Advocates call for more help for autism – Ontario/
August 30, 2010.   Megan Ogilvie, HEALTH REPORTER

Parents of children with autism continue to struggle with long wait lists, gaps in services and no guarantees for therapy — despite efforts by the province to repair the patchwork system.

Since 2003, the Ontario government has increased spending on autism from $44 million to $165 million and implemented new support services for families, including school and respite programs.

But parents and advocacy groups say the province’s efforts are not enough; too many children still spend too long waiting for care.

“It’s very difficult for parents to navigate and find what the right services are, and there are long waiting lists. That’s just a reality,” said Peter Moore, executive director of Kinark Child and Family Services, a children’s mental health centre whose programs include services for kids with autism.

“It (mental health and developmental disability) is not getting the kind of attention it should get. We often say, ‘If a child has a broken arm, would they wait three months to get a cast? Of course not. But a child with a mental-health problem may wait that long before they get the right service.”

As of March 31, there were 1,520 children with autism on the wait list for intensive behavioural intervention therapy, a proven strategy that works best in the preschool years. A further 310 kids were waiting for assessment and 1,298 had completed assessments. At that time there were 1,428 children receiving treatment.

Susan Fentie-Pearce, co-founder of Ontario Autism Coalition and mother of four boys, two with autism, went to her MPP, Greg Sorbara, for help getting her youngest son treatment. She is now demanding an apology, claiming that Sorbara suggested she should have Keith, who has become increasingly violent, charged with assault so a judge could order better treatment for him, or that she sign custody of him over to the Children’s Aid Society.

Sorbara said his comments were misinterpreted and there is no need to apologize.

“The only way you can get immediate access to a residential facility is for a judge to order it. That could be a criminal court judge or it could be a family court judge through Children’s Aid, but I can’t make an order,” Sorbara told the Star.

Sharon Aschaiek, a leader of the family lobby group Autism Resolution Ontario, says she has heard of parents giving their children up to Children’s Aid to help them jump queues up to five years long for government-funded programs.

“We know kids who are in Children’s Aid are likely to get placed into some sort of institution where they can get help very quickly,” says Aschaiek, mother of an autistic son who waited 26 months for government-funded treatment.

“They (parents) understand that the wait lists are not going to disappear and that children in Children’s Aid have much faster access to the kind of care they would need.”

On Aug. 26, a select committee of the Ontario legislature released 23 recommendations for improving mental health treatment and care. The report stated that people with autism have no real place in the system.

Children and Youth Services Minister Laurel Broten said the ministry’s regional offices work with families to ensure they get supports.

“We have been clear, I have been clear, on many, many occasions that we are not telling parents and suggesting to parents that the route to receive services is to relinquish care of your child to the Children’s Aid Society,” Broten said.

“We’ve increased the availability of services and doubled the amount of kids who are now receiving IBI. But at the same time we know that there has been a high increased prevalence of diagnoses of autism spectrum disorder.”

Over the next year or two, she said, the province plans to expand services for a broader range of autism spectrum disorders.

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