As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) has lodged a submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (the Bill).
RVA supports measures that strengthen the integrity and long-term sustainability of the NDIS. However, the Bill represents a fundamental shift away from the NDIS’ rights‑based, individualised design toward a more standardised and capped service model. This model can only work if adjacent systems are strengthened to absorb displaced needs and costs.
RVA Does Not Support the Passing of This Bill as Drafted
The proposed reforms will disproportionately disadvantage people with rare disease disability whose needs are often more complex, multi-system, progressive and highly individualised.
RVA is particularly concerned the Bill will result in:
- Reduced parliamentary oversight of key funding and policy decisions.
- Weaker procedural fairness and review safeguards for participants.
- Eligibility criteria based on standardised functional assessments that do not reflect complexity or real‑world functioning.
- Exclusion of comorbid and non-qualifying impairments from funding consideration.
- Reliance on foundational supports that are not yet fully established.
- Reduced flexibility in planning, reassessment and responsiveness to change.
- Evidentiary requirements that are not fit-for-purpose in a rare disease disability context embedding existing systemic inequity.
These reforms risk underestimating need, compromising participant safety and wellbeing and shifting cost to already overwhelmed families.
RVA’s Recommendations
RVA is calling on the Senate Community Affairs Legislation Committee (the Committee) to safeguard people living with rare disease disability and their families and carers. Download a copy of RVA’s submission. RVA is hoping to be invited to speak at the public hearing.
About Rare Voices Australia
RVA continues 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.
