There is a false assumption that schools already have adequate policies and procedures in place that cover the specific needs of all children with food allergies. I have been guilty of this assumption myself, before my daughter started public school. You hear that a school has a “nut free" lunch table and you assume that they understand how to manage all food allergies. Yet, I soon learned that In Massachusetts, the guidelines for food allergies in public schools are voluntary. Our school had very little policy in place before we started there. Also, federally, the CDC has created comprehensive guidelines as well, however these are also voluntary. Even if a school does have a policy in place, it will rarely cover the specific needs of each child in a variety of school situations, since food allergies are like fingerprints; varying greatly between individuals. In order to decrease the risk of misunderstandings, accidental exposure, and unintentional exclusion, I would strongly encourage every child with life-threatening food allergies in a public school to have a 504 plan, or if you have an Individualized Education Plan (IEP), fold your accommodations into the IEP.
Okay, but does your child even qualify for a 504 plan? In 2008, The Americans with Disabilities Act of 1990 was expanded to include invisible disabilities. Since life-threatening food allergies impair two major life functions; breathing and eating, it qualifies as an invisible disability. Under section 504 of The Rehabilitation Act of 1973, children are required to receive a free and appropriate public education (FAPE) regardless of their disability or medical condition. If your child with life-threatening food allergies is at a school that receives federal funding, they should qualify for a 504 plan. This covers public schools, and in some cases, some private schools as well. https://www.foodallergy.org/education-awareness/advocacy-resources/section-504-and-written-management-plans
So why create a 504 plan? Can’t you just give the nurse an emergency action plan and be done with it? The benefits of a 504 plan vs. only an emergency action plan are that your child’s plan will focus on prevention, inclusion, and treatment. Unlike a healthcare plan, which typically only includes an emergency action plan, a 504 plan will go over procedures to prevent a reaction and keep your child safe and included throughout every school activity, which they are entitled to by law. It will follow your child from year to year, and it is enforceable through The Office of Civil Rights, if violated.
Okay, now that you’ve decided to create a 504 plan, where do you start? First, email your 504 coordinator and ask for an evaluation for a 504 plan for life-threatening food allergies; the request must be in writing. Next, visit your allergist and obtain a letter of support and an updated emergency action plan. Your school may hold one or two meetings, (one for an evaluation and another for accommodations, or one meeting to discuss both). If you have an IEP, you can fold accommodations for life-threatening food allergies into your plan, during your IEP meeting.
Prior to our first 504 meeting, I was SO anxious. I was petrified that I would either miss a crucial accommodation or ask for too much. My daughter is allergic to eggs, milk, peanuts, and tree nuts, and I knew it would be difficult to avoid all of these things in a large public school. Since our school had never created a 504 plan for food allergies before, we had to construct the plan from scratch together. Thankfully, it went reasonably well. After my experience, I compiled a list that I think every family should consider when creating a 504 accommodations for food allergies. I’ve also included some resources to help educate your school, if needed.
1. Allergen free or food free classroom. Accommodations are made to level the playing field for children with disabilities. Having an allergen in the classroom is at best a serious distraction and at worst a danger to the child. We also know from the latest research that serious reactions in the classroom occur at more than double the rate of the cafeteria (see the article cited below). Clearly, we need to manage this better in the classroom. It is important that every child can focus and learn in the classroom, without having to worry about a reaction, especially since many materials are shared between students and even residue can cause a reaction. Even small reactions can be traumatic and cause a great deal of interruption to the child’s education and mental health. Unlike “the real world” a child cannot simply leave the class when a situation is unsafe; they need to stay and learn the lesson. Keeping allergens out of the classroom is a simple way to allow your child the full ability to learn while in school. https://www.healio.com/pediatrics/allergy-asthma-immunology/news/online/%7B8ccbd4ad-baf2-487c-abfc-0690fe9acef7%7D/anaphylactic-events-in-schools-more-common-in-classrooms-than-cafeterias
2. Epinephrine must be with the child at all times. Whether your child self-carries or a staff member holds the emergency medicine, it should be with them always. Having medicine locked far away in a nurse’s office may not be helpful during a fast-moving anaphylactic reaction. We know that administering epinephrine later is associated with death. Ensure it is close by and can be used quickly at all times. https://www.annallergy.org/article/S1081-1206%2817%2930469-6/pdf
3. Ensure that all staff who care for your child are trained to administer epinephrine, including substitutes. This sounds obvious, but it is not always the case. Administering epinephrine is very simple and there is very little, if any, downside. I have had to give my child epinephrine four times myself, and I am certainly not a nurse. If I can do it, anyone can. There are on-line courses available including on FARE’s website https://www.foodallergy.org/education-awareness/community-resources/your-back-to-school-headquarters/food-allergy-trainings-and
4. Hand Washing: All children in the class should wash hands before entering the classroom and after eating. Your child should wash their hands before eating as well. We know that washing with soap and water or a water-based wipe are effective in removing food proteins, yet hand sanitizer is NOT. https://www.foodallergy.org/about-fare/blog/how-to-clean-to-remove-food-allergens
5. Take special measures around lunch and snacks. Some families prefer an allergen free table for lunch. You may prefer to supply all of your child’s food yourself. You may prefer to provide a snack list and double check the ingredients or have your child eat only approved school lunches. Whatever you decide, consider how practical and fool-proof it will be. Life is busy. Keeping things simple, can be the best solution sometimes. https://snacksafely.com/safe-snack-guide/?gclid=Cj0KCQjwn8_mBRCLARIsAKxi0GLYTHey9MQLMeZQN9x6xGeNu9YhID2Q3NG6PEKFe8RltKE88LgO3CkaAuNkEALw_wcB
6. Consider bus transportation. The bus driver or attendant should be trained to administer epinephrine while on the bus and your child should have this medicine with them to and from school every day. There should be no eating on the bus.
7. For field trips, epinephrine should go with the child always, and the child should be with the trained holder of their medicine at all times. Hand washing should extend to field trips as well. The teacher and the parent of the child with food allergies should meet prior to trips in order to discuss plans to avoid possible allergen exposure. The parent should always have the option to attend the field trip. https://www.foodallergy.org/life-with-food-allergies/managing-lifes-milestones/attending-school/field-trips
8. Food Free Classroom Celebrations. Ask that birthdays, small celebrations, and teaching activities are food free. I read this wonderful article that can be helpful in educating your school as to why this is the only truly inclusive and safe policy for food allergies. It is also a lot easier for teachers to manage; no label reading, no calling parents at the last minute to bring it an extra cupcake, fewer economic inequity issues, and less sugar in the class is good for ALL. Also, include a provision that you will meet with the teacher to discuss any larger school events where food will be present. This will ensure a clear plan to keep your child safe and included.
9. Lastly, in the event of an exposure or symptoms, the school must follow the emergency action plan (EAP) provided by your allergist. Hopefully, they will never have to do this, but having the clear plan is critical in the event of an emergency. I would go over this plan in your meeting so that all are aware of signs and symptoms and what to do. Sample: https://www.foodallergy.org/sites/default/files/migrated-files/file/emergency-care-plan.pdf
You many need to expand upon these accommodations above, however, they are at least a decent foundation to build upon. I hope this list and post will help anyone trying to understand how to establish a 504 plan or accommodations for life-threatening food allergies in school. In the majority of cases, I believe schools really want to work with you and have the same goals that families do; to keep all children safe and included. Many times, when there is any push back, it simply requires some educating. Food allergies can be scary for everyone involved; the parents, the students, the teachers, and staff. A clear plan is a great way to decrease that fear and ensure that everyone is empowered with information to handle each possible situation. Good luck, advocates! You got this!