OPINION: Children's advocates afraid to speak out

PREMIER Christy Clark's "Families First" cry appears to have gone the way of her predecessor's "Heartland" and "Best Place on Earth" slogans - and maybe that's a good thing, because we now know where we stand.

Responses to my Sept. 5 story, Autism Families Treated as Less Than Equal, suggest that the above quote that I first used in March 2011 is as pertinent to today's families of autistic and other developmentally challenged children and adults as it is to would-be whistleblowers in private corporations and government.

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That should be disturbing to anyone who believes British Columbians enjoy enlightened, equitable education and healthcare.

How so?

Because several of the emails mentioned the writers' fear of retaliation - against themselves or their children - if they were to speak up about a lack of the services government assures us are available to everyone.

The fear goes beyond members of the families; it includes professionals who, against considerable odds, try to provide the most appropriate interventions and ensure the best possible outcomes for our vulnerable citizens.

That same fear also means families are reluctant to have their names mentioned in a story like this.

Such was the case for one North Shore parent who is afraid she'll be labelled a chronic complainer if she speaks out.

"I have been trying for two years to have my child assessed," she began.

"I know integration (in the classroom) seems to be the number 1 concern, but where are the human rights when the system decides not to spend resources on these children?"

"What do I have to do as a parent to help my child?" she asked, "I don't want to give up, but I'm at the point where this continual effort is draining whatever energies I have left."

The extent of those efforts became clear in the most poignant of ways as she struggled to explain them in English, a language that is not her own.

One of the reasons this mother struggles is that, as teachers have revealed, despite the good-news announcements we hear about millions being committed to the education of children with special needs, the dollars are not always deployed where the rubber hits the road in provincial classrooms.

How else to explain the disappearance of so many special education assistants (SEAs) from North Shore schools, let alone from schools across the province?

The system that parent spoke of doesn't stop at the school door, of course.

It encompasses health care that consumes close to 50 per cent of the provincial budget, the now-infamous Community Living B.C. (CLBC) with its salaries that are not bonuses and many other government and private agencies.

So since Victoria decides all the policies anyway, perhaps we should just eliminate the middlemen - school boards and health districts - and make provincial politicians directly accountable for provision of these services.

Was letter-writer Lenore Clemens thinking along those lines when she wrote that ". . . ministries (who are) supposedly responsible for helping children and families reach their full potential as citizens (must) assume that responsibility. . . ."?

How do we achieve that when, in the absence of robust whistleblower protection, even a professional therapist felt she had to give a parent of a child with Asperger's Syndrome some advice off the record because she could lose her job if "they" found out.

What information?

A minor grenade that "they are not diagnosing higher functioning kids with AS or PDD (pervasive developmental disorder), because they're in the middle of a big change to the way kids are being diagnosed. . . ."

Who are the "they" to whom the therapist referred?

Were they trained medical practitioners?

Or were they bureaucrats following a political dictum to narrow diagnostic parameters so that "the system" can escape financial responsibility for the costs of care or for funding SEAs in the classroom?

Let me get this straight - children with conditions for which early and appropriate interventions are essential if the best possible learning and social outcomes are to be achieved, are now expected to mark time while the system gets its ducks in a row?

Perhaps that's what led West Vancouver resident David Marley to write, "What's worse is the apparent lack of concern or interest on the part of elected officials and their public policy advisers."

Am I being too harsh when I echo Clemens' comment, "This inhumanity must stop."

Tough; I'll echo it anyway because it borders on the criminal for a self-described "business-savvy" government to allow these kids to go wanting while it runs up a provincial debt towards $60 billion; squanders millions on a stadium roof; $6 million on legal fees to end the BC Rail trial; $30 million to make the Boss Energy misfeasance lawsuit go away, and who knows how many dollars to keep Christy Clark's travel budget fed.

Is there any doubt British Columbia needs some strong whistleblower legislation and a few courageous whistleblowers to go with it?

Maybe Clark could put that on her too-busy-to-have a fall legislative agenda?


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