Canada

Top court halts parents' autism funding appeal

Posted: April 12, 2007
Last Updated: April 12, 2007

The Supreme Court will not hear arguments on the matter of who should pay for costly specialized treatment for autistic children in Ontario.

The court's decision Thursdayhalts the lengthy legal challenge of28 Ontario families with autistic children whoargued the province was discriminating against autistic children and should pay for intensive behavioural intervention therapy (IBI), as well asprovide it in schools.

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The families initially won a court ruling over government financing forthetherapy, but the decisionwas overturned by the Ontario Court of Appeal in 2006.

The familieshavesaidthe expensive treatment can eat up an entire year's salary and should not be a crippling financial burden. Private therapy costs between $30,000and $80,000 a year for one child.

The Supreme Court gave no reasons for its decision, which is customary in leave-to-appeal rulings.

The families will now fight tokeep the political pressure on the Ontario government until it changes its policyand offersIBI in schools, saidToronto lawyer Mary Eberts, who represented the families in the case.

"We had hoped that we would have another crack at the courts recognizing that these children actually have constitutional rights," Eberts told CBC News Online Thursday after the court's decision.

"It's frustrating,"said Tammi Starr,one of the parents involved in thechallenge, who pays for private therapy for her 12-year-old autisticdaughter, Carly Fleischmann.

"She was about four when we started [the legal challenge],"Starr told CBC News Online Thursday.

Carly also hasoral motor apraxia, a neurologically-based speech disorderthat limits her ability to formwords. She used to attend a regular school, but her mother said it was clearthe mainstream classes weren't working.

"It was a disaster,"Starr said. "We pulled her out of there."

Since Carly started working with a specialized private teacher and using a laptop to communicate,she has undergonea transformation in the eyes of her parents and the increasing number of people she is able to share her thoughts and feelings with —from heradmiration of Brad Pitt to her desire to become a cook when she grows up.

"The wall between her and us is breaking down," Starr said. "She's giving us great insightinto who she is."

'Tremendous concern'

Last year, Ontario removed the age cap of six yearson its Autism Intervention Program to help families pay for IBI, but about1,000 children are still on the waiting list. Some have been waiting for treatment funding for years, forcing parents to pay out of their own pocket.

"Unless you have staff who are trained in these specific programs in place, these kids aren't going to learn properly," Margaret Spoelstra, executive director of Autism Ontario, told CBC News Online Thursday.

As autistic childrengrow older, theybecome increasingly dependent onaging parents unless they are giventhe survival tools thatprograms such as IBI provide, she said.

"This causes tremendous concern for the families," she said. "The battle they’re struggling with is one for a lifetime."

The ordeal is even worse for single parentswith autistic children as they struggleto fulfil dual rolesofsolitary earner and care-provider, Spoelstra noted.

In February, Ontario promised to boost spending on a program to provide therapy by $13 million, increasing total spending on autism to $115 million a year.

Another kind of treatment

Ontario Education Minister Kathleen Wynne hassaid the province is working on a plan to roll out another kind of treatment, Applied Behaviour Analysis, in schools across Ontario, while IBI therapy would be used outside the school setting.

But Eberts said the parents have been faced with a "policy wall" by a government that is set against offering IBI in schools,where trained teachers can work with children to develop cognitive, behaviouraland social skills, as well as communication.

"It needs to be in schools," Eberts said, dismissing the province's ABAplan as "a wishy-washy approach that’s offered by people with no training."

"They’re not offering the genuine article."

A Senate committee last month recommended that Canada develop a national plan to deal with autism, including new measures to help families saddled with huge bills for therapy.It alsocalled for a federal-provincial-territorial conference to decide how much money Ottawa should contribute to the campaign.

There are almost 50,000 children and 150,000 adults with autism in Canada.

With files from the Canadian Press