OTTAWA — The number of children who need support for autism has almost doubled since the Ford government announced it was overhauling the program three years ago.
The wait list now stands at roughly 50,000, enough children to fill every seat in the Rogers Centre.
Sofica Llorca’s two sons, aged three years old and eight years old, are among those still on the list and she has been anxiously waiting for the new program to be implemented.
“I feel like it’s a hopeless wait, sometimes I feel like I’m waiting for nothing. I’ve had no communication, no letters in the mail, no emails nothing,” she told CityNews.
Approximately 40,000 of the children on the wait list are receiving interim financial support as the new program gets off the ground, according to the Ontario government.
However, President-Elect for the Ontario Association for Behavioural Analysis Nancy Marchese argues the support is inadequate because those children aren’t getting critical core services.
“The core services are essentially intervention or the therapy that’s addressing the children’s needs,” Marchese said. “Right now, most families are receiving what I would consider a subsidy.”
For Llorca’s three-year-old son Lorenzo, who is non verbal, this means he recently received $20,000 from the government, which she said, covers six to eight months of minimum Applied Behavioral Analysis (ABA) hours and nothing else.
“There are three, four or five, even six pages of recommendations, he should be in this therapy and this therapy and this therapy but for now we can do one,” Llorca added. “It’s gut wrenching when you feel like ‘Oh I wish there was so much more I can do’.”
Ministry of Children, Community and Social Service staff tell CityNews, under the revamped Ontario Autism program, each child will be assessed to determine their needs and will be put into one of three categories: limited, moderate and extensive.
The child would then get an appointed coordinator to help them navigate resources. But, it has taking years to organize and getting children into therapy as soon as possible is critical.
Of the 50,000 children on the autism list, 600 are receiving core services as part of a pilot test.
The government hopes to have 8,000 enrolled a year from now. Todd Smith, the former Minister for Children, Community and Social Service, who has since been replaced by Merrilee Fullerton, had promised to hit that target in December 2021.
Even the government acknowledges not everyone will be happy with the new system.
Parents have long been calling for an autism program based on need with no age caps. Ministry staff tell CityNews it’s not possible to do that without returning to the long wait lists from 2018 when only 25 per cent of children were getting treatment.
Under the new system, a three-year-old with the highest needs would get $65,000 per year. That drops to $41,000 when they turn 10.
Sofia’s eldest son Lucas has been on the wait list for three years. Last year, he received $20,000 in funding for the first time.
It had to be used during the height of the pandemic when few resources were available. Now the money has run out and the government has not said if it will be extended next year, forcing his mother to make a difficult decision.
“I’ve completely stopped his ABA therapy which he needs to know how to socialize better with his peers,” she said. “But that’s been halted because of lack of funding.”
Ministry staff estimate 10 to 20 per cent of children are at the most severe end of the spectrum, like Eric, who is about to turn nine.
Eric is one of 3,800 children still under the old Liberal autism program and currently receives 40 hours a week of therapy, but when he turns 10, his mother, Eva Jhabas, fears his current funding will be cut in half or even more.
“Please, just don’t cancel us out,” she said. “Don’t cancel the kids out, don’t cancel their future, that’s what I want to say.”
The provincial government doubled the autism budget to $600 million and has said children who don’t get all the help they need under the program will be able to access resources in the Ministry of Health.
It’s unclear when the autism program will be completely rolled out and families will have a clearer picture of the future. Ministry staff say they don’t have a target date at this time.
With files by CityNews journalist Cynthia Mulligan
