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

The Quebec government will invest $29 million annually in services and programsfor 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 programwill prioritizeincreasing services for preschoolers and nearly halving the current wait times for behavioural therapy.

• Quebec families turn to private autism therapies at staggering cost

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, whichcomes more than a year afterCharleboisorganized 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.

• What is ABA therapy for autism?

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.

An additional $11 million, separate from Wednesday's announcement,will be devoted to that goal, Charlebois said later in the day.

The increased funding to pay for therapy for preschoolers iswelcome news forMyra-JadeLui, 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, Luisaid, 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.

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

"There's a big, big body of evidence" to support that, Luisaid. "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.

AnnaBisakowski'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-Philippdid 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," saidBisakowski.

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

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

Aiblinger and her familylivein 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'sno 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.

• 'We've had enough': Quebec parents of autistic children form united front to call for better services
• Mother blames loss of publicly funded autism therapy for sending 5-year-old into tailspin

'Step in the right direction'

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. Hesaid he's optimistic there will be more money for special services for school-aged children, through the Education Ministry.

He also welcomed the government'srecognitionof the need for "lifespancare" for adults with autism.