Ever since a catastrophic diving accident when he was 17 that left Kieron D’Netto with C4-C5 quadriplegia, the 39-year-old Brisbane man describes himself as “mentally tough”. He has had to be.
But an email about his national disability insurance scheme (NDIS) plan in May almost undid him.
“There’s been a couple moments where I’ve tried to avoid completely breaking down,” D’Netto says. “I’ve tried to hold myself together mentally. It is severely taking a toll on me.”
The letter detailed D’Netto’s new NDIS plan, and contained significant reductions in the number of support worker hours available to him.
D’Netto is among hundreds of NDIS participants who say they’ve had their plans cut, or requests for support refused, in 12 months since new rules were introduced.
Others report that the cuts have led to them being forced into group homes, left bedridden or housebound, or put under acute mental distress.
But D’Netto, who requires assistance for most tasks, including monitoring of his complex medical conditions that result from his quadriplegia, says he fears NDIS’s reduction of support worker hours won’t just affect his quality of life – it could actually put his life at risk.
“They’re putting me in a severe state of neglect,” he says.
Guardian Australia has been contacted by dozens of NDIS participants who have had their support cut or refused in the last year, including those with complex permanent disabilities and some who require round-the-clock care. Some say the changes have forced them to be hospitalised and have led to regressions in their capacity.
Hundreds more have reported reductions in their NDIS packages to an online tool, called the NDIS Harm Tracker.
Advocates say the cuts have resulted from changes to NDIS legislation introduced by Labor last October.
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The National Disability Insurance Agency (NDIA), the agency responsible for the NDIS, faces questions in Senate estimates on Friday about its attempts to reduce the size and cost of the scheme. The health minister, Mark Butler, said in August that the government aims to reduce the growth in participant numbers, from its current rate of 12% to 5-6% annually.
But the changes that have already been made have been acutely felt by many participants.
“The severity of distress we’ve seen since last October is difficult to communicate,” says Sarah Langston, the president of the Australian Neurodivergent Parents Association.
“Mental health in the disability community now is at an all-time low. I struggle to put words to the despair that I see around me every day, in my colleagues, in other disabled people.
“Everyone is scared of losing their plan. Everyone.”
The changes to the NDIS Act included new definitions of the supports that can be funded, and introduced funding caps for certain therapies and travel costs for allied health workers – which particularly affects access to support for participants in rural areas – among other things.
“Basically, we have really complex changes in the legislation … that has enabled the NDIA to clamp down on people’s access to funding in a lot of ways that all add up to one big cut,” Langston says.
‘People are feeling distressed’
Since its launch in July, the Harm Tracker website has received 375 submissions. Using the tool, people have claimed to have been left hungry, thirsty and cold in their beds due to reduced support worker hours.
There are stories of people having their mobility and progress with tasks like learning to swallow, deteriorate or stall, due to the loss of therapy. Some say they’ve borrowed money from family, and pensioners described dipping into their superannuation to pay for therapy.
Senator Jordon Steele-John, the Greens’ spokesperson for disability inclusion and the NDIS, said his office has been inundated with calls from participants since the changes.
“People are feeling distressed and uncertain about their future, with some left without the essential supports they need to live safely and independently,” Steele-John says.
Stevie Lang Howson, an organiser with Disabled People Against Cuts, says people are getting “hit with cuts to their plan budgets or existing supports, or [being] told that part of their disability ‘isn’t covered by the NDIS any more’”.
“We are hearing stories of all kinds of negative impacts, including people being pressured to live in group homes and aged care facilities, and facing choices like choosing between going to see your doctor or your family because you don’t have enough support to do both. People’s lives are being narrowed and limited by these cuts.”
A spokesperson for the Department of Health, Disability and Ageing, says the NDIS has “transformed the lives of people with disability” and reforms were based “on advice from the disability community”.
“Reforms to the NDIS will deliver a better experience for participants, while also making sure the NDIS will support people with disability for generations to come,” they say in a statement.
“It’s important to note the NDIS funds disability-related supports, and the health system is best placed to provide medical supports.”
‘It makes me feel dehumanised’
D’Netto’s life turned on a single moment in 2004, when he was mucking around with friends on a bridge. He dived into the water and broke his neck.
“I was 17, I’d just graduated high school and was about to start a career in the defence force,” D’Netto says.
Among his health complications are autonomic dysreflexia, which if left untreated can cause seizures, myocardial infarction, cerebral haemorrhage and death. He also experiences issues with his catheter, that if not monitored carefully can cause rapid and dangerous spikes in blood pressure.
He has some partial arm movement that allows him to operate a power wheelchair, but has no hand function.
“I require staff for all aspects of feeding, dressing, showering, toileting, getting me hoisted out of my bed into my power wheelchair, cooking, house duties,” he says. “Basically, anything you can think of, that you were to do yourself independently as an able-bodied person, I can’t do any of that for myself.”
An occupational therapy report – conducted for D’Netto and supplied to the NDIS – says he has a Care and Needs Scale score of seven, which indicates he cannot be left alone and needs supervision 24 hours a day, particularly in light of the risks presented by his autonomic dysreflexia.
When he received his most recent NDIS plan in May, his 2:1 support worker hours had been cut from four hours to three hours a day. There was also a significant reduction in community access support – which supports him to get out of the house, including to medical appointments.
D’Netto says he has had to ration his care, foregoing some activities, including stretching his body, because his workers don’t have time to assist him with it, and that his support workers often work beyond their paid hours.
He says he felt particularly angered by a passage in a letter sent by the NDIA, seen by Guardian Australia, refusing his attempt to appeal the new plan.
In it, the NDIA planner justified the lower support worker hours by saying: “The evidence demonstrates that you have the capacity to partake in leisure activities of your choosing at home independently such as watching TV, using your phone or reading.”
“My existence doesn’t revolve around sitting in four walls and looking at a TV,” D’Netto says.
“It makes me feel dehumanised. I feel like just a case number for them to look at and go: ‘OK well, how can we reduce his funding?’”
D’Netto says he has always been very mentally tough, but the last five months have taken a huge toll.
“It makes you feel like, ‘Am I even a human to you guys?’ What’s the point of being here?” he says.
“Will that save your budget?”
• In Australia, support is available at Beyond Blue on 1300 22 4636, Lifeline on 13 11 14, and at MensLine on 1300 789 978. In the UK, the charity Mind is available on 0300 123 3393 and Childline on 0800 1111. In the US, call or text Mental Health America at 988 or chat 988lifeline.org
