Sick Kids

I'm working with a family in Autauga County, Alabama. Their teen-aged son has Crohn's disease and misses a fair amount of school as a result. The father is in the Army, currently deployed to Iraq, leaving mom to deal with the school, which is particularly rigid in their policies.

At first, the school refused to provide any accommodations of this child's disability under section 504 of the Rehabilitation Act of 1973 on the ground that the disability does not affect the student's ability to learn. Then I got involved and pointed out that section 504 does not require a showing that the physical disability results in a learning disability, and they agreed to write a plan of accommodation. However, negotiation of the plan terms was painful and slow. Finally, though, we resolved most of the issues.

The most difficult issue to resolve was what to do when the student misses school due to illness. We were able to agree on provisions that address instances when the student misses a couple of days of school. Where we got stuck was on what to do when the student is out for a longer time -- a week or two -- and falls behind in his work.

When the family was based elsewhere, the parents would simply notify the school if the student was going to be absent for a few days, and the school would provide instruction on a daily basis. The teachers would send home outlines and assignments, and provide some tutoring, thereby allowing the student to remain current in his classwork.

The Autauga County school District's policy for "homebound instruction" says that, when a student is out for 20 or more consecutive school days, homebound instruction in the form of one hour of tutoring per week is provided. Not only is one hour per week insufficient, but requiring that the student miss a full month of school before qualifying for homebound services is a guarantee that the student will fall far behind before getting any help.

The school hired a lawyer to negotiate this point. We ended up with a plan that provides that, if the student is out for 10 consecutive days, he is eligible for homebound services. We did not make any progress on the number of hours of tutoring per week, but at least we made sure the student could get services sooner.

Then the young man broke his shoulder and was absent for 10 days. His mom didn't think much about the school issues because the absences had nothing to do with his Crohn's disease. The child went back to school after Thanksgiving for about three weeks, at which point the school called the mother in, ostensibly just to go over where the student stood in his classes.

Well, she got ambushed by the entire 504 committee, which voted to place the student on homebound instruction whether he and his parents liked it or not. This was after he had returned to school for awhile and was doing fine, and was entirely capable of attending school.

And here's the kicker. The school essentially kicked him out of school and confined him to his home, but refused to provide homebound services without a doctor's note indicating that he needed the homebound services due to his illness. The doctor refused to write such a note because the student did not need homebound services due to his illness, which was in remission. So really, they kicked him out of school but refused to provide homebound services, which is tantamount to expulsion without a hearing or any opportunity to object.

The school actually takes the position that, if the child is absent alot, it cannot provide educational services to him, so he should be on homebound instruction. Where the logic is in this, I don't know. It's not like he would get any real instruction on homebound; one hour a week surely isn't a substitute for going to school every day. And when the child is healthy, he ought to be allowed to attend school. Any other rule deprives the student of his right to a free, appropriate public education.

The school's lawyer -- bafflingly -- defends the school's position on this ground, that the school has to provide the student with an education, and it can't do so if he doesn't come to school, so therefore he should not come to school!!! That's really what she said. "[T]he District has an obligation to provide educational services to [the student], which the District is unable to do based on [the student's] numerous absences. Accordingly, as [the student's] 504 team determined, his most appropriate placement is homebound." I swear this is true. I'm not creative enough to make this up. We have to provide an education, but we can't because the student doesn't come to school regularly, so we think he should not come to school at all, sick or well. And while he's at home, we won't provide him with any services, either.

We then presented a doctor's note to the school saying that the student is medically cleared to attend school. Now, according to the District and its lawyer, we have to wait for the school to convene another 504 meeting so that the 504 committee can vote to allow the student to return to school. The student is falling behind every day, and we simply have to wait until this large group of teachers and adminstrators can clear their schedules so the child can return to school.

Since when are the civil rights statutes intended to be used to prevent a disabled student from attending school when he's feeling well enough to do so? How dare this school use its obligation to provide this young man with an education as an excuse for kicking him out of school? This perversion of the law is nothing short of insane. Yet, our recourse -- filing a complaint with the U.S. Department of Education Office of Civil Rights, which we may still do if we can not reach agreement with the District on how this will be handled in the future -- would take months, at the least, to have any positive effect. In the meantime, we have to continue to press the school to allow the student to attend classes or he will fall further behind.

We do a lot of work with schools. I find it to be shocking. Until I started Advocacy for Patients with Chronic Illness, I had no idea whatsoever that this was such a big problem. The truth is that it's huge. Sick children being reported to truancy court for being out sick, even with a doctor's note. Children with digestive diseases being place on "lockdown" so they cannot leave class to use a bathroom because the teacher thinks they do so too often -- and then being sent home when they are fecally incontinent. School nurses refusing to take medication instructions from a parent, and requiring full access to the student's doctors and medical records without limit. School that insist on teaching an 8 year old child how to manage her own diabetes, regardless of whether the parent consents. Children with food allergies and intolerances being segregated rather than simply making the other kids wash their hands with soap and water and wipe off their desks after they eat.

How dare we treat sick children this way?

Every one of you reading this should be outraged. How dare we? Jennifer