Media Release

MND Australia welcomes aged care changes but cautions NDIS reforms risk leaving people behind  

Published: 22 April 2026

MND Australia has welcomed key elements of Health and Aged Care Minister Mark Butler’s National Press Club address, particularly changes to aged-care co-payments, but cautions that proposed NDIS reforms risk leaving people living with motor neurone disease (MND) without the support they urgently need.

MND Australia strongly supports the decision to remove co-payments for essential daily supports such as showering, continence management and assistance with dressing, alongside clinical supports.

MND Australia is now seeking clarity on whether other critical supports that currently incur a co-pay in the “Independence” category, including assistance with medication, toileting, transport and respite care will also be fully covered.

While the Government’s investment in additional residential aged care places is welcome, significant access barriers remain for people living with MND.

MND Australia CEO Clare Sullivan said that too often, people with MND are ‘clinically declined’ by residential aged care providers because of the complexity of their needs.

“This leaves families with nowhere to turn. Government must ensure that all people who require residential care can access it, and this requires investing in a workforce that can manage complex health needs,” said Ms Sullivan.

MND is a terminal neurological disease with an average life expectancy of just 27 months from diagnosis. Support needs can escalate quickly, requiring coordinated, multidisciplinary care and timely access to services.

MND Australia also supports measures to strengthen the integrity of the National Disability Insurance Scheme (NDIS), including mandatory provider registration and improved financial oversight.

However, the organisation has serious concerns about proposed changes to how people access and maintain support.

“We welcome the decision to delay the introduction of a new planning framework until April 2027,” Ms Sullivan said.

“But the proposed reliance on a single assessment tool raises significant concerns for people who have a rapidly progressing degenerative disease, including MND.”

MND Australia is particularly concerned about plans to limit access to reassessments.

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

“Access to timely reassessment is critical. Any barriers to that process risk leaving people without essential care at the point they need it most.”

While Minister Butler emphasised intergenerational equity in his address, MND Australia said this must include fairness for older Australians living with disability.

“All Australians living with a disability should be equitably funded regardless of their age,” Ms Sullivan said.

“Current aged care funding levels remain inadequate for people living with MND, placing significant financial pressure on families and carers. It also means many carers, most often older themselves, are pushed to physical and emotional exhaustion.”

MND Australia is calling on the Government to ensure that reforms across aged care and the NDIS deliver equitable, timely and clinically appropriate support for people living with rapidly progressing conditions.

This includes:

• Ensuring funding reflects the real and changing care needs of people living with MND
• Maintaining access to flexible and timely assessments
• Improving access to residential aged care for people with complex needs
• Guaranteeing equity of support for older Australians living with disability

“Reform must not leave behind those with the most urgent and complex needs,” Ms Sullivan said.