On 28 June 2024, Rare Voices Australia (RVA) was invited to a public hearing to present to the Joint Standing Committee on the National Disability Insurance Scheme (the Committee) regarding their Inquiry into the participant experience of people living in rural, regional and remote areas. This invitation was based on the strength of RVA’s submission to the Committee in February 2024. We thank the RVA Partner groups/organisations that contributed examples of their lived experience for the submission. Read the submission.
Fiona Lawton, RVA’s Disability Advocacy Manager, and Louise Healy, our Education and Advocacy Manager, represented RVA as the national peak body for Australians living with a rare disease. RVA remains concerned that some of the questions and comments from policymakers at the public hearing indicate an ongoing lack of understanding about the important link between rare diseases and disability, and most importantly, how this impacts a significant number of Australians living with a rare disease. (RVA estimates that 100,000 NDIS participants live with a rare disease comorbidity.) Certain questions displayed a very limited understanding of the arbitrary line policymakers often draw between health and disability supports, creating significant gaps in care and support for those with a disability caused by a rare disease. RVA attempted to raise these concerns during the public hearing. We have also responded to questions on notice regarding these matters, expressing our concerns and highlighting common experiences raised during our virtual roundtable engagement session in April 2024 with RVA Partner groups/organisations.
Public Hearing Hansard Transcript
You can read the questions and comments raised in the public hearing Hansard transcript. RVA believes our responses to the questions on notice will be published on the Inquiry web page.
Rare Voices Australia’s Ongoing Rare Disease Disability Advocacy
RVA will continue having robust discussions with the National Disability Insurance Agency, the Hon Bill Shorten MP, the Minister for the National Disability Insurance Scheme, and other policymakers to advocate for rare disease data collection and rare disease expertise to inform current reform activities and policy codesign.
