Some parents of children with autism are breathing a sigh of relief today after the provincial government said it would extend contracts for those receiving autism therapy under the province's old program.
This comes after significant uncertainty for many families whose contracts for autism therapy under the previous Liberal government's behaviour plans were set to expire in the coming months. Parents were expecting the Progressive Conservative government to roll out a new needs-based autism program in April, but Minister of Children, Community and Social Services Todd Smith announced in December that while some services like parent training would be brought in by the spring, "reaching full implementation will take us into 2021."
Parents present at the December announcement broke down in tears upon hearing this, with Smith not offering a date as to when exactly families would see core services, such as Applied Behaviour Analysis (ABA), occupational therapy, speech therapy and mental health services, and just saying "as soon as possible." Asked at the time about the children receiving therapy under the old Liberal plan and whether their funding would be extended, Smith offered no definitive answer other than to say "what we’re going to do is have a seamless transition into the new program, but it’s going to be essential that the working group, implementation team, help us get there."
Palmer Lockridge, a spokesperson for the ministry, said in an email to QP Briefing that the government "formerly committed to a seamless transition for children and youth currently receiving behavioural plans" and that the announcement today "reaffirmed that commitment." The announcement wasn't made formally, but as an update on a government website, and answered one of the questions many had been asking. Smith also flagged the changes in a tweet late this morning.
Please see more information on the Ontario Autism Program transition for those with existing behaviour plans or childhood budgets. ⬇️ https://t.co/PkjF1adSGw
— Todd Smith (@ToddSmithPC) January 24, 2020
"If you have an existing behaviour plan, it can be extended with no gap in service up to its current level of intensity, or less where clinically appropriate, until you transition into core services in the new needs-based autism program," the government website said. "As per the Ontario Autism Program behaviour plan instructions, it is expected that clinicians are conducting regular reviews every six months to assess a child’s progress and set goals. Your service provider will discuss the extension of your behaviour plan with you prior to your existing plan expiring."
Janet McLaughlin, an associate professor of health studies at Wilfrid Laurier University, whose eight-year-old son Sebastian has autism, said there's a mixed reaction in the community right now.
Her son is receiving 20 hours of therapy each week and his behaviour plan was set to expire at the end of April.
"This is a huge relief for many of us, we had been really worried because our contracts are coming to an end in the next few months and just to know that we won’t have to have a sudden drop in therapy, to know that our kids will be extended into the new program is tremendously reassuring," McLaughlin said.
But she said most children with autism will either get interim funding or a "childhood budget" with a possible top-up of the interim funding — both of which, she said, do not constitute needs-based therapy.
"For any families who have a high-needs child like mine, I think today’s announcement won’t be at the same level of reassurance that I’m experiencing," she said. "Many families are very concerned because they have been waiting so long for needs-based therapy and this doesn’t give them that, it gives them a temporary holdover, essentially. And that might be fine for a child with lower needs, but for a child with high needs, it’s just a drop in the bucket."
Kerry Monaghan, an Ottawa mother of two children with autism, also offered mixed reviews of today's announcement. Her six-year-old son Jack is on the severe end of the autism spectrum and has been receiving about 25 hours of therapy each week since March 2018. He entered therapy under the previous Liberal government's plan, with his current contract set to expire in the spring.
"Today’s added information to the OAP website is a welcome one and will provide significant relief to some of the families in the community," Monaghan said in an email. She noted however that "it’s imperative that that not distract from the fact that until a new needs-based program is rolled out," thousands of children "are not receiving needs-based therapy, and there has been no additional offering as to when they can expect it."
Meanwhile, the government said on Thursday that it would start inviting families to apply for "interim one-time funding" this week until the new program is rolled out.
The interim funding will offer families either $20,000 (ages 1-5) or $5,000 (ages 6-17) based on a child's age as of April 1, 2019, according to details released on the government's website. Smith said in December that families would be "invited to participate" in the one-time funding by the end of March. According to the government's website, eligible children include those registered in the autism program before March 31, 2020, those who haven't received an invitation to apply for a "childhood budget" and those who are not currently receiving therapy under the previous Liberal government's plan.
The "childhood budgets" were part of the heavily criticized plan that Smith’s predecessor Lisa MacLeod announced in February 2019, which involved giving children either $5,000 or $20,000 depending on their age — amounts that some parents said would only allow them to purchase a fraction of the therapy their children actually needed.
Lockridge also noted today, however, that families "who have previously received a childhood budget may also be eligible to receive interim one-time funding once their current annual agreement expires provided that they have not yet transitioned into core services in the new needs-based autism program."
Last fall some parents voiced concern about their "childhood budget" funding running out before a new program was rolled out and called on the government to provide families with a top-up. Asked by QP Briefing about this in November, Smith didn't close the door to some kind of a top-up or renewal of "childhood budgets," saying that he would "consider" it.
Monaghan's daughter Charlotte, who is four and has a mild diagnosis, received a "childhood budget" cheque of $20,000 in July 2019 after being on the autism program waitlist since July 2017. Monaghan previously said she expected the money to run out by the end of the 2019.
She said today that "childhood budget" children would "not receive continuity of service, and were informed that they will receive one more payment one year after receiving their first cheque."
"The remaining (children) on the waitlist will receive the renamed 'childhood budget' some time in the coming months, with no promise of seamless transition or services that meet their needs," she said. "Although the information is more than welcomed for some, it is more of the same for many, many others."