June 2024 Disability Advocacy Update

RVA News

June has been a busy month for Rare Voices Australia (RVA) in the disability space with engagement with government on several of the key disability reform initiatives currently underway. As noted in RVA’s March Disability Advocacy Update, a comprehensive disability reform agenda is underway across Commonwealth and State Governments.

RVA is particularly pleased that we have been invited to present at some key forums on behalf of Australians living with a rare disease. Thanks to Louise Healy, RVA’s Education and Advocacy Manager, and Fiona Lawton, RVA’s Disability Advocacy Manager, for representing RVA and the estimated two million Australians living with a rare disease.

National Disability Insurance Scheme Taskforce – Provider and Worker Registration

On 7 May, RVA lodged a submission with the National Disability Insurance Scheme (NDIS) Provider and Worker Registration Taskforce (Taskforce). This submission was directly informed by 15 RVA Partner groups/organisations that participated in our virtual roundtable engagement session in April 2024. Read the submission.

On 20 June, RVA was invited to a private session with Taskforce member, the Hon Vicki O’Halloran AO CVO, former Administrator of the Northern Territory and former President of National Disability Services Australia. This was an excellent opportunity to further explore RVA’s position regarding mandatory registration and the need to build workforce capability to meet the needs of people living with a rare disease and disability impacts.

Joint Standing Committee on the National Disability Insurance Scheme – Participant Experience in Rural, Regional and Remote Australia

On 28 June, RVA was invited to a public hearing to present to the Joint Standing Committee on the NDIS (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.

Louise and Fiona braved the Canberra winter to attend in person and represent the rare disease sector, highlighting:

  • The need for person-centred, place-based delivery of disability services
  • Opportunities of alternative commissioning
  • The need for a re-design of the service delivery model and increased workforce capacity and capability to meet the needs of Australians living with rare disease

RVA is committed to ensuring the conversation moves from equity of access to disability services, to one that considers equity of outcomes in terms of quality of life for Australians living with a rare disease and their families/carers.

RVA is grateful for these opportunities and continues to actively seek representation on key co-design panels and forums.

Draft Legislation – National Disability Insurance Scheme Amendment Bill 2024

On 27 March 2024, the Hon Bill Shorten MP, Minister for the NDIS, 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 some recommendations from the NDIS Independent Review. The Bill was referred to the Community Affairs Legislation Committee for inquiry. On 17 May, RVA provided a submission to the Committee and noted that some of our proposed amendments were made to the draft Bill. However, RVA remains concerned that key elements of the Bill need further amendment to ensure it is fit-for-purpose for all current and future NDIS participants, particularly people living with complex rare disease and disability impacts.

The Committee have tabled their report this month with recommendations to pass the (slightly) amended draft Bill. The Bill was passed by the House of Representatives on 5 June after a range of new parliamentary amendments were proposed by the government and is currently before the Senate.

Fiona continues to closely monitor the passage of this legislation and RVA will provide additional submissions to inquiries as required.