Adele Horin, smh
April 11, 2008
IT WAS a desperate cry for help when Sharon Guest and Stuart Neal refused to collect their five-year-old daughter, Jessie, from Sydney Children's Hospital at the end of a two-day stay for tests.
To abandon her in hospital was the only way, experts had advised them, to secure the help they needed to cope with her profound intellectual disabilities, which were tearing their home life apart.
"It was horrific leaving her," said Ms Guest, 51.
Jessie had been diagnosed eight months earlier with a devastating genetic condition known as Sanfilippo syndrome, which causes progressive, irreversible brain damage. She could not hear properly or speak, her mental development was delayed, she was incontinent and was constantly on the move.
But it was the sleep problems, a symptom of the condition, which had proved the family's undoing over two years. Jessie would wake for the day at 2.30am.
"The hospital social worker asked me how much sleep I'd had. I told her five hours in five days," said Mr Neal, 51.
After two weeks in hospital, Jessie was reported to the Department of Community Services as a child at risk whose parents could not care for her.
To get help, Ms Guest and Mr Neal had to relinquish temporary care of Jessie to DOCS.
But the couple, who live in Randwick, were distraught when DOCS moved her to Newcastle to live in a house with round-the-clock carers provided by an agency at a cost to the state of about $9000 a week.
They are permitted to see Jessie two weekends in three, and say their daughter is hysterical when they part, and has been shifted to three different houses since December.
Ms Guest broke down continually when describing the family saga that will be a focal point of a public forum being held today by the Special Commission of Inquiry into Child Protection Services appointed by the NSW Government. As part of its brief, the inquiry under Justice James Wood will examine the adequacy of services, especially respite, and their role in preventing disabled children from loving families entering the child protection system.
Jessie was adopted from China when she was 20 months old, and Ms Guest soon suspected she was not developing appropriately.
It was the failure of the Department of Ageing, Disability and Home Care to provide the support the family had long sought that forced their hand, the couple said.
They had wanted the department to arrange for Jessie to live in a group house in Sydney for half the week, so that they could care for her the other half. But its policy prevents out-of-home residential care for children under 12, a reaction against the bad old days when "retarded" children were put into big institutions.
"It is ironically absurd that the Department of Disability's ethics policy prevents it offering any residential care for young children," Ms Guest said, "and that has led us to relinquish care of Jessie to another department, DOCS, that totally removed her from the family and placed her in residential care in Newcastle."
The couple, who last year adopted another child from China, Bi Bi, 3, said they wanted Jessie in Sydney where they could see her and take her to school.
A spokeswoman for the Department of Ageing, Disability and Home Care said that, regardless of their disabilities, children younger than 12 should be given every chance to grow up in a family group, be it a biological family, adopted family or foster situation.
A spokeswoman for DOCS said departmental caseworkers had spent a long time looking for an appropriate foster carer or home in Sydney for Jessie. When nothing suitable could be found, the department chose the small, caring group home in Newcastle.
She said DOCS understood the travelling time made it difficult for the parents but the department was required to base its decisions on the child's best interests. Jessie had developed a friendship with another young resident, attended kindergarten and received speech and occupational therapy .
According to DOCS, she is doing well. Her mother said: "My daughter is a dear little thing but so frightened. For a child who took so long to attach and experience being loved and wanted, this is a tragedy. It is beyond my endurance."