Rare Disease Disability Advocacy Update: October 2024

RVA News

Rare Voices Australia (RVA) continues our systemic advocacy for the estimated two million Australians living with a rare disease, the majority of whom meet the Australian Government’s definition for disability. RVA estimates that over 100,000 National Disability Insurance Scheme (NDIS) participants live with a rare disease comorbidity.

With so much going on in disability reform, RVA would like to highlight two resources released recently, which are designed to help the sector and people living with disability stay abreast of the government’s disability reform activities and consultation opportunities.

1. Disability Reform Roadmap (Disability Ministers Reform Council)

The Disability Reform Roadmap highlights the key actions all governments will take in 2024 and 2025 to build the foundations and deliver on the commitments for disability and NDIS reform. It includes the responses to the NDIS Review, implementation of Disability Royal Commission regulations and review of Australia’s Disability Strategy.

2. National Disability Insurance Scheme Commission’s Regulatory Reform Roadmap

The NDIS Commission’s Regulatory Reform Roadmap lays out the timetable for regulatory changes to improve the quality and safety of support being delivered to NDIS participants.

Important Dates for the Rare Disease Sector to Be Aware Of:

  • 3 November – Engagement regarding the final draft of the National Carer Strategy document closes
  • 6 November – NDIS Pricing Review: Rural, Regional and Remote
  • 30 November – Engagement on the Foundational Supports (General) closes

October Highlights: Rare Disease Disability Advocacy

National Disability Insurance Scheme Rare Disease Disability Dashboard

RVA’s collaboration with the NDIS Scheme Actuary continues to progress the development of the Rare Disease Disability Dashboard report, which aims to improve data visibility and understanding of rare disease disability impacts within the NDIS. This initiative marks an essential step in identifying specific needs across these diverse groups and will enhance RVA’s capacity to advocate for effective, data-driven support models for people living with rare diseases. RVA will continue to work with the NDIS and RVA Partners to improve data capture and reporting for rare disease disabilities.

National Disability Insurance Scheme Workforce Capability and Culture Co-Design Working Group

RVA was pleased to be invited to participate in the NDIS Workforce Capability and Culture Co-Design Working Group. This multi-stakeholder group includes Disability and Carer Representative Organisations (DCROs), NDIS managers and leaders, and people with disabilities. RVA’s advocacy within the group focuses on ensuring that NDIS staff are trained to understand the complexities of rare diseases.

National Carer Strategy

RVA is contributing to the final review of the National Carer Strategy document and is urging the Department of Social Services (DSS) to incorporate RVA’s feedback in the final National Carer Strategy to ensure a comprehensive support framework for rare disease carers.

Foundational Supports Strategy

The consultation process for the Foundational Supports Strategy for General Supports is underway and open until 30 November 2024. This initiative is designed to bridge support for individuals who do not meet NDIS eligibility and is focused on navigational support to provide people with disability information, capacity building and advocacy skills to connect with mainstream and community services.

On 23 October, RVA met with The Social Deck to highlight the core issues impacting the rare disease disability community. RVA’s advocacy focus aims to ensure that foundational supports include sustaining rare disease peer support networks, reflect the specialised needs of people with rare diseases, and that these supports are adequately resourced and sustained, and accessible in regional, rural and remote areas.

As part of our submission to DSS Foundational Supports, we want to highlight existing rare disease programs and resources that help people living with rare disease and their families/carers to connect with services and supports.  Please email [email protected] if you would like to contribute to this Submission.

As disability reform progresses, RVA remains committed to advocating for a responsive, transparent, and inclusive system that genuinely supports the rare disease community.