Clara is a 5 year old, recently diagnosed with RIGHTS DIABETES PROTECTING THE OF SCHOOL CHILDREN W I T H UPDATED IIT CHICAGO-KENT COLLEGE OF LAW:

Transcription

1 UPDATED IIT CHICAGO-KENT COLLEGE OF LAW: PROTECTING THE RIGHTS OF SCHOOL CHILDREN W I T H DIABETES Clara is a 5 year old, recently diagnosed with type 1 diabetes. She attends kindergarten in a large urban school district. Because she is so young, she is not yet able to check her own blood glucose levels or administer insulin. Clara s school agreed to provide a licensed practical nurse three days a week. However, even after several meetings with the parents and school officials, the school did not have a plan for who would care for Clara when the nurse was absent or unavailable. The principal suggested that Clara s father come to the school to care for Clara during the school day. The principal also stated that Clara s mother or father would be required to attend field trips. Clara s father was concerned his employer would fire him if he left work repeatedly during the school day, which would leave the family without his income and without health insurance, but the parents were also nervous about leaving Clara unattended at the school under those circumstances. Clara s parents finally sought the aid of a pro bono attorney at IIT Chicago-Kent College of Law s Health and Disability Legal Clinic. After hearing the parents were legally represented, the school hired its own attorney. At the next meeting, both sides were represented by counsel and the school agreed it would allow the training of school staff and administrator volunteers by a certified diabetes educator. This would ensure that someone would always be on the premises who knew how to care for Clara. It would also ensure that Clara could attend field trips and her parents would not be obligated to miss work to care for her at school.

2 CY PRES AWARD THE FOUNDATION FOR THE DIABETES ACTIVITIES AT IIT CHICAGO-KENT IIT Chicago-Kent College of Law received seed funding for diabetes research and legal advocacy through a monetary award from a 2007 settlement of a consumer class action lawsuit that challenged the effectiveness of the diabetes drug Rezulin. Part of this award is used to provide pro bono legal representation to individuals and groups of individuals who are denied access to medical treatment for diabetes and diabetes-related illnesses. The cases most frequently arise against insurance companies, the Social Security Administration, schools, day care providers, employers, detention centers and prisons. The award also allows IIT Chicago-Kent Faculty and Staff at the IIT Center for Diabetes Research and Policy (CDRP) to influence policy, write amicus briefs, provide resources to individuals with diabetes, their families, advocates, lawyers, and students, collaborate with community leaders and organizations, give presentations, and promote interdisciplinary endeavors. Clara s case is not unique. There are more than 215,000 children under age 20 who have either type 1 or type 2 diabetes the equivalent of 0.26% of the U.S. population under age 20. Each year an estimated 15,000 children are diagnosed with type 1 diabetes, an autoimmune disease in which the immune system attacks and destroys the insulin producing cells (beta cells) in the pancreas. The incidence of type 1 diabetes (approximately 1 out of every children within this age group) seems to be rising, but researchers do not know why. Although most children with diabetes have type 1, a growing number of children are also being diagnosed with type 2 diabetes, the most common form of diabetes, which accounts for 90-95% of diabetes diagnoses in the U.S. population. In type 2 diabetes, the pancreas initially produces enough insulin; however, the body s cells cannot use it as effectively due to a condition known as insulin resistance. This form generally strikes older people and is often associated with physical inactivity, obesity and a family history of diabetes. Each year an estimated 3,700 children under age 20 are diagnosed with type 2 diabetes. The rate of diagnosis of type 2 diabetes is increasing, and the rates among American Indian, African American, Hispanic/Latino and Asian/ Pacific Islander children and adolescents are increasing faster than among white non-hispanic children and adolescents. Diabetes affects children 24 hours a day and needs to be managed constantly, including when the children are at school. Yet schools may lack information about caring for children with diabetes. Some schools do not allow students with diabetes to care for themselves even if they know how to do so safely. In schools with nurses, the children may miss out on valuable class time trying to find the nurse at the many points during the day when they need to check their blood glucose levels. In many schools there are no nurses. In fact, Illinois has one of the worst ratios of nurses to school children. There is only one nurse per 2,023 students, which is substantially lower than the one school nurse per 750 students ratio recommended by Healthy People 2020, the U.S. Department of Health and Human Services national health objectives. Children with diabetes are sometimes stigmatized or discriminated against in school. Some schools forbid children with diabetes from riding the bus, participating in after-school activities, attending field trips, testing their blood glucose as needed, or receiving or selfadministering insulin. Discriminatory behavior by a school jeopardizes the health of a student with diabetes in both the short and long term. People with diabetes are at risk of hypoglycemia, which occurs when blood glucose levels drop too low to provide enough energy for the body s activities. Hypoglycemia can happen from too much insulin or from not enough food and can be treated by drinking juice or soft drinks, eating snacks or chewing glucose tablets to raise low blood glucose levels. Some symptoms of hypoglycemia include dizziness, sleepiness and confusion. In rare cases, severe hypoglycemia can result. Severe hypoglycemia can cause seizures, comas, brain damage and even death. It is treated through an injection of glucagon, a hormone that raises blood glucose levels by causing the release of glycogen from the liver. Glucagon is a potentially lifesaving treatment that poses little risk to a student; potential side effects include nausea and vomiting. If hypoglycemia is untreated, the consequences can be dire. A 14 year old with diabetes describes a hypoglycemic episode in class: I started to feel really weird and like I was shaking and getting sweaty and I felt a bit strange so I couldn t really tell Mr. Simms and speak and he kind of just looked at me weird and asked if I was ok, but luckily Harvey (a school friend) knew what was wrong and he went to my box and got the [glucose-based energy drink] and gave it to me and it was ok... My friends said Mr. Simms was just sort of staring and he didn t move. 2

3 High blood glucose levels (hyperglycemia) can also be dangerous and need to be controlled through the administration of insulin to avoid serious short and long term health risks. Insulin allows the cells in the body to use glucose for energy. Without insulin, the body uses fat and muscles as an alternate energy source. Hyperglycemia in the short term can affect a student s ability to learn. As one student says, When my blood sugars are high, I can t concentrate on my work and my vision gets blurred. Over the long term, high blood glucose levels that are not properly treated increase the risk of long term complications such as neuropathy, retinopathy, cardiac disease, stroke, kidney failure and amputation. Extremely high blood glucose levels due to a lack of insulin can lead to diabetic ketoacidosis (DKA). DKA occurs when blood glucose levels remain too high for too long. DKA is a medical emergency that can necessitate hospitalization; it can cause irregular breathing, stomach pain, nausea, vomiting, sleepiness and possibly death. Studies demonstrate that children with fewer restrictions on self-care behaviors (such as those who are allowed to self-administer insulin) are better able to control their diabetes. A lack of flexibility not only correlates to poor maintenance of diabetes, but is also a substantial source of anxiety to the student. These studies indicate that self-treatment is important because it allows the student to quickly and conveniently monitor glucose levels and administer treatments. The flexibility to self-treat in the classroom or outside of the classroom in a private setting decreases student anxiety and correlates with improved diabetes management. Professor Ed Kraus teaches law students to represent children with diabetes. WHAT WE DO AT IIT CHICAGO-KENT The Health and Disability Legal Clinic at IIT Chicago-Kent College of Law provides pro bono advice and represents families with school-age children who have diabetes. Professor Ed Kraus, an experienced disability rights and public benefits attorney, and Sarah Blenner, Director of the Center for Diabetes Research and Policy, participate in negotiations between school boards and parents in an effort to ensure that appropriate accommodations and services are in place so that a student with diabetes is safe and fully able to participate in and benefit from school. As part of this process, Professor Kraus, Ms. Blenner and trained IIT Chicago-Kent law students help families develop individual, written plans that will ensure their child s safety and appropriate educational experience (called Section 504 plans ), attend meetings with school district personnel about how to develop and implement these plans, provide legal and factual information to school districts and their legal counsel about the rights of children with diabetes and, when necessary, represent families in litigation against the school district at administrative hearings or in civil court. The Health and Disability Legal Clinic also works closely with the American Diabetes Association and other stakeholders to help educate parents and diabetes advocates about the rights of students with diabetes and legal issues surrounding diabetes care in schools. Representative Cases We ve Handled Amir When Amir asserted his legal rights, his school retaliated against him by attempting to transfer him to another school mid-year. Advocates at IIT Chicago- Kent wrote a letter to Amir s school outlining his legal rights and threatening legal action. The school rescinded the transfer and allowed him to finish the academic year at his school. Clara Clara s school claimed the Illinois Nurse Practice Act prevents it from training laypersons to provide her with diabetes-related care. Advocates from IIT Chicago-Kent attended a meeting with Clara s parents and her school where they convinced the school to allow the training of staff volunteers by a certified diabetes educator. This ensured that someone who knew how to care for Clara would always be on the premises. Max Max s school made serious errors in his care stemming from their failure to properly train staff, refusal to follow his physician s orders in the event of an emergency and refusal to communicate with his parents. Advocates from IIT Chicago-Kent opened the channels of communication, argued that federal law and state law required the school to provide additional accommodations for the child and convinced the school to provide specialized diabetes training to the school nurse and staff volunteers. 3

4 A joint study by the University of Connecticut Health Center and the Yale University School of Medicine found that the proper management of glucose levels significantly decreases the risk for developing diabetes-related complications later in life. Sometimes, however, schools do not handle students with diabetes appropriately. Kara, a 9 year old with diabetes, was having a hypoglycemic reaction in her reading class, and when she told her teacher, he refused to let her leave until 45 minutes later. When Kara got to the nurse s office she was intermittently losing consciousness and could not tell the nurse that she needed medication. The school eventually called Kara s grandmother who came to the school and told them to get her to a hospital. Meanwhile, Kara went without the simple care she needed glucose from a juice box or glucose tablets for nearly two hours. Issues have also arisen with respect to students use of insulin pumps. Insulin pumps, which are about the size of a pager, function much like an external pancreas. The pump is typically worn the majority of the day and only removed for special circumstances, such as swimming or showering. The pump is connected to the body through a tube and delivers insulin directly into the blood stream continuously throughout the day, helping keep blood glucose levels in the desired range. The pump can be programmed to deliver a larger dose of insulin to the body when eating and can be adjusted depending on food intake or high blood glucose levels. As one high school student described it, the pump is my whole life on my side. In one case, the blood glucose level of Hassam, a 16-year-old junior in high school, began... the pump is my whole life on my side. to reach a dangerous level. His pump, which was attached to his hip, began beeping to inform him of this. Hassam reached down to turn off the alarm. However, the substitute teacher, believing that Hassam had a cell phone, grabbed the device, pulling out the tubing from under the skin of Hassam s stomach and disconnecting the insulin pump. Hassam is not the only student whose insulin pump has been confiscated during school hours. A middle school assistant principal made a student turn over her insulin pump in the cafeteria because the assistant principal believed that it was a pager. Even though the student wore a medical identification bracelet and even though school officials and the student s parents had worked out a detailed plan for the care of the student at school, the assistant principal kept the insulin pump for at least twenty minutes. As a result, the middle school student became sick later that day and was admitted to the hospital with an infection the next week. The event was so traumatic to the student that she did not return to using the insulin pump even two years later and instead opted to self-administer shots of insulin up to eight times a day. When her parents took legal action against the school, a settlement was reached which included a $10,000 payment to the family and an agreement to provide educational training to principals and staff who have regular contact with children who have diabetes. School staff and administrators have retaliated against families when they attempted to assert their children s legal rights. School principals have threatened to transfer children to another school, teachers have marked students grades down for missing school due to their diabetes care and derogatory rumors have been spread, including articles in local newspapers which make it appear that the families who assert their rights are being unreasonable. Schools have failed to 4

5 implement plans to ensure a child s safety or have retracted promises they made to properly train staff and administrators. Many children with diabetes have experienced discrimination in school. Often they feel like they have nowhere to turn. This tragic fact led IIT Chicago-Kent College of Law to establish a pro bono legal project to help families negotiate with schools, assert rights in the courts and educate state legislators about the needs of children with diabetes. The IIT project has established a relationship with the American Diabetes Association and has recommended policies for schools to adopt. FEDERAL LAW Three federal laws provide the foundation for the protection of students with diabetes. Section 504 of the Rehabilitation Act of 1973 (Section 504) prohibits publicly-funded entities from discriminating against students with qualifying disabilities, including diabetes. If a private school receives federal funds for food and nutrition programs, this is usually sufficient to require the private school to comply with Section 504. The Americans with Disabilities Act and the Americans with Disabilities Act Amendments Act (collectively, ADA) prohibit discrimination in public schools and also protect students in most private schools, except for religious schools that receive no federal funding. The Individuals with Disabilities Education Act (IDEA) places an affirmative requirement on schools to provide special education and related services to students with mental or physical disabilities that significantly interfere with learning. The U.S. Department of Education has adopted implementing regulations that explain in more detail what Section 504 requires. These regulations provide that [n]o qualified handicapped person shall, on the basis of such handicap, be excluded from participation in, be denied the benefits of, or otherwise be subjected to discrimination under any program or activity which receives Federal financial assistance. These regulations require that a public elementary or secondary program or activity that receives federal funding provide a free appropriate public education to each qualified handicapped person in its jurisdiction. Under Department of Education regulations, an appropriate public education is regular or special education that is designed to meet the needs of a student with a disability as adequately as the needs of students without disabilities are met. Private schools are also typically required to make reasonable accommodations for students with diabetes. Using similar language, Title II of the ADA prohibits discrimination by a public entity, stating that no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any such entity. Title III of the ADA prohibits discrimination in places of public accommodation, which includes private schools, stating that no individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation. The implementing regulations for the ADA require public schools (under Title II) and private schools that are not owned by a religious organization (under Title III) to make reasonable modifications to their policies to avoid discrimination on the basis of disability, unless the modifications would fundamentally alter the nature of the service, program, or activity. For example, in a case where a daycare program operated by a school district was asked to train staff members to operate the blood-glucose meter and insulin pump of a student with diabetes, a court stated that the training of staff would likely be found to be a reasonable accommodation. If school officials know or have reason to know that a child might qualify under Section 504 or the ADA, or if a parent asks for a meeting or evaluation of the child s needs, the school has the duty to determine if the child qualifies for accommodations or services. A school must also attempt to identify and locate any child in the school s jurisdiction that would qualify under Section 504 and must inform the child s parents of their rights. Under the Section 504 implementing regulations, children with diabetes are entitled to supplementary aids and services even if the diabetes does not affect their ability to learn. In the academic context, supplementary aids could include extra time on tests, make-up assignments, and tutoring. For health-related needs, services that schools may be required to provide include a means for students to check their blood glucose level and receive their needed medications during the school day. While the school may decide who to designate to administer insulin, failing to ensure that those specified people, whether they are health care professionals or trained persons, are available may violate Section 504. IDEA requires public schools to provide special education and related services to students with disabilities that significantly interfere with learning and has a much narrower scope than either the ADA or Section 504. Children fall under the protection of IDEA if they have mental retardation, sensory impairments, serious emotional disturbances, orthopedic 5

6 impairments, other health impairments (including diabetes) or specific learning disabilities, and the child needs both special education and related services because of these impairments. Students with diabetes are more likely to be found eligible under IDEA if they have serious learning or physical disabilities beyond diabetes and therefore need special education services. For example, a New Jersey court found that a child with type 1 diabetes and no further disabilities did not qualify for protection under IDEA. However, even if a child s sole impairment is diabetes, the child may qualify under IDEA if the diabetes causes him or her to have limited strength, vitality or alertness and the diabetes adversely affects the child s educational performance. Protecting the Rights of Students with Diabetes: OCR and DOJ Parents of school children can go to a court to enforce their rights. As an alternative to traditional litigation parents can also contact the Office for Civil Rights (OCR) of the U.S. Department of Education and the U.S. Department of Justice (DOJ). Parents can file a complaint with OCR to enforce their rights under the ADA and Section 504. Parents can also file a complaint with DOJ to enforce their rights under the ADA. In some instances another agency, such as OCR, may direct a complaint to DOJ. The DOJ cases generally involve systemic discrimination, whereas OCR s cases typically address a single school district. In addition to enforcement mechanisms provided by DOJ and OCR, both the ADA and Section 504 can be enforced through litigation. Even if DOJ or OCR decides against a party, the party can still pursue a remedy through litigation. Despite the federal laws prohibiting discrimination against students with disabilities, students still experience problems. Enforcement through administrative complaints and litigation has limitations. OCR only investigates and resolves complaints on a case-by-case basis and this limits its ability to eliminate HOW TO INITIATE A COMPLAINT WITH THE OFFICE FOR CIVIL RIGHTS The Office for Civil Rights (OCR) is an agency of the U.S. Department of Education. OCR has enforcement offices located in twelve cities, including Chicago. To file a complaint, parents or guardians should contact the office serving their local area, which they can locate by looking at OCR s website ( ed.gov/ocr/) or by contacting the Washington, D.C. office at A complaint may be filed with OCR on behalf of a student or group of students with diabetes when it is believed that a school that receives federal funding has discriminated against the student or group of students. The complaint must be filed with OCR within 180 days of the date of the alleged discrimination. Although it is not required, OCR suggests that a potential complainant may want to use the school s grievance process before filing a complaint with OCR. If the school s grievance process is used, a complaint to OCR must be filed within 60 days of the last action of the grievance process. A complaint to OCR must contain: contact information for the complainant; name and location of the school; information about the person injured; and a description of the discriminatory act detailing what occurred and when. After receiving the complaint, OCR evaluates the complaint to determine whether it has the legal authority to investigate the complaint, whether the complaint is timely filed and whether the complaint has alleged facts that, if true, would constitute a violation of one of the laws OCR enforces. If OCR determines that these criteria are met, it will open the complaint for investigation where it will act as a neutral fact finder and collect relevant evidence detailing the events of the complaint. If OCR determines that a preponderance of the evidence supports a conclusion that the school failed to comply with the law, OCR will attempt to negotiate a voluntary resolution agreement with the school. Such a resolution outlines the specific actions the school must take in order to comply with the applicable civil rights laws. If, however, the school refuses to negotiate with OCR, OCR will issue a Letter of Finding to the parties providing a factual and legal basis for a finding of non-compliance, and give the school 30 days to indicate a willingness to participate in a voluntary resolution. If the 30 day period passes without positive steps taken by the school, OCR will issue a Letter of Impending Enforcement Action, and give the school an opportunity to submit to voluntary negotiations. At this stage, OCR will either initiate administrative enforcement proceedings to curb federal assistance to the school or will refer the case to the Department of Justice for further action. systemic discrimination. Some families cannot afford the time and expense of pursuing a case through administrative remedies or litigation. In addition, these enforcement mechanisms are reactionary and require a discriminatory act on the part of the school before action can be taken. 6

7 THE ILLINOIS CARE OF STUDENTS WITH DIABETES ACT State laws that are specific to students with diabetes can and do provide an alternative solution to the issues that students with diabetes face in the school setting. Professor Ed Kraus, Professor Lori Andrews, Sarah Blenner and IIT Chicago- Kent students worked with families and diabetes advocates to draft a model law called the Care of Students with Diabetes Act and to educate legislators about the need for this important legislation. Representative Tom Cross and Senator Heather Steans provided essential leadership for the passage of the Illinois Care of Students with Diabetes Act (Care Act), which became effective on December 1, The Care Act provides additional protections to school children with diabetes attending all elementary and secondary schools in Illinois, regardless of the schools religious affiliation or source of funding. For the text of the Care Act, visit html and click on the Illinois Care of Students with Diabetes Act link. Why State-Level, Diabetes-Specific Legislation is Necessary Diabetes-specific state laws clearly set forth the rights and responsibilities of all parties parents, students, teachers and administrators. The rights and responsibilities required under federal laws can be ambiguous and application and enforcement can vary from district to district and school to school. State laws that specifically apply to children with diabetes reduce arguments about how to apply the more general laws, such as Section 504. Diabetes-specific state laws help remove disparities between the way students with diabetes are treated in different schools or school districts. By creating laws that address the core reasons why school employees or school boards do not properly treat or accommodate students with diabetes, the state laws systemically combat the discrimination. Since school officials are sometimes uncertain about how the broad federal mandates protecting people with disabilities apply to children with diabetes, diabetes-specific state laws, like the Illinois Care of Students with Diabetes Act, provide guidance to address the problems that students with diabetes face in the school setting. Before the Care Act, some school officials and nurses asserted that Illinois law prohibits laypeople from administering insulin and glucagon. They argued that the Illinois Nurse Practice Act states that nurses cannot delegate to unlicensed people nursing activities (defined as work that requires specialized knowledge gained from nursing programs), including medication administration. However, checking blood glucose levels and administering insulin and glucagon, while requiring training, do not require specialized knowledge that can only be learned in nursing school. Parents, siblings, babysitters and the children themselves can be trained to check blood glucose levels and administer insulin. Any willing layperson can be trained to check blood glucose levels quickly and easily by a nurse, a physician or any number of qualified diabetes educators. The medical community at large agrees that non-nurses can play an instrumental role in effective diabetes management at school. The Illinois Care of Students with Diabetes Act authorizes delegated care aides to help care for a child with diabetes during the school day. Delegated care aides are nonnurse school employees who volunteer 7

8 and are properly trained to manage a specific child s diabetes. These properly trained non-nurse school employees can check blood glucose levels, administer medication and supervise the selfadministration of diabetes-related medication in Illinois schools, giving Illinois school children the opportunity to attend school safely even when a nurse is not available. Independence and Self-Management The Illinois Care of Students with Diabetes Act makes it clear that children who are authorized by their health care provider to self-manage their diabetes are permitted to do so wherever and whenever necessary. This includes checking blood glucose levels, responding to hypoglycemia or hyperglycemia and administering medication. The law is part of a national trend to protect school children with diabetes by allowing selfmonitoring or oversight of monitoring by school employees. At least 19 states, including Illinois, now have laws that allow students with diabetes to perform some degree of self-care at school. Frequent monitoring of glucose levels, insulin dosing and nutritional intake is crucial in the management of diabetes. Students may need to check their blood glucose before tests or exams, as blood glucose levels can affect cognitive functioning. A student can prick his or her finger with a lancet, place a drop of blood on a test strip, insert the strip in a blood glucose meter and get an accurate result all in about a minute without missing class or causing a disruption. Checking blood glucose levels in the classroom does not pose a risk of spreading blood borne pathogens. The American Diabetes Association s Safe at School training video shows how unobtrusive such monitoring is: Children of different ages vary in their ability to self-manage and the policies related to self-management should be adjusted accordingly. For younger children, it is important to begin building skills related to the selfmanagement of the disease. Younger children may have more difficulty recognizing signs of high and low blood glucose levels and often need additional supervision. As children get older, they are increasingly able to check their own blood glucose levels and administer their own insulin, but may still need adult supervision. They also become better able to understand how food choices and activity levels will affect their blood glucose. By the time children reach middle school and high school they are generally self-sufficient in the management of their disease, but they will still need assistance if they experience severe hypoglycemia. Students preferences and abilities should be taken into account when determining where the diabetesrelated care will take place. Some students may wish to test their blood in the classroom, right at their desks. A complaint filed with OCR against a California school district on behalf of a 6th grade student and an 8th grade student resulted in an agreement requiring that those students be allowed to test their blood glucose levels in the classroom. If students are not allowed to self-manage their disease in class, they must go to the nurse s office several times each day causing them to miss class and sometimes they must travel to the nurse s office when they are experiencing dangerous glycemic symptoms, such as dizziness or disorientation. Some students may prefer a private location in which to perform their care and this preference should be respected. In certain cases legal action has been required to secure this right. A complaint filed with OCR against the Onslow County School District in North Carolina resulted in the school district agreeing to maintain a private place for a student to conduct diabetes care. Delegated Care Aides: Filling the Gaps in Nursing Coverage Consistent with the recommendations of experts in diabetes care and all available empirical evidence, the Illinois Care of Students with Diabetes Act permits the use of delegated care aides. A delegated care aide is defined by the Care Act as a school employee who has agreed to receive training in diabetes care and to assist students in implementing their diabetes care plan and has entered into an agreement with a parent or guardian and the school district or private school. Under the Care Act, delegated care aides are trained to perform the tasks necessary to assist students in accordance with their diabetes care plans. This training includes information on checking blood glucose levels, recognizing and responding to the symptoms of hypoglycemia and hyperglycemia, estimating the number of carbohydrates in snacks and lunches, checking ketones and administering medication. When properly trained, delegated care aides are permitted to administer both insulin and glucagon to a child with diabetes. These delegated care aides are crucial to maintaining a safe environment for school children with diabetes. The Care Act is part of a movement across the country to ensure children can attend school safely. At least 19 states implicitly or explicitly permit the administration of insulin by nonmedical personnel in schools. As for glucagon, at least 34 states explicitly or implicitly permit the administration of glucagon by nonmedical personnel in schools. 8

9 TRAINING FOR NONMEDICAL PERSONNEL The National Diabetes Education Program (NDEP), a partnership of the National Institutes of Health, the Centers for Disease Control and Prevention and over 200 partner organizations, supports the practice of nonmedical personnel being trained to provide aid and oversight for children with diabetes in school. Allowing unlicensed but properly trained individuals to be involved in the health care management of a child with diabetes is neither a new approach nor one that exposes the district to new and unforeseen liability. The NDEP publication Helping the Student with Diabetes Succeed, A Guide for School Personnel, Publication NDEP-61 (2010) details how unlicensed individuals can serve as diabetes care aides in schools. The Guide states that Diabetes management training for school personnel is essential to facilitate appropriate care for students with diabetes. Knowledgeable and trained school personnel can help to ensure that students with diabetes are safe, ready to learn, and able to participate in all school-sponsored events. All school personnel should receive the appropriate level of diabetes care training suited to their responsibilities for students with diabetes. Diabetes management training should be facilitated by a diabetes-trained health care professional such as the school nurse or a certified diabetes educator. Training should occur at the beginning of each school year and should be repeated when an enrolled student is first diagnosed with diabetes or when a student with diabetes enrolls in the school. Periodic refresher training is recommended. According to the Guide, Three levels of training are needed to keep students with diabetes safe at school. These levels include: Helping the Student with Diabetes Succeed A Guide for School Personnel U.S. Department of Health and Human Services Level 1. Diabetes Overview and How to Recognize and Respond to an Emergency Situation. This level of training is for all school personnel. Level 2. Diabetes Basics and What to Do in an Emergency Situation. This level of training is for school personnel who have responsibility for the student with diabetes throughout the school day. Level 3. General and Student-Specific Diabetes Care Tasks. This level of training is for school staff who have been identified as delegated care aides. Updated Edition 2010 A Joint Program of the National Institutes of Health and the Centers for Disease Control and Prevention Most physicians routinely include glucagon as treatment for severe hypoglycemia in a child s health care plan. The National Association of School Nurses has recognized that school staff must be trained and available to administer glucagon in order for a student with diabetes to be medically safe at school. One reason that the enactment of state laws protecting school children with diabetes was necessary was that, prior to such laws, children were in danger. Rather than making sure that several school personnel had been trained to administer glucagon, some school officials instructed school employees to do nothing until the child s condition worsened and then call 911. But ambulances get stuck in traffic or might be busy with other emergency calls. No matter how rapid a 911 response might be, even a few minutes without glucose or oxygen could damage the brain and other organs. Relying on 911 and refusing to administer glucagon could result in a delay that would most likely cause the child to have a seizure, stop breathing or become unconscious, all of which can lead to brain damage or death. While having a school nurse in every school in the country is desirable, it is not economically feasible nor are there enough nurses to place a nurse at every school. Even when schools are fortunate enough to have a nurse, situations arise where the nurse misses a day of work, is not available while caring for other children, is not available while taking a regularly scheduled break or cannot accompany the student on a field trip or at an extracurricular activity. The only reliable way to ensure children with diabetes are safe at school is to train staff and administrators to assist the child with routine diabetes tasks or in the event of an emergency. As the American Diabetes Association points out, the care provided by trained nonmedical personnel does not replace the care provided by the school nurse, but supplements school nurse care which is absolutely critical for a child with diabetes. Just as parents, babysitters, daycare workers, siblings and the children themselves are trained in diabetes care, school personnel can and should also be properly trained. Training Caring for a child with diabetes and overseeing self-management of diabetesrelated needs for students can be best accomplished through a team approach. In addition to the individualized training for delegated care aides, the Illinois Care of Students with Diabetes Act requires that all school staff be trained to recognize symptoms of high and low blood glucose levels. Select staff, such as those having custodial care of the child during the school day, should be able to respond to symptoms of high and low blood glucose levels and be able to react in the event of an emergency. The presence of properly trained personnel on staff at schools is important not only to facilitate proper management of the disease, but it is also vital to develop self-management skills in adolescence. Researchers at the National Center for Chronic Disease Prevention and Health Promotion at the Centers for Disease Control and Prevention performed a systematic review of the literature surrounding school personnel s diabetes education level and found that the majority of school personnel have an inadequate understanding of diabetes. Scientific knowledge of and medical treatments for diabetes have changed drastically, even over the last decade. It is essential that a school provide diabetes 9

10 training on a regular basis to school personnel to avoid the immediate health risks of low blood glucose and to maintain blood glucose control that will minimize the risk of future complications. Diabetes training and education must target school personnel who interact with the student, such as school administrators, school nurses, teachers, coaches, health aides, bus drivers, secretaries and others. Educating school personnel about diabetes will benefit students, the school and the community. Training volunteer staff and administrators will result in better long term outcomes for these children and will reduce health care expenses for society. Studies indicate that students who attend a school with personnel trained in diabetes management show better diabetes control than those students who attend schools without properly trained staff. Training volunteer staff and administrators can be done for little cost or frequently at no cost to the school. Relying solely on nurses to provide or supervise the care of children with diabetes detracts from students who have needs that can only be addressed by health care workers. At least 17 states have statutory provisions or administrative regulations regarding diabetes-related training programs for school employees. Several additional states have statutory provisions or administrative regulations regarding training school employees on the care of chronic illnesses more generally, which by nature of a chronic illness should include diabetes training. These statutes address various issues of educational training including the minimum number of people trained, the topics covered during training, which employees are trained, who should conduct the training, the frequency of trainings and whether the sessions are mandatory for the school to provide or required for employees to attend. Assuaging Liability Concerns for Teachers Schools, staff and administrators may be concerned with increased liability if they administer medication or otherwise assist with a student s diabetes care. However, the Illinois Care of Students with Diabetes Act has protections for schools and school employees built into the law. The Care Act provides civil immunity for schools and both civil immunity and protection from disciplinary proceedings for school employees if there is a harm that results from conduct related to the care of students with diabetes, unless the conduct was willful and wanton. Further, under the doctrine of in loco parentis, schools and teachers stand in the place of parents and are responsible for students under their care. CHARTING A NEW COURSE FOR DIABETES POLICY The IIT Center for Diabetes Research and Policy takes a holistic approach to diabetes policy. Professor Ed Kraus and Sarah Blenner are continuously working to implement the Illinois Care of Students with Diabetes Act (Care Act) and to raise awareness about the accommodations school children with diabetes need. Despite the federal disability laws and Illinois law, some children in Illinois still face discrimination. Professor Ed Kraus and Sarah Blenner, working with law students and other IIT Chicago-Kent faculty, frequently deal with cases where children with diabetes were discriminated against. In the face of criticism of the Care Act and novel legal questions, attorneys at the Center for Diabetes Research and Policy have fielded Professor Lori Andrews discussing policy issues many calls, drafted letters, developed workshops, answered questions and weighed in on behalf of families caught in the middle of the political and bureaucratic landscape. Sarah Blenner, Ed Kraus and Lori Andrews also help to create policies to protect people with diabetes from discrimination in the day care, park district, employment and criminal justice settings. They are assessing the social and legal needs of people who participate in human research related to diabetes and analyzing policies such as the grant of patents on human gene sequences that might impede research and innovation in the diabetes field. Many of the legal issues people with diabetes face are complex and require addressing the problems from a variety of angles. The Center for Diabetes Research and Policy promotes and encourages interdisciplinary projects, incorporating the fields of law, biomedical engineering, design, psychology and public health. For more information about the Center for Diabetes Research and Policy s ongoing collaborative projects, visit School districts are liable if they willfully or wantonly disregard a student s safety. Failing to properly train staff or to properly react in an emergency exposes schools to increased liability. To the contrary, following sound health care policy recommendations such as those outlined in Helping the Student with Diabetes Succeed, a collaborative document published by the National Diabetes Education Program, a joint program of the National Institutes of Health and the Centers for Disease Control and Prevention, and supported by the American Diabetes Association reduces liability exposure for schools and school employees. The basis of any sound plan to manage a student s diabetes is the volunteer nature of any participant who will be performing diabetes care other than responding to signs of 10

11 hyperglycemia and hypoglycemia or to an emergency. Under no circumstances can a person be forced to administer medication. The Care Act protects school employees who do not wish to serve as delegated care aides by barring schools from retaliating against these employees. Access to Schools, Field Trips, Extracurricular Activities and Other School-Related Events Under federal laws and the laws in many states, including Illinois, children with diabetes have the right to safely and fully participate in school and all school activities, including field trips and extracurricular activities. The Illinois Care of Students with Diabetes Act states: A school district shall not restrict the assignment of a student with diabetes to a particular school on the basis that the school does not have a full-time school nurse, nor shall a school deny a student access to any school or school-related activities on the basis that a student has diabetes. Schools need to develop policies to assure that students with diabetes can participate fully and safely in all school activities. In many situations, this will mean having a nurse or delegated care aide available to help a child manage his diabetes (including glucagon administration) before or after regular school hours. Parents should not be required to attend field trips or extracurricular activities in order for their child with diabetes to attend the field trips and participate in extracurricular activities. An advisory letter dated January 25, 2013 and written by the Acting Assistant Secretary for Civil Rights of the U.S. Department of Education makes it clear that schools and school districts must allow otherwise qualified students to participate in extracurricular activities, such as sports. The letter provides guidance to schools and school districts about the participation of students in sports and other extracurricular activities. The letter makes it clear that schools must accommodate individuals with qualifying disabilities by making reasonable modifications and providing those aids and services that are necessary to ensure an equal opportunity to participate, unless the school district can show that doing so would be a fundamental alteration to its program. Students with diabetes should be afforded an equal opportunity to participate in the educational curriculum, field trips, extracurricular activities and sports. DEVELOPING DISTRICT POLICIES AND INDIVIDUALIZED PLANS Schools and school districts should adopt policies to ensure compliance with the requirements of Section 504, the ADA and the Illinois Care of Students with Diabetes Act, and to ensure that the rights of students with diabetes are protected. Schools and parents should also develop written plans that clearly outline the specific accommodations the individual child with diabetes needs at school. Each student with diabetes is unique and therefore accommodations will vary from child to child. Students with diabetes will need to manage their condition at school just like they manage their condition at home. Accommodations should be considered not only for regular school days, but should also be considered for both field trips and extracurricular activities. Schools and families should consider a broad range of accommodations for the care tasks, such as: monitoring blood glucose levels, testing blood or urine for ketones, administering insulin, administering glucagon, counting carbohydrates, eating snacks, drinking water and accessing the bathroom. Students should have unlimited access to snacks, water and the bathroom. When appropriate, students should be allowed to leave the classroom to see the nurse or other trained personnel. Some students are fully capable of self-managing their condition, while others rely on trained personnel to administer or supervise medication administration. Responsible personnel, such as delegated care aides, should be identified in a written plan. School staff should understand the symptoms of hypoglycemia and hyperglycemia to help facilitate the appropriate treatment or contact a designated person at school who can help the student treat the out of range blood glucose levels. Students should not be penalized for absences or tardiness due to diabetesrelated management, illness or doctor appointments. Because students with diabetes may miss a lot of class time while caring for their diabetes, they may need academic accommodations, such as access to a note taker, additional educational instruction, or extra time completing assignments or make up work. Accommodations for academic tests including regular, district and statewide assessments are also important to consider for a student with diabetes. If a child s blood glucose levels are out of range, the student may not be able to perform as well on a test because of an inability to concentrate or think clearly. Additionally, a student may need access to supplies during a test or need to access the bathroom or water fountain. Students should be able to access their supplies and treat their diabetes without being penalized on the test. Finally, emergency situations, such as lock downs or emergency evacuations, should be considered in a written plan as well. In addition, there are other accommodations that schools and families should consider. For example, students with diabetes may wish to carry mobile phones to reach their parents, guardians or health care provider if necessary. Some students or families may benefit from using mobile applications during the school day, such as MyCareConnect, which uses smartphone or tablet platforms to centralize and increase communication between school officials, parents and a student with diabetes. 11