Published Tuesday, May 17, 2016 5:17PM EDT
TORONTO — A doctor who led an expert report on autism that the Ontario government is using to justify a controversial treatment funding decision is speaking out, albeit cautiously.
Ian Dawe was the chair of an expert committee that made several recommendations to the government, including that early Intensive Behavioural Intervention be provided to kids between the ages of two and four.
The government has decided, as part of a new Ontario Autism Program, to defund IBI for kids five and over, instead transitioning them to “enhanced Applied Behavioural Analysis” treatment.
But parents whose children had waited for years on the IBI wait list, only to be removed after the new program was announced, are protesting the changes.
They point to tweets by Dawe — who is no longer the chair of the committee — saying there is “no evidence” a woman’s six-year-old son with autism “might not benefit” from IBI as proof the expert advice contradicts the government’s decision.
“First, I’m so empathic to your situation, having heard something disturbingly familiar myself…” Dawe wrote. “Second, Do not EVER cave to the ‘opinions’ of others. They do not know your child’s potential like you do.”
Dawe said in an email to The Canadian Press that he stands behind the report, but that the committee’s mandate was not to advise the government on funding decisions.
“My Twitter comments were an empathic personal response to an individual who reached out to me and should only be interpreted as such,” Dawe wrote.
“I stand firmly behind the recommendations made in the report by Ontario’s Clinical Expert Committee on Autism, which laid out a comprehensive strategy for what a system for autism care should look like…I believe the substance of my message last week is not at all inconsistent with what I wrote (in 2013-14).”
There were 10 recommendations in the report, and the current debate is about the execution of half of one of them, Dawe wrote.
The newly announced Ontario Autism Program, once it’s fully rolled out in 2018, will integrate IBI and ABA therapies, currently in two separate streams, into a flexible service the government is calling enhanced ABA.
In the meantime, 835 children who are older than four have been removed from the IBI wait list and the government is giving their parents $8,000 to pay for private treatment. Parents say that will only pay for, at most, a few months of intensive therapy.
More than 1,300 kids over four who were already receiving IBI are being transitioned to the new enhanced ABA following their next six-month assessment.
The expert report recommended that children with Autism Spectrum Disorder between the age of two and before their fifth birthday receive early IBI treatment for between 12 and 24 months.
The government has said its new program will mean 16,000 more children will receive services — mostly ABA — and that IBI wait times will go from a current average of 2 1/2 years to six months by 2021.
The Progressive Conservatives urged the government to reverse the decision to take kids over four off the wait list.
“The future of these children is in this government’s hands,” leader Patrick Brown said. “Do the right thing.”
The NDP supported the call, with leader Andrea Horwath saying, “The Liberal legacy on the autism file is nothing short of shameful and disgraceful.”