Toowoomba woman Jo Coyne fighting NDIS over lost support services in plan, after son Thomas dies

A months-long battle with the NDIS has left a Toowoomba woman with significant disabilities in a dark place, unable to leave her home most days. NOTE: This story includes discussion of suicide and mental health conditions.

As Jo Coyne sits alone in her Toowoomba unit, unsupported for days on end, thanks to decisions by government bureaucrats, the dark thoughts in her head grow stronger.

“There are days where I just can’t even move,” she said.

“I was feeling suicidal, being told that I’m not value for money, that I’m worthless — I wanted to give up.”

The Toowoomba woman with complex physical, hearing and mental health disabilities has been battling the National Disability Insurance Scheme for months, fighting to restore critical support services she had just a few months ago.

Ms Coyne, who has bipolar disorder, struggles to walk physically and cannot hear in most public settings, has asked for the full return of basic services like occupational therapy, physiotherapy, cooking, cleaning and community access.

But she and her advocates say the NDIS has continued to delay, deny and withhold, with one report describing Ms Coyne’s requests for supports as “not value for money”.

The situation is so serious, complaints have been lodged to the department by Greens Senator Larissa Waters’ office.

Toowoomba woman Jo Coyne has been battling against the National Disability Insurance Scheme for months over her plan. She’s pictured holding a photo of her son Thomas, who tragically died.

Ms Coyne’s life was flipped upside down just two years ago when her son and primary carer Thomas tragically died, leaving her alone and in need of external support.

After a temporary boost to her NDIS package that covered much of what Thomas had provided, the services were cut at a review in March.

Ms Coyne now gets just four hours a day, five days a week, from one service provider to cover everything.

On weekends, she is stranded at home.

When she appealed the new plan, she said NDIS representatives told her to ring up local charities and join community groups.

“They took my cleaner, they took my occupational therapist, they took my social worker, they took my exercise physiologist, they took my podiatrist,” she said.

“They told me that it wasn’t value for money.

“Their way around (losing these services) was I should go to the neighbourhood centre and buy a plot at the community gardens to be around people.

“I said ‘I don’t do that because of my mental state and my hearing loss’.

“They said, ‘just do it’ – they’re not supposed to tell you what to do, it’s supposed to be about choice and control.”

Disability advocate Alyce Nelligan said the NDIS had failed to acknowledge Ms Coyne’s permanent change in circumstances after her son’s death.

“This should have been a permanent change of circumstances – her carer is deceased, there is no one living with her and no one to take care of her, so the NDIS needs to step up and fill that gap,” she said.

Alyce Nelligan. Picture: Kevin Farmer

“They said it was only to support her during her grief, and now that that’s ‘finished’, the funding has finished.

“She’s being left at home on a Friday afternoon and won’t have anyone come until Monday morning.”

Ms Nelligan said Ms Coyne’s situation was a common one for NDIS recipients, alleging the organisation treated people’s disabilities as if they were temporary.

“These are standard (services), she’s not no longer disabled,” she said.

“The (new Labor) government might be wanting to fix the NDIS, but the culture of the NDIS has always been about participants learning to do things themselves.

“Jo is deaf, she’s never going to get her hearing back.

“We’re just charity cases, we’re back to the old pity model of disability where they think we’re just a drain on society.”

Ms Coyne is preparing to potentially go to the Administrative Appeals Tribunal, the last resort for recipients battling the NDIS, after the appeal of her plan was rejected.

The plan review from the NDIS in May determined Ms Coyne’s requests had failed to meet the criteria of “value for money” and being “effective and beneficial”.

Toowoomba woman Jo Coyne has been battling against the National Disability Insurance Scheme for months over her plan.

This comes after months of regathering reports from her various doctors and specialists to prove she has the same conditions — costing thousands of dollars she didn’t have.

“If it hadn’t been for some bloody good friends and even people (donating) I didn’t know, I wouldn’t have been able to get these reports done and submit a review,” Ms Coyne said.

NDIS responds to Jo’s concerns

A spokesman for the National Disability Insurance Agency, which runs the NDIS, said it would continue to work with Ms Coyne on “capacity building supports”.

“The NDIA priority remains ensuring participants receive the disability related supports they need,” he said.

“The agency continues to work with Jo-Ann and her supports to ensure her needs are being met, including linkages with other services such as health.

“All available evidence, including reports provided by allied health professionals, are considered when applying a reasonable and necessary decision to a participant’s NDIS supports.”