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Fundació Catalana
Síndrome de Down 21




Title: Fundació Catalana Síndrome de Down. Services and Methodology.
Content Manager: Katy Trias Trueta
Originally compiled by: Beatriz Garvía Peñuelas
Translated by: Mary Fons i Fleming

©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

1st edition: 1999

2nd edition (revised and expanded): 2004
3rd edition (revised and expanded): 2007
4th edition (revised and expanded): 2009
5th edition (revised and expanded): 2015
Cover design and layout: freiredisseny.com
Printed by: Service Point F.M.I., S.A., Pau Casals, 161-163 - 08820 El Prat de Llobregat
ISBN: 978-84-938517-7-4
Copyright registration:

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.
Comte Borrell, 201, entlo. 08029 Barcelona
Director General: Katy Trias Trueta
Chair of the Board of Trustees: Montserrat Trueta


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


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
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



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-
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

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


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
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’.

• We strive to find new models for care provision in psychology,

education, job mediation and integrated employment, support
for independent living, and care for ageing persons with IDs,
among others.
• We are committed to innovation, development and quality of
• We aim to share the results of our research and our identified
good practices with society at large, through awareness raising,
public information and training.
• We are socially committed to effective, efficient and fair man-
agement of both public and private resources to which we have
access. Transparency and accountability are essential in order
for society to mantain its trust in us on a daily basis.
• In order to fulfil these principles, we choose to work within a
multiskilled team serving a common project and committed to
the Foundation’s mission, principles and values. We believe in
the lifelong development of all our staff team members, to be
achieved through participation and training, and we also believe
in an organizational model founded on individual responsibility
and communication, which uses systems for information, evalu-
ation and monitoring, and is geared to user satisfaction.

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

to encourage young people to have an integrating, knowledge-

based perspective on DS.
C) To carry out other activities related to the two above objectives
in order to meet the social, personal and family needs of people
with disabilities.
Since 1982 when the Spanish parliament aproved the LISMI (Ley
de Integración Social del Minusválido - a law for the social integration
of people with disabilities), children with disabilities have had access to
mainstream schools. This has proved highly beneficial not only for spe-
cial-needs children, but for the rest of society as well: people develop their
sense of solidarity, learn about disability, and as a result approach their
fellow beings in a natural, prejudice-free way that is conducive to true
integration. Our Foundation constantly strives to safeguard the rights of
people with disabilities, both by pressing for the enforcement of existing
legislation and by lobbying for new or improved laws to uphold and pro-
mote the full social integration of people with disabilities.

The Foundation is a member of:

ACTAS, Associació Catalana de Treball amb Suport

AESE, Asociación Española de Empleo con Apoyo

Asociación Española de Fundaciones

Coordinadora Catalana de Fundacions

DINCAT, Discapacitat Intel·lectual de Catalunya

DOWN ESPAÑA, Federación Española de Síndrome de Down

DSMIG, Down Syndrome Medical Interest Group

EDSA, European Down Syndrome Association, co-founded in Liège, Bel-

gium, in November 1987

FEAPS, Confederación Española de Organizaciones en favor de las Per­

sonas con Discapacidad Intelectual

Inclusion International

T21RS, the Trisomy 21 Research Society

UCCAP, Unió Catalana de Centres de Desenvolupament Infantil i Aten­

ció Precoç
16 Fundació Catalana Síndrome de Down


Honorary Trustees::

Victòria dels Àngels (RIP)

Ma del Mar Raventós
Josep M. Espinàs
Ramon Trias Fargas (RIP)
Francisco Domínguez del Brío
Robert Vergés (RIP)
Federico Mayor Zaragoza


Chair: Montserrat Trueta

Deputy Chair: Antoni Trias
Secretary: Inmaculada Bosch
Treasurer: Carmen Buxeres
Member: HRH Princess Alexia
Member: Joan Roca
Member: Joan Rodés
Member: Mònica Terribas
Member: Katy Trias


Quality External
System Advisory Board

Committee GENERAL



Family Support



Paediatric Adult Care

FUND RAISING Publications ÈXIT21
Medical Medical
Coordinator Coordinator

19 specialties

School Support Service

‘Connect’ Activity Service

Collaborate’ Integrated
Employement Service

‘I’m Going Home’ Independent

Living Support Service

Therapeutic Care Service



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

age onward, Paradoxically, however, DS births occur far more frequent-

ly among women under 35, first, because younger mothers are the main
child-bearing age bracket, and second, because older pregnant women are
routinely offered prenatal screening.
A number of methods can be used to diagnose DS prenatally. Amni­
ocentesis, involving the extraction of amniotic fluid through the abdominal
wall between the 15th and the 18th week of pregnancy, and chorion villus
sampling (often abbreviated as CVS), in which a small piece of placental
tissue is extracted, are diagnostic tests that identify DS and other chromo-
some abnormalities. Other methods that determine the risk of giving birth
to a child with DS have been recently incorporated in medical practice.
Biochemical screening, also known as first-trimester screening, is carried
out between the 8th and 12th weeks of pregnancy and measures the risk
that the foetus may have DS by combining maternal age with the results
of maternal blood tests, which look for altered levels of certain chemicals,
and of ultrasound screening, which looks for nuchal fold translucency.

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.




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-

* Acronym matches the name of the centre in Catalan.

24 Fundació Catalana Síndrome de Down

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.

When a family with a newly diagnosed child arrives at the CDIAP,

one of our main objectives is to support the child’s parents. Faced with the
news that the baby has a disability or any other disorder that may
hamper personal development, parents are struck to the core, not only by
the diagnosis itself but also by a host of strong feelings towards the baby
and towards themselves. The fantasies of pregnancy are shattered, the an-
tenatal bond is broken, and mourning begins for the loss of the hoped-for
child. This mourning process takes a long time, but it is needed so that the
parents can make room within themselves for the real baby, and want to
become that baby’s parents. Eventually, mourning leads to a gradual ac-
ceptance of the facts. Parents at this stage are emotionally very vulnerable
and thus highly insecure about their parental role. All this points to the
importance of providing care for both the baby and its parents.
The CDIAP is staffed by professionals with a variety of back-
grounds (psychology, physical therapy, speech and language therapy, so-
cial work, and neuropediatrics) who have specific and continuing training
in childhood development. We focus on the parents, the family as a whole,
and the child’s overall natural setting.
The CDIAP serves the following FUNCTIONS:


When parents come to us for help, we begin the intake process,

assess the child, and reach a diagnosis. Assessment is chiefly intended to
arrive at a functional diagnosis of the child’s problems and, wherever pos-
sible, to determine the aetiology of the child’s condition, if still unknown.
The aim is to establish whether the child has any developmental
impairment, to identify the emotional and relational components of the
child’s personality and to gauge the child’s adjustment to the demands
26 Fundació Catalana Síndrome de Down

of growth. Intervention will be decided and planned on the basis of this



Each child is treated by whatever professional is appropriate ac-

cording to the nature of the child’s problems. Intervention planning must
factor in the child’s overall needs and developmental stage in every sphere,
not just the sphere of impairment or disability. The whole person is con-
sidered, taking into account each individual child’s intrapersonal biologi-
cal, psychosocial and educational factors, as well as interpersonal factors
linked to the child’s circles, family, school, culture, and social context.
The interdisciplinary team includes psychologists, education specialists,
speech and language therapists, physiotherapists, a neurologist and a so-
cial worker, so that treatment can be provided in an optimally relevant way
rather than according to a preset pattern.
The CDIAP operates as an outpatient clinic providing individual
care; frequency of visits depends on each child’s needs.
The main purpose of intervention is to promote the best develop-
ment possible for each child taking into account their cognitive, emo-
tional and relational abilities, as well as their family and circles. Caring
for the family from the time the parents seek help and monitoring family
dynamics throughout the care process are key components of our inter-
Similarly, we consider a child’s adjustment to school a fundamental
step in social and personal development, so we hold coordination meet-
ings with education specialists to identify the child’s needs in a social
setting and assess how the child interacts with peers and adults. This is
achieved by observing the child in real-life school situations and inter-
viewing the child’s teacher.

We offer the following types of 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



The current biopsychosocial model underlying early intervention

requires us to link up with programmes and services that play a role in
the child’s environment and the family’s environment. Coordination meet-
ings are held with infancy and early childhood teams operating in schools,
health care centres and welfare services, to alert them to the need for swift
recognition of any sign of a developmental disorder. In this way we ensure
early detection and prevention for children under 6 years of age with de-
velopmental disorders or at risk of developing them.
Our aim is to facilitate early diagnosis of developmental disorders
and offer specialist care to those who need it in order to avert serious
consequences later in life. Coordination with other services is crucial:
by networking, we enable the family to receive consistent care through-
out the child’s development and thus ensure a whole-person approach
to care.
28 Fundació Catalana Síndrome de Down


By training professionals through symposia, courses and seminars and

by promoting research, we spread awareness of the characteristic traits of
different disabilities and developmental disorders as well as their impact on
family dynamics, and we build an understanding of how to choose the most
effective forms of intervention. To ensure maximum effectiveness, members
of multidisciplinary staff teams require high-quality specialist training.
Supervising the work of professionals (with the children and with
their parents) is an essential priority for us, to safeguard quality standards
in our daily work. In addition, our weekly team meetings regularly include
clinical sessions in which we analyse and debate our working methods on
the basis of case discussions.

Our service has obtained ISO 9001:2008 quality certification, which

it renews on a yearly basis.


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


The School Support Service provides direct support to schoolchildren

according to their individual needs by developing individual capabilities.
Support is provided both at the Foundation’s headquarters and
through on-site school visits in order to team up with the child’s teachers.
The child’s school life is tracked, and family interviews are conducted
• Playing, Experimenting and Learning: this activity for
preschoolers fosters active experimenting to develop each
child’s potential, provide communication strategies in order
to build social skills and independence, and reinforce func-
tional learning.
30 Fundació Catalana Síndrome de Down

• Playing and Learning Together: this activity for preschoolers

and children in the first two years of primary education aims to
develop communication and language skills; to foster creativ-
ity and stimulate the imagination through symbolic play; and
to boost certain kinds of functional learning that enhance inde-
• Speech Therapy: this activity for all age groups consists of in-
dividual, pair or group sessions, with timing adjusted to indi-
vidual needs.
• Relationships and Communication: this activity for school-
children in their third to sixth year of primary school aims to
encourage each child’s awareness and acceptance of their per-
sonal situation as well to enhance communication and relation-
ship skills through group therapy.
• Identity Groups: this group activity for secondary school chil-
dren focuses on building their self-identity and self-knowledge
as well as fostering personal independence.
School Support Service 31

• Study Techniques: this type of support is provided in a small-

group setting but individually tailored.
• School Support: our staff professionals work with the child’s
school, advising on individual objectives to be set, choice of
teaching methods, ways of addressing specific behaviours, and
so forth.
• Advice, Counselling and In-School Intervention: this type
of assistance is provided to all children and young people who
come to the Foundation’s headquarters and, at the parents’ re-
quest, to those who are unable to make their way to the Founda-
tion for whatever reason.

The Foundation organizes activities for the education community at

large to raise awareness and address training needs.
• Talks for teaching staff in schools
• Advice on request for any agent in the education community
• Awareness raising for schoolmates of children with Down syn-
drome, through activities such as storytelling or classroom pres-
• Training for professionals in the sphere of education: Open
Classroom and individual lectures

The School Support Service works with the Foundation’s Family

Support Service to provide the following:
• Intake and counselling for families addressing the School Sup-
port Service for the first time
• Regular meetings of the staff professional in charge of an indi-
vidual child and the child’s family
32 Fundació Catalana Síndrome de Down

• Parent groups
• Sibling groups


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

• 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
• Diversity of opportunities to enjoy free time, share experiences
with others, learn, travel and make friends
• Easier access to leisure activities in the community

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

All actions proposed are person-centred and flexible in method:

each person’s individuality, personal interests and traits are the core focus
when setting and pursuing objectives.
We take great care, from beginning to end, to ensure that all par-
ticipating persons can enjoy inclusive, community-based leisure with the
requisite support through the involvement of volunteers who spend time
with them, share their interests and take part in the same activities.

The Service offers a number of programmes to meet existing de-

Courses and Workshops Programme

Courses and workshops afford opportunities for free-time learning
and recreation.
36 Fundació Catalana Síndrome de Down

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.

Community-Based Activities Programme

The aim of the community-based activities programme is to encour-
age and support the participation of people with intellectual disabilities
on an equal footing with fellow citizens in mainstream social and cultural
activities offered in the community.
Intervention in such cases involves mediating between the person
with a disability and the mainstream community setting in which the ac-
tivity is organized.
Advice, follow-up and support are provided to the person at every
step of the way, from seeking and finding the chosen activity to bringing
it to an end. The staff of the mainstream amenities involved also receive
guidance and information to enable them to welcome and include the per-
son with a disability.

‘Use Your Mornings’ Programme

‘Use Your Mornings’ provides daily support for persons who are
at home and inactive for a variety of reasons. The main aim of this pro-
gramme is to maintain and enrich the person’s cognitive and functional
skills through learning, culture, art and recreation offered in a flexible and
stimulating setting.
‘CONNECT’Activity Service 37

Activities are grouped as follows:

• Art (drawing and painting)
• Stretching and Moving
• Social and Cultural Activities
• Cognitive Stimulation
• Personal Independence
• Fun and Recreation

‘Activities for Friends’ Programme

The aim of this programme is to provide a setting for people to
get to know each other, share hobbies and interests, and build friend-
Each group chooses and organizes its own activities, which take
place on the weekend.

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-
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


Our staff provide guidance, advice, and cooperation to mainstream
institutions, professionals, and community facilities, emphasizing the im-
portance of including persons with IDs in the community.
Family members also receive information and support regarding so-
cial participation of persons with Down syndrome: we encourage joining
mainstream activities offered in the person’s own natural setting.
The Service works in close cooperation with the Foundation’s other
support services for adults. It is staffed by specialists, and relies on sup-
porting of volunteers and students of social professions on practicum.


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

*Formerly known in English as the ‘Collaborate’ Job Integration Service

40 Fundació Catalana Síndrome de Down

hinges on a number of points: prior training and education, individual

skills and abilities, learning capacity, personal habits, the ability to adapt
to a new environment, and above all the ability to take on responsibilities.
The inclusion of a person with an ID in the world of employment is a
slow process that requires ongoing support and follow-up throughout the
person’s working life.

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:

• First, training takes place in an actual productive environ-

ment, allowing candidates to experience technologies and
work organization systems that would be very hard to re-
produce or too expensive to implement in a school or a job-
training centre.
• Second, candidates sign employment contracts. This in turn
shows employers and society at large that people with dis-
abilities are a real work force to bear in mind.


• Selection and assessment

Each service user’s pathway is individually tailored to their
baseline situation and to needs as they arise. After interview-
ing the applicant and the applicant’s family, our staff determine
whether training is necessary and identify the best training path-
way for employment.





Designing the service user’s employment
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

Private employers
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

• Hands-on training
We seek out and research supporting companies and monitor
practical training.

• Job pool and hiring process

We offer this type of support to service users who are in a posi-
tion to enter into an employment contract.

The Service has a Social and Occupational Programme specifi-

cally for people originally evaluated by welfare services as suitable for
sheltered occupational therapy. An agreement signed between Fundació

Catalana Síndrome de Down and the Government of Catalonia in 2000

allows these individuals to carry out tasks for five hours a day under an
occupational placement arrangement at companies owned by the Govern-
ment of Catalonia, for an unlimited period of time

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
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

A mediator will basically tackle the service user’s immediate work

setting, analysing:

• Technical working conditions that may have a significant

bearing on the worker’s performance.
• Personal relationships between the new worker and fellow
workers. The mediator may take preventive action to fore-
stall potential problems or help solve existing ones by ad-
vising the worker with ID and co-workers on the best way
to approach them.

The mediator takes an objective, logical stance which places posi-

tive solutions within reach, thus establishing a pattern of cooperation so
that the example set by fellow workers becomes valid training for the
worker with a disability.

Over time, we have observed highly positive change in many of our

service users, particularly in terms of independence and personal initiative
regarding the technical side of their job. This reduces their dependence on
fellow workers. Socially adaptive responses and behaviour likewise im-
prove, rewarding the worker with better acceptance and providing greater
self-esteem and personal fulfilment.

Our service has obtained ISO 9001:2008 quality certification, which

it renews on a yearly basis.



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-
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
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-

tives; and the person needs to be in a position to act as a householder and

maintain the dwelling, whether it’s owned or rented, subsidized or not.
The whole process of assessing support requirements and imple-
menting support is individually designed within a person-centred plan-
ning approach, which provides strategies to make sure the person’s own
wishes are a priority while a consensus is sought among the family, point
persons, friends, and so on., who constitute a Circle of Trust to provide
support. Support for independent living provides an opportunity for peo-
ple to exert control over their own lives, but this exercise requires ‘posi-
tive interdependence’ with the person’s social circles to ensure that their
wishes, actual possibilities and real limitations are all acknowledged and
taken into account.
We measure how well our service users’ expectations are met, and
thus to what extent the Service’s own goals are being achieved, using
Robert Schalock’s quality of life construct. Quality of life is treated as a
multidimensional concept that may be defined by consensus among those
who are close to the service user. Achieving quality of life for the service
user entails both meeting their basic needs and providing them with the
same opportunities available to any other person who has set life goals or
objectives that have to do with emotional, physical or material wellbeing,
interpersonal relationships, personal development, self-determination, so-
cial inclusion, or rights of any kind. The assessment process involves the
use of various standardized scales as well as user satisfaction surveys.

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

of their personal situation, as well as support requests and acceptance of

support tailored to specific individual needs. Respect for the person’s self-
determined course of action after discussion and/or consensus is also a
Over time, needs will vary: a person can go from requiring intensive
help to needing only occasional assistance, or the other way around. Sup-
port must therefore be flexible and resourceful. Support is structured ac-
cording to a number of basic principles and follows a plan that is tailored
to the person’s specific situation. Planning, implementation and follow-up
are provided in three stages:
Intake stage: The intake stage begins with the person’s application
to join the programme. It includes collecting and assessing autobiographi-
cal data to elicit the person’s self-narrative and personal goals and to pre-
pare for the transition. This stage involves a number of interviews with the
service user, visits and interviews with people who play a key role in the
service user’s life, and the forming of the Circle of Trust.

Transition stage: The transition stage comprises the earliest deci-

sions and support interventions: searching for housing, fixing up the place,
getting to know the new neighbourhood and its local resources, and every-
thing else that needs to be done prior to moving in.
Intensive support stage: As soon as the person moves into their
new home, intensive support is allocated to ensure maximum safety and
backup, and to help design an appropriate Personal Care Plan according
to how the person is adjusting and functioning in the new environment.
Regular support stage: After initial adjustments have been made
and once new habits and routines are in place, support is gradually tapered
down to the level set forth in the Personal Care Plan.
There is no predefined duration for each of the stages in the process;
instead, timing depends on the person’s circumstances and requirements.
Contingency planning is important: once the regular support stage has
begun, the person may change or circumstances may arise that alter the
person’s way of life and require the Personal Care Plan to be redesigned.
All the homes covered by this scheme have an assistance hotline to
activate resources in case of emergency.

Our service has obtained ISO 9001:2008 quality certification, which

it renews on a yearly basis.


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.

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

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


Cardiology Neuropsychology
Maxillofacial Surgery Dentistry (Paediatric and Adult)
Dermatology Ophthalmology (Paediatric and
Dietetics and Nutrition
Clinical Psychology
Internal Medicine
Orthopaedics and Trauma
Neurology (Paediatric and Adult)

Combining its healthcare role with the dissemination of knowledge,

the Centre has published SD-DS. International Medical Review on Down
Syndrome without interruption since its launch in 1987. Its aim is to spread
awareness and knowledge of medical aspects of DS by publishing original
articles, reviews of existing information, and regular updates on the most
promising developments both in basic science (molecular biology and ge-
netics) and in areas that have an impact on daily medical practice. This
journal also deals with psycho-educational aspects of topical interest or
linked to medical issues.

** Subspecialty care is provided in partnership with associate specialists working in

Catalan university hospitals.
56 Fundació Catalana Síndrome de Down

The Down Medical Centre was set up for maximum effectiveness

from its inception. Pioneering medical centres that cared for people with
DS in other countries were reviewed at the time of its foundation, and
the original medical staff came up with a consensus-based approach to
medical care consisting of regular checks scheduled according to patient
age and carried out by the relevant specialists. This was the Foundation’s
Health Programme, first published in Spain by the Butlletí de la Societat
Catalana de Pediatria (1987, 47:33-41). It applies to patients with DS
from birth or from diagnosis through their entire lifetime.


The programme is designed according to universally accepted
guidelines to achieve its stated purposes. It is regularly updated in light of
relevant scientific developments and of the Centre’s own accrued experi-
ence, currently numbering over 2,500 cases since 1987. By implementing
of this healthcare schedule together with the early stimulation programme
we ensure that every participant with DS will reach his or her highest
Basic preventive care under the health programme is structured
separately for children and adults; beyond that, individual schedules are
adjusted when any disorder is detected.


The Childhood Health Programme comprises all routine specialist
checks from the first paediatric examination at the Centre until the patient
is 18 years old.

1. Birth to Three Months

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

• Other tests, as needed.

2. 3-11 Months

a) Paediatrician
The infant is examined with a particular focus on the fol-
• Assessment of growth, general condition, and nutritional
• Genitals: checking for undescended testes, etc.
• Immunization according to the adapted immunization
• 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

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-

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

• Health and hygiene habits.

• mmunization according to schedule.

b) Paediatric ophthalmologist
• Annual or biennial eye examination.

c) Otolaryngologist
• Annual or biennial ear examination, including associated

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
• Hearing tests.
• Polysomnography, if required.

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.

d) Paediatric Neurologist (under 14 years), Adult Neurologist

(15 years and up). Annual or biennial visits.
• Assessment of neurological development.

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


Routine checks to be carried out after age 18 years:

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.

c) Neurologist
• Regular assessment every 5 years up to age 40 years, and
every 3 years subsequently.

d) Neuropsychologist (biennial assessment up to age 30 years,

annual assessment afterwards)
e) Orthopaedist
• Routine general checks.

f) Other yearly checks

• Dentist
• Gynaecologist

g) Other biennial checks

• Ophthalmologist
• Endocrinologist

h) Other 5-yearly checks

• Cardiologist

i) Individualized visits
• -Geriatrician (starting at age 40-50 years). Assessment of

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

* Especialitats a partir de 2008 i 2011, degut a l’augment de l’esperança de vida, a l’en­

velliment de la població i a les necessitats detectades, per avaluar i detectar l’evolució
neurològica, el risc d’envelliment precoç i altres manifestacions de fragilitat.


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.

* Formerly known in English as the Therapeutic Attention Service

66 Fundació Catalana Síndrome de Down

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.

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).

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

interventions in pursuit of rehabilitation. The Spanish Federa-

tion of Psychotherapist Associations defines psychotherapy as
‘treatment of a psychological nature which, given any physi-
cal or mental manifestations of human pain or discomfort, pro-
motes changes or modifications in behaviour, adjustment to the
environment, physical and mental health, integration of psycho-
logical identity, and biopsychosocial wellbeing’. This definition
also applies to people with IDs. In addition to treating symp-
toms, psychotherapy helps individuals construct their identity
and discover their own wishes.
3.2. Speech and language therapy: Speech and language ther-
apy treats language disorders, but can also foster communica-
tion and encourage reasoning and verbal expression of feelings.
3.3. Physical therapy: Physical therapy is provided on an in-
dividual basis to address developmental delays, movement dis-
orders, and missing abilities in paediatric patients, as well as to
treat physical problems caused by:

• neuromuscular disorders
• musculoskeletal disorders
• cardiovascular and respiratory disorders

4. Advice and support for families and for professional work-

ers: When working with patients with IDs, it is essential for their parents
or guardians to be engaged in the process. There needs to be an effective
therapeutic alliance between the family, the patient, and the therapist.
5. Professional networking: A network approach is fundamen-
tal. By contacting other professionals who know the patient, a therapist
can identify needs that arise for the patient in different settings, and can
also provide support or guidance to other professionals, on request.

6. Training of professional care providers: We achieve our train-

ing objectives through courses, lectures, supervisions, and seminars, both
by participating in them and by organizing them ourselves.
7. Research and publications.

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).


Psychology and psychiatry:

• Diagnosis and individual or group psychotherapy, as

well as drug treatments for mental health issues
• Family support
• Advice

Speech and language therapy:

• Diagnosis and treatment of speech disorders, on an indi-

vidual or group basis
• Advice

Physical therapy:
70 Fundació Catalana Síndrome de Down

• Diagnosis and treatment of motor development disorders

• Advice

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:

• Personal skills groups are for adults with DS who want

to work on self-knowledge, self-acceptance, relationship
strategies and social inclusion.
• Dual disorder groups are for children with DS and an
autism spectrum disorder. They work on relationships
to improve communication. We also host talks for their
parents, to help them understand the disorder and tell
the difference between issues specific to DS and issues

related to the disorder. This helps parents come up with

strategies and guidelines to help improve their child’s
personal growth and quality of life.
• The communication skills group for adults with IDs uses
language to enhance interaction skills, foster personal
and social development, and improve group members’
ability to relate to others, participate socially and convey
their ideas and wishes.

Encounter groups

• Sibling groups are for siblings of people with DS who

want to meet other siblings, receive information and
guidance about DS and about the Foundation, share their
sibling experiences, express their feelings and reflect
upon what it feels like to have a sibling with DS when
they’re at school, with friends or on the street. Meeting
intervals vary according to need.


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-
• 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

• Prospecting for new resources, forms of aid, and benefits, as

well as new intervention models and novel activities for fami-
The overall support we offer families includes the following:
1. Individually tailored intake and support: We see each family
as unique, beyond the shared fact of having a child or family
member with an intellectual disability; and we listen to them
and deal with them accordingly.
2. Family support groups: A setting for parents and grandpar-
ents to share experiences and discuss concerns. Support groups
are an opportunity to meet other families who will ‘get’ their
unique situation better than anyone else; a place for sharing and
3. Hospital-based intake: We aim to be there for the family as
soon as possible to provide practical and emotional support, tell
them more about their child’s diagnosis and help them link up
with our services and with other families.
4. Training and seminars: We organize courses and lectures for
parents and professionals, addressing relevant topics to enhance
training and improve families’ quality of life.
5. Research and publications: We are involved in several work-
ing groups aiming to improve family support and care and thus
help enhance the quality of family life.


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

relationships, enhance education and leisure, and encourage sharing of

We find or make the time to organize a real Christmas party for
the younger children; to foster relationships among families at our Spring
Get-Together; to join parents attending national meetings and symposia;
to provide learning opportunities such as our Coffee Chats; to promote
the publication of helpful books and handbooks; to encourage healthcare
professionals to understand the need for support at times of diagnosis; and
so forth.
Our Family Support Service changes and innovates to stay apace
with society and its new realities and needs.


The Family Support Service includes specialist legal advice from a

lawyer who handles family enquiries about:
1. incapacitation proceedings and appointment of a guardian
2. extension or reinstatement of parental authority
3. issues involving inheritance law
4. assessment of diminished capacity and the ensuing rights and
5. employment and social security law
6. tax issues


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.


a) Courses and seminars are held regularly according to identified

needs and demand. We highlight the following:

Open Classroom. This is a basic training course that brings to-

gether all professional workers involved in the school inclusion
process. The aim is to provide information and training on the
needs that a child with a disability may have in a mainstream
Seminar: Language in Children with Down syndrome. Resourc­
es to Encourage Language Development. Language develop-
ment theory is used as a framework for discussion; an analysis
of language in the child with Down syndrome (DS) leads to the
identification of resources and strategies which may be useful
for everyday school life. Since 2002, this seminar is also taught
as an online open learning course hosted by the Universitat
Oberta de Catalunya.
The Sexuality of People With Intellectual Disabilities. A course
on the development of sexuality and affective relationships in
78 Fundació Catalana Síndrome de Down

people with intellectual disabilities (IDs), based on identity

construction, including both a theoretical component and case
Seminar: Towards Person-Centred Planning. Theory and prac-
tice for planning home supports for persons with IDs.
Seminar: Mental Health and Down Syndrome: When Is Behav-
iour Pathological? A seminar to analyse typical affective and
behavioural disorders as well as strategies to address them.
Seminar: Job Placement and Entering the World of Adults for
People with Intellectual Disabilities. Analysis and considera-
tion of various aspects of the mediation methods used by the
Foundation’s ‘Collaborate’ Integrated Employment Service to
provide ongoing support for workers. Includes case discus-

b) Periodic training activities:

• International Conferences. Our international conferences

are a means of disseminating information on DS. All of the
Foundation’s international conferences held before 1997
dealt with both medical and psycho-educational issues. As
there was considerable interest in each of these two areas,
the original series of conferences was then split into two, so
that separate symposia are now held on alternating years.
The I International Conference on Chromosome 21 and
Medical Research on DS was held in 1997.


• Seminar and encounter group: What You Need to Know:

Strategies for Raising a Child with Down Syndrome.
• Lectures: The Foundation organizes lectures and seminars
for professionals, service users, and family members. Three
lectures are held every year during the school term: two on
health matters and one with psycho-educational content.

Additionally, lectures on different aspects of DS or other disabilities

are offered year-round, on request, to institutions, schools, employment
centres, and others.


The Foundation has a series of training agreements with universi-



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
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.


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:

1. Awareness campaigns: Raising general awareness of the right

to normalization and full social inclusion of people with Down
syndrome and all other disabilities, using:

• the Internet (website, social media)

• the media
• public and private official events (promoting the Foun-
dation’s services)
• dissemination materials

2. Mutual cooperation agreements and relationships with local,

national, and international organizations in order to coordinate
reciprocal action. Highlighted activities include:

• joint awareness-raising and fund-raising campaigns

84 Fundació Catalana Síndrome de Down

• training courses that cover our everyday work, for fami-

lies and professional workers as well as for institutions
in Spain or abroad
• encouragement and selection of relevant research pro-
jects in medicine and genetics as well as education and
psychology, and fund-raising for the projects selected
• co-publication of the most recent studies in the field and
of methodological approaches considered relevant to our

3. Creation and identification of platforms and forums for per-

sons with disabilities to be heard:

• Èxit21: a tool for people with intellectual disabilities

to carve a niche in the media world. This project was
conceived, designed and implemented by its editors, and
was authorized in order to meet their demands. Their
challenge is to use new information and communication

technologies to be heard out, share opinions, thoughts

and concerns with the wide diversity provided by the
general pubic. Ultimately, this is about realizing every-
body’s right to free speech. Èxit21 will not only contrib-
ute to the education of its editors but is also expected to
become the Foundation’s chief vehicle of communica-
tion. People with disabilities are deprived of the right
to speak freely merely because of their disabilities. Our
ultimate goal is to enable them to handle their own com-
munication, so learning about the theory and practice of
journalism is essential.
• Welcome home: a blog operated by users of the Inde-
pendent Living Support Service to describe their activi-
ties and initiatives.

4. Publishing Service: The Publishing Service is organized in con-

junction with the Begoña Raventós Document Centre. Its pur-
pose is to disseminate new advances in medicine and genetics
as well as new developments in psychology and education for
children, teenagers, and adults with disabilities, through publi-
cations based on the daily practice and experience of the staff at
the Foundation. Foreign-language articles of potential interest
to our readership are also sought out, reviewed, and sometimes
translated and published.
The Publishing Service also publishes the proceedings of in-
ternational symposia organized by the Foundation. Lastly, SD-
DS, International Medical Review on Down Syndrome is a pio-
neering journal published three times a year and distributed for
free. It is indexed in EMBASE/Excerpta Medica, Índice Médico
Español (IME), Índice Bibliográfico Español en Ciencias de la
Salud (IBECS), and Scopus. The journal has a print run of 1000
copies, of which 500 are in Catalan and 500 in Spanish. Some
86 Fundació Catalana Síndrome de Down

Spanish-language copies are sent to Latin America. It is also

available online in both languages and in English, since 2002.
As of October 2014, full-text copies of the journal had been
downloaded or read 22,458 times. The link to SD-DS issues is
available from the Foundation’s website (fcsd.org) and from the
web portal hosted by Elsevier, the publishing group that took
over publication in 2010. Aside from the journal’s role as the
main communication vehicle for the Down Medical Centre and
for the Foundation’s activities and methods, its centrepiece is its
regular core content: two medical articles (one original article
and one case report), and one article dealing with psychology,
education, and/or existing models and opportunities for normal-
ized living. The aim is to articulate organic and psychological
aspects together in the same journal, for a whole-person per-


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-
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.

• To provide specialized material supporting research and the
daily work of professionals, parents, and students in the area of
• 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

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.

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-
Readers can browse these materials in the reading room by appoint-

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

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.

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.
90 Fundació Catalana Síndrome de Down

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.

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.

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

can be scanned and sent at the user’s request (email biblioteca@

fcsd.org). This is a free service.
• Information and reference service, to handle questions about
the Data Centre, how it works, and bibliographic and documen-
tary research.
• New Materials Newsletter, which lists new book titles, journal
articles, journals, DVDs, and other materials available at the
Data Centre. It contains the bibliographic references of all new
documents as well as their subject descriptors and summaries.
This is a monthly publication available at www.fcsd.org.
• Reading Corner, a project first set up in 2014 to encourage
reading among people with intellectual disabilities. This pro-
ject involved adapting a physical space within the Data Cen-
tre to encourage readers with shared affinities and interests to
cluster together, so that they themselves could create their own
opinion groups, reading groups, meeting groups, and so forth.
The open nature of this space is therefore very important. In
addition to this, the Begoña Raventós Data Centre provides
access to all easy-reading print, multimedia, and audiovisual
resources found in any of Barcelona’s libraries, and thus en-
sures access to information and culture for persons with intel-
lectual disabilities.


• 1988: INSERSO Photography Award for the “Integration in

Sports” series of photographs.
• Creu de Sant Jordi medal awarded by the Government of Catalo-
nia to Mrs. Montserrat Trueta, Chair of the Foundation’s Board
of Trustees, for ‘her outstanding work for the social integration of
people with disabilities’.
• 1993: Catalonia 92 Public Relations Award granted to the FCSD
“for its achievements in publicity and communication”.
• 2002: Special Award received by the FCSD in the First Edition of
the Catalonia Education Awards organized by the Department of
Education to acknowledge ‘hard work and exceptional dedication
in favor of school and social integration of children with DS’.
• 2004: Gold Medal of Honor of the Parliament of Catalonia
awarded to Mrs. Montserrat Trueta for ‘her work and dedication
to improving quality of life for people with DS and social integra-
tion for people with disabilities’.
• 2006: Solidarity Award in the Third Edition of the Llongueras
Fashion and Image Awards ‘for being the organization that con-
tributed the most to solving one of Spain’s social problems in
• 2007: The Spanish Red Cross awards its Gold Medal to the Foun-
dation ‘for work done in favour of people with DS’.
• 2008: Her Majesty Queen Sofía of Spain presents the Spanish
Ministry of Employment’s 2007 Gold Cross of the Civil Order of
Social Solidarity to Montserrat Trueta ‘to acknowledge her dedi-
cation, devotion and advocacy in support of the rights of people
with disabilities, and for her work at the helm of the FCSD’.
94 Fundació Catalana Síndrome de Down

• 2009: Cross of Saint George (Creu de Sant Jordi) awarded to the

FCSD by the Government of Catalonia to acknowledge ‘a bril-
liant track record in improving quality of life for people with DS
or other intellectual disabilities. The organization’s work facili-
tates integration of people with intellectual disabilities within so-
ciety and helps them achieve the highest level of dignity, respect,
independence and well-being.’
• 2010: Queen Sofía Award for Disability Prevention ‘for the work
done by the Down Medical Centre team to provide medical
answers to the dilemmas faced by families of people with DS
through biomedical research, health care development, dissemi-
nation and sharing of medical knowledge, with reliable social and
employment integration as the outcome.’
• 2011: Easy Reading Award granted to the Foundation’s reading
club by Associació de Lectura Fàcil, for encouraging persever-
• 2012: Ramon de Teserach Award granted by the Academy of
Medical and Health Science of Catalonia and the Balearic Islands
to recognize the health promotion work of the Down Medical
• 2012: Twelfth Xavier Fàbrega Solidarity Award from the Col·legi
Bell-lloc Alumni Association.
• 2014: FIS grant for the study of Alzheimer disease and Down
syndrome awarded by the Spanish Ministry for the Economy and
Competitiveness and Instituto de Salud Carlos III. Multimodal
studies of cerebrospinal fluid, magnetic resonance imaging and
amyloid PET scans jointly carried out by the Down Medical Cen-
tre and the Memory Unit at Hospital de la Santa Creu i Sant Pau.
• 2014: President Macià Labour Plaque granted by the Government
of Catalonia to recognize the work done for inclusion in employ-
ment by the ‘Collaborate’ Integrated Employment Service.


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.


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