Legal Issues, Parenting

Free and Appropriate Education: Your child’s civil rights and diabetes

Your child with diabetes has a right to a free public education. No public school in the United States can legally refuse to educate a child with diabetes – nor can they legally require a parent to come to school to provide diabetes care.

Federal and state laws protect your child’s rights in public schools

Federal (and many state) laws require that certain accommodations be made for your child with diabetes. Sadly, there are also many states that limit those rights. The Americans With Disabilities Act (ADA) and Section 504 laws apply to any educational facility receiving federal funds, as well as to private schools and child care centers, but do not apply to schools owned by religious organizations.

Unfortunately, these laws are often ignored by individual school districts and children with diabetes are either turned away, discouraged from attending, or the care provided is so substandard that the child’s safety is compromised. This type of discrimination is a civil rights issue and you may need legal representation.

Recently, parents of children with diabetes that were discriminated against in northern California school districts filed a class action suit against the state (see sidebar on the right), and many parents are filing individual law suits in other parts of the country.

Education civil rights laws

Three federal laws provide opportunity and protection to persons with disabilities: Section 504 of the 1978 Rehabilitation Act; the Americans With Disabilities Act; and the Individuals with Disabilities Education Act.

Section 504

Section 504 of the 1978 Rehabilitation Act is a civil rights law that prohibits schools and child care facilities (as well as many other institutions and businesses) that receive federal funds from discriminating against people on the basis of disability, and this does include private schools.

According to Wright’s Law:

Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities. Section 504 ensures that the child with a disability has equal access to an education. The child may receive accommodations and modifications.

Unlike the Individuals with Disabilities Education Act (IDEA), Section 504 does not require the school to provide an individualized educational program (IEP) that is designed to meet the child’s unique needs and provides the child with educational benefit. Fewer procedural safeguards are available for disabled children and their parents under Section 504 than under IDEA.

Americans With Disabilities Act (ADA)

The Americans With Disabilities Act is also a civil rights law that protects students with disabilities, including those with diabetes. This law protects students in both public and private school settings — unless the school is run by a religious entity.” Courts have found that children with diabetes are covered by BOTH the ADA and Section 504 laws.

Individuals With Disabilities Education Act (IDEA)

The IDEA is the federal law that funds special education services for children with disabilities. According to Francine Ratner Kaufman, MD, head of the division of endocrinology and metabolism at Children’s Hospital in Los Angeles, in order to qualify under the IDEA, “a student’s diabetes must impair his or her ability to learn so that the student requires special education.” Children with diabetes may suffer cognitive problems when blood glucose levels are either too high or too low. They may benefit from simple accommodations like not having to take tests when glucose levels are abnormal, or being permitted to have a snack during long exams.

While these three federal laws make reasonable provision for children with (disabilities) diabetes individual states may have laws that undermine the effectiveness federal laws. State laws may restrict who can provide care to a diabetic child, which can make it impossible for a child to attend school safely. As as example, in California no one but a licensed nurse can administer insulin via an insulin pump yet more than 70% of all California schools do not have a nurse on site. Parents either provide care for their child by coming to school to give insulin, or rely on the child to do the administration of their own insulin pump boluses. More than one parent has even resorted to programming an extended bolus throughout the school day in advance, to attempt to cover lunch time; a dangerous, and unfair position to put any working parent or child with diabetes in.

The American Federation of Teachers(AFT) has made it their goal to see that even more states follow the practice of using only registered nurses for administering diabetes care but offer no remedy for how to employ more nurses in schools. Some states have adopted better laws for our children (below) and more states may follow soon. Much of these positive changes are due, in part, to the tremendous effort by organizations like Children With Diabetes and the American Diabetes Association (ADA). Still, even when laws exist they often are not adhered to and it is left up to individual parents to fight schools and seek enforcement of protection law.

Public schools are required to accept children with diabetes, but they can make the experience so difficult and even dangerous that parents often have little choice but to homeschool or find other alternatives. (IOH is concerned about the safety of diabetic children in school and would like to hear about your own negative experiences – as well as positive ones.  We contact schools in non-compliance, and report them by name on our website.)

The American Diabetes Association is working in several states to pass laws to make sure that there are trained school personnel available to provide assistance to students with diabetes and that laws and rules are applied consistently throughout the state.

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