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Food Allergy Advocacy in Schools

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Sending your child off to school is worrisome enough as a parent—but when your child has a food allergy, that anxiety amplifies. 

My daughter is highly allergic to peanuts—off the charts allergic. Three years ago, when she was in kindergarten, I frequently received calls from her school that she had experienced a topical allergic reaction. Given the severity of her allergy, and the fact that they sold PB&Js in the cafeteria, this didn’t come as a surprise.

Her school had archaic food allergy protocols and procedures in place, and didn’t seem to grasp the severity of the situation. Their cafeteria was effectively a minefield for my daughter!

You should know: I'm not the kind of person that accepts the things I can't change. I change the things I can't accept. And I couldn’t accept living in constant fear for my daughter’s life.  

Fast forward three years, and her school district now has a food allergy awareness program in place and is making considerable strides to keep children with food allergies safe. 

How did this come to be? A few things happened. 

First, I engaged the school nurse. When I initially relayed my concerns, her response was, "We have food allergy guidelines in place." Now, let’s be clear, these guidelines weren’t routinely followed or required—they were recommendations. I felt for her, because she truly didn’t seem to grasp the seriousness of the situation; in her defense, she grew up in a time when food allergies weren’t an epidemic. 

It was then I realized what was missing—a true understanding of what was going on. People don’t know what they don’t know! 

In my heart I know that no parent, teacher, or school nurse would ever do anything to intentionally harm my child, yet there seemed to be a serious lack of awareness around the severity of her food allergies. 

My first goal was to make sure the district removed PB&J sandwiches and nut products from school cafeterias. After that, I focused on promoting education and awareness within the schools, and with children and their families. We needed to foster an environment of inclusivity, which I felt was sorely lacking. 

I’ve learned that adults find change difficult, but children usually embrace it!

Change is usually most successful with smart, slow, and strategic execution. We published a series of educational articles in weekly school newsletters and integrated food allergy awareness and education into school events (e.g., PTA meetings, school assemblies, book fairs, harvest days, etc.). We also organized book readings and games to coincide with national Food Allergy Awareness Week

The children embraced learning how to keep their allergic classmates and friends safe, and in turn, educated their parents by sharing what they learned in school. Coming home from school with a sticker that said, "I kept Sophia safe today,” prompted their parents to ask about the meaning of the sticker, and often began a conversation about food allergies. If mom or dad was making a PB&J sandwich for lunch the next day, their children might say, "Don’t make me that! It’s not safe for my friend!"

There are eleven elementary schools within our school district. We piloted this program at one school, then another, and another, and soon our awareness and education program was implemented throughout the entire district! In the meantime, we collaborated with the district administration to update and rewrite the food allergy protocols and procedures, and built food allergy education into lesson plans. We also created a district-wide food allergy informational brochure for incoming and existing families within our schools. 

Our efforts weren’t met without resistance, and these achievements took time and patience. I’ve learned that to work collaboratively and effectively with schools and other parents, it’s important to be clear and explain the WHY. Why are we removing peanut butter from schools? Why is my daughter unable to bring in cupcakes for her birthday? From experience, once someone understands the WHY, they often embrace the change. In turn, they often become a food allergy advocate themselves! 

- Abbe Large 

 

Abbe Large is a Senior Vice President at Lenox Advisors. She has held leadership positions within her school district’s PTA and currently sits on her town’s education committee. Abbe is a minority investor in Allergy Amulet.

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The 411 on the 504: School Allergy Plans Decoded

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Last month we covered the basics of kids and epinephrine. This month we’re bringing you the skinny on school management plans for your child’s food allergies.

Are you wondering about a 504? An IEP? Have we lost you? 

Don’t worry, we’ve got you covered. 

Setting Up the Plan

Most school districts have district-wide plans for food allergy management, treatment, and reaction prevention. Many states also offer suggestions for school districts on managing food allergies based on guidelines from the Centers for Disease Control and Prevention. To date, there is no federal regulation that standardizes these policies and procedures, so these policies vary between states (and often between school districts within each state). 

The first step in setting up an allergy management plan for your child is to reach out to your child’s school. Many schools will ask you and your child’s doctor to fill out an allergy and anaphylaxis emergency plan form, although this form can go by different names. This form covers what steps school staff should take in case the child is exposed to an allergen or if he/she exhibits symptoms of a reaction. The American Academy of Pediatrics published this template form for reference. Once submitted, the school nurse typically prepares an Individualized Healthcare Plan (IHP): an internal document that outlines the processes the school should follow in the event the child experiences an allergic reaction. 

Some parents go one step further and request a 504 plan. Section 504 is part of a federal civil rights law that protects individuals with disabilities and health conditions, including life-threatening food allergies. The law applies to all schools and programs that receive financial assistance from the U.S. Department of Education (so all public schools and some private schools). A 504 plan lays out how the school should prevent and respond to allergic events. If a 504 plan protocol is not followed, there are several dispute resolution options available for parents. 

To secure a 504 plan, a parent must contact the school district’s 504 coordinator, who works with school officials to determine if the child qualifies. This determination is based in part on medical history, so your doctor may need to provide the school with this information. If the child qualifies, the team will work together to determine what special accommodations and protocols must be followed. 

Notably, if your child has a disability and qualifies for an Individualized Education Plan (IEP), a separate 504 plan is not necessary. The child’s food allergy accommodations may be joined under their IEP. Also of note, in some non-religious private schools where 504 plans do not apply, parents may rely on the Americans with Disabilities Act (ADA) to ensure that the school implements a food allergy management plan for the child. 

School Policy Options

Since there are no national standards for food allergy protocols, policies vary widely between schools. 

According to a recent study surveying school nurses across the country, the most frequently reported policies include: training school staff to respond to allergic reactions and anaphylaxis, using epinephrine autoinjectors, and managing for cross-contact in cafeterias. Other policies commonly implemented include: community food allergy awareness events, designated lunch areas for children with food allergies, and food guidelines for classroom celebrations.

The least frequently reported policies were: allergen labeling information in cafeterias, food management policies for after-school activities, and school-provided stock epinephrine for field trips and off-campus outings. In light of the differences between school policies, parents should understand their school’s protocols before developing their child’s plan.

Words of Wisdom

Finally, we talked with a few food allergy parents in different school districts and asked them to share a few words of wisdom on these management plans:

- “Plans may be different within the same school system—as your child goes from elementary to middle to high school, you will want to revisit your plan. For example, once a child moves to a different school building, new protocols may be appropriate. Older children may also be allowed to self-carry epinephrine or antihistamines.”

- “Make sure your plan or school policies cover transportation to and from school if your child rides the school bus.”

- “Think about after-school plans for your older child, as middle and high school students often have plans with friends after school. For example: can they store their medicine in a school locker during the day–even if the school doesn’t allow self-carry–so that they are prepared to go to a friend’s house or activity directly after?”

We hope this rundown of plan options, food allergy management policies, and parenting wisdom helps you to better advocate for your child’s food allergy needs!

-      Susannah and the Allergy Amulet Team 

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