The 504 Plan For School & More Resources

​Creating a 504 Plan for Your Child with Celiac Disease

EXTERNAL LINK:  Handout Created by Dietitian EA Stewart 
Steps to a 504 Plan (by Katarina Mollo, RD with the National Celiac Association in Boston)
  • ​How to Create a 504 Plan for Your Child with Celiac - Handout Created by Dietitian EA Stewart from Raising Our Celiac Kids get together on 5/19/19
  • Parents have to learn to advocate for their child with celiac disease and teach their child to advocate for themselves.  Start by learning your child's rights related to their celiac disease disability in public schools.  To initiate the process, a parent must generally request a 504 plan team meeting in writing to the school's counselor or principal.  Creating a 504 plan is often a very smooth process, but we've included tips below based on our experience that will be helpful if you run into a lot of pushback.
  • It can be helpful to request that the district dietitian attend the 504 meeting.  Sometimes they are familiar with celiac disease and sometimes they are not, but educating them about it and requesting as part of the 504 plan that they in turn educate the staff who interact with your child has been very useful in our parents' experience.
  • If your child with celiac disease is in a public school, a 504 plan is likely one of the best ways legally to set your child up for a Free Appropriate Public Education (FAPE).  It can significantly improve their quality of life,  decrease their risk for cross contact, and lead to less incidents where they are tempted to fit in and "cheat" on the diet. You are likely also blazing the path for many other students with celiac as you educate the school staff about celiac-safe practices. 
  • The plan rolls over from year to year and helps consistently inform a changing array of teachers and substitutes who often don't understand much about celiac disease or cross contact.  A 504 plan entitles your child/family to procedural safeguards and helps protect your child from discrimination because of their disability or retaliation in the case of a complaint.  It's really not that difficult to establish.  Also, your child is not required to participate in any of the meetings about their disability and 504 plan if you prefer that (one of our educational advocates usually recommends children not participate if there are concerns establishing this would be contentious with the school administration).  
  • We highly suggest parents read the Dept. of Education's handbook for step by step guidance and FAQ:
             https://www2.ed.gov/about/offices/list/ocr/docs/504-resource-guide-201612.pdf

USDA's Guide for Accommodating Children with Disabilities in School Meal Programs

"Specific guidelines for recipients operating public elementary or secondary schools are included at 7 CFR 15b.22. These recipients must provide a free appropriate public education to all children with disabilities within their jurisdiction, regardless of the nature or severity of a child’s disability. No additional fees, except those also imposed on the families of children without disabilities, may be imposed on the families of children with disabilities [7 CFR 15b.22(c) and 7 CFR 15b.26(d)]."

From the USDA's Guide for Accomodating Children with Disabilities in School Meal Programs

DO's and DON'Ts in the Classroom (For Teachers and School Dietitians)

Best Practices in the Classroom for Children or Teens Who Have Celiac Disease
1. Use non-food materials in the classroom
2. Use non-food rewards in classroom
(1) or (2) should always be possible, but if there is agreement that should not be the case: 
DO:
  • Do always communicate with parents (not the minor – child/teen) at least 2 school days in advance any time a food will be served in the classroom and let parents know how it will be used, exactly what date it will be used on, and whether it will be offered to be eaten. Include exact images of all product(s) including brand(s), flavor(s), container size(s), and ingredients, when student may be ingesting, inhaling or touching the food.
  • Do be inclusive and open to trying similar but celiac-safe parent approved foods instead so that everyone can equally participate. Do keep the work surfaces clean that a child/teen with celiac may use. Use a spray bottle and paper towels (INSTEAD OF antibacterial wipes, a cloth towel, or a sponge) to clean the surfaces where food particles were present. Do respect the student’s right to privacy and confidentiality about their disease.
  • Do give student immediate access to the bathroom and water whenever needed.
  • Do understand when they are exposed to gluten it may take anywhere from weeks to months to heal during which time they may exhibit symptoms such as irritability, anxiety, or difficult concentrating. Do have all students wash their hands when done working with or eating food in the classroom.
  • Do refuse food from being brought into the classroom when the student’s 504 plan isn’t followed.
  • Do be aware crumbs can make a child/teen with celiac sick and can have short and longer term consequences for the student.
  • Do let the child/teen with celiac eat the first portion when serving a food to a class to help prevent cross contact.
DON'T:
  • Don’t create a situation which excludes or removes children/teens from classroom. Don’t call attention to the child’s/teen’s disability publicly. They have a right to privacy/confidentiality about their disability. Additionally, this will lead to unwanted to questions from other students about what happens when their disease is triggered which is very embarrassing for them and can lead them to want to blend in more and “cheat” next time.
  • Don’t allow flour or concentrated gluten paste in your classroom. Don’t exclude certain kids in the class who can’t eat a food. Find a food that allows them to participate equally (or get an agreed upon comparable substitute) to the food being served in the class.
  • Don’t assume a child can just read a label or look online to determine if a product is safe for the child/teen with celiac disease, as this is often not possible without additional research.
  • Don’t assume celiac disease is a type of food allergy or that there is any treatment or medicine for it (like an epi-pen). Don’t ask the student if they mind deviating from their 504 plan.
  • Don’t put children/teens in a situation where they would be excluded from an activity or removed from classroom.
  • Don’t assume the child/teen will always be aware that they have ingested gluten. 
Download PDF 

Are "Good Grades" Grounds for Disqualification? 

 We mention the two quotes below because in our support group, we have children with 504 plans for celiac disease, and in middle school and high school, the school administrations told parents our children no longer qualified for the 504 plans because "their grades were too good." This should never be a legitimate cause to end a 504 plan for a child with celiac disease.  If this happens to you, or if the administration is not following your student's approved 504 plan, you may want to file a complaint with the Office of Civil Rights for your state.  This is free and the school is prohibited from retaliating against you or your child for doing so.  Alternatively, you may want to hire a certified educational advocate to help educate the school administration about the correct Department of Education Guidelines for 504 plans. 
  • Here is the link to file an Office of Civil Rights (OCR) complaint: 
https://ocrcas.ed.gov/cas.cfm
  • Should the 504 plan creation or execution be especially problematic or contentious or if you feel your child's established 504 plan is not being followed, here is another tip.  If OCR needs to get involved to push back on the school, they will want documentation of the school's lapse and your communications with them.  OCR does not distinguish between your communication with the administration and with the teachers/staff in terms of you communicating with the school.   In difficult situations, parents in our support group have been advised to consider communicating with school staff in writing only and in the more contentious cases, bringing a digital tape recorder to 504 plan meetings (let everyone know you're doing that at least 24 hours in advance).  You can download a voice recorder for free or for a very low cost with most smartphones.

​Another Avenue to Make School Safer for Kids With Celiac: District Wellness Plan

​Your  School District must have a  Wellness Plan, as mandated by the FDA.  That has standards for all foods and beverages provided, but not sold, to students during the school day (e.g., in classroom parties, classroom snacks brought by parents, or other foods given as incentives). Wellness plans following federal guidelines may eliminate "junk food parties" in the classroom.  They are renewed every 3 years and parents can request to be on the Wellness Plan committees for a school district.

More About Managing Celiac Disease or Non-Celiac Gluten Sensitivity in San Diego Public Schools

Your child is entitled to be educated free from discrimination, and to receive a Free and Appropriate Public Education (FAPE) under the law at public and charter schools.  They are entitled to privacy about their disability if that is your preference.  And importantly, they are likely to be entitled to have a 504 plan at school, with the ongoing accommodations and protections that provides. 

A 504 plan provides some legal accountability with the school for your student ensuring accomodations for your child are consistently followed, even when teachers change, administrators change, or substitute teachers are brought in and misunderstandings are more likely to occur.  Though slight modifications may be made every few years, a formal 504 plan can follow your child throughout elementary, middle, and high school and can be forwarded to public colleges to continue to ensure their changing needs are met.   

Unfortunately, sometimes well-meaning school staff do not understand celiac disease or non-celiac gluten sensitivity at all and do not realize the ways in which they may inadvertently discriminate against your child at school or put your child's health and learning at risk.   In middle school and high school, there is more peer pressure to fit in, and teens are notoriously more likely to be tempted to cheat on their medically necessary gluten-free diet when everyone else in the class is eating their "S'mores plate tectonics science experiment" and there is no comparable treat for your child. 

To initiate the 504 process in school, a parent first needs to formally request a 504 plan be established for your child from your school counselor or principal. There is no legal help required to initiate a 504 plan through your public school for your child, but if you feel you need help or you feel your child's school may not be fairly considering your child's needs,  board certified educational advocates are available (at an hourly rate) to provide a little or a lot of help.  The Department of Education's Office of Civil Rights (OCR) also provides guidance to parents and schools and follows up on complaints when a school is believed to not be following the law or established 504 plan complaint procedures. 

Within our San Diego celiac support group, we have seen several instances where an educational advocate has been very helpful to the 504 plan process. We also have children in our support group attending schools who were frequently not following their child's 504 plan.   After trying to resolve the issue with the teachers and school administration failed,  parents filed complaints with the Office of Civil Rights, and then saw the situation completely improve or resolve when the California OCR educated the school administration on the student's legal rights.  Our support group has sometimes in the past been also been brought in as an advocate to provide general education to school districts, school nurses, and dietitians about managing celiac disease.

Getting Started on the 504 Plan:

See Beyond Celiac's Getting Started Guide for those with Celiac Disease and Non-celiac gluten sensitivity - includes 504 plan guidance and lunch/snack ideas.  BeyondCeliac.com also put together a very useful Q&A with a pediatric gastroenterologist at the Center for Celiac Disease at The Children's Hospital of Philadelphia (CHOP) to answer questions about children and teens with celiac disease. 

​Also, see their new video on how celiac disease works if you're interested.