History 2The Down Syndrome Association of NSW was formally established in 1980, by parents (mostly of very young children with Down syndrome) who had participated in the Macquarie University Down Syndrome Program.

Two hundred parents attended the first public meeting to gauge interest in a parent support organisation for families of children with Down syndrome. The Association, as it was known, quickly established its credentials. A central office was set up in Parramatta with a small paid staff, and a little funding from the NSW Government, to coordinate support and information services across NSW. Support of 'new' families, during the period immediately after birth and diagnosis was the major priority in the early years.

By the early 1980s, information kits and a video for new parents had been produced and distributed through maternity hospitals. With advances in technology information gathering and dissemination services developed. The Newsletter and library grew in quality and content as more good quality information became available worldwide.

At the same time changes were taking place locally and internationally with respect to families' confidence, expectations for people with Down syndrome, health care, schooling, and integration into community life. By the 1990s, the children of many of the foundation members of the Association were entering adolescence and young adulthood, and their needs for support and information had to be addressed. The expertise of the Association increased with the development of the members' children and with the increasing knowledge shared by similar groups worldwide.

History 1

In 1988, the DSA of NSW held its first statewide conference for families at Macquarie University. In the following years, a program of seminars and workshops was developed and offered across the state. The Association's reputation continued to grow amongst families, professionals and with government. The staff remained small, but available to members statewide. A significant range of activities to support and advocate for people with Down syndrome and their families continued to be delivered on a tight budget. 

Membership of the Down Syndrome Association of NSW had grown to approximately 1300 by the year 2000 and the number of enquiries received each year reached 5,000. The referral rate of newly diagnosed families by hospitals to DSA of NSW was close to 100%. All aspects of the Association's activities continued to grow and improve. 

The year 2000 also saw the 7th World Congress on Down Syndrome hosted by the DSA of NSW in Sydney. The Congress attracted 750 delegates from around Australia and the world. The highlight was the participation of 100 adults with Down syndrome in a parallel program, and the social program. This event proved a catalyst for developing the advocacy movement for people with Down syndrome in NSW.

History 3Today Down Syndrome NSW (DS NSW) faces new challenges in representing the needs and interests of people with Down syndrome and their families. More calls are received each year by prospective parents who have received a pre-natal diagnosis of Down syndrome, greater numbers of our children attend mainstream classes at school, the children of 35 years ago are adults dealing with adult issues of employment and accommodation and, in some cases, retirement.

DS NSW remains a parent run association, responsive to the needs of its members and thoroughly committed to the quality provision of information about Down syndrome, support for our community and continued advocacy for people with Down syndrome and their families.