As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to advocating for people living with a rare disease, including those with disabilities. RVA estimates that 100,000 National Disability Insurance Scheme (NDIS) participants live with a rare disease comorbidity. The August Rare Disease Disability Advocacy Update focuses on the government’s response to the Disability Royal Commission (DRC), the NDIS reform agenda, and the evolving concerns within the rare disease community.
Government Response to the Disability Royal Commission
On 31 July 2024, Federal, state, and territory governments released their responses to the DRC’s recommendations.
The DRC made 222 recommendations for state and Federal governments to improve laws, education, employment, and housing options for people with disabilities, noting multiple failings to protect people with disabilities from human rights abuses, and breaching international obligations. Of the 222 recommendations, the Federal Government said 172 fell within its scope. It has accepted 13 recommendations in full and another 117 in principle. The Federal Government has identified another 36 for further consideration.
There has been widespread disappointment in the disability community regarding the government’s failure to fully commit to some of the most crucial recommendations. RVA is concerned about the lack of comprehensive legislative reform and that after nine months of consideration by governments, the systemic issues highlighted by the DRC may not be adequately addressed. Read RVA’s submission to the Disability Royal Commission.
Below is a high-level comparison of RVA’s key recommendations and how they were addressed by the government.
Summary:
Accepted in Full: Recommendations related to the cognitive disability health capability framework and the National Disability Data Asset.
Accepted in Principle: Recommendations related to the National Disability Commission, workforce strategy, and improved access to clinical placements.
Noted: The recommendations regarding the Disability Rights Act, strengthening the Disability Discrimination Act (DDA), and establishing a First Nations Disability Forum were acknowledged but not committed to.
Draft Lists of National Disability Insurance Scheme Supports
RVA has been actively engaged in the NDIS reform agenda in August.
As a member of the NDIS Neurodegenerative, Palliative and Rare Disease Advisory Group, RVA attended an out-of-session consultation on 16 August 2024 with leaders from the National Disability Insurance Agency (NDIA). RVA expressed our concerns regarding the brief consultation periods provided for crucial decisions about eligible supports under the NDIS.
We subsequently provided a detailed submission to the Department of Social Services (DSS) consultation on the draft lists of NDIS Supports and shared our submission with the NDIA. Download RVA’s submission.
Key issues highlighted in our submission include:
- The use of narrow and prescriptive lists in this complex disability ecosystem is problematic.
- Lack of time and planning for community/sector engagement and codesign to ensure the ‘transitional’ rules are appropriate.
- There continues to be a lack of authentic co-design with the disability sector.
- RVA requests that a Stakeholder and Community Engagement Plan be published.
- RVA also noted that the draft lists contain significant assumptions that the state and territory governments will agree to fund and provide foundational, mainstream, and community supports for people with disability in a way that meets their needs. Yet, we currently have no assurance they will do so.
- We are seeking urgent confirmation that where no mainstream service exists or is not practically available, or foundational supports are not yet implemented, the NDIS will continue to fund these reasonable and necessary supports to ensure no person with a disability goes without essential support.
- RVA remains deeply concerned about sections of the draft NDIS Supports List that refer to ‘Mainstream Health’ responsibilities that will not be considered NDIS Supports, including life-sustaining assistive technology for the management of disability-related health supports.
RVA remains deeply concerned about the implications of these developments for people living with rare diseases and disabilities. The potential for reduced services and stricter eligibility criteria under the NDIS could disproportionately impact our community, many of whom rely on comprehensive and tailored supports to manage their conditions.
RVA appreciates the insights and input from our RVA Partner groups/organisations (rare disease organisations), many of whom also provided detailed submissions for consideration. With the passing of the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024 on 22 August, RVA will carefully monitor the finalisation of these lists of NDIS Supports and actively seek to be part of the co-design process for the development of the suite of new NDIS Rules.
Foundational Supports
RVA continues to advocate for formal recognition and engagement as a Disability and Carer Representative Organisation to ensure the considerable and complex needs of people living with rare disease disability impacts are met.
RVA will continue to advocate for a more inclusive, transparent, and rights-focused approach to the NDIS and broader disability reforms. We are working closely with RVA Partner groups/organisations and other advocacy groups to ensure the voices of all people with rare disease disabilities are heard and considered in all policy discussions.
RVA was pleased to receive an in-person invitation to attend the Queensland Disability Conference on 16 August 2024 in Brisbane. We had the opportunity to engage with senior State and Federal Government advisors regarding the challenges of the rare disease community and the arbitrary line that is all too often drawn between disability and health sectors.
RVA will continue to engage with state governments to advocate for comprehensive disability reform through the development of the Foundational Support Strategy. We are actively engaging with government officials, policymakers, and other key stakeholders to emphasise the importance of co-designing reforms with the disability community. RVA will continue to submit formal responses to relevant consultations and work to extend these consultation periods to ensure meaningful input.
RVA encourages all members of the rare disease sector to remain informed about these developments and to actively participate in advocacy efforts. Your voices are crucial in helping to shape policies that affect the rare disease community.
