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CBC Montreal - 'It doesn't help with anything': Quebec autism plan leaves parents in despair

CBC Montreal - 'It doesn't help with anything': Quebec autism plan leaves parents in despair

$29M plan prioritizes increased applied behavioural therapy services for pre-schoolers

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The Quebec government will invest $29 million annually in services and programs for people with autism over the next five years, as part of a long-awaited provincial plan announced Tuesday. 

Quebec Public Health Minister Lucie Charlebois said the program will prioritize increasing services for preschoolers and nearly halving the current wait times for behavioural therapy.

However, for parents of school-aged children who have been pleading for government-funded therapy to continue once their children start kindergarten, the plan comes as a colossal disappointment.

What's in the plan?

In the plan, which comes more than a year after Charlebois organized an autism forum with experts and advocates, the government has earmarked more than a third of its funding — a total of $11.2 million — specifically to increase services for patients under five, which will include applied behaviour analysis or ABA therapy.

The government also intends to eliminate waiting lists for families or community organizations applying for financial support and to increase social and professional services for adults with autism.

autism press

Quebec Public Health Minister Lucie Charlebois promised a new autism plan more than a year ago. She unveiled it Tuesday, accompanied by Health Minister Gaétan Barrette (right) and Education Minister Sébastien Proulx (centre). (Alexandre Letendre/Radio-Canada)

The increased funding to pay for therapy for preschoolers is welcome news for Myra-Jade Lui, vice-president of the Quebec Association for Behaviour Analysis.

However, Lui said, it will be a major challenge for the government to end the lengthy waiting lists for preschoolers while maintaining a high standard for those services.

Early intervention ends at 5

Perhaps most critically, Lui said, the money spent on therapy for children with autism before the age of five will be wasted if there is no continuity of services after those children start school.

Myra-Jade Lui

Myra-Jade Lui, the vice-president of the Quebec Association for Behaviour Analysis, said money spent on preschool therapy will be wasted if that therapy doesn't continue into the school years. (CBC)

"Behavioural interventions are not just for zero to five," she said.

"There's a big, big body of evidence" to support that, Lui said. "It is important to address this."

"It certainly doesn't help any of the families now who have had that intervention [before their child turned five] and are now looking for others to continue that work."

'They seem to think that at five years old, everything ends. They go to kindergarten and everything is wonderful, because they got early intervention.'- Anna Bisakowski, mother of Simon-Philipp, 5.

Anna Bisakowski's son, Simon-Philipp, 5, is a case in point.

Bisakowski is paying $2,000 a month out of her own pocket to get one-on-one ABA therapy and speech therapy for her son. She said he also requires occupational therapy, but she can't afford to pay for it.

Simon-Philipp did receive ABA therapy until the government cut off those services when he started kindergarten.

"They seem to think that at five years old, everything ends. They go to kindergarten and everything is wonderful, because they got early intervention," said Bisakowski.

"They're kind of missing the point. After five, the kid still needs therapy."

Mandy Aiblinger, Viktor and Emmett

Mandy Aiblinger says she and her sons Viktor, 8, (middle) and Emmett, 5, may have to move to Ontario so Emmett can get the autism services he needs that aren't available in Quebec once children reach school age. (submitted by Mandy Aiblinger)

Mandy Aiblinger's son Emmett, who is also five, has never received any therapy at all.

Aiblinger and her family live in the Eastern Townships, where she says autism services are extremely limited.

Emmett, who will soon turn six, is followed by a child-care aide the three hours a day he is in school, but he's received no special therapy.

"There's no services in the school, and that's what a lot of people need — including me, including my son," Aiblinger told CBC. "He needs occupational therapy and speech therapy."

Paying for those services, she said, can run up to $120 an hour, and she doesn't have the means.

"If nothing changes … I will have no choice but to move to Ontario," she said, even if it means leaving behind the family and friends who are her and Emmett's support system.

'Step in the right direction'

Warren Greenstone

Warren Greenstone, president and CEO of the Miriam Foundation, calls the autism plan "a step in the right direction." (CBC)

Still, the plan is "a step in the right direction," said Warren Greenstone, the president and CEO of the Mirian Foundation, which offers private programs for children with autism. 

The foundation had urged the government to inject an extra $60 million annually to keep up with the growing demand for autism diagnoses and services. 

"Time will tell how it disseminates through the system," said Greenstone. He said he's optimistic there will be more money for special services for school-aged children, through the Education Ministry.

He also welcomed the government's recognition of the need for "lifespan care" for adults with autism.

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