For the past seven years, Peter Thorn has thrived under his National Disability Insurance Scheme (NDIS) plan.
As someone who is non-verbal with autism, the support he receives allows him to live alone, volunteer regularly, go to the gym and be part of a Special Olympic swimming squad.
He has also been receiving overnight support — a time where he is most vulnerable.
But 10 months ago, he was told there was an "error" in his plan, turning his seven days of overnight support per week into seven days a year, without explanation.
"They just decided that he didn't need it anymore. For what reason? We don't know," his father John Thorn said.
"No interim measures were put in place or anything like that. It was just cut."
John said Peter could endanger himself if he was left alone at night, and support was essential.
"He would be vulnerable to anybody coming in the house … he wouldn't know what to do if there was a fire," Peter said.
"If we don't have it, we really don't know what we would do. He couldn't live here on his own."
Peter Thorn's NDIS plan was cut significantly due to an "error", his father John said. (ABC News: Jostina Basta)
During this time, their disability support provider, Hartley Lifecare, used their own funding to support the family as they tried to figure out a plan for his future.
"It's a real challenging situation when a decision is made, but there's no transition," Hartley Lifecare chief executive Eric Thauvette said.
"If we're looking at systems … or ways for Peter to try and communicate with somebody … that all takes time. It could take six months, could take a year."
After months of uncertainty and appeals, the decision was finally overturned, but Hartley Lifecare remain out of pocket.
NDIS cost model 'doesn't reflect the true cost' of operation
Mr Thauvette said Peter's situation was not uncommon, making it harder for the not-for-profit to remain sustainable.
But it is not the only challenge Hartley Lifecare said they had had to face with the NDIS scheme.
"The assumptions the NDIS have in the cost model don't necessarily reflect the true cost of what we provide," Mr Thauvette said.
"We can't figure out what we're going to have in the next six months, because plans come back and there are cuts to plans that we're not aware are occurring."
Peter Thorn's ACT Special Olympics ribbons. The National Disability Insurance Scheme client's plan was cut significantly due to an "error". (ABC News: Jostina Basta)
The organisation had to take drastic measures earlier this year to stay afloat through an organisation-wide restructure.
"In the last four years ... we're about $6 million in deficit," Mr Thauvette said.
"We did have to do some redundancy payouts through that [restructure] process. We realised that if we did not do that and the funding was not being corrected, we would be insolvent by December this year.
"The last four years is the first time we see deficits because of the tightening of the funding, and it makes it really challenging when we can't predict what the plans are around the NDIS."
Mr Thauvette said this has had an impact on the quality of care for their clients, many of whom have highly complex needs.
"What we're seeing is that we're driving the quality down, and really the pricing is driving the quality down," Mr Thauvette said.
"We want to pay our employees what they deserve for the job they're doing."
Long-term and complex needs providers most at risk
Hartley Lifecare is not alone with their funding woes.
"I don't know any service providers that are not being challenged right now by the funding issues," Mr Thauvette said.
Hartley Lifecare CEO Eric Thauvette says the disability provider has had to make drastic changes to keep the organisation afloat. (ABC News: Michael Barnett)
Members of Australia's peak industry body for disability service organisations, the National Disability Service (NDS), are saying they're struggling to remain viable within the current model of the NDIS.
Both in the ACT and nationally, more than 70 per cent are considering either reducing or closing their services, according to one of their recent surveys.
NDS Territory Manager for the ACT Jo Huxley said pricing often came up as the main concern for disability providers.
The ACT was one of the first regions in the country to trial the NDIS scheme 10 years ago — promising to be a beacon of hope for the industry.
But Ms Huxley said costs had been compounding year on year.
"It's no coincidence that the providers who have been operating the longest, are the ones that are saying that they're really at risk of being unsustainable into the future," she said.
The overwhelming administrative load placed on providers is also not funded.
"It's not an efficient system, and so much money is being put into back-of-house roles to cover those additional administrative costs," she said.
National Disability Service ACT manager Jo Huxley says providers for those with complex needs were most at risk. (ABC News: Jostina Basta)
Ms Huxley said the ACT had a dual regulatory environment, which meant they submit double the paperwork.
"Registered providers here have to report to the National Commission, but they also have to report the same thing to the ACT government," she said.
"In terms of efficiencies and cost savings, you're doing the same thing twice … that's time and money and people that have to do that reporting."
Ms Huxley said the organisations most at risk were those supporting people with complex needs.
"The disruption on their lives if services were to cease would be really, really significant," she said.
"It is administratively difficult. They've got to go and find a new provider and negotiate whether they can be supported," she said.
Some providers already cutting back on their supports
Koomarri is a disability provider that has been operating in the ACT since the 1960s.
Two months ago, they announced they would have to cut back on the range of supports they provided through the NDIS.
"After a decade of the NDIS we are simply no longer able to subsidise the government's funding gap, and we will not compromise on quality," Koomarri said in a statement.
As part of this cut, Koomarri let go of 66 disability clients and 60 staff — half of whom were employees living with a disability.
Richard Franz lost his job after disability support not-for-profit Koomarri decided to cut back its services due to financial challenges. (ABC News: Jostina Basta)
One of those impacted was Richard Franz, who lives with disability and worked at Koomarri for 29 years as a gardener.
"Being at Koomarri for that time, it's really been a part of Richard's identity," Richard's sister Helen Franz said.
Working at Koomarri allowed Richard to live a fuller life, and he was devastated when he found out he needed to find a job elsewhere because of the closure.
"It's outside in the fresh air, instead of me staying inside watching television, and I can meet other people too," Mr Franz said.
"It will be so much different in my life, and I don't know what to do."
After two months of searching, he found a job at another gardening service.
His family hope he will adjust to the change, and be able to rebuild his life after many years.
"Having a disability, it is that little bit harder. Richard says he will struggle with routine," Ms Franz said.
"He has a level of [obsessive compulsive disorder], so he will struggle."
Richard Franz with his sisters Pam and Helen. (ABC News: Jostina Basta)
Change needed to overcome 'significant challenges'
Ms Huxley said the industry had been talking about how to improve the scheme for years, and called for changes that would allow the NDIS to do what it set out to do.
"NDIS is an absolutely incredible scheme in terms of its original promise. It was putting choice and control into the hands of participants," she said.
"But there's significant challenges right now in the scheme."
A spokesperson from the National Disability Insurance Agency said it "works with participants to ensure a smooth transition to alternative provider arrangements of their choice", and that it is working on "a new pricing approach in 2025" that will meet participants' needs and be sustainable".
"In September, the Minister for the NDIS announced a new Independent Pricing Committee to review NDIS pricing approaches and recommend changes designed to lead to a higher quality and sustainable disability provider market," the spokesperson said.
"The Committee has commenced work, aiming to make its first recommendations to the NDIA Board by the end of this year, with further recommendations in February 2025.
"The advice will be used to support the development of the 2024-25 Annual Pricing Review."
Mr Thauvette said providers were not asking for more money to be poured into the scheme, but rather, for it to be used more effectively.
"The money is there for us to be able to do it better, and we need to work closely with government," he said.
"They need to work with service providers and individuals to be able to provide the scheme in a better, more efficient way."
Editorial: stories like this, even though it may not show the NDIA in a good light, are strongly influenced by government media people. For example, review of the NDIS pricing guide is largely irrelevant when people have their services cut. The price that the NDIS will pay for a service is irrelevant when the service is no longer in the participant's plan, or the person is no longer a participant. The NDIA's response in this shows their lack of ability to even appreciate the issues they have caused or are causing.
NDIA claims (in this article and recently in the Australian newspaper) that it "works with participants to ensure a smooth transition to alternative provider arrangements of their choice" are clearly rubbish, as the story shows.