Q: We had to evacuate our home in New Orleans and move to a new community in Dallas, and I’m worried about enrolling my child in a new school that doesn’t know about his diabetes or his care plan.
A: From Lisa Shenson, member of JDRF’s Online Diabetes Support Team, mother of a daughter with type 1 diabetes, and an advocate for the rights of children with diabetes…
If you are enrolling your child in a new public school, either on a temporary basis or for a longer period, it is important that you take the following steps to ensure appropriate diabetes care for your child. (This information also applies to private schools that receive federal funding.)
- Inform the school that your child has type 1 diabetes. If the school does not already have students with type 1 diabetes, you may need to explain that this diagnosis requires constant medical attention and the entire staff needs to be trained in how to care for your child.
- Send a letter to the school formally requesting a 504 plan. The federally-mandated 504 plan is a legally-binding written agreement between you and the school that explains all of the reasonable accommodations to be made for your child due to his/her diabetes diagnosis. The school is obligated to provide a 504 plan to all children who have a “medical disability,” a category that encompasses diabetes. The school should respond to your request promptly, typically within a few days. At that time, they will schedule you to meet with all teachers directly responsible for supervising your child, the school nurse, and the school’s on-site 504 coordinator.
- Develop a 504 proposal. Once you’ve been given a date for your meeting, you will need to develop a proposal for a 504 plan based on your child’s needs. Make sure to consider factors based on your child’s age, ability to self-manage his or her diabetes, the length of time he/she has been living with diabetes, the type of insulin therapy (pump vs. injections), and his/her emotional state given the events of recent weeks.
- Create an Individualized Healthcare Plan. Attached to the 504 plan is a separate document that you will create called an Individualized Healthcare Plan (IHP). The IHP spells out all information specific to your child’s medical care such as: dosing instructions, symptoms and treatment of hypoglycemia and hyperglycemia, administration of emergency glucagon, and phone numbers to reach you and your child’s physician. A healthcare plan is not a substitute for a 504 plan; if the school says you only need a healthcare plan, insist on a 504 plan as well.
- Take charge of the meeting. You know more than anyone else about your child’s diabetes care, so it makes sense that you should steer the meeting. Begin by thanking everyone for their support. It is a good idea to give a brief description of type 1 diabetes, and the issues that it can create on a daily basis for both students and teachers, and how it differs from type 2. Then, go through the 504 plan and IHP, taking questions as you go. If there are any disagreements regarding the 504 plan or concerns about the IHP, get those in disagreement to state the reason for their concern. Schools may well have experience in helping manage the care of a child with diabetes; they might also, however, not fully understand the demands of the disease, and underestimate the importance of some of your concerns. At the end of the meeting, you may request that all items which are agreed upon will be followed, stating that you will consider any points of disagreement and respond to them in a short period. Do not sign the 504 plan agreement unless you and the school are in full agreement.
- Follow up. For those items still under discussion, you can e-mail your inquiry to JDRF’s Online Diabetes Support Team for advice on how you might resolve these items with the rest of the 504 team. Then follow up with a letter to the school. If everything had been agreed to in the 504 meeting, send a letter thanking the school personnel for their support in implementing the 504 plan and IHP.
- Keep in regular contact with the school and your child’s instructors. In addition to helping you and your child manage life with diabetes, communication will usually prevent minor problems in the day-to-day care of your child from escalating into larger issues.
- Keep written records. Any time the school fails to implement the 504 plan or IHP, send a letter to the 504 coordinator explaining the circumstances, including the date, details of what happened, and the persons involved. Inform them of your concern about the incident and that you expect corrective action to be taken.
I wish you all the best. I know all these steps may seem a bit overwhelming, but the effort is well worth it in terms of your child’s well-being and your peace of mind. I wish you all the best, and remember, you are your child’s best advocate.