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missdiamondbc

504 Question

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Hi  :)

I posted in "Coping" regarding my 8 year old daughter's diagnosis.  I didn't scroll down far enough to see this forum.

 

I was reading the topic on school snacks, and some of you talked about your child having a 504.

 

Is Celiac covered under a 504?  I went in earlier this year for a SST meeting and they told me my daughter didn't qualify for one based on having ADHD, possible mild Asperger's (neuropsych eval next week), urinary issues, and other sometimes severe behavior issues.  I wasn't asking for many accommodations, I just wanted everyone on the same page (which they never are).  I was told no because she is smart and doing well academically.  I even called higher up in the system and was dismissed.  Fact is, they give her the accommodations, they just don't want to have the paperwork saying they do.

 

If I go in again, I need concrete accommodations for them.  My daughter doesn't have any physical symptoms of Celiac except for constipation.  So I'm thinking that it won't be easily to tell if she's been accidentally glutened.  

 

Thanks in advance for any advice  :)

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Yes, celiac is covered for a 504 Plan.  Were you asking for an IEP for the ADHD?  It's been my experience that IEPs are much more difficult to obtain.  Just having a true celiac DX is enough to get a 504 in a *publicly funded school*, though.

 

You'll need to ask the school to put together a 504 meeting.  They'll pull the people together (Principal, VP, counselor, nurse, teacher, and the person that oversees the program - in my district that's one person's FT time) and you will be invited.  When you get to the room you will want all your accommodations ready - and make a copy for every person in the room.

 

Things to consider:

unrestricted bathroom access (meaning, if it's an emergency, she doesn't have to ask - just go)

unrestricted handwashing access

gluten-free project supplies, art supplies

safe lunches kept at school for her in the nurse's office

safe snacks kept in the teacher's room

safe treats kept in the teacher's room

personal Chlorox wipes for her desk and/or to clean the lunch table before eating

 

I can look for our actual plan, but looking through this forum will help you find a ton of info.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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I was asking for a 504.  Basically, she is like a bomb.  I wanted accommodations to help detonate it, but they want her to explode before giving her any accommodations.  They decided they are just going to unofficially accommodate her, but it is not uniform throughout the school.

 

Because of the urinary issues (frequent accidents, which aren't really accidents...more behavior induced), she is allowed to leave without asking to use the bathroom.  

 

I've already spoken to the nurse about keeping food there for her.  And about packing a breakfast for her (they receive free breakfast in the classroom).  I hadn't thought about cleaning wipes.  Isn't that something the school should be doing for her, especially in the cafeteria?

 

Thanks :)

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It sounds like you need both and IEP and 504.  A childs learning DOES NOT need to be impacted to qualify for a 504 plan and you are right, it is something that is in place in the hopes that everyone is on the same page.  

 

As for what it's good for is child dependent.  You should never ask for more accommodations than are absolutely necessary as the longer the list the more likely it won't get followed.  Should they be wiping things down for her, yes.  Should they not use playdoh in her class, most likely yes. Should they check art supplies, sure they should be.  I always thing the most important thing is for them NOT TO FEED my child. Anything that isn't from home shouldn't even be offered to him.  We have food in the nurses office for emergencies.  

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The cafeteria wipes down tables with their old dirty rag, so my kid owns her own health. A thing of wipes is attached to the wall for her to grab one and use (school provided). She also keeps a container in her desk, just in case (mom provided).

Like Stephanie said - figure out what you need and go from there. And be ready to put in the leg work b/c you're the one that will be dealing with the specials teachers to check supplies.

The biggest thing is getting your kid to advocate for herself. She will get there.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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It sounds like you need both and IEP and 504.  A childs learning DOES NOT need to be impacted to qualify for a 504 plan and you are right, it is something that is in place in the hopes that everyone is on the same page.  

 

No chance in an IEP.  She has a speech delay and they won't take her for that because it doesn't cause an academic issue.  Seriously?  Articulation has nothing to do with academics.  

 

In the district my child is in, EVERYTHING is dependent on educational impact.  They won't consider anything for her because she does well in school (obsessively so...to the point where she pees herself because she's afraid of missing anything in class).  She's a complete social outcast but nobody cares about that either.  I went to the top of the chain in the district and was given the same answer.  Academics good...no 504.  However, if I even hint about taking her off her ADHD meds, everybody in room goes pale.  Yet there is no issue...

 

Did I mention I've been teaching in public school for 14 years :)

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Per the ADA though, learning DOES NOT need to be impacted. If the kids activities of daily living are impacted, they are eligible for a 504 plan- that's the law.  Now how hard you are willing to fight for one is up to you.  Some are able to get by with an IHP but legally if the kids ADL's are impacted it's 504 territory.

 

 

"Eligibility

The child who has a disability or impairment does not automatically qualify for special education services under the IDEA. If the child has a disability but does not need special education services, the child will not qualify for special education and related services under the IDEA but may receive protections under Section 504 of the Rehabilitation Act.

To be eligible for protections under Section 504, the child must have a physical or mental impairment. This impairment must substantially limit at least one major life activity. Major life activities include walking, seeing, hearing, speaking, breathing, learning, reading, writing, performing math calculations, working, caring for oneself, and performing manual tasks. The key is whether the child has an "impairment" that "substantially limits . . . one or more . . . major life activities."

Section 504 requires an evaluation that draws information from a variety of sources. Section 504 does not require a meeting before a change in placement.

- See more at: http://www.wrightslaw.com/info/sec504.summ.rights.htm#sthash.1oaXl3PY.dpuf

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The letter from her physician with her DX listed as celiac is all you need to get a 504.  How badly do you want to fight for it?


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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I was wondering about this too. Would this help for missing days of school because of celiac pain? My daughter was diagnosed a couple of months ago and has missed quite a few days already because of it. What else is it good for?

It's also good to have a "same page" mentality.  If you talk to the teacher about unrestricted bathroom access and she abides.  Great.  But what about when a sub shows up, your kid has an issue and runs out of the room?  That's not fair to the kid that everybody doesn't follow the same rules.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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Your story sounds much like ours.  Our teachers were great at being accommodating, but if there was a mistake, I had no recourse without a 504 plan.  Once I looked into the plans, I realized how much could go wrong and knew it really had to be in writing.  As your child gets older, things like missed school days will also become more serious.  

 

My son was also diagnosed with Aspergers a couple of years after going gluten free.  The school REALLY dragged their feet with setting up a IEP for him because academically, he was far above the other kids in his class (not uncommon for Aspergers).  They kept telling me that as long as his access to the curriculum was not hampered by his "disability" there was nothing for them to do.  In his evaluation, it listed Social Skills Training as a needed support, so that was really all I was asking for.  The school told me there were no other children enrolled (800 students, Boston Public School, really?) with Aspergers and so there wasn't even a Social Skills group for him to join.  

 

The minute I let them know that I had read the state mandates (social skills are covered, separate from academic skills), knew what he was eligible for, and would not take no for an answer (I may have also hinted that we had been in contact with a lawyer even though we were not) they called a meeting and set it all up.

 

The weird part was that they said that since he now had an IEP, he could not also have a 504 plan, even though they were separate issues.  They turned his 504 plan into a "health care plan" on file with the school nurse and left it at that.  He will be changing schools next year and I plan on getting both the 504 plan and the IEP.   It was really frustrating and sad.  I bet the majority of parents don't have the time or energy to fight it and I wonder how many kids are getting left behind.   We weren't even asking for much at all. . . 1 hour a week for a social skills group.  Nothing more.

 

Don't give up and make sure you know your rights.  Do not trust what is being told to you and get all responses in writing.  I knew the coordinator was being shady when she would call me on the phone rather than respond to my direct questions in writing (email).

 

As for the clean eating surface . . . I do not trust the cafeteria staff to clean the tables sufficiently (the rags they use are pretty gross) and my son is a typical 9 year old . . . doesn't want to seem different and certainly doesn't want to wash the table before sitting down.  We found a cool lunchbox that unzips to become a "placemat" of sorts.  He loves it and doesn't feel weird using it.

 

http://www.flatbox-lunchbox.com

 

I'd be happy to share the text from our 504 plan to give you an idea of what we included.  I got lots of advice from this forum as well as other sources.  Just send me an email at :   myboytom@yahoo.com

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To save time, here's the text of what was in our 504 plan:

 

Information for 504 Plan for Celiac Disease

Joseph XXXXX

 

Date of diagnosis:  March 2011

Amount of time on a gluten-free diet:  3 years

 

OVERVIEW OF CELIAC DISEASE

Celiac disease is an autoimmune disorder that damages the small intestine and interferes with proper absorption of nutrients. People who suffer from celiac disease cannot tolerate the protein gluten found in wheat, barley, rye and most oats. Gluten is widely used in processed foods and can be difficult to detect by just reading the label. In addition, there are some hidden sources of gluten both in food and in unusual items such as art supplies and postage stamps.

 

TREATMENT

Celiac disease is not an allergy. Exposure to gluten does not cause anaphylactic reactions. An Epi-pen or other medical intervention is not needed. The only treatment is life-long adherence to a 100% gluten free diet. Even small amounts of gluten (due to cross-contamination of eating surfaces or cooking equipment) will make Joe ill and trigger an autoimmune response.

 

Joe should only eat food that is:

·      brought from home.

·      in a sealed package that is clearly labeled “gluten free”

·      previously determined to be safe (he will recognize)

·      approved by parents (just give us a call)

 

SYMPTOMS / SIGNS OF INGESTION

There are a variety of symptoms that children may display when exposed to gluten.  The symptoms can change over time so we are not really sure what to expect.  In the past, Joe has developed gastrointestinal (GI) upset manifested by vomiting, diarrhea, gas, and bloating.  A stomachache, headache, and/or achy joints have also occurred.  He has also had behavioral symptoms such as irritability, inability to concentrate, restlessness, or sleepiness. Symptoms can come on suddenly or occur a few days after ingestion. Symptoms can continue for several days or even weeks after ingestion.

 

ATTENDANCE / ABSENCES

In the event that Joe accidently ingests gluten, he may be absent from school for several days.  Teachers will work with parents to ensure he keeps up with his schoolwork while at home, if possible.

 

MEALS AND SNACKS

Joe will bring all meals from home.  There is no need at this time for the BPS food service staff to be involved.

 

The teacher supervising the lunchroom should remind Joe to wash his hands with soap and water prior to eating.

 

To avoid cross-contamination from the table surface, Joe should be reminded to use the placemat provided.  When a plastic placemat is not available, a paper towel or napkin can be used.

 

BATHROOM ACCESS

Joe should be allowed bathroom privileges whenever necessary and without negative consequences. 

 

It would be helpful to establish a “signal” to alert the teacher when there might be an emergency that would require him leaving the classroom immediately without waiting for permission.

 

CLASSROOM PROJECTS / ACTIVITIES

Products commonly used in the art room will be reviewed to determine that they are gluten free.

 

The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.

 

Joe will be excused from activities that involve working with wheat flour as it can become airborne and settle on all surfaces including in his hair and clothes.

 

All classroom surfaces will be thoroughly cleaned after being exposed to wheat flour.

 

Teachers will require Joe to wash his hands after handling known gluten-containing products (playdough, papier mache, etc.)

 

CLASSROOM CELEBRATIONS / REWARDS

A box of snacks and treats is provided by the family and is to be kept in the classroom. Teachers will notify the parents when the snacks need to be replenished.

 

Teachers will give the parents 24 hours notice of any special events that involve food so that a safe alternative can be provided.

 

FIELD TRIPS / EXTRACURRICULAR ACTIVITIES

Teachers will communicate to the parents if food will be provided as part of field trip.

 

Parents will determine whether food is gluten free and/or provide student with a safe alternative.

 

Parents will have the option of keeping a child home if no provisions can be made without penalty to the student.

 

 

COMMUNICATION

School staff that have regular contact with Joe should be aware of his condition and trained to recognize any signs or symptoms that might indicate a possible accidental or known exposure to gluten.  Joe’s #1 symptom is a drastic change in behavior, so anything unusual should be noted and shared with the parents.

 

The school will insure communication systems are in place to inform persons who need to know  (i.e. substitute teachers, speciality teachers, etc.)

 

The teacher will communicate with parents about upcoming projects that may require alternative foods or materials.

 

If Joe inadvertently ingests gluten, his parents should be notified as soon as possible.

 

Staff will be aware of food “bullying” and notify administration and parents if it occurs or is reported.  Reported incidents will be handled in accordance with the BPS Anti-bullying policies. 

 

EMERGENCY EVACUATIONS / SHELTER IN PLACE

The school evacuation plan will be reviewed to see if provisions need to be included to accommodate Joe’s diet restrictions.

 

Shelf stable meals/snacks (boxed GoPicnic meals) will be provided by the family and stored in the classroom in the event that students need to shelter in place for an extended period of time.  Food will be returned to the family at the conclusion of the school year.

 

CONTACT INFORMATION:

 

Mother:          Cara Xxxxxx           H)  xxx-xxx-xxxx  C)  xxx-xxx-xxxx

Father:           Paul Xxxxxx           W) xxx-xxx-xxxx   C)  xxx-xxx-xxxx

 

Regular Pediatrician: 

Dr. Andrea Reilley, MGH Back Bay

388 Commonwealth Avenue

Boston, MA 02215

617-267-7171

 

Gastroenterologist / Celiac Specialist:

Dr. Dascha Weir, Children’s Hospital Boston

300 Longwood Avenue

Boston, MA 02115

617-355-6058

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Cara - I've heard from others that kids jump to an IEP and lose their 504 if there is a learning issue.  I wonder if that's law or just common practice?


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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