Rare Voices Australia (RVA) remains committed to advocating for the estimated two million Australians living with a rare disease, the majority of whom meet the Australian Government’s definition of living with a disability. RVA continues to engage directly with the National Disability Insurance Agency to ensure the needs of NDIS participants with a rare disease-related disability are considered.
The September 2024 rare disease disability advocacy update focuses on recent NDIS legislative changes and the commencement of the developments in foundational supports.
National Carer Strategy
In recognition of the importance of carers to the lives of people living with rare disease and disability impacts, RVA provided a submission to the Department of Social Services consultation on the National Carer Strategy. Read RVA’s Submission.
National Disability Insurance Scheme Reform Agenda
Following the passing of the NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 on 5 September 2024, several important changes to the NDIS are now underway. The first tranche of changes come into effect on 3 October 2024. RVA has engaged extensively with the NDIS on these reforms through a range of mechanisms, including:
- Our monthly RVA/NDIS Stakeholder Engagement meetings with the General Manager of Co-design and Engagement, held on 12 September
- The bi-monthly Neurodegenerative, Palliative Care, and Rare Disease (NPR) Advisory Group. Communiques from the NPR Advisory Group meetings are available on the NDIS website, with the latest meeting held on 24 September
RVA supports the need for a sustainable and robust NDIS and continues to raise concerns about the impact of recent changes, particularly for people living with complex conditions and rare diseases, priority populations, and people living in regional, rural and remote locations. RVA has expressed disappointment over the lack of thorough, transparent and inclusive co-design processes in developing the NDIS Supports Lists.
Rare Voices Australia Rare Disease Disability Round Table
On 25 September, RVA’s Virtual Rare Disease Disability Round Table was attended by almost 20 RVA Partner groups/organisations to discuss the key NDIS legislative changes and the impacts on the rare disease community. The group discussion included the yet-to-be-released final S10 NDIS Lists of Supports (what you can and cannot use NDIS funds for), capping of plan spends per plan periods, plan management determinations, and changes to change of circumstances requests. A copy of the slide deck is available to download. RVA remains concerned about the implications of these developments for people living with rare diseases and disabilities. Remain informed about the changes via the NDIS’ website. A list of Frequently Asked Questions is also located on the website.
Several people have expressed concerns about the impact of these changes. RVA understands that many aspects of the NDIS will not change immediately and we will continue advocating on behalf of the rare disease community. RVA acknowledges that this is a time of significant change in disability sector reform and that some people may find this challenging and distressing. We encourage you to reach out to your support team and access services as needed. Download these Digital Mental Health Factsheets for more information and a list of resources.
National Disability Insurance Scheme Actuary
RVA met with the NDIS Scheme Actuary on two occasions this month in our efforts to progress the development of an NDIS Rare Disease Disability Dashboard report. While we are grateful that some smaller dashboard reports are progressing for some specific rare diseases, there is still much work to be done.
Foundational Supports Strategy
RVA has actively participated in the ongoing consultation process for the Foundational Supports Strategy, which commenced on 2 September 2024 and remains open until 30 November 2024. This initiative aims to enhance the support system for people with disabilities who are not eligible for the NDIS.
RVA welcomes the government’s efforts to include a mix of general and targeted supports but has voiced concerns over foundational supports potentially being underfunded, especially in regional areas, and the long-term sustainability of these reforms, emphasising the risk that people with rare disease disabilities may fall through the cracks if mainstream services and foundational supports are not adequately resourced. RVA will continue to engage with state governments to advocate for comprehensive disability reform through the development of the Foundational Support Strategy.
RVA encourages all stakeholders 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. You can find more information regarding engagement and consultation opportunities below:
Consultations calendar and registrations
Thanks to RVA’s Disability Advocacy Manager, Fiona Lawton, and Education and Advocacy Manager, Louise Healy, for continuing to lead this important work on behalf of RVA.
