The Advertiser, Edition 1 - State - SAT 23 OCT 2004, Page 045
By CRAIG BILDSTIEN
PARENTS and carers of South Australians with disabilities have been urged to fight for a role in the formulation of government policy. Women's Health Ministerial Advisory Committee chair Jocelyn Auer says there is a compelling case for carers to be heard. "Too often, people are expected to disappear at home, never to be seen again,'' she said.
"Carers have rights and deserve to be supported. They must articulate the full range of tasks they undertake and spell out what is possible and what's not.''
Ms Auer's comments came as a group of angry parents of children with intellectual disabilities launched a $100,000 print, radio and television campaign challenging the State Government on disability funding.
Newspaper advertising will begin on Monday.
A group of parents met at St Ann's Special School at Marion yesterday to finalise the first stage of their campaign. While Ms Auer admitted the task of influencing government service providers could be tricky, she said carers "need to be in the loop on decision-making''.
"Carers need a voice . . . they cannot remain on the periphery,'' she said.
"We have a responsibility to make our health and community welfare systems work better. I encourage carers to actively take up their issues with the department.''
Dr Tori Wade, medical director of the SA Division of General Practice, said the role of carers was not valued highly enough by governments. "They do not always get the respect and attention they deserve if they approach health and human services,'' she said.
"Yet carers are what stops the health and human services system from falling apart. It is sad to see them struggling as hard as they can and not always winning the battle.'' Dr Wade said carers needed to receive support to prevent them "burning out''.
"We need a culture within human services that values, informs and includes carers,'' she said. "There are many systemic barriers that need to be overcome.''
Joy worth the angst
By CRAIG BILDSTIEN
SUSANNAH Entwistle has twice put her mother Margie into hospital.
She flings everything from dolls to ghetto-blasters around the house.
When she kisses family and friends, she bites - deep enough to draw blood.
The 23-year-old also finds it amusing to claw and pull other people's hair, tear documents into confetti and chew through electrical cords.
At meal times, once she has finished eating, she often throws her plates and any remaining food scraps at the family dogs.
Nevertheless, her father John says the joy Susannah gives him and his wife "far outweighs any angst resulting from her care''.
Susannah, the second of four daughters to Mr and Mrs Entwistle, is severely intellectually disabled.
Her mother, a nurse, has been her full-time carer since her birth. Her dad, a GP at Hahndorf, says the main difficulties with care relate "to the lack of funding, appropriate services and information available''.
Dr Entwistle says service providers tend to assume parents had not come to terms with their child's disability. "It never seemed to relate to unmet need or service failure or lack of support,'' he said.
He finds it distressing many doctors don't understand the needs of the disabled or their families.
The Entwistles worry about what will become of Susannah when they die.
"We worry that she will end up in accommodation with only people with similar behaviour . . . she deserves better.''
Posted on 23-10-2004
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