Beruflich Dokumente
Kultur Dokumente
Fundació Catalana
Síndrome de Down 21
SERVICES AND
METHODOLOGY
FIFTH EDITION
REVISED AND EXPANDED
FUNDACIÓ CATALANA SÍNDROME DE DOWN
©Rosa Borbonés ©Marta Casellas ©Beatriz Garvía ©Inés Jover ©María José Miquel ©Màrius
Peralta ©Josep Ruf ©Katy Trias ©Mònica Vázquez, for the original edition.
©Mercè Busquets ©Mar Cabezas ©Joana Castro ©Ramon Coma ©Adela Fernández ©Beatriz
Garvía ©Cristina Herreros ©Inés Jover ©Màrius Peralta ©Josep Ruf ©Dolors Torres ©Katy Trias
©Mònica Vázquez, for the present edition.
Photography: Ivana Gutiérrez, Katy Trias Trueta, Raquel González and Núria Calvet.
Cover photography: Quim Roser
This book may not be reproduced or transmitted in any form, whether in full or in part, by any me-
ans, electronic or mechanical, including photocopying and recording, or by any information storage
or retrieval system, nor abstracted in a digital system, without prior written permission from the
copyright holders.
© FUNDACIÓ CATALANA SÍNDROME DE DOWN (FCSD)
Comte Borrell, 201, entlo. 08029 Barcelona
general@fcsd.org
www.fcsd.org
Director General: Katy Trias Trueta
Chair of the Board of Trustees: Montserrat Trueta
3
INDEX
Introduction 5
Foreword To The Fifth Edition 7
Fundació Catalana Síndrome De Down 11
FCSD Board of Trustees 16
Flowchart 17
Down Syndrome 19
Centre For Child Development and Early Intervention 23
School Support Service 29
‘Connect’ Activity Service 33
‘Collaborate’ Integrated Employment Service 39
‘I’m Going Home’ Independent Living Support Service 47
Down Medical Centre 53
Therapeutic Care Service 65
Family Support Service 73
Teaching And Training 77
Research 81
Department Of Communication 83
Begoña Raventós Data Centre 87
Awards 93
Acknowledgements 95
Recommended Reading 97
5
INTRODUCTION
I
t is a great pleasure for me to bring our Foundation closer to our
readers with this book, which is intended to provide a clear refection
of its philosophy.
Back in 1984, when people with disabilities were rejected, segre-
gated, secluded and deprived of opportunities, a group of parents sup-
ported by professionals made it possible, through their will and courage,
advanced ideas, nonconformism, and clarity of vision, to design a differ-
ent future for their children, a future full of hope. Their actions laid the
groundwork for this Foundation. Since then, through constant learning
and hard work by all those involved, the Foundation has developed and
refined its approach over the years, and evolved into its present form.
Thanks to the Foundation, quality of life has improved for many
individuals with Down syndrome (DS) and for many other people with
intellectual disabilities (IDs), as well as their family members. This has
been achieved by designing and implementing preventive health care pro-
grammes for individual wellbeing, and by providing services that span
a person’s whole lifetime, from birth to old age, with inclusion as the
touchstone.
Experience shows that this approach is best for the person in that it
fosters personal growth and enables individual fulfilment; but it is also the
best course for society at large, which benefits by experiencing diversity
and helping future generations develop ever higher levels of awareness,
understanding and solidarity.
Together we have come to learn that there are no limits to a person’s
possibilities, and we now realize that the needs and wishes of individuals
with Down syndrome are ultimately the same as everyone else’s.
6 Fundació Catalana Síndrome de Down
By writing this book and through the daily work of our professional
team, we seek to spread the word and convey how important it is to build
confidence and provide support for each person to find their own place in
society, and to support their families so that they will not feel alone in their
struggle to achieve this aim.
We also hope to provide students, professionals, and the interested
public with information about our services and our approach – derived
from our focus on the person – in order to achieve a better general under-
standing of human diversity.
Readers are therefore encouraged to peruse this text critically and
reflectively, and to share any relevant contributions.
I cannot conclude this introduction without a special word of thanks
to all the companies, organizations and volunteers who contribute to our
work, and most especially to our team at the Foundation for their persever-
ance and dedication in striving to achieve our purposes.
I also thank the authors who have jointly contributed to this book.
Finally, I would like to extend my gratitude to the families who rely
on us and who drive for change; and above all, I must thank people with
disabilities themselves, who truly struggle on a daily basis and teach us to
build a better future for all.
Katy Trias Trueta
Director General
7
T
his book’s fifth edition is coming out on the heels of Fundació
Catalana Síndrome de Down’s thirtieth anniversary celebrations.
From those early days in which the Early Care Service and the
Down Medical Centre (CMD) were being set up, the Foundation has
evolved and expanded considerably, reaching out to increasing numbers
of people and providing a far broader range of services. It is fair to state
that we now serve people with Down syndrome (DS) in every area of
their lives while also serving their families.
The CMD is one of the world’s leading medical care centres for
people with DS in terms of both patient numbers and quality of care, ow-
ing to the stability of its team of physicians and their years of extensive
experience with DS. The CMD’s mission centres on health surveillance
and preventive care, health-related research, and education for physicians,
other professionals, parents, and any person with an interest in the topic.
In the sphere of psychoeducational care and welfare services, the
Foundation has created new services and activities over time and con-
solidated existing ones, in response to emerging needs. The incipient ser-
vices and activities described as new developments in the foreword to the
preceding edition of this book are now fully established and very well
received by our clients. They include the ‘I’m Going Home’ Independent
Living Support Service, the Family Support Service, and the Therapeutic
Attention Service, which currently provides therapy for children with DS
and autism spectrum disorders.
Beyond peer-group work, the School Support Service has expanded
its offerings beyond peer groups to include music, theatre, study tech-
niques, and activities that develop cognitive and communication skills to
enhance school learning. Additionally, our website (www.fcsd.org) now
8 Fundació Catalana Síndrome de Down
has a new section with educational resources made freely available to the
public. All contents are adapted to the educational needs of children and
adults with DS, and are frequently added to or updated.
Our range of training courses for people with disabilities has been
expanded in response to their interests and needs, and some of our work-
shops have been opened up to people without disabilities. Additionally,
we have set up a community mediation and participation programme to
encourage inclusiveness in training and education offerings available in
Barcelona. In the sphere of inclusive employment, we currently focus on
finding new employment opportunities and on providing training in basic
competencies required for a variety of potential jobs.
Old age remains a challenge, and we have set up a psychological
stimulation programme to help preserve and improve certain brain func-
tions and enhance quality of life in old age. Our commitment to health
care for older people with DS has also led us to sign a contract with Hos-
pital de la Santa Creu i de Sant Pau to promote early screening and care
for Alzheimer disease.
Training of professionals and education of family members remains
an important priority. In addition to courses, seminars and quarterly lec-
tures, we now have ‘What You Need to Know: Strategies for Raising a
Child with Down Syndrome’, a parenting seminar and encounter group
for parents of children up to six years of age.
Over its 30 years of existence, the Foundation has expanded its
range of services considerably and committed to preserving its founding
spirit: to strive always for improved quality of life for people with dis-
abilities and their families, and to promote their independence and self-
reliance.
Supporting people with DS in their path to self-determination
means that they do not want to be seen by society as passive subjects who
need to be cared for in the best possible manner. Instead, we strive so that
each person can grow into an active role in society, we encourage them to
FOREWORD TO THE FIFTH EDITION 9
take a central role in their own lives and we strive to ensure that they will
be able to arrive at their own decisions in daily life and develop their own
life project.
In line with these principles, the Foundation has set up working
groups on human rights for anyone interested, in order to provide infor-
mation and raise awareness of human rights and how they are upheld. We
have also set up Èxit21, a blog for people with intellectual disabilities to
be used as a media outlet. This groundbreaking project will both contrib-
ute to the education of the blog editors and become the main communica-
tion vehicle for the Foundation itself.
For this aim to be achievable and real, we know that it is extremely
important for the services and activities that we offer to always take into
account the need for inclusion and participation in the community. At the
same time, our methods must be chosen wisely and carefully, paying par-
ticular attention to the way we offer support to ensure that it is minimally
intrusive and fully safeguards the person’s privacy and dignity.
Our intervention model is based on mediation and natural support,
using methods that put existing available resources to use. The purpose of
FCSD staff is not to take over the roles or functions of other agents in the
community, including teachers, fellow workers, friends, neighbours, and
others; instead, we provide guidance to optimize a relationship that builds
positive role models and fosters inclusion. Exchanges of information and
views that are conducive to normalcy are the key to successful inclusion.
Màrius Peralta
Technical Director for External Relations
11
FUNDACIÓ CATALANA
SÍNDROME DE DOWN
F
undació Catalana Síndrome de Down is a non-profit private
foundation established on March 30, 1984, and declared to be of
public utility on October 24 of that year. Its registry number in
the Government of Catalonia’s Registry of Catalan Foundations is 61.
The Foundation was born out of a common goal, shared by parents
and professionals alike, to gain a better understanding of Down syndrome
(DS) through research and practical work in the fields of education, psy-
chology, medicine, and social welfare. Outstanding international scientists
have provided valuable support and personal involvement in its work. The
Foundation takes the basic stance that people with DS or other intellectual
disabilities (IDs) have inherent capabilities and are entitled to receive re-
sources proportionate to their individual needs in order to optimize their
development.
Our mission is to improve quality of life for people with DS or
other IDs by enabling their full social inclusion and making it possible
for them to achieve the highest possible degree of dignity, respect, self-
determination and wellbeing.
Our principles and values are the following:
• We want to work towards a society for all, with equal opportu-
nities, equal treatment, and nondiscrimination for people with
IDs. Our concern for the wellbeing and the rights of persons
with disabilities is based on the Universal Declaration of Hu-
man Rights, which states that people with disabilities must be
able to exercise their civil, political, social and cultural rights on
equal terms with all other citizens.
12 Fundació Catalana Síndrome de Down
• We aim for society at large, people with IDs, and their fami-
lies to share our outlook on people with disabilities as active
individuals able to manage their own lives with the requisite
individually tailored support. We work to secure for them the
highest possible degree of autonomy, independence, self-deter-
mination and wellbeing, with a bearing on society and project-
ing into the future.
• We strive for social change, for inclusive and mainstreaming
policies and actions, and for social and economic policy that
embraces disability as an added dimension in people’s lives,
rather than splitting it off as a separate policy category.
• We value diversity as a source of social wealth and opportunity.
We strive for a society with greater solidarity, in which all indi-
viduals are considered socially useful.
• We believe that the family and the community are the best natu-
ral settings for any individual’s personal development. We want
to particularly acknowledge the efforts made by the families of
people with IDs and offer them all the support they may require.
• In our work with people with IDs, we strive for an integrated ap-
proach (including health care, education, psychology and social
work) that is individually tailored at every stage in life, from
infancy through childhood, adolescence, young adulthood, ma-
ture adulthood and old age, and which fosters their participation
in society.
• We lead research on DS internationally and spread global aware-
ness of relevant biomedical breakthroughs. We concur with the
World Health Organization when it states that health is not only
the absence of disease but also ‘a state of physical, mental and
social wellbeing’.
FUNDACIÓ CATALANA SÍNDROME DE DOWN 13
OBJECTIVES
A) To set up, expand and improve services deemed necessary in
order to address known and emerging needs.
B) To serve as a standing body for biomedical, psychological,
educational and social research, study and training. Our bien-
nial Ramon Trias Fargas awards recognize scientific research
on DS, and we also hold a yearly competition that recognizes
secondary-school research papers on people with DS in order
14 Fundació Catalana Síndrome de Down
Inclusion International
Honorary Trustees::
Trustees:
FLOWCHART
BOARD OF
TRUSTEES
Quality External
System Advisory Board
Research DIRECTOR
Committee GENERAL
Training
Committee
ADMINISTRATIVE COMMUNICATION
TECHNICAL SECTION
SECTION SECTION
Family Support
Library
Service
DOWN
MEDICAL SERVICES
CENTRE
FINANCIAL TECHNICAL
RESEARCH AND COMMUNICATION
MANAGEMENT DIRECTOR FOR
HEALTHCARE
EXTERNAL
MANAGEMENT
RELATIONS
CDIAP
19 specialties
Collaborate’ Integrated
Employement Service
DOWN SYNDROME
D
own syndrome (DS) is a genetic alteration caused by the pres-
ence of an extra chromosome in the 21 set; for this reason, it
is also known as trisomy 21. It was first clinically described
by John Langdon Down in 1866. The excess genetic material in DS
alters normal development, affecting certain physical traits and intel-
lectual ability. Most people with DS (95%) have free trisomy, or regular
trisomy: a full extra copy of chromosome 21 is present in every body
cell from the outset because the two copies of chromosome 21 in one
parent’s germ cell failed to separate. This phenomenon is known as
chromosome nondisjunction. There are two other types of trisomy: mo
saic trisomy (in which the extra chromosome is present in some cells
only) and translocation trisomy (in which either a full copy or a piece of
chromosome 21, in the case of DS, is attached to another chromosome).
DS is diagnosed with a type of chromosome study called a karyo-
type, which reveals the presence of the extra chromosome 21. Karyotyping
was first used for DS by Jerome Lejeune in 1958. More recent discover-
ies, including some resulting from research sponsored by our Foundation,
have demonstrated specific links between some regions and groups of
genes in chromosome 21 and some of the characteristic physical features
of the syndrome.
The precise triggers of the nondisjunction mechanisms that cause
DS remain unknown, although it has been scientifically proven that non-
disjunction occurs at the same rate regardless of race, level of education,
social status, social environment or income level. The only substantiated
link is with maternal age; DS has been shown to arise with a greater likeli-
hood when the mother is over 35 years old at the time of conception, with
the risk of conceiving a child with DS increasing progressively from that
20 Fundació Catalana Síndrome de Down
Ultrasound imaging carried out after the seventh week of pregnancy uses
sonographic markers, especially nuchal fold translucency, to help identify
DS pregnancies. Screening tests are not diagnostic of DS: if an alteration
is found, amniocentesis or chorion villus sampling are needed to establish
whether the embryo actually has DS.
Though all people with DS have chromosomal aberrations, they do
not all present the same characteristics, physical traits, or malformations.
The one thing they all share is diminished intellectual ability.
There are no varying degrees of DS: traits and personality vary as
widely among individuals with DS as they do among individuals without
DS. After receiving appropriate early intervention, 95% of children with
DS have mild to moderate mental retardation, and whatever their level of
intellectual attainment, 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 require surgery in infancy and childhood. A
much smaller number (5%) have gastrointestinal malformations that re-
quire immediate neonatal surgery.
While many different medical treatments have been recommended
over time, no drug intervention has so far been proven to have a benefi-
cial effect on DS. Early educational intervention alone has been shown to
be highly useful in stimulating each individual’s potential. Medical care
primarily focuses on preventing the most likely health issues, to ensure
that easily treated conditions do not become chronic. DS is not an illness,
but a genetic disorder that is sometimes accompanied by health problems.
Individuals with DS must therefore be considered from a whole-person
perspective and offered the welfare support, medical care and educational
services best suited to their full personal development.
23
CDIAP*
T
he Centre for Child Development and Early Intervention (Centre
de Desenvolupament Infantil i Atenció Precoç – CDIAP) spe-
cialises in providing a range of interventions targeting young
children aged 0 to 6 years along with their families and other people
around them, with the aim of addressing any temporary or permanent
needs experienced by children with development disorders or at risk of
developing them.
The CDIAP was first set up (under a different name) within Fun-
dació Catalana Síndrome de Down in 1984 and later took on the functions
and objectives set forth in the Early Intervention Sectoral Programme of
the Government of Catalonia.
Operating under its current name, the CDIAP is now a component
of the Early Intervention Sectoral Programme of the Catalan Institute of
Social Care and Services (Institut Català d’Assistència i Serveis Socials –
ICASS), operated by the Government of Catalonia’s Department of Social
Welfare and the Family. Since August 2008 it serves children living in the
city of Barcelona within District 2 (Esquerra de l’Eixample and Sant An-
toni neighbourhoods) and District 5 (Sant Gervasi, Tres Torres and Putxet-
Farró neighbourhoods).
In October 1998, the service began to operate under a contract
with ICASS so that care is now provided as a government service, free
of charge. Since January 2004, early childhood intervention services are
regulated in Catalonia under Decree No 261/2003, which establishes early
intervention as a universal right for all children in Catalonia who need it,
from conception to 6 years of age.
The purpose of early intervention is to contribute to structure the
children’s personalities, foster their development, provide the resources
necessary for adaptation and overall growth, and help and support their
families at all times. Prevention and screening are also part of the CDI-
AP’s remit, as our full range of intervention covers the antenatal, perinatal,
postnatal, infancy and early childhood periods.
CENTRE FOR CHILD DEVELOPMENT AND EARLY INTERVENTION 25
2. INTERDISCIPLINARY THERAPEUTIC
INTERVENTION
• Psychological support
• Speech and language therapy
• Pediatric physiotherapy
• Social work: receiving, informing and advising families
• Hydrotherapy
• Psychomotor development groups
• Symbolic play groups
• Language and communication groups
• Neuropaediatrics
T
he School Support Service was set up in 1986 to improve social,
educational, and psychological conditions for school inclusion
of children with Down syndrome from preschool through sec-
ondary schooling.
The Service works with all participants in the inclusion process: the
child or teenager with Down syndrome, the child’s family, the school, and
other agents in the education community.
Our commitment to addressing new demands made by parents and
professionals means that the Service is constantly adapting. For instance,
we have tackled the use of new technologies, developed new teaching
resources, and set up new groups for psychological support and speech
therapy.
METHODOLOGY
DIRECT SUPPORT
• Parent groups
• Sibling groups
33
‘CONNECT’
ACTIVITY SERVICE
T
he Foundation’s ‘Connect’ Activity Service was set up by merg-
ing our former Adult Education and Leisure services in order to
provide broader and more comprehensive support for non-work
activities. Offerings include skill building and knowledge enhancement
as well as recreational activities.
We define free time as time unconstrained by work, time that is not
framed by duties and obligations, so that each person can use it however
they choose to. The very fact that its use is free and voluntary is a source
of fulfilment and an end unto itself.
The quality and quantity of leisure activities experienced away from
home and work is very important: by triggering interactions, life experi-
ences and learning, it has a tremendous impact on quality of life, particu-
larly in terms of emotional wellbeing and self-determination.
The right to leisure is, in our view, a universally acknowledged so-
cial conquest. Article 30 of the UN Convention on the Rights of Persons
with Disabilities, adopted in December 2006, enshrines the right to par-
ticipate in recreational, leisure and sporting activities. Moreover, we agree
with UNESCO’s position that lifelong learning is the best way to promote
the right to equality. In this context, lifelong learning is defined as a pro-
cess of education throughout a person’s lifetime.
It is clear to us that, in order to enjoy quality leisure time, a person
needs to acquire skills and abilities that enable a maximum of independ-
ence and self-determination.
‘Connect’ offers people a chance to decide what to do with their
free time and whom to spend it with. Possibilities include both learning
and recreational activities.
34 Fundació Catalana Síndrome de Down
OBJECTIVES
• Enjoyment of high-quality leisure
• Development of self-determination (a person should have their
own interests and tastes)
• Opportunity for training and learning, so that each person can
acquire knowledge and practice the skills needed to enjoy great-
er independence
• Support and assistance with defining and carrying out leisure
plans
• Diversity of opportunities to enjoy free time, share experiences
with others, learn, travel and make friends
• Easier access to leisure activities in the community
METHODOLOGY
Staff interventions always start with a request made by the person
with a disability.
An intake interview identifies the person’s support needs, degree of
independence, weekly breakdown of busy vs. free time, preferred choices,
and so on.
The person seeking support and the staff members combine the
original request and the information gathered during the interview to joint-
ly draw up a personal leisure plan and determine what type of support will
be needed for its implementation.
The person receives support throughout the process, from lodging
the request to implementing the personal leisure plan. This is crucial to
ensure quality of service.
‘CONNECT’Activity Service 35
PROGRAMMES
The Service offers a number of programmes to meet existing de-
mand.
Training courses aim for the person to discover and exercise the
skills needed for personal growth and for social development as an active,
independent member of the community,
whereas workshops provide opportunities to learn and share affini-
ties with others.
Some courses and workshops are regular, weekly activities;
whereas others are one-off, intensive events held at different times dur-
ing the year.
Tourism Programme
The Tourism Programme is driven by people who want a chance to
see new places, share experiences with others and enjoy the whole pro-
cess.
Support is provided for holiday travel organization, including
choosing the destination and means of transport, making room-sharing
arrangements, deciding on activities, and so forth.
‘Activities for Friends’ groups also receive this kind of support to
plan weekend outings.
38 Fundació Catalana Síndrome de Down
‘COLLABORATE’
INTEGRATED EMPLOYMENT SERVICE*
E
ntering the job market means fully entering the world of adults.
This is difficult for anyone, but even more so for young people
with special needs.
For people with intellectual disabilities (IDs), work is a human ac-
tivity undertaken to address personal, economic and social needs – the
same as for everyone else. Work also provides structure, keeps a person
active, helps them structure their time, helps them tell the difference be-
tween individual goals and objectives and collective ones, and provides
them with elements of identity.
For people with IDs, work also means a chance to come into contact
with a type of group they are not accustomed to: people of different sorts
who come together because of work and with whom they will establish re-
lationships and ways of communicating that are completely different from
what they were used to. This new type of relationship requires the worker
to think and act in collective terms, as a group member; in other words, it
entails a collaborative approach and a new role.
The workplace may well be the place where an individual with
learning difficulties first abandons a passive role as a service recipient
(‘Others teach me and care for me’) and takes on an agent role (‘I am
producing something’). Employment triggers a change in the individual’s
emotional outlook and improves self-esteem, leading to further changes in
attitude and behaviour which carry over to settings other than work.
Experience with integrated employment has shown that many peo-
ple with IDs can hold jobs in mainstream companies. However, success
OBJECTIVES
The ‘Collaborate’ Integrated Employment Service was set up in
1996 with funding from the Labour Department of the Government of
Catalonia in order to meet the needs of people with IDs in a mainstream
employment setting. Its ultimate goal is to provide access to regular em-
ployment for people with IDs. This is achieved in two key stages:
SERVICE AREAS
SERVICE CHART
INTRODUCTION
TO WORK
TRAINING
MODULE
INFORMATION, ASSESMENT AND GUIDANCE PROCESS
ON-SITE TRAINING
ADVICE AND GUIDANCE
WORKING ENVIROMENT
Designing the service user’s employment
profile
Finding employers
Designing the job profile
Definition of objectives
Follow-up of job placement:
In-company follow-up
Individual tutoring sessions
Working with the family
EMPLOYMENT CONTRACT
Private employers
JOB
PLACEMENT SOCIAL CARE
EMPLOYMENT
AGREEMENT
Government-sector
employer
42 Fundació Catalana Síndrome de Down
• Training modules
We schedule theory modules every year, with content and tim-
ing tailored to the needs and specificities of enrolled service
users.
• Hands-on training
We seek out and research supporting companies and monitor
practical training.
METHODOLOGY
The role of our service staff in the placement process is one of
mediation. The mediation method consists of encouraging the involve-
ment and cooperation of natural support persons in the workplace, in
other words, enlisting the support of co-workers, supervisors, and all
other employees who will interact with the service user and work in
close proximity. They are the ones who facilitate the new worker’s
inclusion.
In a mediation process, professionals focus on making the service
user’s characteristics compatible with the demands of the job: integration
is facilitated by encouraging those involved to exchange information and
views in order to work toward normalcy.
The moment a person with disability enters a normal work setting,
he or she acquires a new social role: the role of a worker. People with
disabilities who behave childishly and immaturely in settings that cre-
ate dependence and overprotection transform their behaviour as soon as
they are in a setting with role-based expectations. The role of the profes-
sionals working with people who have disabilities changes accordingly:
once the aim is for service users to take on social roles, the professionals
are no longer there to provide care, but to mediate in a process that will
give the service user the space necessary for adult life.
Unlike other methods, mediation thus affirms the importance of nat-
ural support: all pointers, warnings and advice are given to the candidate’s
fellow workers and direct supervisors, who provide on-the-job training
themselves rather than having coaches or trainers come in from outside
the company.
44 Fundació Catalana Síndrome de Down
T
raditionally, people with IDs had limited living options: they ei-
ther remained in their original family household or were placed
in institutions or group homes. This approach denied them the
right and the chance to choose their own lives, and made them continu-
ally dependent upon others. Our society thus enshrined overprotection,
which in turn justified segregation of individuals with IDs.
While residential institutions, including group homes, have gradu-
ally evolved into smaller structures and increasingly functional organiza-
tions, obtaining a residential placement still entails accepting a group liv-
ing situation and constant external supervision. The individual’s status is
that of a resident in an establishment allocated on the basis of availability
and care needs. Requiring the individual to adapt to a structure rather than
having the structure adapt to the individual can be a major obstacle for
independence and personal fulfilment.
In recent years, many people with IDs have had access to integrated
schooling, employment and social life, and enjoyed living conditions and
life expectations increasingly similar to those enjoyed by the general pop-
ulation. This generation of people with disabilities as well as their families
and advocates are now demanding opportunities for independent living,
to pave the way for emancipation. To make independent living possible
we need to develop new person-centred support approaches that take into
account the person’s wishes and expectations, to ensure fulfilment and
quality of life.
Article 19 of the UN Convention on the Rights of Persons with
Disabilities (adopted in 2006) recognizes the right to live independently
48 Fundació Catalana Síndrome de Down
in the community and demands that signatories provide all the services
and resources needed for people with disabilities to enjoy this opportunity.
With all this in mind, in 2000 the Foundation set up its ‘I’m Going
Home’ Independent Living Support Service in order to offer individuals
with disabilities the requisite support to make a home of their own and live
there, ensuring the highest possible degree of safety and wellbeing.
This was a ground-breaking programme in Catalonia, though it
took its inspiration from well-known schemes such as the Home of Your
Own Alliance, originally launched in the United States by the University
of New Hampshire’s Institute on Disability, or the Paradigm scheme in the
United Kingdom. There is now an international consensus on a series of
new paradigms, including the movement for independent living, the social
model of disability, the concept of self-determination, and others. These
approaches promote deinstitutionalization of people with disabilities and
the development of inclusive social policies that boost personal independ-
ence.
In 2002 the Government of Catalonia’s Department of Social Wel-
fare and the Family founded and regulated its Support Programme for
Independence Within a Person’s Own Home, and our service was consoli-
dated as a new social benefit within the welfare service portfolio. There
are 900 people with disabilities currently benefiting from this provision in
Catalonia.
The Service is intended for people with IDs. In keeping with the
new approach advocated by American Association on Intellectual and
Developmental Disabilities, it is specifically intended for adults (aged 18
years and over) ‘with significant limitations both in intellectual function-
ing and in adaptive behaviour as expressed through conceptual, social, and
practical adaptive skills’.
There are three indispensable requirements: the individual has to
be the one requesting the service to achieve emancipation; the application
must have the support of the individual’s family and/or legal representa-
‘I’M GOING HOME’INDEPENDENT LIVING SUPPORT SERVICE 49
METHODOLOGY
We look beyond the assessment criteria used to determine a person’s
functioning and how their disability influences the overall set of abilities
and skills displayed. 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 attitudes linked to the service user’s awareness
50 Fundació Catalana Síndrome de Down
E
ver since John Langdon Down first described the syndrome that
now bears his name, there has been remarkable interest in asso-
ciated medical issues. For over a century, much work has been
done on the medical side to gain a better understanding of health is-
sues in people with Down syndrome (DS). The chromosomal origin
of the syndrome – a third copy of chromosome 21 – was discovered in
the second half of the twentieth century, and molecular studies of indi-
vidual genes and DNA on chromosome 21 have been under way since
the 1990s.
DS is not an illness. However, people with DS do have a greater-
than-average tendency to suffer from certain health problems which may
be serious, especially if they are not diagnosed or treated at an early stage.
They have a higher rate of congenital malformations, especially of the
heart; and a greater likelihood of developing metabolic disorders and in-
fectious diseases later in life, among others.
OBJECTIVES
Our Foundation has always paid particular attention to medical
aspects of DS, since good physical health is an essential condition for a
proper educational intervention. The Down Medical Centre was created
in 1987 to address these health concerns. It was the first in Spain to pro-
vide medical care specifically for people with DS. It has changed con-
siderably over the years, expanding its range of services and increasing
the number of patients seen. Currently, it is one of the major healthcare
centres for people with DS worldwide because of its patient population
size and the specificity of its services, achieved thanks to the continued
presence of the same medical staff from its inception. Its mission is
threefold. First, health care based on prevention and surveillance to
54 Fundació Catalana Síndrome de Down
ensure that people with DS enjoy good health. Second, research, which
is facilitated through arrangements that make it a part of the public
healthcare system in Catalonia (SISCAT) and through agreements with
hospitals, universities and other institutions. Third, education, both for
healthcare professionals and for relatives and other people with an in-
terest in DS.
In 2010, the Down Medical Centre received the Reina Sofía Award
for Prevention of Disability in recognition of its work in health care and
medicine.
HEALTH CARE
The Down Medical Centre comprises 19 medical specialties and
treats over 2,500 patients*, most of them from Catalonia, totalling over
2,200* visits a year.
* 2014 figures
DOWN MEDICAL CENTRE 55
Cardiology Neuropsychology
Maxillofacial Surgery Dentistry (Paediatric and Adult)
Dermatology Ophthalmology (Paediatric and
Adult)
Dietetics and Nutrition
Orthodontics
Endocrinology
Otolaryngology
Genetics
Paediatrics
Geriatrics
Clinical Psychology
Gynaecology
Psychiatry
Internal Medicine
Orthopaedics and Trauma
Neurology (Paediatric and Adult)
a) Geneticist
• DS diagnosis. Chromosome study using karyotyping or flu-
orescence in situ hybridization (FISH) to determine wheth-
er the patient has regular, mosaic or translocation trisomy.
Family assessment and counselling if required.
b) Paediatrician
General examination of the newborn, with a special em-
phasis on:
• Screening for congenital cataracts or other eye defects.
• Ruling out potential congenital malformations, both exter-
nal and internal.
• Hearing examination.
• Thorough testing to rule out metabolic disorders, particu-
larly hypothyroidism.
c) Cardiologist
• Cardiac examination. Assessment of potential need for
medical treatment or surgery.
d) Paediatric neurologist
• Examination of muscle tone and neurological development.
• Co-ordinating action with early intervention services and
other professionals.
Other tests:
• Karyotyping/FISH.
• Metabolic screening.
• Cardiac tests (echocardiography, ECG, etc.).
• Blood tests: Complete blood count.
• Abdominal ultrasound.
• Hearing tests (otoacoustic emissions, brainstem auditory
evoked potentials).
58 Fundació Catalana Síndrome de Down
2. 3-11 Months
a) Paediatrician
The infant is examined with a particular focus on the fol-
lowing:
• Assessment of growth, general condition, and nutritional
status.
• Genitals: checking for undescended testes, etc.
• Immunization according to the adapted immunization
schedule.
• Monitoring of existing conditions.
• Skin moisture and elasticity.
b) Paediatric ophthalmologist
• Diagnosis and follow-up of eye disorders, if any.
c) Otolaryngologist
• General examination (size of ear canal, hearing, potential
acquired disorders).
d) Paediatric neurologist
• Assessment of psychomotor development.
3. 1–4 Years
a) Paediatrician
Annual assessment of the following items:
• Growth, weight, and head circumference according to DS-
specific growth charts.
• Health and hygiene habits.
• Immunization according to the adapted immunization
schedule.
DOWN MEDICAL CENTRE 59
b) Paediatric ophthalmologist
• Annual check-up to screen for errors of refraction (near-
sightedness, farsightedness, etc.).
c) Otolaryngologist
• Annual screening for potential disorders, using tests as re-
quired (e.g., brainstem evoked response audiometry or tym-
panometry).
d) Paediatric neurologist
• Assessment of psychomotor development and maturity.
e) Orthopaedist
• Monitoring of gait and stance.
• Screening for potential joint dislocations.
f) Dentist
• Teeth: routine preventive care.
Other tests:
• Assessment of psychomotor development.
• Blood panel, biochemistry, and thyroid tests, annual (un-
less there are specific disorders).
• General immune panel around the child’s 1st birthday.
• Serology for anti-HBs antibodies (at 1 year) and anti-rubel-
la IgG level (at 2 years).
• Cervical spine X-ray (3–4 years).
• Tissue transglutaminase IgA or deaminated gliadin peptide
IgA (18–24 months).
4. 5–10 Years
a) Paediatrician
Annual assessment of:
• Growth, weight, and head circumference. Nutrition status.
60 Fundació Catalana Síndrome de Down
b) Paediatric ophthalmologist
• Annual or biennial eye examination.
c) Otolaryngologist
• Annual or biennial ear examination, including associated
structures.
d) Paediatric neurologist
• Annual or biennial assessment of neuromotor development.
e) Neurophysiologist
• Assessment of potential sleep disorders.
f) Orthopaedist
• Examination of joints.
• Monitoring of gait.
g) Dentist
• Teeth: routine preventive care.
• Orthodontics, where necessary.
h) Psychologist
• Monitoring of development in relation to age.
Other tests:
• Blood panel, thyroid tests and biochemistry, annual.
• Tissue transglutaminase IgA or deaminated gliadin peptide
IgA (test if not tested earlier, and repeat test at age 6–7
years).
• Hearing tests.
• Polysomnography, if required.
DOWN MEDICAL CENTRE 61
5. 11–18 Years
a) Paediatrician
Annual assessment of:
• Health and hygiene habits.
• Routine adolescent checks.
• Immunization according to schedule.
• Height and weight.
b) Paediatric ophthalmologist
• Regular eye examinations.
c) Otolaryngologist
• Biennial hearing examination.
e) Orthopaedist
• Monitoring of atlanto-axial joint and gait.
f) Gynaecologist
• Assessment of sexual development and menarche.
g) Psychologist
• Regular checks through puberty and adolescence.
h) Neuropsychologist
• Neuropsychological assessment (at age 18).
Other tests:
• Cervical spine imaging where risk exists.
• Blood panel and thyroid panel, annual.
• Hearing tests.
62 Fundació Catalana Síndrome de Down
a) Internist
Annual check, focusing on:
• Weight (obesity).
• Health and hygiene habits.
• Thyroid function.
• Development and sleep disorders.
• Adult immunizations (Tdap, influenza, pneumococcal).
b) Psychologist
• Annual check.
DOWN MEDICAL CENTRE 63
c) Neurologist
• Regular assessment every 5 years up to age 40 years, and
every 3 years subsequently.
i) Individualized visits
• -Geriatrician (starting at age 40-50 years). Assessment of
ageing.
Other tests:
• Clinical, haematological and biochemical tests according to
needs and developments. Thyroid hormone panel, annual.
64 Fundació Catalana Síndrome de Down
• Dermatology
• Dietetics and Nutrition
• Endocrinology
• Gastroenterology
• Haematology
• Immunology and Allergology
• Orthodontics
• Psychiatry
O
nce our Foundation had addressed the need for care, diagnosis, and
treatment of physical conditions and had set up health promotion
and disease prevention programmes to ensure good health, the next
challenge for people with IDs was inclusion, both in schools and in work
and social settings. People with disabilities have gradually moved away
from segregated settings to sharing spaces and life experiences with the rest
of the population. As a result, we professionals who work with them have
shifted our focus to new emerging issues such as disability awareness, iden-
tity and sexuality, and to the diagnosis and treatment of mental disorders
that arise among people with IDs, as they do among the general population.
Disability has readily been used in the past as a catchall category
that could both encompass and explain any kind of problematic or disso-
cial behaviour. Disability has thus masked mental disorders, which have
therefore gone undiagnosed and untreated. Hence the importance of pre-
venting, diagnosing and treating the potential mental disorders of people
with IDs and providing advice in this regard.
Traditional educational approaches for people with IDs are not con-
ducive to mental health: individuals with IDs are not allowed to express
their wishes, are constantly told what to do and when and how to do it,
are denied freedom of choice (even for choice of clothing, all too often),
and are overprotected. Besides, the transition to adulthood is frequently
abrupt, and an overprotective education often fails to provide the resources
needed to take on the responsibilities and situations of daily living. Mean-
while, parents are still struggling to view their children as adults, and fail
to prepare them for the responsible roles required later in life, at work, at
school and in leisure activities.
Thus, the need for psychological support does not necessarily arise
because of any mental disorder. People with IDs and their families have
a real need for psychological support in any case: raising a child with an
ID is a complex undertaking, and finding one’s place in society is no easy
task for a person with a disability. The need for support and advice may
fluctuate over time, but starting early with a well-founded approach is well
worth considering, so the therapist can get to know the patient and work
toward a favourable course.
Language development also needs close monitoring and often gives
rise to concerns and requests for advice. Language has to do with com-
munication and with relationships: in other words, with a person’s social
and emotional being. Speech and language difficulties cause a lot of worry
among the families of persons with Down syndrome (DS). However, the
language development process is similar to that experienced by children
without disabilities, although it is slower and language acquisition re-
mains incomplete. Babbling and early words are the same as for other
children, but emerge at a later age, both as a result of speech impediments
and because of shortcomings involving concept formation, abstraction,
and relational factors.
The speech and language disorders of people with IDs require an
accurate diagnosis. Psychological or psychiatric disorders can have an im-
pact on language: thus, the underlying problem has to be correctly identi-
fied to provide the right treatment. Speech and language therapists need to
assess whether and when to begin treatment, and must determine whether
the person has the necessary resources and skills: the point is not just for
them to learn to pronounce a word correctly, if that is the issue, but to help
them use language and discover what it is used for.
Physical therapy is also offered in order to prevent, treat and evalu-
ate developmental delays as well as any problems caused by physical is-
sues as they arise.
THERAPEUTIC CARE SERVICE* 67
Our Foundation provides care for people with all kinds of IDs as
well as for their families; however, the Down Medical Centre only serves
people with DS. People with other IDs who could not receive care at the
Down Medical Centre would come to us for help addressing their prob-
lems or concerns, so the Therapeutic Care Service was set up in 2005
to provide therapy for the mental health, language, and motor issues of
persons with any kind of ID. We also provide care for their families (in
the form of psychotherapy for parents and siblings), and care for people
without disabilities who are already recipients of the Foundation’s ser-
vices (specifically, for children who are too old to continue treatment at
our Centre for Child Development and Early Intervention).
FUNCTIONS
1. One-off enquiries: We deal with enquiries to address concerns
over behavioural issues, language issues or specific situations, as well as
enquiries related to a person’s developmental stage and its outward signs
(including sexuality, change of school, and so forth.).
2. Diagnostic assessment: We speak of a dual diagnosis when a
person has both mental retardation and a psychological or psychiatric dis-
order. Arriving at a dual diagnosis can be a complex task because of the
difficulty involved in telling what is truly pathological apart from what is
not. Also, clinical signs and symptoms may be different from those found
in the general population. Diagnostic assessment at the Therapeutic Care
Service also includes second opinions (typically for children with DS re-
ceiving care at an early intervention service but whose families want a
second opinion from DS experts).
3. Therapies: Therapeutic objectives are pursued through the fol-
lowing approaches:
3.1. Psychotherapy: Like other types of care, psychotherapy
was traditionally provided only for people without disabilities.
Only they could receive re-education, stimulation, and other
68 Fundació Catalana Síndrome de Down
• neuromuscular disorders
• musculoskeletal disorders
• cardiovascular and respiratory disorders
SERVICE STRUCTURE
Our Therapeutic Care Service staff is a multidisciplinary team
comprising experts in psychology, speech and language therapy, physical
therapy, specialized education, psychiatry, and paediatric neurology (for
second opinions).
INTERVENTION AREAS
Physical therapy:
70 Fundació Catalana Síndrome de Down
METHODOLOGY
Once a diagnosis has been obtained, therapy may be provided indi-
vidually or in a group setting, according to the Service team’s judgement.
Whole-team clinical sessions may be required to decide on the best course
of action.
Individual psychotherapy may be short-term, focal, or long-term.
Speech and language therapy is also offered both individually and in
groups. Physical therapy is only provided individually.
Therapy groups
Group therapy is organized in order to do creative work bearing
in mind the therapeutic goal, namely, individual improvement. However,
a group can also be set up for a particular aim or purpose of its own. In
that case, the feeling among group members is one of doing something
together with other people. Engaging in group efforts has constructive and
therapeutic effects.
Our groups meet weekly and are led by one or two therapists. There
are different modes:
Encounter groups
T
he Family Support Service is for parents and siblings of peo-
ple with intellectual disabilities. Its overall aim is to foster their
wellbeing and quality of life through counselling, information
on resources – both in-house and external – and supporting programmes
and activities.
Families are a central and important focus of our work and our mis-
sion, so we work hard to enhance their wellbeing and quality of life.
• We think of the family as a social support system. Every family
is different and unique.
• We recognize the importance of family life for individual de-
velopment.
• We believe that parents know their children best and want the
best for them.
We view our work as a relationship in which we co-operate with
families and respect them, recognizing the experience they bring to the
table, and we strive for involvement in service and activity planning.
We offer families the following:
• Information about available resources in order to make the best
use of existing programmes, services and forms of support.
• Counselling, guidance and support during decision making, as
well as in the process of contacting and recruiting resources of
their own and resources available to them.
• Coordination of internal and external services, putting families
in touch with the resources most likely to be of use.
74 Fundació Catalana Síndrome de Down
OTHER ACTIVITIES:
The Family Support Service also organizes activities for service us-
ers and their families in conjunction with the Foundation’s other services
and staff members: shared fun activities encourage personal and family
FAMILY SUPPORT SERVICE 75
LEGAL ADVICE:
O
ne of the aims of our Foundation is to serve as a reference
centre for professional workers, parents and family members.
Therefore, in its capacity as a resource centre, the Foundation
has a Teaching and Training Committee consisting of our in-house pro-
fessional staff members as well as including external consultants who
specialize in whatever topic is at hand, to ensure that all activities or-
ganized for families, professional workers and interested members of
the public are carried out to the highest standards.
3. PRACTICUM TRAINING
RESEARCH
C
linical research on Down syndrome (DS) is one of the missions
of Fundació Catalana Síndrome de Down (‘the Foundation’).
The Down Medical Centre (Centre Mèdic Down – CMD) has
been involved in many research projects, both directly and indirectly.
Having obtained research funding from the 1993 La Marató de TV3 tel-
ethon drive organized by Catalan public television station TV3, aimed
at securing a better understanding of chromosome 21 dysfunction, and
preventing and alleviating the effects produced by the excess chromo-
somal material, the Foundation was able to compile the first specific
health database on DS. The database has been added to over the years
by including all patient histories for all 19 medical specialties covered
by the CMD. It currently contains medical history data from over 2.500
persons with DS.*
This database is an essential instrument that has enabled us to deter-
mine normal reference values for people with DS, including the creation
of Catalonia’s first DS-specific growth charts, of great value to paediatri-
cians. The charts plot weight, height or length, and head circumference
reference values from birth to age 17 years; one set of charts is for ages
0–3 years and another for ages 3–17 years. Charts are available upon re-
quest from the Foundation or from the Spanish Down Syndrome Federa-
tion (DOWN España). They are freely available online for all physicians in
Catalonia.** The growth charts are currently being updated with the latest
data. They are also being used to expand our understanding of related
medical conditions, so that certain health issues can be identified early
and prevented.
*Figures 2014
**http://www.fcsd.org/taules-de-creixement-espec%C3%ADfiques-per-a-infants-amb-la-
sd_21453
82 Fundació Catalana Síndrome de Down
The rest of the funding raised by the La Marató de TV3 telethon was
used to launch a number of biomedical and psycho-educational research
projects, followed over the years by many others. Annex 2 lists them all.*
Since the telethon, we have undertaken research collaborations with
public hospitals in Catalonia such as Hospital de la Santa Creu i Sant
Pau and Hospital del Mar, as well as Catalan universities including the
University of Barcelona, Autonomous University of Barcelona, Technical
University of Catalonia, and University of Girona.
In 2011, the Foundation analysed what the future path of research
should be. As a result, our research objectives for the next few years will
focus chiefly on ageing-related diseases, particularly Alzheimer disease.
Currently, over 50% of adults with DS are expected to develop Alzheimer
disease starting at the age of 40 years. In 2012, a specific Down Syndrome
and Alzheimer Disease unit was set up within the CMD, and a health plan
was implemented to screen for Alzheimer disease. In 2013 we reached an
agreement with the Memory Unit at the Hospital de la Santa Creu i de Sant
Pau for purposes of diagnosis and treatment as well as to carry out investi-
gations to supplement the health plan. The studies were recognized with a
research grant from Spain’s Fondo de Investigación Sanitaria (Healthcare
Research Fund) in 2013 and another in 2014, as well as a further grant
from La Marató de TV3.
The Foundation also confers the Ramon Trias Fargas Prize every
two years for scientific research or experimental work concerning genetic,
perinatological, psychological or other medical aspects relating to DS.
Any research projects conducted in Spain may apply for the prize. The
jury is a scientific committee of specialists. Candidates may be individuals
or teams, and must have the support of a scientific or academic institution,
or of any institution related to DS.
* Annex 2 is available online at www.fcsd.org and upon request from the Foundation.
83
DEPARTMENT OF
COMMUNICATION
T
he Department of Communication and External Relations organ-
izes and structures awareness campaigns, spreads the word about
the Foundation’s activities and mission, facilitates cooperation
with other institutions, makes its resources available to families and
professionals, periodically evaluates the need for new projects, seeks
out support for and commitments to our cause, and raises funds to fi-
nance the Foundation’s projects.
The Department of Communication and External Relations handles
the following activities:
T
he Begoña Raventós Data Centre was founded in 1985 when Dr
Jesús Raventós donated the book collection belonging to the Be-
goña Raventós Information Service to our Foundation.
The Data Centre has a specialist focus on disability of any type,
whether intellectual, physical, or sensory, and addressed from any per-
spective, including medical, psychological, educational and social disci-
plines.
Its chief mission is to act as a repository for documents to meet the
information needs of professionals, teachers, parents and students with
an interest in disabilities. The aim of the Document Centre is therefore
to collect, process and disseminate all types of documents published on
Down syndrome (DS) or other disabilities, in order to ensure people with
disabilities and their parents can get access to information, as is their right,
and in order to promote the research, education, training and other work
carried out by everyone involved in the relevant areas of knowledge. The
Data Centre also acts as a repository and distribution centre for official
publications and other materials produced by the Foundation.
OBJECTIVES
• To provide specialized material supporting research and the
daily work of professionals, parents, and students in the area of
disabilities.
• To contribute to the basic training and continuing education of
students and professionals.
• To support the Foundation’s activities, courses, lectures, semi-
nars and symposia.
88 Fundació Catalana Síndrome de Down
COLLECTION
The original collection has been expanded over the years and now
comprises 4 distinct sections: the library, the periodicals section, the me-
dia section, and the archive.
LIBRARY
With over 5700 books, the library is Spain’s largest specialized re-
pository of books on DS.
Major books on topics relating to DS and/or other intellectual
disabilities, whether published in Spain or abroad, are made available
to professionals, researchers, clients and family members. In addition,
there is a collection of more than 4000 non-marketed specialized book-
lets and pamphlets, including conference abstracts, offprints, and so
forth. Lastly, the library also holds an extensive collection comprising
twenty years’ worth of banners, posters, and conference or seminar pro-
grammes.
Readers can browse these materials in the reading room by appoint-
ment.
PERIODICALS SECTION
The periodicals section comprises over 250 journals and newslet-
ters, including about 100 current subscriptions. Journals are screened
monthly for relevant articles. There are over 5800 catalogued articles
at present. The Data Centre has shared access to catalogues and da-
tabases of other organizations, so the articles that are not physically
available on-site can also be located and obtained. The catalogue is
shared with other document centres and libraries using virtual plat-
forms C17 (http://www.c17.net/) and CCUC (http://ccuc.cbuc.cat/) to
ensure that available resources can be accessed by the whole scientific
community.
BEGOÑA RAVENTÓS DATA CENTRE 89
ARCHIVE
The main purpose of the archive is to conserve all articles appeared
in the press related to intellectual dishability from the year 1960.
For some years now, because of evolving technology, the archive
has been collecting press clippings in electronic formats as well as paper.
This section provides some perspective on how the media have treated dis-
ability over the years and how the general population has taken on board
evolving approaches.
The archive also stores all materials published by the Foundation’s
Department of Communication and External Relations.
MEDIA SECTION
The surge of new developments in information technology has
brought about a revolution in the library world. The increased number of
media types has changed both our conservation approach and the way dif-
ferent types of materials can be browsed. As a result, the former videotape
section has been expanded with non-tape media and online resources, and
renamed the media section. The section holds over 330 audiovisual works
on all kinds of media, including videotapes, audio cassettes, CD-ROMs,
DVDs and eBooks; with all kinds of content, such as films, debates, docu-
mentaries, public information videos or work sessions; and involving all
types of disabilities (physical, intellectual and sensory). These are an ex-
cellent way for people to get to know about the Foundation’s activities and
a great opportunity for first-time contact with people with disabilities, to
experience the way they speak and how they behave. They also provide
access to experiences in education and employment implemented by other
organizations and other professionals. The contents of the media section
constitute ideal support material for courses or seminars as well as for
the Foundation’s own awareness-raising campaigns. For ease of viewing,
many of these materials are available via the Foundation’s website (www.
fcsd.org).
90 Fundació Catalana Síndrome de Down
PUBLIC INFORMATION
Automation of the catalogue in 2001 meant more access points and
speedier searches for users outside the Foundation. The catalogue can be
accessed via the Collective Catalogue of Catalan Universities (CCUC)
<www.cbuc.es/ccuc> and the Spanish Health Libraries Periodicals Cata-
logue <www.c17.net>.
Online catalogue browsing provides access to the Data Centre’s
holdings and the Document Provision Service anywhere, at any time.
USERS
Anyone with an interest in disability can become a Begoña
Raventós Data Centre user. The main group catered for is the Foun-
dation’s own staff. Other target groups include students preparing to
become schoolteachers, nurses, psychologists, education specialists,
speech and language therapists, physical therapists or social workers,
as well as qualified professionals who work as staff members of psy-
cho-educational advice and guidance teams for school districts, school
psychologists, and so forth. These users may need to prepare continu-
ing education sessions, check the law on a given topic, or research any
other issue in relation to any aspect of disability, including school, work,
psychology, medicine, legal issues, personal development, leisure, care
provision, and welfare services.
SERVICES
The Document Centre provides the following services:
• Open browsing in the reading room and viewing of available
audiovisual materials, as well as Internet access.
• Document supply service, for users to obtain any documents
they need. Any journal article or book chapter in our holdings
BEGOÑA RAVENTÓS DATA CENTRE 91
AWARDS
ACKNOWLEDGEMENTS
F
undació Catalana Síndrome de Down thanks all the institutions
that support its work, whether public or private, as well as all do-
nor members, partner organizations, businesses, and private in-
dividuals. Without their support and financial aid, we could never serve
our purpose and carry out our projects to improve quality of life for
people with disabilities and enable them to attain full social integration
at all levels: school, employment, society and advocacy.
We wish to thank the families and the individuals we serve, who
share their needs with us and guide change in the Foundation.
Every idea, every new initiative, every extension of a service or
offering needs funding before it can happen. The Foundation could not
function without your support.
Thank you very much.
97
RECOMMENDED READING
LEGEND:
(√) – Recommended for parents
(*) – Published by Fundació Catalana Síndrome de Down
GENERAL TOPICS
AAMR. Retraso mental. Definición, clasificación y sistemas de apoyo. Madrid:
Alianza; 2004.
Borbonés R, Golanó M. ‘The group: an instrument of intervention for the global
development of the child with Down Syndrome in the process of social inclusion’, Down
Syndrome Research and Practice. 1998; 5: 88-92.
(*) Brechin A, Swain J. Changing relationships. London: Harper & Row; 1987.
Cichetti D, Beefhly M. Children with Down Syndrome. A development perspective.
Cambridge, UK: Cambridge University Press; 1990.
(√) - (*) Cunningham C. Down Syndrome: An Introduction for Parents. London:
Souvenir Press; 1990.
DSM-5. Manual diagnóstico y estadístico de los trastornos mentales. [5th ed.]. Ma-
drid: Editorial Médica Panamericana; 2014. Translated from English.
(*) Garvía B. ‘Depression and Down Syndrome’. SD-DS. International Medical
Review on Down’s Syndrome. 2010;14: 14-6.
(*) Garvía B. ‘Mourning and Disability’. SD-DS. International Medical Review on
Down’s Syndrome. 2009; 13: 13-6.
(*) Garvía B. ‘Mental Health and Down Syndrome’. SD International Medical Re
view on Down’s Syndrome.. 2000; 4:44-6.
(*) Garvía B. ‘Down Syndrome and Identity’. SD-DS. International Medical Review
on Down’s Syndrome. 2005; 9: 12-5.
(√) Jollien A. El filósofo desnudo. Barcelona: Octaedro; 2012.
(√) Jollien A. El oficio de ser hombre. Barcelona: RBA; 2003.
(√) Jollien A. Elogio de la debilidad. Barcelona: RBA; 2001.
(√) Kumin L. Early Communication Skills for Children with Down Syndrome: A
Guide for Parents and Professionals. 3rd edition. Bethesda MD: Woodbine House; 2012.
98 Fundació Catalana Síndrome de Down
(*) ‘Síndrome de Down: proceso hacia la vida adulta’. Recopilación de las ponen
cias de las VI Jornadas Internacionales sobre el síndrome de Down. Barcelona: Funda-
ció Catalana Síndrome de Down; 1998.
(*) ‘Síndrome de Down: el adolescente y el joven con síndrome de Down: avances
médicos y psicopedagógicos’. Resumen de las ponencias de las III Jornadas Internaciona
les sobre el síndrome de Down. Barcelona: Fundació Catalana Síndrome de Down; 1991.
(√) Solomon A. Far From the Tree: Parents, Children and the Search for Identity.
New York: Simon & Schuster; 2012.
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EARLY INTERVENTION
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SCHOOLING
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ETHICS
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INTEGRATED EMPLOYMENT
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LANGUAGE
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SEXUALITY
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GROUP THERAPY
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INDEPENDENT LIVING
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AGEING
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FAMILY SUPPORT
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114 Fundació Catalana Síndrome de Down
SOCIAL WORK
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LIFE STORIES
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