If you’re a food allergy parent and you’ve spent any time online looking up back to school tips for allergy kids, chances are you’ve at least seen 504 Plans mentioned. But if you’re like I was before my daughter started school, you don’t really know what a 504 Plan is or if you really need one.
It can seem daunting at first, no doubt about it. I was so overwhelmed when I first heard about them, I wasn’t sure I even wanted to tackle it. But it’s SO worth it. And I’ll tell you why.
Let’s start with the basics.
What is a 504 Plan? Where does Section 504 come from?
I had originally read somewhere that Section 504 was part of the Americans with Disabilities Act, but while the ADA is very similar in it’s wording, Section 504 is actually a part of the Rehabilitation Act of 1973.
Section 504 states, “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance…”
In basic terms — Section 504 says that if your child has a disability, anyone receiving federal money (including public schools) can’t exclude him or her based on the disability. They must accommodate your child in whichever way you and the school decide.
A 504 Plan is where you specify the ways that your child should be accommodated.
I was lucky, because at my daughter’s elementary school, the guidance counselor there is a complete angel! She knew all about 504 plans and was more than ready and willing to help me set one up for Jillian before she started Kindergarten.
Not all schools have people that feel the same way or even know what 504 Plans are.
You may have to explain what a 504 Plan is to your school or even fight for it. Some schools don’t think it’s necessary. They might even tell you you don’t need it or can’t have it.
They are wrong!
Life-threatening food allergies fall under the category of a disability according to the federal law — “An individual with a disability means any person who: (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment”.
Anaphylaxis most definitely counts as a physical impairment that substantially limits one or more major life activity. If your child has been prescribed an EpiPen, then they are at risk of anaphylaxis, according to their doctor.
A 504 Plan is meant to help keep your child safe and included. You help set it up, and it’s flexible.
Keep in mind you can revise a 504 Plan at anytime. Once you get your plan in place, you’ll want to revisit it each year before school starts to make any changes that you see fit, but you don’t have to wait a whole year. If something is not working out, call the counselor or principal and set up a meeting to make some changes.
I did just that in the middle of Jillian’s first grade year. At that time, snack was being eaten in the classroom (we decided to try it out after a food-free classroom in Kindergarten), with Jillian eating her own separate snack that I provided. All of the students would eat at their desks, and then wipe the desks off afterwards and wash their hands. That is the plan we had set up at the beginning of the year, and I thought it would work out just fine. But several weeks into the year, she started coming home with itchy rashes on her legs. It took me a while to understand what was causing the rashes, but I finally figured it out. Crumbs of the snacks that she was allergic to were falling to the carpet during snack time, and then she was sitting on the same carpet for storytime later in the day.
I called a meeting with the principal, guidance counselor, nurse and her teacher, and we came up with a new plan. No more snack in the classroom. Done!
If you need to make a change to your child’s plan at any time during the year, go ahead and do it!
Now, onto the nitty gritty…
How do I go about setting up a 504 Plan?
First, call your school and get the ball rolling. Tell them you need to set up a meeting to start setting up a 504 Plan for your child. This doesn’t have to be done before the school year starts, but the sooner the better. Every day that your child isn’t covered by the plan is a chance for him to be excluded or put in harm’s way.
Who should be at the meeting?
At our very first meeting, before Jillian’s Kindergarten year, everyone was there! Principal, guidance counselor, nurse, Kindergarten teacher, all specials teachers (PE, art, music), custodial staff, lunchroom staff… anyone who would have any contact with Jillian at all — including those responsible for keeping her classroom and table in the cafeteria clean. It was a crowded room!
The next year looked pretty similar, but now that we’ve done this a handful of times and we have figured out the accommodations that work best for her, our meetings look like this:
Guidance counselor, nurse, teacher and me.
At this point, it’s really just a matter of informing the new teacher each year about Jillian’s allergies and her needs. Everyone else knows the drill.
Examples of a 504 Plan:
Here’s what Jillian’s very first 504 Plan looked like when she started Kindergarten in 2010…
And here’s a more recent one:
The kind of accommodations we set up in the beginning included wiping children’s hands after food activities, me providing ALL food that she would eat, me attending all parties involving food and of course, her EpiPens going with her everywhere she went. Some parents are OK with their child’s epinephrine being stored in the nurse’s office. I am not one of those parents. I wanted it to travel with her from the classroom to specials to lunch and recess. With life threatening anaphylaxis, minutes count dearly, and someone having to run to the nurse’s office, unlock the cabinet, find her EpiPen, and run it back out to wherever she was could waste precious time and end in disaster.
Her EpiPens were carried by her teacher in a fanny pack and passed around to specials teachers and lunchroom aides as the day went on, for her entire Kindergarten year. By first grade, she self-carried her own EpiPens. That’s the one thing I fought for because I found that they weren’t going with her everywhere like I thought. Teachers are busy, busy people, and they can easily forget to grab the medicine bag. With her EpiPens in a SPIBelt on her waist, I didn’t have to worry.
As you can see, we made some changes through the years.
An incident in first grade with a surprise untrained substitute (who brought M&M’s to pass out in class as treats!) led to the part about teachers putting her 504 Plan front and center in their lesson plans, as well as Jillian being moved to another class with a trained staff member if a trained sub was unavailable for her class.
We also moved back to a completely food-free classroom after too many minor reactions involving other kids’ snacks being around.
Some of the changes, however, have been less restrictive and more inclusive. Jillian goes to a relatively small school, and she is the only child with allergies severe enough to require a separate lunch table. So that she wouldn’t be completely alone at lunchtime, I went to the school and had lunch with her each day of her Kindergarten year. (I’m extremely lucky that I work from home and was able to do that!) In first grade, we tried something different. Instead of a separate lunch “table,” we put two desks off to the side of the cafeteria, facing each other, and she got to pick a friend to eat with everyday. Since they were eating at separate desks (we left a small gap between them) and not a table, the friend didn’t have to have a Jillian-safe lunch — if the friend spilled her milk, it would run on the floor and not touch Jillian. Let me tell you, that worked GREAT! I am still amazed and touched at how excited the other kids were to be picked as Jillian’s “lunch buddy.” They all wanted to sit with her so badly, she would have to schedule it out! “I have an opening next Thursday?” It gets me all choked up thinking about it. Instead of being excluded, she was the one people wanted to be with.
By third grade, Jillian was ready to join the rest of the class and eat at the big table with everyone else. By then, I felt much more comfortable with the idea since the kids weren’t so little anymore and wouldn’t be tempted to touch her with cheesy fingers or knock over their milk. And really, by this time, her friends were very familiar with her allergies and were already SO VERY understanding and accommodating. They would immediately wash their hands if they thought they might have touched something she was allergic to. I love those kids!
We specified a corner seat at a front table for her, where she would sit each day, and the custodial staff would make sure to clean it separately with soap and water and a new rag before her lunchtime. The first year she sat there, no one was allowed to sit across from her, only next to her (honestly not sure what the thinking was there — this was the cafeteria staff’s idea, but really, anything to keep her extra safe I’m all for!). By fourth grade, she was still sitting in the same spot, but she was able to have a friend in front of her, as well as beside her. #winning!
She just finished her last year at the elementary school I have grown to love more than words can express. (Tears!!!) I know beyond a shadow of a doubt that she was completely, thoughtfully and lovingly taken care of.
The 504 Plan was a part of why she was kept safe, happy and included, but it was only a part. The staff at our little school is, in a word, incredible. I haven’t had to fight for anything (much), it’s just been done when I’ve asked. But I know that the 504 Plan has been key to keeping consistent accommodations going throughout her years there.
I highly recommend setting up a 504 Plan for your food allergic child. You’ll want all the safeguards you can get!
If you already have a plan set up for your child, what kind of accommodations does your school make?