Families ‘devastated’ by autism services changes
Children 5 and older are no longer eligible for treatment funded by province
Janet Asher waited years for this day to arrive. Friday was her son Benjamin’s first session of intensive autism therapy funded by the province, which she hoped would change his life. The road had been l ong — 12 months to get an assessment and autism diagnosis, followed by almost two more years on the wait list for a treatment spot through Surrey Place Centre in Toronto.
But when it finally arrived, the day was marred by heartbreak and confusion for the family. Earlier this week, Ontario announced that as of May 1 it will no longer provide intensive behavioural intervention (IBI) to children 5 and older. Benjamin turns 5 two weeks later. “This is devastating,” says Asher, whose son is one of about 2,200 children who will be removed from the wait list over the next two years as a result of the new age criterion.
His funding, initially expected to last 18 to 24 months, may end soon after it started. But “we chose to forge ahead with therapy today despite not having an answer since we have the team set up and Benjamin can’t wait any longer,” Asher said Friday.
The changes, met by shock and outrage from parents who had been waiting and counting on treatment for their children — for years in many cases — are part of an overhaul announced Tuesday by the Ministry of Children and Youth Services.
The ministry said it will invest $333 million in autism over the next five years and is realigning services to cut wait times and ensure treatments are delivered to children “in the appropriate developmental window.”
For IBI, it now considers that window to be age 2 to 4, based on recommendations of an expert clinical panel appointed three years ago.
But the reality today is the average age of children receiving treatment in Ontario is over 6, and children wait an average of two years, and up to four in some regions, to get treatment.
Alarmed parents and advocates say the changes are being made on the backs of children suddenly deemed too old and who will end up falling through the cracks.
“It was a huge blindside for everybody,” says Kristen Ellison of Cobourg, whose 5-year-old son, Carter, had been at the top of the waiting list through Kinark Child and Family Services and was supposed to begin IBI this month after waiting three years.
Ellison is part of a group that launched an online petition that quickly attracted thousands of supporters, a new Facebook page Alliance Against the Ontario Autism Program and the Twitter hashtag #autismdoesntendat5.
Parents have been flooding the office of NDP children’s services critic Monique Taylor, who plans a news conference next week. And they’re writing letters to MPPs, the minister and the premier.
Irwin Elman, provincial advocate for children and youth, has also expressed concern and says he has asked the ministry to brief him on the impact of the changes on vulnerable children.
“If we’re going to take something away from a young person, you always have something to replace it before you take it away,” he said in an interview.
Families with children taken off wait lists will receive $8,000 in funding for other supports and services, though they are quick to point out that this is the equivalent of barely two months’ private therapy, which costs roughly $50,000 a year.
The plan is to shift more supports to school settings and boost the existing applied behaviour analysis program, which is much less intensive, at two to four hours a week, and focuses on teaching specific skills.
But Elman said parents fear there will be a gap between promises and reality.
“There’s a concern that their kids are not going to be well-served. . . . They’re not satisfied the public school system has the ability to deliver what their children need,” he said.
“My hope is the government will not make a move to change the system without ensuring that children get what they need when they need it.”
But change based on the latest evi- dence was necessary to tackle wait lists and provide more effective service, said Tracy MacCharles, minister of children and youth services.
“The cost of inaction is too high,” she said in an interview.
If the province had done nothing, rising autism rates — now amounting to one in 68 children — combined with earlier diagnosis would have pushed wait lists from an average of two years to five years, she said.
Asher said if she and her husband had known this would happen two years ago, they would have scrambled, remortgaged and done whatever they could to try and get full-time therapy as soon as possible.
“I feel incredibly guilty,” she said. “We made major life decisions based on a government promise that will now go unfulfilled.”