Tracee Forth has been forced to bathe in public bathrooms, the spa in her backyard, or with a cloth at the kitchen sink for the last 18 months as she waits for vital NDIS support.
The 51-year-old from Hervey Bay, Queensland lives with a disability but was still able to get around and work until July 2023, when she suffered a fall in the shower.
It left her with two protruding discs in her spine, which required surgery and drastically reduced her mobility.
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Since then, she’s been unable to complete even small tasks like bathing or toileting without assistance from two people.
“I only really get out of bed for two separate two-hour periods during the day, so I’m basically bedridden now,” Forth told 9news.com.au.
Just a few months prior, she had applied for funding through the National Disability Insurance Agency’s (NDIA) to remodel her bathroom to make it more accessible.
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After the fall, she needed the modifications more than ever and sought to escalate her application. She also hired two more support workers to help her while she waited
That was 18 months ago, and Forth says she’s made no progress.
She currently relies on six support workers, plus her husband, to complete daily tasks and has had to resort to increasingly “undignified” approaches just to stay clean.
Immediately after the fall, Forth used the accessible bathroom at a local pool to get clean three times a week.
When the pool closed for renovations in March, she tried bathing in her outdoor spa, but the lack of privacy and her deteriorating mobility made it unsuitable.
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Forth then hired a mobile accessible bathroom, which was set up in her yard.
“It was like a horse truck that they parked out the back of the house, and the gradient was so high when I was coming down I went straight off, head-first off the wheelchair,” she said.
With no options left, Forth has spent the last several months trying to get clean with a damp cloth at the kitchen sink or in bed when the pain is too severe.
She’s also unable to access the toilet in her wheelchair, so has been forced to rely on a commode by her bed.
“It’s disgusting and disgraceful,” Forth says.
Despite multiple attempts to have her NDIA application escalated, Forth says she’s no closer to the accommodations she needs 18 months on from her first fall.
She’s seeking to build an extension on her home for a fully accessible bathroom, as there’s not enough space in the current layout to accommodate her needs.
She’s been quoted $120,000 and $135,000 by two separate builders. She is seeking $60,000 of NDIA funding to pay for the internal fit-out and accessibility features, including a walk-in bath that would allow her to bathe safely. Forth would foot the rest of the bill herself.
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Per the NDIS website, the NDIA “needs sufficient evidence” that complex home modifications like those Forth is seeking are “reasonable and necessary to include in a participant’s plan”.
It also states that the NDIA also does not generally fund home modifications that increase a building’s size.
But Forth says she can’t keep living the way she is currently.
She fears that without appropriate modifications to her home, and with her current NDIS plan running out of money to pay support staff, soon her only option will be hospitalisation.
“There’s a hell of a lot of depression setting in now. There’s only so much fight that a person can do by themselves before they just want to give up,” she said.
Jayne Solomons-Mitchell, one of Forth’s support workers, started an online fundraiser in the hopes of helping Forth get the support she needs after watching her deteriorate over the last 18 months.
“I feel like I’m banging my head against the wall,” Solomons-Mitchell told 9news.
“People get stuck in limbo between the medical and NDIS world, and people fall through the cracks. And Tracee’s not the only person that I know that’s falling through the cracks.”
Forth said she just wants to be able to bathe and toilet with dignity again. She’s holding out hope that her application will be approved, despite these setbacks.
“The NDIA’s priority remains the safety and wellbeing of participants, and we will continue to work with Tracee to ensure she has the disability-related supports she needs,” an NDIA spokesperson told 9news.
“Tracee has not provided appropriate evidence to the NDIA to support her application for home modifications.”
The NDIA did not provide further details regarding Tracee’s application or the evidence required for it to be approved.
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