Thursday, February 10, 2005

Ellie the Lobbyist

I wish I'd taken a camera to document the occasion. Someday, I'm sure Ellie will be proud to say that she protested at the Capitol before she could even walk! She did wonderfully during the 3 hour hearing. She was wired and stayed up until 11:30 last night, then slept in until 8:30 this morning!

Thanks to Save First Steps, we knew exactly when the public hearing was, where to park, and how to get to the meeting room. We noted on the map that the hearing was in the largest meeting room. Nonetheless, when we arrived we found the hallways outside the room crowded with parents, advocates, providers, and children. It was chaos and pandemonium. When we finally got close enough to see inside the hearing room, Paul counted close to 200 people inside.

After waiting in the hall for over an hour, we managed to squeeze in, and we could finally hear. I wasn't called to testify, but I did have a picture of Ellie alongside a paragraph describing how well she's doing because of First Steps that I submitted to have passed out to the committee. I only wish I'd had time to schedule meetings with my state senator and representative while we were in town.

The testimonies were fascinating. It turns out that the governor and the committee believe that private insurance would pay for the services that First Steps provide and that Medicaid will pick up the rest of the tab. Um, no. Most private insurances only pay for rehabilitative therapies, e.g. short term accident-recovery scenarios. They won't pay for developmental therapies, therapies related to a congenital condition, or anything at all once you've reached your lifetime cap. Many of these kids reached their lifetime cap shortly after they were born, due to special medical issues. And most of us who benefit from First Steps don't qualify for Medicaid. (Who really does, anymore? Blunt cut that program too.)

We heard testimony about how hard it is on families to have a child with special needs. Man, that's true. The divorce rate is sky high. The one thing that has been easy about dealing with Ellie's "special needs" has been accessing the First Steps system. Before she was even born, we were told about the system. Before we could take Ellie out into the world, an intake coordinator came to our house to explain First Steps to me. As soon as I was emotionally able to pick up the phone and call, therapists started coming to our house. I cannot quantify how much this program has helped me emotionally. It's incredibly powerful to have these trained professionals looking out for your child and teaching you what to do when you don't even know how to begin. I think everyone should have a few visits from a pediatric PT and OT when they bring a new baby home. It's amazing.

Thanks to all who have been so supportive. I don't know if Missouri First Steps will be saved, but I feel like I'm doing everything I can to help save the program. So far, all the Democrats are telling me that the program is critical and must be saved. The Republicans are telling me that the cuts have to come from somewhere to hold the line on taxes. I guess it's easiest to cut the money here. What's easier than taking candy from a baby with disabilities?

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