ISPAD Position Statement on Type 1 Diabetes in Schools

Abstract

The International Society for Pediatric and Adolescent Diabetes (ISPAD) strongly supports compliance with legal protections for children and adolescents with type 1 diabetes (T1D) to attend school, to be safe at school, and to receive optimal medical management during all school-associated activities [1]. ISPAD’s Clinical Practice Consensus Guidelines [2‒7] provide clinicians with concepts and standards for best clinical practice. To implement best clinical practice while the student is in the custody of the school requires understanding, respect, and compliance with the relevant legal frameworks [1‒3]. The task is to execute medically complex management in a workplace designed for education. In recognition of the unique workplace requirements, ISPAD first commissioned the ISPAD Position Statement on Type 1 Diabetes in Schools in 2018 [1] to assist schools to implement the Clinical Practice Consensus Guidelines’ concepts [2]. This 2024 Position Statement aims to clearly inform education authorities, schools, school personnel, parents and policy-makers on defined roles, legal responsibilities, human rights, and stakeholder obligations for the benefit of all students with T1D. Implementing best practice while students with T1D are in compulsory custody of a school has life-saving potential and reduces the risk of short- and long-term harm to enable the student to experience a rich and supportive academic environment [2‒6]. ISPAD’s primary role is to deliver advocacy and leadership [7] to ensure that children and young people with T1D are provided with a safe and secure learning environment in school and address confusion regarding roles and obligations that exist within school systems. This revised ISPAD Position Statement, authored by members of the ISPAD Diabetes in Schools Special Interest Group [8], contains globally applicable principles and fundamentals [9, 10].1.1 T1D is a complex chronic medical condition that requires skilled medical and psychosocial management with a multidisciplinary team approach [1‒6].1.2 There is overwhelming evidence supporting the benefits of spending maximal time in normoglycemia and the harms associated with spending time outside that target range [1‒6]. The aim should be to maintain glucose targets as close as possible to normoglycemia during the school day and other school sponsored activities.1.3 Intensive insulin therapy (IIT) is the recommended therapy for young people with T1D because it leads to improved health outcomes and reduced risk of short-term and long-term complications. Intensive insulin therapy usually comprises frequent glucose monitoring, carbohydrate quantification, insulin dose calculation, insulin administration with meals, and insulin and nutrition adjustments for physical activity [1‒6].1.4 ISPAD recognizes that those living with T1D across the globe face a wide variation in access to modern insulins, advanced technology devices, glucose control material and proficient and skilled diabetes education resources. This results in different levels of clinical care internationally. Individual management is also influenced by unique family circumstances and personal or parental skill levels [1‒6].1.5 ISPAD acknowledges that these principles will apply to other forms of diabetes that require administration of insulin whilst the student is in the custody of the school.2.1 ISPAD advocates that the absolute minimal level of T1D care at school in all countries abides by the following principles:2.2 A student with T1D may spend more than half of their waking hours in the custody and care of school, including time spent away from the security of home participating in after-school activities, school sports days, field trips, excursions, school camps, and commuting to and from school [1‒3].2.3 Time at school often presents as the most challenging part of the day for glucose levels to stay in target range. The usual school day comprises many variables that influence glucose levels, such as sedentary learning times, physically active times, meal and snack times, and emotional variation including excitement and stress [1‒6, 11‒15].3.1 T1D causes substantial impact on the student’s life, as well as that of their siblings, family relationships, and parental working lives. Each family will have different access to physical, emotional and support resources, coping skills, economic circumstances, and medical education and support [1‒3].3.2 The emotional health of the student with T1D is optimized by a positive, proactive approach to all challenges of T1D, especially at school. The student should be supported by peers and school personnel to do anything their peers can do and not be restricted or limited in activities. The student should be provided with as little special care as possible, but as much as necessary [1‒3, 11‒15].3.3 Parents are obliged to advocate for their child, knowing the short-term and long-term safety issues and the risk of complications or shortened life span which may result from inappropriate care [1].3.4 If the parent considers the student is not yet sufficiently mature and capable of making and putting into effect their own decisions, the student will require assistance and/or supervision [1].3.5 While the development of self-management skills is encouraged, the student should not experience disadvantage because of their ability to independently manage T1D. Students may be capable but should never be solely responsible for their management at school [1‒3, 11].3.6 Schools should not expect that young students will “learn responsibility” for self-managing T1D by leaving them unsupported during school hours. Schools should also understand that the duration the student has lived with T1D does not determine their ability to be self-sufficient [1‒3].3.7 The privacy and confidentiality of the student’s T1D diagnosis and management must be respected, acknowledged by the school, discussed with the student and parent, and protected by the school [1‒3].3.8 Because of the relentless public demands of managing T1D, and the ongoing public discussion about “diabetes,” students may be exposed to stigma and experience anxiety, depression, and social isolation. These feelings may lead to reluctance to effectively self-manage, especially during adolescence [1, 2, 8, 16, 17].4.1 ISPAD recommends the student’s medical orders comprise of the following:4.1.1 A concise emergency response plan (ERP) outlining recognition and individualized treatment protocols for low glucose levels and for high glucose levels [1‒3].4.1.2 Detailed individualized medical orders, also known as the diabetes management plan (DMP) consented by the parent or student and signed by the prescribing physician or delegated medical team member. The DMP outlines the physician’s medical instructions for that student at school. The DMP should specify what diabetes responsibilities can or cannot be undertaken by the student based on the student’s age, diabetes self-care abilities, and cognitive maturity. These include blood glucose checking, insulin administration, meal planning and adjustment, and adjustments for exercise [1‒3, 18].4.1.3 No other party can be a signatory to prescribed and consented medical orders [1, 19].4.2 The student’s individualized medical orders (DMP) and ERP cannot be altered by a third party under any circumstances without the consent and authorization of the parent and physician [1, 18, 19].4.3 The school’s obligation to execute measures to accommodate the student‘s medical needs while the student is in the school’s custody does not result from the physician delegating those responsibilities to the school or school personnel. The physician is not responsible for the school’s actions that are adopted to fulfil the duty of care owed to the student [18, 19].4.4 Parents are the final arbiters of whether their child can self-manage certain aspects of T1D, including glucose monitoring and self-administration of insulin. The medical team should guide and support parents to ensure the student is not subject to inappropriately unrealistic expectations [1].4.5 The medical team should advise on the content of training required to best execute the medical orders and include these requirements in the order (DMP) [1‒3].4.6 Schools, in conjunction with the parent (and student), should develop a written accommodations plan on how the student’s medical orders are implemented. This document is known in various jurisdictions as a “504 Plan” (USA), “Health Support Plan” (Australia) and “Individual Care Plan” (Canada) [1‒3, 11‒18].4.7 A parent cannot be expected to “fill the gap” of school resources and provide their child’s medical management during the school day and school-sponsored activities [1‒3].4.8 Schools must permit students with T1D to monitor their glucose levels, administer insulin, and treat both low glucose and high glucose levels according to the medical orders (DMP) and written accommodations plan, in an appropriately safe place chosen in collaboration with the student and parent [1‒3, 18].4.9 T1D management should occur with minimal disruption to normal class routines and activities [1‒3].4.10 Students with T1D have the right to be encouraged and enabled to participate in physical activity with the appropriate adjustments for safety and optimal performance clearly outlined in the student’s medical orders (DMP) [1‒3, 11‒15].4.11 Managing nutrition during school hours, including calculation of carbohydrate content of school meals, is an important requirement of optimal T1D management. It requires a defined approach between parent, student, and school personnel. Whoever (parent or school personnel) is responsible to provide/calculate/check the carbohydrate content of meals and snacks should be identified in each case and in each circumstance, both on-campus and off-campus [1‒3].4.12 Schools should establish processes regarding the use and handling of diabetes equipment including lancets, syringes, or needles, and used test strips. Jurisdictional requirements and workplace safety should inform schools on the requirements to manage sharps and biological waste to minimize risks to both students and school personnel. It is recommendable that parents should provide the necessary resources such as sharps containers or other means of disposal, depending on local circumstances [1‒3].4.13 When sitting an examination, students with T1D are entitled to appropriate adjustments and provisions, including access to glucose self-monitoring devices (which may include a smart phone or other electronic device for CGM), access to low-glucose treatment, access to insulin, access to water, access to toilet, and be granted extra time if required. Education programs to assist school personnel to safely execute the appropriate adjustments during exams should be readily accessible [1‒3].5.1 The parent (and student where appropriate) should clearly define how to execute the student’s medical orders at school, both on and off campus, and the school should clearly define how they will execute the student’s medical orders at school, both on and off campus.5.2 Communication strategies for the student with T1D should be clear, respectful, timely, and simple. Parents, and the student’s medical team (with parental consent), should be accessible points of escalation for school personnel. For continuity of care, the medical team contact should be identified for each student [1‒3].5.3 Positive outcomes for the student can be achieved with a mutually supportive approach with effective communication between parents and school, augmented by modern communication technology if available [1‒3].6.1. Schools are workplaces, subject to workplace safety legislation in many jurisdictions. Schools are obliged to manage the risks to the health and safety of all participants in their workplace. This includes ensuring schools provide safe systems of work, do not endanger the health of their students, and ensure their employees have the skills, knowledge, abilities, and appropriate standard of training to perform duties [18, 20‒23].6.2. ISPAD recognizes and acknowledges that school personnel comprise a diverse range of education professionals [23], whose primary expertise is in educating young people. They are not lay persons but a professional class of employees [23]. School personnel are entitled to education and training to work safely [17].6.3. Most school personnel have no medical qualifications, no medical training, and no medical experience [23].6.4. Some school personnel may be uncomfortable with health-related information and procedures [1‒3, 11]. Various resources exist, and tools have been developed and evaluated [8, 19], to educate and train school personnel.6.5. The contributions made by school personnel to appropriately assist the student with T1D should be acknowledged and appreciated by all stakeholders involved in the student’s care [1‒3].7.1. Legal frameworks and medicolegal obligations for safe and optimal management of T1D at school provide clarity of roles and purpose that can be successfully used to promote best medical practice to serve the best interests of the student, family, school personnel, and school [1‒3, 5, 17, 18, 24].7.2. The World Health Organization recognizes T1D as a disability. Many countries recognize T1D under common law as a disability [1, 16, 25‒30].7.3. Recognition of T1D as a disability should be accurately represented to patients and stakeholders, acknowledging that such terminology does not define the person. Rather it provides the legal framework obligations for optimal management and equal opportunity. Disability should not equal exclusion and can be managed with inclusive interaction [25].7.4. Accordingly, legal frameworks exist in many countries to protect children and adolescents with T1D against discrimination. Those frameworks affirm the student’s legal and human rights to have an equal opportunity to participate in all aspects of school life on the same basis as their peers [1, 4, 5, 11‒15, 18].7.5. International human rights law lays down the obligations of governments to act in certain ways, or to refrain from certain acts, to promote and protect human rights and fundamental freedoms of or The rights of children with are in the on the of the and the on the of with [1, Most including are or to the which should protect young people with T1D from discrimination. This may be for school or such as schools to self-care in school or provide appropriately personnel to enable the child to participate in school life on an equal basis with their peers [1, In countries where protections to support students with T1D are not ISPAD advocates that those countries to their obligation under the students with T1D should be to attend school in a safe and supportive environment that best practice of management of T1D with in with legal principles [1‒3, 11‒15, 18, A common of disability and legislation schools and education to adjustments or accommodations to prescribed complex T1D medical care, including the of appropriately personnel while the school custody and care of the student [1‒3, 16, 17, In such adjustments for a student with T1D may include insulin or administration where In it may also where prescribed with parental consent in the medical orders complex diabetes management to the requirements of optimal use of advanced diabetes technology including insulin glucose and insulin systems In where blood glucose and are not readily ISPAD advocates for the most optimal possible, including first management of with supervision of the student management also includes and insulin administration during school hours obligations have been in various and are across jurisdictions [1‒3, education systems require compulsory school the student is delegated to the school. This a duty for schools to to protect students from harm [1, 2, under common law and systems of all school students, of their medical are protected the Schools are required to care to protect students from harm that is The legal of duties and responsibilities to to a it can be be by an act or [1‒3, There is harm for the student with T1D glucose prescribed medical orders, the school the student the best opportunity to maintain target glucose levels [1‒6, 17, There is harm for the student with T1D and that and emotional health [1, 4, 5, 16, In countries with obligation for parents to their child to school, the standard of care required of schools is The obligations for schools the of students and require schools and school personnel to act to best ensure against the risk of This includes students from harm by or [1, It is important that school personnel are about the of T1D and the school’s obligations while they have custody and care of the student [23]. The school’s role for students that the obligations to the student with T1D are not or by a student to be [1, To assist the school and education to their requirements and legal obligations for a student with T1D, those schools and education all school personnel about T1D and the to to emergency [1‒3, 11‒15, 18, and train school personnel have responsibilities for the student on first management. The of such education and training requires parental and student [1‒3, 11‒15, 18, which may include a school or other can execute complex individualized T1D medical care, including insulin administration [1‒3, 11‒15, 18, care is the approach to the and of health care that is in understanding, and between the medical students and their and school personnel The responsibilities of the stakeholders To their obligations to an student with T1D, schools have a to provide education and training for their Education is the of and about is the skill development and of the education on the student with Education and training must with local requirements and The ISPAD recommended levels of T1D care, education and training are outlined in the school personnel have obligations to a student with T1D. Accordingly, school personnel should receive and a education to develop a about needs for the student with T1D [1, 18, ISPAD to education as The level 1 education should include the principles of T1D and how it on students and This includes the recognition of and to treat low glucose levels, the requirements to act if the student is and the escalation protocols for that student [1, 4, Accordingly, it is important to have and appropriate T1D education to enable and education of or school personnel, including of escalation required [1]. There are ISPAD appropriate education available [8, Schools have an obligation to protect the health and safety of all students, of a T1D and to protect the health and safety of all [23]. This includes a defined as emergency care and/or treatment to life, to the condition from and to promote assistance is usually by a of school personnel with first training School personnel with responsibilities for the student with T1D, or those with of the student while in the school’s custody and care, are to to to medical or to assist such school personnel to their obligations to the student, they must have T1D training as a workplace obligation Those school should also have education on the and prescribed medical orders as outlined in the student’s medical order (DMP) and written accommodations plan [1‒3]. They should also be on the of the impact of and activity on that glucose levels for planning for special in the The student with T1D has the right to access to a with first skills to them from harm [1‒3, 11‒15, The T1D first response includes recognition and treatment of and the escalation of any complex medical care requirements to personnel [1‒3, 11‒15, Accordingly, T1D first training may subject to local The recommended to level education and training is to For a student with T1D, complex medical care includes administration of insulin and care may also require medical and that impact the health of the student [1‒3]. These may include but are not limited care of the student with T1D, including administration, or supervision of insulin administration or insulin requires school personnel to be and to parental consent [1‒3, 16, Most school personnel are not medically to execute complex medical While those personnel have obligations to provide first they are not obliged to be to execute complex medical care [1, 4, 5, 16, Schools and education are obliged to provide personnel are available and to safely execute and manage the complex medical needs of a student with T1D to If a medically health professional is in the school ISPAD supports personnel with the appropriate training, and to provide consented complex T1D care in with local and requirements [1, 4, 5, 16, The content of level education and training should be student with of and how to perform each task outlined in the student’s medical orders (DMP) and should a and consented communication plan [1, 16, education and training of school personnel the have level 1 education and level education and first training the school personnel to understand the medical requirements of that The parent may the student’s medical including the diabetes to support the to the school on that student’s needs The T1D education and training of school personnel and school on complex T1D care is to as ISPAD level education and The recommended to level education and training is to While it is the of the medical team to provide training to parents and students, it is not the of the medical team to provide training to including school personnel. is it the of the medical team to school personnel in complex T1D While the medical team may the school to appropriate the medical team is not responsible for ensuring of the education or monitoring medical orders do not whether the student is on or off [9, 16, 18, adjustments may be made to the medical orders to address variables in circumstances, for physical the training required for school personnel may for off-campus activities to safely execute prescribed medical care [23]. The school must and address the risks to the off-campus access to communication local and of medical 18, The of off-campus activities should be in a between all to assist the school in obligations to the student’s safety and 16, 18, To assist with compliance with and schools should risk by the for each off-campus Schools should ensure level school personnel are available in case the student of their usual standard of self-care to effectively with other medical that may and psychosocial The medical team may advise on the content of training required to best execute the medical orders off campus, but it is the school’s obligation to implement those medical orders while the student is in the school’s custody and care [1, 16, 18, Parents should provide to the school to the student on are members of the ISPAD Schools Special Interest Group the of legal young people living with T1D, and school personnel have or to the of ISPAD Position The to and and of for their public and legal of the Position Statement to ensure with legal frameworks that protect the human and legal rights of a student with T1D in the school parent advocate and ISPAD for lived experience in the legal frameworks in T1D in for ISPAD also acknowledges the Society for the of the Position Statement the of and the Legal of that is no of no for the work on and and and and and and information in document is based available and should not be as legal

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