People need to seek help if they believe they should be eligible for the NDIS.
People need to seek help if they believe they should be eligible for the NDIS.

'It's criminal': Advocate slams NDIS deaths in Darling Downs

DARLING Downs residents have died waiting to join the National Disability Insurance Scheme, according to a Toowoomba disability advocate.

Alyce Nelligan said she was aware of several local families who had lost loved ones while waiting for key equipment, while she herself suffered greatly while waiting 18 months for her own plan.

The comments come after News Corp this week reported more than 1200 people across the country had died during their transition from state services over to the national scheme between 2016 and 2019.

Ms Nelligan, who has a complex condition called minicore myopathy that severely affects her mobility, said the pathway onto the NDIS was torturous for people with complicated situations.

"The process to get onto the NDIS is actually very complicated. It's not streamlined," she said.

"Some people I know have absolutely given up, because they can't navigate the process.

"If you're complex, it takes longer because they want more information.

"It took me 18 months because I've got a complex disability.

"They didn't know anything about my condition and how it disabled me, and I wasn't giving them the information they wanted."


Alyce Nelligan.
Alyce Nelligan. Contributed

Ms Nelligan sat on a broken specialist cushion for months while waiting for her plan, and the loss of her physiotherapy caused intense pain, swollen legs and pressure sores.

But she said the issues didn't end once you were on the plan, saying the NDIS would often refuse equipment for people with terminal conditions like multiple sclerosis.

"It's criminal - when you get on, they will not fund certain things if you're terminal, like someone with MS or ALS," Ms Nelligan said. 

"I can confirm to you that patients have died waiting for equipment the NDIS will not pay for, because they were terminal.

"Maintenance and care will keep a person alive a lot longer.

"When they say they're not going to fund it, they're saying it's not a good return on investment. We are not an investment."

NDIS Minister Stuart Robert denied anyone had died waiting for the NDIS, calling the reporting of the figures "not even remotely correct".

The statistics came from the National Disability Insurance Agency in response to a question on notice in the Australian Senate.

Ms Nelligan said the entire scheme needed a complete overhaul to fix the systemic issues within it.

"People are dying because they can't hurry up with the care," she said.

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