Future Reflections Winter 1993, Vol. 12 No. 1
MEETING THE NEEDS OF THE BLIND CHILD: WHAT IS THE PARENT'S RESPONSIBILITY?
Reprinted from the April, 1990, Braille Monitor.
From the Braille Monitor Associate Editor: Surrounded by a landscape littered with federal and state regulations for providing services and education to blind children, and battered by the jargon and expertise of the professionals, parents of today's blind youngsters can hardly be faulted for seeking as much help as possible without expense to themselves. After all, they have been assured that their children require special intervention--intervention which would be very expensive indeed if it were contracted for independently. Persuaded over the years that because they could not provide the vast amount of instruction necessary to make up the child's sensory and experiential deficits, parents have been brainwashed into depending on the professionals to decide what is best at every turn. Parents often feel that, since they have had to give up their right to make decisions, at least they should be excused from paying for the course of action chosen. It is not surprising, then, that we find blind children tucked away in programs that have space for them, whether or not the curriculum meets the child's true needs. When the parent who senses dimly that something is wrong protests, he or she is usually made to feel that the complexities of the child's needs are beyond his or her comprehension. Furthermore, it is hinted that if the parent doesn't like the course of action chosen by the professionals, he or she can find another placement and pay for it, too.
Recently the parents of a gifted blind three-year-old wrote to Barbara Cheadle, president of the Parents of Blind Children Division of the National Federation of the Blind. Fortunately, they were at the beginning of this carrot-and-stick spiral of domination by professionals. They are bright, sensible, and deeply committed to providing their daughter with an education worthy of her abilities. But they were confused, so they turned to those with the most experience in working with professionals to meet the real needs of blind children. The exchange of letters is instructive to everyone who is sometimes tempted to relinquish personal responsibility for self or child to those whose expertise is merely professional. Here is the exchange of letters between these parents and Barbara Cheadle:
December 18, 1989
My wife and I had the pleasure of meeting you in May, 1989, at a seminar for parents of blind children. We told you about our blind daughter Laura and our concern that her preschool education could be affected by state funding cutbacks for the 1989-90 school year. I am writing now to ask your opinion and advice regarding what the law entitles Laura to have in terms of her preschool education.
Laura turned three years old in November, 1989. She is performing very well as indicated in the attached Psychological Report, which was completed by the agency here. Her overall diagnosis is that she is totally blind but also gifted. All of this is great news, but we still have remaining concerns about the quality of the education being provided by the educational facility.
The agency has provided the assistance of both a pre-Braille skills instructor and a mobility/orientation instructor during the 1988-89 and 1989-90 school years. This aspect of Laura's education has not been affected by any reduced funding. We are very happy with her progress in these areas. Also, both of the instructors are strong advocates of Laura's right to an equal and proper education.
The area that we are unhappy with is the general classroom in which Laura has been placed. During the 1988-89 school year Laura attended the local United Cerebral Palsy (UCP) classroom. She interacted a great deal with the other children. Due to reduced funding, Laura has been placed for the 1989-90 school year in a local Project CONNECT classroom that otherwise consists of speech and hearing impaired children. These children provide very little audible stimulation for Laura. Also, Laura is functioning at a much higher level than the rest of the children. The attached psychological report notes that Laura is performing at the 97th percentile compared with sighted children of her age whereas the other children in the classroom are performing at the 4th percentile. In fact, the attached report concludes that Laura would more appropriately be placed in a preschool setting that serves children with average or above average verbal and cognitive skills.
We met with the agency staff in October, 1989, to review Laura's situation. At this meeting the responsibility for (1) finding a suitable preschool classroom for Laura and (2) funding the preschool tuition was placed with us. We have recently heard that there is a possibility that the agency may terminate Laura's eligibility for the Project CONNECT classroom she is now attending because there are children with greater needs for the facility. In any case the provision of Laura's pre-Braille skills and mobility/orientation instructors seems secure.
We want our daughter to be as prepared as possible for elementary school. We are very pleased that she is doing so well but also realize that she will need continuing special education to maintain her high performance. We look at her needs as absolute rather than what her needs are relative to other children. The agency view on this matter appears to be greatly influenced by its funding constraint. You can help us by answering the following questions:
1. What type of education is the State required to provide for Laura by law?
2. Does the Project CONNECT classroom setting described above meet these requirements? Please take into account the disparity between Laura's functional level and that of her classmates.
3. Would it be within the law to deny Laura the right to attend the Project CONNECT classroom even if such denial is for the purpose of providing room for a child with greater needs?
4. Whereas the agency's evaluation concludes that Laura should be placed in a normal preschool, is it within the law to place the responsibility of finding and funding the appropriate preschool on the parents?
5. How does the law address Laura's situation? Does the law place primary and fundamental emphasis on her needs as a totally blind child, or does it also account for her high functional verbal and cognitive skills?
6. What can we do to insure that our daughter's rights to a proper education are fulfilled?
Please note that I have certain information concerning the federal and state laws on this subject. I am seeking an interpretation of the laws as they might apply to Laura's case. I am hoping that you can help me understand the law and that I can therefore be more influential when I deal with the agency in support of Laura.
Regretfully, we were unable to attend the recent parents of blind children seminar in our state. We realize that we could have discussed this subject in person at that time. Therefore, we will especially appreciate your assistance in responding to this letter. You may also call me at my work telephone number if it would be more convenient. I could call you back so that I incur the telephone charges.
Thank you very much for your support. We hope that you and
your family have a happy holiday season.
January 31, 1990
Dear Mr. and Mrs. ----:
I have read and re-read your letter many times and have given your situation much thought. You raise some important questions, and you deserve the best answers I can give you.
First of all, I don't think the primary issue here is what the law does or does not provide. Sure, you want to know how it applies to your situation, but the fundamental question you have to deal with is that of your daughter's needs. Only then are you ready to deal with how to meet those needs. If the law can be used to support your position, then you'll want to have it enforced vigorously! If the law is silent on the matter or, worse, has provisions you don't want enforced, then you will have to use other means to get what you need--negotiation, compromise, pulling strings, using publicity, etc. Of course, if the provision (or omission) in the law is serious enough, you will also want to get together with others of like mind and work to get it changed. In short, you will want to interpret and use (or not use) the law in a way that will most benefit your daughter. I believe, from the tone and sense of your letter, that you have the capacity and determination to do this.
This brings us back to the fundamental question: what does your daughter need? Specifically (and I believe I am accurately reflecting the situation as you have described it in your letter) should your daughter, who is normal in every way except that she is blind and intellectually gifted, remain in a preschool setting with children who are functioning at a level far beneath her? And should the agency which has been paying for this special preschool program find and pay for a regular preschool program (or maybe even a program for gifted preschoolers, if one exists) for your daughter?
I do not think from what you have told me that anyone involved believes that your daughter should stay in her current preschool setting. I certainly don't. It is clear that, not only is there no benefit in it for her, but there is a real danger that her current abilities and skills will begin to deteriorate as she unconsciously begins to imitate the children around her. She needs to be with peers who will challenge and stimulate her.
The preschool is only muddying the waters by telling you that your daughter should leave the program to make room for a child who needs it more. You are absolutely right that the question of other children's needs should have nothing to do with making a decision about what your daughter needs--including whether the program is right for her.
So why did they bring it up? Wouldn't the assessment stand by itself? If it was a strategy to get you to agree to the assessment, it obviously backfired--as it would with just about any parent I know. I think they brought it up for the same reason that in the old fable the scorpion stung the fox. The scorpion had convinced the fox to carry him over the river. Right in the middle he stung the fox. As they both sank to their death the fox asked why he had done it. The scorpion replied, "I couldn't help it. It's in my nature." It seems to be the nature of institutions to be primarily concerned with what's best for the institution.
What do you suppose the agency would recommend if the program your daughter is in were in danger of closing its doors for lack of students? Let's suppose that nothing else had changed--your daughter had the same abilities and the same needs--the only difference was the level of demand for the program. Don't you suppose they would find compelling reasons why your daughter should stay in the program for a few more months or maybe even another year?
Given the nature of institutions, my question to you is this: Do you really want to give an agency, which has demonstrated that your daughter's needs and welfare are secondary to its own, the power to select a preschool program for her? Think about it. Who cares more about your daughter, you the parents or the professionals? True, you will not always know what is best for her, but neither will the professionals. That's why you should always be in charge. Very often parents of blind children, out of ignorance or insecurity, allow professionals to take over and make decisions that are both the right and the responsibility of the parents.
Another way to think about the situation is to ask yourself, "If my daughter were sighted, would I want a governmental agency to have the right, regardless of my desires and best judgment, to select a preschool program for her?" This question is based on the presumption--or philosophy if you will--that the average blind person can live and compete on an equal basis with the sighted, exercising the same rights and responsibilities.
If the parents of the average sighted preschooler are expected to select and pay for a preschool program in your state, then so should the parents of an average blind child. If state or federal funds subsidize preschool programs for low-income families, then the blind preschooler of a low-income family has the same right to attend that program as any sighted child who qualifies. (The Headstart program, by the way, has a mandate to serve disabled children. I have known of several low-income blind children who attended Headstart programs successfully.) If a school has a program for gifted and talented children, then the gifted and talented blind child has the same right to participate as his or her sighted peers. The same rule applies for any other public or community program you can think of--YMCA swimming lessons, scouting, school field trips, church choir, and so forth. Blind adults or children should not be excluded just because they are blind, but neither should they expect special favors.
I understand that this philosophy is not as simple to implement as I have perhaps made it sound. First of all blind children do have unique needs which require special services. Blind people (for the most part) cannot read print or cannot read it efficiently and therefore need an alternative system for reading and writing. Braille is the answer to that need. But because Braille is not used by the public at large, it requires special instruction from a teacher trained in the method. The same is true for independent travel. Again, the alternative technique (use of the long white cane) should be taught by someone who knows how to travel independently with the cane. There are many other alternative techniques which a blind child needs to learn, such as methods for cooking, shopping for clothes, putting on make-up, doing research in a library, cleaning house, doing the laundry, or fixing a leaking faucet. A few of those skills, such as Braille and, to a lesser extent, cane travel, require specialized instruction. Most are a matter of common sense and will be taught at home just as they are to any other child.
The question then is whether the use of alternative techniques changes our expectations of blind people. Does it alter our philosophy regarding the normality and equality of the blind? History has demonstrated that it does not. This philosophy, as articulated by the National Federation of the Blind, has been tested by thousands of blind people over several decades now, and it works. The blind have found that the means by which a blind child or adult accomplishes something may be different, but the end result should measure up to what we would expect from the sighted.
"The Pros and Cons of Preferential Treatment for the Blind," by Dr. Jacobus tenBroek, is one of the best articles I have ever read on the subject of the rights, responsibilities, and special needs of the blind. Although this article was written some years ago and much has changed in the meantime, the principles he laid down then are as relevant today as they were at the time of their writing. With this letter, I am enclosing that article as well as a speech by Dr. Kenneth Jernigan, "Blindness--The Pattern of Freedom." Dr. tenBroek was the founder of the National Federation of the Blind, and Dr. Jernigan is the current Executive Director of our organization.
Let me now go back for a moment to the question you raise in your letter about who should find and pay for a regular preschool for your daughter--the agency or the parents. Basically I believe that parents of blind children should do whatever is expected of other parents. For most regular preschool programs that means digging into our own pockets. I have three children, two sighted and one blind. We selected and paid the fees for preschool programs for all three of them. Our blind son attended a private Montessori program because we thought it would be more challenging for him. (He is also considered gifted and currently takes special classes offered to all gifted sixth graders at the public school he now attends.)
By the way, I do concede that there may be situations in which an agency should pay for the average blind child to attend a regular preschool. Even so, parents should always carefully weigh the costs, and I don't just mean dollars and cents. We have all heard the adages about purse strings and power and how nothing in life is free. That doesn't mean we should never accept services and materials for our children that are needed and are available--especially if they are from public programs supported by our tax dollars--only that we should always be aware of the full price we are paying.
I have one more comment to make about blindness and the education of blind children. In your letter you say that "[we] realize that [Laura] will need continuing special education to maintain her high performance." If you mean by this that your daughter needs instruction in the alternative techniques of blindness and the means of getting materials in a form she can use (such as Braille and taped textbooks), that is certainly true—but only up to a point. Eventually she will no longer need Braille instruction or orientation and mobility. At least by the time she enters college, she will no longer need anyone else to order her Braille and taped books or run interference with a skeptical teacher or professor. She will do it herself. She will know how to find and train her own readers and get wherever she needs to go without the help of parents or professionals. She will do her own laundry, cook her own meals, manage her own career, pay her own taxes, and probably raise some grandchildren for you.
There are those, however, who believe that the disability of blindness is so profound and pervasive that a blind person must rely upon lifelong assistance from professionals in order to achieve maximum independence. A great many professionals believe this; members of the public believe it; and, though their numbers are decreasing, there are blind people who believe it. Parents of young blind children are especially vulnerable to this false philosophy. It is easy for us to become dependent upon the professionals who are there when we most need someone to provide us with help, hope, and guidance. Not only do we become dependent upon them, but we develop a distorted perspective about how and why our children learn. We often discount the role we play as the child's natural teacher and overlook the part played by his or her own innate will and drive to learn. Instead, we begin to believe that only the professionals can hold the key to the blind child's success in life, but that just isn't the way it works!
I think most people fall somewhere between these two philosophies of blindness. I know I do. But since everything in the world is constantly changing, parents will not stay in one place on that spectrum. We will be moving toward either one view or the other. We will either come to believe more and more in the normality and equality of the blind, or we will become more convinced that blindness is a profound limitation.
As I look again at your letter, I realize that I have probably not answered your questions in the way that you expected, but I have given you, as I promised, the best answers I could. Please get in touch with me if you have questions or want to discuss any part of this letter. You can call me at home or at the National Federation of the Blind office, (410) 659-9314.
Barbara Cheadle, Editor
National Federation of the Blind