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 (www.hollyrod.org) 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. They’re fighting against some powerful people, including the insurance companies and their lobbyists. They’re also fighting against ignorance. 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.
Actress, author, activist and philanthropist, Holly Robinson Peete has been touched by the entertainment industry all of her life. Her career as an actress dates back more than two decades and has led her to becoming a voice for her father, her son and her community. In 1996, Robinson Peete and her husband, Rodney Peete, formed the HollyRod Foundation, inspired by her father’s inspiring battle with Parkinson’s disease, with the mission to help improve the quality of life of people plagued with devastating life circumstances. In 2005, inspired by their son, hollyrod4kids was formed to focus on children’s causes and improving the lives of children affected by circumstances beyond their control, specifically autism.
Holly Robinson Peete will be speaking at The Women's Conference 2010. Watch the live webcast of the Conference here on www.womensconference.org on Monday, October 25 and Tuesday, October 26.