Rare Voices Australia Disability Advocacy Update: March 2024

RVA 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.