Steps to a 504 Plan by Katarina Mollo, RD at National Celiac Association
NCA Provides a Thorough "School Packet" with Information and Legal Resources
BeyondCeliac.com's Back to School Toolkit includes 504 Plan guidance and lunch/snack ideas for GF students
Important Notes About 504 Plans
Students are entitled to be educated free from discrimination and is entitled to privacy about their disability if that is your preference. A 504 Plan is likely one of the best ways legally to set your child up for a Free Appropriate Public Education (FAPE) under the law at public and charter schools. It's really not that difficult to establish, and 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.
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. A 504 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. 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.
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.
We highly suggest parents read the U.S. Department of Education, Office for Civil Rights, Parent and Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools (December 2016).
(Notes: Check out page 3 "physical or mental impairments" and page 4 "major life activities" definitions)
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. A 504 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. 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.
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.
We highly suggest parents read the U.S. Department of Education, Office for Civil Rights, Parent and Educator Resource Guide to Section 504 in Public Elementary and Secondary Schools (December 2016).
(Notes: Check out page 3 "physical or mental impairments" and page 4 "major life activities" definitions)
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
The above 2 practices should always be possible, but if there is a reason they are not:
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 students 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 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.
1. Use non-food materials in the classroom
2. Use non-food rewards in classroom
The above 2 practices should always be possible, but if there is a reason they are not:
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 students 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 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.
Advocacy Resources and Tips
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.
Creating a 504 Plan is often a very smooth process, but we've included information below based on our experience that may be helpful if you run into push back:
Within our San Diego support group, we have seen several instances where a board certified educational advocate (hired at hourly rates) has been very helpful to the 504 Plan process, especially when schools were frequently not following a 504 plan. Our parents have also reported that including the district dietitian in the 504 Plan meeting to be very useful so that they can educate the staff who interact with your child (note-some are familiar with celiac disease and some are not). Our support group has sometimes been brought in as an advocate to provide general education to school districts, school nurses, and dietitians about managing celiac disease.
In the past, we have heard of middle and high school administrations telling parents their children no longer qualified for the 504 plans because "their grades were too good." Good grades should never be a legitimate cause to end a 504 plan for a child with celiac disease.
In past difficult situations, parents in our support group have been advised to consider communicating with all 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.
Creating a 504 Plan is often a very smooth process, but we've included information below based on our experience that may be helpful if you run into push back:
Within our San Diego support group, we have seen several instances where a board certified educational advocate (hired at hourly rates) has been very helpful to the 504 Plan process, especially when schools were frequently not following a 504 plan. Our parents have also reported that including the district dietitian in the 504 Plan meeting to be very useful so that they can educate the staff who interact with your child (note-some are familiar with celiac disease and some are not). Our support group has sometimes been brought in as an advocate to provide general education to school districts, school nurses, and dietitians about managing celiac disease.
In the past, we have heard of middle and high school administrations telling parents their children no longer qualified for the 504 plans because "their grades were too good." Good grades should never be a legitimate cause to end a 504 plan for a child with celiac disease.
In past difficult situations, parents in our support group have been advised to consider communicating with all 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.
Your child is not required to participate in any of the meetings about their disability or 504 Plan if preferred, and in the past one of our educational advocates recommended they not be if there are concerns about the plan or meetings becoming contentious with the school administration.