The number of children needing autism support has nearly doubled since the Ford administration announced it was reviewing the program three years ago.
The waiting list is now roughly 50,000, enough kids to fill every seat at the Rogers Center.
– TheSpicySequel (@SequelSpicy) October 1, 2021
Sofica Llorca’s two children, ages three and eight, are among those still on the list and she has been eagerly awaiting the implementation of the new program.
“I feel like it’s a desperate wait, sometimes I feel like I’m not expecting anything. I have had no communication, no letters in the mail, no emails, nothing, ”he told CityNews.
About 40,000 of the children on the waiting list are receiving interim financial support as the new program takes off, according to the Ontario government.
However, the president-elect of the Ontario Association for Behavior Analysis, Nancy Marchese, argues that the support is inadequate because these children do not receive essential basic services.
“Basic services are essentially intervention or therapy that addresses the needs of children,” Marchese said. “Right now, most families are receiving what I would consider an allowance.”
For Lorenzo, Llorca’s three-year-old son, who does not speak, this means that she recently received $ 20,000 from the government, which she claims covers six to eight months of minimum Applied Behavior Analysis (ABA) hours. acronym in English) and nothing else.
“There are three, four or five, up to six pages of recommendations, it should be in this therapy and this therapy and this therapy but for now we can do one,” added Llorca. “It’s heartbreaking when you feel like ‘Oh, I wish there was so much more I could do.’
Staff from the Ministry of Children, Community and Social Services tell CityNews, under Ontario’s renewed Autism program, each child will be assessed to determine their needs and will be classified into one of three categories: limited, moderate and extensive.
The child would then get a designated coordinator to help navigate the resources. However, it has taken years to get organized and getting children to therapy as soon as possible is critical.
Of the 50,000 children on the autism list, 600 are receiving basic services as part of a pilot test.
The government expects to have 8,000 enrolled within a year. Todd Smith, the former Minister of Children, Community and Social Services, who has since been replaced by Merrilee Fullerton, had promised to reach that goal in December 2021.
Even the government acknowledges that not everyone will be happy with the new system.
Parents have long been asking for a need-based autism program with no age limits. Ministry staff tell CityNews that it is not possible to do that without returning to the long waiting lists of 2018, when only 25 percent of children were receiving treatment.
Under the new system, a three-year-old with the greatest needs would receive $ 65,000 per year. That drops to $ 41,000 when they turn 10.
Lucas, Sofía’s eldest son, has been on the waiting 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 whether it will be extended next year, forcing his mother to make a difficult decision.
“I completely stopped his ABA therapy, he needs to know how to better socialize with his peers,” he said. “But that has stopped due to lack of funding.”
Ministry staff estimate that 10 to 20 percent of children are at the harshest 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 that her current funding will be reduced to the half or even more.
“Please don’t cancel us,” he said. “Don’t cancel the kids, don’t cancel your future, that’s what I mean.”
The provincial government doubled the budget for autism to $ 600 million and has said that children who do not receive all the help they need under the program will be able to access resources from the Ministry of Health.
It is unclear when the autism program will be fully implemented and families will have a clearer picture of the future. Ministry staff say they do not have a deadline at this time.