When his son was first diagnosed with autism spectrum
disorder (ASD) at the age of three, Michael Lewis was
told his child might never talk, much less go to school.
Now in grade five in a regular
classroom, the boy is a busy 11-year-old. He bikes,
skis, swims and even plays clarinet in his school orchestra.
He's also, "an active participant in family life," says
Mr Lewis, who also serves as the President of the Autism
Society of British Columbia. "Whatever we do, he's part
of it."
Last November, Mr Lewis was flabbergasted
when the Supreme Court ruled that British Columbia doesn't
have to pay for a treatment known as Applied Behavior
Analysis(ABA, also called IBI or Intensive Behavioral
Intervention) despite its palpable benefit for autistic
kids. Mr Lewis credits this treatment with giving his
son the chance at a pretty normal childhood.
TWO
COURTS, TWO DECISIONS
The Supreme Court's decision hinged on the idea that
healthcare, including ABA/IBI therapy, is a matter of
provincial jurisdiction — thus the provinces have
the right to prioritize spending. But to Mr Lewis, the
decision sent another message. "My child's right to
be a productive citizen was denied," he says. "Universality
is not what I thought it was."
A recent case before the Superior
Court of Ontario took a very different approach to treatment
funding than the Supreme Court. In his ruling in early
February, Justice Lee Ferrier cited fair access to education,
rather than healthcare, as justification for government
funding, finding that ABA/IBI treatment for three autistic
children in Ontario was essential to their thriving
in school.
This treatment doesn't come cheap.
Mr Lewis estimates the annual cost of his son's therapy
between $25,000 and $30,000. For some families, the
price tag is as high as $60,000 a year.
But if his son's treatment was
stopped, Mr Lewis is convinced the child would need
to be institutionalized, possibly immediately. "If not
now, then shortly," he says. "Why should a parent have
to bankrupt themselves? Unless you're making a serious
salary this is a huge burden."
LOCATION
IS EVERYTHING
The amount of available government funding for autism
treatment varies widely from province to province. In
British Columbia, for instance, Mr Lewis' son qualifies
for $6,000 in annual government money. Until the age
of six, the province will pay up to $20,000. In Ontario,
by comparison, funding is only available until the age
of six, and then only after approval by a provincial
board.
Margaret Spoelstra is executive
director of Autism Society Ontario. She estimates that
only about half of the families who apply for funding
in the province are ultimately approved. And of those
whose children are approved, many spend crucial months
or years waiting for a coveted spot to open up in a
treatment program. Ms Spoelstra said it is not unheard
of for a child to turn six, therefore being disqualifed
for funding, without ever seeing the end of the treatment
queue.
Two of Claudio Del Duca's three
sons are autistic. Gabriel, aged 13, and Raphael, 11,
were each around three years old when they were diagnosed.
At that time, ABA/IBI treatment was not readily available
in Windsor, where the family lives, so Mr Del Duca,
now president of Autism Society Ontario, and his wife,
Michelle, did their own research, eventually adopting
a system that employs picture symbols to communicate.
Today, both boys go to public school,
and have education assistants to help them with certain
tasks.
Mr Del Duca says that ABA/IBI is
not a silver bullet. Instead, he wants to see a government-funded
program put in place that includes ABA/IBI, but is customized
to fit the needs of each child.
"What Ontario needs is an integrated
system," he says, "one that covers zero to 18 or zero
to life."
According to estimates from Autism
Society Canada, around 200,000 Canadians have some form
of ASD. And it looks like the public is concerned —
according to an Ipsos-Reid survey released late December,
89% of Canadians think their provincial government health
plan ought to cover the costly ABA/IBI treatments.
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