Standardizing Diabetes Care in Colorado Schools: Nearly Two Decades of Success

Type 1 diabetes management is difficult. Even with access to the best technology, training, and health care teams, and despite demonstrable recent improvements in care and outcomes, the majority of children and adolescents living with type 1 diabetes in the United States still do not reach the American Diabetes Association (ADA)-recommended goal A1C of <7%, placing them at risk for long-term poor outcomes, including nephropathy, retinopathy, neuropathy, and cardiovascular disease (1,2). Moreover, poor glycemic trends in this age-group are clearly associated with higher risk of diabetic ketoacidosis and severe hypoglycemia (1).

School is a particularly challenging time for diabetes management. During the roughly 1,200 hours their children with diabetes attend school each year, parents cede responsibility to personnel who usually have far less and more general experience in nuanced, hourly diabetes decision-making (3). In Colorado, the challenge of managing diabetes at school is compounded by the fact that most school nurses cover several schools, resulting in diabetes tasks being delegated to trained but unlicensed personnel. Moreover, type 1 diabetes currently affects ∼2 per 1,000 youth, and this rate is rising by 2% per year, which will continue to increase the number of schools that have at least one student with diabetes (4,5). Despite this unbalanced ratio of school nurses to students with diabetes, delegation can be executed safely. The ADA has strongly advocated this paradigm, even going so far as to win lawsuits in New York City and California on this matter (6).

In our experience in Colorado, diverse stakeholders easily agree on the guiding goal of providing a healthy and safe environment for students that promotes learning and academic achievement. However, as we found, these stakeholders sometimes struggle to acknowledge different perspectives about how this goal can be met, how responsibilities can be carried out, and who is responsible for specific tasks (7). For example, many families experience worry that schools will struggle to manage diabetes as well as they do at home. On the other hand, school personnel occasionally report that some families’ expectations for frequency and complexity of diabetes interventions are not practically replicated in a classroom and too frequently disrupt the learning process.

By 2005, the ADA in Colorado had begun experiencing an increase in the volume of calls from parents seeking advocacy for their child’s care at school, and there was increasing disagreement among parents, health care providers (HCPs), and school staff about what constituted reasonable and safe diabetes management in the school and childcare setting. A 2006 survey conducted by the ADA further indicated a need to improve diabetes care at schools (7).

Therefore, a group of stakeholders led by the Colorado Department of Education, the Colorado Department of Public Health and Environment, and the ADA convened to standardize and improve diabetes management in Colorado schools. A collaborative was formed to address these issues. Since then, participating stakeholders have continued to identify issues, barriers, challenges, and opportunities on which to collaborate to improve the management of diabetes in the Colorado school setting.

The first step in building a collaborative was to bring together an array of stakeholders, including parents of children living with diabetes, school nurses and administrators, endocrinologists, diabetes educators, and representatives from the ADA, the Colorado Department of Education, and the Colorado Department of Public Health and Environment. In a series of meetings, this group agreed on a shared understanding of the challenges and on a common goal. Each representative understood how this collaboration would increase safety, reduce confusion, improve efficiency, and minimize conflict, all of which was in their shared interests. However, the need for an objective facilitator was immediately obvious. Guiding principles for the care of Colorado students with chronic health conditions, including diabetes, were created (8). Standardization became the next goal. To accomplish this, the nascent collaborative formed four workgroups to design the role of the diabetes resource nurse (DRN) and to generate toolkits for parents, school nurses, and HCPs (7).

DRNs provide consultation to school nurses and staff within a school district (i.e., district DRNs) or across multiple school districts in a defined geographical region (i.e., regional DRNs). District DRNs are hired by the school district, and regional DRNs are employed by Diabetes Resource Nurses of Colorado, Inc. Their consultation work includes assisting in the prioritization of diabetes care activities, developing Section 504 plans and individualized health care plans, helping the district or region identify strengths and weaknesses of their diabetes program, making recommendations for improvement, and providing training to enhance diabetes-related knowledge and skills for school staff. Through these efforts, DRNs help to standardize diabetes care at schools.

DRNs are readily available to school nurses and the student’s team for day-to-day questions but do not execute the hands-on care. Occasionally, for example, when there is a child who is newly diagnosed with type 1 diabetes in a school that has not recently had a student needing such care, a district DRN can provide assistance with care for a short interval to allow the student to return to school quickly. However, a regional DRN would not have this responsibility. Meanwhile, both the district and regional DRN would train the school nurse and unlicensed personnel in the student’s care to ensure their smooth transition into that role.

Additionally, when questions arise about at-school diabetes care, DRNs can step in as liaisons between parents, the school nurse, and the provider who has written the student’s diabetes medical management plan (DMMP) for school. This is especially important in situations in which the school nurse and parents are not in agreement about how management at school should be carried out, such as when a child’s parents have requested interventions that are either very frequent or not aligned with the child’s DMMP. DRNs also help train school nurses and delegated unlicensed staff on how to use new diabetes technology, such as when a child starts on a new continuous glucose monitoring (CGM) system, insulin pump, or automated insulin delivery (AID) system. As new technology becomes approved for pediatric use, DRNs provide or coordinate education and training for school nurses as soon as the technology is available.

Delegation of insulin and glucagon administration was initially a task that many school nurses found to be unsettling. Advocacy from the Diabetes Care in Colorado Schools Collaborative led the Colorado Board of Nursing to change its rules in 2007 to allow delegation of insulin and glucagon administration. With this provision in place, DRNs are the ideal people to train school nurses and delegated staff to be competent and comfortable with administration of these medications to keep students safe at school and during off-campus activities such as field trips and extracurricular activities.

In Colorado, we currently have 30 DRNs who assist 802 school nurses to serve students with diabetes at 1,927 public schools in 178 districts (9). All school districts in Colorado have access to the DRN program (district or regional), including rural areas where there may be only one nurse contracted to cover several districts. In addition to serving students in kindergarten through high school, the district DRNs are also available to help with diabetes management consultation for childcare and preschool programs run through the school districts. Thus, the DRN program supports excellent diabetes management in the childcare and school setting for individuals aged 0–21 years. Additionally, the regional DRNs provide this service to private schools, childcare centers, and preschool programs, as requested.

In the early years of the program, the DRN role was an additional, unfunded duty for school nurses. However, as school districts have recognized the value of DRNs, they have increasingly funded these positions to protect time for nurses to serve as DRNs. Initially, the regional DRNs were financially supported by partners in the Collaborative, including the Colorado Department of Education, the Colorado Department of Public Health, and the ADA (7). Unfortunately, those funding sources to support regional DRNs have dwindled over the years, and by 2022, the regional DRN program was completely unfunded. Nevertheless, having experienced the benefits of this program, volunteers have continued this valuable work. In July 2022, the DRN program was approved for 501(c)3 nonprofit status. The Collaborative is continuing to increase awareness of the organization and has initiated public fundraising in addition to recently developed fee-for-service continuing education opportunities for school nurses, including workshops and monthly virtual classes. In 2023, the DRN program received a small grant to help cover costs for DRNs to train school nurses.

Lacking a statewide mandate for districts to support DRN positions, some areas, generally the more rural districts, are underserved. Key personnel remain unaware of the DRN program, which is why the regional DRNs are still necessary to support these schools. To improve coverage, one ongoing goal for the Collaborative is to expand district DRN coverage eventually to support all of these rural schools in the state.

DRNs are required to have a minimum of 5 years of experience working as a school nurse and evidence of experience providing care to people living with diabetes. To prepare for the work and maintain competency, they are expected to arrange and participate in a practicum session for health care workers in diabetes, participate in an annual training for DRNs, and consistently attend monthly DRN safety huddle conference calls. A strength of the DRN program is the ongoing education of the DRNs and their collaboration with the local endocrinologists. The DRN program leadership also organizes and executes six virtual education sessions covering a variety of pertinent topics in diabetes management for the DRNs and school nurses, as well as a 2-day annual workshop of hands-on training for school nurses. Topics include diabetes pathology, how to interpret HCP orders, how to complete forms and documents, general diabetes management, trends in diabetes incidence and care, mental health considerations, and training on new diabetes technologies. During the coronavirus disease 2019 (COVID-19) pandemic, physicians with expertise in diabetes and COVID-19 educated attendees on the known risks that the novel virus poses to children with diabetes.

There are additional suggested diabetes training and skill-building opportunities as well, including volunteering at a children’s diabetes camp and attending a comprehensive conference run by global experts in diabetes held each July in Colorado for health care workers who serve people with diabetes.

In addition to embedding diabetes expertise within the school systems via DRNs, it was important to establish standards for diabetes care. Therefore, in 2013, leaders from the Diabetes Care in Colorado Schools Collaborative brought together parents of schoolchildren with diabetes, school nurses, DRNs, endocrinologists, certified diabetes educators, and representatives from the Colorado Department of Education and the ADA to write the first Standards of Care for Diabetes Management in the School Setting & Licensed Child Care Facilities. This originally two-page document covered communication between HCPs and school nurses, standards for monitoring blood glucose and treating hypo- and hyperglycemia, and principles of CGM, insulin management, insulin pump use, and student self-care.

Each year, this group of stakeholders meets to update the standards, addressing questions that have arisen during the prior school year, many of which are prompted by the rapidly changing diabetes technology landscape. By 2023, the standards evolved into a 14-page document, with expansion to serve licensed childcare facilities and children with type 2 diabetes (10). Other major changes included the addition of external links regarding student privacy requirements, rules and regulations for the delegation of nursing tasks, commonly asked questions about the Americans with Disabilities Act, and references to the ADA’s Standards of Care in Diabetes. The current Colorado standards also provide much more detail about treatment of hypo- and hyperglycemia, including glucose ranges for safe school attendance and exercise participation, with each of these recommendations clarified in table format (Figures 1–4).

Several new topics have been added to the standards over the years. These have occasionally been midyear addendums because of updated diabetes care standards or newly available technologies. In response to stakeholder concerns, the standards have also added recommendations for emergency preparedness, mental health considerations, before- and after-school transportation, students who are nonadherent to treatment, and situations in which a child’s parents or guardians have requested overly frequent diabetes interventions or measures that go beyond the child’s DMMP.

Starting around 2015, as remote monitoring of CGM data became more available and popular, many school districts were hesitant to provide guest internet access for students with diabetes who were using these devices. The Collaborative responded by recommending that schools provide such access, in line with current ADA recommendations (11).

One key element to successful adoption of the new standards was that HCP orders from each pediatric endocrinology office in the state reference the standards and the website where they can be found. This accomplishment was facilitated by Collaborative-created standard HCP order forms that were quickly accepted by endocrinologists and incorporated as templates into their medical record systems.

The Collaborative also standardized diabetes care by creating toolkits for parents, school nurses, and HCPs and making them accessible on the Collaborative’s website (12).

The toolkit for parents offers resources and examples of Section 504 forms and information parents can provide to teachers and other school personnel to help them prepare for diabetes care in the classroom, on field trips, during class parties, and in emergency situations such as lockdowns.

The school nurse toolkit helps school nurses organize diabetes care, with recommendations for intake of students with diabetes, answers to frequently asked questions, and emergency action planning. It contains robust information on delegation of diabetes care, including training and skills checklists and nursing rules and regulations. To assist with insulin dose calculations and in response to frequent questions, the toolkit contains tables for insulin-to-carbohydrate ratios and blood glucose correction tables. There are also handouts that can help teachers and substitute teachers recognize symptoms of hypoglycemia and recommendations for field trip planning.

In addition to the HCP order templates, there are templates for one-time orders that satisfy the minimum requirements for an order and can be easily printed, signed, and faxed by an HCP’s office to a school when circumstances arise.

For parents of children with diabetes, the toolkits, Colorado standards of care, and local support from DRNs help to establish expectations for diabetes management at school and in childcare facilities. This is especially important for families whose child was recently diagnosed or started on a new therapy plan.

Parents may request that a DRN train school staff on skills such as how to use an AID system. In this paradigm, parents are not responsible for providing such training. Parents also may call a DRN to advocate for their child with school administrators and teachers. For example, DRNs can settle conflicts when children are told inappropriately that they may not attend a school event because of their diabetes management needs. DRNs can then alleviate barriers by training staff who will be responsible for diabetes care at school events.

The Collaborative’s standards also alleviate parents’ concerns that their child is being discriminated against and often clarify expectations so that discrimination does not occur.

Our school nurse colleagues also report anecdotally that standardized diabetes care facilitates a quicker return to school after a diabetes diagnosis and a smoother transition when a family moves from one Colorado school district to another.

Clear expectations for diabetes management at school also enables good collaboration between schools and diabetes clinics for children who do not receive adequate diabetes care at home. School nurses are empowered to reach out to a child’s treating physician when the child consistently arrives at school with hyperglycemia and ketosis or when parents recommend unusual care such as overly aggressive hypoglycemia treatment or blood glucose targets. In many cases, such action allows the physician to recommend a different or more specific treatment, such as administering the daily long-acting insulin dose at school. Rarely, but importantly, communication between these parties also facilitates appropriate reporting of medical neglect.

Standardized diabetes care also establishes expectations for school nurses and administrators. One of the early barriers we encountered was concern from some school nurses about delegating insulin and glucagon administration under their license. Statewide diabetes standards, local and quickly responsive support from DRNs, references to the Colorado Nurse and Nurse Aid Practice Act, and annual school nurse workshops all served to overcome these concerns and establish safe and effective practices for such delegation.

The annual workshops have also raised the bar for school nurses’ understanding of nuances and special scenarios in diabetes management, including glucose monitoring technology accuracy, use of special exercise and activity modes of insulin pumps (with and without AID), remote monitoring of CGM readings, and considerations for children whose families have elected to give them a very-low-carbohydrate diet. School nurses still occasionally find themselves at the center of conflict with families who expect diabetes management practices at a frequency and complexity that cannot be accomplished at school without disrupting their child’s access to learning. Support from DRNs and clarification of what is considered reasonable and safe within the Colorado standards help school nurses navigate these situations objectively to identify what is safe and best for students.

As technology has evolved, so has communication among families, students, and schools. The DRNs are trained to discuss communication preferences with parents and to include this preference on their child’s individualized health plan so that others who are delegated to perform diabetes care are aware. Families may communicate with their child’s school via text, e-mail, or phone, as determined by the Section 504 plan. Families may also communicate about diabetes care with their child in school, usually by text, which is also specifically indicated in the Section 504 plan. Families occasionally suggest insulin dose adjustments to unlicensed assistive personnel, but those conversations are directed back to the school nurse because medication dose adjustments fall under their license and cannot be delegated.

The standardized approach also facilitates efficiency and clarity in pediatric endocrinologists’ offices. In the offices at the Barbara Davis Center and Children’s Hospital Colorado, both at the University of Colorado, we began using template HCP orders that are in agreement with the standard orders provided on the Collaborative’s website to generate new orders automatically for every patient between the ages of 4 and 19 years at every visit. The Barbara Davis Center provides care for ∼3,000 patients with type 1 diabetes who are <18 years of age. In an unpublished quality improvement project, we found that, before transitioning to automated order generation, we were manually generating several thousand orders each year, with >1,200 of them coinciding with the start of the school year in August. These necessary orders placed an enormous administrative burden on our team, which has been almost entirely relieved.

Furthermore, order templates refer to blood glucose ranges and glucagon doses according to the Colorado standards and, in multiple places, refer readers directly to the standards for details about diabetes care. The standards also obviate the inane, duplicative completion of medication forms that are unique to each district by clarifying that they are unnecessary if all pertinent information exists in the templated HCP orders.

Moreover, because DRNs are a known point of contact responsible for diabetes management planning in the schools, school nurses typically call on them for clarification rather than contacting endocrinologists, potentially saving medical offices hundreds of phone calls per year.

Standardizing diabetes care throughout Colorado schools and childcare facilities has been a progressive work over 18 years involving goodwill and collaboration among parties invested in the safe care of children with diabetes in these settings. Despite limited funding, a small group of leaders has maintained momentum, driven by diabetes care experts within the school and childcare systems, eager school personnel who care for children with diabetes each day, parents who lend their voices to advocate for their children and others, and volunteer diabetes professionals who are willing to contribute their time and expertise to the collaboration. Challenges remain, including expanding the district DRN program to cover more schools throughout the state and responding to constant changes in diabetes practice.

The authors thank the authors of Colorado’s Standards of Care for Diabetes Management in the School Setting & Licensed Child Care Facilities, the district and regional DRNs, and all of the school nurses and unlicensed assistive personnel who care for children with diabetes in Colorado schools.

A.H. is a contracted certified pump trainer for Insulet, Medtronic Diabetes, and Tandem Diabetes Care and is employed as the executive director of Diabetes Resource Nurses of Colorado, Inc. She also has received development funding from the National Association of School Nurses. P.B.N. has received development funding from Diabetes Resource Nurses of Colorado, Inc., and the National Association of School Nurses. L.W. has received consultation/training fees and development funding from Diabetes Resource Nurses of Colorado, Inc., and training fees and development funding from the National Association of School Nurses. No other potential conflicts of interest relevant to this article were reported.

G.T.A. wrote the manuscript and researched the data. A.H., P.B.N., D.C., K.P., and L.W. contributed to the discussion and reviewed and edited the manuscript. G.T.A. is the guarantor of this work and, as such, had full access to all the information presented and takes responsibility for the integrity of the content.