As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) acknowledges the Australian Government’s intent to strengthen the integrity and long-term sustainability of the National Disability Insurance Scheme (NDIS).
On 22/4/2026, the Hon Mark Butler MP, Minister for Disability and the NDIS and the Minister for Health and Ageing, addressed the National Press Club and issued a media release. Significant changes to the NDIS have been outlined, including measures to address fraud, cost growth and market failure. These objectives are understood and broadly supported by RVA.
However, the impact of the proposed reforms on people with rare, complex and lifelong disabilities will depend on how they are designed, sequenced and implemented. Sustainability cannot be achieved if cost containment becomes the practical driver of reform without sufficient attention to complexity, rarity, geography and cumulative health and disability impacts. We know that there are already existing barriers for priority populations, including people living in regional, rural and remote areas, Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse communities.
Eligibility and Functional Assessments
RVA supports a diagnosis-agnostic approach to NDIS access. However, rare disease disability is frequently multi‑system, episodic, fluctuating, degenerative or progressive, and is not well captured by standardised functional assessment tools alone.
Diagnosis, where known, remains a critical source of context for understanding complexity, anticipating functional impact over time and interpreting cumulative impairment. Removing this lens without strong safeguards risks systematically disadvantaging people with rare disease disability.
The establishment of a Technical Advisory Group is a positive step. Equitable outcomes will depend on the meaningful inclusion of rare disease disability expertise and lived experience in assessment design, testing and governance.
Boundaries with Mainstream Systems
Proposals to reinforce boundaries between the NDIS, health and other mainstream systems pose long-standing risks for people with rare disease disability. Many require lifelong health and disability support concurrently, depend on supports that do not sit neatly within service definitions, and rely on intensive care coordination across fragmented systems.
Further tightening these boundaries without parallel reform and adequate resourcing of mainstream services risks increasing service gaps and heightens the risk of postcode-based disability outcomes.
Planning, Reassessment and Support Coordination
Rare disease disability often involves incremental and non-linear change that does not align with rigid reassessment frameworks and timetables. Changes to planning processes, removal of plan rollovers and tighter reassessment thresholds increase administrative and evidentiary burden for families managing complex care.
At the same time, proposed redesign and commissioning of support coordination and plan management place essential safeguards for complexity at risk. For people with rare disease disability, these functions provide critical infrastructure, and if not managed well, risks shifting responsibility and risk onto families and unpaid carers.
Participation Funding and Caregiver Impact
Projected reductions in social and community participation funding are likely to disproportionately affect people with rare disease disability, whose participation in education, employment, recreation and inclusive community life often depends on higher cost, highly trained health‑aware disability supports.
RVA is deeply concerned that any blanket contraction in this funding will result in unmet need transferring to unpaid carers, contributing to carer workforce withdrawal, loss of respite, increased burnout and higher long‑term system costs. Community grant programs are unlikely to substitute for tailored, health‑informed and life‑sustaining supports required by people with intensive and complex rare disease disability.
Participation reforms must be risk-proportionate and codesigned with RVA and the rare disease disability community to avoid further exclusion.
Regional, Rural and Remote Australia
Expanded mandatory provider registration may improve safeguarding in some settings, but carries particular risk in regional, rural and remote areas where markets are already thin, particularly for participants with rare disease disability. Registration that results in the exit of small, specialist or sole‑trader providers risks collapsing entire support arrangements for vulnerable participants unless active market stewardship is in place.
The Importance of Ongoing Rare Disease Disability Advocacy
RVA supports reforms that strengthen the safety, integrity and long-term viability of the NDIS. We are committed to working constructively with the Australian Government to co-design this next, critical chapter of the NDIS. Embedding rarity, complexity and geography into reform design, implementation and governance is essential if the NDIS is to continue serving the people it was established to support.
About Rare Voices Australia
RVA is the national peak body for Australians living with a rare disease. We continue to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives. RVA is:
- A member of the Disability Representative and Carers Organisations (DRCO) Forum. DRCOs work closely with the National Disability Insurance Agency (NDIA) on reforms, changes and improvements to the NDIS. We are participating in the next quarterly DRCO Forums to advocate for the estimated two million Australians living with a rare disease, nearly all of whom experience long-term impacts daily—impacts that meet the Australian Government’s definition of a disability.
- A member of the Neurodegenerative Palliative Care and Rare Conditions Advisory Group (NPRAG) to the NDIS.
- Leading the Rare Disease Disability Project. We are proudly delivering projects for the Peer Support and Capacity Building grant for the NDIS.
