WHEN THE Education for All Handicapped Children Act (EHA) was enacted in 1975, two of its key provisions were that all children were entitled to a “free appropriate public education” in the “least restrictive environment” possible. The EHA was renamed the Individuals with Disabilities Education Act (IDEA) in 1990, and this federal law governs special education services to this day. In addition to requiring that each student with special needs receive an Individualized Education Program, the IDEA requires schools to take into consideration a student’s disability before imposing disciplinary measures, including suspensions and expulsions. It also gives parents the right to participate in the drafting of their children’s IEPs and take school districts to administrative hearings if the two sides cannot come to an agreement.
The law applies to children with any disability. But when the regulations implementing it were being drafted in the late 1970s, policy makers and regulators had a specific picture in mind of the students these regulations would affect. “Paul,” a colleague who had been involved in the effort in Washington once told me, “we were thinking of kids in wheelchairs.” That was a problem for children like Tim. Children with all kinds of chronic conditions form a pretty big picture, but the policy makers who design services often have only a narrow piece of the painting in mind.
It was one thing to make buildings accessible to children with physical disabilities—and even that took years—but quite another to make regular instructional programs available to children with developmental disabilities or emotional disturbances. Those of us in public office focused a great deal of attention on both of those things. But, like the regulators who wrote the rules, most of us did not even think about what it meant that children with emotional disturbances had the right to a “free appropriate public education.” If a child brings a gun to school as a result of a mental illness, does he have the right to remain in his school?
And education in the “least restrictive environment” means what it says. On a continuum, that first means education in regular schools and classrooms among peers without disabilities. If that is inappropriate for the child, then services in regular classrooms with additional supports (such as an aide) might be considered next. If that doesn’t work, then the child might be taken out of a regular classroom and educated in a special classroom for part of the day. Next, if the school has one, it might try a special classroom all day. Later on in the continuum, there might be special schools in the mix. But no matter what, the less restrictive environments must be considered first, and the least restrictive environment for that child must be chosen.
Given that children with emotional disturbances—the catch-all term the special educational system uses to describe children with a variety of mental illnesses—are sometimes disruptive in the classroom on account of their illness, how do we protect their right to education in the least restrictive environment, among peers without disabilities, without interfering with the instruction of other students in the classroom? This is not an easy question to answer, especially when the people who wrote the law didn’t really have it mind and were not really thinking about the supports and resources these children might need to succeed in school.
After passage of the EHA, many of the “Special School Districts” in which children with disabilities had been receiving their education disappeared as students returned to their community schools. The IDEA requires that students be classified in a category of disability. Some are more specific than others. The categories are autism, blindness, deafness, emotional disturbance, hearing impairment, intellectual disability, multiple disabilities, orthopedic impairment, other health impaired, specific learning disability, speech or language impairment, traumatic brain injury, and visual impairment. When Tim became eligible for special education, more than 12 percent of children in the United States were in special education programs (NCES 2012). More than 40 percent of these children were categorized as having learning disabilities, and nearly two-thirds had either learning disabilities or speech or language impairments. The percentages are similar today. Just over 13 percent of children are in special education; just under 60 percent of them are categorized as having learning disabilities or speech or language impairments.
Most children with mental illness are put in the category “Emotional Disturbance.” The number of children in this category who received special education services under IDEA grew from 283,000 in 1976 to 437,000 in 1995, around the time Tim entered special education. It fell back to 389,000—the lowest number in twenty years—by 2011 (NCES 2012). These children made up 1 percent of the school population in 1995, and make up only 0.8 percent today. Yet SAMHSA and NIMH both report that up to one in five children has a mental disorder in any given year, and NIMH reports that as many as 21.4 percent of teenagers have a severe mental disorder (Merikangas et al. 2010). In other words, for every child with an emotional disturbance who is in special education for that reason, roughly twenty more are not. And the discrepancy appears to worsen as children age.
Many parents are reluctant for their children to receive special education services because of what they perceive as a stigma, but I did not feel this way. I believed that Tim needed additional educational supports. I thought that he could benefit if his teachers focused less on his lack of organizational skills and more on mitigating his difficulties with attention, for example, more oral instead of written instruction and evaluation and targeted strategies—such as the possible use of a computer—to accommodate his writing challenges in particular. I also thought his instructional program might be revised to be more hands-on and that he would benefit from guided and supervised teamwork with his peers because of his difficulties in relating to other children.
I also felt that there was some urgency. Whatever services we decided on, the sooner he got them, the better off he would be. I was not worried about the cost; I knew that our school district had to provide appropriate services to Tim at no cost to us. By law, we as parents had to be invited to work with Tim’s teachers and the rest of the team to develop his IEP, and because Linda was a special education consultant, we had access to the best advocates and practitioners in the region to help us—an advantage most parents navigating this complex system do not enjoy. Finally, I was knowledgeable about the policy theory behind special education and felt comfortable in my ability to navigate the system. Not only had I served in the legislature, but in the 1990s I also taught special education policy as part of a graduate-level public policy course I developed.
Because they know their child best, parents are equal partners—at least in theory—with teachers, administrators, and other school professionals on the IEP team that drafts the education plan for their child (U.S. Code 2014). To facilitate parent involvement, the federal law requires that every state have at least one “Parent Training and Information Center” (PTI). But the truth is that educators have a tremendous home-court advantage when the team sits down to meet. The team schedules the meetings, chooses the location, prepares the agendas, and conducts the evaluations that define the issues to be discussed. They know the teaching environment, the jargon, and what resources they have at their disposal. And they usually outnumber the parents.
In Connecticut, the IEP team meeting was called the Planning and Placement Team (PPT) meeting. I attended my first PPT meeting for Tim in February 1993. I attended dozens more in the years that followed, and I learned from my own experiences many things about the practical limitations of PPTs that policy leaders did not anticipate. (I am sure others could add to this list.)
First, our PPT meetings were never long enough—especially if parents brought any of their own ideas to the table. The meetings were often shoehorned into the beginning or end of the school day to minimize intrusions into classroom time. They were also sometimes slotted into time periods of only fifteen or thirty minutes. Participants would often hurry through the meetings, with little time for discussion and debate. This invariably led to problems with plan implementation later on, which in turn required more hurried PPT meetings.
Second, every one of our meetings began with a review of our son’s educational progress. These status reports could take up most of the time allotted. Then we would have to reconvene to discuss the goals, objectives, and modifications to be included in his IEP. This was especially frustrating for me, because whenever we reconvened we would have to start again with the progress reports.
Third, because of the way the law was written and interpreted, the plans always spelled out goals and objectives for the child but never for the teachers or parents. For example, an objective might state: “Tim will complete 70 percent of his work on time.” This made Tim the only person accountable for meeting the objective. If he completed only 50 percent of his work on time, then Tim alone was responsible for the failure. I always thought it would be better to restate objectives to shift the burden. For example: “Tim’s parents will monitor his homework to assure that he completes 70 percent of his homework on time.” But when I asked for this kind of statement, I was told it wasn’t done that way; goals were for the children. That may be the law, but this lack of adult accountability for the achievement of IEP goals and objectives was my greatest frustration with the process when Tim fell short of his goals.
Fourth, in most cases, the school officials already knew what modifications they wanted to make before the PPT meeting began. Discussion was superfluous. Whenever I suggested a modification to Tim’s IEP, I found that if it fit into the framework the school personnel already had in mind, it was accepted at once. If it did not, I usually got back a blank stare or at best an offer to look into it later.
Fifth, money mattered. In theory, the federal government reimburses school districts for the costs of special education based on the assumption that it costs 40 percent more to educate a special education student. But the program isn’t fully funded. The federal government budgeted $12.6 billion for IDEA in fiscal year 2012—about half of what advocates claim is needed, according to the Federal Education Budget Project (2013). The balance is picked up by the states and the local school districts. So while decisions about special education services are supposed to be made without regard to local funding constraints, the opposite is often true. The greater the cost of the service, the more likely a decision about it will be deferred. This means that another PPT meeting has to be scheduled, which in turn means more delay in developing an IEP.
Our first PPT meeting should have resulted in some action. After all, Tim’s teachers had been documenting their concerns for over two years. We already had Dr. R’s recommendations and could have acted on some or all of those. But this is not what happened.
First, we reviewed Tim’s progress reports. Then the PPT formally accepted Dr. R’s report. Next we agreed to have the school’s reading consultant, occupational therapist, and psychologist conduct additional evaluations.
When Linda and I also requested an assistive technology evaluation to determine whether using a computer or other technology might help Tim, the principal said that the school could not make a decision about this until after the other three evaluations were completed. Then she adjourned the meeting before we could ask for a behavioral evaluation, too—something else that had been on our list.
So despite having teacher observations spanning more than two years, our experiences in parenting, and a formal evaluation from Dr. R to guide us, all we had accomplished was delay. It was the first of many delays to come.
And we still had some unanswered questions. Tim had what appeared to be learning disabilities, but which ones, and how significant were they? According to Dr. R’s evaluation, Tim had “attention dysfunction,” but how much did this contribute to his poor mastery of subject matter? He also had some behavioral issues. Were these related to a bigger behavioral health problem or not?
The school’s three consultants were supposed to help us find answers. They took about a month to do their work. The reading consultant weighed in first, informing us that, surprisingly, “Timothy is in the average range for all the standardized tests he has been given.” In fact, Tim always tested in the average range in ability, although his scores on oral IQ testing were considerably higher than his scores on written tests. The discrepancy helped to identify him as having a learning disability, but that was a double-edged sword. Because it seemed to account for so much of his poor academic performance, it diverted attention away from his illness.
The school psychologist’s report came next, confirming Dr. R’s observation that Tim’s attention issues were significant. “Timothy was on task less than 15% of the time, in short spans of 1 to 30 seconds,” she wrote.
However, she also found, somewhat paradoxically, that Tim engaged easily in classroom discussion. “The teacher then encouraged the class to generate a list of many varied and unusual things one could be an expert at. Tim’s facial expression showed more interest in this, as he turned to watch the children who were speaking. Near the end of this discussion, he raised his hand and offered the suggestion that he could be an expert at making people laugh. The children did in fact laugh at this and the teacher remarked good-naturedly that it must be true.”
The occupational therapist weighed in last. She wrote that some of Tim’s fine-motor problems would resolve themselves: “I feel that cursive handwriting will help Tim to gain speed in his writing. At this point, I do not see the need for me to do anything further with him.” But then she also recommended that Tim have the assistive technology evaluation we requested to help the school devise “a game approach to keyboarding” as part of Tim’s educational program modification.
What made me unhappy about these evaluations is that they did not really go far enough to justify waiting for educational modifications. They did not offer any evaluation of Tim’s behavioral issues, even though these seemed to be contributing to most of his difficulties. So Linda and I asked for an evaluation by a pediatric neurologist to rule out any physical causes for Tim’s problems. Our thinking was that we might seek a psychiatric evaluation after that.
The principal put us off for a couple of weeks. We repeated our request in writing and pushed for an April deadline to complete the evaluations. Two more weeks went by, and then the principal notified us that instead of asking for the additional evaluations she was scheduling another PPT meeting in May to review the evaluation findings to date.
At this meeting, I once again sat through the mandatory reports of Tim’s progress in the classroom. His reading, math computation, and “modified” spelling (his phonetic spelling was acceptable for the time being) were all satisfactory. His word decoding, mastery of math facts, and written expression, however, were not. His teacher also confirmed the observations of the consultants: “He is friendly with one boy in class, but is a loner much of the time.”
We formally accepted the reports of the three school consultants, adding them to Dr. R’s report, and then officially concluded that Tim had “one or more” learning disabilities. The record described him as having “great difficulty expressing ideas in writing, trouble staying focused,” “being ‘inattentive,” and requiring “a lot of extra prompting.”
We finally got around to setting educational goals for Tim. These included increasing positive participation in social and academic activities, increasing self-reliant behavior, and increasing self-esteem. I was a little surprised by these, because they seemed generic and did not have much to do with the evaluations we had just accepted. We then approved ten educational objectives, among them “Tim will advocate appropriately for himself,” “Tim will volunteer information when appropriate,” and “Tim will increase self-esteem.” These did not seem to have anything to do with the four evaluations in our possession.
Other objectives were at least targeted to Tim’s education, if not to the specific points in the evaluations. These included “Tim will complete modified math assignments,” “Tim will use an independent work organizer,” and “Tim will ask when he needs an extra copy of an assignment.”
Given the problems the school had documented, I asked whether these were the most relevant objectives for Tim and whether his progress in meeting them could even be measured. They were the first objectives I had ever seen, and the first thing I noticed was that they were worded in a way that put the burden on eight-year-old Tim, not on his educators or parents. So I brought this up, and I was informed that I did not know how to write objectives.
Perhaps as a concession, everyone finally agreed to something for the adults. We added a requirement for a “consistent system for homework between home and school,” and a “daily notebook between home and school.”
Finally, we agreed unanimously on a specific set of modifications and instructional accommodations. These included consumable textbooks, modifications in the amount of homework, and classroom seating near the teacher. Tim was also to be given fifteen minutes of unspecified direct special education services per day in the classroom.
There were still a couple of missing pieces: the assistive technology evaluation and the evaluation by a pediatric neurologist. Because of Dr. R’s finding of “attention dysfunction,” Tim’s pediatrician had also recommended that we not wait for the pediatric neurologist’s evaluation to try auditory integration training with Tim, a technique that seemed promising at the time, which involved using filtered music to mitigate the effects of ADD and improve concentration in children without the use of drugs. Linda and I asked the team to recommend all three. The principal replied that the PPT was not authorized to incur these expenditures without the prior consent of the school district. So we decided to move forward with the evaluation by the pediatric neurologist and pay for it ourselves.
Although we signed off on Tim’s IEP in May, none of the modifications or accommodations required by it was put in place that school year. Meanwhile, Tim was paying the price. His academic performance, which the school’s teachers and evaluators had reported to be satisfactory as recently as March, had fallen off so dramatically during the spring that he was no longer testing at grade level in reading, language arts, or math. Linda and I wrote to the principal in June expressing our concern about this and asking that the PPT be reconvened to address the inaction.
Despite his difficulties at school, Tim was still a generally happy and delightful boy toward the end of second grade. He completed a project titled “Tim’s Times,” for which he created a poster of pictures and narration to describe his life and aspirations. This was what he dictated:
Allow me to introduce myself. I am very proud to be a second grade student. I have a dog named Peggy. I am a boy and I have black hair and brown skin. My name is Timothy James Gionfriddo.
The most important person in my life is my dad. My dad is my best friend. My dad is a good worker. He is a consultant. My dad is very special to me.
I am an expert at making people laugh. I can look at them and make a funny face. Sometimes I just look at people and they laugh. It is easy to make friends laugh. I am very good at making people laugh.
Let’s look into my crystal ball. In my future I will be a basketball star. I will be very famous. I will be very good at making shots. Now you know about my future as a basketball star.
Tim’s self-esteem was about to change when he advanced to the third grade. After what would become another year without an IEP in place, his only aspiration would be to be the “school bully.”
That summer Tim had his appointment with the pediatric neurologist. She agreed that Tim had a language-based learning disability and also suggested a trial of Ritalin to manage his attention dysfunction, which she diagnosed as attention deficit disorder (now, ADHD). She recommended that she conduct a follow-up examination of Tim in the fall—something that we very much wanted the school district and PPT to endorse.
Linda and I had mixed feelings about the use of Ritalin. I knew that while it might help him focus, he had more problems than just lack of concentration. We still hadn’t sorted out the reasons for Tim’s behavioral problems, and I wasn’t sure that I wanted him on any medication before we did. Finally, we really wanted to try the auditory integration training Tim’s pediatrician had suggested to see if we could avoid medication entirely. So we decided to put off the Ritalin for a while.
According to the National Center for Health Statistics (NCHS 2012), the reported prevalence of ADD/ADHD around the time Tim was diagnosed was 7 percent; it has grown to 9 percent in recent years. In the late 1980s less than 1 percent of children used drugs like Ritalin to manage ADD/ADHD, a proportion that grew to 3 percent in the late 1990s and almost 4 percent by 2010. These rates create controversy today, and they created controversy then. It boils down to this: Are children overdiagnosed? Are children overmedicated? And can the side effects from treatment mask or mimic the symptoms of mental illness?
The principal eventually denied our June request for a PPT meeting during the summer but made a commitment to convene a “program review” with Tim’s third-grade teacher in late August.
But when the school year started, the principal had not yet scheduled the meeting with Tim’s teacher. More troubling, Tim’s IEP was also not being implemented. There were no consumable textbooks; instead, he was sent home with an assignment requiring him to copy math problems from a textbook. There was also no daily notebook from school to home. I started my own the next day. I wrote in it that copying was a problem for Tim and it hindered his ability to work on actual skills. When his teacher replied the next day, it was clear that she missed the point. “At this point of the year, copying numbers would have been good practice for him. I never know just how much someone forgets over the summer.”
Her response, although seemingly innocuous, suggested that she had not read Tim’s IEP. In her defense, she was only doing what most of Tim’s well-intentioned new teachers would do. At the beginning of the year, they tried not to be biased by what might have happened the year before, but sought to form their own impressions of their new students. “I’m just getting to know him” and “I’m treating him like every other student” were comments I often heard. The problem was that the new teacher’s impression was supposed to be biased by Tim’s IEP and by what had happened in the past. Neglecting Tim’s plan invariably undermined his opportunity for success.
Tim generally did pretty well at the start of the year. He had two strengths—an excellent memory for what he had learned the previous year and a desire to please adults. As his fifth-grade teacher would later comment: “Tim is my best auditory learner. He remembers nearly everything read to him down to the merest trivial details.” Reviewing old material came fairly easily to him. New material did not. So the first days and weeks went well. But as soon as teachers began introducing new material, his performance would fall off. Teachers often attributed this to a lack of effort on his part. By the time they figured out that he was doing the best he could (some never did figure this out), we were well into the fall, he was behind academically, his motivation was gone, his IEP was out-of-date, and he was pretty much lost for the year. Tim’s third-grade teacher just lost him sooner than most.
Three days after the math-copying assignment, Tim failed to bring home his homework folder. His IEP included a requirement that he be reminded to do this every day, and the teacher acknowledged that she hadn’t given him the reminder. She said she didn’t think she should have to remind a normal eight-year-old about this. That might be true, but Tim was not a normal eight-year-old.
I went to the principal and urged her to schedule the promised program-review meeting as soon as possible. The principal seemed a little put off by my insistence. She scheduled the meeting for two days later, on a date she knew I would be out of town. Linda attended, but I had to put my thoughts in writing. I expressed my concerns about the delays in developing and implementing Tim’s IEP.
The principal wrote back to me after the meeting, offering a brand-new interpretation of Tim’s IEP. She told me that the school’s position was that Tim’s goals and objectives were in place from the prior year but not the modifications and accommodations to which they had agreed at the same time. This meant no consumable textbooks, no homework modifications, no small-group reading, and no reminders about his assignments. It got worse. Tim’s third-grade teacher didn’t like the idea of Tim eating his snack and lunch at snack time, so she wanted that issue back on the table, too.
As upset as I was about what the principal’s reply would mean for Tim, I realized that it made the situation worse for her and the school, too. It suggested that she considered Tim’s IEP to be incomplete months after Tim was legally entitled to special education services. In other words, he was not yet receiving the individualized services he needed in order to succeed.
To appease me, the principal assured me that within a week Linda and I would receive a copy of a new set of instructional modifications that were being implemented in the classroom. The fact that the PPT hadn’t developed or agreed to these didn’t seem to bother her. She also promised to schedule another program-review meeting and to “look into” an assistive technology evaluation. Then she added that Tim appeared happy in school. He was not. Within a few weeks, Tim’s teacher, playground and cafeteria monitors, and principal were all complaining about his disagreeable behavior. I wasn’t surprised; his siblings were complaining about his behavior all the time, too.
I received the list of new “modifications” a week later. They were written on a plain white sheet of paper and appeared to be in draft form. It wasn’t clear who had written them or whether they had been approved by anyone. Contrary to what the principal had told me, it also wasn’t clear that they were being implemented in the classroom. The list included giving Tim fewer spelling words each week, fewer examples in English, and fewer examples in math. It also included allowing him to use a calculator for math and provided for him to use a homework folder, task sheet, and extra paper. One modification called for him to sit “in the mainstream of the class,” whatever that meant. On the other hand, consumable texts (which, I learned, the school had apparently forgotten to order), the lunch period modifications, and the teacher’s responsibility to check Tim’s homework folder, all of which were in his May IEP, had disappeared. So, too, had the requirement that Tim’s teacher have daily journal communication with us, his parents.
To give us a chance to respond, the principal scheduled another PPT meeting in October. As usual, it began with progress reports. Tim’s special education teacher, who according to Tim’s IEP spent fifteen minutes per day in the classroom with him, reported that “although Tim appears to be doing well he is still having some organizational difficulties.” His regular teacher’s contribution was in part to wonder why Tim was using a Trapper Keeper binder to keep his papers organized as opposed to a regular loose-leaf binder.
Then Linda asked for the school district to pay for the second appointment with the pediatric neurologist so she could observe Tim in school. The principal said that she did not have the authority to agree to this and that Linda should make the request directly to the district’s central office. Incredibly, the principal and teachers then announced that they were out of time and adjourned the meeting. As we left, the principal told us off the record that although the modifications and accommodations—which we didn’t get a chance to discuss at the meeting—were still officially only in draft form, she intended to implement them immediately.
Two weeks later, I learned that even this had not happened. Tim’s teacher graded him on a full set of spelling words the class received that week, not the “short list” in the school’s modification to Tim’s plan. Linda wrote to Tim’s teacher asking that she either adhere to the modifications as they were drafted or request that the PPT be reconvened to come up with new ones.
Meanwhile, the school district agreed to our request to have the pediatric neurologist observe Tim in the classroom. She observed that “Tim always appears to be a step behind the other children.”
While we were trying to use the pediatric neurologist’s evaluation to understand whether Tim’s behavioral difficulties were related to a potentially serious mental illness, I was surprised to learn that Tim’s teacher had thought it was important to ask the pediatric neurologist to weigh in on the lunch controversy. The principal reported to us that the neurologist “suggested that Tim bring two bags to school in the morning. One for snack and one for lunch. Tim is a vegetarian so does not eat many of the school lunches.” As if we did not know that Tim was a vegetarian—our whole family was!
But I began to understand why the teacher was focused on something as trivial as lunch. It was because the rules were much clearer at lunch than they were during the rest of the school day. Lunch period was brief and incorporated a single task. Presumably, anyone could master these rules there if he tried. And if Tim could not, then it wasn’t because of the rules; it was because of the changes we made to the rules. If only Tim would follow the rules, then all of his problems would disappear.
In mid-December, I also received a detention notice for Tim in the mail. I was surprised by this because neither the principal nor the teacher had said anything about it in all of our recent conversations. The notice informed me that Tim’s detention was because of an unspecified “third” conduct violation. I contacted both his teacher and the principal to figure out what this third violation was, as well as what numbers one and two were.
I learned that Tim was bothering other children in the cafeteria and that the disturbances had spilled over into the recess period after lunch. The cafeteria and playground monitors wrote up Tim’s conduct violations. His first had been for teasing a girl, but I couldn’t get the details of the second and third, other than that it appeared he had started to bully other children. Tim’s bullying behavior was a problem at home, too. Linda and I began to wonder if a formal behavior modification plan might need to be a part of Tim’s IEP.
Not that Tim had an IEP yet. We were halfway through third grade and the process was stalled. Applying various deadlines under the law, even allowing for adjustments for evaluations on top of other evaluations, it should have taken no more than three or four months at the most, not counting summer months, for a referral to special education to result in special education services. But every new evaluation could also trigger a new sixty-day clock for updating a program. But in our case, the initial program had not yet been implemented. So while our experience was theoretically unusual, it probably was not as uncommon as it felt.
In Tim’s case, the educational evaluations the school had commissioned in the spring were unused and outdated. The assistive technology consultation requested by the occupational therapist had not been ordered. Except for the “two bags for lunch” recommendation, the pediatric neurologist’s report was also already beginning to gather dust. It was thirteen months after Dr. R’s evaluation, and we still had no formal modifications in place. So we asked the school to hire an independent consultant, which was our right under the law, to help implement Tim’s IEP.
It was only after Tim’s attention, academic, and behavior problems took another turn for the worse that we even got a response to this request. In the first week of January, Tim’s teacher reported that Tim was not paying attention to her anymore. He “was sprawled on his desk” during class and “was fidgety during group.” She also expressed her concerns about Tim’s difficulty in reading. She said point-blank that she disagreed with the evaluations suggesting that Tim’s difficulties were related to a possible learning disability; she felt that Tim’s problem was rooted simply in inattention. We sat with her at a meeting completely on the defensive, despite the fact that we were two concerned and involved parents with a great deal of expertise in special education policy and services and armed with multiple expert evaluations. We left confused, having resolved nothing.
That month went poorly for Tim. One day his recorder didn’t come home with him, and he was unable to do his music homework. He had forgotten it in school and no one had noticed. Another day he came home without his coat, something that also might have been noticed as it was the middle of winter. He stopped bringing his homework home, although his teacher was still supposed to be checking for this each day before he left school. He got a low grade on a science test, the one subject in which he had been doing well.
Tim also became more aggressive with his siblings. He took toys from them and insisted that they do whatever he wanted to do. While eight-year-old Larissa pushed back, four-year-old Lizzie and three-year-old Ben either steered clear of Tim or did whatever he asked. To help him burn off some steam, we started Tim in a judo program at the local YMCA. He was very engaged at first and quickly advanced. But when he had to focus on technique and discipline, he began to tune out. The praise he had been receiving from his instructor became critique and then criticism, and after a few months Tim dropped out.
In late January, Tim really got his teacher’s attention. He was playing with a Game Boy in class, and she confiscated it. We were surprised to hear this, because Tim didn’t own a Game Boy. When we confronted him, he admitted that he had stolen it from another boy in school. We scolded him and told him that we expected him to tell the teacher so she could return it to the boy. A couple of days later, we found the Game Boy in Tim’s book bag. He admitted that he had taken it back from the teacher’s desk that day. He acknowledged that this was wrong but didn’t seem to care. The idea that Tim was stealing things from other children and the teacher was especially unnerving to me. I was worried that this and his newfound aggressiveness meant that his behavioral issues were getting lost in the arguments over his academic and organizational problems. And I still desperately wanted to know what was causing all of this, because I had no idea at the time and was tired of guessing.
The principal finally scheduled a meeting in early February, but just to discuss the pediatric neurologist’s evaluation and recommendations. It was too little, too late. The neurologist’s full report had been available to the school for almost two months. She had again found Tim to have learning disabilities, “severe problems with executive functions,” and a component of ADHD contributing to his distractibility. She wrote in her report to the school district: “Timothy is not intentionally poorly motivated. In any child with school difficulties, maintaining good self-esteem is essential. This should be accomplished by highlighting those skills that he excels at. Timothy’s strengths should be stressed to him (and to the rest of the class).”
This is where we were. It was over fourteen months since Dr. R had conducted her evaluation. Tim had an unimplemented IEP, from which all the original modifications and accommodations had been removed. He had a set of informal “modifications” that were sometimes followed and sometime not. In addition to his academic, organizational, and attention problems, he had developed new aggressive and antisocial behaviors. But help did not appear to be on the way.
We decided that it was time for a due process hearing.
Policy makers intended the special education process to be responsive to a child’s needs and a parent’s perspective. For those times when a parent believes it is not, he or she can request mediation—a less formal step—or a due process hearing (called an impartial hearing in the IDEA)—a formal administrative procedure to resolve conflicts between parents and school districts over special education programs and services. Parents can request a due process hearing, for example, if they believe that the district is not implementing their child’s IEP, not providing educational services in the least restrictive environment, or not providing the services—even clinical services—the parents believe are necessary to meet their child’s educational needs.
What constitutes an “adequate education,” the “least restrictive environment,” and an “appropriate” service, for example, is open to interpretation. So it is not surprising that parents and school districts sometimes end up in disputes.
A due process hearing is by its nature adversarial. A hearing officer listens to sworn testimony provided by both sides. Any documents either side brings to the hearing that are admitted are marked and labeled as exhibits. To protect everyone’s legal rights, lawyers are usually present. The process can be expensive and time-consuming, depending on the complexity of the case and the schedules of the hearing officer, parents, teachers, administrators, lawyers, and witnesses. The hearing officer issues a formal finding some time after the conclusion of the hearing, and it is binding on the parties. The parties then have to agree on how to implement the finding. Unless the hearing officer has been very specific, this agreement can be difficult to achieve, and even a “binding” agreement can fall apart.
I hate due process hearings and think they should be avoided if at all possible. One reason parents choose not to go to due process is that from the time they file their child’s program is basically frozen in place. This is called “stay put.” If, as the parents contend, the program isn’t working, then it continues not to work until the hearing process is concluded. So they are far better off exhausting all other remedies first.
Due process hearings can also be expensive. Parents are entitled to hire and pay for their own independent consultants and their own lawyer to challenge the district. If the parents lose, they can be out thousands of dollars in consultant and legal fees. If the parents win, then the district has to pay the parents’ legal and consultant fees as well as its own, plus whatever it costs to implement the new program and to provide compensatory educational services to make up for lost time. This makes due process hearings a high-stakes game for both sides—one that can interfere mightily with what should be from the start a cooperative and collaborative relationship between the parties.
We had three independent reasons for requesting a due process hearing when Tim was in the third grade. In our view, the school had failed to implement Tim’s IEP, failed to provide supports adequate to his diagnosis, and failed to engage an independent consultant to help the school develop his program. We believed our case was strong. Fortunately, so did the district’s lawyer; we were offered a settlement a week before the hearing. Without admitting that Tim’s IEP was inadequate, the district agreed to pay for auditory integration training, an independent educational consultant to monitor the implementation of Tim’s IEP, and an assistive technology consultation.
In essence, we had to request a hearing just to get the district to agree to do the evaluations we had been requesting for the past year. This still didn’t guarantee that we would get an appropriate program in place afterward. And we did not.
The hearing officer entered an order in support of our position on February 16, in plenty of time to get the three new pieces completed, and a new IEP written and implemented, by the end of the school year. The school hired an independent educational consultant almost immediately and she observed Tim twice in March, as his bullying behavior in school escalated. He was written up twice that month, once for bothering another student at story time and once for intentionally bumping into another student.
The pediatric neurologist started Tim on Ritalin on March 19. Linda and I had resisted this recommendation for some time, hoping that the auditory integration training would result in the same outcome. It hadn’t done any harm, but it hadn’t seemed to do much good, either. We eventually agreed to try the medication because school staff together felt it might improve Tim’s attention and performance, and we were trying to be cooperative in the aftermath of the hearing. It turned out that neither Tim’s teacher nor we could see any difference in his behavior, attention, or focus when he was on Ritalin. The reason, as we would discover later, was that ADHD wasn’t really his problem.
We emerged from yet another PPT meeting in March with a new set of goals for Tim that covered his full educational program: to improve language arts skills, reading skills, math skills, social skills, self-management skills, and self-esteem. These goals were heavily influenced by the independent consultant’s work. We adjourned without any objectives or modifications in place, deferring these to yet another meeting, scheduled for the first week in April.
The April meeting resulted in some very complex and detailed objectives that we felt were unworkable. For example, to assist Tim with organizational and social integration skills, he was to follow a structured, monitored, and assisted routine in the morning and afternoon to pack and unpack his book bag. He was to have appropriate behavior on the playground 60 percent of the time. He was to invite or be invited to a friend’s house. In the area of academics, he was to read two chapter books independently, spell five new words per week, participate in whole class decoding and spelling activities, and use a typing teaching program on the computer, among other things.
He had a new behavior modification plan that was equally complex. For example : “Tim will participate in a behavior modification program while on the playground. Recess will be divided into 2 parts. He will earn a good behavior coupon. If he has 1/2 good recess he can earn 1/2 a coupon or one coupon if the entire recess is good. The playground monitor will closely watch Tim, redirect him, give positive feedback, get him involved in structured activities as needed.”
That was only the beginning: “The criteria for having a good week on the playground will change as time goes on. To begin, if Tim earns a total of 2 full coupons, he will spend his 20 minute extra Friday recess doing an appropriate activity of Tim’s choice. Tim can invite 1 or 3 friends to join in his special time. Tim may save earned coupons to earn bonuses once he has reached the criteria for that week.” I was certain that the school would not be able to implement this behavior modification plan.
His instructional modifications and accommodations were no less complex. For example, the following eight steps modified his spelling lesson each week. First, Tim would use words from linguistic word family lists, not the usual lists other students were using. Second, the list would be coordinated by the school with a tutor we had engaged. Third, the list would be coordinated whenever possible with academic subject matter. Fourth, a pre-test would be given to determine the number of new words for Tim. Fifth, Tim would start with twenty words, ten of which would be simple, ten of which would be difficult. Sixth, there was a ceiling of no more than five misspelled words on the pretest. Seventh, both the pre-test and the post-test would be given to Tim orally, and the teacher would type on the computer as Tim spelled. A second column would be created on the computer to show corrections. Eighth, and last, attending to task would be monitored during the spelling test.
There were seven more sets of instructional modifications after this one!
The school seemed committed to carrying out all of these, but Linda and I wrote to the independent consultant a week later to tell her that they needed to be simplified. In fact, the playground plan fell apart the morning after it was adopted.
A small group of boys was playing football, and they invited Tim to join them. He went happily, a major step for a young man who had been having trouble making friends throughout the year. Tim lined up on defense, the ball was hiked, and the quarterback threw a pass to the receiver. Tim and another of his teammates tackled the receiver to the ground. Tackling wasn’t permitted, so the playground monitor called to the boys to stop. Whether or not they heard, the ball was hiked again and Tim tackled the quarterback a second time. The monitor told Tim he was writing him up because Tim had continued to play after being told to stop.
Tim realized instantly that, given the new playground plan, his first reward was pretty much up in smoke. With no incentive to be good, he continued to bother other children at lunch. A few days later, he was written up again for another playground incident, and two weeks after that he was written up a third time after being caught twisting another boy’s arm in gym class. He received another detention, and that was when he told me that he just wanted to be the “school bully.”
His behavior began to worsen in every setting. Even his Sunday School teacher reported that he was talking a lot and fooling around in class. She observed that “Tim likes to draw pictures of violence while the rest of the class is drawing more holy pictures.” I could only imagine what his pictures looked like. After evaluations from multiple consultants and clinicians over the past couple of years, I found myself with lots of strategies to try, but no closer to understanding what was wrong with Tim.
During the remainder of the school year, Tim’s IEP proved too complex for the school to implement, as we had known it would. In April, Tim’s assistive technology evaluation resulted in a recommendation that Tim be provided with a classroom computer and the training to use it. Because his keyboarding skills were weak, the consultant also recommended software that would minimize his use of the keyboard. The district agreed to provide a computer for Tim, but not until the start of fourth grade.
We and the school spent the rest of the school year documenting what was and was not happening and whether what was happening was consistent with the IEP. As we and the school went back and forth, Tim was lost in the shuffle. Sometimes he had his homework at night, sometimes he didn’t. Sometimes he played well with others in school, sometimes he didn’t. Sometimes he was attentive in class, but most times he wasn’t. I was frustrated, and my frustration reached a boiling point in late May, as we all shuffled along aimlessly toward the end of the school year. It was eighteen months after Dr. R’s evaluation, an educational lifetime. It had taken four years for Tim to get an IEP, even one that did not work, during which time his achievement levels had declined, his attention problems had worsened, and some serious behavioral concerns had emerged. But I was worried that I hadn’t seen the worst yet.
And so I was very pleased when I was informed at the end of the school year that we were being redistricted, and that Tim would be spending the next two years at a different elementary school. I looked forward to the summer’s rest (if not for Tim then for myself), and a new start.
But Tim and I both still had plenty of cause for concern. In May, Tim had met with the school psychologist for an evaluation. “Are you worried about the test?” she asked him. “I worry all the time,” he answered. So did I.
