The family and supporters of a young man with muscular dystrophy who died earlier this month are calling for flaws within the National Disability Insurance Scheme to be addressed in light of his suffering.
The NDIS helped Brisbane university student Jack Bailey live his short life to the fullest - but the scheme also failed him when he needed it the most, his supporters say.
"Through the scheme, Jack achieved his goals of moving out of home, living independently, studying at university, and becoming a vital, contributing member of the community," Jack's parents Deborah and Darryl Bailey said in a statement.
"However, the system is not without flaws. Bureaucracy, red tape, and incompetence caused Jack significant stress and anxiety, ultimately placing him at unnecessary risk."
The 19-year-old was living with late-stage Duchenne muscular dystrophy, a degenerative muscle condition, when he died on August 11.
Bailey's occupational therapist, Izzi Harman, told 9news.com.au she had been urgently requesting he be given NDIS funding for 24/7 support since November last year, saying his life was being put at risk without it.
The teenager needed a power wheelchair to get around and had very limited muscle movement in his body, Harman said.
"He could not scratch his nose by himself, he couldn't get himself out of bed," she said.
While the specialist disability accommodation Jack was living in did have an on-call help service, the support was not sufficient to meet his needs, Harman said.
"When you can't roll yourself in bed, you really need someone there 24 hours a day, in case something happens," she said.
"If he dropped his phone from his lap, he wouldn't be able to go get it and call for help.
"So I submitted a functional capacity assessment with a full risk matrix saying there was a very high risk of mortality if Jack didn't have 24/7 care."
Harman said the NDIA did not respond to the request and, in June this year, Jack suffered a major cardiac incident while alone in his apartment.
"He barely managed to call for help before losing consciousness, and his survival was nothing short of miraculous."
Jack's parents submitted an official complaint to the National Disability Insurance Agency (NDIA) over the incident.
However, at a meeting with an NDIA planner weeks later - attended by Jack's parents, Harman and his support worker - Harman said the planner did not even appear to be aware of his close call, and had read none of the documentation they submitted.
An NDIA spokesperson told 9News.com.au the agency extended its deepest condolences to Jack's family and acknowledged the incredibly difficult time they have faced.
"Jack had continual NDIS supports, including support each day and access to funding for additional on-call support as required," the spokesperson said.
"Jack's NDIS plan which commenced in May 2024 was valued at over $531k."
When Jack died in his apartment, there was a support worker present.
However, Jack's mind was on his NDIS plight right to the end, Harman said.
Just minutes before Jack died, he texted Harman, asking about a letter she had written to NDIS minister Bill Shorten highlighting his case.
"He texted me at 10.26am and asked if there had been any reply to the letter, and his fatal cardiac episode started at 10.30am - so it was quite literally the last thing that he ever did," she said.
Following Jack's death, Harman started a Change.org petition calling for NDIS reform.
While it was impossible to say whether the lack of 24/7 support hastened Jack's death, the extra stress had likely taken a toll, Harman said.
"When you are so stressed about who's going to wake you up in the morning, and if you're going to have someone there when you have a cardiac episode, that puts a lot of pressure on an already damaged heart.
"Even after he had such a near death experience, they were still not giving him what he needed, and I can't imagine how hard that would have been for him, on his body and his fatigue, the emotions of it."
Harman said Jack, who also worked for her as a lived experience advisor, was a "trailblazer" who left his mark on the local disability community and would be sorely missed.
While studying a double degree of arts and social studies at University of Queensland, Jack was also the head of the social committee at the Queensland Power Chair Football Association.
Harman said one her proudest achievements as an occupational therapist came a few months ago when she helped Jack get on a surfboard a few months ago.
"That was something that was a really big risk for him. And no-one with DMD (Duchenne muscular dystrophy) has ever really done that before," she said.
"But that's what he was like. He was a trailblazer. He was a 'yes' man. How do I make it happen? He would just go out and do it. He was so awesome."
"The NDIS enabled so much of what Jack did. We don't want the NDIS to fall apart, we just want them to refocus on the participants."
Jack's parents said they hoped lessons could be learned from their son's case.
"Although Jack is no longer with us, we want to ensure that we learn from his experiences and that his legacy of a life well-lived, supported by the NDIS, continues to inspire," they said.
Jack's story comes after a major and contentious NDIS reform bill was passed by the Senate last week with support from the Coalition.
The legislation, which aims to curb the soaring cost of the NDIS by $14 billion in four years, has been met with criticism from disability advocates who are worried this will result in cuts to services and supports.
The savings will be found by having the states and territories take on responsibility for some aspects of the scheme, addressing fraud in the system, and using defined lists for what supports those on the NDIS can access with their plans.
