With so many things to worry about when managing, day-to-day, a child's Type 1 Diabetes, it is upsetting that, in 21st Century America, discrimination at school proves a real concern.
Sad to say, diabetic children often find themselves not getting the care they need at school, or more importantly, not being allowed the same advantage or access to education that their classmates may have. Of the over 150 discrimination-related requests for help logged to the American Diabetes Association call center from across the country each month, about 60% of these are school-related.
Discrimination at school can include not allowing a child to attend a school, program or field trip because they are diabetic; not permitting parents to be involved in care; forcing children to miss school work in order to leave the classroom to manage their condition; or, not identifying children with the condition and their respective educational needs.
A common occurrence is a diabetic child being required to leave the classroom to go to another room or to the clinic to either test his blood or to give an insulin injection, in reality potentially inhibiting his access to education. Repeated absences can add up to large amounts of time out of the classroom and important missed work. One mother I met calculated the amount of time it took her six-year-old daughter to walk to the clinic and back. She then multiplied the time by the number of visits per day her kindergartner made to the school clinic for blood checks (which was typically four visits per day) and determined that her daughter would spend about 1.5 years walking back and forth to the clinic during her tenure in elementary school. School administrators took notice. (As a side note: Since most testing and injecting is on a regular schedule and the equipment is completely portable, why can't the nurse come to the student?)
Another consideration is how hypoglycemic highs and lows can affect a child, particularly during stressful times like testing. For example, during standardized achievement tests, diabetic children may need to take breaks to test their blood, snack or to inject insulin. Often those proctoring these exams are not a child's typical teacher, and may not allow such measures. My son was accosted by one such proctor during his Standard of Learning (SOL) test for history (SOLs are standardized tests taken in the state of Virginia). When he tested his blood immediately before the exam to ensure that his blood sugar wasn't going low after running sprints in gym class the period before, the proctor publicly berated him for being "ridiculous," and "wasting valuable time." When he accidentally dropped his test strip on the desk, the proctor continued and announced that his behavior was "unacceptable." In this proctor's defense, she apologized to my son after the exam when she'd been told by a colleague of his condition.
While previously I have worked with the teachers and administration to make them aware of my son's condition and requirements, this most recent incident has pushed me to formalize that awareness and requirements by putting a "504" Plan in place for him.
The Nuts and Bolts: What is a 504?
A "504" is a plan put in place by the school and parents to help a child access education like everyone else, including all programs, activities and classroom work, and can address the issues noted above. It comes from Section 504, which is a part of the Rehabilitation Act passed in 1973, and offers protection to people with disabilities against discrimination in any program that receives financial monies from the federal government. This includes all public schools and those day care centers and private schools that receive such funds. People that qualify for protection under Section 504 are those that have a mental or physical impairment that impacts and limits one of the major life activities. Included in this is a major bodily function, such as the endocrine function. When a child with diabetes is evaluated for a Section 504 plan, he is considered as he would be without the help of insulin. Those schools that do not comply with this regulation will be at risk of losing their funding.
Working in tandem with Section 504 is the American with Disabilities Act, which does not allow any school or day care to discriminate against children with disabilities. Schools run by religious institutions are exempted. Effective January 1, 2009, the Americans with Disabilities Act Amendments Act (ADAAA) expanded the list of life threatening life activities to include major bodily functions, like endocrine functions, and also disallows insulin to be considered as a "mitigating measure" when considering if a child has a disability.
Putting The Gears In Motion
The road may not be easy to getting a 504 plan for your child. The first place to inquire about setting up a 504 Plan is with your school administrator. Although schools are required to identify those children that are eligible, some administrators may not want to take on the extra work putting a 504 Plan in motion. Still others may not really think that it is necessary and will counsel parents against seeking a 504.
As a parent, your number one defense will be to arm yourself with as much information as you possibly can. Refer to the ADA's site and sample plan for background. Know the players that will be involved in the process, which can include: the school administrator, the school nurse, a child's teacher(s), school system psychologist, and school system social worker. Consider consulting with some or all of these players before an initial meeting to explain your reasoning for the request of a 504 plan and to gauge what their position may be.
For others, the road may prove less rocky, and the management of diabetes may fall under a pre-existing IEP, or Individualized Education Plan, provided for by the Individuals with Disabilities Education Act (IDEA). These plans pertain to children who may need special education services in order to access and benefit from schooling. Fortunately, this was a path I was able to take.
This process may only see a diabetic child through school, and not into post-secondary education or the working world. Yet, at least two very recent events can allow us to take heart as our diabetic child grows up and enters the world that discrimination against diabetics will become less frequent: the nomination by President Obama of Judge Sotomayor, a Type 1 diabetic, and the ruling in favor of Jeff Kapche.
Maybe the sky will be the limit after all for everyone, diabetic or not... as it should be.
Published On: May 28, 2009