Media release

Federal Budget leaves critical questions unanswered for people with MND

Published: 12 May 2026

MND Australia has welcomed several measures in the 2026/27 Federal Budget, including changes to aged care co-payments and faster release of Support at Home packages, but warns major concerns remain for people living with motor neurone disease (MND) amid ongoing aged care and NDIS reforms.

Aged care

MND Australia strongly supports the decision to exclude essential aged care services, including showering, continence care, and assistance with dressing, from co-payments for non-clinical services.

The required co-pay on essential services has created a great deal of distress and hardship for many older Australians living with MND and their carers.

MND Australia also welcomed the Government’s commitment to release Support at Home packages more quickly, a key ask in our pre-budget submission. Delays are having devastating consequences for people living with rapidly progressing conditions.

“MND can’t wait. This is a disease that is not on the Government’s timeline,” MND Australia CEO Clare Sullivan said.

Currently most people are waiting between 9 and 10 months for funding while their condition rapidly deteriorates.

“This is leading many people in the community to self-fund very expensive clinical and support interventions, including allied health treatments, equipment such as wheelchairs and grab bars, and support in the home for getting out of bed, dressing and showering,” Ms Sullivan said.

“Just this week, a 76-year-old woman with MND told us she had taken out a reverse mortgage on her home to pay for essential care while waiting months to receive her approved funding.”

While MND Australia welcomed investment in additional residential aged care beds, the organisation said access remains a critical issue.

“Many people with MND are still being ‘clinically declined’ from residential aged care because providers are not equipped to manage complex clinical needs,” Ms Sullivan said.

“Increasing bed numbers alone is not enough. The Government must also invest in a skilled workforce capable of delivering intensive clinical care.”

MND Australia said assessment systems must also better reflect the realities of rapidly progressing neurological disease.

At the heart of the stated budget goal “to ensure [older Australians] get the support they deserve,” the assessment process needs to be accurate, ensuring package amounts reflect need and the urgency of individual cases are properly prioritised.

“We highlighted the need for increased package amounts in our pre-budget submission, but the level of support available to older Australians with complex conditions like MND still falls well short of what is needed,” Sullivan said.

NDIS

While MND Australia supports reforms aimed at improving transparency and integrity within the National Disability Insurance Scheme (NDIS), it is concerned that a greater focus on functional assessments over diagnosis could disadvantage people living with MND.

“For people with MND, support needs can change dramatically in a matter of weeks or months,” Ms Sullivan said.

“We are yet to see how a system focused primarily on functional capacity will accommodate a disease that progresses so rapidly.”

The organisation also expressed concern that supports currently available through the NDIS, including access to assessors with expertise in MND and timely funding decisions, may be lost under broader reform measures.

Intergenerational fairness 

A pre-budget request to provide better access to genetic testing and counselling remains unaddressed. A relatively small investment would empower younger Australians to plan for themselves and future generations.

Australia said the Government’s focus on intergenerational fairness must include equitable support for older Australians living with disability.

“Supporting people with MND to remain at home is not only what most people want, it also reduces pressure on hospitals and the broader health system,” Ms Sullivan said.

“But funding levels through Support at Home remain inadequate for many people with MND, even at the highest package levels.”

“People living with MND do not have time to navigate delays, reassessments and funding uncertainty,” Ms Sullivan said. “This Budget must be backed by reforms that deliver fast, equitable and clinically appropriate support when people need it most.”