CRIES of the CARE WORN
New grants and support groups will ease the load on parents of disabled children. But critics say carers of older children are overlooked, reports Lynnette Hoffman
COMPARED to many parents of children with disabilities, Andrea Day counts herself rather fortunate. Her daughter, Sofia, was born with Down syndrome and has experienced many of the physical problems that go with it, such as a weakened immune system that makes her more susceptible to sickness, and breathing difficulties and congestion linked to the narrower passageways in her ears, nose and throat.
But all in all, she’s healthier than many other children with her condition. She doesn’t have complications such as heart problems, which are common and often require surgery.
Sofia is a ‘‘ vivacious and energetic’’ threeyear-old, and Day’s family and friends have gone out of their way to be helpful, stopping by to assist with ironing and cooking and other practicalities, and being supportive wherever they can.
Yet notwithstanding all that, Day still remembers the enormous sense of relief she felt the day she took then nine-month-old Sofia to a play group where she unexpectedly met another mother who had a daughter the same age with Down syndrome.
‘‘ Even though I had all that support I still felt isolated at times,’’ Day says. ‘‘ It was such a relief to have someone who had an immediate understanding. She was in exactly the same situation as me and we could speak the same shorthand. I didn’t have to explain things.’’
Parents of children with disabilities and other chronic health problems often find themselves socially isolated and at greater risk of depression and marriage breakdowns. And the pressures aren’t confined to those with small children.
Late last month the Australian Association for Families of Children with a Disability published an open letter to the Prime Minister on its website, in which it outlined several ‘‘ unmet needs’’ — mainly linked to a lack of long-term accommodation and support for adults with disabilities.
Three examples cited in the letter, from a single three-week period about 18 months ago, included the cases of three families in Victoria who found the pressures of looking after their disabled adult children so intense that they took ‘‘ the enormously difficult decision’’ not to take them back home after checking them into temporary respite care. Two of the children, aged 17, and 32, had severe intellectual disabilities and autism, while the third, aged 24, had multiple intellectual and physical disabilities.
AAFCD chief executive Michael Gourlay said in the letter that the state Government was obliged to assume responsibility for their care, which it did by turning the respite centre they had been in into long-term accommodation — reducing the number of respite beds available to ease the load on other families.
The 17 and 32-year-olds remain in public accommodation, while the 24-year-old has since returned to spend half his time with his family.
The federal Government acknowledges that such parents need help. This week the government announced a five-year, $1.8 billion assistance package for disabled Australians and their families and carers to address some of these issues. From Sunday, families with a disabled child under 16 will receive a $1000 tax-free payment for goods and services to improve mobility and quality of life. In a statement, the Prime Minister said the Government was aware that ‘‘ the level of unmet need for supported accommodation and respite care is causing distress and worry for many carers’’.
The announcement comes as another initiative — a $9 million federally funded move to set up more than 300 specialised support groups for parents with children under school age — is getting going.
The first seven ‘‘ MyTime’’ support groups, for families eligible for the Carer Allowance for children, were set up in April in Victoria, Queensland and Tasmania. Eighty more were launched this month in Western Australia, South Australia and NSW, with the roll-out continuing through 2010.
While various support groups already exist around Australia on an ad-hoc basis, this is the Continued inside, page 17
Time out: Andrea Day, left, with neighbour Jacqueline Comensoli and her children. When Day found a play group for children with disabilities, she discovered much-needed support