One of the first things that I was asked when I started attending support group after my son was diagnosed was if I had gotten him a 504. Of course being new to this “my child has a chronic illness” thing, I wondered what they were talking about. It didn’t take me long to figure out how it is such a necessary step we can take when advocating for our children.
If your child is newly diagnosed with IBD and you have not heard about a 504, well here goes. Section 504 is part of the Americans with Disabilities Act. It covers the educating of children with disabilities and states that a child cannot be discriminated against, failed, or kicked out of school because of their disability. And yes, IBD is considered a disability under the ADA. Setting up a 504 needs to be done by the coordinator at the school. Just ask who the coordinator is and schedule and appointment. The needs of the student are assessed by the teachers and parents. Sometimes the child’s doctors can have input. In the end is a list of accommodations that a student can get if needed because of their illness. Some of the most common examples are bathroom passes so they can leave the classroom when they need to go or not counted tardy if they are late to class. The normal school attendance policy does not apply. Alterations to makeup work can be made. Sometimes is it a quality not quantity type of situation with the makeup work. Testing schedules can be changed if students are affecting by stress too much. Also, timed tests can be changed to “stop the clock” testing so a child can use the restroom. Other accommodations include having snacks when needed or breaks in the nurses office to lie down. It all depends on what each child needs. Each year the 504 needs to be reviewed and updated. The team of parents, teachers and administrators will get together to go over it and sign it. As the student gets older, they begin to participate in the meetings as well.
It is extremely important to get a 504 for your child. I have heard it is much easier to get the 504 in the lower grades, than in high school. This documentation will follow them from school to school all the way through to college. That’s right. Your child can get accommodations in college as well. Each campus will have a disabilities office. Make sure to register with them at the beginning of the year. They will be helpful dealing with some of the college professors.
One thing to keep in mind about 504’s is that it only applies to public school. If your child attends a private school, they will not have a 504. That said, you can ask what other ways you can accommodate for your child at their school. I work for a Catholic school and know that they provide medical plans for children with chronic illnesses. But this is the only one I am familiar with. Since private schools are run by different organizations, I can only imagine how different it can be. The best thing to do is ask.
This is the basic information that I would give to people attending the support group that I facilitate. But in my next blog, I will share with you my own personal trials and experiences with my son’s 504.