Marie and Robert Young have never been afraid of hard work.
Over the years, the retired nurse and former firefighter have farmed cattle, tended vineyards and made wine to support their family and secure their future.
Now all that is at risk.
“My muscles have deteriorated. I can’t garden anymore,” Ms Young said.
“Socialisation is the thing I miss most.”
In 2021, Ms Young was diagnosed with motor neurone disease (MND), a rapidly progressing, degenerative condition that leads to paralysis.
There is no cure for MND and it’s expected Ms Young only has a few years left to live.
To allow the 74-year-old to live safely and make the most of her rapidly declining ability to move, the couple have had to buy mobility devices and make alterations to their Rainbow Beach home in South-East Queensland.
It has cost them tens of thousands of dollars.
Most of it has come from their own pocket because Ms Young is not eligible for government support through the National Disability Insurance Scheme (NDIS). Australians aged over 65 cannot apply to join the scheme.
“I can’t see why they … think when you turn 65 you no longer have the same living standards,” Ms Young said.
“Life doesn’t stop at 65.”
Going without ‘desperately needed’ support
The way government support for people living with disability is designed, anyone under 65 with a severe disability can apply to get uncapped funding through the NDIS to help them live a productive, independent life and stay connected with their community.
However, after they turn 65, they’re unable to apply and are reliant on other services, such as those provided through the aged care system.
Aged and Disability Advocacy Australia chief executive Geoff Rowe said the aged care system was not suited to supporting people with high levels of disability.
“The level of support [provided], really, is quite minimal compared to what’s available to someone who is supported under the NDIS,” Mr Rowe said.
He said his organisation heard nearly every day from people who were struggling to get the support they needed via the aged care system.
Ms Young was able to get a motorised scooter through the Commonwealth Home Support Program.
That enabled her to get out and about in her community again and softened the financial blow of her declining mobility.
However, adding a lift at their front door so she could get to the scooter cost them $14,000. Modifying their bathroom so Ms Young wouldn’t fall cost a further $7000.
That was in addition to funding they got from an aged care program.
Ms Young was offered a home care package, but the co-payments were so high and accepting it would mean losing other supports, so it didn’t make financial sense.
Ms Young knows that, eventually, her condition will deteriorate to the point where a home care package would be her only option. At that point, she would be eligible for $53,268 a year.
David Ali, the chief executive of MND Australia, said the average amount of support provided by the NDIS to people with the degenerative condition was $242,000.
“It’s clear that people diagnosed with MND aged 65 and over do not receive the level of funding and supports and services that they desperately need,” he said.
With many more expenses expected in the future as her condition deteriorates, Ms Young said she worried what would be left for her husband.
“He’ll probably have to sell [the house] down the track … unless he gets a full pension,” she said.
Legal challenge
To Mr Ali and other disability advocates, the age cut-off amounts to age discrimination.
They say limiting access to disability support based on age contravenes article 19 of the United Nations Convention on the Rights of Persons with Disabilities.
The NDIS age cap was thrust further into the spotlight last month when a proposed class action alleged excluding over-65s from the scheme due to their age was unlawful.
In a statement to the ABC, NDIS minister Bill Shorten said there were no plans to expand the scheme’s age limit as parliament had always intended for over-65s to be covered by the aged care system.
“When the NDIS was designed and legislated, the aged care system was considered superior,” he said.
“It is not up to the NDIS to be a stop-gap for aged care support services for people with disability.”
Mr Shorten described the NDIS as “an oasis in the desert for older Australians” and said his role as minister was to make that system more effective.
Mr Rowe said people over the age of 65 should not be treated as second-class citizens.
He said he wanted to see aged care funding that reflected what was available to people on the NDIS: individually focused support allowing people to live in their own home and stay in their community.
“We have a once-in-a-lifetime opportunity to reform our aged care system, to make it a system that people want to use and that Australians are proud of and not ashamed of,” he said.
A spokesperson for the Department of Health and Aged Care said it had been “consulting extensively” with aged care stakeholders over recent months, including those with a disability, on possible reforms to in-home care.
“This work has included consultation on how to improve access to goods, equipment, assistive technology and home modifications for older Australians, including for people with a disability,” the spokesperson said.
“The department will be undertaking further research to assess the feasibility of providing safe and cost-effective higher levels of care for people living at home.”
A ‘ludicrous situation’
Like Ms Young, Geoff Ellis is also locked out of the NDIS.
Mr Ellis, 68, contracted polio when he was two and now lives with post-polio syndrome.
The retired insurance broker lives an active, independent life on a 30-acre property near the north-eastern Victorian town of Gobur.
Because polio has weakened his muscles, he uses poly-carbon splints to stabilise his lower legs, to prevent him from falling.
However, he was recently advised he now needs a full splint on his left leg. That is expected to cost him $10,000.
While a Victorian disability equipment scheme was able to chip in $2000 for his old splints, Mr Ellis said the new ones remain “basically unfunded”.
“They are an absolute must, because I simply can’t walk without them,” he said.
Mr Ellis was under 65 when the NDIS rollout began, but by the time it reached Gobur, he was 67.
Unable to join the scheme, Mr Ellis is shut out for life.
He and his family have funded all the equipment he has needed since he was diagnosed.
“To go through life paying for [everything] yourself, then all of a sudden there’s a scheme there that could pay a substantial amount of the $10,000, and to then miss out on that is simply unfair,” he said.
“I mean, the ludicrous situation of the postcode … it just doesn’t make sense.”
Mr Ellis loves the life he and his wife have built for themselves on their property, but it hasn’t always been easy.
He has had a few serious falls and wants to prevent any more.
“I’ve worked hard through my life, and my wife and myself have developed the ability to have this place,” he said.
“I just want to enjoy it.”
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