As noted in Rare Voices Australia’s (RVA) March 2024 Disability Advocacy Update, a comprehensive disability reform agenda is underway across Commonwealth and State Governments. As the national peak body for Australians living with a rare disease, RVA continues to advocate for the best outcomes for the estimated two million Australians living with a rare disease, including those impacted by a disability.
May 2024 Disability Advocacy Summary
• Lodged a Submission with the National Disability Insurance Scheme (NDIS) Provider and Worker Registration Taskforce.
• RVA was advised by the Australian Government Department of Social Services that we were unsuccessful in our application for a grant as a Disability Representative Organisation (2024-2026). While this outcome was disappointing, RVA was pleased to see that for the first time, the government is funding a dedicated Disability Representative Organisation for people with intellectual disability and chromosomal variations. The consortium, led by Down Syndrome Australia, includes the following rare disease organisations and several RVA Partners:
- Angelman Syndrome Association Australia
- Australian X and Y Spectrum Support
- Cri-du-Chat Support Group
- Fragile X Association of Australia
- Prader-Willi Syndrome Australia
- Smith-Magenis Syndrome Australia
- Turner Syndrome Association of Australia
Congratulations to those involved in the consortium, including RVA Partners, Angelman Syndrome Association Australia and Fragile X Association of Australia!
• Lodged a Submission with the Community Affairs Legislation Committee Inquiry on the NDIS Amendment – (Getting the NDIS Back on Track No. 1) Bill 2024. Thank you again to the RVA Partners that participated in our Virtual Roundtable in April and contributed their knowledge and insights to RVA’s Submission.
• Attended the inaugural NDIS Neurological, Palliative Care and Rare Disease Working Group, which will meet bi-monthly to explore current issues and future policy reform.
• Attended an NDIS reform morning tea update in Brisbane with the Hon Bill Shorten MP, Minister for the NDIS.
• RVA has received an invitation from the Joint Standing Committee on the NDIS (the Committee) Inquiry into the NDIS participant experience in rural, regional and remote Australia to appear in person before the Committee in Canberra on 28 June 2024 based on the Submission RVA lodged in February 2024.
• Continued engaging in an ongoing monthly stakeholder engagement meeting with the NDIS Stakeholder Engagement Team. RVA is pleased to be receiving more invitations and opportunities to engage as the national peak body for Australians living with a rare disease, including those impacted by a disability. We will continue working hard to formalise these arrangements to ensure RVA remains actively involved in all relevant areas of disability policy reform.
• Met with Minister Shorten’s office to discuss the importance of rare disease expertise informing co-design of the proposed reforms and to discuss steps for the collection, collation and analysis of NDIS rare disease participant data.
