Down Syndrome Australia

Down Syndrome Australia was established in 2011 as the peak body for people with Down syndrome in Australia. Our purpose is to influence social and policy change, and provide a national profile and voice for people living with Down syndrome. We work collaboratively with the state and territory Down syndrome associations to achieve our mission.Our vision is an Australia where people living with Down syndrome are valued, reach their potential and enjoy social and economic inclusion.

Key Activities and Achievements over the last year

A brief overview of key achievements by Down Syndrome Australia over the last year include:
  • The commencement of our new CEO, Dr Ellen Skladzien in October 2016;
  • Ongoing advocacy to ensure that theNational Disability Insurance Scheme (NDIS) meets the need of people with Down syndrome in Australia including through involvement in the NDIS CEO forum and numerous consultations with representatives of the relevant Agency. We have provided a comprehensive submission to the Productivity Commission Study into the Costs of the NDIS (
  • Work to ensure that women have access to good information and support during prenatal testing. This has included submissions and advocacy regarding public funding of non-invasive prenatal screening and the need for improved information;
  • Collaboration with the National Ethnic Disability Association to address discrimination against people with Down syndrome regarding migration to Australia. We have documented a range of cases where people with Down syndrome and families have had visas rejected based entirely on the fact that a member of the family had Down syndrome. ;
  • Participation in Department of Social Services consultation on disability employment services including through providing a comprehensive submission:;
  • Ongoing advocacy to ensure access to the Disability Support Pension and ensure that people with Down syndrome are not subject to onerous and inappropriate medical reviews:;
  • Participation in the Disability Discrimination Commissioner National Consultations on ‘Shaping our Future’. Our submission can be found here:;
  • The release of the first DSA National Survey collecting information from people with Down syndrome and their families.
  • Hosting our annual World Down Syndrome Day morning tea at Parliament Houseon 22March 2017.
  • Multiple meetings with politicians and key stakeholdersto continue our advocacy on a range of issues including health, inclusive education, employment, ageing and NDIS; and
  • Officially announcing the successful bid for the 2022 World Down Syndrome Congress, with preliminary planning already