Islands in the Mainstream
In a conference room buried deep amid the sprawling halls and cubicles of Ely High School in Pompano Beach, a recent discussion of the proper role of education in a child's life is beginning to fray around the edges. Spurred perhaps by the continual blatting of the fax machine in the corner or the absence of air conditioning in the sweltering room, tempers are beginning to rise. "This is no joke," warns Nicol Shulman, whose seventeen-year-old daughter Rachel is a senior at Ely. "I am really upset about it."
Shulman's complaint is a rare one. Her daughter, she says, has no friends among her classmates. "Rachel's been in this school for two-and-a-half years, and she doesn't have anyone she goes to lunch with!"
At this a previously silent teacher sitting in a corner of the room pipes up in disbelief. She's had Rachel in one of her classes for months, she says, "and let me tell you, Rachel socializes quite a bit...." Before the teacher can finish her thought, however, she's interrupted by a mother whose blood is up. "She doesn't know a soul! She doesn't know one person's name! Come on, lady!"
Still the teacher persists. "I'm saying that in my classroom she socializes. They sit at a table together, they work together, and she's talking among her peers -- now, what she does at lunchtime...."
For the second time, she fails to complete her sentence. Nicol Shulman has heard this line before, and her immediate response is to unleash a torrent of frustration: "She walks to lunch on her own and sits by herself on her own! Listen to me: A relationship in a high school means that somebody calls somebody. If this doesn't happen, she's not socializing! It's all just 'Hi Rachel! Hi Rachel!' but it doesn't go any further!"
As the bitter words swirl through the room, Rachel fidgets nervously in her seat at the long conference table. She squirms and twists. She peeks into her backpack. She pulls a hair tie from her wrist and tugs her mop of frizzy rust-brown hair back into a short ponytail.
Finally, reluctantly, Rachel thrusts herself into the argument. Leaning toward her mother, she whispers, "I do have friends, Mom." But when asked by her mother to name one classmate, the heavy-set girl in the Florida State sweatshirt cannot do it. "I know some of them," she says softly.
New ideas often hold hidden surprises when they're finally put into practice. The new idea called inclusion is no exception. Inclusion is the belief that children with disabilities are better off integrated into the regular student population than segregated into their own educational worlds. As inclusion (it is also called mainstreaming) has gained ground over the last three years, it has put more and more students like Rachel into regular classrooms.
And here in Broward County, it's also causing some school officials to wonder whether angry, strong-willed parents such as Nicol Shulman are running the system into the ground by demanding more than the schools can possibly provide.
Rachel seems a perfect candidate for inclusion. Although she has Down syndrome, a genetic disorder that has rendered her mildly retarded and left her with a speech impediment, she can read, write, add, and subtract, and she has never been disruptive. But she has a problem grasping abstracts, and her trouble with locution makes it difficult for those who don't know her well to understand what she's saying. She finds the social dance of making teenage friends stressful and difficult.
So in the sense of her class schedule, Rachel Shulman is squarely in the mainstream, but in other ways, she's very much still an outsider. Her parents blame the school. They say officials at Ely are not interested in helping Rachel ease into new situations, make friends, fit in, and feel comfortable.
That's why they've come to Ely on this Tuesday afternoon in mid-December, to sit down with Rachel's teachers and come up with a plan that will help her develop the social skills she'll need in the real world that awaits her after high school.
But the meeting has quickly degenerated into a miasma of mutual accusations and ill will. School officials are not enthused by Nicol Shulman's suggestion that the school help her daughter learn social skills by assigning a student or a group of students to sit and talk with her during lunch. Actually, the school tried this once, last year. A month into the scheme, when the school asked Rachel's assigned lunchmates for a report, they "stated she was not very social, but still sitting with them," according to a school document provided by the Shulmans.
As Grace MacDonald, an official with Broward County Public Schools, explains to the Shulmans in a sprightly tone, "If no one wants to have lunch with you because they'd rather have lunch with somebody else, then you're out of luck for lunch."
Inclusion holds that children with mental or emotional disabilities -- just like so-called normal children -- develop and learn best when placed in regular classrooms alongside a random assortment of other kids. Over the past five years, inclusion has been embraced by more and more school districts around the country. And, in fact, the concept is no longer merely a growing trend; it's the law. This past summer Congress passed a reauthorization of the Individuals With Disabilities Education Act of 1988, one of the landmarks on the road to greater inclusion. For the first time, the reauthorized bill specifically provides that every child has the right to "a free and appropriate public education" in the "least restrictive" environment possible.
For Rachel and thousands of other children in the county, this has meant a straight schedule of regular coursework, with no special-education classes added. That's quite a change from what she could have expected as little as five years ago, when many learning-disabled students were relegated to separate classrooms, a practice scorned by parent activists as "warehousing."
Rachel Shulman will never be warehoused -- not if her parents have any say in the matter. And by law they do. The way the law is written and interpreted by courts and regulatory agencies, parents are in the driver's seat. A 1993 federal court ruling placed the burden on schools to justify their placement when it involves putting a disabled child in a more-restrictive setting than the child's parents desire. So unless a child is violent or disruptive, a school cannot easily force his or her transfer out of the regular classroom over a parent's objections. It must first convince a judge that the parent is wrong.
On a recent school night, Rachel Shulman is scuttling about her bedroom in her parents' house in Pompano Beach and talking nonstop about her two favorite subjects, sports and music. Her favorite teams are the Chicago Bulls and the Dallas Cowboys. Her favorite singing group is the soul trio Immature.
She expounds on the history of the group, about each member's personality, about how good-looking each one is. She punctuates her commentary with examples of lyrics pulled from CD liner notes and quotations from magazine articles.
Judging by the condition of her bedroom, Rachel is, unlike many teens her age, exceptionally organized. Thought has been given to the layout of her possessions, and each has its proper resting place. Her CDs are alphabetized and carefully stored in an upright rack. Her favorite teen magazines sit perfectly squared, as if on display, on the top of a small white desk in one corner. A line of trophies (one of them for being "Student of the Year" at Pompano Beach Middle School in 1995) stand proudly on a table.
In this room one sees Rachel in her element. Here in her own place, one where she feels entirely comfortable and responsive, her natural shyness falls away gradually like autumn leaves. Here her sweet personality and her other-regarding nature shine through without reserve or inhibition.
She feels sorry for her current heartthrob-from-afar, the lead singer of Immature, because his mother is dead. Sometimes when she listens to him sing her favorite song, "All Alone," she cries.
This is a side of Rachel that few outside her family get to know. At home she is comfortable and not deluged by stress and so better able to communicate. Like many people with Down syndrome, she has problems enunciating her words clearly and she gets easily frustrated by the blank looks that so often greet the labored expression of her thoughts.
This is part of the reason her parents feel so strongly about her being included in regular classroom settings. So far, they have not been happy with their experience at Ely. "What they don't do -- unless you push them -- is substantively modify a curriculum to meet her needs," says Rachel's father, Frank Shulman. There's a difference, he maintains, between doing that and just throwing a student like Rachel into a regular sink-or-swim classroom and then dealing with the situation by giving her a break on her grades.
Just this past semester, Rachel took an introductory course in journalism. She didn't like it because she didn't understand a lot of what was going on and so ended up flunking the course. When Shulman called to discuss the class and the grade, the school changed Rachel's grade from an F to a C.
"Now what's the use of that?" her father wonders. "They could have taught her something about headlines, or she would have loved to learn about sports coverage. Instead, they just let her sit off by the side the whole semester while everything went on over her head, then to make up for it, they fudged her grade. That's what they call modifying a course."
For two years the Shulmans have been waging a running battle with school officials, first, to convince them to let Rachel into regular courses and, second, to modify those courses so that Rachel could get something useful out of them. This is how inclusion is supposed to work, in their strongly held opinion.
It is a battle that the Shulmans have fought through a multitude of letters, faxes, meetings, and mediators, a fight that has taken up the lion's share of the couple's time over the past two years.
This battle was touched off within days of Rachel first setting foot in the building, when the Shulmans sent a letter to the Ely principal, Dr. Earlean Smiley, introducing Rachel to the administrator and setting out their goals for the year. "Who is Rachel?" the letter asked. "Rachel is a beautiful fifteen-year-old child with Down syndrome.... She is kind, consistent, fairly organized, and she wants to learn with a passion."
In the letter the Shulmans explained their decision that Rachel would continue the "inclusive education program" that she had been involved with at her previous school. They also listed other goals for Rachel: that she "work for a regular diploma on a six-year basis," that she get "a modified delivery system as well as a modified evaluation scheme and class goals," a "sensitivity program for the regular classroom teachers who will be teaching Rachel," and, possibly, participation on "the cheerleading pep squad."
When Smiley didn't respond, the Shulmans felt blown off, they say. (For her part Smiley refuses to answer questions concerning individual students at her school. And while she allows a reporter to interview staff members, she refuses to allow access to any of Rachel's classes.)
The Shulmans' discomfort intensified when the school failed to follow through on a promise to implement a program called Circle of Friends, in which a group of students -- some disabled, some not -- meet after school and go on outings together.
By the end of 1995, the tone of the relationship between the Shulmans and Ely officials had deteriorated, as shown by the Shulmans' second letter to Smiley, which was copied and sent to an attorney. "We again insist that the school take an active role in facilitating Rachel's entry into any and all of the school's activities, including lunch, clubs, teams, transportation, field trips, etc. This is the law, and I insist on it being followed."
In early 1996 the Shulmans took their case to mediation, a process in which a school official from outside the district meets with both sides to attempt to bring them together and create a common educational plan. According to the agreement, the school would take on the responsibility to help Rachel find a lunchmate and to help ease her into extracurricular activities.
But the problems only continued. The journalism grade was one sore spot. According to a service matrix developed by the school to keep track of its efforts on Rachel's behalf, "She did not like the class, she did not understand. She stated that she was receiving help from the teacher and from her buddies, however, she did not want to be there."
Now the Shulmans are trying to find an appropriate source of vocational study for Rachel to work with. Their goal, they maintain, is simply to ensure that Rachel receives what they consider a normal high-school experience and a meaningful education.
The Shulmans' fight may be a sign of things to come in Broward County schools, where a growing cadre of parents is forming to advocate for the least restrictive environments possible for their disabled children. These parents rely on an extensive body of detailed regulations and case law that has built up over the years to define the rights of parents who challenge schools' placements of their children.
When Elaine Bedard first inquired about the possibility of having the school system pay for a closed-circuit television system for her daughter Ann Marie, a fourth-grader at Cypress Creek Elementary School, the district balked. The system, which costs about $5000, magnifies the letters in books or papers so that Ann Marie, who is nearly blind, can better learn to read and write. If she doesn't have one in her home, her mother argued, she won't be able to do homework.
So Bedard went straight to the IDEA Law Reporter, a weighty compendium of advanced regulations concerning the placement of disabled children. On page 627 she found the tool she was looking for.
"It said right there that the school had to pay for it," she recalls indignantly. "So I called over [to the school district] and asked them, 'Don't you have this in your office? Well, find it. It says I'm right.'" Today a pair of beanbag salamanders lie in languid complacency on top of a state-of-the-art, closed-circuit television system on a desk in Ann Marie's bedroom.
When Carol DiMauro's son, Andrew, who is seven years old and autistic, first entered the school system, "I let them handle everything, because they were the experts. I let them do what they wanted." Now she looks back and sees that as a mistake. Her son didn't become verbal until last year, and she thinks part of the reason was that he didn't receive any intensive, specialized, and individualized speech therapy in his first years in school. The school experts said it wasn't necessary because he was already attending a school whose whole program was based on language and speech therapy.
Other parents have had similar experiences, says Wendy Bellack, coordinator of the Family Network on Disabilities of Broward County. There are "so many things going on that I would not allow if it were my child's classroom." But because many parents of disabled children are so burdened with work and with the thousands of time-consuming chores that accompany a child with special needs, "They can't really see exactly what's going on." Bellack sees her job as rectifying their ignorance and helping them to make changes.
Bellack believes some school officials get a little skittish around activist parents. Last year, in a speech she gave to a conference of the Florida Federation of the Council for Exceptional Children, she threw two questions at the sea of special-ed teachers in the audience. First, she wanted to know, how many of them had ever referred a parent to her organization? A couple of hands went up here and there -- but only a couple.
Second, she asked, how many of them were afraid that if they ever did make such a reference, they would quickly turn into the parent from hell? All the hands shot up, and the laughter began.
Frank Shulman's not laughing. Last year he was elected as a parent's representative to the advisory committee of the school board's Exceptional Student Education (ESE) program, which oversees the education of all disabled and gifted children in the county. It's a role he relishes, a role that seems well suited for his mixture of energy, bullheadedness, self-righteousness, and willingness to be outright, in-your-face rude.
"A lot of people don't like Frank, because he can be so obnoxious," says Bedard, who serves with him on the ESE advisory committee. "But I kind of like him."
Shulman's style is revealed during a recent meeting at Ely. Just before the meeting started, Shulman stepped into a corner and leaned down into the face of a man who was sitting there unobtrusively waiting for things to get underway. "Excuse me, who are you? Why are you here?" he demanded to know. His tone wasn't harsh, but it wasn't kind either. The man looked up and replied in a wounded, slightly put-upon tone, "Because you asked me to come." It turned out he was from Broward Community College, and he was there to talk about BCC programs that might benefit Rachel.
Indeed, new acquaintances sometimes take Shulman for a lawyer, an impression he does nothing to dispel. On the contrary he runs a massage-therapy business with Nicol, the latest in a string of small-business ventures that began with a private elementary school in New Jersey. This was in the late Sixties, and in the spirit of flower power and Haight-Ashbury hippiedom, he called it "Children of the Rainbow." His three oldest daughters, now in their thirties, spent their entire primary-school years there.
The Children of the Rainbow school had a simple philosophy: Learn by doing. "Rather than teaching kids about civics, we'd take them down to the courthouse," he says. When his oldest daughters graduated, he got out of the school business, but the experience left him with a more sophisticated understanding of educational lingo than most other parents in his situation may have.
Consequently, more and more of these parents are turning to him for advice on everything from how to get their kids into better programs to how to deal with an unresponsive ESE specialist. Shulman is eager to help them, because they "don't know that they're being seriously cheated. I say you've got to fight them. Threaten the principal. The principal won't listen to you? Talk to the principal's boss. Find the political pressure points and push. They'll give in if you push -- piece by piece by piece."
All of this is not necessarily good news for an overcrowded and underfunded school system or, in particular, for the special-ed teachers -- now called ESE facilitators -- at Ely High School. In their opinion, parents like the Shulmans are nothing more than vocal troublemakers.
There are 2500 students at Ely; 244 of them have disabilities severe enough to put them in the ESE program. On a wider scale, Broward County public schools contain 24,283 ESE students (not counting gifted students), about 10 percent of the total student population.
And just as with the other students, "There is a whole spectrum of parents," says Lauren Ouellette, an Ely ESE facilitator whose specialty is teaching disabled kids about science. "On the one hand, you've got the Shulmans, who border on the ridiculous, and on the other hand, you get parents who don't give a shit at all." Neither type makes teachers' jobs any easier, she says.
But at least parents who don't care are shortchanging only their own children; activist parents like the Shulmans shortchange everybody's kids, says Dr. Christine Hall, who runs the ESE program at Ely. Unlike parents Hall looks at the issue of special education from a plural viewpoint. Her concern is not and cannot be for a single disabled child but for all disabled children. She doesn't have the luxury of focusing on each tree in the forest; she's got the woods to mind.
When asked what would happen if every parent were to demand the special treatment and stroking the Shulmans require for Rachel, Hall cringes. "It would be a scary thought. The amount of time I spend on Rachel Shulman is inordinate. I spend more time with Rachel than with all the other of my ESE students combined."
To prepare for her recent meeting with the Shulmans, for example, Hall spent "four entire days working with my doors closed." In fact, she says, that meeting illustrates the damage that activist parents like the Shulmans do by forcing schools to rechannel scarce resources from other kids to their own children. Knowing how zealous the Shulmans are in making sure that every detail of Rachel's education is spelled out in writing, Hall made sure to invite every teacher who might potentially have Rachel in an upcoming class.
"Those teachers spent all afternoon at the meeting, and every one had to get a sub for their classes," she says. "So none of the kids in any of those classes got anything done all afternoon."
The disabilities covered by the ESE program range from relatively minor learning disabilities and physical impairments such as hearing loss to severe emotional and mental conditions such as Tourette's syndrome. Each one of the kids who suffers from these ailments has the right to the least restrictive environment possible. For most this means full inclusion leading to a regular diploma, Hall says. These students attend regular classes but receive assistance from an ESE facilitator.
Other students who need more assistance attend a mixture of special-ed programs and regular classes. Rachel Shulman is one of only a handful of students at Ely -- fewer than ten, according to Hall -- who attend only regular courses but will receive special diplomas because their disabilities are considered too severe for them to learn the material necessary for a regular diploma.
Hall has been working with disabled students since 1986, and, she personally believes that some parents ask too much of their children. "A lot of parents who refuse [special-ed] services are in denial," she says. "Or they don't want the stigmatization. A lot of parents have this attitude that 'My child is not going to go for a special diploma. My child is going to be a doctor.'"
Rachel Shulman doesn't know what she wants to be when she grows up. However, she does have some idea of the sort of life she wants to live. She wants to travel, she wants to go to college -- preferably Florida State University, her favorite school -- and she wants to live on her own, away from her parents.
Bit by bit over these last few years of high school, she's been getting ready to abandon the cocoon of childhood. High school can help by teaching her independent-living skills: riding a bus, dealing with problem-solving skills, reading the newspaper, using the phone book, deciphering weather maps, and so on.
This coming semester she will enroll in a new course called Academy for Success, which focuses on teaching students the basic skills employers look for and then letting the students practice those skills in actual internships. It's a course that was designed for non-ESE students, but the teacher, Mr. Patz, has promised to work with the Shulmans to modify it for Rachel.
Nevertheless he admits to a little ambivalence. "I'm not so sure what this means. If it means that's the only thing that I do for the next twelve months, then that's not -- then the program would have to shut down."
Frank and Nicol Shulman say they don't want any program shut down on Rachel's account. But this they promise: One way or another, the school will provide their child with the education she needs. If not lunchmates to boot.
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