Children with Disabilities

William J. Bennett; book excerpt

All parents have solemn responsibilities for the education of their young, but nowhere are such duties weightier or more difficult than when a child has a disability. If yours does, or if you have observed a worrisome delay in his development, you are surely upset and at least a little bit confused. Some parents in this situation also find themselves feeling angry, guilty, and beleaguered. Here is how Patricia McGill Smith, director of the National Parent Council on Disabilities, describes these reactions:

When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated—and so confused that I recall little else about those first days other than the heartbreak…. Another parent describes the trauma as “having a knife stuck” in her heart.

Do not despair. You are in a difficult situation, one you did not seek or expect to be in, but much can be done. There are many sources of information and help. Millions of other parents who have trod this rocky road ahead of you are glad to offer guidance, encouragement, and assistance.

The next few pages will introduce you to this complex topic. Educating children with disabilities spans a host of issues, however, and we are able only to touch on a few key points. …

We begin with three general guidelines:

• Start early. If your child does turn out to have a disability, the sooner you begin to deal with it, the brighter will be his prospects for a successful education and fulfilling life. Start early, both with the evaluation and diagnosis process and with the development and implementation of an education plan. Every state is supposed to provide early-intervention services for infants, toddlers, and preschoolers with disabilities. These include evaluation and, if your child is found eligible, the development (with you) of an individual plan for services for your child and your family.
• Get help. Don’t be ashamed to seek it, and don’t be too busy to accept it. You may be dealing with a complicated assortment of medical, psychological, educational, and emotional factors. It’s not unusual for technology to play a role, too. There are people who have expertise in these various areas. Make use of them.
• Take charge. You may not think there are many pluses to being the parent of a disabled child, but here is some good news: under today’s laws and policies in the United States, you have more to say about the education of your child—more rights, more involvement, more decision-making authority, and, yes, more responsibility—than do the parents of youngsters without disabilities. Expect to find yourself dealing with many different specialists, many divergent opinions, many conflicting regulations, and a lot of bureaucracy. Make yourself captain of this ship. Take control, think positively, and steel yourself for a long voyage.

What Is “Special Education”?

The term “special education” means individualized instruction designed to meet the unique needs of students with physical, mental, emotional, behavioral, or learning-related disabilities. In other words, it is education for youngsters who have some sort of problem that hinders their ability to learn successfully in a regular classroom using conventional teaching approaches. There was a time in this country when children with disabilities did not get a good shot at a proper education. That began to change in 1975 (earlier in some states) with passage of federal legislation now known as the Individuals with Disabilities Education Act, or IDEA. This law requires school districts to provide “free appropriate public education” to children with disabilities and learning problems.

According to the U.S. Department of Education, about five and a half million children—approximately twelve out of every 100 students—are presently classified as disabled. For example, youngsters who have difficulty seeing, hearing, or walking might be categorized as having an educational disability. So might children with mental retardation, chronic illness, emotional disturbance, brain or spinal cord injury, genetic conditions such as Down syndrome, or serious social maladjustment. The key is that the child’s condition must interfere with his ability to learn.

“Disabilities” come in many different categories, often in combinations. Every youngster is a unique collection of capabilities and limitations. The idea of modern special education is to tailor an education program to the specific needs of a particular child, maximizing his strengths, compensating for (and where possible circumnavigating) his weaknesses. To the greatest degree appropriate to the child, he must be given access to the standard curriculum, helped to attain the academic standards of his school or state, and included in the life and activities of his school.

This can take some doing. If a child has a disability that affects his learning, placing him in a conventional classroom staffed only by a regular teacher may not work well. More is often needed. That may mean speech or occupational therapy, special tutoring, or medical assistance. It may involve physical accommodation (e.g., wheelchair access), special learning tools (e.g., Braille books and computers), or extra help (e.g., a nurse or classroom aide).

All this and more is possible in U.S. schools. Indeed, if your disabled child needs it for his education to succeed, he has a legal right to it, and you have the right to be involved in making these decisions.

Special ed is complicated and fraught with challenges. It is often controversial. (Those extra services, people, and equipment make a dent in the school system’s budget, and the federal and state dollars supplied for these purposes are rarely sufficient to cover the full costs.) From the parent’s standpoint, however, your job is to get the best education you can for your child. And that begins with an accurate evaluation of his situation.

Identification and Evaluation

Public school systems are supposed to have “child-find” strategies for locating disabled or handicapped children starting at birth. The system is obliged under federal law to provide special education services even for preschoolers. That’s because of the educational value of starting early. In some states, health departments, social service agencies, and other organizations participate in these child-find activities.

Unfortunately, it doesn’t always work the way it’s supposed to. School systems are bureaucracies. Their budgets are not infinite. They are primarily concerned with the youngsters already enrolled in their schools. They are seldom fully reimbursed by federal or state programs, and therefore every additional disabled child whom they “identify” is likely to add to their fiscal burdens. So don’t wait for the system to come seeking your child. If you, a preschool teacher, a pediatrician, or daycare provider suspects that your child has a developmental delay or other disability, make it your business to look into it.

Do not panic. Just as a new parent is apt to assume that a baby’s sniffle must mean pneumonia, so you may hastily conclude from the fact that your child is not walking or talking as soon as you think he should that something terrible is wrong. Please keep in mind that little children develop in different ways and at different rates, and they acquire various abilities at different ages. The fact that a new talker is hard to understand does not necessarily mean he has a speech impediment. It may just mean he hasn’t yet had much practice.

While resisting panic, don’t hesitate to convey your concern to your doctor or seek a consultation with a child development specialist. You may also contact your local school system and your state’s early intervention program for infants and toddlers. These agencies can help you decide whether your child needs evaluation. If they recommend some tests, it’s probably a good idea. If your child has a physical disability, injury, birth defect, or genetic condition, you probably already know it. If the issue is a developmental delay or possible learning disability, however, some sophisticated tests may be needed to find out what’s going on.

What if your child is already in school? Either parents or school may begin the process of determining whether a disability is contributing to a learning problem. Often it’s moms and dads who first raise a red flag; they, after all, are most closely attuned to their child’s welfare. If you think your youngster might have a disability that is interfering with his learning, talk with the teacher, principal, or school psychologist. Ask that your child be referred for a formal evaluation. Do not let school officials put you off while they wait to “see how he does.”

If the teacher first suspects a problem, the school will probably get in touch with you and schedule a meeting. The staff will explain why they think your child should be referred for an evaluation, what procedures are involved, and what your rights are. They should give you this information in writing. They will ask for your written consent to conduct an evaluation and should explain how you can participate in the process. Since 1997, under federal law, you have the right to take part throughout, including decisions about what tests and other diagnostic procedures will be undertaken with your child.

No matter what the disability—even an obvious physical handicap—before a child can qualify for special education and related services, he needs a formal evaluation. (Indeed, under federal law he must be reevaluated at least every three years in case his condition changes. A vision problem, for example, might get more severe. A developmental problem might ease.) Think of this as a diagnostic process that must precede the development of an individualized education program (IEP) for your child. The school system will certainly be involved with it, but you may have to ask for it, or get a referral from your pediatrician or other expert.

Be prepared for a number of tests by a team of professionals, probably including teachers, a school psychologist, a learning disabilities specialist, a physician, and perhaps a school social worker. This team will look closely at factors such as your child’s physical health, reasoning abilities, reading skills, emotional state, and social adjustment. The assessment must be provided by public schools at no cost to parents.

After these tests, the evaluation team reviews the results and recommends whether or not special education is appropriate. It will also suggest any “related services” that might benefit your child. These can include such things as physical therapy, social work and counseling, occupational therapy, help with speech or language, mobility and transportation aid, and medical-type procedures that may be necessary for the youngster to take full advantage of his educational opportunities.

If you’re not sure of the school system’s diagnosis or have doubts about the recommendations, seek a second opinion. You may wish to have your child tested by a doctor or psychologist who does not work for the school system. (Under certain circumstances, the school system will even pay for such an evaluation—and it is supposed to give you that information.) Or you may wish to take a copy of the school’s test results to an outside specialist to get another analysis of the data and another set of recommendations. Be aware that differing diagnoses and conflicting opinions are not uncommon, especially in the area of learning disabilities. Be aware, too, that the school’s recommendations may be colored by what resources it has available.

If you decide to have private testing done, look for a specialist experienced with children who have disabilities similar to your child’s. Often, the best way to start is with a private agency that specializes in the education of all manner of disabled children and either has many different specialists on staff or has lists of them at hand for referrals.

If your child is under three years of age, and has a disability or developmental delay, educational services should be provided by your state’s early-intervention system. The requirements for this program resemble those for school-age children. Depending on your state, it may be located in the education system or health, social services, or other human services agencies. You can check with the governor’s office to find out how to locate it.

Learning Disabilities

If your child has a physical or emotional handicap or significant retardation, it is likely that you knew this well before he reached school age. That is why a huge fraction of the initial diagnoses that take place among youngsters who are already in school involve the knotty area called “learning disabilities” or “learning disorders.” Indeed, these now account for more than half of all special education students.

There is, unfortunately, no commonly accepted definition of the term “learning disability.” It’s a nebulous label that is often—some say too often—applied to intelligent children who for some reason have problems learning in the same ways or at the same rate as other children but who apparently do not have more “traditional” disabilities such as physical and emotional handicaps.

Learning disabilities are generally believed to result from some neurological dysfunction within the child. They take several forms with names such as hyperactivity, dyslexia, minimal brain damage, and perceptual impairment. An extremely bright child who struggles with reading, no matter how much time he spends with books, might be classified as learning disabled. So might a child who is a good reader but has trouble writing words on paper. Other examples of students who may have a learning disability are those with very weak verbal skills for their age, those who can’t seem to remember information that they hear, and those with difficulty concentrating on a given task.

The fact that there is no concise definition of “learning disability” is a clue that this is a complicated, contentious, and somewhat murky area. It’s gotten even murkier as the number of diagnoses has soared in recent years. Some people now estimate that up to 20 percent of Americans may be learning disabled. That would mean that one out of every five schoolchildren is a candidate for special education. Such numbers naturally generate controversy. They make us wonder: Is there really something out of the ordinary with that many children? Why is their number rising so fast?

Skeptics argue that there is no proof of neurological defects in some students who have been identified as learning disabled. They point out that no one can say exactly what causes some children to have learning disabilities, and that there is no consistent set of symptoms. Diagnoses may be based more on judgment, opinion, and preference than medical evidence. A child who is characterized as “disobedient” and “argumentative” in one school might be described as having “oppositional defiant disorder” in another.

Some educators and doctors worry that we’re going too far in “medicalizing” children’s education problems, some of which might be successfully dealt with through the right mix of early academic help, expert teaching, good discipline, perseverance, and adult attention. The term “learning disability,” they say, has become a handy management option for schools, an easy rationale for a teacher or principal to direct a child toward special education when in reality the school isn’t doing a very good job of teaching him. It is also unfortunate but true that some administrators of special education programs are eager to maximize the number of children in their domains because bigger numbers bring larger budgets and greater prestige. (The flip side, many angry parents attest, is that, since special education can be costly for the school system as a whole, other officials build bureaucratic barriers that make it hard for disabled children to get the help they need.)

Policy arguments aside, be aware that the broad phrase “learning disability” does not itself constitute a legal category that qualifies a youngster for special education. Instead, it’s an umbrella term covering many different conditions. Only if your child is found to have one (or more) of those conditions—a “specific learning disability” is the official term—is he a candidate for special education.

Be aware, too, that for all the talk of “attention deficit disorder” (ADD) and “attention deficit hyperactive disorder” (ADHD), this is not a “specific learning disability” in its own right. It is not unusual, however, for ADD to appear together with a specific disability that causes the youngster affected by it to qualify for special education. In that case, dealing with the interplay between the specific disability and the ADD problem becomes part of the child’s individualized education program.

Developing a Plan

If the evaluation process suggests that your child does, in fact, have a disability affecting his education, he is a candidate for “special” education.

Some parents resist this conclusion. Some feel ashamed or want to deny the problem. Others resist because they have heard troubling things about special ed, about how it’s a vast bureaucracy, an endless maze, a cul-de-sac from which few children emerge with a good education. Others suspect—sometimes with good reason—that the teacher or school claims to have found a “disability” in their child when a more accurate statement of the problem is that educators haven’t done a good job of teaching him basic skills.

Especially if the diagnosis is “mild learning disability,” you may want to explore some options before boarding the special education ship. You may want to see whether a different teacher, extra tutoring, and some additional help from you at home can boost your youngster back onto a successful trajectory. Some parents change schools because they believe their children’s special learning needs can be better met in a different setting, or because they have misgivings about the local school system’s approach to special education. This is a fairly frequent reason for choosing charter schools, for example, many of which are designed especially for disabled youngsters.

It pays to be cautious and to examine alternatives. Special ed referrals are not always warranted. Some school systems have weak special ed programs that do not serve the youngsters in them well. Others have outstanding programs that do a terrific job. Most common is something in between, the sort of program that ends up being pretty much what you make of it.

But don’t be so cautious that you serve your child badly. Many disabled children do benefit from appropriate specialized instruction and extra help. Your first thought should be to get the problem diagnosed and then apply the appropriate remedy. A good special ed program may be just what your child needs to reach his greatest potential. Your foremost responsibility is to ensure that he succeeds. Don’t hold back for reasons of shame or guilt. We’ve seen situations where, for example, parents keep shifting their youngster from one school to another— sometimes after just a few weeks or months—in a desperate quest to avoid recognizing that the problem isn’t just the school and that the child actually has a disability that would benefit from being acknowledged and addressed.

Such parents are anguished and upset. This is not an easy situation. We suggest trying to adopt an attitude like this: My child and I are going to take advantage of every bit of available help, and the process of getting and shaping that help is going to yield real benefit in terms of his learning. But that doesn’t mean just handing my child over to experts. I must remain the captain of this ship. And if I conclude, after a fair test, that we’re on the wrong vessel, we can move to another one.

The guiding force in any child’s experience with special education is his IEP, his individualized education program. Think of writing this document as seizing the opportunity to mold his education to his needs and abilities, an opportunity that U.S. public education—wrongly, in our view—does not routinely make available to other parents and children.

The IEP spells out the details of your child’s education program and daily instruction, as well as related services that are deemed necessary to making a successful education possible for him. This important document (which must be reviewed and renewed at least annually) serves as the blueprint for the school’s handling of your child’s education. You should take part—with the team of educators, experts, and specialists whose responsibility this is—in developing the IEP. It cannot be put into operation without your signature, but it is apt to be a much better plan if you play an active role in its construction.

Some wise veterans of the special ed world advise you to bear in mind that “special education is a service, not a place.” The heart of an IEP is not only deciding where your child will be instructed—in the regular classroom, a “resource room,” or other setting—but also what the contents of that education will be. Under federal law, a child in special education must have access to the school’s regular curriculum. This means that, in addition to whatever specialized learning objectives a youngster may need, the eventual goal is for him to learn what other students are learning. Yes, it may require suitable modifications of instructional strategy and pace. It may also require extra help. All these should be calibrated to the child’s own strengths and weaknesses. But whereas special education once focused on ensuring that a disabled youngster simply received “education services,” in recent years the emphasis has properly shifted to the content of what that child is learning, the education outcomes that he will attain, the quality of his school experience, and accountability for its results. Figuring all that out should be the core of an IEP.

Not every school system has successfully navigated this change of emphasis, however, so it’s important that you remain vigilant. As you help design the education program for your child, keep these questions in mind: Where does it lead? Are its goals closely aligned with the general curriculum and the school’s standards? How will we know if it’s succeeding? What will be the benchmarks and measures of progress? Who is responsible for its results? What is their track record? When are our opportunities for mid-course corrections?

Deciding on the Placement

Closely tied to these vital decisions about the IEP’s content and direction are key judgments about the child’s proper “placement”—that is, selection of the appropriate education setting (or settings) in which the plan will be put into effect. Special ed may not be a place, but at any given moment this service has to be provided somewhere.

There are many ways to design special education placements. Lots of combinations and variations are possible, and they may evolve in light of a child’s experience and accomplishment.

Most children receive the greater part of their education in the regular classroom. Some remain there full-time, while others leave periodically to work with a special ed teacher in a “resource room” or other setting. Youngsters with more serious disabilities may be in a special ed classroom for much or even all of the day. Depending on the disability, a child may attend classes at a school that specializes in programs tailored to needs such as his. Some disabled youngsters even attend private schools because their parents, often with the help of attorneys, successfully argue that the child’s needs cannot be satisfactorily met by the local public school system. (This is a complex and controversial topic but you should be aware that, under federal law and some state laws, publicly financed private schooling is an option for disabled youngsters in circumstances where the public school is unable to provide an appropriate education.)

By law, a disabled student must be educated in the “least restrictive environment,” which ordinarily means including him to the maximum possible extent in regular schools and classrooms while recognizing that this placement may mean modifying what happens in those classrooms. The teacher, for example, may need additional training or assistance. The child may also need help in order to succeed in the regular classroom setting. Such help can be fairly straightforward—a desk at the front of the room, for example, or a technological device that assists him to see or hear or get around. (There have been remarkable advances on this front. If your child has a physical disability, make sure you explore the ever-growing array of hardware and software resources.) The help your child requires may also mean additional personnel in school: an instructional aide who joins him in class for part of the day, for example, occasionally even a full-time attendant. If your child is under three, services must be provided in a “natural environment” that’s suited to the youngster’s needs. (Natural environments mean places like home and child care where children of this age usually spend their days.)

Most special education experts and parents of disabled children feel strongly that the greatest possible inclusion is best. They point out that disabled youngsters benefit from positive interaction with their peers, from having role models and friends, and from the sense that they have not been segregated, isolated, or shunted aside. They note that segregating such children is both unfair and educationally damaging, that teachers may lower their expectations when all their students have disabilities, and that separate special ed classes can mean inferior education for children who are treated, in effect, as second-class students. Mainstreaming, in this view, offers the chance for higher expectations and more challenging studies. It builds confidence and social skills, helps remove the stigma of being a “special ed student,” and fosters understanding among nondisabled peers.

At the same time, inclusion or mainstreaming remains controversial. Critics say that researchers have not yet proven that it leads to improved academic outcomes, and that disabled students are more likely to get necessary help in a smaller class that’s specifically geared to them. They say it is wrong to place a child in a regular classroom where the teacher is not trained to deal with disabilities and may lack essential help. They say this leads to classroom disruption and can result in inferior education for everyone. A child who is mainstreamed most of the day but occasionally leaves for specialized instruction may miss important lessons while he is away and fall further behind in his regular studies. Mainstreaming, critics maintain, is often little more than an attempt by school systems to save money at the expense of needy students.

That’s the controversy. As a parent, you are probably less interested in policy debates than in ensuring that your child has the right placement. You know that what works well for one student may be less successful for another. That’s why you must watch carefully to see if your child’s needs are being met, wherever it is taking place. Remain focused on the quality of the academic program. What is most important is that he be in a setting where the curriculum is solid, expectations are appropriately high, and he can get the instruction and services that he needs to meet them.

Special education shares with other spheres of American education the problem of underchallenging many students. Parents often go along, either because they aren’t aware of how little is actually being expected or because they want their kids to earn good grades, be happy, and avoid stress. This is misguided. What disabled children need most from their schooling is the chance to compensate for and cope with their disabilities, and succeed to the greatest possible extent in spite of them. Education for a disabled youngster should not be primarily about accommodation, social acceptance, or self-esteem, although these are important. It should be about preparing to live successfully in the same world as others. Toward that end, you want your child in a program where he will be called upon to work hard and live up to his full potential.

Looking Out for Your Child

Gather information—and then keep gathering more at every step along the way. Don’t settle for just one expert opinion. There are plenty of information sources available. Read. Ask questions. Form your own judgments. Join organizations that have years of experience with the education of disabled children.

Try to find other parents of children with disabilities and seek their assistance. They can advise you about questions to ask school officials and about strategies that have worked for them. They may also provide some welcome emotional support. In fact, you may want to join a parent support group. (A good source is the National Information Center for Children and Youth with Disabilities.)

Parents sometimes find that school systems try to skimp on services for disabled youngsters. You may encounter bureaucratic obstacles. Make sure you are familiar with the pertinent laws and procedures for your school system. Ask the person who oversees special education at your school to explain anything you don’t understand. Ask someone who’s been through the process before to help you.

As we noted earlier, disabled children and their parents enjoy special legal rights and opportunities. The legal side of special education is its own labyrinth, and it is possible to fall under the sway of an overeager attorney who loves to litigate (and who bills accordingly). Don’t rush to put your child’s education in the hands of a lawyer. But do recognize, especially if you find that the school system is failing your child and its bureaucracy is balking, that you have options under the law, perhaps most importantly including the right to exercise a very large say in your child’s education.

Vigilance is needed. You may work things out satisfactorily one year only to watch them come unglued the next because the school system, the teacher, or your child’s needs have changed. That’s why the IEP’s annual update is valuable, as is the requirement of a periodic reevaluation of your child’s condition.

All parents should monitor their children’s education closely, but special ed parents doubly so. It’s best to view yourself as your child’s “case manager.” Be prepared not only to participate in the planning of his education, but also, on many occasions, to take the lead. You may have to request conferences with school personnel, tutors, therapists, and psychologists. Do not assume that the specialists will regularly communicate with each other or with the classroom teacher. Do not assume that a carefully devised plan will be carried out with equal care, or that you will be notified of what’s not working.

Find out exactly what the teacher is doing and why. Check on the providers of related services and extra help. Watch your child’s progress and speak up if he does not make gains. Ask yourself: Is this program really giving him what he needs? No one knows your child like you do. No one else has his interests so much at heart. Be prepared to be an advocate for your child to see that he gets the chances he deserves.

William J. Bennett, The Educated Child