Earlier today MND Australia held a Global MND Day event at Parliament House co-hosted by the Parliamentary Friends of MND Group.

A key part of the event was the launch of MND Australia's 6 Point Plan to Support People Living with MND. In the lead up to the next federal election, our Six-Point Plan outlines 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. Fund disability supports for older people at a comparable level to the NDIS
2. Improve access to the NDIS for people with MND
3. Fund an MND patient registry
4. Improve access to genetic testing
5. Expedite access to novel treatments and clinical trials
6. Fund a Neurological Mission within the Medical Research Future Fund (MRFF)

Several Government ministers and other Parliamentarians in the health and disability space were invited to speak, including Minister for the NDIS Bill Shorten MP, who spoke about actions the National Disability Insurance Agency is implementing to improve the NDIS experience for people with MND.

Minister Shorten announced that from 1 July 2024, motor neurone disease will receive a specialist pathway within the NDIS. This 'specialist pathway' means that the process of applying for an initial NDIS plan and plan revisions should be faster and more seamless for people with MND.

This announcement was welcomed by Jason Smith, who has lived with MND for seven years. "I've had friends who've had to wait four months or longer to have their NDIS plan approved, and in that time their MND has progressed considerably. MND can be a rapidly progressing disease, people just don't have time to wait for the assistive technology or home modifications they urgently need."