Ontario coalition pushes for transparency on autism policies
TheStar.com – News/Canada – Coalition asks province to waive agreements it fears will muzzle advisory panel.
Sept. 18, 2016. By ANDREA GORDON, Education Reporter
Ontario should lift the veil of secrecy from its new autism advisory panel so policy decisions affecting children are transparent and openly debated, an autism advocacy group says.
In a letter, the Ontario Autism Coalition asked Children’s Minister Michael Coteau to waive confidentiality agreements it says will muzzle panel members and limit their ability to hold the government to account.
“It’s time to restore some trust between the government and the autism community by permitting a full and open discussion about how we help kids with autism in Ontario,” said the letter sent late last week.
The newly launched Ontario autism program advisory committee includes parents, educators and experts. It was set up this summer to oversee rollout of the Ministry of Children and Youth Services’ new autism plan. Coalition president Bruce McIntosh of Thornhill, who has two teenagers on the autism spectrum, is among its 16 members.
The group’s letter to Coteau came in the wake of a Star story that revealed that a different ministry panel — a committee of clinical experts on autism appointed in 2012 — stayed publicly silent about its serious reservations regarding the revised autism program announced last March.
The program sparked an immediate uproar because the plan was to reduce long wait times for treatment by making children aged 5 and older no longer eligible for intensive behavioural intervention (IBI). The move affected 3,500 children on wait-lists or in treatment, many of whom had waited years to get it.
In a letter to Coteau’s predecessor, Tracy MacCharles, three weeks after the age cap was announced, the expert committee cautioned the move would be detrimental to vulnerable children.
The three-page letter, dated April 18, was obtained by the Star under freedom of information legislation, along with other email correspondence between the committee and the ministry in the two-month period following the announcement.
When contacted by the Star last week, some committee members declined to comment, citing the confidentiality agreements. Others referred questions to panel chair Susan Honeyman and vice-chair Dr. Wendy Roberts, who also refused requests, saying they were bound by the agreements.
The Ontario Autism Coalition says secrecy imposed by such agreements is “troubling,” especially for families plagued by uncertainty and wary of government promises.
Laura Kirby-McIntosh comforts her 16-year-old son Clifford after he momentarily choked while eating dinner. The Ontario Austim Coalition says secrecy imposed by confidentiality agreements is “troubling” especially for families.
Laura Kirby-McIntosh comforts her 16-year-old son Clifford after he momentarily choked while eating dinner. The Ontario Austim Coalition says secrecy imposed by confidentiality agreements is “troubling” especially for families. (LUCAS OLENIUK/TORONTO STAR)
Last spring, McIntosh was at the forefront of grassroots protests against the age cut-off. He played a role in the ministry’s decision to amend its plans last June, when Coteau took over the children’s services portfolio in a cabinet shuffle and announced that there would be funding for kids taken off wait-lists to cover the costs of a year’s treatment. He also accelerated the program rollout, vowing services would be in place by 2017.
The new advisory panel McIntosh sits on is one of the few formal avenues for families to have their voices heard. The coalition also includes people on the autism spectrum and professionals in the field. It relies on regular input from a group of 50 young adults with the condition and has also been pushing for people with autism to be included in government advisory roles.
But to join the panel, members had to sign confidentiality agreements that prohibit them from “directly or indirectly” engaging in public commentary on the panel’s undertakings without “explicit written consent” from the ministry. The agreements also stipulate that “any requests for public comment should be deferred to the ministry.”
McIntosh says he signed in June despite his own reservations and objections from other parents, who worried “it was going to be a muzzle and limit my effectiveness.”
After the Star story last week, he and coalition colleagues had a change of heart, fearing the restrictions would rob them of the ability to speak up on key issues and ensure that their opinions are accurately interpreted and portrayed to the public.
“Our nervousness has now turned to very justified worry and anger,” the coalition wrote in its letter to Coteau.
Those concerns are legitimate, says Amir Attaran, a professor in the faculties of law and medicine at the University of Ottawa.
“Good for them,” he said, after hearing about the coalition’s stance on what he calls “overzealous” restraints imposed by confidentiality agreements.
Attaran, who has been “uninvited” from panels after crossing out selected phrases in such agreements before signing, calls it “grotesquely inappropriate” for governments to try to prevent panel members from publicly sharing their personal views.
Dissent is an important part of decision-making and should be an open part of the process, he says.
While restricting members from sharing proprietorial information or input from others is appropriate, “deliberations and opinions belong to the people doing the deliberating and (expressing of) opinions,” he said.
“How dare the ministry suppress that?”
In an emailed statement, the children’s ministry said confidentiality agreements are common for advisory panels, “so that individual members feel they can provide open and honest input as part of their work.”
“The ministry does not stand in the way of CEC (clinical expert committee) members speaking to the media,” it said.
However, multiple emails sent to committee members from ministry staff last spring before and after the autism program was announced — and obtained in the freedom of information request — stress that questions from the media should be redirected to the ministry.
Children’s Minister Michael Coteau says confidentially agreements are common so that individuals on adivsory panels are able to “provide open and honest input.”
Children’s Minister Michael Coteau says confidentially agreements are common so that individuals on adivsory panels are able to “provide open and honest input.” (MELISSA RENWICK/TORONTO STAR)
The ministry says the expert committee was one of many groups that helped shape its new autism plan. The experts’ mandate is to advise the government on evidence-based research and clinical practice, though it doesn’t play a direct role in policy or funding decisions.
In announcing the autism program last March, the Liberals cited the panel and a report it completed in 2013 that mapped out what a complete continuum of services could look like for children from infancy through the school years. That report was simultaneously released on the ministry website.
In the ensuing weeks of criticism and rallies at Queen’s Park, the Liberals continued to defend the plan and reference its expert panel, even after the group’s April 18 letter stated the new program was “not in keeping with the (2013) report recommendations as a whole.”
The letter from the eight panel members also said:
The autism program was “initiated prematurely, without sufficient consultation” and should have been developed and tested first.
While IBI is most effective for children ages 2 to 5, there is no evidence it is ineffective for children older than 5.
Redirecting IBI to younger ages should only happen once ample services are in place for kids over 5, including robust school supports and an enhanced and scientifically evaluated applied behaviour analysis (ABA) program. But the plan as outlined falls short of meeting the needs of those children.
Because panel members will not comment, their views on changes announced by Coteau in June are unclear. Many parents, however, worry the new program will not meet their children’s needs.
On May 17, deputy premier Deb Matthews was among cabinet ministers continuing to defend the program in the legislature. Responding to an opposition question, she read aloud an endorsement from a March 29 ministry press release attributed to Dr. Wendy Roberts, a developmental pediatrician, autism researcher at Sick Kids and clinical expert committee member.
In an email Roberts sent to two ministry officials the following day, she wrote, “I am very concerned about the ongoing reaction to the reference to my name in the house and misrepresentation of my perspective as I learned the details of the (autism program) rollout.”
Two days later, Roberts asked in another email, “is there a lag in having my endorsement and my name in news releases being removed from the MCYS (ministry) website?”
Roberts did not respond to the Star’s requests for comment on the emails.
Her endorsement no longer appears on the ministry’s website.
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