts (e.g., Employment First Initiatives, advocacy initiatives,
HCBS waiver reforms, self-determination movement), has led to great
system reforms and achievement of personal outcomes. Yet, much work
remains. While data illustrate high percentages of individuals with IDD
participating in community life, employment statistics for people with IDD
remain depressingly low, and choice and control are still not present for a
significant portion of the population.

The NCI and CQL assessment initiatives serve an important role in

providing reliable and valid data to monitor and evaluate the outcomes as
well as experiences of people with disabilities in U.S. society. The findings
provide systematic evidence about the way ADA has been followed and
implemented over time to improve the lives of persons with disabilities.
This should suggest to policymakers, advocates, and others that while
progress has been made, there is still a long way to go before people with
IDD enjoy all of the promises of the ADA.
Notes
1
All data from National Core Indicators (2012-13), Adult Consumer Survey
Data. Additional information at http://www.nationalcoreindicators.org.

2
Additional information on the Personal Outcome Measures® and its data is
at http://www.c-q-l.org.

Valerie Bradley is President, and Stephanie Giordano is NCI Project

Coordinator, with the Human Services Research Institute, Cambridge,
Massachusetts. Mary Lee Fay is Director of National Core Indicators with
the National Association of State Directors of Developmental Disabilities
Services, Alexandria,Virginia. Cathy Ficker-Terrill is CEO and President of
the Council on Quality and Leadership (CQL), Chicago; Drew Smith is
Director of Research and Data, and Kerri Melda is Vice President of
Research and Product Development, CQL, Portland, Oregon. Renata Ticha
is Research Associate with the RTC on Community Living, Institute on
Community Integration, University of Minnesota. For questions about the
article contact her at tich0018@umn.edu or 612/624-5776.