In the United States, schools that receive federal funds are mandated by Section 504 of the Rehabilitation Act of 1973 to deliver “free appropriate education” to children with disabilities, including T1D.
A 504 Plan is a legal (written) document specifying what “reasonable” modifications and accommodations the school must provide for a student with a disability (generally put into place for a student with a medical disability such as diabetes). Children with T1D are protected under this law.
The parent/school partnership
504 Plans are a way for you to hold the school accountable for meeting your child’s needs while in the school’s care. Remember, though, that this is a partnership you are building with your child’s school, and all parties have a role in the 504 process.
School’s role in the 504 process
It is the responsibility of the school and its personnel to have an understanding of T1D and be trained in its management and in the treatment of T1D emergencies. Knowledgeable, trained school personnel are essential to a student’s safety and physical well-being when dealing with immediate health risks of high or low blood-glucose level. Furthermore, an individualized 504 Plan should be developed and signed by the school, the parent or guardian, and the child’s T1D management care team. The 504 Plan should address the specific needs of the child and provide specific instructions related to the following:
- Times/places for blood-glucose monitoring, including accommodations for testing and treating
- Ensuring that staff members are trained in checking blood-glucose levels, recognizing and treating high and low blood-glucose symptoms, and administering both insulin and glucagon
- Allowing the student to eat whenever and wherever necessary, including eating lunch at an appropriate time and allowing enough time to finish eating
- Allowing extra trips to the bathroom or water fountain
- Ensuring the student’s full participation in all sports, extracurricular activities and field trips, with the necessary care and/or supervision
- Permitting extra absences for medical appointments and sick days when necessary, without penalty
All of the above create a supportive school environment, where school personnel understand the needs of students with diabetes and can respond appropriately in emergency situations, young people can manage their diabetes effectively throughout the school day and at school-sponsored activities. To help create and sustain such an environment, JDRF supports the use of Helping the Student with Diabetes Succeed: A Guide for School Personnel, produced by the National Diabetes Education Program (NDEP).
Parent’s role in the 504 process
In addition to submitting a formal request for a 504 Plan and a cover letter to the school, a parent or guardian is responsible for providing the school with the following:
- All materials and equipment necessary for T1D care tasks, including blood-glucose testing supplies and insulin administration (if needed).
- The parent is responsible for the maintenance of the equipment and must provide instructions to ensure the proper disposal of materials. A separate logbook should be kept at school for the staff or student to record blood-glucose-test results.
- Supplies to treat hypoglycemia, including a source of glucose and a glucagon emergency kit.
- Information about T1D.
- Emergency phone numbers for the parent and the student’s diabetes doctor (and staff) so that the school can contact these individuals with T1D-related questions or during emergencies.
- Information about the student’s meal and snack schedule. The parent should work with the school to coordinate this schedule with that of the rest of the class as much as possible. For young children, instructions should be given for when food is provided during school parties and other activities.
Making a plan is important, and you and your child deserve one that works for you. Try to approach the situation with a sense of assertiveness and diplomacy, being as supportive as possible to the school personnel that will be with your child, while looking out for both your needs as a concerned parent and your child’s needs. All of this and more, including state-specific requirements and a 504 FAQ, is covered in the JDRF School Advisory Toolkit.
Diabetes Medical Management Plan
It is also important to have a Diabetes Medical Management Plan (DMMP) for your child. The DMMP is prepared by your child’s personal diabetes healthcare team and outlines the medical orders for all aspects of your child’s routine and emergency diabetes care. The DMMP may be included as part your child’s 504 Plan. Some schools may use different terms for the DMMP, such as Diabetes Care Plan or Health Care Plan, but they are all designed to accomplish the same thing.
The DMMP should include information on the child’s date of diagnosis, contact information for parents and healthcare providers, as well as, specific medical orders for checking blood glucose and administering insulin. Trained school personnel will use the DMMP to develop your child’s Individualized Health Care Plan and the Emergency Care Plans for Hypoglycemia and Hyperglycemia.
Your child’s DMMP plan should be reviewed and updated each school year and any time there is a change to his or her prescribed care plan, level of self-management, or school circumstances.
More information on DMMPs and helping to ensure students with diabetes succeed in school can be found on the NIH website.
The Americans with Disabilities Act (ADA)
It is important to note that your child’s rights are also covered under the Americans with Disabilities Act (ADA). This law specifically prohibits all schools and day care centers—except those run by religious institutions—from discrimination against people with disabilities, including T1D. Its definition of disability is the same as in Section 504 (includes diabetes). The laws within this act declares a child with T1D has the right to go to school, play a sport, join a club, and do everything else that children without T1D do. It further states that public schools and other covered organizations must make “reasonable accommodations” for the child’s T1D.
Individual with Disabilities Education Act (IDEA) and Individualized Education Program (IEP)
Many students with T1D do not qualify for Individual with Disabilities Education Act (IDEA) protection, but it is important to know what it is in case you may qualify. This law covers children whose disability impairs their academic performance. It requires that such children be given a “free, appropriate public education.” Qualification depends on how T1D affects the student’s ability to learn.
If a student qualifies, he/she has the right to develop an Individualized Education Program (IEP) with his/her school. An IEP is similar to a Section 504 but includes specific measures to address the child’s academic performance and needed special education and other related services.
4 Steps to Implementing a School Plan
1. Ideally, you should contact the school before your child comes home from the hospital after diagnosis. Talk with the principal, your child’s teachers and coaches stating your fears, concerns and hopes for your child in general and while in school. This will help and provide the school with a deeper sense of what’s going on for you and your child.
2. Try to arrange a general meeting for school personnel where you and someone from your healthcare team present a brief presentation on T1D in school age children. It should be a brief, basic review of the essentials of what T1D is and how it is generally managed. The end should focus on outlining your child’s specific plan. Assure the school staff that you want to build a partnership between the child’s diabetes care team and her school team.
3. Before sending your child (back) to school, make sure that you have prepared a School Diabetes Emergency kit that stays in the school nurse’s or administrator’s office. Minimally, the kit should include:
- Extra insulin, about a 2–3 day supply in case of emergencies like hurricanes, earthquakes, etc.
- Extra insulin pen needles, syringes or pump infusion sets.
- Low blood-sugar treatments.
- Snacks, if your child’s management plan calls for them, like crackers, energy bars, etc.
- A glucagon kit, the use of which should be reviewed with school personnel.
- A brief outline of your child’s insulin regimen and meal plan.
- And anything else that you can think of that would be important in the caring of your child by someone else.
4. Replenish the kit from time to time. Replenishing the kit from time to time also gives you, the parent, an opportunity to have face-to-face time with school personnel, checking in with them to see how things are going.