Action 2.1.5 Embed the voice of people living with a rare disease and their families and carers throughout structures and systems that impact rare diseases.
People living with a rare disease and their families also experience financial impacts, either due to out-of-pocket costs associated with care and support, or due to loss of income associated with taking on a carer role.
— National Strategic Action Plan for Rare Diseases p9
Implementation
2.1.5.1. Capture and promote the voice of people living with a rare disease and their families and carers by:
- involving people living with a rare disease at every level of decision-making;
- ensuring ongoing engagement to capture broader input from people living with a rare disease through surveys, focus groups, newsletters, and representation on boards; and
- calling for key structures and systems to routinely and effectively capture broader input from consumers, as done currently in some research settings and HTA (consumer hearings).
2.1.5.2. Enhance culturally safe and appropriate approaches for Aboriginal and Torres Strait Islander people, including aligning with existing initiatives to develop and implement ways to integrate Indigenous Australian languages to equitably enhance care and support.
Action 2.5.1 Ensure people living with a rare disease, including their families and carers, receive the community, clinical and digital mental health supports and services they need.
The experience of socio-economic disadvantage can have significant, cumulative effects on a person’s health and wellbeing, including their ability to access and maintain engagement with services. Many people living with a rare disease, including families and carers, report psychological, emotional, and financial impacts.
— National Strategic Action Plan for Rare Diseases p14
Implementation
2.5.1.1. Enable people living with a rare disease, including their families and carers (with appropriate consent) to access information and resources (including digital) customised for rare diseases as part of Chronic Disease Management Plans and Mental Health Care Plans
RVA’s Submission
In preparing this Submission, RVA engaged with our RVA Partners (rare disease groups/organisations), individuals, and families/carers living with a rare disease. Their observations, concerns, and recommendations are reflected in this Submission and quotes are included.
RVA supports the need for a streamlined and coordinated approach to meeting the needs of carers and welcomes the development of the Australian Government’s National Carer Strategy as the roadmap for strengthening the commitment of all Federal, State, and Territory governments to the well-being, employment, education, health (including mental health), social inclusion, and safety of Australia’s unpaid carers.
We also highlight some of the programs, initiatives, and resources that have been developed to support people living with rare disease and rare disease carers, for inclusion in the National Carer Strategy:
RARE Helpline - The RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease and their families/carers often face. The RARE Helpline is staffed by Rare Voices Australia personnel, including those with qualifications/training in psychology, social work, and Mental Health First Aid.
RARE Portal - The Rare Awareness Rare Education (RARE) Portal contains current, reliable and straightforward information and resources for all rare disease stakeholders customised for the Australian context. This includes resources for families and rare disease carers including information on mental health services and resources available in Australia.
RArEST Project - The Rare Disease Awareness, Education, Support and Training (RArEST) Project was an Australian government-funded collaboration between Rare Voices Australia (RVA), the University of New South Wales, the University of Western Australia and Macquarie University. The RArEST Project developed and delivered rare disease awareness resources, education, support, and training including:
Recognition of Unique Needs and Health Literacy Demands for Rare Disease Carers
Caring for individuals with rare diseases involves unique and intensive demands, including advanced health literacy, complex and specialised caregiving and medical support, and emotional resilience. Carers often perform complex medical tasks, including medication administration, tube feeding, and managing high-dependency care, and often lack adequate support.
While the Draft National Carer Strategy acknowledges the complexity of care roles generally, it lacks specific mention of the unique skills rare disease carers require, such as health literacy and specialised medical training.
Recommendation:
- The National Carer Strategy explicitly recognise the high level of health literacy and specialised caregiving responsibilities required for rare disease carers.
Tailored Respite Services for Rare Disease
Traditional respite services are often unsuitable for rare disease care recipients due to complex medical, communication and/or behavioural needs. Tailored respite services that are available both in the home and outside of the home will reduce burnout and support carer well-being while ensuring consistent care for loved ones.
Recommendations:
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Develop and fund flexible, in-home and out-of-home respite services tailored to the high-complexity, high-dependency needs of rare disease carers and multiple and dual-role carers, particularly in rural, regional and remote areas.
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Develop training for respite providers to effectively support people with rare, high dependency needs through collaboration with rare disease organisations.
Enhanced Mental Health and Psychosocial Support for Rare Disease Carers
Rare disease carers frequently experience isolation and unique stressors that are not adequately addressed in mainstream mental health programs. Multiple and dual-role carers need support systems that understand their compounded challenges and help them maintain emotional resilience.
While the Draft National Carer Strategy recognises the mental health impact of caregiving broadly and includes psychological support as a priority, rare disease-specific mental health resources, such as those addressing the unique stresses associated with complex, often progressive conditions, are not explicitly addressed.
Recommendations:
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Explicitly identify the mental health needs for rare disease carers, emphasising accessibility for multiple and/or dual-role carers.
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Fund tailored mental health programs that specifically address the unique psychological burdens of rare disease carers, including chronic stress, isolation, and anticipatory grief.
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Increase funding for rare disease-specific peer support networks in collaboration with RVA and its partners (rare disease organisations), including virtual support options to address geographical isolation.
Recognising Economic Contributions of Rare Disease Carers
The Draft National Carer Strategy makes brief mention of the integral role carers play in the nation’s health and social care systems, however RVA believes they offer crucial unrecognised contributions that translate into considerable financial benefits for governments, and the community as a whole.
For example, rare disease carers play a critical role in the broader healthcare ecosystem, providing complex care at home that prevents hospitalisations and mitigates healthcare costs. RVA believes it is important to recognise and quantify their contributions to support resource allocation that accurately and adequately reflects the full value of their caregiving.
Recommendation:
- Commission research to quantify the economic value of the support provided by rare disease carers and dual-role and multiple-role carers, including the contributions made through home-based medical care and its substantial cost savings to healthcare systems.
Financial and Employment Support for Rare Disease Carers
Rare disease carers, particularly carers with multiple and/or dual roles, face significant financial strain due to the unpredictability of health and disability care needs and personal health demands. Some rare disease carers need to reduce their work hours due to the high-dependency, intensive care needs of their loved one/s, including during palliative and end-of-life periods. Additional financial and employment supports will help alleviate economic hardship and support long-term financial security for rare disease carers.
Recommendation:
- Implement targeted financial support policies for rare disease carers including: a. Increase the Carer Payment and Carer Allowance for carers supporting individuals with high-dependency needs, and multiple and/or dual-role carers.
b. Introduce flexible employment policies, including enhanced carer leave, remote work options, and superannuation protections for carers who reduce their work hours due to caregiving.
Improved Data Collection and Representation of Rare Disease Carers
Data is essential to understanding the challenges rare disease carers face and ensuring tailored services. Targeted data collection will allow the strategy to evolve with a clearer understanding of rare disease carer needs, while helping to allocate resources effectively.
Recommendation:
- Incorporate specific data collection initiatives in the Carer Gateway and Survey of Disability, Ageing, and Carers (SDAC) to capture information on rare disease carers and dual-role carers, to identify gaps and areas for targeted improvement.
Awareness and Training for Health and Social Service Providers
Rare disease carers frequently encounter misunderstandings and inadequate support from healthcare and social service providers. This can be exacerbated for carers with dual and/or multiple roles. Training and awareness initiatives will bridge this gap and ensure a more supportive, responsive environment.
Recommendation:
- Implement training programs for healthcare, disability and social service providers to improve understanding of rare disease carer needs and ensure culturally competent, trauma-informed support. This includes the dual-role and multiple-role carer experience to reduce barriers to support and foster empathetic service delivery.
Sustainable Peer Support Programs for Rare Disease Carers
The Draft National Carer Strategy reinforces the importance and value of peer support for carers, including how it contributes to improved carer wellbeing, information and knowledge sharing.
Peer support offers immense benefits for rare disease carers, particularly in terms of mental health, well-being and resilience. Given the rarity of their conditions, rare disease carers benefit enormously from networks where they can connect with others who truly understand their experiences and can help them navigate the complexity of services and supports.
Recommendation:
- Provide grants or dedicated funding for peer support groups specific to rare disease carers, with a focus on geographical inclusivity and digital accessibility to enhance knowledge sharing and reduce isolation.
Conclusion
RVA welcomes the Draft National Carer Strategy as a positive step towards improving the lives of Australia’s carers. By implementing RVA’s targeted recommendations, the Draft National Carer Strategy can more fully recognise and support rare disease carers and multiple and dual-role carers, ensuring their unique needs are met.
RVA remains committed to working collaboratively to create a National Carer Strategy that truly reflects and addresses the diverse and vital contributions of rare disease carers.
Thank you for the opportunity to contribute to this consultation.
References
- Commonwealth of Australia, Department of Health. National Strategic Action Plan for Rare Diseases. Canberra; 2020. Available from: https://www.health.gov.au/sites/default/files/documents/2020/03/national-strategic-action-plan-for-rare-diseases.pdf [Accessed October 2024]
- Rare Voices Australia. Submission to the National Carer Strategy consultation. September 2024. Available from: https://rarevoices.org.au/wp-content/uploads/2024/09/RVASubmission_NationalCarerStrategy.pdf [Accessed October 2024]
- Commonwealth of Australia, Department of Social Services. National Carer Strategy — Draft for Consultation. October 2024. Available from: https://engage.dss.gov.au/wp-content/uploads/2024/10/National-Carer-Strategy-Draft-for-Consultation.pdf [Accessed October 2024]