"If your child has any other healthcare issue you 'pay' for it with your Care Card. If your child has autism, you write a cheque - assuming you can.
This is the discrimination faced by B.C. families who receive that diagnosis. Furthermore, the life-time supports they may need are not readily available."
Michael Lewis, president, Autism Society of Canada
MY long-delayed conversation with West Vancouver councillor Michael Lewis was reignited by the news that Glen Eden school for autistic and other developmentally disabled students was in financial difficulty.
For want of $220,000 and a reorganization of its funding formula, the school has been evicted from its premises in southwest Vancouver and may have to close its doors to those students.
Although some aspects of the Glen Eden predicament are unique to that school, Lewis explained there are fundamental problems with B.C.'s overall approach to provision of support services for families trying to care for an affected son or daughter.
As the Autism Society of Canada explains, autism is a neurological disorder which causes developmental disabilities.
More accurately known as Autism Spectrum Disorder, ASD includes Asperger's syndrome and other mild to severe variants, all of which affect the way the brain functions. This results in "difficulties with communication, social interaction and unusual patterns of behaviour, activities and interests."
What triggers these disorders in apparentlyhealthy two-to three-year-old children is not yet known, although there is thought to be a genetic vulnerability at work somewhere in the mix.
Turning to the U.S. Centers for Disease Control for the most recent data, Lewis estimates the prevalence of ASD in Canada at about one in every 88 children.
For some yet to be identified reason, the incidence for boys is four-to-five times higher than for girls.
ASD is a non-preventable medical condition that gives rise to Lewis's first question: "Why is provincial responsibility for the intervention services required for an autistic child rooted in a dysfunctional relationship between the Ministry of Children and Families, Community Living BC and the Ministry of Education, rather than the Ministry of Health?"
Explaining that his family has had to struggle every step of the way to gain appropriate services for their now 18-year old son, Lewis expects they will need to do so again when the young man gets caught on the cusp of a provincial policy that categorizes 19year olds as adults.
"Thanks to our ability to advocate for the most beneficial interventions available, our son is able to perform many tasks; not everyone is able to do that.
"Also, my wife and I are getting older and we worry what will happen to Aaron when we're no longer able to do that.
"We think he might do well living with another individual in a two-person arrangement but he'd still need a 24/7 live-in caregiver."
None of the questions Lewis put to me had or have easy answers - except to suggest that, before we can deal with the systemic reorganization that is so obviously required, we must decide the moral dilemma: If Canadians truly believe in the country's pride that it is a caring society where every citizen is equal under the law, then we must be prepared to do whatever it takes to walk that talk.
That means you and I have serious work to do.
We must insist that all levels of our governments and quasi-government agencies are held to account for every tax dollar they spend. Next, unless we want a two-tiered medical system, we need to restate our healthcare priorities so that the services provided are not only affordable, but are equitable too.
Those tasks are inextricably linked and the difficulties being faced by the families of ASD children and adults are a vivid and worrisome symptom of systems that, if not already broken, are at least in disrepair.
In his daily CKNW editorial, our former premier's brother, Michael Campbell, is fond of saying people are forever asking for services they're not willing to fund.
That grates every time I hear it; I want to reply, "Nonsense! It's not that people don't want to pay; it's that people want to know their taxes are being spent on the services for which governments claim they're being collected."
When it comes to access to services for people struggling
with ASD, I doubt lack of money to support 24/7 care for Aaron Lewis, or to provide the medical, educational and other interventions offered by Glen Eden school is at the root of the problem.
I would be willing to wager the real issue is a matter of how efficiently government is managing and co-ordinating those expenditures.
When I hear that Glen Eden parents and caregivers and the Lewis family and others like them have no choice but to bounce between the bureaucracies of healthcare, education, MFCD and CLBC, I just know there are millions of tax dollars going to waste.
Who can put a stop to that? Do we allow autism families to fight their battles behind the closed doors of government?
Or are some of us willing to step up to the plate - if for no other reason than who knows when one of us might be next?