Tiring disability cash chase for Brunswick family

Moreland Leader
Suzanne Robson
28Apr08

LIKE most kids, six-year-old Levi likes swimming and playing with cars.

Except life is a lot harder when you can't talk or walk, and have severe seizures.

Brunswick's Penny and Matthew Dodds have been forced
to give up their full-time jobs to care for their child Levi,
who has Anglemens disease. Picture: Kylie Else.

The Brunswick boy has Angelman syndrome, a genetic condition that results in physical and mental disability, epilepsy and sleeping problems.

His parents, Penny and Matthew Potocnik, carefully feed him four types of medication daily, put on his orthotics, and get him and his wheelchair on to the school bus.

The Potocniks rely on the State Government's Aids and Equipment program, but they are frustrated with its inadequacies.

Ms Potocnik said the program covered only just over half of what they needed, and parents sourced the rest by begging to charities and other government funding programs. The Aids program footed more than half the cost of Levi's recently bought wheelchair, but the family still needed to scrounge more than $3000 from other programs. He could outgrow the chair in two years, when the funding fight will start again.

And while Levi has a wheelchair, the family has fought for a ramp and a $15,000 bathroom modification for the past three years. Both were recently installed, but the program gave no funding for the ramp and only a quarter of the bathroom bill. The rest came from other funding packages.

"I think that was the defining moment for me when I thought this is just so wrong," Ms Potocnik said. "We are both doing the best to look after our son, by not putting him into care, but we're just not getting the support to do that well."

The couple were forced to leave their professional jobs to care for Levi, and now work part-time with a combined income of about $43,000.

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Association for Children with a Disability spokeswoman Sarah Barton, whose organisation is part of the Aids and Equipment Alliance, said there were inappropriate restrictions, including once-in-a-lifetime restraints on home modifications and no subsidies for second wheelchairs. She said there were unacceptable waiting lists for aids which were putting the disabled at risk.

"It means the potential for injury, children are at risk of scoliosis and adults suffer," Ms Barton said.

"Parents are also in danger because they are doing the lifting in and out of wheelchairs."

Brunswick's Penny and Matthew Potocnik, who care for their disabled son Levi, 6, said families like theirs got far too little support.

Mr Potocnik said one of the major problems with the aides and equipment program was that it did not include vehicle modifications.

Currently Levi travels four hours each day on a bus to get to a school 20 minutes away.

Mr Potocnik said he would happily drive him if they could afford a $30,000 modified vehicle equipped for a wheelchair.

A report commissioned two years ago by former community services minister Gavin Jennings into the sustainability of the program advocated a doubling of the current Budget.

Ben Ruse, spokesman for Minister of Community Services Lisa Neville, said last year's Budget allocated $20.3 million over four years.

Mr Ruse said that from late May vehicle modification would be funded, and restrictions on home modification would be reviewed.

But Ms Potocnik said it was still unclear who would be eligible for vehicle modifications and how much money they would get.