Helping Families Manage Food Allergy in Schools

Tips and Tools for the Allergist and Nonallergist

Matthew J. Greenhawt, MD, MBA

Disclosures

July 25, 2011

In This Article

Special Circumstances in Advising Families With Food-Allergic Members

Although there are many potential examples, the following 3 issues merit special attention.

What Risks Do Teenagers and Young Adults Face in Managing Their Food Allergy?

Older children with food allergy, specifically teenagers and young adults, face somewhat different issues. Fear of exposure from craft projects or poor hand hygiene are generally not issues at this age. Most of these children are old enough to ask about potential contamination or communicate that they have a food allergy, although they do not always do so. Limited study of this age group has highlighted that, unfortunately, risk-taking behavior is common.[15,16,17]

Published registry studies have documented that the vast majority of fatal food reactions occurs in this population of food-allergic individuals, including on college campuses.[17,18] This finding is disconcerting. Intentional risk-taking in college students is manifested in a variety of ways, including the following:

  • Not maintaining emergency medication to treat a potential reaction (including self-injectable epinephrine);

  • Poor notification of close friends and contacts (including health services and dining services) of a food allergy; and

  • An increased willingness among those who have never had an anaphylactic or severe reaction previously to intentionally ingest a known allergen.[17]

Identified fatalities from a 2-part study of a longitudinal registry showed a clear association with people who either did not have their epinephrine device or receipt of the drug was delayed.[15,16] Limited focused study of food-allergic teenagers has revealed that peer pressure, a need to “fit in” with the other kids, and bullying were all associated with risk-taking.[18,19]

What About Reports of Bullying of Children With Food Allergies?

Bullying students with food allergy occurs and can take both verbal and physical forms.[19] Survey studies and observations commonly note teasing, taunting, and harassing children who are food-allergic. In March 2011, the story of a 6-year-old peanut-allergic girl in Edgewater, Florida, was a prime example of bullying at the community level.[20] Based on news reports, unaffected students were subjected to draconian measures and there was a community-wide protest of the food-allergic child's right to attend public school.[20]

A recent study of 353 teenagers found that 24% reported being subjected to some form of bullying and that 80% experienced multiple episodes.[19] The vast majority of teens in this report considered the bullying to be directly related to their food allergy, and some reported that they were intentionally exposed to their allergen. Emotional consequences of bullying, including depression, sadness, and embarrassment or humiliation, were reported by 67 of the children in this study.[19]

These are rather serious findings, and bullying and similar behaviors in schools are probably underreported. No child should feel unsafe in their learning environment or feel persecuted or singled out because of a medical condition. When caring for food-allergic patients, it is critical to ask about bullying and emotional well-being as part of routine office visits.

What Protections Does the Americans with Disabilities Act Afford a Food-Allergic Child?

The following 3 laws are often referenced when protection for a food-allergic child is being discussed:

All 3 laws delineate rights for disabled individuals -- the most applicable to the right to educational accommodations for food-allergic children attending facilities receiving public funding is section 504 of the Rehabilitation Act. This section affords children with disability equal rights to services at school and stipulates that "no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under any program or activity that either receives federal financial assistance or is conducted by any executive agency or the United States Postal Service." To be afforded these services, the individual must be considered disabled as defined by specific criteria under the ADA. The ADA applies to most schools regardless of funding sources (eg, public and private schools). Food allergy is not covered by the IDEA unless the child has another need for special education. Schools do not have to provide Individualized Educational Plans as they would under the IDEA. Individualized Educational Plans are often confused with Individualized Health Plans (IHPs), which do result from enforcement of the Rehabilitation Act. The alphabet soup of regulatory acts can be quite intimidating.[21,22]

Let's clarify this a bit more. A typical situation occurs when parents wish for formalized accommodations for their food-allergic child at a public school or private school receiving some public funding. Their options are to try to work out some accommodation with the school, obtain an IHP from their healthcare provider, or obtain a section 504 plan. The IHP is formulated in conjunction with the school nurse, parent, and healthcare provider. It serves as a guide for how to protect the child in the school setting, typically outlining risk-reduction strategies and medication use, as described in the previous section. Many providers choose to write form letters that serve as informal IHPs, but formal versions exist. An official section 504 plan is similar to an IHP, except that the 504 plan is written on an official document and comes with the right to legal representation and “due process” to enforce the rights laid out in the plan.

To obtain a plan, the child must be formally evaluated under section 504 to determine whether he or she meets the ADA definition of a disability, which is defined as a "physical or mental impairment which substantially limits one or more major life activities." “Major life activity" includes "walking, seeing, hearing, speaking, breathing, learning and working" as well as "eating". Thus, a food allergy could be a covered condition, but determination of disability is subject to a formal evaluation by the school district. Districts are required by law to have a designated 504 Coordinator to ensure that the provisions are enforced. However, it is imperative to understand that the legal system has not always upheld the view that a food allergy (even a severe allergy) is a disability. In fact, 11 appellate-level cases have upheld a ruling that a food allergy was not considered a disability.[22] Therefore, it is very important to document the nature and extent of the child's food allergy so this information is available when the case is reviewed. Unfortunately, there is a common misperception that children with food allergy automatically qualify as having a disability. The passage of the Americans with Disabilities Act Amendments Act of 2008 extended the reach of the ADA with the intent to lower the threshold to qualify as having a disability due to food allergy.[22]

Children who are granted a 504 plan are then afforded the right to a “free and appropriate education” by the school district (this includes all public schools and any private school receiving federal funding) equal to that provided to nondisabled students, although if the efforts to provide this education are believed to cause an “undue burden,” the school district does not have to provide that level of services. This stipulation is complex, however, and a thorough discussion is beyond the scope of this article. Many clinicians, while amenable to helping families obtain a 504 plan, may choose to deal with the school or child care center on a less formal basis and only resort to a formal plan if special circumstances arise, such inability or unwillingness to enforce accommodations. However, it is important to have a written, documented plan -- regardless of the type -- and to engage the parents of the child to learn the specifics of their situation and help them decide if a formalized 504 plan is needed. The Food Allergy & Anaphylaxis Network provider a downloadable parent guide for kids with food allergies that explains these varying protections

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