MND Australia

Let's Make Aged Care Fair for people aged 65+ with MND


Australians diagnosed with MND aged 65+ do not have access to the National Disability Insurance Scheme (NDIS).

Older Australians with MND must rely on My Aged Care for their disability care. But this system is not designed for people with complex and rapidly progressing conditions like MND. It is for people who are frail-aged.

My Aged Care home care packages have very long waiting lists. Over 128,000 Australians are waiting for a Home Care Package. Some people with MND die before they get to the top of the waiting list.

People with MND can lose the ability to walk, move, eat, swallow and eventually breathe. Low level My Aged Care Home Care packages do not come close to meeting their disability needs.

How can we fix this?

We need to end age-discrimination and provide Australians diagnosed with MND aged 65+ the same level of care and support as younger Australians.

We're calling on the federal Government to urgently invest in implementing the recommendations from the Royal Commission into Aged Care Quality and Safety.

Key recommendations from the Royal Commission affecting people with MND include:

  • Older Australians with a disability should receive, through the aged-care system, daily supports and assistive technology equivalent to the NDIS
  • Urgently clearing the My Aged Care home care package waiting list
  • Allocating home care packages at the level people are assessed as needing within one month of assessment date (this is key for people with MND who need fast-track access to high-level packages)
  • Introduction of an assistive technology, home modifications & equipment category 

How can you help?

We need to use our collective voice to let the decision makers know that we need to urgently improve care for older Australians with MND.

You can write, email, tweet or call or your local federal MP. You can find your local member and their contact details here. You might like to ask them for an in-person meeting. The more letters and messages MPs receive about this issue, the more likely they are to address it.

In your message:

  • tell them what the problem is, you can copy the points we've listed above
  • outline your support for urgent Government investment in implementing the recommendations from the Royal Commission
  • ask them to take action and support implementation of the recommendations from the Royal Commission
  • include a personal story about how MND has affected you, your family or friend
  • write a hand-written and signed letter - this can often be more impactful than email
  • include your full name and address so they know you live in their electorate and they can send you a response
  • invite them to attend a support group meeting in your electorate so they can meet older Australians living with MND

You can also email, write, tweet, call or message the relevant Ministers and Shadow Ministers:

Minister for Health & Aged Care – Mark Butler

 Minister for Aged Care – Annika Wells

Assistant Minister for Health & Aged Care – Ged Kearney

Shadow Minister for Health & Aged Care – Anne Ruston

You can also contact your local state or territory MPs and the relevant ministers. Although the NDIS and Aged Care services are federally funded, you can encourage state and territory MPs to put pressure on their federal colleagues.

Join the conversation!

Many people (including some politicians) don't realise that people diagnosed with disabilities aged 65+ don't have access to the NDIS. And unless they've had personal experience, they don't know the extensive problems with the My Aged Care system. They may also not know how devastating a disease MND can be, and the complexity of the care needs.

You might like to post about the issue on social media and tag us @mndaustralia on Facebook, Instagram or X