Author: Sarah Cannata

Rare Voices Australia (RVA) is preparing for our annual Strategy Review session in July where, as an organisation, we discuss our focus areas and priorities for the future. RVA is asking all stakeholders in the rare disease sector for their input ahead of our Strategy Review meeting. Your responses will be considered and assist in informing RVA’s priorities in 2024 and beyond. The survey will take approximately 10 minutes to complete. Complete the survey via Survey Monkey.

Last night (Tuesday, 14 May), the Hon Dr Jim Chalmers MP (Treasurer of Australia) handed down the Albanese Government’s 2024-2025 Federal Budget. Reviewing the Federal Budget to identify any relevant measures for the rare disease sector has taken some time – there is some good news but work is still needed in some areas.

Rare Voices Australia (RVA) welcomes the Australian Government’s investment of $25 million to support the continued delivery of newborn bloodspot screening (NBS) expansion and consistency of conditions. As outlined in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), early diagnosis is critical in rare disease for better outcomes as it enables the best immediate treatment and care.

RVA was also pleased to see the inclusion of $2.6 million in 2024–2025 to support patient care improvement and general practitioner services, health professional education, condition awareness and digital resources for childhood dementia, juvenile arthritis, stroke, rare diseases and epilepsy.

As the national peak body for Australians living with a rare disease, RVA lodged a Pre-Budget Submission that aligns with the priorities, actions and implementation steps outlined in the Action Plan to accelerate its collaborative implementation. This included funding for Centres of Expertise (CoE) through a competitive workforce grant to develop and accelerate models of expert rare disease care. CoE and a sustainable workforce are critical to addressing gaps in rare disease care and are also key to ensuring that the full benefits of the NBS can be experienced, addressing significant unmet needs and gaps across the rare disease community. We are disappointed that this priority for the rare disease sector did not receive funding.

RVA will continue working with all Australian governments to advocate for the best outcomes for the estimated two million Australians living with a rare disease starting with several political and departmental meetings in Canberra this week.

RVA also attended the Department of Health and Aged Care’s post-Budget webinar and Q&A today (Wednesday, 15 May) with the Hon Mark Butler MP, the Hon Anika Wells MP, the Hon Ged Kearney MP, the Hon Emma McBride MP and Senator the Hon Malarndirri McCarthy. The session was facilitated by the Secretary of the Department of Health and Aged Care, Blair Comley PSM.

On Tuesday 16 April, Rare Voices Australia (RVA) convened a virtual roundtable to explore two important areas of proposed changes to the National Disability Insurance Scheme (NDIS):

• Draft Legislation – National Disability Insurance Scheme Amendment Bill 2024

On 27 March 2024, the Hon Bill Shorten MP tabled draft legislation, the NDIS Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) to amend the NDIS Act 2013 to ensure sustainability and to reflect recommendations from the NDIS Independent Review. The Bill has been referred to the Community Affairs Legislation Committee for inquiry and report by 20 June 2024. Submissions are due by 17 May 2024.

• National Disability Insurance Scheme Provider and Worker Registration Taskforce

The NDIS Review recommended a 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.

RVA was delighted to have 15 RVA Partner groups/organisations (rare disease groups/organisations) join in on a productive and engaging session, focused on examining the systemic issues experienced by NDIS participants living with a rare disease, and proposing solutions to improve both outcomes and experiences.

The session was facilitated by RVA’s Disability Advocacy Manager, Fiona Lawton. A PDF copy of the roundtable presentation is available. Download the PDF.

RVA will provide a written submission to the Taskforce (due 7 May 2024) as well as a detailed response to the draft legislation to the Community Affairs Legislation Committee in early May 2024.

National Disability Insurance Scheme Neurodegenerative Disorders and Palliative Care Working Group

Following several years of advocating to the National Disability Insurance Agency (NDIA), RVA is pleased to be invited to join the newly created NDIS Neurodegenerative Disorders and Palliative Care Working Group (N&PWG). The NDIS states that it “… recognises the unique and often progressive needs of people with neurodegenerative or neuromuscular or rare conditions, including those requiring palliative care, and the complexity faced in navigating multiple services and systems.”

The N&PWG aims to provide strategic advice to the NDIS on a set of defined issues relating to neurodegenerative, neuromuscular, palliative care, and rare conditions, including:

• Challenges with accessing the NDIS and timely decisions where functional impairment can progress rapidly
• NDIA staff and partners in the community have insufficient knowledge regarding rare conditions and disorders
• Synchronisation of planning where multiple family members are impacted with the same condition
• The intersection of the NDIS with other mainstream and informal supports, including health

The N&PWG will meet bi-monthly with the first meeting being held virtually on 23 May 2024 to examine the Draft Terms of Reference.

RVA will be represented by Fiona Lawton. Fiona will continue to engage with RVA Partner groups/organisations and people living with a rare disease and their families to ensure the most appropriate representation at the N&PWG.

Rare Voices Australia (RVA) is the national peak body for the estimated two million Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for Australians living with a rare disease. The organisation’s person-centred focus sees RVA working with key stakeholders in the rare disease sector, including people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry.

Rare Voices Australia’s Vision

RVA is dedicated to working with all key stakeholders to drive the best outcomes for Australians living with a rare disease.

Rare Voices Australia’s Mission

RVA provides collaborative leadership for the development and implementation of rare disease policy in Australia.

Governance

RVA is governed by an independent Board of Directors and a comprehensive Constitution. Several board members have a personal connection with a rare disease and members are based around Australia. All directors and the Chair are required by legislation to hold a director identification number (DIN) available through the Australian Business Registry Services.

RVA’s Board of Directors preside over an Annual General Meeting in the last quarter annually. In accordance with the Australian Securities and Investment Commission (ASIC) and in compliance with a registered Company Limited by Guarantee (ABN 69 156 254 303), RVA’s financials are audited by a registered Company Auditor. Annual Reports are submitted and publicly disclosed with ASIC and the Australian Charities and Not-for-Profits Commission (ACNC). RVA is a registered charity, endorsed with Deductible Gift Recipient (DGR) status.

Rare Voices Australia’s Work

RVA’s work is informed by the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan), which was launched by the Minister for Health in 2020 with bipartisan support. The Action Plan is the first nationally coordinated effort to address rare disease in Australia and includes three interrelated pillars:

1. Awareness and Education
2. Care and Support
3. Research and Data

In 2018, the Australian Government commissioned RVA to lead the collaborative development of the Action Plan as the national peak body for Australians living with a rare disease. RVA is now leading the Action Plan’s collaborative implementation.

Scientific and Medical Advisory Committee

RVA’s Scientific and Medical Advisory Committee provides the organisation with medical and clinical perspectives, guidelines and information as needed.

Rare Voices Australia Is Seeking Applications for Non-Executive Board Directors

RVA’s Board of Directors is seeking to appoint up to three Directors. Alongside existing Directors, the appointees will contribute to RVA’s vision to advocate for the best outcomes for Australians living with a rare disease.

Please note: this is a voluntary position.

Applications

Applicants are required to provide a CV and brief response (no more than one page) to the criteria outlined in the Position Description. Please be sure to read the full Position Description before applying. Applications close at 5pm AEST on 10 June 2024.

Download the full Position Description (PDF)

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.

Rare Voices Australia (RVA) thanks everyone who attended our 2024 Rare Disease Day Parliamentary Event in Canberra on the rarest day of the year (29 February). Hosted by the Parliamentary Friends of Rare Diseases, the event theme was Progress Beyond Policy.

Read the speech delivered by RVA’s Chief Executive Officer, Nicole Millis.

Guests also heard about Rare Disease Centres of Expertise and Australia’s first National Recommendations for Rare Disease Health Care (the Recommendations), which launched on Rare Disease Day. The Recommendations were written to help health professionals provide quality care for people living with rare disease, including people with a diagnosed rare disease and those who have not yet received a diagnosis.

Acknowledgements

Thank you to the following Members of Parliament who spoke at RVA’s biggest-ever Parliamentary Event and who continue to show their support for the estimated two million Australians living with a rare disease:

• Mark Butler MP, Minister for Health and Aged Care
• Senator Anne Ruston, Shadow Minister for Health and Aged Care
• Dr Monique Ryan, Co-Chair, Parliamentary Friends of Rare Diseases and Member for Kooyong
• Dr Mike Freelander MP, Co-Chair, Parliamentary Friends of Rare Diseases and Member for Macarthur
• Senator Wendy Askew, Co-Chair, Parliamentary Friends of Rare Diseases and Senator for Tasmania

We also thank our other speakers:

• Dr (Elizabeth) Emma Palmer, senior clinical lecturer at University of New South Wales, Sydney, and leading co-author of the Recommendations
• Dr Falak Helwani, Research and Evaluation Manager, RVA

Special thanks to the RVA Board Directors and Scientific and Medical Advisory Committee members who joined us on Rare Disease Day. We also thank our RVA Ambassadors.

The Importance of Rare Disease Day

Rare Disease Day is an opportunity to celebrate all we have achieved as a sector and consider how we can continue building on the momentum already generated to accelerate progress beyond policy, while maintaining a person-centred approach as the ongoing implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) continues.

Action Plan implementation requires ongoing multi-partisan collaboration and support, and RVA looks forward to continuing to advocate for the best outcomes for Australians living with a rare disease.