Decline in Disability Alternatives has Parents at Breaking Point

Parents of children with profound disabilities are being compelled to do a ”DOCS dump” due to a lack of support, a new report says.

The report by Anglicare Sydney recommends state funding for a shared care residential school model in which children would be in care during the week and with their families on the weekend.

About 100,000 Australian children have an intellectual or developmental disability, according to the Anglicare report, which found there had been a rapid decline in suitable residential placement for disabled youngsters with no alternatives provided.

Anglicare Sydney made the recommendations after revealing distressing rates of depression, suicidal thoughts and financial destitution among parents of children with disabilities.

Director of advocacy and research at Anglicare Sydney, Sue King, said three parents in the study, to be released on Wednesday, had surrendered their children to the state after reaching breaking point.

”There is an assumption that parents should be able to cope with the sorts of issues these children present with,” she said.

”They get to a point where they just can’t do it any more. The parents in the group spoke of the trauma and the grief of having to relinquish their children because they just could not cope.”

Carers Alliance secretary, Mary Lou Carter, said the pressure of looking after her son Nicholas, who has the rare Angelman syndrome, drove her to the brink of a nervous breakdown. ”For the first 12 years of Nicholas’ life he would only sleep about two hours a night,” she said.

”When he had episodes of epilepsy, he could go days with no sleep. I don’t think there is a greater torture. I have not been able to recover. It totally destroys your peace of mind. It is a physically, mentally and psychologically demanding situation.”

Mrs Carter sought treatment for severe depression and describes the lack of support for families as immoral.

”Depression can spiral you into taking your own life,” she said. ”It is perverse to be pushed to the point where you can’t take it any more.”

Bernadette Moloney, whose son Charley Armstrong has severe disability, said stories she heard from other parents are heart-breaking.

”The marriage breaks up, the mother has a nervous breakdown and she does the DOCS dump,” she said. ”These people love their children but, with the best will in the world, 24/7 is just too much.”

Ms King said: ”The resistance harks back to an old model where children with disability were cast into an institution.”

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Parents, Families, Children

Rachel Browne

The Age

Date published:
Wed 6th Nov, 2013