Lack of autism funding called discriminatory - Parents hope civil suit leads to full funding for intensive therapy

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Apr. 28, 2003. 04:08 PM

Lack of autism funding called discriminatory
Parents hope civil suit leads to full funding for intensive therapy
 

 

COLIN PERKEL
CANADIAN PRESS

The Ontario government's failure to properly fund an intensive therapy for all children with autism is discriminatory and violates the principles of medicare, a civil trial heard today.

 

Parents from 28 families whose children have the brain disorder are suing the province to force it to pay for the treatment after the child reaches the age of six.

"It is a neurological defect," lawyer Paul Mann said in opening statements to the Superior Court of Justice. "It is a disease."

 

Mann, who represents one family fighting a separate suit that is being heard along with the others, began his case by outlining the gut-wrenching story of a Toronto couple, Dr. Steven Deskin and his wife Brend.

 

Mann recounted how the Deskins' joy at the birth of their healthy seven-pound, 11-ounce boy Michael in 1995 slowly turned to anguish and despair as they gradually realized something was wrong with him.

 

For more than two years, doctors and others reassured them that Michael was simply a bit slow, that he was "a late talker" as boys often are.

 

Finally, at age three, he was diagnosed with autism, a poorly understood disorder characterized by a failure to communicate, difficulty in learning and self-stimulating or aggressive behaviour.

 

To date, the Deskins estimate they have spent more than $600,000 trying to keep Michael, now eight, in therapy.

 

Other parents recounted similar stories of extreme financial and emotional hardship for themselves and their families.

 

Many experts believe the intensive and exhausting one-on-one therapy, which can cost as much as $75,000 a year, is the best method of ensuring a reasonable degree of normal functioning for autistic children.

 

They also argue it is more cost-effective than institutionalizing children for life.

 

The therapy, variously known as applied behavioural analysis or intensive behaviour intervention, is deemed most effective between the ages of two and five.

 

While the provincial government began a funding program in 2000, it does not pay beyond age six. Hundreds of children are also on lengthy waiting lists for assessments.

 

"The whole program was negligently conceived and carried out," Mann said outside court, comparing it to cutting off chemotherapy for a cancer patient. "What do you do? Dig yourself a grave?"

 

Suzanne Wetszel, who came from Sault Ste. Marie, Ont., for the opening of what is expected to be a four-month trial, said her nine-year-old autistic son Sebastien is in therapy.

 

"My husband and I both have decent jobs but we are considerably in debt," she said. "The child turned six years and as a birthday present, they cut him off (from funding)."

 

Robert Charney, the lead lawyer for the province, refused to discuss the case. However, the government has previously insisted its funding for autism therapy is unsurpassed in North America.

 

The government says it will provide up to $100 million a year by 2006-07 for autism, which amounts to "an unprecedented funding commitment."

 

The trial before Justice Frances Kiteley continues.

 

Last month, the New Brunswick Autism Society protested what it called a lack of funding from the province for people with the affliction.

 

Last year, a court ordered the British Columbia government to fund intensive behavioural intervention for all children who need it, regardless of age.

 

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