Food Allergy Accommodations in Schools Need To Change
In colonial America, people mistreated those with disabilities. The government took care of them and often admitted them to facilities that lacked reserves and oversight. They grouped them with the poor and imprisoned.
In 1990, President George H.W. Bush signed The Americans with Disabilities Act (ADA) to prohibit discrimination against people with disabilities. Under the ADA, a company with fifteen or more employees has to provide equal opportunity to those with disabilities. For example, they cannot discriminate in hiring, promotions, pay, or activities. Further, any activity that receives state, local, or federal funding must allow people with disabilities to benefit from their programs. Thirdly, public and private transportation cannot refuse service to people with disabilities. Next, any public accommodations and privately operated entities must follow disability requirements. Lastly, telephone and television services must establish accommodations for people with hearing and speech disabilities.
Allergies are a disability where one's immune system reacts to a substance. It can cause various symptoms in their cardiovascular, gastrointestinal, neurological, respiratory, and skin systems. Just breathing, injecting, or touching an allergen can cause a severe, fatal reaction. Researchers first recognized allergies in the 1800s with hay fever. They then created the first skin prick test in the 1920s to test for allergies, which was fairly inaccurate. Then, in the 1930s, allergists Guy Laroche and Charles Richet discovered food could cause anaphylactic reactions. However, most researchers did not deeply study allergies until the 1960s. The first epinephrine auto-injector, the EpiPen, was only invented about 50 years ago in the 1970s. Thus, there is still much to be discovered and understood about allergies.
Denotation
Anaphylaxis: an allergic reaction that causes the body to go into shock. Blood pressure can drop, and airways can close, which is fatal if not treated quickly and correctly.
Disability: a physical or mental impairment that limits daily activities, including food allergies
Cardiovascular System: A system of the heart, blood vessels, and blood, which transports, nutrients and oxygen to all parts of the body
Epinephrine Auto-Injector: a lifesaving medical device that helps treat severe allergic reactions called anaphylaxis
Gastrointestinal system: a system of essential organs that create digestive juices and enzymes to help the body digest food and liquids
Neurological system: a central nervous system of the brain and spinal cord that coordinates actions and transmits signals and sensory information to the whole body
Respiratory system: a system of airways, lungs, and blood vessels, that transport oxygen throughout the body and remove carbon dioxide
Skin System: a system of organs that is the outer layer, providing a barrier between the external and internal environment to protect the human or animal
Connotation
In simple terms, the Americans With a Disability Act of the 1990s (ADA) requires companies to provide reasonable accommodations for people with disabilities. However, "reasonable accommodations" are debatable, and there are ways companies work around the laws to discriminate against disabilities legally. For example, companies cannot exclude people with disabilities from applying for a job. However, they can decide not to hire someone because of their disability but blame the choice on another reason, like not having enough work experience. Further, schools must provide reasonable accommodation to those with disabilities, but they may subtly scare students into not advocating for their needs.
As someone with multiple food allergies, I have spent my whole life advocating for my needs. From being forced to wear a "do not feed" sign and eat in the bathroom away from the other kids at camp, I have experienced multiple situations of exclusion for my allergies. I had to fight tooth and nail at every school I attended to receive basic accommodations. Although the ADA is beneficial and pushes towards accepting people with allergies, much work must be done to make people with disabilities feel loved, supported, and wanted in society.
There have been elements of progress in allergy inclusion, like the School Access to Emergency Epinephrine Act that President Obama signed in 2013. It encourages states to enact laws that require schools to stock epinephrine auto-injectors by offering them federal grants. Many states have set laws requiring schools to carry the auto-injectors, while others have yet to follow suit (See figure 1).
(Figure 1)
Although stocking epinephrine auto-injectors is a significant step forward, some nurses do not have a complete understanding of when to administer the medicine. When I had a severe allergic reaction in eighth grade, the nurse was unable to recognize that I was having an allergic reaction. As a result, she refused to administer my EpiPen. In this life-threatening situation where time is of the essence, I was fortunate to survive. However, there have been many news cases where this is not the reality.
Jagger Shaw, a 14-year-old boy in Nebraska, had a severe peanut allergy. His teacher at the Liberty Middle School in Papillion gave him a granola bar containing peanuts. Shaw suffered an anaphylactic reaction. Instead of quickly administering epinephrine, the nurse gave him Benadryl and waited to see if the symptoms had subsided. The nurse's actions go against all allergy medical advice: "Epi first and Epi fast." When the reaction worsened, the nurse administered epinephrine and called the paramedics, but it was too late. They transported Shaw to the Children's Hospital & Medical Center in Omaha, where doctors put him on a ventilator. The damage was irreversible, and Jagger Shaw died on May 7, 2022. The "wrongful death" case was recently settled with the school district paying Shaw's family $1 million, but this settlement will not bring the innocent boy's life back.
Jagger Shaw's story is just one of many that occur multiple times yearly. According to the Centers for Disease Control and Prevention, "Food allergies affect an estimated 15 million persons in the United States and are responsible for approximately 30,000 emergency department visits and 150–200 deaths each year. Nearly half of fatal food allergy reactions over a 13-year period were caused by food from a restaurant or other food service establishment. (CDC)" With proper training and awareness about the severity of food allergies, the number of allergic reactions and deaths could be severely lower. Although a significant contemporary issue with the cases of allergies exponentially rising year after year, it is not a well-talked topic. One can see the stigma around disabilities through this reality.
Opposing/ Divergent Views
According to the Centers for Disease Control and Prevention, "Up to 1 in 4 (26 percent) adults in the United States have some type of disability. (CDC)" Many argue that it is too difficult to accommodate everyone's individual needs. Therefore, some businesses and schools are reluctant to hire people with disabilities. As stated previously, it is illegal to discriminate against people with disabilities. Still, companies can find ways around the law by providing other reasons why they do not choose a candidate with disabilities.
These businesses and schools argue that people with disabilities will not provide the same quality of work as someone without a disability. However, this is rarely the case. Allergies do not affect one's ability to learn or produce professional work. With suitable accommodations, people with allergies can compete with peers and succeed. Further, one could argue that people with disabilities have a heightened sense of empathy towards others, fostering great business and customer relationships.
Systems, Models, and Theories
Food allergies are a growing epidemic (See Figure 2 below). According to Food Allergy Awareness, "The number of people with food allergy in America has doubled each of the last decades. New research has revealed that more than 32 million people in the US have at least one food allergy. About 6 million American children, which is about 2 kids in every classroom, have an identified food allergy. (FARE)" This figure raises concern as there are no set and specific policies to support people with allergies in the school systems and workforce.
(Figure 2)
There are multiple ways to change the narrative around food allergies and better prepare schools and workplaces for allergic reactions. These include making epinephrine auto-injectors more affordable, stocking epinephrine in public places, educating staff and employees on how to administer auto-injectors, and creating policies that support people with allergies (see Figure 3).
(Figure 3)
Thesis
Food allergies are a growing epidemic in the United States. Currently, “32 Million Americans Have Food Allergies (FARE)" which includes "1 in 10 adults (FARE)" and "1 in 13 children (FARE)" This means one to two children per classroom have food allergies. However, schools are not equipped with safety policies that keep students physically, mentally, and emotionally. With better educational resources, safety policies, and empathetic outlooks, schools can be a safe space for people with food allergies.
Review of the Literature
A problem plus awareness equals a solution. In the United States, there is a lack of awareness and education about food allergies. Thus, schools can be an unsafe environment for people with severe food allergies. However, if the school system equipped school faculty with information, policies, and positive outlooks toward allergies, it would give students with allergies the safe school experience they deserve.
Although allergies date back to ancient China, Rome, Egypt, and Greece, scientists did not start researching allergies until the 18th century. In 1819, John Bostock, an English physician, wrote a paper about hay fever. Through the 1800s, some advancements were made in environmental allergy research. However, food allergies and treatments were unknown.
In 1905, an Austrian physician, Clemens von Pirquet, discovered a reaction in patients when he administered the second dose of the smallpox vaccine. He named this antibody-antigen interaction an “allergy.” Over the next few years, doctors studied the immune system and discovered the connection between allergies and asthma, histamine, and anaphylaxis. However, many medical practitioners noted allergies as a fad.
The latter half of the 1900s held major success for allergy research. In the 1950s, researchers discovered mast cells and how they cause allergic reactions. In 1967, researchers discovered immunoglobulin E (IgE), the antibody that causes reactions. Then, researchers created allergy blood tests to test for allergies and the EpiPen to treat anaphylactic allergic reactions. “Today, allergies are the sixth leading cause of chronic illness in the United States, costing around $18 billion a year. And so the research continues. (Heggie)” There is still much to be discovered about allergies.
Most doctors did not take allergies seriously until the 1900s. Even as great advancements in allergy research are made, the stigma around allergies can still be seen in the world today. It is difficult for humans to comprehend things that they do not personally experience. Therefore, they look to professionals for information on the subject. When highly-viewed professionals like doctors undermine the reality and severity of allergies, people without allergies are more likely to have a similar outlook. Even though the majority of doctors have reconsidered their views of allergies, the stigma is still prevalent today. How do doctors’ perspectives and biases about allergies affect the public’s view of the topic?
Arianna Varghese, a seventeen-year-old student at Half Hollow Hills High School West in Dix Hills, Long Island, suffered a severe allergic reaction at her prom. She has peanut and tree nut allergies. She went into anaphylaxis after eating a cookie containing nuts at the dance.
Varghese began throwing up, a symptom of anaphylaxis. She informed the school nurse, principal, and assistant principal that she could not breathe. Instead of quickly administering the EpiPen and calling 911, they ignored her pleas. They accused her of taking drugs, saying that she was not having a reaction. Varghese called her father. He rushed to the school and administered the EpiPen to his daughter, and called 911.
When medical professionals, like the school nurse, do not take allergies seriously, how are bystanders, like the school principal and vice principal, supposed to respond? People look up to doctors for medical advice. The first step in raising allergy awareness is informing all medical professionals about the severity of allergies. Until then, the story of Arianna Varghese is just one of the many students who are gaslighted by school faculty when having an allergic reaction.
Ammaria Johnson, a seven-year-old student at Chesterfield County elementary school, Hopkins Elementary, died of an allergic reaction during recess. Johnson went to the school nurse because of hives and shortness of breath. The death is still under investigation. She could have been saved with the use of an EpiPen. However, the school noted that they did not have the medical device in the office.
The school says they will only administer an EpiPen if the nurses are in possession of a prescription for the EpiPen for the child. They will not administer another EpiPen to the child even if they know they're experiencing anaphylaxis. Johnson's mother told reporters that her child had an allergy plan, but the school refused to keep her EpiPen on the property or give her Benadryl.
The article raises the question of whether schools should stock EpiPens. Allergic reactions can develop at any age. Therefore, some students do not know they have an allergy. If schools stock EpiPens, it could save a life. However, school staff is nervous to give medicine that is not prescribed to the child. "The bill would include liability protection for school officials who give epinephrine in good faith, Acebal said. (Moisse)"
Over recent years, there have been multiple stories of students experiencing severe and/or deadly allergic reactions at school. A policy that requires schools to stock EpiPens on campus and covers their liability of administering the medication if they act in good faith could severely decrease the number of students who die from these reactions. However, the issue is not as simple as a bill. This raises questions over who will fund the medication when EpiPens cost $650-$700 for two auto-injectors. Furthermore, safety measures should be in place to prevent the reactions in the first place.
Over recent years, many policymakers have discussed how to make EpiPens, live-saving devices for people with allergies, more affordable. There is only one company that produces EpiPens, Mylan. However, many argue nothing will drastically change unless Congress creates a cap on the price. In recent years, many generic versions of EpiPen have hit the market. Although this was predicted to bring the cost of EpiPens down, it did not. Even the generic version costs people hundreds of dollars.
There are two reasons the prices of epinephrine autoinjectors are high: government regulations on the device and medication and high deductible healthcare plans. “Last year, Congress imposed a $35 monthly cap for Medicare beneficiaries and mandated steep discounts for Medicaid. In response, and with the looming threat of more ambitious action by states, all three of the major US insulin manufacturers have slashed prices for some of their products in the past month. (Scott)” Policymakers are hoping the trend will influence epinephrine autoinjectors.
Many states, including Colorado and Rhode Island, are currently trying to pass yearly Epinephrine auto-injector price caps. However, these state regulations would not help people who are covered by self-insured employer plans.
The price of EpiPens is inelastic. Meaning if the price rises, it will not affect the buying habits of consumers. Without epinephrine, someone experiencing anaphylaxis can die within fifteen minutes. Definitely, many do not realize they are experiencing anaphylaxis until their airways start to close, minutes into anaphylactic shock. Therefore, in many cases, people experiencing anaphylaxis cannot wait to dose epinephrine until paramedics arrive.
EpiPens are not covered by all insurance. In many cases, insurance covers only a portion of the several hundred dollar medication that expires every year. Life-saving devices should be affordable to all. If the price of EpiPens is lower, it makes it easier for schools to stock EpiPens for students. However, the price of EpiPens is only one component of making schools a safer space for students with allergies. What else needs to be in place to keep students with allergies safe?
Allergy policies vary by school and state. Each state has its own guidelines, laws, and regulations around the plans. One of the best strategies for dealing with students with allergies is reviewing the current best allergy practices. Additionally, staff need allergy training on how to prevent, recognize, and treat a reaction. See Figure 4 for an example of information that is beneficial for school staff to know.
(Figure 4)
There are many symptoms of anaphylaxis that can affect multiple systems of the body. Many cases of anaphylaxis do not look the same. Often, people do not recognize anaphylaxis until it affects breathing, limiting the chances of survival. All school staff must learn the signs of anaphylaxis, as the school nurse may not be present when a student is experiencing anaphylaxis. Unfortunately, in many cases, schools do not worry about educating their staff about food allergies until after a tragedy occurs. How do parents feel that schools are educating staff and supporting their children with allergies?
BMC Pediatrics conducted a study to gather the parents of kids with allergies' perspectives on food allergy policies at school. Many schools have allergy policies. However, “Of the 289 parent respondents, 27.4% were unsure or felt school was unsafe for their child with food allergy. (Shahzad et al.)” There are also many concerns of parents with food allergies. Many who think the policy is helpful still believe that there needs to be policy improvement. “While the majority felt that the policies in their child’s school were helpful, most also believed that implementation of additional policies was necessary, including availability of stock epinephrine (94.2%), lunch menus with allergen information (86%), ingredient labels on food items (81%), and direct food allergy education for students (86%). (Shahzad et al.)” These policies will help parents feel safer with sending their children to school.
The study voices many concerns of parents with food allergies: the need for allergy policies in school and the updating of said policies. If schools could stock epinephrine and have it readily available for use, it would help prevent mortality. Many current school policies lock epinephrine in the nurse's office. With anaphylaxis, time is of the essence. It may take staff too long to go to the nurses’ office, unlock the medicine, go back to the student, and administer the medicine.
Further, ingredient labeling is essential to ensure student safety. It would help prevent reactions. Also, many people who do not have allergies know little about the condition. Schoolwide education about food allergies is essential and beneficial. However, these physical accommodations only solve a portion of the struggle of students with allergies. Food allergies can affect one physically, mentally, and emotionally. How can schools mentally and emotionally support students with allergies?
“More than 1 of 3 people with food allergies report being the victims of bullying, teasing, or harassment because of their food allergy. (CDC)'' There are multiple ways schools can mentally and emotionally support students with allergies. Schools should work with parents and students to create a plan that allows the student to participate in activities safely instead of being excluded. Further, the school can work toward making the campus a safe space for all students, not tolerating bullying. Students should also have access to mental health professionals.
Mental and emotional accommodations are just as important as physical accommodations for allergies. Education is an essential component of one’s success. However, to learn properly, one must feel safe. Unfortunately, many students with allergies feel excluded because of their medical condition. Schools should work to make every student feel safe. Not only are mental health resources necessary, but the professional must be allergy-informed. How do schools inform students about allergies without ostracizing those with food allergies?
There are six ways schools can prevent bullying:
“Teach kindness and empathy (Lesley University)”
“Create opportunities for connection (Lesley University)”
“Identify ‘gateway behaviors (Lesley University)”
“Use the arts to create context (Lesley University)”
“Minimize ‘concentric circles’ in schools (Lesley University)”
“Participate in simulations (Lesley University)”
Empathy is the ability to understand another’s perspective deeply. It is essential to teach young students about empathy to help them accept students that are different from them. Empath also helps with conflict resolution. It helps create a supportive community.
If students and school staff adopt an empathetic outlook, it would create a safer space for those with allergies. Not only will an empathetic outlook help students feel safer, but it will physically keep them safe too. There have been multiple accounts where people throw allergens at a person, causing a reaction. Empathy will help someone understand the severity of a reaction and how they should treat their peers with kindness. How does an empathetic outlook support allergy accommodations?
In conclusion, if schools had better educational resources, safety policies, and empathetic outlooks, students with allergies would be safer. The issue of accommodating food allergies is a complex subject. It involves school administration, policymakers, and state and federal lawmakers. If more people had an empathetic outlook around allergies, it would help create the much-needed change in the education system. No more students should lose their lives before significant changes are made to accommodate food allergies.
Research Design
Allergy accommodations in schools are a significant issue with the rising number of children with food allergies. There are three pillars to allergy inclusion: educational resources, safety policies, and empathetic outlooks. Many school administrators need help with current protocols. Allergy life is challenging. One cannot truly understand the challenge unless they live the reality. However, the right educational resources can foster an empathetic outlook. There needs to be more awareness about the accommodations people with allergies need to feel safe and supported.
A great way to educate oneself on a reality they do not experience is by studying others' perspectives. I researched the personal perspectives of people living with allergies or caring for children with allergies to see their points of view. I asked questions like “Is your school educated about allergies,” “What is your experience with allergy accommodations in schools,” and “How have allergy accommodations affected your mental and emotional health?” I used data collection strategies such as blog posts, interviews, and surveys.
Qualitative Data
Corinna Meckelborg is a Food Allergy Coach at Friendly Pantry Consulting Inc. She has over 16 years of research & experience in caring for a child with food allergies. She shares her experiences, resources, and support through online blog posts.
Meckelborg’s daughter started preschool in 2011, just the beginning of her journey of fighting for allergy inclusion in schools. Meckelborg felt safe with the preschool as they had a peanut and nut awareness policy; it gave her comfort thinking the school was allergy aware.
However, she quickly realized that was not the case, as many schools do not oversee that the policy is upheld. In addition, faculty members are not educated on the severity of allergies. “I know that as much as the school tries to keep nuts out, there are always nuts there. From PB & J sandwiches to Nutella snacks, my kids have seen them around at recess and in the cafeteria (Meckelborg).” Schools lack good allergy safety policies and education.
Schools have many issues to attend to. Although food allergies are severe, many school faculty members are not fully educated on the subject. Therefore, they do not prioritize creating strong safety policies. Through Meckelborg’s experiences, one can see how many current allergy policies do not fully support those with allergies, and there needs to be change to prevent severe allergic reactions on campuses.
I interviewed Dr. Diana Coseglia-Danna, a holistic nurse practitioner and mother to two children with food allergies. She shared her accounts of fighting for allergy accommodations for her children, especially her youngest daughter, Sarah, who has an airborne peanut allergy.
Dr. Coseglia-Danna shared that schools lack strong allergy accommodations. As a result, she has spent hours year after year in ADA Disability Accommodation Officers’ offices fighting for basic accommodations. For example, Sarah attended a high school with a cafeteria without windows or good ventilation. Therefore, it was unsafe for her to eat there. Thus, the school offered an option to eat in the nurse's office with the children with eating disorders who had to be watched during lunch.
Dr. Coseglia-Danna disagreed with the accommodation “Disability accommodations are supposed to help people feel supported and included. This accommodation did the opposite. (Dr. Coseglia-Danna)” Students with eating disorders had to eat all their lunch within a 30-minute window, which was very challenging with the condition. It often causes uproars among the students. Dr. Coseglia-Danna did not want her daughter exposed to this situation. She thought it would be mentally taxing. Further, “This accommodation would have brought unwanted attention to Sarah’s disability instead of being inclusive. (Dr. Coseglia-Danna)”
After much debate, the school offered another accommodation. Sarah would have no lunch period but be able to eat snacks in class. Although Dr. Coseglia Danna would have preferred a safe cafeteria experience for her child, she felt like this accommodation was the best they could get.
The interview with Dr. Coseglia Danna demonstrates that allergy accommodations do not always help. School staff are not educated on supporting people with allergies. Thus, many accommodations do not fully support people with allergies. That’s how schools wind up grouping allergy kids with students with eating disorders or taking away students' lunch periods. These impractical accommodations are emotionally draining for people to deal with. Thus, it creates advocacy fatigue.
People with allergies and parents of children with allergies constantly fight for their needs. It is tiring. It often feels easier to give up and skip events. Schools need better educational resources, safety policies, and empathetic outlooks because people should not have to fight for safety and inclusion.
Quantitative Data
The Asthma and Allergy - Foundation of America (AAFA) surveyed people with allergies and parents of children with allergies. The surveys covered various questions about how allergies affect their lives. For example, the survey found that 53% of people surveyed “skipped out on an important school function (AAFA).”
Further, many people shared how allergies are a huge emotional burden. One respondee said, “Everything must be preplanned, and accommodations ensured. It just feels like more stress than other parents have to face in regard to their child’s safety and nutrition.” (AAFA)” Another person said, ‘“Sometimes the fear is overwhelming. It is a monumental task of trying to navigate this life with so many restrictions. I have to teach my toddler that food that is healthy for most people is dangerous for him. I am finding it more difficult to hide my fear from him and to help him live his ‘normal’ life. (AAFA)” This survey highlights the physical, mental, and emotional tolls of allergies.
People with allergies should not have to fight for accommodations that ensure safety. Challenging administration year after year is physically, mentally, and emotionally taxing. One can see people's fatigue from the never-ending accommodation battle through their accounts. Many reach a point where not attending events instead of fighting for accommodations seems easier. Students should not have to miss out on special occasions to ensure their safety. Change needs to happen in schools so everyone feels safe and included.
Kids With Food Allergies (KFA), an online community for people living with allergies, surveyed the social and emotional impact of allergies. Because many schools lack good allergy safety procedures, many people with allergies feel safer missing events. The survey reported, “92% say they always or occasionally feel fearful for their child’s safety because of food allergies. (KFA)”
The KFA survey touches on very important elements of living with food allergies. Parents are tired of fighting for their children’s safety. They fear for their children’s lives. Missing out on events seems easier. It is how they have coped with bad school accommodations for years. This raises an important question: how will schools make students with allergies feel safe after years of bad accommodations? Not only do schools need to create accommodations that keep students with allergies safe, but they also need to regain the trust of parents and students.
The best approach to good allergy accommodations is listening to those affected. Seek to understand them. Too often, school accommodations are made to benefit the school instead of the student. Schools must be open to being wrong and change how they have handled allergy accommodations for years.
Personal Perspective and Conclusion
In conclusion, allergy inclusion in schools needs to be addressed. Many current policies do not keep students with allergies physically, mentally, or emotionally safe. If schools had allergies policies that account for the many things that people with allergies need, schools would be a safer space. For these policies to be made, better allergy education must be provided. This would also foster an empathetic outlook around allergies.
As someone with multiple food allergies, allergy accommodations severely affected my mental and emotional health. For example, when I was five, my camp made me wear a “do not feed” sign pinned to my shirt like an animal. I was also forced to eat lunch in the bathroom, separated from the other kids. This was just the beginning of feeling like I never fit in.
When school accommodations are not made with an empathetic outlook, they can affect one's mental health. For example, I often felt that schools spent more time creating accommodations that prevented legal action instead of supporting my physical, mental, and emotional needs.
For example, I cannot be around people eating peanuts or peanut products. Therefore, all classes are peanut free. My first ADA accommodations officer in college did not keep my privacy confidential from professors. Thus, a professor introduced me to the class as the girl with the peanut allergy. Consequently, I was bullied by my peers because of my allergies. Instead, they should have explained that someone in the class is allergic to peanuts so that no peanuts can be consumed. My identity did not have to be revealed. My school cared more about creating allergy policies, so they were not liable than creating policies that helped me.
Further, my college has a school-wide policy that no food or drinks besides water will be consumed in the classroom. Although this policy has nothing to do with my accommodations, many professors used my disability as an excuse for the procedure. It pinned peers against me from the start of school. If school staff were educated about allergies, they would have an empathetic outlook, and situations like these would be less likely to occur.
The best way to create reasonable allergy accommodations is by listening to those with allergies. Thus, interviews and surveys are a great way to gauge opinions and needs. Even as someone with multiple food allergies, I plan to continue seeking to understand others with allergies. I have room to become more empathetic to others who live different allergy lifestyles. Therefore, school faculty that do not have personal experience with allergies have a lot to learn too. This informed and empathetic outlook will help create stronger policies and keep students with allergies safe in school.
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