Diabetes is one of the most common chronic illnesses in youth. Approximately 5% of all new diabetes cases are Type 1, with most of these cases affecting children and adolescents. In fact, more than 18,000 people under age 20 are diagnosed with Type 1 annually. Also of concern is the growing number of new cases of Type 2 diabetes in youth — over 5,000 diagnoses annually in the U.S.
As we get ready to head into another school year, it is important that as the parent or guardian of a child with diabetes, you and your child’s school have all the information necessary to ensure your child has a successful school year. While about one in every 300 to 350 children has diabetes, that may not be the case in your child’s school.
Section 504 of the Rehabilitation Act of 1973, or Section 504, is a federal civil rights law put in place to prevent discrimination of an individual with a disability. It reads, “No otherwise qualified individual with a disability in the United States…shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.”
Children and adolescents with diabetes are covered under Section 504. Diabetes is considered a disability, defined as a physical or mental impairment that substantially limits one or more major life activities. With diabetes, the inability of the body to keep blood glucose levels in the normal range qualifies the condition as a disability. Other examples covered under Section 504 include epilepsy, asthma, autism spectrum disorders, and attention deficit hyperactivity disorder (ADHD). Schools — particularly those that receive federal funding — are required to provide reasonable accommodations to assure your child’s day-to-day diabetes needs are met.
Have a plan in place
To make sure your child’s rights are protected, his/her diabetes-related needs are met and you and the school system are on the same page, your child should have a Section 504 Plan. Your school district should have written procedures regarding the services it provides under Section 504. Ask about these written procedures to familiarize yourself with how your child’s school interprets its responsibilities. Your child’s Section 504 Plan helps ensure your child’s needs are communicated in the form of a written plan to the school staff and parents/guardians, as well as the child him/herself. Generally, this plan of care should include:
• Who is trained on and will supervise the child’s diabetes care needs at school
• Strategies for training temporary personnel (i.e., substitute teachers)
• Familiarity with and location of diabetes care supplies in the school setting
• Timing and supplies for administering medication
• Schedule and location of blood glucose monitoring supplies
• Plan for routine meals and snacks
• Availability of restroom and water fountain breaks
• Any accommodations needed for exercise, physical activity and sports
• Support for necessary excused absences for diabetes care appointments
• Emergency plan (including sick-day management and school lock-down procedures)
• Updated contact information for relatives, friends and health-care providers.
Once the school is notified that a student has diabetes, appropriate care should be taken to ensure staff members are trained to check blood glucose levels as well as administer insulin and glucagon. School personnel such as classroom teachers, physical education teachers, coaches, and bus drivers/monitors who have regular contact with the child should be trained to recognize when blood glucose levels are too high or too low, along with the appropriate follow-up treatment. Familiarity with this information will allow school personnel to help meet a child’s needs and help that child feel his/her best and perform better in school. Students with diabetes should be encouraged to participate in all physical activities, sports events, and field trips. Trained adults should be present in these settings and be aware of the individual’s diabetes plan and how to respond should diabetes-specific needs arise. It is important to note that if you are unable to attend such events your child can not be excluded from participating.
Diabetes medical management plan
One of the key components of the Section 504 Plan is the Diabetes Medical Management Plan (DMMP). This plan is designed by you (the parent/guardian) and incorporates medical orders from your diabetes care team, signed by your child’s diabetes care provider (pediatric endocrinologist or pediatric nurse practitioner). The DMMP outlines your child’s type of diabetes and date of diagnosis, as well as a written expectation of what is needed specific to your child’s diabetes care. Other items likely to be included in the DMMP:
Contact information. Legible, accurate contact information is very important should the school need to contact a parent/guardian, the child’s diabetes care provider, or any other key person. Be sure to provide updated home, work, and cell phone numbers so school personnel can reach the appropriate contact. Make sure each number has a voicemail option or an alert in place to assure the person can be reached.
Blood glucose monitoring details. The school staff will receive guidelines on how often to monitor your child’s blood glucose level — on a routine basis, each time the child complains of symptoms of hypo- or hyperglycemia, and/or any time the child feels ill. The brand of blood glucose meter, test strips, and lancets, along with blood glucose target ranges, should be included in the plan. It is essential school personnel know that a fingerstick always should be performed if hypoglycemia is suspected. If your child is using a continuous glucose monitor (CGM), additional training should be given according to the type of CGM, with emphasis on the purpose of the alarms and actions to be taken, such as confirming blood glucose with the meter before taking action on a sensor blood glucose level.
Treatment for hypoglycemia. A detailed plan of treatment for hypoglycemia is essential. Provide details about your child’s usual symptoms of hypoglycemia as well as the likelihood for the blood glucose to become too low without the child feeling symptoms. Be sure your child has a source of 15–20 grams of pure glucose (3–5 glucose tablets or an individual 15-gram tube of glucose gel) easily available. In addition, provide other options for 15–20-gram sources of carbohydrate that can be used to treat hypoglycemia, such as 1/2 to 1/3 cup of fruit juice. The staff should be aware your child’s blood glucose should be rechecked approximately 15 minutes later to determine whether additional treatment is necessary. Designated school staff should be trained in the use of Glucagon for severe hypoglycemia and to call 911 and the parent/guardian. The diabetes care provider should be notified as well.
Treatment for hyperglycemia. Likewise, school personnel should be informed about how to monitor hyperglycemia. Again, provide details about the symptoms your child experiences when his/her blood glucose is too high and specific instruction regarding when to check (urine or blood) for ketones (when the body breaks down fat for energy). Trained school staff should understand the critical significance and management of the presence of ketones in urine. Clear instructions on its management with extra doses of insulin should be available if needed.
Diabetes medications. Children with Type 1 diabetes always will require insulin therapy. Your child’s plan should include specifics about the type of insulin, how often it will be taken and the device (syringe, pen, or pump) used to administer insulin. Most plans include the amount to be added to correct a blood glucose level that is too high. The plan should outline when, who, and any approval needed to adjust insulin doses. It is critical that insulin doses are spaced apart enough to avoid “stacking,” which can result in too much insulin and cause hypoglycemia. If your child is treated with a diabetes medicine that is not insulin, the plan should be specific on the purpose of the medicine and state how often, what time or times of day, whether before or after a meal and the type (i.e., oral pill).
Meal plan. School staff should have an awareness of the effect carbohydrate has on blood glucose and the purpose of estimating carbohydrate content in a particular food. Many school menus have nutrition information available. The staff should not deny your child a food just because he has diabetes. Instructions for when food is provided to the class such as a holiday event is essential so your child may participate, his carbohydrate counted and any necessary insulin administered.
Physical activity and sports. The plan should emphasize the availability of a source of glucose when your child is participating in physical activity and sports. Details regarding any additional food intake needed depending on your child’s blood glucose level should be included, as well as effects of the intensity and length of time he/she exercises. It should be clear that your child should not exercise if his/her blood glucose is high and he/she has moderate-to-large ketones in the urine. In contrast, if his/her blood glucose is high, no ketones are present and he/she feels fine, he/she should be able to exercise.
Other information. Other helpful information includes what (if any) help a child might provide in his/her diabetes self-care. If your child is capable of doing so, he/she can be allowed to perform the diabetes care activities associated with monitoring blood glucose, taking insulin and counting carbohydrate accurately; however, he/she always should be closely supervised by trained staff.
Finally, the school system will require signatures from you (the parent/guardian) as well as a sign-off on the medical orders by your child’s diabetes care provider.
Peace of mind
Your child has the right to attend school with attention paid to successful diabetes management. The Section 504 Plan is important to you, the school, and your child. Talk with the school and your child’s diabetes care provider ahead of time so that the Section 504 Plan is ready. This way his/her diabetes care responsibilities can be understood by everyone involved. While parents can’t help but worry about their children, having a plan in place can help lessen that worry and keep your child safe and healthy at school.
“I wanted to be sure my child had access to everything needed for diabetes at school,” said Mary, mother of a first grader with Type 1 diabetes. “The Section 504 Plan provided a safer school environment.”