Devon Adelman's life as a student at Seattle's Nathan Hale High School is quite ordinary.
Like almost any other 17-year-old girl, Devon sometimes tries to avoid doing homework. She plays on an intramural basketball team, and she's a member of the cheerleading squad. With her long golden hair, ready smile and "happy-to-be here" attitude, it's easy to imagine Devon as a Nancy Drew-style adventuress busily unraveling neighborhood mysteries. In fact, she inspired such a character in a new mystery novel written by her father, Sean Adelman, "Sam's Top Secret Journal."
While Devon might seem like your average high school student, she's actually quite extraordinary. She was born with Down syndrome, a chromosomal abnormality that causes developmental delays, mild to severe mental retardation and a particular set of facial characteristics. Because of her different ways of learning, of acting — of being — she has endured more than her share of teasing, bullying and being left out.
Devon's joys and heartbreaks have made her parents strong advocates for inclusion of special education students in regular school classrooms, a flashpoint of controversy in schools around the nation. On one side of the debate are people like Devon's parents, Sean and Susan Adelman, who believe children with disabilities benefit from attending school with everyone else — and that their classmates learn important lessons about empathy and acceptance.
A differing viewpoint is held by some education watchdogs, who say the ever-increasing number of special education students in regular classrooms is overwhelming teachers and slowing down the pace of learning for other children. A growing number of parents whose children have disabilities are speaking out against inclusion as a one-size-fits-all solution. Both groups say that the push to place children with disabilities in regular classrooms denies them specialized services they need, and claim that inclusion is about saving money, not about serving kids.
One of those voices belongs to Melinda Clayton, a nationally certified disability analyst and licensed psychotherapist in Colorado and Florida.
"The underlying philosophy [of inclusion] is a good one," Clayton said. "We want all members of society to be fully accepted and valued, and to have access to the resources they need in order to live up to their fullest potential. Unfortunately, what sometimes happens, as happened with downsizing mental health institutions in the '80s, is that we don’t have adequate supports in place in order to make the transition a successful one."
The federal Individuals with Disabilities Education Act, or IDEA, of 1990 requires public schools to provide services for special education students in the "least restrictive environment conducive to learning." The law requires that children with disabilities be educated with children who are not disabled to the extent that is "appropriate," a word that leaves much open to interpretation. One result has been a rush to include — or mainstream — as many special education students as possible in regular classrooms.
However, schools sometimes fail to provide the needed supports children with disabilities need to succeed, Clayton said, and that sets them up for failure. Children with developmental disabilities often need a full-time aide beside them in regular classrooms if inclusion is to be successful, as well as opportunities for speech therapy, tutoring and other special needs. And, experts say, the type of inclusion must be suited to the child's individual needs. It doesn't always happen that way.
Clayton remembers a case in point from her own experience as a therapist. She worked with a teen-aged boy with autism who attended regular classes at his high school. The student was extremely bright, but had a hard time containing his volatile emotions and acting appropriately in loud and crowded settings. But Clayton's recommendation that the school not require him to attend large, noisy activities was overridden by well-meaning administrators.
"They worried that singling him out in that way might be harmful to him socially," she said. "Ultimately, the child attended a very chaotic school assembly without additional supports and reacted aggressively, resulting in criminal charges."
Clayton said that for some children, full-time placement in a special education classroom with specifically trained staff, adaptive equipment and specialized learning materials might best meet the needs of the child. For other children, bringing speech or occupational therapy into a general education classroom might be more appropriate.
Policies and costs
There are roughly 7 million special education students in U.S. public schools, and their disabilities range from dyslexia and mild speech disorders to blindness, deafness, profound mental retardation, severe health problems and combinations of all of these. Special education — which requires trained teachers, special equipment, speech pathologists, physical therapists and psychologists — is financed through a bewildering combination of federal, state and local funds that varies widely from state to state and district to district.
According to the U.S. Department of Education, the average cost of educating a special education student is a little more than double the average cost for other students. A wide spectrum of expenses make up that per-pupil cost for special education, though. The majority of special education students receive minimal services, such as extra therapy for speech problems or accommodations to help with learning disabilities like dyslexia. Fewer than 20 percent of special education students have profound disabilities, but some of those students have an array of expensive needs. Their education costs can skyrocket to many times the cost of educating a typically-developing child.
All told, special education in the United States costs about $30 billion to $35 billion per year. Due to funding inequities in U.S. schools, access to those funds is uneven, and students with disabilities who attend school in low-income districts are unlikely to receive the same level of care as their more privileged peers.
"The challenges are great in serving kids in high-poverty schools, in all areas," said Melody Musgrove, director of special education programs for the U.S. Department of Education. "Special education is no exception. High-poverty schools are certainly a concern."
The federal requirement to educate special education students with their peers to the degree that is appropriate is applied unevenly, too.
"The statute is the same everywhere," said Musgrove. "It requires that children be educated in the least restrictive environment. But different states apply that standard of inclusion very differently."
For instance, a study released last August showed that the New York City Department of Education is making good progress toward reforms that will reverse its longstanding practice of segregating special education students in their own classrooms and schools.
Musgrove said that for most special education students, being educated with friends whose development is more typical is important for reasons that reach beyond social needs. When children who can achieve — like Devon — are segregated in situations where learning happens at a slow pace, their progress is held back. Many states have made it a priority to increase numbers of special education students in regular classrooms, and to improve outcomes on standardized tests, and that's important, Musgrove said.
Devon's family had to push for her chance to be the happy, popular student she is. Sean Adelman, an orthopedic surgeon, was planning to move to Florida for a job when Devon was old enough to attend kindergarten, but he changed his mind about the move because in Florida Devon would be bused to a specialized school where most students had profound disabilities.
"That's not to say that those children don't have their own special needs and circumstances, but it was not good for her at all," Sean Adelman said.
In Seattle, where the family later settled, Sean Adelman "had to raise a huge ruckus" to get what he thought was best for his daughter: the chance to attend school classes with the kids in her neighborhood instead of being segregated all day in special education classrooms. He doesn't regret advocating for his daughter's legal rights, and believes Dev's classmates learn as much from her as he has.
"People think of inclusion as a one-way street," he said. "The reality is, everybody gains. The honest truth is that I'm a better person for having had Devon in my life. That makes me appreciate things I never understood. She fights for things I never had to fight for, and no matter how bad a day she's had, she always has a smile."
In elementary school, Devon was sometimes taunted because the effects of Down syndrome made her speech patterns hard to understand. She endured the familiar ritual of being chosen last for sports teams, and of hearing kids talk rudely about not wanting her on their team. More recently, the hurts have been about being left out, such as when her basketball teammates planned a sleepover and didn't invite her. Happily, kinder friends asked her to spend the evening with them.
"That's why inclusion is so important," Adelman said. "We all grow and learn from each other. The challenge is to make sure inclusion is not just about a token special kid, but that kids are co-educated."
Among children with serious developmental disorders, Devon's learning potential is quite high. It took her a long time to learn skills like riding a bicycle, and even skiing, but she persisted and won out. The same determination helped her learn to read. Like many children with Down syndrome, she is friendly and sociable. Her growing mental capacity has allowed her to understand that she is different, though.
"To this day, people see her and perceive there are problems," her dad said. "She's old enough that she knows that. It's hard to watch your kid go through that."
When Devon attends regular classes, it is usually with an aide by her side. She takes some of her classes in a separate special education classroom at her school. Her parents have seen benefits, and made peace with that. They've worked willingly with teachers to ensure Devon gets as much as she can from her school experience.
"She's so cute she could get away with murder," Sean Adelman said. "Unless we are really checking on what she's doing, she's not always being challenged. We check to see that she does have homework, and that she's doing it."
For parents of children with profound disabilities, the inclusion debate looks quite different. Salt Lake City mother Jenifer Lloyd's opinions about what's best for her daughter, Maura, have changed over the years. Shortly after her birth, Maura had a devastating stroke that left her with significant brain damage. Now 17, Maura can't talk, can't walk unaided, and her vision and hearing are severely impaired. Still, she is a "very social, and generally a pretty happy child," her mother said.
When Maura was young, her mother favored inclusion. As she grew older, though, it became obvious that Maura had less and less in common with her schoolmates — and that she needed specialized services that regular schools couldn't provide. Lloyd is grateful that inclusion at a regular school wasn't her daughter's only choice.
Maura attended preschool in a regular classroom, and she loved it. "A couple of little girls really made an effort to befriend her," Lloyd said. "They learned that she wasn't scary. She might make a strange noise, or do something different from time to time, but they realized there was nothing to be afraid of, even at that young age."
During her elementary school years, Maura was schooled in a special education classroom within a regular school. There, she had brief, but daily, contact with typical kids.
"Maura used to go to her mainstream classes, and other children would read to her — and she thoroughly enjoyed that," said Lloyd.
Because of the profound nature of her disabilities, Maura attended elementary school on a shortened schedule, and wouldn't have benefited much from trying to learn multiplication and division, Lloyd said.
"That would be an awkward sort of inclusion. But the reading, assemblies, a music class — she could participate in that."
Lloyd was impressed by the kindness and compassion of most of the children, and said Maura found it very stimulating to be with them. But, when it was time for junior high school, Maura's growing needs trumped her mother's wishes for her to be like — or at least with — ordinary kids in an ordinary junior high school.
Because they live in a populous urban area in Utah, the Lloyds had the option of sending Maura to a specialized school. With some hesitation, they chose to place her at Canyons School District's Jordan Valley School, a school for children with profound disabilities.
There, she receives physical therapy, swims in a pool that eases her taut muscles, and practices using her walker — "a big, fancy contraption," in her mother's words — in the school's wide, quiet hallways. That is Maura's schoolwork. It's hard work, fitted to her particular needs. She is among other students facing challenges as daunting as her own, and she is thriving, her mother said.
Serving all kids
The situation that best fit Maura's needs involved removing her from the busy, complicated environment of typical public school classrooms. At times, however, the drive to do what is best for students with disabilities affects public school experiences for other students. Increased mainstreaming of children with severe disorders has left teachers in some areas overwhelmed by the need to deal with children who scream endlessly, or are physically combative, unresponsive or in need of constant care. Meanwhile, pressure on teachers to prepare all of their students for success on standardized tests continues unabated.
And, needs of special education students are only one of many challenges teacher face. Some of today's classrooms contain a veritable case load of students with minimal English skills, profound autism, severe behavioral problems or learning problems traceable to poverty — along with students who face none of those challenges. Teaching veteran Lenore Waggoner, whose long teaching career included 25 years in Virginia's Fairfax County School District, said that in such cases, large class sizes are the final straw that defeats teachers, no matter how excellent their skills.
"Class size makes a difference," Waggoner said. "You wouldn't put 30 kids in an environment like that. It's not only overwhelming to the teacher, but to the students themselves."
A statement by the National Autism Center said that while many children have benefited from it, "inclusion has not fully met its promise."
"Public schools are sometimes unable to provide the specialized education required for children with autism, especially those with the most severe language and behavior disorders," the statement said. "It is unrealistic to expect that regular education teachers will always have the specific training required for this population."
Even in areas where the inclusion philosophy is deeply ingrained, it isn't always practical.
"Although schools may have a mandate to include all children, it is not uncommon that some eventually re-create special classrooms because the children did not receive the appropriate education or their behavior problems could not be addressed within the regular classroom," according to the National Autism Center.
Child by child
If there is one point on which there is agreement regarding inclusion, it is that each special education student has unique requirements that require individualized solutions. Federal special education law allows for that, and provides a path forward, Musgrove said.
"The decisions are to be made on a child-by-child basis. We believe that needs can be met, for the most part, in general education classrooms. There are reasons for children to be removed for a specific period of time because of special challenges, but not necessarily all day," she said.
"I recognize that teachers are under a great deal of pressure, because we expect a lot of them," Musgrove continued. "There must be a framework in place to ensure teachers get the support they need, and that must be tailored to the needs of the students. We expect a lot of teachers, and all in all, they are doing a magnificent job."
Copyright 2016, Deseret News Publishing Company