Rare Disease Disability Advocacy Update – August 2025
Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability.
You can read about the Rare Disease Disability Project at RVA’s website. We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme (NDIS).
Political and Departmental Meetings
RVA’s Chief Executive Officer, Nicole Millis, and Louise Healy, our Education and Advocacy Manager, were in Canberra in August for several political and departmental meetings. They met with several rare disease disability-related parliamentarians and offices, including:
- Senior advisers from the Hon Mark Butler MP’s office. Minister Butler is the Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme (NDIS)
- An adviser from Senator the Hon Anne Ruston’s office. Senator Ruston is the Shadow Minister for Health and Aged Care and Shadow Minister for Disability and the NDIS
- Senator the Hon Jenny McAllister, Minister for the NDIS
- Dr Mike Freelander MP, Member for Macarthur and Chair of the Standing Committee on Health, Aged Care and Disability
- Dr Monique Ryan MP, Member for Kooyong and Deputy Chair of the Standing Committee on Health, Aged Care and Disability
- Senator Jordon Steele-John, Senator for Western Australia
- Senator Wendy Askew, Senator for Tasmania
Nicole and Louise will also be meeting with Minister Butler in early September.
Aviation Disability Standards
RVA has been actively involved in the Australian Government’s codesign process for the new Aviation Disability Standards, led by the Department of Infrastructure, Transport, Regional Development, Communications and the Arts (the Department).
As the national peak body for Australians living with a rare disease, RVA continues to advocate for inclusive and equitable transport systems that reflect the diverse needs of people with rare disease disability. RVA joined people living with disability and peak disability organisations, including the Australian Federation of Disability Organisations (AFDO) and People with Disability Australia (PWDA), in the Aviation Disability Standards co-design workshops. These workshops consisted of two virtual sessions in July and August and an in-person workshop at Sydney Airport on 12 August 2025. RVA’s participation ensured that the lived experiences of people with rare disease disability are considered in shaping aviation policy and practice.
RVA was pleased that the Hon Catherine King MP, Minister for Infrastructure, Transport, Regional Development and Local Government, and Senator the Hon Jenny McAllister, Minister for the NDIS, also attended the Sydney workshop.
The Aviation Disability Standards aim to:
- Eliminate barriers to air travel for people with disability
- Introduce new requirements for staff training, wayfinding, and accessible information
- Ensure airlines and airports coordinate services to support passengers with disability
- Consider banning policies that limit the number of passengers needing assistance on a flight
- Introduce passenger assistance profiles to streamline support
The Department will consult with airlines, airports, and industry bodies before launching a formal public consultation in late 2025. RVA will continue to engage with stakeholders and share updates as the process unfolds. For more information, visit the Department’s Aviation Accessibility page.
Disability Discrimination Act Review
RVA was pleased to participate in the Disability Discrimination Act (DDA) Review consultation held in Brisbane on Thursday 28 August. Led by the Attorney-General’s Department and hosted by The Social Deck, the consultation brought together people with disability, advocates, and organisations to provide feedback on how the DDA can better protect and promote the rights of people with disability.
RVA’s involvement ensured that the perspectives of people living with rare disease disability were represented in discussions about legal protections and systemic reform. We thank the organisers for facilitating a collaborative and inclusive consultation process.
Queensland Disability Conference
RVA will attend the 2025 Queensland Disability Conference, Unlocking Potential: Reforms, Innovation and Inclusion, on Friday 29 August in Brisbane.
Hosted by the Queenslanders With Disability Network (QDN) and the Department of Families, Seniors, Disability Services and Child Safety, the conference is scheduled to be opened by the Hon Amanda Camm MP, Minister for Families, Seniors, and Disability Services and Minister for Child Safety and the Prevention of Domestic and Family Violence. The conference will feature discussions on disability rights and reforms, employment and social impact, and what disability inclusion looks like for the 2032 Olympics being held in Brisbane.
