Autism group says minister warned of ‘long, hard four years’ if they didn’t support changes


Behaviour analysts say children’s minister Lisa MacLeod and her staff threatened to make their lives miserable for the next four years if they didn’t endorse the government’s changes to autism services.

In a memo to members Wednesday, the board of the Ontario Association for Behavioural Analysts said “the minister and her staff requested that ONTABA provide a quote of support, without providing full details on the program, and indicated that failure to do so would result in “four long years’ for the organization.”

It went on to say that “the minister also indicated that if a quote of support was not forthcoming, a communication that behaviour analysts are ‘self-interested’ would be released from her office … In spite of the implied risk, the organization refused.”

One analyst who attended the meeting said it was more “akin to dealing with a mob boss than an elected official.”

The rift with ONTABA is part of an escalating division between the Ford government and some in the autism community in the wake of its overhaul to the system, which MacLeod has pledged will clear the massive wait list for services in two years.

Parents of children with autism are also feeling bruised by the government’s dismissal of the Ontario Autism Coalition, a grassroots Facebook group of parent advocates, as “professional protesters.”

A senior source in the community and social services ministry said staff had met with ONTABA four times — and had provided details of the coming changes, and was under the understanding a supportive quote was planned. However, the source said, different representatives attended the final meeting and the tone changed.

The government “had a number of productive and cordial meetings” with the therapists as well as others in the autism community, from parents to service providers, said the source.

The source did not recall MacLeod saying that should the group not provide public support, rocky relations would ensue.

“She certainly said that we are committed to this plan,” said the source.

Several service providers and hospitals provided endorsements of the plan.

Meanwhile, the government faced more opposition from Autism Ontario, which said despite ministry claims, the organization will not be managing intake or dispersing money to families over the next year while the province overhauls autism funding.

Autism Ontario said its statement is aimed at correcting a “number of misunderstandings or assumptions,” since the government announced age-based funding caps to clear a therapy wait list of 23,000 kids, the organization said.

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The organization came under fire from angry parents last week when MacLeod suggested Autism Ontario was playing an integral part in her government’s plan to shift control of provincial funding for autism services from regional agencies to parents.

In at least one media interview, MacLeod said Autism Ontario will be directly involved with the new funding regime.

Under the changes announced by MacLeod Feb. 6, children with autism up to age 6 will receive lifetime caps of up to $140,000 until age 18, while those over age 6 will get $55,000. Funding will be aimed at low- to moderate-income families with those earning more than $250,000 no longer eligible, she said.

But parents, whose noisy protests in 2016 convinced the previous Liberal government to reverse a similar age-based funding scheme, say the Progressive Conservative plan makes the same mistake. They say the new funding falls woefully short of meeting the needs of children with complex needs whose therapy may cost as much as $80,000 a year. And it may be too much for others. It will likely mean cuts to 8,400 children currently receiving help with no funding cap, they add.

In a statement, ministry officials confirmed Autism Ontario will not be directly involved with the wait list or the funding.

Autism Ontario has been supporting families and people with autism in Ontario for the past 46 years and has parent representatives across the province through 25 local chapters, said spokesperson Katharine Buchan. It supports and advocates on behalf of both children and adults with autism through workshops, training and individual support, she added.

Social media attacks against the organization’s staff and volunteers, many of whom are also parents with autistic children, have been difficult, she said.

One part-time Autism Ontario staffer in a local chapter, who is a mother of an autistic child, called police over what she felt were threatening Facebook posts from another mother, Buchan confirmed.

“The anger is justified, but I’m not sure it makes sense to be directing it at one another when we need to be working together ensure that all children’s needs are met,” she said.

NDP Leader Andrea Horwath said the government should not be “labelling groups of parents who are doing their best for their children as professional protesters.

“It’s despicable. Shameful.” she added.

“They are using these tactics to try to besmirch these parents, parents who are very worried about their children,” she said in an interview

She called analysts’ claim they were pressured to endorse the autism overhaul “strong arming professionals in the autism field, trying to knuckle them down and prevent them from providing their professional opinion on the government’s changes.”

Kendra Thomson, the incoming president of ONTABA, said her organization was not provided with any details about how their profession would be regulated, and because they weren’t told what the government’s planned registry would look like, they could not publicly support it.

As for allegations ONTABA is a lobby group, she said it is a non-profit that represents a number of professionals and promotes evidence-based services.

She also said the group was not “meaningfully consulted” on the autism changes, and despite the discord, “if we were given the opportunity to provide meaningful conversation, that would surpass the tone and anything (communicated) to date.”

She said ONTABA’s representatives left that final meeting feeling very disappointed, though “the tone was consistent with previous meetings with myself and others.”

Louis Busch, a past-president of ONTABA who attended the final meeting with the minister and her staff, said he went as a “private citizen” and that it was a tense meeting from the outset, unlike any he has attended with the past five ministers to hold this portfolio.

Busch, a board-certified behaviour analyst who works with adults, said after pressing for details, they were told a regulatory college would not be announced, but a website would provide a list “which is not regulation.”

Busch noted that MacLeod said without public support from ONTABA, “it’s going to be a long, hard four years for you.”

“This was more akin to meeting with a mob boss than an elected official,” Busch said.

Meanwhile, at a Wednesday announcement on Ontario’s fiscal situation, Finance Minister Vic Fedeli said there will no additional funding for autism services beyond the $321 million announced last week.

“There were 23,000 families with children with autism who received no help whatsoever, so this plan is a fair, sustainable, and equitable plan,” said Fedeli, noting it has been well-received in his hometown of North Bay.

“We all don’t have the same services that are readily available in the south, so we’ve delivered on that. That’s why at home they’re very happy with this plan,” the treasurer said.

With files from Robert Benzie

Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter: @lmonseb

Kristin Rushowy is a Toronto-based reporter covering Ontario politics. Follow her on Twitter: @krushowy





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