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<p>Photo by Mike Bowers.</p>

Photo by Mike Bowers.

14 year old Grace Forrest with her mum Clare Ainsworth.

Hidden In Plain Sight (Part One)

Australia has a dismal record in helping its disabled, including three-quarters of a million people with a severe or profound disability. But a community campaign that draws from the “Yes We Can” handbook could be about to reform the system.

It used to be in the not too recent past that at some point in the early life of a child with Down syndrome, the phone would ring at the child's house and on the line would be a representative of some government agency. The aim of the call was to check that the government really needed to keep providing welfare support to the child, her family and her therapists.

"They'd ask, 'Does the child still have Down syndrome?'" recounts Kirsten Deane, the executive director of the National Disability and Carers Alliance and herself the mother of Sophie, a child with Down syndrome.

"The parents telling me this story would then joke that they'd said to the caller, 'Hang on a minute, I'll just check!'" she recalls, laughing at the absurdity of it. The parent would then sing out the child's name — pause — before confirming, "Yep. Looks like she's still got Downs."

That story gives you a sense of how much is wrong with Australia's disability support system.

Put bluntly, it's a shambles.

“You’re asked questions like: ‘Do you think you will have to relinquish care of your child if this [service] doesn’t continue?’ I mean I don’t think that’s really an appropriate question to be asking. ‘Will your marriage break down if you don’t get this assistance?’ they will ask you. That’s the stuff that needs to be addressed.”

Grossly bureaucratic and vastly underfunded, for several generations the system has relied on carers — an unpaid army of often elderly parents and family members — to do what the state has failed to do: provide the compassionate care and support necessary for the hundreds of thousands of Australians who have a severe or profound disability.

In the past few months, the system has been exposed by two key reports, both prepared by organisations known less for their social activism than their economic rationalism.

Australia's Productivity Commission estimates the disability services sector receives only half the funding necessary to meet the needs of Australia's disabled population.

A second report, by global professional services firm PricewaterhouseCoopers, has quantified the predictable result: 45 per cent of disabled people in Australia live near or below the poverty line. The standard for countries in the OECD is 22 per cent. Put another way, a child born with a disability in Australia this year is 2.7 times more likely to grow up to live in poverty than the able-bodied infant in the next crib. That puts Australia at the bottom of the heap among OECD nations.

A big part of the problem is they can't get jobs: Australia is ranked 21st out of 29 OECD countries in employment participation for the disabled.

It's been this way for generations, since the mid 1970s when the Dickensian, residential institutions that housed many disabled people, particularly those with developmental or psychological disabilities, began to close. The disabled were encouraged back into the community, where it was imagined they would take their place alongside their fellow citizens.

The reality of course, was that the burden of care fell on families, and funds saved on institutions never were funnelled back into community programs.

But for most Australians, the plight of carers and the unfair treatment of the disabled have remained "invisible", intractable policy problems. Wilfully ignored. Hidden in plain sight.

In the past few months, people trapped in this system are suddenly beginning to hear that things might be about to change.

Under discussion is a reform every bit as significant as Medicare, the universal health system introduced in Australia in 1975.

By 2018-19, a new National Disability Insurance Scheme, devised by the Productivity Commission, would boost the annual budget for disability services by at least 90 per cent, to AUD13.6 billion.

This new super agency promises to strip out the layers of bureaucracy and inefficiency to give all Australians with a significant and ongoing disability long-term care and support. Critically, children in early-intervention programs would be covered, offering them timely access to the type of intense therapy which is most effective when offered as early as possible in a child's life.

<p>Supplied photo.</p>

Supplied photo.

Kirsten Deane, executive director of the National Disability and Carers Alliance.

Currently it's hard for people seeking to access services to even work out what help is available. Many in the system feel that they do constant battle with a shape-shifting, threadbare support network designed to withhold funds — providing at best bread-and-water support rather than the full measure of what is needed.

"You get your diagnosis or get told there's a serious problem and then you are just left. There's no system for letting you know what services are out there. You stumble upon them," says Clare Ainsworth, whose daughter Grace, 14, was born with a rare genetic difference. Documented only five times in the world, it has left her cognitively impaired, unable to talk and with limited fine motor skills.

"It's very frustrating because all these needs are quite predictable. At each stage of life it's quite predictable what families and children are going to need and it's frustrating that you still have to talk to other parents to find out what's out there. You hear, 'Oh there's funding available through such-and-such a scheme and you have to apply for it.' And if you don't have the contacts, it all just flies by," she says.

A key find for Clare was FRANS, a non-profit community organisation which supports people with disabilities in the inner-west of Sydney. Like all the children in the photos which accompany this story, Grace attends weekend, after school and holiday activities at FRANS, one of the few centres which provides such a diverse and innovative range of programs for people 5 to 65 years. Like many other such groups Australia wide, it struggles to survive financially.

French-born Emmanuel Boumard, whose son Gabriel was born with cerebral palsy and displays autistic traits, has been battling the system for the 16 years of his son's life.

"I want to scream. You have to demand — or not so much demand but ask — so many times until you get something, say speech or occupational therapy, that you give up with the system," he says.

"There was an incident three years back. We applied for, I think it was OT [occupational therapy] and we forgot about it. And two years later, we got a call saying, 'You've reached the top of the queue. You're entitled to services.' We didn't even remember we had applied!"

Cleary, Gabriel couldn't wait years for occupational therapy. "We went privately, sometimes from our own pocket, because we couldn't wait," he says.

“I want to scream. You have to demand — or not so much demand but ask — so many times until you get something, say speech or occupational therapy, that you give up with the system.”

"It is very difficult to find your way. You give up. You give up [on the system]. You don't want to deal with anyone because you get frustrated. How can it be changed? I don't know. It's a vicious cycle."

Ruth Pilkinton's husband, Paul Barry, was just starting to notice the onset of an extremely rare motor neurone disease nine years ago when their son, Daniel, was born. Three years later, Daniel was diagnosed with "pretty severe" autism.

While Paul can no longer speak easily, when the husband and wife are interviewed on the phone they laugh a lot and are determinedly optimistic, traits that have been severely tested over the years in trying to secure services for their son.

"You have to reapply for services each year. So we're coming up to July and don't know whether we're going to have respite care next year. If we [don't] have that, we wouldn't be able to function as a family. I wouldn't be able to go to work," says Ruth.

"They make you [fill out] a 40-page document, I kid you not, in which you have to go on at length about how terrible your life is. You have to make your life sound just a total disaster to get access to anything," she says. "You're asked questions like, 'Do you think you will have to relinquish care of your child if this [service] doesn't continue?' I mean, I don't think that's really an appropriate question to be asking. 'Will your marriage break down if you don't get this assistance?' they will ask you. That's the stuff that needs to be addressed."

Paul adds, "Every provider also asks for different information, so you can't use a database of answers. They even vary the forms from year to year! For people who just want to get on with their lives but need some support, it's cruel and unusual punishment." You can read his answers in full on his blog.

Paul and Ruth count themselves as the lucky ones. They have spent more than $100,000 on wheelchairs, other devices and various modifications, which have allowed Paul to continue his job in medical publishing. They have a friend who has been waiting three years for a motorised wheelchair.

Kirsten Deane says its lack of funding means the system is set to respond to crisis rather than the routine needs of people such as her 11-year-old daughter, Sophie.

<p>Photo by Mike Bowers.</p>

Photo by Mike Bowers.

16 year old Gabriel Boumard-Litzki and his father Emmanuel Boumard.

"There's no interest in making sure Sophie gets really good early intervention — speech, occupational therapy — to make sure she gets the best start in life possible. No-one is looking at that. They are looking at what could we possibly squeak away with doing this year. And when a kid has Down syndrome and the family is not in crisis, their needs are not complex, then the answer's not much," she says.

"In the end, nothing happens until there's a crisis, and then they come up with a solution."

The PWC report calls this the death spiral: because there are not sufficient funds to provide support, the disabled and their carers often battle on until they reach crisis point. Then an expensive, emergency solution must be found. This further starves the system of funding. The situation snowballs. And more and more families are forced into crisis.

Imagine then the wary optimism about the new National Disability Insurance Scheme. It remains a little-understood proposal in a Productivity Commission document.

Yet despite a hung Parliament and a period in which the political system is obsessed with balancing the federal Budget, there is a feeling that this might actually happen.

Everyone can feel the currents of change.

But very little is understood about what's driving it and why suddenly, after years of neglect, comprehensive reform might be just a few years away.

2 comments on this story
by Bob

Great article about something really important but………as usual we get the obligatory "burden of care" comment. We don't usually talk openly about those we value and love as being burdens. What people with disability need, even more than adequate funding, is to be genuinely valued as citizens and fellow human beings. Continued references to people with disability as burdens to their families, and to society as a whole, simply serves to justify bad treatment. After all, someone might decide they should relieve us of our burdens…….like they did in 1930's Germany.

March 29, 2012 @ 6:35pm
by Elisabeth

Thanks for the great article - I went to one of the consultation forums that Every Australian Counts conducted in the lead up to the NDIS campaign.The room was packed with desperate and despairing parents tired of seeking help for their children from a broken and chaotic system. And yet these same people have now been mobilised thanks to the amazing strategies and practical assistance of the Every Australian Counts organisers. Let's hope the NDIS becomes a reality and not shunted to the side by politicians keen to be seen as sympathetic but not prepared to put the dollars towards implementing it.

April 4, 2012 @ 6:16pm
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