A pensioner is going without food and medication for days at a time while struggling to navigate the bureaucratic red tape surrounding the National Disability Insurance Scheme.
Gastroparesis sufferer Maria O’Hara, 61, has spent more than 16 months going back and forth with the National Disability Insurance Agency (NDIA) but has yet to be approved for disability funding.
She said she’s provided the agency with every medical document dating back to 1983 but “they just keep wanting more and more and more”.
Calling the process a “nightmare” that’s made her not want to wake up some mornings, Ms O’Hara said she keeps having to unnecessarily send off medical documents and answer questions that have already been asked “in the hundred or so reports” to the NDIA.
The Commonwealth was accused on Friday of withholding $1.7 billion in accumulated funds for the NDIS, which were aimed at helping people with disabilities “reach their full potential”, The Age reported.
Only after The New Daily enquired with the NDIA about Ms O’Hara’s situation did she receive a phone call from the federal agency.
She said the NDIA apologised to her “for all the mucking around” and she now has “a single person and her phone number to ring to keep in touch”.
- Related story: Pharmacists to soon start prescribing antibiotics
Without NDIS support, the former aged care worker worries that she’ll keep having to compromise her health to stay financially afloat.
“At this moment I’m trying to decide if I pay my electricity or order my liquid food that I so desperately need,” she said.
Ms O’Hara said her feeding tube causes between one and six litres of stomach acid to leak every 24 hours, leaving her with severe burns because she can’t afford enough wound dressings.
So, she reaches for incontinence pads and tea towels – but that’s never enough.
“I’ve got mass photos of the burnt skin,” she said.
Because her chronic condition leaves her stomach muscles paralysed, Ms O’Hara gets fed liquids through a tube that connects to a pump tethered to her stomach.
Ms O’Hara said she recently went three days straight without ingesting anything.
She “quite often” deprives herself of the liquid food so what’s left can be spared for as long as possible.
The recommended amount is two litres but Ms O’Hara said she tends to have only about one litre daily.
“I’m still using one that should have run out on the 16th of January. That’s how long I’m spreading it out,” she told The New Daily this week.
She’s also cut back her chronic pain medication.
“Sometimes I’ll go without it and suffer the pain because I can’t afford to get it,” Ms O’Hara said.
Sleep offers little respite for the chronic back sufferer who has to tuck herself into uncomfortable semi-upright positions to avoid choking to death on acid reflux.
Living solely off her disability pension, Ms O’Hara has reverted to sleeping in a chair because she can’t afford a new, more appropriate bed.
- Related story: Women frailer but more resilient, study says
Justin Scanlon, managing director of NDIS provider Hearth Support Services, accused the NDIA of pushing disabled people and their families to “breaking point” before getting them help.
“That frustrates me that people are pushed to the edge before they get the right support,” he told The New Daily.
In a statement, an NDIA spokesperson said the agency will continue to work with Ms O’Hara.