Category: RVA News

In November, Rare Voices Australia (RVA) focused our disability advocacy efforts on the future pricing framework of the National Disability Insurance Scheme (NDIS). This work included extensive consultation with and lodging a Submission to the Independent Health and Aged Care Pricing Authority (IHACPA), which has been tasked with advising the Australian Government on options for the future operation of NDIS pricing. This pricing framework will play a pivotal role in ensuring the sustainability, equity, and effectiveness of the NDIS.

RVA attended several IHACPA stakeholder engagement sessions, including one specifically addressing the unique needs of participants in regional, rural, and remote areas. We emphasised the importance of a pricing structure that accommodates the diverse and often complex disability-related support needs of Australians living with a rare disease, many of whom face compounded challenges in accessing appropriate and timely supports. Key recommendations made by RVA aim to address systemic inequities, workforce sustainability, and innovation in service delivery while aligning with person-centred, equitable, and sustainable principles.

RVA’s Submission emphasised that future pricing must be person-centred, equitable, and sustainable, aligning with both the Australian Government’s National Strategic Action Plan for Rare Diseases and IHACPA’s principles. RVA supports harmonisation across the care and support sectors (NDIS, aged care and veteran’s care) while maintaining the individual intensive and complex disability support needs of rare disease NDIS participants and their families. Download our NDIS Pricing and Funding Arrangements from RVA’s website.

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) remains committed to advocating for people living with a rare disease, including those with disabilities. RVA estimates that 100,000 National Disability Insurance Scheme (NDIS) participants live with a rare disease comorbidity. The August Rare Disease Disability Advocacy Update focuses on the government’s response to the Disability Royal Commission (DRC), the NDIS reform agenda, and the evolving concerns within the rare disease community.

Government Response to the Disability Royal Commission

On 31 July 2024, Federal, state, and territory governments released their responses to the DRC’s recommendations.

The DRC made 222 recommendations for state and Federal governments to improve laws, education, employment, and housing options for people with disabilities, noting multiple failings to protect people with disabilities from human rights abuses, and breaching international obligations. Of the 222 recommendations, the Federal Government said 172 fell within its scope. It has accepted 13 recommendations in full and another 117 in principle. The Federal Government has identified another 36 for further consideration.

There has been widespread disappointment in the disability community regarding the government’s failure to fully commit to some of the most crucial recommendations. RVA is concerned about the lack of comprehensive legislative reform and that after nine months of consideration by governments, the systemic issues highlighted by the DRC may not be adequately addressed. Read RVA’s submission to the Disability Royal Commission.

Below is a high-level comparison of RVA’s key recommendations and how they were addressed by the government.

Summary:

Accepted in Full: Recommendations related to the cognitive disability health capability framework and the National Disability Data Asset.

Accepted in Principle: Recommendations related to the National Disability Commission, workforce strategy, and improved access to clinical placements.

Noted: The recommendations regarding the Disability Rights Act, strengthening the Disability Discrimination Act (DDA), and establishing a First Nations Disability Forum were acknowledged but not committed to.

Draft Lists of National Disability Insurance Scheme Supports

RVA has been actively engaged in the NDIS reform agenda in August.

As a member of the NDIS Neurodegenerative, Palliative and Rare Disease Advisory Group, RVA attended an out-of-session consultation on 16 August 2024 with leaders from the National Disability Insurance Agency (NDIA). RVA expressed our concerns regarding the brief consultation periods provided for crucial decisions about eligible supports under the NDIS.

We subsequently provided a detailed submission to the Department of Social Services (DSS) consultation on the draft lists of NDIS Supports and shared our submission with the NDIA. Download RVA’s submission.

Key issues highlighted in our submission include:

• The use of narrow and prescriptive lists in this complex disability ecosystem is problematic.
• Lack of time and planning for community/sector engagement and codesign to ensure the ‘transitional’ rules are appropriate.
• There continues to be a lack of authentic co-design with the disability sector.
• RVA requests that a Stakeholder and Community Engagement Plan be published.
• RVA also noted that the draft lists contain significant assumptions that the state and territory governments will agree to fund and provide foundational, mainstream, and community supports for people with disability in a way that meets their needs. Yet, we currently have no assurance they will do so.
• We are seeking urgent confirmation that where no mainstream service exists or is not practically available, or foundational supports are not yet implemented, the NDIS will continue to fund these reasonable and necessary supports to ensure no person with a disability goes without essential support.
• RVA remains deeply concerned about sections of the draft NDIS Supports List that refer to ‘Mainstream Health’ responsibilities that will not be considered NDIS Supports, including life-sustaining assistive technology for the management of disability-related health supports.

RVA remains deeply concerned about the implications of these developments for people living with rare diseases and disabilities. The potential for reduced services and stricter eligibility criteria under the NDIS could disproportionately impact our community, many of whom rely on comprehensive and tailored supports to manage their conditions.

RVA appreciates the insights and input from our RVA Partner groups/organisations (rare disease organisations), many of whom also provided detailed submissions for consideration. With the passing of the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024 on 22 August, RVA will carefully monitor the finalisation of these lists of NDIS Supports and actively seek to be part of the co-design process for the development of the suite of new NDIS Rules.

Foundational Supports

RVA continues to advocate for formal recognition and engagement as a Disability and Carer Representative Organisation to ensure the considerable and complex needs of people living with rare disease disability impacts are met.

RVA will continue to advocate for a more inclusive, transparent, and rights-focused approach to the NDIS and broader disability reforms. We are working closely with RVA Partner groups/organisations and other advocacy groups to ensure the voices of all people with rare disease disabilities are heard and considered in all policy discussions.

RVA was pleased to receive an in-person invitation to attend the Queensland Disability Conference on 16 August 2024 in Brisbane. We had the opportunity to engage with senior State and Federal Government advisors regarding the challenges of the rare disease community and the arbitrary line that is all too often drawn between disability and health sectors.

RVA will continue to engage with state governments to advocate for comprehensive disability reform through the development of the Foundational Support Strategy. We are actively engaging with government officials, policymakers, and other key stakeholders to emphasise the importance of co-designing reforms with the disability community. RVA will continue to submit formal responses to relevant consultations and work to extend these consultation periods to ensure meaningful input.

RVA encourages all members of the rare disease sector to remain informed about these developments and to actively participate in advocacy efforts. Your voices are crucial in helping to shape policies that affect the rare disease community.

Rare Voices Australia’s (RVA) Education and Advocacy Manager, Louise Healy, and Research and Evaluation Manager, Dr Falak Helwani, were delighted to attend the Human Genetics Society of Australasia’s (HGSA) 47^th Annual Scientific Meeting between 10 and 13 August 2024. The theme of the meeting was, Beyond Next Generation: The Future of Genomics. At the meeting, attendees heard from a variety of Australian and international experts speaking on topics ranging from emerging gene therapies and pharmacogenomics, to integrating genomics into medicine and novel approaches to genetic counselling. We also heard updates from several RVA research partners, including members of the GenSCAN Consortium.  

This year, HGSA donated booth space in the exhibitor hall to not-for-profit organisations, including RVA and RVA Partner Genetic Alliance Australia. RVA would like to thank the organisers for the opportunity to have a dedicated space to showcase RVA’s work and for encouraging delegates to visit and learn more about our work. Louise Healy was pleased to present RVA’s poster, Resources for People from Priority Populations Living with a Rare Disease: Lessons Learned and Gaps Identified, co-authored by Louise, Jess Brooklyn (RVA’s Education Project Officer) and Nicole Millis (RVA’s Chief Executive Officer). Louise also co-chaired one of the oral poster sessions.

RVA would like to congratulate our Scientific and Medical Advisory Committee (SMAC) members A/Prof Paul Lacaze and Dr Jane Tiller for their thought-provoking workshop on population genomic screening of adults for medically actionable conditions. Congratulations also to SMAC member, Dr (Elizabeth) Emma Palmer, for her presentation in the Australasian Association of Clinical Geneticists special interest group session, which brought attention to outcomes from the Rare Disease Awareness, Education, Support and Training (RArEST) Project, including the National Recommendations for Rare Disease Health Care, as well as the RARE Helpline and the Rare Awareness Rare Education (RARE) Portal.

Rare Voices Australia, with support from Western Australia’s (WA) Office of Population Health Genomics (OPHG), has progressed aspects of the Australian Government’s National Strategic Action Plan for Rare Diseases with a focus on mental health and wellbeing. Two Mental Health and Rare Disease fact sheets, customised for WA, are available to download. Please feel free to share these resources widely with your networks to help spread the word.

Download the Fact Sheets

Mental Health and Rare Disease fact sheet for consumers [PDF]

Mental Health and Rare Disease fact sheet for health professionals [PDF]

How the Fact Sheets Were Developed

The fact sheets were developed based on a rare disease and mental health and wellbeing landscape analysis combined with consultations with a wide range of stakeholders, including people living with a rare disease; rare disease groups/organisations; clinicians with rare disease expertise; mental health professionals; and WA based community organisations.

On 28 June 2024, Rare Voices Australia (RVA) was invited to a public hearing to present to the Joint Standing Committee on the National Disability Insurance Scheme (the Committee) regarding their Inquiry into the participant experience of people living in rural, regional and remote areas. This invitation was based on the strength of RVA’s submission to the Committee in February 2024. We thank the RVA Partner groups/organisations that contributed examples of their lived experience for the submission. Read the submission.

Fiona Lawton, RVA’s Disability Advocacy Manager, and Louise Healy, our Education and Advocacy Manager, represented RVA as the national peak body for Australians living with a rare disease. RVA remains concerned that some of the questions and comments from policymakers at the public hearing indicate an ongoing lack of understanding about the important link between rare diseases and disability, and most importantly, how this impacts a significant number of Australians living with a rare disease. (RVA estimates that 100,000 NDIS participants live with a rare disease comorbidity.) Certain questions displayed a very limited understanding of the arbitrary line policymakers often draw between health and disability supports, creating significant gaps in care and support for those with a disability caused by a rare disease. RVA attempted to raise these concerns during the public hearing. We have also responded to questions on notice regarding these matters, expressing our concerns and highlighting common experiences raised during our virtual roundtable engagement session in April 2024 with RVA Partner groups/organisations.

Public Hearing Hansard Transcript

You can read the questions and comments raised in the public hearing Hansard transcript. RVA believes our responses to the questions on notice will be published on the Inquiry web page.

Rare Voices Australia’s Ongoing Rare Disease Disability Advocacy

RVA will continue having robust discussions with the National Disability Insurance Agency, the Hon Bill Shorten MP, the Minister for the National Disability Insurance Scheme, and other policymakers to advocate for rare disease data collection and rare disease expertise to inform current reform activities and policy codesign.

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.