By Jewel Topsfield
The NDIS has given Penny Manning, who has cerebral palsy, a new lease on life.Credit:Justin McManus
The National Disability Insurance Scheme changed Penny Manning’s life.
It meant the 25-year-old, who has the most severe form of cerebral palsy, could afford the helpers and equipment to graduate from high school, sell Penny’s Doggy Treats – a peanut butter and honey treat taste-tested by her Cavalier King Charles spaniel, Princess – and co-author an upcoming academic paper on supporting families of children with a disability.
It also meant that three years ago, she could move into her own unit in Geelong, something that would have been an impossible dream before the NDIS.
“I am able to live my own life and not have to rely on my parents,” she says via a communication device funded by the scheme.
But now Manning is scared her independence is in jeopardy.
Penny Manning (right) joins a protest in support of the NDIS in Geelong in March.Credit:Justin McManus
Her mother, Elizabeth Manning, says Penny’s latest NDIS plan slashed funding for her support workers.
The National Disability Insurance Agency says Penny continues to receive a “significant amount of money”. But Elizabeth says the new plan had errors, including that Penny lived with someone else.
“When you ask me what will happen, the answer is I don’t know, because what they are currently doing can’t work,” Elizabeth says wearily.
“We have to go for an internal review and if that’s not successful, we will have to go to the Administrative Appeals Tribunal. More costs, more stress, more waste, more cost to taxpayers to try and squash us, and more exhausting rage.”
This year will mark the 10th anniversary of Julia Gillard’s introduction of the NDIS Bill – the greatest social reform since Medicare – into parliament. The scheme was designed to transform the lives of people with disabilities and their families by providing a nationwide system of care with enough funding to provide tailored, individual support.
But some argue the scheme has lost its way.
In recent months, there has been a series of horror stories about individual packages being slashed, a 400 per cent increase in complaints about NDIS plans to the Administrative Appeals Tribunal, and the National Disability Insurance Agency spending tens of millions of dollars fighting its clients.
All this comes in the context of serious concerns about whether it is financially sustainable amid eye-watering forecasts – which have been questioned by some experts and states – that its annual cost will reach $60 billion by the end of the decade.
The issue was thrust into the election spotlight when Catherine Yeoman, whose four-year-old son, Ethan, has autism, told the prime minister during the leaders’ debate that Ethan’s plan had been cut by 30 per cent. What, she wanted to know, would the Coalition do with the NDIS?
NDIS Minister Linda Reynolds told The Age the Morrison government continued to fully fund the scheme as an essential service that more than half-a-million Australians relied on.
“There are no cuts to the NDIS,” Reynolds said, pointing to a record investment of $157.8 billion over four years in the March budget.
But last year, Reynolds warned the NDIS faced serious sustainability issues, saying there was “no single lever to pull to place the scheme on a sustainable long-term growth trajectory”.
The latest NDIS quarterly report shows the average plan size dropped by 3.8 per cent in 2021, which many disability advocates saw as confirmation that the government was seeking to rein in costs by reducing individual plans.
“It is completely consistent across all states and territories, this experience where lots of people have had their plans cut,” says Mary Mallett, CEO of the Disability Advocacy Network Australia.
The National Disability Insurance Agency insists there is “no directive to cut individual plans”.
Reynolds says the slight decrease in average plan size reflects a changing mix of participants, with an increase in children – who generally have smaller packages – and fewer people receiving the more expensive Supported Independent Living funding.
The average plan size had been growing consistently until last year. It rose from $60,100 in 2018 to $71,200 in 2020 before dropping to $68,500 last year.
Professor Bruce Bonyhady, a former chair of the National Disability Insurance Agency, says there are legitimate reasons for some reductions to individuals’ packages, such as a participant’s condition improving.
“But when I see what is happening to some people’s plans, it could only be because of a short-term [cost-]cutting approach.”
Bonyhady points to a spike in complaints about NDIS plans and access to the scheme made to the Administrative Appeals Tribunal in the December quarter of last year.
“Even if you haven’t had your plan cut, there is this fear of most participants now about what might happen at the next plan review. It’s not healthy, it’s not what it was meant to be. A core promise of the NDIS was certainty.”
In 2017, the Productivity Commission estimated the NDIS would cost $22 billion in 2019-20, the first full year of operation, with about 475,000 people receiving individual support.
But the cost has grown to $29.2 billion this financial year, with 500,000 Australians now receiving support.
Last year, the government commissioned a report by independent actuarial firm Taylor Fry to examine what was driving up costs. The report pointed to more participants entering the scheme than had been projected. At the same time, fewer children than anticipated had left the scheme after receiving early intervention therapies.
Disability advocate El Gibbs says the lack of other disability supports means that pressure to access the NDIS will persist.
The 2017 Productivity Commission report recommended increased funding for the 4 million Australians with disabilities who do not receive individual NDIS funding, on what is known as Tier Two. “There is an urgent need to develop the original Tier Two of the NDIS,” Gibbs says.
Few know the NDIS better than veteran disability advocate and quadriplegic wheelchair user Dougie Herd.
He fought passionately for the introduction of the NDIS, he is a participant, a former member of the senior executive leadership team of the National Disability Insurance Agency and currently the chief executive of a Canberra-based disability support provider.
One of his frustrations around the debate is the focus on costs rather than benefits, including the significant economic multiplier effect.
Herd points to modelling by the Per Capita think tank which shows the NDIS delivers $2.25 to the Australian economy for every dollar spent.
Dougie Herd fought for the introduction of the NDIS.Credit:Steven Siewert
“They keep going on about how it’s a cost to the national purse, when it creates jobs and better lives for people with disability and their families,” he says in his distinctive Glaswegian burr.
“I don’t want to sound like some kind of naive Pollyanna, but it’s a real example of a piece of public policy that works for everybody.”
Minister Reynolds says state and federal disability ministers will continue to monitor the sustainability pressures facing the NDIS this year as well as undertaking work to understand the economic benefits.
“All governments have made a commitment to tackling these issues, while ensuring that every eligible Australian who relies upon the NDIS continues to receive the support they need,” she adds.
The states share the funding of the NDIS, with the Commonwealth contributing 62 per cent this financial year.
“Any reform to the NDIS can only be done by working together as a federation,” Reynolds says.
Meanwhile, Labor has promised a sweeping review of the NDIS if elected, vowing to save money by cutting the “excessive” use of consultants and lawyers and cracking down on fraud. The National Disability Insurance Agency has spent $32 million on private law firms in the past eight months, up from $22 million in 2020-2021.
“Under this bunch of incompetents, there is certainly money being wasted,” says Labor’s NDIS spokesman Bill Shorten.
He says Labor would also make savings by having a more streamlined decision-making process with an “expert review” to ensure NDIS plans were not being arbitrarily cut. This would seek to reduce the number of people forced to take legal action to contest their plans.
“And, of course, I don’t know what money is going out in fraud, but it’s happening,” he says. “I think there are cowboys in the industry. So there’s overcharging and under-servicing.”
Last year, a taskforce established to crack down on fraud in the NDIS was extended indefinitely after it uncovered millions of dollars of alleged rorts in three years.
Shorten also points out that education systems continue to be responsible for providing supports for children with disabilities, such as resources and training for teachers, aids and equipment to make education accessible.
“I think that there has to be a really mature discussion with the states that the NDIS can’t be a replacement to the education system.”
Shorten says there are other long-term trends which need to be addressed. These include a lack of appropriate housing for people with disabilities leading to mounting queues.
A new report by the Public Interest Advocacy Centre and Housing Hub says people with disabilities are waiting months for a decision from the National Disability Insurance Agency on their housing. Only a quarter received the funding they had requested in the initial decision.
A National Disability Insurance Agency spokesperson says the circumstances of many participants are complex, particularly those involving housing requests, and the necessary information can take time to gather: “It’s incorrect to say making a decision on housing supports from the time the agency is in receipt of all required information takes months.”
Elisabeth Appelgren-McIntyre says her adult son, Stefan, who has severe autism, was unsuited to living in a group home.
“When the pandemic started, he got so aggressive he would attack other people and himself and I had to keep taking him home every time we had a lockdown.”
Elisabeth Appelgren-McIntyre and her son, Stefan.Credit:Darrian Traynor
Appelgren-McIntyre made an urgent application in December for more funding so Stefan could live on his own, which was knocked back after several months.
She has requested an internal review and must now provide fresh reports from Stefan’s doctors and behaviour support planner, even though her son’s circumstances have not changed.
“It is an absolute nightmare and you never deal with the same person,” she says.
Stefan is now living with Appelgren-McIntyre, but she is a 71-year-old widow and worries about the future: “If something happened to me, what is going to happen to him?”
A National Disability Insurance Agency spokesperson says Stefan continues to get significant amounts of funding.
Helen Dickinson, professor of public service research at UNSW, says there is a loss of trust in the National Disability Insurance Agency following last year’s controversial trial of independent assessments.
The assessments – where government-appointed staff would assess participants rather than rely on reports from their doctors – were fiercely opposed by the disability community, who saw them as a cost-cutting measure.
They were ultimately scrapped but Dickinson says the relationship between the agency and people with disabilities has become “pretty adversarial”.
She believes sustainability concerns could be addressed in part by reducing the number of appeals and cutting red tape.
Many people will spend an extraordinary amount from their plans getting medical reports to give them access to services, she says, even when they have been participants for some time and their circumstances haven’t changed. “That’s a really costly process.”
There were always going to be teething problems with a scheme as ground-breaking as the NDIS, Dickinson says, but she has no doubts it is salvageable.
“For many on the scheme, it has been completely life-changing,” she says. “I would just like to see it that way for all who access it.”
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