Open Letter to WA Minister for Disability Services

Down Syndrome Australia has written to the WA Minister for Disability Services advocating on behalf of Western Australians with Down syndrome to have equal access to the National Disability Insurance Scheme. 

Honourable Stephen Dawson MLC
Minister for Environment; Disability Services 12th Floor, Dumas House
2 Havelock Street
West Perth WA 6005 

Dear Minister Dawson, 


I am writing to you on behalf of Down Syndrome Australia to outline our concerns regarding the WA NDIS and request that you consider the impact that a separate scheme for WA would have on people with Down syndrome and their families. It is our view that such a scheme does not provide equity for Western Australians with a disability. 

Down Syndrome Australia (DSA) 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 organisations to achieve our mission. 
Our vision is an Australia where people with Down syndrome are valued, reach their potential and enjoy social and economic inclusion. 

We see the NDIS as key to enabling this inclusion, and we strongly support a national disability scheme to ensure all Australians with Down syndrome have the same opportunities and support, no matter where they live. DSA has assisted Down Syndrome WA in its advocacy to be part of the NDIS for several years. This has included meetings with federal politicians, correspondence with then WA Disability Minister, Helen Morton, DSA CEO representation at a WA Parliamentary Morning Tea for World Down Syndrome Day in 2016 (thank you for your role in organising that event), and ongoing advocacy for the WA Down syndrome community via media and our membership of the Australian Federation of Disability Organisations (AFDO) and the Disability Australia Consortium. 

DSA continues to have significant concerns that the WA scheme, committed to by the previous WA government just hours prior to caretaker mode, does not provide parity and equal opportunity for the 1500 Western Australians with Down syndrome. Until this decision is overturned, we will continue to advocate on behalf of Western Australians with Down syndrome to ensure equal access to the national scheme. 

Minister Morton committed to completing the two trials in WA and to ensuring the opinions and wishes of people with disability and their families would be heard regarding decisions about the NDIS in WA. We now know that this did not happen. The independent evaluation was carried out before the trials were completed, and the views of people with a disability were not heard. The content of the evaluation report shows undue influence on terms of reference and flawed processes that resulted in just 21 people being interviewed out of around 4,000 in each scheme. 

DSWA has had feedback from its members that suggest that the WA NDIS scheme offers people less choice and control regarding choice of providers and how their funds are used, is more budget- controlled and harder to manage, compared with experiences in the Perth Hills NDIS area. 

As well as feedback from people with Down syndrome and their families informing our concerns, we have additional reasons to support a truly national NDIS. As a federation of Down syndrome organisations representing around 15,000 people with Down syndrome, their families and carers, we work with the state and territory organisations in a number of ways, including: 

  • Advocacy on issues relating to people with Down syndrome and their families at national and state level; 

  • Sharing of research opportunities and findings; 

  • Media, community education and awareness; 

  • Accessing national grants for national initiatives to be delivered in all jurisdictions; 

  • Producing quality resources for individuals, families and community that are nationally applicable; 

  • Ongoing sharing of expertise to provide national benefits and avoiding duplication of effort and cost; and much more. 

In recent times, and for the foreseeable future, much of this work will have an NDIS focus; a National NDIS focus. If WA does not join the national scheme, then much of this will not be helpful to Western Australians with Down syndrome and their families. DSWA will be in the unenviable position of not being able to collaborate with the other organisations, as grants, research and information will be different in WA. Indeed, it will be a great risk to the amount of support they can offer and even the sustainability of DSWA, as a peer-led organisation that has operated without ongoing government funding for over 30 years, if they find themselves going it alone. Perhaps even more importantly, the 1500 Western Australians with Down syndrome will not reap the benefits of the national grants, research and resources that other Australians will. 

We are, of course, focusing on the needs of people with Down syndrome. However, circumstances will be similar for other disability groups – Western Australians with disability not being able to get the same benefits as their peers in other jurisdictions. It will be an unconscionable and gross injustice on a massive scale if this occurs. 

So, we ask the new WA Government to discard the existing bilateral agreement, and negotiate new terms with the Federal Government, to ensure that WA is part of the NDIS and remains under the national legislation. We also ask that you work with people with Down syndrome and other disabilities, their families and their representative organisations to ensure their voices prevail when developing the national NDIS in WA. 

Thank you for your consideration of this matter. 
Kind Regards, 
Dr Ellen Skladzien
Down Syndrome Australia 

A 18/71 Victoria Crescent, Abbotsford VIC 3067 | E | P 1300 881 935 W

Read this open letter as a PDF 

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