It's Rayna Lamb's electric wheelchair that allows her independence, but it's the cushion in it that makes her comfortable.
So after using her current cushion until it was almost flat, she turned to her National Disability Insurance Scheme (NDIS) funding to buy a new one.
The 49-year-old Perth resident lives with cerebral palsy and needs a custom-made cushion so she can sit upright and free of pain.
But replacing her worn-out cushion was far from a simple process.
It started with a two-hour assessment by an occupational therapist before trialling a new cushion.
Ms Lamb became frustrated when she was told she needed to pay the occupational therapist (OT) to complete an 18-page evidence document for the National Disability Insurance Agency (NDIA), which runs the NDIS, to approve the spending.
"I was accepted onto the scheme for my cerebral palsy. The NDIA knows I have cerebral palsy. They know I use an electric wheelchair," Ms Lamb said.
"The 18-page report, my OT says it'll take her six hours to fill out and that will cost me over $1,000.
"That's funding which could be used for something else that could improve … my life as a person with disability."
Ms Lamb said the ordeal had been much harder and more expensive than it should have been.
"It's fine if [the NDIA] wants proof that a registered OT has assessed me, but it doesn't need to be 18 pages," she said.
'It's exhausting'
Ms Lamb's experience is not unusual. Participants often need to gather lengthy reports from allied health professionals when they need new support or equipment or their plan is reviewed.
Amid ongoing discussion about how to make the scheme more efficient, advocates are saying cutting this red tape would be a good place to start.
The government last week announced it would implement an annual growth target of 8 per cent for the scheme by 2026 to rein in costs.
The NDIS has been forecast to grow by up to 14 per cent over the next few years. Under its current trajectory, the annual cost is set to reach $97 billion by 2032-33.
NDIS Minister Bill Shorten has consistently pointed to the enormous positive impact of the scheme on its participants, but has also warned about its financial sustainability.
Payments for plan management services — such as helping participants with administrative tasks such as approving and paying invoices — reached $114 million in the December 2022 quarter, according to the latest quarterly report.
The NDIS price guide also stipulates allied health professionals can charge nearly $200 an hour to write reports about their clients' needs.
Anne Kavanagh, a professor who researches disability policy, said she understood the need to frequently provide evidence for children and those with fluctuating disabilities, but it was unnecessary for those with permanent impairments.
"Gathering that evidence costs the scheme a lot of money and diverts the therapist's attention away from giving the participant the kind of support that they need to flourish in life," Professor Kavanagh said.
Professor Kavanagh, the chair of Disability and Health at the Melbourne University School of Population and Global Health, has a 20-year-old son who is an NDIS participant.
She said having to continually gather evidence of his disability more than once a year meant they had less time to spend together.
"It's exhausting and it means that we don't get the time to just hang out with each other," she said.
Having to prove you're 'still disabled'
In an address to the National Press Club last month, Mr Shorten announced a plan to move away from short-term plans for participants.
"Frankly, it's stressful, debilitating, frustrating and nonsensical that – every year or six months – participants have to 'prove' they are still disabled," he said at the time.
On Thursday, he told the ABC's AM program the government wanted to put an end to excessive bureaucracy for participants.
But, he said, that would "require the cooperation of everyone".
"There is a culture among some service providers that if you present with an NDIS package that somehow it's government money and you can afford to pad the bill or take more time.
"It's taking from people with disability and denying them the opportunity to get better outcomes."
Mr Shorten reiterated the scheme was here to stay but it was important every dollar was "getting to the people for whom it was intended".
"I think with sensible reforms which involve people with disability and their families … we can improve the capability of the agency they're working with, stamp out unethical practices and tackle spiralling costs," he said.
In a statement, the NDIA said it was committed to improving the participant experience, and the government was "investing in the agency's capabilities and systems so participants only need to tell their story once".
Professor Kavanagh said a systemic shift to longer-term planning would be of great benefit.
"I look forward to the time when my son gets a three-year plan and we don't have to do this," she said.
Rayna Lamb's wheelchair cushion has now been ordered and she hopes the system is streamlined the next time she needs vital equipment.
"It's redundant to have people requiring reports that say the same thing," she said.
"It's a waste of taxpayer money and it's a waste of everyone's time."
