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 helpdesk@downsyndroom.nl

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

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