Communication, careful planning ensure students with diabetes can succeed at school

Type 1 diabetes remains one of the most common chronic diseases of childhood. According to the ongoing SEARCH for Diabetes in Youth study, about 200,000 U.S. children and adolescents have type 1 diabetes. By 2050, that number is expected to rise to 600,000, according to JDRF.

The numbers mean more students with the disease will be attending more schools, where proper management is critical but confusion about the law and what children are entitled to has led to situations that sometimes result in discrimination or put children with diabetes at risk, experts told Endocrine Today. When a child and his or her family are coping with a new type 1 diagnosis, members of the care team ranging from pediatric endocrinologists to certified diabetes educators and primary care providers often find themselves preparing families for battles on several fronts.

“In the school setting, to manage type 1 diabetes well and prevent acute and long-term complications, planning, training and ongoing communication are required,” Anastasia Albanese- O’Neill, PhD, ARNP, CDE, assistant clinical professor in the division of pediatric endocrinology at the University of Florida, told Endocrine Today. “You’re monitoring glucose levels, taking insulin as prescribed, counting carbohydrates, learning to recognize low blood glucose. There are a lot of elements. The broader challenge is that, often if a kid is diagnosed in the middle of the school year, it’s an abrupt change in that child’s life. They may be the only child in their school with diabetes, they have to learn a new routine and, in some cases, the school nurse hasn’t cared for a child with diabetes for many years, if at all. There are a whole series of challenges that make training and processes essential.”

With children spending at least 30 hours per week in school, the risk for diabetes complications, such as hypoglycemia and hyperglycemia, can be great if the disease is not properly managed in this setting, said Christine Twining, MD, FACE, medical director at Maine Medical Partners in Scarborough. Poor diabetes control in school, experts said, can also disrupt a child’s ability to learn and participate in the day, adversely affecting school performance and negatively influencing psychosocial health and relationships with peers.

“The biggest balance for elementary-aged children is in allowing them to fully participate [in school] while keeping them safe,” Twining told Endocrine Today. “Some of the kids have had diabetes for many years at that point, and some are just being diagnosed. That presents a big challenge for the school personnel. They’re not dealing with a uniform condition. It’s different for each individual child, not only how the diabetes behaves, but where [the child is] in their own personal and family understanding of it. That’s a big issue.”

When a child with type 1 diabetes begins the school year, typically a school nurse, school administrators and the child’s teachers are informed of the child’s status, and provisions are put in place for administering insulin and glucagon, when needed, and monitoring glucose via an individualized health plan. But countless, small changes in a day — from the weather, to a lengthy standardized test or a class birthday party with cupcakes — will require tweaks to a student’s insulin needs and a careful eye to look out for blood glucose lows and highs, said Joanne Rinker, MS, RD, CDE, LDN, FAADE, director of practice and content development for the American Association of Diabetes Educators.

“The schedule [at school] is never the same, so it’s hard to have consistency for the day,” Rinker told Endocrine Today. “Even the difference between a rainy day vs. a sunny day can change the amount of activity the child has at school. The variables are unbelievable.”

Facing barriers

Parents and health care providers caring for a child with type 1 diabetes have access to a wealth of information that was not available as recently as a decade ago. Both the American Diabetes Association and the AADE have published position statements on the care of children with diabetes in the school setting; the ADA offers a comprehensive Safe at School program, and JDRF offers a School Advisory Toolkit for providers and families. Joslin Diabetes Center offers a program designed specifically for school nurses.

But despite living in the information age, common problems related to diabetes management in school persist, Crystal Woodward, director of the ADA’s Safe at School program, told Endocrine Today.

“The types of problems we are seeing today have changed with new technology and best practices,” said Woodward, whose adult daughter was diagnosed with type 1 diabetes at age 1 year. “However, there are still parents who report their child’s school has no trained school staff to give insulin and provide other care when a school nurse is not available.”

Even in schools with a full-time school nurse, there are sometimes challenges related to insulin administration and the provision of diabetes care, she said.

“School nurses have competing priorities,” Woodward said. “They don’t usually go on field trips, and they don’t stay on site for before-school or after-school activities. They can’t always be there. The Association recommends training a small group of school staff members to provide all aspects of diabetes care, including administering insulin, when a school nurse is not available. But the problems we sometimes encounter are legal barriers in state laws or lack of knowledge to implement a best practice model. Training staff is key.”

In schools that do train nonclinical staff in insulin and glucagon administration, there is sometimes hesitation to take on the duties, Rinker said.

“I have gone into schools and done training for how to use a glucagon kit for people who have children with diabetes in their schools and don’t have a school nurse, and it worries them,” she said. “They have a high fear level with that child in their classroom. This is out of their realm of what they are used to focusing on. It’s extremely hard for a teacher.”

Rapidly changing diabetes technology, including blood glucose meters, insulin pumps, continuous glucose monitors and, in some newer cases, artificial pancreas technology, also presents a challenge to staff, who may not want to take on the management of such devices, Woodward said.

“There is fear of the unknown because diabetes technology is so rapidly changing, and the unknown is the new technology,” she said. “We do receive pushback from the school nurse community. They sometimes feel the technology is adding to their burden when, actually, new technology leads to improved diabetes care.”

For many of these situations, misunderstandings can be corrected through education, said Craig Taplin, MD, associate professor of pediatrics at the University of Washington and Seattle Children’s Hospital.

“There are some otherwise well-intentioned educational staff in schools who may be fearful or intimidated by how to manage type 1 diabetes,” Taplin told Endocrine Today. “Those are barriers that can be overcome with some simple education. Even though type 1 diabetes is an increasingly common condition or diagnosis, the reality is there is still a knowledge gap.”

He said school staff also sometimes confuse type 1 diabetes, an autoimmune condition, with type 2 diabetes, which is not an autoimmune — and many times not an insulin-dependent — disease.

“When schools hear the word ‘diabetes,’ they’re often thinking about type 2 diabetes, rather than type 1,” Taplin said. “That creates some misunderstandings about management, which is frustrating to parents and students alike.”

Creating a care plan

In its Managing Diabetes at School Playbook, the CDC recommends parents meet with their child’s health care team to develop a Diabetes Medical Management Plan, or DMMP, before the school year begins. The DMMP, which will be filed with the child’s school, provides written permission to administer treatment and includes a child’s specific needs for diabetes management:

1. target blood glucose range and whether the child needs help checking his or her blood glucose;
2. a child’s specific hypoglycemia symptoms and recommendations on how to treat them;
3. insulin and other medications used; and
4. management of physical activities.

“The first key for the health care provider is to provide the child and parent with a diabetes medical management plan,” said Albanese-O’Neill, who is a member of the Endocrine Today Editorial Board. “Everything that happens in that school will be based off those orders. What are the child’s insulin doses? How do we treat lows? When and how should ketones be monitored? When should the child have snacks? Providers should encourage their patient families not to wait to obtain a DMMP until just before school begins. If [insulin] doses change over the summer, you can always provide updated orders.”

Planning does not end with a DMMP, Albanese-O’Neill said. A family will next want to work with the school and care team to develop a 504 plan. This document, named for Section 504 of the Rehabilitation Act of 1973, is a legally binding agreement between a family and a school district that outlines what a student needs in order to access all school activities while having his or her diabetes needs met. It can include important additional directives, such as a need for a student to charge a cellphone during school because it is linked to the CGM device, or a need to eat a snack 30 minutes before taking an exam.

“The plan at school is a collaborative effort,” Rinker said. “It’s done with the provider, the diabetes educator, the parents and the child. The beauty of that is that they can all work together to figure out what are the important things that we need to include in this plan. All of that is housed at the school, so the school knows: When do we call the doctor, when do we call the parent, and when do we involve just the professional at the school who is assigned to this student with diabetes? All of those guidelines are in place with a school plan.”

When developing the plan, Rinker said the conversation should focus on where the child is most at risk for hypoglycemia and hyperglycemia, how to best prevent getting to that point, and the best course of action if the child does experience an emergency related to their diabetes.

“It does help because the expectations are spelled out and ready to go,” she said.

Legal rights

Federal laws protect the rights of children with disabilities — including children with type 1 diabetes. Under Section 504 of the Rehabilitation Act of 1973, children with disabilities have a legal right to fully participate in school in a safe and healthy environment. Children with type 1 diabetes attending public and private schools, preschools and day care centers (except those run by religious institutions) are also protected under the Americans with Disabilities Act and the Individuals with Disabilities Education Act.

State laws regarding the administration of insulin and glucagon by school staff members, however, vary from state to state. California, for example, specifically allows trained, nonclinical school personnel to administer both insulin and glucagon in accordance with the written statements of a student’s treating physician. In contrast, Mississippi has no state law regarding administration of insulin in schools, but general medication administration in schools is mentioned as a task for licensed nurses only, according to a state-by-state database compiled by the ADA.

Regardless of state laws, experts said, federal law requires schools to provide needed care to the student with diabetes so the student may safely and fully participate in all school-sponsored activities.

Taplin recalled a recent incident with one of his young patients with type 1 diabetes, who was accepted into a private school to attend kindergarten in the Seattle area. Shortly before the school year began, he said, school officials informed the child’s parents that no school staff member could be trained to help their son manage his diabetes. The parents took turns spending full days at the child’s school, and later paid a nanny to help their son manage his blood glucose checks and insulin injections, before finally filing a complaint with the U.S. Department of Justice. The family later relocated before the complaint was resolved.

“That was emblematic of the types of problems we still encounter, where we feel that the rights of our patients are being discriminated against based on a diagnosis of type 1 diabetes,” said Taplin, who added that he reached out “at length” to educate officials at the patient’s school.

He said most educators want to do the right thing, but this incident was not an isolated one.

“This is a diagnosis that, within 1 or 2 days, parents are managing independently at home,” Taplin said. “It’s simply not realistic to think that it is OK for parents to do that, but that it’s not OK for school staff to be able to do it around lunchtime. It is absolutely possible and doable, and we want parents to know that they have the law on their side.”

Not every parent may understand that they have such a recourse when their child is denied their rights at school, Woodward said. To make sure parents are aware of what their child is entitled to, it is important for health care providers to ask parents about what the school day is like for their child, Woodward said — and to listen carefully to a parent’s response.

“If [providers] hear a parent talking about how an independent child is not allowed to check their blood sugar in the classroom, that’s a red flag,” she said. “Something isn’t right. Let the parent know that this is wrong, and it is best practice for capable patients to check their blood sugar in the classroom.”

A provider may need to play the role of educator, Woodward said.

“Many parents just take the gospel of the school at face value, and they accept it,” she said. “Diabetes is a disability by definition under federal law, and schools have certain legal obligations to provide care, and that care comes in the form of certain accommodations. If a child can’t safely and fairly access the school environment because he or she isn’t getting the care they need, that’s discrimination. The provider does play a role in asking those questions about the care provided at school, and making sure that the parents are familiar with the laws. We always encourage the providers to share our materials and information.”

Every pediatric endocrinologist should have the ADA brochure “Your School and Your Rights” in the waiting room to help educate parents about their child’s legal rights in the school setting, Woodward said.

Change needed

There is a lot for parents to learn in the days, weeks and months after a type 1 diabetes diagnosis for their child, Taplin said. But a diagnosis also offers an opportunity for clinicians and diabetes educators to educate parents about how to become their child’s best advocate.

“We appreciate that it’s difficult for schools to meet myriad needs — many kids with special needs,” he said. “But, it’s clear that with type 1 diabetes, it’s unethical and illegal to discriminate, and it’s not OK in 2017 for a child’s education to be substantially sidetracked due to type 1 diabetes. But sometimes, it still happens.”

The best way to address that problem, Taplin said, is to prepare.

“Get out in front of that issue early,” he said. “Have a school plan prepared and ready, ideally many weeks, if not several months before the start of a new school year. It’s hard to put the pieces of this together in a couple of days before the new school year.”

Another useful step is “just having a good open, clear conversation, as early as possible, with the teachers and the school,” Taplin said. “In most situations, I have found personally, with only a few exceptions, a reasonable and satisfactory and safe school plan can be put in place.”

Rinker said she hopes that continued advocacy will lead to more changes.

“I’d like to see all 50 states mandate that there is someone who is trained at each school that has a student with diabetes,” she said. “I want to make sure that those regulations are not just there, but that there is follow-through. That would be the dream, because then the risks [for children in school] are lower. Then all students would at least have someone available to them as needed.”

“School staff, in general, want more education,” Twining said. “It’s important to facilitate that, whether it’s networking with school nurses or having a speaker come in. Staff are craving that kind of interaction, and it helps them to problem solve and learn together. Not just for the school nurses, but for the teachers, the bus drivers and everyone else who needs to be, at least on some level, aware, even if not charged with primary responsibility.” – by Regina Schaffer

• References:
• AADE. Management of Children with Diabetes in the School Setting. Available at: www.diabeteseducator.org/docs/default-source/practice/practice-resources/position-statements/diabetes-in-the-school-setting-position-statement_final.pdf. Accessed June 19, 2017.
• ADA. Know Your Rights. Available at: www.diabetes.org/living-with-diabetes/know-your-rights/. Accessed June 21, 2017.
• ADA. Safe at School materials and information. Available at: diabetes.org/safeatschool. Accessed June 26, 2017.
• ADA. State Laws, Regulations and Policies for School Diabetes Care. Available at: diabetes.org/kidswin. Accessed June 19, 2017.
• CDC. Managing Diabetes at School Playbook. Available at: www.cdc.gov/features/ diabetesinschool/index.html. Accessed June 19, 2017.
• Jackson CC, et al. Diabetes Care. 2015;doi:10.2337/dc15-1418.
• JDRF. School Advisory Toolkit for Families. Available at: www.jdrf.org/wp-content/docs/JDRF_School_Advisory_Toolkit.pdf. Accessed June 21, 2017.
• Joslin Diabetes Center. Diabetes Education Program for School Nurses. Available at: http://www.joslin.org/education_program_for_school_nurses.html. Accessed June 21, 2017.

• For more information:
• Anastasia Albanese-O’Neill, PhD, ARNP, CDE, can be reached at the College of Medicine, Division of Pediatric Endocrinology, University of Florida, PO Box 100296, Gainesville, FL 32610; email: aalbanese@ufl.edu.
• Crystal Woodward, can be reached at the American Diabetes Association, 2451 Crystal Drive, Suite 900, Arlington, VA 22202; email: cjackson@diabetes.org.
• Joanne Rinker, MS, RD, CDE, LDN, FAADE, can be reached at the American Association of Diabetes Educators, 200 W. Madison, Suite 800, Chicago, IL 60606; email: jrinker@aadenet.org.
• Craig Taplin, MD, can be reached at Seattle Children’s Hospital, OC.7.820 – Endocrinology, 4800 Sand Point Way NE, Seattle, WA 98105; email: craig.taplin@seattlechildrens.org.
• Christine Twining, MD, FACE, can be reached at Maine Medical Partners Endocrinology and Diabetes Center, 175 U.S. Route 1, Scarborough, ME, 04074; email: twinic@mmc.org.

Disclosures: Albanese-O’Neill, Rinker, Taplin, Twining and Woodward report no relevant financial disclosures.

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