Disability Support Information
Rare diseases, like many other chronic diseases, are often serious and progressive, resulting in complex support needs that extend beyond health into social/welfare, mental health, education, employment, housing and disability.1 While not every person with a rare disease has an associated disability, those who do will often require long-term support and ongoing assistance, including for daily activities.2
Timely access to person-centred disability support for Australians living with a rare disease is vital to sustaining quality of life and, where possible, reducing or preventing functional decline. Access to services and equipment should be responsive to the complex and progressive nature of rare diseases and guided by people’s changing needs. This requires a well-trained interdisciplinary workforce of disability and health care workers.2
This page contains information on Australian Government services supporting people living with a disability. Information on additional services can be found at the Australian Government Department of Social Services: For people with disability page. Please visit the State and National Services pages on the RARE Portal for further information on disability support as well as other support for families and carers.
Rare disease support groups/organisations may be able to provide specific information and assistance in accessing disability support services for a particular rare disease. They may also be able to aid in facilitating equipment provision where necessary. Rare Voices Australia’s (RVA) A-Z Support Directory lists relevant support groups/organisations for individual rare diseases, where available.
The information on this page is intended as a guide only. If you are aware of any additional information that may benefit stakeholders with an interest in this page or another page on the RARE Portal, or if you notice any broken links or misleading information, please let us know via the Contribute page.
Services Australia is an Australian Government agency that supports Australians by delivering accessible services and payments.3 The following resources are available on their website:
- Services Australia: Living with Disability – information on the payments and services available for people living with a disability, as well as resources for help and support available in the community
- Services Australia: Caring for Someone – information on the payments and services for people providing temporary or ongoing care, including when taking time off work to care for someone
National Disability Insurance Scheme (NDIS)
The National Disability Insurance Scheme (NDIS) is Australia’s national scheme for people with a disability.4 It provides funding directly to eligible Australians with a disability under the age of 65 years and connects them to supports and services in their community. Australians who are already on the NDIS before they turn 65 can either continue with the NDIS or transition to other Commonwealth aged care supports.
Information about the supports funded by the NDIS is provided on the NDIS website. The funding is intended to support people with a disability to gain more time with family and friends, greater independence, access to new skills, jobs or volunteering in their community, and an improved quality of life.4 To access NDIS funding, Australians must check their eligibility before submitting an application. Evidence of a disability from medical providers and allied health professionals is required to demonstrate the need for NDIS funding.2
NDIS: For participants has information for those applying for NDIS support, as well as those who have had their NDIS application approved and require a NDIS plan.
Other useful information and resources related to the NDIS:
- Kiind: NDIS
- Kindred: NDIS Resources
- Every Australian Counts: Your NDIS
- Syndromes Without A Name (SWAN) Australia: Resources on NDIS
- Department of Social Services, Australian Government: National Disability Advocacy Program – provides people with disability access to effective advocacy support
- Summer Foundation: Getting the Language Right – health practitioners’ guide to writing reports, letters, forms and assessments for the NDIS
Aged Care Supports
In Australia, people living with a disability who are over the age 65 may not be eligible for the NDIS and will need to seek support through government aged care services instead. Services Australia: Getting aged care services provides information for older Australians who require help in their home or support to move into an aged care facility, including for those with a disability.
My Aged Care is an Australian Government service that facilitates access to government-funded aged care services.5 Individuals must be aged 65 years or over (50 or over for Aboriginal and Torres Strait Islander people) and demonstrate a need for assistance with everyday tasks to qualify for assistance. Individuals may be eligible if they have:
- noticed a change in ability or memory
- been diagnosed with a medical condition or reduced mobility
- experienced a change in family care arrangements, or
- experienced a recent fall or hospital admission.5
The first step is to apply for an aged care assessment, which includes evaluation of eligibility. Assessments are conducted in person, usually at home.
The My Aged Care website also has information for families and carers, as well as health professionals. It provides information about available service providers, as well as an estimation and explanation of the costs that may be incurred.5
Disability Gateway is an Australian Government initiative assisting all people living with a disability, their families, and carers, to locate and access relevant information and services across Australia.6 It provides information on a wide range of state and territory services, including health, housing, employment, transport and everyday living.
Carer Gateway is an Australian Government program that provides free services and support to people caring for a family member or friend with a disability, medical condition, mental illness or someone who is frail due to age.7 The Carer Gateway: Services and Support page has information about available support and services, including who is eligible and how to get access. There is also a list of Carer Gateway Service Providers (Australian health and carer organisations providing services for carers).
Additional resources for carers can be found on the individual State and National Services pages on the RARE Portal under ‘Other support for families and carers’.
- Commonwealth of Australia. Department of Health. National Strategic Action Plan for Rare Diseases. Canberra; 2020. 63 p. Available From: https://www.health.gov.au/sites/default/files/documents/2020/03/national-strategic-action-plan-for-rare-diseases.pdf
- Jackson, A. The McKell Institute. Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. Oct 2019. 31 p. Available from: https://mckellinstitute.org.au/research/reports/disability-rare-disease/
- Commonwealth of Australia. Services Australia. Accessed 22 August 2023. Available from: https://www.servicesaustralia.gov.au/
- National Disability Insurance Agency. National Disability Insurance Scheme (NDIS). Accessed 7 August 2023. Available from: https://www.ndis.gov.au/
- Commonwealth of Australia. My Aged Care. Accessed 8 August 2023. Available from: https://www.myagedcare.gov.au/
- Commonwealth of Australia. Department of Social Services. Disability Gateway. Accessed 8 August 2023. Available from: https://www.disabilitygateway.gov.au/
- Commonwealth of Australia. Department of Social Services. Carer Gateway. Accessed 23 August 2023. Available from: https://www.carergateway.gov.au/