Rare Disease Disability Advocacy Update – November 2024

RVA News

In November, Rare Voices Australia (RVA) focused our disability advocacy efforts on the future pricing framework of the National Disability Insurance Scheme (NDIS). This work included extensive consultation with and lodging a Submission to the Independent Health and Aged Care Pricing Authority (IHACPA), which has been tasked with advising the Australian Government on options for the future operation of NDIS pricing. This pricing framework will play a pivotal role in ensuring the sustainability, equity, and effectiveness of the NDIS.

RVA attended several IHACPA stakeholder engagement sessions, including one specifically addressing the unique needs of participants in regional, rural, and remote areas. We emphasised the importance of a pricing structure that accommodates the diverse and often complex disability-related support needs of Australians living with a rare disease, many of whom face compounded challenges in accessing appropriate and timely supports. Key recommendations made by RVA aim to address systemic inequities, workforce sustainability, and innovation in service delivery while aligning with person-centred, equitable, and sustainable principles.

RVA’s Submission emphasised that future pricing must be person-centred, equitable, and sustainable, aligning with both the Australian Government’s National Strategic Action Plan for Rare Diseases and IHACPA’s principles. RVA supports harmonisation across the care and support sectors (NDIS, aged care and veteran’s care) while maintaining the individual intensive and complex disability support needs of rare disease NDIS participants and their families. Download our NDIS Pricing and Funding Arrangements from RVA’s website.