Legal victory helps to keep children with diabetes stay safe at school
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How often do you expect to hear the statement, “The plaintiffs did not seek any monetary damages”?
The truth is, rarely.
But that was precisely the case when three sets of parents teamed up with the American Diabetes Association in a class action lawsuit against New York City’s Department of Education (DOE) in 2018. Their goal? Policy change.
Earlier this year, the federal court rendered a decision in the case that impacts not only the lives of the three students and families involved in the litigation, but all children with diabetes in New York City public schools, the nation’s largest school district.
Before the settlement, children with diabetes in the New York City public schools were sometimes excluded from field trips because a nurse was not available to provide diabetes care. Students with diabetes who rode the bus to school did so in the absence of an adult trained to administer glucagon in the event of severe hypoglycemia.
To address exclusion from field trips, the parents and the ADA challenged a DOE rule requiring nurses to attend field trips to provide diabetes care. When a nurse was not available — more than 20% of the time — either the parents were pressured to attend, the child with diabetes was left behind, or the field trip was canceled for the entire class. As to bus transportation, the plaintiffs challenged another DOE rule that instructed bus drivers and attendants to call 911 and wait for assistance if a child with diabetes experienced severe hypoglycemia. There was no DOE provision to train adults on board to administer glucagon in the event of an emergency.
In the settlement, the federal court ordered that a sufficient number of nurses must be hired by the DOE to provide coverage for all field trips. This means no more canceled field trips and no more children with diabetes left behind at school. With respect to bus transportation, the court ordered training for all bus drivers and bus attendants to recognize severe hypoglycemia and administer glucagon.
Ideally, other districts will emulate the new New York City public schools process and require that all bus drivers and attendants be trained to administer glucagon in an emergency, saving precious minutes waiting for emergency services in urban and rural settings. This is particularly feasible with some of the newly available glucagon formulations.
This settlement is the latest in a long string of victories by the ADA, disability advocates and families in a state-by-state effort to protect the rights of children with diabetes at school. In many states, litigation was never required. Instead, advocates worked together with legislators or experts in the regulatory space to pass state laws and guidelines consistent with federal civil rights law to ensure students with diabetes receive the care they need to be safe and participate in school activities just like other children. To do this, children with diabetes need the following support at school:
- trained staff to monitor glucose and administer insulin and glucagon;
- trained staff to provide diabetes care during field trips, extracurricular events and all school sponsored activities; and
- permission for capable students to self-manage their diabetes anywhere at anytime.
More work to do
Health care professionals who care for children with diabetes can help keep children with diabetes safe at school.
At the individual level: Actively inquire about diabetes at school during clinic and diabetes education visits. In clinic, parents and children might not raise concerns about diabetes at school. At each visit, ask about missed school days due to diabetes, the child’s academic progress and participation in extracurricular activities. A significant number of absences, low grades or limited activities may be a diabetes-related red flag.
At the clinic level: Create processes to make sure every child has a Diabetes Medical Management Plan (DMMP) or “doctor’s orders” at the beginning of the school year. Update the DMMP whenever the child’s diabetes regimen, level of self-management or school circumstances change. The DMMP should lay out the specific diabetes needs of the child at school and include guidance, such as how often glucose should be monitored, the amount and type of insulin to be given, the treatment plan for hypoglycemia, and provisions for use of diabetes technology. Many children returned to school after the pandemic with new connected technology, new glucagon formulations and connected insulin pens. An updated DMMP is available from the ADA that includes these new technologies and medications and can be found at diabetes.org/dmmp.
Health care practitioners should inform families about the student’s right to a 504 plan. A 504 plan is developed in partnership with the school counselor and the student and family and clarifies the actions the school will take to make sure the student with diabetes is treated fairly, has the same access to education as other children, and is medically safe. All children with diabetes qualify for a 504 plan based on the diagnosis of diabetes; eligibility is not related to the student’s academic performance.
At the regional level: Health care professionals can help educate school nurses and other school staff who care for children with diabetes by contributing to in-services and hands-on technology training. Make sure school nurses know how to reach your clinic during school hours. In addition, share online resources available at no cost:
- ADA School Guide: www.diabetes.org/sites/default/files/2020-06/SchoolguidepdfMay2020.pdf
- ADA School Training Resources: www.diabetes.org/tools-support/know-your-rights/safe-at-school-state-laws/training-resources-school-staff
- Association of Diabetes Care & Education Specialists Technology Training for school nurses and staff: www.danatech.org
- CDC: www.cdc.gov/diabetes/library/features/managing-diabetes-at-school.html
- JDRF School Resources: www.jdrf.org/t1d-resources/living-with-t1d/school/
At the state level: Encourage your state’s department of health to maintain updated guidelines for diabetes care in the school setting. An excellent example can be found in the state of Colorado at www.coloradokidswithdiabetes.org.
Finally, we can lend our voices as advocates.
A confession
Many years ago, before I became a diabetes care and education specialist and health care practitioner, I was the mother of a very young child with type 1 diabetes. One afternoon, I picked her up early from school for a clinic appointment. When I arrived at school, I was directed to the playground, where her class was celebrating another child’s birthday. I scanned the crowd of children but didn’t see my daughter. Eventually I spotted her standing alone by the swings, looking longingly at the other children who were happily eating cupcakes. The teacher, who was a kind and talented educator, made her way to me quickly. “I’m so sorry,” she said. “We just didn’t know what to do. People with diabetes shouldn’t eat sugar, right?”
It is a small thing, being excluded from having a cupcake at a party. But for a child with diabetes, it is not simply about missing out on the cupcake, but the associated isolation and stigma of being left out. This story has a happy ending. With a little education, the teacher in question became one of my daughter’s most powerful diabetes advocates in the school setting.
And this is often the case. A little education can be enough to ensure that children with diabetes can fully and safely participate at school. At other times, as in the case of the New York City public schools, litigation is required. Health care practitioners can play a key role in advising families and children with diabetes of their rights, providing medical orders (a DMMP) for use at school, educating school nurses and other staff, and advocating for appropriate legislative and regulatory support. Together, we can ensure that children with diabetes are safe at school and can fully participate in their education.
For more information:
Anastasia Albanese-O’Neill, PhD, CPNP-BC, CDCES, is a longtime diabetes advocate, a faculty member in the University of Florida College of Nursing, and a staff member at JDRF. She is past co-chair of the American Diabetes Association’s Safe at School Working Group. She can be reached at aalbanese@bellsouth.net.
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