FAQ on the changes to Down Syndrome NSW
16 November 2023
Q: What is this announcement about?
A: The Down Syndrome Australia board have announced that Down Syndrome NSW is no longer a member of Down Syndrome Australia.
This decision has been made following significant discussions over the past seven months, careful consideration by the DSA board, and the failure of an independent mediation process to agree an acceptable outcome.
As a result, the DSA Board, in consultation with state and territory member organisations, have voted to cease the membership of DSNSW.
The board of DSA came to this decision after exhausting avenues to work together. This decision was made in accordance with the values of the Down Syndrome Australia Federation.
Q: What does this mean for the Down Syndrome community in NSW? Will this affect our support?
A: Funding currently provided by DSA to DSNSW under contract will continue.
DSA currently provides funding to DSNSW to support their operations and to run programs including Information for Life services, Employment Connections and Pathways workshops.
DSA is committed to ensuring successful delivery of existing programs which directly benefit people with Down syndrome in NSW and their families.
DSA is also working with several complimentary providers to ensure people with Down syndrome in New South Wales are supported through this transition.
In the future delivery of projects in NSW will still occur through DSA and in partnerships under contract with other NSW based organisations with similar purpose and expertise.
We anticipate that DSNSW programs such as Up Club and Pathways workshops, Information and Support services and Employment projects will continue with little disruption.
DSA will also provide assistance to the community in NSW to navigate this change and the supports available and we encourage people in NSW to reach out to us at firstname.lastname@example.org or 1300 344 954.
Q: How does this affect Down Syndrome Australia’s national reach for people with Down syndrome?
A: DSA still has strong relationships within and across the NSW community, as it does with communities in SA and NT who are also not represented as members of DSA through a State or Territory organisation.
DSA will continue to involve people with Down syndrome from NSW in our work such as our Health Ambassadors, Employment Ambassadors, the Down Syndrome Advisory Network (DSAN) and more.
DSA also has a number of partner organisations across Australia who we work closely with and we are currently exploring our options with a number of organisations and individuals to ensure we continue to have strong representation across Australia.
Q: I have Down syndrome, or support someone with Down syndrome and live in NSW, how does this affect me?
A: DSA represents the interests of all people with Down syndrome and their families across Australia at the national level. People in NSW remain important members of the community whose interests and needs we represent.
DSNSW are still being funded by DSA to deliver programs such as Information and Support services, Employment connections and Pathways workshops. These programs should not be impacted.
DSA are also working with other NSW organisations to support the community across NSW.
We do not anticipate that DSNSW directly delivered programs will be impacted by this change in membership.
Q: Will they still be called Down Syndrome New South Wales and use the current logo?
A: They will remain Down Syndrome New South Wales but will not use the same logo or branding as that is owned and trademarked by DSA and is only available for use by members.
Q: What about the National website?
A: All of the National resources on the Resource Hub will continue to be available for anyone in NSW, as will all the other information on the national website (www.downsyndrome.org.au).
DSNSW specific information will no longer be hosted on the national website as they are no longer a member.
We anticipate that DSNSW will establish their own website. The national website will include a link to any new DSNSW website.
Q: Who is the complimentary or alternative provider in New South Wales?
A: In some cases, the Down syndrome community in NSW will still engage with DSNSW and for other services they may be directed to an alternative provider.
If you have any questions, reach out to us at email@example.com or 1300 344 954 for more information.
Q: Where can I find information on Down Syndrome NSW if they are no longer a member of DSA?
A: We anticipate that DSNSW will establish their own website. The national website (www.downsyndrome.org.au) will include a link to any new DSNSW website.
Q: Where can I find information on Down syndrome if I am in NSW?
A: The national website (www.downsyndrome.org.au) will continue to be available to anyone in NSW. The website contains National resources on the Resource Hub, as well as other information on Down syndrome and our programs and supports.
DSNSW specific information will no longer be hosted on the DSA Website as they are no longer a member.
Q: How are Down Syndrome NSW and Down Syndrome Australia different?
A: Down Syndrome NSW and Down Syndrome Australia are separate organisations.
Down Syndrome Australia (DSA) is the national peak organisation for people with Down syndrome and their families.
In 2011, the state and territory Down Syndrome organisations (including DSNSW) established Down Syndrome Australia as the national representative, or peak body. This was to ensure people with Down syndrome and their families were being effectively represented at a national level.
DSA delivers a range of information, support and programs nationally in collaboration with our members and partners including the Right to Work Employment Project, Pathways to Independence Project, Inclusive Communication in Health and the National Information for Life Program.
DSA advocates at a national and international level for the rights of all people with Down syndrome and also supports people with Down syndrome to be self-advocates.
DSA and its members work closely together but are all separate legal organisations operated independently of each other. We work together under the guiding principles of Trust, Collaboration and Respect.
Down Syndrome NSW is a state-based organisation operated independently of DSA. They deliver a range of information, support and programs for the NSW community, and advocate on a state level to the NSW Government. Down Syndrome NSW was a member of Down Syndrome Australia.
Q: What is the Down Syndrome Australia Federation?
A: Down Syndrome Australia works as a Federation – very similar to Australia as a country. Each state and territory member provides support, information and resources to their community. Collectively, all the members come together and are represented by Down Syndrome Australia at a national level.
In 2011, the state and territory Down Syndrome organisations established Down Syndrome Australia as the national representative, or peak body. This was to ensure people with Down syndrome and their families were being effectively represented at a national level to influence social and economic change. The purpose of the Federation is to work collaboratively in the best interest of all state and territory members to support people with Down syndrome and their families.
Down Syndrome Australia is governed by an independent board that is comprised of representatives from across Australia, to ensure collective representation, but with a focus on national issues.
Down Syndrome Australia works collaboratively with its members and partners, with regular meetings between staff, including the leadership teams, as well as providing funding to state and territory organisations.
To learn more about the Federation, you can visit: https://www.downsyndrome.org.au/about-us/our-federation/
Q: Will Down Syndrome Australia accept memberships from individuals in NSW?
A: Down Syndrome Australia represents people with Down syndrome in Australia through a combination of organisational members and as part of organisational networks and partnerships. In addition to this we work alongside the Down Syndrome Advisory Network and Ambassador networks to ensure direct contact with people with Down syndrome, their families and carers. DSA is not currently accepting individual memberships.
Read more about the Federation structure on our website.
Q: What are the values of the Down Syndrome Australia Federation?
A: Down Syndrome Australia, and the Federation, operates on values of inclusion, collaboration, trust and respect. These values are in place to ensure all Federation member organisations can successfully work together towards our common goal of supporting all people with Down syndrome in Australia to be included and achieve their full potential.
Q: I still have questions about what is happening, who can I talk to?
If you have questions you can email us at firstname.lastname@example.org; or email@example.com or call 1300 344 954.
Read the full announcement on our website here.
Read about this in Easy Read here.