504 Plan and Celiac Kids

This week I saw some discussion about 504 plans, what they are and if they are necessary.  There’s so very little information out there about them, one person even thought it was an insurance plan.  

In fact, a 504 plan is a federal document that you get through your child’s school.  First, let’s define what it is.  According to the American Celiac Disease Alliance (ACDA),

“Section 504 of the Rehabilitation Act of 1973, a federal civil rights statute, is designed to prohibit discrimination on the basis of a disability in an educational program or institution. This prohibition extends to any educational institution accepting federal funds. Students with a disability under this Act are afforded accommodations and modifications to their educational program to ensure equal access. Celiac disease may be considered a disability under this law.”

So can a 504 plan and celiac children come together?  It is much more likely that child diagnosed with celiac disease be able to get a 504 plan than a child with a diagnosis of gluten sensitivity.  In my opinion, if your child has a gluten sensitivity, you can always ASK for a 504 plan, but there is not guarantee you will get it.

I know many people whose children have celiac disease and their kids do indeed have a 504 plan.  

If you don’t know about what a 504 plan is, you’re not alone. In a study published in the Summer 2013 issue of the Journal of Gluten Sensitivity (and later on celiac.com), Professor of Curriculum at Penn State Altoona, Kay A. Chick, Ed.D. found 74% of parents said their children did not have a 504 plan or an Individualized Education Program (IEP).  Chick said in the report,”most parents had never heard of the Section 504 of the Rehabilitation act of 1973 or had not been informed by their schools about their rights under 504…”  During her study, which was mostly qualitative rather than quantitative, the report says some parents who tried to get a 504 plan were “met with resistance, told they didn’t qualify or were begged by school personnel not to request this type of legal document.”

“Some parents were flabbergasted the school didn’t tell them about the 504 plan,” Chick said in an interview with The Savvy Celiac on Monday.  Still 16% said they did have a 504 plan for their child.

Steps to get a 504 Plan

First, I would recommend you understand what it is before you go into a meeting.  Here are a few  resources to check out:

• Check the ACDA’s website it has a good understanding of the federal documents and what you can expect. I would say this is your first go-to.
• The National Foundation for Celiac Awareness has its own page with additional information and resources. You might find its 504 Plan Roadmap for the Accommodation of a Student with Celiac Disease helpful.

Second, get the process started to request a letter from your child’s doctor about their celiac diagnosis and the required gluten-free diet.  I received this letter years ago, and it is on file with the 504 plan as well as with our nutrition department for gluten free school lunches.  Since getting this letter could take time, you’ll want to get started on it before you have your meeting.

Third, find out who the 504 coordinator is at your child’s school.  This could be people with different roles at different schools.  When my daughter was in middle school it was a special ed teacher.  Now that she’s in high school it is the school psychologist.  The office or the school nurse should know who the 504 coordinator is.  Set up a meeting.  

For your early meetings you should have yourself, your child (if old enough), the 504 coordinator, the school nurse and — your letter from your child’s doctor.   These meetings you may get to know each other and talk about why you want and need the accommodations. It will be at subsequent meetings where you personalize the 504 plan spell out the needs for your child.  

When you meet to finalize the document, Chick recommends the whole educational crew comes together.  “The planning meeting should have all teachers be present. It is more effective than just handing the 504 plan out and expecting change.”  I would totally agree with that!  

We had a rough time with Emma’s FACS (Home Ec/Cooking) class shortly after we got the 504 plan.  The teacher didn’t follow it, I was constantly nagging her for information so I could supply Emma with gluten free ingredients…but she just never understood what I was doing (even after a lengthy celiac gluten free discussion at the beginning of the year).  At conferences, when she said she didn’t know she was supposed to communicate with me, I knew she hadn’t read the plan.  It was so frustrating and disappointing at the same time.

For younger students I would also recommend the principal attend the final meeting as well as the school nurse, the cafeteria supervisor (if they will be getting school lunches), and finally the lunch monitor (so they can help other children from messing with your child’s food).

 504 Plan and Celiac Kids: What do you put in it?

We didn’t have a 504 plan for Emma until the beginning of 7th grade.  I should have gotten one earlier.  It wasn’t until that FACS class came up that I knew we absolutely needed one.  That and school lunch was the primary content in the document at the time.  But yours should be more well-rounded and should even look into the future.

Either way you want them to be VERY specific! Think of every major scenario you can and what the trouble spots would be.  Chick says if it is too generic it doesn’t really serve much of a purpose.

Here are some ideas to get you started:

• Lunch:  Request a gluten-free hot lunch option for your child.  For the same reason your child should be eligible for the 504 plan, they should also be eligible for the school lunch program and getting special accommodations.  Check the ACDA’s website for more information.
• Request access to a microwave to heat up food brought from home.
• Explain that your child not be isolated at their own table, unless parents request it.
• Clubs, activities, sports, field trips.  Require buses to stop at a place where you can get food or that the organization provide a meal for you.
• Classroom teachers should know to provide a gluten free treat if treats are being brought into class for a special event. 
• Bathroom access at all times of the day

There are many more I am certain you can think of that pertain specifically to your child’s situation. 

Gluten-free cake brought in by Blaine HS for reception following Academic Letter ceremony

Our 504 plan came in very handy when I needed backing up for my daughter’s soccer banquet last fall.  After about a week of angst, we finally got the food figured out.  But I am not certain how it would have worked if we wouldn’t have had the plan.  A few months later, when Emma earned an academic letter, I made one call and a school rep ran to the store and got an individual sized gluten-free cake our local Cub Foods store had started carrying.  

Another tip:  It needs management.  No one automatically knew to get Emma’s cake for the academic letter, I had to call someone to get the wheels in motion.  A 504 plan is not something you can just start and think everything will miraculously happen.  

Preparing a 504 plan does take some time (perhaps a month or so). So please plan ahead.  It is something you should consider for your child.  A 504 plan can make your life much easier and help your child have a great experience in school.

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