The Problem

A diagnosis of Type 1 diabetes is devastating. Shocked, scared, and vulnerable, children and their parents must nonetheless learn how to provide daily care and adapt to their changed lives. The burden of this disease is further exacerbated when misguided schools refuse to accommodate students with diabetes and force parents to be at school all day, every day to test blood glucose levels, administer insulin, and even make sure that students aren’t shut out of field trips and after school activities.

Despite federal laws such as The Rehabilitation Act and The Americans with Disabilities Act, many school policies are still based on fear and misinformation, leaving a disquieting number of families alone in their struggle to make schools safe for their children.

Without something more than aggrieved parents to enforce these laws, they are, for all practical purposes, toothless. Without specific, state legislation, students with diabetes face discrimination at school—and worse.

Consequences

Parents who care for children with chronic health conditions like diabetes, asthma and allergies already perform the heroic every day. They shouldn’t have to add a federal case to their to-do list just so their kids can be as safe at school.

But they do.

One mother in Illinois filed a complaint against her child’s school through the Office for Civil Rights and campaigned for more than 2 years to set the situation right for her child. Rather than train  staff to perform simple tasks, the school called 911 every time the child needed help with routine diabetes care.

Another parent had to build a team of legal and medical experts to fight a school district that implemented a “No Needles, No Blood” policy, instituted in retaliation to the child’s diagnosis. This school, like others, just wanted the “problem” to go away.

A high-school student was prohibited from carrying her equipment and medication, forcing her to jeopardize her health and safety. Reasonable attempts by the girl’s family to resolve the policy conflict ended with the school retaliating to such an extreme degree that the case is now before a federal judge.

Other families keep their children on less intensive insulin therapies that do not require a lunchtime injection just to avoid the possibility of losing the goodwill they currently enjoy at their child’s school.

A System of Discrimination

Before The Care of Students with Diabetes Act became law in Illinois, parents had no local authority to rely on. Parents could appeal to school principals or school boards but if those entities authored the misguided policies in the first place, they were unlikely to prevail.

Parents could also complain to the State Board of Education but a recent study in Illinois shows that without a lawyer it’s highly improbable that parents will find relief. (See: Access and Equity in the Due Process System: Attorney Representation and Hearing Outcomes in Illinois, 1997-2002, Melanie Archer, Ph.D., December 2002).

Parents only recourse then was to file a complaint with the U.S. Department of Education’s Office for Civil Rights or file a federal lawsuit. But the result of those complaints—no matter the outcome—was discrimination.  Why?

Because protections afforded by federal law become available only to those children whose parents could afford to argue and sustain a case, sometimes over a period of years.

Building a Sustainable Solution

At first glance, a nurse in every school appeared to be the ideal solution—and not just for students with diabetes, but for all students who have to manage chronic conditions such as asthma, diabetes, food allergies, and seizure disorders.

Upon further examination, though, a staffing mandate is not the answer. No one, not even a school nurse, can be available at all times. There are days when the school nurse will be out sick. There will be moments when the nurse will be called to two, maybe three places at once. There are field trips, after school events, and extra-curricular activities but a single school nurse cannot be everywhere.

The Care of Students with Diabetes Act clarifies federal protections, establishes the standard of care for students with diabetes, and enables willing, capable teachers and administrators to partner with parents and healthcare providers and learn how to provide routine and emergency care. It ensures that children with diabetes remain safe, healthy, and in school and that they have access to the same educational opportunities and activities as other children.

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