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Josh Wingrove,
The Edmonton JournalPublished: Sunday, September 23
EDMONTON
- An influx of hundreds of autistic students to Alberta last year has
put a strain on professionals in the Edmonton area, and prompted an
audit of school programs for students with disabilities.
For the
past three years, Alberta has led Canada in funding for treatment of
autism, a neurological condition that affects one in 150 children. The
result has been a caravan of families moving to Wild Rose Country to
access services for their autistic children.
"It was a huge influx," says Lyn Parker, program director with the Edmonton Autism Society.
Nick Dimovski with his family, from left, Valentina, Zoran, 7, and Goran, 5, who has autism
Shaughn Butts, the Journal
About 30 families with autistic children came to the Edmonton area from Ontario alone in the last year, her numbers show.
It
has been a strain on aides and health workers, lengthening their
waiting lists. Government funding that had been meeting needs hasn’t
kept up, forcing families to pay extra for services.
"The support services for children with autism (are) in great need," Parker said.
Edmonton
public schools, for example, added three classes for autistic children
midway through the last school year, and has three more starting this
fall.
Exact enrolment numbers won’t be available until later this
month, but classes won’t have many more than 20 children. Additional
students will be mainstreamed with the help of aides.
A year earlier, the city’s public schools had only 294 children in classes exclusively for autistic students.
Part
of the draw for families is the coverage available in Alberta for a
widely successful repetitive-learning program that costs as much as
$60,000 each year.
Some provinces — including Saskatchewan, Nova
Scotia and New Brunswick — provide virtually no funding after age six
for the early-intervention program, called Applied Behavioural Analysis
(ABA), leaving families to shoulder the load. In many cases, it means
organizing fundraising events or even remortgaging homes.
Nick
Dimovski, 44, came from Ontario last February with his wife and two
children, including five-year-old Garon, who has autism. Within four
months, his funding arrangements were set up; Garon begins his ABA
treatment here at school this fall.
"So far, we’re extremely
happy," Dimovski says. "We could only ask for the services to be
provided. From there, we’ll see how it goes."
With so many new
students, Alberta Learning will begin an audit of its funding of autism
services next month "to see if in fact all these kids have as severe a
need as the teachers are saying," says Parker, of the autism society.
"This is just going to gum up all of the physicians. We don’t have enough people to do that assessment."
In
Ontario, many parents fled when a lawsuit against the province,
demanding funding until age 18, left government support uncertain.
Parents desperate to get ABA treatment for their kids moved away while
the lawyers worked it out.
"Early intervention is key to acquiring skills. This is why all of the urgency," says Karyn Dumble of Autism Ontario.
Many moved to Alberta because of "the perception that there were more services for their kids," Dumble said.
The province won the case last fall, but the Ontario government
ignored the ruling and agreed to continue funding after age six. That
slowed the exodus to Alberta, but services here still face hundreds of
clients they didn’t have last year.
Under the Alberta funding
scheme, families choose the service provider that works best for their
child (there are five major ABA providers in Edmonton). Parents bill
Alberta Children’s Services, and are fully reimbursed for most
treatments. Occupational therapy, respite care and speech and language
pathologists — even car mileage — are also paid for.
"One of
the strengths here is that families have a lot of choice when it comes
to treatments for their children with autism," says Dr. Lonnie
Zwaigenbaum, one of Canada’s foremost experts on autism, who himself
came to Capital Health from Ontario in May.
"Sometimes the limiting factor is finding the right therapist."
Funding
comes from Support for Families with Children with Disabilities, an
Alberta program introduced in 2004 that has a $101-million budget this
year. About quarter of the children it serves are autistic.
According
to a Senate report this year, continued intervention and treatment are
the keys to creating independent and functioning autistic adults.
Families
that don’t move to a province with better funding are forced to
shoulder the cost of early intervention treatment themselves.
"People
have gone basically bankrupt as a result of this," says Michael Lewis,
president of the Autism Society of British Columbia.
B.C.
families get $20,000 a year until age six, and $500 a month after that.
But in many cases, families need full-time specialists, at a cost far
higher than the monthly stipend.
"There are families that are
making very good money and have remortgaged their homes to provide
services for their child to be the best they can be," adds Tim Verklan,
president of SASKFeat, Saskatchewan’s autism society.
His son
Joel, 11, was diagnosed eight years ago. Unlike other Saskatchewan
families who jumped across the provincial boundary, Verklan chose to
stay and run the family business, flying in specialists from Nevada at
his own cost.
"Honestly, I think in hindsight we made the wrong
choice," he says. "We should have taken the step and moved, and
unfortunately we live with that decision.
"I know we’ve lost people in Saskatchewan to Alberta, because it’s the best thing for your family."
The
Autism Society of Canada is pushing for a national strategy on autism
to guide research, co-ordinate services and standardize programs and
credentials.
"I’m sure every parent and every person with autism
would wish the government would take a serious look at the issue," says
Sandra McKay of Autism Society Canada.
Funding in the U.S. is
co-ordinated under federal law. In Canada, federal government action,
except for the non-binding Senate report, has been limited.
"We
have an increasingly large group of children who are not having their
core health-care needs addressed in this country, and I think that is
absolutely unacceptable," says Lewis of Autism B.C.
"And I think any government that doesn’t do anything about it doesn’t deserve to be our government."
Other provinces are catching up to Alberta.
Treatments
for autistic children in Yukon now extends until age 18. In August,
Ontario announced $12 million in new funding for autism treatment,
which should take 210 children off an ABA wait list.
Even
Saskatchewan, which trails far behind the other western provinces in
autism funding, announced $3 million in specialist training this year.
But Verklan says it’s not nearly enough, especially when his home is
only 400 kilometres from a province where nearly everything is covered.
"I give Alberta a ton of credit, because they’re doing the right thing, the human thing to do. It’s ethical," he says.
"And unfortunately, the rest of the country isn’t doing it."
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© The Edmonton Journal 2007
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