Andrea DeFusco shares with us the part of her Master's Thesis that deals with the rights of children with diabetes in public schools in the United States. A portion of her research was conducted through a survey form that visitors to children with DIABETES answered.
IntroductionWhen she pulled up to the curb of the Minnesota public school, Mrs. Bellafiore (name changed) saw her third-grader standing alone, confused and disoriented, with sweat pouring down her pale face. Her daughter lost consciousness as she climbed into the car. It took one and a half hours to pull her out of her hypoglycemic (low blood sugar) state. Both the child's teacher and school secretary knew she had diabetes mellitus, yet both failed to recognize the signs of hypoglycemia. The child should never have been sent alone to the principal's office when she reported feeling ill. And she definitely shouldn't have been sent outside alone to wait for her ride home. Someone should have helped her sip four ounces of juice or eat something sugary, such as glucose tablets or life savers. She also could have checked her blood glucose level on a glucometer to determine whether she was legitimately ill or merely suffering from low blood sugar. The next day, the mother questioned both the teacher and the secretary, who responded that "It was just too busy around here, I didn't have time to notice."
A recent article in Diabetes Forecast reported that of the 263 U.S. parents who answered surveys, 67% reported problems related to diabetes management at their child's school. Review of current literature indicates that children with diabetes are not participating in school as fully as they could. The literature is fraught with statistics and anecdotal accounts of poorly managed diabetes, discrimination and schools that are breaking federal law. In addition, many parents of children with diabetes mellitus lack a thorough understanding of the disease and how the routines and activities of schools can affect the disease and their child's learning. And many parents, even those well educated about diabetes mellitus, are not knowledgeable about the legal educational rights of their children. Many parents don't know what instructional resources exist or where to find them.
Taking diabetes to school need not be difficult. Equipped with the right tools, parents can learn to effectively plan, educate and communicate with school personnel. I decided to develop such a tool - a handbook for parents of school-age children with diabetes mellitus. This handbook could also prove useful for all school personnel who come into contact with such a child. The handbook explains the disease and the nuances created when school schedules and routines come into play. It outlines the basics of good diabetes management. It discusses how to develop good parent-teacher partnerships. It considers various ways to provide the best diabetes education for school personnel and classmates. It clarifies the legal educational rights of children with diabetes mellitus and how parents can research and apply those rights. It instructs school personnel of their obligations by explaining how federal law applies specifically to diabetes management and schools. It contains a list of educational resources and where to access them. The handbook is full of helpful tips from parents on how to handle everything from edible math manipulatives to fussy eaters and cafeteria food. Lastly, the handbook offers money saving tips for parents and schools because diabetes management is expensive.
Summary"As a mother of a diabetic child and a teacher, I can say that it is unfair to expect teachers to have complete understanding of diabetes. My daughter is one of six students with special needs mainstreamed within a regular education class."
"The (private) school doesn't pay attention to its diabetic patients. Every time I call the school they don't respond. It's hard to talk to the people in charge at school. Even if we talk, nothing will change."
"It seems to me, as always, that parents have to fight to make sure their child has their needs met at school."
I wish to thank the nearly 200 parents who poured out their hearts and shared their stories with me. Their honesty made this handbook possible. I am disappointed that only nine out of the 50 schools responded to my surveys. They missed a unique opportunity to fulfill their mission as educators and indispensable collaborators with parents on a health care issue that is so widespread but so little understood. The fact that diabetes affects so many children and is potentially life-threatening should be incentive enough for earnest, cheerful teamwork between parents and educators. Alas, the lack of this very cooperation, confirmed by the responses to my survey from the hundreds of parents throughout the world, inspired me to write this thesis.
All the parents who responded to my questions learned something by completing the survey, as did I - that the love for our children will forever serve as a source of boundless energy to transcend bureaucratic inertia and vigilantly educate those in society who are given the privilege of acting in our stead. For those who suffer from it, diabetes is a disease of denial; as a researcher and parent and wife of diabetics, I have discovered that this is no less the case for many in the education establishment. Like a successful marriage, parent/school relationships require ongoing education, planning, communication, and most important, the willingness to validate each other's concerns, acknowledge areas that need improvement and work to change things for the better. The health and well-being of innocent children are at stake.
Parents must be the driving force in gaining public support for those who suffer from diabetes by educating themselves, their families, schools and others. Who else is positioned so appropriately for such a task? This handbook was created for such a purpose - a guide for parents so they may confidently assert their children's right to fully and vigorously participate in school and society, safe in the knowledge that they are supported by a concerned and nurturing community. For me and the countless number of parents whose children have diabetes, this is the essence of the struggle.
ExerciseEvery parent of a child with diabetes knows how important it is to provide extra snacks for children who plan to exercise. These snacks must be eaten before exercise begins in order to avoid a "low." However, not all physical education instructors or recess monitors may be aware of this fact.
Take for example the student who told the gym teacher he was tired. The teacher, who knew the boy had diabetes, thought the problem was motivational and not physical and gave him a playful kick in the bottom before forcing him to run laps. This child began vomiting due to low blood sugar.
This is why diabetes education is crucial for all school personnel who will come into contact with your child. I have seen my child experience an insulin reaction during exercise because he forgot to drink his juice box before climbing the cargo net. Teachers cannot always be counted on to remind our children either. Therefore, it is important that gym teachers have a stash of sugary snacks like a four-ounce juice box or glucose tabs in case a reaction occurs. It is equally important to find out your child's daily school schedule so that you can plan snacks while taking into consideration his or her gym lessons and recess breaks.
One night my son awoke screaming and kicking, suffering from low blood sugar. I was baffled because he had eaten a bedtime snack and his bedtime glucose reading was where it should have been. What I didn't realize about exercise was that an insulin reaction can occur in the middle of the night or even the next morning following a day that included extra exercise. Some extra carbohydrate at bedtime may be necessary it this pattern fits your child.
The following recommendations come from a Journal of School Health article written by a doctor and doctoral student familiar with the challenges facing teachers of students with diabetes.
- "Exercise may alter regulation of blood glucose, it can contribute to immediate or delayed hypoglycemia in an individual with normal blood sugar, and an adequate amount of circulating insulin. "
- "Paradoxically, exercise can contribute to further hyperglycemia and even ketosis in individuals who are insulin-deficient, and who have high blood glucose levels (above 300mg/dl)." Exercise can be dangerous if levels are too high, thus the guidelines of "no exercise if over 300mg/dl." Further hyperglycemia results because the liver is stimulated to release stores of glycogen which is converted into glucose. It is important for your child and the gym teacher or coach to know the dangers of exercise and high blood sugar.
In the Diabetes Forecast survey mentioned earlier, 14% of respondents said that their child had been forced to exercise even when he or she should not have been. Eight percent said that the coach doesn't allow child to carry treatment for insulin reactions. My survey results indicated only a few problems in this area. However, most parents told me they were unaware that exercise could be dangerous when their child was running "high."
Other major precautions for the diabetic child in physical education include avoiding severe fatigue, dehydration, and avoiding cuts, abrasions, and infection. A recent article in Diabetes Forecast featured a story about a man who ignored a foot blister while traveling in Europe for three weeks. He ended up with a bone infection and almost lost his leg. Fortunately for him, nearly a year of intravenous antibiotics cleared up his infection. Make sure your child knows not to go barefooted and to attend to all cuts immediately by washing and applying an antibiotic ointment and covering with a sterile covering.
Legal Protection of ChildrenWhere do parents turn when trying to find the laws that protect the legal educational rights of their children? After reading the laws, how does one understand them as they apply specifically to diabetes? Why is it that the federal laws seem to apply differently in different schools and different states? How do the laws apply to private schools as compared to public schools? How does one approach and work with their child's school system to make sure their child is protected by these laws? Some answers are clear cut. But mostly what I found was some very gray answers to my questions.
Where Do You Look?For an outline of special educational laws, parents can call their state department of education. Connecticut has an excellent handbook entitled "Serving Students with Special Health Care Needs" which outlines in detail the various laws.
Parents can also contact the American Diabetes Association (ADA) or the Juvenile Diabetes Foundation (JDF); both have pamphlets briefly explaining the laws. The Internet also is filled with detailed information at the touch of a fingertip. The online magazine Children with Diabetes has hyperlinks to text regarding every law and advice on how to work with school systems. Reviewing my survey responses showed that the 46% of parents who believed they knew their child's legal rights learned about them from either the ADA, JDF, or the Internet. Surprisingly, none of the 146 parents learned anything from their child's school.
Most schools do not inform parents of their child's legal rights until after the child has been referred for services. This is unfortunate because many children are not benefiting from the laws because parents are unaware that their child qualifies for services. Worse, many are being discriminated against or excluded from regular school programs to which they are entitled and parents aren't even aware anything illegal is going on. "In addition, lack of understanding of the law as it applies to diabetes and schools contribute to inappropriate and unnecessary restrictions upon educational activities."
Specific to Diabetes
Public Law 94-142After an extensive computer search, I was only able to locate two articles explaining legal protection and students with diabetes.
"The most important educational program to effect special needs children is the Education for All Handicapped Children Act of 1975 (a.k.a. 1990 Individual Disabilities Education Act or IDEA), commonly referred to as Public Law 94-142. This federal mandate entitles all physically, developmentally, emotionally and other health-impaired children to free, appropriate public education." (Gray et. al., 1991).
Children with diabetes fall under the "other health impaired" category and are entitled, if declared eligible for special education services, to whatever support services are needed, including health-related services.
However, this law is tricky. In order for a child with diabetes to be entitled to services, he or she must show that illness significantly interferes with their academic achievement. For most students with diabetes, their disease does not affect their intellectual ability or their academic achievement. However, there may be some cases where the disease does affect achievement. For example, a child may be absent frequently due to the disease or related complications, or because the child is too exhausted to participate fully in the school routine.
If educational performance is impaired, the child would need to have an interdisciplinary meeting, usually called a Planning and Placement Team (PPT) meeting. After an assessment, the child could have an Individualized Education Plan (IEP) written. The child must then be placed in the least restrictive environment possible. The child is entitled to support services to benefit from education. Lastly, the school must provide the family with procedural safeguards such as right to confidentiality or right to due process.
Due process is a broad, general concept that places limitations on government action. It is a Constitutional right guaranteed in the 14th amendment. It guarantees fairness in law, such as during court proceedings and administrative hearings. For more information on due process, contact your State Department of Education's lawyer or legal expert.
Pitfalls of Public Law 94-142According to the Gray article, schools often insist that school nurses need to provide all health-related services even when the services can be delivered by a lay person. I do not understand why this is so. I learned that teacher unions can prevent school personnel from providing certain services, such a glucose testing, even when state laws permit non-health professionals to do so. Usually the school nurse has the authority to delegate tasks to school personnel as per guidelines of the State Nursing Board of Examiners.
The Gray article also states that other schools have inappropriately transferred children to schools for physically handicapped students because school nurses were not readily available.
It further states that too often schools "provide services based on availability of resources rather than on individual needs. Lack of available resources, including school nurses, does not relieve the school of its obligation to provide services under Public Law 94-142. Moreover, it does not negate the school's responsibility to develop a plan to meet the child's identified need."
"Our school did not have any nursing coverage. My wife and I had to fight for two years and threaten a federal lawsuit (under Title IX, X and XI) in order to get the school board to think straight."
According to Gray, another reason schools refuse to provide health services like glucose testing is because they incorrectly view it as a medical service rather than a health-related service.
A final issue is liability. There are six states which have a legal code protecting schools from liability for the administration of medication. Connecticut is one of those six states. However, immunity is not granted for gross negligence, and procedures must be performed in accordance with current standards of care. School staff must be trained by a qualified health care professional.
Section 504 of the Rehabilitation Act of 1973Once it has been determined that a student is not eligible for services under IDEA, the student may be considered handicapped for the purposes of Section 504 of the Rehabilitation Act.
"Section 504 is a basic civil right statute which prohibits discrimination on the basis of handicap by recipients of federal funds. Public school districts are recipients of federal funds" (Connecticut State Department of Education, 1992).
Diabetes qualifies as a handicap because it falls under the category of "physical or mental impairments" which can limit a major life activity.
Section 504 is much broader than IDEA and focuses on "protection" against discrimination as opposed to eligibility for special education.
Once parents request a 504 meeting by calling or writing the principal, a team, including school personnel, parents, and any advocates parents wish to bring, works to determine the student's needs and how they can be met. For example, a parent can state that the child may use a blood glucose meter in the classroom or must be allowed to administer insulin injections.
"The most important service students with diabetes require for equal accessibility to educational opportunity and protection from unreasonable discriminatory behavior is the presence of competent school personnel who know how to care for them" (Vennum, 1995). This means parents can insist that personnel be inserviced about diabetes.
School districts must also allow students to eat a snack in the classroom, attend field trips (requiring parental accompaniment is illegal), fully participate in school activities and athletics, and check blood glucose levels and administer insulin in a safe manner, either within the classroom or elsewhere in the building." (Vennum, 1995)
Cases VaryIf federal laws must be followed by every school in every state, then why do individual cases vary so much? This was the most difficult part of the handbook to write. In my search for litigation, trying to sort through the enormous General Statutes of Connecticut and other legal texts was tedious and unfruitful. A two-hour computer search turned up only one case and it involved a summer camp program, not a school. I was unable to obtain access to law computer search programs such as Lexus or Westlaw.
I contacted Terry DeFrancis, lawyer with the Connecticut Department of Education who answered some of my legal questions.
The most important thing for parents to understand is that no matter which law is used to provide protection, every case must be taken on an individual basis. A school's obligation to provide specific health-related or special education services depends upon the established need of the student. According to Terry DeFrancis, students with HIV or AIDS are the only ones she is aware of that are automatically qualified as handicapped. Team meetings are required so individual determinations may be made. For example, just because a student has an eating disorder like anorexia or bulimia does not necessarily mean they qualify for services. The same is true for students with diabetes. Even though diabetes qualifies as a disability because it interferes with a major life function (metabolism), not all students are entitled to having assistance with blood glucose monitoring or other health-care routines at school. This appears to be contrary to the Vennum article.
Individual Health Care Plans (IHCP)In some states, including Connecticut, there are a few restrictions for entry into school of any eligible child. All children must have a health assessment and a completed program of immunizations. "For some students, entry or re-entry into school requires a more complex process," according to the State of Connecticut Department of Education (1992). These students have known health conditions requiring advanced planning, specialized health services and advanced preparation of personnel. "In order to accommodate these students safely, it is critical that school districts . . . develop a process to ensure assessment of the student's individual health and safety needs in school and sufficient preparation of both personnel and the environment before entry occurs."
This process usually entails the following steps:
- prior to entry, parent/guardian notifies school.
- school administrator and school nurse confer.
- with family, school nurse initiates and completes an assessment of student's health status and needs.
- the nurse initiates development of an IHCP, an Individualized Health Care Plan, in collaboration with family, health care provider. All relevant school personnel must be consulted and informed.
- school nurse initiates a team meeting to finalize IHCP, assign responsibilities, identify need for personnel training, identify supplies needed etc.
- school nurse monitors student's status, maintains communication with school personal and family, provides supervision.
- IHCP reviewed and revised when needed.
Many of the parents I surveyed reported that they were the ones who initiated and wrote their child's IHCP. Worse yet, 70% reported their child had no care plan in place. Fifteen percent of the parents I surveyed did not know what an IHCP, IEP, or PPT was.
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Placed on-line on 30 January 1997
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