‘Massive change’ needed in autism support services, minister says
Province can’t afford ‘top-heavy’ system that leaves families few options, Coteau tells Star
The provincial minister in charge of children’s autism services wants families to know he’s listening.
The system needs “massive change,” said Michael Coteau, minister of children and youth services. And the new Ontario autism program launching in June will reflect that, he said, by providing more children with uninterrupted treatment and more families with direct funding options to pay for services they arrange on their own.
In a sit-down interview last week at his constituency office in Don Mills, Coteau said he is looking closely at the nine regional treatment centres that oversee autism services to determine how much of every tax dollar goes toward front-line supports for children. These are priorities he has heard raised repeatedly by families and experts in the field during his four months as minister, he said.
“It’s going to be tough transforming a system overnight,” Coteau said. “This is what I’ve been mandated to do by the premier. It’s what’s required and we’re going to get it done.”
It was a baptism by fire for Coteau when he was shuffled into his new portfolio in June amid an uproar over the autism program introduced by predecessor Tracy MacCharles.
MacCharles announced an investment of $330 million over five years in autism services. But in an effort to eliminate wait lists, the plan cut off intensive treatment for children 5 and older, affecting 3,600 kids expected to be removed from wait lists or transitioned out of treatment, though many had waited years to get it.
After months of protests, Coteau replaced MacCharles and amended the plan. He announced a further $200 million and promised successive payments of $10,000 for each child taken off wait lists to cover the cost of private treatment until the new program is ready.
He also shortened the timeline by a year, promising the revamped plan would provide treatment for all children who need it by 2017 instead of 2018.
Coteau said the goal of cutting wait lists and creating more services for children of all ages made sense. But imposing the age cap on intensive behavioural intervention (IBI) without an alternative “was not the right decision.”
“It was a very frustrating, challenging time for parents. When you lose hope for your child, it’s devastating.”
Jessica Perusco of Mississauga was one of those parents. Her daughter Lucia turned 5 in July, two months after starting IBI. The family is still uncertain how long she will continue to receive it and if Lucia will be able to get into the new alternative program next year.
“I don’t believe government anymore,” Perusco said. When it comes to promises of better autism services, “I’ll believe it when I see it.”
Coteau has an advisory committee of parents, clinical experts and educators to provide guidance as the program is put into place. The committee does not include members on the autism spectrum. When asked, Coteau said he would like to include the perspective of people “who have gone through the system and can provide any type of feedback or insight.”
As part of the current overhaul, Coteau said his implementation team is reviewing everything from how children are assessed to salaries and administrative costs at the children’s regional centres.
“What we can’t afford is a system that’s top-heavy and low-resourced at the bottom,” he said. “I don’t know those numbers yet, but I’ve asked for them.”
Parents have long complained about red tape, miscommunication and inconsistencies when dealing with the regional centres.
The minister said he has heard from families who say they’ve been pressured to choose services run by those centres instead of the direct funding option they prefer, which would allow them to arrange and pay for their own therapist and treatment schedule.
Many say they’ve been told by the centres that choosing direct funding will mean waiting at least a year longer for treatment, he said.
“To me, that’s unacceptable. We need to hold systems accountable,” he said. “When you have so many people complaining about a particular system, the status quo cannot be maintained.”
The province has said a central part of the new autism program will be applied behaviour analysis (ABA) for children of all ages based on an assessment that determines the intensity and duration they need.
But many families and specialists working in the field are skeptical about whether it will be adequate for the kids who don’t qualify for IBI because of their age or because they are considered too severe or highfunctioning to benefit.
The current ABA program provides blocks of treatment for only two to four hours a week over the course of a few months, versus 20 hours or more for IBI, which typically lasts 18 months to two years.
The province has not disclosed details of how the new ABA program will work. But Coteau acknowledged the importance of continuity.
“If we’ve got that one shot to take a young person and set them up so they can be successful, there can’t be interruptions,” he said. “You cannot have them not receiving the full delivery of services during that time period.”
Critics such as Irwin Elman, Ontario children’s advocate, say that what’s needed is a government-wide strategy that includes the health and education ministries, to collectively ensure children with autism get the help they need when they need it throughout early childhood and the school years.
The shortage of school supports is one of the most pressing concerns raised by both parents and educators.
Coteau said he is in discussions with Education Minister Mitzie Hunter about how to address the shortfall, train more educators in using ABA principles and help kids make the transition from treatment into the classroom.
“My job now is to deliver a program that will be considered the best program in this country,” he said. “That’s my goal.”