'My children have no mother': Kathy Layton was killed by a system designed to help

The 56-year-old spent months fighting National Disability Insurance Scheme [NDIS] bureaucracy in an attempt to secure funding for her son, Jason, who has complex disabilities.

A new plan for Jason was finally approved on May 15, 2024, but later that evening, Kathy suddenly collapsed.

When talking about his late wife, Wayne Layton finds it difficult to hold back tears.

"Kathy went from the most positive bubbly person, to not wanting to take calls from anyone," he said.

"Kathy stopped eating and would not often leave our bedroom apart from tending to Jason when I could not.

"I was watching my wife wither away, both mentally and physically in front of my eyes, her personality became the exact opposite of what it was."

35-year-old Jason Layton's complex disabilities mean he needs 24-hour assistance with all areas of life.

In the months leading up to Kathy's death, the Layton family had been trying to seek an urgent plan review with the NDIS, as funding they received for these supports exhausted without warning.

This left the family owing tens-of-thousands-of-dollars in laundry and disability support accommodation services, and meant the entire burden of caring for Jason fell on Kathy and Wayne Layton.

Despite pushing for an urgent plan review, the family often had their appointments cancelled, and had to wait months before the problem was addressed.

"I can't believe it's a coincidence that Kathy held on to the very day our disabled son's NDIS plan was finalised," Mr Layton said.

"She always put Jason's needs ahead of her own, she would do absolutely everything and anything for him."

University of New South Wales professor Helen Dickinson, whose research specialises in public services, said plan review periods, such as what the Layton family went through, were times of "extreme anxiety" for NDIS participants.

In addition, she said the disability community was already stressed the federal government would start cutting people's supports, as part of plans to make the NDIS "more efficient".

"When you've got services and you've got supports in place, you get really worried that different decisions get made about plans, then they might fall apart in some sort of way," she said.

Ms Dickinson said part of the reason reviews were so stressful for participants was because they didn't receive a draft of their plan before it was finalised.

This meant people went into high-pressure meetings, where if they didn't portray their situation perfectly, their funding might be cut.

"There's a lot riding on the meetings that you have with the planners, and you've been able to articulate what it is that you need," Ms Dickinson said.

"If those kinds of meetings or those conversations don't go well, you can get an outcome that isn't great sometimes."

When plans are suddenly reduced or exhausted, Ms Dickinson said it could have a huge effect on both participants and their families and friends.

"Only 14 per cent of Australians with disabilities are on the NDIS, so you've got to be able to demonstrate a significant level of support for that," she said.

"People spend significant time and effort putting into place supports so the individual, but also their families, can live in the sorts of ways that they want to."

When Jason's funding ran out at the start of 2024, Mr Layton said he and Kathy's lives suddenly changed.

A lack of support across Jason's life, but particularly in the months where they lost funding, caused the Laytons to become isolated from the rest of the world.

"My wife was more or less housebound for 15 years, no one on this earth can sustain that type of seclusion without it impacting them mentally and physically," he said.

"I'm now a widow, my children have no mother, my grandchildren have no nan, where does this end?"

One of the few support services which could help Kathy and Wayne Layton care for their son was Ross Creek Respite, in Ballarat, Victoria.

The short term care accommodation service was providing Jason with care multiple times a week, and included both day trips and overnight stays.

Ross Creek Respite owner Ken Dyer said his business continued to support the family through the start of 2024 even though they weren't getting paid, as he knew the situation was putting Kathy's health at risk.

He estimated he's now $57,000 out of pocket, but this paled in comparison to what the Layton family had endured.

"While we provided support mum started to look really healthy, really upbeat, she ate and mowed the lawns, but from the 10th of February [when services stopped] up until last Wednesday [May 15], you could actually see the deterioration in her again," he said.

"The burden of caring [for someone without supports] for 24, 48 hours in a row, that burden just wears, and wears and wears.

"It got to the point where mum had just had enough, and she wasn't really even answering the phone to a lot of the specialists that were trying to contact her to help, because she was thinking 'we've got no money'.

Another business, Ballarat Laundry, contacted ACM's The Courier in the wake of Kathy's death to say they were owed about $10,000 by the National Disability Insurance Agency [NDIA] for services performed for the Layton family.

Ballarat Laundry have since been paid, but Ross Creek Respite is still owed tens-of-thousands-of-dollars, despite being assured by an NDIS Local Area Coordinator it would receive the money when it provided Jason with services.

Mr Dyer said he had given up hope of being paid the money, but in the wake of Kathy's death, Ross Creek Respite would continue to help the family, as he knew what the Laytons had gone through.

Since his wife's death, Mr Layton said he had contacted the offices of both NDIS Minister Bill Shorten and federal Ballarat MP Catherine King.

He said he hadn't received a response from either.

When ACM contacted Mr Shorten and Ms King for comment, they referred all questions to the NDIA.

In response, an NDIA spokesperson statement said the agency's priority was to ensure every participant had the supports they needed, they were attempting to contact the Layton family and a new plan for Jason Layton had been approved.

They also said there were no longer outstanding payments owed to providers, but this is disputed by Mr Dyer, who said Ross Creek Respite was still owed about $57,000.

"The agency apologises for delays and is working diligently to improve wait times and to respond as quickly as possible," the NDIA statement said.

Despite receiving a new plan, Mr Layton said it was too little too late, as nothing would bring his wife back from the dead.

He said the treatment his family experienced in the lead up to Kathy's death, and the lack of response they had received since, was not good enough, and he knew of many who were in the same predicament.

"It devastated my wife's health, it's a disgrace that some carers are being forced to drop their loved ones off at hospital emergency, and are being told to do so if they can not cope," he said.

"The government needs to realise this is literally killing people, and it bloody well needs to stop.

"My message to Albanese and Shorten, although it's too late for my family, you can help other struggling carers out there.

"It would be total neglect if you don't, when will you realise what you may think works is a total disaster for the people actually using these services, wake up and listen to us.