MND Australia has five key policy initiatives the Australian Government can implement to immediately make a difference to the lives of people living with MND, their families and their carers:
1. Link MND data for national impact
2. Increase access to quality specialist care and research
3. Fast-track Aged Care for people living with MND
4. Fund disability supports in Aged Care at a comparable level to the NDIS
5. Protect future generations through genetic testing and counselling
1. Link MND data for national impact
MND research and care in Australia are constrained by fragmented and ageing data systems.
MND Australia is calling for a $12 million investment over two years to establish a National Unified MND Database.
Linking clinical, research and registry data would accelerate research, improve diagnosis, support clinical trials and enable better planning of care and services.
Costing: $12 million over 2 years
2. 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
3. Fast-track Aged Care for people living with MND
Nearly two-thirds of people diagnosed with MND are aged 65 and over and are excluded from the NDIS.
MND Australia is calling for a formal fast-track aged care pathway for people with MND, similar to the NDIS priority pathway, to ensure rapid access to assessment, assistive technology and high-level care when it is urgently needed.
4. Fund disability supports in Aged Care at a comparable level to the NDIS
People diagnosed with MND aged 65 and over receive significantly less funding and support through Aged Care than those 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
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.