TORONTO – 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 the amount and 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.
Families will receive up to $20,000 a year until their child turns six. From that time until they are 18 it would be $5,000 a year.
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.
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“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 families are currently spending two years on the wait list, even though early years supports are key.
“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. “(The old program) abandoned children and families in the greatest need.”
The program will be means tested, with support targeted to lower- and middle-income families. Those making more than $250,000 won’t receive any funding, MacLeod said.
A child entering the program at age seven would receive up to $55,000 until they’re 18, the government said.
Kristen Ellison’s eight-year-old son spends 25 hours a week in treatment, at a cost of nearly $6,000 a month.
“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.”
Ellison said need is not necessarily based on age.
“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 … What’s going to happen to them?”
NDP critic Monique Taylor called on the government to fund families according to the needs of their children, not just their age and income.
Families on the waiting list can expect to receive funding within the next 18 months, MacLeod said.
Todd Boyce, whose seven-year-old son has been on the waiting list for 1 1/2 years, said it has been frustrating.
“Every time you get to the next (step), it’s just another wait,” he said. “On the surface, this seems like really good news.”
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 new program has the same annual budget of $321 million as the Liberal program.
The new program will further include establishing an agency to help families register, asses their funding eligibility, distribute the money and help them choose which services to purchase. The government will also be publishing a list of verified service providers.