Ford government to tweak autism program overhaul amid intense pressure

Thestar.com
March 22, 2019
Kristin Rushowy and Laurie Monsebraaten

The Ford government says it will look at providing more needs-based help for children with autism -- while eliminating means-testing for services -- bowing to intense pressure from families over controversial changes it made last month.

Families will also now be able to renew current behavioural therapy services when they expire, for an additional six months, to help adjust to provincial changes to the Ontario Autism Program.

“Parents were right when they said that autism is a spectrum and that there are different needs for children on the spectrum,” Children, Community and Social Services Minister Lisa MacLeod said Thursday.

“I’ll take their input for the next several months to assess how we better support those with more complex needs and provide additional sources of support for them.”

Laura Kirby-McIntosh, president of the Ontario Autism Coalition -- a group that has led opposition to the government’s changes -- said Thursday’s tweaks, including the six-month reprieve, mean “some members of my community are going to be able to breathe today, and maybe sleep.”

However, she said the government needs to create a needs-based funding model, and she “still has concerns about age discrimination, and the amount of funding” based on age.

Milton mother Maria Garito, whose son Max, 4, started government-funded therapy two weeks ago after waiting for more than two years, was thrilled to learn his long awaited support would continue for another six months.

“It’s a positive step in the right direction,” she said. “I know not everyone will be happy. But I am staying positive that better things are yet to come.”

MacLeod said the province’s focus remains on clearing the lengthy wait list for services, but the new “enhancements” are based largely on suggestions from her parliamentary assistant MPP Amy Fee -- a mother of two children with autism -- who heard families’ concerns and has herself come under fire from the very advocates with whom she used to be aligned.

Under the Progressive Conservative plan, the same “childhood budgets” will remain for those diagnosed with autism -- $20,000 a year for children under 6, up to a maximum of $140,000, and $5,000 a year after that up to age 18 to a maximum of $55,000.

The full amounts will now be available to all families, including high-income earners, and they will be able to spend the funds on additional services such as speech therapy, physiotherapy and occupational therapy that were not a part of the original announcement on Feb. 6.

Speaking in Woodstock, Premier Doug Ford said he was proud of the changes and the investment the government is making.

However, he said, “there’s no silver bullet. If we wanted to fix the problem and you never ever will, let’s be very clear. It will probably cost $3.5 billion to $4 billion. Those are staggering numbers.”

From the day changes to the autism system were announced last month, advocates have warned of drastic consequences for families who would no longer be able to afford behavioural therapy -- which for children with intense needs can cost $80,000 a year.

A huge protest was held at Queen’s Park before the March Break.

The government has budgeted $321 million for autism services for the next fiscal year. On Thursday, MacLeod could not say how much additional money will be put into the system, but that currently the province has spent $331 million.

She said she’ll be consulting with families over the summer on how best to support children with severe needs, and is prepared to spend more on them, but did not elaborate.

NDP children’s issues critic MPP Monique Taylor said the change “absolutely does not go far enough for families and children in this province. We know we will still have families who will continue to struggle, who will continue to not provide services to their children and this announcement does nothing to help that.”

The new system, which comes into effect April 1, is meant to clear a 23,000-child wait list and distribute funding to more families, MacLeod has said.
She said her ministry will eliminate the wait lists over the next 18 months, with a particular focus on kids aged 5 and 17, “to ensure they receive the maximum remaining funding.”

In the wake of the upheaval, layoff notices have started to go out to behavioural therapists across the province as service providers deal with uncertainty under the new program. And at least one community college has suspended its autism behavioural science program, in part, due to the changes.

Kendra Thomson, incoming president of the Ontario Association for Behaviour Analysis (ONTABA), said MacLeod’s announcement is a welcome “pause . . . but doesn’t change the long-term availability of evidence-based interventions for children with autism.”

The jobs of about 1,000 front-line therapists are still at risk in the coming months due to the changes, she noted. ONTABA hopes provincial consultations this summer will include experts who understand the “multi-system issues at hand,” she added.

School boards had been expecting an influx of about 1,000 students with autism into schools as families lose funding and turn to local schools for help, but it appears far fewer will enter the system April 1, given the six-month extension of services.

“This six months does give us the opportunity to figure this out” for the fall, said Cathy Abraham of the Ontario Public School Boards’ Association, in terms of staffing and resources.

“It’s still not a lot of notice, but it’s still a reprieve,” she said, adding schools will wait to hear from families about their plans for April. “But we are happy to hear
that they listened” to concerns, she added.

The union representing public elementary school teachers was less enthusiastic. “The same crisis for school boards and educators will exist in six months if the government does not reconsider providing additional support and front-line resources,” said Sam Hammond, president of the Elementary Teachers Federation of Ontario.

Meanwhile, parents of children with other disabilities wonder when their kids’ needs will be addressed.

“They missed the mark by excluding thousands of children with Down syndrome, cerebral palsy and other disabilities,” said Sherry Caldwell of the Ontario Disability Coalition. “Children with these disorders have needs too and the government should not discriminate based on diagnosis.”

“Our children are not even put on a wait list for therapy,” said the Richmond Hill mother whose daughter Ashley, 13, is non-verbal and relies on a wheelchair for mobility and a feeding tube for liquids. “Kids like her are just forgotten and ignored. How long will we have to wait for support?”