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Things Every Parent of a Child with Diabetes Should Know
If you have a school aged child with diabetes you get to add an extra challenge to your list of things to do: preparing your child for school.
You aren’t alone. More than 176,000 children and adolescents have type 1 or type 2 diabetes. In addition to having diabetes, they also have one other thing in common: most spend the bulk of their day in school, away from the protection and care of their parents or adult caregiver.
As you know, most children with diabetes take medication to control it. These medications, especially insulin, must be carefully balanced with food and exercise to achieve good glucose control each day. Health and safety are at risk when these are not balanced.
Diabetes management in children and adolescents requires complex daily management skills which can challenge parents and cause them to worry. This can be even more pronounced when their children are in the care of school personnel who may or may not understand diabetes and its management to ensure the safety and well being of students who have diabetes.
It’s going to add an extra layer and complication to your life, but the peace of mind should be worth the effort.
Fortunately, three federal laws provide protection for children with diabetes and require school districts to ensure access to educational opportunities in a medically safe environment, without discrimination. These federal laws are: the American with Disabilities Act (ADA), Section 504 of the Rehabilitation Act of 1973, and the Individuals with Disability Education Act (IDEA).
Any school that receives Federal funding must comply with the Americans with Disabilities Act, Section 504 and IDEA. A child need not require special education to be protected.
Parents can use these laws to ensure that, while at school, their children with diabetes can fully participate in all school activities, while at the same time caring for their medical needs.
Taking Action Against Discrimination
The Americans with Disabilities Act
The Americans with Disabilities Act (ADA) is a federal law that prohibits discrimination against qualified individuals with disabilities. The law also prohibits retaliation for asserting the right not to be discriminated against.
No otherwise qualified individual with [diabetes] in the United States . . . shall, solely by reason of . . . [diabetes], be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance.
Under this law a school may not discriminate against a child with a disability and must make reasonable changes in its practices and policies to avoid discrimination and afford an equal opportunity to participate unless doing so would impose an "undue burden."
The Americans with Disabilities Act also protects parents/guardians from being fired or other adverse employment actions because of their child's disability. If paid or unpaid leave is provided for other personal or family reasons, the employer cannot deny similar leave just because the employee needs the time for reasons related to a child's disability. [See Family Leave Act]. For additional information about the Family Leave Act visit: Employment Law HQ.
Note: The Americans with Disabilities Act Amendments Act (ADAAA) broadens coverage for children with disabilities under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973. The ADAAA went into effect January 1, 2009. Americans with Disabilities Act Amendments Act
Section 504 of the Rehabilitation Act of 1973
Section 504 is part of the Rehabilitation Act of 1973, a federal civil rights law to prohibit discrimination on the basis of disability. The law also prohibits retaliation for asserting the right not to be discriminated against. Section 504 applies to all public schools and to private schools that receive federal financial assistance.
To be protected by Section 504, the student must have a disability defined as:
• A physical or mental impairment that substantially limits one or more of major life activities;
• A record of such an impairment, or
• Be regarded as having such an impairment.
Under this law schools are required to identify children with disabilities and provide a "free appropriate public education" to each child with a disability. This means children may receive regular classroom education or be provided with assistive aids and services to meet their specific disability needs.
The law also affords children with disabilities an equal opportunity to participate in non-academic and extracurricular services and activities.
Section 504 provides the following rights to parents or guardian:
• To have their child assessed under Section 504.
• To hold an Individual Education Plan (IEP) or a Section 504 meeting with school district personnel and be supported by an advocate, attorney, and/or experts, if desired, to better explain the child's diabetes management.
• To develop an IEP or a Section 504 plan that specifically states the child's needs and the services required to meet these needs.
• To be notified of and approve any proposed changes in the child's plan, or to attend any meetings concerning proposed changes.
The best way to ensure that diabetes needs are met in a way that maximizes safety, health, learning and participation is to develop a written care plan.
Individualized Education Program
An Individualized Education Program (IEP) is a document that outlines the specific actions a school is going to take to meet the child's individual educational needs.
There are very specific rules about developing an IEP and what it must contain. The IEP must be developed with input from the child’s IEP which includes:
• The child's parents or guardians
• At least one regular education teacher
• At least one of the child's special education teachers or providers
• A representative of the school district who is qualified, knowledgeable, and authorized to commit district resources to the child
• School dietitian
• A qualified professional who can interpret the evaluation of the child
• Others at the discretion of the parent or the school district, and, where appropriate, the child themselves
An IEP must contain the following specific documents:
• A statement of the child's current level of performance, including how the child's disability affects progress in the general curriculum.
• A statement of measurable annual goals, including benchmarks or short-term objectives.
• A statement of the special education and supplementary aids and services to be provided.
• A statement of program modifications or supports for school personnel that will be provided.
• A statement of any modifications needed for the child to participate in district-wide tests or other assessments.
• A statement of how the child's progress toward the annual goals will be measured and how the parents will be informed of progress toward goals.
• Medical orders from the child's healthcare team, as described under Section 504, are also needed for a child with an IEP.
Other Information that may be included in an IEP:
• The need to have information repeated if a child has had an insulin reaction or extremely high blood sugar, and was not able to concentrate and need additional assistance.
• The child with diabetes may need to be allowed to take make-up tests if that student has had an insulin reaction or severe hyperglycemia during an exam.
• Flexibility in attendance requirements in case of health-related absences including physician visits (e.g., allowing students to be on honor roll and qualify for awards, etc).
• Permission to leave class to use restroom as needed.
• Provision of adequate time for taking medication, checking blood sugars, and completing meals and snacks.
• Access to increased fluid intake as needed.
Specifically, with regard to diabetes, the IEP will contain the same types of related aids and services discussed under Section 504 Plans.
Section 504 Plans
A child with diabetes will have specific needs that should be attended to throughout the school day. The Section 504 Plan is developed to address those needs.
Typical 504 Plan Details for Children with Diabetes
School Administration Details
• Provide written assurance to parents of nondiscrimination.
• Provide notice of nondiscrimination in admission or access to its programs or activities. Notice must be included in a student/parent handbook.
• Designate an employee to coordinate compliance.
• Cooperate in providing authorized accommodations.
• Provide grievance procedures to resolve complaints.
• Provide training to all adults who provide education/care for the student on the symptoms and treatment of hypoglycemia and hyperglycemia and other emergency procedures. This would include as teachers, coaches, and bus drivers.
• Provide training for an adult and back-up adult(s) who can: perform finger stick blood glucose monitoring and record the results; administer insulin if necessary; test the urine or blood for ketones, when necessary, and respond to the results of this test. NOTE: The delegation of healthcare tasks at school to unlicensed personnel may be governed by the state’s nurse practice act.
• Maintain sufficient trained staff to check blood glucose levels and administer insulin and glucagon.
• Allow the child to test their blood sugar level and administer insulin, or have a snack. If the child is not yet able to do so, provisions will be made for a staff member to perform this task.
• Setting aside an area where blood sugar levels will be tested and insulin administered. The school does have the right to not allow blood glucose testing in the classroom. However, if you can demonstrate that this procedure will not endanger others and medical waste will be disposed of at home and not at school, the school may allow the child to check in a secure area in the classroom. In classroom checks allow a child to miss less class time when dealing with routine care.
• Permission for the student to see school medical personnel upon request.
• Insure the child may fully participate in all sports, extracurricular activities, and field trips, with the necessary assistance and/or supervision provided.
• Allow the child to eat whenever and wherever necessary, including providing lunch at an appropriate time with enough time to finish eating.
• Allow the child to take extra trips to the bathroom or water fountain.
• Permit extra absences for medical appointments and sick days when necessary.
• Making academic adjustments for classroom time missed for medical appointments, testing, or because of periods of high or low blood sugar.
• Provide for alternate learning activities, assignment schedules, or instruction if an influenza outbreak or other health threat requires that the student should not attend school.
• Outline blood glucose monitoring procedures including the frequency and circumstances requiring testing. (For example before eating or exercise).
• Specify medication procedures and dosages including doses/injection times prescribed for specific blood glucose values and the storage of insulin. Be sure to note if your child is capable of deciding what amount to be administer. If they are too young or don’t fully understand self management, provide a chart to determine amount to be given or request a phone call.
• Symptoms and procedures for treatment of hyper and hypoglycemia including the administration of glucagon if recommended by the student’s treating physician.
• When to test for ketones and what actions to take for abnormal ketone levels, if requested by the student’s health care provider.
• Precautions to be taken before physical activity.
• Guidelines for meals, snack, special treats, and parties including food content, amounts, and timing. The parent should work with the school to coordinate this schedule with that of the other students as closely as possible. Timing of meals and snacks at school may pose problems with lunch periods that span 3 hours, as is the case, in larger schools. Insulin and snack regimens can usually be modified to accommodate early or late lunch periods, though rotating lunch schedules are especially difficult for children with diabetes to manage. Long delays in lunch lines, especially if the student has just been treated for hypoglycemia or has had pre-meal insulin, may cause low blood glucose. Younger children may also need school staff to help with serving sizes, monitoring actual food intake at meals, and/or supervision to prevent inappropriate food exchange with classmates.
• Contact information for medical assistance (as needed) and parents.
There is sometimes confusion regarding the differences between a 504 and Individualized Education Plan. Simply, a 504 plan is plan designed to deal with medical issues, such as diabetes, and would contain instructions, for blood glucose monitoring.
An IEP is designed to address educational challenges or special needs not related to a medical treatment plan. An IEP, for example, would include instructions for additional reading education, should it be needed. Children with diabetes may not need an IEP, unless they have special academic needs.
The Individuals with Disabilities Education Act (IDEA)
IDEA is a federal law requiring states to provide a "free, appropriate public education" to children with disabilities so they can be educated whenever possible along with all other children.
A child with diabetes must show they need special education or services to benefit from schooling. An evaluation must show that, because of the child's diabetes (or other disability), they have a condition that adversely affects their educational performance.
For example, learning when blood sugar levels are either too high or too low may be difficult. If a child is having difficulty managing their blood sugar level, this may affect how well they do in school. Academic progress might also suffer if a child with diabetes misses a significant amount of classroom instruction each day in order to perform diabetes care.
Qualifying children are entitled to special education and related services at no cost to their parents/guardians.
Under IDEA a child may receive special education. This means adapting what and how the curriculum is taught, in order to address the child's unique needs. The child must have access to the same curriculum so they can meet the same educational standards that apply to all children in that school district. For example, a child with diabetes might need a tutor or a classroom aide to help catch up with missed schoolwork.
A child may also be eligible to receive related services, such as school health services. For example, children with diabetes require there be trained staff available at all times that are knowledgeable about diabetes and the child's specific plan for diabetes care. Staff must know how to recognize and treat high and low blood sugar levels. Younger children may require assistance in blood glucose checking and administering insulin.
IDEA offers parents numerous protections. These include:
• Parents give consent before evaluation. The school district may request a due process hearing from the state education agency if there is no parental consent.
• Parent may inspect and review all of their child's education records and participate in meetings about their child.
• Requires notice to parents of decisions and plans before the district puts the proposed actions into effect.
In spite of federal legal protections, however, children with diabetes sometimes face problems in getting the care they need in schools. The types of challenges can vary significantly from state to state, or even district to district.
As you can imagine, each school will react differently to children that need extra attention. And children with diabetes do need extra attention, especially when they are very young. If your child is recently diagnosed and you are approaching your first school year with diabetes, here's a list of things you should do before school starts:
Meet with the school principal and determine the school's specific policies regarding children with diabetes and let them know you will like to prepare a 504 plan to assist them with the care of your child.
Find out at what time your child will be having lunch so you can plan your insulin accordingly. Some kids have lunch at 11:00 while others have lunch at 12:45. That can make a big difference on insulin and morning snack makeup.
Find out the name of your child's teacher(s) and schedule appointments to see them before school starts. At that meeting, you should:
Let the teacher(s), including gym, music, art teachers and the librarian, know your child has diabetes (this is especially important for gym teachers). Briefly describe what it means to have diabetes. Providing some background information to leave with the teacher is a good idea. Both ADA and JDRF have booklets and pamphlets to assist you. The ADA publication, Caring for Children with Diabetes (not free) covers the basics about diabetes and, at only 14 pages, is short enough to read in about an hour. An extra note for gym teachers: Be clear your child must test before exercise and should not exercise with a blood sugar over 240 mg/dl, since such a high sugar can indicate insufficient insulin and, in this case, exercise can actually cause the blood sugar to rise.
Explain that your child must eat mid-morning and mid-afternoon snacks, and what time you expect the snacks to be eaten. Regardless of the day's activities, your child must be allowed to eat these snacks. That might mean bringing food to an assembly or field trip. This sometimes causes problems with other students. It might be necessary to explain to the other students why one child is allowed to “break the rules” about food in the classroom.
Describe what happens when your child is hypoglycemic or might be having an insulin reaction. Since every child reacts differently, tell the teacher exactly what to look for and how to respond. You might want to provide a one-page instruction sheet.
Give the teacher a supply of gluco tabs or crackers, graham crackers, peanut butter, granola bars or raisins to keep in her desk in case they are needed. An old lunch box or a plastic container clearly labeled with your child's name works well as a container.
In some schools, these supplies might need to be stored in the clinic.
Be certain that if the teacher suspects that your child is having an insulin reaction that your child is not to be left alone.
Provide all materials and equipment necessary for diabetes care tasks, including blood glucose testing, insulin administration (if needed), and urine or blood ketone testing, or a glucagon kit. This includes blood glucose meter, testing strips, lancets, and extra batteries for the meter, insulin and syringes/pens, antiseptic wipes, for children who wear an insulin pump, backup insulin and syringes/pens in case of pump failure. These can be kept at school, or brought daily in a regular travel kit.
Parents are responsible for the maintenance of the blood glucose testing equipment and must provide a sharps box or the materials necessary to ensure proper disposal of medical waste.
In some states or school districts, use of insulin pens rather than syringes by unlicensed school health personnel is preferred. Pens often make it easier both for unlicensed staff and the young student to learn to give insulin. Pen needle removers and retractable pen needles alleviate concerns about accidental needle-sticks. Interactive tutorials are also available online for learning to use an insulin pen.
“Smart” insulin pumps make it easier and less intimidating for school health staff to assist a young student with insulin bolus administration. Dose calculations are done by the pump and can be verified by phone with the parent if desired. Insulin pump companies will also send certified pump trainers to schools to assist with staff training. Most also have web-based interactive tutorials, CD ROMs, and videos.
If your child is too young to track their numbers, provide a logbook to keep at school with the diabetes supplies for the staff. Set up a regular schedule for sharing the school blood glucose values.
Your child also needs to have quick sugar emergency supplies with them at all times, such as: Glucose tablets, Lifesavers, Sweet Tarts or a small tube cake icing (gel type)
Check with the teacher or health aide weekly to see if items need to be replaced.
Provide an emergency number so your child's teacher(s) and clinic nurse, if there is one, can send you a text with your child's blood sugar value whenever it is out of the range that you feel is acceptable.
Written instructions are particularly important when your child has a substitute teacher. Make sure that your instructions are prominently posted in the classroom, preferably close to the teacher's desk. You might even want to print it on bright yellow or pink paper so that it stands out.
Expectations of the student in diabetes care
Parents should attempt to educate their children a
s early as possible on the details of their own diabetes care. This is important because they need to understand the importance of glucose testing, food and exercise in the management of their disease (you won’t be there forever!)
Work to have your child able to take the lead in implementing their diabetes care at school. This will obviously depend on the student’s age, development and experience with diabetes. The extent of the student’s ability to participate in diabetes care should be agreed upon by the school personnel, the parent and the health care team, as necessary.
The ages at which children are able to perform self-care tasks are very individual and variable, and a child’s capabilities and willingness to provide self-care should be respected.
1. Preschool and day care. Preschool children are usually unable to perform diabetes tasks independently. By 4 years of age, children may be expected to cooperate in diabetes tasks.
2. Elementary school. The child should be expected to cooperate in all diabetes tasks at school. By age 8 years, most children should be able to perform their own finger stick blood glucose tests with supervision. By age 10, some children can administer insulin with supervision.
3. Middle school or junior high school. The student should be able to perform blood glucose self-monitoring under normal circumstances and administer insulin with supervision. They may require assistance if experiencing low blood glucose levels.
4. High school. The student should be able to perform self-monitoring of blood glucose under usual circumstances (when not experiencing low blood glucose levels). In high school, adolescents should be able to administer insulin without supervision.
At all ages, individuals with diabetes may require help to perform a blood glucose test when the blood glucose is low. In addition, many individuals require a reminder to eat or drink during hypoglycemia and should not be left unsupervised until such treatment has taken place and the blood glucose value has returned to the normal range.
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State anti-discrimination laws
States are permitted to establish laws, guidelines and policies provided they don't conflict with federal law. Some states also have laws that may provide additional protections for students with diabetes. Therefore, it is necessary to be familiar with the rules that apply in your state.
Taking Action Against Discrimination
Diabetes does not have to interfere with your child having a positive school experience. Parents and schools have the same goal: to ensure that students are safe and that they are able to learn in a supportive environment.
If you are faced with a school that does not comply with ADA, Section 504 or IDEA you must first take the time to educate the school administration regarding the applicable laws to insure they understand the laws and your child's needs.
If the school has been notified regarding a diagnosis of diabetes and verified, and that the student/parents have requested reasonable accommodations to deal with this medical issue, the school is required by law to make the approved modifications to allow the child to fully participate and benefit from all school activities and programs.
However, the school can refuse to grant a request for an accommodation that is not specifically documented. School personnel do not have the right to confidential medical information. They only need to know what needs to be done to guarantee equal opportunity for the student. Any individual member of school staff who fails to comply with the approved medical and education plan can be held personally liable.
Schools that still refuse to cooperate should be advised that you are requesting preparation of an Individualized Education Program (IEP) and a Section 504 Accommodation for your child. At this point, the school must meet with you to negotiate the special services that your child requires.
If your school still refuses to comply, you should file a complaint with your state's department of education. This is the first step in the process of litigation against your school system.
Centers for Disease Control
National Diabetes Education Program
Helping the Student with Diabetes Succeed: A Guide for School Personnel.
U.S. Department of Labor
Jameson, Paula L. ARNP MSN CDE Helping Students with Diabetes Thrive in School From “On the Cutting Edge”. Newsletter of the American Dietetic Association’s Diabetes Care and Education Practice Group. Summer 2006, pp.26-29.
Updated February 28, 2013
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