Belleville mom fights changes to Ontario’s Autism Program
“In my son’s case, it hasn’t had a huge impact on him because he was already at the tail end of his therapy,” Sarah Daley, local activist, said about how changes to Ontario’s Autism Program has affected her family. Photo Courtesy of Sarah Daley
BELLEVILLE – Sarah Daley’s seven-year-old son, Alex, was diagnosed on the severe end of the autism spectrum when he was two years old.
Because of his diagnosis, Alex spent three years in Applied Behaviour Analysis therapy, an individualized, one-on-one service that teaches children with autism life skills, learning skills, speech, communication and social skills. The province paid for the program.
He was almost finished the therapy last year when the provincial government announced changes to the Ontario Autism Program. essentially cutting off the majority of funding for programs and services. Daley said it affected how the last month of Alex’s therapy went. Because therapists weren’t getting new clients, some left the agency in search of other employment and there weren’t enough therapists to deliver sessions to remaining kids.
“So (my) son’s last month of therapy was half of what he was supposed to have.”
Parents protest outside MPP Todd Smith’s office on Jan. 19, 2020. The needs-based program that was supposed to roll out in April 2020 is now delayed until 2021. Photo Courtesy of Sarah Daley
Now, Daley is fighting for families of autistic children who didn’t even have a chance to start the program because of the province’s cuts.
“One family in particular received a call that (their son’s) number had come up and it was time for him to get intensive ABA therapy. Then the next call was ‘sorry, we can’t give him the therapy because the government has cut it off.’ He was on the verge of getting life changing therapy and it was ripped away from him at the last second. They still haven’t received (therapy). They haven’t even received their childhood budget.”
The provincial government replaced funding with a childhood budget for families in the program. Children under six years old are eligible to receive $20,000 a year while children who are six-years-old and under are eligible to receive $5,000. Before these changes, families either received direct funding or could use one of the province’s service providers.
A year of intensive ABA therapy costs between $60,000 and $80,000, leaving parents to come up with the rest of the money out of their own pocket. Daley said the childhood budget offered by the Ford government doesn’t come close to covering costs.
She has has been taking on the fight for other families by organizing protests outside of Minister of Children, Community and Social Services MPP Todd Smith‘s office because she “couldn’t just sit back and let them completely ruin a system and devastate families without doing something about it,” she said.
Daley said that she’s talked to Smith about her concerns during a Belleville listening session he hosted in July to hear feedback from the autism community.
“He’s definitely been sympathetic and says he understands, but his actions don’t follow that,” she said.
She also sent a letter to her provincial representative, Hastings-Lennox and Addington MPP Daryl Kramp, but she hasn’t received a reply. She’s now in the process of trying to go in front of Belleville City Council to ask them to send a letter to the provincial government to ask for changes to the autism program. She says she has been unable to go in front of council because of how many deputations council is receiving. She says she hopes to be apart of the Feb. 10 meeting.
Todd Smith took over as Minister of Children, Community and Social Services from Lisa Macleod after Ford’s June 2019 cabinet shuffle. Photo by Lindsey Cooke, QNet News
QNet News reached out to MPP Todd Smith this week, but he was unavailable for an interview. Smith’s press secretary, Christine Wood, provided this statement on his behalf over email:
“The new Ontario Autism Program’s core services will be needs-based and include applied behaviour analysis, speech-language pathology, occupational therapy and mental health supports,” Wood wrote. “We are also taking steps to support children and youth who are waiting for core services. All families on the waitlist, who have not yet received an invitation to apply for a childhood budget will receive an invitation for interim one-time funding of either $5,000 or $20,000 before the end of March 2020.”
Wood also wrote that the provincial government put together the Ontario Autism Program Advisory Panel to receive input from experts and parents on what should be put into the new program. To add these recommendations, she says the government will need more time to put the program together.
But Wood wrote “families with current behaviour plans can now be extended with no gap in service, up to their current level of intensity or less where clinically appropriate, until their child transitions into the new program’s core services.”
Daley said that making children wait longer for the full program isn’t the right move and they need to change their priorities.
“Their priorities are incorrect and don’t suit the needs of families.”
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