Families with autistic children often look beyond government-funded programs
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WATERLOO REGION — As her twin boys were growing, Caitlyn Barton noticed Finn lagged behind his brother Callum.
At first the Kitchener mother thought Callum was developing quickly for a two-year-old, but then she began to worry it was Finn who was struggling.
“It was really apparent that he wasn’t speaking,” Barton said. “He couldn’t say his own name.”
Finn only echoed words his parents Caitlyn and Paul Barton or others said, rather than saying words on his own.
“Callum was blossoming with words,” she said.
Eager to work on Finn’s language skills, his parents signed him up for speech therapy at a private clinic in Waterloo, blueballoon Health Services. Soon it became obvious the issues were beyond just speech and Finn went to a pediatrician for testing who diagnosed him as on the autism spectrum.
Soon Finn changed to behavioural therapy while waiting eight months for testing to see if he was eligible for provincially funded therapy. Determined to be a mild case this past spring, he was not approved for government programs and told to come back for a reassessment in a year.
Finn’s parents didn’t want to wait and instead are paying out of pocket, even though that means putting savings on hold.
“Everyone says the early intervention is key and the thought of waiting to help my child is appalling, frankly,” Barton said.
Children with autism in Ontario can wait for years for government-funded therapy. Provincial funding has increased — quadrupled since 2003 to $186 million — cut-off ages dropped and more services added, but the need has grown, too.
The estimated prevalence of autism was increased by the Centers for Disease Control and Prevention in the United States earlier this year to one in 88 children from one in 110.
Children and youth receiving intensive behavioural intervention therapy, commonly called IBI, in Ontario as of the end of June reached just over 1,400. Another 1,700 were on the wait list. The number getting the therapy, which typically involves between 20 and 40 hours a week one-on-one, has almost tripled since 2003, according to Ministry of Children and Youth Services spokesperson.
In the central west region, which includes this area, 326 were getting the intense therapy and another 300 waiting.
Those on the wait list are often getting other provincially funded autism support, such as applied behavioural analysis services introduced last year to help 8,000 children a year develop skills in behaviour management, communication, daily living and social interactions.
As of the end of June, 2,765 children were receiving the services in Ontario — about half the number waiting. Since children are in that program for two to six months, the wait is expected to be relatively short.
Other provincially funded services include respite care, summer camps and transition support for adolescents.
Recognizing that wait lists can be long for government-funded programs, Autism Services Waterloo Region aims to help parents find what else is offered.
“We really want to provide families with a comprehensive view of what is available to them,” said project co-ordinator Esther Rhee. “We don’t just focus on the government-provided programs.”
Autism Services Waterloo Region ( www.autismspectrumconnection.com) was formed by a group families and agencies to support families and promote inclusion in the community through guidance, events, groups and workshops.
“We really do try and take the weight off families,” Rhee said.
They develop a customized plan for each family that draws on support and services offered in the community as well as funding opportunities to alleviate costs, such as home renovations to make it safer for an autistic child.
Guiding families to resources is important because the wait for a diagnosis or therapy can set them back.
“A lot of times that prevents families from accessing services,” Rhee said.
Barton isn’t holding out much hope for government-funded help, especially since they’re seeing tremendous progress in Finn, who just turned four.
“He’s doing wonderfully,” she said.
Finn also goes to KidsAbility every afternoon for junior kindergarten, where he gets more of the specialized support to nurture his development. At blueballoon he has been getting 10 hours a week, up to 15 during the summer.
He’s speaking full sentences, knows the alphabet and counts well. He can sit and focus on an activity and follow three-direction steps.
His parents are hopeful the therapy will make a big difference in his life, maybe even being in regular classes.
For now, they’re happy with an easier life at home. Before Finn was prone to outbursts due to the frustration of not being able to express what he wanted.
“The frustration level has just gone down,” Barton said. “So his true personality can come out. It’s been really wonderful.”