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 may 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.
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:
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, we've created resources to help you talk with your MP about MND and Aged Care. The more letters and messages MPs receive about this issue, the more likely they are to address it.
In your message:
You can also email, write, tweet, call or message the relevant Ministers and Shadow Ministers:
Minister for Health & Aged Care, Greg Hunt
Minister for Senior Australians & Aged Care Services, Richard Colbeck
Shadow Minister Health & Ageing, Mark Butler
Shadow Minister Senior Australians and Aged Care Services, Clare O'Neill
Shadow Assistant Minister for Health & Ageing, Ged Kearney
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.
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 massive 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.