Who are actual LD advocates? As you'll see in this section, they are people just like you. Seeking a good education for their children has led them to work for a better education for all children with LD. Sandra Britt and Suzanne Heath took the next step and are now leading learning disabilities advocates. If they can do it, you can too.

Small Steps for Big Changes
A past president of the Learning Disabilities Association of America (LDA) and the mother of three children with LD, Sandra Britt talks about how she went from helping her children to visiting the White House as an LD advocate.

Sandra Britt: I have three sons who have learning disabilities, so it was very personal. When I started this journey, 38 years ago, there was not nearly as much parental involvement in the process as there is now. It was a long struggle, and there was not a lot of material out there--no Web sites. You just hoped you found something in the library. So I began to learn, I began to read everything I could put my hands on, and I learned to self-advocate the hard way.

LD Advocate: How did you take the next step to advocating for change in the system?

SB: The more I read, the more I was interested. And I thought,"Well, who am I that I can go do this?" But when you begin working at the state level, you soon discover that you can'I became involved by having my name submitted on the state special ed council.

The parent voice is a very strong voice. And we often don't think that, as a parent, we have anything to offer. "Who am I as a parent? I'm just a parent." That's typically the stance that most parents take. I have discovered, as I have done advocacy at the state and federal level, that a parent's voice is real, honest, and heartfelt.

LD Advocate: What would you say is the first step in becoming an LD advocate?

SB: Start small. Be comfortable with where you are going. Don't think you have to carry the whole ball of wax at one time. Know what you are advocating for. Read. Make yourself familiar. Oftentimes, when you interact with staff people on the state or national level, they are going to ask you questions. Be comfortable enough to agree or disagree, or to respond and formulate an opinion. It's perfectly okay not to know everything they ask, but it is so important before you take that very first step of faith out there to be comfortable with the issues that you are going to advocate for or against.

You know, if someone from a small town in Mississippi can do this, then anybody can. Nobody can determine the size of the step that you take but you. When you are comfortable with your advocacy at the first level, then move to the next level. An easy way to begin is either a telephone call or to write a letter. Tell your story, which is an easy way to begin. Most parents find they can do that. If there is a group of parents who can get together in the district, that's great too. It only takes 15--20 letters--genuine, honest-to-goodness letters--and somebody is going to flag them and take a look.

LD Advocate: Who should people address when they want to begin advocating?

SB: Their elected officials, both at the state and federal level, ideally when they are in their home district. Pick up the phone, and speak to a staff person to say, "I'm concerned"or "I'm pleased with XYZ."  In the course of conversation, you may know someone who is a friend of someone. It's often those connections that are the best tools you have to work with--an acquaintance somewhere, who happens to have a position of authority or who happens to be a friend of a senator or a representative, regardless of which level you are dealing with. Or you know somebody that they know. Often, it gives you more credibility.

When I first began to go to Washington to do some lobbying at the federal level for LDA, I began to make a relationship with someone in Senator Trent Lott's office. We had mutual friends back home in Mississippi, so every time I called, or occasionally visited, I was always careful to ask for this particular person by name. If I found an article that was particularly good about a topic we were interested in, or that supported a position we happened to be advocating for at the time, I would always share that.

LD Advocate: You just went and visited Senator Lott's office?

SB: All you have to do is pick up the phone, and call and say who you are, where you live and that you want to meet with him or with an aide. It is that easy. People don't realize that all you have to do is pick up the phone. You don't do it tomorrow, and plan to go the next day. But if you are going to be in Washington and you plan a little ahead, you call, and a scheduler will call you back. And if I know where I'm going to stay in Washington, I'll let them know where I'm going to be. You make yourself available.

When you get there, you know what you want to say, you say it as succinctly and quickly as you can. Then you thank them for their time, and you're out. Follow it up with a letter, but the most important thing is to keep following up, so that you are someone they rely on for information on learning disabilities. And then before you know it, once they feel comfortable with you, you'll get a phone call out of the clear blue saying, "Do you have an opinion on what's happening in the state regarding XYZ?"

SB: Very much so. If you can, tell them what's happening in the community--This is how this legislation is going to impact my school, or fifth graders,' (if you happen to have one.) Use that as the rationale behind your message. They need to know that there are real kids out there that legislation impacts. They don't always think about the kids, the parents and the teachers who have to live with what's been passed.

LD Advocate: Have you had any big wins in your advocacy work?

SB: Yes, IDEA '97 (Individuals with Disabilities Education Act reauthorization in 1997). Because of the relationship I had with Senator Lott's office when he was majority leader, I had worked with the aides and become very closely acquainted with his chief of staff, David Hoppe, who happens to have a child with a disability. I had been in to Senator Lott's office over the past six or eight years sharing information, and so I was included in the list of stakeholders who came to Washington every two to three weeks to discuss various changes to be made to IDEA during the reauthorization.

I was in Washington on the day that the bill was voice-voted in the Senate. I watched the roll call vote; as they voted for the piece of legislation that we worked so hard for. The only thing I could do was cry--just to be one of hundreds sitting in that room. We all constituted a whole and made a good piece of legislation. Then I was invited to the White House. Never in my wildest dreams would I have thought, when I first started doing this, that I would watch a piece of legislation happen, be asked to be a part of it, and then be allowed the privilege of sitting at the White House to watch it be signed into law. It never crossed my mind that I would be so blessed.

LD Advocate: So what's your favorite thing about advocacy?

SB: My favorite is being able to celebrate when there has been a good piece of legislation. I mean it has really been a learning process for me, and I continue to learn. There's not a week that passes that you don't learn something you didn't know, either about a piece of legislation, an organization or different members of Congress who you need to work with. It's just simply growing and expanding all the time.

SB: Yes, very much so. And hopefully what you're doing is making life better for the kids, and you are leaving education better than when it was when you found it.

And you know there have been wonderful mentors all along--people who have been willing to show me how it all happens, willing to share with me. It's not a secret society; it's more a sisterhood. It's not an exclusive club; it's more a kinship, I think, of people who have been there. They understand.

They like a good fight, and they are ready to go with it, or they are another parent who has learned and who is willing to mentor somebody else.

If I could give one piece of advice for a parent, it would be find a mentor. And begin to take your steps as small or as large as you're comfortable with taking.

Informing Change
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.

LD Advocate: What brought you to the issue of learning disabilities?

SH: 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.

SH: 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.

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

SH: 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.

LD Advocate: 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?

SH: 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.

LD Advocate: Can a busy parent with a full-time job be an effective advocate?

SH: Yes, yes. They definitely can. I have put anything I wanted a parent to have on the Web site of the New Hampshire branch of the International Dyslexia Association. You can take those flyers and put them anywhere. Mail them, and send them to a group of your friends; people who might use it and also pass it on to three more people.

There really isn't a wasted effort. People need to see things a few times, before they take a real look at it. I might talk to somebody five or six times, and I might get the brush-off. But then that person might read a magazine article, and then it won't be about a foreign subject. It will be about something they've heard about. Even using the correct vocabulary when you are at an IEP meeting is critical. When they talk about "best practices," you talk about "research based."  When they talk about "measurement," you talk about "objective measurement."  It's just little things that you throw out there. Just don't quit. It helps if you're an obsessed person, but even if you're not, there are things you can do.

LD Advocate: So what is it that you do now?

SH: Well, I'm on the board of directors of the New Hampshire Branch of the International Dyslexia Association (http://www.nhida.org). I served on the board of directors of the Council of Parent Attorneys and Advocates (http://www.copaa.org). I do some writing for Wrightslaw.com (http://www.wrightslaw.com), and I've written a book with Pete and Pam Wright about the No Child Left Behind Act.

LD Advocate: Is it important to work through an organization?

SH: I think you have to belong to an organization that is well connected with the disability you are trying to learn about. Get information about their Web site, their conferences, their publications. They usually have a newsletter and put out some information about training. I would do this even if I could not afford to go to the conferences or the trainings because you need to know what's out there. Membership costs are low, and you need the contacts and the information. A lot of times conference presentations are available on audiotapes that you can buy from their Web site after the conference. Sometimes you can send for the materials that were used at the conference. Several parents can get together and drive to a conference instead of flying. But you need to know, from an independent source. You need to become an expert. To do that in any other field, you would do research and get training, and you need to do it in the parenting field too.

LD Advocate: At this point, are you close with legislators? Or are you still removed and you keep on sending information?

SH: I keep sending the information. That's another reason I think people should be members of a national organization. Here are lots of resources for free newsletters and legislative alerts (including NCLD's LD News and Action Alerts). They tell you what the issues are, so that when you write, you're not just responding to what was on the nightly TV news, you've got the whole outlook of how this situation is being looked at by disability organizations all around the country.

SH: Occasionally, if I think that there's a personal experience that ties directly into the issue, I will. I always tie what I want done to something. Sometimes it's national statistics; sometimes it's a personal story. There are enough national statistics out there, that instead of telling your child's story, you could tell the story of 5,000 children in your state, just by telling that statistic. But I do see a value in tying it to something personal, because when you are in it, you have the knowledge of how that statistic got to be that bad.

SH: Well, the task I took on was to raise my child first, which required getting him a good education and protecting his self-esteem. And in accomplishing those things for him, I learned other things. I also learned how many other people are in my exact same shoes. And how many children are in the exact same shoes. And it would just seem wrong to me not to pass that information on to other people who can use it.

You look at the drop-out statistics, and the prison statistics, and drug use and suicide, poverty, homelessness, incarceration, and you look at the corresponding numbers of those people who have learning disabilities, and the connection is incredible, and that needs to be stopped. It's kind of a background belief of mine--people can accomplish a lot if they do what they can, when they can.

LD Advocate: How do you measure success?

SH: My big win is that my son is happy now. And he is proud of himself. He can do the work, and he knows he can do it.

The only real victory will be when we can go through the prison population, the homeless population, the unemployment population and not see that a huge number of those people have learning disabilities. You can also go through the Fortune 500 companies and pull out chief executives who have learning disabilities. A learning disability means you learn in a different way from the mainstream, and that's about all it means.