I’m saying could…I’m not entirely sold on the 504 plan being the saving grace for all kids with celiac disease. But you should know it’s an option that could help your family make great strides in getting gluten-free understanding and maybe assistance for your child in school.
Full disclosure here…I have not had a 504 plan for Emma during all of her years in elementary school. Working with teachers has been pretty good since the beginning. Lunch is what has been the big stickler for me. And last year, the Anoka-Hennepin District added a gluten-free lunch menu which currently feeds at least 10 children. However, I believe it is possible that she may need one when she goes into middle school a year from now (to manage home ec).
What is a 504 Plan?
According to the American Celiac Disease Alliance,
“Section 504 of the Rehabilitation Act of 1973, a federal civil rights statute, is designed to prohibit discrimination on the basis of a disability in an educational program or institution. This prohibition extends to any educational institution accepting federal funds. Students with a disability under this Act are afforded accommodations and modifications to their educational program to ensure equal access. Celiac disease may be considered a disability under this law.”
However, celiac disease is not specified in this statute. While many parents can see where celiac fits in this definition, it can take some work to show a school that your child may need special accommodations.
The National Foundation for Celiac Awareness in fact says,
“Celiac disease by itself does not qualify a student for services. The illness must cause a substantial limitation on the child’s ability to learn or other major life activity, but the illness combined with other factors may. Each candidate pursuing a 504 Plan must make an individualized argument for why he or she should qualify and why lack of accommodation would be detrimental to their education (be it academic, social, emotional, cultural, or physical).”
What accommodations does my child need?
One of the first things to do is find the 504 coordinator for your child’s school, then tell them you’re interested in starting a 504 plan for your child. You will most definitely need a letter from your child’s doctor as well.
The parent(s) and school staff will meet likely several times to agree on a plan for your child. The ACDA highlighted some areas that will or should definitely be discussed:
• Objectives and goals of the plan
• Meals and snacks
• Bathroom access
• Classroom activities (art projects)
• Field Trips / extracurricular activities
• Emergency evacuations / shelter-in-place
• Parental notification
• Emergency contacts
The Children’s Hospital of Boston details the areas where you should be getting help: the class room, art, etc. Some examples of what some celiac children have in their 504 plans include:
“Student can not use any of the following materials for classroom projects: play dough, paper mache, fruit loops and cheerios and other gluten containing food, pasta, flour, paste, envelope and stamp adhesives. Parents will provide a list of alternative materials if the class plans to use any of these materials.”
“Products commonly used in the art room will be reviewed to determine that they are gluten free. Any changes in art products will be communicated prior to instituting the change. (e.g. paper mache and play dough)”
The goal is to have educators and parents with the same expectations. The 504 Plan holds people involved accountable for what they’ve previously agreed upon, with the hopes of getting your celiac child through the school without any accidental glutenizations.
Should we have a 504 Plan?
So why wouldn’t everyone get one? I’m not sure I can answer that. I know for me it is a process I felt wasn’t necessary until the school gave me a reason not to trust them (for some of you, insert your laugh here). Since Emma started school five years ago, she hasn’t been poisoned by an art project or been given a gluteny cookie. But I have been very lucky, even when Emma was little she only ate things she was confident were gluten-free.
If you turn that around and have a child that’s new to celiac or a child having trouble speaking up for him or herself about the gluten-free diet, then I think parents have every reason to pursue a 504 accommodation. You know your child better than anyone else. It may be hard work, but it will be worth it for your peace of mind.
As always if you have tips or suggestions from your own personal experience, feel free to add them to the comment area below!