11/01/2026
Tony Lewis chooses voluntary assisted dying after being denied NDIS access due to his age
Tony Lewis has Motor Neurone Disease and can’t access the NDIS because of his age. He’s now chosen voluntary assisted dying because of his inadequate aged care support.
A former engineer who can’t access the National Disability Insurance Scheme because he’s too old says Australia’s ageist two-tier health system has left him with no choice but to end his life through Voluntary Assisted Dying.
Tony Lewis, 71, was diagnosed with Motor Neurone Disease last March, six years after the cut off date for qualifying for NDIS funds. Anyone diagnosed with a disability after the age of 65 can only access support through My Aged Care. The maximum someone can claim through the new Support at Home program is $78,100 a year, less than a third of what someone can get on the NDIS.
Mr Lewis, from Queensland, who has almost lost the ability to talk, eat and move, is on slightly less than the top aged care package, despite needing 24/7 care.
At the moment, he uses his funds to pay for four showers and one hour of cleaning a week.
The bulk of his care is provided by his wife Gill, 65, who luckily has a nursing background.
When she can no longer cope, he has decided to opt for euthanasia, rather than go into an aged care facility.
“I would like to think if he had appropriate care, and there was enough of it, he would be able to cope better,” Mrs Lewis said. “It would be a lot less stressful. I try to shield him from the back and forth arguments and pleas for funding because he does not need that. This month, I’m already over budget.”
She said the aged care system is slow to respond to her husband’s fast changing needs, with requests for a new assessments taking around six months.
The average length of time between diagnosis of MND and death is 27 months, and people can decline rapidly.
MND charities have provided most of the equipment which helps keep Mr Lewis at home.
Mr Lewis said he has started the VAD process, because he doesn’t “want to be a useless lump of meat”.
He said he was speaking out to help others as it was too late for him.
CEO of MND Australia, Clare Sullivan, said there were 2800 Australians living with the disease and half were diagnosed over the age of 65.
“The sort of the social divide between the haves and the have nots is really highlighted in the MND community,” Ms Sullivan said.
“Based on nothing other than an arbitrary divide of a birthday, you can either access $300,000 or less than $100,000 in support each year. I can see why people think it’s unjust and unfair.”
She said having the right equipment was essential to being able to stay at home, but the cost of wheelchairs, bed hoists, technology so that they could communicate after they lost their ability to speak, was largely inaccessible to those surviving on aged care funding.
It forces some into residential aged care, but many find it even difficult to access that, so end up in hospital.
“I know a gentleman who has been in hospital for over a year and probably won’t go home again,” Ms Sullivan said.
A Department of Health, Disability and Ageing spokesman said under the new Aged Care Act, people can access funding for assistive technology and home modifications on top of their ongoing home care budget.
The spokesman said those needing urgent support would receive their funding within one month of their approval for the program.
courier mail
https://www.mndaustralia.org.au/articles/racing-against-time-gil-and-tony-s-story
