Earlier this week, Jen blogged about her apprehension toward her son starting kindergarten—a whole eighteen months from now—due to his severe allergy to peanuts, which can trigger a life-threatening condition known as anaphylaxis. For the uninitiated, an anaphylactic reaction is a true emergency that requires immediate action to save a child’s life, due to its interference with breathing, circulatory and other functions. Avoiding contact with the allergen in the first place is obviously the best way to manage a life-threatening allergy, but in the case of small children with food allergies, it’s not that simple. You not only need to restrict certain foods at home and monitor what your child eats closely, but you must also be mindful of the total environment in which your child spends his day. For the most sensitive of allergies, even a trace amount of the allergen will be enough to set off a reaction. My cousin went into anaphylaxis on a childhood vacation, where the plain cheesecake served to him had been sliced with the same knife that was used for the raspberry walnut cheesecake. It’s that serious.
Needless to say, it’s understandable that anxiety can set in at the thought of sending your child off to school for the first time with a life-threatening food allergy. As Jen described, a large part of what makes this so scary is that everything is new. Since I deal with the public schools all the time and I have some experience with kids with food allergies in this context, I thought I would offer an outline of how to prepare for starting school with a food allergy.
Most of the planning activity for your child will likely take place in the spring before your child enters school, so I would begin this activity about twelve months ahead of time. Of course, if you have been dealing with food allergies since your soon-to-be kindergartener was a baby or toddler, you will have a head start since these issues won’t be brand new to you. Think of the year-long period prior to starting school as the time to research and learn as much as possible, with the last six months (spring and summer) comprising the most activity in terms of actively meeting with the school and putting your child’s medical and emergency needs into a comprehensive, dynamic plan of action that will be closely monitored and revised as needed throughout your child’s career as a student.
Connecticut is one of a number of states whose education departments have issued official guidelines for public school districts and families on the issue of life-threatening food allergies. Our state guidelines serve as a detailed yet easy to understand description of all of the applicable state and federal laws governing the care and safety of public school children with life-threatening allergies of any kind, including the storage and administration of medicine (i.e., epinephrine injectors or EpiPens), the obligations of the school districts and personnel, and the rights of students and parents. The guidelines are available online, and provide a good overview and introduction to the various types of food allergy management plans available to students and the procedures used to determine an appropriate plan for each student who needs one.
2) Research your school district’s food allergy management plan and any other policies pertaining to food allergies, student health and emergency care.
In Connecticut, each public school district is required to maintain a district-wide food allergy management plan that describes in general the district’s approach to accommodating students with food allergies. This is distinguished from the individual plans that your child’s school will develop separately and apply only to your own child’s health and day-to-day participation in all school programs and activities. In addition, the local board of education should maintain general policies concerning emergency care for students. While the general policies should not be relied upon as a sufficient to handle your child’s specific needs in an emergency, it’s a good idea to look at them and be aware of any special circumstances you may need to raise concerning your child. For example, depending on your child’s age and maturity level, she may be able to carry her own EpiPen and self-administer it in the event of an emergency. If the school district does not have an existing policy on student self-administration, this is something you will need to raise on your own (and it’s probably a good idea to do so anyway, even if there is a general policy).
Try searching online, both on the web generally and on your individual school district’s website, for these documents. I just spent a few minutes looking for Wethersfield’s food allergy management plan, since I live there, just to see what I could find. Interestingly, all I could find were three sentences on their Lunch Menus and Nutrition Services page that make a passing reference to food allergies along with a broken link. I then checked the BOE policies, and all I could find were some general procedures on medical emergencies. At this point, if I were about to send my child to school in the district, I would suggest calling the board of education offices during the school day and requesting a copy of these documents. You don’t need to be enrolled in the school district to do this; any person has the right to request a government agency’s policies and other public records.
The fact that I couldn’t find this information from my home district was bothering me, so next I did a search for the food allergy plan for Simsbury, Jen’s district. Much better—the first hit was the Simsbury Health Services page, with a clear link to both the district-level plan and a template for its students’ individual health care plans, which we’ll discuss momentarily.
3) Meet with your child’s allergist and other health care providers to discuss the upcoming school year, obtain a copy of your child’s medical records, and ensure that all prescription medications are filled and up-to-date.
In the months prior to your child starting kindergarten, you should meet with your child’s allergist to discuss her recommendations, which she should also put in writing so that you can provide them to your child’s teacher, the school principal, and others who will need this information in order to be aware of your child’s allergy and take appropriate next steps. The letter should provide school personnel with an explanation of the nature of the allergy, how it impacts your child at school or at school-sponsored activities, medication and emergency care information, and what kind of day-to-day management of his food allergy is required while at school, including any accommodations that may be needed in order for him to participate in his school day.
4) Contact your child’s school to introduce yourself to school personnel and begin the planning process.
Don’t wait until the general tour or meeting for all parents of incoming kindergarten students; make a separate appointment to introduce yourself to your child’s teacher, the principal, the school nurse, and other personnel who will be working with your child. You will also provide them with copies of the letter from your child’s allergist, so that they can arrange a meeting with you to take formal action toward planning for the management of your child’s food allergy at school.
5) Participate in a meeting to develop an Individual Health Care Plan (IHCP) for your child. If no meeting is scheduled, call the Principal’s office to follow up and request one.
Once your child’s allergist prepares the detailed letter explaining what’s needed for your child to attend school safely, that should be the trigger for the administration to take action and set up a more formal meeting to put in place an IHCP, including an Emergency Care Plan that specifically describes steps to be taken in order to administer life-saving care in the event of an allergic reaction. This meeting typically happens in the spring before your child begins school.
I think the substantive details on what to include in an IHCP could be the subject of an entire post by itself, so I won’t go into that here. The FARE website has a lot of great resources on food allergies in schools. One thing I do want to mention here, however, is that, should you walk away from the IHCP meeting feeling like something is missing or wrong, trust your gut and follow up on the issue. For example, you may encounter disagreements over your child’s health or medical needs, or feel that a component of her care is not being adequately addressed. This may involve a follow-up phone call or email with the school nurse or principal, and it may lead to another meeting. Another red flag to look out for is any suggestion from the school that your child may need to be excluded from any activities or events altogether due to the allergy, or that your child’s participation in any program, whether during the school day or as an extracurricular activity, be limited. Whenever possible to do so safely, your child should be included in all school activities and classroom instruction, to the same extent as any child without a food allergy.
In some cases, further planning will be required in order to determine whether your child is eligible for accommodations from the school as a student with a disability under Section 504, the federal law that prohibits discrimination in federally funded educational programs and activities, and requires school districts to provide a free appropriate public education (commonly referred to as FAPE) to each qualified student with a disability. More specifically, a qualified student with a disability is eligible for reasonable accommodations if they are required in order for him to participate in school activities and programs. A qualifying disability is a condition that substantially limits the child in one or more major life activities; major life activities include but are not limited to walking, seeing, hearing, eating, breathing, speaking, learning, working, and caring for oneself. For years, Section 504 was viewed primarily as a law that required accommodations for the physically or mentally disabled. “Hidden disabilities” such as food allergies have only become more commonly addressed under Section 504 in the past several years, but this trend will likely continue as the number of children diagnosed with food allergies continues to rise.
If you are in any doubt over whether your child is eligible for accommodations under Section 504, or have any unresolved questions about your child’s rights following a meeting to put together an IHCP, it’s probably best to consult with a parent advocate or attorney with experience in these issues.
6) Talk to your child about food safety and asking for help at school.
There seems to be a general consensus among food allergy advocates that when it comes to young children, it’s best not to treat them as being completely in the dark about their food allergy, even though they are quite obviously dependent on the adults in their lives for their care and are not yet able to completely advocate for themselves. As your child grows, he will gain the ability to manage his own care and seek appropriate treatment in the event of an emergency. But even at 5 or 6 years old, a child with a food allergy can learn age-appropriate safety techniques, such as remembering to ask a teacher before eating any food made available, and recognizing signs of an allergic reaction so that he can tell an adult that he needs help. Rather than worrying about scaring your child when talking about this, keep in mind that being prepared is less scary for your child than dealing with an emergency and not knowing what to do in an unfamiliar environment.
7) Continue to communicate with your child’s school frequently about her care, new developments, and opportunities for training and education.
Constant communication between home and school is an essential component of managing your child’s food allergy. In addition to keeping your child’s medical records up to date and serving as the liaison between her outside health care provider and school personnel, remember that as her parent, you are your child’s best advocate. The allergist may have the specialized training and understanding of the allergy, and the teachers and staff may have the direct knowledge of how your child’s day is structured and what activities she participates in—but you possess an understanding of your child’s unique personality, habits, and behaviors, all of which can have an impact on her food allergy management and emergency treatment. You can also offer to provide training and assistance to school personnel, students and other parents on topics pertaining to food allergy awareness and advocacy.
Your child’s IHCP, and Section 504 plan if applicable, should be reviewed and updated if needed on at least an annual basis. You can request additional meetings throughout the school year if you feel like discussion is needed on any aspect of the plan, if changes are necessary to include new or revised information, or for any purpose reasonably related to your child’s health and safety at school. Special circumstances, such as field trips, should also be raised with the team, and if not already provided for in any applicable plans, can be separately addressed as the need arises.
After writing all of this, and having just barely scratched the surface of how Section 504 and related laws may protect students with food allergies, I can definitely understand why Jen was so stressed writing her post earlier this week! However, with advance planning, armed with knowledge and a great support team, school doesn’t need to be a scary place for you and your child. Check out these links for more information and ways to connect with other parents in the food allergy community:
The Food Allergy & Anaphylaxis Network (FAAN), Managing Food Allergies in the School Setting: Guidance for Parents
The Motherhood, Navigating Food Allergies: Advocating for Your Child at School
AllergicChild.com, Food Allergy, 504 Plans, Title II and K-12 Schools [HT to Nicole Smith of AllergicChild.com, who provided us with an updated link!]