Understanding Rights Key to Helping Children Manage Diabetes at School
Children with type 1 diabetes (T1D) still often find themselves left out of birthday celebrations or school trips, but that can end with more education of school staff, according to panelists who appeared at AADE16, the annual conference of the American Association of Diabetes Educators (AADE).
Anastasia Albanese-O’Neill, PhD, ARNP, CDE, clinical assistant professor at the University of Florida, and Sarah Butler, MS, RN, CDE, NCSN, director of Diabetes and Nursing Education for the National Association of School Nurses (NASN), shared how certified diabetes educators (CDEs) can advocate for children still facing discrimination at school, despite recent progress.
“Kids with diabetes can do well in the schools, but they need support,” Albanese-O’Neill said. “Discrimination is often based on fear and misunderstanding. It’s not based on facts.”Student rights are governed by both federal and state laws, as well as local policies. In recent years, advocates have worked to pass state laws to protect student rights. In a landmark case in 2013, the US Department of Justice found that Alabama had systematically violated students’ rights by transferring children out of neighborhood schools or keeping them off sports teams.1
Albanese-O’Neill shared how advocacy stopped 1 Florida district from clustering students in “diabetes schools,” which had school nurses. The change happened after a mother refused to transfer her son out of a neighborhood school and was told she had to come each day to administer insulin.2
Insisting that schools provide that support is critical because children spend so many hours there, Butler explained. “It’s really important that they are intensively managing their diabetes and have good glucose control,” during the school day. “Otherwise, you have 10 hours a day of not being in control,” he said.a young child being barred from having a classmate’s birthday cupcakes. “It took education to say she could have the cupcake,” Albanese-O’Neill said. The school had to be educated to understand that matching an insulin dose to the carbohydrate count could let the child join the party.
Albanese-O’Neill presented information from Crystal Crismond Woodward, director of the American Diabetes Association (ADA) Safe at School program, on the federal laws that protect students with diabetes. Diabetes is considered a disability under the American Disabilities Act, and other laws typically associated with learning disabilities also apply. Of note:
• 504 of the Rehabilitation Act of 1973 requires that students with T1D have a plan for how disease management will be accommodated. Some children who have other disabilities may have an Individualized Education Program, or IEP, which requires parent involvement.
• Any school that receives federal funding, including private and religious schools, is required to make sure that each student with T1D has a 504 plan. And that requirement does not end just because a student is doing well academically.
• Students are also covered by the Individuals with Disabilities in Education Act, which calls for a “free and appropriate” education regardless of disability status.
• Schools must make reasonable accommodations as long as they do not create an “undue burden,” a term that school leaders sometimes define too broadly.
• Elementary and secondary schools have a duty to identify children who need accommodations. Once a student with T1D enters college, the burden is on the student to inform the school.
Each student’s care is governed by a Diabetes Medical Management Plan, which a physician should update each year as students gain the ability to manage their own disease, such as using a continuous glucose monitor. (The ADA’s position is that students who have self-management capacity should be allowed to do so.)
Although the 504 plan and IEP spell out how the student will be accommodated in the classroom, the school nurse must annually update the Individualized Healthcare Plan. This spells out how care will be provided, including what happens if a student experiences hypoglycemia. Finally, an Emergency Care Plan spells out what occurs in a circumstance like a lockdown.
CDEs are often tapped to train school personnel now that most states require that unlicensed staff be trained to administer glucagon or assist students. These training sessions provide opportunities to educate school staff—including the principal—about what the law requires and how, with effort, schools can keep children with T1D from being excluded.
Parents can help by giving schools adequate notice if a student is going to take part in a sport or go on an overnight field trip. Not all states allow trained unlicensed school personnel to care for students, Butler said. Therefore, if a trip takes the class to one of these states, she said, parents and school officials must get clearance in advance for a staff member to be responsible for care.
Transitions from elementary to middle school, and later to high school, require added attention, Butler said. Back to school is a challenging time for parents and school staff alike, especially if a child is diagnosed during the summer break. Fortunately, the issue of rights for students with T1D is getting more attention. Butler pointed the group to recent position statements by AADE,3 the ADA,4 and the NASN.5
When problems arise, Butler said it’s essential for CDEs to insist on going back to the written plans. Doing so can expose planning gaps or areas where school personnel are not following doctor’s orders. “As CDEs, you probably hear about the obstacles,” Butler said, that lead to bad glucose control, absenteeism, and mental health issues. Many schools still lack trained staff, knowledge, supplies, and communication. It’s essential, she said, to “target the specific issue and solve it.”