We’ve all heard the expression “a mother’s work is never done,” and as the mother of three young kids, I couldn’t agree more. But what rings even truer for me is “there’s never a day off for a food allergy mom.” My work as mom to 10-year-old Nina – the oldest of my three kids and the only one with a food allergy – is never “done” in a way that it is for my younger two, Daniella, age 8, and Mateo, age 3.
For Daniella and Mateo, a playdate is just a playdate. A field trip is a field trip. A summer camp is an exciting new opportunity: a time to make friends, spend time outdoors and learn new skills.
For Nina, it’s a potential minefield. How do I make sure she has safe foods to eat? Who will step in if something goes wrong? Who will know where her epinephrine is? Who can I trust to not hesitate to use it? Most importantly: what do I do to make sure I get her back home safe and sound?
Troubling Epinephrine Policies
Summer camps make me more nervous than school, field trips, play dates and other activities because, in my experience, the counselors are often very young and the days are not always very structured. At summer camp, there’s more movement from one activity to another, less routine, less experienced supervision – it all leaves room for error.
Most troubling of all is an emerging trend I’ve noticed in the last couple of years that I hadn’t encountered in my previous six years working on food allergy safety: the reluctance of some summer camps to administer an epinephrine auto-injector, the only life-saving medication available to our kids with food allergies.
Known as the “guiding hand policy”, many food allergy families have encountered summer camp programs that have adopted a practice whereby their employees are told not to administer epinephrine directly to a child in need and instead to make the child hold the auto-injector, so that he or she is technically self-administering the medication. At most, employees are instructed to “guide the hand” of the child experiencing anaphylaxis.
Changing Summer Camps
Many food allergy families feel this refusal to administer life-saving medication is tantamount to barring kids with food allergies from enrolling in a camp. I think they’re right. The first time I heard about a camp doing this, I didn’t believe it. Surely there was some misunderstanding. A camp can’t legally do this, can they?
In my view, the answer is a resounding “no.” Title III of the Americans with Disabilities Act (ADA) protects all individuals from being discriminated against because of their disability in “places of public accommodations,” which camps are. And while in everyday language we may not think of kids with food allergies as “disabled”, they are when it comes to this law.
A well-known settlement agreement between the Department of Justice and La Petite Academy*, a nationwide child-care provider, sheds light on this situation. In that case, La Petite had been refusing to administer epinephrine auto-injectors to the young kids in its care with food allergies. The settlement agreement under the ADA required La Petite to implement a policy that staff would administer an epinephrine auto-injector if treating a child with a severe allergic reaction.
If camp administrators told me they would only help Nina “self-administer” her epinephrine in an emergency, I would not stand for it. I would hope that educating the director and senior staff on best practices for food allergy management would lead to a change. If it didn’t, I would send a written complaint to the Department of Justice’s Disability Rights Section (instructions for filing a complaint can be found on the ADA website). Bottom line: I would not feel my daughter was safe attending a camp with such a policy.
In schools, daycares, and summer camps, our kids need to know that in an emergency the adults caring for them will not hesitate to give them the medicine they may need in order to survive. FAAN is here to help with the education all teachers, counselors and caregivers need in order to confidently care for kids with food allergies. If you know of an organization that could benefit from our expertise, ask them to check out our free online course at www.allergyready.com or to visit our main website. It may just help save a life.
Maria Acebal is the former CEO of FAAN (now FARE) an organization dedicated to serving families with food allergies.
*See the agreement at www.ada.gov/lapetite.htm