On a Brisbane morning in April of this year, Lillian Andren rose long before dawn. Almost completely paralysed, getting to the public hearing of the Productivity Commission’s inquiry into disability care and support was no easy feat. Close to vomiting with pain, she made the arduous trek across town. Nothing, however, would have deterred Lillian from telling her story.
Seven years ago, while bathing in a private backyard pool, she was terribly injured when a 90 kilogram man accidentally fell on her. The muscles were stripped from her spine, leaving nerve signals but no muscles to translate them. At age 31, Lillian was told she would have to spend the rest of her days in a nursing home. Through grit, hard work at rehabilitation and sheer determination she finally made it back home.
In her decision to live independently, Lillian encountered new difficulties. The accident did not occur under circumstances that enabled her to sue for compensation, as she may have done had it occurred at a public baths. She could not apply to WorkCover because it did not happen at work. Her spine had not been severed so she did not qualify for any fully funded and comprehensive care package for spinal injuries. Her case simply fell through the cracks.
Lillian’s injuries make her incontinent. Initially she was offered help by government-funded carers for two showers per week. Now she gets three. As she explained at the hearing: “the delightful irony is, to receive that third shower per week I must have daily incontinence issues. So the system allows me to sit four days a week in my own urine to provide me three showers a week …”
In the sweltering Brisbane heat, she suffers profuse sweating, causing rashes, cysts and boils. Although she is mainly confined to bed, her care package only allows care workers to visit for 60 minutes per fortnight to change her sheets. Lillian told the commission: “I have begged for them to come at least once a week, to change my sheets once a week, but no.” She has no idea at what time of day the care workers might arrive to shower her. They come when it suits their timetable and refuse to be pinned down, which can be very stressful if, for example, Lillian needs to get to a doctor’s appointment. The agency changes the staff rosters all the time, so Lillian has no idea what stranger will come to help her with the most intimate bodily functions. They are paid to do only superficial ‘maintenance’ cleans, rather than a thorough job.
“My house is filthy … I now rarely allow visitors because I’m so ashamed of how my home looks … As someone with a spinal injury who rarely gets out except to doctor’s visits, I’m incredibly isolated by this.” Lillian says that for years bureaucrats have told her, “I really feel bad for you, but there’s nothing I can do.”
For Patricia Scott, the cool-headed economist heading the inquiry, this intelligent and articulate woman’s frank testimony was among the most harrowing of all the evidence she has heard in the course of her investigations.
Benjamin Disraeli wrote how nineteenth-century Britain was divided into “two nations” of rich and poor: “as ignorant of each other’s habits, thoughts, and feelings, as if they were dwellers in different zones, or inhabitants of different planets”. In twenty-first century Australia, to be someone with a disability, or their carer, is to pass from one nation into another. Bill Shorten, the former parliamentary secretary for disability, called those with disabilities “eternal exiles” in our nation, saying they live “under the radar”.
Around 4.5 million Australians – or about one-fifth of the population – have a disability of some kind. Of these, 760,000 people under 65 years of age have a severe or profound disability, meaning they “always or sometimes need help with a core activity or task”. Half-a-million Australians are primary carers of a person with a disability – the equivalent of the population of Tasmania. A further 2.4 million, or 10% of the nation, are non-primary carers. Yet disability does not even rate an outer ministry.
Our country has never been wealthier, yet disability services are rationed tighter than petrol in Britain during the Blitz. Funding is a lottery. Very little goes to the person with a disability or their carer, while most is given to service providers who eke out the depleted resources. If these institutions are not funded to provide you with what you need, tough luck; if they are, join the queue. People battle for years through what one submission to the inquiry aptly called the “confusopoly” – the labyrinth of bureaucratic red tape you must navigate to gain even the most basic help. People are pitted against one another in a competitive system, a “misery olympics”.
Disability support is administered by the states, which simply do not have the tax base to pay for it. This results in a marked disparity in coverage. In Western Australia, about 85% of applications for high-level care support are rejected. A care package – which makes all the difference to surviving – may depend on something as arbitrary as what side of the street you live on. If you have an accident, make sure you reside on the NSW side of Boundary Road in Tweed Heads, for example. In NSW you can get full support for a disabling motor vehicle injury through that state’s no-fault Lifetime Care and Support Scheme; Queensland doesn’t have such a system.
The economics of disability are bleak. Nearly one-third of households involving a person with a disability live close to or below the poverty line, compared to one-tenth of Australians overall. As Bill Shorten pointed out in a speech made after the release of the 2009 report Shut Out: The Experience of People with Disabilities and their Families in Australia, a person with a disability is more likely to be unemployed and on income support, and to live in public housing or be renting. They are less likely to complete secondary education. Worrying numbers of people with an intellectual disability end up in jail. Children with additional needs require early intervention but don’t often get it. As their parents know, for each year such crucial help is missing, behavioural problems and educational deficits multiply.
Among carers depression is much more common than in the general community – around 50% probability rather than 6%. People with disabilities are still denied easy access to things most Australians take for granted: cinemas, playgrounds, swimming pools and public transport. You might think that, in a modern welfare state, basic essentials such as wheelchairs are fully funded and made immediately available by Medicare. But no, we do it the old-fashioned way. Charities still rattle tin cans on street corners. Kind passers-by drop in silver coins. Eventually there may be enough funds to buy another quadriplegic a wheelchair.
The government’s dour advisory body, the Productivity Commission, is not known for hyperbole. Yet in the Draft Report into Disability Care and Support, released in February, the commission condemned the system as “underfunded, unfair, fragmented and inefficient”. Overall, the report estimates, our current funding for disability is about half of what is required – it needs to be doubled. No Australian currently has the financial protection each of us hopes we will never need.
The system of disability care is fundamentally broken. John Della Bosca, the former NSW minister for disability services and current campaign director for the National Disability and Carer Alliance, is blunt: “It needs a wrecking ball, and starting over.”
It needs a big idea.
In the National Disability Insurance Scheme (NDIS), a big idea is just what we have. Every bit as ambitious and far-reaching a societal shift as Medicare and compulsory superannuation, it will cover some 360,000 people with a profound or severe disability. (A smaller, complementary National Injury Insurance Scheme will cover people who incur a catastrophic injury.) The NDIS will double existing funding, from around $6 billion to $12 billion. Importantly, it will scrap the old welfare model and install a new one of lifetime social insurance, whereby all taxpayers contribute. It will shift disability provision from the states to a single national body funded by the Commonwealth from general revenue.
Funding will be given directly to individuals with a disability, based on reasonable and necessary need, giving them crucial autonomy. They can cash out and administer their own care package, or use brokers provided by the system to organise one. While it may take time, ultimately service providers will compete for the disability dollar, giving choice, improving outcomes and stimulating innovation.
The NDIS will incorporate approaches from no-fault insurance schemes, such as the transport accident schemes in Victoria and NSW, where planning for a lifetime rather than a short-term crisis situation has proven both better for the recipient and more cost-effective. It will concentrate on early intervention. “Disability has access to absolute best practice in early intervention,” Della Bosca points out. He gives the example of children who can be helped by speech therapy in early primary school: “By nine or ten years old the speech impediment is serious and you have an education deficit, and maybe a behavioural problem. Problems snowball. By 15 you have a severe deficit, affecting their future working life. Then you might face paying $70,000 to $80,000 for institutional care. Had the child simply been given six months of intensive treatment all those years ago, none of this would have happened. If the intervention is timely, money is saved.”
In his role as minister for disability services, Della Bosca found this sort of equation replicated everywhere. Every day that passes without proper funding for early intervention is one more step away from the potential for independence in later life for a child with a disability.
The NDIS represents, then, in the words of one of its key architects, Bruce Bonyhady, a “paradigm shift”. Bonyhady, chairman of the Victorian disability service provider Yooralla, is a sober, considered man, with a quiet persistence and an analytical mind. He has been powerfully shaped not only by his time at Yooralla, but by his experience as a father of two boys with cerebral palsy. A seminal episode while working in the UK gave him insight into an alternate approach, as the British education system has a legal, statutory requirement to provide for a child’s needs. He also become interested in the work of Brian Howe, the former deputy prime minister in the Keating government, who has a strong interest in welfare provision. After Howe retired from politics, he took a Fulbright Scholarship to Germany to study Guenther Schmid’s work on European systems of social insurance. All this helped Bonyhady develop an intellectual framework for a system of lifetime care.
Equally important to the evolution of the NDIS was Bonyhady’s experience as an economist: he worked for seven years in Treasury. This father and service provider for people with a disability could understand more powerfully than most the unmet human need. But his time in the Treasury, says Bonyhady, convinced him that “it was the economic value system which was now dominant over the social.” No social justice issue, however compelling, would be successfully resolved until someone asked the crucial, tough-minded question: How much and who pays?
Bonyhady turned to John Walsh, a brilliant actuary for PricewaterhouseCoopers in NSW. Walsh knew the issue from the inside out. He had suffered a severe spinal injury as a young man while playing rugby league, which made him a quadriplegic. At the time Walsh had been studying mathematics and physics but was unable to go on to postgraduate work because of the lack of provision for people with a disability. A family physician suggested actuarial work. Walsh’s sharp mind and flair for numbers soon attracted attention. There was a woeful lack of statistics on disability so, when offered funding by a consortium of insurance companies, Walsh developed a database that led to the first Australian Registry of Spinal Cord Injury in 1990. He also made important contributions to the NSW Law Reform Commission in the mid 1980s, and developed an innovative insurance model that became the basis of the NSW Lifetime Care and Support scheme in 2006.
Bonyhady knew no one had done more to devise cost-effective schemes of insurance cover for catastrophic injury at the state level than John Walsh. Could he devise such a scheme for disability on a national level? The unflappable actuary set about the task.
By 2007, when Labor took office, the concept of the National Disability Insurance Scheme was starting to take shape. The 2020 Summit took up the idea enthusiastically. Kevin Rudd was sympathetic and behind the scenes Jenny Macklin gave crucial support. Important, too, was winning over Bill Shorten, the charismatic former union leader. As then parliamentary secretary for disability, he impressed with his empathy. Whatever cynics say about Shorten, few in the disability movement have anything but praise for him. Under his leadership the profile of disability was lifted from “the runt in the litter” of policy areas, as Bonyhady describes it, to near the top of the social policy agenda.
What Shorten said to Bonyhady, however, stopped him in his tracks. “Bruce, governments are just there to facilitate.” The former national secretary of the Australian Workers’ Union knew a thing or two about getting the numbers. It was a big scheme with a big price tag. It needed an unstoppable head of steam coming from a grassroots movement, compelling government into action. Then and only then would politicians act.
And there lay a problem.
Since the ’90s the movement advocating for the rights of people with a disability had been fragmented. A tension had developed between carers, people with a disability and service providers. “I went away to work in health promotion,” says long-time community and disability activist Rhonda Galbally, “and when I looked back there was a split in the movement. During the next decade, it was the carer voice that was in the ascendancy.”
For a long time it was unclear what the movement might reunite over. The NDIS was a call to action, but could they get it together? Shorten pointed out to Bonyhady what solidarity could achieve. As a union official, he learnt that workers on building sites who concentrated on the 90% of issues they agreed upon, rather than the 10% they disagreed upon, were the successful ones; the others got nowhere.
Bruce Bonyhady turned to Rhonda Galbally for help. Galbally was a well-known social policy and health advocate with invaluable experience as a CEO in the government, business, philanthropic and community sectors. She also had something else – the kind of interpersonal warmth and skill for conciliation that would be sorely needed. And Galbally’s own story goes to the heart of the tension.
Rhonda Galbally was just 13 months old when she contracted polio. While still a baby in need of her mother, she was hospitalised for several years with only rare visits from her family. She remembers a “babyhood of abandonment, loss and pain,” and crying “animal screams” for “losing my mum” when she had stints in hospitals for pointless operations and forcible treatments stretching her affected limbs. Such practice for children with a disability was once commonplace. For many it was even worse. Some spent their entire childhood and adolescence institutionalised, being treated as human vegetables in St Nicholas Hospital, a notorious Melbourne home for severely disabled children. The hospital withheld antibiotics from children suffering pneumonia; the prevailing attitude was: ‘Better for everyone if they died.’
The disability rights movement was a late flowering of the civil rights movements of the ’60s and ’70s, one of the new frontiers of social justice. Deinstitutionalisation was a central part of this movement. It overturned the prevailing idea that people with a disability were objects of charity and the cruel assumptions that in an earlier era had made them the dark focus of the eugenics movement. The profound insight of philosopher Simone Weil was at the centre of the values inspiring those advocating change: “Respect is due to the human being as such and is not a matter of degree.” The movement campaigned for the ideals and practices of equal opportunity. Yet embedded within it was something much deeper – the desire for recognition, the existential cry of every human being: see me, value me, respect me for who I am.
How much human hope was invested in the deinstitutionalisation of the late ’70s and early ’80s! It required a profound change in community attitudes. Galbally recalls how liberating it was to encounter the new term ‘person with a disability’, which places emphasis on the person first, and their differing needs in taking their rightful place amongst the citizenry second. Liberating, too, was the understanding that the impediments people with disabilities face are far more social than physical in origin.
Many of these barriers remain. When Galbally headed the government inquiry that produced the Shut Out report, it painfully revealed the existence of our two nations. Our society is designed for an exclusive, privileged club – citizens who are able-bodied.
Endless platitudes and feel-good phrases emanating from government departments – phrases such as ‘social inclusion’ – drizzle down on the heads of people with a disability. When as a person with a hearing impairment you can attend only ten cinemas around Australia because so few have provision for you; when your child is ejected from a childcare centre because they have special needs, meaning you can no longer work to provide for their care; when you are told that your disability means you are not a suitable recipient for a transplant organ but would make a suitable donor, thank you very much; when on a winter’s night you wait in your wheelchair at the bus stop watching buses whiz by carrying able-bodied people because not enough have ramps, you might be forgiven for feeling cynical about ‘social inclusion’. Indeed, one might go from feeling ‘shut in’ to ‘shut out’.
In history, timing can be everything. Deinstitutionalisation occurred at the same historical moment as the great leap forward into the free market neo-liberal age, and the feminist revolution. As the dollar was floated and tariffs lifted, cuts in government spending became the mantra. It became a sin to run a deficit and a virtue to have a surplus. We are currently one of the lowest taxing nations in the OECD, which means there is less money to allocate to essential social services for people with a disability and their families.
Moreover, the utterly humane move to close institutions was not a cheaper option. Just like a game of Chinese whispers, when disability rights activists cried “Freedom!” state treasurers translated this to mean “reduced costs”, and purred happily. Using the rhetoric of liberation, they shut down institutions such as St Nicholas Hospital but failed to institute new programs to replace them. Former live-in patients often ended up homeless or in prison.
Another justification for closing down institutions was the promotion of ‘care in the community’, which became a euphemism for care by unsupported families, most often women. By the ’90s the ‘shadow care economy’, rather than the government, was expected to pick up the tab for deinstitutionalisation. The old era had very clear assumptions about care; a married man worked and a housewife stayed at home. Along with her female kin, she was meant to do all the care work. Yet here, too, a revolution was underway. Women were now at work in ever increasing numbers. These family caregivers needed new labour market regulations, such as carer’s leave, to help them manage work and care. Yet, in the new economic order, such entitlements were not forthcoming.
Still today, many leave work indefinitely to care for a family member with a disability, eking out an existence on a carer’s allowance. Family bonds often fray or simply break under the strain. Extended families increasingly disperse, living in different states or countries, and are unavailable for extra support.
On all counts, deinstitutionalisation meant greatly increased care needs at a time when the private care workforce was diminishing. The result was an appalling care deficit. As a consequence, carers became as mad as hell.
Mad As Hell is a campaign led by two mothers of children with a disability, Sue O’Reilly and Fiona Porter. Earlier this year they sent a letter to the prime minister, offering her the chance to spend a day with them to “walk in our shoes”. They point out that the replacement value of informal care for the disability sector – provided by families of the shadow care economy – is $30.5 billion annually.
This invisible workforce is doing more than its fair share of the heavy lifting. If the NDIS was installed tomorrow, even with its $6 billion in additional funding, we would still need a massive care subsidy from families. They need support to do their essential work. At present there is a widespread shortage of beds in respite homes, which are a great asset to families who need a break. In South Australia recently all of the beds in respite houses across the state were taken by people relinquished to permanent care; that’s what can happen when families are exhausted and can no longer cope. “Not providing adequate support for carers now,” emphasises John Walsh, “requires increased dollars later … [Moreover] there is a ‘death spiral’ in the current system, with ageing carers unable to cope, giving up their adult children to expensive taxpayer-funded care, leading to reduced respite support and putting more strain on the remaining carers.”
As utterly compelling as the carer case is, talk of relinquishment is enough to send shivers through those who have been institutionalised. For people like Rhonda Galbally, separated from her parents at such a young age, it brings back terrible memories. Even more wounding is the way the media often takes up the caregiver case sympathetically and, in doing so, unthinkingly portrays those with a disability as a terrible burden. To have one’s existence depicted as a burden is to feel a blow struck at the very centre of one’s soul.
Yet standing back from the friction, one thing is striking. Both sides of the disability equation were being starved of the funds. The resulting tension was hardly surprising. The campaign for an NDIS recognised that common plight, and offered a remedy. Bruce Bonyhady’s call to Rhonda Galbally came at just the right moment. For some time, she had been on a new inward journey through psychotherapy. Her heart had moved to a different place from the angry one of the past, and she could “for the first time [see] my mother’s grief, pain and never-ending guilt. I was a mother myself, and maybe all those things made me able to see both sides.” A new empathy for the caregiver perspective emerged. The time was right for reconciliation, and to work constructively with disability service providers, too.
When Galbally drew people together – those with disabilities, their carers and service providers – for a discussion, in the hope of forming an alliance, the tension was palpable. To break the ice, Galbally suggested they go around the table and see what they could agree on. “When we got to dignity for people with disability, both sides agreed with heartfelt belief. We saw how much we shared. Tears welled up around the table. It was an incredibly moving experience.”
The outcome of that meeting was the National Disability and Carer Alliance. The alliance has demonstrated what unity can achieve. The public forum to launch the NDCA’s campaign for systemic change, Every Australian Counts, drew a large crowd of some 1200 people to the Etihad Stadium in Melbourne, as part of a National Disability and Carer Congress held on 2–3 May. There, Patricia Scott of the Productivity Commission joined Labor, Liberal and Greens politicians in backing an NDIS. For those who had seen the consequences of a fragile movement divided, it was a hard-won but precious political moment.
In her discussion of disability in Frontiers of Justice, the philosopher Martha Nussbaum points to the core failure in our practice of the democratic ideals of equal citizenship where politics only represents the interests of able-bodied, economically self-supporting citizens. It is surely a sign of our strange times that justice for people with a disability and their caregivers is put before a ‘Productivity Commission’, whose brief it is to make our nation more economically efficient. It is for this reason that I was initially sceptical of what such a commission might achieve.
Yet reading the transcripts is a moving experience. As the commissioners travelled around the country, in the careful and respectful way they listened to people, we see democracy at work. We hear the hitherto invisible voices of our two nations speak. We learn of a wife who forever grieves that she could barely respond to her dying husband in last months of his life because she was so exhausted by unsupported care, of a sister who gives up work and is about to lose her house in order to care for a sibling, of elderly parents terrified of what will happen to their severely disabled child when they die.
In encountering that shadow world of care, we see families unstintingly honouring love’s labour, while living achingly, unnecessarily difficult lives. We confront the painful mismatch between raw unmet human need and what our wealthy nation provides. The case for an NDIS becomes compelling. It must be the beginning of the road, however, not the endpoint, as the NDIS covers only the most severely affected. There are many other people impacted by disability, outlined in the Shut Out report, who urgently need the barriers to work and social participation removed. Any agency administering an NDIS must act as a powerful advocate for these people. But, surely, it is our most urgent social reform.
What chance is there for the NDIS succeeding? The NDIS is a proposition of unusual political deftness; a rarity in Australian politics. Embedded in the scheme are two powerful ideals more often in conflict than in harmony. One concerns the individual maximising opportunities in the marketplace, developing initiative and enterprise in a framework of economic prudence. The other centres on social justice, our capacity to stand together and utilise our nation’s wealth to develop a strong safety net in order to care for those in need.
The scheme appeals to our altruism, our desire to help our fellow Australians, but it also appeals to our self-interest. Currently we are all uninsured against disability. The NDIS would give security to all Australians, appealing to our natural caution. We like Medicare. We believe in home insurance, car insurance and private medical insurance. The NDIS is to be paid for out of existing general revenue, rather than a politically difficult new tax. That said, if we want better health, better education (to use Julia Gillard’s election slogan) and disability services, then politicians cannot forever behave like Santa Claus, handing out tax-cut gifts at every election. As Patricia Scott points out, the last round of tax cuts would have more than paid for the NDIS.
Perhaps all this is why a scheme with a big price tag has gained such unusual across-the-board political approval. Yet the politics of the NDIS remains finely poised. As yet uncommitted are Julia Gillard, Wayne Swan and Penny Wong. As successful as the campaign has been, “I don’t reckon we have got the key people to the table yet,” says one advocate ruefully. Bonyhady describes the current feeling in the National Disability and Carer Alliance as like being two goals up at quarter time in a football match – in front but still a way to go.
Every Labor government wants to leave a legacy of reform. What will Gillard’s legacy be? The NDIS represents an opportunity for the floundering Gillard. It is a truly significant reform, as significant as Medicare and compulsory superannuation, and one which goes to the heart of the Labor tradition. And, miraculously, Gillard could be the beneficiary of support from the Greens, independents and the Coalition on this issue. When the Productivity Commission presents its Final Report to the government at the end of July, any opposition from Tony Abbott will look heartless as well as hypocritical. If Gillard does nothing, she risks looking indecisive and lacking in compassion. It will be time to act boldly, take the initiative and shift onto the front foot. Labor has nothing left to lose.
While the Gillard government deliberates, Lillian Andren waits. She waits for the day the carers come to wash her, waits for the dignity that could be bestowed by a decent care system. Above all, Lillian waits for Australia to place justice for people like her and their carers at the centre of our nation’s heart.
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