Myopic government penny-pinching comes at great cost to disabled

Sue O'Reilly, Weekend Australian, 26Feb 2011

IN the spinal ward of a Sydney teaching hospital, two young men are lying in adjacent beds.

One sustained severe spinal injuries in a car accident, the other after he was speared headfirst into a sandbank while surfing.

Like most Australians, they'd never thought for one moment they could become disabled. Neither has a clue about Australia's disability care and support system and how it works. Now their futures depend on it.

The first man can look forward to intensive rehabilitation services. Already, a wheelchair and hoist are being organised so he can go home, along with all necessary home modifications, transport and home help services.

All this is being provided speedily and free of charge because NSW, since 2006, has had a no-fault lifetime care and support scheme for anyone left permanently disabled because of a motor vehicle accident, funded by a levy on NSW drivers.

This man's post-accident care and rehabilitation will be expensive but he will be back home within weeks and almost certainly back at work within 12 months.

The second young man, the surfer, faces an entirely different future. His hospital treatment is covered by Medicare but he has no automatic entitlement to any of the equipment and services he's going to need to return home.

While a hospital social worker tries to find somewhere else for him to go, he will needlessly remain in an acute care bed for many weeks after the other young man has been discharged.

Eventually, he will have to be moved to an aged-care nursing home because that's the only option. He won't get the intensive, ongoing rehabilitation therapy he needs, and his family faces a long fight with various government agencies for equipment and services so he can move back home.

His prospects look depressingly bleak. It's why a former head of NSW's Disability Department, Brendan O'Reilly, admitted a few years ago he'd told his wife that if he fell off a ladder and broke his back, to put him in the car and "crash it into a wall".

All across Australia, it's the same dismal story for anyone not covered by a transport accident or workers compensation scheme.

In Perth, Lesley Murphy spent two futile years applying to Western Australia's Disability Services Commission for help with caring for her son Conor, 21, who has the degenerative muscle-wasting disability Duchenne's muscular dystrophy and needs intensive round-the-clock assistance.

Last November, after her application was again rejected, again without explanation, Murphy did the only thing she could think of. She sat down and wrote to every one of WA's 102 state MPs, describing in graphic detail what life was like for her family and begging for help. "The level of despair that has resulted in being refused funding yet again is beyond description," she wrote.

Apart from a support worker funded to take Conor to university for seven hours each weekday, Murphy told MPs, her family was on its own for the remaining 133 hours of each week. "My husband and I work 17 hours a day during the week and 24 hours a day [in effect] at weekends, with no holiday pay, relief or workers compensation," she wrote.

"We provide 133 hours of free care a week, in effect operating an unlicensed, unregulated and unfunded nursing home on behalf of the state and federal governments. As the staff in the 'Murphy Nursing Home', the ideas of Fair Work Australia are laughable in relation to our workplace conditions.

"All this time, I am dealing with the grief of knowing my son is dying and there isn't a damn thing I can do about it. Added to that despair is the conviction no one cares. The whole process of being forced to beg for help to care for my son is totally demeaning. I don't even want to think about what this process is doing to his emotional health and wellbeing, and please also bear in mind he probably has only a few more years to live anyway."

To Murphy's surprise, MPs from across WA contacted her to express their concern, and soon after the WA government managed to find emergency funding of $16,000 for the family, which is used to employ six people to be with Conor from Friday afternoon until mid-afternoon on Sunday.

She says the help has transformed the family's lives. But the funding is only for four months.

Obviously, something is profoundly wrong with a disability support system in which a fortunate few get all the help and support they need to maximise their future independence and ability to work, the majority get bits here and there, more or less at random, and many get nothing. The long-term costs of myopic government penny-pinching are astronomic.

Lack of basic supports prevent tens of thousands of people with disabilities and carers from working and paying taxes, families break down under the strain, and people with disability and chronic mental illness are shockingly over-represented in jails and homeless shelters.

Yet, to date, the state of disability care and support services has been a backwater issue in Australian public life. Politicians have done nothing for years but fiddle at the edges, and disability has never rated as an election issue at state or federal level.

All that is about to change however with the release on Monday of a Productivity Commission report canvassing the introduction of a national disability insurance scheme, operating along similar lines to NSW's lifetime care and support scheme and Victoria's transport accident commission. The reason the commission's recommendations will spark long-overdue political and public interest in Australia's disability support system is because one of the options to be presented for funding an NDIS will be a permanent increase in the Medicare levy of about 0.8 per cent.

The report, to be released by Assistant Treasurer Bill Shorten on Monday, is at this stage only a draft, with the final recommendations not due to be delivered until July.

Publicly, therefore, the government's and opposition's reactions next week will continue to be vague and noncommittal.

But behind the scenes both will be busily weighing up the electoral pros and cons of supporting such a landmark social and economic reform.

When he was federal parliamentary secretary for disability services, Shorten frankly admitted in a newspaper interview a year or so ago he was having trouble convincing many senior members of the Rudd government that sweeping disability system reform would be "a vote winner, not a vote loser".

With focus group research so far showing that many Australians personally unaffected by disability are not interested in any new form of compulsory disability insurance, that situation is unlikely to have changed.

But this year, with the Gillard government barely clinging to power, the electoral considerations of introducing a disability scheme have taken on fresh significance.

The government and Tony Abbott's opposition face a very difficult decision after July.

Do they risk the possible displeasure of the electorate by supporting the introduction of a new national lifetime disability care and support scheme, funded one way or other by all taxpayers -- another "great big new tax", as Abbott might put it?

Or do they risk the wrath of about two million Australian voters with disabilities, along with their carers, families and friends, and thousands of people working in the disability field, whose hopes have been raised sky-high since the Productivity Commission inquiry was announced, and whom Gillard and Abbott have publicly pledged they won't "let down"?

Can either political side stand in the way of a reform that has already attracted an almost unprecedented range of support across the political and social spectrum, including the Australian Medical Association, Victoria's recently elected Liberal government, the ACTU, the Uniting Church, the Greens, the Nationals, Tasmania's independent federal MP Andrew Wilkie and hundreds of disability, carer and service provider organisations?

Then there's the longer term national interest to consider. All the indications are that in its report the Productivity Commission will endorse the view that, without far-reaching structural and financial reform, Australia's dysfunctional, poorly designed disability support system is leading the country towards a social and fiscal catastrophe.

In coming decades, the projected growth rate in the number of Australians with severe to profound disability is two to three times the population growth rate as a whole.

As the population ages, as medical advances keep more people with severe disabilities alive and as the army of unpaid family carers on which governments so heavily rely shrinks, costs -- and need -- will explode. The lack of core support services such as early intervention, therapy and essential equipment means people often end up far more disabled than would otherwise be the case, and is driving more and more families into severe emotional, psychological and financial crisis.

The Disability Investment Group, a panel of business leaders established by Shorten to explore innovative funding ideas to meet the needs of people with disabilities and their families, didn't pull any punches when it reported in 2009.

"The lack of proper planning and integrated service delivery is a national disgrace, and with increasing demand for, and increasing cost of, these services, the situation for people with disabilities and their carers will undoubtedly worsen so long as current arrangements remain in place," it stated.

"Fundamental change is required . . . The current system is under considerable stress, and marginal change will only lock in models that will continue to fail to meet the needs of people with disability, their families and carers."

Former Macquarie Bank executive, DIG member and disability reform campaigner Bill Moss says the release of the Productivity Commission's report at a time of such electoral vulnerability for the government presents a "once in a lifetime" opportunity for those wanting to see radical change.

"For all of us who know how bad the current system is, 2011 is our very own Cairo moment," Moss says. "We need to take to the streets in our hundreds of thousands if necessary, and send politicians everywhere the message that if they don't do the right thing at last, then they will pay the price at the ballot box."