For people with motor neurone disease (MND) who need care, equipment and home modifications, one day can mean the difference between $50,000 or $500,000 in funding each a year.
Support group MND Victoria says an “arbitrary cut-off” means those diagnosed before the age of 65 are funded under the National Disability Insurance Scheme (NDIS), while those diagnosed after that age are covered only by an aged-care package.
For the 2,100 Australians living with MND, this can mean the difference between two hours of funded care each day, or 24/7 support, as unlike the NDIS, aged care has a $54,000 limit.
74-year-old Central Victorian man Michael Coles, who was diagnosed with MND four years ago, can’t use his legs, can’t move his arms and can barely move his hands.
“I have no mobility at all in my legs. I can’t even wriggle my legs to make them more comfortable,” Mr Coles said.
“Same with my arms. So I can’t lift my hands. I can’t straighten these fingers.
“I used to sing a lot, but just can’t now, because I can’t go through a complete phrase without taking a breath.”
When he is moved from his specially designed armchair, he experiences an excruciating burning sensation.
But there’s nothing wrong with Mr Coles’s sense of humour.
“If I could move my hands, I’d slap my forehead and say, ‘Sh [s**t] … shellgrip!”
“It’s a real comedy, I got to tell ya.”
An armchair, which he spends between seven and 10 hours a day sitting in, was one of several things he could not get funded through his $54,000-a-year care plan.
Like 55 per cent of Australians who live with MND, Mr Coles was over the age of 65 when he was diagnosed, meaning he fell into the “unlucky” category of funding, as MND Victoria describes it.
“Why is it that someone of my age who has this disability can not get NDIS? Am I not disabled?” Mr Coles said.
‘Dreadfully unfair’ difference in funding
MND Victoria CEO Kate Johnson said someone with the disease who had an NDIS plan would receive about $200,000 a year on average — more than triple what Mr Coles received.
But if they were considered high needs, like Mr Coles was, they could receive up to $600,000 a year.
“The needs of people under and over 65 with MND are the same,” Ms Johnson said.
“Their needs are very great as the disease progresses, so to have access to only $54,000 for support … is very unjust.
“If you are over 65, you can’t register for the National Disability Insurance Scheme, so it’s a bit of a lottery in terms of funding, depending on whether you’re 65 or not.
“We’ve known of two men who were friends through their footy club, both living in the same town, one diagnosed under 65 and one over 65.
“The one that was under 65 had ramps, equipment, all of his care paid for through the NDIS.
MND Victoria spends $1.2 million a year helping people get access to assistive technology.
Ms Johnson said the fact that about half of those living with the disease were not eligible for NDIS funding was “dreadfully unfair”.
“It’s an arbitrary cut-off, that at 65, you can’t access the support through the NDIS and you’re forced to go through government-funded aged care,” she said.
MND Victoria is calling for the new federal government to review aged-care funding and introduce a needs-based model that provides more equitable funding for anyone over the age of 65 who has a disability.
“We know that there are people on the NDIS that have potentially two workers at their home 24 hours a day to provide support, and an aged care package will only provide a couple of hours each day,” Ms Johnson said.
‘Possible reforms’ for in-home aged care, government says
A Department of Social Services spokesperson said the cut-off age for the NDIS was a recommendation from the Productivity Commission in 2011.
“Those 65 or older could be supported through aged care, and that remains the case,” the spokesperson said.
“The government has committed to review the NDIS design, operation and sustainability and bring forward a planned review of the scheme.
“The government will consult on terms of reference that will consider all available evidence and look at benefits as well as problems inside and outside the NDIS.”
A Department of Health spokesperson said the government was consulting with stakeholders and people who received aged-care funding about possible reforms for in-home aged care.
“The government is committed to fixing the aged-care crisis, and has committed to investing an additional $2.5 billion to ensure older Australians receive the aged care they deserve.”
Possible reforms too late for pensioners
Mr Coles and his wife Jennie have spent thousands of dollars buying things he needs, like a new chair, squares of temporary carpet and a bathroom renovation to make it accessible for someone with MND.
Mr Coles said without financial help from family, he did not know where he would be.
“The van has a hydraulic lifter so I can get in and out, so we can go places. We couldn’t buy that,” he said.
While requests for some things were denied, because they were deemed to be home improvements, others took months for the funding to come through, Mr Coles said.
Mr Coles said he had $32,000 in funding waiting to be spent, but he was not able to get things approved.
“Out of my $50,000 [in funding], $12,000 goes to admin … $900 a month,” he said.
For Ms Coles, some days a funding fight is too hard a battle.
“Sometimes we go, ‘What’s the point?’ We need our sanity more than a cup or mug.
“The frustration you feel from something like this … overtakes your entire life.