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Laws protect children with diabetes at school
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Imagine that you have just learned that your child has been diagnosed with type 1 diabetes. You have met with the diabetes care team and learned how to check blood glucose, administer insulin injections, and identify and treat hypoglycemia. You have reconciled yourself to the fact that your child has a chronic disease that requires intensive management. You have been told there is no cure.
After an emotional and disruptive week, you are looking forward to getting your child settled back into his routine at home and with his friends at school. However, when you arrive at school to meet with the principal to prepare for your child’s first day back, you are told that he can no longer attend his neighborhood school because of his diagnosis, inability to self-manage diabetes, and the lack of a school nurse or other trained staff member to help him with his care. He must instead be bused to a “diabetes school” with a full-time school nurse, but with unfamiliar teachers and a classroom full of children he doesn’t know. While this may seem far-fetched, it was standard procedure in a north Florida school district until advocates very recently intervened and championed legislation to prohibit this practice.
Discrimination against students with diabetes
Although public awareness of diabetes has grown and stigma around the disease has diminished, children with diabetes often still face barriers to full participation in their education based on their diagnosis. Children with diabetes face day-to-day challenges in the school setting, including some that are considered discrimination:
- A child is not allowed to go on field trips unless accompanied by a parent, even if this means the parent must miss work to attend.
- The child is forbidden to check blood glucose in the classroom or on the playing field, but must instead go to the clinic where supplies are kept.
- The parents are told the child doesn’t qualify for a Section 504 plan.
- A child isn’t permitted to bring glucose tabs or a snack to treat low blood glucose during a standardized test.
- No one at the school is trained or available to administer insulin and glucagon (on time or at all).
These are very real challenges that can interfere with a student’s ability to safely and fully participate in academic and extracurricular activities. The American Diabetes Association recommends parents take a step-wise approach to these challenges, starting with education and negotiation. The goal is to resolve problems through education, which is often possible because discrimination is typically based on fear of the unknown or misinformation about diabetes and lack of understanding about relevant laws. With support from the diabetes care team, most parents find that they can negotiate solutions in the school setting by providing education and resources to school faculty and staff. Unfortunately, this is not always the case. If unsuccessful, resolution may require litigation or legislative action.
Anastasia Albanese-O’Neill
Protections for students with diabetes
To successfully negotiate on behalf of their child, parents must first be aware of the federal and state laws that provide legal protections and require schools to provide certain services and modifications for children with diabetes. These protections are provided by federal laws, including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973 (Section 504), and the Individuals with Disabilities Education Act (IDEA). Both the ADA and Section 504 are civil rights laws that prohibit discrimination on the basis of a disability. Section 504 applies to any public, private or religious school or program that receives federal funding. The ADA applies to all public and private schools (except those operated by a religious entity) and also covers places of public accommodation, such as daycare centers and camps — regardless of whether federal funds are received. IDEA is a law that provides for the special education and related services needed for a child with a disability to access an education.
Diabetes is considered a disability under these laws because diabetes creates a “substantial limitation” on the body’s endocrine function. The word “disability” should not be considered a label, but rather understood as a legal tool that enables students with diabetes to secure the necessary health services and academic modifications they need to safely and fully participate in their education. The protections afforded by the ADA and Section 504 apply not only during the school day, but also during all school-sponsored events, including field trips, extracurricular activities and school transportation. Sometimes these laws are misunderstood or confused with other laws that require action only when the child is having academic difficulties (eg, IDEA). To be clear, protections under the ADA and Section 504 are not limited to disabilities that affect learning or students who are having academic difficulties. Rather, these laws allow parents to take a proactive approach to ensure that their child has equal opportunity to participate safely and fully in both academic and nonacademic school-sponsored activities.
Safe at School campaign
To ensure that all students benefit from these protections, the American Diabetes Association launched the Safe at School campaign, which has three guiding principles:
- Basic diabetes training for all staff members
All school workers should have a basic knowledge of diabetes and know whom to contact for assistance. It is critical that this basic knowledge is provided not only to the school nurse and the child’s classroom teacher, but also to bus drivers, front office personnel, lunchroom staffers and anyone who might encounter the child. A small amount of education goes a long way in preventing emergencies.
- Shared responsibilities for care, led by the school nurse
While the school nurse is the primary provider of school care, the reality is that not every school has a nurse on site. Young children often cannot manage their own diabetes, and older children may require supervision and assistance. Other school personnel must be trained to perform diabetes care tasks when the nurse is not available. These tasks include blood glucose monitoring, insulin and glucagon administration, and recognition and treatment of highs and lows.
- Students should be permitted to self-manage their diabetes at school or at school-related activities.
To effectively manage diabetes, students need access to their supplies, whether they are in the classroom or on the football field. If they are participating in a school-related activity, students who have the maturity and requisite skills to self-manage their diabetes should be able to do so wherever they are, whenever they need to do so.
The Association’s Safe at School campaign’s principles have been endorsed by the Academy of Nutrition and Dietetics, American Academy of Pediatrics, American Association of Clinical Endocrinologists, American Association of Diabetes Educators, Children with Diabetes, Disability Rights Education Defense Fund, JDRF, Pediatric Endocrinology Nursing Society, Pediatric Endocrine Society, and the Endocrine Society. More information can be found online at www.diabetes.org/safeatschool.
Recommendations, resources for the diabetes care team
During busy clinical visits, while the care team is focused on glycemic control and complications screenings, it is also critical to assess for any diabetes-related challenges in the school setting. Parents of children with diabetes may be unfamiliar with their child’s rights or the protections available to them under the law. This gap in knowledge can be filled by members of the diabetes care team, who can provide the requisite knowledge and resources such that parents are able to advocate successfully on behalf of their child. As outlined in “Diabetes Care in the School Setting: A Position Statement of the American Diabetes Association” (October 2015), the diabetes care team should provide a Diabetes Medical Management Plan (DMMP) before the beginning of every school year. They should encourage parents to ask for a Section 504 plan in writing as soon as they enroll their child in the school or immediately after diagnosis. It is important to have the plan in place in advance of any challenges the child faces, and the parent or guardian and child, if desired, should actively participate in the 504 process so that the plan is individualized. A comprehensive Section 504 plan for a child with diabetes might include the following:
- Training for all school staff members who will interact with the child to recognize low blood glucose and respond appropriately;
- Trained staff members to assist with blood glucose monitoring and insulin and glucagon administration as prescribed by the DMMP;
- Allowing capable students to keep their supplies with them and self-manage anywhere, anytime;
- Full and safe participation in all activities with necessary assistance or supervision for diabetes care;
- Access to the bathroom and drinking fountain at all times; and
- Alternate arrangements for missed class time, assignments and exams due to medical visits, hyperglycemia, hypoglycemia or diabetes-related illness.
If parents encounter resistance to putting a Section 504 plan in place, they should first address the school’s concerns through education and negotiation. The diabetes care team should be ready to assist the family with this process. There are a number of resources available online, including a sample DMMP (www.diabetes.org/DMMP), a sample 504 Plan (www.diabetes.org/504plan) and a series of free diabetes care task training modules for school personnel (www.diabetes.org/schooltraining). If this effort is unsuccessful, families should be encouraged to contact 1-800-DIABETES to obtain assistance from a legal advocate and a volunteer network of lawyers, health care providers and advocates.
Children with diabetes spend a significant amount of their time in school and participating in before and after school activities. Unfortunately, they can’t leave diabetes at home. The good news is that it is possible for a child with diabetes to be medically safe at school and fully participate in both academic and after school-related activities, but this requires proper education and training, as well as a partnership between the child, his parents, the diabetes care team and the school staff.
- References:
- Jackson CC, et al. Diabetes Care. 2015;doi:10.2337/dc15-1418.
- National Institutes of Health: Helping the Student with Diabetes Succeed: A Guide for School Personnel. Bethesda, MD, National Diabetes Education Program; (NIH publication no. 10-5217, revised September 2010).
- For more information:
- Anastasia Albanese-O’Neill, PhD, ARNP, CDE, is an assistant professor at the University of Florida, College of Nursing in Gainesville. She can be reached at aalbanese@ufl.edu.
- Crystal C. Jackson is director of the American Diabetes Association Safe at School campaign.
Disclosure: Albanese-O’Neill and Jackson report no relevant financial disclosures.