MALLORCA - SPAIN. PROF. JUAN PERERA Ph.D. www.asnimo.com. Up until 1976 people with Down Syndrome were in what is today called “INCLUSION INTERNATIONAL”. A large Association that provided assistance for all kinds of people with disabilities.
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MALLORCA - SPAIN PROF. JUAN PERERA Ph.D
Up until 1976 people with Down Syndrome were in what is today called “INCLUSION INTERNATIONAL”. A large Association that provided assistance for all kinds of people with disabilities. In 1976 – following the example set by the USA and the UK – I proposed to a group of parents of children with DS the creation in Mallorca of a SPECIFIC ASSOCIATION for DS
WHY? - BECAUSE KNOWLEDGE ABOUT DOWN SYNDROME WAS IMPROVING (NAMELY THE IDENTITY AND CONSEQUENCES OF CHROMOSOME 21) IN “INCLUSION INTERNATIONAL” PARENTS WERE NOT FINDING A SOLUTION TO THEIR CHILDREN’S NEEDS SPECIALISATION IS A CHARACTERISTIC OF OUR TIMES
OVER THE LAST 34 YEARS WE WORKED IN 3 MAIN FIELDS • SCIENTIFIC • CARE • SUPPORT FOR THE ASSOCIATION MOVEMENT
1. SCIENTIFIC WE HAVE EFFECTIVELY CONTRIBUTED TOWARDS THE SCIENTIFIC STUDY OF THE IDENTITY OF THE EXTRA CHROMOSOME 21 WHICH IS THE CAUSE OF THIS DISABILITY, IN CLOSE COLLABORATION WITH THE UNIVERSITIES OF LIEGES (BELGIUM), PORTSMOUTH (UK), ARIZONA (USA) AND THE INSTITUTE FOR BASIC RESEARCH IN DEVELOPMENTAL DISABILITIES IN NEW YORK.
OVER RECENT YEARS WE HAVE ORGANISED, IN MALLORCA, SEVEN INTERNATIONAL SYMPOSIUMS ON DS AT WHICH EXPERTS FROM AROUND THE WORLD HAVE PRESENTED THEIR RESEARCH AND WHOSE RESULT HAS BEEN THE PUBLICATION OF EIGHT SCIENTIFIC BOOKS.
THIS SCIENTIFIC WORK HAS CONTRIBUTED TO THE ISOLATION AND KNOWLEDGE OF OWN SPECIFIC CHARACTERISTICS OF DS WHICH HAS ALLOWED US TO DESIGN METHODS AND PRACTICAL INSTRUMENTS TO BETTER CARE FOR THE HEALTH OF PEOPLE WITH DS AND TEACH THEM TO SPEAK, READ, WRITE AND DEVELOP THEIR INTELLIGENCE AND LIVE THEIR LIVES WITH AUTONOMY.
MAIN PUBLICATIONS • Perera, J. (1986). La población afectada por el síndrome de Down en Baleares: estudio longitudinal. Barcelona: Centro de Publicaciones de la Universidad de Barcelona. • Perera, J. (1990). Síndrome de Down: Programa de Acción Educativa. Madrid: CEPE • Perera, J. (Ed.) (1994). Síndrome de Down. Aspectos Específicos. Barcelona: Masson • Perera, J., Rondal, J.A. (1997). Cómo hacer hablar al niño con síndrome de Down y mejorar su lenguaje. Un programa de intervención psicolingüística. Madrid: CEPE • Rondal, J.A., Perera, J., Nadel, L., Comblain, A. (eds.) (1996). Down’s Syndrome. Psychological, psychobiological and socioeducational perspectives. London: Whurr Publishers. • Rondal, J.A., Perera, J., Nadel, L. (eds.) (2000). Down Syndrome. A review of current knowledge. London: Whurr Publishers. • Rondal, J.A., Perera, J. (eds.) (2006). Down Syndrome neurobehavioral specificity. Chichester: Wiley Currently in the process of publication: • Rondal, J. A., Perera, J. (eds.). Neurocognitive Rehabilitation of Down Syndrome. The Early Years. Cambridge University Press
In addition the ASNIMO technical team has carried out the translation and adaptation into Spanish of the educational modules edited by the Down Syndrome Educational Trust of Portsmouth (UK). • Volume I: “Living with Down Syndrome. An introduction for parents and teachers”. • Volume II: “Development of speech and language in pupils with Down Syndrome. Resources and activities for parents and teachers “ • Volume III: “Education, access to the curriculum, reading and writing in pupils with Down Syndrome” • Volume IV: “Development of numerical and motor skills in pupils with Down Syndrome and access to information technologies”
2. CARE For the last 34 years ASNIMO has catered for the needs of people with Down Syndrome in the Balearic Islands in all phases of their lives. The services it has provided are as follows:
1. Prenatal diagnosis and genetic counselling • 2. Early intervention • 3. Mobile support units for school integration • 4. Special education units • 5. Units for transition to adult life
6. Services and treatments (speech therapy, physiotherapy, psychomotor therapy, psychotherapy, etc.) • 7. Occupational centres • 8. Day centres
9. “S’Estel” school residence 10. Sa Lluna Home 11. “Sempre Verd” Special Employment Centre 12. Employment with support 13. Medical unit
14. Centre for resources and support for integration 15. Leisure and respite for families 16. School for parents 17. Independent Living Programmes 18. Care Foundation
3. SUPPORT FOR THE ASSOCIATIONS MOVEMENT ASNIMO has been a promoting and cofounding member of the Spanish Federation of Associations for DS (today Down España), of EDSA, of Down Syndrome International (DSI) and also of the UNAC (Federation of the Balearic Islands).
ASNIMO HAS ALSO CONTRIBUTED TO THE CREATION AND CONSOLIDATION OF ASSOCIATIONS FOR DOWN SYNDROME IN IBEROAMERICA (ARGENTINA, MEXICO, VENEZUELA, BRASIL AND CHILE) AND KEEP COOPERATION PROGRAMMES WITH THESE COUNTRIES.
SOME FIGURES • PEOPLE WITH DS ATTENDED TO SINCE 1976: 932 • PEOPLE WITH DS CURRENTLY BEING ATTENDED TO: 458 • COUNTRIES OF ORIGIN: 14 • AGES: FROM ZERO TO 64 YEARS • BUILDINGS AND INSTALLATIONS: 5,322m2 • ANNUAL BUDGET 2010: 2,324,402€ • FUNDING: REGIONAL GOVERNMENT, SPANISH GOVERNMENT, UIB AND SPONSORS. ALL ASNIMO SERVICES ARE FREE OF CHARGE FOR FAMILIES
FUTURE OBJECTIVES • PRIORITISE AND REINFORCE EARLY INTERVENTION SERVICES • IMPROVE INTEGRATION INTO MAINSTREAM SCHOOLS OF PUPILS WITH DS • TRAIN THEM TO WORK AND FIND THEM JOBS: EMPLOYMENT INTEGRATION • PARENTS SCHOOL – CARE FOUNDATION • INDEPENDENT LIFE: SHELTERED HOUSING: SOCIAL INTEGRATION • CARE FOR THE ELDERLY (SOME 25% OF OUR CLIENTS ARE AGED OVER 50 YEARS) FOR THIS….
INFORMATION ABOUT PEOPLE WITH DOWN SYNDROME IN SPAIN • In Spain there are approximately some 30,000 people with Down Syndrome • Approximately 1 in every 900 children is born with Down Syndrome • Currently life expectancy is 56 years, but with current healthcare and treatment methods an increase in life expectancy is envisaged which occasionally may reach 70 years
Analysing distribution by age, it is observed that people with Down Syndrome are very young. Currently 90% are younger than 35 years. • It affects different social classes equally and geographical distribution is practically uniform. • Distribution by gender is similar (male 54.4%, female 45.6%)