Advocating for Your Child with Arthritis at School

If an accommodation is to provide written notes for your child, ask how that will be carried out– will they be detailed or just an outline of the discussion? If the school refuses an accommodation, ask “why?” The answer may provide your solution, says Konkler-Goldsmith. For example, if the teacher cannot provide written notes because she only has them electronically, suggest they be emailed or saved on a flash drive. 

You don’t need to cave on important points, but you should be nice when communicating. “These are people who are going to have a long-term relationship with,” says Konkler-Goldsmith. “Being antagonistic or not having a cooperative relationship can be worse for everybody long term.” For example, instead of making demands, ask questions that will help you get to a solution and be conscious of how your tone comes across in email or in person. 

Follow-up with teachers and school personnel if accommodations are not met. It may help to make friends with or identify a school administrator to be your internal champion.

Learn the language and learn the laws, says Heidi Konkler-Goldsmith, a Berwyn, Pennsylvania attorney specializing in civil rights and special education. She recommends the U.S. Department of Education, Office of Special Education, the Arthritis Foundation website and the legal website Wrightslaw.com. Knowing your child’s rights and understanding the acronyms shows that you understand what you are pursuing and enables you to have open discussions with the school system, she says.

Keep copies of all written communication with the school, including letters you have submitted or received, emails you have sent, correspondence from healthcare providers, etc. If you have verbal communications, send a follow-up email or note summarizing the discussion and keep a copy. That way, if an accommodation is not honored, you’ll have written confirmation that it’s a part of your child’s plan.

Learn as much as you can about JA and be able to explain to teachers how it impacts your child directly. “You are the only person that really knows the life span of the disability, all that has been tried and what your child needs,” she says. Disclose anything about your child’s medical condition that may affect school performance. That may include personal information, like how you child is coping emotionally. Joining the PTA/PTO or other school committees can give you an opportunity to educate parents and school personnel about juvenile arthritis. You may download brochures to hand to your child’s teachers here. 

Know your child’s strengths and ability to communicate with teachers about his or her needs. You can role-play to help your elementary or middle school student feel comfortable about speaking up. Help your young adult become a self-advocate as he or she prepares to live independently.

Some like to have a notebook so each teacher or specialist can write down what happened in school that day, others prefer emails or phone calls. You could also send an email or letter to teachers each year explaining the disease, the medications your child is on and the things he or she may need throughout the year. 

Build a network of support within your family and the community. Connect with support groups (both online and face-to-face) so you can interact with parents of children living with arthritis and learn from their experiences. 

Involve others who work with your child –physicians, occupational therapists, physical therapists and anyone else who can help make your case about accommodations. If they are unable to attend, get a note or a signed release that allows a representative of the school system to speak with the doctor or professional. Consider bringing friend and family members for support – they can remind you of points to make or questions to ask. 

If there are issues, 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.  In cases where it can’t be resolved, there are ways to file a dispute, a process that is sometimes long and involved, but often pays off.

Think about accommodations before the meeting and write them down. For example, if your child’s arthritis mainly affects his hands, he may benefit from note-taking assistance. For a child whose arthritis affects his knees, use of an elevator may be a desired accommodation. Also prepare for the worst and consider how your child's needs may differ during a flare.

During your IEP/504 meeting you will be presented with your child’s IEP/504 Plan to review and sign. “I’ve had many parents tell me their district agreed to provide something that is in their IEP or 504 Plan, but when I look at the document, it’s not there,” says Konkler-Goldsmith. It’s best to take it home and read it carefully before signing.

An IEP or 504 Plan is an individualized plan that addresses how your child is going to be accommodated or receive specially designed instruction during the school day, says Konkler-Goldsmith. “If an accommodation is in there, districts are required by law to provide it. If it’s not, they are not required to provide it.” Reviewing the document before you meet with the school district allows you to determine what changes and additions you want, so you can discuss the desired changes in your meeting.

If possible, having an occupational or physical therapist in the classroom can be helpful. It allows the therapist to observe and work with the child in his day-to-day environment, versus an office setting. It also allows the therapist to help the teacher work with your child. Children may also miss less class time due to therapy pullouts.