Looking out the window for his autism waiverA few years ago, when I was trying to get the MINIMUM of services for my child, I had a difficult time. As soon as they found out he was "developmentally delayed" and "autistic," bye-bye went any coverage for any autism-related services. You know, because their reasoning was, "Well, it's not curable. So no coverage for you!"
If I told them he had a speech delay? NO PROBLEM. But silly me told the truth and when we tried to get him into a feeding clinic (because he only ate rice crackers and apples. As in, ONLY RICE CRACKERS AND APPLES), they denied it, we didn't have the money to pay out of pocket right away, and back on the 18-month waiting list we went. Awesome Sauce.
Now we're lucky. Pennsylvania is one of several states that have already mandated that certain treatments (like ABA) are covered by insurance. They've also mandated that other medical treatments and therapies that were once denied (because of being related to autistic services) are covered. Naturally, for families like ours, this is a godsend. But not everyone feels that the states should mandate coverage. And not every state is willing to pass an Autism Waiver, designed to help with respite care and independence, keeping autistic individuals in their homes and out of institutions. Like I said, we're LUCKY in Pennsylvania.
Right now, Michigan is the latest state about to lose the fight. Time is running out, as legislators are about to adjourn for the holidays. This means that their autism bill is pretty much dead in the water, despite the fact that their house approved it. Even the Lt. Governor-Elect Brian Calley, who has a daughter with autism, supports the bill. But because the House and Senate in Michigan can't agree on whether or not it's appropriate to mandate insurance coverage (and some in the Senate want to put caps on how much therapy a child receives or a dollar amount limit), it's going to sit there. And then they might get around to it next year. Maybe. Thanks, Michigan.
And let's not forget Nevada Senator-hopeful Sharron Angle, who last year campaigned that "autism" and maternity should not be mandated coverage. Yes, "autism." As in air quotes. As in, she didn't think that people should have to pay for things they don't need. You know, because people with autism don't NEED services and coverage. And she claimed that people were falsely claiming their kids had autism because, you know, it's fun to do that and stuff. That's right! We're LYING because we WANT our kids to spend all of their free time in OT, PT, Speech, and other therapies! Instead of playing. Makes sense to me. Luckily? It was passed. But no thanks to Ms. Angle. Who, by the way, said that Latinos were probably Asian. Real winner there, it's probably a good thing she didn't win.
Look, we're not looking for special treatment here. All we're asking for is access to services. Access that other disabled people in our home state already get (there are existing waivers and bills for MR and other disabilities). Coverage that other disabled persons have access to. Nothing new, nothing different, nothing special. Just the same. Why is it so hard for legislators to understand that? I know, the economy. Money. Don't want to give anyone anything for free, stuff they haven't worked for.
Well, I have news for y'all. If we don't start investing in autism services NOW, there will be a whole generation of kids that grow up, have no potential to become productive members of society, and will rot in institutions, warehoused at the taxpayers' expense. Either way we're going to pay. So do we want to pay to help people or pay to put them away some place and forget them, making it someone else's problem?
The good news? As of right now, 23 states have autism legislation on their books while 13 additional states and Washington, D.C. have endorsed autism bills before their state senate. Nine states are working on the bill. Five still haven't even attempted autism insurance reform. And Virginia's didn't pass. And Michigan's is probably not going to pass.
We need this. Now. Get it together, America.
Image via Marj Hatzell