Trapped in a broken system

The NDIS is making life unbearable for patients in limbo.

ANU student Vanamali Hermans. Picture: Gary Ramage

Every day Mali Hermans, 19, phones her mother in hospital — where she has been stuck in ­“purgatory” for more than 15-months — and the conversation almost ­always ends with a plea to “get me out of here.”

The case of 51-year-old Julie Hermans, who contracted the rare neurological condition Atypical Guillain-Barre Syndrome in October 2016, has swiftly become a ­potent and very human example of what happens at the murky ­intersection of the $22 billion ­National Disability Insurance Scheme and other systems.

Hermans is trapped in a northern NSW hospital because the NDIS at first totally ignored a ­request for supported disability ­accommodation — she is a quadriplegic on account of the condition — and now refuses to review the decision.

Just five days before Christmas the Murwillumbah District Hospital started charging Hermans $60 each day she stayed in subacute care but she is in unable to be discharged to a nursing home because her care needs are too high.

In any case, the NDIS was once sold as a panacea for younger people — those aged under 65 — who had been left in the limbo of the aged care system.

The reality of the enterprise is far more complicated, and bureaucratic squabbling is stifling the promise of better days ahead.

“I want to say it has been stressful, but it has been so much worse than that, it’s heartbreaking,” Mali Hermans says from Canberra where she is a third-year sociology student at the Australian National University.

“Mum has this really strong sense of abandonment, by the ­bureaucracy, by the people who are meant to help her. She has a strong fear that she will wither away and die in that hospital.”

Minutes of a care team meeting from December 12 show the extent of crisis planning for Julie Hermans at the Murwillumbah ­hospital, including that she has ­expressed she “no longer wishes to live”.

Hers is not an isolated case and advocates are aware of “many others” who have been left in hospitals for weeks, months and up to a year while waiting for the byzantine systems that determine the quality of their lives to take responsibility.

Cruelly, Julie has been denied a chance to live in the community of her own accord with money meant to be funded by the NDIS.

The measure, called Supported Disability Accommodation, is modelled to pay out about $700 million a year to participants at full rollout so that they may live in their own homes.

The National Disability Insurance Agency, in Julie’s case, has claimed it cannot review her SDA or supported independent living funding — of which she has none, anyhow — until she can find a ­vacancy in a group home.

Group homes will not offer a place unless funding is locked in. And so the circle completes itself.

Housing policy, long considered one of the most crucial and complex aspects of the NDIS, still lacks a design. In the last financial year the disability agency paid $1.3m in consultancy money to Boston Consulting Group for “specialist advice and guidance” on the issue of supported accommodation.

In the same period, however, it paid out scarcely more than ­double that, $2.7m, in actual SDA payments to people with disabilities for their housing needs.

The apparent lust for consultant contracts within the agency was laid bare in this newspaper with revelations the agency has spent $180m on consultants and contractors in the past year and plans to spend another $155m.

The claim from agency spinners is that it is a growing scheme — true — that relies on outside ­expertise alongside its regular staff, though the ratios are bordering on the farcical.

Almost one-third of the ­agency’s internal staff are contractors, a figure that at one stage ­included a single person who was paid $830,000 in a single year as a ­“special adviser” to the chief ­operating officer, a position which does not exist at the NDIA.

A behavioural economics ­consultant was paid $88,000 in four months to help staff with their communication skills, notwithstanding the agency’s well-stocked media unit and high-level public servants.

Meanwhile, every one of the four deputy chief executive positions and a handful of general manager roles remain empty since a staffing exodus that began in late 2016. The deputy CEO roles are filled by acting staff, some of them there since early last year.

“I get so angry seeing our money going to these consultants,” writer and disability activist El Gibbs says.

“I watch these people and they look upon the NDIS as some ­stupid f..king cash cow for them to write reports and not as a scheme that was meant to change our lives for the better.

“I want their snouts out of the trough.”

That was always the warning of seasoned students of government programs, of course.

The equation is simple: government pool of money for essential service, blow-ins seek to profit.

“I am increasingly aware of a large and growing concern among other people with disabilities about just how much of a disappointment the NDIS is becoming, how disappointed we are with where it is heading,” Gibbs says.

“We are moving further and further away from the promise of having disabled people at the ­centre.

“Suddenly there isn’t enough money, suddenly people aren’t ­eligible, suddenly the rules are being enforced in arbitrary ways.”

The scheme itself is behind schedule and the most recent ­Productivity Commission review into its cost conceded, alongside former social services minister Christian Porter, that there is no way it will be delivered on time.

To get to the 475,000 participants scheduled by the end of the 2019-20 year the agency must ­“approve hundreds of plans a day and review hundreds more” but it has missed these benchmarks so far and is already some 20,000 participants behind.

The hardest work was always crammed into the back-end of the rollout and now, in the last 2½ years before the project is meant to be completed, the expectations, ­effort and efficiency required to get it done are beyond the capability of the current agency.

Much of this stress was built in by the former Labor Gillard government, desperate to have state ­governments sign on to sweetheart deals, which locked them into support of the scheme without any of the attendant detail.

That detail, missing then in 2012 and 2013, is still missing now and it is breaking the hearts and minds of vulnerable people to whom the NDIS was promised.

“Mum is in purgatory,” Mali Hermans says.

“I feel like the NDIS keeps believing she will stay in hospital and if not that she can go into an aged care home but she doesn’t have that option, she is pretty much homeless.

“Originally, in the NDIS planning meeting, staff said there are still massive grey areas where they were not sure if this or that should be covered by the state system.”

Guillain-Barre Syndrome, for the record, is considered to be a medical condition but it affects the ability of a person to move their muscles. Those early state and ­federal agreements on the NDIS never quite agreed what shades of “medical” and “disability” might be captured by one system or ­another.

People like Julie Hermans are now paying the price for that woefully imprecise entree to the largest social reform since Medicare.

Under the old, imperfect state-based disability systems Hermans would have been able to apply to NSW disability accommodation for support but the state has withdrawn itself from the game under the cover of the NDIS.

After about four months of wrangling for a support plan from the agency (the scheme only began in northern NSW in July last year) Julie Hermans received her first plan in late October.

It comes in at a total of about $50,000 but due to public liability insurance issues at the Murwillumbah hospital she can use almost none of it. “They won’t let private providers come into the hospital so Mum is limited to one visit of 20 minutes a week because the ­hospital physio has to do the entire ward,” Mali says.

“She needs physio because her condition is a real unknown, she may be able to recover some movement in her arms and legs which would give her some function back.

“The physio would improve her odds tenfold but she hasn’t had even close to what she needs in more than a year.”

The NDIS is a notoriously ­impenetrable arm of government but one plausible explanation for its apparently clumsy decision-­making to date is that time is fast running out for it to keep private its internal projections of how much the scheme will eventually cost.

The $22bn figure used for the cost of the total scheme is for 2020 and hasn’t been updated in almost six years. In last year’s Productivity Commission report into scheme costs it was noted there would be more than enough data by the middle of this year to update that assessment.

From July, the pressure will be on the scheme actuary Sarah Johnson to release a new model of scheme costs based on the intricate experiences of, by then, some 200,000 participants.

The agency has begun acknowledging there are “cost pressures” but has never attached a dollar figure to these identified issues with the rollout, such as the number of children aged under 18 who have made it into the scheme.

There are more people, in ­general, making it into the NDIS and fewer people leaving it than projected and, as it happens, there is wild variability across support packages for people with similar disability types.

The Productivity Commission has demanded an end to expensive “in-kind” funding arrangements, which are another hangover from the Gillard period when state governments were allowed to continue providing some services but essentially charge the NDIS a rate of their own choosing for doing so.

It has warned the same state governments to put a stop to withdrawing from existing services which cover people who do not and cannot enter the NDIS, though this is an empty threat because the governance arrangements of the scheme are such that the states must agree to any changes which affect them and, as one person involved in the urgent bilateral negotiations at the time put it, there is “not a premier alive who is going to unwind one of the best deals their government ever had.”

There is an astonishing amount of complexity in the design of the scheme and the ad hoc way it has been built in real time. The NDIS is two things, in fact. A single program for people with disabilities and something akin to a charismatic cult leader for whom a litany of other state-based disability ­programs have laid down their lives; an oasis in a desert.

At the heart of such policy ­friction is Julie Hermans, trapped in a hospital bed and begging her daughter for freedom.