As the government puts the finishing touches on its long-awaited autism action plan, the Quebec Association of Behaviour Analysis (QcABA) is worried services may be watered down to save money.
The QcABA promotes the use of applied behaviour analysis, or ABA, which is considered by many researchers and clinicians to be the most effective therapy for children with autism. It is widely used across North America.
The action plan is supposed to reduce wait times for diagnosis and therapy, as well as improve funding options for parents.
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The QcABA is concerned the government may be looking at including cheaper, more generalized autism programs such as social skills groups or play therapy, which are usually less intensive.
They also require less professional training, said Myra-Jade Lui, the association's vice-president.
Lui and her group recently met with Public Health Minister Lucie Charlebois to voice their concerns.
Lui also wants the government to impose minimum standards to ensure the people who supervise ABA programs have the right qualifications and training.
"It's kind of terrifying to think that the people in charge of that might not even have one class in ABA," she said. "You'd never want your doctor to be someone [who] didn't go to medical school."
Need for 1-on-1 therapy
ABA programs are typically drawn up according to each child's needs and involve intense one-on-one therapy, designed to teach language, communication and interpersonal skills to help children integrate into school.
It's still unclear exactly what services the government will offer, but Lui said her association wants to make sure the government clarifies what ABA is and what parents should expect to see practised.
Many of the clinics and people who offer ABA therapy aren't following best practices, said Lui. Although it's recommended parents choose behavior analysts who are certified, it's not mandatory in Quebec. The QcABA says that's led to many businesses popping up that claim to offer ABA services without properly trained therapists or supervisors.
"Can we at least make sure that we're offering what we say we're offering," said Lui, who has seen both public and private centres fall short of the mark.
Action plan may be delayed
Charlebois held the first ever Quebec forum on autism last February, to hear people's concerns and to identify priorities.
Following that, an action plan was promised which was expected to be ready earlier this fall. It was then pushed back to the end of the year.
Lui said the minister now says there is still a lot of work left to do.
"She did say it's a huge file, and they'd like to do it right," said Lui, saying that leaves her group hopeful.
Earlier this year, Ontario set the bar high, committing $333 million over five years for autism programs.
Their new plan will provide all children, regardless of age, with more flexible services and shorter wait times for diagnosis and therapy. It also increases the number of treatment spaces.
Until children get a spot in the public system, parents are paid directly to defray the costs of private therapy.
Lui would like to see an ambitious plan like Ontario's here in Quebec.
Right now in the Montreal area, many children can wait up to 12 months in the public system to be diagnosed and up to two years to get government-funded services.
For children diagnosed with autism between the ages of two and five, Quebec now pays for 20 hours a week of ABA therapy.
Research shows early intervention is key, so while they wait for a spot, many parents who can afford it turn to private therapy, which can cost thousands of dollars a month.
In the 2016-2017 Quebec budget, $5 million was set aside to improve services for people with an autism spectrum disorder.
"The government just announced they had a $2.2 billion surplus in Quebec last year, and $300 million is going toward health care," said Lui.
Lui doubts enough money will be set aside for autistic children and says she's worried families will once again be shortchanged.