Monday 3rd March 2014
If the O’Farrell Government took just a fraction of the responsibility that the families of disabled people must take, it may reconsider handing over disability support services to non-government organisations.
Imagine taking a 63-kilogram, 68-year-old child through a supermarket.
He won’t take no for an answer, reacting angrily and physically at the very word. He doesn’t walk on his own, instead hanging all his weight off you as you walk. You must be watchful that he doesn’t rush up to other shoppers’ children and try to kiss them.
This is what a shopping expedition is like for the family of Daryl Batcheldor. They do it, and much more, so he can live the best possible life in a settled, understanding and loving environment.
For the past 44 years Daryl has lived at Kanangra residential centre at Morisset. He’s a prankster – he’s flooded bathrooms countless times – and as a joke he’ll drop other residents’ clothes in the bath water. He can be physically rough, as can many of his fellow residents, and he doesn’t sleep through the night. He sees a psychiatrist twice a week to monitor how effectively his prescribed drugs are performing, as his moods change constantly.
He has a long police rap sheet recording pushing, scratching and biting incidents in Kanangra that, by law, must be reported.
Daryl was born with cerebral palsy and brain damage that affected him physically and mentally.
“You could tell from the start there was something wrong with him,” his sister Lynne Warner said.
He was a behavioural and management nightmare, requiring care from grandparents as well as his parents. He refused to eat food offered him, preferring to eat raw meat with the dog and veggies while perched on a coal heap outside; that’s where he was comfortable.
Daryl’s father died when he was seven, having begged his wife to promise the impossible, not to put his son into an institution.
“When he was eight my family had to make a heart wrenching decision to place him in full time care,” Lynne said. “We have always visited him regularly and attended social events with him and we still take him on outings and send him on holidays.
“We used to take him home and we had my grandmother, my mother’s sister, my husband and my aunt’s husband, all with different jobs. It broke our hearts when we couldn’t manage him to do this with us anymore.”
Daryl has no control over his emotions and the family knows to never say the word “no” to him.
“One day my grandmother offered him a drink and it wasn’t the one he usually had so she said ‘no take this one.’ Before the words were out of her mouth he got the can and rammed it into her arm. If we want to say ‘no’ we say ‘yes, shortly’, ‘next time’ or ‘in a moment’.”
Daryl’s future is uncertain following a state government decision to end all its disability support services by 2018, handing them to non-government organisations (NGOs). It plans to close and redevelop Kanangra and other centres next year, promising “they will be replaced with contemporary accommodation in the community which will be designed to provide a home-like environment, with more privacy, flexibility in daily living and opportunities for increased participation in the local community”.
“Politicians have no idea what they’re dealing with,” Lynne said. “Daryl has a family and community right now at Kanangra with people who understand his needs, his personality and his social and medical issues.”
Because of financial constraints and lack of experience in the disabilities field, the NGO sector may be unable to take on all the services currently delivered by government.
Lynne has asked Disability Services Minister John Ajaka to spend a day at Kanangra to gain an understanding of the high needs of residents. He hasn’t responded.
Only 20% of Kanangra residents have families to represent them.
“Eighty per cent will not have a voice over their future needs,” Lynne said. “These are Daryl’s friends and a concern to our family as they will probably be placed apart under the latest government schemes, and the nursing staff that have a pivotal role in their care will be dispersed.
“Last week I went to the funeral directors to organise a funeral for Daryl,” Lynne said. “It’s hard enough to do that for someone who’s dead, to do it for someone alive is awful. But I have to get organised so there’s less for my children to do if something goes wrong. My greatest fear is that something will happen to me before he goes.”
While her own children love Daryl and care about what happens to him she does not want them to take responsibility for him.
“I made a decision the buck stops with me. We’ve had three generations of women taking responsibility – my grandmother, my mother, my mother’s sister and me. I’m determined this will not go on to my children. Enough is enough.
“He is my only brother, he is my only sibling, I just love him and my family will fight to keep him where he is safe and well cared for, a situation all vulnerable and profoundly disabled people justly deserve.”