The bottom line is clear: children with diabetes spend an enormous amount of time in school and must be able to achieve the same level of diabetes management in school that they do during the rest of the day. To do this, they need access to the tools for diabetes management (blood glucose testing equipment; insulin delivery systems; oral, fast-acting carbohydrate and glucagons; sufficient time to adhere to their nutrition plan) and to school personnel who are knowledgeable about diabetes and able to assist when needed.
In many schools and day care centers, children with diabetes are fully supported with regards to diabetes management. Unfortunately, in others, good diabetes management is obstructed. In these settings, school personnel seem convinced that the easiest (and legally safest) way to respond to children with diabetes is to just say “no.” Families are thus told, for example, that school personnel cannot help younger children with blood glucose testing or insulin administration, that older children cannot test their own blood glucose levels in their classroom, that nonmedical personnel cannot administer glucagon, or that children with diabetes cannot participate in sports or other extracurricular activities.
Schools need to be educated about diabetes so that they understand how easily they can facilitate good diabetes care for their students with diabetes. For some schools, providing information about diabetes is enough. Other schools are not so easily convinced that they can or should allow diabetes management at school. That is why it is important for families and their health care teams to understand children’s legal rights in school and for schools to understand and meet their legal responsibilities.
Federal Protection for Students With Diabetes
Three federal laws provide protection to children with diabetes at school: Section 504 of the Rehabilitation Act of 1973 (Section 504); the Americans with Disabilities Act; and the Individuals with Disabilities Education Act (IDEA). Depending on a child’s medical condition and the type of school he or she attends, one or more of these laws should apply.
Section 504 is a civil rights law that prohibits recipients of federal funds from discriminating against people on the basis of disability. It applies to all public schools and to any private schools that receive federal money. Schools generally accept that children with diabetes are covered by Section 504, and there are no reported cases of a child with diabetes being found ineligible for protection under this law. Section 504 provides protection even for children who are not having any academic difficulties at school.
Section 504 requires that students with disabilities be afforded an equal opportunity to participate in academic, nonacademic, and extracurricular activities. Schools must provide the aids and services needed to make sure that children with diabetes are medically safe at school and have the same access to educational opportunity as do other children.
Americans With Disabilities Act
The Americans with Disabilities Act is another civil rights law that protects students with disabilities. As with Section 504, children with diabetes have been found to be covered by this law. In addition to public school students, this law protects all students in private schools, unless the school is run by a religious entity. The obligations of public schools to children with disabilities are generally the same as under Section 504.
The IDEA is the federal law that funds special education services for children with disabilities. In order to qualify under IDEA, a student’s diabetes must impair his or her ability to learn so that the student requires special education. This may occur if a child frequently experiences hypoglycemia or hyperglycemia at school that significantly affects the student’s ability to concentrate. Some children with diabetes have been found to be covered by IDEA; others have not. The American Diabetes Association (Association) and Disability Rights Education and Defense Fund (DREDF) have developed a document that thoroughly explains IDEA as it applies to children with diabetes. This document can be accessed at http://www.diabetes.org:80/main/community/advocacy/idea.jsp.
The Importance of Written Plans
For all schools, the best first step is to make sure that the student with diabetes, the child’s family, school staff, and the child’s health care team know what is expected of them. These expectations should be committed to writing in the form of two signed documents: 1) a health care plan that explains what medical procedures should take place at school; and 2) a 504 Plan, Individualized Education Program (IEP), or other care plan that explains in what ways the usual school routine needs to be altered for that particular student. These documents should be finalized before the school year begins or as soon as possible after diagnosis. They should be updated as needed whenever the student’s diabetes management needs at school change.
Health Care Plan
A health care plan is a document developed by the family and the child’s health care team. The health care plan sets out the basic medical needs that the child has at school and how those needs will be met. The term “health care plan” is not a term of art or a term found in a particular federal or state law. The document could be called a “physician’s order,” a “medical plan,” or any of a number of other names. The plan should include specific information for that child with regard to monitoring of blood glucose; insulin; meals and snacks; treatment of hypoglycemia and hyperglycemia; and exercise and sports. A sample plan is included in the American Diabetes Association’s position statement on Care of Children with Diabetes in the School and Day Care Setting1 or can be accessed at http://www.diabetes.org:80/main/community/advocacy/504plan.jsp.
In addition to the medical issues covered in a health care plan, there are other modifications that students with diabetes need. For example, children with diabetes must be permitted to eat whenever and wherever they need to in order to avoid hypoglycemia, even if other children are not allowed to eat (i.e., in class, on the school bus, or during phyical education). They need to be able to safely participate in athletics and other extracurricular activities and to go on field trips. They may need academic accommodations for when they experience hypoglycemia or hyperglycemia while taking a test. There is a long list of accommodations that individual students might need, but because diabetes affects each student differently, such a list must be tailored to the needs of individual students.
Ideally, a written plan is developed jointly by the child’s family and school officials, with advice from the child’s health care team as needed. The plan can be developed pursuant to Section 504, in which case it is usually called a 504 Plan, or pursuant to IDEA, in which case it is referred to as an IEP. The plan also can be done informally, that is, not pursuant to any law. A major advantage of putting this information into a 504 Plan or an IEP as opposed to an unofficial document is that the family has access to dispute resolution procedures should any problems arise. The importance of these legal rights cannot be overemphasized.
The Association and DREDF have jointly developed a sample 504 Plan that contains the many kinds of accommodations that a student with diabetes may need. This sample plan is meant to be broad, allowing families and school personnel to determine which of the listed accommodations is applicable to a specific child. The sample 504 Plan may be found at http://www.diabetes.org:80/main/community/advocacy/504plan.jsp.
Deciding How to Proceed
Parents are sometimes reluctant to invoke the protections of these federal laws for fear of antagonizing school officials or because they do not want their child to be labeled as having a disability. However, when a school is reluctant to enable students to manage their diabetes at school, it is important to take advantage of the legal protections these laws offer. Conversely, schools that approach assisting students with diabetes in a more positive way will welcome written plans so that everyone understands what is supposed to happen and can act in the best interests of these students.
Francine Ratner Kaufman, MD, is a professor of pediatrics at the Keck School of Medicine at the University of Southern California in Los Angeles and head of the Division of Endocrinology & Metabolism at Childrens Hospital Los Angeles. She is president-elect of the American Diabetes Association.