April 3, 2010
Giulia Nesci, 16, and mother Ursula, who is worried about the day her daughter turns 18.
Carers are “mad as hell” about the lack of a national insurance scheme, writes Julie Szego.
For single mother Ursula Nesci, her daughter Giulia’s 18th birthday is a milestone laden with anxiety. Giulia, 16, has Rett syndrome, a neurological disorder that becomes apparent between six and 18 months of age.
”She is totally dependent in everything,” says Ms Nesci, 51, who has needed shoulder surgery after years of hoisting Giulia into wheelchair, bed and shower.
Skilled care and respite services make Ms Nesci’s life just bearable. But they lapse once Giulia – who ”lights up the whole world” when she smiles – turns 18. And beyond the immediate challenge of scrambling for alternatives looms the larger problem of what happens once Ms Nesci’s capacity to care runs out.
With long waiting lists for permanent accommodation that prioritise older parents, Ms Nesci fears her only option ”will be to relinquish her at respite, and then watch her being shunted from one centre to another. And that would destroy me.”
Ms Nesci’s story is hardly unique given Australia’s chronically underfunded and fragmented system of disability support. But the anger of carers and their charges is past the tipping point. They have declared themselves ”mad as hell” and are gearing up for an election-year fight.
They are asking people to pledge, via a new website, to vote in state and federal elections only for parties that promise to introduce a national disability insurance scheme.
The scheme, say proponents, would put the needs of the disabled first. It would end our current crisis-driven approach to providing services. It would also end the lottery, by which people injured in a car accident, for instance, get more entitlements than those who can only blame genes for their fate.
”A fundamental, transformational reform” is how one of the campaign organisers, Sue O’Reilly, describes the goal. She believes the planets are aligning to make disability a politically potent issue. An estimated 1.5 million people have a severe disability, and this is projected to grow to 2.3 million by 2030 as the population ages. About 2 million people, including carers and professionals, are thought likely to vote on this issue alone.
Ms O’Reilly says the campaign has secured pledges ”around the 3000-mark, and they’re coming in at about two a minute”. She believes disability activists could be as powerful as the environmentalists who propelled Bob Hawke to power in the 1980s, the ”grey power” lobby in the 1990s and the Women’s Electoral Lobby, which put issues such as childcare on the agenda.
The Productivity Commission is investigating the feasibility of an insurance scheme, with its final report due in July 2011. Advocates say the scheme would eventually pay for itself through reduced health and welfare costs. ”Governments in total are spending about $20 billion a year on this [disability services] and they’re getting appalling outcomes,” says Bruce Bonyhady, chairman of community service provider Yooralla. ”You’ve got cases of people waiting years for equipment, like wheelchairs, and when they arrive they don’t fit.
”You’ve got young people in nursing homes because it’s cheaper … wherever you look the system is in deep trouble.”
The federal parliamentary secretary for disabilities, Bill Shorten, says disability is underestimated as a political issue by both major parties.