Education

There are two laws that apply to the accommodations kids may need in school, the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973. The IDEA is designed to meet the challenges of kids who need special education services. Section 504 is for kids with disabilities who don't necessarily need special education services, but who do need some help due to illness -- help because they are absent from school more than the norm, or because they have a food allergy or intolerance that needs to be accommodated, or because they have trouble taking notes or need extra time or exams -- things that don't require special education services, but that are real needs nonetheless. As an organization that focuses on chronic illness, we deal almost exclusively with section 504, and not the IDEA.

Whether a student is entitled to a section 504 plan of accommodation depends on whether she has a disability. A disability is an illness or condition that substantially impairs a major life activity. Walking, talking, seeing, hearing, writing, reading -- these are major life activities, but so are bodily functions like bowel, digestion, and the immune system. And of critical importance to students with chronic illnesses, the law says that episodic illnesses -- illnesses that come and go -- are disabling even when the student is in remission if they would be disabling when active. So, for example, if your child has ulcerative colitis that would substantially impair the major life activities of bowel and digestive function when the disease is active, she is considered disabled even when the disease is in remission.

How do you prove to the school that your child has a disability? Most of the time, a detailed letter from a doctor will be enough. Some schools want copies of medical records, and I would accommodate them to a point. Too often, schools want an unlimited release allowing them to get any records they want, or talk to the doctor whenever they want. The law does not require that you give them that much.

If your child has a disability, she is entitled to a section 504 plan. How do you get a plan? Ask someone in authority at the school -- the principal, a guidance counselor, the coordinator of 504 plans for the district (who usually is the same person as is in charge of special education) -- to convene a 504 meeting. They should do so without much resistance.

At the meeting, your child's teachers should be present, as well as administration from the school -- sometimes the principal, school nurse, guidance counselor, school psychologist, 504 coordinator -- along with you and, if old enough, the student. You may bring an advocate, a friend or relative -- anybody who helps you feel more comfortable.

The purpose of the meeting will be to negotiate a plan of accommodation for the student. It can be helpful if you go into the meeting with at least a list of the things you need -- stop the clock testing if your child will need to use a restroom more than the "norm" during exams; provisions for what to do if your child is absent for more than a day (things like a note-taker or tape recording, copies of handouts and homework assignments being sent home each day, the ability of teachers to waive homework assignments if they are otherwise convinced that the student has mastered the subject matter); provisions for what to do if your child cannot participate in physical education class; and so on. For a kid with ulcerative colitis, an anytime bathroom pass is critical. For a kid with peanut allergies, it's critical that the other kids wash their hands and their desks after they eat a peanut butter and jelly sandwich. For each child, the needs will differ, so the plan will differ.

The biggest hurdle is almost always tutoring. It costs money, and schools are hurting these days, so negotiating for a tutor is tough. Every school district with which I've worked has a general policy for all kids that if they miss 10 consecutive school days due to illness, they are entitled to 1 hour per day of tutoring. I've negotiated for more -- tutoring after fewer than 10 days, and/or for more than 1 hour per school day -- but it's a very tough battle, and one that you may not win. If teachers are willing to help your child via email, and/or to spend extra time with your child after he returns to school, that should be viewed as an important supplement to tutoring that you can and should ask for.

We have written a template section 504 plan for students with inflammatory bowel disease that you can find below. Even if your child doesn't have IBD, you may benefit from seeing the types of accommodations that we often request.

The law says your child is entitled to "reasonable accommodations." What's "reasonable" under any particular circumstances differs, and always, a 504 plan is the product of negotiation. Be prepared for give and take. You may not get everything you want. Rest assured, though, that if you negotiate a plan and it turns out not to be sufficient to meet your child's needs, you can always ask for another 504 meeting to discuss how the plan is falling short to see if it can be improved.

There are a couple of arguments schools make all the time that are worth anticipating. First, the school may say that your child is doing well in school and, thus, he doesn't need a 504 plan. However, although the IDEA does require that the student need special education services, section 504 does not require that the student be doing poorly in school. It only requires that they have a disability that requires accommodation. A child who needs accommodations related to food, for example, can be doing perfectly well in school but have the risk of seriously damaging her digestion if she comes into contact with wheat -- and wheat products are used in arts and crafts class, not just in the cafeteria. So the 504 plan would address those kinds of concerns rather than academics, but it's still entirely appropriate to address these concerns in a section 504 plan.

Some schools prefer individualized health plans (IHPs) rather than 504 plans. Typically, I resist this because it's not entirely clear how an IHP can be enforced. A section 504 plan is enforced by the US Department of Education Office of Civil Rights, and you want to have recourse to them if at all possible. In some parts of the country, the Office of Civil Rights has taken the position that an IHP demonstrates a student's eligibility under section 504. I would accept an IHP if a school were willing to put in writing that the IHP is evidence that the school has found the student to be disabled for purposes of section 504. That would allow recourse to the Office of Civil Rights even if the plan is called an IHP. However, if a school won't put that in writing, I would insist on a 504 plan.

Some schools insist that a section 504 plan is not necessary when a chronic disease is in remission. As I said above, since January 1, 2009, the law says that a chronic illness that would be disabling when active is considered disabling when in remission. I do not believe that it's smart for anybody -- you or the school -- to leave school issues related to the student's illness to a time of crisis, when your child is in the hospital or at home acutely ill, when all of your attention should be spent on the medical issues. At a time like that, it is going to be very beneficial to have a plan already in place. Most schools understand this once it's explained to them in this way.

Finally, if your child goes to private school, section 504 does not apply. However, private schools are public accommodations under Title II of the Americans with Disabilities Act. Thus, a student with a disability -- a substantial impairment of a major life activity -- is entitled to reasonable accommodations in private schools, too. The issue of tutors is handled differently with private schools, but school-based accommodations are the same in private schools as in public school.

For more information, see the article below on Educational Equity. For the most thorough explanation of school laws, consider purchasing our Know Your Rights handbook. Of course, you are always welcome to email or call us, as well.


Click here for the text of Educational Equity by Jennifer C. Jaff, Esq.

504 Plan - Template section 504 Plan for children with Inflammatory Bowel Disease. Created by Judith Leventhal, PhD, Leo Shea III, PhD, Janis Arnold, LICSW, Sharon Farkas, Beth Sher, and Jennifer Jaff, Esq.

The Chronic IIIness Initiative - a college-level program run by DePaul University where students with chronic illness can get all the flexiblity and support they need in order to obtain a college degree.

Advocacy for Patients urges readers to please share your feedback so we can evaluate the helpfulness of such literature.