Martin has experienced chronic pain in his limbs all his life, but it's getting worse.
"I usually only leave the house twice a week," the 26-year-old living in north-west Tasmania said.
"I've had to give up a lot of things, especially as it's worsened over the last year or so."
He now uses a wheelchair most of the time — he recently bought one for about $1,000.
But it is second-hand, so some pieces are missing and other parts are wrapped in duct tape. It also does not fit him properly.
Martin is on a disability support pension and receives funding from the National Disability Insurance Scheme (NDIS) for his autism, but not his physical disabilities.
That means he cannot afford things like a proper wheelchair, a ramp to help him get in and out of the house, or physiotherapy to manage his chronic pain.
Struggling to get a formal diagnosis
Martin is trying to prove his physical disabilities are life-long to hopefully have them added to his NDIS plan.
"I've not been able to prove at this point that they're permanent. In order to prove that it's permanent, you need to have a doctor say that it is."
He is currently on the wait list for an appointment with an orthopaedic specialist, but wait times for an appointment at his local hospital in Tasmania's north-west are nearly a year.
"They probably won't be able to say anything at the first appointment, and there's a good chance that they're going to refer me onto different specialists," he said.
"And I'll have to start the process of waiting all over again — it's very frustrating."
Martin's most recent attempt to get the NDIS to amend his plan was rejected due to "insufficient evidence".
He said the situation was "destroying" his mental health.
"It feels like I'm expected to crawl on my belly until I can prove I'm worthy enough," he said.
People 'falling through the gaps'
Disability advocate Jane Wardlaw said one problem people face trying to access and navigate the NDIS was consultations mostly occurring online or over the phone.
She said while this could be useful, people should have the option of an in-person appointment so the agency can see and understand their impairments and support needs.
"People are having plan reviews or trying to access the NDIS and there's no face-to-face meeting," she said.
"It's a really complicated scheme to access."
A spokesperson from the Department of Social Services said the government had allocated $20 million in the budget to consult the community on navigating disability services, including the NDIS.
"This consultation and design work will take place with people with disability, states and territories, and the broader disability sector, to ensure that any proposed navigation model is fit-for-purpose and able to meet the diverse needs of the disability community," they said.
Another issue, Ms Wardlaw said, was a shortage of specialists to certify that a person's disability was life-long and significantly impacting their life.
"There are a number of people who are falling through the gaps because they don't have the right evidence, or they need help to get into the scheme," she said.
She said that was "further exacerbated" by a funding cut to disability advocacy organisations.
University of Tasmania rural health lecturer Belinda Jessup said people on the NDIS and those trying to access it were hampered by allied health shortages.
"NDIS participants are typically needing to see three core allied health professions, which are physio, occupational therapy and speech pathology," she said.
"And so the shortages in OT and speech in particular are the ones that are impacting NDIS clients the most."
NDIS set to change
A review into the NDIS handed down in December last year recommended entry to the scheme be based primarily on impairment and need.
Martin would like to see the NDIS move away from the focus on diagnosis, so his NDIS plan can be expanded to include his needs relating to his physical disability.
"The disability isn't the diagnosis, it's the impairment, and it's the way that it affects you," he said.
While the federal government has not formally responded to the review, legislation to overhaul the NDIS is before the Senate. It aims to make eligibility clearer and reduce spending to ensure the scheme's long-term sustainability.
Speaking in parliament in March, NDIS Minister Bill Shorten outlined the amendments.
"Your needs assessment will look at your support needs as a whole, and we won't distinguish between primary and secondary disabilities any longer," he said.
"If over time your support needs change, because of a significant change in your function, your information can be updated with a new support needs assessment.
"The result will be a budget for disability supports that are fit for you, that reflects the support needs for your disability."
Lawyer disputes Shorten's claims
But Villamanta Disability Rights Legal Service practice manager Naomi Anderson said the draft bill actually legislated the NDIS's existing approach to focus on one part of their disability.
"We've had people saying that this is going to be a whole-person approach, but in fact, what the bill does is the exact opposite," she said.
"It will actually legislate the practice that the agency has been using, that has been found to be incorrect time and time again.
"It's bad enough that they do it now, it's also bad enough that they're proposing to put it in the law despite every recommendation being whole-of-person, not this primary disability nonsense."
Ms Anderson said the disability someone initially enters the NDIS on should not be the only impairment they can use their funding for.
"Because every impairment on top of that is compounding — it's not a separate thing," she said.
A spokesperson from the Department of Social Services said a needs assessment would be introduced under the amendment bill.
"While the assessment itself is holistic, funding for supports under the NDIS can only be provided in relation to impairments that meet the disability or early intervention requirements," they said.
"It is recognised that people's impairments and support needs can change over time, and there's an existing process outlined in the NDIS Act to vary or reassess plans where this occurs."
The consideration of the bill by the Senate was delayed until this month by the Greens and the Coalition, who said the government had not given experts and participants enough time to consider the raft of proposed changes.
'I'm not the parent I wish I could be'
Martin believes more support would make a world of difference for his quality of life.
"I effectively don't have much of a social life at all, I'm pretty much stuck in my house most of the time," he said.
He struggles to keep up with his active young son, relying on his family to help care for him.
"It's quite difficult on my son, I struggle to take him outside, I struggle to take him places," he said.
"That's probably one of the hardest things for me, that I'm not the parent I wish I could be."
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