‘Comedy of errors': NDIS reform leaves disabled Australians fearing what comes next

The Guardian

26-01-2025

For people with disability, the end of 2024 was a rollercoaster.
New legislation for the National Disability Insurance Scheme started coming into effect in October, with new lists of what can and can't be funded, changes to early intervention requirements and more, already altering the way some 646,000 people receive support from the $35bn program.
The reforms are not yet complete, though, and March is shaping up to be crunch time: that's when consultation is expected on things like the support-needs assessment tool – a framework for determining a person's impairments and how much public money should be allocated to them. But the timelines are so tight, and the space for consultation so narrow, that advocates say the promised co-design on critical parts of the new system is all but impossible.
So-called 'foundational supports', to be provided by the states and territories and agreed upon by national cabinet more than a year ago, are supposed to be in place by 1 July. But despite the new legislation already restricting access and support to the NDIS, there is very little agreement on what those foundational supports actually are, let alone the architecture in place to provide them.
Throw in a new NDIS minister and a looming federal election, and anxieties in the sector are high.
Making it worse is the undercurrent of palpable fear from people with a disability that they will receive a letter from the National Disability Insurance Agency (NDIA) telling them they may no longer be eligible for the scheme that has been a salvation for many – and which they were told would be for life.
This is the context in which a decision by the Administrative Review Tribunal came this month, calling into question the legal basis for the NDIA's practice of reversing the onus of proof of eligibility and placing it on to participants.
Veronica Stephan-Miller, the woman at the centre of that case, says her recent engagement with the NDIA has been so stressful that at times she stopped eating.
Stephan-Miller, who has fibromyalgia, chronic fatigue syndrome, ischaemic heart disease and ankylosing spondylitis, received notice that her eligibility was under review in March last year. The NDIA mails these notices, giving participants 28 days from the letter's date-stamp to respond with more information or they will make a decision based on what they have.
'I have a PO box,' says Stephan-Miller. 'And at that time I wasn't getting my mail regularly, so it was 10 days before I actually picked the letter up. I went into panic mode.'
The rheumatologist Stephan-Miller needed to see was booked out for months and it was 'a comedy of errors' trying to secure an extension to the 28-day timeline. A disability pensioner, she had to crowdfund to pay for the new assessments. All the way through, she kept trying to find out precisely what information the NDIA was lacking.
'I asked 'What do I need to submit?' I asked the plan reviewer. I asked the assessor. I emailed the office of the CEO, and they would not give me a definite answer,' Stephan-Miller says.
The opaque and time-sensitive nature of the reassessments is not only alarming but can border on the absurd: one advocate told Guardian Australia of a person whose eligibility was reviewed not due to lack of evidence of their permanent disability, but because the agency didn't have a copy of their ID on file – a fact that only became clear after repeated inquiry.
People with disability say this practice of reversed onus of proof, which began before the new laws came into effect, has shades of the robodebt fiasco – in which welfare recipients were forced to prove they did not owe a debt to the commonwealth, rather than the commonwealth proving that they did – and it's just as distressing.
It's frustrating, too, for the allied health workers who provide the documentation, particularly functional capacity reports, that the NDIA uses to determine eligibility and funding levels.
Muriel Cummins, founding director of Occupational Therapy Society for Invisible and Hidden Disability, says 'the pace of reform is going at an absolute gallop' but allied health professionals have been left entirely out of the loop by the government and the agency, despite the critical place of their work in the system.
'We're seeing people who have conditions like [multiple sclerosis] and Parkinson's, which are lifelong, permanent and often degenerative conditions, receiving notices for eligibility reassessments. It's a real shock for the participants, and it's also a real challenge for us as therapists to understand what the NDIA is actually asking for,' Cummins says.
Anecdotal reports suggest eligibility reassessments are often triggered by plan review requests, and at a Senate Estimates hearing in November last year, NDIA acting chief executive Scott McNaughton seemed to confirm this. Not only was the agency prioritising 'unscheduled reassessments' of eligibility, he said, but they may be triggered by the planner. He also disclosed that 1,200 NDIS participants, mostly children, were being reassessed every week, with nearly half of them booted off the scheme.
Jeff Smith, chief executive of Disability Advocacy Network Australia (Dana), says without foundational supports in place to catch them, the sudden removal of NDIS access has profoundly negative consequences for people.
'The approach here might be OK under the letter of the law, but it certainly breaks the spirit of the legislation. It's certainly inconsistent with the idea that the changes that we make will take place in lockstep with the implementation of foundational supports, so that people are looked after under some system or another,' says Smith.
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Dana wants the NDIA to 'slow things down' and extend all the timeframes to at least 90 days.
There are problems on the provider end, too. Rodney Jilek, founding director of Community Home Australia, says ongoing delays in plan reviews are leaving participants without funds and putting providers in the position of being forced to withdraw care.
Jilek's Canberra-based not for profit provides supported homes for people with neurocognitive disabilities, often progressive, who require round-the-clock care. But at Christmastime he had to make the decision to move a client with Huntington's chorea to a hospital after waiting for a plan review for around six months.
'His care needs were through the roof. He exhausted all his funding … and we were just told, 'Oh, well, you just have to provide care for free'. That's $11,000 a week,' Jilek says.
'We kept doing it for as long as we possibly could. In the end, I rang the NDIA and said, 'I can't keep doing this. I can't provide supports for free'. And they said to me, 'Well, why are you doing it?' They said, 'You need to make a business decision and withdraw care, withdraw supports'. So I did. I sent him to hospital, and he got a new plan within 24 hours.'
The experience was 'incredibly upsetting for everyone,' Jilek says.
In addition, Jilek says the agency's focus on possible provider fraud has caused such a bottleneck in payment of accounts at the NDIA that he found himself $540,000 short at the end of last year. While the NDIA has caught up on many of the payments, the delays have had ongoing implications for his tax affairs.
'I had to take out a cashflow loan just to actually pay people because we were owed so much money,' Jilek says. 'I kicked and screamed and I virtually cried on the phone … I had to put in $450,000 of my own money to keep the business afloat, because we were basically bankrupt.'
In response to questions from Guardian Australia, the new NDIS minister Amanda Rishworth said she was in the process of arranging meetings with representatives of the disability community to discuss matters related to the scheme.
'I take any allegations of misconduct or unlawful practices very seriously, and I have sought advice from the NDIA on their eligibility reassessment processes and evidentiary requirements to understand the issues raised,' Rishworth said.
A spokesperson from the NDIA said the additional 1300 frontline staff recruited in the last financial year had reduced delays, and that the investment was continuing.
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