Position Statement: New NDIS Changes May Disadvantage Australians Living with Rare Disease Disability

Rare Voices Australia (RVA) is concerned about the impacts of the latest changes to the National Disability Insurance Scheme (NDIS) on Australians living with rare disease disability. Changes to safeguards for high support needs participants came into effect from 1 October 2026.

RVA understands the updated safeguards may only be applied to participants who currently receive funded 24-hour support, rather than participants who require 24-hour support. This distinction is critically important for Australians living with rare disease disability. Despite having high intensity 24-hour supports needs, people with rare disease disability may be excluded from safeguards intended for high support needs participants.

Accessing 24-Hour Support Is Not Always an Option for People Living with Rare Disease Disability

Australians living with rare disease disability often:

• Require 24-hour high intensity disability support. This is due to the complex interface between health and disability commonly experienced by people living with a rare disease.
• Struggle to find appropriately skilled and qualified disability supports that can address the high complexity associated with rare disease.

The following are inherent in rare disease disability:

• The lack of both expert knowledge and experience due to the small numbers in rare disease.
• The need for more intensive or specialised support.

These are the barriers that often prevent NDIS participants living with rare disease disability from receiving 24-hour disability support. It’s not a matter of choice or people not needing 24-hour disability support.

These disability workforce challenges typically lead to an overreliance on unpaid family caregivers and informal supports.

RVA acknowledges there is considerable nuance and complexity involved as the NDIS continues releasing more information about the changes. However, we are concerned that these changes will result in:

• NDIS participants with rare disease disability being at risk of having their access to safeguards denied. These safeguards are intended to protect their health, safety and meaningful community connections, including access to tertiary education and unpaid employment opportunities.
• Significant impacts on caregiver sustainability, workforce participation and financial security.

Next Steps: Rare Voices Australia’s Rare Disease Disability Advocacy

RVA calls on the Department of Health, Disability and Ageing and the National Disability Insurance Agency to:

1. Ensure that eligibility for safeguards for high support needs participants is based on requiring 24-hour disability support.
2. Work with RVA and other Disability Representative and Carer Organisations to monitor, identify and address unintended consequences early.

We will also contact local Members of Parliament and Australian Senators and encourage our +100 RVA Partner groups/organisations to do the same.

Why This Advocacy Matters

Nearly all of the estimated 2 million Australians living with a rare disease experience long-term impacts daily – impacts that meet the Australian Government’s definition of a disability.^1,2

NDIS participants living with rare disease disability should not be disadvantaged because their support needs are complex, or because of other challenges typically associated with rare disease (limited data, expert knowledge and/or expertise etc.). NDIS participants with rare disease disability must receive the same protections as other participants.

References

1. Australian Government. Australian Public Service Commission. Definition of disability. September 2019. Accessed 2 October 2026. https://www.apsc.gov.au/working-aps/diversity-and-inclusion/disability/definition-disability
2. Australian Bureau of Statistics. Disability, ageing and carers, Australia: Summary of findings. July 2024. Accessed 2 October 2026. https://www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release