On Tuesday 16 April, Rare Voices Australia (RVA) convened a virtual roundtable to explore two important areas of proposed changes to the National Disability Insurance Scheme (NDIS):
- Draft Legislation – National Disability Insurance Scheme Amendment Bill 2024
On 27 March 2024, the Hon Bill Shorten MP tabled draft legislation, the NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) to amend the NDIS Act 2013 to ensure sustainability and to reflect recommendations from the NDIS Independent Review. The Bill has been referred to the Community Affairs Legislation Committee for inquiry and report by 20 June 2024. Submissions are due by 17 May 2024.
- National Disability Insurance Scheme Provider and Worker Registration Taskforce
The NDIS Review recommended a graduated mandatory registration (or enrolment) of all NDIS providers. The Federal Government has appointed the NDIS Provider and Worker Registration Taskforce (the Taskforce) to provide advice on the design and implementation of the new risk-proportionate regulatory model.
RVA was delighted to have 15 RVA Partner groups/organisations (rare disease groups/organisations) join in on a productive and engaging session, focused on examining the systemic issues experienced by NDIS participants living with a rare disease, and proposing solutions to improve both outcomes and experiences.
The session was facilitated by RVA’s Disability Advocacy Manager, Fiona Lawton. A PDF copy of the roundtable presentation is available. Download the PDF.
RVA will provide a written submission to the Taskforce (due 7 May 2024) as well as a detailed response to the draft legislation to the Community Affairs Legislation Committee in early May 2024.
National Disability Insurance Scheme Neurodegenerative Disorders and Palliative Care Working Group
Following several years of advocating to the National Disability Insurance Agency (NDIA), RVA is pleased to be invited to join the newly created NDIS Neurodegenerative Disorders and Palliative Care Working Group (N&PWG). The NDIS states that it “… recognises the unique and often progressive needs of people with neurodegenerative or neuromuscular or rare conditions, including those requiring palliative care, and the complexity faced in navigating multiple services and systems.”
The N&PWG aims to provide strategic advice to the NDIS on a set of defined issues relating to neurodegenerative, neuromuscular, palliative care, and rare conditions, including:
- Challenges with accessing the NDIS and timely decisions where functional impairment can progress rapidly
- NDIA staff and partners in the community have insufficient knowledge regarding rare conditions and disorders
- Synchronisation of planning where multiple family members are impacted with the same condition
- The intersection of the NDIS with other mainstream and informal supports, including health
The N&PWG will meet bi-monthly with the first meeting being held virtually on 23 May 2024 to examine the Draft Terms of Reference.
RVA will be represented by Fiona Lawton. Fiona will continue to engage with RVA Partner groups/organisations and people living with a rare disease and their families to ensure the most appropriate representation at the N&PWG.
