“Madam Chief Justice McLachlin concluded that ‘the legislative scheme does not promise that any Canadian will receive funding for all medically required treatment’ and that ‘the law did not provide funding for ABA/IBI therapy for autistic children.’
– the Auton Decision, 2004
The Supreme Court of Canada decision struck down a July 2000 B.C. Supreme Court declaration by Madam Justice Allen that Applied Behaviour Analysis was a “medically necessary” intervention for Autism Spectrum Disorder that must be funded by government.
This was a devastating development for the parents of autistic children and youth in Canada.
Even worse for West Vancouver’s Jean and Michael Lewis, parents of an adult autistic son, was that Chief Justice Beverley McLachlin made it clear she was reviewing the B.C. case in the larger context of other non-core health services provided by provincial governments across the country.
By itself that’s interesting since I know of at least one case where the court refused to hear an appeal of a lower court decision on the basis it would not consider a claim based on evidence that lay outside the strict parameters of the case at trial.
Regardless, public opinion did not support the 2004 decision not to direct the B.C. government to fund ABA therapy. People were angry and, despite the ruling, an Ipsos Reid poll taken shortly after the announcement showed 84 per cent of Canadians supported inclusion of ABA under medicare coverage.
Closer to home, Jean Lewis and West Vancouver autism advocate David Marley did not take the decision lying down. They wanted the legislation changed and, believing health care for individuals with autism should be viewed no differently than care for any other health condition, they founded
Medicare for Autism Now to achieve that.
At this point, a few facts about autism might help.
Autism is a neuropsychiatric disorder of varying degree which, at least in part, carries some inherited influences.
Current data shows that of the roughly 43,500 babies who are born every year in B.C., about one in 68 will eventually be diagnosed as having some degree of autism; more boys than girls are affected.
While autistic children appear to thrive at birth, the condition manifests itself in early childhood, often at around age two. Currently, there is no known “cure” in the usual sense of that word.
The reason for modifying the name of the condition to the broader term autism spectrum disorder is that, while some children are “high-functioning” and talented, others are more fiercely affected to the point of showing violent behaviour when frustrated or faced with situations they cannot handle.
And this is why parents’ ability to provide ABA intervention as early as possible in the child’s life becomes crucial to the happy and successful integration of their child into “normal” society.
But this is also where parents run up against financial reality — and bureaucracy.
In B.C., the cost of ABA therapies can run as high as $45,000/year but although both courts found that such treatments fall under Health Act provisions, funding for what the province calls “eligible autism intervention services” is administered by the Ministry of Children and Family Development.
The very mention of that ministry gives me chills.
Autism funding for children under age six is “up to $22,000/year.” Autism funding for ages six to 18 is “up to $6,000/year.”
These amounts are in addition to whatever educational programs and special education services can be provided by school boards.
Mention of school boards gives rise to this question: When the province pays a school board extra dollars to fund a special needs child in the classroom, what happens to those dollars if, as some North Shore parents have said, a classroom has no appropriately trained staffer available?
As things stand, funding rules and conditions are laid down, not by the Ministry of Health but by MCFD — the body that decides what constitutes “best practices,” “eligible therapies,” and who appears on the Registry of Autism Service Providers and, finally, precisely how parents may spend the funds.
So, if autism isn’t squarely administered by the B.C. Ministry of Health, if parents have no control over MCFD and if, as autism parent and advocate Dr. Sherri Brown told me, “autism is not a learning disability,” what recourse do we have?
Well, we can support groups like Medicare for Autism Now in its vigorous campaign to elect a government that will ensure autism therapies are covered under the Health Act, or the advocacy group Autism Speaks Canada (supportautismspeaks.ca) which is holding an event at Swangard Stadium on Sept. 27.
This column barely scratches the surface of autism issues. Marley and Lewis look forward to telling you “the rest of the story” via medicareforautismnow.org.
After 16 years with the multi-disciplinary Perinatal Programme of B.C. and later in various endeavours in the growing high-tech industry, Elizabeth James now connects the dots every second Wednesday on local, regional and provincial issues. She can be reached via email at [email protected].
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