This newsletter interview of my son, Morgan, occurred in January of 2006. I will be continuing to add these “old” interviews to this blog.

Morgan became 10 years old the end of that January. At the time, he was anaphylactic to peanuts, tree nuts, sesame and shellfish. He was severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees.

If you were suddenly not allergic to peanuts, would you want to eat them? 
No actually. I would not. I don’t really know why, but it just seems that I don’t like them, even if some day I’m not allergic to them.

If someone comes up to you in the lunchroom with peanut butter and jelly and wants to sit next to you, what do you tell them?
I tell them, “Can you please move away, I’m severely allergic to peanut butter.” Usually, that doesn’t happen very often because my friends literally swarm upon me protecting me. If that doesn’t work, I go tell the lunchroom monitor, or my Vice Principal, who usually walks around the tables.

When you go to birthday parties, what do you do to keep yourself safe?
I bring my own snacks to birthday parties, actually. Just to be safe, I check the ingredients on everything they serve, but if really nothing’s safe, I just eat what I brought.

Do you ever go on sleepovers? What has to be done for you to be able to attend?
If I ever go to a sleepover, I only go to a dog and cat free house, and I make sure they’re not having peanut butter and jelly sandwiches for dinner with sesame buns! I bring my own food for a sleep over, so really, I bring everything from home that is safe for me.

What do you fear most around your allergies?
I fear most that I will have an allergic reaction eating something that the label did not say something that I was allergic to was in it, and end up in the hospital.

Have you ever had to use your epinephrine kit?
No. I have not. I have had to go on Prednisone steroid a few times after a bad allergic reaction to something we never figured out. And I’ve taken Benedryl lots of times after a dog licked me and after eating eggs, which I used to be allergic to.

Do you think you could give yourself the epinephrine shot if you had to?
Yes. Only if it was right in the beginning of the shock, so I could still use my hands and not feel paralyzed.

What can you tell other children who have food allergies to give them help and hope?

I always tell them to stick up for them selves and always read labels. Those are what I mainly say, although I also give other advice. Also, besides reading labels and sticking up for your food allergies, just bring your own stuff everywhere if it’s out of your house just to be safe. If you go into anaphylaxis, have people know what to do if it ever happens. Have them know where your Epi Pen is and other medicine is. Don’t have them not know what is happening if you do go into anaphylaxis.

To read “Part 1”, please click here.

Back in December of 2005, I began sending out a monthly newsletter from me/AllergicChild. This was long before blogs came into being!

I created a Morgan’s Corner in the newsletter for our then 9-year- old son to answer questions about living with food allergies. Morgan is now 22 years old and a college graduate! Yet, many of these memories from these interviews are worth saving on the blog and sharing with you.

You will notice in the interview below that Morgan doesn’t list Fish as an allergy. He had yet to experience anaphylaxis on a camping trip to trout that illuminated the allergy!

I’m sure many of you will relate to his successes and challenges as I continue to add these to the blog and share them.

How old are you Morgan?
I’m 9 years old and in the 4th grade.

What are you allergic to?
Peanuts, Tree Nuts, Shellfish, and Sesame. I’m also allergic to Dogs and Cats, although it’s mostly anything that’s alive with fur on it. Although those are but a few what I am really allergic to, those are my main.

Do you ever remember not having allergies?
No, I do not remember not having food allergies. I was really young when we found out, so I don’t remember.

What’s the worst part of your allergies? In other words, what do you wish you could change?
I don’t know really what the worst part is. It’s either not going over to a friend’s house or I can’t eat something. I also wish that I did not have dog allergies just because a lot of my friends have dogs, so they have to come over to my house instead of me going over to theirs.

Have you ever been teased because of your allergies?
Well, twice actually. Once, a friend of mine went running around the playground, of course chasing me, holding a peanut butter cracker and yelling “Eat it Morgan! Eat it!” Another time is when another one of my friends actually went around chasing me pretending to be a peanut butter sandwich. All these times, I went and told the teacher and they did get in to trouble. We’re friends now, and I don’t think about it much anymore.

Have you ever been left out of activities because of your allergies? If so, what? How did that feel?
Food Fights, Food Fights, and more Food Fights. Seriously, I have to either not participate, or check the labels on all foods at a party at school. That usually takes a long time though. It sometimes felt great that I’m safe, but I also want to participate. I have also been left out when my 1st grade classroom went next door and I couldn’t go in. The classroom wasn’t peanut free. I told my teacher how it felt to be left out. She cried, and it didn’t happen again.

Food Allergy Awareness Week is May 14-20 this year. Several of the food allergy non-profit groups have resources and suggestions for you to increase food allergy education and awareness in your community.

FARE (Food Allergy Research and Education) has resources and links here. FAACT (Food Allergy & Anaphylaxis Connection Team) has ideas of activities here. Kids with Food Allergies has social media awareness tools here. Turn It Teal has a listing, and an ability for you to suggest a location, of all buildings lit in teal (the food allergy awareness color) during the week here.

There has been a big push to get elected officials to declare the week with a proclamation. I’ve always felt that unless this is followed by specific education, and awareness information disseminated to the public about food allergies, or a food allergy awareness event, there is little gain for the food allergy community with a piece of paper.

When my son was in school at a public K-12 school district, our Food Allergy Task Force would create a press release for each of the 30 schools in the district (elementary, middle and high school) detailing information about food allergies – how many children have food allergies, what the symptoms of an allergic reaction are, and how to have fun without food! These public service announcements were very valuable and generated discussions for families, teachers and administrators. This Task Force is celebrating 10 years of existence this spring, and continues to create more food allergy awareness throughout the school year.

For May 14-20 of this year, create some food allergy awareness in your family, with friends and/or in your community! It may save a life.

If you’re worried that this is going to be a political tirade – never fear. Instead, I want to share with you our family’s experience about the value of the Individuals with Disability Education Act (IDEA), Section 504 of the Rehabilitation Act, and the Americans with Disability Act on my son’s education.

When my son, Morgan, started kindergarten in the Fall of 2001, we had already experienced every private preschool in our city denying my son entry. There was minimal food allergy awareness at that time, and no one had heard of a child reacting to touching peanuts! Preschool teachers and administrators were afraid to learn how to administer the EpiPen and didn’t want to take on the liability OR they didn’t want to provide an allergen free classroom. Therefore, they said they didn’t want him as a student.

This was heartbreaking to my husband and I. We had no idea what it felt like to be denied schooling for our child. I had big thoughts about filing a lawsuit against the various preschools, however I soon realized that I didn’t want to fight for Morgan to be admitted to a school that didn’t want to take proper care of him.

I continued my search, and my son finally landed in a public preschool within our school district, where the teachers were more than willing to provide an allergen-free classroom and to learn how to administer the EpiPen should that be needed. Thankfully, he had a wonderful experience, and never had an allergic reaction since they removed all of his allergens (peanuts, tree nuts, sesame, fish and shellfish) from the classroom.

Once he started kindergarten, the elementary school counselor had the foresight to put Morgan on a 504 Plan.  She had already met with the school district 504 Coordinator prior to the start of the school year, and had received approval. This provided accommodations for him to have equal access to the curriculum. The Plan was pages long outlining classroom safety, EpiPen training, field trips, playground monitoring, and stipulations for all the other classrooms he would visit in a school day being allergen-free in addition to many other items.

This was long before the ADA Amendments Act of 2008 when eating was added as a “major life activity”, so the school district was really stepping out to put Morgan on a 504 Plan, (which he kept from kindergarten through 12th grade). I know many of you reading this are likely still fighting for all the 504 accommodations you believe your child needs. We were completely blessed with a school district who not only understood the law, but also were child-centered and wanted to create a safe, educational environment in which every child can learn.

Parents of other children in the classroom (and the school!) weren’t happy about the accommodations, especially if it meant that their child couldn’t eat a Snickers bar for snack. The school Principal kept a strong backbone, and stood up for Morgan (and me!) more times than I can count. She knew the law, and she knew what was right and what was necessary for Morgan to be in school safely.

If you’ve been reading my blog (and newsletter before that), you know that we had many ups and downs through the years battling other parents bullying and ignorant teachers. Yet overall, our experience was good, because 1) Morgan never did experience an allergic reaction and 2) if there was ever a question that the 504 Plan wasn’t being followed, a Team meeting was immediately called and the Plan prevailed.

During Morgan’ senior year of high school, he applied for and received the Boettcher Scholarship, a 4-year, full ride scholarship (available only to Colorado high school seniors) to any Colorado college of his choice. Only 40 scholarships were given his graduation year, which makes it the biggest honor of any Colorado senior. This is what equal access to the curriculum can yield from a Free Appropriate Public Education.

With all of our experience as a backdrop, when I read about the confirmation of Betsy DeVos as the Secretary for the Department of Education, after a hearing in which she, at best, is confused about the IDEA, and at worst, doesn’t realize it is a Federal law, I think of my son. What would have happened to his education had he not been admitted to an elementary school because of his food allergies? Or if he had been admitted, but had to worry every day about allergens in his classroom? You can’t learn in those situations. And it’s why we food allergy parents need to ensure that the IDEA remains in the forefront of Ms. DeVos’ mind as she seeks to revamp the entire public education system.

I received an email today telling me about the new Mylan and Disney digital book, “Show-and-Tell Scout”. The email went on to state, “Mylan and Disney are excited to announce the launch of the “Show-and-Tell Scout” digital book, an educational storybook aimed at raising awareness about anaphylaxis (a life-threatening allergic reaction) in the school setting. An estimated one in 13 children in the U.S. lives with a food allergy, putting them at an increased risk for anaphylaxis. Because anaphylaxis can occur anywhere and at any time, it’s important to educate all families about food allergies – even those not managing a food allergy at home.

“Show-and-Tell Scout” follows the story of Scout, a young fox living with potentially life-threatening (severe) allergies to milk and peanuts. We learn about his severe allergies and the importance of being ready to respond should he experience anaphylaxis.

The “Show-and-Tell Scout” digital book is available exclusively on, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents.  The “Show-and-Tell Scout” digital book is available exclusively on MyAllergyKingdom.com, which provides allergy-friendly resources for families, including recommendations, tips, and real-life stories from experts and parents.”

I think this is a great idea for these two companies to combine efforts to put out information on food allergies. However, there is a lot of information that I don’t agree with in the text of this book.

Here is the email I sent to the team that emailed me: “Thank you for forwarding the book to me. It’s exciting that Disney and Mylan are launching this book.

I wonder if there’s a possibility of changing the language in this book prior to releasing it to everyone? There are several items in the book that just aren’t correct:

On the page about Mrs. Fox telling the teacher on the first day of school about Scout’s allergies – based upon our experience and thousands of others – no teacher wants to hear about allergies on the first day of school. For the success of a child with food allergies at school, it is ALWAYS recommended to have such discussions months in advance of the school year starting.

Secondly, no parent is going to be allowed to train a teacher how to administer an epinephrine autoinjector. In every public school, it will be the responsibility of the school nurse to do this type of training. I believe it is required by law in our state of Colorado.

This is a somewhat detailed point, however any child who accidentally eats one of their allergens would never walk to the nurse’s office. The nurse would bring the epinephrine autoinjector to the child. It is dangerous for a child in anaphylaxis, or where anaphylaxis is a potential, to remain upright and walking.

Other items that I noticed, and that I believe other food allergy families would notice, is that Scout is sitting with children eating his allergens. This can be a dangerous practice, especially for young children who spill food, and for those exquisitely sensitive to their allergens.

Lastly, many children with severe food allergies will have a 504 Plan in addition to a severe allergy action plan. Of course, this plan would only be available in public schools, but might be worth a mention in the back of the book.”

While I believe the intent of the book is good; I’m not supporting the book as it is currently written. I’m hopeful that an edit will be forthcoming soon.

Some of you may think that you live in the best school district for managing food allergies. Some of you may think you live in the worst! For us, we KNOW we live in the best district! Many of you have heard me speak about how wonderful our district has been about providing 504 Plans, guidelines, policy and most of all care for food allergy students.

Since Morgan recently graduated, we thought it was time to give Academy School District 20 a formal thank you tonight by attending the school board meeting.

Here’s a part of what I shared:

Our story for tonight begins in 1999, when we began looking for a preschool for Morgan. No private preschool in Colorado Springs would accept him as a student because of his life threatening food allergies. They didn’t want to take on the liability. I was heartbroken, and I didn’t know where to turn.

I approached the District 20 preschool and explained his severe food allergies to the teacher, Miss Linda. When I explained that she would need to keep his allergens out of the classroom and learn to administer an EpiPen, she stated “That’s It?” I can’t tell you the relief I felt. Morgan enjoyed two years of preschool there before attending Foothills Elementary school for kindergarten. That’s when the real challenge began.

There have been so many teachers, counselors, school nurses, custodians, bus drivers and staff members who have been willing to learn about food allergies, and to help Morgan stay safe at school. It would be impossible to thank all of them, but we are so appreciative for how wonderful the D20 teachers and staff have been to keep Morgan safe and included.

There is one Administrator at the district level that we have to thank.  The Director of Legal Relations has been instrumental with the creation and ongoing efforts of the Food Allergy Task Force which began in 2007. This committee has spawned similar groups in school districts across Colorado. The creation of guidelines for severely allergic students in our district was used as a basis for policy at the state level in 2009 when legislation was introduced and passed. District 20 has always been on the forefront in education, and your support for guidelines and policy to keep children with food allergies safe continues that stance.

Morgan never had an allergic reaction at school, and that was due to the incredible teachers, staff and administrators in District 20. 

Here’s part of what Morgan shared:

I’d like to directly thank two individuals who are also here this evening. First, my elementary school counselor. When I first entered elementary school, there weren’t any procedures or policies to deal with food allergies. She had the foresight to put me on a 504 plan that provided accommodations for me to safely attend school and be included – a plan I kept even through my Senior year of high school.  

Second, I would like to also thank my Principal at Foothills Elementary, for being my champion. She took a hard line and kept a strong policy with parents who didn’t want to abide by classroom accommodations, like an allergen-free classroom. Some of these parents, as I’m told, were particularly vicious, but she kept her stance that school needs to be safe for all children to attend, and I would like to thank her for that. 

But finally, I would like to thank you, all of you. You have created one of the kindest, most open and accommodating school districts in the nation. I cannot express my gratitude for your willingness to help me and other food allergic students in this district. Many other children are not as fortunate to have such welcoming attitudes; they face obstacles on a day-to-day basis, and their parents fight teachers, principals, school boards, and even superintendents to keep kids safe.

Thank you. Genuinely, thank you for 15 wonderful years. I would not be standing here, a successful graduate of Air Academy High School without you all, teachers and administrators alike. I’ll be proud to represent Academy School District 20 at the University of Denver as a Boettcher Scholar in the fall. 

Morgan and I had the pleasure of posing for a picture with Academy School District 20 Superintendent Mark Hatchell at the Board meeting. His leadership keeps more than 600 students with life threatening food allergies safe and included in the school district.

I hope that your experience with your child’s school and school district is as positive as ours has been!

Nicole Smith is the Founder of AllergicChild.com and the author of three best-selling children’s books about food allergies. Allie the Allergic Elephant: A Children’s Story of Peanut Allergies was her first foray into writing. She is an almost-native of Colorado, and continues to speak and advocate for children with food allergies at the state level and in her school district’s Food Allergy Task Force, in addition to writing a blog about living with food allergies on AllergicChild.com.

Gina Clowes is an author, speaker and Master Certified Coach whose advice and parenting tips have appeared in numerous print, radio and television features including CNN, ABC World News Tonight and People Magazine.  She is the author of the best-selling children’s book One of the Gang: Nurturing the Souls of Children with Food Allergies and writes a regular column The Parenting Coach for Allergic Living Magazine.

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Children with food allergies don’t come with an instruction manual, so it probably wouldn’t surprise you to know that over the years we’ve received thousands of emails and phone calls from parents struggling to manage their child’s food allergies. As our allergic children are both teenagers now, we have the benefit of hindsight.  We can easily spot common mistakes that parents make because we’ve made the exact same mistakes ourselves at one time or another.

If you’re like us, you’ve seen a lot of articles telling you what to do to help your child with food allergies at school, camp or on a sleepover. In this article, we’d like to try a different approach by outlining some of the most common mistakes that parents of food allergic children make. Our hope is that with a heads up and some advance warning, you can learn from our mistakes without the painful consequences.

Mistake #1: The Unprepared Parent

Nicole:

I really feel for the Mom who calls or emails me two weeks after school has started. She is likely to have a kindergarten student, and hasn’t done anything to prepare the school for her child’s allergies. Inevitably her child is contact allergic in addition to ingestion allergic, and therefore the child needs a number of accommodations. The school is overwhelmed and balking at everything she is requesting. This Mom is likely crying and overwhelmed herself. What did she do wrong? She didn’t prepare the previous spring before the school year started!

It’s unfair for a parent to expect a school/school district to be able to manage a child’s food allergies if they are informed on the first day of school! Lesson plans frequently need to be changed, epinephrine autoinjector training needs to be done…there are so many details that cannot be completed on the first day of school.

Gina:

Some parents think that a passing conversation they had with the nurse at the kindergarten registration or with the principal months ago laid the foundation for a safe plan for their child.

Then they are devastated when they find out that the bus driver is not trained and their child is sitting alone at lunchtime or during classroom birthday celebrations. These parents expect their schools to be ready to accommodate allergic children but in many cases, they’re not.

Developing an individual written accommodation plan is one of the most important projects parents will ever manage. It takes planning, education and dedication to see this through. A great place to start is by reading the CDC Guidelines for Managing Food Allergies in Schools to learn about the recommended practices for parents and school administrators.

Mistake #2: Ineffective communication

Gina:  Another issue I see with parents is that their communication style affects the process in a negative way.  I’ve received emails that are 300 words long in one dense block of text. And even upon re-reading, I’m not sure what the parent wants or needs.

Before you open your laptop, know why you are emailing.  Start with a concise request, and then fill in the details.  Then re-read your message to make sure that the tone is appropriate and that your message is clear.

Nicole:  I’ve found that I also need to read and re-read my emails to ensure that I’ve spelled everything correctly. Anaphylaxis needs to be communicated as a serious issue, and spelling it correctly – along with EpiPen, Benadryl, and Auvi-Q – are all important to ensure that school personnel get educated appropriately.

Mistake #3: Asking for too much

Nicole: When my son started kindergarten, our allergist wrote a letter to the school district 504 Administrator outlining exactly what he needed to remain safe in school. In our case, the main items were an allergen-free classroom and peanut and tree nut free zone in the lunchroom(figuring that most children wouldn’t be bringing in fish or sesame for lunch); and for kids to wash hands after lunch.

Had we asked for a peanut-free school without the medical support of our allergist, we would have been asking for too much. And in our son’s case, a peanut free school would do nothing for his tree nut, sesame, fish or shellfish allergies.

Gina: I am all for restricting food or allergens from the classroom, the learning environment, especially when there is a separate cafeteria. However, school-wide bans are often not a feasible food allergy management strategy especially when you are dealing with milk, wheat, or egg allergies.

If a district decided to manage food allergies with a school-wide ban for a peanut-allergic child, what would they do when they had a child who was severely allergic to milk and egg?

Would you ban a food for one child but not the other? Again, restricting food or allergens from the classroom is different and is an accommodation that can work well to foster inclusion and minimize risk of exposure.

Mistake #4: Taking on the burden of all accommodations yourself

Nicole: I made this mistake with my son at first. He was the first child with severe food allergies that our school district had ever educated. We were blazing a trail, and when the kindergarten classroom teacher wanted to hand out safe treats to all the students DAILY, I provided a safe snack for my son to have. I also provided safe cupcakes for birthday celebrations frozen in the school freezer for ‘just in case’ a party occurred! Today, I wouldn’t do that. I would ask that either all the students have no snack or I’d ask that every child get the same snack that would also be safe for my son.

Gina: What tends to happen is that teachers and other school officials think that when Johnny needs a treat due to an upcoming birthday celebration, it is his mother’s job to provide a safe one. When in reality, if the school is serving a free treat in class, there needs to be a free treat for Johnny as well, and it needs to be safe for him. For classroom parties and other school celebrations, schools are responsible for what is served in the classroom regardless of who bakes or buys it. This doesn’t mean that parents can’t send in “safe” treats for their child. This option should be available to parents, however it should not be a requirement.

Mistake #5: Disclosing Private Medical Information

Nicole: We probably disclosed too much when our son was in elementary school. We wanted for everyone to know about his food allergies so that he would be safe. The problem was that it backfired and our son ended up getting bullied because other boys knew where he was different. And kids being kids – they pounced on that! I’ve learned that it isn’t necessary to give all the parents, teachers and students the medical details about my son’s food allergies. Instead, it’s the school’s job to adhere to the 504 Plan and FERPA (Family Educational Rights and Privacy Act).

So, it’s not up to the parent to send out a letter stating, “my child has food allergies, please keep him safe.” The school needs to send out a letter stating, “we have students in kindergarten who have milk allergies, please refrain from sending in any food with dairy.” It’s best if this letter is signed by the school principal and/or school nurse.

Gina: Severe food allergies weren’t often recognized as a disability back then, so parents felt they needed to take on the entire burden themselves. They were trying to get classmates and other parents to understand in the hopes that they would protect the allergic child. They were asking for favors from the other parents to keep their child safe and included. I favor a more formal approach.

We don’t have wheelchair ramps, rails in bathrooms and handicap parking spaces because someone asked for a favor. Accommodations like these are made because they are the law.

It’s fine to educate all students about food allergies in general, and certainly kids can let their friends know about their allergies.  However, in my experience appealing to classmates is not the most effective approach to keeping your child safe and included at school.

Mistake #6: Not understanding the law

Gina: This leads into the most serious mistake that parents can make- not understanding the laws as they pertain to severe allergies in school.  When we have our first baby, we typically buy the book, subscribe to the magazines, and we read about the pacifiers, formulas and car seats. We acclimate to a whole new world. It’s a similar shift in reality when you have a child with food allergies, but some parents don’t buy the book, or read the reports.

Advocating for your allergic child in school is the most important job you will likely face. It is a huge undertaking that takes education and preparation. It’s a project. If you approach it casually, by chatting with this person and that person, by thinking you know the facts by comments you read on social media, you’re likely to start off on the wrong foot. When this happens, it’s difficult to right the ship.

If you haven’t started yet, I’d encourage you to start by reading the CDC Guidelines for Managing Food Allergies in School and Early Care and Education Programs.  Learn the laws and the recommended accommodations, plan how you will proceed, and document your steps throughout the process.

There is a concept called “Sensitivity to Initial Conditions” and this means that subtle differences in the beginning can result in wildly different outcomes at the end. I’ve seen this play out time and again with parents and schools.  Your initial contact with the school including the form and content of your communication, and your tone and demeanor lays the foundation for your relationship going forward.

Nicole: We were lucky that our school district understood the laws available to them in 2001 when our son started kindergarten. Additionally, my husband and I had an understanding that anything we agreed to with our school district needed to be in writing.

We relied on the 504 Plan and the Food Allergy Action Plan that were developed to keep our son safe and included. We started out on the right foot by having both of these plans prepared in the spring before he started kindergarten. The principal of the school and the school nurse together wrote the letter to kindergarten parents asking for none of our son’s allergens to ever be present in the classroom. This was met with much consternation on the part of several parents. Yet, these two school professionals took on our son’s medical condition with decisive action and kept my husband and I updated with any issues that they had to handle. It has been a partnership with the school district ever since between our family and the district staff. We had the law on our side, and thankfully a wonderful school district that was more than willing to abide by the law and to do anything necessary to keep our son safe and included.

When food allergy parents learn to advocate well for their child, they pave the way for every parent who comes after them. They makes it that much easier for the next parent and that much safer for the next child. Every conversation, every email, every EpiPen or Auvi-Q training is like a coat of paint that we apply and someday soon, we’ll have painted a whole new landscape: a world where food allergies are understood and accommodated everywhere.
 

Through the years, I have received hundreds of emails and phone calls from parents asking if their child with food allergies needs a 504 Plan in school. From my experience, the answer is a resounding YES. Too many parents think that a 504 Plan is only written once things go sour with a school district. That is not correct! Or they think that their Health Care Plan is enough. That may be true, but the sad part is that you’ll only know if it’s untrue after a serious issue has occurred. Lastly, they think that since their school district has guidelines for food allergic children, their child’s teacher is already on board with food allergy accommodations. Sometimes that may be true, but when it’s not – it sure is nice to have a 504 Plan in place!

Your child needs a 504 Plan in place on the first day school starts. (By the way, your child needs a Health Care Plan too, and the staff needs to be trained how to administer your child’s epinephrine autoinjector. And all of this needs to be done prior to the start of the school year!)

What is a 504 Plan?

A 504 Plan is a written plan of accommodations for your child to safely attend school and to be included. Section 504 of the Rehabilitation Act of 1973 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance. So, we’re talking about some food allergies being labeled a ‘disability’. 

A publicly funded school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function (such as breathing or eating in the case of severe food allergies). There is no cookie cutter approach. Two children both having food allergies and a 504 plan would not have the exact accommodations in a 504 Plan. And there are some children who, when evaluated, will be determined to not need a 504 Plan. For example, a child allergic to goats will likely not require accommodations to be in a school classroom safely, while a child severely allergic to dairy likely will. The 504 Plan is written in a group setting of your child’s teacher(s), the principal, the school counselor, school nurse, the parents and the child (age appropriate). There may be others in attendance depending upon your school district’s policies.

How does a 504 Plan differ from a Health Care Plan/Allergy Action Plan?

Some school districts will use this language interchangeably. We use the Health Care Plan for the emergency actions to take in case of an allergic reaction; and the 504 Plan lists all the accommodations necessary for our son to be safe and included.

A Health Care Plan that includes written accommodations generally does not include procedural safeguards for parents to have should the plan not be followed.  A 504 Plan does include these procedural safeguards, and you will sign an acknowledgement at the end of the 504 meeting stating that you have received these. Should your child’s plan not be followed, pull out these papers and follow the items exactly as written to rectify the situation.

Why does your child need a 504 Plan?

From our experience, it has kept our son, Morgan, who is now a senior in high school, safe and included in school. If your child has a 504 Plan, it will not be acceptable for a teacher to ask you to keep your child at home while the rest of the class does an ‘unsafe’ activity. Instead, the activity will need to be altered so that your child can be included. A peanut butter birdfeeder project becomes a Crisco Oil birdfeeder project – and every student can participate!

From our experience, a required yearly meeting keeps everyone aware. Health Care Plans are supposed to be looked at yearly, but that doesn’t occur in every school. A 504 Plan requires at least an annual review which means that all the appropriate staff members are brought back together to discuss the necessary accommodations. Morgan always attended the annual meeting which provided additional information to the staff for what was working and what needed to be amended.

From our experience, written accommodations ensure that all staff know what is expected. If the school agrees to have the playground monitor take your child’s EpiPen to the playground every day, yet nothing is in writing, how does that information get passed on to the appropriate staff? Having a 504 Plan with that stipulation in writing ensures that the right people receive the right information.

From our experience, if/when the 504 plan isn’t followed there are procedural safeguards. When we have had issues with a teacher not following our son’s Plan, we have had a discussion with her. Then if the plan still isn’t followed, we’ve contacted her supervisor. This has only occurred once in 13 years of having a 504 Plan. But all it took was the statement – “this is stated in Morgan’s 504 Plan” to have the issue fixed instantly. No school wants to be reported to the Office of Civil Rights. Ultimately, if a 504 Plan isn’t followed, and the school/school district doesn’t provide a solution, that’s where the issue can go to be resolved.

If there are any accommodations necessary for your child to attend school, ask your school district to evaluate him/her for a 504 Plan. You’ll be glad you did!

More Resources about 504 Plans:

http://www.wrightslaw.com/info/sec504.index.htm

http://www2.ed.gov/about/offices/list/ocr/504faq.html

http://blog.foodallergy.org/2013/08/19/what-every-parent-needs-to-know-about-section-504-plans/

https://home.allergicchild.com/food-allergy-504-plans-title-ii-and-k-12-schools/

Since my son, Morgan, is now starting his senior year in high school, we’ve had a lot of experience with the anxiety of the start of the school year. It’s much better now, but I so remember the fear that I might miss something that would be the key ingredient in keeping him safe at school!

Hopefully, you have already visited your child’s elementary school and let them know (preferably last spring) that your child has food allergies and will be entering kindergarten – if that’s the case for you – or will be back for this school year with food allergies that need to be managed.

If your child has been homeschooled until elementary school, there will be an adjustment period for both you and your child. With our son’s experience in preschool being so positive, we wanted to continue that trend in elementary school.

There are generally a lot more children in an elementary school, multiple classrooms where your child will be, and likely a playground that is much further away from the office (where medications may be kept) and less monitoring on the playground than what occurred in preschool.

Here are some suggestions that we’ve found vital to keeping your child safe in grade school:

Set up a meeting with the principal to discuss your child’s needs and allergies.

Again, hopefully you’ve already done this last Spring. If not, make an appointment today! You don’t want to show up on the first day of school with an EpiPen and trying to tell the teacher how to care for your child while he/she is learning the names of 25 students. That isn’t fair to the teacher nor to your child.

Most public and private elementary schools today have dealt with a child with severe, life threatening food allergies. Other food allergic parents may take a more laid back approach which can cause confusion for a school administrator when you request more vigilant food allergy awareness and procedures. Do what’s right for your child based upon the advice of your doctor!

Have a letter from your allergist/physician stating the accommodations needed 

Your child may need an allergen-free classroom because of contact reactions to peanuts, for example. Your child might need a milk-free zone in the cafeteria for lunch. Your doctor has the best knowledge about your child, and should therefore put in writing what will be necessary for your child to safely attend school and to be included in all the academics.

Become knowledgeable about the laws available to manage food allergies

Public schools (those who receiving funding from the US Government) must provide FAPE – Free Appropriate Public Education. The term ‘reasonable accommodations’ was believed to be the standard in years past, but this standard is for colleges and employment. FAPE applies to children with food allergies.

Private schools likely do not receive funds from the US government, and therefore are subject to a different standard than are public schools. There are private schools that are willing to accommodate children with food allergies; however public schools are required to do so. Schools receiving government funds must comply with the Individuals with Disabilities Act (IDEA), Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA). The ADA Amendments of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities.

Have a Health Care Plan/Food Allergy Action Plan 

The Health Care Plan, also called a Food Allergy Action Plan, specifies the steps to be taken in the case of an allergic reaction. Distinguishing between the severe allergic reaction and the mild allergic reaction is very important. The school nurse may not be present at your child’s school every day. Therefore, someone not in the medical field would be responsible for noting the reaction and determining the correct course of action. The school nurse would be responsible for developing the Health Care Plan, and for training specific personnel.

You will want to have this plan in place BEFORE the school year starts. Also, EpiPen® training MUST occur before the first day of school. Children can have reactions at any time. Waiting until the second week of school, when things calm down for teachers, may be too late for your child in an emergency. Make sure to include a photo of your child so that all staff will know not only your child’s name, but what your child looks like!

Ask that your child with food allergies be evaluated for a 504 Plan

A 504 Plan isn’t just for those students who can’t get what they need to be safe at school. In other words, it doesn’t have to be a contentious relationship for your child to need a 504 Plan. A 504 Plan is provided so that your child can enjoy inclusion in all activities, and have the accommodations in writing. It’s a way for all the parties involved to have agreement.

Volunteer at your child’s school

Seeing what goes on in the classroom is vital to knowing how many times food is a part of the lesson. You can help provide examples of alternatives for peanut butter birdfeeders or sesame seed art projects.  Also, the staff gets to know you – and how nice you really are!

What makes an outstanding Food Allergy Aware School?

A school with outstanding food allergy awareness is willing to 1) provide accommodations in writing for your child for their specific allergies, 2) admit what they don’t know and learn, 3) follow a written health care plan (provided by your doctor) that outlines the steps to take if anaphylaxis were to occur, 4) train all necessary staff on the use of epinephrine, 5) have a school nurse in the building at all times, 6) include your child in every activity possible including field trips, 7) educate the community about food allergies, 8) refuse to allow any bullying behavior regarding food allergies, 9) find ways to celebrate without food and 10) stand up to parents (and educate them) who say that food allergies are ‘hogwash’!

Our school district has done all of the following except for having a school nurse in the building at all times. The middle school my son attended did have an almost-full-time health aide, but the elementary school did not. It still worked with the front office staff becoming thoroughly versed on allergic reactions and how to administer an EpiPen. Good luck to the start of your child’s school year!

Back in 1999, when my son, Morgan, was preparing to attend preschool, I began the search for an age-appropriate book for him to share with his classmates about his peanut allergies. He also had several other food allergies, at that time, but his contact reactions to peanuts made it the most worrisome. Sadly, there were no children’s books about food allergies anywhere. I came up with a wild idea that I would write a little book about peanut allergies that would teach the other preschool children why Morgan wouldn’t be sharing their snacks and that would also explain to them what an allergic reaction looked like.

I thought about what animal was always known to eat peanuts – an elephant of course! I sat down one afternoon and created the text to the entire book based upon the multiple times that I had explained to babysitters what an allergic reaction might look like.

Since I’m no artist, I asked a then-middle school neighbor, Maggie Nichols, if she could draw some pictures to go with each of the pages in the book. We put all this together in a spiral bound book to send with Morgan to school. The kids loved the book, as did the teacher. In fact, the preschool assistant told me that she learned a lot about peanut allergies from reading the book to the children!

My daughter is 5 years older than Morgan, and was in 3rd grade when Morgan started preschool. Her grade school was having an art fair, and the librarian asked me if I’d be willing to do a book signing for the event. I jumped at the chance to showcase “Allie.” To my surprise, our local newspaper wrote an article about my book signing, complete with a picture of the book cover. It looks a little different than now!

That newspaper article ended up being picked up by two dozen newspapers across the USA and Canada. I began getting calls from people wanting to purchase the book. They also wanted to talk about peanut allergies and how was I managing day to day? It opened up our world to help others. In 1999, the Internet wasn’t the knowledge base that it is today. We had felt very isolated trying the manage food allergies. No one in our community knew what we were talking about when we shared that our son had life threatening food allergies!

Our initial printing of 300 spiral bound “Allie” books sold out! We tried to get a publisher to print the next printing to no avail. No one was interested in a first time author. Nor were they interested in backing such a niche market. So, my husband and I funded the publishing and printing of the book.

We decided to start AllergicChild.com as a vehicle to sell the book, and to share our experience of living with food allergies. AllergicChild.com came into existence in January of 2000. As they say, “What a long, strange trip it’s been”!!

Since then, we’ve updated the pictures of the book with the same illustrator, Maggie Nichols, who grew up and grew into quite an artist! We’ve sold thousands of books through three editions to date.

“Allie” is now available in Kindle format too – just to keep up with the times. As for me, I still prefer “Allie” in its book form. There’s something special about reading a book to a child sitting in your lap. And reading a book about managing peanut allergies is even better!

Our School District’s Food Allergy Task Force wanted to find out what several allergists thought about managing food allergies at school. I sent these three allergists several questions:

Daniel F. Soteres, MD MPH is a Board-Certified allergy/immunology physician with offices in Colorado Springs and Pueblo. He has been in private practice at Asthma and Allergy Associates and Research Center since 2005.

Todd Mahr, MD, is a Board Certified director of pediatric allergy/immunology at Gundersen LutheranMedical Center in La Crosse, Wisconsin.

Bonnie B. Baswell, MD, FACAAI is a Board Certified Allergy & Immunology physician in Colorado Springs. She has been in Colorado Springs since 1984 and in practice at Colorado Springs Allergy & Asthma Clinic.

Each allergist was asked the same questions, and their responses are copied exactly as they responded. The hope was that we would be able to better manage some of the nuances of food allergies in the school classroom.

When you  are asked to write a letter outlining school accommodations for a severely food allergic child, do you always suggest an allergen-free classroom(s) for the child? Or does this depend upon age or previous allergic reactions of the child?

Dr Soteres: No, in general, I do not suggest and allergen-free classroom.  However, I do make exceptions depending on the history and testing information.  Multiple factors contribute to the decision.  There are objective criteria like skin test and blood test results and subjective issues like the history of reactions and their severity, student and parent anxiety, as well as the school’s (administration and teacher’s)  responses to these issues.

Dr Mahr: Personally for me, it depends on the age of the child. As they get into 4th grade or older, I try and include the child in the recommendation as they often do not like to be singled out. However, safety is always first. We try and recommend no food in the classroom.

Dr Baswell: I would recommend an allergen free classroom for peanuts and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut, this would have to be addressed on an individual basis.

As an allergist, if you suggest an allergen-free zone in a classroom, are you also concerned about foods containing an ingredient label stating “may contain…” being in the classroom? Or are you only concerned about products that actually include the child’s allergen? 

Dr Soteres: This is variable.  A few kids are so sensitized to their allergens that the “may contain.” label may be a threat.  For most, this is not a threat.

Dr Mahr:   We try and concentrate mostly on the labeled allergens, and this is difficult as with the labeling act, so many foods have had the “processed in..” it is hard for schools to operate in this gray zone. So with that, we usually have them acknowledge the labels.

Dr Baswell: I would recommend an allergen free classroom for peanut and nuts from preschool   until end of elementary school. This would include preventing foods that are labeled “may contain” from entering the classroom. If the food is something other than a nut this would have to be addressed on an individual basis.

In a school setting, would you be concerned about a peanut allergic child touching a food that had a label stating “may contain peanuts”? 

Dr Soteres: In general ,“no”.  Of course there are exceptions.

Dr Mahr: Age dependent again, but indeed the younger the child, the greater the risk of that contact getting into a mucous membrane (mouth or eye).

Dr Baswell: Yes, I would be concerned about contact reactions even if it was the ” may contain” labeling.

In the school environment, is there an age or a level of ‘milder allergy’ where you feel comfortable with a patient of yours being in a classroom with their allergen being eaten or being used in an art project or science experiment? 

Dr Soteres: As kids get older I expect them to be less messy with their foods and kids with food allergies become more savvy and better self-advocates. The art projects and science experiments make me a little more concerned.  In the past year there have been some nice studies that show some younger kids with allergy to say milk or egg seem to have a better chance of outgrowing their allergens if they tolerate the allergen in baked products AND continue to consume those products.

Dr Mahr: Art projects generally not until middle school, but even then I prefer no food allergen in an art project, even at that age, but again we try and not have food in the classroom.

Dr Baswell: I do have patients with milder food allergies that are manifested only by eczema on ingestion that I do not feel are at risk in a regular classroom. I would not want them to have contact with the offending food such as peanut butter in a science or art project so I would exempt them from this.

If a parent tells you that their child has had inhalant reactions to an allergen, is there any way for you to test for this level of an allergic reaction? For example, does a higher IgE to an allergen signify a higher likelihood of an inhalant reaction? 

Dr Soteres: There are not good studies or any test to really back up the claim that a child has had an inhalant reaction or that they are at risk for one.  We try to trust the parents’ judgment on this.  When the lab tests are high, then it supports the history as well.

Dr Mahr: Unfortunately IgE level does not correlate with sensitivity.

Dr Baswell: In general, this is rare and the usual cases are of reactions to aerosolized fish or shellfish at home or in a restaurant. I would expect their specific IgE to be significantly high. I   don’t do bronchial challenges for foods but there is some research on this. I would rely on their history of inhalant reactions and if this exists, their individualized health care plans would need to address this to prevent accidental exposures and to provide immediate treatment with EpiPens .

What have you suggested for school accommodations for your patients with reported inhalant reactions?   

Dr Soteres: We have a few situations where we have suggested an allergen free classroom.  My concern is that this can lead to a false sense of security. The main accommodation is to avoid contact and be prepared for a reaction when/if it occurs.

Dr Mahr: I think this is an area where a more personal directive is needed, rather than a global policy, as they are all so unique.

Dr Baswell: Avoidance!

Thank you to these three doctors who took their time for our Task Force. After extensive discussion about the responses, the Task Force decided that every child with food allergies needs to be looked at individually for the accommodations necessary for the child to enjoy equal access to the curriculum. It was certainly helpful to be aided by the medical standpoint however!

Wouldn’t it be amazing if your child’s school removed all food from the classroom? Imagine what that would be like for those students with food allergies! You wouldn’t have to worry about a safe snack box; you wouldn’t have to worry about snacks at all! No birthday celebrations of cupcakes, no holiday celebrations of buffets of sweets, cookies and candies – no food at all!

There was a time, when my son was in elementary school, that such a thought was a pipe dream. Yet, there were other parents even then – 10 years ago – who thought like I did. Why is there so much food in school these days? When I was in school (back when the dinosaurs roamed, as my kids remind me), we ate at lunch time in the cafeteria. That was the only time food was allowed. Now, children get morning snacks in kindergarten. And they are only at school for 2 1/2 hours! How hungry can a child get in that amount of time? In my son’s high school, students can eat anything, anywhere, anytime. And they do! They eat and eat and eat. And sadly, most of the time, they don’t clean up after themselves, which causes even more issues for students with food allergies to have to deal with the mess that’s left over.

In 2006, as part of federal and state initiatives, our school district formed a wellness committee that looked at how much food is offered in school. We also looked at what kind of food was offered. Many of the teachers who were on the committee were blind to the fact that they gave candy as a reward for good behavior. Additionally, they used M&M’s or Skittles for counting and grouping in math. Food was used in science to “examine the chocolate chip cookie.” In art students would draw a box of Captain Crunch and then eat it. It became apparent to me why we have such an issue with obesity in this country! Food – and mainly unhealthy food – was being offered to my kids every day at school.

Getting food out of the classroom will assist with not only obesity, but also with the many medical conditions that students manage. A child with diabetes has to monitor their carbohydrate intake, and doesn’t need the constant barrage of candy that many teachers use to reward good behavior. Parents of children with ADHD, Crohn’s, and autism also wanted to have food removed from lessons. Additionally, parents made choices of their children being a vegan or vegetarian, and I found parents of these children to be of a similar mind to mine. Get food out of the classroom!

There are schools that have implemented “No food” rules. Here’s a short list of schools/school districts that have their policies listed on their websites.

Chatham, NJ school district

Guilford, CT public schools

Madison, CT public schools:   Go to Section 5120.3.4 called “Managing Food Allergies”. Look for #14 in the School Responsibilities.

Pottsgrove School District, Pottstown, PA

Howard County, MD public schools: See page 2 of the School’s responsibilities

Great Neck, NY public schools

Robert C. Hill Elementary School, Romeoville, IL

I’m sure there are more out there, but these are the school districts that have it in writing on their website.

I’ve been beating this “No Food in the Classroom” drum for 10 years now. This past Halloween, our school district had two elementary school students, at two different schools, go into anaphylaxis during Halloween parties. Thankfully, both students had EpiPens at school which were administered and they survived. Both incidents involved snacks being brought into the classroom by another well-meaning parent for the party. One snack had “may contain peanuts” written very small – and sadly everyone missed that statement on the label. The other snack was homemade cupcakes and included tiny crumbles of Reeses peanut butter cups on top of the frosting. That mother was supposed to bring in pretzels and thought she was doing a good thing to make homemade cupcakes.

After these two frightening incidents, our school district is progressing toward food free party celebrations. The district has been given the grace of a warning. I really hope they heed the warning and remove food from classroom parties, at the very least. I understand that there are those students who medically need to have snacks during the day and that can certainly be managed on an individual basis. My hope is that one day, schools will move back toward when the dinosaurs were roaming, and all students will eat in the cafeteria ONLY!

Many state legislatures are currently hearing testimony about “stock epi” bills, which will benefit school children with diagnosed food allergies, and those who haven’t yet been diagnosed. Several states, including Virginia, California, Georgia, Illinois, Kansas, Missouri, Nebraska, and New York, already have stock epinephrine laws in place.

Colorado HB 13-1171, concerning the use of auto-injectors in emergency situations in school settings, has recently been passed by the House Public Health Care & Human Services Committee  by a vote of 11-2. We have a long way to go to get it through the House and then through the Senate before the legislative year ends in May 2013, but it is a good start!

More than two dozen states have either introduced legislation or are very close to doing so this year regarding stock epinephrine in schools. Some of the legislation allows for voluntary compliance, while others are mandating stock epinephrine in every school in the state.

What is stock epinephrine? It allows a school (generally defined as K-12, public and private) to have an epinephrine device (either EpiPen or the new Auvi-Q) that is non-student-specific. Stock epinephrine can be used in anaphylactic emergencies at schools for students who do not have epinephrine auto-injectors on campus. A student may have a diagnosed food allergy, or may not.

What are the benefits of this legislation? There have been at least two deaths in the last 18 months where a child had a severe allergic reaction at school and did not have epinephrine prescribed for them. If the school had a stock epinephrine device, these children could have received a dose while 911 was being called. The hope is that a school nurse, or a nurse’s designee, would be able to administer the epinephrine after noting the allergic reaction. In other words, lives would be saved!

Most doctors and allergists that I know are in favor of this legislation, as is the National Association of School Nurses.

What are the potential issues with the legislation? For those states where school nurses are handling thousands of students across several campuses, there are designees  assigned under the nurse’s  license to carry out doctor orders. Therefore, you could have an issue of a non-medically trained school secretary attempting to determine whether a child’s stomach ache is from the flu or the beginning of an allergic reaction. While epinephrine shouldn’t cause any harm to most people, giving the shot unnecessarily certainly isn’t what any school district wants to happen because of potential liability.

The other issue is the cost of the epinephrine devices that generally expire after one year. Most schools are woefully underfunded and spending $250 per 2-pack for an epinephrine auto-injector for every school every year adds up quickly. The expense is the biggest issue I’ve been hearing about in my school district that overall supports the legislation.

The last issue that I heard was brought up by a Colorado parent of two children with food allergies. She was concerned that cash-strapped parents may assume that if this legislation passes in our state that the child’s school will always have an extra epinephrine auto-injector on hand. Therefore, parents may not spend the money to send in an extra EpiPen or Auvi-Q to school with their child, only to find out that the school doesn’t have the money either!

I think a voluntary stock epinephrine law is preferable to a mandatory law because of the current fiscal environment. That will also allow individual school districts and schools to determine what is right for them. Check out your state legislature to see where you can help – testify, send emails, and get involved with this legislation!

We have one, and it’s the greatest group of advocates our school district has ever had to increase education and awareness of food allergies, and to keep children with life-threatening food allergies safe at school.

Life Before the Task Force

Before our task force was created, each parent of a child with food allergies had to train the teacher and school administrators about food allergies and what accommodations would be necessary to keep their individual child safe. In a district of over 23,000 students, we had almost 300 students with food allergies in 2007 when the Task Force was created. Today, in 2013, there are over 600 students with food allergies in our school district. The number continues to increase every year.

Each school was trying to develop its own set of best practices, yet there was no systematic way to share information about successes and challenges from one school in the district to another. Each time a new student with food allergies showed up at a school, there was another reinvention of the wheel.

How the Task Force Came into Existence

Some parents of children with food allergies became frustrated and sent letters and e-mails to the superintendent and school board, asking that a standard set of guidelines be developed to assist every school in our district to appropriately manage food allergies. Our school district, Academy District 20 in Colorado Springs, Colorado, formed a Food Allergy Task Force in response to these concerns. The school district’s superintendent supported and encouraged the group’s work.

Who’s Part of the Task Force?

Founding members included three principals (one from each level), five parents, a school nurse, the food services director, the district Section 504 coordinator, the director for legal relations and the chief operating officer. It was important to include all of these stakeholders to ensure that information was gathered to create complete guidelines for a child in the classroom, on the school bus and in the cafeteria – to name just a few. Since the group formed, others have joined, including a local physician specializing in treating children with severe allergies and asthma, three parents and two more school nurses. Members come and go depending upon new topics that come up in our school district and/or state. More and more school nurses attend the meetings over the years, since they continue to be faced with managing the treatment plans of more and more children with food allergies!

What the Task Force Does

Our Task Force submitted recommendations to the superintendent for policy revisions and guidelines for protecting children with severe allergies. Those guidelines were implemented by all schools in the district the following year. (You can review these guidelines here.)

This implementation effort involved collaboration and cooperation between school administrators and school nurses. Nurses train all district staff (including bus drivers, cafeteria staff, teachers, etc) on how to recognize symptoms of anaphylaxis and how to administer an epinephrine autoinjector.

The Task Force continues to meet approximately two to three times a year to evaluate how things are going in our schools and to provide support to members. The success of our Task Force in creating guidelines was used as a foundation for The Colorado Schoolchildren’s Asthma and Anaphylaxis Act of 2009. This act requires the Colorado State Board of Education to promulgate rules for the management of food allergies and anaphylaxis among students enrolled in public and charter schools in the state.

The Task Force hosted a Food Allergy Summit promoting awareness of life-threatening allergies and asthma in both 2010 and again in 2012. The keynote speaker in 2010 was a physician in internal medicine, allergy and immunology, who is also an Anaphylaxis Community Expert (ACE). A panel discussion followed his remarks, providing perspectives from two students, one elementary and one high school, a principal and two teachers, a school nurse, a school attorney, the food services director, and a parent on how to keep severely allergic children safe in school.

More than 120 parents and students attended and the task force is committed to continuing efforts to raise awareness about the need to protect children with severe, life-threatening allergies in our schools.

In 2012, the Food Allergy Summit included information about the psychological impacts of food allergies and helped students with food allergies learn how to self-advocate with a question and answer session for them to practice with difficult situations presented for them to resolve. Students got to meet other kids “just like me” and parents were able to meet with other families facing similar challenges and successes.

Our school district was the first to create a Food Allergy Task Force. Since then, there have been at least two other districts in Colorado that have also created one. The result: more children with life-threatening food allergies are safe at school! Will your district be next?

Recent court settlements have determined that a child or student’s food allergy is a disability. While I would have cringed several years ago to think that my son has a disability, I now see this as welcome news!

Here are the details of the first lawsuit: A lawsuit was filed by Shannon Knudson against Tiger Tots Community Care Center after they refused to accept her daughter with tree nut allergies in to their care because they feared liability. Ms. Knudson claimed that the daycare was discriminating against her daughter and should be forced to accommodate her. The ruling won on appeal, overturning a lower court’s opinion which said that the daycare had the right to refuse a child whose care would be extraordinarily burdensome. The Iowa appeals court disagreed. They said the child’s allergy is a disability and must be accommodated under the American Disabilities Act. More information about this ruling can be found here.

The other settlement was between the Department of Justice and Lesley University, a private non-profit institution of approximately 8,000 students in Cambridge, Massachusetts. The Lesley settlement stemmed from a student complaint in October 2009, which alleged that the university violated ADA (American with Disabilities Act) by neither addressing the needs of students with food allergies nor ensuring them an equivalent dining experience. Under the settlement terms, Lesley – and presumably, other institutions that want to stay in line with ADA – must do more than simply provide gluten- and allergen-free options in its cafeterias. It must also develop individualized meal plans for students with food allergies and allow them to preorder meals; provide a dedicated space in its main dining hall to store and prepare foods to avoid cross-contamination; display notices concerning food allergies and identify foods that contain specific allergens; train food service and staff about food allergies; and try to retain vendors that offer food without allergens. More information about this settlement can be found here.

Both of these institutions – Tiger Tots Community Care Center and  Lesley University – are NOT K-12 schools required to provide FAPE – Free Appropriate Public Education. Therefore, these rulings have really changed the landscape for day care centers and colleges. The fact that Lesley University is a private institution means that the Department of Justice oversees them, rather than the Office of Civil Rights. However, the ADA rules still apply. The rulings have determined that in these cases, food allergies are a disability. Why is that a good thing for your child?

First let me say that when I look at my son, Morgan, I don’t see a disabled child. I see my wonderful son, who has a hidden disability. The question that has to be answered in regard to a disability is: Does a child’s impairment substantially limit one or more major life activities defined by the ADA Amendments Act of 2008 ? An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. And for school and college, that definition of a ‘disability’ works for us because my son does need accommodations in order to remain safe and to have equal access to the curriculum.

Gone are the days when a child with food allergies is seen as an imposition in a school or day care. It’s not up to parents to beg and plead for a safe classroom, hoping that some kind-hearted administrator will ‘get it.’ We have the law on our side, and it comes in the form of allowing the classification of our children’s life threatening food allergies as a ‘disability.’

I recently attended a presentation by a Senior Attorney for the Office of Civil Rights (OCR) in Denver, about Section 504, Title II and Students with Disabilities in Public Schools. This presentation was made to the MOSAIC support group in Denver, Colorado on  May 7, 2012 in regard to 504 Plans in the K-12 school setting. Information in this blog post should not be used to argue a specific issue that you may have with a school, but is provided here for informational purposes only.

The attorney started the talk with 3 rules:

1.            There are rules about this “stuff”
2.            The rules are your friends
3.            Follow the rules

The presentation covered the following two areas: Section 504 of the Rehabilitation Act that was created in 1973, and Title II of the Americans with Disabilities Act (ADA) created in 1990 which are read together. However Section 504 pertains to those institutions receiving Federal funds, while Title II pertains to all public entities.

OCR is part of the US Department of Education and enforces civil rights laws prohibiting discrimination in education programs on the basis of: race, color, national origin, sex, disability, and age. Religion is not a category. OCR is headquartered in Washington, DC and includes 12 regional offices across the US including the Denver office where the presenting attorney works out of.

Which schools are covered by 504 and Title II? Section 504 prohibits discrimination on the basis of disability by schools that receive Federal financial assistance; while Title II prohibits discrimination against people with disabilities by public schools (including public vocational schools and public charter schools).

OCR enforces compliance to Section 504, but rewards no damages. Section 504 is a civil rights statute and there is no funding for 504 Students. OCR has a database of recipients (schools) of federal funds.

Individuals with Disabilities Education Act (IDEA) is different. Many students are served under another federal law known as IDEA. OCR doesn’t enforce this. There are 13 specific disabilities covered under IDEA and it is a funding statute and not a civil rights statute. IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services.

What do school districts need to know about 504 and Title II?

Every year, each school district must: Identify and locate students with disabilities in the district who are not receiving a public education and notify parents/guardians of children with disabilities of the district’s duties under Section 504. Location is done from parents, teachers, doctors, Child Find, etc. A school district’s Special Education Coordinator is responsible for IDEA enforcement. A school district’s 504 Coordinator is responsible for 504 enforcement. A school district must have 1) a non discrimination statement, 2) a Section 504 coordinator and 3) a grievance procedure. Who the District 504 coordinator is must be published and that person must be adequately trained in 504 procedures.

A school district must provide a Free Appropriate Public Education (FAPE) to each qualified student with a disability in the school district’s jurisdiction regardless of the nature or severity of the disability.

What does Free and Appropriate mean?

Free means free!  No charging for costs related to disability, but school/district may charge usual fees paid by all students.

Appropriate means regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met. It is equal opportunity for all students, not equal results. It gives students the opportunity to achieve.

Identification and Evaluation of Students

A school district has the unilateral responsibility to get/obtain information on the student’s disability. A disability does not equal diagnosis. A disability is a substantial impairment of a major life function. There is no cookie cutter approach. Two children both having food allergies and a 504 plan should not have the exact accommodations in a 504 Plan.

The school district must individually evaluate any child who, because of a disability, needs or is believed to need special education or related services.

When must the evaluation occur? Before the child’s initial placement in a regular or special education program. The evaluation is intended to answer two questions: 1) Does the child have a disability under Section 504/Title II? If so 2) What are the child’s individual education needs?

Regarding Question 1 above: does the student have a physical or mental impairment which substantially limits one or more major life activities? The ADA Amendments Act of 2008 no longer focuses on the disability but on what services a person needs. The 2008 amendments expanded the list of major life activities. Some of these are (but are not limited to):

Caring for oneself
Performing manual tasks
Walking
Seeing
Hearing
Speaking
Breathing
Learning
Working
Eating
Sleeping
Standing
Lifting
Bending
Reading
Concentrating
Thinking Communicating

Major life activities also include operation of “major bodily functions” such as:

Functions of the immune system
Normal cell growth
Digestive
Bowel functions
Bladder
Brain
Circulatory
Endocrine
Reproductive
Neurological
Respiratory

What is an impairment? Any physiological condition that affects a bodily system, or any mental or psychological disorder. A 504 Plan doesn’t have to have anything to do with a learning disability if a child has “just” the disability of food allergies. The question is: Does the student’s impairment substantially limit one or more major life activities? A temporary impairment like a broken arm is not a disability. An episodic impairment like diabetes or food allergies is  a disability because they substantially limit a major life activity when they are in an active phase. Conditions lasting more than 6 months need to be carefully considered.

Substantial Limitation does not mean severe restriction or inability in performing major life activity. Look to condition, manner and duration. Must consider the individual without mitigating measures such as an EpiPen or insulin to determine disability. The one exception to this is eyeglasses. There is no vision disability if eyeglasses correct the problem.

IDEA vs. Section 504/Title II

IDEA defines disability differently. To be protected under IDEA, a child must: have a particular disability listed in IDEA and need special education and related services. Under Section 504, a qualified student with a disability is protected regardless of whether the student needs special education.

Regarding Question #2 above: What are the child’s individual education needs?

Needs are identified by looking to a variety of evaluation sources, including: aptitude and achievement tests, teacher recommendations, physical condition, social or cultural background and adaptive behavior. Placement of the child must be by a group of knowledgeable persons knowledgeable of the evaluation data, knowledgeable about the child and knowledgeable about the placement options.

The group should answer the question: what is the child’s need related to the disability? (not to the diagnosis). This group should include the 504 coordinator, parent(s), teacher, school psychologist, etc. There are no unilateral decisions in this area. If a parent disagrees with the group/team’s placement then the parent can go to due process. You don’t have to have an attorney for due process (nor does the school district). Due process has to do with the content of the 504. It is a procedural issue if the school is not following the 504 Plan. It is best to use a school district’s grievance procedure first. A parent has 180 days after the last act of discrimination to file with the OCR.

A 504 Plan doesn’t have to even be written, but it is strongly suggested to do so. If a child has no 504 Plan and “just” a Health Care Plan that outlines the accommodations, a parent should make sure to receive procedural safeguards (which outline what to do in case the plan isn’t followed). If there’s a need for accommodations, then you have to have a plan and it’s best to have it written. Call it whatever you like, (as the attorney said, you can call it Fred (!) or a Health Care Plan or a 504 Plan) and include whatever is agreed upon by the group/team. Does every child with food allergies need a 504 Plan? It depends on if the disability limits a major life activity.

Placement is defined as appropriate educational services designed to meet the student’s individual needs. The Team carefully considers evaluation information from a variety of sources and all significant factors affecting the student’s ability to receive a FAPE. The Team documents all the information considered and does not rely on assumptions regarding persons with disabilities or classes of such persons. It’s about the individual!  Food allergic students should be integrated with other students.

Also discussed was the Court Case: U.S. Education Department Reaches Agreement with Memphis City Schools on Aids, Services for Students with Disabilities OCR does investigate complaints but it can also ensure compliance by completing a review which is what they did in Memphis. They screened all health care plan students to see if they were offered 504 Plans for food allergies. You might want to bring this court case to the attention of your school district.

The 504 Plan should be re-evaluated at least every 3 years or before a significant change in placement.

FAPE – Common Compliance Concerns

1)            Making decisions unilaterally instead of by the Team

2)            Making decisions that are not based on evaluation information or child’s needs

3)            Failing to implement IEP or 504 Plan

4)            Not affording parents procedural safeguards (a system regarding identification, evaluation and educational placement). Procedural safeguards include: notice, records review by parent/guardian, due process-impartial hearing with participation by parent and counsel (if desired) and a review procedure.

The term ‘least restrictive environment’ was discussed in the question/answer session. There is a careful balance of confidentiality between the school’s responsibility to implement the plan and the child’s need for privacy. The child’s disability may be announced to keep the child safe in some cases.

Reasonable accommodations is a concept for post-secondary education and employment places. Section 504 requires that the individual education needs of students with disabilities are met as adequately as the needs of students without disabilities. See Question 14 here.

FAPE is regular or special education and related aids and services designed to meet a student’s individual needs as adequately as the needs of non-disabled persons are met.

For children with food allergies going to college, a transition plan in the last two years of high school is suggested.

There are many schools and school districts that have guidelines or policies for severely allergic children. Some states have mandated these policies; other states have provided guidelines for schools to follow. If you’re interested in this type of legislation, please click here. There is a Federal law – the Americans with Disabilities Act – that can provide coverage for your child with life threatening food allergies regardless of where you live in the USA. Every entity that receives public funding (therefore generally not private schools) must adhere to the ADA.

The Asthma and Allergy Foundation of America states,  “The ADA borrows from Section 504 of the Rehabilitation Act of 1973. Section 504 prohibits discrimination on the basis of disability in employment and education in agencies, programs and services that receive federal money. The ADA extends many of the rights and duties of Section 504 to public accommodations such as restaurants, hotels, theaters, stores, doctors’ offices, museums, private schools and child care programs. They must be readily accessible to and usable by individuals with disabilities. No one can be excluded or denied services just because he/she is disabled or based on ignorance, attitudes or stereotypes.”

The Section 504 Plan in an educational setting stipulates the accommodations your child with food allergies will need in order to safely attend school and participate in activities. This plan will generally be created with a group of administrators and you, the parents, in attendance. Many school districts have 504 administrators who oversee such plans. The school principal, school counselor, teacher and parents are also frequently participants.

This plan is legally binding. Beyond that, having a written plan of accommodations ensures that there is no confusion as to the exact steps that need to be taken to keep your child safe and included in as many school activities as possible.

Some schools will be apprehensive to create a 504 Plan for a food allergic child and will want to only agree to a Health Care Plan. Our experience was that our son was too often asked to not participate in school activities, whether it was in the classroom or a field trip, because of his food allergies when he started elementary school. We wanted to ensure his inclusion in all safe activities, or for the teacher to find an adequate substitute for the entire class. A 504 Plan ensures that a child with a disability is included in the activities as much as possible, whereas a Health Care Plan didn’t cover the exclusion issue. We therefore asked for both a 504 Plan and a Health Care Plan.

You will want to have the 504 Plan in place BEFORE the school year starts. Ensure that every teacher who will teach your child has read this plan, and is aware of the specific accommodations.

We rewrite the 504 Plan on an annual basis in the spring. This allows next year’s teacher(s) to be brought into the meeting. We review what went well during the school year, what problems we had and what needs to be changed in the 504 Plan for the upcoming school year. Our son always participates in these meetings.

The Americans with Disabilities Act was amended in 2008 to include eating as a major life activity. Therefore, obtaining a 504 Plan for your food allergic child should no longer be as difficult to obtain. You can read the new amendment to this Act here.

Does every child with food allergies need a 504 Plan?    No, not in my opinion.

In our school district of 23,000+ students, there are approximately 600 with life threatening food allergies (indicated by having a prescription for an EpiPen). Only 10 of these students have a 504 Plan. Why is that? Our school district has a policy and procedures for dealing with students with severe food allergies. Additionally, the district has guidelines for the parents, student, teacher, school nurse, administration, transportation and cafeteria to follow. Most students will have all their needs met with these layers of protection. However, for students who have a history of severe reactions and/or contact and inhalant reactions, and/or have severe peanut or tree nut allergies (indicating more likely to experience anaphylaxis), in addition to eczema and/or asthma – an added layer of awareness is necessary. Those are the students who have 504 Plans.

I recognize that our school district is certainly not the “norm.” If your school district does not have any guidelines, policy or procedures for students with food allergies, then you will likely not only want, but need a 504 Plan to ensure your child is included in all activities with the highest level of safety.

In Morgan’s Corner below, Morgan explains his experience with 504 Plan specifics. We feel it is very important to include him in all 504 discussions so that he knows the ‘safe adults’ in the school building. He also knows what is expected to keep him safe, and that has been extremely important in situations where the 504 Plan was not followed – accidentally.

We have never had to involve a lawyer to get our school to provide a 504 Plan. Our allergist listed out what accommodations would be necessary for Morgan to attend school in a letter, and the school district agreed that a 504 Plan was necessary. When there has been an issue about the plan not being followed, we’ve had an immediate meeting with the Principal to discuss what actions should have been taken. The plan has been updated or reiterated, and thankfully no serious allergic reactions have been the result of the error. The 504 Plan has allowed us to separate out the emergency actions, which are iterated in the Health Care Plan – with the accommodations which are listed in the 504 Plan.

We’ve found benefit in having both, and Morgan continues to have both in high school.

Morgan’s Corner: The Importance and ‘Evolution’ of a 504 Plan and Meetings

As school starts, accommodations start entering our minds. Dealing with school and all the food related issues can seem complicated and challenging, but it’s not!

Section 504 of the American Disabilities Act allows people with a disability that can impend on a learning environment (in our case, food allergies) have a plan for accommodations- a ‘504 Plan’. It is not the same as a Health Care Plan – I do have both.

I have had my 504 Plan since Kindergarten. It has helped me stay safe in school- from having staff and kids wash their hands to having a peanut-free zone during lunch. My 504 Plan has helped me stay safe and healthy throughout all of my school years.

A 504 Plan allows you (or your child) to have accommodations in school. This ranges from everything- I’ve had no pet policies, training of the staff on EpiPens, and no-nut zones at lunch and in my classroom(s). Of course, I’ve had help along the way to create guidelines and keep me safe at school.

Over the years, my 504 meetings have changed dramatically. A 504 Meeting is an annual meeting that occurs with your counselor or other staff member (such as your principal), yourself and/or your child. It is required by Section 504, as every year you can revise accommodations placed in your 504 Plan. I’ve always participated in my 504 Meetings, ever since Kindergarten. Back then, I would sit there and listen, and my mom primarily led the meetings.

As I grew older, I started to participate more- adding comments, responding to questions, etc. In 8th grade, I led my first 504 Meeting.

In my case, I have two ‘504 Meetings’- one at the beginning and end of the school year. At the end of the year, I go over (with my mom) the accommodations laid out in my 504 plan with my counselor. We take out some policies, revise some, sometimes even add more- it all depends on what was needed in the past school year and our vision for the future. The one at the beginning of the school year is the more ‘important’ one- I meet with my teachers for the next year, train them on the EpiPen, and discuss policies of food in the classroom.

In 9th grade, all but one of my teachers applied a ‘no-food’ policy- which worked out just fine. Certainly, there were incidents where people brought in food, but for the most part, it didn’t happen. Most of the food brought in anyways was safe for me to be around. Even in the classroom where food was allowed (but not my allergens) worked out fine. Most of my classmates are very aware, so it usually always works out fine.

Over the years, my 504 Plan has been a very important part of my school life. It allowed accommodations to make me feel safe in school. Over the years, it has allowed my self-advocacy to arise, yet still assist me in food-related issues, especially in high school.

Morgan