Autism panel recommends rewrite of Ontario’s controversial program

Thestar.com
Oct. 30, 2019
Kristin Rushowy and Laurie Monsebraaten

The Ford government should rewrite Ontario’s ill-conceived autism program so that children get the services they need in a timely manner regardless of age, according to a report to be released this week from the province’s expert panel.

Families should receive funding for behavioural programs as well as other services such as occupational therapy -- though not physiotherapy -- the report says. And it urges the government to ensure no child diagnosed with autism is forced to sit on a treatment wait list without some kind of support, sources familiar with the panel’s work told the Star.

The panel, appointed by the social services minister to address parent concerns, wrapped up its work Monday and the government is expected to make the report public as early as Wednesday.

It doesn’t recommend giving everybody, everything they want, said the sources who are not named because they are not authorized to speak about the report. But they say there are enough positive changes recommended to meet most families’ needs.

“The panel has worked tirelessly over the past several months, volunteering their time and sharing their knowledge, expertise and insights. I sincerely thank all panel members for taking time away from their busy lives to carry out this important task,” said Todd Smith, minister of children, community and social services. “I am confident the panel’s recommendations will serve as a strong foundation for the new Ontario Autism Program.”

The report lays out a road map for the province to move to a needs-based funding model, moving away from its original revamp that set limits depending on a child’s age or family income. However, the panel did set some limits, or “parameters,” for services based on accepted clinical guidelines to keep within the $600 million available in annual funding with the goal of helping as many kids as possible.

“I think a couple of things have been done to address the bottleneck and to provide something to families while they are waiting,” said one source. “That’s been a huge criticism -- you get the diagnosis, you put your kid on the wait list and you sit and twiddle your thumbs for four years. That’s not going to happen anymore.”

However, the source said, “there will still be a wait list. They are just not going to sit there with nothing.”

If the panel’s recommendations are implemented, sources predicted Ontario would have the most robust autism treatment program in the country.

There have been reports of families leaving Ontario for Alberta and even Newfoundland to access autism services for their children.

“I would say a number of options that parents requested are included” in what the funding can be used for, said another source familiar with the panel’s work. “There was an attempt to ensure that the highest-priority services were covered in this program.”

The source said that “scientifically supported treatments” -- such as applied behavioural analysis (ABA) or intensive behavioural intervention (IBI) therapies -- will come with caps on “intensity and duration” based on an individual child’s needs.

“Parent choice is still there, parents will have to educate themselves about what the best support and treatments are for their child’s particular needs,” the source said.

The new program is expected to be in place by April, though some advocates have been pushing for faster implementation.

New Democrat MPP Monique Taylor, her party’s children and youth services critic, thanked the panel members for all of the work they put in, “knowing that it’s been hard and painful to make these decisions and recommendations” on such an important issue.

“We will still continue to look to the government to make sure kids get all the services they need, when they need them,” Taylor said.

On Monday, panel member Laura Kirby-McIntosh took to Facebook after the group’s final meeting, posting “there are better days ahead.”

“Our work as the panel is done. What happens next is up to all of you. Read our report with an open mind and a positive spirit,” wrote Kirby-McIntosh, the mother of two teens with autism and president of the Ontario Autism Coalition parent advocacy group, which organized a massive rally at Queen’s Park last March to protest the province’s handling of the file.

When contacted by the Star, she said she could not comment in advance of the report’s release.

However sources familiar with the panel’s work, speaking to the Star on the condition they not be identified, said coverage of physiotherapy is one of the issues the panel grappled with since it can be expensive for families.

The panel was appointed by former social services minister Lisa MacLeod last spring after parent outrage over the province’s plan to clear a therapy wait list of 23,000 children by setting annual “childhood budgets” of $20,000 for kids up to age six and $5,000 for older children until age 18.

It led to numerous protests around the province and at Queen’s Park.

Despite the government’s subsequent pledge to double annual autism program funding to $600 million, critics charged that children with severe challenges often require treatment that costs as much as $80,000 a year and that only needs-based funding would address the shortfall.

MacLeod, who appointed the panel to determine how to provide funding top-ups for children who need more treatment, was replaced by Todd Smith in a June cabinet shuffle.

Smith committed to introduce long awaited provincial regulations for professionals trained in ABA to treat people with autism. And he invited the panel to make any recommendation that would improve the autism program, keeping in mind the province’s budget.

In July, Smith said the new system would be in place by April 2020. At that time, he apologized “for the anxiety this has caused parents across Ontario” given the outcry over the government’s first attempt at fixing the system.

It was “clear to me that we didn’t get the redesign right the first time,” he said.

The 21-member panel was co-chaired by former Liberal social services minister Marie Bountrogianni and Marg Spoelstra, executive director of Autism Ontario. Ministry officials and political staff attended all meetings.

Health Minister Christine Elliott and Education Minister Stephen Lecce attended some meetings as did Smith, who broadened the panel’s terms of reference when he took over the ministry.

The panel, made up of parents, advocates, clinicians, academics and adults with autism, met 18 times over the summer and into the fall.

There was concern that the diverse makeup of the panel, which included people with autism who have likened ABA therapy to child abuse, was being set up to fail.

But in an interview this summer, Kirby-McIntosh said panel members were respectful and worked well with each other.

As of the end of September, 11,300 children were receiving services under the province’s autism program and more than 25,000 children waiting, according to the government’s website.