Young girl caring for disabled older sister

October 22, 2007 at 11:01 am | Posted in Articles | Leave a comment

 This fairly standard case study of a family looking after one of their own who has a disability featured in the Herald Sun on Saturday. 

October 20, 2007 12:00am

TWELVE-year-old Elisha Catlow is speaking to an audience of several hundred adults at Hawthorn Town Hall this afternoon. She won’t be nervous. She has done a power of speaking over the years, and the subject is close to her heart. The year 6 student from Balwyn will be talking about her sister, Amanda. The bond between them is more than blood — Elisha regularly takes care of Amanda, 19, who is significantly disabled with tuberous sclerosis, and is totally dependent on others for all her needs. Their mother, Cathy, is Amanda’s primary carer, but when Cathy had gastro last month, at the same time as dad Michael had shingles, Elisha took over. She knows first-hand how the shortage of respite care for people with disabilities puts stress on their families. That is why she volunteered to tell her story at today’s disability forum run by Yooralla as part of Carers Week. Elisha says people and policy-makers need to understand how difficult it is for the families of disabled people. The Catlow family are typical of what Yooralla chief executive Bryan Woodforde describes as the “increasingly unrealistic expectation” placed on family carers. “There is an extraordinary crisis in carers that nobody wants to talk about,” Woodforde says. “We currently have the greatest generation of carers in history, providing services with an economic value of more than $30 billion, but the world is changing and future generations won’t be in a position to provide that level of service. “When the current generation of carers is no longer there, who is going to be paid to do the role, and how?” Elisha Catlow isn’t new to the role of carer or advocate. As social services captain at Strathcona Baptist Girls Grammar, she recently raised more than $1000 for Interchange, a non-profit organisation that helps the families of children with disabilities. When she addressed an Essendon Football Club coterie function at Telstra Dome, $20,000 was raised for Very Special Kids. She has strong opinions, too: “I get mad when people park in disabled spots.” Mostly, though, Elisha is a little girl who likes playing netball and piano, and adores her older sister. “When I come into the room, her eyes light up. I love it,” she says. “We do the little things — hugs, stuff like that. “Her new thing is that she leans out for kisses. She has started pursing her lips.” Amanda cannot speak, and has the intellectual development of an eight-month-old baby. While Elisha helps with daily tasks, Cathy is full-time carer responsible for all her needs, including feeding, bathing, dressing, turning and toileting Amanda. Michael Catlow works long hours in the recruitment industry to keep the family together. The Catlows have purpose-built their house so it is suitable for Amanda, and for ambulance trolleys, and have installed closed circuit TV so they can watch Amanda in her bedroom. They say the personal and financial pressure on them has become even greater since Amanda reached 18, and no longer qualifies for respite care given to disabled children. Now they must rely on three hours of in-home assistance three nights a week through Boroondara Council, which Cathy says barely allows her time to take Elisha to netball. “It’s ironic that we are still the parents of a child with a disability, and our daughter has the intellect and support needs of a baby, but because her actual age is over 18 we’ve been stripped of most of the services we could previously access,” she says. The Catlows get support from Yooralla, through its Pendle St Respite House, but getting predictable respite care has become increasingly difficult. “We long to have a break, more than just a few days — something like what people call a holiday,” says Cathy. Michael says the family are but one of many struggling under the lack of respite opportunities for families of adults with a disability. “Governments say they have no money,” he says. “Then they go and spend $50 million on the Commonwealth Games opening ceremony and another $50 million on the closing ceremony. “The Government says it wants care to be more home-based, but the resources to do that have actually become less.” Cathy says: “I’m 51 and still changing nappies. “I feel like I haven’t had a life for 19 years. “At some point, I feel we’re going to break down. We’re not going to last.” Elisha says she tries not to think about the future. “I never want Amanda to go into a home,” she says. “If that happened, I’d have to go with her.”

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