Toby Tyne has spent the past year unable to leave his bed. The 22-year-old was the first person in the world to be officially diagnosed with spondylo-ocular syndrome – an astonishingly rare genetic condition that causes cataracts and extreme bone fragility. His brother Hunter was the second.
As the degenerative condition worsens, Toby’s support needs have increased. But earlier this month, he was one of at least hundreds of people who had their National Disability Insurance Scheme support funding cut by more than half. Others have had funding sliced by one-third or effectively halved as their annual NDIS plan budgets are stretched to two years, while the dollar value stays the same.
“Mum stays here all day,” Toby tells The Saturday Paper, “and they don’t think I need support because I’ve got Mum.”
Tyne has not been seen by any planner for about three years, despite the degenerative condition worsening significantly in that time. His latest plan has been slashed from $310,000 to $135,000 for six months.
“I feel like because I have got a disability I don’t mean as much as people without a disability,” Toby says. “My human rights are not met.”
As the federal minister for Government Services, Linda Reynolds, and those in charge of the National Disability Insurance Agency regroup following the historic rejection of plans to introduce mandatory “independent” assessments and algorithmic robo-planning, Reynolds persists with what she says is an urgent need for reform. The minister and her state and territory counterparts met again on Friday to plan further changes.
A preview of possible reforms was given during a senate committee hearing on August 5, where the minister was resolute on “some serious structural issues” emerging in the program.
“I want the scheme to endure. I haven’t talked to anybody in the community who has said they don’t want this scheme to endure,” she told the hearing.
“But it is very clear to me that reform is needed after eight years of operation. I have said to the states and territories – and I will reiterate this to them next Friday – that we need to make sure that we keep reforming this thing so that it not only becomes sustainable financially but is driving increased functionality for participants.
“I believe we need to do that before we enter into intergovernmental agreements with the states and territories.”
Reynolds’ initial reforms rested on so-called “independent” assessments – which would see people other than an individual’s doctor deciding the scope of payments, based on limited inputs into a spreadsheet.
Just weeks after that plan was scuppered, social media support pages were flooded with stories of people having their funding removed anyway.
“Approximately $20,000 cut from my boy’s plan,” one mother wrote. “We fought hard to get this funding in our last plan, only for them to ignore reports and last year’s fight and reasoning this year.”
Another participant wrote: “I feel you. I had over $120,000 cut from my new, two-year plan. I feel they can’t possibly have read any of the reports that took so much stress and time over weeks.”
The replies confirmed over and over again a similar tale: 40 per cent cut from one plan, $20,000 less for a young girl while the plan was doubled in length.
“So essentially it’s less than half the amount,” the mother said on a Facebook discussion page.
Another added: “Same happened here. Plan cut by 60 per cent and extended to two years.”
There are too many such responses to include in this article.
The NDIA has released further detail on its financial modelling in the latest quarterly update, but the figures often raise more questions than they answer.
Using the difference between future cost projections from a 2017 Productivity Commission report and what has actually been forecast in the Commonwealth budget, the agency says the NDIS will cost $11.8 billion more than anticipated over the next four years.
However, the same estimates for the previous four years confirm there was an underspend of $9.7 billion in the actual budget papers. What happened to this money?
“The difference in the 2017-18 to 2019-20 years between the PC estimates and the actual costs was not funding or money that was ever appropriated to the agency,” an NDIS spokesperson says.
In other words, the government saved itself a fortune.
In this year’s budget, released in May, the future spending for the scheme was mapped out in detail. Just two months later, NDIA scheme actuary Sarah Johnson released another report that appeared to show the costs were $22.5 billion higher than the forward estimates provided in that same budget.
Either the budget was wrong, or the new modelling is. Something changed in those two months. Perhaps it was the fight about independent assessments?
Minister Reynolds is clear that there is more work to be done to save money but she has ignored numerous suggestions from disabled people and advocates, which included a crackdown on some service providers.
The Saturday Paper has obtained billing receipts from one cleaning company in Western Australia that show it charged almost $9000 to perform a “deep clean” of a 150-square-metre home. This was not a Covid-19 matter but more akin to an end-of-lease clean, which typically wouldn’t cost more than $750 for a similar-size property. In another case the same company charged $3000 to clean a one-bedroom apartment.
A spokesman for the NDIA said “any provider who is found to be overcharging for services may be in breach of the Code of Conduct under the NDIS Act”.
Despite conceiving a debt-recovery strategy focused on participants who spend their support funding on “day-to-day living expenses” or otherwise “banned” supports, the NDIA’s monitoring tools for providers are patchy. In many cases, the agency does not see billing information and can only obtain data during an audit.
The agency announced earlier this year it is making the NDIS fraud taskforce – which includes federal police and other departmental members – permanent, but apart from a handful of high-profile charges and convictions, there has been little in the way of progress. Since 2019, there has been an increasing focus on participants.
A pattern of coming down hard on disabled people arguing for their own support needs and failing to keep up with dodgy or fraudulent providers is borne out elsewhere in the scheme. The most notable is the way it treats participants who have sought to review internal decisions before challenging the NDIA at the Administrative Appeals Tribunal.
In one particular case, the NDIA chose to spend its own money on flying an occupational therapist from Sydney to the Gold Coast in order to defend a tribunal case related to its rejection of home modifications for a blind man, despite having originally approved the proposed modifications.
The agency has declined multiple offers for settlement in the case, although internal documents, obtained by The Saturday Paper, show the home modifications were initially approved by an internal reviewer.
“External home modifications will allow [the participant] to continue living as independently as possible with improved social and recreational opportunities within his home environment which aligns with his goals and will reduce funded core supports in the longer term,” the reviewer wrote in a form dated in the middle of last year.
The reviewer notes there are “reputation” risks to the scheme.
Instead, the case is now set for a hearing at the tribunal. It is possible the agency will do what it almost always does when it faces losing at hearing: settling in private days or even hours before. It is a favourite tactic to avoid potentially embarrassing public losses.
New data shows just how frequently the agency settles after dragging a case through the tribunal but before a public hearing.
Of 4444 closed cases, it “resolved” all but 99 quietly and without a public decision.
Toby Tyne faces a similar fight, which often takes well over a year once internal reviews are requested. However, the 22-year-old doesn’t know how long he has. He has recently been made palliative. The NDIA took six months to approve a shower trolley that now allows him to be bathed properly instead of in his bed.
After five years of pushing, the agency still hasn’t moved on installing a specialised hoist that would allow him to move from his bed and into the pool the family already has for hydrotherapy.
“Having to do his care just takes away all his dignity,” his mother, Angela Tyne, says.
“He is looking at end-of-life care. I want to be able to be his mum and go through the whole process and be able to care for him on that level emotionally, as his mum.”
Minister Reynolds is right about structural issues in the NDIS. Many have been present for years now, often the result of poor planning from outsourced staff.
“Most people with a disability don’t have someone to advocate for them,” Angela says. “There are so many people who are just out there, unseen.”
This article was first published in the print edition of The Saturday Paper on August 14, 2021 as "Brutal scheme".
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