Saturday, April 26, 2008

Family stricken by seizure disorders and Autism feel abandoned by Queensland

A Caloundra family battling to cope with two severely disabled children claim they have been abandoned by Queensland authorities in their hour of need.

Michael Graham and partner Rosemaree Butler never know how many seizures their six-year-old son, Johnny, will have each day or how badly he will be hurt.

At the moment he is averaging 30 to 40 blackouts caused by his epileptic chronic toxic seizures, but on really bad days that can climb to 130.

And when Michael and Rosemaree haven’t got their hands full dealing with Johnny’s distress, they have to cope with seven-year-old Chloe, who suffers from autism as well as epilepsy.

Both kids have been in need of special care since they were two.

Three weeks ago the two stressed-out parents steeled themselves and made the move from Wynnum to Little Mountain so their children could attend the well-resourced Currimundi Special School.

And while they are over the moon with the new learning environment, they say life at home is a living hell due to lack of support from state government agencies.

Johnny’s face is badly damaged from constant falls on the bare concrete floors of their department of housing home, which now has some matting – thanks to the Society of St Vincent de Paul.

But the deepest cuts have been inflicted emotionally by the latest rejection by Disability Services Queensland of special support funding for their children.

Michael is struggling to comprehend their fourth rejection for funding that could help meet their children’s special needs and provide urgent parental respite.

The strain was evident in Michael’s voice as he told how their life was threatening to unravel.
“They are putting us through hell,” said the invalid carer, who gets $100 a fortnight on top of his normal pension. “We weren’t going to put in for the latest application for funding, not after the last three rejections, but DSQ said this time they would look after us and things would be right.

“They seem to set us up and then keep knocking us down – we haven’t had respite in three months and we badly need it.

“Johnny needs a $40,000 special wheelchair to go to school because of his seizures, and that money would help towards that.”

Michael said they had been hoping for funding of $15,000 to $20,000 to help provide for the children’s special needs, and were not told why their application had again failed.

They have been unable to talk to the DSQ about arranging a funding appeal, which must be lodged in 10 days, and fear they are being fobbed off.

“It’s bad enough having the stress of looking after Johnny, and then you have to deal with Chloe, without having all this extra worry,” Michael said.

While Michael appreciated the housing authority moving them into a home in Caloundra in a relatively short space of time, promises to provide additional fittings had not been met.

“They said they would look after us and even provide shatter-proof glass and specially rounded edges,” he said.

A DSQ spokesman could not be contacted yesterday.


Post a Comment

<< Home