I think a lot of us assume that "regular" people can't really make an impact anymore. The idea of "grassroots movements" can sometimes be written off as idealistic, impotent or inconsequential. That's why I want to shine a light on an incredible effort going on right now - led by some remarkable, passionate parents -- to end a terrible form of discrimination against people with autism. It's something we can all be a part of, without much effort.
I've blogged before about how insanely expensive it is to treat a child with autism -- intensive, one-on-one therapies can cost tens of thousands of dollars every year. That's obviously beyond the means of most families affected by the fastest growing disorder in America, which is why there are a lot of moms and dads out there -- as well as siblings -- making incredible sacrifices so that their loved ones can get the therapies they desperately need. Families are taking out second mortgages and emptying out savings accounts and college funds. They're going broke.
Our HollyRod Foundation has a mission to help uninsured disenfranchised families with very limited resources access treatment. I speak with these families regularly and feel blessed to be able to help alleviate their financial burden in even the smallest way.
But, what's really crazy is that a lot of families affected by autism actually have perfectly good health insurance. The problem is, in about half of the states in this country, insurance companies can explicitly exclude coverage of critical, medically-necessary therapies and other medical services for kids with autism. So if you live in California or West Virginia, for example, you may be paying big bucks for what would seem to be good health insurance. But if your child has autism, you're going to have to pay out-of-pocket for things like ABA therapy, the most common treatment for autism. Most likely, you're going to cobble together whatever help you can for your child -- whatever you can afford, even though it's probably not as many hours of therapy as your child needs.
My family is among the small minority who can actually manage to pay out of our own pockets for the therapies our son needs -- but with four children, we still feel it, so I share the anger and empathize with the massive frustration our fellow families feel. Because our kids have autism -- and not diabetes or cancer -- they are out of luck.
Parents across the country have banded together and fought to change state insurance laws to end this injustice. In just four years, they have already won the fight in 23 states, and the battle continues (New York's Governor Paterson just vetoed an insurance bill that passed unanimously in the state legislature, making him just the second governor to take this misguided action). They're fighting against some powerful people, including the insurance companies and their lobbyists. They're also fighting against ignorance. You may have read about one notable Senate candidate who mocked the idea of autism coverage -- she used air quotes when she talked about autism. But these parents are smart, they're organized and they're truly inspirational. That's why they're winning.
Autism Speaks has a wonderful advocacy web site, AutismVotes.org (I serve on the organization's board) with information about the insurance reform effort. Check the map and see if your state has done the right thing yet. If not, you'll find out how you can get involved and help make important change happen for people with autism.