Canadian parents of children with autism say government services are slow to help

From CBC News in Canada:

Parents of children with autism and other pervasive developmental disorders say Quebec's ombudsman has correctly identified the huge gaps in government services for their pre-school-aged children, but they doubt her recommendations will help.

Raymonde Saint-Germain released her report Oct. 8, calling for quicker diagnosis, more support for families of autistic children and more continuity of care.

But some parents say they do not believe the will exists to get their children the resources they need.

Lidia Marandola, who has an eight-year-old autistic son, said she has spent countless hours navigating the system, trying to find out what services he has a right to and where to turn for help.

Parents must tell their story to the local community service centre, then tell it again to the centre de réadaptation, or rehab centre, Marandola said.

"There is a duplication of services," she said. "You enter school — they don't know nothing about you. It's pathetic. I find, for a parent who even tries to go to work, you will get a burnout. I was getting a burnout."

Marandola took issue with Saint-Germain's view that the system can be fixed without an injection of more money.

There is a lack of temporary care for parents looking after high-needs children full time. And the available government support is based on paying a caregiver $3.75 an hour — the going babysitting wage in 1989, she said.

A professor of educational psychology and counselling at McGill, Tara Flanagan, said parents of children with autism and other developmental disorders are given few choices by the school system. She said for teens and young adults, the options disappear.

"If we think of the amount of individuals in this situation who are leaving the school system and going into the community, and what we have for them in terms of service for them, in terms of support, there is a huge discrepancy," Flanagan said.

Society as a whole has to adopt a more open approach to integrating people with autism into the workforce and the community, she said

It's been more than six years since the Quebec government issued a policy on services for children with autism and other pervasive development disorders.

Despite the government's apparent commitment to the policy, the ombudsman's office was swamped with complaints. Saint-Germain said the complaints are warranted.

She said children cannot get services until they have a diagnosis, but the wait to see a psychiatrist trained to diagnose autism can be as long as 18 months.

This means services are delayed, often at a critical time, when the children can most benefit from them. Even when parents have a diagnosis, once their child hits school age, the waiting game may start all over again, she said.

Marandola is one of the 150 parents whose experience the ombudsman drew on in her 18-month study of government services for autistic children under eight years of age.

Saint-Germain said she is committed to following through on her 21 recommendations, all aimed at providing better continuity of care for children as they enter their school years.

She's also promised a study on what happens as children with autism grow up.

Marandola said the ombudsman is sure to get an earful on that topic as well.

"You realize after the age of six . . . these kids have nowhere to go," she said.