‘It literally breaks you’: fight for denied NDIS support dominates 22-year-old’s final months

Toby Tyne would look out at the glistening water on the other side of the window.

For about 12 months the 22-year-old had been unable to get out of bed. The only way he'd left the family home in Kempsey, New South Wales, was in an ambulance.

"He dreamed of being able to just literally float in the pool," says his mother, Angela Tyne. "But I don't think he ever thought it would happen. He thought, 'They're not going to approve it.'"

Believed to be the first person in the world diagnosed with spondylo-ocular syndrome, which causes cataracts and severe bone fragility, Toby was stuck in a years-long battle with the agency running the national disability insurance scheme.

His brother, Hunter, who has the same disability, says Toby's bones were so brittle he once fractured a finger scratching his back. Four years earlier the Tynes had first requested the agency pay for a pool hoist to allow Toby and Hunter to use the family pool for hydrotherapy.

But Toby never made it into the water.

"For someone that was bed-bound, getting into that pool would increase his mobility," Hunter says. "And it would have given him access to outside the house and let him spend more time with family."

The future of the national disability insurance scheme has emerged as an election issue. While the political debate surrounds the increased cost given the scheme is forecast to cost $34bn this financial year, stories abound of arbitrary cuts to funding packages. There has been a 400% increase in appeals to the administrative appeals tribunal.

Guardian Australia has reported extensively on how organisations that support people like Toby are swamped with cases. Many have been forced to close their books. Waiting times for an AAT decision have blown out.

"It's more like civil litigation, going up against lawyers," says Toby's advocate, Belinda Horne, who notes she is not a trained lawyer. "Like if I had a broken arm, I could go to the doctor and show up. I don't have to go to a solicitor."

Toby lodged an appeal in October last year. His denied funding included the ceiling hoist for the pool, registered nurse care, psychology and physiotherapy. His appeal was one of 555 that month, a threefold increase compared with October 2020.

By then Toby's condition had deteriorated, as his younger brother had noticed.

Hunter looked up to Toby, describing his brother as someone who "would take a bullet for me". Unlike Toby, Hunter is able to leave home using a wheelchair outside the house, though he would also benefit from the hoist to safely use the family pool.

"He taught me that what happens in life is a part of life," says Hunter. "You've got to just roll with the punches."

As his condition worsened, Toby lost his eyesight in one eye. He lived in constant pain and the fear one wrong move, even in bed, would lead to another fracture, as it had several times already.

Toby was particularly animated about the need for more hours of registered nurse care.

Angela Tyne, a single mother, was a 24-hour carer for her 22-year-old son. She needed to be home to administer his medication, classified as schedule eight.

A registered nurse would be able to step in, hence the request to the NDIS, but Toby's disability support workers could not.

"He was the one to say, 'I'm bed-bound, and what Mum has to do, she should just be Mum,'" Horne says. "Really, he was just worried about his mum.'"

Without the registered nurse funding, much of the care was down to Angela, who Hunter describes as their "rock".

"She is always there to help when we need it," Hunter says. I don't think we could have asked for a better person to put us on this journey."

In October, Horne asked for Toby's appeal to be fast-tracked. "Mr Tyne's matter is considered to be extremely urgent, complex, and in his words: ''a matter of life and Death'," Horne wrote in the appeal.

By December the NDIA, represented by solicitors from a national private law firm, sent the Tynes a long list of detailed questions for Toby's specialists to answer. The agency has spent $30m on private legal representation since July 2021.

Some of the NDIA's arguments, contained in documents lodged with the tribunal, incensed Angela Tyne.

The NDIA suggested the pool hoist was not "value for money" because Toby's "functioning [was] expected to improve with recommended physiotherapy/hydrotherapy".

Horne says Toby "just laughed" at that. "He was past the point of reacting, he knew it was an absurd process."

By March, Toby's specialists had filed their responses to the NDIA's questions and Horne lodged them with the AAT. They awaited the NDIA's response, and a possible conciliation.

But there was to be no hearing. Five months after the appeal was lodged, Toby died in hospital.

"He had made the decision probably six months prior to no more medical intervention, being antibiotics or anything that would prolong his life," says Angela Tyne.

"He had another hip fracture, just spontaneously in bed, and ended up in hospital. And he never came home."

The Tynes are grieving the loss of a "funny" and "kind" man whose big presence filled their family home.

"It's a big house and now it just feels like three times bigger," Angela says.

But the fact those final months were made all the more stressful due to Toby's battle with the agency compounds the grief.

Tyne can't understand the NDIA's refusal over many years to fund the pool hoist. She says an initial request would have cost $100,000, but later they requested a cheaper model at $35,000. While many associate the NDIS with providing care, it is also about helping people with disability participate in the community and reach their goals.

She believes improving his mobility and quality of life might have prolonged it.

"That could have given him some comfort," says Tyne. "His pain was extreme."

"They said to do hydrotherapy, but he can't get into the pool without the hoist."

An NDIA spokesperson said the agency expressed its "deepest condolences to Toby's family and recognises the exceptionally difficult circumstances of this case".

"All NDIA planning decisions are made in accordance with the NDIS Act," the spokesperson said. "The NDIA fully respects a participant's right to request a review of any decisions made.

"It is important to note in this case the NDIS provided substantial funding of close to $400,000, including some home modifications to assist Toby in his home."

Hunter also faces his own difficulties with the NDIS. His requests for additional therapy and support work hours have been denied.

He says Toby "kept fighting because it was what he thought was the right thing".

"As Toby would say, 'We, as people who have disabilities, are the only people who know what we need to survive.'"