Future Reflections Convention Report 2010
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by Dr. Fred Schroeder
Introduction by Dr. Edward Bell: I'd now like to introduce the first vice president of the National Federation of the Blind. He is a research professor at San Diego State University. He has touched the lives of nearly all of us. He is by far one of the country's most renowned experts in the field of education and rehabilitation. We are very proud to have him speaking to us here today--Dr. Fred Schroeder.
Let me begin with a disclaimer: I have no idea what "top down and bottom up" really means. [Laughter.] However, this will not at all deter me from speaking on the topic!
Let's start with "top down." Let's start all the way at the top, with the federal law, the Individuals with Disabilities Education Act. I don't want to sound negative, but I have to be honest. The federal law is not on your side. The federal law says that your blind child has the right to an education. That sounds pretty good, right? But when you look at how that right is implemented, essentially you cannot look to the legal system to support your child's education. The big assumption is that your child will be behind. If you say, "I want my child to be at or above grade level in all subjects," you risk being labeled as one of those difficult, unreasonable parents who hasn't accepted their child's limitations.
The school has to put together a package of services for your child. How does it do that? The process starts with an evaluation. Who decides what makes up that evaluation? The school. Who conducts the evaluation? The school. Who interprets the results of that evaluation? The school. Who takes that interpreted information and translates it into educational services? The school! Finally you're sitting at the IEP meeting saying, "This is not what I want for my child," and they say, "But based on the assessment information this is what your child needs."
We do have due process, and you can go to court. Your child will probably have graduated by the time you complete the process. And can you win in court? The short answer is, no. The standard set by the courts has been that as long as the school is offering services that provide some educational benefit, that's good enough. Some educational benefit! It's hard not to have some educational benefit. Plant your child in front of Sesame Street every day and he'll learn something!
So when we start with "top down," the problem is that the special education legislation lets the schools figure out what to do for children with disabilities. It assumes that whatever the schools do must be okay. I used to be a special education administrator. I can tell you the way it works. If the school district has a service and they think your child can benefit from it, he'll probably get it. If they have adaptive PE, guess what will come out of the evaluation! Your child needs adaptive PE, and they'll put it into the IEP. If there's a service they do not have, you will not likely find it in the IEP. That's the bottom line.
Does that mean we're left helpless? No. You can still use the formal system in effective ways. Going through the federal courts takes years and likely you won't get much from it. But for whatever reason, the schools are afraid of the courts. You can use the threat of the fair hearing process. Don't tell them that they don't need to be afraid! You can use that fear as you advocate for your child.
As Dr. Ruby Ryles has pointed out, you need to know blind adults. You need to know, concretely in your own mind, how you want your child to function when he or she is my age. You need to have a goal. I talked about this two weeks ago at a research conference on Braille. I used an analogy. I'm sure you're all familiar with the history of the marine chronometer. It was developed under the British Longitude Act of 1714. At that time the British Navy had no way of determining a ship's longitude at sea. To determine longitude you had to know what time it was at the port of departure and what time it was locally in order to measure the distance between the two positions. Nobody knew how to do that. They had pendulum clocks, and when you put a pendulum clock on a ship it doesn't work very well.
Why did I use this analogy? With the technology of the time there was no solution to the longitude problem, so the British government set up a grant competition. It offered a prize to anyone who figured out a solution. Many, many people came up with ways to tell time at sea. They tried all sorts of methods. The marine chronometer was developed because it was a non-pendulum clock. Here's the point I made at that conference, the point I'm reiterating now. Rather than saying, "There's no way to tell time at sea--there's no way to do this!" the British government started with a goal. That's what you need for your child. You need a clear vision of what your child's future should look like when he or she is fifteen, twenty, twenty-five, thirty, even fifty-three! You will develop those goals by knowing other blind people. Then you need to advocate in the schools to get the services your child needs in order to achieve those goals.
I wish I could tell you there is a formula that will always work. There is not. But one thing that helps is to take a blind adult with you to your child's IEP meeting. It is easier for the schools to speak authoritatively about blindness when nobody in the room is blind. When a blind person is sitting there, talking about the skills that she or he uses, it's very different. A lot of NFB affiliates send people to IEP meetings. A blind person who goes to an IEP meeting doesn't need to be an expert in the law, and neither do you, because the law is not really on your side. You need to advocate for what your child needs from the perspective of a parent.
What is one of the hardest things to get for your child? Braille instruction. There are two reasons for this, one practical and one attitudinal. As I said, schools don't provide things unless they already have them available. Unless you live in a rural district, they probably have a TVI. Does the TVI have an hour a day to work with your child, five days a week? Probably not. From the perspective of the school district, the school doesn't have the resources to teach your child Braille. That's the practical reason why it's so hard to get Braille into the IEP. Second is the attitudinal reason. If your child can see a little bit, the idea is that he or she is better off than a child who is totally blind. He or she can read print. Never mind that your child reads slowly, never mind that your child gets headaches and makes lots of errors--you should be thrilled that your child can see enough to be a print reader. Well, there's nothing wrong with seeing. Some of my best friends can see! [Laughter.] But what we're talking about here is functioning. Do you want your child to be fully literate? Now, some legally blind people are fully literate using print. But that is not the case for three out of four legally blind adults. That is the national statistic. For years the American Printing House for the Blind (APH) has collected information about reading methods. If you look at active readers--kids who read print and kids who read Braille--three out of four blind kids in the United States who have some sight and are reading, they're exclusively using print.
What can you do? You must make an emphatic argument that your child needs to be a Braille reader. You need a blind person to go with you. It is harder for the schools to tell you how inefficient Braille is with a blind person sitting there. This is negotiation, a strategic approach. You have to understand in your mind and heart what it is that you want your child to be able to do. Then you need to push the school district relentlessly. You meet with the special education teachers and administrators, and they say, "Braille isn't warranted." Then you get an independent evaluation. You get it done by someone like Dr. Ryles, someone who really knows what she's doing. After that, if the district is still stubborn, threaten to sue them. They hate that. Threaten to take them through the fair hearing process. They hate that. Camp out at the superintendent's office--it makes them nervous! I don't know why, but superintendents are very gun-shy about talking to parents. You'd think that school superintendents would be very good at talking to parents, but they don't like it. Call the superintendent and say you want an appointment, and guess what he'll do. He'll say, "We'll have the special education director meet with you." You say, "No, I want to meet with the superintendent." Someone in his office will say, "I'm sorry, but he's very busy and he can't meet with you." So show up at the office and say, "I plan to sit here. My child's life is at stake. I've got a friend at the newspaper, and she's going to be here in a little while to sit here with me."
We're talking about strategies here! Show up at the school board meeting. Go to your state legislator and talk about it from the standpoint of an injustice. The school is potentially damaging your child's future, your child's life, your child's livelihood, your child's self-esteem. This is serious stuff.
Obviously you don't want to start by being combative, but you need to start by being firm. Here's one of the biggest pitfalls you likely will run into. Your child has a little bit of sight. You say, "I want Braille." They say no, and you push, and finally they say, "Okay, we'll have your child be a dual reader. We'll teach your child to read both print and Braille." After all, your child can see a little bit. Doesn't it make sense to have your child use that little bit of sight and read Braille, too? Isn't that the best of both worlds? Well, it would be if Dr. Ryles or one of her graduates were the teacher, someone who really means what they say when they talk about dual reading. If your child can see graphs and charts and pictures--things that don't display easily in Braille--it would be helpful. Dual reading is theoretically possible. Lots of things are theoretically possible! But in most cases dual reading means maybe they'll show your child the Braille alphabet for a few minutes every week. What will happen is that your child will be a poor print reader, and after a year or two they'll tell you, "You know, Timmy's making real progress in print. He's learned the alphabet!"
If you want your child to be a dual reader, sit down with some blind people and figure out what that expectation is. What does it really mean? Unless you have a firm picture in your mind you won't know how to have your child get the best out of print and Braille. I'd start out by saying to the school district, "I want my child to be primarily a Braille reader. I want my child to use Braille for all straight text reading--in English, history, social studies. My child can use vision for some aspects of science and math." Don't let "dual reader" be code for waving a little Braille in your child's direction once in a while and having him or her spend the rest of the time in front of a CCTV reading print at twenty words a minute and getting bad headaches!
I'd like to say that "top down" has its place in negotiation. It does, but it's the smaller place. You need to start from the bottom up, and that's the power of your being here. Fortunately you've got three thousand role models here this week. If you were just looking at me, you'd think, "Man, my child's future is kind of bleak!" [Laughter.] But you can look at three thousand other blind people at this convention. Some people have had great training, and some people have had wretched training. You can build your plans on that body of experience. Start with solid expectations. Know what you want your child to be able to do, and build your strategies around your goals.
Before I close, I want you to know that you have more than three thousand role models here. You have three thousand friends and relatives. Blind adults feel about your children the way I feel about my own biological children. We want your child to get off to a great start. You will find blind people willing to spend time and energy and resources to help you and to help your child. I encourage you to become a part of this community. I understand that most of you have work commitments and other commitments, but to the degree that you can do it, go to your state NFB conventions. Go to the next national convention and stay all week. You might say, "My child is only four. Issues around Randolph-Shepard or employment or senior services don't apply to us." Of course they apply! They apply because they're part of you developing that clear vision of what you want your child's future to be.
I wish you the very best success. If I personally can ever be of help to your children, call on me. I'll do anything in the world that I can.
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