Rare Disease Disability Advocacy Update: September 2026
Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in National Disability Insurance Scheme (NDIS) reform activities, disability policy development, consultation processes and cross-sector leadership forums.
National Disability Insurance Scheme Engagement Activities
Support Determinations, Plan Reassessments and Safeguarding
RVA participated in several National Disability Insurance Agency (NDIA) stakeholder engagement workshops relating to the implementation of the new Support Determination processes, plan reassessment pathways and the implementation of the High Support Needs Plan Variation process.
Throughout these discussions, RVA emphasised the need for Support Determination processes to ensure safeguards and protections for participants with:
- High-intensity and rare disease disability-related health support requirements
- Progressive and degenerative rare diseases
- 24/7 support needs who are not currently funded for round-the-clock support
- Significant health and safety implications if supports are disrupted
- Informal carers and family supports who may be negatively impacted by these changes
RVA advocated for urgent review pathways when rare disease progression results in significant changes to support needs.
Rare Disease Disability Snapshots
RVA is developing a series of Rare Disease Disability Snapshots to help NDIA policymakers, planners and Support Needs Assessors better understand rare disease disability. We are also working with RVA Partner groups/organisations to develop and review rare disease-specific snapshots.
Disability Representative and Carer Organisation Activities
RVA participated in Disability Representative and Carer Organisation (DRCO) activities meetings and related disability reform discussions with the NDIA. Key topics included implementation of NDIS reforms, planning pathways, participant safeguards and workforce capability initiatives.
National Disability Insurance Scheme Pricing Roundtable: Markets and Safeguards
RVA participated in a stakeholder roundtable examining NDIS pricing, market sustainability and participant safeguards. Discussions focused on how pricing settings influence workforce availability, provider sustainability and access to specialised supports.
RVA highlighted longstanding challenges experienced by people living with rare disease disability, including workforce shortages, limited provider availability, complex support requirements, and safeguards to ensure access to specialised, high-quality supports.
RVA will continue advocating for market settings that support equitable access.
Submission: Supported Independent Living Commissioning
RVA submitted a response to the Department of Health, Disability and Ageing’s consultation on a possible commissioning approach for part of the Supported Independent Living (SIL) market. Read RVA’s submission.
Presentation: Disability and Health Sector Consultation Committee Presentation
RVA presented to the Australian Government’s Disability and Health Sector Consultation Committee on Rare Disease Disability: Why It Matters. We highlighted the significant intersection between rare disease and disability, noting that approximately 70% of rare diseases begin in childhood and many are associated with lifelong, complex and substantial disability. RVA reinforced the need for disability systems to better recognise the complexity and cumulative impacts experienced by people living with rare disease disability.
National Disability Insurance Scheme Functional Capacity Assessment Framework Engagement
RVA met with the Department of Health, Disability and Ageing’s NDIS Policy Branch regarding ongoing work supporting the Technical Advisory Group (TAG) for NDIS Functional Capacity. The TAG is providing advice to government on the development of a consistent and evidence-based approach to assessing substantially reduced functional capacity for NDIS access.
RVA briefed the Department of Health, Disability and Ageing on the potential implications and limitations of standardised functional capacity assessments for people living with rare disease disability. RVA continues to advocate for an assessment framework anchored in functional capacity such as the World Health Organization’s International Classification of Function (ICF) while incorporating rare disease expertise, specialist evidence, standards of care and condition-specific knowledge.
Aviation Disability Standards Consultation
RVA participated in a consultation regarding proposed Aviation Disability Standards currently being developed by the Australian Government. The proposed standards aim to improve accessibility across the air travel journey. RVA’s contribution draws on sector feedback and insights gathered through the development of the Navigating Air Travel with Rare Disease Disability Toolkit resources.
