Reprinted with permission of the American Diabetes Association.
Volume 12 Number 4, 1999, Page 230
From Research to Practice / Diabetes Advocacy
Advocating for the Child With Diabetes
William L. Clarke, MD
This article reviews the American Diabetes Association's position statement titled "Care of Children With Diabetes in the School and Day Care Setting," as well as the legal supports for such management. Specific examples of how parents and others encountered barriers and resolved conflict are presented, and suggestions are given for participation in the advocacy process. Areas for future advocacy activities are also discussed.
Diabetes care for children has changed dramatically over the past several years. The introduction of self-monitoring of blood glucose, insulin infusion pumps, rapid-acting insulin, carbohydrate counting, and glycosylated hemoglobin analyses has given pediatric health care professionals a new arsenal of weapons with which to treat and assess blood glucose levels in children with diabetes.
The need to control blood glucose levels in children has been affirmed by the results of the Diabetes Control and Complications Trial (DCCT).1 Because children under 13 years of age did not participate in the trial, no conclusions regarding blood glucose control and the risk of developing microvascular complications could be made for them. Adolescents, however, did participate in the trial, and the findings in their age-group matched those in adults.2 Near-normal blood glucose control reduces the risk of diabetic complications.
The American Diabetes Association (ADA) does not recommend tight glucose control for children <2 years of age and suggests that caution should be exercised when controlling blood glucose levels in children <7 years of age since hypoglycemia can impair brain development.3 Preadolescents appear to be protected from microvascular complications; thus, the need for tight control in these children might not be as great as it is for adolescents. However, those who have raised or taught children can affirm with reliability the importance of early instruction and practice of good habits to the eventual and continued practice of those behaviors during adulthood. Thus, although the absolute need for tight glucose control may not be medically required for pre-teens, a practical response to the findings of the DCCT requires the early initiation of self-management activities that emulate those of older patients, even if the target blood glucose goal is somewhat higher.
As a consequence, when children with diabetes go to school, they are now acknowledging and attending to their medical management. Most school-aged children spend nearly half of their waking hours under the supervision of the school system, and many receive breakfast, lunch, and at least two snacks at school. In addition, it is not uncommon for school activities to constitute the major social and physical endeavors for children. Controlling diabetes means controlling blood glucose levels during the school day. There is no alternative.
It is important to recall that even before the publication of the DCCT results, pediatric diabetes health care providers were aware of studies that demonstrated the deleterious effects of symptomatic and asymptomatic hypoglycemia on cognitive functioning. Children with early onset (<7 years old) diabetes have been shown to have diminished cognitive motor function, which correlates with retrospective recalls of the number of severe hypoglycemic episodes.4-6 Children with asymptomatic hypoglycemia were also shown to have significant cognitive deficiencies.7 Even mild hypoglycemia (55 - 65 mg/dl) can be associated with a significant reduction in cognitive functioning in school-aged children.8,9 Clearly, there is a relationship between mental and motor functioning and hypoglycemia. In addition, maintaining blood glucose levels in the near-normal range maximizes the child's growth potential and can contribute to a sense of well-being.
Thus, all current evidence supports the need to control children's blood glucose levels with some degree of rigor throughout the school day, not only to prevent future microvascular complications, but also to protect the developing brain from the insults of recurrent hypoglycemia. Assuring children with diabetes the benefit of diabetes management and protection from hypoglycemia throughout the school day is probably the most important and most publicized area of advocacy for children.
This article reviews the ADA's position statement titled "Care of Children With Diabetes in the School and Day Care Setting,"10 as well as the legal supports for such management. Several specific examples of how parents and others encountered barriers and resolved conflict are presented, and suggestions are given for participation in the advocacy process. Finally, areas for future advocacy activities are suggested.
ADA's Position Statement
Earlier this year, the ADA affirmed and published a position statement with regard to the care of children while at school or day care.10 That document describes three important general guidelines. First, an individualized diabetes care plan should be developed in consultation with the parent, diabetes care team, and school personnel. The plan, a sample copy of which is shown in Figure 1, should include instructions regarding blood glucose monitoring frequency and circumstances; insulin administration; content, amount, and timing of meals and snacks; symptoms and treatment of hypoglycemia (including the use of intramuscular glucagon); and the symptoms and treatment of hyperglycemia (including testing for urinary ketones). Second, the responsibilities of the parents and the school should be carefully and completely described. Finally, the statement delineates age-specific and age-appropriate expectations of children with diabetes.
Figure 1. Diabetes Care Plan. Reprinted with permission from American Diabetes Association: Position statement: Care of children with diabetes in the school and day care setting. Diabetes Care 22 (Suppl 1): S94-97, 1999.
It is hoped and anticipated that this position statement will be widely disseminated and embraced by health care providers, school personnel, and parents of children with diabetes. All health care personnel providing care for children with diabetes need to become familiar with the contents of this short but concise and complete document and refer to it when communicating with parents and school personnel. Advocating for a uniform and consistent policy will always be more productive than attempting to rally support for a variety of positions that may benefit only a few students and be difficult for schools to implement.
What Do Parents Want From Their Children's Schools?
First and foremost, parents want their children to be safe from physical harm when they are apart from them. Secondly, parents expect that their children will benefit from their educational experiences to the best of their ability to learn. For children with diabetes, this means that every attempt should be made to ensure that a child does not experience severe hypoglycemia or hyperglycemia, and that, if either of these occur, it is treated immediately and appropriately. The children's medical needs, including blood glucose monitoring; administration of insulin and glucagon; snacking in the classroom and scheduling lunch; the right to carry rapid-acting glucose tablets; and scheduling of physical activity must all be adequately addressed to ensure that children with diabetes receive an education concurrent with their ability to learn.
In our multidisciplinary clinic, an educational consultant is part of the health care team. She evaluates the needs of children during the school day and communicates those needs to their school systems. Periodic follow-ups occur outside the clinic setting to ensure that children are benefiting from their educational experience.
What Are the Legal Supports for Children With Diabetes at School?
Three federal laws are used to support requests for providing a medically safe and educationally appropriate academic environment: Section 504 of the Rehabilitation Act of 1973, the Individuals With Disabilities Education Act (IDEA), and the Americans With Disabilities Act.11-13 The procedures for identifying children with disabilities, the requirements for developing educational plans, the involvement of parents in the plan, and the procedural safeguards are different under each law. Interpretation of these laws is complex, and a discussion of their fine points is beyond the scope of this article. The ADA publishes a pamphlet titled "Your School and Your Rights" that provides a succinct guide to each of these laws. In addition, cooperative school officials should be able to provide guidance as to the intricacies of these acts and which is appropriate for a particular situation.
How to Negotiate Legal Protection
The first step that should be taken to ensure protection of a child with diabetes is a meeting between school officials and parents. Parents should be encouraged to consult with school officials upon enrolling their child into a school system and to request yearly updating conferences. Parents should discuss what is needed to manage their child's diabetes while the child is at school and, if necessary, explain the legal rights that guarantee such protection. The ADA position statement described above brings together the legal and medical aspects of managing children's diabetes while they are in school or day care settings. It includes an overview of areas for which parents, children, and school officials should each assume responsibility.
If an agreement cannot be reached between parents and school officials, it may be necessary to take concerns to the school board or to the state or federal Department of Education. Legal action may be necessary if an appropriate agreement cannot be reached between parents and school officials.
Support from the ADA's Government Relations and Advocacy office is available for consultation and referral in many cases. The ADA was a party in lawsuits brought against Kinder-Care Learning Centers, Inc., and La Petite Academy, Inc.14,15 Agreements in these cases resulted in greater access to private day care and better management for children with diabetes. In addition, the ADA has successfully intervened on behalf of numerous families to help educate school administrators on the appropriate needs of kids with diabetes. Finally, the ADA is currently conducting an online discrimination poll at www.diabetes.org/poll. This poll gives people who have experienced all types of discrimination as a result of diabetes the opportunity to help others by sharing their stories. Please feel free to take part in this poll and also to direct your patients to this opportunity.
It takes a concerted effort from parents, children, school officials, and health care professionals to ensure that the legal rights of children with diabetes are protected. Only after the basic medical needs are provided can children with diabetes have access to quality education.
Examples of Advocacy
Following are two examples of parent-initiated advocacy for children with diabetes in two different yet contiguous school districts within the Commonwealth of Virginia.
Example 1. The parents of a 6-year-old boy whose diabetes is controlled with two injections of insulin daily and an exchange meal plan, and a monitoring routine of 4–5 blood glucose tests per day met with the local elementary school personnel to discuss monitoring their child for hypoglycemia and administering appropriate therapy to restore euglycemia. The parents were told that the child can perform self-monitoring of blood glucose at the school in the office and that rapid-acting glucose can be available for treatment.
These parents, whose child had already had at least one severe hypoglycemic event in the past, requested that intramuscular glucagon be kept at the school and administered to their child should he lose consciousness. The school personnel stated that they were not permitted to administer any intramuscular medication but would call 911 for the emergency rescue service should the child lose consciousness or have a seizure.
The school district is rural, and response time for emergency medical technicians could be longer than 30 minutes. The parents objected to this decision and were referred to the superintendent of schools, who explained the school district's policy as set forth by the local school board.
At this point, the parents requested a letter from the child's physician describing the principles of childhood diabetes management and specifically the treatment of moderate and severe hypoglycemia. The letter stated unequivocally that the use of intramuscular glucagon is an appropriate resuscitative treatment that should be used when the child has lost consciousness and that it can be administered safely by nonmedical personnel. The superintendent rejected the letter from the physician and referred the case to the school board.
The school board included at least one member with type 2 diabetes who had never heard of glucagon. The board's initial response was to reject the parents' request, but they agreed to take the request under advisement.
The parents then contacted their local newspapers and asked the ADA to provide information to the school board. The school board was then poised to grant the parents' request, when the director of emergency services for the county, who is an emergency room physician at the local hospital, wrote to the board that glucagon is a dangerous drug and that its administration would significantly interfere with emergency personnel's ability to render treatment for the unconscious child. This information was widely distributed by the local media.
The parents, as well as the assistant superintendent of schools, contacted the child's physician once again and asked him to discuss the use of glucagon with the local emergency room physician. The two physicians met, and the safety of glucagon was affirmed. The emergency services director agreed to respond to calls for children experiencing severe hypoglycemia even if glucagon has been administered.
The school board then met to hear testimony from a number of concerned parents, an adolescent with type 1 diabetes, the child's physician, and the director of emergency services. The board agreed to permit the administration of intramuscular glucagon when needed and consulted with the child's physician regarding a permission form and treatment plan.
The parents were satisfied that their child would be able to attend school in safety. No further incidents occurred during the subsequent 4 years.
Example 2. This second family's story was recently chronicled in two ADA publications, Diabetes Advocacy and Diabetes Forecast.16,17 The family moved to Virginia from California and anticipated that their daughter with type 1 diabetes would safely attend a local elementary school. They met with local school personnel before her enrollment to discuss the medical care she would need during school hours.
They specifically requested and had written physician's orders requesting that intramuscular glucagon be administered to their child whenever her blood glucose got so low that it would be dangerous to treat her with oral rapid-acting glucose. Initially, school personnel agreed to this request even though they recognized that their school did not have a nurse present each day. Shortly thereafter, the family was notified that there had been a change in school board policy and that only licensed medical personnel could administer intramuscular medications. Thus, the child would have to attend school in an unsafe environment.
Ironically, each of the contiguous school districts permitted the administration of glucagon by trained nonmedical staff. The parents appealed the decision to the school board and were told that the Drug Control Act of Virginia forbade the administration of controlled substances by anyone other than a medical professional.
The family met with other parents of children with type 1 diabetes, formed a support group, and solicited letters of support for their request from their physician, other pediatric endocrinologists, and the ADA Government Relations office. The school board requested advice from the physician director of the county's health department. He advised that glucagon is a dangerous drug that should only be administered by trained medical personnel.
Frustrated with their attempts to ensure a safe school environment for their child, who, parenthetically, has never required a glucagon injection, the family met with their local state legislator. This individual requested clarification of the Drug Control Act and the Good Samaritan Act from the state Attorney General's office. The deputy attorney general responded that it was his interpretation that glucagon is a controlled substance under the law and thus can only be administered by medical personnel, but that the Good Samaritan Act might protect nonmedical personnel who administer the injection in a life-threatening situation when medical personnel are unavailable.
The school board asserted that this opinion supported their conclusions. The legislator then submitted a bill amending the Good Samaritan Act to provide immunity from liability for any school board employee within the Commonwealth who administers either insulin or glucagon according to a physician's guidelines to a child with diabetes when no health care professional is physically present at the school.18 The legislation further required schools who have one or more children with diabetes attending to have at least two instructional or administrative personnel trained in the administration of these medications. The state Board of Nursing and the school health advisory boards were directed to recommend procedures for training such individuals.
The new legislation passed both houses of the legislature with no opposition, was signed into law by the governor of Virginia, and took effect on July 1, 1999. This was the first legislation of this type in the United States.
Amazingly, the child's local school board continued to refuse to implement these procedures until the date required by law. This necessitated another round of requests from the parents to physicians and to the ADA for letters decrying the intransigence of this local school board. The parents also contacted attorneys from the U.S. Department of Education's Office of Civil Rights, who agreed to attend meetings of the local school board. Subsequently, the school board decided to immediately hire school nurses for every school in the district attended by a child with diabetes.
Lessons From Advocacy Examples
Who should advocate for children with diabetes?
Parents should always be the primary advocates for their children. The examples given above demonstrate the power of parents to persuade and ultimately demand actions to meet their children's needs. Parents have the legal standing to bring a suit on behalf of their child, if necessary. Parents are also the ones who can most effectively familiarize themselves with the unique health care policies of their own school district. A uniform approach to advocacy, while theoretically attractive, is practically unattainable. In Virginia, for example, there are more than 100 school districts, each with its own school health advisory board and its own school health policies.
Health care professionals who care for children view themselves as child advocates, and indeed the testimony of such experts in child health is invaluable. However, those initiating the process must always be those who have a paternal and vested interest in the safety and health of the child. Health care professionals can and should advise, help develop strategies for interacting with and informing educational personnel, support the parents in their request, and provide timely and accurate expert opinions when asked. Health care professionals can also provide an objective viewpoint to help facilitate compromise, when possible.
Additional individuals may also be recruited to assist in the advocacy process. Experience with the Kinder-Care and La Petite Academy cases has demonstrated the importance of voluntary health agencies such as the ADA that possess knowledgeable staff and volunteers with legal expertise and can provide uniform, published standards of care and guidelines.
Finally, assistance may be found in some unexpected places. In the second example above, a legislator listened to his constituent, investigated, and acted in a timely manner to effect the change that others were unable to achieve. It is important not to underestimate the value and assistance of those who serve in the legislature. Although there are but approximately 125,000 children under the age of 19 years with type 1 diabetes in the United States, the total population with diabetes is estimated to approach 10%.10 Such a large group cannot be easily ignored by those who depend on others to elect them to office.
How should advocacy be conducted?
As demonstrated in the examples, the best advocacy is done with factual material presented in a calm manner. Small group discussions that permit parties to discuss points of disagreement without the need to protect preformed positions are preferable to public confrontations, which often necessitate the re-affirmation of past policies regardless of their basis or content. It is usually best to offer written materials to support one's position, but it is important that the materials be neither inflammatory nor of such length as to preclude easy scanning. Allowing parties to have time to reflect on requests will often facilitate the reasoning process. However, parents must be firm in rejecting policies that place their children in danger or that exclude them from any academic or extracurricular activity. That is their right by law.
After initial conversations, it may be useful to contact other parents who share similar concerns to secure their support and action. It is probably useful also to involve a health care professional with expertise in childhood diabetes to provide expert opinions.
When the negotiating process appears to be deadlocked or proceeding toward an unacceptable conclusion, one should then involve the local media, with the understanding that such involvement will of necessity mean the relinquishment of privacy. Media presentations usually get the attention of other interested parties and can facilitate the inclusion of other, more sophisticated lobbying groups. This may also be the time to initiate consultation with an attorney who has expertise in education and disability law.
How can health care professionals assist in advocacy for children with diabetes?
The most obvious way in which health care professionals can be helpful in the advocacy process is through expert opinions delivered either orally through testimony or in writing. However, the examples described above suggest other ways in which assistance could have been provided.
First, it is obvious that neither the director of emergency services in Example 1 nor the director of the public health department in Example 2 had sufficient and correct understanding of the use of glucagon for treating severe hypoglycemia. While this may seem surprising, it was nevertheless true. Diabetes health care professionals had failed to educate these physicians as to the importance and safety of intramuscular glucagon in treating severe hypoglycemia. We must all do a better job of communicating correct information to those whose medical practice does not involve the care of children with diabetes on a day-to-day basis.
A second way in which health care professionals can contribute to the advocacy process is by being involved at the local level with local health care concerns. School health committees of the state chapters of the American Academy of Pediatrics are often asked to review guidelines for the management of students' special health care needs. In Virginia, each school district is required to have a school health advisory board, which includes in its membership physicians, nurses, parents, and educators. These boards, appointed by the local school boards, set local policy with regard to the management of children with medical problems who attend local public schools. They develop policies for providing services to these children, address specific parental health concerns, and suggest ways of accommodating all students within the classroom.
Finally, it is important for diabetes health care providers to recognize that children have disorders other than diabetes, many of which are far more handicapping. Effective advocacy for a particular disorder should never preclude assistance for children with other disorders. In other words, if it is important to children who have one disorder, chances are great that similar policies will benefit children with other disorders. Limiting one's comments and support to a single disorder may diminish or detract from the perception of one's credibility and one's commitment to all children.
The opportunities for advocacy discussed above apply to all categories of health care professionals—physicians, nurses, dietitians, social workers, mental health workers, pharmacists, and so forth. Indeed, nurses often write state school health guidelines, supervise their implementation, and are usually responsible for executing school health policies. Dietitians assist with the construction of school menus. Social workers are often the first ones to be consulted regarding discrimination against children. It is incumbent on health care professionals to search for ways in which their input into policy-making can be most effective. Finally, health care professionals should be encouraged to participate on the government relations or advocacy committees of local, regional, and national voluntary health agencies such as the ADA.
Other Areas in Need of Advocacy
This article has focused on advocating for the special health care needs of children with diabetes while they are attending school or day care. This is not the only area in which advocacy for children with diabetes is needed (Table 1).
Table 1. Other Areas in Which Advocacy for Children With Diabetes Is Needed
Career opportunities and job training
Protection from counterfeit medications
Cultural implications of the disease
One of the most important areas for advocacy is in health care insurance. The plethora of health maintenance organizations, preferred provider organizations, Medicaid, third-party payers, and other managed care options often restrict children's access to specialized health care and limit the care options available to them.
For example, children with diabetes covered by Medicaid in one state are often prohibited from obtaining specialized health care from a provider in a neighboring state despite the geographic proximity of that provider. Such rules require families with the fewest financial resources to travel the longest distances to obtain such care.
The number of blood glucose reagent strips and lancets permitted under some health care plans is so limited that optimal blood glucose control is not possible. The use of insulin infusion pumps is often limited to certain age-groups and then only permitted in cases where patients' average blood glucose levels are above arbitrary "good control" ceilings. Such restrictions on the ability of health care providers to assist children to achieve levels of glucose control that might reduce their risk of future microvascular complications are capricious and unacceptable.
Other areas in which advocacy can be useful include life insurance, recreational activities, career planning, and job training opportunities. Many of these activities and opportunities, which healthy children and adolescents take for granted, are not available to those with diabetes. Health care providers need to listen to their patients and their families and assist them in seeking equal opportunities for these children.
While assisting them, however, it is also important to remember that children with diabetes do not have a condition that in and of itself limits their ability to perform self-care activities, communicate, socialize, or complete tasks. Nor does diabetes in and of itself confer upon a child a functional limitation in learning and motor functioning. These are often the criteria for qualifying for Supplemental Social Insurance (SSI).
It is important that while advocating for equal opportunities and safety, health care professionals simultaneously affirm the ability and responsibility of parents and children to strive to achieve their maximal potential. Health care professionals should advocate for responsibility, good self-care practices, good health maintenance, and responsible citizenship. The goal of pediatric diabetes care is to assist children to achieve physical and emotional maturity free from the psychological and physical complications of diabetes. Appropriate advocacy should support, not undermine, that goal.
Finally, it is important to be aware that children with diabetes who live in other countries also require advocacy. At a recent meeting of the International Society for Pediatric and Adolescent Diabetes (Noorwijkerhout, The Netherlands, April 1999), Professor Francois Bonnici of South Africa described the barriers to diabetes care that exist outside the Western world. These include a lack of insulin, monitoring equipment, and appropriate nutrition. In addition, counterfeit insulin is frequently sold and administered. In some societies, female children who develop diabetes relinquish their possibility of marriage, lose their traditional role in society, and are bound to servitude.
Advocacy cannot stop at the border of one's country nor at the border of one's personal concern. Health care professionals need to keep themselves aware of the needs of children and be available to assert their human rights as well as their legal rights. It is a job that has just begun.
1The DCCT Research Group: The effect of intensive treatment of diabetes on the development and progression of long-term complications in insulin-dependent diabetes mellitus. N Engl J Med 329:977-86, 1993.
2The DCCT Research Group: The effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin-dependent diabetes mellitus: Diabetes Control and Complications Trial. J Pediatr 125:177-88, 1994.
3American Diabetes Association: Position statement: Implications of the Diabetes Control and Complications Trial. Diabetes Care 22 (Suppl 1):S24-26, 1998.
4Holmes C, Richman L: Cognitive profiles of children with insulin-dependent diabetes. J Dev Behav Pediatr 6:323-26, 1985.
5Ryan C, Vega A, Drash A: Cognitive deficits in adolescents who developed diabetes early in life. Pediatrics 75:921-27, 1985.
6Rovet J, Ehrlich R, Hoppe M: Intellectual deficits associated with early onset of insulindependent diabetes mellitus in children. Diabetes Care 10:510-15, 1987.
7Golden M, Ingersoll G, Brack C, Russell B, Wright J, Huberty T: Longitudinal relationship of asymptomatic hypoglycemia to cognitive function in IDDM. Diabetes Care 12:89-93,1989.
8Ryan C, Atchison J, Puczynski S, Puczynski M, Arslanian S, Becker D: Mild hypoglycemia associated with deterioration of mental efficiency in children with insulin-dependent diabetes mellitus. J Pediatr 117:32-38, 1990.
9Gschwend S, Ryan C, Atchison J, Arslanian S, Becker D: Effects of acute hyperglycemia on mental efficiency and counterregulatory hormones in adolescents with insulin-dependent diabetes mellitus. J Pediatr 126:178-84, 1995.
10American Diabetes Association: Position statement: Care of children with diabetes in the school and day care setting. Diabetes Care 22 (Suppl 1):S94-97, 1999.
11American Diabetes Association: Your School and Your Rights: Discrimination Against Children with Diabetes in the Public School System. Alexandria, Va., American Diabetes Association, 1996.
12Henderson K: Overview of ADA, IDEA, and Section 504. Eric Digest, June 1995.
13Richards D: A stroll through the school district's Section 504 duties. Richards, Lindsay, and Martin,LLP. Spring 1998.
14Settlement Agreement in Struthard v. KinderCare Learning Centers, Inc. Case no. C2-960185, U.S. District Court for the Southern District of Ohio.
15Settlement Agreement in Davis v. La Petite Academy, Case no. CIV97-0083-PHX-SMM (USDC Arizona 1997).
16Edwards A: Getting loud on schools. Diabetes Advocate, March 1999, p. 6.
17American Diabetes Association: Getting loud on diabetes. Diabetes Forecast, April 1999, p. 42.
18Senate Bill No. 889. Care of public school students diagnosed with type 1 diabetes. Virginia General Assembly, 1999.
The author expresses appreciation to Rebecca Hicks, MEd, for her technical review of this article.
William L. Clarke, MD, is a professor of pediatrics in the Division of Pediatric Endocrinology at the University of Virginia Health Sciences Center in Charlottesville, Va.
Last Updated: Thursday August 29, 2002 21:04:40
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