Advocacy matters! After extensive advocacy to the Federal Government, on 3 June 2026 we were informed that all people living with MND would receive priority access to funding, whether they were accessing supports via aged care or the NDIS.
There is more to do to ensure policy settings are responsive to everyday realities. Here are MND Australia’s key policy asks that will make an immediate difference to the lives of people living with MND, their families and their carers:
1. Increase access to quality specialist care and research
2. Fast-track Aged Care for people living with MND - achieved!
3. Fund supports commensurate to need
4. Support access to residential aged care through targeted financial loading and workforce development
5. Protect future generations through genetic testing and counselling
1. Increase access to quality specialist care and research
Geographic location currently determines whether someone can access specialist MND clinics, research opportunities and experienced allied health care professionals.
MND Australia is seeking $30 million over three years to support clinic coordination, expand research opportunities to all clinics, improve outreach to regional and remote areas, and strengthen the role of MND State Associations in delivering coordinated care at home.
Costing: $30 million over 3 years
2. Fast-track Aged Care for people living with MND - achieved!
With the announcement on 3 June, the Department of Health, Disability and Ageing has committed to ensuring funding for people living with MND will be received within 30 days of funding approval, whether that support is through aged care or the NDIS.
3. Fund supports commensurate to need
People diagnosed with MND aged 65 and over receive significantly less funding and support through Aged Care than those currently supported by the NDIS, despite having the same needs.
MND Australia is requesting investment of $287 million per year to address this age-based inequity and ensure timely, adequate supports for all people living with MND.
Costing: $287 million a year
4. Support access to residential aged care through targeted financial loading and workforce development
People living with MND are ‘clinically declined’ from residential aged care, due to the complexity of their caring needs. Financial loading to cover the cost of providing complex clinical care, combined with an investment in upskilling the aged care workforce, would reduce unnecessary hospital stays and provide people living with MND a safe place to stay when home is no longer an option.
5. Protect future generations through genetic testing and counselling
Up to 15 per cent of MND cases have a known genetic basis. MND Australia is calling for Medicare-rebated genetic counselling and no-cost access to IVF and pre-implantation genetic testing for families who choose this option, to protect future generations.