Autism program wrong for children, panel told province
Clinical experts feared age cap on treatment could hurt vulnerable kids, documents show
The province stood firmly behind its controversial plan to stop funding intensive autism treatment for children 5 and older last spring — even as its own expert advisory panel cautioned the move would be detrimental to vulnerable kids.
The concerns, issued in an April18 letter from the clinical expert committee on autism, came three weeks after Tracy MacCharles, then minister of children and youth services, announced Ontario’s new autism program.
The changes meant children aged 5 and up suddenly faced the prospect of not getting the intensive behavioural intervention (IBI) they had been promised. Many families had been waiting years for it.
“The new program, as it has been de- scribed, treats children 5 and up as if their needs and capacities are qualitatively different from those younger than 5 years of age,” said the committee’s letter to MacCharles, obtained by the Star under freedom of information legislation.
“There is no evidence to support this view.”
Parents like Jessica Perusco of Mississauga, whose daughter Lucia turned 5 in July, are “still in a state of uncertainty.”
Lucia started IBI in May but Perusco says because of her age, it’s unclear how long the therapy will continue.
The province had initially said children taken off wait-lists would receive a onetime payment of $8,000, roughly enough to cover two months of treatment.
But after three months of parent protests and headlines, the ministry boosted that substantially, promising those families successive payments of $10,000 to pay for private therapy until their child gets a spot in the new program next June.
The money came as a relief to many families. But children over 5 can no longer apply for IBI even if they are diagnosed at older ages, and many parents and experts in the field worry the new program will fall short of meeting their needs.
The age cap has been the most contentious piece of the revamped autism program, announced last March. The ministry said it was aimed at cutting long wait times — which average 29 months in Ontario and can be as long as four years in some regions — and providing IBI at younger ages when it’s considered most beneficial.
To do so, it planned to remove 2,200 children aged 5 and older from wait lists over a two-year period and transition another 1,400 out of treatment after their fifth birthday.
But the committee’s letter stressed that while earlier treatment is optimal, older children still benefit.
“It is important to clarify that even though 2 to 5 years (old) is the most effective time period for IBI, it does not mean that IBI is ineffective for children over 5,” the letter said.
The age cut-off sparked repeated demonstrations at Queen’s Park and around the province, a vocal campaign by the advocacy group the Ontario Autism Coalition, and the grassroots social media crusade #autismdoesntendat5.
After three months of backlash, MacCharles was replaced in a cabinet shuffle by Michael Coteau, who announced $200 million in additional supports, including the $10,000 payments for kids taken off wait lists.
The mandate of the expert committee, formed in 2012 after the Star’s Autism Project highlighted the dire shortage of autism services in Ontario, is to review research and advise the government about evidencebased services.
It does not provide input on specific policies or funding.
But in announcing the new autism program, the minister said it had been informed by scientific research from the committee and cited its 2013 report, released along with the March 28 announcement on the ministry website.
Three weeks later, the committee stated in its letter to MacCharles that the government’s autism plan “is not in keeping with the report recommendations as a whole.”
Other concerns highlighted in the letter include:
The autism program was “initiated prematurely, without sufficient consultation” with families, schools, professionals and the committee and should have been developed and tested first, perhaps as a pilot project.
The committee’s report cited by the ministry did not propose imposing an age cut-off. Instead, it envisioned an IBI program refocused on children ages two to four only if there were ample supports for older children provided in schools and through an enhanced version of the Ontario’s applied behaviour analysis (ABA) program.
ABA services outlined in the new autism program last spring “will fall short of meeting the needs of these children,” the letter said.
And without the proper school supports in place, “many children will fail to progress — or even lose previously acquired skills,” it warned.
“These two pieces should have been put fully in place and developed in consultation prior to announcing the change in the policy.”
It also called for the government to “honour the commitment” made to families of children on wait lists or receiving IBI by providing funding beyond the original $8,000 payment to ensure they get the treatment they were promised.
Correspondence between the ex- pert panel and the ministry in the two months after the autism program was launched reveals that as the Wynne government plowed ahead in the face of growing criticism, its committee of autism experts was feeling the pressure from families and the media.
“The heat we are having put on us is fierce,” committee vice-chair Dr. Wendy Roberts wrote in an April 13 email exchange with colleagues and ministry officials. “Fever building at (a) very fast pace.”
When contacted by the Star this week, six of the eight committee members named in the letter responded. Some said they couldn’t comment because of confidentiality agreements with the province. Others referred questions to panel chair Susan Honeyman.
“I am sorry that I am still bound by the confidentiality agreement,” Roberts, a developmental pediatrician and autism researcher at Sick Kids Hospital, said in an email.
“I have remained on the CEC (committee) to continue our ongoing advocacy for children and families living with autism.”
Honeyman said in an email the agreement “does not allow me to respond to your questions.”
“I’d like to reiterate our commitment to advising the ministry on the design and implementation of a new Autism Program for children and youth with ASD (autism spectrum disorder) in Ontario that would pro- vide more flexible services at a level of intensity that meets each child’s needs.”
In an emailed statement, the ministry said it consulted a number of groups while redesigning its autism program.
“We listened to a variety of input from a wide range of sources, including families, advocacy groups, service providers, and experts including the clinical expert committee (CEC). The CEC was one voice among many stakeholders that helped to shape our approach,” the statement said.
It added that Coteau “will continue to work with families and stakeholders on the implementation of the new Ontario Autism Program in order to put children first, improve outcomes for children with autism and ensure they get the supports they need to be successful in life.”
Jessica Perusco said her daughter, now 5, is thriving in IBI. She has progressed from not speaking to using two-word phrases like “Mommy, juice” to ask for what she wants.
Perusco said she’s been told Lucia won’t lose her IBI after her first sixmonth review in November as she had previously feared. But she worries it could be reduced from the current 20 hours a week.
“It’s still not resolved,” Perusco said. But she’s just focusing on the fact that at least for six months, her daughter is getting treatment that is making a difference.