The Individuals with Disabilities Education Act (IDEA) is a federal law that ensures special education and related services are available to children with disabilities. First enacted in 1975, it has been amended several times over the years to broaden equal access to education.

Now, New Jersey Congressman Chris Smith has introduced a bill to amend the IDEA once more.

He wants to clarify that the term ‘‘child with a disability’’ includes a child who needs special education and related services due to a health impairment resulting from Lyme disease or another tick-borne illness.

I think this is a good idea.

As my family found out years ago—and as families continue to discover with disheartening regularity—school officials often know little about Lyme disease and related conditions. Especially about how they can affect a child’s abilities in the classroom.

As a result, children with Lyme are often ill-served by the educational system. (And parents who try to get their child the educational accommodations they need are sometimes viewed as trying to game the system. Ask me how I know this.)

Here are some of the ways that Lyme disease can make it difficult for children to keep up with schooling: sleep problems, fatigue, pain, sensitivity to light and sound, and blurred vision. (To name only a few.) Furthermore, children whose brains have been affected by Lyme disease may find it hard to process information and organize their time.

In our book When Your Child Has Lyme Disease: A Parent’s Survival Guide, Sandra Berenbaum and I devote two chapters to the educational challenges faced by students with Lyme disease. We note:

Many students with Lyme don’t look sick. Thus, school staff may not appreciate how ill these children actually are, and may fail to grasp why a student needs special consideration…Educators with a better understanding of how Lyme impacts schooling may be more willing to find ways to help the student.

What the legislation says

The Smith bill states in part:

Schools, teachers, administrators, special services teams, and medical personnel are often not aware of the issues caused by Lyme disease, and the children with Lyme disease are being improperly classified, may even be labeled as ‘‘fakers,’’ and generally do not receive the type of help educationally that other children who have some of these symptoms routinely receive due to their disability.

PURPOSE. It is the purpose of this Act to increase the recognition of the broad range of disabilities caused by Lyme disease that affect education; and to enhance educational services for children with Lyme disease in a manner consistent with the Individuals with Disabilities Education Act.

Click here to read the entire bill: 2021_IDEA-Lyme-Bill-

Update: The bill, HR 3636, has been assigned to the House Committee on Education and Labor. Follow the bill here.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.