Monday, December 10, 2012

Autism Beatnik - 2012 Blogging Advent Calendar Day 10



Let me set the mood if I may... I would like to take you to the Beat Generation of the 50's and 60's. We are in a dimly lit cafe and I am stepping up to the mic weighing 80 lbs less and with my goatee still completely black.

I strain to look at my note-cards through my dark glasses, bongos between my legs and a steaming hot cup of coffee (in this fantasy I like coffee) next to me. We are in San Francisco and the vibe is right.

I play a riff on my bongos as you, the audience, start snapping your fingers... Jack Kerouac eat your heart out...


It’s time for me to act
I wasn't given a choice.
So now I gotta speak up
And have you listen to my voice.

You see I have to talk
Because my little girl can’t
Put together sentences
She gets therapy for that.

Therapy I take her to
Two times a week.
But the sad thing about it is
We’re not meeting her needs.

What she needs is a type of therapy
It’s called ABA
Applied Behavioral Analysis
To put it another way.

But the problem with that is
It isn't covered by insurance
To overcome this discrimination
Is going to take endurance

How else would you describe
Not helping a kid the age of three?
Whose only crime was being born
 Different than you and me.

If my co-worker smokes
Three packs a day
Gets himself lung cancer
Who do you think pays?

And what if my boss
Does something unwise?
Packs on 100 pounds
From eating things super-sized?

Who is it you think
Will pay for his treatment?
Glucometer, insulin,
Needles and equipment?

But what gets me about those things
Is their lifestyle was a choice.
Yet I see lots of kids with autism
Most without a voice.

And it isn't like it was
Some fault of their own.
But their parents get told by insurance,
“You’re on your own.”

I got a friend who married
A chick with a cat.
He was allergic, got shots,
Who paid for that?

Insurance that he got
Through his work paid bill.
So how do you think
That makes a dad like me feel?

When a runny nose and eyes
That get all puffy
Get covered because a dude
Is allergic to fluffy?!?

I get so angry and
Feel like withdrawing
Yet here I am
Scratching and clawing

To get my girl Bianca
To reach her full potential.
Fighting for her 
Because I know it is essential

So in twenty thirteen
I ask you do the same
Write your representative
And call them out by name.

Ask them to change
The system as it stands
So that we can put all the tools possible
In these amazing kid’s hands


2013 is going to be a big year for autism insurance reform. We will build upon the momentum gained in 2012 that saw: 





We will continue to destroy the culture of discrimination that currently inhibits many on the spectrum from getting the help and support that they need.

Please do take some time and write your representatives and ask tell them that autism health insurance reform is important to you. It takes minutes and can make a difference not just in the life of my daughter, but countless other sons, daughters, fathers and mothers. We need all the help we can get.





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2 comments:

  1. How do you find out who your state representaive is? for example I live in the state of Illinois and do you have any sample letters that we could use?

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    Replies
    1. I provided the link to your representatives in the article. Just click on "write your representatives" and it will take you to the Autism Votes webpage where you can enter the state you live in and see all of the federal and state officials.

      If you are not certain what district you are in, you can check here:

      http://www.elections.il.gov/districtlocator/districtofficialsearchbyaddress.aspx

      In terms of a sample letter, I don't really have one to provide. If I was writing one, I would let them know what my connection was to autism, explain my difficulties in trying to attain proper treatment that was covered by my insurance... etc.

      Make it personal and ask them to support a federal mandate forcing self-funded plans to cover ABA and other scientifically proven, evidence based therapies.

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