When your child has celiac disease or gluten sensitivity, you may need some accommodations from her school for example, you may want to be notified about any special foods that will be served in an elementary school classroom, or you may need to pull your child out of a baking class in middle or high school.
Your child may even be eligible for free or reduced-price school lunches, which means you'll need the school to prepare safe gluten-free food for her to eat.
It's possible to work these issues out informally with your local school officials, and you may find that they're receptive and eager to help. However, when dealing with bureaucracies such as school districts, you may want to have a written plan of action in place, rather than relying on good will and spoken promises. That's where a 504 plan comes in.
504 Plans Protect Children With Conditions Including Celiac Disease and Gluten Sensitivity
504 plans are named after a specific section in the Americans with Disabilities Act. They specify that a child with a disability (which can include celiac disease and severe gluten sensitivity) cannot be excluded from participating from federally-funded school programs and other activities, despite that disability.
The plans, which are developed jointly by the child's parents and school officials, spell out specific accommodations that the school district is obligated to provide for a student in order for that student to have the same opportunities to participate in school activities as her peers. Once a 504 plan is in place for a student, the school is expected to abide by it.
Accommodations can range from measures that are fairly simple and inexpensive (for example, an extra set of textbooks to keep at home for a student with a learning disability) to measures that are much more costly and extensive (for example, full home instruction for a child who's unable to attend classes).
In the case of a student with celiac or gluten sensitivity, accommodations most likely would cover food in the classroom and cafeteria, but also should address classroom activities that use gluten-containing foods. The 504 plan also may address accommodations for students who fall behind due to glutening symptoms.
Elements To Consider Including In Your 504 Plan
When crafting a 504 plan for your child, make sure you broaden the plan's scope to account for as many activities involving gluten as you can. Here's a list of elements you may want to include:
Food provided to your child in the classroom. Snacks and special celebrations are extremely prevalent in elementary school and may continue on to middle school. You should make certain that teachers and other school officials understand not to give your child any unsafe foods most parents accomplish this by providing safe snacks to the teacher in advance. Regardless of the 504 plan, you'll need to continue extreme vigilance on this until your child is old enough to read labels and determine safe snacks for herself.
Food provided to your child in the cafeteria. Your child has the right to be provided with gluten-free food in the school cafeteria, especially if you are eligible to receive free or reduced-price breakfasts and lunches. If this is important to you, you should include it in your child's 504 plan. In order to accomplish this in practice, however, you'll likely need to work extensively with the school's dietitian and cafeteria staff to educate them on the gluten-free diet and how to avoid gluten cross-contamination.
Cleanliness in the classroom and cafeteria. Have you been in a school cafeteria lately? Crumbs are everywhere. Classrooms sometimes aren't much better, since students frequently are allowed to munch on snacks (almost always gluten snacks) at their desks. If you have a young child who isn't yet capable of protecting herself from cross-contamination, you may need to ask school officials to help. Specify that her table at the cafeteria be wiped clean with a safe cleanser and clean cloth before she eats there, and that her area of the classroom be kept clean in the same manner.
Use of a microwave to heat lunch. If you prefer to send food to school that must be heated, you may want to ask the school to provide your child with a clean microwave to use. For younger children, you may also need to ask a teacher or other staff member to help with the reheating. You can address all this in a 504 plan.
Bathroom privileges. Not every child with celiac disease or gluten sensitivity suffers from serious, potentially uncontrollable diarrhea in fact, I've known plenty of kids with constipation as their main celiac symptom. However, if your child does suffer from diarrhea when she gets glutened, her 504 plan should emphasize that she can visit the restroom whenever she wants. Most schools place limits (in some cases, severe limits) on when children can leave the classroom to go to the restroom.
Use of gluten-containing supplies in the classroom or art class. Play Dough contains gluten and paper mâché almost always is made with wheat flour. Neither is safe for a child with celiac disease or gluten sensitivity to use. In the case of paper mâché, the airborne gluten when the paste is mixed will give her symptoms if she's in the same room, even if she's not participating in the activity. In elementary schools, classes also frequently learn math or create art with gluten-containing pasta pieces or cereal. Your 504 plan should specify that alternatives to these gluten-containing supplies must be used to keep your child safe, preferably for the entire classroom (otherwise, the entire room will need to be cleaned thoroughly before it's again safe for your child). You'll need to advise the school on what to purchase or even supply gluten-free alternatives. Surprisingly, these gluten-based activities don't always end when middle school begins some chemistry experiments (notably, making a baking soda volcano) also involve flour.
Home economics classes that ask kids to bake. Children and teens with celiac or gluten sensitivity shouldn't be in a classroom where other students are using flour or mixes, regardless of whether they actually participate in the activity. Home economics classes (these days, they may be called Family and Consumer Science classes or just Human Science classes) frequently require some sort of cooking or baking. Your 504 plan may want to specify that your student cannot participate in these activities; instead, you probably can arrange to get credit for work at home, or to substitute another class.
Field trips that include lunch, snacks or some other food element. If my daughter's class is going on a field trip, I normally send lunch with her (just as I do for regular school). However, you may want to include a clause in your child's 504 plan stating that any food (snacks or otherwise) provided during a field trip should be gluten-free. In fact, I wish I had had something like that in effect when the school bus made a surprise stop at a bakery following a museum outing, and my daughter was the only child who couldn't get a delicious snack.
Positive statements about celiac/gluten sensitivity from school officials. You'd think this would go without saying, but unfortunately, you may need to spell it out: teachers and other school officials should be prohibited from making negative statements about your child's problem with gluten. Sadly, I've heard of teachers who roll their eyes, or worse, make public negative comments about celiac or gluten sensitivity. In some cases, they even publicly blame the celiac/gluten sensitive child for "ruining parties" or other activities in the classroom. If this happens to you, immediately take it up with the school principal. However, to forestall any problems, you may want to consider adding this element to your 504 plan.
504 Plan Also May Include Illness, Treatment Details
It will be difficult if not impossible to get a 504 plan established if your child does not have an "official" diagnosis of celiac disease or gluten sensitivity from a physician. To obtain a 504 plan for your child, you'll likely need to provide details about her diagnosis and treatment. You also will need backup documentation and reinforcement from your child's treating physician, especially if you're asking for accommodations that the school deems unusual or excessive (i.e., if you're going beyond what others have requested for celiac children).
Even if the reaction from school officials is negative, you should stand your ground with the school system on your requests, especially if your child is particularly sensitive and reacts to gluten cross-contamination in her environment, as many do. School can be a very gluten-y place, and you need to be your child's advocate in getting as clean a learning environment as possible.
Your child's needs obviously will change and evolve over time you likely won't need to worry as much about Play Dough and classroom birthday parties for older children. However, you may need to worry about credit for Home Economics (or whatever they're calling those classes). You also may need to worry some about gluten's effects on your child's grades some celiac and gluten-sensitive kids miss a lot of school if they get glutened, which really can affect their grade point averages. Many also suffer from gluten-induced attention deficit-hyperactivity disorder, which obviously also can affect grades.
Overall, it really will help you and your student if you get school officials on your side, with or without a 504 plan. However, having a 504 plan in place can help forestall problems with an otherwise reluctant teacher or administration. It also can help if, despite your best efforts to build bridges with school officials, those friendly officials move on and leave you with officials who aren't as willing to make voluntary accommodations for your child with celiac disease or gluten sensitivity.
American Celiac Disease Alliance. Model 504 Plan. Accessed April 9, 2012.
National Foundation for Celiac Awareness. 504 Plan Roadmap for the Accommodation of a Student with Celiac Disease. Accessed April 9, 2012.