Quebec government to announce long-awaited autism plan

It's been a long wait but Quebec Public Health Minister Lucie Charlebois will finally unveil the government's autism action plan this morning.

Parents and autism advocates trying to stay optimistic, but worry Quebec's plan won't be enough

Tina Chapman said her son Blake had less than a year of publicly funded therapy before he became too old to be eligible. (CBC)

It's been a long wait but Quebec Public Health Minister Lucie Charlebois will finally unveil the government's autism action plan this morning, alongside Health Minister Gaétan Barrette and Education Minister Sébastien Proulx.

The announcement comes more than a year after Charlebois organized a forum with autism experts and advocates to discuss what the priorities will be.

A major complaint among parents and experts is the long waiting times both for children with autism to be diagnosed and then to receive services.

"Best case scenario is they cut down the wait times," said Tina Chapman, a spokesperson for the Autism Alliance of Quebec, a group of parents fighting for better services for children with autism.

She would like to see the government give families direct funding to pay for access to private therapy until a public spot becomes available.

As it stands now, some children never get a spot. In Quebec, government-funded therapy is only available for young children until the age of five or when they start kindergarten.

That's what happened to Chapman's son Blake, who had his therapy cut off last September when he started kindergarten.

In February, the Autism Coalition of Quebec demanded that Quebec immediately table a plan to help children with autism. (CBC)

Blake struggled to cope without it, even with a full-time aide to support him in class.

Chapman said she would also like to see publicly funded therapy extended to school years and for the government to recognize autism as a lifelong condition.

"Some children depend on their parents until their dying days," said Chapman. "Once they are gone, there is no backup or support from the government."

Playing catch-up

The Miriam Foundation is one of the organizations that provides private programs for children with autism, but not everyone can afford it. Some parents have had to mortgage their homes to pay for private therapy, said foundation CEO Warren Greenstone.

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

"This has been lagging behind for so long," said Greenstone. "It needs that kind of investment to correct what hasn't been done for all these years."

Quebec Minister for Rehabilitation, Youth Protection and Public Health Lucie Charlebois promised a new autism treatment plan at a forum in February 2016. (Jacques Boissinot/Canadian Press)

In other provinces, governments provide funding to families so they can access the autism services directly.

The foundation recently launched a letter-writing campaign calling on Quebecers to take action by contacting elected officials. More than 12,000 letters have been sent to Charlebois to date, said Greenstone.

He is worried by rumours Quebec will spread its funding over a five-year period. 

"It's less of a commitment," said Greenstone. "It needs an investment now, not an investment dragged over so many years. I am concerned they will do a little bit now, maybe slowly, then build it up." 

Watered-down program

With so many groups to please, Marc Lanovaz, an autism expert at the University of Montreal, is expecting Quebec's action plan will fall short.

"I have to be honest with you, I'm sceptical, "said Lanovaz.

A donor is now paying for Blake, who has autism, to get therapy once a week after his publicly funded therapy was cut last summer. (Submitted by Tina Chapman)

Many schools in Quebec are now overwhelmed and don't have the resources needed to help children with autism, said Lanovaz. He would like to see stricter guidelines on what programs can be used in schools.

"Right now, it's just a mishmash of just about anything," said Lanovaz. "Some schools are implementing things that are not recommended."

He's concerned the government may offer cheaper, more generalized autism programs such as social skills groups or play therapy, which are usually less intensive, in order to save money. They also require less professional training.

Lanovaz promotes the use of applied behaviour analysis, or ABA, which is considered to be an effective therapy for children with autism and widely used across North America. With Quebec's new plan on the horizon, he's concerned the government may push for parents to get training themselves so they can act as their child's therapist — another cost-cutting measure.

Tina Chapman said that's a huge mistake because while parents are experts in their own child's needs, they can't be both parent and therapist.

"It's not going to work," said Chapman. "We can't do both." 


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