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Sunday, April 10, 2011

Funding Schmunding

A new series of books came into the library the other day.  “Diseases and Disorders” is the umbrella title.  One of the twelve books was called, “Cerebral Palsy”.  Of course, my interest was piqued.

I paged through the book and realized how well versed I’ve become on all matters CP-related.  For a very non-medical person, I know a lot about brain hemispheres, spasticity, and muscle relaxants.  About half-way through the book, I came across this page:

And my heart started turning red with rage.

I realize, of course, that this is a very sensitive subject.  I know that many of my readers are parenting autistic children and deal with the similar struggles.  I understand that autism is as real as cerebral palsy, and the diagnosis is also life-changing and dream-revising.

But, why are autistic kids offered so much more than those with CP? 

Richie and I are so blessed to have jobs, to have family support, to have resources that allow us to pay for Ellie’s therapy.  But, today, when I wrote out a $1300 check to the Movement Centre (which will cover us only till June), it stung. 

I have heard many of my friends complain about the cost of hockey or dance, swimming  or T-ball.  “Paying for all these extra-curricular activities is gonna send us to the food bank!” they exclaim, only half-joking.

The joke doesn’t sit well with me.  Obviously.  We spend more in one MONTH than the average parent dishes out for an entire year of hockey.  And the money we’re spending on therapy?  It’s not for an “extra curricular activity”.  It goes towards the mere hope that maybe Ellie will be able to walk functionally with canes one day.  There is nothing “extra curricular” about it.

But, again, I know that we are blessed beyond measure to even have the ability to pay for this therapy.  What about the people who DON’T have it?  What happens to their child with cerebral palsy?

Well, if they live in Manitoba, they get once-a-week “free” home therapy.  If they live in Florida, they get nothing. 

What would happen if that same child had autism?  Depending on where they live, their child would have access to fully-covered intensive Behavioral Intervention Therapy.

It makes me mad.  And sad.

We have seen lives change because of Conductive Education.  CP kids who were unable to stand up on their own are able to take steps in a walker after a 4-week camp session at the Movement Centre.  It WORKS, it’s EFFECTIVE, it’s LIFE-CHANGING.  And it should be covered the same as therapy for autism.

So, who do I vote for in order to see this change?  Who’s going to stand up for kids with cerebral palsy? 

Richard, maybe it’s time to start thinking about running for both Congress AND Parliament.  I’d make an awesome trophy wife.


Sheila said...

Wow! This is eye opening and heart breaking! If you start a movement, I'll follow!!

Andrew said...

This morning's posting on:


Erin said...

Hmmmm.....behavior intervention training for autism certainly isn't fully funded where I live. It isn't even offered in my city. You have to travel to Dallas or Austin, etc. to be trained and then administer the therapy yourself.

Danielle said...

Jeni McCarthy's flagship organization is called Talk About Autism Now.

Let's start our own political party Talk About Cerebral Palsy Now.

Not just therapies (which are important) but the lifetime costs: wheelchairs, home reno, orthotics, attendant support, vehicle conversion, and on, and on, and on.

No mattter how much CE you do, you can't make yourself completely non-disabled, but technology can make up the difference. Now where I'm supposed to get $25,000 for a wheelchair that maximizes my mobility...don't ask me. Maybe from my future lawyer income 'cause it's not coming from the province (neither is a replacement for the 10 year old one I have now).

To say nothing of the fact that NO neuoscience research is focused on treating CP-causing brain injuries.

To say the least, I feel you on this one Chrystie

Jennifer said...

Yep, I feel ya on this one! I could say more, but I won't here. I'll save it for another place....
:-) But you really would make an awesome trophy wife! love you!