FAACT's Roundtable

Ep. 213: Back-To-School Must-Knows About Accommodations

• Amelia Smith • Season 4 • Episode 213

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Back to School is here, and one of the most powerful steps any family can take is understanding their legal rights and how to stay calm and cool if their student hits challenges. We’re sitting down with FAACT’s General Counsel, Amelia Smith, JD, to hear her top Must-Knows about the Americans with Disability Act, K-12, and College so your family can start the school year equipped with the best knowledge possible.

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Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Caroline: Welcome to Facts 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 facts 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 FAACT's Roundtable Podcast. I am a food allergy parenthood advocate and the founder of the GratefulFoodie blog, and I am FAACT's Vice President of Community relations. Before we start today's podcast, we would like to take a moment to thank Genentech for being a kind sponsor of FAACT's Roundtable Podcast. Also, please note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast. Information presented via this podcast is educational and not intended to provide individual medical or legal advice. Please consult with your personal board certified allergist, health care provider, or local legal counsel for advice specific to your situation. Back to school is here, and one of the most powerful steps any family can take is understanding their legal rights and how to stay calm and cool. If your student hits challenges, we're sitting down with FACS general counsel Amelia Smith to hear her top must knows. So that way, your family can start the school year equipped with the best knowledge possible so you can enjoy an amazing school year. Welcome back, Amelia, to FAACT's Roundtable Podcast. We're so thrilled you're here today.

Amelia: I'm so happy to be here, Caroline.

Caroline: Before we get too deep in today's conversation, I want to share a confession. Almost ten years ago, I sat in on my first lecture with Amelia about back to school and our legal rights. And it was such an amazing moment. She had shared so much information about understanding food allergies and our legal rights, how to stay calm and work through problems, and she especially shared some very impressive teacher insight. And I've carried this with me. And during that lecture, I wrote down all sorts of notes, and then I transferred that information to these little note cards that I actually still have, and I called them my Amelia isms, and they were just amazing. So, listeners, you are in for a wonderful podcast today. So I hope you have your pencils and pens ready or your phone ready to take notes. And, Amelia, before we get started, what do you think of those Ameliasms?

Amelia: Oh, Caroline, it makes me feel so good to hear everything you just said, because that's the whole reason I do this. And I tell all my families that I work with one on one, that I become so vested in, in their journey and their students journeys and their story. And so it just, it really makes me feel great to say that. And I love that you called them Ameliaisms. I've always loved that. Some people understand it, some people don't. But I do seem to have my own unique spin that I put on things that help people understand things better that they may not get from another lecture or presentation.

Caroline: Exactly. And that's what I've always liked, is you're so relatable and I can take my little notecards and I can write these things down and still have them like ten years later.

Amelia: Everything is to eventually teach our students to advocate for themselves.

Caroline: That's exactly the point here. You're teaching the parents and then as a parent and caregiver, we're going to go and teach our students so they can handle this more and more as they get to high school and college. So let's dive into our first question. So, as we both know, back to school is just really exciting, but it's also really nerve wracking. And then we all know that the best laid plans can take a really unexpected twist and confusing us about what to do next. So can you help us explore what to do when that moment hits and Mama Bear wants to come out? But we need to slow down and gather the facts to determine the next steps.

Amelia: Best place to discuss what you brought up just a few minutes ago about teachers and educators. My biggest reminder to parents or caregivers that might be butting heads with the school is to remember that teachers and educators typically, I can't say always because we know there are always bad apples everywhere, but they typically do not get into education for the money we now know teachers are not paid what they deserve. They are not valued for the worth that they give our community. But they got into education to help our students. Oftentimes we know that the bureaucracy of schools and the concern about standardized testing and all of this gets in the way of that. And teachers and educators, especially administrators, can become jaded throughout their careers. So it's important to keep the focus on our individual student and to remember that they're not the enemy. If you are frustrated, instead of lashing out at the school, it might be best to find a support group in your area. Go there, talk to them. They've likely had similar experiences. Find a friend to bounce it off of. Professional education advocates are a great source here too, to work out those things. But it's really important to keep our emotions in check because a lot of the school's emotions and the administrator's emotions, teachers emotions that we're dealing with come from fear and a place of ignorance. They don't have the education they need. So it's important to take a step back, remember why we're all there, and keep the focus on the individual student. I often sometimes take a picture of my student, big, blown up, eight by ten, whatever, and lay it in the middle of the table for the ability to point to the picture and say, okay, let's get our attention back here. And this is my child. This is what little Sally, or little, in my case, Robert need. This is why that seems to help redirect the focus. When people's emotions run a little high. Instead of one tip, there was several all thrown at you at once. I think it's important to remember that teachers are here for the right reasons.

Caroline: So now what is your first must know legal piece of knowledge for our listeners?

Amelia: It's important, I think, to start from a place of recognizing that food allergies may be a legally recognized disability. And I say maybe because you have to go through the definition of a disability under the law to say, okay, yes, my student has a legally recognized disability. Because, again, in disability law, the focus is on the individual person, the individual student, not all people with food allergies. So to be considered a person with a disability entitled to accommodations under section 504 of the Rehabilitation act of 1973, which is where most of our food allergies students fall, you're going to look at the definition of disability in its current form in the law, which is the Americans with Disabilities Act Amendment act of 2008. To be a person with a disability under the ADAA, the individual must have a physical or mental impairment that substantially limits one or more major life activities. That language right there, the one or more major life activities is why it's so important to focus on the individual, because under this current law, major life activities can include a huge list of things, and I can go through them, but I'm going to sound like the person on the end of the pharmaceutical commercials that run through the list of side effects. Because it's quite long and inclusive, it says that the major life activities can include caring for oneself, performing manual tests, walking, seeing, hearing, eating, speaking, breathing, learning, working, sleeping, standing, lifting, bending, reading, concentrating, thinking, and communicating. Additionally, Congress also defined major bodily functions, such as the immune system, which we know is involved in allergies, especially food allergies normal cell growth, digestive system, bowels, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions as major life activities. And then Congress goes on and says, but this list is not meant to be an exclusive list of major life activities. There could be others that fall under this category. So when we're looking at students with food allergies, we want to recognize that they are at risk for anaphylaxis, which is a life threatening condition that can significantly impact the major life activity of breathing. But also, food allergies can affect the other major life activities, which, as I was going through that list, some of them may have stood out to you. That could include eating. Food allergies limit what our students can eat. Breathing if they're having respiratory issues. Okay, respiratory system. There's there, too learning, because they may be focused on everything else in the classroom and not what they're, you know, supposed to be learning. Concentrating falls along that same lines. We know it's an immune system response. We know that there are digestive responses, bowel responses, respiratory, circulatory. All of these responses and systems are involved in food allergies. So it's very obvious under this definition that food allergies could be considered a disability under this definition, so long as it affects any one of these major life activities.

Caroline: That was an absolutely perfect explanation because I think this area gets confusing for a lot of us because we don't look at our students necessarily and families as having a disability. Cause often in our mind, we think physical disabilities, things that you can physically see what I mean in terms of physical. And so this is so important. Cause I've heard so many families say, oh, our children aren't disabled. But you know what? We've got these protections in place, so.

Amelia: Let'S use them well and bring that up that you hear family saying, our students aren't disabled. That's one problem that the food allergy community may have created for itself. So we really should be careful to make sure that we're not shooting ourselves in the foot. The other thing is, I really don't understand why we look at using the term disability when talking about our child and their personal identity as if it were something to be feared or something to be ashamed of. It's what makes us all individuals. It's a legal definition. It is what it is, and it helps our student to be identified as a student with a disability. It helps them to get the accommodations that they need, and without that identification, can't necessarily get. So it's very important to help our children recognize this and not to look at it as something to be ashamed of or something to fear because we want them to eventually be able to advocate for themselves. If they see you hesitating or you not completely celebrating just this individual trait of your student, then they are not going to be able to do it effectively. The second tip I would say, and you've heard me mention this several times leading up to this, is focus on your individual student and your individual student's needs. That's what the law focuses on is the individual needs. We want to remind the teachers of our individual student. Personalize it for them. Bring that picture. Remind them that we are talking about one of the students that they care about. Focusing on the why helps us do that. It also is how you're going to support your request for accommodations. You can't print out the entire eight page list of sample accommodations that we found on faxitive civil rights Advocacy Resource center on our website, but you cannot print out that entire eight page list. Take it to the school, say, my child has food allergies and I want these eight pages of accommodations. You're not going to get it. The next reason for explaining the why is we may still have some medical professionals that don't necessarily get behind certain accommodations we're asking or without explaining. There have been studies that show that school wide food bans are not effective at reducing the use of epinephrine. That's really what those studies look at. That's their gauge of whether it's effective or not is did it reduce the number of times epinephrine had to be used in a school with food ban versus schools without a food ban? That's what that whole study involved. The medical professionals typically look at that as saying we do not support these food bands because of XYZ or restrictions, but they can recognize, and often do recognize that there may be specific and special circumstances where classroom restrictions might be appropriate or restricted or specialized seating in cafeterias, food, dining halls, those kinds of places would be important. And some of those areas are developmental areas if your child is not developmentally ready. So they look at younger children. It's important to point out if your student has any sort of developmental disability that may limit that ability to care for themselves as they age. It's also important to point out if your student's being bullied. That is the case where we may want to avoid food in the classroom. That wouldn't be generalized to all students with food allergies. It would be specific to your students needs psychosocial development anxiety, things that go along with that, those are important considerations and are things that are individual to your student that further support your request. That is another reason that we want to focus on the individual. One, we don't want to ask for more than we need. We want to support our requests and show that we're not just saying we want this because of the fear behind our student having a reaction or I don't want it anywhere near my child, because a lot of times that is how we are seen. And while we may be coming from a place of fear and need to educate ourselves about accommodations and food allergies in general to realize how appropriate our requests are, sometimes, most of the time it's that schools think that's where we are as food allergy parents. They don't understand, and even medical professionals sometimes think that we're there as food allergy parents because we're terrified of our child having the slightest exposure to their this hypothetical slight exposure to their allergens. They may not know that our child is being bullied with their allergens in their classroom and they don't need them there. So it's really important to explain this why, and I've had to have this conversation lately with medical professionals, and so I guess that's why it's in the forefront of my mind right now. And I've been fighting this fight on grassroots, national level out there for families. I really need the families that we work with to support me in this and to really just have this discussion with schools and medical professionals. Because when you're having to explain it to the professionals, it means we need to do more education. And the more of us that do it, we perpetuate that. So that's another little sidetrack. But that is something that I have noticed just in the last few months. That's still a real barrier to some of these accommodations for our students is that we assume that it's considered by the schools and the doctors that this might be happening, and it's not. They think that we're coming from a place of fear. So it's very important to get back to what we were saying. It's very important to focus on the why. Why does my student need this accommodation? Why am I asking for it? What's going on in the particular school, or what's going on in my particular student that supports this? I think that's something that we really haven't discussed in many of our podcasts before, looking at it from that angle. So I think that may have been a little longer than we intended, but I think it's important to discuss.

Caroline: That was really important, and I'm glad you brought that up, because you're right, explaining that why and why my student might need something very different from your student, because my student maybe have had multiple exposures or something going on that was very different. And it goes back to what you were saying, it's all individualized. So this was a really big piece of information, and I really appreciate you sharing that with us and also listeners. Just so you know, I will make sure that I have links in the show notes to the different resources that Amelia is discussing. Fact, resources, resources, you know about the ADA and so forth. So I just want you to know, check the show notes. And now let's turn our attention just kind of briefly over to college. So fact offers a legal consideration section in our college resource center. Can you explain on what students and parents and caregivers should find a focus on when they're heading to college with food allergies? Like, what's the most important piece of advice you can give from your perspective for students heading to college or in college even right now?

Amelia: Well, as you mentioned, of course, with the legal consideration section of our college resource center, you can go there and see and find the cases that support dining accommodations and housing accommodations, the different accommodations that your student would possibly be seeking college. But before you head down that trail, yes, of course it's important to be educated on what's possible and the laws that support it or the decisions that support it. The most important thing I can advise when working towards accommodations in the college setting is to start with your disability services office. Disability services office, which you can hear in previous podcasts. And if you hear me talk about them at all, you will probably hear them me refer to them as dsos. But dsos are where you want to go. They could be called your student success center. Academic Success Center Office of Accommodations Office of Accessibility Office of Disability these are the words that you want to look for to find your school's dso and to figure out where to start. And usually you can find those on the website, whether it be under accommodations or sometimes it's on the very bottom in a little teeny, tiny link that says accessibility or accommodations, disability, anything of that nature, start there. That is the office tasked with ensuring that the school is properly accommodating students as required by federal disability law. Every university should have some office that does this. They are there to one say, yes, your child qualifies for the accommodation, just as the 504 officer would be doing in k through twelve. But they are the ones that also are tasked with helping your student navigate these waters to get the accommodations they need. They are there to act as a go between, a mediator. They will know who you need to. Well, I can't guarantee that they all will know immediately, but they are the person tasked with finding out who you need to talk to. In with dining or housing or athletics or music, any of the areas where your student might need accommodations, health center. That's the place to start. You may start somewhere else, get four months down the road and then hit a snag and then have to go through the DSO process. So it's very important to start there. If you've done this, don't feel bad if you've started somewhere else. It's very common and so I think that's probably why that is. My number one tip for families going to college is that they don't know that these offices even exist. And so I think that's very important to know that they exist. They are there to help you. They are supposed to know the laws, they are supposed to make sure that the school follows the law. And most of them actually take a personal interest in your student. That's the other thing. If the person they're working with isn't, they need to find their champion in that office and develop a personal relationship. And then that person becomes vested in your student. Just as I am when I work with families and just as teachers should be. When you focus on that individual and focus on the why dsos are extremely important, find them, make them your friend.

Caroline: Excellent advice and I think you brought up a good point is a lot of families, as they transition from high school into college, they don't realize that these services are out there. So I'm really glad you brought that up. That that's just your number one step. So now, since we're coming toward the end of our time together, what is your final must know for back to school k through twelve and college?

Amelia: Lastly, I would want families to know that fact is here for you. We have amazing resources that are all free, many of them downloadable. We have a very extensive online civil rights advocacy resource center that can be found on our website. I know Caroline will drop in the show notes. We also have our college resource center that does have a legal consideration section. We have recorded many back to school podcasts. Now we have a broadcast on college accommodations and we offer free one on one contact with families for civil rights advocacy concerns. I usually do those. So I do have to say, of course I cannot give legal advice if you don't live in the state of Mississippi. But what I can do is talk to you as a parent, as another parent of students with food allergies who has specialized knowledge in this area. So we may talk about federal law, or we may talk about what you're asking for, but usually what we do is brainstorm. That's one of my favorite things to do with families, is brainstorm alternative solution. You'd be surprised how many families call and say, I'm asking for this accommodation that is not only is necessary, but seems extremely reasonable and a school is fighting me on it, but they're not giving me an acceptable alternative. That is one of my favorite things to do with family.

Caroline: So Amelia, thank you so much. That was just an amazing podcast, just packed with information. We're going to have fabulous links. Amelia, thank you again for your time and I look forward to our next conversation.

Amelia: Thanks Caroline. I do too. I always enjoy podcasts.

Caroline: Thank you. Before we say goodbye today, I just want to take one more moment to say thank you to Genentech for their kind sponsorship of FAACT's Roundtable podcast. Also, I want to note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast. Thank you for listening to FAACT's Roundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcast, Spotify, Google Podcasts, iHeartRadio and Stitcher. Have a great day and always be kind to one another.


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