Wisconsin Autism Legislation Left “By the Wayside”
March 17, 2008 by Kristina Chew, PhD
Filed under Health
Ever felt like you’ve been caught between a rock and a really hard place? And in particular (if you are a parent like me) trying to arrange and rearrange your finances to provide therapies for your autistic child?
Parents of autistic children in Wisconsin like Cindy Brimacombe have found themselves in such a situation in the wake of the state’s Legislature leaving bills that would have affected how services for autistic children are funded and delivered “by the wayside,” as the March 16th Milwaukee Journal Sentinel reports. Republicans and Democrats both had differing plans to help autistic children but were unable to compromise:
Brimacombe said she wished the two sides had been able to pass a bill helping children like hers. She preferred the autism bill promoted by Democrats, which would have required all insurers to cover intensive in-home autism therapy.
Because insurance won’t cover that therapy, Brimacombe is spending about $1,000 a month out of pocket for the therapy. But she can’t get as much therapy for Max as she wants because if he gets too much, he’ll be bumped off the waiting list for the state program.
Assembly Republicans objected to the insurance mandate and proposed instead spending $6 million more on the program to eliminate the waiting list. Brimacombe said she didn’t like that bill as much because others would likely wind up on the fast-growing list.
Autism researchers say the key to success is getting children into therapy as early as possible.
Brimacombe spent months getting her son diagnosed and signed up for the waiting list. She said Max is expected to get state-paid therapy in January, more than two years after she noticed problems.
Getting various therapies (ABA, speech, and occupational therapy in the case of my son Charlie) early on (from the time that he as about 2 years old) and quite intensively did make a huge difference for my son. They also helped my husband and me overcome feelings of helplessness and panic as we saw Charlie make small gains — sitting in a chair without crying, learning to ask for a cracker using sign language — and as we learned that we could help Charlie learn to do things. The wait for services is agonizing but one thing we’ve learned is that the “key to success” involves something more than “getting children into therapy as early as possible.” This can be part of it, but autism is a lifelong condition and there is much that son has learned and been able to learn as he has gotten older, over time.
In other words, while it might feel that one is caught between that proverbial rock and that hard place, living with Charlie and learning to learn how he learns best have taught me that I can maneuver myself out and not stay stuck. I can learn new ways to teach him and to understand his difference communication (such as the multiple meanings he ascribes to yes and no)—I can move rocks and, through patient and long hard work, legislators too. At least, I’m trying to support and get autism legislation passed here in New Jersey—knowing the other parents and autism advocates that I know, no autism legislation gets left “by the wayside” permanently.
Well, on the plus side,according to the AP, Arizona’s bill, “Steven’s Law” has passed in the legislature and now goes to the Governor’s desk.
It’s a bummer about WI. I have friends active in that campaign and they are disappointed that even the amendment didn’t pass.
Good luck in NJ!
My theory is that Wisconsin legislators are suffering from “leaky IQ” syndrome. I can’t quite prove it yet, but with my studies at Google U, I am well on the way.
I know how this mom in this story feels. I am from WI and I was told when I first noticed my son was changing to wait. I waited and waited but never quietly. Every check up and every trip because he was sick I brought it up but I was silenced. I finally had enough and took a stand and almost 4 months later I was told my son had Autism. Thank god for those 4 months we had Birth to 3 doing speech therapy. Soon after that we met with a women to be placed on the waiting list for in home services. I was lied to and never got calls back. My son was placed on the waiting list over 6 months after that visit because this person failed to do her job and give correct information. He is now almost 4 and in Early Childhood and Head Start. He only gets a hour of OT and Speech at school because we simply can not at all afford extra therapy now mind you my child who is nearly 4 has the ability of a 18month old for communication. We are still waiting for our slot for in home therapy.
This state has some serious issues with getting help for Autistic children. I have been denied many services because of he gets them at school or W.E.A.P offers them and we can not use that program do to where we live. Its a shame that some states can get their acts together and others seem to lack the knowledge there of.
Here’s a report on the Arizona legislation on insurance.
@NueroticMamma,
And it’s also a shame that some states provide so much and some don’t, and that (within those states—as within New Jersey, where I live), there is tremendous variance from town to town. By moving 15 miles away to a different town, we were able to find the right kind of program for my son—-but it seems as if the states and towns should be able to see what each other is doing and learn about what might work and what does not.
I live in Wisconsin, and my daughter has been on the waiting list for intensive services for a year now. We provide her the services we can, but in no way does it approach the level we’ll get once her number comes up (and if the level did approach what we’ll get in the intensive program, we’d pay a price for it, as was mentioned in the story).
In addition to autism, my daughter also has epilepsy. The services for that are covered by our insurance. It makes absolutely no sense to me that only one of her two neurological conditions is covered by insurance. And I am deeply disappointed that nothing was done in the last legislative session to correct that.
It’s sad than in a so-called progressive state like Wisconsin, the investment in early education services is still only beginning to scratch the surface of what’s needed.