For many young people with lupus, the transition to caring for themselves as adults is challenging.
By Jenny Thorn Palter
We always say that having lupus is full of uncertainties—symptoms that come and go, unknown factors that trigger flares, not knowing how you’ll feel from one day to the next. So it’s no surprise that lupus means missing days on the job. For children and teenagers, that “job” is school.
Kim Messick’s daughter, Sarah, was 16 when she was diagnosed with lupus in 2007. “It was the summer before her junior year,” Messick says, “and she had all these weird symptoms: mottled skin, swollen feet, nausea, low-grade fever.”
When the symptoms worsened, Messick took Sarah to the local hospital emergency department. “It took two days for the lab work to confirm that the cause was autoimmune-related and not leukemia or a bad infection,” Messick says. “Sarah was very, very sick, so once a bed opened up, she was transferred to the Kentucky Children’s Hospital in Lexington and spent almost two weeks there.”
Because several of Sarah’s teachers visited her in the hospital, Messick assumed school officials were aware of Sarah’s situation. “It was not until Sarah’s guidance counselor called to ask if I knew she had missed seven days of school in a row that I realized they didn’t know!”
Messick is a nurse at Shriners Hospitals for Children in Lexington, so she was aware of the impact illness can have on school attendance, but it was Sarah’s guidance counselor who brought up the subject of a 504 plan. “He was very proactive about the whole thing,” Messick says. “He got all of her teachers together at a meeting, and they hammered it all out. They wanted to know, ‘What can we do to help out?’
The 504 Plan Explained
A 504 plan lays out accommodations and modifications for a student with a medical condition or physical disability to have the opportunity to perform at the same level as his or her peers. The plans are overseen and enforced by the U.S. Department of Education through its Office for Civil Rights. Accommodations might include an extra set of textbooks to keep at home, a tutor, or a tape recorder for taking class notes.
Messick notes that 504 plans are similar in all schools, although they aren’t exactly the same for each student. “The child’s diagnosis is included, as submitted by the treating physician, with details on how the illness will affect the child in school, and the recommendations are designed to help the child meet his or her educational goals,” she explains.
Sarah’s 504 plan included lots of things Messick felt were important. For example, because Sarah was taking immunosuppressive medications, she was allowed to keep hand sanitizer at her desk, and she was allowed to change her place in the classroom if a sick classmate was in a nearby seat. When she missed school because of doctor appointments or illness, she had as much time as she needed to make up the homework. Because of the way lupus affected her kidneys, she was allowed to go to the bathroom whenever she needed to, even if it was mid-class.
The 504 plan is also available for students attending public colleges and universities. The summer before Sarah’s freshman year at Eastern Kentucky University in Richmond, the Messicks contacted the university’s Office of Student Disabilities. “We met with them and gave them Sarah’s medical information,” Messick says. “We requested that she have a centrally located dorm her first year, so she could be close to her classes. Sarah is hearing-impaired, and they offered assistance with that, too. If she had been immunocompromised, she could have had a private room. They were really good about working with us.”
Shannon Miller had a very different experience when her daughter, Cassie, now 12, became ill with lupus in March 2010. The family was living in Twin Falls, ID, a town of 44,000. Cassie was the only child her age with lupus in the area, and school officials didn’t know anything about the disease or its health complications. “Students were only allowed nine absences in the school year, and between being in and out of the hospital, local doctor appointments, and a 10-hour round-trip drive to the rheumatologist in Salt Lake City, Cassie was missing a lot of school,” Miller says, “but no one at the school ever mentioned a 504.”
Despite doctors’ letters saying that a child with lupus could not be restricted to only nine absences and should be kept as stress-free as possible, school regulations required Cassie to appear at formal meetings to explain why she was skipping classes.
“Cassie’s teacher said she thought the doctor and I were making [Cassie’s lupus] more than it really was,” says Miller. “The children aren’t allowed to carry backpacks at school, so Cassie had to walk back and forth to her locker all day long, and we couldn’t get an extra set of books for her to keep at home, so she had to carry them all with her every day. It was Cassie’s rheumatologist who finally asked us why she did not have a 504 plan in place. He was also the one who finally called up the school to insist on it.”
At the end of the school year, Cassie’s teacher failed her for all the absences. It was the last straw. “Cassie was getting punished for being sick and missing school,” Miller says. “We felt we had no choice but to take her out of that school and put her into a different school system in another town.” The Millers sent Cassie to live with Shannon’s mother in Kimberly, ID, where Cassie enrolled in the same school Shannon attended as a child. The Miller family made the permanent move to Kimberly this summer. Miller says Cassie has an amazing local doctor now.
“We watched Cassie’s great-aunt with all of her diseases—rheumatoid arthritis, lupus, fibromyalgia—and we’ve seen what Cassie may have to go through, but she’s a strong little girl,” Miller says. “She still goes cliff-diving with her dad when she’s feeling well, and she still gets special treats when she’s sick. The 504 makes life easier for a child who needs some help to do as well as the other children.”
However, while the 504 can provide help to meet physical challenges (documented by medical personnel) to prevent a child from falling behind academically, it cannot address gaps in learning caused by the health disorder itself, such as slower problem-solving skills or trouble concentrating. Also, because services mandated by a 504 are not federally funded—the money comes from the school’s budget—some schools may have difficulty providing the required services. That’s when the IEP comes into play.
When the IEP Comes Into Play
The Individualized Education Plan or Program (IEP) is part of the requirements of the Individuals with Dis-abilities Education Act (IDEA). The Department of Education oversees IEPs through its Office of Special Education and Rehabilitative Services. IEPs are used for students who have mental, emotional, physical, or learning disabilities, but also for students whose health impairment is compromising academic achievement. This is what distinguishes the IEP from the 504 plan.
The first step is to determine whether the child needs an IEP. School staff must evaluate the child’s educational disabilities to determine if he or she qualifies for assistance. (If the child is found to be doing fine academically and not falling behind in achievement, then there is no disability for which an IEP is needed.)
If the evaluation does indicate that accommodations would be helpful, an IEP meeting is scheduled with the parents and school personnel to discuss the child’s needs. Only then can an IEP be written. Although the law does not specify what the IEP should look like, each IEP should be as clear and useful as possible, and must be reviewed at least once a year.
The IEP should identify 1) the academic problem, 2) the service or intervention to be provided to meet the academic problem, and 3) measurable goals that the interventions or services are meant to reach; for example, a child with lupus experiencing cognitive dysfunction might need extra time for taking tests, or a home tutor if classes are being missed.
In addition to parents, teachers, school administrators, related services personnel, and the child (when appropriate), the IEP team may include a psychologist, a physical therapist, and others, depending on the child’s specific needs. The IEP is intended to be a collaborative document, and everyone at the meeting contributes to its creation. The school staff can reject what parents want in the document, but parents, as well as their own advocates for the child, can dispute aspects of the IEP if they feel it should have goals or interventions included or omitted.
Elizabeth Exler, of Devon, PA, whose son, Scott, now 18, was diagnosed with lupus in third grade, quickly realized that missed school days were the norm, not the exception, and that her son would need accommodations to keep up with his classmates.
“We started out with the 504,” Exler says. Tutoring helped Scott keep up in some classes, but in others, it wasn’t enough. “For example, Scott needed to have home-based instruction for math because he was always missing key instruction; math is taught in a logical progression, so, in many cases, lessons cannot be mixed up.”
And because Scott didn’t have the time to take as many elective classes to fulfill high school graduation requirements, he needed those requirements to be adjusted.
Charles Merrill, Psy.D., a psychologist in private practice and a former New York City high school psychologist and teacher for 35 years, says large schools and school systems usually have standard operating procedures for dealing with sick students. But sometimes, smaller schools are unable to deal with the impact of lupus on a child. “When lupus is not well understood, school administrators who see a child missing school day after day will be saying, ‘What does this mean? Is this child just shirking classes? What’s going on?’ The parent has the challenge of explaining lupus to them.”
Merrill says sometimes it’s better to go first to the school-based support team members, such as the school psychologist or guidance counselor, instead of starting with the child’s teachers, who are often overburdened. Parents may even want to get advice from an organization that provides advocates for children in their state, but it’s not always necessary.
“Generally, the school system administrators are not looking forward to the opportunity to spend more money. But most principals and teachers are perfectly willing to accommodate a child’s educational needs when there is an illness or other factor that is affecting the ability to learn.”
Preparing for Sick Days
Exler is a firm believer in the value of both the 504 and the IEP. “All children, no matter whether in kindergarten or 12th grade, need to know they can go to school and learn with the other children, and have the confidence that, if they get behind, there is a solution in place to help them get back on track,” she says. “That solution needs to be organized and structured as in an IEP or the student gets lost, and the teachers, no matter how nice and understanding they are, do not have time to deal with the situation.”
Exler adds, “My advice to anyone dealing with a child with special needs for education is this: Anticipate the need, get ahead of the curve, and get an IEP now. Don’t wait for the child to get behind in school—that will be frustrating for not only the child, but the parents and teachers.”
For IEP information, visit the U.S. Department of Education Web site, idea.ed.gov/explore/home, and click on Individualized Education Program in the green box on the left.Or, call 800-USA-LEARN (800-872-5327) or write to U.S. Department of Education, 400 Maryland Avenue, SW, Washington, DC 20202. Spanish-language information is available.
Kidshealth.org offers information on balancing academics and illness. Parents: kidshealth.org/parent/system/ill/academics_illness.html#cat172. Teens: kidshealth.org/teen/school_jobs/school/hospital_ stays.html#cat20179.
When Mary and Albert Luciano found out in 2008 that their daughter Erin had lupus, they were determined to learn everything they could about the illness.