FAACT's Roundtable

Ep. 293: Back to School Food Allergy FAQ's

• Season 5 • Episode 293

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New school year. New teacher. Same big questions. How do you request accommodations? What are your child's rights? And what should you do if something doesn't go as planned? In this episode, FAACT General Counsel and Vice President of Civil Rights Advocacy, Amelia Smith, J.D., answers five of the most frequently asked questions from food allergy families, helping you navigate school accommodations with greater confidence and peace of mind.

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Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions,

each episode will explore a specific topic, leaving you with the FAACTS to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice.

Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone, I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast.

I am a food allergy parent and advocate and the founder of the Grateful Foodie Blog. And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, we would like to say thank you to Genentech for their kind and generous sponsorship of FAACT's Roundtable Podcast.

Welcome back Amelia to FAACT's Roundtable podcast. I'm absolutely excited about today's podcast because you are going to cover a lot of the questions that everyone's always asking and so we're going to get some great information here.

So welcome.

Amelia: Thanks Caroline for having me back.

Caroline: Before we dive into today's FAQs, we'd love for our listeners to get to know you better because we might have new people listening today.

You bring a very unique perspective because you're not only FAACT's General Counsel, but you're also a food allergy parent. Can you share your family's journey and what led you to this work?

Amelia: Certainly.

So my second child was diagnosed with food allergies around the age of 6 months and eventually it was peanut tree nut, shellfish,

egg,

sweet potatoes, strawberries and milk. So and then outgrew the sweet potatoes, strawberries and milk. But he was still in day school at that time and even though it was a church operated private daycare or day school,

we still ended up having to get accommodations because he had reactions and several severe reactions very close together that required treatment. And so I learned a lot about disability accommodations as they apply to food allergies through that experience.

In law school I concentrated on employment discrimination law,

which also of course included disability discrimination and disability protections as they apply in employment. But once my child came along and we had a reaction at the day school, several back to back reactions, all within a very short period of time, I had to learn my learn on my own to advocate and fight for those accommodations.

But I also around that time became very active in the food allergy community. That's about the time I believe we met actually all those years ago at that point, you know, in the late 2000s, early 2000s.

Most of the organizations, or really all of the organizations at that time were not very pro 504.

And advocacy was not the type of advocacy that we talk about when we talk about disability advocacy. It was legislative advocacy. They were lobbying.

And so I realized at that time what a great need there was in our community for more boots on the ground in this area and more assistance to our families.

Caroline: And here you are helping families year after year through FAACT, speaking and giving us good information.

So even though I'm sad you had to deal with all of this, I'm happy that you're here with us. Now let's jump right into our topic.

Every back to school season, I know you hear many of the same concerns from families. So let's explore those. What are the top two questions that come up again and again and then what do you want everyone to know?

Amelia: So some of the questions that I hear on repeat are, you know, what to do if the school says we don't do 504s for food allergies or your child's not qualified or eligible for a 504 because it doesn't negatively impact their education.

So that's one aspect of what we hear which know to briefly answer those questions, Section 504 prohibits exclusion or discrimination of individuals with disabilities by programs that receive federal funds.

The number one areas that we see that law utilized is in K-12 school settings.

So 504 is not like an IEP where it's more the educational impact. But then again it doesn't have to be educational for an iep, but that's a topic for a different day.

We just have to have one or more major life activity negatively impacted by your condition.

So it's to provide access and inclusion in this day to day setting. So in the classroom, in pe,

in art class, you know, all of those places where the students need access to the education or the programs or the meals or whatever it is taking place that the child needs to be included in at school.

It is the example of the sidewalk cutout for an elevator over stairs for someone that you know may be a wheelchair user. Reframe it and often explain to the schools through analogy like that.

Because there's still schools that don't understand, they're just not knowledgeable. And so that would be the other thing that I recommend to those parents that may run into this is, you know, really one you first need to educate yourself.

We have plenty of FAACT developed resources on our website that answer these questions, but also we can assist in linking you to other recognized experts, whether it be the Department of Education or AAAAI, you know, any of these other entities that might also have supporting documentation.

I think education is the key solving these problems in public education.

Caroline: Thank you for sharing those concerns because I think they're, again,

very common.

We all run up against those sometimes. And if we can just take a moment, and if you don't mind just briefly explaining what's the difference between a 504 plan and an IEP?

Amelia: To qualify for an IEP, you have to have one of 14 specific listed learning disabilities or disabilities that impact your ability to learn. Section 504 is that physical access or that inclusion, you know, physical inclusion in the environment or the activity.

You know, to break it down a little further,

IEPs are a product of Individuals with Disabilities Education Act. Section 504 is section 504 of the Rehabilitation act of 1973.

So they have different parameters, different objectives and different requirements. They're not interchangeable. And I think that's the important thing to know. But typically you're not going to see an IEP just for food allergies, because food allergies typically don't impact the student's ability to learn to the level necessary to qualify as an other health impairment.

Under IEPs, your student qualifies for an IEP due to a different disability.

504 accommodations can be included in the IEP. They don't have to. That's pretty much left to the discretion of the schools. A lot of them do combine them,

but you're typically not going to get an IEP for food allergies. That is where Section 504 really comes into play.

Caroline: Thank you for that definition.

Now, there's one resource that many families have heard of, but I don't know if they fully understand it.

I didn't actually know until you explained it to me. And that is the Office of Civil Rights or the OCR like you just mentioned. Can you explain what the OCR does exactly?

And then when should a family consider reaching out to them for help?

Amelia: The Office for Civil Rights is of course a division of the U.S. department of Education.

And it is tasked with ensuring that K12 schools and those educational entities that fall under the Department of Education's purview comply with section 504 and other federal anti discrimination laws.

Our Department of Education right now is in a weird state of flux.

And every OCR division, really,

even before the changes to the Department of Education, they were very different in what they did and how they handled cases within the guidelines and within their parameters. But you know, where you live in the country, it really made a difference in what you were getting from the OCR.

So I don't want people to be discouraged in reaching out for this help if they need it. I just want people to realize now that the OCR is less well staffed than it was years ago.

And we sometimes would say that they weren't as fast in investigating complaints even then as we would like for them to have been. But we appreciated having them, especially when we're facing the possibility of not having them.

But anyway, it is their job. They are tasked with making sure that these three entities that receive federal funds or federal funding comply with section 504. I want families to know that that is a recourse.

It is possible to file a complaint with the OCR to have them investigate the alleged discriminatory conduct at the school. They also can help assist in early dispute resolution, which is almost like a mediation between the school and the families.

But the OCR also of course has publications. There's a great one that they put out. It was a great little two pager on food allergies and how section 504 applies to food allergies.

And so that is, you know, when the resources, in addition to the fact resources, you know, that is a really good resource to use to support yourself with the school.

So those who are tasked with investigating these allegations and to ensure that the schools rectify what needs to be done, but they're not the end all be all. Whether you get a good result or a bad result from the OCR,

you still have other options.

There are federal suits. You know, you can hire private advocate to go in with you. But really, I think before we even discuss filing a complaint, we need to look and make sure that what we're asking for is what our child needs and that we have really considered other possibilities.

Because as I often say,

if you are there to get accommodations for your kindergartner or your first grader, you're going to be dealing with these people for 12 years and your child is going to be dealing with them.

And there's nothing inherently adversarial about the section 504 process.

Schools do not receive funding for section 504 use specifically like they do for IEPs under the IDEA. So there are some cases where we need to look to see if there are other possible solutions to the issue that we're trying to solve or the precautions that we're trying to take,

the outcome that we want. There may be other avenues to get there.

And I think that is the best way to go into these meetings is to try to be as collaborative as possible.

It's easier because it's easier on the student. The student is not going to be in a situation where they feel like they're being singled out or somehow being retaliated against because you're trying to enforce the rights, which of course, you know, there are retaliation claims that can be filed with the OCR if that occurs.

It's easier for the parents because they don't get labeled. The helicopter allergy parent who is trying to take away everything from everybody and doesn't want the kids to have any fun, which I know has been a complaint that we've heard for 20 years.

It's easier for the school because a good 504 plan is basically the owner's manual or the instruction manual on how to keep your child happy, engaged,

learning and safe at school.

And really that is the way that we should be looking at 504s, in my opinion.

Is there a tool,

yes, they're there to protect our students rights. And I don't want anybody to think that what I'm saying here is,

you know, some sort of Pollyanna vision of how this is going to work. It's not. We know there are issues and the OCR does have its place and advocates have their place.

And yes, even as an attorney, I can say attorneys have their place and,

you know, their federal lawsuits have their place.

But a lot of our issues are due to lack of education or just plain ignorance about what the law requires. Prejudice and preconceived notions about, you know, the horrible helicopter allergy parent.

Because we've gotten a bad rap for years when all we're trying to do is keep our child included and healthy, which is what the teachers are supposed to want too, in the schools.

And so I think that's the most important focus when we start talking about having problems is I think we need to recenter ourselves to why are we really here?

And that's why, you know, in meetings where we get pushback, often recommend that, you know, parents put a picture of their child in the middle of the table, or, you know, caregivers put a picture of their student in the middle of the table and say,

okay, this is what we're worried about.

We want to make sure that child is here and happy and healthy. Look at that sweet smile.

That's what teachers want. Nobody goes into education for the money.

Yes, they may stay there for the money. Not in my home state of Mississippi, necessarily. But in other states, teachers are paid better than they are here.

And they may become jaded over the years. But you know,

you don't go into education because you think you're going to get rich.

You go into it because you want to help inspire the next generation and protect them and teach them. And so, you know, before you jump right to the OCR, there are advocates FAACT does offer one on one contact to talk through what's going on and brainstorm possible solutions.

That is my favorite thing to do is the brainstorming and to think about, okay, how else can we accomplish the goal?

How else can we keep this child safe during whatever? Or they always use this for the crafts, whatever.

There are so many possibilities of how to do these things. You don't have to be the parent who insists on bounce paper towel and dial hand soap to wash a thousand children's hands every day.

The school industrial soap and the school industrial paper towels are going to be fine. The OCR has its place. They are tasked with enforcing section 504, but they're not the end all, be all.

And in a time where we don't know who actually is going to be enforcing section 504 tomorrow,

I think it's important to realize that that's not really first in the process of what you're going to do if things don't go 100% correctly or the way you feel they should.

There are always multiple ways to look at any situation and usually multiple ways to come up with a solution and multiple way to phrase things to try to change minds or increase understanding of what our students with food allergies really need that are very underutilized today in a society that is as litigious and contentious as ours is.

Caroline: I really appreciate you focusing us on going back to school,

trying to collaborate, work with the teachers, work with the school administrators.

I also just love your suggestion of having a photo of the student on the table because that's what makes things so real.

And I like how you're saying, okay, the OCR is there,

but that's not your first line.

Your school and those conversations are your first line and then the OCR is the next line. And I just really appreciate you being so clear about this path because it can be so overwhelming.

Again,

thank you.

I want to ask you about one of the things that we see a lot on social media and that is what I've seen so many times. And here's a statement.

If my child's school already has food allergy policies,

do we really need a 504 plan. Can you explain why having an individualized 504 plan is still so important even in schools with really strong allergy policies?

Amelia: A policy and a 504 plan? 1. Of course, they're not the same thing.

Great policies are great policies and I love schools that have great theology policies. But policies are general guidance documents or general rules of the road.

They're not geared towards the student that we are talking about in a 504 meeting necessarily. Each student has going to be individualized and are going to have individual needs.

You know, not every child with peanut allergy needs all of the same accommodations.

Even on our sample accommodations that we have on FAACT's website,

we make sure to include a statement that not all of these accommodations are going to be appropriate for every student with food allergies, nor should a parent request all of those.

That's how we sometimes get that label of the crazy helicopter allergy parent.

Because there are parents who go above and beyond and know the school should not have to do all the things that aren't necessary for that student.

The goal is to keep that student safely and actively and inclusively learning with their peers, their non allergic peers.

So I think it's important to have a 504 that is geared towards your students particular and individualized needs.

That said, if your school has a great food allergy policy and they are going to toe the line and they're going to follow that policy to a T, why would they have a problem attaching it to a document called 504 Plan?

See attached this policy will be fully followed. You know, something that simple that helps not only the parents feel comfortable, but also outsiders,

field trip chaperones,

class, parents who want to bring food in. Well, that's great.

A lot of them look at policies and don't understand them. And it's just another step to make sure the process is followed.

And having a 504 plan in place before something happens or goes wrong is a lot easier than scrambling to get a 504 plan in place.

You know, there is an evaluation process to get a 504 plan.

And so a simple 504 plan in the beginning may be all you need may be attaching the school food allergy policy.

But being able to come back to the table and say, okay, this didn't work, we need to change it is a lot easier than coming table after a reaction for the first time and saying I want this,

we need this.

Caroline: This is exactly what I learned from you, Amelia. And I saw it so many times with my student: when something funky happened once, we didn't even need to pull out the 504.

Just knowing it was there motivated everybody.

But I saw so many other parents in the school who didn't establish 504s. And then something happens, and the school's like, well, we don't have specific direction.

So now you have to try to get a meeting. And that takes time.

We all know that to get everyone's schedule together, it takes a lot of time. And I watched parents go through weeks trying to get something established.

And I always just appreciated you telling us, get that 504. You constantly reminded us,

if you don't need it, that's fine, but when you do need it, it's ready. And I've experienced that, and I vouch for this.

Again, thank you. I really appreciate you bringing that up.

That was a very hot, important tip.

Now, moving on,

let's discuss something that comes up a lot.

Parents sometimes worry about being seen as that parent when asking for accommodations.

So what do you say to those families who are hesitant to speak up because they don't want to be perceived as that difficult parent?

Amelia: Oh, that's a tricky one, Caroline, because there's so many facets to that one. So I'm going to try to remember all the points.

First of all, of course,

as a parent of a child with food allergies, I would much rather be perceived as being that parent than be the parent that everyone's consoling because they've lost their child.

And I think parents need to take a step back and look at that.

And I think every allergy parent I know would say, I'm going to protect my child.

So that concern,

I think, is one that we all have. I think there's, you know, there's something in our society about being difficult that especially for mothers that we really shy away from.

But all we're asking is for what our students are entitled to, what the law gives them. And as long as that's what we're asking for,

then we're not being difficult.

If we ask for only what our student needs,

then we're just being good parents or good caregivers or custodians. We're looking out for who we're supposed to be looking out for.

Caroline: Let me just interrupt for a sec. That is brilliant,

because I think that's the problem.

We forget we are doing what is right.

We are not asking for extra. We are just asking what is right and what is correct.

Amelia: Exactly. And,

you know, unfortunately,

that.

And that's One of the reasons I hate to say it when we talk, because it is such a stereotype and I just cringe when I say it.

But I think it's important to make that, you know, to recognize that we are sometimes perceived that way, but we shouldn't be as the crazy allergy,

helicopter parent or, you know, all of those horrible things that we've heard from 20 years, you know, that I've been called in my life. I'm just asking for what's right,

you know, not for something new. It's just what he's.

They've always been entitled to.

There's Nothing in the 504 process that is inherently antagonistic. If everybody at that meeting were to approach a 504 as that roadmap to keeping the child safe,

included and learning in the K12 setting,

there should never be a battle over that. It may be difficult to agree as to the best way to do it.

Yeah, that. That usually is where we see the problems. It's either, no, we're not going to give you a 504 plan,

or we can agree as to the best route to reach this particular outcome that, you know, we want to protect or preserve.

Whether that be included in projects. Science projects, especially with younger children, often still involve food items for what reason?

Shouldn't have to be that way, but it does. It's. It's a reality. I think it goes back to, you know, the collaborative approach that I try to encourage.

You know, if a school's gonna reject a proposed accommodation,

explain the why. You know, that's. I think that's one of your favorite Amelia Isms, as you call them, Caroline. But, you know, explain your why. Why do you want every student in your child's class to wash their hands before they come in the classroom in the morning?

In my case, it was an autistic child.

In my child's case, an autistic child who often put their hands and fingers in their mouths and they were sensitive enough that, you know, picking up trace protein from playing with a ball that another child had eaten with high egg content donuts that morning.

They went into anaphylaxis multiple times in a very short period of time.

You know, it was reasonable to say,

don't feed your, you know, don't let the other kids come in here eating donuts or, you know, make sure everybody washes their hands or wipes them off with a wipe before they come in and play with the ball.

It's a simple solution. But yes, you may get some pushback from that or for that, from that request to that request.

But if you explain the why, okay, well, you know, I think the eggs is transferring from the ball. So do we take the ball away?

There are other solutions.

We can't agree to do it this way. Maybe you have better ideas.

Turn it around on the school.

Make it truly collaborative.

Try your best to keep the process collaborative,

to make everyone have an ownership stake in the roadmap to keeping the beautiful child whose picture is in the middle of the table happy and safe at school and learning.

Because I think that's another part that gets missed with some of our 504 accommodation requests, especially when we're asking for particular things in the actual classroom that our student might need,

is that we want them there learning.

And if they've had a reaction or they're a little fuzzy or groggy from antihistamines,

or they're worried about having a reaction because there was a food spill in the classroom,

they're not able to focus on the education,

which is what they're in school for to begin with.

Caroline: That is the truth, and I think that's the perfect sum of it.

The point is to keep them in school and to keep the classroom functioning highly. And you keep talking about this collaboration, which is perfect because that's just trying to keep everybody in sync together, keep the students safe, keep them happy, keep the classroom safe and happy, and just keep everybody moving forward.

Truly, these are incredible tips, Amelia.

I just appreciate them so much because I know our listeners appreciate them.

But we're at the end of our time together and before we say goodbye, is there anything else you want listeners to hear from you?

Amelia: Ms. Caroline, I would like to encourage our listeners who may not have visited FACT's website or our accommodation section on our website to go visit and to look at our resources that are there.

There's a wealth of information on there that free and downloadable that you can take with you into these meetings or into these conversations with your schools.

But I also want to remind you that we are there if you need us. You can reach out to fact and we will schedule one on one contact with you to discuss your questions and brainstorm your particular situation.

I myself am licensed, if you couldn't tell from my accent in the state of Mississippi.

So I can't give you legal advice if you're not in the state of Mississippi. But what I can do is talk to you as another parent of a student with food allergies who does have some specialized knowledge in this area.

And that really is my favorite part of the work I do with FAACT. I like being the organization's general counsel, of course, because I think we do amazing work. But I really like the work I do as Vice President of Civil Rights Advocacy and working and talking to individual families and getting to hear their stories and learning about their students.

And I become vested in each the lives of each family that I speak with and it's probably my favorite part of the job.

So we're here for you if you need us. That's the long and short of that is we are here.

We enjoy talking to you and feel free to reach out.

Caroline: Thank you Amelia and listeners. I'm going to make sure that all of the links that Amelia discussed today will be in the show notes. I will also have the information on how to reach Amelia and just in case you need her, I look forward to our next conversation because I know that's going to be another information packed podcast.

Amelia: Thank you Caroline.

Caroline: You're welcome.

Before we say goodbye today, we just want to take a moment to say thank you to Genentech for being a kind and generous sponsor of FAACT's Roundtable Podcast.

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