Juvenile Arthritis on the College Campus

By Sonya Collins

The college search and transition into university life are a big deal for a young adult. You and your child will want to consider all the criteria – a school’s academics, location and cost – that most high-schoolers and their parents do. But, when your rising college student lives with arthritis, there are other factors to consider and plans to make, too.

Visit Campus First
Before your high schooler commits to any school, be sure he/she can get around it; that student housing is close enough to classroom buildings or that transportation is available.

Register for Disability Services
Once your child has chosen a school, make sure he or she registers with the Office for Students with Disabilities right away. If, for example, your college student registers for services only after missing a test due to a flare, the absence might not be excused.

“Accommodations are not retroactive,” says Terri Massie-Burrell, PhD, Director of Student Disability Services at Johns Hopkins University Homewood Campus. “It’s better to be registered for services and not need them than not to have them when you do.”

Services that your college student may be eligible for include:

• Priority registration, which could help your child choose classes near each other or create a schedule that includes ample travel time between classes.
• Access to housing in a preferred location, such as the first floor or near the courses in your son or daughter’s major.
• Notetaking services.
• Excused disability-related absences.
• Ability to drop a semester or a class due to health problems without penalty.

“If students let us know about their disability up front, we can work with them,” says Massie-Burrell, “but once classes and rooms have been assigned, it’s not always possible to change things.” Registering for services simply ensures that your rights are protected. “It is private and confidential. It’s up to the student whether to share it with faculty members.”

You can learn more about your child’s legal rights through the U.S. Department of Education Office for Civil Rights.

Create a Health Care Plan
Before your college student moves to campus, if that’s the plan, know where he or she will go for health care and prescriptions. If school is out of town, find a primary care doctor and rheumatologist there in advance. “Your college town is likely where [your son or daughter is] going to need the most help, not when [they’re] home for the holidays or the summer,” says Jennifer Ziegler, JA Transitions Director, Arthritis Foundation.

Learn which health care services are available on campus. Look into student health insurance in case it offers benefits and advantages that your current plan does not.

Prepare Your Child to Be His/Her Own Advocate
Through high school, parents, teachers and school counselors advocate for students with special needs. In college, students must advocate for themselves. In fact, federal law prohibits colleges and universities from sharing certain student information with family members.

“We want to work with family members if the student wants that support system, but the key is that students are able to express their needs. They will have to do it numerous times throughout their higher education experience,” says Massie-Burrell.

That is, parents can’t email professors to explain that their child missed class due to an arthritis flare. The student has to do that. On that note, your child should write those emails in advance, Massie-Burrell suggests. If your child’s pain is so intense that he or she can’t make it to class, he/she might not be able to type an email either. Students with disabilities should save an email in their drafts that only requires them to hit send.

Students don’t even need to disclose what their disability is. They might say, I have a disability that prevented me from coming to class today. I am registered with the Office for Students with Disabilities. I will come to office hours to discuss it.

Just Breathe
College will no doubt bring all kinds of new stress, and that could trigger a flare. “One of my major flares was my first year in college,” says Ziegler. Remind your college student to keep that stress in check. “[They should] find something that will relax [them] on campus – yoga, meditation or just a walk without technology,” she says. “You’ve got to take time to breathe.”