Before I began my graduate studies, I had no idea just how important the ADA Amendments Act of 2008 was...and not just for food allergies!
In 2008, I was newly married, not a parent, completing my second year of teaching, no real knowledge of food allergies, and living in Texas (we've lived in three other states since then...I measure my time in the last decade by where we were living...). My knowledge of ADA was limited to what I needed to know to teach...which was embarrassingly scant.
Fast forward 9 years. Three states. Two kids. One Masters degree (almost!)...and a whole LOT of knowledge about food allergies later...here we are!
It has been an interesting semester. I am wrapping up two classes this semester: an independent study (that I have had the incredible fortune of doing with the professor that has made the biggest impact on my life since moving to TN), and a legal issues course (interestingly enough with that same professor). So while I never intended for the focus of my independent study to revolve around legal issues, I almost couldn't help myself in light of the fact that I am taking this other course simultaneously.
So when I stumbled upon the ADA Amendments Act of 2008 (ADAAA), I was amazed! This thing is a big deal! The ADAAA expanded the definition of “disability” AND rejected the holding in two Supreme Court decisions that narrowed the definition of “disability” and related terms. It also also rejected further decisions by lower courts, which “incorrectly found … that people with a range of substantially limiting impairments are not people with disabilities.”
The ADAAA also took away the statute that if a disability could be treated with medication (like food allergies with epinephrine), or was episodic, it was not a disability.
As a food allergy mom of a four year old, I have taken for granted that I know for a fact that his life threatening food allergies are covered by the ADA. I did not know that it is only due to the ADAAA nine years ago. In fact, according to Shackelford, some colleges would "specifically exclude “allergies” from disability policies and guidelines and indicate that allergies are not considered a “disability” under the Americans with Disabilities Act or the Rehabilitation Act." Shackelford went on to say that "institutions whose disability policies contain exclusions for allergies are backed by a number of federal court decisions, holding that various types of allergies are not covered by the ADA. Federal courts have routinely rejected ADA disability claims based on food allergies, such as to peanuts and peanut products, and allergies to latex, dust mites, animals, perfumes and fragrances" (2009).
There is still work to be done to make college and university campuses accessible to students with food allergies, and some are doing great work (I've tried to highlight some via social media this month!). And while there is still work to be done, I am also very confident that the world today in 2017 for our food allergy children/young adults is a better place than it was 10 years ago. And that, my friends, is a very good thing.
Shackelford, A. L. (2009). Food allergies may, may not be a ‘disability’ under the ADA, Rehab Act. Disability Compliance for Higher Education 14(7), 3.
One of the other individuals I have had the pleasure of interviewing for this project is Mr. Joel Schaefer. Mr. Schaefer also served as a co-chair on the committee that wrote the Pilot Guidelines for Managing Food Allergies in Higher Education with FARE. I am grateful to Mr. Schaefer for giving his time to answer a few questions for this project. He was simply wonderful to be in contact with and is passionate about the cause of making colleges safer for students with food allergies - thank you Mr. Schaefer!
Mr. Schaefer has spent much of his career dedicated to learning about food allergies and other dietary restrictions and works to educate others regarding what he has learned. Mr. Schaefer, along with his wife Mary, works as a consult with FARE, writes magazine articles for Allergic Living Magazine, and continues to develop new recipes for those with special diets. As he put it, "Since we both have specific food sensitivities and need to watch what we eat, it is only logical we create the ultimate recipes that everyone in the family will enjoy." He also wrote a book entitled "Serving People with Food Allergies, Kitchen Management and Menu Creation."
I asked Mr. Schaefer what led him to serve on the committee to develop the FARE Collegiate Pilot Guidelines, and he cited a few reasons, including his previous work as a consultant with FARE, his work with FARE on the creation of the National Restaurant Association Allergen Training Program, and due to the fact that, at the time the Guidelines were developed, he was the executive chef at Concordia University. This experience made Mr. Schaefer a perfect fit to serve on the committee. Schaefer says, "I had first-hand knowledge of the challenges that faced both students and the food service operations"
I continued with a question about what he believed were the biggest issues and challenges facing college campuses as they seek to manage food allergies. His response highlights the fact that food allergies are truly an emerging issue on higher education campuses, and that the numbers of students with dietary needs is contiually rising. Schaefer responded, "There is a continued rise in students with food allergies and special diets, so managing these special requests while serving hundreds and in some cases thousands of other students at the same time can be hard. While at Concordia University, the number of students with special diets rose from 5 to 25 in one year. That doesn’t seem like much, but in a small kitchen with minimal staff, it is a challenge to make food safely in a timely manner for them." Schaefer also mentioned the constantly changing schedule of the typical college student, and that it is difficult for the kitchen to be ready for students upon arrival when they do not communicate these changes. Food allergy management is truly a team effort, and the student must be a member of that team and assist the individuals trying to help them.
Schaefer laid out a four-step process that be feels dining services need to take to ensure the safety of students with food allergies:
a. First, there needs to be communication with school departments that have the
information about these students, so nothing is missed.
b. Designate specific staff members to handle the process.
c. Get the proper training and continue the training annually.
d. Create special menus that meet multiple food allergies and create a designated
prep and cooking area to ensure the food is safe.
Finally, I wanted to know how policies and accommodations are handled in the relationship between the university and contracted food service vendors. I was unaware prior to interviewing Mr. Schaefer about how exactly this got handled. Schaefer states, "Because of specific privacy laws, some information is not available to the food service provider. This can be a challenge since students don’t need to declare this information or can keep it private, which makes no sense since the sharing of information can be lifesaving." He went on to say, "There must be a good relationship between the university and food service provider (FSP) to make this work. This is not always the case, as sometimes the FSP isn’t aware of students with food allergies or special diets and can be surprised one day with special dietary requests that they are not prepared to accommodate."
In all of the interviews I have conducted and the research I have done, it truly seems that communication and self-identification is the first and most important key to successful food allergy management. I know this to be true as I have managed the allergies of my soon-to-be 5-year-old! One of my most (if not the most) important roles I have as a food allergy parent is to do the legwork to identify my son as a child/student with food allergies for all of his caregivers and ensure that each and every meal is provided and safe. But I also understand, even more now, that the other thing I must do is TEACH my child to do this for himself as gets older, and to make sure that he is equipped to do for himself then what I do for him now. In this case, the "caregivers" are the folks at the university trying to take care of and manage food allergy care for students; they cannot do this job well if students do not communicate and self-identify.
Thank you, Mr. Schaefer, for your passionate work in this field - I am proud to have interviewed a difference maker in our community!!
One of my other courses in my graduate studies this semester is a legal issues class - so my mind is on legal issues as well. I was unfamiliar with this case until I did some digging for this class, and it is an important case when it comes to establishing what colleges and universities must do to accommodate students with food allergies, particularly in dining services.
The first food allergy-related settlement in higher education under the Americans with Disabilities Act (ADA) was reached between Lesley University in Massachusetts and the U.S. Department of Justice (DOJ) in December of 2012. According to the Department of Justice, "Lesley University previously required all students living on campus to participate in, and pay for, its meal service plan - even if some students with severe allergies could not eat the food available through the plan without risk of illness" (Department of Justice, 2013).
Terms of Settlement:
Under the Agreement, Lesley University made adjustments to its meal plan to allow students with food allergies to safely access all of its food services. Lesley University was also required to consider a policy that exempts students from the mandate requiring a meal plan for those who cannot take full advantage due to a disability.
According to the DOJ, "the agreement ensures that students with food allergies and celiac disease can fully access the university’s meal plans and food services" (2013). Colleges and universities must understand that food allergies are considered a disability under the American with Disabilities Act and plan accordingly. Failure to accommodate students with severe, life threatening food allergies opens the institution up to lawsuits and legal action.
As food allergies continue to rise and the number of students with identifies food allergies on campus grows, higher education institutions will need to closely examine policies that might possibly exclude a student with a food allergy. These policies could exist not only in dining services, but residential and academic settings as well. It would be prudent to examine and update policy now before numbers increase and the food allergy epidemic becomes more difficult to manage on college campuses. It is my stance, from a legal perspective, that it is better to be proactive rather than reactive.
For more information I encourage you to read the Questions and Answers Document released by the Department of Justice about this settlement.
Department of Justice (2013). Questions and answers about the Lesley University agreement and potential implications for individuals with food allergies. Retrieved from https://www.ada.gov/q&a_lesley_university.htm
When I set out to research the work that has been done in higher education food allergy management, I first to FARE and combed through their Pilot Guidelines for Managing Food Allergies in Higher Education. In those guidelines was a long list of names of the people who contributed to the guidelines, and among them was Ms. Laura Patey. Ms. Patey is the Associate Dean for Student Academic Services at Wesleyan University. I emailed Ms. Patey several questions about her involvement in the development of the Pilot Guidelines and her viewpoints on higher education food allergy management and followed up with a delightful thirty minute phone call. To say that I was impressed with what goes on at Wesleyan is a true understatement. This university of approximately 3,000 students does so much to assist and serve its students with food allergies - it is a model of what best practice is for food allergy management!!
I first asked Ms. Patey about how she came to be included in the development of the Pilot Guidelines, and she explained that it stemmed from her involvement in a presentation on dealing with food allergies in higher education at MIT in the spring of 2015. She was then asked to attend a summit in Arizona that was sponsored by FARE, and described it as a wonderful time for various stakeholders (parents, students, representatives from food services, department of justice representatives, and more) to collaborate and come up with best practice ideas. Following her work on the guidelines, Wesleyan applied and was accepted to participate in the pilot program that was run by FARE.
I then asked Ms. Patey what she believed is the biggest issue/challenge facing college campuses as they seek to manage food allergies, and she described it as a three-pronged issue: getting students to self-identify, that this age group is seeking independence, and a lack of coordination or team approach to managing food allergies. Ms. Patey elaborated and emphasized that, from a disability services perspective, it is crucial for students with food allergies to self-identify. Disability services can only provide services as requested.
When it comes to how food allergies are managed at Wesleyan, Ms. Patey described the many, many ways that Wesleyan has stepped up its game when it comes to assisting students. First, all accepted students at Wesleyan are mailed a notification form for accommodation requests, and food allergies are included. This form allows students to inform the university of the services that they will need. Ms. Patey also explained that there is a real team approach at Wesleyan, and that the health records that students are required to submit before they attend are examined, and that students who appear to have food allergies are sent additional information as well. Ms. Patey is the point of contact for students who are identified as having a life-threatening food allergy. Students who appear to have an intolerance or other dietary concern are also encouraged to contact Ms. Patey.
Ms. Patey also shared that there is a student group on campus called EASY (Eating Allergy Safe and Yummy) that started as a group with celiac, but that the student founder realized that food allergy students needed help as well. These students meet on a regular basis, cook together, and there is even a nutritionist and dietician involved. These students focus on advocacy, management, and assisting incoming students - they even created a dining guide for incoming students on campus!
I asked Ms. Patey about Residence Life at university, and she said that she works with RAs to provide an Allergy 101 training and meets with students on the floor. The housing setup at Wesleyan is different than most universities in that it is a progressive model, where freshman live in more traditional dorms, but then move on to theme-based houses as sophomores. There are shared meals in these houses, so students with food allergies often need help navigating. They progress to apartment style living as juniors, and then live in groups of 2-6 in houses with friends as seniors. Ms. Patey and her office are there to assist students through this housing setup.
When I asked Ms. Patey if she wanted to share anything else, she brought up two things. First, external food vendors at Wesleyan that are not tied to dining services are invited to come to trainings with dining services. This is yet another way that Wesleyan goes above and beyond to protect its students. Finally, Ms. Patey shared that she has observed a large increase in the number of students carrying epinephrine since she arrived in 2013. In fact, between 2015 and 2016 alone, the number of students carrying epinephrine more than doubled. When I mentioned my interest in studying higher education food allergy management because I believed that there was going to be a huge influx of food allergic students, she said she truly believes it is here now.
I am so deeply grateful to Ms. Patey for agreeing to discuss her ties to food allergy management and to share the work she and others are doing at Wesleyan to protect and assist students with food allergies. The programming and policies that exist at Wesleyan reflect a lot of time and dedication, and all involved should be commended for what is truly an ideal setup for food allergy management!
I have already been asked about my choice to focus on food allergy management specifically in higher education.
"Aren't these adults old enough to manage their food allergies?"
"Shouldn't college students be responsible for their own management?"
"Don't most kids outgrow their food allergies anyway?"
College-aged students should be able to manage their own food allergies, but these students are also reliant upon services provided by the universities in order to be able to effectively manage these allergies. Food allergy management in higher education is not simply about dining services, but also must be a part of residential services, health services, and in some cases, must be considered for academic accommodations. It is important to note that, under the American with Disabilities Act (ADA), food allergies can be considered a disability if it severely limits one or more major life activities. Disability services must also be involved in food allergy management in higher education. Given the number of departments/services just listed, I believe that it is important that there be an individual designated to serve as a liaison between these departments to assist students with their own food allergy management.
College-aged students, while adults, are also considered to be a group that is both seeking independence and a group that engages in more high-risk behavior. Access to epinephrine (more on this later), methods of educating all students on proper protocol in the event of a food allergy reaction, and student groups and organizations that serve to be inclusive and advocate for students with food allergies can help students feel empowered to more effectively self-manage their allergies.
While it is common for some kids to outgrow food allergies, the truth is that the food allergy epidemic is here to stay, and the numbers of students who enter college with life-threatening food allergies is on the rise and will continue to rise as the years go on. Currently, 1 in 13 children have a food allergy, and more than 15 million Americans have a diagnosed food allergy. Teenagers and young adults are the most at-risk for having a fatal anaphylactic reaction. I believe that the influx of students with food allergies that K-12 schools saw in the last decade is about to hit higher education institutions, and that there is a lack of awareness about what is coming.
And that's where my interest in raising awareness through this blog/social media campaign comes in.
Over the course of this semester, I have read countless articles and interviewed stakeholders in food allergy management in order to highlight what is being done well around the country, and to make recommendations for those in higher education. For the remainder of April, I will share what I have learned on my Facebook, Twitter, and Instagram pages as well as through information added on this site.
Thank you for your interest in my work! You may reach me anytime via my social media pages, or by emailing me at firstname.lastname@example.org
As evidenced by the data presented on my various social media outlets the last few days, there is a widespread problem when it comes to teenagers/young adults carrying their epinephrine wherever they go. College students themselves admitted to an astonishingly low carry rate - only 9.6% always carry (Guidicessi, Rubes, Kim, & Annunziato, 2015). And in a review of 31 food allergy fatalities between 2001-2006, it was documented that none of the individuals ages 16-24 who experienced a fatal food reaction (there were 12) had definitive access to epinephrine (Bock, Munoz-Furlong, & Sampson, 2007).
It is clear that the very first measure for protecting college students with food allergies falls directly on the student themselves. As adults, they must understand the severity of a life-threatening food allergy and protect themselves by carrying epinephrine at all times. However, developmental theory points to the fact that this age group is known for taking high risks and seeking independence. Additionally, most commercial self-injectable epinephrine is not particularly convenient to carry, and the individuals in this age group is also known to reject anything that makes them different.
According to Food Allergy Research and Education (FARE), due to the increase in the prevalence of food allergies, "some states have passed college and university-specific legislation that allows, but does not require, post-secondary education institutions to stock undesignated epinephrine" (n.d.). More states allow for stock epinephrine in public entities, which would include colleges and universities. At a minimum, it would be a prudent and proactive measure for colleges and universities to stock epinephrine in the two most common places where food is found: dining halls and residence halls.
Stocked epinephrine would not only protect those who have known food allergies, but also those who have an anaphylactic reaction to a food for the first time. While not directly related to higher education, research has shown that 25% of anaphylactic food reactions that happen in schools (K-12) are first time occurrences (McIntre, Sheetz, Carroll, & Young, 2005). A serious, sudden reaction to a previously safe food can happen at any time - stocked epinephrine would have the potential to save the life of any student who experiences anaphylaxis.
We have all seen automated external defibrillators (AEDs) in schools and other public venues. These devices save the lives of people who go into sudden cardiac arrest. Given the prevalence and rise of food allergies, as well as the understanding that anaphylaxis can happen even if you've never experienced a reaction before, I believe that there should be a large-scale movement to increase public access to life-saving epinephrine, especially at colleges and universities.
Bock, S.A., Munoz-Furlong, A., & Sampson, H.A. (2007, April). Further fatalities caused by
anaphylactic reactions to food, 2001-2006 [Letter to the editor]. Journal of Allergy and Clinical Immunology, 119(4), 1016-1018.
Food Allergy Research and Education (n.d.). College and university access to epinephrine.
Retrieved from https://www.foodallergy.org/advocacy/advocacy-priorities/college-
Guidicessi, A., Rubes, M., Kim, J., & Annunziato, R. A. (2010). Dangerous liaisons: The
burden of food allergy self-management in college. Health Behavior & Policy Review, 2(5), 372-377. http://do.doi.org/10.14485/HBPR.2.5.5
McIntre, C. L., Sheetz, A. H., Carroll, C. R., Young, M. C. Administration of epinephrine for life-threatening allergic reactions in school settings. J Pediatr. 2005; 116(5): 1134- 1140
Nearly four years ago, my world was shaken when my youngest son, Matthew, had his first anaphylactic reaction to green peas at 12 months old. There is so much uncertainty and fear surrounding life-threatening food allergies, and I remember that feeling all too well.
I committed to doing whatever it took to make life "normal" for my son. I read countless blogs and articles, scoured websites like FARE, and joined a local support group. Over time, I gained confidence in the kitchen and in managing my son's every day life. I felt empowered!
About a year ago, Food Allergy Arsenal was born. After Matthew's diagnosis, I had several friends who received their own life-changing news, and given the prevalence of food allergies, I knew millions of other families were also impacted. I had learned so much, developed my own recipes, and had created my own "arsenal" of ideas and tricks to manage food allergies, and I knew that I just had to share.
Also about a year ago, I began work on my M.Ed. in Higher Education Administration. During one of my classes last fall, one of the assignments was to present on an emerging issue in higher education: I selected food allergy management. It was at this point that two major interests in my life collided, and where this portion of my website, a real focus on higher education and food allergy management, was born.
I have worked tirelessly this semester to develop meaningful content for this focus, and I am looking forward to sharing with you what I have learned!
My name is Brittany Dye, and I am a food allergy mom and a graduate student in higher education administration at Middle Tennessee State University. These two parts of my world have collided, and I am passionate about successful food allergy management in higher education.