Down Syndrome 2004

Fundació Catalana Síndrome de Down Services and Methodology

Title: Fundació Catalana Síndrome de Down. Services and Methodology Author: Beatriz Garvía. CMD Psychologist and FCSD Coordinator of Research and Tuition. Contributors: FCSD Technical staff; R. Borbonès, M. Golanó, M.J. Miquel, M. Peralta, J. Ruf and K. Trias. Coordinator: Katy Trias. Photography: Ivana Gutiérrez and Katy Trias. Translator: Mary Fons 1st. edition: 1999 2nd. edition (revised and expanded): 2004 Publishing secretary: Núria Boronat This book was made possible by Caixa Catalunya.

This book may not be reproduced or transmitted in any form, whether in full or in part, by any means, electronic or mechanical, including photocopying and recording, or by any information storage or retrieval system, without prior written permission from the copyright holders.

© FUNDACIÓ CATALANA SÍNDROME DE DOWN (FCSD) Comte Borrell, 201, entresòl, 08029 Barcelona E-mail: [email protected] Website: www.fcsd.org Director: Katy Trias Chair of the FCSD Board: Montserrat Trueta Cover design and layout: Barcelona Digital, S.L. Printed by: Barcelona Digital, S.L. ISBN: 84-921020-5-5 Copyright registration: B-11272-2005

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INDEX

Foreword to the 2nd edition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .7 Fundació Catalana Síndrome de Down Board of Directors

. . . . . .10

Organization chart . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .11 Down Syndrome . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13 Centre for Child Development and Early Intervention . . . . . . . . . . .17 Mainstream School Support Service . . . . . . . . . . . . . . . . . . . . . . . .25 Social Skills and Preparation Programme -PAS- . . . . . . . . . . . . . . .33 Col·labora, Job Integration Service . . . . . . . . . . . . . . . . . . . . . . . . .41 “I am going home”, Independent Living Support Service . . . . . . . .47 Down Medical Centre . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .53 Tuition and Training . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .65 External Relations and New Projects Service . . . . . . . . . . . . . . . . .71 Begoña Raventós Data Centre

. . . . . . . . . . . . . . . . . . . . . . . . . . .75

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Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .80

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FOREWORD TO THE 2ND EDITION

The second edition of this book was produced on the occasion of the 20th anniversary of Fundació Catalana Síndrome de Down (FCSD), founded in 1984 by Montserrat Trueta, who had been working for children with Down Syndrome (DS) and their families since 1978 both in a private and in a professional capacity. Her co-founders were a team of professionals and parents. The following year, she travelled with a team of specialists to Washington University in Seattle, WA (USA) for training, information-gathering and observation purposes. They returned with a wealth of new knowledge which they put to use in the Centre for Early Care and Stimulation which had been set up by the Foundation.

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Those new needs arose as the original newborns with DS and other children with DS or other mental disabilities grew up. The Foundation’s mission was clear from the outset: to work towards better quality of life for persons with mental disabilities and secure true integration in society, based on the idea that quality of life is linked with gains in autonomy, acceptance of disability, and capacity for self-management. This overall mission gave rise to the Down Medical Centre; to the Mainstream School Support Service, developed to support school integration; to the Social Skills and Preparation Programme, to ensure leisure time and foster the social skills of its clients; and to the Col·labora, Job Integration Service, which places clients in mainstream employment, following the model implemented in Genoa, Italy, which uses a pioneering mediation method.

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Since then, the Foundation has been growing and expanding its services, as well as adapting its methods according to emerging needs.

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The original babies seen in 1984 and the ones that followed (up to a current figure of 1,000 clients) have now grown up, received an education and, in many cases, are placed in mainstream companies, earning wages, enjoying social and affectionate relationships, and organizing their own outings, travel, and leisure. Sooner or later, they come to want emancipation; they want to live, like their siblings, in a home of their own. Parents who adhered to our philosophy and who had already taken the risk of giving their children freedom and autonomy also supported this endeavour, so Katy Trias, like her mother 17 years before, travelled to the US and the UK to learn about independent living in those two countries. Using this information and working with the support of her team, she set up “I'm going home”, (Me’n vaig a casa), an Independent Living Support Service to afford individuals with disabilities the chance to pursue a normalized life, choosing where and with whom to live. The Programme provides tailored support for clients and their families to achieve this objective. It was launched on an experimental basis in 2001 and is now consolidated as a FCSD Service receiving government funding.

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The present edition of the Services and Methodology book has been revised and expanded to include the new Services as well as changes to existing ones, bearing witness to the dynamism, usefulness and on-going development of FCSD.

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INTRODUCTION

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

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private organization founded on March 30, 1984 and declared to be of public utility on October 24 of that year. Its registry number in the Catalan Government's Registry of Catalan Foundations is 61. The FCSD was born out of a common interest, shared by parents and professionals alike, to gain a better understanding of Down Syndrome (DS) by carrying out research and doing practical work in the fields of education, psychology, medicine and welfare. From its very beginning, outstanding international scientists specialized in subjects relating to DS have given the FCSD their valuable support and on some occasions even their personal participation, if necessary. The FCSD technical team is made up of a group of professional psychologists, educationalists and physicians and a group of scientific advisors. Its pioneering spirit led the FCSD to be regarded as a reference centre consulted by a large number of public and private organizations, both in Spain and abroad. The message which the FCSD wishes to convey is that people with DS have inherent capacities and are for optimal development. The FCSD's main goals may be outlined as follows: ●

To work for better quality of life for persons with DS, in order for them to attain full social integration. This aim extends to all persons with learning difficulties.

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entitled to obtain resources as appropriate to meet their individual needs

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To act as a permanent body, promoting studies and research in the medical, psychological and educational fields, and providing the experience and knowledge thus gained to public and private organizations, institutions, and to society in general.

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

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

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a result, they approach their disabled schoolmates in a natural, prejudicefree way, allowing real integration to take place. The FCSD strives constantly for the rights of people with disabilities to be safeguarded, both by pressing for compliance with existing legislation and by lobbying for new or improved laws to defend and promote the full social integration of people with disabilities. Finally, biomedical research on DS is also part of the FCSD mission,

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in the form of constant research per se and regular publication of the latest findings. For this reason, the FCSD confers the Ramon Trias Fargas Prize on DS Research every two years. This prize is awarded for scientific research or experimental work concerning genetic, perinatological,

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

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scientific or academic institution, or any institution related to DS.

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FUNDACIÓ CATALANA SÍNDROME DE DOWN BOARD OF DIRECTORS Honorary Members of the Board 10

Victoria de Los Ángeles (RIP) Maria del Mar Raventós Josep M. Espinàs Ramon Trias Fargas (RIP) Francisco Domínguez del Brio Robert Vergés (RIP)

Members of the Board:

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Chair: Vice-President: Secretary: Treasurer: Member: Member: Member: Member:

Montserrat Trueta Antoni Trias Immaculada Bosch Carmen Buxeres Juan Manuel Cabrera Joan Uriach Katy Trias Marta Corachán

PUBLICATIONS AREA

BEGOÑA RAVENTOS DATA CENTRE

COMUNICATION AREA

MAINSTREAM SCHOOL SUPPORT SERVICE

SOCIAL SKILLS & PREPARATION PROGRAMME -PAS-

COL·LABORA, JOB INTEGRATION SERVICE

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“I’M GOING HOME”, INDEPENDENT LIVING SUPPORT SERVICE

ADMINISTRATION

HUMAN RESSOURCES AREA

TRAINING AND SUPERVISION AREA

DOWN MEDICAL CENTRE

CENTRE FOR CHILD DEVELOPMENT AND EARLY INTERVENTION

ADMINISTRATIVE COORDINATION DEPT. FINANCIAL AREA

RESEARCH AND TRAINING COORDINATION DEPT.

EXECUTIVE DIRECTOR

MEDICAL & PSYCOSOCIAL RESEARCH AREA

SERVICE COORDINATION DEPT.

External advisors

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FUNDACIÓ CATALANA SÍNDROME DE DOWN ORGANIZATION CHART

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DOWN SYNDROME

The precise reasons why the non-disjunction mechanisms that cause DS are triggered remain unknown, though it has been proven that nondisjunction occurs regardless of race, education, social background, and standard of living. However, it has been shown that DS is more likely to appear when the mother is over 35 years old at the time of conception, with the risk of bearing a child with DS increasing progressively from age 35 onwards. But paradoxically, DS births occur far more frequently among women under 35, first, because they are the chief child-bearing group; and second, because pregnant women over 38 are routinely subjected to prenatal screening. Two of the screening methods are amniocentesis (extraction of amniotic fluid through the abdominal wall between the 14th and the 18th week of pregnancy) and chorion villus sampling or CVS (extraction of a small piece

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

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

Though all DS carriers have a chromosomal aberration, they do not all present the same characteristics or physical features; malformations are not even always present. The only distinct characteristic shared by all persons with DS is a lowered intellectual level. There are no varying degrees of DS; traits and personality vary as widely among individuals with DS as among individuals without DS. In fact, people with DS are more similar to people without DS than different from them. Ninety-five percent of children with DS present mild to moderate intellectual disability after

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receiving appropriate early intervention. Whatever the case may be, every person with DS possesses inherent values, which should be nourished. Children with DS have a 40% rate of heart malformations, some of them so serious that they will require surgery during the first years of life. A much smaller number (5%) present gastrointestinal problems that require immediate neonatal surgery. While many different medical treatments for Down syndrome have been recommended over time, none has proven to have a beneficial effect on DS so far. Early intervention alone has been found to be highly useful in stimulating the potential of each individual. Medical care primarily focuses on prevention of the most likely health problems to ensure that easily treated conditions do not become chronic. It must be stressed that DS is not an illness, but a genetic disorder, which is sometimes accompanied by health problems.

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Individuals with DS must be considered from a whole-person perspective and offered the social assistance, medical care and educational services best suited to their full personal development.

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CENTRE FOR CHILD DEVELOPMENT AND EARLY INTERVENTION

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The birth of a child entails a series of deep psychological changes for the parents, connected with their wishes as child-bearers. These changes usually begin during or even before pregnancy. The baby-tobe already exists in the parents' imagination before birth. Both parents imagine a baby in whom they will see themselves reflected. Moreover, the baby also stands for continuity of its parents' own values. A whole series of fantasies revolve around the child, to such an extent that they are part of the initial bond, which the parents create with the baby. After birth, these fantasies are gradually adjusted to the reality of the characteristics of the newborn baby. The whole of this adjustment is a complex process of significant importance for the baby's future development as an individual.

This mourning process is complicated, as it involves breaking the internal bond with the ideal child and coming to terms with reality, that is, with the fact of having a child with a disability. It takes a long time, but it is necessary in order to reconstruct a new internal place for the real baby, which enables a desire to become its parent. This process leads to a progressive acceptance of the facts. Parents find ways to identify with their DS newborn by thinking of the child as someone who is growing up with his or her own personality, at a certain rate of development, with a range of possibilities ahead – in short, someone with an essence of his or her

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Faced with the news that the baby has a learning difficulty such as DS, parental narcissism is struck to the core. The cause is not only the diagnosis as such, but a whole welter of intense feelings towards the baby and towards themselves and each other. There is a break with the previously established bond, and a process of mourning for the loss of the desired child then begins.

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own – but also with a family likeness. This will also allow a new set of fantasies to be created around this baby, so that the parents may look forward to unexpected gratification from their unexpected child.

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When a baby has DS (or any other disability), the idea of disability is wrapped around the identity of the newborn, preventing parents from seeing the actual infant. Like any other child, a baby with a handicap needs to be spoken to, to be played with and to be loved, but these needs are often complicated and hard to fulfil because the parents

wanted a different baby and either cannot approach their child or do not know how to do so; if they do try, they may do so inappropriately. The birth of a child with a disability causes a great deal of anguish, and generates many complex psychological reactions, which vary according to the nature of the disability or condition, and the factors that caused it. Briefly, from a state of shock and anguish, followed by denial ("The doctors got it wrong"), anger, and sorrow, parents reach a state of equilibrium; with it emerges a feeling of confidence in their own ability to care for the child just as it is. Ultimately, the family reorganizes its life

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according to the child's needs and adjusts to the situation. The parents need to be able to complete the mourning process produced by the arrival of a child unlike the expected one. All this points to the importance of early intervention not only for the baby, but for its parents, too. The intense and complex feelings and emotions experienced by parents when first faced with the diagnosis of DS clearly show that reporting this diagnosis is not a single event but a whole process with the dual purpose of imparting the relevant information and providing a space to contain parental anguish and emotional reactions.

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The CCDEI of the FCSD, is part of the Early Intervention Sectoral Programme of the Institut Català d'Assistència i Serveis Socials (Catalan Institute of Social Care and Services), which reports to the Catalan Department of Social Welfare. The catchment area assigned to the CCDEI within the programme comprises the districts of Sarrià-Sant Gervasi (District 5) and Esquerra de l'Eixample (District 2) in the city of Barcelona. The CCDEI was originally founded as the “Servei d’Atenció Primerenca” (Early Care Service) of the FCSD in 1984 and subsequently took on the functions and objectives outlined in the district-based Early Intervention Programme. In October 1998, the FCSD service began to operate under contract to the Catalan Institute of Social Care and Services; as a result, the assistance provided is now fully a public service. In 2001 the name was changed to Centre de Desenvolupament Infantil i Atenció

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

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Primerenca (CCDEI - Centre for Child Development and Early Intervention).

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Early intervention, a form of treatment basically directed at children with developmental disorders as well as their families, is intended to assist in the process of structuring the child's personality, enhancing his or her development, providing the necessary resources for adjustment and growth, and last but not least, assisting and supporting the child's family. The Centre operates as an outpatient clinic, providing assistance on an individual basis; frequency of visits depends on each child's age and needs. The functions performed by CCDEI are outlined below: 1.- Diagnosis of requirements: At the family's request, a diagnostic process is set up, including interviews with both parents, assessment of the child's developmental stage, and interviews with the child's teachers when deemed necessary, if the child attends school. Once this information is obtained, it is discussed with the parents prior to beginning treatment.

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Basically, the purpose is to establish a functional diagnosis of the child's problem, and, if possible, to determine the aetiology of the case when it is undefined. Tending to the parents is also of paramount importance at this first contact. As a rule, when they first come, parents are full of anguish and very uninformed concerning the nature of the problem. The Centre's professionals provide care for the child and support for its parents in order to contain the fear and anxiety and help them discover the child behind the disability. When the child is older (2-3 years old), the parents' anxiety is by no means lesser. Not knowing the child's specific problem is a source of worry and anxiety. Sometimes, a highly unspecific diagnosis that is not based on an underlying organic explanation may be hard to grasp. Delayed language acquisition or slow maturity, difficulties in socializing,

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or personality or behavioural disorders all cause highly ambivalent feelings in the child's parents, who must therefore receive assistance at the same level of intensity as the child in order to encourage positive outcomes. 2.- Establishing and implementing treatment objectives: Once an approximate diagnosis has been established, the aims of therapy are determined and intervention strategies are put in place to reach out to the individual child.

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Treatment approaches can be summed up as follows: A) Direct treatment Each child receives individually tailored treatment by a qualified professional according to the nature of his or her problems. The interdisciplinary team working at the Centre, which includes psychologists, education specialists, speech therapists, physiotherapists, a neurologist, and a social worker, allows treatment to be individually designed for each case instead of having a pre-established pattern of intervention

C) Mainstream School Support Service The child's process of adaptation to the school environment is considered a fundamental element in the social and personal development of the individual. The Centre for Child Development and Early Intervention’s follow-up function therefore has a two fold role: ●

On the one hand, the therapist in charge of the case should identify what kind of needs the child will have in this expanded environment

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B) Family care As mentioned earlier, treating the child's whole family is considered essential from the very first. A key part of intervention is monitoring family relationships, especially the child's role within the family and the meaning attributed by the parents to their child's disability or problem.

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and evaluate how the child socializes with its schoolmates and adults. This is done by direct observation of the child, in real-life school situations, and by interviewing the schoolteacher.

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On the other hand, it is important for school staff to be given support and advice, helping them to identify the needs and to detect the differences within a class, and to identify resources to meet these needs. More often than not, teachers focus on the things a child is unable to do, and this can be very frustrating for the child, to such an extent that it may block his or her desire to learn. On some occasions, this may also lead to a passive attitude — "I don’t know" or "I can't do it" —, which is actually masking the child’s despair at the realization that he or she is unable to do the same things as the rest of the schoolmates. Addressing this situation may give the child the required self-confidence.

3.- As the FCSD's Early Intervention Service, the CCDEI deals with all kinds of enquiries from parents who seek early counselling or information about DS, resources available, where to apply for other assistance, and so forth.

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4.- Another important CCDEI activity is screening and prevention, identifying children with developmental disorders or who are at risk, reaching out to all children within the catchment area so that they may benefit from CDIAP services whenever they are required. To this aim, the CCDEI works in many different ways to raise awareness and heighten professional sensitivity to the importance of identifying any signs of potential developmental disorders as soon as possible and providing specialised early intervention to prevent future trouble.

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

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MAINSTREAM SCHOOL SUPPORT SERVICE

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The Mainstream School Support Service (MSSS) was set up in 1985 in order to provide support and counselling to all children with DS aged 6 to 16 who are attending mainstream schools and guidance to their schoolteachers and parents. A major milestone for the social inclusion of people with disabilities was Decree 117/1984 by the Government of Catalonia, which regulated the structure of special education to ensure the integration of children with special needs in mainstream schools in Catalonia according to the guidelines set in the Spanish LISMI Act (the "Act for Social Integration of People With Disabilities"). In order to provide a school environment that is as unrestrictive as possible and diversify school response to individual pupils' needs, schooling objectives must be generalized so that the child can develop satisfactorily after suitable curricular adjustments have been made.

Thus, as mainstream schools gradually came to receive more institutional resources and support, the FCSD turned to other important aspects of development, such as acceptance of disability, personal autonomy, the construction of an identity, and the attainment of a certain degree of maturity, setting the individual foundation for better social integration. The purpose is not to interfere with the school's responsibilities, but to concentrate on those aspects which may lead, with specific care, to a better development of the individual, who will

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Since its founding in 1984, the FCSD has directed all its efforts to improving the quality of life of people with DS through social integration. Any action undertaken by the FCSD is the result of elaborate analysis reached by its team of professionals through careful observation and evaluation of daily practice. This team of professionals has shown a high degree of flexibility in its work, so FCSD methodology has varied as different needs have become apparent. Team methodology has evolved and specialized over the years in response to identified needs.

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therefore adapt more successfully at school, within family, and in society. With this goal in mind, the MSSS has devised a working procedure which relies on groups as a specific resource and a form of therapeutic intervention to enhance maturity and integration. 26

The service focuses on groups because they provide two major elements which are considered indispensable in the quest for identity, namely, acknowledgement of the disability and confirmation of the great many differences within any group of people with DS.

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The group introduces the individual to vital peer-group forms of relationship ranging from complicity to open confrontation to a desired and

self-built reciprocity; these relationships mould friendships, which play a major role in the development of the individual A group of people who share similar personal characteristics (Down syndrome, in this case) offers all of its members the opportunity to discuss what it means to each one of them to be an individual with a disability. The

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possibility of sharing disability-related aspects of everyday life, such as instances of clumsiness, rejection, confusion, speech trouble, and so forth, enables individuals to express and acknowledge this side of themselves. Likewise, group members observe, analyse, and come to realize what each person is able to do, what each person is like, each member's likes and dislikes, and the different skills and capabilities that they each have. In so doing they become aware of the fact that there are as many differences among them as in any other group of people: children with DS are also different from each other.

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Analysing similarities and differences is a fundamental element for the construction of one's personal identity, a fundamental task within a group. To the extent that individuals can consider the ways in which they are similar to or different from other people in the different groups they belong to, they will gradually be able to discover their own uniqueness. The Mainstream School Support Service of the FCSD has evolved from individual therapy to its current group therapy approach, though individual treatment is not ruled out if required. Groups are set up according to chronological age and individual needs.

Groups get together to facilitate creative work and to help members cope with psychological issues. Members feel that they have to cooperate, to give their own opinions, and so forth, eventually enhancing socialization. The treatment group establishes firm bonds of friendship which improve individual and mutual understanding of self and may be carried forth to other groups. Belonging to a group is in itself therapeutic and ties in with the healthier aspects of group membership in everyday life (e.g., sports team, hiking group, or class). Doing things in the company of others and sharing in a common task is rewarding and therapeutic per se.

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When age and disability are similar, group work enables members to help each other and to express more freely what they feel. It also makes them aware that there are other people with the same or similar problems, so they become less inhibited when talking about themselves.

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As mentioned earlier, different types of groups are set up according to age and needs: 1.- Groups of children aged 7 to 9 have the following goals: ●

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● ●

To contribute to a better self-understanding of each member. To develop typical forms of social interaction among children. To promote the organization and structuring of personal activities (symbolic play).

2.- Groups of children aged 9 to 13 have the following fundamental goals: ● ●

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To understand and accept their own personal situation. To create strategies and develop resources which will help members find their place in their immediate social and cultural environment and learn the rules that apply in this environment. To help enhance the communication skills of group members.

3.- Groups of teenagers aged 13 to 16 have the following goals:

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To contribute to the development of each individual's personal identity, including aspects such as age, gender, disability, position within the

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● ●

family and society, and promote an awareness of age-appropriate references. To promote personal and psychological autonomy. To influence the teenager's view of the future, encouraging a reconciliation of possibilities and limitations.

Personal identity - defined as self-image - is first moulded by parental perceptions of the child within the family structure and marked by the place the child holds in other people's desires. It is important for children to know whom they resemble, to find the roots that make them part of their family, of their genealogical tree. This is difficult for individuals with DS. Very often parents say things like: «DS children all look alike but we don't see any likeness to anyone in the family». This is because parents have trouble identifying with a son or a daughter with DS, which makes them feel upset. Raising a child is a complex matter, so working with parents as their child with DS develops and grows is a basic priority of the Follow-up Service. Once a child has found his or her own identity, accepting the weaknesses and more developed aspects of DS, he or she is in the best

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conditions for social integration not out of a desire to be like others or to make comparisons or focus on the things that he or she cannot do or achieve, but rather from the acceptance of his or her own identity, with its limitations but also with full awareness of his or her own possibilities.

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Peer group work is considered fundamental as it provides a space where children with disability can talk to each other, be listened to, reaffirm themselves, and say what they think; a space where their personal experiences can emerge and subsequently, as mentioned, be carried forth to larger groups and society at large. Group dynamics and methodology allow a child to join different groups as he or she develops and matures. Group influence has a direct bearing on the capacity to feel at ease, enjoy a pleasing social life, use the group's therapeutic resources, and solve problems successfully.

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One of the main advantages of group work is an overall improvement of interpersonal relationships. Each boy or girl becomes closer to his or her friends and family and, last but not least, becomes more flexible, in the sense that he or she can accept and adapt more readily to social and personal circumstances, and change his or her initial aspirations of, say, "becoming a doctor".

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Once the effectiveness of group work had been established, in 1997 the MSSS decided to open group treatment to younger children (5-6 yearolds). At this age, groups consist of twosomes. The reason is the Followup Programme's main aim, which is to facilitate the discovery of the other person as an equal. This highly controlled situation helps the child to understand, take the other person into account as an individual and socialize with him or her, learn to share and communicate, and realize that there are other children with DS.

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The Service also provides individual therapy for children who, for specific reasons, are unable to adapt to group work. In addition to all this, the MSSS organizes teaching activities on request for teachers and professionals. It also provides guidance and advice to professionals involved in the child's or teenager's education. Psychoeducational follow-up takes place within the school with all the professionals involved.

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

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FCSD

SOCIAL SKILLS AND PREPARATION PROGRAMME -PAS-

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Development and growth of individuals with disabilities are often hindered by a number of matters which often bear no connection with intellectual disability as such or with lack of possibilities or potential. The concept of disability calls to mind thoughts of retardation or immaturity; because of this, children with DS are as a rule not encouraged to face the little problems of everyday life, problems they could probably cope with themselves. Though training programmes for people with disabilities include academic tuition and the acquisition of social habits, these remain incomplete. There is still a gap in terms of teaching people with DS to solve small everyday problems by using their own practical judgement and creativity.

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

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To this purpose, the FCSD runs a number of services that work towards a thorough development of the capacities of individuals with DS and other forms of mental handicap. The implementation of the LISMI Act in Catalonia showed that children with DS are able to attend mainstream schools, a possibility extended to other mainstream social environments.

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● ●

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The leisure programme. The groups for ages 16-20 in the Mainstream School Support Service.

The admittance of children and teenagers with DS into regular schools is contributing to full integration in society and in the job market as well. However, mainstream schools at present still tend to disregard certain issues that are not very academic but which are essential for people with disabilities to join the adult world, things like getting ready to have a social life and to face everyday problems. These are the points that the FCSD is seeking to develop.

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Very often FCSD staff have come across adults with disabilities who are intellectually and academically capable of doing a specific job, but who

have serious difficulties when it comes to accepting rules, getting about town, expressing their choices, opinions and problems, or socializing with fellow workers. Efforts are being made from different spheres so that this type of training is included in special programmes in order to support young people, adults, and their families in the process of leading normal lives.

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A 1985 Organization for Economic Cooperation and Development (OECD) report on the social integration of people with disabilities stated that job training is unlikely to succeed unless social preparation is provided. The report also warned that "protracting school even further cannot be a solution. The point is not to provide more of a given type of education, but to change it qualitatively. In this change, special reference must be made to social aspects and therefore to autonomy. This sort of education is a slow, gradual process beginning at childhood".

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According to the OECD's experts, the transition from childhood to adulthood can be defined by the following characteristics:

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● ●

Personal autonomy and acknowledgement of adulthood. Active or productive life to ensure economic independence.

Social relationships and active involvement in society. Role change within the family.

The FCSD relies on the PAS programme to help young people develop in these ways so they will grow ready to join the adult world when the time comes.

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The programme offers the group a space for trial and error, a testing ground where members can go wrong and later learn from their mistakes, look for alternatives when faced with a conflict so that they can feel control over their own progress. The overall intention is to help young people feel capable in ways appropriate to their age so they can claim their rightful place within the family and in society. 36

The programme comprises the following: 1.- Preparation and training to develop social competencies. Courses. The Service runs specific training courses at three stage levels: introduction, consolidation, and maintenance for young people and adults to develop different skills that enable adult individuals to function at full capacity in their daily and social lives. These courses are designed and adapted as the needs of clients who are joining adult life are gradually identified. Course examples include Basic Cooking, Independent Travel, Money Use and Management, or Use of New Technologies. All courses are run on a 2-hour weekly basis. 2.- Leisure.

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Promotion and encouragement of leisure activities that help enhance social competencies in order to increase the chances of individuals with mental disability and provide access to different types of leisure activities offered by mainstream public services. Convening of youth and adult groups that receive support to choose, plan and carry out recreational activities in town during their leisure time. 3.- Participation Area. Areas are set up in town to encourage settings that lead to social exchange and relationships.

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● ● ●

Punt Cafè. A gathering spot. Espai Cançons. Singing and learning together. Promotion of holiday activities.

4.- Guidance and awareness. ●

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Guidance, advice and cooperation are offered to other institutions and/or professional specialists working in this area. Care and guidance are provided to parents and potential clients regarding the participation of individuals with disabilities in society. The Service's clients are encouraged to join mainstream activities and monitored in that context.

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Preparing members to acquire knowledge of themselves, of their own needs and of the role they play within the family and in society, accepting their limitations, but also being aware of their capabilities.

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Helping to develop social skills.

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Helping to develop awareness of the social environment.

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The PAS programme operates with these goals in mind:

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Developing the individual's autonomy, paying attention to psychological as well as functional aspects.

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Conveying information concerning the rights and duties of every individual as an active member of society, so as to facilitate real participation in society.

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Increasing the range of possibilities that people with a disability may have, in terms of various forms of recreation, access to existing activities in the community (municipal centres, public sports, etc).

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Helping participants to organize their own leisure time.

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Promoting group play and recreation activities, enabling groups of people with DS to experience leisure activities offered to the public at large.

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Training volunteers and students in leisure activities and providing social preparation of people with disabilities.

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Assisting and guiding families and their family members with DS on matters concerning social integration.

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Guiding, advising and collaborating with institutions and/or professionals who work with people with DS.

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Identifying the needs of people with disabilities so as to ensure their social integration.

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Organizing courses and activities to promote independent living.

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What is intended is to give training to people with disabilities, to provide a realistic experience of how to function autonomously in social and everyday life. The PAS service works closely with the other adult programmes (for housing and job placement) ensuring that clients can interact smoothly with all FCSD services and encounter the same philosophy and approach

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everywhere, so that they can mature to become adults and integrate fully within society. The PAS is cross-sectional, involving all FCSD services.

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In addition to its professional staff, the PAS service also has the assistance of students and volunteers on a university practicum course.

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FCSD

COL·LABORA, JOB INTEGRATION SERVICE

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Entering the job market means fully entering the world of adults. This is a difficult process for anyone, but even more so for young people with learning difficulties. For them, as for everyone else, work is a human activity undertaken to address personal, economic and social needs.

This new type of relationship is basically co-operation-oriented. Cooperation implies thinking and acting in collective terms, as a group member, and it also involves adopting a new role. The workplace may very well be the place where the individual with learning difficulties first abandons a passive role as a service recipient ("I am taught and cared for by others") and takes on an agent role ("I am producing something"). The result of this change of situation becomes apparent and leads to important changes not only in activities or behaviour (learning capacity, change of relationships, methodology, specific vocabulary, habits, etc.) but also in mental attitudes (basically self-esteem). These changes in turn trigger changes in attitude and behaviour which reveal themselves inside and outside the work environment. Experience in the field of job integration has shown that many mentally handicapped people may find jobs in normal enterprises. But success in this process hinges on different issues: prior training, individual skills and abilities, learning capacity, personal habits, and the capacity to adapt to a new environment. It is a slow process, which on the one hand requires a solid structure to ensure appropriate training and

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Work also means coming into contact with a group of people we are not accustomed to, heterogeneous people with whom we establish relationships and ways of communicating completely different from everyday life.

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growth to maturity and, on the other hand, a flexible structure which should adapt readily to a wide range of individual capacities.

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Based on this perspective, and given that FCSD programs and services are geared to training and advising people with disabilities into the mainstream, the Col·labora Job Integration Service, was set up in 1995. Col·labora is now a service and it is sponsored by the Catalan Department of Labour. The ultimate goal of this programme is to ensure successful workplace integration of people with disabilities in mainstream enterprises. The chart below illustrates how the programme functions:

NATURALLY SUPPORTED EMPLOYMENT PROGRAMME COL.LABORA

Advice and Guidance Service

Training Module

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Prevocational Training

Job training Practical work Integration

- Knowledge of oneself - Training - Choice making - Personal image - Autonomy - Work and the world of work

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The process of job integration consists of two key stages: ●

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first, training takes place in a normal productive environment, allowing candidates to become familiar with technologies and work organization systems that would be impossible to reproduce in a school or a job-training centre. Second, candidates obtain work contracts. This in turn may demonstrate to employers that people with disabilities are a real work force.

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When a candidate applies for the programme Col·labora, a number of steps are taken: ● ● ● ● ● ● ●

Interview with the family to explain the content of the programme. Interview with the candidate. Assessment of the candidate's skills and abilities. Job training course and job search activities. Search for employers and definition of targets. On-site training through worksite experience. Follow-up and assessment of work done during on-site training by programme staff.

The moment a person with disability begins to form part of a normal working situation, he or she acquires a new social role (the role of a worker). People with disabilities who behave childishly and immaturely in environments that create dependence and overprotection behave quite differently when they are placed in an environment with role-based expectations. This concept changes the professional role of those who tend to their needs. If the aim is for people with disabilities to take on social roles, professionals are no longer there to give assistance, but to

Fundació Catalana Síndrome de Down

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

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mediate in a process that enables distancing, a requisite for adulthood. Therefore it is no longer a matter of providing care, but of mediating in a process which will enable candidates to have the necessary space for adult life. Thus, a mediating methodology emphasizes the importance of natural support, giving advice, guidance and other kinds of information to the candidate's fellow workers and immediate supervisors, who provide onthe-job training, rather than to professionals not belonging to the workplace, such as teachers, employment trainers, etc.).

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FCSD staff acting as mediators will basically operate in the worker's immediate surrounding and discuss the following: ●

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Technical working conditions that may influence the worker's efficiency to a significant degree. Personal relationships with fellow workers. Professionals may take preventive action, forestalling potential problems, or in case of conflict, they may advise fellow workers on the best course of action and provide guidance for the worker to cope with the problem.

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The mediator works from an objective, logical position that places positive solutions within reach and thus establishes a pattern of cooperation so that the example set by fellow workers becomes valid training for the disabled individual.

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

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“I‘M GOING HOME”, INDEPENDENT LIVING SUPPORT SERVICE

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

Now that many of our young people have attended mainstream schools, are employed in mainstream workplaces and enjoy social integration, their parents and relatives do not wish them to be confined within group homes of any sort, but would rather have them enjoy a life that is closer to their own ideal choice. This does not really constitute a new “model” – rather than a housing model or a housing option, this new approach is about respecting every individual’s wishes, about pursuing a way of life that tries to fulfill those wishes with the necessary support, about making different lifestyles possible. This new approach is a valid one for any person with a disability, for anyone who wants to pursue the “dream” of living in a home of their own.

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After centuries of confinement to institutions, group homes of varying sizes and degrees of comfort were set up, usually in the outskirts of towns and cities. Then came sheltered apartments: functional housing with a small number of residents who all share some of the housework. Developed as a result of the drive for more autonomy for individuals with disabilities, the latter are meant to be “like” a real home. Some of them come pretty close, but they are not the real thing. Because of their structure, there is considerable external oversight which in no way respects individual independence. Often, residents do not even have a say in basic choices affecting their lives decisions that most people take for granted, such as where they want to live and with whom.

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A person’s home is not just a place, a bit of space. Home is like a nest; it is where we feel safe and at ease; the place we have chosen and decorated ourselves; above all, a place where all rules or restrictions are self-imposed. We each have control over our own space, our own lives; we decide who may enter or leave our home and what may happen inside it. Home is, perhaps, the place where we feel most at ease, where we have the things that we want or like, and the people we love. This is a basic necessity for everybody, including persons with mental disabilities». With all this in mind, FCSD set up its Programme for Independent Living to offer individuals with disabilities the chance to live “in a home of their own”, including any support or assistance necessary to ensure safety and peace of mind. The Programme is therefore person-centered from the start; the whole process is driven by the client.

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Traditional residential services, including many programmes in this country, are designed to provide support and housing as a package; when the support provided turns out to be inappropriate, clients may be deprived of their home, as well. FCSD therefore believes that housing should not be operated by the same body that provides the support; only if the person with a disability has direct ownership or rental can he or she be sure not to have to move against his or her will. This is also the only way to create a sense of “ownership” through having to pay for household expenses, decorate the rooms, etc. This was a ground-breaking programme in Catalonia. It’s innovative, pioneering quality is highlighted by the fact that the individual with a disability is the main actor in the whole process. At the same time, it relies on the proven experience gained in similar programmes in the US (“Home of your own”, originally launched by the University of New Hampshire and now catering for over 1500 persons in a number of states) or the UK (the Paradigm scheme), not to mention extensive literature on the subject. In 2001, the programme was launched experimentally. It has now become a full-fledged FCSD Service supported by the Catalan Department of Social Welfare, which passed Order 6/2002 regulating and acknowledging this form of support as a way to provide home and lifestyle choice for individuals with disabilities. This legal text also lists all current legislation concerning individuals with disabilities (LISMI and Act 21/87) and the regulation of social services in Catalonia (the Catalan Act

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regulating the governance and registration of Social Services) and is a further step along the road to full social integration. The Service is intended for persons with mental disabilities; specifically, in keeping with the new AAMR definition of mental retardation, it is for adult persons (over 18) with “significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills.”

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Throughout the planning and followup process, the programme is underpinned and inspired by its pursuit of quality of life as defined by the individuals themselves, which is ultimately the same as quality of life for any ordinary citizen. This informs the principles underlying intervention and determines which indicators will be used during the followup process. Quality of life is a multidimensional concept that may be defined by consensus among those who are close to the person who is the recipient of the service; it entails both meeting basic needs and affording the same opportunities available to any other person setting life goals or objectives. Mental disability (equal to or greater than 33%) has to be rated officially by a public Assistance Center for People with Disabilities before the person can use the service. Additionally, the individual him or herself must make the request and this must have the support and approval of the person’s family and/or legal representatives.

The third and last requirement is for the client to agree to set up a Circle of Trust, a number of key persons who will organize around him or her to provide a web of relationships and whatever support the circle agrees is necessary. The Service acts as facilitator and matches needs to coverage of those needs to ensure the utmost safety and welfare of the client. The Circle will never decide or choose in place of the recipient, who will have nominated and accepted each Circle member. The Circle meets at varying intervals in the person’s place of residence.

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The client must also be able to have access to a home of his or her own, whether owned or rented in their own name. Legal title to the premises means that control of the home will not be lost. In order to avoid discrimination, no specific socioeconomic indicators have been set as access criteria; the point is that the individual and his or her legal representatives should be able to manage the expense of keeping up their home. The Service can advise prospective applicants on this matter.

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The criteria used to assess the person’s functioning and the influence of disability on the overall set of abilities and skills displayed will not provide a single or exclusionary profile of the client. Steps must always be taken to ensure that needed support is provided, wishes fulfilled and personal expectations met in full comfort and safety under the Personal Care Plan developed. Considerable importance is attached to personal and contextual attitudes linked to self-awareness of personal status, requests for and acceptance of support tailored to specific individual needs, and respect and support for the person’s own expressed or consensus-inferred decision. ●

Methodology

The work of planning home support and developing action plans is carried out by the team in five main stages: 1.- Client and family members are interviewed to explain how the Service operates and record every family member’s agreement to carry through the programme. 2.- Client is interviewed alone or with one trusted companion to initiate information gathering, emphasising the following points: ● ● ● ● ●

Preferences. Problems. Things they find difficult. How they learn. What kind of help they receive.

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This may entail a number of interviews at different key places (place of work, current neighbourhood, neighbours’ homes, etc.). Depending on the person’s communication skills, interviews may require the presence of an interpreter, a family member, or a caregiver who knows them well. 3.- Preparing a place. Assessing socio-economic conditions (to decide on purchase or rental and identify available resources). Designing the new home. While the Service may provide assistance in finding a suitable place, it cannot own the place itself.

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4.- Designing support. All necessary meetings are held in the person’s place of residence, and all planning and decision-making is person-centered. 5.- Moving in. The plans are set in motion, the Action Plan is confirmed and the Follow-Up stage is launched after checking on point such as: ● ● ● ● ● ●

The new place (are adaptations needed?). Furniture (does anything need to be changed or adapted?). Where things go. Filling the pantry (food). Home decor. Rules for survival, both in terms of safety (use of gas, electricity, water, locking doors and windows, etc.) and in terms of hygiene (personal care, food handling, clothes care, etc.).

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6.- Adapting to the new situation and establishment of regular support based on the person’s new routines and wishes. This launches lifelong follow-up. A person’s needs will fluctuate over time, waxing and waning back and forth; support must therefore be flexible and resourceful. The group has a key role in regularly analysing and reviewing the current situation. Support is structured following a number of basic principles on the basis of a plan that is tailored to the person’s situation and which should not be too technology-oriented.

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Onset: This begins with the person’s application to join the programme. Includes whole-person assessment, autobiographical data collection to identify personal history, identifying personal goals and preparing for transition. This stage involves a number of interviews with the client, visits and interviews with persons who have a key role in his or her life, and the forming of the Circle of Trust.

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Transition stage: Comprises original home location and preparation decisions and support, getting to know the new setting (neighbourhood), local resources, and all work done prior to moving in.

Fundació Catalana Síndrome de Down

Specific planning, implementation and follow-up stages are thus defined for the support element.

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Intensive support stage: As soon as the person moves into the new home, intensive support is allocated to ensure maximum safety and backup and help design an appropriate Personal Assistance Plan depending on how he or she is adapting and functioning in the new environment.

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Regular support stage: After initial adaptation and once new habits and routines are in place, support is gradually phased out down to the level set forth in the Personal Assistance Plan.

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The stages in the process do not have a predefined duration, but depend on the person’s circumstances and requirements. Critical stages must be planned for: namely, any foreseeable circumstance following the onset of the regular support stage that may change the person’s way of life and require intensive work to redesign the Personal Assistance Plan.

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In addition to the Service’s formal provisions and the hazard prevention mechanisms agreed for each person, an agreement has been entered with the Red Cross remote assistance service and the Provincial Council of Barcelona to ensure round-the-clock emergency assistance tailored to our clients’ needs and situations.

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DOWN MEDICAL CENTRE

Ever since John Langdon Down first described the syndrome that was to bear his name, in 1866, there has been remarkable interest in associated medical problems. In the second half of the twentieth century, the cause of the syndrome was discovered – namely, the extra chromosome 21. Molecular cytogenetic studies of chromosome 21 DNA have been under way since the 1990s.

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The FCSD has always paid particular attention to the medical aspects of DS, since good physical health is necessary to begin a proper educational intervention. For this reason, the Down Medical Centre (DMC) was created in 1987. Although the first Service founded by the FCSD was the Centre for Child Development and Early Intervention, there soon emerged a real need for a Health Programme to provide information and ensure full medical care, at a time when medical information about this syndrome was very little. This Centre was the first in Spain to give specific medical care to people with DS. It started out with few physicians and has undergone many changes, especially in terms of services offered to the public and in the number of patients. Currently, it is considered a major health care centre for people with DS, both on account of the number of services offered as for their quality. Its main function is to watch over the state of health of people with DS, for preventive purposes. It offers treatment in 18 medical specialities. Well over 1600* persons have been treated, most of them from Catalonia. There are easily over 2,000 appointments a year.

(*2003 data)

Fundació Catalana Síndrome de Down

DS cannot be regarded as an illness, though it is true that people with DS have a greater tendency to suffer from more or less serious health problems, especially if not diagnosed or treated at an early stage. They are known to have a higher rate of congenital malformations, especially heart malformations; later in life, there is also a higher rate of metabolic diseases and other conditions. The physical traits and psychological factors most often associated with DS have also aroused great scientific interest.

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The DMC provides specialized medical care in the following areas:

Fundació Catalana Síndrome de Down

Cardiology Pediatric Dentistry Ophthalmology Oral Health adult Ear, Nose and Throat Internal Medicine Psychiatry Oral health pediatric

Neurophysiology Endocrinology Dietetics and Nutrition Orthodontics Gynaecology Clinical Psychology Adult Neurology

Dermatology Paediatric Adult Ophthalmology Genetics Paediatrics Paediatric Neurology Orthopaedics and Traumatology

In addition to providing health care, the DMC is involved in disseminating medical information. In 1986 it launched the still-ongoing publication Síndrome de Down. Articles i Resums Científics, now expanded and reformatted under the new masthead SD.Revista Mèdica Internacional sobre la Síndrome de Down/DS. International Medical Review on Down Syndrome, to present and update current knowledge of medical aspects of DS and keep the reader up to date on the most promising developments in basic science (molecular biology and genetics) and everyday medical practice. It also addresses psychological and educational aspects of practical interest because they tie in with medical concerns. Clinical research is also encouraged by the DMC, which has been directly and indirectly involved in a number of research projects, especially since the 1993 TV3 Telethon. Moreover, the DMC serves a teaching purpose, targeting both health care professionals and parents or other

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individuals with an interest in the subject. Its research mission has led it to link up with hospitals, universities and other institutions. From the outset, the DMC was set up for maximum effectiveness. Pioneering medical centres caring for people with DS at the time of its foundation were reviewed, and the original medical staff came to a consensus and approved an annual checkup schedule involving different specialists and varying with patient age. This was the Health Programme (PS) first published in Spain within the Butlletí de la Societat Catalana de Pediatria (1987, 47:33-41), which now covers patients from birth or DS diagnosis through life.

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FCSD HEALTH PROGRAMME FOR CHILDREN AND ADULTS WITH DOWN SYNDROME AND NO OTHER ASSOCIATED CONDITIONS The programme is designed according to universally accepted guidelines for its stated purposes. It is regularly updated in the light of relevant scientific developments and its own accrued experience, currently numbering over 1650 cases since 1987. Implementation of this schedule together with the early stimulation programme ensures that every participant with DS will reach his or her highest potential. The health programme provides basic prevention on a separate basis for children and adults, and is fleshed out with whatever additional monitoring is required if any other condition is identified.

I – HEALTH PROGRAMME FOR CHILDREN AND TEENAGERS

1) BIRTH TO THREE MONTHS a) Geneticist ● DS diagnosis. Chromosome study using karyotyping or fluorescence in situ hybridization (FISH) to determine whether it is a regular, mosaic or translocation trisomy. Family assessment and counselling if required.

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This comprises all the routine checkups that must be made by specialists from the first pediatric assessment at the DMC to adulthood (18 years).

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b) Paediatrician General examination of the newborn, with a special emphasis on: ● Screening for congenital cataracts. ● Screening for potential congenital malformations, both external and internal. ● Hearing examination. ● Thorough checking for metabolic disorders, particularly hypothyroidism. ● Screening for congenital hip dislocation. c) Cardiologist Forty to fifty percent of DS babies have congenital heart disorders, so a full range of ECGs and other tests are required. The need for medical treatment or surgery is assessed.

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d) Paediatric Neurology Examination of muscle tone and neurological function. ● Co-ordinating action with the Early Intervention Programme and other professionals. ●

Other tests: Karyotyping -FISH-. ● Metabolic screening. ● Cardiac assessment. ● Blood work-up. ● Abdominal assessment. ● Others as required. ●

Fundació Catalana Síndrome de Down

2) 3-12 MONTHS a) Paediatrician Examination of the baby, with an emphasis on the following: ● Assessment of general condition and nutritional status. ● Genitals; check for undescended testes. ● Initiation and follow-up of the adapted immunization schedule. ● Monitoring of immune status due to a greater tendency to develop infections, particularly respiratory infections. ● Assessment of skin moisture and flexibility. b) Paediatric ophthalmologist Diagnosis of eye alterations if previously undetected.

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c) Ear, Nose and Throat specialist General check-up. Children with DS seem to suffer more often from middle ear infections and wax plugs.

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d) Paediatric Neurology ● Assessment of psychomotor development. Other tests: Haematological analyses ● Anti-HB antibodies (post vaccine) ● Check of thyroid function ●

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3) 1-3 YEARS a) Paediatrician Annual assessment of: ● Growth, weight and head circumference according to the specific tables for DS published by the Fundació Catalana Síndrome de Down. ● Health and hygiene habits. ● Compliance with immunization schedule. ● Thyroid and haematological functions (due to potential hypothyroidism and a higher likelihood of certain forms of leukaemia). ● Compliance with immunization schedule (immunoglobulins, etc) b) Paediatric ophthalmologist Annual check-up to screen for errors of refraction (nearsightedness or farsightedness, etc.).

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c) Ear, Nose and Throat specialist Yearly check-up looking for disorders, using complementary tests such as brainstem evoked response audiometry or tympa-nometry.).

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d) Paediatric Neurologist Assessment of psychomotor development.

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e) Orthopaedist Control of walking ability and use of both feet. ● Screening for potential joint dislocations. f) Dentist Teeth: routine prophylaxis.

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Other tests: Haematological, biochemical, thyroid, and immunological tests, biennial. ● Assessment of development. ● IgA anti-tissue transglutaminase or anti-endomysium (after 18-24 months). ●

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4) 3-10 YEARS

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a) Paediatrician Annual assessment of: ● Growth, weight, and skull circumference, including checking for obesity. ● Health and hygiene habits. ● Compliance with immunization schedule. ● Thyroid function, biochemistry, and blood work-up. b) Paediatric ophthalmologist Annual or biennial eyesight check-up.

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c) Ear, Nose and Throat specialist Yearly or biennial hearing check-up, including associated structures.

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d) Paediatric Neurologist Assessment of neurological development.

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e) Neurophysiologist Assessment of sleep disorders.

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f) Orthopaedist Assessment for atlantoaxial subluxation. ● Check of walking ability. ●

g) Dentist Teeth: routine prophylaxis. ● Orthodontics: as required. ●

h) Psychologist Monitoring of childhood development.

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Other tests: Cervical spine study. ● Haematological, thyroid and immunological clinical tests. Annual or biennial. ● IgA anti-endomysium or IgA anti-tissue transglutaminase test (if previously not studied or repetition at 6-7 years). ● Assessment of development. ● Hearing examination. ● Sleeping Polysomnography. ●

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5) 11-17 YEARS a) Paediatrician Annual assessment of: ● Health and hygiene habits. ● Thyroid function. ● Routine check-ups for children of the same age. ● Compliance with immunization schedule. ● Weight and growth

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b) Paediatric ophthalmologist Eyesight check-up every two years.

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c) Ear, Nose and Throat specialist General hearing check-up every two years.

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d) Paediatric Neurologist (<14years old) Neurologist (>15 years old) Assessment of neurological development.

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e) Orthopaedist Regular checks of atlanto-axial joint and others.

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f) Gynaecologist Assessment of sexual development.

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g) Psychologist Regular check through puberty and adolescence.

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Other tests: Cervical spine study. ● Haematological and thyroid clinical tests annual or biennial. ● Assessment of development. ● Hearing examination.

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II – HEALTH PROGRAMME FOR ADULTS Comprises routine check-ups after 18 years old.

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a) Internist Annual assessment, especially of the following: ● Weight (obesity). ● Health and hygiene habits. ● Thyroid function. ● Development and sleep issues. ● Immunization status (Td, influenza, pneumococcal). b) Psychologist Yearly examination.

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c) Neurologist Neurological assessment: every 5 years up to age 40, then annually.

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d) Orthopaedist Regular general check-ups.

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e) Other annual check-ups: Dentist ● Gynaecologist ●

f) Other 2-yearly check-ups: Ophthalmologist ● Endocrinologist ●

g) Other 5-yearly check-ups: Cardiologist

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Other tests: Haematological, thyroid and immunological clinical tests, as required and evolution.

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III- FREQUENTLY-NEEDED MEDICAL SPECIALTIES NOT INCLUDED IN THE PREVENTIVE MEDICINE CHECKLIST: ● ● ● ● ● ● ●

Dietetics and Nutrition Endocrinology Dermatology Gastroenterology Psychiatry Orthodontics Haematology

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

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Gene mapping of various regions of chromosome 21. Various genes in the 21q11.2 region have been identified, including DSCR1 (the first specific gene in this region leading to DS traits), MNBH, c21LRP, WRB, SH3BGR and others. In addition, genes from other regions which may be directly or indirectly linked with DS have been identified, as well as some of the proteins they express.

(* 2003 data)

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With the remainder of the funds obtained from the La Marató de TV3 telethon, the FCSD sponsored the following research projects:

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Potential indirect diagnosing of chromosome error in male and female germ cells has also been studied. Sperm testing using FISH and detection of the extra chromosome in the 21 pair have been done for parents of children with and without DS. It has been shown that some parents of children with DS tend to present errors in the sperm cells. This study may allow diagnosis of chromosome alterations in sperm prior to in vitro fertilization.

The short term useful projects are those ones; also there are others that should also be mentioned: ●

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The database was also used for a comprehensive study of the most frequent disorders affecting adults with DS; the case histories of 200 people kept at the CMD were used as a sample. Through this study, prevalence rates have been identified for a number of health problems that were not previously apparent. A comparative study was done for over 270 children and adults with DS using new technologies such as fluorescence in situ hybridization (FISH), molecular studies (DNA), PCR and CGH. The frequency of appearance of certain variations in the structure of chromosome 21 and of other specific cases of DS has thus been established. Surprisingly, some cases do not present trisomy but do present DS features. Phenotype/genotype correlation was also studied. Microsatellites were used to study 151 cases of DS. This made it possible to determine the paternal or maternal origin of the extra chromosome in the 21 pair, and at which phase of cell division the error occurred. Transgenic animals with chromosome alterations in the region homologous to where the extra chromosome appears in DS were bred and studied. There was a study of lipoprotein E4, thought to foster trisomies. Studies were also made of genes and proteins, such as GAPDH, aBchrystalline, Bcl-2 and Bcl-xL, which play an active role in cell division and cell death. The spatial distribution of chromosomes within the cell nucleus was studied, along with its active role in the mechanisms of chromosome non-separation (nondisjunction) and its parental origin. The cause of nondisjunction of chromosome 21 was determined using new technologies in a high-prevalence population; phase of onset was also determined.

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More recently, research collaboration agreements have been reached with a number of university and foundations. ●

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The effects of Donepezil as a first-line treatment for individuals with DS and Alzheimer's disease are being investigated. This drug has been shown to have beneficial effects for some dementia cases. A study of adult DS brain metabolism assessment using PET (Positron Emission Tomography) was performed and the presence of areas with lowered metabolism was demonstrated. Study and assessment of visual capacity and quality in adults with DS. A study of celiac disease in children with DS, a frequent co-occurrence in which the body does not tolerate the gluten found in certain types of cereal. A study of upper GI tract motility, especially of the oesophagus, in adults with DS. An assessment of sleep disorders, a frequent occurrence in children with DS.

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Needless to say, the Clinical Psychology service operates in close collaboration with the rest of FCSD services. If a child or young person taking part in any FCSD programmes (PAS, Job Integration, Mainstream School Support Service, etc) shows any signs of disorders which call for diagnosis and treatment, they are referred to the Clinical Psychology Service for care.

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Besides the services mentioned above, the Down Medical Centre offers parents of children with DS every manner of advice and support, so that they may make the necessary decisions for the sake of their child's physical and mental health. Therefore, one of the DMC's special services is Clinical Psychology. This service includes treatment for people with DS and their families.There are many reasons why parents come for an interview, and these vary according to age and personal or family circumstances. Some parents seek advice on particular issues of their child's development (school integration, trouble relating to others, when and how they ought to tell their child about the disability, age of puberty and adolescence, sexuality, wish for parenthood, etc.). Other cases may call for a psychological diagnosis, in order to assess the need for psychotherapy, often for personality or behavioural disorders requiring treatment. Finally, siblings, parents or grandparents may require family counselling and guidance in some cases.

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DMC professional staff also work closely with each other. If a specialist deems the intervention of another specialist necessary, he or she will immediately contact this specialist either personally or in writing, in order to care for the physical and psychological well-being of the person.

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Finally, the DMC promotes general information for parents and teachers alike. This is done by organizing lectures regularly on various aspects of DS. Research is another major concern, which is promoted by awarding prizes and organizing scientific sessions.

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TUITION AND TRAINING

One of the aims of FCSD is to serve as a reference centre for professionals, parents and family members. Therefore, acting as a Resource Centre, FCSD runs a Tuition and Training Service open to families, professionals and people interested in DS issues. The team is made up mostly of professionals working in the FCSD and professionals from other institutions specialized in a specific issue so as to ensure the best quality in any activity organized concerning DS.

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PROFESSIONAL TRAINING ACTIVITIES Courses and seminars are organized and taught every year on a regular basis.

Case Discussion Seminar - Guidance and Counselling. This seminar uses case studies contributed by course participants to assess the variety of psychological and educational techniques that may be used to address problems in different stages of schooling. This course is open to teachers, educationalists, psychologists and professionals working in ordinary schools or special education schools. Each participant presents a case, which is then discussed and analysed from a theoretical and practical perspective. References and material are provided for each case as required. Seminar on catering for diversity in secondary school (grades 7 to 10). Secondary-school professionals discuss their experience regarding

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Open Classroom. This is a basic training course, intended to bring together all professionals involved in the school integration process. The course aims to give information and training on the needs that a child with a disability may have in a regular school.

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children with special educational needs (NEE), the organization of a curricular adaptation unit (UAC), integration, and so forth.

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Seminar on language in children with DS. Ways of fostering language development in school are discussed. The theory of language development is used as a framework for discussion and analysis of language in the child with DS in order to come up with resources and strategies which may be useful for everyday school life. Since 2002, this seminar is also being taught as an open learning course hosted by the Universitat Oberta de Catalunya (UOC). International Conferences. FCSD regularly organizes conferences on DS. They are basically a means of disseminating information on DSrelated matters. Up until 1997, all conferences dealt with both medical and psychoeducational issues. Due to the enormous interest of these two fields, it was decided to separate them by alternating the contents; separate conferences are now held on alternating years since 1997. Thus, the International Congress on Chromosome 21 and Medical Research on DS was held in 1997. The Congress allowed scientists and DS specialists to exchange information and discuss the latest advances in DS. Participants included a wide spectrum of experts, from laboratory researchers to specialized physicians.

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In addition to the regular courses and conferences outlined above, other teaching activities are organized by the FCSD as needs or interest arise.

PUBLICATIONS SD. Revista Mèdica Internacional sobre la Síndrome de Down. DS. International Medical Review on Down Syndrome. A pioneering publication intended for pediatricians, other physicians and other interested individuals. It is regularly sent to all pediatricians in Spain and to other physicians, professionals or parents on request. Total

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Its chief interest lies in the fact that, as well as being the mouthpiece of the FCSD Down Medical Center and providing information on its activities and methods, it routinely includes two original medical papers (one research study and one case review) along with one article covering issues of psychology, education, and existing models for mainstreamed life choices. The underlying idea is to include both organic and psychological aspects to present the person as a single, whole entity. PRACTICUM TRAININGS Practicum agreements are in place with the following universities: ●

University of Barcelona. Educational Science Division of the Schools

(*2003 figures)

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circulation is 16,000 copies, 4,000 in Catalan and 12,000 in Spanish (including individual subscribers and Down Syndrome-related associations in Latin America). It is available online from 2002 in Catalan, Spanish and English and indexed in EMBASE/Excerpta Medica and Índice Médico Español (IME).

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of Education and Psychology. School of Library Science and Documentation and School of Psychology. ●

Autonomous University of Barcelona. School of Educational Science. Social Educator Diploma. School of Education and School of Psychology.

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Universitat Ramon Llull. Blanquerna School of Psychology, Education Science and Sports. Fundació Pere Tarrés (operator of the University Schools of Social Work and Social Education of Universitat Ramon Llull). Social Education Diploma.

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Universitat Oberta de Catalunya (UOC). Psychology, Psychology & Education, and Education Science.

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Guidance and support are provided for research papers (dissertations, projects, etc.) produced by schoolteachers, university lecturers and students in Catalonia, in Spain, or abroad. WEBSITE The FCSD has a website that is highly dynamic and open to user participation. Users usually ask about medical and psycho-educational topics and come from all over Spain and Latin America.

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FAMILY-ORIENTED ACTIVITIES Parent encounter group: For parents of people with DS, facilitated by two therapists and designed to foster sharing and thinking around the personal experience of having a child with a disability. Seminars for parents:, A variety of theoretical content is taught and opinions are exchanged among parents of people with DS. Sibling group: For siblings of children with DS to share their personal experiences and perspectives.

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LECTURES The FCSD regularly holds lectures and talks for professionals and family members. At least three lectures are held during the school-year, two of them health-care-oriented and one focusing more on psychoeducational aspects.

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Lectures and talks on issues related to DS or disabilities at large are also given year-round at schools, institutions, workplaces, etc., on request

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FCSD

EXTERNAL RELATIONS AND NEW PROJECTS SERVICE

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The Service for External Relations and New Projects was created in 1998 to develop FCSD commercial and marketing activities; to co-o rdinate, structure and launch awareness campaigns; to facilitate cooperation with other institutions; and periodically to evaluate the need for new projects. This Service operates jointly with General Management and works in close co-ordination with professionals in other FCSD services. The External Relations and New Projects Service manages the following activities: 1.- Awareness campaigns: regarding the right to normalization and full

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Internet vehicles (website, banner ads).

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TV (spots and special programmes).

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Radio (advertisements and interviews).

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Press (advertisements and articles).

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Public and private official ceremonies (promoting the services of the FCSD). This new marketing policy serves a twofold purpose. Firstly, from an

informative and practical point of view, it is aimed at making the public more aware of the aims and philosophy behind the FCSD. Secondly, in

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social integration of people with DS and other disabilities, using:

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terms of commitment, it is aimed at arousing solidarity for our cause, collecting funds for financing new projects, and obtaining volunteers, assistants, and students willing to collaborate in some of the FCSD's activities.

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

Joint promotion of campaigns to increase awareness and collect funds.

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Organization of training courses for families, professionals or institutions, according to demand. Institutions may be in Spain or in

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a foreign country. ●

Promotion and fund-raising for research projects which may be of interest

to

physicians,

geneticians,

educationalists

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psychologists. Demand has increased considerably since the 1993 TV3 telethon La Marató de TV3. ●

Co-publishing of the most recent studies in the field and methodological aspects considered most relevant to our aims.

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4.- New Projects: the main aim of the service in this regard is to run preliminary studies and ultimately design new services, research projects and dissemination schemes in order to strengthen the capabilities and technical knowledge of FCSD. New Projects operates in close coordination with the Programme Coordinator. 73

Its functions are: ● ●

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

needs of the families or professionals. Through joint studies between the Programme Co-ordinator and the corresponding service, FCSD investigates and assesses the need and the practicability of starting a new project by following a specified procedure: needs study, feasibility

5.- Information Service: The prestige earned by FCSD over several years since its creation has led it in recent years to become an important point of reference in Latin American countries for many newly created institutions, for parents who have just had a baby with DS, or simply parents seeking specific advice. To meet their requirements, the International Relations service was created within this department to

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study, economic study, and search for a sponsor.

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provide information to anyone in need of it. The web site has brought on a spate of new inquiries. Much of this demand comes from Latin America. Information seekers range from people wishing to create a Centre or an Association for 74

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

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our common cause is deeply acknowledged.

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BEGOÑA RAVENTÓS DATA CENTRE

The Begoña Raventós Data Centre (BRDC) specializes in all forms of disability. It holds an updated stock of 4,909 books, 5,262 catalogued and updated magazine articles, 284 audio tapes, 956 videotapes, 97 subscriptions to specialized journals, and 4,280 articles from other catalogued sources (2003 data). For its size and wealth of information on DS, this centre is unique in Spain. It began operating in 1985 as a donation made by Mr. Jesús Raventós of the Begoña Raventós Information Service book collection.

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Since the Data Centre complements the materials available in university libraries, university lecturers regularly refer their students to the centre. For this reason, it receives inquiries from people studying to become teachers, nurses, psychologists, educationalists, speech therapists, physiotherapists, or social workers, as well as professionals and school psychologists team preparing lifelong training sessions or seeking disability-related information on issues pertaining to school, employment, psychology, medicine, law, personal development, leisure, social services and assistance, etc. Objectives ● To provide specialized information in order to support research and the daily work of professionals, parents, and students in the field of disabilities.

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

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To contribute to the initial and continued education of students and professionals. To support FCSD activities and courses: the Master's Degree in Early Intervention, the Open Classroom, conferences and seminars.

1. The Begoña Raventós Data Centre collection As mentioned earlier, the centre holds over 5,000 monographs specializing in the issue of disabilities. The Periodicals section stocks over 250 different journals and bulletins, 100 of them currently subscribed to. Besides, many relevant articles from journals are recorded and catalogued; there are over 3,500 articles currently available from the centre 's database. A general press section collects articles printed in Spanish daily newspapers since the late 1960s. Also, more than 5,000 pamphlets including conference abstracts, offprints, etc. are recorded and catalogued. The video library stocks over 300 different videotapes which may be viewed in the library or borrowed for use as a visual aids for talks, debates, special training or other activities.

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There is also a collection of audiotapes which record the conferences and seminars organized by FCSD. Other specialized items include posters, charts and the programmes of seminars and conferences. The information contained in these items has been collected over more than 20 years. The Centre obtains most of its material through purchase, exchange or donations. The Centre's relationship with international institutes interested in the issue of disability enables it to keep abreast of the latest material published in this field, as several publications are not distributed through the normal channels and are produced in small volume.

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2. Services for the users The BRDC is open to the public: visitors have free access to the library and may also use the photocopier, borrow tapes, research material, find bulletins listing abstracts or recent acquisitions and search the online catalogue over the Internet. 77

3. On-site browsing The BRDC is open to anyone interested in disability. Material is available for direct browsing. Videotapes can be watched, audio tapes heard, and there is even an online service for Internet-based catalogue searches. The catalogue is automated for easy searching. All material listed in the catalogue are available in the centre. Searches cover all printed material: books, articles from reviews and bulletins. Documents and information can be located either through standard bibliographic reference searches (by author, title, publisher) or by using descriptors, keyword searches or full-text searches. Staff will readily help users to ensure a prompt and successful search. 4. Internet Catalogue Searches

This service provides round-the-clock access to the Data Centre wherever the user is located. It also enables users to request documents using the bibliographic search service, as long as current legislation concerning use and restrictions is observed. 5. Photocopying A self-service photocopier is available to users who require copies of parts of documents. Current legislation concerning the use and

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The Centre's automated catalogue can be searched at www.fcsd.org. Documents may be searched by title, author, other responsible parties, subject descriptors, language, etc. Free-text searches for any word in the catalogue are also possible.

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restrictions applying to this service must be observed. 6. Bibliographic search service

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This service makes printed documents available without having to come to the library. Document photocopies may simply be requested via letter, fax or e-mail. The request must be sent to the BRDC address, specifying title, author and number of pages. For journal articles, the name of the journal, issue number and year must be added. All photocopies are sent cash-on-delivery. 7. Audiovisual lending service The BRDC has a wide range of videotapes dealing with various forms of disability (physical, mental and sensory). This material is highly suitable for use in talks, lectures and seminars or for initial contact with disabled people, to get used to how they express themselves and how they behave. It also enables professionals to learn about educational experiences and tasks performed by other professionals and institutions. Tapes come from various countries and may contain films, debates, documentaries, general information, workshops, etc. Videotapes may be viewed in the library or borrowed for a fortnight. The lending service is also available for people who live far away and cannot come to the Centre in person.

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8. Table of Contents Bulletin Service This bulletin photocopies the contents page of each of the reviews received in the library. It is published every two months and comprises all issues of journals received during this period. It is sent by regular post, except for the first issue, which is sent cash-on-delivery to pay for the yearly subscription fee.

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Photocopies of articles listed in the bulletin may be requested by letter, fax or e-mail stating the full title of the article, author, number of pages, journal name and issue number and year. This service is paid separately for every request sent to the BRDC. 9. New Books Bulletin Service 79

This bulletin lists all the new books coming into the library. It is published every three months and is sent to subscribers who pay a subscription fee. It contains the bibliographic references of all new books as well as their subject descriptors and summaries. 10. Activities with other institutions Acting as a documentation centre in association with Spain's Real Patronato de Prevención y de Atención a Personas con Minusvalía, the BRDC forwards the biannual publications catalogue of the Real Patronato to more than 200 disability-related organizations and institutions based in Catalonia. This catalogue may also be consulted at the centre.

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The BRDC also collaborates with the Escola Universitària Jordi Rubió i Balaguer de Biblioteconomia i Documentació (which trains librarians and archivists) by allowing third-year students to use the Data Centre as a site for guided work experience.

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ACKNOWLEDGEMENTS

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The FCSD wishes to express its deepest gratitude to all institutions, public and private, collaborating institutions, members, enterprises and private individuals for their support and financial aid, since without it our tasks and projects aimed at improving the quality of life of the disabled so that they attain full social integration at all levels, in school, employment and society, would not be possible. Every idea, every new project, every extension of a service, or of a proposal needs financial aid. The FCSD could not function without this support.

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Our heartfelt thanks to all.