Mainstreaming Students with Needs Leaves Some Parents Steaming
It was the end of September and inside a Washington-area public school, fourth-grader Kirby* was already having a meltdown.
Bright and articulate, he was in the principal’s office with his mother Christy Walker* who was about to discuss, yet again, Kirby’s “bad behavior.” But this time, after telling the gathered group “I’m not an evil person,” the 9-year-old started crying uncontrollably. Drooling, curled up, Kirby couldn’t stop.
Kirby was identified as a child with disabilities when he was 3 years old. He was diagnosed with attention deficit disorder, although his mother said the diagnosis didn’t fit her son’s problems. In kindergarten, Kirby was eligible for disability help at his public school and an Individualized Education Plan (IEP) was drawn up for him. A legal document, the IEP said he should get monthly therapy to improve his poor muscle control, although those treatments never materialized.
From kindergarten on, Kirby was put into standard classrooms with around 25 other children, although he did not do well. Even so, his IEP team, over Christy’s protest, eventually transferred him out of special education classes. He was reading above grade level, they told her, and could be placed in a regular classroom.
The special education law that covers public schools in the United States and mandates the IEP is called the Individuals With Disabilities Education Improvement Act, or IDEA. Passed in 1975 and last updated in 2004, IDEA says that children with disabilities should get the same education as anyone else, requiring that special-needs students be folded into the mainstream as much as possible, an effort called “inclusion.”
The inclusion trend has gained steam across the country and locally, including Montgomery County, Md., which in 2006 decided to phase out its self-contained secondary learning centers for special-needs students, immersing them into the general school population.
The shift has put a strain on already resource-strapped area schools. In some cases the move is working to the students’ benefit; in others it is not. Criticism comes from all sides, although educators and parents all want to do the right thing for the children involved. The problem is figuring out what the right environment is: a more intimate, specialized setting designed around special-needs children, or a more rigorous academic setting that breaks down the social divide between special-needs and regular students.
Kirby was being increasingly sent to the principal’s office during his rocky public school experience. His mother said he couldn’t master class routines and was labeled “defiant.” Lacking muscle control, his handwriting was bad but his teachers told Christy that he wasn’t trying hard enough to improve it. According to Christy, Kirby also developed obsessions, would say odd things, and didn’t follow directions. He was teased by other students, and “he wasn’t invited to the birthday parties.”
In third grade, Kirby got sent to the principal’s office for punishment 20 times, and he was suspended twice. When the new school year had barely begun, the 9-year-old told his mother he wanted to die. “Suicidal ideation,” Christy said, her tone flat. So she asked for a meeting with his principal.
“When we got home from it he curled up in my mother’s lap, still crying, and told her, ‘They’re tearing me apart piece by piece,’” Christy said. While her mother comforted Kirby, Christy phoned the special education advocate she had hired to help her deal with the school system. She also called Kirby’s psychiatrist. “He never set foot in that school again,” Christy said.
In contrast to Kirby’s journey, Julie Thomas*, a Washington-area professional in her late 30s with cerebral palsy, found her inclusion in a regular classroom to be a good experience. Julie uses crutches and has speech and handwriting issues.
“When I was in school in Kansas, these special ed laws were new. A lot of public school districts didn’t have experience with them,” she recalled. “But my parents believed I ought to be educated with everyone else. They insisted. My mother had to fight to get the school to teach me how to type in second grade, but I was put in classes with regular kids. I got a really good education.”
Julie — who graduated from college cum laude — said that when she later compared herself to friends whose disabilities had landed them in separate schools, “I noticed that they don’t have good jobs like mine. They’re either sitting home collecting benefits or they didn’t get the skills for higher-level positions. Their teachers had lower expectations for them and their classes weren’t as rigorous as mine.”
The downside of inclusion, she acknowledged, was isolation. “I didn’t get invited to birthday parties. But in high school I did a lot of volunteer work and was the equipment manager for the track and cross-country team.” Inclusion worked for her, but she emphasized that special education is supposed to fit each child’s needs and therefore shouldn’t be one size fits all.
Christy, like Julie’s parents, had to work hard to create a good education situation for her child. Despite Kirby’s difficulties with public education, his story also has a happy ending. With the help of Christy’s special education advocate, Michelle Davis — director of an advocacy consulting firm called ABCs for Life Success — Kirby was placed in a special school and the school system agreed to pay for it. He’s now at the highly regarded Kennedy Krieger Institute in Baltimore, Md., which accepts children from throughout the D.C. area.
“Michelle documented that the school was not in compliance with the law,” Christy said. “So Kirby is now flourishing at Kennedy Krieger in a class of high-functioning autistic kids. He loves school. He told me that nobody yells at him, and he hasn’t been sent to the principal’s office once.”
Private testing at Children’s National Medical Center had turned up what Michelle Davis and Kirby’s psychiatrist suspected, and another round of school evaluations soon confirmed: Kirby has Asperger’s syndrome. An autism spectrum disorder, Asperger’s causes difficulties in social functioning and understanding, along with clumsy movements, repetitive or eccentric behaviors, and obsessions with objects or topics.
“It jumped right out at me,” Michelle said. “How could this child have been ignored?”
“That’s not rare,” said school psychologist Elizabeth Rogers*, who pointed out that Asperger’s symptoms are not well known and children with mild cases often cope well until they get into the third or fourth grade. “Then school work gets more abstract. They get frustrated and start to lose it,” she said. Additionally, she noted that schools have an unacknowledged triage system in which they take the worst disability cases first and a child with good grades can often go unexamined.
“I’m the only psychologist for a school with 700 kids and I’m there one day a week,” she said. “I have three little guys with possible autism disorders. Last year [staff] said they were doing OK. They’re not doing OK. I’m determined to get to them for evaluations this year, but how? I’m overloaded.”
As a result of these types of problems, the parents of special-needs students are making their voices heard, and at times the sound is cacophonous.
“The level of [parent] dissatisfaction with special ed services provided by public schools has increased significantly over the last 10 to 15 years,” according to Pam and Peter Wright, attorneys, law professors and special education advocates in Virginia.
In 1993, Peter Wright won a landmark special education case before the Supreme Court. In the decision for Florence County School District IV v. Shannon Carter, the court ruled that public schools have to pay for private education for children with disabilities if the public effort isn’t working the way IDEA says it should.
So what’s still causing troubling situations such as Kirby’s? Three things, Peter Wright said. “First, dollars,” he pointed out. “It costs money to provide services.” Second, there’s simply a lack of highly trained special educators. Finally, he said, there are no minimum professional standards and no way to distinguish competence from malpractice in the field.
Even so, Pam Wright noted that special education conflicts are typically worked out before they turn into formal trials called due process hearings. The number of these hearings has decreased in Maryland and Virginia, where parents win about 10 percent of their cases against the schools, though in the District parents tend to win more often.
Throughout the area, parents also seem increasingly likely to hire a special education advocate to guide them through the complicated process. According to Davis of ABCs for Life Success, advocates can contribute expertise and information, mediate, suggest solutions, encourage a parent who’s discouraged and “act as a truth detector.” Costs vary, but can rise to the level of attorney fees. Some advocates do offer reduced or pro bono services, or take clients referred by nonprofits that pay for the advocacy work.
Most advocates say that when it comes to advice for parents engaging a school system about special needs, it’s critical to stay civil and remain calm.
“Never spill your guts, blame, or finger point,” said Peter Wright. “If you shoot from the hip you shoot yourself in the foot. Don’t tell school representatives they’re wrong. Tell them you’re confused and ask for an explanation.”
Similarly, Darrel Tillar Mason, a special education attorney and former vice president of Virginia’s State Board of Education, noted that you can’t divorce the school system — you have to work with it. You don’t want to become “a parent from hell,” said Mason, founder of the Center for Special Education Advocacy, a nonprofit set up to help parents and train attorneys to be their advocates.
All of the experts emphasize that parents and their advocates need to document everything in detail, be as practical as possible, and provide the information that schools actually want. For example, don’t simply say a child has a mental or physical challenge. Talk about the specific impact that the challenge has in the classroom and how it interferes with learning.
Also, don’t go into a meeting to develop an Individualized Education Plan and say you want what’s best for your child. That’s obvious. Rather, say that “10 hours of XYZ is the minimum amount of time my child needs to develop skills ABC,” advised Mason.
And remember, although it’s not likely that parents, educators, psychologists and politicians will all be on the same page when it comes to special needs, everyone is working toward the same goal: the best interests — and education — of the student.
*Names marked by an asterisk are pseudonyms for individuals who did not wish to be identified. Other details about the Walkers have been altered to protect privacy.
About the Author
Carolyn Cosmos is a contributing writer for The Washington Diplomat.