Home Is Where The Heart-support Is

Home Is Where The Heart-support Is

The Sunday Age

Sunday December 21, 2008

TOM REILLY

There is an urgent need for accommodation for disabled people, reports Tom Reilly.

TONY McDonald has a saying she often repeats to herself: "Don't get sick - you haven't got time, and don't die, because there is no one to replace you."

It's a mantra the 77-year-old and her "toy boy" husband Arch, 76, stick to as best they can. That's because the couple are the primary carers for their son, Rohan, who has Down syndrome and other medical conditions that have left him severely disabled. It's a round-the-clock job they have carried out since his birth 35 years ago.

The McDonalds are among hundreds of elderly Victorians who are struggling to support disabled adult sons and daughters in their own homes. But what they really want is for Rohan to be able to live in a place where he can enjoy friendship while receiving the necessary support to live independently from them.

But there is a chronic shortage of supported accommodation facilities.

About 1400 disabled people are officially waiting for a vacancy in Victoria, but the true figure is believed to be much higher.

Only those classed as in "immediate" need are placed on the register, a tactic that hides the real demand for services.

Now in their mid-70s, and with their concerns for Rohan's future growing, a tiny glimmer of hope has emerged. It is anticipated an ongoing parliamentary inquiry into accommodation for people with disabilities or mental health issues will recommend the Government allocate more money to such housing.

"Anybody involved in the care system knows there is a severe shortage of accommodation to meet the needs of Victorians and we hope that this inquiry will bring about the political will needed to change that," explains Kevin Stone, who represents the Victorian Disability Advocacy Network, which comprises more than 30 advocacy groups.

Rohan - who also suffers from a condition known as Eisenmenger's syndrome, a heart condition that requires that he use an oxygen mask for up to 14 hours a day - had been on a housing waiting list for years, but was taken off because his need was not considered "immediate", according to Tony.

"The waiting list was a bit pointless because it was so long. We know the only way Rohan would get full-time accommodation is if we relinquish care and allow the Department of Human Services to take over his care," Tony said.

"We would love Rohan to be offered accommodation in a place where he feels happy and secure, but at the moment that's a bit of a dream as these places don't really exist.

"All I would like to see is for people with disabilities to have an opportunity to call somewhere home, a place where they can feel settled and pursue their aspirations like anybody else in the community. Surely that's not too much to ask?"

But the McDonalds are reluctant to hand over care of Rohan when they know the chances of a suitable home being found is a long shot at best.

And so for the foreseeable future they are resolved to caring for him at their Greensborough home.

The Disability Advocacy Network and three other charities have produced a combined submission to the parliamentary inquiry to provide a united voice calling for change.

The paper's key points are:

That people with disabilities have a right to live in their communities in suitable accommodation.

That all large institutional homes should be shut down.

That there must be substantial long-term investment in supported accommodation.

That government work with families to provide solutions that are right for each individual.

The charities also point to a massive drop in State Government funding for supported accommodation since 2005. They claim less than $5million has been provided specifically for those with significant support needs in the past three years. This compares with $150million in funding given to this groupbetween 1997 and 2004.

Kerry Presser, from the Victorian branch of National Disability Services, estimates the state needs to invest $42million a year over the next three years to halve the current waiting list for supported accommodation. "This kind of funding would allow a lot more people to live in homes where they would be able to develop personally and live their life to the fullest," she said.

"At the moment the whole system is crisis-driven, which means there is little room for any planning or long-term thought."