Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

504 Plan


africanqueen99

Recommended Posts

africanqueen99 Contributor

Anybody that has one - please chime in and tell me if I'm missing anything or asking for accommodations that are not necessary.

 

Thanks!

 

***

 

504 PLAN

X (DOB: she is currently 7/2nd grade)

Diagnosis: Celiac Disease

 

WHAT IS CELIAC DISEASE?

Celiac disease is a hereditary autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.  Celiac disease is triggered by consumption of the protein called gluten, which is found in wheat, barley, malt, rye and most oats.  When people with celiac disease eat foods containing gluten, their immune system responds by damaging the finger-like villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream.

 

TREATMENT:

The only treatment for celiac disease is a 100%, life-long gluten-free diet, which means avoiding all forms of wheat, barley, malt, rye and most oats.  Gluten containing crumbs can cause a severe reaction.

 

GOALS OF THIS 504 PLAN:

1. Adhering to all aspects of the 504 Plan to avoid gluten.

2. Assisting X to maintain a safe environment through preventative measures.

3. Recognizing the signs of a reaction and treating it promptly in all school contexts.

4. Striking a balance between safety and social normalcy, providing the same opportunities and conditions as X’s peers, and offering encouragement to the child.

5. Encouraging open and on-going communication among adults about food intolerance issues and doing so discretely and in the appropriate forum.

 

TRAINING:

All staff members coming in contact with X should be trained regarding: What is celiac disease?, treatment of disease, importance of not giving any food and keeping a safe environment, and allowing student unrestricted access to the bathroom.

 

 

CLASSROOM MANAGEMENT (including classrooms for specials)

  • X should be allowed bathroom privileges without restriction.  She will follow typical protocol of bathroom requests when it is not an emergency.

  • Teacher will communicate with parents about upcoming projects which may require alternative foods or materials.

  • X must be careful with use of the following materials for classroom projects or completely avoid their use: play dough, paper mache, cereals and other gluten containing food, pasta, flour, paste, envelopes and stamp adhesives.  Hands and surfaces must be completely washed after the use of these materials. Parents will provide a list of alternative materials if the class plans to use any of these materials.

  • Parents and teacher will work together to monitor classroom events that include the use of food.

  • Alternative food treats for students’ birthdays will be left at school in the teacher’s care.

  • Parents will provide teacher a list of safe, gluten free candy to use for rewards, activities, etc.

  • X should be allowed access to soap and water to wash hands after touching gluten, before lunch/treat opportunities and after time on the playground (hand sanitizer and/or hand wipes are not acceptable options in removing gluten).

  • X’s desk should be wiped down with Clorox wipes following gluten touching it.

  • If X has a gluten attack and needs to be absent from school it will not be held against her overall missed days and homework will be sent home to be completed.

 

LUNCH/SNACKS

  • All lunch and snacks will be provided from home.  X is not to eat any food provided from the cafeteria.

  • X’s assigned cafeteria table should be wiped down with a clean cloth before her class arrives.

  • Parents will leave two boxed, shelf-stable, lunches at school to be used in an emergency.

 

CONTACT

  • In case X ingests any gluten or shows sign of contact with gluten, parents should be notified that day by phone or email.



                            


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

What about missed days due to being too sick?

africanqueen99 Contributor

I have:

"If X has a gluten attack and needs to be absent from school it will not be held against her overall missed days and homework will be sent home to be completed."

 

Do you think there is a better way to word it?  I'm open to changing things around.

cyclinglady Grand Master

I agree with Shadow.

 

Plan for the future.  When they get to the upper grades, your daughter might get a kooky teacher who penalizes your child for absences by slamming them with extra homework or requiring them to make up all work when the curriculum/homework is already too rigorous.  We experienced this last year -- I kid you not!

dilettantesteph Collaborator

At my child's school, we are required to relinquish HIPAA rights in order to obtain a 504 plan.  I didn't like that idea.  Do you have to relinquish HIPAA rights?

 

The work load is a definite issue.  At my child's school, they give one day to make up each day sick.  It is a problem when on return to school, they have to double an already difficult work load.  This is even worse when they aren't all the way better yet, but just need to return to school to prevent getting even further behind.  Maybe you need to ask for twice the usual make up time up front to allow for a more complete recovery before crunch time.

 

Another problem is that when my son is too sick to attend school, he is also too sick to do schoolwork at home.  Your 504 plan seems to assume an ability to do work at home that may not be a reality.  That has been an issue for us.  The teachers expect him to come back to school with any work sent home completed.  Sometimes he needs further explanation and sometimes he wasn't well enough.

 

Does your child react to flour in the air?  Will your child be in a classroom where cooking with flour is occurring or has occurred?  There are gluten-free versions which could be substituted.

 

How old is your child?  During the teen years your child might not always communicate with you completely.  You may want to ask the school nurse to keep you informed if your child is lying down in the nurses office rather than attending class.

 

It sounds like you are being good parent carefully setting this all up.

massagemamaof3 Rookie

Thank you for these ideas! I just got off the phone with the school nurse, she is very informed on Celiac since there are a few other students that have it. She was the one the suggested the 504 to me and said that it will be very helpful when my dd goes to jr high next year. The flour cooking issues and bathroom issues will be the big ones for us since they are very limited once they get up into the higher grades. I will be using this as a go to when I have to do mine!

africanqueen99 Contributor

dilettantesteph - This is the first I've heard of giving up HIPAA rights.  I will sign a form that allows them access to speak with her GI, but it seems pretty basic.  Hmm.  That's interesting.

 

My daughter is 7 (2nd grade) so workload isn't an issue yet, but that makes a lot of sense.  I need to consider longer term to this document.

 

She's nowhere near cooking classes yet.

 

I presume that there would be an annual meeting with the staff at the school to update and modify as she ages.  Is that your experience?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

I would NOT ever give my kids school permission to speak to any of his healthcare providers. They don't need access to them for a504 plan and it can really backfire. Many Dr's understand the disease itself but do not understand how to live with it much less the ins and outs of dealing with it at school. They ideas they have May not be what your kiddo needs and I have seen things go really wrong for parents when the schools have access to the Dr's.

dilettantesteph Collaborator

I would NOT ever give my kids school permission to speak to any of his healthcare providers. They don't need access to them for a504 plan and it can really backfire. Many Dr's understand the disease itself but do not understand how to live with it much less the ins and outs of dealing with it at school. They ideas they have May not be what your kiddo needs and I have seen things go really wrong for parents when the schools have access to the Dr's.

 

Thank you for confirming my opinion.  It is hard to find a doctor who is really knowledgeable about celiac disease and who keeps up reading the latest studies.  They want me to hand over my child's school care to some district doctor who I've never met.  What assurance do I have that she knows anything about necessary precautions for celiac disease?  My son's doctor has already had problems with district physicians misusing her words.  If it means not having a 504 plan, I guess that's what we have to do.

StephanieL Enthusiast

A diagnosis from the Dr. is all you need for a 504 plan. They do not need anything more than that and if they say they do you should talk to her OCR about it. Your child qualifies for a 504 and if the school is refusing, as long as it's a public school or they recieve any public funding, they can get in BIG trouble if they don't provide one!

Sounds like your Dr. is savvy to NOT speak to the school. Have you sent a writer request for he 504? They have 30 days to have an eligibility meeting at which time you can supply documentation from you child's Dr. about the diagnosis. Perhaps you've done all this so I'll stop talking your ear off :)

All his to say, unless the school is paying for your child's medical treatment, they have no need to speak to your Dr. directly!

africanqueen99 Contributor

Stephanie - thank you so much for providing input. I seriously hadn't given much thought to allowing communication between the school and the GI. You're right - they don't need that! I like our doctor, but she doesn't know the ins and outs of MY kids.

I was supposed to meet with the 504 committee last week, but we had a snow day. I'm glad that it provided me an opportunity to really reconsider my initial thoughts.

dilettantesteph Collaborator

My school district's policy is that you have to sign the HIPAA form to get the 504 plan.  It seems to be legal within our state's laws.

frieze Community Regular

what is their reasoning?  I would certainly put limits on what can be released, ie only that which concerns the disease process in question , and only after you have been notified.

StephanieL Enthusiast

I would ask for that in writing. 504 if a federal thing so I really don't think they can ask for a HIPPA release.

dilettantesteph Collaborator

Thanks for your thoughts.

  • 3 weeks later...
seezee Explorer

Another thought. I think often some adults tend to over-react. I'd add something about maintaining X's privacy and not singling her out. We had some phrase like that in our 504. When my daughter was younger teachers would sometimes send her to sit off in a corner or announce to the class that Y's mom brought pizza but because A has celiac and it's not gluten free we can't eat it.

 

Also, the Children Hospital Boston has a pretty good page on this:

 

Open Original Shared Link

 

and they have a school packet here with other resources.

 

Open Original Shared Link

  • 5 weeks later...
africanqueen99 Contributor

Thanks again for all your help while putting this together.  We met today to put together the plan.  And, I just have to brag, I love my daughter's school!  The Principal started with how much they care about the kids and that they always work with parents - even without a 504, but he's always happy to have the plan in place.

 

Everything went without a hitch.  We were all in agreement that the plan was needed, that the accommodations were necessary and the group (substitute nurse, principal, counselor, head of medical services for district) thought of some things I hadn't considered.

 

I'm so happy to know that they really do focus on keeping my kid safe during the hours they have her!

 

Thank you for walking me through this process.

StephanieL Enthusiast

Awesome job Mom!  Sounds like you have a great working relationship with the school which I have found to be the most important thing!

Cara in Boston Enthusiast

When I was researching what to include in our 504 plan I came across several examples that included a "shelter-in-place" plan.  Most schools have one for emergency situations, but they wouldn't necessarily include food that would be safe for your child.  I didn't think too much about it (frankly, it sounded a bit excessive to me and I didn't want to look like a crazy lady) but the recent incidents in Atlanta have changed my mind.

 

I am amending our plan to include a "shelter-in-place" plan.  I am sending in 6 shelf-stable meals (GoPicnic snack meals from Target) and the plan will list where they are located in case of an emergency where students need to stay at school for an extended period of time. 

africanqueen99 Contributor

^^^ Yep!  They're keeping Go Picnics for me in the nurse's office.  We live in a large district that has one facility that makes the food and delivers daily.  If the Atlanta event happened NONE of the kids would be eating (except my kid and her special food!).  This elementary is smack dab in the middle of a neighborhood and I have no doubt that people would bring food to the kids.

 

Anyway, the plan is mostly in place in case I ever forget to pack her lunch.  We do keep Go Picnics in the house at any given moment in case the morning is chaos and I run out of time.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.