You met with your child’s teacher or coach about his or her T1D, you have a written plan, and then nothing goes according to the plan. You aren’t the only one. It happens all too often. Whether it’s at school, at camp, or in an after school activity, we know it is frustrating when you have been proactive to get everyone on the same page and then someone gets off the rails! What should you do (and not do)? Here are our tips:
- Take a deep breath. Before you lash out by text or email, don’t get into the details of what went wrong electronically, but politely request an in-person meeting. A nasty gram is a quick way to break down communication and create a confrontational situation. Also, bring a 3rd party to moderate if you are afraid you are going to loose your cool (your spouse, a nurse friend, your certified diabetes educator).
- Avoid threats like “We have legal rights,” or “I’m not afraid to call a lawyer”…. until you have explored all other avenues for resolving the issues. Most issues result from 1. a failure of communication (not necessarily with you, but a failure of your primary school contact to communicate the plan fully to everyone else on site) or 2. from lack of education, a misunderstanding, or fear of the disease (never having seen a glucose meter, or not understanding the technology). So, take the time to answer all the questions, and try not to view questions and concerns as ignorant or threatening. Print off information, fact-sheets and brochures from the ADA and JDRF websites and bring them with you. Share information about the disease and management requirements from reputable sources. Don’t assume nurses are trained in diabetes management, but respectfully ask to demonstrate all the steps of checking blood sugar, giving an injection, or delivering a glucagon.
- Make sure you are meeting with the decision-makers. If you are having an issue with a staff-person, a teacher, a volunteer, an assistant, be polite and try to work it out with them, but then make sure you ultimately meet with someone who has the authority to resolve the issue and help you implement a corrective plan (the principal, the head nurse, a manager, an owner). Further, remember that one black sheep doesn’t have to ruin the entire relationship. Find an ally, someone who gets it, and involve that person in every conversation, if possible.
- Don’t rely on one person to communicate the plan to everyone else involved. Once the issue has been “resolved” and a corrective plan reached, politely request that all the players participate in follow-up meetings to be informed of the agreed plan. Ask to give every person who will play a role in your child’s care (from administrators, nurses, teachers, to assistants) an opportunity to meet with you, review the plan, ask questions, and discuss concerns. We know it’s practically a full-time job for a T1D parent, but try your best to be flexible, accommodate schedules. And remember, schools have hundreds of students with hundreds of issues, IEPs, physical, learning, social-economic, and emotional needs that have to be factored into what they can reasonably accommodate.
- If, and only if, all else fails, call the American Diabetes Association legal advocacy call center or email them. They can connect you with a local lawyer who can help to answer your questions and empower you with the information you need to advocate for your rights. Law suits are rarely the answer, but knowing your rights is always a good idea. For more information: visit the ADA’s Safe at School site and request a School Advisory Toolkit from JDRF.