Ontario overhauls autism program to attempt to eliminate wait list

Ontario is overhauling its autism program in an attempt to clear a waiting list of 23,000 children, but families and advocates say that backlog will be eliminated at the expense of quality of treatment.

The changes announced Wednesday by Children, Community and Social Services Minister Lisa MacLeod include giving funding for treatment directly to families instead of regional service providers, dependent on age, with up to $140,000 for a child in treatment from the ages of two to 18.

But intensive therapy can cost between $60,000 and $80,000 a year, said Ontario Autism Coalition president Laura Kirby-McIntosh, which means that families will quickly burn through the funding.

“Autism is a range in terms of severity and what this does is it guarantees that kids at the severe end of the spectrum will not get what they need,” she said. “It will eliminate the wait list at the cost of the quality of lives of people with autism.”

Parents of children with autism launched protests against the previous Liberal government in the spring of 2016 when it announced that kids over four would be cut off from funding for intensive therapy. The Liberals ultimately backed down. Kirby-McIntosh said they will fight the latest changes from the Progressive Conservative government too.

“Does the government think that we’re going to be any different to them because they’re a different political party? Have they met us?” she said.

Bruce McIntosh – her husband and the former coalition president – resigned Wednesday from his post as a Progressive Conservative staffer in response to the new autism plan. He had gone to work for Amy Fee, MacLeod’s parliamentary assistant. Fee, as a parent to two children with autism spectrum disorder, had protested alongside them, and they had hoped both she and McIntosh could make a difference, Kirby-McIntosh said.

MacLeod said the amount of funding provided to parents will depend on the length of time a child will be in the program, and she said she would like the money to be front-loaded for children under six.

“We know that early intervention is when autism supports make the greatest difference, and yet families have told us that under the Liberal program they continue to wait with no hope in sight,” she said. Families can spend two years on the wait list.

A child entering the program at age seven would receive up to $55,000, the government said.

Watch the government’s full announcement below.

Kristen Ellison’s eight-year-old son spends 25 hours a week in treatment, at a cost of nearly $6,000 a month. Ellison said that means she would get maybe another year of funding.

“We’ve made progress, but the gap was so wide that he needed more time,” she said. “(He’s) still not toilet trained and he’s still mostly non-verbal, so a lot of those big hurdles we’re still dealing with.”

Advocates are criticizing the program as being age based, instead of being based on need for treatment.

“It’s at the expense of levels of treatment,” Ellison said. “Need is not based on age. It’s just not. There are lots of two year olds that are potty trained or talking and have deficits in other areas. There’s lots of eight year olds that are in diapers, who don’t go to school because they can’t integrate, who harm themselves and others … What’s going to happen to them?”

Families on the waiting list can expect to receive funding within the next 18 months, MacLeod said.

The government is also doubling the funding for five diagnostic hubs to $5.5 million a year for the next two years to address the diagnosis waiting list of 2,400 children, who currently wait on average for 31 weeks.

“(The old program) abandoned children and families in the greatest need and it actively blocked thousands of families from affordable, early intervention for their children,” MacLeod said.

The new program will include establishing a new agency to help families register for the program, asses their funding eligibility, distribute the money and help them choose which services to purchase.

Clinical supervisors will have to meet program qualifications by April 1, 2021 and the government will be publishing a list of verified service providers.

A former P.C. staffer is so upset about the Ontario government’s plan to overhaul the autism program, he quit right after the changes were announced Wednesday. Watch below.