How to Be an Effective School Advocate for a Child with Juvenile Arthritis
Doctors, educators and parents offer tips for working with schools and understanding a child's educational rights.
By Sara Baxter
When 6-year-old Emily Smith came home from school one day, she told her mother that she had to do push-ups in physical education (PE) class. Such a remark may not be unusual for some kids. But Emily, who was diagnosed with juvenile arthritis (JA) four years earlier, couldn’t bend her wrists. Her teacher did not believer her, and made her do the push-ups anyway.
“Hearing that filled me with anger, frustration and fear,” recalls Liz Smith, Emily’s mother. “So I marched right down to the school that afternoon and demanded a meeting with the principal.”
The principal immediately suggested that a 504 plan be developed for Emily. A 504 plan is a legal document that lists the accommodations that a child needs at school, such as not being required to participate in PE. The plan is based on Section 504 of the Rehabilitation Act, a federal law that entitles children with disabilities to modifications and accommodations that will provide them equal access to an education.
“Looking back, we should’ve arranged for a 504 right away,” says Smith. “When Emily started at the school, I didn’t think she needed one, as the disease was under control. But after Christmas that year, she began to decline rapidly to the point where she couldn’t hold a pencil or walk very well.”
Kim Root found herself in a similar situation. Her 9-year-old daughter, Maggie, was diagnosed with juvenile arthritis just before her third birthday. It was under control until she developed a serious eye complication of JA called uveitis. Uveitis is inflammation in one or more of the inside structures of the eye. It requires immediate medical treatment.
Uveitis caused cataracts in Maggie’s eyes, leaving her legally blind. An emergency meeting had to be called to get Maggie an aide to help her navigate her school and her assignments.
“I had to educate myself quickly on what a 504 plan was and what our rights were,” says Root. “We were lucky it all worked out.”
Sometimes, even with proper documentation in place, a school or individual may fail to make an accommodation or presents an obstacle. Parents need to be persistent and make sure that teachers are well informed of a child’s support needs. “Just because a 504 plan is in place, don’t assume the teacher knows about this,” says Josie Heeren, a third grade teacher at East Park Elementary School in Danville, Ill.
Here are nine important things to think about if you have a school-aged child with juvenile arthritis.
Be prepared. “I view 504 plans as disaster planning,” says Harry L. Gewanter, MD, FAAP, FACR, a rheumatologist in Richmond, Va. “You may never need it, but it’s good to have one in place as a safety net.” Educate yourself about 504 plans and how they are implemented and monitored in your school district. It’s important to understand what may be happening in other schools. The 504 coordinator for your school district is a great resource. A school needs checklist can help you consider the ways your child’s condition may affect him or her in school. You don’t want to build a plan only based on your child’s current condition. Consider how your child's needs may differ during remission or a flare. Address all the needs in the plan even though the school may not need to actively deliver on all of them. Talking to the school about potential issues that may occur will give them time to determine how to implement an accommodation, if and when needed. Planning ahead can eliminate stress that might occur when you need a fast turnaround on an accommodation.
Document everything. Keep copies of all written communication with the school, including letters you have submitted or received, emails you have sent, correspondence received from healthcare providers, etc. Dr. Gewanter suggests that, if you have verbal communication on issues, you send a follow-up email or note summarizing the discussion and keep a copy.
Bring support to meetings. Bring a family member or friend to any meeting for moral support as well as to take notes for you so you can concentrate on the conversation. You might consider inviting your child’s doctor or nurse to a meeting if you need help explaining your child’s medical condition. You may have to pay a fee, but it might be worth it in the long run.
Establish a routine form of communication. “Some like to have a notebook in the child’s backpack so each teacher or specialist can write down what happened in school that day,” says Cami Okubo, a principal at Argonne Elementary in San Francisco. “Others prefer emails or phone calls. Whatever the method, it’s important to have positive communication.” Smith says she wrote a letter to Emily’s teachers each year before school started explaining the disease, the medications she was on and the things Emily may need throughout the year. When she was in middle and high school, an email was sent to the team of teachers.
Follow the chain of command. Start with the teacher, then move to the principal and, if necessary, the district administration. Interactions along the way should be documented to provide a clear record of what has transpired. Cheryl Grant, a family engagement specialist for the City Schools of Decatur in Decatur, Ga., who helps parents of children with special needs connect with resources within the schools and the community, suggests giving teachers two to three days to respond before going up the chain.
Be persistent. Caitlin Ryan, 16, has had a 504 plan in place since she was in first grade. In middle school, she started receiving zeroes in some of her classes for missed work, even though her 504 plan specifically stated she was allowed to make up work when she missed class due to her arthritis. “I had to keep sending the 504 to her teachers, asking them to let her make up the work,” recalls Caitlin’s mother, Colleen Ryan. “It was frustrating, but I copied the vice principal and the counselor, and they were advocates for her. It finally got resolved.” Root agrees: "Find that one person that can be a champion for you, who can take you through the process. In Maggie's case. it was her teacher."
Be careful of your tone. “If you email a teacher, be careful of the tone and beware of using all caps,” advises Grant. It's easy to become very angry over an issue with your child, but it’s not always the most effective way to get that issue resolved. “By asking questions rather than making demands, you can convert a confrontational situation into a brainstorming session,” Dr. Gewanter says. “Present the issues, and ask, ‘How can we work together to solve this’ or ‘What have you found with successful in similar situations in the past?’ Such an approach is more collaborative.”
Get involved. Joining the PTA/PTO or other school committees is a great way to establish relationships with school personnel and other parents. This provides you with an ongoing platform to educate school personnel and other parents about your child’s strengths, issues and needs.
Join a support community. Although your child maybe the only one in the school with arthritis, causing you to feel isolated, there are other parents dealing with similar issues and challenges. Parenting blogs and other online support can be a resource for tips and best practices for navigating school for your child.