National Disability Insurance Scheme (NDIS) Advocacy Update: August 2023

RVA News

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) is continuing our National Disability Insurance Scheme (NDIS) advocacy to address systemic issues and gaps for people living with a rare disease who are also NDIS applicants or participants.

RVA is recognised by the National Disability Insurance Agency (NDIA) as a key peak body, and in that capacity, is meeting monthly with the NDIA’s stakeholder engagement team to discuss opportunities for co-design and consultation with the NDIA.

Significant work is needed to contribute to the systemic changes required for the NDIS to better respond to the needs of Australians living with a rare disease. To assist, RVA has engaged Fiona Lawton to provide expert input and additional advocacy capacity. Fiona is well known to many in the rare disease community in her capacity as President of RVA Partner, Angelman Syndrome Association Australia, and is recognised for her extensive knowledge of the NDIS and expert understanding of legislation. Fiona’s drive and expertise has strengthened and progressed the advocacy priorities identified by RVA Partners (rare disease groups/organisations).   

Disability Representative and Carer Organisations (DRCOs)

Our meetings with the stakeholder engagement team have led to discussions with the NDIA regarding the possibility of RVA joining the group of 27 peak bodies that form the Disability Representative and Carer Organisations (DRCOs). The DRCOs are part of the ‘Co-design Advisory Group,’ which was established in 2021, and includes the NDIS Independent Advisory Council (the Council), the Department of Social Services (DSS), NDIA board members and senior executives.

On 4 August 2023, the DRCOs and the Council met to discuss the Australian Government’s range of key reforms to improve the outcomes for people with a disability and help secure the ongoing sustainability of the NDIS. This new initiative, known as the ‘Reform for Outcomes Program,’ consists of working groups to explore workforce capability, better planning, flexibility, independent living, evidence-based supports and fraud. Several of these key areas are identified as priorities in the Australian Government’s National Strategic Action Plan for Rare Diseases, including workforce capability, better planning and evidence-based supports.

In August, RVA’s Chief Executive Officer, Nicole Millis, met with the Minister for the NDIS, the Hon Bill Shorten MP’s office, to highlight the importance of RVA’s involvement in any co-design activities, including the Reform for Outcomes Program. This will ensure that the needs of the estimated two million Australians living with a rare disease are reflected in future policy, strategy and practice. As the national peak body for Australians living with a rare disease, RVA continues to advocate to be included in current and future co-design activities and is making direct applications to several DRCOs to ensure that the needs of Australians living with a rare disease are considered. At this stage, it is still unclear if any DCROs would be able to effectively represent Australians living with a rare disease, due to their membership criteria and current priorities.

National Disability Insurance Scheme Independent Review

In June, RVA provided a detailed 17-page Submission to the NDIS Independent Review, which contained insights from the workshops RVA facilitated throughout 2021 and 2022 with several RVA Partner groups/organisations and the NDIA. RVA’s Submission also incorporated insights from ongoing discussions with the broader rare disease community. The NDIS Independent Review was established by Minister Shorten in October 2022 and has received over 2,500 submissions to date. The Independent Review Panel reports to the National Cabinet and will make findings and recommendations to the Disability Reform Ministerial Council (DRMC), which consists of Commonwealth, state and territory ministers with responsibility for disability policy. At this stage, RVA has been told the findings and recommendations will be made available in late 2023.

Download RVA’s Submission (PDF).

RVA was invited to meet with the NDIS Review Secretariat on 24 August 2023 to discuss how several of the recommendations contained in our Submission could be implemented. This was a positive and encouraging discussion.

RVA’s Submission was also provided to the Shadow Minister for the NDIS, the Hon Michael Sukkar MP, at a small group meeting on 15 August 2023 to discuss the current challenges and opportunities facing the NDIS.

Final submissions to the NDIS Independent Review are due by 1 September 2023, after which public submissions, including RVA’s Submission will be available on the NDIS Review website. A formal report will be provided to the Disability Reform Ministers Council in October 2023 for consideration. RVA has expressed our strong desire to participate in the co-design and implementation of the recommendations put forward in our Submission.


RVA thanks Louise Healy, RVA’s Education and Advocacy Manager, and disability projects liaison, Fiona Lawton, for leading this work on behalf of RVA.