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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
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
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
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
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
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
Down syndrome in The Netherlands - 6Youngsters with Down syndrome from age 18
onwards, in principle, have the right to vote and more and more of them exercise that right
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
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 …
SDS – the finances
The annual budget amounts to 400 kEuro
Main funding sources are (averaged):Donations by members 150 kEuroSemi-governmental subsidy 120 kEuroProject subsidies 50 kEuroGifts 50 kEuroMiscellaneous 30 kEuro
Our activitiesThe 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%
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 [email protected]
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
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
Our activities - 5
The SDS is responsible for the introduction in The Netherlands of:
The concept of early intervention Early reading
Our activities - 6
The SDS is responsible for the introduction in The Netherlands of:
World Down Syndrome DayThe SDS has achieved a highly significant
improvement in the image of Down syndrome