‘I just want to survive’: Adelaide grandma with cerebral palsy forced to hold bladder for up to 12 hours a day

Grandmother Jean Mathews, who has cerebral palsy, is forced to hold her bladder for up to 12 hours a day after a devastating support package turn.

A Gilles Plains grandmother with cerebral palsy is unable to go to the toilet for up to 12 hours a day after being moved to a disability support package that can’t afford the care she needs.

Jean Mathew, a wheelchair user who lives alone, can only afford two care visits per day - one in the morning and one before bed - to help her use the toilet after moving to the federal government’s Home Care Package earlier this year.

Forced to hold her bladder all day, the 76-year-old said there simply “isn’t enough” funding under the package, which is capped at just under $60,000 annually, to support her needs.

“It’s only been a few months, and I’ve almost run out [of funds],” she said.

“I can’t afford to pay for the care I need on my own – I can’t get myself in or out of bed or take myself to the toilet.

“I’m forced to sit on a full bladder all day which is really painful, it’s frustrating.”

76-year-old Jean Mathew, a wheelchair user who lives with cerebral palsy is unable to go to the toilet for over 12 hours a day as a result of a 'cruel' Govt funding move. Picture: RoyVPhotography.

Ms Mathew is part of a cohort of older Australians living with disabilities that were recently moved to the package from the Disability Support for Older Australians (DSOA) – a program to support those who weren’t eligible for the NDIS scheme once it was rolled out due to their age.

But she says she was “tricked” into signing a document to move to the lower funding package and is now struggling after having her care visits cut to two per day, down from three.

“I’d rather be on DSOA so that I get my midmorning shift back and the fact that I wasn’t even told that it was being taken away that really is not fair,” she said.

“I just want to survive because that’s all I’m doing now, only having [visits] twice a day.”

She is one of many older Australians with disabilities falling through the cracks. Picture: RoyVPhotography.

National Disability Services CEO Emily Forrest said this “awful” situation could have been avoided if there was more transparency.

“No one should feel like they are being tricked out of accessing the supports they need,” she said.

“Stories like this show how people are falling through gaps in the system.”

A review into the NDIS last year called for more support, including combining the scheme with DSOA so that people with disability can access both the NDIS and aged care system concurrently after turning 65.

Ms Forrest said this would help older Australians with disabilities like Jean to get the support needed to live independently.

“We owe it to older people with disability to ensure that they get the support they need to remain independent and live in their communities as long as they want to, for as long as possible,” she said.

Disability advocates say more needs to be done to ensure older Australians with disabilities are able to access support they need while living independently.

A spokesperson for the Department of Health and Aged Care said that they are “investigating the circumstances raised.”

“Services delivered under Home Care Packages are through an individualised care plan that must be agreed with the client,” they said.

“Home Care Packages are regulated by the Aged Care Quality and Safeguards Commission, based on requirements for providers established under the Aged Care Act 1997. This includes quality of care principles.”

Originally published as ‘I just want to survive’: Adelaide grandma with cerebral palsy forced to hold bladder for up to 12 hours a day