Father Fights To Avoid “Autism Abyss” As Desperate Parents Gather At Queen’s Park
Posted April 2, 2009 12:00 pm.
This article is more than 5 years old.
It is an ongoing story without an ending: parents facing the agonizing choice of bankruptcy or saving their children’s future.
And in the end, neither option often works.
Welcome to the world inhabited by families of an autistic child, a limbo land where all the choices seem to be wrong. The disorder leaves kids unable to communicate with the world and can lead to disruptive and sometimes destructive behaviour as they struggle to make their point in a society that can’t understand them.
It’s terrible enough when a mom and dad are given the devastating diagnosis. But it’s worse when they discover that the therapy their children require to have even a chance at a normal life costs at least $60,000 a year – and it has to be kept up for decades or the child’s progress slips back.
It’s a backbreaking amount and in most cases, the Ontario government won’t pay for it after age six, leaving families to choose between providing a future for their kids or going broke.
Paul Cerutti has a double burden. Both of his children, six-year-old twins Mackenzie and Delaney, have autism. Despite that, he’s one of the lucky ones – he managed to get the funding to give them the intensive behavioural intervention or IBI therapy they need.
But that luck was in danger of running out, because Delaney (top left) was set to lose her treatment. “The Ministry is claiming that Delaney is not learning fast enough for their standards,” he complains.
Many parents say their kids are stuck on waiting lists, often for years, as they fall farther and farther into the autism abyss. They gathered at Queen’s Park on Thursday – World Autism Day – to air their grievances, which have been building for years.
“The government is letting all these children fall of a cliff into a future of no independence, no dignity, and no hope,” warns Sharon Aschaiek, the mother of an autistic son.
Cerutti is vowing he won’t let that happen to his daughter. “I can say for us the stress already is really high, but to add this on top is piling it on. It gets to be unbearable at times,” he confesses.
In the end, he could breathe easier. Late Thursday, the McGunity government decided to restore the funding after the issue was brought up by the NDP in the Legislature.
It’s a small victory in a much larger war. The Ministry for Children and Youth Services says the Liberals have tripled such funding in the last five years.
But parents claim the government has broken its promise to them and insist it’s been too little, too long and for too many, too late.
What having an autistic child does to a family
