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Profiles in Advocacy: Informing Change

Child Advocacy - Disability Advocacy  A member of the board of the New Hampshire Branch of the International Dyslexia Association, an esteemed author of articles on education advocacy and the mother of two sons, Suzanne Heath discusses how and why she connects policymakers with the information they need to make a difference for children with LD.


What brought you to the issue of learning disabilities?

Suzanne Heath: My kids had issues in school. I was familiar with the special education system, and it was not working as efficiently as it should. In the course of getting my child what he needed, I learned more about things that I thought could be improved, and that's what I've been working to do.


What made you feel like you had the power to go beyond your local school?

Suzanne Heath: I think the key to advocating for a child is making the system he or she is in better. In order to get an education for your child, sometimes you work with a teacher, sometimes you work with the school district, sometimes the school board, sometimes Congress — it's all part of the same thing.


The thing that brought me to that conclusion was when the head reading specialist in my child's school told me that she felt bad that I was concerned about the reading program, but she really didn't think I had to worry because by the time "these kids" got out of high school they were almost always reading at a sixth grade level. Now, knowing 10-20 percent of the population has some reading difficulties, I realized that my son was not the first child who ever had a reading issue, and he certainly wasn't going to be the last one.


There had to be something in place other than deciding that kids either couldn't read, or could spend twice as long and learn half as much. And it wasn't a situation of uncaring people. It was an uninformed system. So that, in a way, led me to changing the system.

When I started, it wasn't that they didn't have the skills to bring a child to grade level; but systematically it was okay to have so-called "reluctant readers" in the classroom, and to keep them back while other students went on to the next grade level. That's the thing that I'm aiming to change.


How did you start? What's the first step to being an effective advocate?

Suzanne Heath: If you're going to get what your child needs, you need to know what your child needs. You're going to have to read, and go to conferences, and go on the Internet, and find out what you need to know because you haven't had that job before. You have to learn it. So I put books in the library. I told people the books were there. I would send a pile of flyers to the pediatrician, to people who had evaluated our child outside of the school system, and to other parents so that they could put them into their network.


If I found good information, I sent it to somebody who needed to know it. When I met someone who needed information, I continued to keep up the contact. I guess what I try to do is provide information for people who can use it.


Anytime somebody--senators, congressmen, the governor — comes up with a policy that I think has a hole in it, I write and say, "This won't work because of this." Sometimes those people are in my state; sometimes they're not. I'm sure that many of my letters don't get read, and quite a few don't get answered.


Did you start out looking up all of your state and federal policy makers and sending each and every one of them letters, or did you start gradually?

Suzanne Heath: I started gradually. The first thing I did was get a copy of the state and federal law, because that's the game plan that I thought we would be operating under once my child was in special education.


At first, I didn't know how to use the Internet, so I asked a friend to show me. I would say that the Internet is critical to anything I've done, and it's critical to what anybody else can accomplish. As far as looking up state people, I really didn't decide to target people in the state, but when I had something that I thought wasn't working right, I would find out who to write to and write to them. You also have to spread the resources that you have to other people, other parents, at the same time using them yourself. It's part of doing what you can, when you can. The big things you do are no more important, and no more difficult, than the small things you do. If you drop off a stack of flyers at the laundromat, or the tutor, or the library, you may have wasted your paper, or you may have informed five people about where they can start looking for resources.

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