Home > After year 12, Allegra may face nursing home
School-University Health Social USA
By Adele Horin
Eleven years ago, Allegra Milne-Salter’s uplifting story featured in the Herald. As a six-year-old with quadriplegic cerebral palsy, she had been accepted into mainstream classes at Kelso Public School, near Bathurst, as part of a new policy of inclusion.
"She needs to be in the world, and the world needs her, too," her mother Sally said at the time.
Now in year 12 at Kelso High School, Allegra is 17 and, like all "life skills" students, will finish school next month. With no alternatives, she will go into a nursing home.
"Allegra either graduates from high school to a nursing home," Ms Milne said, "or to life on a farm with two very tired parents who have not had a full night’s sleep in 18 years."
Last week, the Premier, Morris Iemma, vowed to make care for the disabled one of his three social policy priorities. But Allegra’s plight, typical of many with severe disabilities, shows the difficulty of his task, especially if the state budget is constrained by cost-cutting.
Allegra cannot talk, is fed by tube, and is totally dependent on others to meet all her needs. She must be turned over in bed several times a night to avoid pressure sores.
Her parents Sally, 52, and Dale, 55, are burnt out - and sick of politicians’ promises. One or both would have to give up their off-farm jobs to look after Allegra. The parents of children with severe disabilities find their lives are more curtailed when their children leave school.
"Kids spend at least 30 hours a week at school," said Robert White, chief executive officer of The Spastic Centre. "But once they leave school they get 18 hours a week maximum in (state-funded) post-school programs. This puts extra stress on the family."
Ms Milne has been told her daughter would qualify for 10 hours a week in a program, or 18 hours, if the family moved off their orchard into town. That is not the solution. "I don’t want to die exhausted looking after my daughter," Ms Milne said. "It’s not fair to expect parents to keep looking after people who require such a high level of care. My daughter should have a life of her own in accommodation that meets her needs."
Mr Iemma faces a huge need, with 7000 disabled people requiring supported accommodation, the NSW Council of Social Service says.
Allegra’s parents believe she will be able to attend courses from the nursing home, and still be part of the community. But the placement of young people in nursing homes is under examination by the Federal Government, which pays the bill.
’We fought hard for inclusive education," Ms Milne said.
"We never imagined in our wildest dreams Allegra would graduate from high school to a nursing home."
Forum posts
20 August 2010, 09:18, by sally salter
Five years later Allegra lives in her own home in Bathurst after a concerted co-operative effort by her family and the state government (DADHC)to work together to achieve this.
She has put on 15 kgs (from 39 to 55kgs) is rarely ill, swims twice a week and has just had her first photography exhibition. She is well and happy.
It is with heartfelt appreciation that we write to you to let everyone know the great outcome Allegra has achieved. We want to advocate strongly for all people with disabilities to have the opportunities they need to be happy and included in their local communities.
Sally and Dale Salter (Allegra’s very grateful parents).