Therapy for kids with severe autism: “I feel like we actually have a voice now”

Parents in Ontario who have children with autism are celebrating an important win. Michael Coteau, Minister of Children and Youth Services, announced today that the Kathleen Wynne government is officially backtracking on a controversial age limit that was imposed earlier this year on publicly funded intensive therapies for children with autism.

In March, when the ministry first announced plans for its new Ontario Autism Program, it also stated that parents of children ages five and older would no longer be eligible for government-funded intensive behavioural intervention (IBI), which provides 20 to 40 hours of behavioural therapy to children with severe autism each week. This change left many families facing the prospect of pulling their children from the program or paying out-of-pocket for intensive therapy, which costs thousands of dollars each month. Along with concerns over a proposed two-year transition period before the new program would start, the change sparked protests, letter-writing campaigns and social media opposition among parents and advocacy groups.

Coteau announced that the program would now be available for children and youth up to the age of 18. He said the government would be investing an additional $200 million over the next four years (in addition to the $330 million over five years announced in March) and implementing the new program by June 2017, a year earlier than the originally announced June 2018 start date. After consulting with parents and advocates, Coteau said that the government would also be offering money for intensive behavioural therapy and supports (which cost roughly $1,000 per week) to parents with children five and older who are on the wait-list for therapy until the new government program starts. He said that there would also be more money for diagnostic assessments and additional in-school supports for children with autism.

“After listening to the concerns of those families, we decided to take action,” says Coteau. “The enhancements we’re announcing today respond directly to the concerns of parents.”

An estimated one in 94 Canadian children is living with autism spectrum disorder (ASD). The characteristics of autism vary, and symptoms can range from mild to severe. The Ontario government estimates that there are about 40,000 children and youth living with autism in Ontario. The original proposed age cut-off for intensive therapies would have affected 1,377 children ages five and older who were already receiving IBI, 835 children on the wait-list and 1,331 younger children who were expected to turn five while on the wait-list.

Sharon Gabison is a member of the Ontario Autism Coalition, an advocacy group that helped organize parental opposition to the new program. “It’s a huge day,” says Gabison. “We’re really pleased with the changes that the government has announced.” Gabison and other parents met directly with the minister and government policy-makers and feels that the government is finally listening to parents’ concerns. She has a 19-year-old son with autism and has been involved in advocacy efforts for 15 years. “I’ve never seen anything like this,” she says. “For once, I felt that they really wanted to get it right and genuinely wanted our input.”

Gabison and other parents welcomed the government’s decision to create an advisory committee of parents, care providers and other experts to guide the design and implementation of the new program. “It’s a remarkable step forward,” says Gabison. “I feel like we actually have a voice now—one that is more powerful and more influential than ever before.”

Read more: I worry my special needs son is lost in the school system
The cost of raising a special needs child Why integration isn’t working for special needs kids—or their classmates