By Pauline Tam, The Ottawa Citizen November 22, 2010
It has been more than two years since five-year-old Jackson Halden was diagnosed with autism and put on a waiting list for provincially funded therapy.
In that time, his parents, like many others in the same situation, have opted to pay for the treatment themselves. Knowing that the earlier children start therapy, the better, Dan Halden and Jude Pattenden maxed out their credit cards and relied on donations from relatives.
The couple has spent $65,000 on intensive behavioural intervention, or IBI, for their son.
Having already scaled back the number of treatment hours Jackson receives, Halden and Pattenden wonder how much longer they can keep paying, given that they have two other young boys to raise.
“We’re pretty much tapped out now,” said Dan.
Since Dalton McGuinty’s Liberals came to office in 2003, spending on autism services has increased four-fold to $165 million a year.
Yet the number of children waiting for IBI (1,609) continues to soar, outpacing those actually receiving funding (1,446).
In Eastern Ontario, 82 children are currently being funded, while 142 wait.
The paradox is due, in part, to the government’s reluctant decision in 2005 to stop cutting off therapy once a child turns six.
The move — spurred on by a class-action lawsuit — has dramatically increased the pool of eligible children.
So have better awareness and diagnosis of the developmental disorder, which causes serious language, learning and social disabilities in one of every 100 children.
The resulting pressures mean families waiting for government-funded therapy can face delays of up to five years, said Sharon Aschaiek, founder of Autism Resolution Ontario, a Toronto-based advocacy group.
To pay for IBI themselves while they wait, some families are forced to remortgage their homes, while others are driven to bankruptcy, according to a 2007 federal report on autism tabled by Senators Art Eggleton and Dr. Wilbert Keon.
Parents want their children to get IBI as soon as a diagnosis is made because mounting research shows children with autism can improve significantly with early intervention.
In the meantime, many families already receiving IBI funding have seen their children cut off from the treatment in apparently arbitrary ways, said Aschaiek.
Some children are discharged after only six months, ostensibly because they’re progessing too fast or too slowly. As a result, critics have questioned the criteria used to determine a child’s continued eligibility.
“We have a lot of concerns about the process for discharge,” said Aschaiek, whose four-year-old son is in the provincial program.
Her group is calling on the McGuinty government to consolidate all of its autism spending on IBI.
Currently, the bulk of autism spending ($114.5 million) goes to IBI with the remaining $50.5 million going to supports for children in school, and to summer camps and respite care. Aschaiek said using the full $165 million to fund IBI would allow every child on the waiting list to qualify for up to 25 hours a week of therapy.
Children and Youth Services Minister Laurel Broten said she does not support the idea. “We have heard very strongly from many parents, from many experts, who say that we need to broaden the type of support that is available to children.”
Under the provincial program, IBI services are provided by nine regional centres, including the Ottawa Child-ren’s Treatment Centre. Parents also have the option of accepting lump-sum provincial payments and shopping around for a private provider.
The Halden family is leaning in that direction — when and if Jackson qualifies for funding.
Given that he already has a provider, moving him to the government-run program would be disruptive for a boy who thrives on familiarity and routine, said Jackson’s mother Jude Pattenden. “We worry that he’s going to regress.”‘
Indeed, Jackson has come a long way since he stopped talking at age two and became increasingly delayed cognitively and socially.
Unlike his twin brother, Ryan, Jackson never responded when he was called by name. And while Ryan learned to tell his parents when he was hungry or had to go to the bathroom, Jackson became profoundly low-functioning, said his mother. “You have a lot to compare him with when you have twins.”
But after two years of therapy, Jackson appeared just as high-energy as his two brothers as they cavorted around the family home recently. He can communicate in two- or three-word sentences and express some of his needs, but has yet to carry on a conversation. “It’s a huge victory when Jack says, ‘Juice, please’,” said his father. “He’s starting to show signs of development, and that’s all because of the IBI.”
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