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, alongside Health Minister Gatan Barrette and Education Minister Sbastien 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.

• 'We've had enough': Quebec parents of autistic children form united front to call for better services

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.

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."

• Private donor steps up to pay for Quebec boy's autism therapy

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."

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.Morethan 12,000 letters have been sent to Charleboisto 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."

• CBC INVESTIGATES |Quebec families turn to private autism therapies at staggering cost

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.

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.

• Mother blames loss of publicly funded autism therapy for sending 5-year-old into tailspin

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."