NDIS: What happens when the powerful deal with disability

AFR Magazine
by Fiona Carruthers
23 July, 2018

Surrounded by the accoutrements of corporate success – plush sofas, expensive art, an office full of busy staff – venture capitalist, banker, philanthropist and father of three girls Mark Carnegie casts his mind back to when his youngest daughter Matilda, now 20, was diagnosed with profound deafness and limb abnormalities at the age of 11 months.

"Life is never the same again," Carnegie recalls, gazing out his Sydney office window at a poignantly pretty dusk sky. "It changes everything. Up until that point … how to describe it," he tilts his head towards the ceiling and runs his hands over his face in remembered frustration. "When you're someone who has been relatively successful in life, you just go along thinking you can control your environment. Then you find out, actually … no."

He describes the treadmill of years that his former wife, Tanya, spent in waiting rooms with baby Matilda; the endless appointments at hospitals and medical centres to consult specialist audiologists, physiotherapists, orthopaedic surgeons, neurologists, cardiologists, speech therapists, rehabilitation services and more. Life became an ongoing exercise in troubleshooting with glimpses of normality squeezed in between.

"Tilda's hospital file quickly got to two inches thick, then three inches thick …" his thumb and forefinger indicate the expanding width. The couple sought 15 specialists' opinions for just one of Matilda's issues; the gigantism that caused her right foot to grow to seven times the size of the left one.

One-stop shop

Exasperated with the often limited treatment options on offer, in 2001 the Carnegies established the multimillion-dollar Matilda Rose Centre in Sydney's Waverley – a one-stop shop with rehab, therapist and education experts treating children's impairments early. It was the sort of centre they had wanted for their daughter. "I threw money and rage at the system to get the outcome I wanted – to get what we knew we needed," sighs Carnegie. "But what if you can't do that?"

It's one of many troubling questions that drove the formation of the National Disability Insurance Scheme ­– now halfway through its three-year rollout, and the country's biggest social reform since Medicare in 1975.

The scheme ends the old-style welfare model whereby governments shelled out billions of dollars to thousands of disparate departments, agencies and charities. In its place, over time, will emerge a teeming marketplace of disability service providers. The funding now flows directly to individuals so they can decide which services and treatments best fit their needs. "Many people with a disability have never even been asked if they'd prefer jam or honey on their toast," says John Walsh, a quadriplegic and former PwC partner. "Things are that basic."

A social insurance scheme, as distinct from welfare, NDIS has estimated it will need $22 billion a year to ensure everyone eligible ­– Australian citizens with a severe lifelong disability ­– will be cared for. That money is already locked in, quarantined from the typical annual budget bunfights. It is a near-tripling of the funding for disability services from before the NDIS, partly paid for by a rise in the Medicare levy from 1.5 to 2 per cent that was introduced in 2014. In dollar terms, the NDIS is bigger than aged care and the Pharmaceutical Benefits Scheme, and is almost as big as the $25 billion spent on Medicare each year.

Phasing in

As of April this year, 162,000 people had been phased onto the scheme – the overwhelming majority of them since July 2016. It's still hoped the bulk of the estimated 460,000 eventual participants can be phased onto the NDIS by 2020.

But the urgency behind the scheme's rapid rollout has caused even its original architects to pause for breath. "It's clear now that the original 2020 timetable probably won't be met," says Bruce Bonyhady, hailed as the father of NDIS and now head of the new Melbourne Disability Institute.

As the scheme cranks from the Productivity Commission's report to life, refinements are needed to avoid it buckling under its massive weight. Controversy has erupted over who's eligible and who's not, especially children on the autism spectrum. Bonyhady is particularly worried about ensuring there's adequate support for people deemed ineligible. "Otherwise, the pressure to allow more people in intensifies and undermines the scheme's sustainability," he says. "You don't want to create perverse incentives by having a cliff at the edge of it." The scheme has been widely attacked for its hasty implementation. Critics see the NDIS as another big idea from Labor, in this case rushed into being by Julia Gillard in the final days of her prime ministership.

But Bonyhady is urging the nation to hold the line. The creation of a multibillion-dollar marketplace with almost half a million newly minted customers is a radical move. Yet unlike other Great Leap Forwards – pink batts, the National Broadband Network – this was an idea that began outside politics and the bureaucracy.

Implementation and administration

"Markets drive the most efficient and innovative solutions," says Bonyhady, who was managing director of ANZ's insurance and management funds business, plus held similar roles outside Australia with BT Funds Management and National Mutual. He was on the board of the Disability Investment Group (DIG), which broadly designed the scheme and whose ideas were refined by the Productivity Commission. The scheme was then implemented and is administered by the National Disability Insurance Agency (NDIA). Bonyhady was the chair of the NDIA until his term expired in 2017.

He also knows exactly what's at stake, having brought up two sons with multiple disabilities. And that combination of personal experience of disability plus business acumen is mirrored by others who helped design and oversee the NDIS. Also on the board of the DIG and the original NDIA was Allan Fels, former ACCC head and economist whose daughter has schizophrenia, and Walsh, an actuary with PwC who has been in a wheelchair since 1971 as a result of a rugby accident. Bill Moss, the former head of property at Macquarie Bank who has facioscapulohumeral muscular dystrophy was also on the DIG.

Joining these architects of the NDIS are others who may lack the direct experience of disability, but who boast blue-ribbon corporate resumes. The DIG was chaired by Ian Silk, the boss of AustralianSuper. When Bonyhady's term as chair of the NDIA expired, the Turnbull government appointed Helen Nugent, whose background includes McKinsey & Company, Macquarie Group and Westpac. In August last year, former Perth-based BankWest managing director Robert De Luca began his three-year term as NDIA's chief executive.

"In all my years – three decades-plus, of working in the health sector, I'd say it's unusual for a policy of this size and scope to come from outside government circles," says Professor Ian Hickie, a practising psychiatrist and co-director of the Brain and Mind Centre at the University of Sydney, many of whose patients are now on the NDIS. "This has been driven by people with very personal knowledge of what it's like to live with a disability – and many of them were business leaders, accountants, super funds managers, finance people and economists." It's a seismic shift from a heavy-handed Stalinist-style structure, to one that is consumer-driven, he says.

Wealth meets disability

It's also in the spirit of the many innovative solutions that have resulted when wealth and disability collide. From the late 1960s Rupert Murdoch's sister Janet Calvert-Jones funded treatments and education for deaf children after her son was born deaf due to rubella. In 1995 Bega Cheese boss Barry Irvin, who has a son with autism, helped establish Giant Steps to bring more autism experts to Australia. In 2006 Moss started the wheelchair-friendly Lime Taxi business to meet that gap in the market.

Carnegie says the Matilda Rose Centre is also in this tradition. He is a passionate supporter of the principles of the NDIS. "Bruce was missile-locked on how he did it and he was a magician to get bipartisan buy-in, he really was," he says. "Is NDIS having teething problems? Yes. Is it perfect? No. Is it the right thing to do? Absolutely. If we can make this work, NDIS is the closest thing to a miracle that the sector is going to get."

Having two sons with cerebral palsy, now 27 and 23, Bonyhady has lived and breathed the disability sector for decades. "Like virtually every parent whose child is born with disabilities, I knew nothing at first," he says. "You enter this new world on a very steep learning curve, and then go through the three stages: grief and anger, followed by acceptance. And, if you're lucky, you finally feel gratitude, which I do very much now on a daily basis. My sons have taught me so much, including to live in the moment. But I admit that it took me a long time to get there."

Like Carnegie, he spent years fighting the system for what his sons needed. But it was a brief encounter with a stranger that prompted him to want to rewrite the rules. About 2005 – during the decade that Bonyhady was chair of Yooralla, one of the nation's oldest and biggest providers of disability services – he got talking to a single mother and her young preschool-aged son who had a range of disabilities.

Trigger for change

"She asked me: 'Why can't my son get the proper early intervention services he needs?' And I went into a long-winded explanation about how we were doing our best with limited funding, but I could see she was completely desperate. I went away appalled by my answer. Here I was, with all my connections and experience, simply defending the status quo. That was the trigger."

About this time, most states and territories (the main providers of disability services) were experiencing crippling cost blowouts and began flagging that a new way was needed. People with a disability were beginning to outlive their parents, often their only full-time carers. "There was enormous upward pressure on state governments," Bonyhady says. "Demand on disability services had been rising by 7 to 8 per cent per annum in real terms for about 20 years."

More families stretched to breaking point were resorting to the "crisis response" of putting their loved one into state care. Today, the estimated average cost of securing an emergency place in a 24/7 high-care nursing home is about $250,000 each year. In a 2009 OECD study, of 27 countries examined, Australia had the highest proportion of people with a disability living on or below the poverty line. The nation also scored in the bottom third percentile for employment opportunities.

Casting around for a new way forward, Bonyhady credits Brian Howe, a long-time politician and a former Labor deputy prime minister, with recommending an insurance-based model – flicking the switch from short-term welfare towards measuring long-term outcomes.

Mini NDIS

In 2008, Bonyhady floated the idea of a government-funded insurance scheme at the Australia 2020 Summit. The idea was formalised into the DIG. Walsh, who specialised in insurance, quickly became Bonyhady's right-hand man: in the 1980s, he had created Australia's first longitudinal data registry to shed light on forecasting anticipated costs of caring for people with spinal injuries. "When I look back now, it was like a mini NDIS," says Walsh.

"The scheme would never have got off the ground without John," Bonyhady says. "His skills set and life experiences are unique – a leading actuary with more than four decades' experience, who has spent almost his entire adult life in a chair. He knows the system inside out."

As a social insurance scheme, the NDIS is underpinned by data which helps predict how much assistance a person will need over the course of their lifetime. A golden rule of insurance is to invest early once a participant has claimed in order to decrease long-term costs. Before the NDIS existed, a person with acquired brain injuries might have been primarily cared for by her parents, and then moved into a nursing home when her parents got too old to manage. Under the NDIS she would qualify for more money upfront to modify her parents' house and invest in intensive physio to maximise her ability to remain more independent.

One of the most ground-breaking – and challenging – aspects of NDIS has been switching the funding model from money flowing to providers, be they government, private or charity agencies, to money flowing direct to the person with a disability. The annual allocation to each recipient has so far averaged $40,000, says Bonyhady, and the median has been $20,000. "It's about empowering that person to select and choose their services like any other consumer," he adds. The big picture hope is to integrate people with disabilities more fully into mainstream society, and for NDIS to open up greater job opportunities, both for people with a disability, and able-bodied people wanting to work in the sector. Of the 400,000 jobs created last year – a record – about 50,000 were in healthcare and carer roles linked to the NDIS, according to economists at Goldman Sachs. They estimate there are a further 100,000 jobs to come.

Investing in the disabled

Across the nation, businesses and community services are becoming NDIS-eligible, from cafes and yoga studios to swimming pools. "It's a fundamental collective psychological shift from society viewing people with a disability as just needing passive welfare to investing in them and competing to attract their dollar spend," says Walsh.

The rollout has encountered manifold problems. Some of those who have not qualified say their funding has been reduced or services affected as a result of the introduction of the NDIS. Those who are eligible also complain; routines that took years to establish have been cancelled as the new model changes the way services are provided.

One of many families caught in the transition are the Fels. In the 1990s, Allan Fels' daughter Isabella, now aged 47, was diagnosed with severe schizophrenia, which was a contributing factor to him stepping down as head of the ACCC in 2003 after almost eight years in the role. "When you're trying to get help for your child, you become aware very quickly how hard the system is to navigate," says Fels.

"I've witnessed first-hand over the years how mental illness strikes virtually all families at some point, from the very wealthiest to the poorest of the poor," he says. "But powerful people generally don't like discussing it publicly. They're much more comfortable talking about a child or grandchild with a physical or intellectual disability than mental health."

Recipe for success

The Fels family ended up so frustrated with the limited long-term housing options for Isabella that they joined forces with a group of like-minded parents to create their own assisted-living facility for their adult children with severe mental illnesses. In 2011 the Haven Foundation opened a long-term housing facility comprising 14 apartments, backed by some of the nation's wealthiest families, including the Pratt Foundation and the Helen Macpherson Smith Trust. Haven is constructing more facilities at Frankston and Geelong. Fels is determined to keep each one at a maximum of 20 apartments; small is part of the recipe for success.

"When you jump outside what the system tells you that you can or can't do, you strike some truly amazing solutions," he says.

The Carnegies also used their personal experience of gaps in the system to help those coming after them. Since 2011, the Matilda Rose Centre has been run by the Royal Institute for Deaf and Blind Children (RIDBC), a service provider accredited by the NDIS. "I'm a venture capitalist," says Carnegie. "We were thrilled to create it, but they will run it better than we can."

The centre came about because after Matilda was diagnosed, her parents were struck by the importance of early intervention.

Catastrophic scenario

"It was Tanya who noticed how stressed Matilda was getting by travelling in the car, going off to yet another appointment, waiting, being examined, coming home, and then doing it all again in the afternoon," says Carnegie. "That scenario is a catastrophe. What you need is for the specialists to come to you to help normalise the experience." When that specific care model couldn't be found, the Carnegies created it. "At first, we were really doing it for Matilda, to be honest. Then we thought, let's build a proper centre so other kids benefit too."

Matilda, who wears a cochlear implant, is now in the second year of her arts degree at Melbourne University and is on an elite para-equestrian squad with a new horse, a mare called Devil's Chocolate. "There has been outrageously little done for people with disabilities," she says. Although she won't apply for the NDIS – "I am too privileged" – she hopes others will benefit from both the scheme and the centre established in her name. "Everything my family achieved for me made the world of difference," she says. "Having tailored holistic care in a nice environment, not a hospital, gave me the best head start."

Both the Matilda Rose Centre and the Haven Foundation can be accessed by people eligible for the NDIS. The question is now: can this $22 billion scheme take these innovative solutions funded by affluent individuals and deliver them at scale?

Sitting in her office overlooking Sydney's Martin Place, Helen Nugent recounts a tale from the 35th reunion last year of her Harvard Business School MBA class. One of her cohort, Mitch Tuchman, a software entrepreneur, told the class about his son Jack, who is 180 centimetres tall and in his 20s, but has the mind and movement of a one-year-old and is unable to speak. Tuchman and his wife thought they had managed to take their son's disability in their stride; he told the class about the early years of raising Jack, until a time when they were in a McDonald's as a school bus unloaded about 30 severely disabled teens.

Scary place

"The sight and proximity of this group rattled me to my core. I glimpsed into our future raising Jack, and I wept. I saw the taunting he would receive, the struggles he would have. At that moment, I realised I was entering a scary place. What did I know about raising a son who might never learn to speak or care for his most basic needs, who would need to be watched 24/7? …. That led me to another new worry: how would I make my wealth last a hundred years for the duration of Jack's life?"

The audience remained in silence minutes after Tuchman had concluded his talk and resumed his seat. "Sorry, I still get goosebumps," Nugent says, shivering and reaching for her blazer. "It's stories like that which bring you up with a real halt and you think 'hang on, I have the skills to help'." She leans back in her chair: "Can you imagine how good it felt to be able to say to Mitch afterwards – hey come visit me in Australia, come and see our new NDIS model. It's making a real difference to parents and the lives of the Jacks of the world."

Nugent acknowledges she has a big 18 months ahead as the rollout steams on. "It's daunting," she sighs. We touch politely on the topics to hand – the need to maintain bipartisan support, the complexities of pushing ahead while righting all the inevitable problems, creating a competitive marketplace of service providers, making it easier to do business with the NDIA through better IT systems.

"We are focused on delivering an improved participant experience," says Nugent. "Also on reaching out and engaging with disability organisations. They are the sector's lifeblood."

Thinking about Mitch and Jack Tuchman lends courage for the hard yards ahead. "Now we just need to bring it home on budget," she says. It's no easy task. But the line must be held for future generations. Too much is at stake.

Who can apply and how it works

Australian citizens under the age of 65 with a significant and permanent disability that substantially reduces their ability to participate in society.

A planner helps the participant create a tailored package around their daily routines, goals and what's important to them. They then assign funding for reasonable and necessary disability-related supports that are likely to assist the participant to live as independently as possible. These may include personal care, therapy services and essential equipment.

Progress towards achieving these goals is re-assessed at the participant's annual plan review.

Michael's story: before and after the NDIS

If you asked 15-year-old Michael* from Sydney's inner west what the NDIS means to him, he would probably say "strawberry milkshakes". Since being phased onto the scheme, part of his funded care plan includes weekly trips to a local café where he always orders a strawberry milkshake using software on his iPad to communicate. "Going to the shops on a regular basis without his parents has meant the world to him," says his mum, Rose*.

Michael was born with Down syndrome, Sturge-Weber syndrome, vision and hearing impairments and an intellectual disability. He attends a special school and requires assistance with all personal care, communication and mobility. He moved onto the NDIS last year and has a care package of $70,000, up to seven times higher than what he was receiving before. How has it changed his life?

Before

• Attended special school using Assisted School Transport.
• Various NSW state-funded packages, the bulk of which paid for 2.5 hours of weekly respite care and a few respite days during holiday periods.
• His parents paid the bulk of the cost for therapy including speech and physio, at about $140 an hour. Some financial relief came via Medicare and private health rebates.

After

• Same school and transport arrangements.
• More than 14 hours of support care each week. His plan also budgets for him to do intermittent overnight stays at a purpose-built care facility near home to build up his confidence. The family used to spent roughly $5700 a year on continence products including nappies for Michael – these are now covered by NDIS.
• Michael now has more hours of fully funded therapy. His parents can choose the providers.
• Money for assistive technology.

The verdict

"The initial assessment meeting felt quite traumatic," says Rose, when asked about the negatives. "It felt like what we received depended on how well we could advocate for our child. The administrative side is also a nightmare. Everyone is learning at once – both staff and participants. Choice can sometimes feel like a huge burden and responsibility."

Overall, however, the change has been positive. "Prior to NDIS, we did not have the funds to send Michael out into the community with a carer on a regular basis. Under his plan, they fund the carer, and we pay for his activities, meals – and all those strawberry milkshakes. It's helped our son enjoy life more. We feel less isolated as a family and that is invaluable."

*Names changed to protect privacy.