Rare Disease Disability Advocacy Update: October 2026

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through strategic disability policy advocacy, National Disability Insurance Scheme (NDIS) reform activities, government consultation processes and cross-sector leadership forums.

National Disability Insurance Scheme Access Reform and Functional Capacity Assessment Framework

RVA continued its advocacy regarding the proposed NDIS Access Framework and associated Functional Capacity Assessment Framework. We submitted a detailed response to the Department of Health, Disability and Ageing’s (DHDA) consultation on the NDIS Access Framework, highlighting the unique challenges faced by people living with rare disease disability. Read RVA’s Submission.

RVA attended the Ministerial NDIS Access Stakeholder Roundtable, hosted by Senator the Hon Jenny McAllister, Minister for the NDIS and Suzanne Orr MLA, Australian Capital Territory Minister for Disability, Autism and Neurodiversity. Disability sector representatives discussed implementation of the proposed NDIS Access Framework and future access arrangements with members of the Technical Advisory Group (TAG). RVA reinforced the need for access pathways that appropriately consider specialist evidence, condition-specific expertise and the lived experience of people living with rare disease disability.

RVA also met with the DHDA’s NDIS Strategy and Policy team, which supports the TAG, to discuss the development of the Functional Capacity Assessment Framework. Discussions included opportunities to better recognise rare disease disability through approaches informed by ORPHAcodes, functional capacity and specialist clinical evidence.

Support Determinations: Safeguards, Monitoring and Advocacy

A focus of RVA’s advocacy during October was the implementation of Support Determinations and the potential impacts on people living with rare disease disability. RVA released its Statement, New NDIS Changes May Disadvantage Australians Living with Rare Disease Disability, which highlights concerns about the cumulative impact of NDIS reform measures.

RVA also wrote to parliamentarians across the political spectrum to raise awareness of the potential impacts of Support Determinations and broader NDIS reforms on Australians living with rare disease disability.

Additionally, RVA continues to raise these issues through Disability Representative and Carer Organisation (DRCO) engagement activities with the National Disability Insurance Agency (NDIA), including implementation briefings and consultation sessions relating to NDIS funding and claiming arrangements.

RVA was selected to participate in the newly established DRCO Support Determinations Working Group that will provide stakeholder input into the implementation and monitoring of Support Determinations.

We also met with members from the DHDA’s NDIS Strategy and Policy team regarding the development of a risk assessment and monitoring framework for Support Determinations implementation. Discussions focused on potential impacts for participants with rare disease disability and high support needs, including effects on family carers.

These issues were also discussed through the Queensland Health and Disability Interface Advisory Group, where RVA highlighted the risk that inadequate disability supports may increase demand on hospitals, emergency departments and other health services for people living with rare disease disability.

New Framework Planning and Budgeting Reform

RVA provided a submission to the consultation on New Framework Planning and associated NDIS Rules. Read RVA’s submission. We also raised issues through DRCO consultation activities and implementation briefings relating to new funding, claiming and planning arrangements.

Disability Safeguards Reform

RVA continued its involvement in the DHDA’s Disability Safeguards consultation process, participating in Step 3 consultations alongside RVA Partners, Mito Foundation and Angelman Syndrome Association Australia.

The consultation provided an important opportunity to contribute a rare disease disability perspective to discussions regarding participant safeguards, risk identification, oversight mechanisms and protections for people with complex support needs. RVA reinforced the need for safeguarding arrangements that appropriately recognise disability-related health supports, communication needs and complex care requirements experienced by many people living with rare disease disability.

Disability Discrimination Act Consultation

During the 2025 Review of the Disability Discrimination Act, RVA participated in consultation workshops and lodged a submission advocating for stronger recognition of the experiences of people living with rare disease disability. The Attorney-General’s Department has now published RVA’s submission and a summary of the consultation process. Read the Attorney-General’s summary and submissions.