After Jonathan Seaman began missing day after day of first grade because of inhibitor complications and hospital stays, his teacher suggested she and his mom, Dana, keep a daily communication journal to help Jonathan stay on track. The teacher shared information about assignments Jonathan was struggling with or needed to complete. She also let Dana know if he was holding his arm funny during class. Dana, in turn, reported if Jonathan had woken up with a bleed or new bruise.
“I’m not sure if I got lucky or if most teachers would be so on top of things,” says Dana, of Brick, New Jersey. Jonathan’s teacher also brought his assignments home and tutored him there. With her help, he completed first grade on time, despite missing more than 70 days of school. The 7-year-old, who has mild hemophilia A, started second grade in September 2011.
Some children and teenagers with bleeding disorders miss dozens of school days, whether from falls that lead to hospital visits, repetitive joint bleeds, port infections or inhibitor complications. But by taking a proactive team approach, parents can work with teachers and school staff to ensure children keep up with their studies, get the support they need and finish each grade on time.
Putting Plans in Place
Before the school year starts, it’s important to inform school personnel about your child’s bleeding disorder and develop an individualized health plan. That way a plan is in place—before the absences accumulate.
“Children do phenomenally well today with hemophilia,” says Sally S. Wright, MSW, LCSW, a social worker at the Hemophilia and Thrombosis Center at the University of North Carolina at Chapel Hill. But they need an individualized healthcare plan at school to prepare for those unexpected absences and bleeds, she says. Don Molter, career counselor for the Indiana Hemophilia & Thrombosis Center in Indianapolis, encourages parents to keep the communication going with teachers, the school nurse and other staff, to make sure their child stays on course. “If you wait until they’ve missed 10 or 12 days, it may be too late,” he says.
A health plan should outline the child’s disorder, potential complications and what to do in case of a fall or unexpected bleed, Wright says. It should also include multiple phone numbers to contact the parents.
IEP and 504 Plans
Beyond a health plan, parents may choose to request a 504 plan or an Individualized Education Program (IEP). Under the Rehabilitation Act of 1973, a 504 plan is a written document for students with medical issues that outlines their specific accommodations. An IEP, available under the Individuals With Disabilities Act, is for students in the special education program. To qualify for an IEP, students must undergo testing. Students with bleeding disorders may be able to qualify under the “other health impaired” status. (See “Learn More.”) Molter recommends that parents whose children have had an intracranial hemorrhage request neuropsychological testing through the hospital; they can present the results to the school when requesting an IEP.
[Steps for Living: Sample IEP (.pdf)]
Accommodations to consider for a 504 plan or IEP include a designated student note-taker or tape recorder; an extra set of books and school supplies at home; and a system to fax or e-mail homework to a student’s house or the hospital. The plan should also include an agreement that all missed days and tardies are excused absences when they relate to the bleeding disorder. It should also outline what activities students are exempt from and which ones they can participate in during physical education and recess. They may be able to stay involved by keeping score or serving as a referee in gym class, instead of sitting out altogether.
[Steps for Living: Physical Education, Sports Teams and Recess]
Accommodations may not be automatically made for a student, though, because the school must pay for whatever is agreed upon in the 504 plan, Molter says. It’s up to the parents to determine what their child needs and to request it. “Advocate for yourself and your child,” he says. The key is to be creative and thoughtful, but to also be appropriate. “You’ve got to be realistic in your demands. Just because you have a kid with severe hemophilia doesn’t mean the school will provide a personal aide.”
Although a 504 plan is often more appropriate for children and teenagers with bleeding disorders, some schools prefer IEPs. That’s because schools receive federal funding for IEP accommodations, but not 504 accommodations, says Jennifer Little, MA, PhD, founder of Parents Teach Kids in North Bend, Oregon. Parents Teach Kids identifies educational deficits in children and provides recommendations to address them. The funding that comes with the IEP designation is particularly helpful if the schools need to purchase laptops or other expensive technology for students, Little says. She taught special education for 35 years in nine states.
[Steps for Living: Federal Legislation]
Alternatives to Regular School
Even with well-thought-out accommodations, students who miss school frequently can fall behind. Today’s technological advances can help them catch up. Molter works with a couple of Indiana students who have used Skype™, a software program that allows users to conduct a live video chat in real time at no charge. (However, there may be some fees if a Skype user is calling a telephone, rather than another computer.) One Indiana middle school boy with severe hemophilia A used Skype from the principal’s office for a week when his school’s elevator was broken. He had injured his foot and couldn’t use the stairs at his school, Molter says. A first-grader with severe hemophilia A used Skype from home for a few days while he recovered from a bleed. Some schools may also be willing to set up webcams to allow students to attend their classes virtually.
After several lengthy hospital stays, Lindsay Collins, 19, of Live Oak, Florida, signed up for her school’s hospital-homebound program her junior year. The school provided a teacher for one-on-one instruction in the hospital. Collins has severe hemophilia A and type 3 Ehlers-Danlos syndrome. She has had 14 knee surgeries. Larger hospitals often have hospital schools, which can provide direct instruction or work with the child’s regular school, faxing or e-mailing schoolwork back and forth.
When it became difficult for Collins’ small high school to provide for her needs during extended hospital stays she switched to an online high school, Florida Virtual School. She did her coursework at her own pace when it was convenient. Collins completed her assignments online and communicated with teachers through Skype, e-mail, webcams and phone calls.
Michael Bishop, 18, of Findlay, Ohio, also found success with an online high school. Bishop, who has severe hemophilia B and is allergic to factor IX products, had a 504 plan that worked well through most of his schooling. But in high school he had more frequent knee and ankle bleeds. He had arthroscopic surgery on his right knee freshman year and on his left ankle sophomore year.
Although he was allowed to turn in schoolwork late and had a tutor, Bishop began to fear that walking around his large, two-story high school was causing his bleeds. His high school offered a digital academy, so Bishop took classes online his last two years. Most of the classes were slideshow presentations with voiceovers.
“I would scan my work, and the school would print it, correct it and scan it back to me, so I would be able to see the corrections,” he explains. “Since it was all online, the instructors were really good responding to e-mails and questions.”
Before students choose an online high school, they may be able to adjust their class schedule to allow them to stay in regular school, Molter says. Students who are often late to school because of morning infusions or bleeds could switch to a first-period study hall so they aren’t missing a class. Those with frequent doctors’ appointments could switch to a last-period study hall and schedule doctors’ visits at the end of the day. Students who have had an extended absence after a hospitalization or surgery could drop a couple of classes or switch to a half-day schedule, Molter says.
Molter recommends asking the elementary school to grade students only on the work they’ve completed, not on what they’ve missed. “Everything should be individualized,” Molter says.
Bishop is now a freshman at the University of Findlay. He was attracted to the school, in part, because he can commute from home and the campus is only about two blocks long. Although Bishop got a knee bleed the first week of classes, he is confident he’ll be able to stay in college and complete his creative writing major.
Before attending Findlay, Bishop spoke with staff at the university’s disability office to make sure the school could provide for his needs. “When I have a bleed, I can just e-mail the disability office and they’ll tell all my professors what’s going on; my professors know I have hemophilia,” he says. “We set up something so I can turn in work a little bit later than most people. If I’m late to class, it’s not a big deal.” (See sidebar “College Considerations.”)
Partnering With Your HTC
Hemophilia treatment centers (HTCs) can help families teach school personnel about bleeding disorders and explain which accommodations are necessary. Sometimes HTC staff can attend meetings at the school; other times, they will prep parents on how to advocate for their child. “Parents need to come in as an educator because they are teaching the staff about their child’s needs,” Little says.
At most schools, your child with a bleeding disorder may be the first it has encountered. “I remind the parents that they have had four or five years of learning about hemophilia,” says Ellen White, RN, MSN, hemophilia nurse coordinator at Newark Beth Israel Medical Center in New Jersey. “Now they’re presenting a child to a school nurse and to a teacher who don’t know much about bleeding disorders.” To help parents and caregivers, White has developed a PowerPoint presentation that can be used to educate schools about hemophilia. (See “Learn More.”) She encourages parents to be prepared and speak with confidence. “I tell families to try not to show any of their fears and concerns.”
By planning ahead, staying in frequent contact with school personnel and adjusting accommodations as needed, parents can ensure their children are keeping on pace with their schoolwork, whether it’s spelling or advanced composition. “Usually as long as there’s open communication, it works out in the end,” White says. “The most important thing is the child is educated—it’s up to the adults to come up with some kind of plan to do that.”
[Steps for Living: Consider the Whole Child]