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Waterloo researcher wants Ontario to publish results of new round of autism consultations

CBC News with Janet McLaughlin 06 May 2019

The province’s public consultations on the Ontario Autism Program are now underway, but one parent and researcher says it may take some effort to earn back the trust of parents and caregivers.

Throughout May, the province is hosting telephone town halls and inviting people to fill out an online survey or email the government about how it can improve the autism program. The province announced major changes to the program that took effect April 1, that work to eliminate a wait list of children waiting for a diagnosis and also give parents a set amount of money annually for therapies, depending on a child’s age.

“We had a system that was broken,” Kitchener South-Hespeler MPP Amy Fee told CBC Kitchener-Waterloo’s The Morning Edition on Monday.

“We knew we needed to do something because it is vital to get these services to these children.”

Fee, who has two children with autism, said she held roundtables before the government announced changes to the program and those meetings led to the government adding speech and language and occupational therapy to the program.

Now the government is looking to build on those changes to better serve the needs to children with autism, Fee said.

“I need to build that wraparound system and work with the minister to make sure that we are supporting children as best we can and that’s why we’re looking at how we best support children with complex needs and look at a needs-based formula going forward,” she said.

‘The autism community has trust issues with this government’

Wilfrid Laurier University associate professor Janet McLaughlin is also the mother of a child with autism. She says the previous program was needs-based, and she’s not sure how the idea of setting a budget for parents to work within meshes with the idea of a needs-based system.

“A needs-based program is one in which everyone’s clinical needs are assessed by a healthcare provider and determined based on their clinical needs, not just given a set amount of money. I really don’t know how the government is going to work within its childhood budget model and adding in the needs-based component,” she said.

The changes that took effect April 1 have been widely criticized by parents and health care providers.

As for the consultations, McLaughlin said the problem for many in the autism community is they feel the town halls Fee held were largely for show, and the policy was already created when they were taking place.

“I think it’s a fair statement to say the autism community has trust issues with this government,” McLaughlin said in an interview with CBC.

“What we really need to see in order to rebuild trust is transparent consultations. We would like to know what the data is and have an opportunity to scrutinize it so that we can ensure that indeed what people are asking for is reflected in the ultimate policy that is generated.”

Expert panel expected to be announced this week

McLaughlin said she’s “pleased with the range of opportunities” for people to speak out as part of the current, month-long consultations.

But said she wants the government to commit to releasing the findings and said she wants to know who will be on the province’s expert panel charged with analyzing the data.

“That kind of data takes quite a bit of time to analyze. I know because I do it all the time,” McLaughlin said.

“As a health policy scholar, I’ve researched autism policy and its impact on families. I would have loved to be included and I think I would have had a lot to add, but there was no process announced for how to apply to be considered for this committee.”

Fee also said she’s been “strongly advocating” for McLaughlin to be on that panel.

“We’re looking at making sure we have a wide selection of people on the panel,” Fee said.

That includes various experts, advocates, people with a Francophone background, an applied behaviour analyst, and people from education because the struggles in the education system “came up time and time again” in roundtables with parents.

As of Monday morning, McLaughlin said she has not been approached to be part of the expert panel.

Fee says it’s expected Minister of Children, Community and Social Services Lisa MacLeod will announce the members of the expert panel this week.

Fee also said it’s not yet clear if the results of the surveys and discussions with people will be released to the public.

“Right now we want to get everything to the expert panel and then allow the expert panel to provide that advice to the minister,” Fee said.