504 Plans, School & Your Celiac Or Gluten Intolerant Child

Very few of us as parents know what a 504 Plan is and how it can benefit our child if they have celiac disease or any other auto-immune disorder. I certainly didn't know what it was, nor did I want to go through more paperwork if it wasn't necessary. In the beginning of my child's diagnosis, I think we all just wanted it to go away and not be a handicap or make her any different than she already felt.

Statistics quote that 1 in 10 children are anxious while dealing with school and all the stress that occurs when they are behind the 8 ball already. Between parents anxious over grades and under achieving, and the pressures of socially fitting in to the over worked staff, who wouldn't be a bit anxious?

But for those who still don't know what a 504 Plan is, here is the textbook version:

The "504" in "504 plan" refers to Section 504 of the Rehabilitation Act and theAmericans with Disabilities Act, which specifies that no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or postsecondary schooling. "Disability" in this context refers to a "physical or mental impairment which substantially limits one or more major life activities." This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers, and might include such things as wheelchair ramps, blood sugar monitoring, an extra set of textbooks, a peanut-free lunch environment, home instruction, or a tape recorder or keyboard for taking notes.


What no one tells you is that your success in achieving a 504 Plan will be largely dependent upon the County or State Government that governs where you live or what school system you are dealing with.
Hopefully you'll taking my adamant underlining as a sign of how truly frustrating this system can be. Because, if you can't get your school to even heat up your child's lunch, how easy will it be to get an approval which basically makes them accountable? Unfortunately, the majority have the same experience. The positive point we have learned is that at least smaller school systems can manage it better.

The following is merely our unique experience and we hope your experience is a positive one:

It became apparent after my daughter, Erin, was struggling to get through her school year because of repeated lengthy absences from every cold, flu, and virus that went around the school, that she may need some help. Especially in light of the budgets that had been cut for summer schools and tutors in the overcrowded school system of Charlotte Mecklenburg. I had spoken to the school on numerous occasions about implementing this plan and had already gotten a doctor's note which told them of her diagnosis and dietary requirements.

After 2 months of school, we found ourselves in the same position of several colds, lingering coughs, ear aches, and one flu thrown in for good measure. We even started Chiropractic care in search of relief, which was helping.
1. I sent an email to the teacher to please make sure the 504 plan was started and would cover her absences on Nov. 11th.
2. A request was sent for more information on Nov. 14th. After which I received no emails and assumed this was a process.
3. On December 22nd, we had to move out of the house we were living in due to it being sold and decided to move to a smaller school district. This was during Christmas break. We notified the school immediately on Jan 3rd. when school reconvened and asked for ALL records.
4. The new school requested the records also on Jan. 5th and again on Feb. 4th when no records were received. The school notified me on Feb. 14th that no records were sent.
5. Erin got another flu and was out for 4 days. I called the previous school and requested her records, quite angry at this point. The Secretary claimed she had received no requests and assumed we were homeschooling again. What?! I asked about the 504 Plan submission, and was told we left before it could go into effect - Yes, 6 1/2 weeks later...But they should still have the current 504 paperwork which was submitted right? I mean, that should be in her file, right?
6. As of March 7th, we still have no original copies of the 504 Plan paperwork and the school claims to have sent over all of the file.
7. I called to ask for her medical records to be transferred to new pediatrician closer and to get proof of her visits and paperwork which the nurse informed me I would have to pay $25 for, a copy of only her immunizations is free. (Really???)
8. On March 9th, she sees a new physician and we will have to pay Copays and fill out paperwork again, request more paperwork again, and start the process in the new school again because the deadline is March 31st.

More updates to follow as they happen...


Nikki Everett