Madrid 1997 World Down Syndrome Conference Quality of Life Workshops


Contardi, A.
AIPD Viale delle Milizie, 106 00192 Roma (Italia) Phone/Fax: 06-3722510, E-mail: AIPD@FLASHNET.IT

The Italian Association for persons affected by Down's syndrome is an association of families which acts as a reference point for the parents of children and adults affected by Down's syndrome.To stimulate and sustain the growth of the autonomy of Down persons, the first educational course aimed at developing the capacity for autonomy in Down persons was introduced in the AIPD association in Rome in 1989. The course which was designed for boys and girls from 15 to 20 years, has been repeated every year with an ever greater participation and replicated in many other cities. Now there are courses in Rome, Milan, Avellino, Campobasso, Teramo, Viterbo, Pisa, Formia, Oristano and more than 200 persons with Down Syndrome are involved. The educational objectives proposed by the program are grouped into five areas:- communication - orientation - road behaviour - using money - shopping and more generally making use of services. All the youngsters involved exhibit change; at the end of the course all are able to cross roads by themselves, use a public telephone, ask information in order to resolve their difficulties and how to go shopping. Furthermore, there are aspects of each personality, such as self-confidence, self-esteem, and the capacity to establish relations with others, which have undergone great changes in the direction of a greater knowledge and structural development of their own identities, first and foremost as adolescents, and then as adolescents with certain limitations, but nevertheless as adolescents able to do a wide variety of things.In order to make the course known and to allow it to the copied, the team who developed it has also published a book on the course (A. Contardi, 'Libertà possibile' [the freedom possible] publisher, La Nuova Italia Scientifica) and produced a promotional video, "Ragazzi in gamba" [Clever kids]

Clark, G.
9 Heather Street. Collaroy Plateau New South Wales 2098 61 2 9971 0721 (South Australia)

Today the social image of a person with Down Syndrome is much better than it was when I was born, but more tolerance is needed. Society today needs to be more accepting and tolerant, not just for people with Down Syndrome but for all people who are a little different.I know I have Down Syndrome, I know that it means I have an extra chromosome, I don't really understand what that means except that I look a little different and that I am supposed to be slow. My mum says I have never been slow in my life but she is my mum and she loves me. I know I look like my dad and it's important for me to have my own identity because I am an individual.

Engels, N.
Thull 7 a, 6365 AC Schinnen, (The Netherlands)

When Peetjie was born in 1978, her parents were told that she would possibly never walk, talk or even recognize anyone. Her first IQ-test yielded 50. Peetjie was supposed to go to an SLD. Her parents ignored that and fought to get her a place at an MLD. From age 10, Peetjie's parents began to apply Feuerstein's Instrumental Enrichment, while she changed to a regular school, which she completed in the same way as her peers. Successively, she went to a regular secondary school, where she earned her certificate after the same length of time as her peers. At present, she goes to a senior secondary school for personal and social health care. She has always had the same curriculum as her peers in e.g. Dutch, English, maths, biology, etc. She travels independently, on her motor scooter or by train, is a member of normal clubs, e.g. for swimming, judo and horse riding, practices downhill skiing and windsurfing, plays the clarinet and sings in a choir. She knows perfectly well how to manage her life and what kind of job she prefers. Her results are all the more remarkable, because that she also has very limited vision and hearing, and several endocrinological deficiencies. There are so many prejudices. Everyone interferes and acts as if he/she knows things better than Peetjie and her family. Whenever she makes a mistake, it is always considered as being caused by her having Down syndrome. As a person with a handicap you have to be perfect!

McConkey, R.
School of Health Sciences. University of Ulster. N. Ireland. BT37 0QB (U.K.). Fax: 44-189-682-2159.

The key to successful community living is productive employment for people with intellectual disabilities. This paper reviews strategies used internationally to do this and concludes that a combination of factors contribute to success, namely:- family motivation and involvement in training programmes;- the educational curriculum focuses on the skills required for community living and provides structures learning opportunities for children and young people;- the acceptance of people with disabilities by local communities is actively promoted and practiced;- opportunities are created for young people to gain work experience in a range of realistic settings;- various options for productive work are utilized, incluiding family businesses, co-operatives, social firms, self-directed work and competitive employment. These strategies are illustrated in two training packages produced for use in developing countries. Based around specially-made video-recordings made in the Asian-Pacific Region and in Africa, the packages are designed to be used with parent and community groups as well as with staff in disability services to enable them to create livelihoods for people with disabilities in their locality.
Revised: January 4, 2001.