Defining moment for National Disability ­Insurance Scheme

Rob De Luca isn’t ready to speak with you yet.

The young, newly installed chief executive in charge of the $22 billion National Disability ­Insurance Scheme was adamant he didn’t want a public email when he took over the reins in August last year.

He uses a made-up first name, keeping the address off the books because he doesn’t want ­direct emails from “normal mums and dads, agency staff and participants”, according to one disgruntled staff member.

The former Bankwest managing director has poached four other senior executives who worked for him during his five years at the helm of the Perth-based bank and has appointed them to some of the most high-ranking positions at the National Disability Insurance Agency.

Change is afoot at the ­behemoth scheme, which is entering the final two years of its scheduled transition to full ­national coverage. There are more than 142,000 participants. If it were running on time — it isn’t — that number would need to soar to 475,000 in two years.

De Luca arrived at this critical moment with a mandate to keep a lid on costs and to deliver a rigorous scheme for the most profoundly disabled people in the country. His direct hires from banking life give a flavour of what he is after: they are risk and audit officers, strategy mavericks and people in charge of “enterprise change”.

There are four deputy chief executives but only one of them is an original from the earliest days of the NDIS. Her name is Vicki Rundle and, to be frank, she hasn’t had a good week.

On the morning of May 15, at precisely 9am, scores of autistic people and autism advocates rang the offices of the insurance agency to hound them about an update to the rules around access for people with the spectrum disorder.

 John Feder

Sean Tobin with Oliver and Tayla. Picture: John Feder

Until the phone switchboard lit up, nobody senior at the agency ­realised they had accidentally published for all to see the beginnings of a secret plan to remove people with level-two autism — considered to require “substantial” support — from automatic entry to the NDIS.

“It was like watching something out of Utopia,” one agency employee told an advocate, referring to the Australian television satire about life inside a nation-building government department.

Rundle is the deputy chief executive in charge of communications, people and “stakeholder engagement”.

On that morning last Tuesday she was told to fix it and deal with the problem herself; no delegating to anyone more junior.

“I told her, ‘bad move’ because autistics have a great attention to detail, if anyone was going to find that change it was going to be us,” Autism Self Advocacy Network chairwoman Katharine Annear told The Australian.

“She was extremely apologetic. I think they were genuinely shocked that they got all those phone calls. They blamed it on a new employee. I’m not sure if they think we are stupid, there was nothing in their explanation about the intent behind that document.”

That document was an updated list of conditions that guaranteed access to the scheme and part of the autism category had been removed. The Australian understands the agency has considered removing all autism spectrum disorders from the list, though that did not make it into the document that was “incorrectly” uploaded.

The Weekend Australian confirmed a broader strategy to overhaul the way autism is treated under the scheme, however, and the bureaucrats in charge issued a statement last weekend that clarified the work had been under way for “some time”.

The change to list-A conditions, as they are known, also included a new addition that further confirmed the agency had been planning a wholesale overhaul of the “automatic entry” requirements.

Motor neurone disease, a progressive but debilitating condition, was added to the accidental upload even as some types of autism were removed. Profound deafness was also included.

Currently, however, these conditions do not count on the list because the NDIA said it was uploaded in error and reverted to the initial list.

Participants have no idea when or if those changes will ever be made.

There is evidence that the NDIA — even before attempting a formal strategy to pare back the number of people with autism in the scheme — has been aggressively reducing funding in support plans. The Australian first reported the practice in 2016 but it continues with participants yesterday saying their autism packages specifically have been wound back by as much as 75 per cent.

One mother of an eight-year-old girl with level-two autism begins sobbing as she relays her experience in daily life caring for her daughter. Their support plan was recently slashed by one-third on review.

“I was told by my local area co-ordinator (outsourced pre-planners working on behalf of the NDIA) that I was lucky to get anything at all,” says the mother, who did not wish to be named.

“I could have reviewed the plan but I was told my daughter might not get any support at all.”

Her daughter is still in nappies and has several extremely challenging behaviours. “Just the other day we were going for a walk and a car drove past and she became agitated and tried to run on to the road so I had to hold her back,” the mother says.

“She began screaming because she couldn’t understand why she couldn’t run on to the road. We are not wealthy people and I am determined to live for as long as I can to look after my daughter, but the stress of dealing with the agency has shaved years off my life.”

She apologises profusely for crying, but it is clear her family is under severe pressure.

Sydney father Sean Tobin has two children with autism, 10-year-old Oliver and eight-year-old Tayla.

“The NDIS wasn’t meant to be capped. It’s an insurance scheme. We need to be investing in these kids now,” he says.

“Oliver is going to need 24/7 support for the rest of his life, and that’s OK, but Tayla has a moderate level of function and we want her to earn an income and pay tax. We want her to go to a mainstream school and move out of home.”

 Peter Ristevski

Sarah Henderson, Dan Tehan and Rob De Luca. Picture: Peter Ristevski

The debate about whether the NDIS has been “fully funded” has raged for years, with little progress. It asks the wrong question, however.

What the agency is beginning to understand, with its army of ­internal actuaries crunching the numbers, is that the promise of the scheme being all things to all comers cannot be realised for $22bn.

There are two options under this scenario: increase the total funding or shave costs now to prevent even more future heartbreak.

A conspiracy of silence about these issues from Labor, which campaigned for and introduced the NDIS, and the Coalition, which has been left to deliver it, has left participants confused and angry. The Coalition only a year ago attempted to raise $8bn across four years via a half-percentage point rise in the Medicare levy to pay for the NDIS.

This year, after Labor opposed the move on the basis it would be “unfair” to low-income earners, the levy was dropped.

Nevertheless, the Treasurer claimed to have funded the scheme from general revenue. As the federal government pursues a return to surplus the NDIS is scheduled to cost more than $30bn a year in just over a decade.

The future does not look so bright, though the present is less than stellar.

A recent four-year study from Flinders University found as many as one in five people have been left worse off under the NDIS.

That’s to say nothing of those who used to receive disability support under state and federal programs that have been or are due to be absorbed by the scheme. The bilateral agreements, signed in a rush by Julia Gillard, gave governments a once-in-a-lifetime chance to divest themselves of any and all responsibility for disability service provision.

NSW, which signed on first, has now privatised its entire disability portfolio. The state government even has told this newspaper it has no responsibility for quality and safeguards, which is not true; the NDIS doesn’t take on that oversight until July.

One senior manager involved directly in the NDIS rollout has told The Australian the agency has taken an “absolutely ham-fisted” approach to a serious problem. “The handling is woeful but what people don’t often talk about is scheme sustainability,” he says.

“This thing has got to be there for the people who really need it. Where this really begins to hurt is the failure of the state systems which, by the NDIS agreements themselves, have been allowed to terminate their services.”


Labor’s spokeswoman on social services, Jenny Macklin, was also the minister in charge when the NDIS was introduced. She concedes none of the points about the shackles that have been placed on the program by its early design.

“The Turnbull government’s mismanagement of the rollout of the NDIS is causing anxiety among people with autism and their families,” she says.

“The National Disability Insurance Agency’s recent blunder in publishing incorrect operational guidelines was very distressing. Families of children with autism deserve answers and Labor will be pursuing this issue in Senate estimates in the coming weeks.”

The autism changes do not just affect children, however, and the agency has been cutting costs across the board. It has listed a ­litany of “cost pressures” in every quarterly update for years now without being able to bring them under control.

“The NDIS is fully funded, it ­always has been. The money for it is in the budget and the Turnbull government also acknowledges that,” Macklin says.

She declines to answer questions about the structural pressures on the scheme into the future, as does Social Services Minister Dan Tehan who notes the scheme “has been within budget each financial year (since launch in 2013) and remains on track in 2017-18”.

“A service delivery project of this size has never been undertaken before anywhere in the world and all levels of government, the community and private sector need to work co-operatively ­together to realise the full potential of the scheme,” he told The Australian.

ASAN’s Annear is convinced the modelling for the NDIS, especially on autism numbers, was compromised from the start.

“No, they absolutely didn’t get that right,” she says. “When I first started volunteering at Autism SA (South Australia’s service delivery body) there were 900 clients. Now there are more than 9000. How did that happen? That growth happened over a very short period of time.”

The number of children in NDIS trials in that state blew out by 50 per cent, again due to a state government getting a sweetheart deal to sign up for the project ahead of the 2013 federal election.

“Disability SA had no money so they used their own numbers rather than the numbers from Autism SA,” Annear says. “They didn’t want to pay as much for their contribution to the NDIS.”

Cost overruns are wholly the responsibility of the commonwealth. Again, this is enshrined in those agreements. This month the NDIA announced the scheme in South Australia will be delayed by more than half a year.

The scheme, once sold on ­effortless platitudes, is now ­traversing a field of broken dreams and is entering a new phase, ­anchored firmly in the reality of policy delivery.