How CSF impacts on US school budgets, Wall Street Journal, 17 September 2011

From the Wall Street Journal business section, 17 September 2011 (story by Amy Dockser Marcus)

Wave of New Disabilities Swamps School Budgets

KENNETT SQUARE, Pa.—Christina Gustavsson says she loves school. But her teachers have had a tough time educating her.

In her freshman year at Kennett High School, 15-year-old Christina racked up five months’ worth of absences and never completed a full day of school. Sometimes, she had difficulty remembering assignments, completing homework or even waking up in time for school. Other times, she didn’t.

Christina has chronic fatigue syndrome, a condition whose symptoms have long confounded many medical professionals and now pose peculiar challenges for educators as more adolescents are diagnosed with it. In a time of tight budgets, public schools must consider how far to go to accommodate students with CFS and a range of so-called hidden disabilities that are difficult to observe, evaluate or understand.

By federal law, public schools are required to provide a “free appropriate public education” in the “least restrictive environment” to children with special needs. Interpreting those terms is a thorny task often left to the courts. But with CFS, there’s an added challenge: “It is very difficult to assess what the need is,” said Sharon S. Bennett, director of special education for the Kennett Consolidated School District near Philadelphia.

The Centers for Disease Control and Prevention estimates that more than a million Americans have chronic fatigue syndrome, a condition characterized by debilitating pain and severe fatigue, among other symptoms. There is no diagnostic or blood test, no known cause or cure. Patients are diagnosed based on a pattern of self-reported symptoms—which tend to flare and then subside.

Increased awareness in the medical community and among parents has resulted in calls for more research on CFS in adolescents. Researchers at Chicago’s DePaul University, who have been studying CFS among adults in Chicago for 18 years, estimate that as many as one out of 100 adolescents has the condition.

For educators, CFS is merely one of an expanding group of “hidden disabilities” increasingly being diagnosed in children, conditions that are debilitating but often not visible, including fibromyalgia, multiple chemical sensitivities, Crohn’s disease and migraines.

According to a May 2011 report by the Thomas B. Fordham Institute, a Washington-based education research group, students diagnosed with various chronic health impairments that sap their energy and hurt school attendance are one of the fastest-growing groups of special-education students. Their numbers have more than doubled since 2004, to 689,000 out of the nation’s 6.48 million special-education students. Only the autism category has grown faster, the report found.

The sharp rise in such diagnoses has strained the special-education resources of school districts, which are legally prohibited from
factoring in cost when deciding how to address a student’s special needs.

Nate Levenson, former superintendent of the Arlington, Mass., school district and founder of the consulting firm District Management Council, said special education’s share of school budgets has jumped to an average of 21% in 2005, from just 4% in 1970. His firm, citing 2005-2006 data, estimates that the average expenditure for special-education students is over $17,500, roughly double the figure for other pupils.

Much of that cost is borne by local districts, according to District Management’s research. Although school officials generally want to do the right thing, Mr. Levenson said, as budgets tighten, they are more aggressively scrutinizing doctors’ diagnoses that call for costly accommodations such as home tutoring.

Last year, for example, the school district in Middleboro, Mass., got in a disagreement with the father of a 16-year-old boy who had been diagnosed with a number of disorders, including attention-deficit hyperactivity disorder, anxiety and bipolar disorder. The dispute ended up being heard by the Massachusetts Bureau of Special Education Appeals, which didn’t disclose the name of the boy or his father.

The boy often got dressed for school then refused to leave the house, or wouldn’t get out of the car once his father arrived at school, according to the hearing record. From September 2009 through January 2010, he attended school only 13 days.

The boy’s father wanted the district to provide home tutors for him, and had letters from three physicians recommending the same, according to the hearing record. The school challenged those recommendations in court, proposing that the boy be part of a special program at the high school offering a mix of special-education and regular classes.

The school won. In making his decision, the hearing officer pointed out that when the 16-year-old refused to go to school, he watched TV, played basketball and rode his bike instead. The boy didn’t need to be at home to be educated, the hearing officer concluded; he just preferred to be there.

Daniel Heffernan, an education lawyer at Kotin, Crabtree and Strong in Boston who represents families in disputes with schools, said such challenges are particularly common with a hidden disability like CFS, which has no discernible medical cause and is viewed skeptically even by some in the medical community. With CFS, he said, there is more suspicion that “parents are trying to game the system.”

Sara Pickens, principal at Jones Elementary School in Severna Park, Md., says in 15 years in elementary-school education, the first contact she had with a student with chronic fatigue syndrome was earlier this year. After Sean Ostrowski, 9, was diagnosed in third grade, his mother Joanna Ostrowski says she didn’t want her son to participate in physical education or recess in order to conserve his energy for academic subjects. But she says that the school wanted to know why he couldn’t participate but went to lacrosse practice outside school. “He looks perfectly normal so people don’t want to treat him differently,” says Ms. Ostrowski.

Ms. Ostrowski says she explained to school officials that Sean was able to play for only 20 minutes with the team, but that she took him for social reasons and because he had all Sunday to recover. Ultimately, the school agreed to the request.

Ms. Pickens, the school principal, says given the school’s lack of experience with the condition, “You might wonder how he can play lacrosse but not participate in P.E.” But she says she was not skeptical of his diagnosis. “I wanted to understand the big picture,” she says. “Finding the right balance academically, socially, and physically has been challenging for all of us.”

Christina Gustavsson’s illness was diagnosed when she was 10, midway through fifth grade, as she struggled with pain, dizziness and constant fatigue.

Before her freshman year in high school, her parents met with the school to explain Christina’s condition. Christina understood from the outset that it was challenging to educate her. “Some days I can talk about Plato’s Republic,” she said in an interview at her home. “And some days I don’t remember my address.”

Together, teachers and the Gustavssons came up with a plan. Since it was hard for Christina to get to school by 8 a.m., they agreed she should start at 10 a.m. for science class, according to the family. She would then attend history, English and lunch, ending the day at 1 p.m. Math coursework would be done online. During the summers, she would take classes needed to fulfill any other graduation requirements, such as art or a foreign language.

The school felt this would allow her to move on through high school and ultimately graduate, according to the Gustavssons. School officials declined to comment on Christina’s case, citing privacy considerations.

But by the second week of school, Christina struggled to get up in the morning and started missing 10 a.m. science. She fell behind, unable to make up the missed labs. Her teacher alerted the family that Christina was getting an F.

In October, Christina and her parents met with Mrs. Bennett, the head of special education, and a special-ed teacher assigned as Christina’s case manager. This is when, according to the Gustavssons, the two sides discussed the notion of transferring Christina to an online charter school.

Mrs. Bennett said in an interview that she never recommended such a transfer and would have been barred from doing so. “School choice is a parental choice,” she said.

As a general matter, Mrs. Bennett said, frequent absences make it difficult for any student to succeed in a conventional school environment. “Most laws and structures are not designed for kids who don’t come in to school.”

The Gustavssons wanted the school to retain responsibility for Christina’s education. And Christina was adamant that she wanted more than a high school diploma—she sought an experience as similar to her healthy friends as possible. She dropped the science course, but stayed at Kennett.

Tutoring became another point of contention: Christina’s math teacher initially agreed to tutor her at home in place of classroom work. But the teacher was only available late in the day, when Christina’s symptoms usually flared. Christina kept canceling the sessions. Eventually, the teacher said she couldn’t continue.

The school struggled to find a state-certified alternative tutor who could meet Christina’s schedule. “Most schools that home-tutor use their own teachers, so after school is when they are available,” Mrs. Bennett said. If the student isn’t available then, you have a mismatch.”

In November, the family called Pennsylvania’s advocate for special education to complain about what they saw as foot-dragging in the search for a tutor. The state office responded with a warning to the school. The school said they were working on it.

Fed up with the delay, Christina’s mother, Michelle Gustavsson, hired a private math tutor, paying $40 per session. Christina was usually too sick to meet more than once a week, although she did make progress in geometry. (Mrs. Bennett said the school now covers the cost of this tutor, but Christina’s main math teacher retains responsibility for assessing her work and progress.)

By February, Christina’s health was so bad that she rarely came to school. She was making very slow progress with the online math course. An English tutor, paid for by the district, came to the house weekly, but Christina often said she was too weak to read. In history, too, she had fallen far behind.

The Gustavssons wanted Christina to start an online English class and to have a history tutor at home. At the end of the month, they exchanged emails with the school to try to set up another meeting.

In one email, Nils Gustavsson, Christina’s father, wrote that he was frustrated at how long it was taking to get Christina’s classes in order. Mrs. Bennett wrote back that the school was also frustrated. Christina “is not working on the courses she already has,” she wrote. “There is no point in starting something new when she isn’t completing what she already has.”

In late February, Mr. Gustavson and his wife, Michelle, took a stack of Christina’s school and medical files to their first meeting with Charles Pugh, an education lawyer in West Chester, Pa.

Mr. Gustavsson said the lawyer asked him what he wanted for Christina.

“I want her to have a normal life,” he told Mr. Pugh.

The lawyer asked the family to consider whether legal action against her school was the best way to achieve that. The Gustavssons thought not. They decided to recommit to working with the school on an education plan that would allow her as normal a life as possible.

School officials and the family met again in April. This time, they talked not only about how many credits Christina needed to graduate but also about how to capture the essence of high school for her. Mr. Pugh, who attended the meeting, said the district worked in good faith. “The district signaled early on that it wished to join with the parents to answer the question, ‘How can we accommodate Christina’s disability and meet her need for an appropriate education with her nondisabled peers?’” he said.

School officials agreed they might be able to better use technology, such as live Internet video feeds, to allow Christina to both learn and feel like part of the class. For tenth grade, Christina’s science and history classes would be taped. On days that Christina feels well, she would watch the class in real time online. For the other days, an archive of recordings would be created. When healthy, she would come to school for lunch and art class to maintain a connection to the Kennett community.

The Gustavssons plan to keep Christina in the high school through senior year for the experience. But Mrs. Gustavsson has concluded that Christina won’t get enough units to graduate. So the girl then will take the exam for a high-school equivalency diploma. “I have come to see that she won’t get a Kennett diploma,” Mrs. Gustavsson said. “I don’t see a path, unless Christina gets well.”

Write to Amy Dockser Marcus at amy.marcus@wsj.com