Our History

The NZDSA started in a family lounge in Auckland in 1981 when four mothers of children with Down syndrome, unable to find support, started a support group themselves.  Similar groups began to spring up around the country and, in 1987, the groups joined forces to create a national “Down’s Association” with funding from IHC.  

Its stated aims were:

  • To support the family with a person with Down syndrome;
  • To support the person with Down syndrome;
  • To bring public awareness to the issues surrounding Down syndrome.

Over the years those original aims have been both maintained and added to as the association’s membership and role has grown.

In 1994 the name changed to the New Zealand Down Syndrome Association and in 1999 the association became an incorporated society – an independent, membership-based non-profit organisation.

Still firmly rooted in a base of families meeting for coffee in lounges around the country, the association has naturally progressed to becoming an organisation that works to address any unmet needs, concerns and aspirations of those families and people with Down syndrome.

The NZDSA now not only provides support but proactively works towards improving the health, educational and social outcomes of people with Down syndrome: producing information both for families and for professionals and agencies which work with people with Down syndrome; reviewing and critiquing Government policy; and initiating projects which will have a positive impact on people with Down syndrome.

(For an overview of the NZDSA’s current activities see What We Do.) (Link to What We Do page – open in new window)
The inspiration for the work of the NZDSA comes from the people with Down syndrome themselves. To celebrate the achievements of people with Down syndrome, the association held its inaugural NZDSA National Achievement Awards in 2007 and the awards are now held annually to coincide with World Down Syndrome Day.

The NZDSA has also worked towards providing a leadership platform for people with Down syndrome.

In 2012/2013 the NZDSA supported a group of young adults with Down syndrome to undertake self-advocacy training, which led to the formation of the self-advocacy leadership group STRIVE. The association continues to hold self-advocacy workshops and STRIVE has become a valued voice within the association. In 2016 the first STRIVE committee member was appointed as a representative on the NZDSA National Committee.

The current role of the NZDSA is reflected in the 2016 update of the NZDSA mission and vision statements:

Mission Statement – To work alongside families, whānau and carers to support and empower people with Down syndrome to realise their potential and aspirations through all life stages and within all communities.

Vision Statement – That people with Down syndrome are valued and equal members of their community, fulfilling their goals.

If you have any questions about the NZDSA, or would like to support or join us, please Contact Us