Older Australians need appropriate Motor Neurone Disease support

People diagnosed with a disability aged 65 and older cannot access the National Disability Insurance Scheme (NDIS).


The introduction of the National Disability Insurance Scheme (NDIS) has brought many positive changes for Australians living with a disability: most people can now access NDIS funding for the care, equipment and services they need.


However, those diagnosed with a disability when aged 65 or over miss out on the benefits of NDIS.


CEO of Motor Neurone Disease Australia Carol Birks said, “Many people don’t realise that you can’t access the NDIS if you acquire a disability when aged 65 or over. It’s simply age-discrimination, there’s no reason older Australians don’t deserve the same care and support.”


People living with motor neurone disease (MND) are one group of Australians particularly affected by this problem. Around 50% of people with MND are aged 65 or older when diagnosed.


MND is a rapidly progressing neurological condition that affects people’s ability to move. Many people gradually lose the ability to walk, speak, swallow and eventually breathe. The average life expectancy is 2.5 years.


“People with MND have complex and progressing disability care needs,” says Carol Birks.


“Government funded services to support older Australians with MND at home are only available through Aged Care, but this system is designed for the frail-aged, not people with MND. The amount of funds available through an Aged Care package is capped and doesn’t come close to meeting their disability needs. And there’s no funding for vital equipment, such as wheelchairs.”


Older Australians diagnosed with a disability also face long waiting lists for Aged Care services. Some even die before they get to the top of the list.


Tony, aged 69, from the Gold Coast, was diagnosed with MND last year. “I’ve been waiting for an Aged Care home care package since September 2019. I have MND, I don’t have time to wait.”


“We either need to end this age-discrimination and open up the NDIS to all people diagnosed with a non-aged related disability, or dramatically improve Aged Care services for people with MND,” said Carol Birks.


“We’re calling for older Australians with MND to have immediate fast-track access to high level Aged Care home care packages and additional funding for equipment.”


People can get behind MND Australia’s campaign to Make Aged Care Fair for people with MND by letting decision makers, such as federal ministers and local MPs, know that this is an issue they care about and want to see change.


MND Australia’s website www.mndaction.org.au has tools to help people locate and communicate with politicians about this issue.


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:

  • People diagnosed with a non-age related disability aged 65+ should have access to the NDIS.


  • Immediate additional funding is needed for more high level Aged Care home care packages.
  • Fast-track access to level 4 home care packages for people with MND.
  • Additional funding for vital equipment, such as wheelchairs, Mr Birks concluded.


See how to get involved - https://www.mndaction.org.au/Make-Aged-Care-Fair.aspx


4 May 2020.