By Anne F. Russell BSN, RN, AE-C
Mary M. Huber RN, BSN, MS spent decades specializing in School Health. She contributed pioneering work in her state by creating and implementing food allergy school accommodation plans. Mary concomitantly served on the Executive Committee for Food Anaphylaxis Education Inc.– a state nonprofit that provided seminars on food-induced anaphylaxis. She is a former board member of the Michigan Association of School Nurses and was instrumental in educating its members on needs of food allergic students. Recently retired from school nursing, Mary remains highly esteemed within her field. I am delighted she agreed to be interviewed regarding her veteran perspective on elementary school management of students with food allergy.
School Health is a distinct nursing specialty, requiring a diverse knowledge base and wide-ranging skill sets different from other specialties. What is the role of a full time school nurse in a public school system, including typical caseloads?
The role varies depending on the state and population served. The school nurse is a health resource for students, staff and parents. She may function as facilitator/consultant, give direct student care in a school clinic, make home visits, evaluate special education needs, teach staff/students and oversee health services given by others. She is a child advocate, aids in the transition of students from hospital to classroom, interprets health needs for students and contributes to creating a safe school environment. She responds appropriately to medical emergencies but also provides school management of chronic medical conditions (e.g. asthma, diabetes, epilepsy).
Preferred qualifications include a Registered Nurse license with a Bachelor or Master of Science Degree in Nursing. Experience in community health, pediatrics, family practice or related field is desired. Voluntary certification by board examination is available through the National Board for Certification of School Nurses.
Not all states have identical challenges with staffing and recognition of the major impact school nurses make on student education and safety. Regrettably, school health services by licensed health care professionals are not mandated in many states. Many districts do not provide school nurses in every building. For example, school nurses in the district I worked had 5-8 schools on their case load which translates into 3000 – 5000 students per nurse.
Given the pivotal role of school nurses in safeguarding student health/safety, parents should investigate how health services are provided in schools without nurses. In districts that do not employ nurses, what options are available to protect student health?
Many districts without school nurses depend on a building secretary, aide or even a parent volunteer to manage the health office. Other schools just make decisions based on their own personal information and judgments. Frequently, there is no licensed health care professional on-site to make ongoing complex, comprehensive health/safety decisions required for students with medical accommodations.
It can be difficult and anxiety provoking for parents to begin partnering with schools without a qualified school nurse as point person. In such districts, what steps might parents consider?
Request a meeting with the school principal. Make sure the principal has prevention and emergency plans in place before school starts. This is best accomplished months before the first day of school. Having a student with severe food allergies may be a new experience for the teacher and school. Staff education takes time. The district director of special education can also provide assistance in smoothing the child’s school entrance. Federal guidelines exist ensuring that all children have an appropriate education regardless of any disabilities. If the district does not employ qualified nurses, consider contacting the school superintendent and board of education with concerns and requests for the service.
New students with food allergies may have experienced or be at risk for life-threatening anaphylaxis. Optimally, when should parents begin contacting the school nurse to discuss accommodations?
Make personal contact with the school nurse as soon as it’s known which school the child will attend and plan a meeting. Do not wait until a week before school starts or first day of classes. Begin communication months before. Otherwise, she may not know there is a severely food allergic student in one of her schools until weeks after classes begin. Medical accommodation plans, medication coverage and staff training should all be completed beforehand. If not, student safety is at risk.
What crucial items and information do you recommend parents bring to the initial meeting with the school nurse and/or administrator?
By late spring/early summer, the child should have an annual school physical with completed related paperwork by the health care provider.
Items/information to bring to the initial meeting:
• Copies of the yearly updated food allergy/anaphylaxis emergency action plan, completed/signed school physical form, letter from the health care provider documenting the diagnosis – including need for medical accommodations, a clearly written list of medications and completed/signed school medication administration form (typically available to download off of district websites).
• Current, multiple emergency contact numbers.
• List of discussion points highlighting parent requests, questions and information for staff.
Accommodation plans and precautions are determined on a case by case basis. When you met with parents, what essential discussion points helped shape subsequent planning?
We reviewed and discussed documentation of diagnosis, specifics of severity, limits of exposure, medical recommendations for accommodations, emergency action plans and medication authorization forms. I confirmed that parents would provide the child with medical identification (e.g. Medic Alert ® bracelet) and adequate quantities of unexpired medications for the school. We reviewed each of our responsibilities in going forward. Expectations were established that the school would meet this challenge and keep their child safe.
During school tours, parents shared environmental safety concerns (e.g. need for allergen –free zones, hand washing policies). If school was in session, they visualized the cafeteria scene and selected appropriate lunch options for the coming year (e.g. cafeteria table with food allergen restrictions; potential for safe school prepared meals; sole use of home prepared food). I reminded parents to keep a supply of safe, nonperishable food available at school. It’s safest if they only eat home prepared food.
Students’ risk-reduction measures vary. Some may require 504 plans. Even with such efforts, school communities must remain attentive. What steps did you take to implement individualized accommodation plans?
By coordinating team meetings, I involved parents and all school staff/administration in the development of the accommodation plan. Custodians identified areas of danger within the building. Bus drivers brainstormed transportation safety measures. Art teachers requested and received help in evaluating safety of class materials. Cooks independently decided to remove peanut butter cookies and other peanut products from menus. Playground supervisors had good ideas. When approached from a team perspective, mutual support and subsequent plans were outstanding. There was ownership of the concern. It wasn’t a mandate from “above”.
After creating an individualized student health plan, I educated staff, including substitute teachers, about plan specifics and signs/symptoms of anaphylaxis. This included education on EpiPen® storage and access needs with training on its administration. One point I emphasized was that EpiPens® be stored in carefully marked, easily accessible locations and never be locked up.
I also created school emergency plan envelopes that contained student information necessary to hand off to EMS if an emergency occurred. I coordinated “mock” anaphylaxis emergency drills with staff. Health plans were reviewed and updated as needed throughout the academic year.
If a child required classroom and/or school zones free of the foods they were allergic to, I created signs to help enforce the request. Students were reminded not to share food. I drafted letters for teachers of affected students to send home to parents.
What are your top strategic tips for parents regarding their approach to schools that you found to be most effective?
• Don’t overestimate the understanding people have about the seriousness of anaphylaxis and the necessity of making accommodations.
• Check everything yourself. Ingredients used in food served in a cafeteria, field trips, bake sales, and class projects can all change and/or have new people involved who don’t know the situation. Re-check food labels. A previously designated ‘safe’ food may have changed ingredients.
• Tell everyone who might come in contact with your child about food allergy restrictions and anaphylaxis. Train them in the use of the EpiPen®. This includes family, neighbors, sitters.
• When it comes to “rights” vs. safety, choose safety.
• Remember: change is SLOW. It takes time.
• Make sure staff food allergy education and anaphylaxis training is in place before your child starts any program, even if it delays starting the program.
• Training school staff on food allergy and anaphylaxis is an evolving process.
• Negative comments usually originate from fear that someone will do something wrong or miss something – or fear that your child isn’t in a safe situation.
• Be a team player. Not all events will be suitable for your child. Pick and choose your battles. You may need to help adapt a school event. Don’t expect the school to do everything for you without your involvement.
• Provide documentation of updates in diagnosis, medication prescriptions and any medical restrictions in a timely manner.
• Offer to be the ‘room mother’. Act as chaperone for field trips and after school events. Be available to discuss plans for class parties and holiday celebrations.
• Remember: almost every problem is due to miscommunication and misunderstanding.
Teachers may be apprehensive about students with serious medical conditions, too. How did you handle staff members who were resistant or fearful of their responsibilities?
Fear and concern motivates most negative comments – even those from other parents. Discussions, reassurances, role playing, practice of emergency drills and distribution of concern specific information was helpful. Underlying anxiety of staff may be related to a personal tragedy or concern. Exploration of the issue in a confidential, accepting manner was useful.
Occasionally it was best not to give a particular staff member major responsibility for a food allergic student. Usually other staff behaviors influenced the decision. This is an administrative decision and does not usually involve parental input.
I would ask the staff member to put himself in a parent’s place. What must it have been like to watch your child have that first life-threatening reaction?
What must the parent have gone through repeatedly explaining this diagnosis to family, friends, neighbors and preschool staff? Bringing the topic down to a basic human element rather than something complicated, gave us a common starting place.
What do you want parents to understand about staff viewpoints?
Prepare to partner in the accommodation process. Consider that staff may be anxious about learning something new and being responsible for a frightening possibility. Think about what it’s like for a teacher with 25 – 30 students she doesn’t know when school starts. What must it be like to have so many students with individual quirks and needs? Then add serious conditions like asthma, seizures, diabetes and food allergies. Multiple health concerns requiring vigilance can cause great anxiety for teachers.
Differences of opinion regarding steps needed to achieve accommodations may arise. It may not be exactly what parents would do. If the child is still safe in school, it is advisable to look at the solution from another viewpoint. If disagreements occur, an administrator must make a decision that may be unpopular with staff or parents.
Schools are high-risk settings for accidental exposures. Could you describe when anaphylaxis did occur despite everyone’s efforts? How did you follow up on lessons learned?
I remember an incident when the culprit was hazelnut paste in a treat provided in a foreign language class. The ingredient label was in another language. The ensuing anaphylactic response required advanced life support but the student did recover. Staff response to the allergic reaction was very good but they felt tremendous guilt about the unintentional exposure. I provided reassurance and asked them to evaluate their actions and identify areas needing improvement. We refined the plan.
What are your key suggestions to parents regarding safeguards for school field trips?
Prior to the trip, collaborate with the school nurse to contact and/or visit the destination site to assess for any food allergy safety concerns. Determine whether modifications are needed. Investigate the location and accessibility of local emergency services. The responsible school staff and parents should know how to contact those emergency services and carry cell phones. Preparation creates an opportunity for the school nurse to provide refresher food allergy/anaphylaxis training to staff.
Copies of the students’ food allergy action plan and pertinent medical information should be readily available for staff trip leaders and adult chaperones. It is essential that multiple epinephrine auto-injectors (e.g. EpiPen®) be available and easily accessible in the event of delayed emergency response. Make certain the adult supervising your child is aware of food allergy restrictions and action plan directives, has adequate quantities of emergency medications and is trained to use the epinephrine autoinjector. Routinely scheduled or ‘as needed’ medications should be included (e.g. antihistamines like Benadryl®). Keep the student and their medication together. We had a teacher who carried all the medication but then assigned the student who might need them to a different group. When medication was needed there was a delay while finding the teacher. Also pack safe meals, snacks and/or beverages. A parent should attend the trip if possible, not as a group chaperone but just to look after their own child. Don’t depend on the school sending medication with the teacher. Bring your own medication supply. Occasionally, a student has to forgo a field trip. However, efforts should be made to choose destinations inclusive for all.
What circumstances caused you the most concern?
Around 8-9 years old, some children start making their own decisions about what they can and cannot eat. I had a student who removed walnuts from a classmate’s brownie and still ate it. This resulted in a trip to the ER. I had another food allergic student who ate candy from a peer’s lunch without adult approval. This did not trigger an allergic reaction because it was a previously approved candy brand. The mother was very upset because she didn’t think her child would do this. Her tears taught the child a lesson. Neither student had ever done this before. It was assumed that they knew better. In discussion with the families, we began to understand that children may not remember having an allergic reaction if it occurred at an early age. They have no frame of reference in terms of experience – only what they have been told. Some children may test or modify restrictions without consulting adults – which could be disastrous.
Food allergic students are sometimes targets of bullying and harassment by peers and staff, which is not only humiliating but may make them shy about communicating signs of anaphylaxis, delaying treatment. They may be threatened or assaulted with food allergens – potentially triggering a reaction. What interventions did you find most effective regarding bullying?
Bullying is a troubling, serious problem. Even casual comments such as “you’re the milk boy” or an adult asking “where are my peanut students” can be unintentionally hurtful. A food allergic student may be blamed by peers for not having a class pizza party because of milk allergy. An innocent gesture of handing out peanuts during a report on Georgia can cause distress for the entire class. The premise of using food in lesson plans is revisited again and again with the food allergic student often feeling the blame for this reduction in sensory opportunities.
Overt bullying is a little easier to handle with firm disciplinary guidelines reinforced by strong administration. But these are reactions to the bullying incident. Our society should focus on prevention. Classroom education on food allergies can help but may also add fuel to bullying issues as the food allergic student is again targeted by well-meaning adults. A sad but true benefit of increasing numbers of food allergic students is more group awareness and less singling out of a particular student.
You and I began work focused on accommodating food allergic students in the mid 90’s. I understand you now have a food-allergic grandchild entering school this fall. What are major improvements you have observed in these intervening years?
I am so pleased to see a general acceptance of special safety needs for food allergic students. Standards and guidelines supported by school boards, administrators and teacher organizations now exist. When we started our programs, there were no real practical policies, guidelines or educational processes in place. Information for parents was very limited. There were serious challenges and misconceptions about the diagnosis. We were breaking new ground in the area of accommodations and continually justifying the need to do so – all while focused on the goal of educating students in safe environments. There are still areas of concern. Vigilance is still the name of the game. However, there has been slow but steady improvement within most schools.
Thank you Mary! You have been an exemplary advocate for children with food allergies and now your grandchild will benefit from your exceptional professional work. We’ve both seen firsthand that ample preparation, current action plans (e.g. food allergy, asthma, eczema), individualized planning/precautions, consideration of student developmental abilities, teamwork, open dialogue, daily attentiveness, accessible emergency medications (e.g. epinephrine) and ongoing staff training regarding anaphylaxis prevention, identification and rescue – are essential to promoting food allergy safety in schools. This is a broad topic and what we’ve covered is not an exhaustive listing of all aspects related to food allergy school management. Further information is available in the listed resources.
Selected Web Resources for Parents
American Partnership for Eosinophilic Disorders: School Advocacy
Food Allergy Action Plan
Food Allergy & Anaphylaxis Network: School Guidelines
Food Allergy Initiative: Schools
Free EpiPens® For Schools Program
How To C.A.R.E.™ For Students With Food Allergies
Guidelines for the Diagnosis & Management of Food Allergy in the USA: Summary for Parents
My EpiPen® App & Resources
NSBA Policy Guide to Protecting Students with Life Threatening Food Allergies
School Guidelines for Managing Students with Food Allergies
Section 504 Plans: Office of Civil Rights, U.S. Department of Education
Classroom Food Allergy Posters
AllergicChild.com: Classroom Posters & Selected Products
Allergy Free Table: Classroom Posters
Epi Everywhere! Everyday! ™ School Based Anaphylaxis Preparedness by AANMA
Food Allergies & Schools: Keeping Students Safe & Ready to Learn
“I’m Not Nuts”: Living with Food Allergies
Managing Food Allergies by Consortium of Food Allergy Research
Managing Food Allergies in the School Setting by FAAN
Misdirections in Bullying Prevention and Response
What I Wish You Knew About My Food Allergies by Children’s Memorial Hospital
Anne F. Russell BSN, RN, AE-C has had a clinical and educational focus on food allergy for over 15 years. She served as Food Allergy Program Coordinator in a university allergy department. She was President of Food Anaphylaxis Education, Inc – a state-wide nonprofit. She’s presented on food allergy/anaphylaxis at conferences, numerous schools and initiated related state legislative efforts. As School Health Director in a preschool – 12th grade academy, she coordinated individualized health plans; trained school staff on anaphylaxis prevention, identification and rescue; and provided oversight. Anne served on the FAAN Member Advisory Council, has collaborated with FAI and is a recipient of a FAAN Make a Difference award. She is a nationally board certified asthma educator and has done graduate studies toward a Masters in Nursing. Recently she provided food allergy and asthma clinical nurse educator services in a pediatric private practice. Anne is also a Nursing faculty member at Spring Arbor University and mother of a beloved son with food allergies, asthma and atopic dermatitis.
School nurse graphic by nurse.bennettes.schools.pwcs.edu
Lunch boxes by mysweetgreens.com