Rare Disease Disability Advocacy Update: August 2026

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in disability reform activities with the Department of Health, Disability and Ageing, National Disability Insurance Scheme (NDIS) consultation processes, sector leadership forums, research collaborations and community education initiatives.

NDIS Legislation Passed: Advocacy Matters

August marked a significant milestone in NDIS reform, with the NDIS Amendment (Securing the NDIS for Future Generations) Act 2026 passing through the Australian Parliament.

Throughout the reform process, RVA lodged two submissions to the Senate Inquiry, and met with parliamentarians to advocate for improvements to the Bill. RVA commends the contributions of our RVA Partner groups/organisations and people living with rare disease disability who made submissions and presented powerful testimony at Senate Inquiry public hearings. These collective advocacy efforts contributed to the 32 additional amendments secured through the Senate, including important safeguards relating to high support needs, disability-related health supports and access to 24/7 supports for people with complex needs.

RVA is now focused on implementation, working closely with the Department of Health, Disability and Ageing and the National Disability Insurance Agency (NDIA) to ensure the legislation is translated safely and effectively. This includes safeguarding access to essential supports for NDIS participants living with rare disease disability.

RVA raised these priorities through the NDIA Disability Representative and Carer Organisation (DRCO) Forum in August.

Details about the changes to the NDIS are available on the Department of Health, Disability and Ageing’s website.

The full timeline for implementation is also available on the Department of Health, Disability and Ageing’s website.

Several important consultations are now underway, including on the NDIS Support Lists, New Framework Planning and related NDIS Rules. Additional information is available through the Department of Health, Disability and Ageing’s consultation hub. The consultation closes on 14 October 2026.

NDIS Engagement Activities

RVA participated in several NDIA stakeholder engagement activities throughout August, including consultations on the NDIA’s New Engagement Framework and Early Childhood Intervention Market Analysis Project.

RVA also attended stakeholder sessions regarding the new Support Needs Assessment (SNA) framework. RVA continues to advocate for SNA tools, processes, assessor training and accreditation that appropriately recognise and respond to the complexity of rare disease disability, including progressive, fluctuating and multisystem conditions.

The NDIA is working with RVA and the Rare Disease Disability Network to identify NDIS participants with complex support needs to participate in paid targeted testing opportunities. This important activity will conclude by December 2026 ahead of the roll out of the New Framework Planning in April 2027. Learn how you can help shape the new SNA at RVA’s website.

DSC Annual NDIS Conference

RVA attended the DSC Annual NDIS Conference in Brisbane. The conference brought together more than 1,500 disability sector leaders, service providers, advocates and policymakers to discuss the ongoing NDIS reform agenda and the future direction of disability policy and practice in Australia. RVA thanks DSC for the opportunity to promote the Rare Disease Disability Toolkit at the conference.

Prader-Willi Syndrome Conference

RVA presented at the Prader-Willi Syndrome Conference in Brisbane, participating in a panel discussion on the NDIS reform agenda and highlighting how the Rare Disease Disability Toolkit’s self-advocacy resources can support better outcomes across the NDIS, healthcare and air travel.

Disability Policy and Research Roundtable

RVA attended a Disability Roundtable hosted by the University of Canberra Vice-Chancellor, Professor the Hon Bill Shorten, and the Young People in Nursing Homes National Alliance. The roundtable brought together disability sector leaders and researchers from several Australian universities to explore opportunities for stronger collaboration between the disability and research sectors. RVA welcomed the opportunity to contribute a rare disease disability perspective and support research partnerships that can strengthen evidence-based disability policy and improve outcomes for people living with rare disease disability.