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Friday 30 March 2001
In east end,
parents fill health gap
JANE DAVENPORT
The Gazette
Josee Primiani's daughter Sabrina is nearly 8 years old and has spent half her life on waiting lists.
She has waited for appointments. She has waited for assessments. And most of all, she has waited for therapy.
"I remember how many times I cried myself to sleep, because I didn't know where to turn," Primiani said yesterday.
Sabrina's specific condition has never been diagnosed. Her fine-motor skills are not fully developed. She has a learning disability.
And although Sabrina speaks today, at age 4 she was still non-verbal.
For Primiani, the difficulty in getting help for her daughter went beyond what has recently been denounced as the chronic underfunding of Quebec support systems for parents of disabled children.
Like the parents of at least 39 other children living in the east of Montreal Island, Primiani faced the additional hurdle of obtaining therapy for her child in English.
"It's a double whammy for people who are English in the east end," Equality Party president Jimmy Kalafatidis said.
Kalafatidis's 3-year-old son suffers from a speech disorder called dysphasia. His family lives in east-end Montreal.
The waiting lists for children who need speech- or occupational-therapy programs in any language can stretch as long as two years in Quebec, Primiani and Kalafatidis hastened to point out yesterday.
The Equality Party recently passed a motion demanding that "the Quebec government provide the proper funding for children with autism and developmental disabilities, and these services should be paid for by medicare, with no discrimination based on language, ethnicity, race or sex."
But in the east end, public therapy services offered in English are scarce - and the waiting lists longer still.
Parents who would willingly dip into their own pockets if necessary have trouble finding even private services offered in English, Kalafatidis said.
And so in 1999, a group of parents fell back on their own resources and created the EAST Foundation.
Why the foundation is a success story: it now provides affordable weekly speech- and occupational-therapy sessions in English to 39 east-island children with a wide range of disabilities.
Why it's also a sad story: it's financed exclusively through the fundraising efforts of parents desperate for services for their children.
St. Leonard resident Katherine Timotheatos has spent $15,000 on therapy for her autistic son, Stefano, in the last nine months.
She pays $80 an hour for speech therapy for her son. She pays $15 to $20 an hour for 10 hours a week of intensive behaviour therapy.
She has waited for access to services from her local readaptation centre - which would provide some portion of the therapy for free - since January 2000. And every month, she gets a cheque from the provincial government for $119.
The way she sees it, she is investing in her son's future. And the province, she argues, is not.
"It's ridiculous that the government isn't putting a little bit more money in early on, where it's proven that an intense therapy could help the child function perfectly well," she said.
"Everybody keeps mentioning, 'The younger, the better.' "
While she waits, there is a modicum of relief. Stefano gets half an hour of occupational therapy and half an hour of speech therapy at a reduced rate from EAST
It's not a lot, but it helps.
EAST services are financed on a budget of about $40,000, Primiani said. Much is riding on a dinner-dance fundraiser planned for April 7.
"If fundraising doesn't work, the services will just stop," Primiani said. "The little amount of money we have received, we've made it go so far.
"Imagine what we could do if we had half a million or a million dollars."
But the disparity between funding for children with disabilities in Quebec and in other provinces means that a much greater injection of funds than that would be required to achieve parity.
Funding allocated for children with autism is one concrete example. Ontario invests $16 million annually in a program that provides 20 to 40 hours a week of intensive behavioural therapy - also known as applied behaviour analysis, or ABA - for children with severe autism.
ABA is a type of therapy with such a high success rate that the British Columbia Supreme Court has ruled it a medical necessity for children with autism. B.C. has announced $20 million in funding for intensive behavioural intervention programs this year.
By contrast, in November Quebec announced $5 million would be earmarked in equal portions for therapy for children with speech disorders and therapy for children with autism.
Last spring, Pauline Marois, then health minister, announced an additional $8 million in funding for centres for the intellectually handicapped and urged them to put an emphasis on autism, said Peter Zwack of the Quebec Society for Autism.
"Some did and some didn't," he said.
For children with autism and speech disorders, early intervention is crucial, and can lead to remarkable improvements.
Timotheatos has chosen to buy precious time with her own money, but she worries for other children.
"It's the worst part as a parent," she said. "It's like having a child with cancer, and you know there's something that could help, but only people who can afford it can get it, and everybody else has to wait."
The stories of children like Stefano and Sabrina and their parents are especially poignant in the light of the death last week of 14-year-old Chelsea Craig, a severely handicapped child whose mother faces a charge of first-degree murder in her death.
Although it is not known precisely what level of institutional support the Craig family was receiving before the tragedy, there has been a stream of uneasy speculation since Chelsea's death that it probably wasn't enough.
Many parents have since spoken out strongly about the daily stress of coping with a handicapped child, and criticized the underfunding of systems designed to assist their children.
"Although we would never condone an action like that, we can certainly sympathize with the lady's pain," Primiani said.
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