Seniors need greater Motor Neurone Disease support

People with motor neurone disease (MND) who are older face long waiting lists for disability care that meets their needs, and in some cases, are dying before they receive help.


Motor Neurone Disease Week – May 5-11, 2019 is highlighting the special and urgent need for more timely support for aged Australian sufferers.


Research shows that 50% of people with MND are diagnosed when aged 65 and over. But due to their age, they do not have access to the NDIS and have to rely on Aged Care services for their disability care and support. This often means they are pushed into financial hardship and have to depend on their family to meet their care needs.


“Aged Care services are designed for people who are frail-aged or experiencing dementia. The system doesn’t work for someone with a progressing neurological condition like MND, it doesn’t come anywhere near to meeting their complex disability needs,” said Carol Birks, CEO of MND Australia.


“The waiting lists for Aged Care services are really long. MND often progresses rapidly and some people die before they get to the top of the list,”


MND Australia believes everyone with MND deserves access to the care and support they need, regardless of their age, and is encouraging the Australian community to call on the next Government to make Aged Care services fair for people with MND through faster access to high level Aged Care packages and additional funding for assistive technology.


“Everyone can get involved in helping us advocate for this issue. Through our website, you can email the federal candidates in your electorate and encourage them to pledge their support to make Aged Care services fair for older Australians with MND.”


The problem:

  • Motor neurone disease (MND) is a fatal and rapidly progressive neurological condition affecting the nerves from the brain and spinal cord that control movement. In most cases, people with MND become unable to move, speak, swallow and eventually breathe
  • People diagnosed with motor neurone disease (MND) when aged 65 and over do not have access to the NDIS and are forced to rely on Aged Care services (which includes home care support). Aged Care services do not meet the complex and rapidly changing disability needs of someone with MND.
  • The waiting list for Aged Care services is long. Over 128,000 Australians are currently on the waiting list. MND often progresses rapidly and some people may die before they get to the top of the list.
  • Many older Australians with MND are forced into financial hardship and must rely on family members to meet their complex disability needs.
  • Everyone living with MND should have access to the right care, in the right place, at the right time.


The Solution:

  • Call on the next Government to improve Aged Care services for people with MND
  • Funding for more high level home care packages
  • Fast-track access to level 3 & 4 home care packages for people with MND
  • Champion additional assistive technology funding for people with MND.


To find out how to get involved -


7 May 2019.