Why a Person who HATES POLITICS is lobbying for a bill


I think it’s safe to say that most of us have no idea how the political process works.

Several months ago, I got involved with PEP-C, which you may remember is trying to pass legislation requiring insurers to cover PT, OT and speech for kids (under 18) with developmental disabilities. Early in the process, one of the experts told us that the chance of getting our legislation passed the first year was virtually nil. I had to trust the experts, but I thought, for Heavens sake, it’s July! We have six months to draft a bill and find supporters before the legislative session begins in January. How hard can it be?

Well, it’s January, and let’s just say that now I understand why these things take years.

I’ll spare you the details and skip to the important part: As of late last week, we have a bill filed on our behalf. But there are questions my mother and other representatives would like answered, and today I’m going to blog my answer to this one:

Why is this bill necessary? What’s wrong with having the therapist visit only occasionally, with the purpose of teaching the parents how to work with their children?

It’s a fair question. This is the approach taken by Parents as Teachers, and it’s also the direction in which Missouri First Steps is moving. But both those programs serve kids under the age of three. As my daughter proves, the need does not go away at age three. She can walk, but she can’t get up and down stairs, jump, dress herself, or talk.

After the age of three, the schools provide services—as far as they are relevant to a child’s educational goals. But stair climbing and jumping are not educationally relevant. Many children need more than what school districts can reasonably provide. Since therapists cannot negotiate rates with individuals, we have to pay the full rate for each and every visit—meaning that the burden on families is even higher than it is on the insurance companies for the exact same visit. Fortunately, my family lives in Boone County, which provides some assistance to families. But I can’t help thinking of the families who live in counties without such infrastructure.

Back to the idea of parents being taught to work with their children. It is definitely important for parents to be given specific tasks and strategies to practice with their children. However, that’s not the total answer. Children—typically developing or not—often resist working with their parents on any skill. For instance, my son Alex—as typical a boy as you can find anywhere—is often resistant to instructions from me or my husband on things like the proper way to hold a pencil or draw a letter. But put him in a classroom and he becomes a model of cooperation and learning. Likewise, my daughter Julianna, who has Down syndrome, will sign and sometimes vocalize words for her speech therapist (and her big brother)—but not for us. She will dress herself for her OT—but not for us.

Secondly, the technique that works one day may be completely ineffective the next. Therapists are professionals, trained to know many ways to get to the same goal. If a child resists one technique, they can try something different. But parents are not trained; we are not licensed; we are not therapists. We are parents. We need the regular input of the therapists.

Finally, a parent needs to be a parent. Perhaps if I had only one child—maybe—maybe then I could realistically spend the necessary time to beat through the stubbornness, the resistance, and the inevitable changes in development. But I have two other children who need their mother just as much as Julianna does. There is simply not enough time to give her the hour of concentrated time that is required for her to progress.

If these services were universally the responsibility of the insured, we would not be seeking this law. But insurers regularly cover these same therapies for children who have already learned to walk, talk, and dress themselves. It is only children with developmental disabilities who are denied. This is discrimination. That’s not a word I throw around lightly; I think it’s overused by people with a victim mentality. But how else can you classify it, in this case?

7 thoughts on “Why a Person who HATES POLITICS is lobbying for a bill

  1. Sarah M.

    I commend you for fighting so diligently for your child’s rights. I also completely agree with you that it is not always best senario that the parent is the one working with the child the most. I learned this firsthand with our Early Intervention program. It got to the point where Cameron didn’t want to work with them, they wouldn’t force him to, so they were telling *me* what I should do with him. Yes, I agree the parent needs to be the teacher. But I’m not qualified in this area. I don’t know the different techniques to use with him. The things they asked me to do were requiring us to completely change our lives. I wonder, what do they tell parents who don’t stay home with their children and can’t do these things? And why don’t they realize that while, yes, I want to help my child, I also have another child who needs me and is feeling very neglected that he’s not getting the attention his brother is? Today I called our insurance company to see if there would be any problems covering the upcoming autism evaluation we have scheduled for Cam. She said that there shouldn’t be a problem covering the evaluation, but should he require services, I should call again. I asked her if she could tell me if therapies for autism were generally covered. She said, “Well, if it’s just a developmental delay, they aren’t covered.” What does she mean “just” a delay? I also took the time to inform ther hat that is, indeed, what autism is–a devleopmental delay. Very frustrating!

      • Sarah M.

        No, we are in Iowa. I just decided that I would cross the coverage-for-therapies bridge when we get to it. We took a break with EI therapies because of some things I didn’t like about our intervention teacher and because Cam was less than cooperative. I’m going to have to call them back and get something going again. Still not sure on how to address that. It’s just so frustrating that you have to fight so much for your child to be treated fairly!

  2. When Julianna was born, a doctor came in to talk to us–I was still half knocked-out from drugs and had yet to stand up post-C-section for the first time. And she said sternly, very nearly wagging her finger at me: “You have to be prepared to be an advocate for your daughter, because no one else is going to do it.” I think of that nearly every day.

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