City of lost children

>> Red tape obstructs access to therapy for autistic children

by GEORGE MADDUX

A year ago Jimmy Kalfatidis noticed that his two-year-old son was entirely unbothered by loud noises. Neurologists declared the boy in need of immediate special care for what might be autism. They talked of Lovass, a promising therapy recommended by the Collège des médecins du Québec in 1996, which claims to turn half of its subjects into normally functioning individuals while sparking massive improvement in the rest.

That's when Kalfatidis learned of a bureaucratic quagmire involving waiting lists, unsubsidized and inaccessible services that are particularly vexatious for East-End anglos. To get minimal treatment, the family has to drive miles to a costly speech therapy clinic in Montreal-West. "We can only afford to bring him once a week," says Kalfatidis. "We fear that it's not enough and he could be scarred for the rest of his life if he doesn't get the proper attention now.

"Sure it could cost the government $40,000 for two years, but he'll grow up and pay taxes. If he doesn't get it, he'll be dependent for 67 years on the state," he says. Kalfatidis, also president of the Equality Party, has started fighting for better public therapy for the intellectually handicapped. "Funding this treatment is the logical long-term solution but I guess they don't win elections with long-term thinking."

Katherine Commodari, the mother of an autistic four year old, learned that access to therapy is independently ruled by an often inflexible bureaucracy in five arbitrarily mapped island zones. St-Leonard officials put her child on a two-year waiting list while other children went ahead. As a result, she says, over the last two years she has spent $50,000 for therapies offered to others for free. Although costly, and involving large amounts of westward travel, she says the treatment has seen her child go from "severely" to "lightly" autistic. "But why should some people get it for free while I could end up having to sell my house to get the same treatment?" Commodari asks. "If we lived two miles west of where I live, we'd have received far better treatment."

In contrast, several provinces offer unlimited, free Lovass therapy, while others give up to $40,000-worth a year. But Quebec gives Commodari a monthly child disability cheque of $119. "It's nothing," she says. "That pays for an hour and a half of speech therapy."

CLSC social worker Carmela Piazza first discovered the inequities of the system when presented an English, three-year-old autistic child from the East-End who had gone 18 months without any therapy and had started regressing. "I thought I'd make a few phone calls and things would start happening for her," says Piazza. "After seven months of making three phone calls a day, the child was always turned down because of being English or because of where she lived."

Such bad bureaucracy weighs heavily on already overburdened parents. "There's too much pressure and stress put on these parents. It's not just worrying about the child's future and disability, but also fighting all the way for services." Piazza says that it can lead to such results as seen in the case of Chelsea Craig, the recently deceased mentally disabled teen from the West Island, allegedly poisoned by her mother. "I'm surprised it doesn't happen more often." :

Piazza's EAST organization is holding a fundraising dinner on April 7 in Rivière-des-Prairies. Call 323-9950