I’m really hoping Charissa Stone will turn out to be crazy.
It’s been a week now since Stone sent me an email out of the blue, suggesting I write about her eight-year-old daughter, Erin, and how the Council Rock School District has refused to acknowledge that her needs aren’t being met by the regular curriculum in her classroom. Erin, Stone wrote, has a learning disability that qualifies her for special education. Council Rock ought to recognize this, she said, because while Erin’s IQ is above the district’s 130-point “gifted” designation, her academic performance is only average.
Stone accused Council Rock of stonewalling: The “tactics, shadiness and lengths that schools are willing to go to get out of providing services for kids is unbelievable, almost criminal,” she wrote, her rage radiating from my computer screen. She’s in a court battle with the district, even though she’s president of her daughter’s school’s PTO: “While I am busy spending countless hours arranging bake sales, teacher appreciation dinners and numerous fund-raisers, my second-grade daughter can barely read or spell a word.”
If Charissa Stone is crazy, I won’t have to open the Pandora’s box that is special education in Pennsylvania—a topic one teacher describes as “fraught with so much heartache.” I won’t have to look at how, thanks to ever-growing numbers of kids with ADHD and autism and other disabilities, special ed is devouring bigger and bigger slices of the school-district funding pie—prompting furious resentment in parents of regular old kids deprived of kindergarten and music and art. I won’t have to listen to special-ed advocates argue that these kids have historically been overlooked and underserved, tied to their seats, bullied and teased and, worst of all, ignored.
But most of all, I won’t have to decide whether Charissa Stone is the mother of a child whose disabilities really do qualify her for the extra attention of special ed, or just the epitome of the modern-day suburban Philadelphia Tiger Mom: overanxious, over-involved, and infuriated that the school district considers her daughter … average.
SHE DOESN’T LOOK CRAZY. In fact, as we sit and sip coffees at the Starbucks in tony Newtown, Bucks County, in July, Charissa Stone looks just like all the other suburban ladies around us. She’s wearing khaki shorts and a black V-neck shirt; her dark hair is long and straight. Her face is makeup-free; there’s nothing odd or flamboyant about her, unless you count the berry-pink Organizher folder crammed with papers and files. “I look more organized than I am,” she laughs. “I’m not a pro at this.”
Stone is 41. She grew up with an older brother and a single mom who worked as a secretary; their small household hopscotched from Northeast Philly to the West Coast and back again. She studied science and marketing at Drexel, and at age 20 met her husband, Chris, who’s 44, at a New Year’s Eve party. She became a pharmaceutical sales rep; he’s a Wharton grad and an engineering exec with Comcast. They have three children—Amanda, 11, Erin, eight, and Ian, four—and a rambunctious puppy. Charissa’s been a stay-at-home mom since Amanda’s birth.
Erin’s troubles began in kindergarten, where her teacher found her shy and reserved. At home, in contrast, “She was always arguing and crying,” Charissa says, “running up to her room, talking back: ‘I won’t do it! You can’t make me!’ I wondered—how could a little kid harbor that much anger?” In first grade, though, in Council Rock’s standard cognitive-abilities testing, Erin scored in the 97th percentile, with an IQ of 125. She was identified as possibly gifted and referred to the school psychologist for evaluation.
The psychologist turned Erin down for the gifted program, though she did write a glowing report. “It said she was so bright and artistic,” Charissa says, scrambling for it among her papers. “But her academics were really bad.” A generation or two ago, a mom like Charissa would have shrugged and figured her kid wasn’t academically inclined. Instead, like any good modern mom, she hit the Internet, searching for information on kids with high IQs and low academic performance. And she happened on a diagnosis known as “dual exceptionality”—kids who are gifted but also have learning disabilities. “It seemed to fit Erin to a tee.”
Charissa mentions, frequently, her fear that her daughter won’t live up to her potential. It’s such a natural concern for a parent. Our kids’ IQs tests are really our tests: What have we bequeathed them? Have we prepared them to be shining stars? When Charissa refused to let the issue rest, the school tested Erin for gifted again, in the fall of 2011. Again she was declined, though this time her IQ came in at 131. Meanwhile, Erin’s teachers reported she was performing right at second-grade level. She wasn’t gifted, they said, and she didn’t need specialized attention. She was just an average kid.
Early in 2012, Charissa decided to have her daughter evaluated at Children’s Hospital of Philadelphia. When the district got wind of this, she says, they offered Erin yet a third evaluation, this time to identify learning disabilities. The special-ed team found a speech impediment: Erin had trouble pronouncing “ng” and “th.” They drew up an Individualized Education Program, or IEP—the backbone of special ed—for speech therapy. “It’s something they do,” Charissa says. “They give you the very minimum.” She signed the IEP, but noted right on it that she was far from satisfied with what the district proposed.
Charissa would do anything for her children. All she’s doing, she believes, is what a parent should do. Oh, she worries—a little—that she’s crazy: “I can see how people get so consumed with this.” But what’s the alternative—to give up on her child?
Charissa went ahead and kept the CHOP appointment earlier this year. A psychologist there diagnosed Erin with dyslexia, ADHD and anxiety. Armed with that report, Charissa went back to the district—which still maintained that Erin wasn’t gifted or exceptional, and that her academics were “commensurate with the typical student.” Charissa disagrees. She believes Erin requires specialized reading support. Dyslexia specialists have suggested a program of at least two hours of reading services a week for two years. “Why isn’t the school providing this?” Charissa asks. “She’ll fail unless I get her services. To me, it’s obvious.”
Over our coffees, Charissa says she fears third grade will be far more challenging for Erin than second. She says she doesn’t care about the gifted program; she doesn’t think its humanities-rich format suits her daughter anyway. But she does want that reading program. She contacted private tutors, who charge between $65 and $125 an hour. “To pay for it myself would cost $600 a month,” she says—money she could put toward Erin’s college fund. Besides, time with a tutor at home would cut into Erin’s soccer practice and music lessons. Yet the district insists Erin isn’t disabled. “‘Does not require corrective reading support’!” Charissa quotes, thrusting a finger at the school’s evaluation. “They say I don’t push her. How can I push a child who locks herself in her room and refuses to read?”
She shows me samples of Erin’s classwork—an intricate drawing of an ant, a pint-size essay. The handwriting is neat, but the spelling is phonetic: “bin” for “been,” “thar” for “there,” “plas” for “place.” James Lytle, a professor at Penn’s Graduate School of Education, says experts generally agree reading and spelling can’t be assessed accurately until the end of third grade. Charissa, though, can’t help but project forward: “What happens when other kids discover she can’t read or write? How is that going to affect her emotionally?” She’s bitter and frustrated: “I do so much for the school,” she says, as all around us, moms just like her sip lattes and nibble scones. “And we sit there, and they offer me nothing.”
CHARISSA PICKED A TRICKY TIME to go to war over special ed. Prior to the passage of the Education for All Handicapped Children Act in 1975—an outgrowth of the civil rights movement—only one in five disabled kids was even enrolled in public school. Many states had laws barring them from classrooms. Carol Steiner, who’s based in Bucks County, began working as an advocate in the ’70s, after her son was identified as learning-disabled. “It was awful,” she says. “Children were being put in little rooms under stairwells, or in portable classrooms that were moved from parking lot to parking lot.” Gradually, organizations like the Learning Disabilities Association and the National Council on Disability worked to bring these kids into society’s mainstream.
Over the years, laws have expanded definitions of “disability” and mandated increased levels of services. But the federal government has never come through with the funding it promised when the EAHCA was passed. And Pennsylvania’s reimbursements to local districts for special-ed costs haven’t risen in years. For school year 2011-’12, Council Rock got just 4.2 percent of its overall budget from the feds—a 45 percent reduction from 2010. The state kicked in 14.8 percent. Local taxes make up a stunning 81 percent of the district’s budget.
And the ranks of special-ed kids keep going up: in Pennsylvania, from 13.4 percent of all students in 2000-’01 to 16.7 percent in 2009-’10—a jump of 52,000 kids, and the biggest percentage-point change of any state. What’s behind the rise? One factor is higher survival rates for premature babies, who often have neurological damage; another is changes in how disabilities are diagnosed. Nationwide, over the past decade, the numbers of kids with mental retardation, emotional disturbances and “specific learning disabilities”—a category that includes dyslexia, perceptual disturbances and brain injury—have all gone down. But autism diagnoses have quadrupled, while those for the catchall category “otherwise health impaired”—which includes asthma, heart conditions, ADD, ADHD and diabetes—have more than doubled. In the U.S., 13 percent of students are in special ed, but they account for at least 21 percent of all spending, with per-pupil costs roughly double those of regular ed.
With the stigma of a “disabled” label easing, parents are more willing to seek diagnoses. And some conditions seem downright trendy. A social worker at a private school for autistic kids—including students from public schools whose needs outstrip what their districts can provide—says she used to work with emotionally disturbed kids in an underprivileged area: “There was no parental involvement. You couldn’t get them to come in for a meeting. Now I’m in a situation where there’s a ton of parental involvement—some would say too much.” These parents, she says, are educated, wealthy, and all too willing to hire advocates and specialists for IEP meetings.
Under federal law, schools can’t withhold services from disabled children because of cost. The result is a funding bind, as state and federal aid for education continues to constrict. “It’s unbelievably unfair,” says the social worker, “that the federal government set this up so school districts would get reimbursed, but they never did. It’s a really sad situation. And people are very concerned that it’s going to get worse.”
It already has.
IN A SURVEY OF Pennsylvania’s school districts published in April, 58 percent of respondents said they were considering cuts to art and music programs, phys ed, electives and AP courses because of budget shortfalls. Over the summer, Harrisburg School District announced it was eliminating kindergarten, and would charge kids $100 to participate in sports. Chester-Upland jettisoned all art and music; Upper Darby was considering dropping elementary art and music as well as middle-school language and technology classes. Everywhere, teachers and support staff are being laid off. Class sizes are growing. And people blame special ed.
“The costs of special ed eat regular programs,” says Penn’s James Lytle. “Districts end up cutting art or music, and that generates antagonism. Meanwhile, special-ed parents get the districts to pay for all sorts of therapy—ballet lessons, horseback riding—that seem extreme.” He tells the story of two local physicians who informed an upscale district they were planning to buy a house there: “They said, ‘We have a special-ed child, and educating our child costs $250,000 a year. So you’ll have to include that in your budget.’” Each year, New York City’s special-ed program for three- and four-year-olds costs $40,000 per child. You can send a kid to college for less.
Special-ed advocates say exotic, expensive services are the exception. But it only takes one case of dolphin therapy to create an uproar over how “special” special ed should be. Enter the backlash. Last spring, a special-ed advocate glimpsed derogatory text messages the principal of Chester County’s Oxford Area High School sent during a student’s IEP meeting. An investigation uncovered emails to other staffers in which the principal referred to the student as a “psychopath” and compared him to “Hinckley, Booth and Oswald.” (The student, who reportedly has bipolar disorder, had previously been arrested at the school, charged with making terroristic threats and disorderly conduct, put on probation, fined, and ordered to take classes for anger management.) The otherwise popular principal, David Madden, was suspended by the school board, then reinstated after a “Save Dave” campaign by supporters. Commenters on a story about the situation that was posted on the Inquirer’s website exposed the fault lines:
The special ed gravy train (which is for the parents and the parasitic school boards who charge more for them) needs to be DERAILED. KEEP UP THE HONESTY!!!!!
The principal is the only honest person in the bunch. Time to stop coddling the psycho special eds. …
Connie Mohn of the Arc of Chester County, which provides services to the disabled and their families, was in that IEP meeting with Madden. “I was outraged,” she says. “If the principal is bigoted and impatient, that changes the climate for every student. The normal-ed kids don’t get to see adults embracing and valuing kids with disabilities.” Of the 39,000 instances in the nation’s schools in 2009-’10 in which kids were physically restrained or secluded in isolation, 69 percent involved the disabled. And disabled kids are nearly twice as likely to be suspended.
News reports said the family of the Oxford Area High student won a six-figure discrimination settlement. Such high payouts and litigation costs make districts “gun-shy” about stepping on students’ rights, says Lytle. Even some advocates aren’t unsympathetic. “What do you do with that child at Oxford High?” Carol Steiner asks. “The principal has a child who’s ripping up his building, and there’s nowhere to go for help.”
But for Baruch Kintisch of Philadelphia’s Education Law Center, which lobbies for disabled kids, even to raise the question of how to balance the rights of the many with the rights of the few is wrong. “Families with disabilities never get what their children really need,” he says flatly. “They have to put up with getting less. As a result, their children accomplish less in life.”
THERE’S ANOTHER PART TO CHARISSA STONE’S STORY, one that complicates it. Her 11-year-old, Amanda, is autistic. When I visit the Stones’ toy-strewn colonial in a quiet Newtown development, Erin, who has freckles and her mom’s dark hair, shows me how her Barbie’s outfit changes when you turn it inside out.
Amanda—same freckles, same hair—hides behind the sofa.
Amanda began getting services when she was still a toddler, through the state; she had a speech therapist, an occupational therapist and an itinerant teacher. All the care, along with her medication, was free. Yet when it was time to start kindergarten at Goodnoe, her local elementary school, she was denied special-ed status. Her testing was done by the same psychologist, Elizabeth Lalli, who later turned Erin down.
Charissa fought for services for Amanda. Her efforts intensified in the summer before second grade, after she and Amanda visited another family along with two boys scheduled to be in Amanda’s class the next year. The boys coaxed Amanda into a closet, then into taking off her clothes. “That was a turning point for me,” Charissa says. “I didn’t realize she was so naive. She wasn’t just ‘quirky’ anymore.” Charissa filed a police report, and demanded that the boys’ parents switch their sons to a different class. (Only one did.)
It wasn’t until fourth grade that Amanda’s status was finally changed to “autistic support.” Charissa rues the time that was lost. “Amanda had so many unnecessary therapies instead of the right ones,” she writes in an email. Amanda still struggles, especially socially. “You would not believe how cruel kids can be to each other,” Charissa says.
Nothing hurts a parent more than a kid who’s hurting. “It always starts,” Steiner says of antagonism between parents and schools, “because something hurts the child.”
COUNCIL ROCK SUPERINTENDENT MARK KLEIN is proud of the special-ed services his big, rich district provides: “Hearing aids, sign language—we go all the way up the continuum from minimal services in the classroom to catheterization in special classrooms to approved alternate schools.” Goodnoe Elementary houses classrooms just for autistic kids; there are aides, tutors, and social-skills programs that go far beyond what the law requires. The district incorporates IEP students in regular classrooms at rates above the state average. It spent $38 million on special-ed kids last year—19 percent of its budget. “It’s a real struggle to put the money we need from the regular budget to special ed,” Klein says, and yet they manage. Families move to Council Rock just for these services.
And yet there are parents who aren’t satisfied. “It feels to school districts like the parents are all lunatics who think their kids are geniuses,” sighs Steiner.
“‘Average’ is really an interesting facet,” Klein notes. “The average IQ here is about 117. So a kid with an IQ of 100 looks slow.” Council Rock is filled with families whose sights are set on Harvard and Yale: “We’re dealing with highly educated, litigious parents who are well aware of their rights.”
Conflicts between parents and the district, Klein says, tend to spring from expectations: “When I was an elementary principal and we’d identify a child as special-ed, the parents would ask: ‘When will you fix them?’ They want a cure. There’s never a cure.”
A suburban special-ed teacher who didn’t want her name used agrees: “Parents start to develop expectations for kids before they’re even born. When you have a child with a disability, those expectations change.” At the same time, “You see parents who are more anxious than they need to be. They don’t have any perspective of where their child falls compared to other kids.” Add to that the phalanxes of specialists and advocates available—often at hefty prices—to support such parents and accompany them to meetings and hearings. “An advocate’s whole business is based on finding stuff,” says the autism-school social worker. “You can have a beautiful IEP by the district, but the advocate still finds stuff. They’re working for a profit.”
James Lytle believes there’s been a sea change in how parents think about schools. “It has a lot to do,” he says, “with choices and vouchers, and parents seeing themselves as consumers rather than citizens.” In other words, they’re motivated by the needs of their kids, rather than by the public good. It’s a theory that University of Illinois-Chicago professor Pauline Lipman develops in her book The New Political Economy of Urban Education. “Neoliberals”—defined by Lipman as adherents to an ideology that promotes self-interest—“champion privatization of social goods and withdrawal of government from provision for social welfare on the premise that competitive markets are more effective and efficient.” It’s the impetus behind the Gates Foundation and what Lytle calls “all those high-tech backers of school choice.” In the neoliberal view, Lipman writes, education is “a private good, an investment one makes in one’s child or oneself to ‘add value’ to better compete in the labor market, not a social good for development of individuals and society as a whole.” Instead of being public citizens, parents become “strategic consumers” of what school districts have to offer.
That’s how Charissa views Council Rock. “I see the district,” she says, “as a company.” And a parent who can get that company to pay for special services for her kid is strategic indeed.
ON A HOT AUGUST MORNING, Charissa and her husband sit at a long table in a high-ceilinged room in the Council Rock administrative offices with their lawyer, Mark Voight. Push has come to shove; this is the due-process hearing for their claim that the district has denied Erin services she needs. At the head of the table is the hearing officer, Anne Carroll. Ranged across from the Stones are the school district’s reps: attorney Grace Deon (“Council Rock has great lawyers,” more than one special-ed advocate told me); supervisor of pupil services Rudy Lamberth; school psychologist Elizabeth Lalli; a reading specialist; a speech therapist; three of Erin’s past teachers, summoned here on their summer break. “I know this is supposed to intimidate me,” Charissa whispers, “but Erin would love it. It’s like This Is Your Life!” As the proceedings begin, she pulls a framed eight-by-10 photo of Erin from her bag and sets it on the table, facing the teachers and administrators. “This is just to remind everyone what this is all about,” she announces. “My daughter, Erin Stone.”
She has an ace up her sleeve. Just two weeks ago, she had Erin evaluated by an audiologist. While most of the tests were normal, one indicated a central auditory processing disorder, a condition that can make it hard to absorb information in noisy conditions—like an elementary-school classroom. The audiologist will testify; so will the CHOP doctor, about Erin’s diagnoses of dyslexia, ADHD and anxiety disorder, along with a few conditions Charissa hadn’t mentioned to me: asthma, irritable bowel syndrome, sleep apnea.
Over the course of four long days, witnesses will be sworn in, examined and cross-examined. Charissa will spend hours telling her daughter’s story. Chris won’t say a word. I’ve asked Charissa what he thinks of all this. “He agrees with me,” she said. “But he’s also just … he says, ‘Let it go; it will all work out.’ He understands and supports me, but I’m the one handling it all.” Her lawyer thinks their chances of winning are 50-50. Charissa estimates that Erin’s due-process hearing will cost her some $12,000.
The district’s witnesses are relentless in insisting that Erin is a normal, average kid, except for that speech impediment. Sure, she has trouble distinguishing between b’s and d’s when she writes, but so do lots of kids her age. They don’t see the problems Charissa cites—anxiety, anger, ADHD—when Erin is at school. The CHOP doctor will mention that because of Erin’s “oppositional behavior” at home, Charissa has been getting “parent training.” Grace Deon will ask the doctor about Erin’s history of “tantrums, distractibility, trouble with siblings, trouble relating to peers, hitting herself and others”: “Was this being seen in the school setting?” The doctor will answer: “That was in the home setting.”
Charissa knew what she was in for. The advocates had prepared her: The school would try to discredit her, make her out to be a bad mom. To imply she’s, well … crazy. “I don’t have any crazy clients,” Carol Steiner told me. “They sound crazy in the first phone calls we get. But they’re just determined. They’re all their children have. They’re life-and-death for their kids.”
On the last day of the hearings, Charissa makes one final appearance in the witness chair. The problem, she explains, is that the school district insists on using standardized checklists to diagnose kids’ problems. Amanda didn’t fit cookie-cutter checklists, and neither does Erin. Not her kids.
Grace Deon has a question: When teacher assignments for Goodnoe were announced over the summer, did you immediately call the principal to demand that Erin’s teacher be changed? Charissa says she did, and adds that the principal must have thought the change was a good idea, since she agreed to it. The principal couldn’t have agreed to it, Deon asks, with just a hint of edge, because she didn’t want to deal with you?
Charissa’s lawyer objects.
All these grown-ups. All this time. All this money. The late-summer sun pours through the windows of the hearing room. In two weeks, the new school year begins.
“Erin’s such a bright little girl,” Charissa tells the hearing officer, who will issue her ruling this month. “She has so much potential, so much to offer. The things that interest her are well beyond her age. But I go to the school for help, and they say, ‘Mrs. Stone, she’s average!’” She shakes her head in disbelief. “Third grade is going to be a disaster,” she says.