By Rob DeMoneApr 28 2006
In the political minefield that is the autism debate, there is a rumour.It’s not a pretty one, such debates seldom begat pretty rumours. And this particular debate is fought on one side by parents fueled by passion for their children.Who can blame them, or fault their motives. Everyone knows not to get between a mother and her child.
And that is why this debate over funding for autism treatment is such a political football.
The rumour, fast becoming the stuff of urban legend, has it that a particular lobbyist approached a particular person in a particular elected representative’s office to ask that yet another petition be presented to have autism treatment recognized in the Canada Health Act.
“I will not be the poster boy for autistic children,” the person is said to have retorted.Perhaps six-year-old Maya Kaler is a more appropriate poster child for autism. Her haunting black eyes only hint at the depth of mystery that is her mind. She’s considered mildly autistic, and the treatment that will help her have a better life (she only gets one life) is expensive.
So far, her Ocean Park parents have managed to cope – by depleting the family savings and cashing in their RRSPs.
It’s interesting this week, as we watch West Vancouver parents pack the kids in the Audi for the trek to protest Sea-to-Sky Highway construction. Those Gap-clad kids are given posters to wave and slogans to chant for the fawning TV cameras.It’s interesting to contrast the protest parents of autistic children must wage.Where is the orchestration for 150,000 children who live under the smothering blanket of autism? Where is the media frenzy to demand answers?You can’t see autism. It’s not a haggard deformity or a visible scar. You can’t command these nine-year-olds to flap signs in cadence to trumped-up poems about what an atrocity it is to have government make greater-good decisions their parents don’t agree with.
Many families of autistic children are, to be sure, privileged. They have the ability to pay for the intense Lovaas (behavioural) treatment that is giving them hope their children will lead better lives.But how long can they afford $40,000 a year for treatment and related family care costs?
More glaring is the untold story of the families who cannot afford treatment in the first place. Who champions their cause?The federal and provincial governments shunt this at each other, neither wanting to shoulder the rather extensive burden of responsibility. Because with that comes the huge funding burden.
There are many, many questions – and far too few answers. The trouble seems to be, no one will begin the discussion, lest they are considered to be taking the lead role, ergo the responsibility – and with that comes the burden of funding.It’s a complicated issue, and it deserves more pointed discussion and firmer resolve on the part of policy makers.
As the buck is passed, parents are left with the bills. And only those who can afford the good treatment are getting it.Bottom line: that’s not universal health care. And that’s a federal responsibility.