Down Syndrome 2004

Fundació Catalana Síndrome de Down
Services and Methodology

Title: Fundació Catalana Síndrome de Down. Services and Methodology
Author: Beatriz Garvía. CMD Psychologist and FCSD Coordinator of Research and
Tuition.
Contributors: FCSD Technical staff; R. Borbonès, M. Golanó, M.J. Miquel, M. Peralta, J.
Ruf and K. Trias.
Coordinator: Katy Trias.
Photography: Ivana Gutiérrez and Katy Trias.
Translator: Mary Fons
1st. edition: 1999
2nd. edition (revised and expanded): 2004
Publishing secretary: Núria Boronat
This book was made possible by Caixa Catalunya.
This book may not be reproduced or transmitted in any form, whether in full or in part, by any means, electronic or
mechanical, including photocopying and recording, or by any information storage or retrieval system, without prior
written permission from the copyright holders.
© FUNDACIÓ CATALANA SÍNDROME DE DOWN (FCSD)

Comte Borrell, 201, entresòl, 08029 Barcelona
E-mail: formacio@fcsd.org
Website: www.fcsd.org
Director: Katy Trias
Chair of the FCSD Board: Montserrat Trueta
Cover design and layout: Barcelona Digital, S.L.
Printed by: Barcelona Digital, S.L.
ISBN: 84-921020-5-5
Copyright registration: B-11272-2005
FCSD
INDEX
Foreword to the 2nd edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7
Fundació Catalana Síndrome de Down Board of Directors . . . . . .10
Organization chart . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11
Down Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13
Centre for Child Development and Early Intervention . . . . . . . . . . .17
Mainstream School Support Service . . . . . . . . . . . . . . . . . . . . . . . .25
Social Skills and Preparation Programme -PAS- . . . . . . . . . . . . . . .33
Col·labora, Job Integration Service . . . . . . . . . . . . . . . . . . . . . . . . .41
“I am going home”, Independent Living Support Service . . . . . . . .47
Down Medical Centre . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .53
Tuition and Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .65
External Relations and New Projects Service . . . . . . . . . . . . . . . . .71
Begoña Raventós Data Centre . . . . . . . . . . . . . . . . . . . . . . . . . . .75
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80
FCSD
FOREWORD TO THE 2ND EDITION
5
The second edition of this book was produced on the occasion of the
20th anniversary of Fundació Catalana Síndrome de Down (FCSD),
founded in 1984 by Montserrat Trueta, who had been working for
children with Down Syndrome (DS) and their families since 1978 both in
a private and in a professional capacity. Her co-founders were a team of
professionals and parents. The following year, she travelled with a team
of specialists to Washington University in Seattle, WA (USA) for training,
information-gathering and observation purposes. They returned with a
wealth of new knowledge which they put to use in the Centre for Early
Care and Stimulation which had been set up by the Foundation.
Since then, the Foundation has been growing and expanding its
services, as well as adapting its methods according to emerging needs.
Those new needs arose as the original newborns with DS and other
children with DS or other mental disabilities grew up. The Foundation’s
mission was clear from the outset: to work towards better quality of life
for persons with mental disabilities and secure true integration in society,
based on the idea that quality of life is linked with gains in autonomy,
acceptance of disability, and capacity for self-management. This overall
mission gave rise to the Down Medical Centre; to the Mainstream School
Support Service, developed to support school integration; to the Social

Skills and Preparation Programme, to ensure leisure time and foster the
social skills of its clients; and to the Col·labora, Job Integration Service,
which places clients in mainstream employment, following the model
implemented in Genoa, Italy, which uses a pioneering mediation method.
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The original babies seen in 1984 and the ones that followed (up to a
current figure of 1,000 clients) have now grown up, received an
education and, in many cases, are placed in mainstream companies,
earning wages, enjoying social and affectionate relationships, and
organizing their own outings, travel, and leisure. Sooner or later, they
6
come to want emancipation; they want to live, like their siblings, in a home
of their own. Parents who adhered to our philosophy and who had
already taken the risk of giving their children freedom and autonomy also
supported this endeavour, so Katy Trias, like her mother 17 years before,
travelled to the US and the UK to learn about independent living in those
two countries. Using this information and working with the support of her
team, she set up “I'm going home”, (Me’n vaig a casa), an Independent
Living Support Service to afford individuals with disabilities the chance to
pursue a normalized life, choosing where and with whom to live. The
Programme provides tailored support for clients and their families to
achieve this objective. It was launched on an experimental basis in 2001
and is now consolidated as a FCSD Service receiving government
funding.
The present edition of the Services and Methodology book has been
revised and expanded to include the new Services as well as changes to
existing ones, bearing witness to the dynamism, usefulness and on-going
development of FCSD.
FCSD
INTRODUCTION
The Fundació Catalana Síndrome de Down (FCSD) is a non-profit 7
private organization founded on March 30, 1984 and declared to be of

public utility on October 24 of that year. Its registry number in the Catalan
Government's Registry of Catalan Foundations is 61.
The FCSD was born out of a common interest, shared by parents and
professionals alike, to gain a better understanding of Down Syndrome
(DS) by carrying out research and doing practical work in the fields of
education, psychology, medicine and welfare. From its very beginning,
outstanding international scientists specialized in subjects relating to DS
have given the FCSD their valuable support and on some occasions even
their personal participation, if necessary.
The FCSD technical team is made up of a group of professional

psychologists, educationalists and physicians and a group of scientific
advisors. Its pioneering spirit led the FCSD to be regarded as a
reference centre consulted by a large number of public and private
organizations, both in Spain and abroad. The message which the FCSD
wishes to convey is that people with DS have inherent capacities and are
entitled to obtain resources as appropriate to meet their individual needs
for optimal development.
The FCSD's main goals may be outlined as follows:

● To work for better quality of life for persons with DS, in order for them
to attain full social integration. This aim extends to all persons with
learning difficulties.
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● To act as a permanent body, promoting studies and research in the

medical, psychological and educational fields, and providing the
experience and knowledge thus gained to public and private
organizations, institutions, and to society in general.
8 ● To broaden, improve and create services, which may be deemed

necessary to meet the social, personal, and family demands of
persons with DS. As DS people integrate and participate more
effectively in society, new set of needs arise, which the FCSD covers
by widening the scope of its services.
Acting as a Resource Centre, the FSCD furnishes information and

advice, organizes training courses and other activities, not only for people
with DS but also for their families and professionals working in this field.
The FCSD has been battling for years to achieve full, effective,
favourable social integration for all.
Since 1982 when the Spanish parliament enacted the LISMI (a law
for social integration of people with disabilities), boys and girls with
disabilities have had access to state schools and to mainstream
education. This law has proved highly positive not only for mentally
disabled children but for the rest of the children as well. Students
become more tolerant, show their solidarity and learn about disability. As
a result, they approach their disabled schoolmates in a natural, prejudice-
free way, allowing real integration to take place. The FCSD strives
constantly for the rights of people with disabilities to be safeguarded,

both by pressing for compliance with existing legislation and by lobbying
for new or improved laws to defend and promote the full social integration
of people with disabilities.
Finally, biomedical research on DS is also part of the FCSD mission,

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in the form of constant research per se and regular publication of the

latest findings.
For this reason, the FCSD confers the Ramon Trias Fargas Prize on
DS Research every two years. This prize is awarded for scientific
research or experimental work concerning genetic, perinatological, 9
psychological or medical aspects related to DS. A specialized scientific

committee evaluates entries and decides on the winner. Research must
be carried out within Spanish territory to be eligible. Candidates for this
prize may be individuals or teams, and must have the support of a
scientific or academic institution, or any institution related to DS.

FCSD
FUNDACIÓ CATALANA SÍNDROME DE

DOWN BOARD OF DIRECTORS
Honorary Members of the Board
Victoria de Los Ángeles (RIP)

10
Maria del Mar Raventós
Josep M. Espinàs
Ramon Trias Fargas (RIP)
Francisco Domínguez del Brio
Robert Vergés (RIP)
Members of the Board:
Chair: Montserrat Trueta

Vice-President: Antoni Trias
Secretary: Immaculada Bosch
Treasurer: Carmen Buxeres
Member: Juan Manuel Cabrera
Member: Joan Uriach
Member: Katy Trias
Member: Marta Corachán
FUNDACIÓ CATALANA SÍNDROME DE DOWN ORGANIZATION CHART
BOARD OF DIRECTORS
External advisors
EXECUTIVE DIRECTOR
SERVICE COORDINATION DEPT. RESEARCH AND TRAINING ADMINISTRATIVE

COORDINATION DEPT. COORDINATION DEPT.
DOWN MEDICAL CENTRE MEDICAL & PSYCOSOCIAL FINANCIAL AREA

RESEARCH AREA
CENTRE FOR CHILD DEVELOPMENT TRAINING AND SUPERVISION HUMAN RESSOURCES AREA
AND EARLY INTERVENTION AREA
MAINSTREAM SCHOOL PUBLICATIONS AREA ADMINISTRATION

SUPPORT SERVICE
SOCIAL SKILLS & PREPARATION BEGOÑA RAVENTOS DATA CENTRE

PROGRAMME -PAS-
COL·LABORA, JOB INTEGRATION COMUNICATION AREA

SERVICE
“I’M GOING HOME”, INDEPENDENT

LIVING SUPPORT SERVICE
11
FCSD

12
FCSD
FCSD
DOWN SYNDROME
Down syndrome (DS) is a genetic alteration caused by the presence of

an extra chromosome in the 21 set; for this reason, it is also known as 13
trisomy 21. It was first described clinically by John Langdon Down in 1866.
The extra genetic material alters the normal development of the individual,
affecting certain physical features and intellectual level. Most people with
DS (95%) present the trisomy 21 type called 'free' or 'regular', because
the extra chromosome appears from the outset in all the living cells of the
organism, due to an error in the disjunction of chromosome 21 in the germ
cells of one or both parents. This phenomenon is known as chromosome
non-disjunction. There are other types of DS, such as mosaic DS (where
trisomy only occurs in certain cells) and translocation DS (where
chromosome 21 is attached to another chromosome). Diagnosis of DS is
obtained by means of a chromosome study (Karyotype), which reveals the
presence of the extra chromosome in the 21 set. This type of analysis was
first used by Jerome Lejeune in 1958. More recent discoveries, some of
them sponsored by the FCSD, have shown that there are areas and
groups of genes in chromosome 21 which are specifically related to the
appearance of some of the most significant physical features of the
syndrome.
The precise reasons why the non-disjunction mechanisms that cause

DS are triggered remain unknown, though it has been proven that non-
disjunction occurs regardless of race, education, social background, and
standard of living. However, it has been shown that DS is more likely to
appear when the mother is over 35 years old at the time of conception, with
the risk of bearing a child with DS increasing progressively from age 35
onwards. But paradoxically, DS births occur far more frequently among
women under 35, first, because they are the chief child-bearing group; and
second, because pregnant women over 38 are routinely subjected to
prenatal screening.
Two of the screening methods are amniocentesis (extraction of amniotic

fluid through the abdominal wall between the 14th and the 18th week of
pregnancy) and chorion villus sampling or CVS (extraction of a small piece
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of placental tissue). Both can be used reliably to diagnose DS and other

chromosome abnormalities. Additional methods to determine the risk of
giving birth to a child with DS have been recently incorporated in medical
practice. One is biochemical screening (measuring certain chemicals in
maternal blood, which are altered if DS is present). This test is carried out
between the 14th and the 17th week of pregnancy. Another method is
14
ultrasound imaging, which screens for DS pregnancies by looking for
sonographic markers, especially the nuchal fold; sonograms can be
checked for this from the 10th week of pregnancy. It is important to stress
that these tests should not be regarded as conclusive; if an alteration is
found, amniocentesis or chorion villous sampling must always be used to
establish whether the embryo actually has DS.
Though all DS carriers have a chromosomal aberration, they do not all

present the same characteristics or physical features; malformations are

not even always present. The only distinct characteristic shared by all
persons with DS is a lowered intellectual level. There are no varying
degrees of DS; traits and personality vary as widely among individuals with
DS as among individuals without DS. In fact, people with DS are more
similar to people without DS than different from them. Ninety-five percent
of children with DS present mild to moderate intellectual disability after
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receiving appropriate early intervention. Whatever the case may be, every
person with DS possesses inherent values, which should be nourished.
Children with DS have a 40% rate of heart malformations, some of

them so serious that they will require surgery during the first years of life. A
much smaller number (5%) present gastrointestinal problems that require
immediate neonatal surgery. While many different medical treatments for 15
Down syndrome have been recommended over time, none has proven to
have a beneficial effect on DS so far. Early intervention alone has been
found to be highly useful in stimulating the potential of each individual.
Medical care primarily focuses on prevention of the most likely health
problems to ensure that easily treated conditions do not become chronic.
It must be stressed that DS is not an illness, but a genetic disorder, which
is sometimes accompanied by health problems.
Individuals with DS must be considered from a whole-person

perspective and offered the social assistance, medical care and
educational services best suited to their full personal development.

FCSD
CENTRE FOR CHILD DEVELOPMENT AND

EARLY INTERVENTION
17
The birth of a child entails a series of deep psychological changes
for the parents, connected with their wishes as child-bearers. These
changes usually begin during or even before pregnancy. The baby-to-
be already exists in the parents' imagination before birth. Both parents
imagine a baby in whom they will see themselves reflected. Moreover,
the baby also stands for continuity of its parents' own values. A whole
series of fantasies revolve around the child, to such an extent that they
are part of the initial bond, which the parents create with the baby. After
birth, these fantasies are gradually adjusted to the reality of the
characteristics of the newborn baby. The whole of this adjustment is a
complex process of significant importance for the baby's future
development as an individual.
Faced with the news that the baby has a learning difficulty such as
DS, parental narcissism is struck to the core. The cause is not only the
diagnosis as such, but a whole welter of intense feelings towards the
baby and towards themselves and each other. There is a break with the
previously established bond, and a process of mourning for the loss of
the desired child then begins.
This mourning process is complicated, as it involves breaking the

internal bond with the ideal child and coming to terms with reality, that
is, with the fact of having a child with a disability. It takes a long time,
but it is necessary in order to reconstruct a new internal place for the
real baby, which enables a desire to become its parent. This process
leads to a progressive acceptance of the facts.
Parents find ways to identify with their DS newborn by thinking of

the child as someone who is growing up with his or her own
personality, at a certain rate of development, with a range of
possibilities ahead – in short, someone with an essence of his or her
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own – but also with a family likeness. This will also allow a new set of
fantasies to be created around this baby, so that the parents may look
forward to unexpected gratification from their unexpected child.
When a baby has DS (or any other disability), the idea of disability
is wrapped around the identity of the newborn, preventing parents from
18 seeing the actual infant. Like any other child, a baby with a handicap
needs to be spoken to, to be played with and to be loved, but these
needs are often complicated and hard to fulfil because the parents
wanted a different baby and either cannot approach their child or do not
know how to do so; if they do try, they may do so inappropriately. The
birth of a child with a disability causes a great deal of anguish, and
generates many complex psychological reactions, which vary
according to the nature of the disability or condition, and the factors

that caused it.
Briefly, from a state of shock and anguish, followed by denial ("The

doctors got it wrong"), anger, and sorrow, parents reach a state of
equilibrium; with it emerges a feeling of confidence in their own ability
to care for the child just as it is. Ultimately, the family reorganizes its life
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according to the child's needs and adjusts to the situation. The parents
need to be able to complete the mourning process produced by the
arrival of a child unlike the expected one. All this points to the
importance of early intervention not only for the baby, but for its
parents, too. The intense and complex feelings and emotions
experienced by parents when first faced with the diagnosis of DS
clearly show that reporting this diagnosis is not a single event but a 19
whole process with the dual purpose of imparting the relevant
information and providing a space to contain parental anguish and
emotional reactions.
After the baby's birth, emotional vulnerability arouses of self-doubt

as to parenting ability. At the Centre for Child Development and Early
Intervention (CCDEI), where children with different types of
development difficulties receive care from birth to five years, one of the
main objectives is to provide support to parents in order to facilitate the
early relationship and help them regain their parental self-confidence.
This support is regarded as working with the parents in order to
discover the baby's individual characteristics, observe and interpret its
demands, and seek satisfactory ways to meet the baby's manifest
needs. Every child reacts differently; development will only be seen as
it unfolds.
The CCDEI of the FCSD, is part of the Early Intervention Sectoral

Programme of the Institut Català d'Assistència i Serveis Socials
(Catalan Institute of Social Care and Services), which reports to the
Catalan Department of Social Welfare. The catchment area assigned to
the CCDEI within the programme comprises the districts of Sarrià-Sant
Gervasi (District 5) and Esquerra de l'Eixample (District 2) in the city of
Barcelona. The CCDEI was originally founded as the “Servei d’Atenció
Primerenca” (Early Care Service) of the FCSD in 1984 and
subsequently took on the functions and objectives outlined in the

district-based Early Intervention Programme.
In October 1998, the FCSD service began to operate under

contract to the Catalan Institute of Social Care and Services; as a
result, the assistance provided is now fully a public service. In 2001 the
name was changed to Centre de Desenvolupament Infantil i Atenció
FCSD
Primerenca (CCDEI - Centre for Child Development and Early

Intervention).
Early intervention, a form of treatment basically directed at children

with developmental disorders as well as their families, is intended to
assist in the process of structuring the child's personality, enhancing
20 his or her development, providing the necessary resources for
adjustment and growth, and last but not least, assisting and supporting
the child's family.
The Centre operates as an outpatient clinic, providing assistance on

an individual basis; frequency of visits depends on each child's age and
needs.
The functions performed by CCDEI are outlined below:
1.- Diagnosis of requirements: At the family's request, a diagnostic

process is set up, including interviews with both parents, assessment
of the child's developmental stage, and interviews with the child's
teachers when deemed necessary, if the child attends school. Once
this information is obtained, it is discussed with the parents prior to
beginning treatment.
Basically, the purpose is to establish a functional diagnosis of the

child's problem, and, if possible, to determine the aetiology of the case
when it is undefined.
Tending to the parents is also of paramount importance at this first

contact. As a rule, when they first come, parents are full of anguish and
very uninformed concerning the nature of the problem. The Centre's
professionals provide care for the child and support for its parents in
order to contain the fear and anxiety and help them discover the child
behind the disability.
When the child is older (2-3 years old), the parents' anxiety is by no
means lesser. Not knowing the child's specific problem is a source of
worry and anxiety. Sometimes, a highly unspecific diagnosis that is not
based on an underlying organic explanation may be hard to grasp.
Delayed language acquisition or slow maturity, difficulties in socializing,
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or personality or behavioural disorders all cause highly ambivalent

feelings in the child's parents, who must therefore receive assistance
at the same level of intensity as the child in order to encourage positive
outcomes.
2.- Establishing and implementing treatment objectives: Once an

approximate diagnosis has been established, the aims of therapy are 21
determined and intervention strategies are put in place to reach out to the
individual child.
Treatment approaches can be summed up as follows:
A) Direct treatment
Each child receives individually tailored treatment by a qualified
professional according to the nature of his or her problems. The
interdisciplinary team working at the Centre, which includes
psychologists, education specialists, speech therapists,
physiotherapists, a neurologist, and a social worker, allows
treatment to be individually designed for each case instead of having
a pre-established pattern of intervention
B) Family care
As mentioned earlier, treating the child's whole family is considered
essential from the very first. A key part of intervention is monitoring
family relationships, especially the child's role within the family and
the meaning attributed by the parents to their child's disability or
problem.
C) Mainstream School Support Service

The child's process of adaptation to the school environment is
considered a fundamental element in the social and personal
development of the individual.
The Centre for Child Development and Early Intervention’s follow-up

function therefore has a two fold role:
● On the one hand, the therapist in charge of the case should identify
what kind of needs the child will have in this expanded environment
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22
and evaluate how the child socializes with its schoolmates and
adults. This is done by direct observation of the child, in real-life
school situations, and by interviewing the schoolteacher.
● On the other hand, it is important for school staff to be given support

and advice, helping them to identify the needs and to detect the
differences within a class, and to identify resources to meet these
needs. More often than not, teachers focus on the things a child is
unable to do, and this can be very frustrating for the child, to such
an extent that it may block his or her desire to learn. On some
occasions, this may also lead to a passive attitude — "I don’t know"
or "I can't do it" —, which is actually masking the child’s despair at
the realization that he or she is unable to do the same things as the
rest of the schoolmates. Addressing this situation may give the child
the required self-confidence.
3.- As the FCSD's Early Intervention Service, the CCDEI deals with all
kinds of enquiries from parents who seek early counselling or
information about DS, resources available, where to apply for other
assistance, and so forth.
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4.- Another important CCDEI activity is screening and prevention,

identifying children with developmental disorders or who are at risk,
reaching out to all children within the catchment area so that they may
benefit from CDIAP services whenever they are required.
To this aim, the CCDEI works in many different ways to raise

awareness and heighten professional sensitivity to the importance of 23
identifying any signs of potential developmental disorders as soon as
possible and providing specialised early intervention to prevent future
trouble.
5.- Finally, the CCDEI also provides training for professionals by

holding lectures, courses, and seminars. CCDEI professional staff
members frequently take part in symposia, courses and seminars held
by the FCSD or by other institutions, and they often advise and provide
information to students and fellow professionals on request.

24
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FCSD
MAINSTREAM SCHOOL SUPPORT

SERVICE
25
The Mainstream School Support Service (MSSS) was set up in 1985
in order to provide support and counselling to all children with DS aged 6
to 16 who are attending mainstream schools and guidance to their
schoolteachers and parents. A major milestone for the social inclusion of
people with disabilities was Decree 117/1984 by the Government of
Catalonia, which regulated the structure of special education to ensure the
integration of children with special needs in mainstream schools in
Catalonia according to the guidelines set in the Spanish LISMI Act (the
"Act for Social Integration of People With Disabilities"). In order to provide
a school environment that is as unrestrictive as possible and diversify
school response to individual pupils' needs, schooling objectives must be
generalized so that the child can develop satisfactorily after suitable
curricular adjustments have been made.
Since its founding in 1984, the FCSD has directed all its efforts to
improving the quality of life of people with DS through social integration.
Any action undertaken by the FCSD is the result of elaborate analysis
reached by its team of professionals through careful observation and
evaluation of daily practice. This team of professionals has shown a high
degree of flexibility in its work, so FCSD methodology has varied as
different needs have become apparent. Team methodology has evolved
and specialized over the years in response to identified needs.
Thus, as mainstream schools gradually came to receive more

institutional resources and support, the FCSD turned to other important

aspects of development, such as acceptance of disability, personal
autonomy, the construction of an identity, and the attainment of a certain
degree of maturity, setting the individual foundation for better social
integration. The purpose is not to interfere with the school's
responsibilities, but to concentrate on those aspects which may lead,
with specific care, to a better development of the individual, who will
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therefore adapt more successfully at school, within family, and in

society.
With this goal in mind, the MSSS has devised a working procedure
which relies on groups as a specific resource and a form of therapeutic
intervention to enhance maturity and integration.
26
The service focuses on groups because they provide two major
elements which are considered indispensable in the quest for identity,
namely, acknowledgement of the disability and confirmation of the great
many differences within any group of people with DS.
The group introduces the individual to vital peer-group forms of

relationship ranging from complicity to open confrontation to a desired and
self-built reciprocity; these relationships mould friendships, which play a

major role in the development of the individual
A group of people who share similar personal characteristics (Down

syndrome, in this case) offers all of its members the opportunity to discuss
what it means to each one of them to be an individual with a disability. The
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possibility of sharing disability-related aspects of everyday life, such as

instances of clumsiness, rejection, confusion, speech trouble, and so forth,
enables individuals to express and acknowledge this side of themselves.
Likewise, group members observe, analyse, and come to realize what

each person is able to do, what each person is like, each member's likes
and dislikes, and the different skills and capabilities that they each have. In 27
so doing they become aware of the fact that there are as many differences
among them as in any other group of people: children with DS are also
different from each other.
Analysing similarities and differences is a fundamental element for the

construction of one's personal identity, a fundamental task within a group.
To the extent that individuals can consider the ways in which they are similar
to or different from other people in the different groups they belong to, they
will gradually be able to discover their own uniqueness.
The Mainstream School Support Service of the FCSD has evolved from
individual therapy to its current group therapy approach, though individual
treatment is not ruled out if required. Groups are set up according to
chronological age and individual needs.
When age and disability are similar, group work enables members to
help each other and to express more freely what they feel. It also makes
them aware that there are other people with the same or similar problems,
so they become less inhibited when talking about themselves.
Groups get together to facilitate creative work and to help members

cope with psychological issues. Members feel that they have to cooperate,
to give their own opinions, and so forth, eventually enhancing socialization.
The treatment group establishes firm bonds of friendship which improve
individual and mutual understanding of self and may be carried forth to

other groups.
Belonging to a group is in itself therapeutic and ties in with the healthier

aspects of group membership in everyday life (e.g., sports team, hiking
group, or class). Doing things in the company of others and sharing in a
common task is rewarding and therapeutic per se.
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As mentioned earlier, different types of groups are set up according to

age and needs:
1.- Groups of children aged 7 to 9 have the following goals:
● To contribute to a better self-understanding of each member.

28 ● To develop typical forms of social interaction among children.
● To promote the organization and structuring of personal activities
(symbolic play).
2.- Groups of children aged 9 to 13 have the following fundamental goals:
● To understand and accept their own personal situation.

● To create strategies and develop resources which will help members
find their place in their immediate social and cultural environment and
learn the rules that apply in this environment.
● To help enhance the communication skills of group members.
3.- Groups of teenagers aged 13 to 16 have the following goals:
● To contribute to the development of each individual's personal identity,

including aspects such as age, gender, disability, position within the
FCSD
family and society, and promote an awareness of age-appropriate

references.
● To promote personal and psychological autonomy.
● To influence the teenager's view of the future, encouraging a
reconciliation of possibilities and limitations.
29
Personal identity - defined as self-image - is first moulded by parental

perceptions of the child within the family structure and marked by the place
the child holds in other people's desires. It is important for children to know
whom they resemble, to find the roots that make them part of their family,
of their genealogical tree. This is difficult for individuals with DS. Very often
parents say things like: «DS children all look alike but we don't see any
likeness to anyone in the family». This is because parents have trouble

identifying with a son or a daughter with DS, which makes them feel upset.
Raising a child is a complex matter, so working with parents as their child
with DS develops and grows is a basic priority of the Follow-up Service.
Once a child has found his or her own identity, accepting the
weaknesses and more developed aspects of DS, he or she is in the best
FCSD
conditions for social integration not out of a desire to be like others or to

make comparisons or focus on the things that he or she cannot do or
achieve, but rather from the acceptance of his or her own identity, with its
limitations but also with full awareness of his or her own possibilities.
Peer group work is considered fundamental as it provides a space

30 where children with disability can talk to each other, be listened to, reaffirm
themselves, and say what they think; a space where their personal
experiences can emerge and subsequently, as mentioned, be carried forth
to larger groups and society at large.
Group dynamics and methodology allow a child to join different groups

as he or she develops and matures. Group influence has a direct bearing
on the capacity to feel at ease, enjoy a pleasing social life, use the group's
therapeutic resources, and solve problems successfully.
One of the main advantages of group work is an overall improvement

of interpersonal relationships. Each boy or girl becomes closer to his or her
friends and family and, last but not least, becomes more flexible, in the
sense that he or she can accept and adapt more readily to social and
personal circumstances, and change his or her initial aspirations of, say,
"becoming a doctor".
FCSD
Once the effectiveness of group work had been established, in 1997

the MSSS decided to open group treatment to younger children (5-6 year-
olds). At this age, groups consist of twosomes. The reason is the Follow-
up Programme's main aim, which is to facilitate the discovery of the other
person as an equal. This highly controlled situation helps the child to
understand, take the other person into account as an individual and
socialize with him or her, learn to share and communicate, and realize that 31
there are other children with DS.
The Service also provides individual therapy for children who, for
specific reasons, are unable to adapt to group work.
In addition to all this, the MSSS organizes teaching activities on request

for teachers and professionals.
It also provides guidance and advice to professionals involved in the

child's or teenager's education. Psychoeducational follow-up takes place
within the school with all the professionals involved.
Finally, in conjunction with the Programme Co-ordination Department

and the External Relations Departments, the MSSS deals with inquiries
from parents or from school staff, members of Psychological-Educational
Counselling Teams, and professionals from other organisations. FCSD
experts lecture at school faculty meetings in order to discuss what is
involved in mainstreaming children or teenagers with DS, and how to
handle it.
32
FCSD
FCSD
SOCIAL SKILLS AND PREPARATION

PROGRAMME -PAS-
33
Development and growth of individuals with disabilities are often
hindered by a number of matters which often bear no connection with
intellectual disability as such or with lack of possibilities or potential.
The concept of disability calls to mind thoughts of retardation or

immaturity; because of this, children with DS are as a rule not
encouraged to face the little problems of everyday life, problems they
could probably cope with themselves.
Though training programmes for people with disabilities include

academic tuition and the acquisition of social habits, these remain
incomplete. There is still a gap in terms of teaching people with DS to
solve small everyday problems by using their own practical judgement
and creativity.
To this purpose, the FCSD runs a number of services that work

towards a thorough development of the capacities of individuals with DS
and other forms of mental handicap. The implementation of the LISMI Act
in Catalonia showed that children with DS are able to attend mainstream
schools, a possibility extended to other mainstream social environments.
The expectations of young people with disabilities are changing

significantly. Although few individuals with DS are in regular jobs today,
many young people are getting ready to join the world of mainstream
employment in the near future.
In order to meet their needs, in 1999 the FCSD set up its Social
Preparation Programme (from now on PAS) for young people with
disabilities. It was rooted in other existing FCSD programmes and
activities, such as:
FCSD
● The leisure programme.

● The groups for ages 16-20 in the Mainstream School Support Service.
The admittance of children and teenagers with DS into regular schools

is contributing to full integration in society and in the job market as well.
However, mainstream schools at present still tend to disregard certain
34 issues that are not very academic but which are essential for people with
disabilities to join the adult world, things like getting ready to have a social
life and to face everyday problems. These are the points that the FCSD is
seeking to develop.
Very often FCSD staff have come across adults with disabilities who are
intellectually and academically capable of doing a specific job, but who
have serious difficulties when it comes to accepting rules, getting about

town, expressing their choices, opinions and problems, or socializing with

fellow workers.
Efforts are being made from different spheres so that this type of
training is included in special programmes in order to support young
people, adults, and their families in the process of leading normal lives.
FCSD
A 1985 Organization for Economic Cooperation and Development

(OECD) report on the social integration of people with disabilities stated
that job training is unlikely to succeed unless social preparation is provided.
The report also warned that "protracting school even further cannot be a
solution. The point is not to provide more of a given type of education, but
to change it qualitatively. In this change, special reference must be made to
social aspects and therefore to autonomy. This sort of education is a slow, 35
gradual process beginning at childhood".
According to the OECD's experts, the transition from childhood to

adulthood can be defined by the following characteristics:
● Personal autonomy and acknowledgement of adulthood.

● Active or productive life to ensure economic independence.
● Social relationships and active involvement in society.

● Role change within the family.
The FCSD relies on the PAS programme to help young people develop
in these ways so they will grow ready to join the adult world when the time
comes.
FCSD
The programme offers the group a space for trial and error, a testing
ground where members can go wrong and later learn from their mistakes,
look for alternatives when faced with a conflict so that they can feel control
over their own progress. The overall intention is to help young people feel
capable in ways appropriate to their age so they can claim their rightful
place within the family and in society.
36
The programme comprises the following:
1.- Preparation and training to develop social competencies. Courses.
The Service runs specific training courses at three stage levels:

introduction, consolidation, and maintenance for young people and
adults to develop different skills that enable adult individuals to function
at full capacity in their daily and social lives.
These courses are designed and adapted as the needs of clients who
are joining adult life are gradually identified.
Course examples include Basic Cooking, Independent Travel, Money

Use and Management, or Use of New Technologies. All courses are
run on a 2-hour weekly basis.
2.- Leisure.
Promotion and encouragement of leisure activities that help enhance

social competencies in order to increase the chances of individuals
with mental disability and provide access to different types of leisure
activities offered by mainstream public services.
Convening of youth and adult groups that receive support to choose,

plan and carry out recreational activities in town during their leisure
time.
3.- Participation Area.
Areas are set up in town to encourage settings that lead to social

exchange and relationships.
FCSD
● Punt Cafè. A gathering spot.

● Espai Cançons. Singing and learning together.
● Promotion of holiday activities.
4.- Guidance and awareness.
● Guidance, advice and cooperation are offered to other institutions 37

and/or professional specialists working in this area.
● Care and guidance are provided to parents and potential clients
regarding the participation of individuals with disabilities in society.
● The Service's clients are encouraged to join mainstream activities and
monitored in that context.
The PAS programme operates with these goals in mind:

● Preparing members to acquire knowledge of themselves, of their own

needs and of the role they play within the family and in society,
accepting their limitations, but also being aware of their capabilities.
● Helping to develop social skills.
● Helping to develop awareness of the social environment.

FCSD
● Developing the individual's autonomy, paying attention to psycho-

logical as well as functional aspects.
● Conveying information concerning the rights and duties of every

individual as an active member of society, so as to facilitate real
participation in society.
38
● Increasing the range of possibilities that people with a disability may
have, in terms of various forms of recreation, access to existing
activities in the community (municipal centres, public sports, etc).
● Helping participants to organize their own leisure time.
● Promoting group play and recreation activities, enabling groups of

people with DS to experience leisure activities offered to the public at
large.
● Training volunteers and students in leisure activities and providing

social preparation of people with disabilities.
● Assisting and guiding families and their family members with DS on

matters concerning social integration.
● Guiding, advising and collaborating with institutions and/or pro-

fessionals who work with people with DS.
● Identifying the needs of people with disabilities so as to ensure their

social integration.
● Organizing courses and activities to promote independent living.

What is intended is to give training to people with disabilities, to provide

a realistic experience of how to function autonomously in social and
everyday life.
The PAS service works closely with the other adult programmes (for
housing and job placement) ensuring that clients can interact smoothly with
all FCSD services and encounter the same philosophy and approach
FCSD
everywhere, so that they can mature to become adults and integrate fully
within society.
The PAS is cross-sectional, involving all FCSD services.
In addition to its professional staff, the PAS service also has the
assistance of students and volunteers on a university practicum course. 39

40
FCSD
FCSD
COL·LABORA, JOB INTEGRATION

SERVICE
41
Entering the job market means fully entering the world of adults. This
is a difficult process for anyone, but even more so for young people with
learning difficulties. For them, as for everyone else, work is a human
activity undertaken to address personal, economic and social needs.
Work also means coming into contact with a group of people we are
not accustomed to, heterogeneous people with whom we establish
relationships and ways of communicating completely different from
everyday life.
This new type of relationship is basically co-operation-oriented. Co-

operation implies thinking and acting in collective terms, as a group
member, and it also involves adopting a new role. The workplace may
very well be the place where the individual with learning difficulties first
abandons a passive role as a service recipient ("I am taught and cared
for by others") and takes on an agent role ("I am producing something").
The result of this change of situation becomes apparent and leads to
important changes not only in activities or behaviour (learning capacity,
change of relationships, methodology, specific vocabulary, habits, etc.)
but also in mental attitudes (basically self-esteem). These changes in turn
trigger changes in attitude and behaviour which reveal themselves inside
and outside the work environment.
Experience in the field of job integration has shown that many

mentally handicapped people may find jobs in normal enterprises. But
success in this process hinges on different issues: prior training,
individual skills and abilities, learning capacity, personal habits, and the
capacity to adapt to a new environment. It is a slow process, which on
the one hand requires a solid structure to ensure appropriate training and
FCSD
growth to maturity and, on the other hand, a flexible structure which

should adapt readily to a wide range of individual capacities.
Based on this perspective, and given that FCSD programs and

services are geared to training and advising people with disabilities into
the mainstream, the Col·labora Job Integration Service, was set up in
42
1995. Col·labora is now a service and it is sponsored by the Catalan
Department of Labour.
The ultimate goal of this programme is to ensure successful

workplace integration of people with disabilities in mainstream
enterprises.
The chart below illustrates how the programme functions:
NATURALLY SUPPORTED EMPLOYMENT PROGRAMME

COL.LABORA
Advice and Guidance Service
Training Module
Prevocational Training - Knowledge of oneself

- Training
- Choice making
- Personal image
- Autonomy
- Work and the world of work
Job training
Practical work
Integration
FCSD
The process of job integration consists of two key stages:
● first, training takes place in a normal productive environment, allowing

candidates to become familiar with technologies and work
organization systems that would be impossible to reproduce in a
school or a job-training centre.
● Second, candidates obtain work contracts. This in turn may 43
demonstrate to employers that people with disabilities are a real work
force.
When a candidate applies for the programme Col·labora, a number

of steps are taken:
● Interview with the family to explain the content of the programme.

● Interview with the candidate.
● Assessment of the candidate's skills and abilities.
● Job training course and job search activities.
● Search for employers and definition of targets.
● On-site training through worksite experience.
● Follow-up and assessment of work done during on-site training by
programme staff.
The FCSD professionals responsible for the success of this

programme harness natural support by applying a mediation method in
which they act as brokers between the company and the employee. Their
main task is focused on making the worker's own characteristics
compatible with those expected for the job. Professionals facilitate the
process of integration by encouraging an exchange of views and
information leading to normal conditions for the worker with a disability.
The moment a person with disability begins to form part of a normal

working situation, he or she acquires a new social role (the role of a

worker). People with disabilities who behave childishly and immaturely in
environments that create dependence and overprotection behave quite
differently when they are placed in an environment with role-based
expectations. This concept changes the professional role of those who
tend to their needs. If the aim is for people with disabilities to take on
social roles, professionals are no longer there to give assistance, but to
FCSD
44
mediate in a process that enables distancing, a requisite for adulthood.

Therefore it is no longer a matter of providing care, but of mediating in a
process which will enable candidates to have the necessary space for
adult life.
Thus, a mediating methodology emphasizes the importance of natural

support, giving advice, guidance and other kinds of information to the
candidate's fellow workers and immediate supervisors, who provide on-
the-job training, rather than to professionals not belonging to the
workplace, such as teachers, employment trainers, etc.).
FCSD staff acting as mediators will basically operate in the worker's

immediate surrounding and discuss the following:
● Technical working conditions that may influence the worker's

efficiency to a significant degree.
● Personal relationships with fellow workers. Professionals may take
preventive action, forestalling potential problems, or in case of
conflict, they may advise fellow workers on the best course of action
and provide guidance for the worker to cope with the problem.
FCSD
The mediator works from an objective, logical position that places

positive solutions within reach and thus establishes a pattern of co-
operation so that the example set by fellow workers becomes valid
training for the disabled individual.
Over time, we have observed highly positive progress in many

candidates. These improvements specifically lie in the sphere of 45
autonomy and initiative-taking regarding the technical side of the job,
reducing dependence on fellow workers. Likewise, social behaviour and
responses also improve, rewarding the worker with better acceptance
within the group. Consequently, self-esteem is heightened, together with
an overall improvement of personal satisfaction.

FCSD
“I‘M GOING HOME”, INDEPENDENT

LIVING SUPPORT SERVICE
47
As Katy Trias wrote when she was designing the independent living
Programme, «from ancient times, human beings have felt the need to find
places of their own. Traditionally, however, individuals with mental disabilities
either remained in the family dwelling or else only had access to institutional
settings or group homes, probably because of the mistaken belief that they
could not tell the differences or choose among different options, as well as
over-protectiveness. While living options evolved considerably over the years,
they still consist of external, closed, rigid structures: the individual is expected
to live in a non-chosen community setting where the rules are imposed
externally, rather than self-imposed.
After centuries of confinement to institutions, group homes of varying

sizes and degrees of comfort were set up, usually in the outskirts of towns
and cities. Then came sheltered apartments: functional housing with a small
number of residents who all share some of the housework. Developed as a
result of the drive for more autonomy for individuals with disabilities, the latter
are meant to be “like” a real home. Some of them come pretty close, but they
are not the real thing. Because of their structure, there is considerable
external oversight which in no way respects individual independence. Often,
residents do not even have a say in basic choices affecting their lives
decisions that most people take for granted, such as where they want to live
and with whom.
Now that many of our young people have attended mainstream schools,
are employed in mainstream workplaces and enjoy social integration, their
parents and relatives do not wish them to be confined within group homes of
any sort, but would rather have them enjoy a life that is closer to their own
ideal choice. This does not really constitute a new “model” – rather than a
housing model or a housing option, this new approach is about respecting
every individual’s wishes, about pursuing a way of life that tries to fulfill those
wishes with the necessary support, about making different lifestyles possible.
This new approach is a valid one for any person with a disability, for anyone
who wants to pursue the “dream” of living in a home of their own.
FCSD
A person’s home is not just a place, a bit of space. Home is like a nest;
it is where we feel safe and at ease; the place we have chosen and
decorated ourselves; above all, a place where all rules or restrictions are
self-imposed. We each have control over our own space, our own lives;
we decide who may enter or leave our home and what may happen inside
it. Home is, perhaps, the place where we feel most at ease, where we
have the things that we want or like, and the people we love. This is a
48
basic necessity for everybody, including persons with mental disabilities».
With all this in mind, FCSD set up its Programme for Independent
Living to offer individuals with disabilities the chance to live “in a home of
their own”, including any support or assistance necessary to ensure
safety and peace of mind. The Programme is therefore person-centered
from the start; the whole process is driven by the client.
Traditional residential services, including many programmes in this

country, are designed to provide support and housing as a package;
when the support provided turns out to be inappropriate, clients may be
deprived of their home, as well. FCSD therefore believes that housing
should not be operated by the same body that provides the support; only
if the person with a disability has direct ownership or rental can he or she
be sure not to have to move against his or her will. This is also the only
way to create a sense of “ownership” through having to pay for
household expenses, decorate the rooms, etc.
This was a ground-breaking programme in Catalonia. It’s innovative,

pioneering quality is highlighted by the fact that the individual with a
disability is the main actor in the whole process. At the same time, it relies
on the proven experience gained in similar programmes in the US
(“Home of your own”, originally launched by the University of New
Hampshire and now catering for over 1500 persons in a number of
states) or the UK (the Paradigm scheme), not to mention extensive
literature on the subject.
In 2001, the programme was launched experimentally. It has now

become a full-fledged FCSD Service supported by the Catalan
Department of Social Welfare, which passed Order 6/2002 regulating
and acknowledging this form of support as a way to provide home and
lifestyle choice for individuals with disabilities. This legal text also lists all
current legislation concerning individuals with disabilities (LISMI and Act
21/87) and the regulation of social services in Catalonia (the Catalan Act
FCSD
regulating the governance and registration of Social Services) and is a

further step along the road to full social integration.
The Service is intended for persons with mental disabilities; specifically, in

keeping with the new AAMR definition of mental retardation, it is for adult
persons (over 18) with “significant limitations both in intellectual functioning
and in adaptive behavior as expressed in conceptual, social, and practical
49
adaptive skills.”
Throughout the planning and followup process, the programme is

underpinned and inspired by its pursuit of quality of life as defined by the
individuals themselves, which is ultimately the same as quality of life for any
ordinary citizen. This informs the principles underlying intervention and
determines which indicators will be used during the followup process. Quality
of life is a multidimensional concept that may be defined by consensus
among those who are close to the person who is the recipient of the service;
it entails both meeting basic needs and affording the same opportunities
available to any other person setting life goals or objectives.
Mental disability (equal to or greater than 33%) has to be rated officially

by a public Assistance Center for People with Disabilities before the person
can use the service. Additionally, the individual him or herself must make the
request and this must have the support and approval of the person’s family
and/or legal representatives.
The client must also be able to have access to a home of his or her own,
whether owned or rented in their own name. Legal title to the premises
means that control of the home will not be lost. In order to avoid
discrimination, no specific socioeconomic indicators have been set as
access criteria; the point is that the individual and his or her legal
representatives should be able to manage the expense of keeping up their
home. The Service can advise prospective applicants on this matter.
The third and last requirement is for the client to agree to set up a Circle
of Trust, a number of key persons who will organize around him or her to
provide a web of relationships and whatever support the circle agrees is
necessary. The Service acts as facilitator and matches needs to coverage of
those needs to ensure the utmost safety and welfare of the client. The Circle
will never decide or choose in place of the recipient, who will have nominated
and accepted each Circle member. The Circle meets at varying intervals in
the person’s place of residence.
FCSD
The criteria used to assess the person’s functioning and the influence of
disability on the overall set of abilities and skills displayed will not provide a
single or exclusionary profile of the client. Steps must always be taken to
ensure that needed support is provided, wishes fulfilled and personal
expectations met in full comfort and safety under the Personal Care Plan
developed. Considerable importance is attached to personal and contextual
50
attitudes linked to self-awareness of personal status, requests for and
acceptance of support tailored to specific individual needs, and respect and
support for the person’s own expressed or consensus-inferred decision.
● Methodology
The work of planning home support and developing action plans is

carried out by the team in five main stages:
1.- Client and family members are interviewed to explain how the Service
operates and record every family member’s agreement to carry through the
programme.
2.- Client is interviewed alone or with one trusted companion to initiate

information gathering, emphasising the following points:
● Preferences.
● Problems.
● Things they find difficult.
● How they learn.
● What kind of help they receive.
This may entail a number of interviews at different key places (place of

work, current neighbourhood, neighbours’ homes, etc.).
Depending on the person’s communication skills, interviews may require

the presence of an interpreter, a family member, or a caregiver who knows

them well.
3.- Preparing a place. Assessing socio-economic conditions (to decide on

purchase or rental and identify available resources). Designing the new
home. While the Service may provide assistance in finding a suitable place,
it cannot own the place itself.
FCSD
4.- Designing support. All necessary meetings are held in the person’s place
of residence, and all planning and decision-making is person-centered.
5.- Moving in. The plans are set in motion, the Action Plan is confirmed and
the Follow-Up stage is launched after checking on point such as:
● The new place (are adaptations needed?).

51
● Furniture (does anything need to be changed or adapted?).
● Where things go.
● Filling the pantry (food).
● Home decor.
● Rules for survival, both in terms of safety (use of gas, electricity, water,
locking doors and windows, etc.) and in terms of hygiene (personal care,
food handling, clothes care, etc.).
6.- Adapting to the new situation and establishment of regular support based
on the person’s new routines and wishes.
This launches lifelong follow-up. A person’s needs will fluctuate over time,
waxing and waning back and forth; support must therefore be flexible and
resourceful. The group has a key role in regularly analysing and reviewing the
current situation.
Support is structured following a number of basic principles on the basis

of a plan that is tailored to the person’s situation and which should not be too
technology-oriented.
Specific planning, implementation and follow-up stages are thus defined

for the support element.
● Onset: This begins with the person’s application to join the programme.
Includes whole-person assessment, autobiographical data collection to
identify personal history, identifying personal goals and preparing for

transition. This stage involves a number of interviews with the client, visits
and interviews with persons who have a key role in his or her life, and the
forming of the Circle of Trust.
● Transition stage: Comprises original home location and preparation

decisions and support, getting to know the new setting (neighbourhood),
local resources, and all work done prior to moving in.
FCSD
● Intensive support stage: As soon as the person moves into the new
home, intensive support is allocated to ensure maximum safety and
backup and help design an appropriate Personal Assistance Plan
depending on how he or she is adapting and functioning in the new
environment.
52
● Regular support stage: After initial adaptation and once new habits and
routines are in place, support is gradually phased out down to the level
set forth in the Personal Assistance Plan.
The stages in the process do not have a predefined duration, but depend
on the person’s circumstances and requirements.
Critical stages must be planned for: namely, any foreseeable

circumstance following the onset of the regular support stage that may
change the person’s way of life and require intensive work to redesign the
Personal Assistance Plan.
In addition to the Service’s formal provisions and the hazard prevention

mechanisms agreed for each person, an agreement has been entered with
the Red Cross remote assistance service and the Provincial Council of
Barcelona to ensure round-the-clock emergency assistance tailored to our
clients’ needs and situations.
FCSD
DOWN MEDICAL CENTRE
Ever since John Langdon Down first described the syndrome that was
to bear his name, in 1866, there has been remarkable interest in associated 53
medical problems. In the second half of the twentieth century, the cause of
the syndrome was discovered – namely, the extra chromosome 21.
Molecular cytogenetic studies of chromosome 21 DNA have been under way
since the 1990s.
DS cannot be regarded as an illness, though it is true that people with DS

have a greater tendency to suffer from more or less serious health problems,
especially if not diagnosed or treated at an early stage. They are known to
have a higher rate of congenital malformations, especially heart
malformations; later in life, there is also a higher rate of metabolic diseases
and other conditions. The physical traits and psychological factors most often
associated with DS have also aroused great scientific interest.
The FCSD has always paid particular attention to the medical aspects of
DS, since good physical health is necessary to begin a proper educational
intervention. For this reason, the Down Medical Centre (DMC) was created
in 1987. Although the first Service founded by the FCSD was the Centre for
Child Development and Early Intervention, there soon emerged a real need
for a Health Programme to provide information and ensure full medical care,
at a time when medical information about this syndrome was very little. This
Centre was the first in Spain to give specific medical care to people with DS.
It started out with few physicians and has undergone many changes,
especially in terms of services offered to the public and in the number of
patients. Currently, it is considered a major health care centre for people with
DS, both on account of the number of services offered as for their quality. Its
main function is to watch over the state of health of people with DS, for
preventive purposes. It offers treatment in 18 medical specialities. Well over

1600* persons have been treated, most of them from Catalonia. There are
easily over 2,000 appointments a year.
(*2003 data)
FCSD
54
The DMC provides specialized medical care in the following areas:
Cardiology Neurophysiology Dermatology

Pediatric Dentistry Endocrinology Paediatric
Ophthalmology Dietetics and Nutrition Adult Ophthalmology
Oral Health adult Orthodontics Genetics
Ear, Nose and Throat Gynaecology Paediatrics
Internal Medicine Clinical Psychology Paediatric Neurology
Psychiatry Adult Neurology Orthopaedics and
Oral health pediatric Traumatology
In addition to providing health care, the DMC is involved in disseminating

medical information. In 1986 it launched the still-ongoing publication
Síndrome de Down. Articles i Resums Científics, now expanded and
reformatted under the new masthead SD.Revista Mèdica Internacional sobre
la Síndrome de Down/DS. International Medical Review on Down Syndrome,
to present and update current knowledge of medical aspects of DS and keep
the reader up to date on the most promising developments in basic science
(molecular biology and genetics) and everyday medical practice. It also

addresses psychological and educational aspects of practical interest
because they tie in with medical concerns.
Clinical research is also encouraged by the DMC, which has been

directly and indirectly involved in a number of research projects, especially
since the 1993 TV3 Telethon. Moreover, the DMC serves a teaching
purpose, targeting both health care professionals and parents or other
FCSD
individuals with an interest in the subject. Its research mission has led it to link
up with hospitals, universities and other institutions.
From the outset, the DMC was set up for maximum effectiveness.
Pioneering medical centres caring for people with DS at the time of its
foundation were reviewed, and the original medical staff came to a
consensus and approved an annual checkup schedule involving different
55
specialists and varying with patient age. This was the Health Programme
(PS) first published in Spain within the Butlletí de la Societat Catalana de
Pediatria (1987, 47:33-41), which now covers patients from birth or DS
diagnosis through life.
FCSD HEALTH PROGRAMME FOR CHILDREN AND ADULTS WITH

DOWN SYNDROME AND NO OTHER ASSOCIATED CONDITIONS
The programme is designed according to universally accepted

guidelines for its stated purposes. It is regularly updated in the light of
relevant scientific developments and its own accrued experience,
currently numbering over 1650 cases since 1987. Implementation of this
schedule together with the early stimulation programme ensures that
every participant with DS will reach his or her highest potential.
The health programme provides basic prevention on a separate basis

for children and adults, and is fleshed out with whatever additional
monitoring is required if any other condition is identified.
I – HEALTH PROGRAMME FOR CHILDREN AND TEENAGERS
This comprises all the routine checkups that must be made by

specialists from the first pediatric assessment at the DMC to adulthood
(18 years).
1) BIRTH TO THREE MONTHS
a) Geneticist
● DS diagnosis. Chromosome study using karyotyping or fluorescence
in situ hybridization (FISH) to determine whether it is a regular, mosaic
or translocation trisomy. Family assessment and counselling if
required.
FCSD
b) Paediatrician
General examination of the newborn, with a special emphasis on:
● Screening for congenital cataracts.
● Screening for potential congenital malformations, both external and
internal.
● Hearing examination.
● Thorough checking for metabolic disorders, particularly
56 hypothyroidism.
● Screening for congenital hip dislocation.
c) Cardiologist
● Forty to fifty percent of DS babies have congenital heart disorders, so
a full range of ECGs and other tests are required. The need for
medical treatment or surgery is assessed.
d) Paediatric Neurology
● Examination of muscle tone and neurological function.
● Co-ordinating action with the Early Intervention Programme and other
professionals.
Other tests:
● Karyotyping -FISH-.
● Metabolic screening.
● Cardiac assessment.
● Blood work-up.
● Abdominal assessment.
● Others as required.
2) 3-12 MONTHS
a) Paediatrician
Examination of the baby, with an emphasis on the following:
● Assessment of general condition and nutritional status.
● Genitals; check for undescended testes.
● Initiation and follow-up of the adapted immunization schedule.
● Monitoring of immune status due to a greater tendency to develop
infections, particularly respiratory infections.

● Assessment of skin moisture and flexibility.
b) Paediatric ophthalmologist
● Diagnosis of eye alterations if previously undetected.
c) Ear, Nose and Throat specialist

● General check-up. Children with DS seem to suffer more often from
middle ear infections and wax plugs.
FCSD
d) Paediatric Neurology
● Assessment of psychomotor development.
Other tests:
● Haematological analyses
● Anti-HB antibodies (post vaccine)
● Check of thyroid function
57
3) 1-3 YEARS
a) Paediatrician
Annual assessment of:
● Growth, weight and head circumference according to the specific
tables for DS published by the Fundació Catalana Síndrome de
Down.
● Health and hygiene habits.
● Compliance with immunization schedule.
● Thyroid and haematological functions (due to potential hypothyroidism
and a higher likelihood of certain forms of leukaemia).
● Compliance with immunization schedule (immunoglobulins, etc)
● Annual check-up to screen for errors of refraction (nearsightedness
or farsightedness, etc.).

● Yearly check-up looking for disorders, using complementary tests
such as brainstem evoked response audiometry or tympa-nometry.).
d) Paediatric Neurologist
● Assessment of psychomotor development.
e) Orthopaedist
● Control of walking ability and use of both feet.
● Screening for potential joint dislocations.
f) Dentist
● Teeth: routine prophylaxis.
Other tests:
● Haematological, biochemical, thyroid, and immunological tests,
biennial.
● Assessment of development.
● IgA anti-tissue transglutaminase or anti-endomysium (after 18-24
months).
FCSD
4) 3-10 YEARS
a) Paediatrician
● Growth, weight, and skull circumference, including checking for
obesity.
58 ● Compliance with immunization schedule.
● Thyroid function, biochemistry, and blood work-up.
● Annual or biennial eyesight check-up.

● Yearly or biennial hearing check-up, including associated structures.
d) Paediatric Neurologist
● Assessment of neurological development.
e) Neurophysiologist
● Assessment of sleep disorders.
f) Orthopaedist
● Assessment for atlantoaxial subluxation.
● Check of walking ability.
g) Dentist
● Teeth: routine prophylaxis.
● Orthodontics: as required.
h) Psychologist
● Monitoring of childhood development.
Other tests:
● Cervical spine study.
● Haematological, thyroid and immunological clinical tests. Annual or

biennial.
● IgA anti-endomysium or IgA anti-tissue transglutaminase test (if
previously not studied or repetition at 6-7 years).
● Sleeping Polysomnography.
FCSD
5) 11-17 YEARS
a) Paediatrician
● Thyroid function.
● Routine check-ups for children of the same age.
● Compliance with immunization schedule. 59
● Weight and growth
● Eyesight check-up every two years.

● General hearing check-up every two years.
d) Paediatric Neurologist (<14years old) Neurologist (>15 years old)

● Assessment of neurological development.
e) Orthopaedist
● Regular checks of atlanto-axial joint and others.
f) Gynaecologist
● Assessment of sexual development.
g) Psychologist
● Regular check through puberty and adolescence.
Other tests:
● Cervical spine study.
● Haematological and thyroid clinical tests annual or biennial.
FCSD
II – HEALTH PROGRAMME FOR ADULTS
Comprises routine check-ups after 18 years old.
a) Internist
Annual assessment, especially of the following:
● Weight (obesity).
60 ● Health and hygiene habits.
● Thyroid function.
● Development and sleep issues.
● Immunization status (Td, influenza, pneumococcal).
b) Psychologist
● Yearly examination.
c) Neurologist
● Neurological assessment: every 5 years up to age 40, then annually.
d) Orthopaedist
● Regular general check-ups.
e) Other annual check-ups:

● Dentist
● Gynaecologist
f) Other 2-yearly check-ups:

● Ophthalmologist
● Endocrinologist
g) Other 5-yearly check-ups:

● Cardiologist
Other tests:
● Haematological, thyroid and immunological clinical tests, as required
and evolution.
FCSD
III- FREQUENTLY-NEEDED MEDICAL SPECIALTIES NOT

INCLUDED IN THE PREVENTIVE MEDICINE CHECKLIST:
● Dietetics and Nutrition

● Endocrinology
● Dermatology
● Gastroenterology
● Psychiatry 61
● Orthodontics
● Haematology
As far as research is concerned, the fundraising telethon campaign

organized by TV3 (1993 La Marató de TV3), aimed at securing a better
understanding of chromosome 21 dysfunction, and preventing and
alleviating the effects produced by the excess chromosomal material,
enabled the FCSD to compile the first specific database on DS. This
database consists of 17 groups of data, one for each speciality. They
include all the relevant medical data of the more than 1,600 case histories
of the Down Medical Centre (CMD)*. This database has proven to be a
highly valuable tool to further knowledge of some medical conditions and
thus enable preventive action for specific health problems. It is the
world's largest DS-specific database of its kind, and has thus drawn the
attention of other institutions related to DS. It has also enabled the FCSD
to plot the first specific growth charts for DS in Catalonia. With data
gathered over twelve years, the FCSD was able to chart normal growth
curves for DS, distributed by age and gender. Weight, height and skull
circumference are measured regularly up to age 17. The data are split
into two groups aged 0-3 and 3-17 respectively. These charts are of
great value for paediatricians and can be requested free of charge from
the FCSD.
With the remainder of the funds obtained from the La Marató de TV3
telethon, the FCSD sponsored the following research projects:
● Gene mapping of various regions of chromosome 21. Various genes

in the 21q11.2 region have been identified, including DSCR1 (the
first specific gene in this region leading to DS traits), MNBH, c21-
LRP, WRB, SH3BGR and others. In addition, genes from other
regions which may be directly or indirectly linked with DS have been
identified, as well as some of the proteins they express.
(* 2003 data)
FCSD
● Potential indirect diagnosing of chromosome error in male and

female germ cells has also been studied. Sperm testing using FISH
and detection of the extra chromosome in the 21 pair have been
done for parents of children with and without DS. It has been shown
that some parents of children with DS tend to present errors in the
sperm cells. This study may allow diagnosis of chromosome
alterations in sperm prior to in vitro fertilization.
62
The short term useful projects are those ones; also there are others
that should also be mentioned:
● The database was also used for a comprehensive study of the most
frequent disorders affecting adults with DS; the case histories of 200
people kept at the CMD were used as a sample. Through this study,
prevalence rates have been identified for a number of health problems
that were not previously apparent.
● A comparative study was done for over 270 children and adults with
DS using new technologies such as fluorescence in situ hybridization
(FISH), molecular studies (DNA), PCR and CGH. The frequency of
appearance of certain variations in the structure of chromosome 21
and of other specific cases of DS has thus been established.
Surprisingly, some cases do not present trisomy but do present DS
features. Phenotype/genotype correlation was also studied.
● Microsatellites were used to study 151 cases of DS. This made it
possible to determine the paternal or maternal origin of the extra
chromosome in the 21 pair, and at which phase of cell division the
error occurred.
● Transgenic animals with chromosome alterations in the region
homologous to where the extra chromosome appears in DS were
bred and studied.
● There was a study of lipoprotein E4, thought to foster trisomies.
● Studies were also made of genes and proteins, such as GAPDH, aB-
chrystalline, Bcl-2 and Bcl-xL, which play an active role in cell division
and cell death.
● The spatial distribution of chromosomes within the cell nucleus was
studied, along with its active role in the mechanisms of chromosome
non-separation (nondisjunction) and its parental origin.
● The cause of nondisjunction of chromosome 21 was determined
using new technologies in a high-prevalence population; phase of
onset was also determined.
FCSD
More recently, research collaboration agreements have been reached

with a number of university and foundations.
● The effects of Donepezil as a first-line treatment for individuals with DS

and Alzheimer's disease are being investigated. This drug has been
shown to have beneficial effects for some dementia cases.
● A study of adult DS brain metabolism assessment using PET (Positron
63
Emission Tomography) was performed and the presence of areas with
lowered metabolism was demonstrated.
● Study and assessment of visual capacity and quality in adults with DS.
● A study of celiac disease in children with DS, a frequent co-occurrence
in which the body does not tolerate the gluten found in certain types of
cereal.
● A study of upper GI tract motility, especially of the oesophagus, in adults
with DS.
● An assessment of sleep disorders, a frequent occurrence in children
with DS.
Besides the services mentioned above, the Down Medical Centre offers
parents of children with DS every manner of advice and support, so that they
may make the necessary decisions for the sake of their child's physical and
mental health. Therefore, one of the DMC's special services is Clinical
Psychology. This service includes treatment for people with DS and their
families.There are many reasons why parents come for an interview, and
these vary according to age and personal or family circumstances. Some
parents seek advice on particular issues of their child's development (school
integration, trouble relating to others, when and how they ought to tell their
child about the disability, age of puberty and adolescence, sexuality, wish for
parenthood, etc.). Other cases may call for a psychological diagnosis, in
order to assess the need for psychotherapy, often for personality or
behavioural disorders requiring treatment. Finally, siblings, parents or
grandparents may require family counselling and guidance in some cases.
Needless to say, the Clinical Psychology service operates in close

collaboration with the rest of FCSD services. If a child or young person
taking part in any FCSD programmes (PAS, Job Integration, Mainstream
School Support Service, etc) shows any signs of disorders which call for
diagnosis and treatment, they are referred to the Clinical Psychology
Service for care.
FCSD
DMC professional staff also work closely with each other. If a

specialist deems the intervention of another specialist necessary, he or
she will immediately contact this specialist either personally or in writing,
in order to care for the physical and psychological well-being of the
person.
Finally, the DMC promotes general information for parents and

64
teachers alike. This is done by organizing lectures regularly on various
aspects of DS. Research is another major concern, which is promoted
by awarding prizes and organizing scientific sessions.
FCSD
TUITION AND TRAINING
One of the aims of FCSD is to serve as a reference centre for

professionals, parents and family members. Therefore, acting as a 65
Resource Centre, FCSD runs a Tuition and Training Service open to

families, professionals and people interested in DS issues. The team is
made up mostly of professionals working in the FCSD and professionals
from other institutions specialized in a specific issue so as to ensure the
best quality in any activity organized concerning DS.
PROFESSIONAL TRAINING ACTIVITIES
Courses and seminars are organized and taught every year on a regular
basis.
Open Classroom. This is a basic training course, intended to bring

together all professionals involved in the school integration process.
The course aims to give information and training on the needs that a
child with a disability may have in a regular school.
Case Discussion Seminar - Guidance and Counselling. This seminar

uses case studies contributed by course participants to assess the
variety of psychological and educational techniques that may be used
to address problems in different stages of schooling. This course is
open to teachers, educationalists, psychologists and professionals
working in ordinary schools or special education schools. Each

participant presents a case, which is then discussed and analysed from
a theoretical and practical perspective. References and material are
provided for each case as required.
Seminar on catering for diversity in secondary school (grades 7 to 10).

Secondary-school professionals discuss their experience regarding
FCSD
children with special educational needs (NEE), the organization of a

curricular adaptation unit (UAC), integration, and so forth.
Seminar on language in children with DS. Ways of fostering language

development in school are discussed. The theory of language
development is used as a framework for discussion and analysis of
66 language in the child with DS in order to come up with resources and
strategies which may be useful for everyday school life.
Since 2002, this seminar is also being taught as an open learning

course hosted by the Universitat Oberta de Catalunya (UOC).
International Conferences. FCSD regularly organizes conferences on

DS. They are basically a means of disseminating information on DS-
related matters. Up until 1997, all conferences dealt with both medical
and psychoeducational issues. Due to the enormous interest of these
two fields, it was decided to separate them by alternating the contents;
separate conferences are now held on alternating years since 1997.
Thus, the International Congress on Chromosome 21 and Medical
Research on DS was held in 1997. The Congress allowed scientists
and DS specialists to exchange information and discuss the latest
advances in DS. Participants included a wide spectrum of experts,
from laboratory researchers to specialized physicians.
In addition to the regular courses and conferences outlined above,

other teaching activities are organized by the FCSD as needs or
interest arise.
PUBLICATIONS
SD. Revista Mèdica Internacional sobre la Síndrome de Down. DS.

International Medical Review on Down Syndrome. A pioneering
publication intended for pediatricians, other physicians and other
interested individuals. It is regularly sent to all pediatricians in Spain
and to other physicians, professionals or parents on request. Total
FCSD
67
circulation is 16,000 copies, 4,000 in Catalan and 12,000 in Spanish

(including individual subscribers and Down Syndrome-related
associations in Latin America). It is available online from 2002 in
Catalan, Spanish and English and indexed in EMBASE/Excerpta
Medica and Índice Médico Español (IME).
Its chief interest lies in the fact that, as well as being the
mouthpiece of the FCSD Down Medical Center and providing
information on its activities and methods, it routinely includes two
original medical papers (one research study and one case review)
along with one article covering issues of psychology, education, and
existing models for mainstreamed life choices. The underlying idea is to
include both organic and psychological aspects to present the person
as a single, whole entity.
PRACTICUM TRAININGS
Practicum agreements are in place with the following universities:
● University of Barcelona. Educational Science Division of the Schools
(*2003 figures)
FCSD
of Education and Psychology. School of Library Science and

Documentation and School of Psychology.
● Autonomous University of Barcelona. School of Educational Science.

Social Educator Diploma. School of Education and School of
Psychology.
68
● Universitat Ramon Llull. Blanquerna School of Psychology, Education
Science and Sports. Fundació Pere Tarrés (operator of the University
Schools of Social Work and Social Education of Universitat Ramon
Llull). Social Education Diploma.
● Universitat Oberta de Catalunya (UOC). Psychology, Psychology &

Education, and Education Science.
Guidance and support are provided for research papers

(dissertations, projects, etc.) produced by schoolteachers, university
lecturers and students in Catalonia, in Spain, or abroad.
WEBSITE
The FCSD has a website that is highly dynamic and open to user
participation. Users usually ask about medical and psycho-educational
topics and come from all over Spain and Latin America.
FAMILY-ORIENTED ACTIVITIES
Parent encounter group: For parents of people with DS, facilitated by

two therapists and designed to foster sharing and thinking around the
personal experience of having a child with a disability.
Seminars for parents:, A variety of theoretical content is taught and

opinions are exchanged among parents of people with DS.
Sibling group: For siblings of children with DS to share their personal

experiences and perspectives.
FCSD
LECTURES
The FCSD regularly holds lectures and talks for professionals and
family members. At least three lectures are held during the school-year,
two of them health-care-oriented and one focusing more on psycho-
educational aspects. 69
Lectures and talks on issues related to DS or disabilities at large are

also given year-round at schools, institutions, workplaces, etc., on
request

70
FCSD
FCSD
EXTERNAL RELATIONS AND NEW

PROJECTS SERVICE
71
The Service for External Relations and New Projects was created
in 1998 to develop FCSD commercial and marketing activities; to co-o
rdinate, structure and launch awareness campaigns; to facilitate co-
operation with other institutions; and periodically to evaluate the need
for new projects. This Service operates jointly with General
Management and works in close co-ordination with professionals in
other FCSD services.
The External Relations and New Projects Service manages the

following activities:
1.- Awareness campaigns: regarding the right to normalization and full

social integration of people with DS and other disabilities, using:
● Internet vehicles (website, banner ads).

● TV (spots and special programmes).
● Radio (advertisements and interviews).
● Press (advertisements and articles).
● Public and private official ceremonies (promoting the services of the
FCSD).
This new marketing policy serves a twofold purpose. Firstly, from an

informative and practical point of view, it is aimed at making the public
more aware of the aims and philosophy behind the FCSD. Secondly, in
FCSD
terms of commitment, it is aimed at arousing solidarity for our cause,

collecting funds for financing new projects, and obtaining volunteers,
assistants, and students willing to collaborate in some of the FCSD's
activities.
72 2.- Publishing service: This service aims to use publications to promote

new trends found in educating children, youth and adults with
disabilities, as well as psychological, educational, medical and genetic
advances. In order to achieve its aims, this service encourages FCSD
professionals to publish the analysis and methodology used in everyday
practice. Foreign-language articles which may be of interest to are
reviewed and sometimes translated and published. In addition, the
proceedings of all the International Conferences regularly organized by
the FCSD are always published.
3.- Encouraging mutual collaboration: with either local, national or

international institutions so as to coordinate joint activities. Some of
these activities are:
● Joint promotion of campaigns to increase awareness and collect

funds.
● Organization of training courses for families, professionals or
institutions, according to demand. Institutions may be in Spain or in
a foreign country.
● Promotion and fund-raising for research projects which may be of
interest to physicians, geneticians, educationalists and

psychologists. Demand has increased considerably since the 1993
TV3 telethon La Marató de TV3.
● Co-publishing of the most recent studies in the field and
methodological aspects considered most relevant to our aims.
FCSD
4.- New Projects: the main aim of the service in this regard is to run
preliminary studies and ultimately design new services, research projects
and dissemination schemes in order to strengthen the capabilities and
technical knowledge of FCSD. New Projects operates in close
coordination with the Programme Coordinator.
73
Its functions are:
● Studying FCSD research needs.

● Investigating new ideas which may lead to the creation of new
services, research projects, and dissemination schemes.
● Establishing and supervising FCSD information channels, library
procedures, and so forth, to keep FCSD up to date on technical
matters.
● Supervising the development of methods and procedures for report
creation, documentation, and course organization.
● Establishing institutional relationships.
One of the functions of FCSD is to be on the alert to understand the

needs of the families or professionals. Through joint studies between
the Programme Co-ordinator and the corresponding service, FCSD
investigates and assesses the need and the practicability of starting a
new project by following a specified procedure: needs study, feasibility
study, economic study, and search for a sponsor.
5.- Information Service: The prestige earned by FCSD over several years
since its creation has led it in recent years to become an important point
of reference in Latin American countries for many newly created
institutions, for parents who have just had a baby with DS, or simply
parents seeking specific advice. To meet their requirements, the
International Relations service was created within this department to
FCSD
provide information to anyone in need of it. The web site has brought on
a spate of new inquiries.
Much of this demand comes from Latin America. Information seekers

range from people wishing to create a Centre or an Association for
74 people with DS, or simply individuals seeking specific advice for their son
or daughter. Other inquiries come from professionals, students and family
members. There are many requests for general information about the
FCSD, about specific aspects of DS and about intervention types and
methodological issues. Meetings are held every quarter, inquiries are
grouped by similarity and answered, and in some cases, they are dealt
with in person when parties spontaneously choose to come to us.
Many inquiries are received via e-mail, largely from Latin America and
from other parts of Spain (Galicia, Andalucía, the Canary Islands, etc).
Last but not least, FCSD wishes to establish and maintain a bond with
the families of people with DS, to learn about their experiences,
concerns, goals and needs. For it is they who drive and motivate our
actions, our striving for change and the new services FCSD is constantly
offering. Finally, the disinterested help offered by many parents towards
our common cause is deeply acknowledged.
FCSD
BEGOÑA RAVENTÓS DATA CENTRE
The Begoña Raventós Data Centre (BRDC) specializes in all forms

of disability. It holds an updated stock of 4,909 books, 5,262
catalogued and updated magazine articles, 284 audio tapes, 956 75
videotapes, 97 subscriptions to specialized journals, and 4,280 articles

from other catalogued sources (2003 data). For its size and wealth of
information on DS, this centre is unique in Spain. It began operating in
1985 as a donation made by Mr. Jesús Raventós of the Begoña
Raventós Information Service book collection.
Since then, the collection has been constantly expanded and

updated to include audio, video and other media. The catalogue has
been automated to increase points of access and speed up searches.
Relevant articles from reviews are constantly selected and indexed for
easy public access. For people who live far away, or who find the
opening hours unsuitable, a special service arranges for information to
be sent directly. All these activities are backed up by dissemination
activities to make people aware of existing resources. The Centre is
also in constant contact with associations, federations, academic
institutions, hospitals, etc.
Since the Data Centre complements the materials available in

university libraries, university lecturers regularly refer their students to
the centre. For this reason, it receives inquiries from people studying to
become teachers, nurses, psychologists, educationalists, speech
therapists, physiotherapists, or social workers, as well as professionals
and school psychologists team preparing lifelong training sessions or
seeking disability-related information on issues pertaining to school,

employment, psychology, medicine, law, personal development, leisure,
social services and assistance, etc.
Objectives
● To provide specialized information in order to support research and
the daily work of professionals, parents, and students in the field of
disabilities.
FCSD
● To contribute to the initial and continued education of students and

professionals.
● To support FCSD activities and courses: the Master's Degree in
Early Intervention, the Open Classroom, conferences and seminars.
76 1. The Begoña Raventós Data Centre collection
As mentioned earlier, the centre holds over 5,000 monographs

specializing in the issue of disabilities.
The Periodicals section stocks over 250 different journals and

bulletins, 100 of them currently subscribed to. Besides, many relevant
articles from journals are recorded and catalogued; there are over
3,500 articles currently available from the centre 's database. A general
press section collects articles printed in Spanish daily newspapers
since the late 1960s.
Also, more than 5,000 pamphlets including conference abstracts,

offprints, etc. are recorded and catalogued.
The video library stocks over 300 different videotapes which may be
viewed in the library or borrowed for use as a visual aids for talks,
debates, special training or other activities.
There is also a collection of audiotapes which record the

conferences and seminars organized by FCSD.
Other specialized items include posters, charts and the

programmes of seminars and conferences. The information contained
in these items has been collected over more than 20 years.
The Centre obtains most of its material through purchase, exchange

or donations. The Centre's relationship with international institutes
interested in the issue of disability enables it to keep abreast of the
latest material published in this field, as several publications are not
distributed through the normal channels and are produced in small
volume.
FCSD
2. Services for the users
The BRDC is open to the public: visitors have free access to the
library and may also use the photocopier, borrow tapes, research
material, find bulletins listing abstracts or recent acquisitions and
search the online catalogue over the Internet.
77
3. On-site browsing
The BRDC is open to anyone interested in disability. Material is

available for direct browsing. Videotapes can be watched, audio tapes
heard, and there is even an online service for Internet-based catalogue
searches.
The catalogue is automated for easy searching. All material listed in

the catalogue are available in the centre. Searches cover all printed
material: books, articles from reviews and bulletins. Documents and
information can be located either through standard bibliographic
reference searches (by author, title, publisher) or by using descriptors,
keyword searches or full-text searches. Staff will readily help users to
ensure a prompt and successful search.
4. Internet Catalogue Searches
The Centre's automated catalogue can be searched at

www.fcsd.org. Documents may be searched by title, author, other
responsible parties, subject descriptors, language, etc. Free-text
searches for any word in the catalogue are also possible.
This service provides round-the-clock access to the Data Centre

wherever the user is located. It also enables users to request
documents using the bibliographic search service, as long as current

legislation concerning use and restrictions is observed.
5. Photocopying
A self-service photocopier is available to users who require copies

of parts of documents. Current legislation concerning the use and
FCSD
restrictions applying to this service must be observed.
6. Bibliographic search service
This service makes printed documents available without having to

come to the library. Document photocopies may simply be requested
78 via letter, fax or e-mail.
The request must be sent to the BRDC address, specifying title,

author and number of pages. For journal articles, the name of the
journal, issue number and year must be added. All photocopies are
sent cash-on-delivery.
7. Audiovisual lending service
The BRDC has a wide range of videotapes dealing with various

forms of disability (physical, mental and sensory). This material is highly
suitable for use in talks, lectures and seminars or for initial contact with
disabled people, to get used to how they express themselves and how
they behave. It also enables professionals to learn about educational
experiences and tasks performed by other professionals and
institutions.
Tapes come from various countries and may contain films, debates,
documentaries, general information, workshops, etc.
Videotapes may be viewed in the library or borrowed for a fortnight.

The lending service is also available for people who live far away and
cannot come to the Centre in person.
8. Table of Contents Bulletin Service

This bulletin photocopies the contents page of each of the reviews

received in the library.
It is published every two months and comprises all issues of journals

received during this period. It is sent by regular post, except for the first
issue, which is sent cash-on-delivery to pay for the yearly subscription
fee.
FCSD
Photocopies of articles listed in the bulletin may be requested by

letter, fax or e-mail stating the full title of the article, author, number of
pages, journal name and issue number and year. This service is paid
separately for every request sent to the BRDC.
9. New Books Bulletin Service

79
This bulletin lists all the new books coming into the library. It is
published every three months and is sent to subscribers who pay a
subscription fee.
It contains the bibliographic references of all new books as well as

their subject descriptors and summaries.
10. Activities with other institutions
Acting as a documentation centre in association with Spain's Real

Patronato de Prevención y de Atención a Personas con Minusvalía, the
BRDC forwards the biannual publications catalogue of the Real
Patronato to more than 200 disability-related organizations and
institutions based in Catalonia. This catalogue may also be consulted at
the centre.
The BRDC also collaborates with the Escola Universitària Jordi

Rubió i Balaguer de Biblioteconomia i Documentació (which trains
librarians and archivists) by allowing third-year students to use the Data
Centre as a site for guided work experience.
FCSD
ACKNOWLEDGEMENTS
The FCSD wishes to express its deepest gratitude to all institutions,

80
public and private, collaborating institutions, members, enterprises and
private individuals for their support and financial aid, since without it our
tasks and projects aimed at improving the quality of life of the disabled so
that they attain full social integration at all levels, in school, employment
and society, would not be possible.
Every idea, every new project, every extension of a service, or of a

proposal needs financial aid. The FCSD could not function without this
support.
Our heartfelt thanks to all.


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Fundació Catalana Síndrome de Down

Services and Methodology

© FUNDACIÓ CATALANA SÍNDROME DE DOWN (FCSD)

Foreword to the 2nd edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

FOREWORD TO THE 2ND EDITION

Support Service, developed to support school integration; to the Social

The Fundació Catalana Síndrome de Down (FCSD) is a non-profit 7

private organization founded on March 30, 1984 and declared to be of

The FCSD technical team is made up of a group of professional

for optimal development.

The FCSD's main goals may be outlined as follows:

● To act as a permanent body, promoting studies and research in the

8 ● To broaden, improve and create services, which may be deemed

Acting as a Resource Centre, the FSCD furnishes information and

constantly for the rights of people with disabilities to be safeguarded,

Finally, biomedical research on DS is also part of the FCSD mission,

in the form of constant research per se and regular publication of the

psychological or medical aspects related to DS. A specialized scientific

Fundació Catalana Síndrome de Down

FUNDACIÓ CATALANA SÍNDROME DE

Victoria de Los Ángeles (RIP)

Members of the Board:

Chair: Montserrat Trueta

SERVICE COORDINATION DEPT. RESEARCH AND TRAINING ADMINISTRATIVE

DOWN MEDICAL CENTRE MEDICAL & PSYCOSOCIAL FINANCIAL AREA

MAINSTREAM SCHOOL PUBLICATIONS AREA ADMINISTRATION

SOCIAL SKILLS & PREPARATION BEGOÑA RAVENTOS DATA CENTRE

COL·LABORA, JOB INTEGRATION COMUNICATION AREA

“I’M GOING HOME”, INDEPENDENT

Fundació Catalana Síndrome de Down

Down syndrome (DS) is a genetic alteration caused by the presence of

The precise reasons why the non-disjunction mechanisms that cause

Two of the screening methods are amniocentesis (extraction of amniotic

of placental tissue). Both can be used reliably to diagnose DS and other

Though all DS carriers have a chromosomal aberration, they do not all

present the same characteristics or physical features; malformations are

Children with DS have a 40% rate of heart malformations, some of

Individuals with DS must be considered from a whole-person

Fundació Catalana Síndrome de Down

CENTRE FOR CHILD DEVELOPMENT AND

This mourning process is complicated, as it involves breaking the

Parents find ways to identify with their DS newborn by thinking of

according to the nature of the disability or condition, and the factors

Briefly, from a state of shock and anguish, followed by denial ("The

After the baby's birth, emotional vulnerability arouses of self-doubt

The CCDEI of the FCSD, is part of the Early Intervention Sectoral

subsequently took on the functions and objectives outlined in the

In October 1998, the FCSD service began to operate under

Primerenca (CCDEI - Centre for Child Development and Early

Early intervention, a form of treatment basically directed at children

The Centre operates as an outpatient clinic, providing assistance on

The functions performed by CCDEI are outlined below:

1.- Diagnosis of requirements: At the family's request, a diagnostic

Basically, the purpose is to establish a functional diagnosis of the

Tending to the parents is also of paramount importance at this first

or personality or behavioural disorders all cause highly ambivalent

2.- Establishing and implementing treatment objectives: Once an

Treatment approaches can be summed up as follows:

C) Mainstream School Support Service

development of the individual.

The Centre for Child Development and Early Intervention’s follow-up

● On the other hand, it is important for school staff to be given support

the required self-confidence.

4.- Another important CCDEI activity is screening and prevention,