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Stichting Downsyndroom (SDS)

Stichting Downsyndroom (SDS). The Dutch national parents’ organisation Located in the city of Meppel (in the North-East) At the 6th floor of the ‘twin tower’ at the right. Down syndrome in The Netherlands. There are about 13.000 individuals with Down syndrome

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Stichting Downsyndroom (SDS)

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  1. Stichting Downsyndroom (SDS) • The Dutch national parents’ organisation • Located in the city of Meppel (in the North-East) • At the 6th floor of the ‘twin tower’ at the right

  2. Down syndrome in The Netherlands There are about 13.000 individuals with Down syndrome Numbers of Down syndrome births have shown an upward trend From around 220 annually in the late eighties to a peak of around 320 in 2001 and 2002 There is a slightly downward trend since 2003 to approximately 260 births annually now

  3. Down syndrome in The Netherlands - 2 The figures is based on the model of De Graaf et al. (2010): Graaf, G.W. de, J.C. Vis, M. Haveman, G. van Hove, E.A.B. de Graaf, J.G.P. Tijssen & B.J.M. Mulder (2010). Assessment of prevalence of persons with Down syndrome; a theory-based demographic model. Journal of Applied Research in Intellectual Disabilities. DOI: 10.1111/j.1468-3148.2010.00593.x

  4. Down syndrome in The Netherlands - 3 Some 55-60 % of all children with Down syndrome start their school career in regular education at age 4-5 Some 40 % of these are still regularly included at the end of primary school (age 12-14) Only very few (5-10 annually) find a way to continue in regular secondary schools

  5. Down syndrome in The Netherlands - 4 Only very rarely Dutch youngsters with Down syndrome get regular jobs In most cases they will attend activities in Special Day Care Centres But: more and more of these centres organise activities within regular society, like e.g. small restaurants

  6. Down syndrome in The Netherlands - 5 More and more youngsters live in group homes that are gradually decreasing in size from e.g. 24 two decades ago to, say, 6 in more recent times Particularly if these group homes are organised on parent initiative, the inhabitants can be relatively independent

  7. Down syndrome in The Netherlands - 6 Youngsters with Down syndrome from age 18 onwards, in principle, have the right to vote and more and more of them exercise that right

  8. SDS – the structure Established per 22nd of March, 1988 (yes one day after WDSD-to-be!) It is a foundation It employs the equivalent of 4 full-timers It also employs one part-timer with Down syndrome It works nationwide and has 26 local branches, organized very informally Its present national office measures 140 m2

  9. SDS – the mission The mission of the SDS dates back to 1988 It has been literally adapted from the original mission of EDSA from 1987 (written in French!) Main aspects are: ... to promote the complete development of persons with Down syndrome … … to improve their health, training, adaptation to and integration in society …

  10. SDS – the finances The annual budget amounts to 400 kEuro Main funding sources are (averaged): Donations by members 150 kEuro Semi-governmental subsidy 120 kEuro Project subsidies 50 kEuro Gifts 50 kEuro Miscellaneous 30 kEuro

  11. Our activities The SDS aims at ‘lifelong (i. e. the total age range) and life wide’ However, its field of activities is heavily weighed towards the younger side In 2010, in the age range 0-4 years around 62% of all families with a child with Down syndrome have contacted the SDS. From 5-12 years this applies to 77%, 13-20 79%, 21-30 41%, and > 30 years only 3%

  12. Our activities - 2 The SDS first and foremost is an information organisation Therefore, its main products are: The full colour quarterly, ‘Down + Up’, with 64 pages inside the cover The website www.downsyndroom.nl The helpdesk via helpdesk@downsyndroom.nl

  13. Our activities - 3 The SDS has produced many books, brochures, CD’s, DVD’s, etc. Recent DVD productions are subtitled at least in English, but the number of languages has been rapidly increasing The DVD ‘Starting Up’ on early intervention has subtitling in 10 (!) languages Some of the SDS’ CD’s and DVD’s have won international prizes

  14. Our activities - 4 The SDS is responsible for the introduction in The Netherlands of: The first Dutch Preventive medicine checklist on Down syndrome The concept of the Down syndrome teams

  15. Our activities - 5 The SDS is responsible for the introduction in The Netherlands of: The concept of early intervention Early reading

  16. Our activities - 6 The SDS is responsible for the introduction in The Netherlands of: World Down Syndrome Day The SDS has achieved a highly significant improvement in the image of Down syndrome

  17. Our activities - 6 In the 21st century the SDS has not participated in any activities funded by the European Commission, neither as promoter nor as a partner However, if the work-force capacity would allow so, of course, the SDS is very much willing to do so

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