Autism – Support for Families

Last week, an Ottawa couple made a heart wrenching decision after 19 years of intense stress and worry for their autistic son’s safety. Amanda Telford and Alex Chiasson decided the time had come to give up the fight. Philippe is non verbal. He wanders, slipping out of the house only to be found hours later and kilometres from home. He has diabetes, and the inside of his home is fraught with danger. Imagine what it must be like for his parents.

They made a desperate decision. With the sleepless nights and the diminishing of their own health, the full weight fell on their soldiers. Last Wednesday, this couple dropped their son off, perhaps forever, at a developmental services office right here in Ottawa, and the family’s private torments become public.

Honourable senators, this is happening all across this country. There are tens of thousands of families trying to find and pay for care for their adult children with autism spectrum and other disorders. The Ottawa Citizen reported that 12,000 families in Ontario alone are currently waiting for some kind of supported living accommodation for their developmental disorders.

Granted, the government has put together a national surveillance program, which is in the early stages, and there is a research chair at York University. However, it is not enough. We need more to be done. Here in the Senate, as we all know, six years ago, in 2007, we had a report, Pay Now or Pay Later: Autism Families in Crisis . Every autistic family in this country wants an autism spectrum disorder strategy. We have one for diabetes, for cancer, for mental health, for heart disease. Where is our strategy for ASD? The federal government has yet to invest and it needs to invest in our best hope. We have this option. The report was called Pay Now or Pay Later: Autism Families in Crisis, as I said. The “pay later” time has already come.

The latest news on Philippe is that the Ministry of Health in Ontario have joined social services to devise a solution that meets his distinct needs, but there must be a national solution, Phillip’s mother sees the model here as one to be used across the country. In her words, it is not rocket science. It should have been available right from the get go. That really says it all. Our hearts and thoughts are with Amanda Telford and her husband.