They're furious about Ontario's changes to services and funding for their kids.
Tara Ranger has a lot on her plate. Her son, who is six years old, has autism. His needs, however, are milder than other children, and as a result, he was discharged from a government-run therapy program, called intensive behavioural intervention, or IBI therapy. Service providers said he’d do better in a school setting.
Ranger then applied for government funding so she could receive access to the therapy through a private provider. But, thanks to new Ontario legislation, she will soon lose that funding—all because her son has reached the age threshold.
On May 5, busloads of parents just like Ranger, equipped with homemade banners, posters, and signs, will flood the front lawn of Queen’s Park. They are protesting the provincial government’s changes to autism services in Ontario, which will exclude children over the age of five from receiving much sought-after treatment.
The move, which the Liberals say will cut down wait times for the therapy, will oust more than 3,500 children from the wait list. There is currently a two- to four-year wait list for IBI therapy.
Here’s what you need to know about the legislative changes.
Why is the government changing this funding?
When the provincial budget was announced earlier this year, the Ontario government mentioned increased support for autism services.
In March, the province announced $333 million in extra support; however, there would be a change to the way service is delivered. Children over five years old would not longer be eligible for IBI therapy, and in turn, would be encouraged to seek a less intensive treatment, called applied behavioural analysis, or ABA therapy.
What is the difference between IBI and ABA therapy?
The difference, some parents say, is everything.
IBI therapy provides one-on-one interaction for 20 hours a week. The program focuses on multiple goals at once—everything from using the washroom, proper social cues, and eye contact.
ABA therapy, on the other hand, only offers a few hours a week of programming for the duration of 20 weeks.
What does this mean for children over five on the IBI wait list?
— Josie Chaves (@AutismSupers) April 23, 2016
These children will be kicked off the list. Those currently receiving IBI therapy who are over five will be transitioned out of the program. More than 85 per cent of children who are currently on the list for IBI therapy are over the age of five.
Families with children over five will be given $8,000 to privately seek service. IBI therapy costs about anywhere between $3,000 and $5,000 per month.
Monique Taylor, the Ontario NDP critic for child and youth services, says that this will create a lost generation of children who will not receive the necessary intensive treatment that they need.
Why age five?
According to a report by an independent committee advising the provincial government on autism services, IBI therapy works most effectively on children under the age of five.
The average age of diagnosis of autism in Ontario, however, is three years old. And with a years-long waiting list, many children won’t receive any IBI treatment.
James Porter, a psychologist specializing in IBI therapy, says that the government misinterpreted the advising committee’s report by assuming that IBI has no value for children over the age of five. “The expert panel didn’t make that recommendation,” he says, explaining that the report states that early intervention and early treatment are key.
Treatment, Porter adds, is often most beneficial at an early age—it does not cease to work after a certain point. “Nowhere in their report does it say that children over the age of five don’t benefit from IBI,” he says. “The science doesn’t support the age five cut off.”
— Scott Corbett (@ScottCorb) April 23, 2016
Are there any solutions?
Porter says that the government needs to give parents the money to seek out the services that their child needs. This is currently available, called the direct funding option, but will be discontinued for parents of children over five.
— Kelly C (@KellyACimek) April 23, 2016
According to the auditor general’s report on autism services in Ontario [PDF], it costs the government 66 per cent more to provide therapy than it does for parents to access these services privately.
“It’s not even just the financial aspects,” said Porter. “In my experience the qualifications for private providers is much higher,” he said, adding that in addition, “parents are more involved and engaged and have more of a voice in what goes on.”
Ranger is still unsure what she’ll do. “I’ll be forced to just work through on my own, and sometimes I don’t know how to handle it,” she says. “I’m not happy at all.”