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You must be the change you want to see in the world. –Mahatma Gandhi

I’ve never been a political person.  Oh, I follow politics in a cursory fashion.  I watch the Daily Show and Colbert Report.  I vote. Occasionally I have a heated debate with a friend over a beer.  But I’ve never had the desire to go on a protest march or hold up a picket sign.

Having a child changes you.  Having a special-needs child really changes you.  Hardcore.  For me, this change is evolutionary. I developed a momma-bear voice and learned to advocate for J-man.  I advocate for small things (he needs a pencil grip!) and large things (more hours of intervention).  I recognize when things are working, when they aren’t, and when to bring the pain.

I am his voice until he has his own.

But something peculiar happened this winter.

Our local paper ran a story about how Blue Cross/Blue Shield (BCBS) is taking away coverage for autism therapies in 2012, affecting approximately 200 families.  With no state mandate for coverage of Autism Spectrum Disorder (ASD), private insurance plans for autism therapies are dwindling.  Even with evidence demonstrating therapy is effective, insurance companies are refusing coverage.

I panicked.  We have BCBS.  J-man gets Applied Behavior Analysis (ABA) therapy.  He’s made exciting gains since starting, and the idea that we might lose coverage made me sick.  Picking up the phone, a few calls later… and I had my answer.  We would still have coverage!  My employer choses to cover it.  I was thrilled!

And then I was angry.

J-man has gained so much since we started ABA. We are blessed.  And lucky.  Lucky that I have my job.  Lucky that my employer provides coverage for ABA.  The vast majority of children with autism in my state are not lucky.  They don’t have access.  Their parents have to fight tooth and nail to get access.  Or they have to beg, borrow, and steel to pay for it out-of-pocket.  Those children don’t have the opportunities J-man has.  And why?  Because the insurance industry doesn’t want to pay for it, even though data shows that over 50% of the children who receive ABA need minimal supports in the future, and many more make gains.  And even though the cost is only approximately 0.2% of the total cost of health care.

Yeah, I was angry.

So I decided to do something about it.  A friend was looking for parents  willing to write letters to legislators advocating for a bill mandating insurance coverage for autism.  I raised my hand.  Heck, I can write a letter.  I can make a call.  Suddenly, and I am not sure exactly how this happened, I am a parent leader for an advocacy group.  We recruit parents and network with legislators.  I attend subcommittee meetings and testify.

What the heck?!  I am just a mom!!!

Then again, who better to lead the charge?

This is next-level advocacy.  This is taking the things you want for your child, and saying “Hey, everyone should be able to have this!”.  This is becoming part of the solution.  It is trying to make the world a softer place not only for your child, but for all children.

It is daunting, scary, and empowering.

So let me give you a few tips, should you want to start… you know… changing the world.

  1. Know your voice matters. That is vital.  Your knowledge matters.  Your story might be the only one that the policy makers ever hear.  So tell it.
  2. Identify the key issues you want to focus on and then plan your attack.  Think your school district needs to spend more money on special education?  Learn about the issues, attend school board meetings, rally community members, make some phone calls.   Think bullying is a problem in your child’s school?  Propose implementing a Circle of Friends program for all children.  Find something you are passionate about and then put that passion into action.
  3. Get others involved as well!  If you are passionate about it, someone else is too.  Ever have a friend or family member say “Is there anything I can do…..”?  It is time to cash in that chip!  Encourage others who feel voiceless, and refer them to #1.
  4. No action is too little.  If all you can do is write an email, do that.  If you can attend a meeting, do that.  As you do these little things, the bigger things seem less daunting.  And then suddenly you are me, standing in front of a room of 15 legislators, telling your story and sweating profusely.  The adrenaline high lasted for hours, my friends!
  5. Finally, know that when you care for others, you make the world a better place for your own child.  And that’s a win-win.