Families Push for Autism Funds

By Emma Graney, Leader-Post November 28, 2011

Levi Tetlock is a nine-year-old boy who likes playing with toy planes, watching films and eating popcorn.

He’s skinny for his age and his thick-lashed brown eyes are usually focused on the wall, small clues to the fact he has autism.

Until a few months ago, he didn’t really talk and simple interactions were beyond his grasp. But in September, he started Applied Behaviour Analysis (ABA) – an intensive, one-on-one form of therapy.

Now, when his mother asks him questions in the living room of their Regina home, he giggles as he answers; he knows his name, age, address, names of his family members, where he went on vacation.

At $40 per hour, though, the therapy adds up and his parents, Wayne and Jeanne Tetlock, can’t afford to send him for more than eight hours a week.

“He learns 99 per cent more there than he does in school, but who am I kidding?” Jeanne says, shrugging her shoulders. “We won’t be able to afford to keep him there.

“Like every parent, we want our child to grow up and be the best he can be, but right now he can’t do that.

“We just want the government to help pay for this therapy. It helps him so much. It’s amazing.”

Currently the province provides $25,000 each year for ABA therapy for kids aged three to five, then families receive $1,200 each year for respite care.

When he’s not at ABA, Levi is educated in a school classroom with seven other autistic children and two teachers, but Wayne says the kids learn bad habits from one another rather than developing social and communication skills.

The Tetlocks don’t blame the teachers, saying the funding isn’t there to provide the support needed by their son and other children with autism.

“These guys learn visually, not by being told,” Wayne explains. “He’s got a summer camp he goes to, and he learns more in that four or five weeks over summer than he does all year at school. It’s frustrating.”

Lisa Simmermon also has an autistic son, Hans.

When he was young, she educated herself in ABA and used it to teach Hans in a home school situation.

Hans is now 22 and has almost completed high school with a 94 per cent average – something Lisa says proves how successful the therapy can be.

“It was the difference between him being able to learn and not being able to learn,” she says.

“It’s been incredibly successful for him. We’re hoping at some point he’ll be able to contract out accounting services.”

Lisa says parents have been asking the provincial government for ABA-specific funding for years, but to no avail.

“They say it’s a funding issue, but other provinces say, ‘We know it’s expensive but it’s better down the road,’ because people who have this treatment are more able and need less support,” she says.

“I just don’t know why, after so many years, we’re still at the point other provinces were at a decade ago.”

Linda Restau, director of continuing care and rehabilitation with the Saskatchewan health ministry, says no evidence has been presented stating ABA is actually the best kind of therapy. Instead, she says, treatment in this province uses a variety of techniques – including some parts of ABA.

“We have the Canadian Agency of Drug and Technology provide unbiased evidence to us to support decision making in all areas of health care, and their research concluded that there isn’t sufficient evidence for the superiority of any particular evidence-support intervention strategy,” she says.

The problem, say Lisa and the Tetlocks, is that evidence actually does support the use of ABA and, if it wasn’t an accepted standard of care for autistic children, other provinces and states in the U.S. would not have embraced it the way they have.

In British Columbia, for instance, there is $22,000 available per year for each child under six, and $6,000 per year for ages six to 18.

In Ontario, ABA is offered to children and youth up to their 18th birthday, depending on their level of need. In Alberta, the Family Support for Children with Disabilities program provides funding which can be used for ABA or other therapies. Funding ranges between families depending on their assessed need and what supports and resources they may already have available to them. Manitoba also has a comprehensive program, offering training for new practitioners and three streams of ABA support for children with autism, as well as other supports such as respite or home tutoring support.

With so many other provinces using ABA, they ask, why doesn’t Saskatchewan?

“We’re looking at a broader approach to the issue rather than focusing on one technique,” Restau says, “and trying to incorporate a variety of techniques.

“We know there’s always more that could be done, and to that end the human services ministries are always working together to determine what additional supports may be required.”

But Levi’s parents don’t think that’s good enough.

“Without ABA, how will he ever be able to get a job? Pay taxes? He’ll be a burden on society,” Wayne says.

“If you look at the long-term, it does help government to invest money in this now, or they’ll pay more in the long run.

“These kids are part of our future.”

egraney@leaderpost.com

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