Category: Rare Disease Disability Project News

A comprehensive disability reform agenda is underway across Commonwealth and State Governments, including transformation of disability policy, which is being led by the Disability Reform Ministerial Council (DRMC).

This program of disability reform is guided by the commitments of the Australian Disability Strategy 2021-2031 (December 2021) and its supporting action plans, and has been instigated by the subsequent release of 222 recommendations in the Royal Commission into the Violence, Abuse, Neglect and Exploitation of People with Disability (Disability Royal Commission; 29 September 2023) and the National Disability Insurance Scheme (NDIS) Independent Review final report (NDIS Review, December 2023).

Government Response

The Federal Government is not expected to formally respond to the Disability Royal Commission (the Commission) and the NDIS Review until mid-2024, however, engagement with the disability community has commenced regarding the Commission’s recommendations. Ongoing review and monitoring of the NDIS also continues through the Joint Standing Committee on the NDIS.

Rare Voices Australia’s Disability Advocacy

In anticipation of this work and as the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) submitted a grant to be recognised as a Disability Representative Organisation (DRO) in November 2023. Organisations funded under the DRO grant opportunity participate in a range of engagement activities with the Australian Government to ensure that a diversity of voices are represented in decision-making, legislation, policy development and implementation of programs and policies that may affect people with disability.

The outcome of the grant application is still pending, however, RVA continues to actively engage on disability policy reform to ensure the experiences of people living with a rare disease are appropriately reflected.

• On 19 January 2024, RVA provided a Submission to the government’s engagement on the Disability Royal Commission highlighting the synergy and consistency between the goals and priorities of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) and the Disability Royal Commission’s recommendations, including its calls for collaborative policymaking, integrated care models, joint advocacy, enhanced data collection, and research initiatives.
  
• On 25 January 2024, RVA’s Disability Advocacy Manager, Fiona Lawton, attended the NDIS Review Town Hall event in Brisbane led by the NDIS Review Panel co-chairs, Professor Bruce Bonyhady AM and Lisa Paul AO PSM. A copy of the NDIS Review Town Hall presentation is available via the Department of Social Services’ website. The Hon Bill Shorten MP, Minister for the NDIS, spoke at length at the event.
  
• In February 2024, RVA was pleased to provide a detailed submission to the Joint Standing Committee on the NDIS on the NDIS participant experience in rural, regional and remote Australia – Parliament of Australia. You can read our Submission here. RVA thanks our RVA Partner groups/organisations that generously shared the experience of NDIS participants living with a rare disease in regional, rural and remote Australia, and everyone who lodged submissions.
  
• On 29 February 2024 (Rare Disease Day), RVA submitted an expression of interest to join the Disability Data Development Scoping Panel for the National Disability Data Asset, the Federal Government’s program to de-identified data from Australian, state and territory government sources to better understand the life experiences of people with disability. This aligns with Pillar 3 (Research and Data) of the Action Plan to ensure policy is informed by the comprehensive, high-quality collection, and effective use of rare diseases data, including for undiagnosed rare diseases.

Foundational Supports

In December 2023, State and Federal Governments committed to jointly commission Foundational Supports to expand disability services and supports to all Australians living with a disability, not only those receiving NDIS individualised support packages.

The Federal Government followed this commitment with an announcement on 30 January 2024 of a $11.6 million investment over two years to develop and implement the Foundational Supports Strategy. This work will be led by the Hon Amanda Rishworth MP, Minister for Social Services, in consultation with Minister Shorten.

Draft Legislation – National Disability Insurance Scheme Amendment Bill

On 27 March 2024, Minister Shorten tabled draft legislation—NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024—to amend the NDIS Act 2013 to ensure a fairer, sustainable and more equitable NDIS with rule changes phased in as they are developed through co-design with the disability sector. Minister Shorten’s speech is available via the Ministers for the Department of Social Services’ website.

Incorporating the Voice of People Living with a Rare Disease

RVA understands that the current DROs have been actively engaged in consultation regarding the draft legislation and will be core to the development of the Foundational Supports Strategy.

RVA has written to Minister Rishworth and Minister Shorten highlighting RVA’s key role in systemic advocacy for people living with a rare disease and disability impacts, and to request recognition and active engagement with RVA as a key stakeholder in all aspects of disability policy and strategy work.

RVA is also reviewing the draft legislation and will provide a written response to Minister Shorten for consideration.

National Disability Insurance Scheme Provider and Worker Registration Taskforce

The NDIS Review recommended graduated mandatory registration (or enrolment) of all NDIS providers. The Federal Government has appointed the NDIS Provider and Worker Registration Taskforce (the Taskforce) to provide advice on the design and implementation of the new risk-proportionate regulatory model. The Taskforce is seeking submissions until 28 April 2024.

Virtual Roundtable for Rare Voices Australia Partner Groups/Organisations

On Tuesday 16 April, RVA will be convening a virtual roundtable with interested RVA Partner groups/organisations to discuss what the proposed changes mean for the rare disease sector and will subsequently provide a Submission and request a meeting with the Taskforce. Please email your interest in attending the roundtable to [email protected] by Tuesday 9 April to receive the question pack and supporting documents ahead of the session.

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.

Acknowledgements

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