From Emotions to Advocacy
The Special Education Survival Guide by Pam & Pete Wright
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Year in Review Series
I know they think Brian’s problems are my fault. When I said that I thought he needed more individual help from the LD teacher, they shook their heads. They only "do collaborative" now. They told me I shouldn’t use the word "dyslexia" because it sounds so hopeless. Then they asked how my husband and I wre getting along! (Denise, mother of a boy diagnosed with emotional problems, later found to have severe dyslexia.)
The school psychologist said that all these school problems were Shannon’s fault. He said that she was lazy and unmotivated and that we needed to pressure her to work harder. We didn’t allow her to watch television. We didn't allow her to go out with friends. She got terribly depressed. Homework took hours to complete, even when we helped her. We didn’t know what else to do. We didn’t want to raise a lazy child. (Emory and Elaine Carter, Shannon’s parents, before they learned that their daughter had dyslexia and ADHD. See Florence County School District Four v. Shannon Carter, 510 U.S. 7, (1993).
Parents of special ed kids often say that they are intimidated, patronized and made to feel guilty and inadequate by staff at their children’s school. These parents feel helpless, frustrated, and defensive. Not surprisingly, parents behave exactly like other human beings when they are blamed or attacked. Feeling threatened and uncomfortable, most parents try to explain and justify their position, in hopes that they will be understood. A few go on the offense, firing volleys of blame back. Many parents find these experiences exquisitely painful and humiliating. If they withdraw and try to avoid school functions, they find that they've been labeled as "uninvolved parents." Again, they are blamed for their children’s learning problems.
Sometimes, emotions get out of control. Feelings of anger, bitterness, and betrayal consume parents and school personnel - who are then unable to work together to make educational decisions. In these cases, everyone loses. The child is usually the biggest loser if the parents and educators cannot work together effectively.
What is the basis for these negative experiences? Are parents too sensitive? Do they misperceive and misunderstand what happens in their contacts with educators? Or are parents just over-protective of their children, as many educators claim?
If you are a "special ed" parent, you know that it's hard to fight - and almost impossible to bail out. If your child receives special education services, you have to attend school meetings and you have to cooperate in developing your child’s IEPs. How can you do this?
And here's another question: If the school staff believes that you or your child are responsible for your child’s problems, how can you work with them so your child’s interests are protected? How can you ensure that your child gets a good quality education?
If you have run into a "brick wall" of resistance when you tried to obtain changes in your child’s educational program, you need to understand how schools really work. You need to understand "school culture" and the beliefs held by many educators, school psychologists, administrators, and guidance counselors.
Dr. Galen Alessi, Professor of Psychology at Western Michigan University, conducted a fascinating study on school psychologists. Dr. Alessi’s study illustrates why so many parents have problems dealing with schools. Dr. Alessi’s article is "Diagnosis Diagnosed: A Systemic Reaction" published in Professional School Psychology, 3(2), 145-151.
The primary role of the school psychologist is to evaluate children to determine the reasons for learning and behavior problems. According to Dr. Alessi, when a child has trouble learning or behaving in school, the source of the child's problem can usually be traced to one or more of five causes.
The school psychologists were surveyed about the number of children they evaluated during the past year for learning problems. The average number was about 120 cases (or kids). These numbers were rounded to 100 cases for each of the 50 psychologists for a total of 5,000 cases.
Alessi asked these psychologists how many reports they wrote in which they concluded that the child’s learning problem was mainly due to curriculum factors. "The answer was usually none. All cases out of the 5,000 examined confirmed that their schools somehow had been fortunate enough to have adopted only the most effective basal curricula." (Page 148)
Next, he asked how many reports concluded that the referring problem was due primarily to inappropriate teaching practices. "The answer also was none. All cases out of the 5,000 examined proved that their districts had been fortunate enough to have hired only the most skilled, dedicated, and best prepared teachers in the land." (Page 149)
Then, he asked the psychologists how many of their reports found that the problem was due mainly to faulty school administrative factors. "The answer again was none. All cases out of 5,000 examined demonstrated that their districts had hired and retained only the nation’s very best and brightest school administrators." (Page 149)
Finally, I asked how many reports concluded that child factors were primarily responsible for the referred problem. The answer was 100%. These 5,000 positive findings uncovered the true weak link in the educational process in these districts: the children themselves.
If only these districts had better functioning children with a few more supportive parents, there would be no educational difficulties. (Page 149)
Based on the results of these 5,000 reports prepared by school psychologists, "the results indicate clearly no need to improve curricula, teaching practices, nor school administrative practices and management. The only needs somehow involve improving the stock of children enrolled in the system, and some of their parents." (Page 149)
Alessi expressed serious concerns. If school psychologists always define children’s learning problems as existing solely within the child, "it is equally unclear how school psychologists can help resolve this kind of problem. School psychologists seem to define school problems in ways that cannot be resolved."
When Dr. Alessi shared his results with the school psychologists, many protested that "all five factors are indeed responsible for school problems in the cases they studied, but that informal school policy (or ‘school culture’) dictates that conclusions be limited to child and family factors.
Many feel that they could lose their jobs were they to invoke school-related factors. Certainly, they claim, their professional lives would be made very uncomfortable . . . The fact remains that no school psychologist in the group had determined that any existing problems were due to school-related factors." (Page 149)
Alessi discussed several additional reasons for the prevailing "child-as-the-problem" perspective of school psychologists. Graduate school programs focus on child problems and ignore or exclude school-related factors. Workshops and papers presented at school psychology conferences share the "child-as-the-problem" focus. Most school psychology journals focus exclusively on child factors.
School psychology textbooks have a clear "child-as-the-problem" bias. After examining several "mainstream" school psychology texts, Alessi found that when assessing children’s reading problems, school factors were mentioned as a factor between 7% and 0% (zero) of the time. "Child factors" were held responsible for reading problems between 90% to 100% of the time.
Citing a classic book on reading disability, Alessi noted that it included no chapters about the connection between reading problems and school factors. The entire book focused on "child factors." (Page 150)
The "child-as-the-problem" bias also pervades school psychology research and practice. Alessi referenced one work that presented an extensive review of the research on learning disabilities. "Of the approximately 1,000 studies reviewed, not one examined the relation between school factors and learning disabilities." (Page 150)
In conclusion, Alessi observed that "Parents trust school psychologists not to adopt assessment practices that are inherently biased in ways that could hinder, rather than help, their children." (Page 148)
Dr. Alessi discussed the "ethical burdens" on school psychologists:
He posed some questions: (Page 150)
Is the role of the school psychologist
to label children to help schools avoid improving faulty educational practices,
or to help schools improve faulty educational practices to avoid labeling
Implications for Parents
As the parents of a special education child, what does this study tell you? If you believe that the staff at your child’s school are not willing to look at what they need to do differently to help your child learn, this study suggests you may be right.
If you believe that you and/or your child are being blamed for your child’s learning problems, this study suggests that you may be right.
And if you believe that school factors (i.e., an inappropriate curriculum, faulty teaching, ineffective school administration and management practices) are contributing to your child’s problems, you may be right.
What are the implications of this study for you, the parent of a special needs child? Your job is to work with the school system to secure educational services for your child.
You need accurate information from psychological and educational evaluations. Only then can you and the school staff make decisions about an appropriate educational program. If you cannot rely on school employees to provide this information, where can you get it? Should you ask the school to refer your child out for an "independent educational evaluation?"
You have learned that many people who work in schools share a belief that the problems they have teaching children have little or nothing to do with the curriculum, their own training and experience, or school administrative factors. Instead, they believe that the child’s problems are caused by the child himself.
Many people who work in schools -- school psychologists, guidance counselors, principals, and special education directors -- share this belief. Because school staff associate with other school staff, they continually reinforce the view of the "child-as-the-problem" in their dealings with one another.
As a parent, can you force educators and school psychologists to change their beliefs? Think about it. This view of the "child-as-the-problem" exists and persists because it serves a purpose.
What would happen if the next time you attended an IEP meeting, the school staff told you that your child’s worsening problems were due to an inappropriate curriculum? Inadequately trained teachers? An incompetent principal? This won't happen.
As the parent of a special ed child, your job is to negotiate with school staff to secure a good quality special education program. In your role as a negotiator, what do you need to know?
The single most important tool of an effective negotiator is to understand and be able to explain the position of the "other side" – as well or better than your own!
If you understand the beliefs and perceptions of the school staff, you will be in a stronger position. You are more likely to accomplish your objective. When you understand how school people think and what they believe, you'll be able to generate "win-win solutions" that meet your child's needs -- and theirs.
To accomplish your objective, you have to obtain accurate information about your child. This information includes the results of different psychological and educational tests. If you don't have good quality private sector diagnostic evaluations, you wont' be able to develop an appropriate educational program for your child. Knowing that school psychologists are often biased, what options do you have?
Parents ask: "Why can’t I tell the school that I want an independent educational evaluation done on my child? Money is short. Private testing is expensive. Aren’t we are entitled to this?"
Before we answer your question, let’s change the facts.
If you belong to a "managed care" health plan, you have a primary care doctor. This person entered into a contractual agreement with your insurance company, and agreed to abide by certain rules. The most important rule is that this doctor agreed to hold medical costs down by "managing care." How does this work?
In "managed care," your primary care doctor acts as a "gatekeeper," regulating (limiting) your access to medical treatment. If you go to a specialist without an "appropriate" referral by your primary care doctor, your insurance company does not have to pay for your treatment. If your doctor is successful in holding costs down, the insurance company will reward him or her with financial bonuses. If your doctor isn't willing to play by these rules, the insurance company will probably cancel his contract. He will lose you and many other patients – and his livelihood.
Now, let’s assume that you have a sick child. You take your child to your primary care doctor who works for the managed care plan. Although the doctor makes a diagnosis and prescribes treatment, your child is getting sicker. You ask for a referral to a specialist. After discussion and disagreement, the doctor refers your child to a specialist – who is also a member of the managed care plan.
This specialist signed a contract with the managed care entity in which he is forbidden to fully inform you about the treatment options for your child. He is under a "gag order." If you learn about these treatments, you'll want them for your child. The best solution from the insurance companies perspective is to keep you ignorant about these treatment options. because your HMO or managed care group does not want to pay for them.
Do you want your sick child treated by doctors who are not permitted to inform you about certain (expensive) treatment options? Of course not! Your child’s health is at stake.
Now, let’s return to your question about independent evaluations. Earlier in this article, you learned that most school psychologists officially consider only child or family factors when they assess children’s learning and behavior problems. Aren’t things different with independent evaluators?
The relationship between "independent evaluators" and school districts is similar to the relationship between managed care specialists and insurance companies. In many jurisdictions, people who are on the "approved list" of independent evaluators agreed to abide by certain "rules." They agree to perform evaluations on children and they are paid by the school district.
As a parent, you have to ask yourself this question: If my evaluator is paid by the school district, how independent can he or she be?
In our practice, we see many cases in which an independent educational evaluator recommends that a child receive more or different special education serves than the district wants to provide. After making "pro-child" recommendations, these diagnosticians were dropped from the school district’s "approved list" of evaluators.
You have to get comprehensive evaluations on your child from experts who are truly independent. The evaluations that are used to make educational decisions must contain accurate information about what your child really needs – including changes that should be made in curriculum, teaching methods, and/or school structure. The only people you can trust to provide you with this information are experts in the private sector.
If parents want to get unbiased information, they have to pay for it. Many parents are financially strapped. Children with special needs are expensive.
Please remember that children can "do without" many things they want and not be damaged. But your child needs an appropriate education. The most meaningful gift parents can make to their children is the gift of a good education. This gift will pay dividends for the rest of the child’s life.
If you are the parent of a "special ed" child, you need to understand "how schools work", including "school culture" and beliefs. You don’t have to accept it but you do need to understand it. When you understand "school culture" you'll see that it helps explain many of the obstacles you face as you advocate for your child.
Your job remains the same. You need to focus your energy on what you need to learn and do to obtain an appropriate education for your child.
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