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Posted on: Mon, 01/13/2003 - 3:15am
Rhonda RS's picture
Joined: 02/24/2001 - 09:00

Hi Synthia,
I apologize in advance for this very long post. But since you asked for my help, I take your questions and situation quite seriously. My overall sense after reading your posts and others is that you have little in writing regarding awareness, prevention, training and emergency response to food allergy. You need to create a comprehensive IHP (as part of your IEP) or a comprehensive 504 Plan to address anaphylactic food allergy issues. Until I had exactly what I wanted in place, I would not send my child to school.
Here are some of my thoughts…
Just so you know, Child Find is a national requirement of IDEA and 504 (not specific to just FL) that says that all public school districts must actively seek out and provide services for children who qualify. This means that if you want services for your child under IDEA, and your child qualifies, then you can get them. You are obligated by no law to take services. Since the government provides IDEA dollars, there are lots of preschool programs for IDEA qualifying disabilities. But, since 504 does not, there seem to be no “504 preschool programs.” You do not have to enroll your child in any preschool program that you do not want her in.
Question – How many hours a day is this preschool for little V, and at what time during the school hours will this serviced by offered to V? Is this an all day program?
The entire staff should be trained by the nurse or by the school’s medical consultant. You should make this part of your 504 Plan or Part of the Food Allergy Component (IHP) of your IDEA IEP. It is completely the school’s responsibility to train its staff. The law says that there need only be one person on the premises of public school at all times who is trained to administer the EpiPen. It is becoming more common for all school staff to be trained in EpiPen administration.
Question: Why was the nurse not at that meeting? The nurse is an integral part of creating 504 / IDEA accommodations for food allergy. I would have rescheduled the meeting to a time when she could attend. At all 504 Meetings and IEP meetings, “knowledgeable” personnel must be present. And if they are not, you have the right to call off the meeting and reschedule it.
Regarding any type of peanut products brought into the class: Your child’s classroom MUST be a peanut and tree nut free environment. Period. The crux of the issue is this, you really don’t care about what other parents are doing for their children with peanut allergy, all you care about is what you are going to do for your child with food allergy. What other parents have done in the past and what the district has done for other parents in the past is irrelevant. Your child’s food allergy and reaction response is specific to her physiology. Point out to the staff that peanut products in the classroom puts your child’s life in danger, and the allergen must not be present in the classroom. Peanut and tree nut free classrooms are very common in the U.S.
Regarding the number of people at your last IEP meeting: In the future, be sure to call the business day before the meeting, and ask the principal who will be at the meeting, or ask the Director of Pupil Personnel.
Question: Was that your fist meeting (on a Friday) where they formally acknowledged that your child was covered under IDEA for speech?
After your first IDEA meeting where the district grants you protection under IDEA, the district is suppose to send you all paperwork 10 DAYS BEFORE any meeting, by law, so that you have time to review it. Keep this in mind when you are addressing the speech issues.
You stated in a post that “she does fall under 504.”
Question: Did the school tell you this?
It is not uncommon to have a 504 Plan for food allergy issues, and an IEP for other qualifying disabilities like speech. If the district cannot create a descriptive and comprehensive accommodation plan for food allergy under IDEA, then you need to push for 504 Protection for food allergy issues.
You mentioned IEP, IHP and EHP. As part of a child Individualized Education Plan, there should be an Individualized Health Care Plan of which the Emergency Healthcare Plan is a part. If you are going the IDEA route, the IHP must specifically list out all the accommodations and modifications that must be made to the school environment that will make it as save as possible for V. The IHP should be as detailed, descriptive and prescriptive as any 504 Plan that is a stand alone document.
Still, I am not clear that they have offered you an Other Health Impaired designation for food allergy under IDEA. If they are unwilling to put OHI due to food allergy on the IEP as one of the qualifying disabilities, then I would seek out a stand alone 504 Plan for food allergy. You need to get OHI eligibility in writing. If they do not give you the OHI designation for food allergy, then food allergy issues cannot be part of the IDEA IEP! Remember, if it’s not in writing, then it does not exist.
Question regarding the letter that the principal sent home: Who did the principal send this letter home to? To the whole school? How many kids (about) in this school? How many classrooms are in this school, from what grade to what grade?
The principal must send home another letter to V’s future classmates’ parents stating that the classroom environment is a peanut and tree nut free environment. Period. In the letter you posted, I saw that initially the principal lumps nuts and peanuts together. Parents need to know no peanuts and no tree nuts. (In addition to cross-contamination – 1/3 of all kids with peanut allergy also have tree nut) The principal does not ask people not to bring in peanuts into your child’s classroom, she/he tells them not to. And if peanuts / tree nuts still come into the classroom, and the school does not stop them, then the school’s deference could be considered grounds for discrimination.
In any peanut and tree nut free environment, you must be sure to provide an ample and appropriate supply of snacks for any child who accidentally brings in a snack with peanuts. Teachers must be trained on how to read labels. Your child can have a water bottled. All kids can wash their hands with soap and water after snack. All people should wipe with wipes upon entry. Kids can eat snack on paper plates. All these issues must be addressed in your IHP for food allergy or 504 Plan for food allergy.
I saw that you are going to supply Benadryl for the classroom and nurses station. What about the EpiPens? I would like to see the state law in FL for public school that says that the EpiPen has to be locked up in the nurse’s station. My kindergartener has a red travel fanny pack (with 2 EpiPens, Benadryl Liquid and Benadryl Cream) that is on a high hook next to the classroom door. Wherever she goes, the travel pack goes and is carried by a trained adult. A duplicate pack is located in the nurses office. The travel pack is accompanied by a walkie-talkie on the other end of which is the nurse. The nurse always has the walkie talkie with her. These are just some example of the ways we handle the meds issue in the school context.
Question regarding the note that your husband wrote: Are you planning on having the principal send it off with his/her signature? Anything going home to parents must be from the principal to make it legally binding.
Regarding bringing V. to meetings. Not a good idea, and avoid it. It’s hard for you to concentrate at the very least. Call in all your favors to have a trusted friend or relative to watch V on those meeting days.
Regarding an advocate… Who suggested you get an advocate? Advocates are great who know the IEP process. But be sure that the advocate knows food allergy issues inside and out or he/she could be a negative force in a meeting.
Well… those are my thoughts. I usually don’t write such long posts, but there are many issues here. My little one is calling for me.
Take care,
[This message has been edited by Rhonda RS (edited January 13, 2003).]

Posted on: Mon, 01/13/2003 - 5:17am
anonymous's picture
Joined: 05/28/2009 - 16:42

This thread has been very enlightening!
I'm just starting to get the paperwork for creating a 504 & IEP for Lindsey, as she'll be starting kindergarten in the fall. Wow! I'm worried that I should have started this a year ago!
Does anyone know how I might be able to in touch with Sue (from sunny Arizona)?
Thanks for everything!

Posted on: Mon, 01/13/2003 - 5:52am
Rhonda RS's picture
Joined: 02/24/2001 - 09:00

Hi Lori,
Sue's e-mail is public: [email]hay2lee@aol.com[/email].
ps. 504 & IEP = excellent!
Take care,

Posted on: Mon, 01/13/2003 - 6:44am
anonymous's picture
Joined: 05/28/2009 - 16:42

Thanks Rhonda!!!
I sent an E-mail to Sue.
It would be great to finally meet someone in
Arizona with the same zeal about PA as I have!

Posted on: Mon, 01/13/2003 - 11:16am
synthia's picture
Joined: 10/05/2002 - 09:00

(This Kim AKA D.H. - Little-V's Daddy) First, Thanx Rhonda for your input and help, We *Really* appreciate it, your support (and others on this forum) have given us lots of hope.
First, I'd like to apologize in advance for what is sure to be a lengthy post, and if I don't abbreviate what should be, I'm a high-end programmer but I almost never use any chat or message boards (even though I write some in the 80s) so please bear with me...
I'd like to answer a few of those questions to save Synthia some time:
1st: We are *NOT* sending her into a situation where her life will be in danger. I know (as I wish the school ppl could understand) that we won't get a second chance if they don't get this right the first time, She's so profoundly allergic that she'd die if they make even one small mistake, and we won't get any do-overs, "I'm sorry" won't help, and I (and Synthia too) *Cannot* live with those odds. If we can't be confident in their abilities to force (and enforce) the nut-free classroom, and their abilities to recognize the start of a reaction, and for more than just one person to be ready, willing and able to administer the epi-pen, I'm *NOT" putting her in there (not being gruff to you ppl, just voicing my position, I'm skeered for her too).
I feel that they are trying to bypass the 504 plan and sweep some of the other things under the rug to skirt some of the responsibility and avoid some of the liability. My personal opinion is that she needs the 504 plan regardless of / in addition to any IHP and IEP. Please tell me if I'm wrong, but I feel the more they "sign off on" the more they'll be forced to try to "live up to" ...?
2nd, the school is supposed to be from 8am till 2pm, the school ppl offered 8 to 10:30 (probably to avoid lunch issues), but her speech and educational needs dictate more school time, and her education / speech therapy is why we're sending her in the first place.
3rd: The Nurse was there at the meeting, so was the nurse fill-in (for when she's un-available), but Synthia said that their entire attitude had shifted from what all they *would* do in the 1st meeting, to all the things they *can't* do in this meeting. It sounded to me like some administrator shot some of it down, or that they decided it would be too hard to implement all they previously intended to do, most important of all, that they couldn't (or woudln't) enforce the nut-free classroom (el-lame-o to say the least).
which brings me to your next paragraph: Yes I fully agree with you, I don't give a flyin' peanut shell about what the previous parents settled for, or what they did for the previous allergic kids, they *MUST* address V's individual needs and not lump her in with the others, she's not like them in any way, she has *no* threshhold to speak of, there is *no* comfort zone, it MUST be nut-free completely !
I would like to compare it (to the parents who insist on sending peanuts)to V. bringing in a bunch of rattle snakes to class, they don't bite her, and she's not scared of 'em, but would the other parents fear for their kids lives? would they feel they have the right to demand "no rattle snakes in my kids class" and "doesn't my kid have the right to a rattle-snake-free classroom?", it sounds absurd but it's just like holding a gun to her little head and just waiting for it to go off. If there was only some way for the other parents to understand the fear from our perspective.
Next, Child Find said that she does qualify for IDEA and 504.
As for the letter, Synthia posted the letter they sent home, only to the kids in her class-to-be. I thought that it was too *voluntary*, in fact it used the word 'voluntary' three times, and 'suggested' on top of it. it was almost like saying "some kids are allergic so you might wanna think about not sending nuts in". I wrote the second letter as a suggestion of how it should be worded so as to get the point across that her little life depends on it. I would hope that the school would either sign and sent it as is, or incorporate it into a *real* letter.
They said that Synthia could help them shop for nut-free snacks (and she said she would gladly shop with them). I don't mind even supplying some extras ourselves just to be sure the other kids aren't shortchanged snack-wise, but the nuts have gotta go !
Yes we are trying to supply Benadryl, along with the epi-pens, originally the epi-pens were to be carried in a fanny pack by the teacher, but now she says she can't afford the fanny-pack (we said we'd supply it), and now they can't accept the Benadryl unless it has a doctor's perscription on it...
we have a close freind (one of only 2 ppl i'd trust her with, and the only one who's local) to watch V. for the next meeting, and I'm a gonna take off work to be there too.
Anyway, Sorry again for the book I wrote, I hope I didn't clog the server and choke the pipeline, I *REALLY* appreciate all the support you ppl are givin' to my wife and sweetheart daughter, Love ya all...
Kim, Synthia's D.H. and V's Daddy

Posted on: Mon, 01/13/2003 - 9:27pm
synthia's picture
Joined: 10/05/2002 - 09:00

Just Bumping up for more support.
Love this site

Posted on: Mon, 01/13/2003 - 10:33pm
California Mom's picture
Joined: 07/14/2000 - 09:00

Wow, Kim - that was a powerful post and you have absolutely no need to apologize for the length. Believe me, you got a lot of important information out into what was actually not that long of a post. Your daughter is so very lucky to have both of you as such caring and informed parents - who are going to stick up for her needs and her rights no matter what. We have always needed a doctor's note for the benadryl - but not a prescription. It shouldn't be too hard to get something in writing from the doctor - I'd imagine. Can your doctor give you some help with getting a peanut free class? Do you have articles you can bring in? It's such a shame that your daughter's educational needs are on hold while you have to deal with all this other stuff.
My best wishes to you: I will be waiting to see how this turns out. I know you will get it done; I'm just sorry you have to go through such turmoil. Miriam

Posted on: Tue, 01/14/2003 - 12:15am
synthia's picture
Joined: 10/05/2002 - 09:00

Hello everyone
Just got a call from little v,s school.
They are asking for a open diologe with the allergist
Any comments?
Love this site

Posted on: Tue, 01/14/2003 - 12:52am
Rhonda RS's picture
Joined: 02/24/2001 - 09:00

Hi Lori,
You bet [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Hi Mariam,
I read your post all the time. You are a wealth of knowledge.
Best wishes,
Hi Kim & Synthia,
It’s a long one again. Bare with me all.
Kim, my husband, Mike is a software guy too (he developed and runs our site [url="http://www.allergysupport.org"]http://www.allergysupport.org[/url] – we use our site mainly to provide an organized depository of articles and to rally support for national and CT state legislative issues), and he seldom participates on message boards either, though he does post on our site from time to time. I’m glad to see that you have joined in online. Thanks for answering all my questions. That really helps me get a handle on what’s going on.
Kim, read these two articles, I think they will help you and S.
IDEA v. 504: [url="http://www.allergysupport.org/index.php?contents=rhondadocs/Primer.htm"]http://www.allergysupport.org/index.php?contents=rhondadocs/Primer.htm[/url]
504 Outline: [url="http://www.allergysupport.org/index.php?contents=rhondadocs/Outline.htm"]http://www.allergysupport.org/index.php?contents=rhondadocs/Outline.htm[/url]
On a safety level, I’m glad to see that you are holding off on sending V. to school. I agree. It’s too risky at this point. On a tactical level, I believe it is a good decision as well since by not sending V. or signing anything, you have not formally agreed to the IEP they have created which roles V. food allergy needs into an IHP.
I agree with you Kim about the school trying to bypass a 504 designation. When I first responded to Synthia, I got the impression that they wanted to give you an OHI designation under IDEA. And that would have been okay. But now after your post it is clear that they want to offer you an IHP with no OHI disability designation to back it up.
I wholeheartedly think a 504 Plan for food allergy and a separate IEP under IDEA for speech is the way to go. See the post I made on the other thread about this point:
I have always supported an IHP/ECP as part of a 504 Plan rather than a stand alone IHP.
Now, the question you have to ask yourself is, “why”? Why do they not want to go the 504 route. This will help you to strategize. Believe it or not, most schools do not know where to even begin writing a comprehensive 504 Plan for a child with severe food allergy. This may be a reason. They are intimidated by it. They write them for ADHD when the modifications and accommodations have to do with educational performance and learning issues. However many don’t know the other side of 504 which simply addresses the learning environment issues. They may have always given kids with food allergy a stand alone IHP, and no parents protested. I’m just trying to give you some angles to think about. So I think that the school has not done right in the past by the other kids with peanut allergy, and they are afraid to admit this. You will have to lead the way, and show them how it is done.
Question: What group of people or organization do you define as is “Child Find”? Do you have written documentation of Child Find stating that V. is eligible for protection under 504. I’m trying to get a sense of who these people are and their connection to the Director of Pupil Personnel for your school district and the principal of your school.
Got it…8:00 to 10:30 for V. I think it’s better to start of with this smaller amount of time anyway. Got it…the nurse was there.
Question: Is this fill-in an RN as well? Is she formally trained in anaphylaxis recognition and EpiPen administration?
The law does say just one person has to be trained. The issue is that the teachers’ unions, the American Federation of Teachers (AFT) and the National Education Association (NEA) have been able to bargain out EpiPen training requirement for public schools. This will be a hard issue to get around. But, regardless of whether or not the rest of the staff is willing to administer the EpiPen, the entire staff must be trained in recognizing the symptoms of anaphylaxis and the emergency response protocol. You can certainly push and win that one.
Ya know Kim, I was skeptical about how that meeting was going to go. I did not get a good feeling when S. said that 10 people were at the meeting. It sounded like an ambush to me. And the fact that the principal sent home the “voluntary compliance” letter is alarming. Again, I think this was a tactical move on his/her part – (administrators are also politicians you know). You can fix this. In the new letter that goes home, the principal can simply state that : “Due to the fact that this child is contact, inhalation and ingestion allergic to peanut and tree nuts, and after consulting knowledgeable parties about this issue, we are requiring that this classroom a peanut and tree nut free environment, effective immediately.” This will allow the principal to save some face.
I think that Cynthia should insist that she do all the shopping for the preschool. I use to do all the shopping for our preschool (total of 51 kids for all three classes of 3 and 4 year olds). I use to give up my Sunday for a year, but it was well worth it.
Okay…You need a plan. I don’t know what you have done in writing up to this point with the 504 Coordinator, but sometimes it’s necessary to back track so that you are on solid legal footing. This is what I would do. You need to go by the book.
******From this point forward, you need to separate all IDEA IEP Speech meeting from 504 Food Allergy Meetings. Okey Dokey. That means, you will have to refuse to discuss food allergy issues at your IEPs for speech, and that you will insist on having a separate meeting for food allergy. Even if the meetings are broken up by a 15 minute break, that’s fine. Additionally, the speech therapist does not need to attend a 504 Food Allergy Issues Meeting. And the nurse does not need to attend and IEP Speech / Development Meeting. The classroom teacher and principal should be at each.
1. You know that you already have an IDEA designation for speech / development. So nothing to do there.
**Getting Your 504 Designation Formalized for Food Allergy**
1. You get a copy of V.’s CAP RAST Results
2. You get a carefully crafted letter from your doctor that includes all the major verbiage of 504. Tell your doctor that you are simply asking him/her to state the facts. The doctor simply is putting in writing what he and you already know. The language of your doctor’s letter is crucial. See this outline that I used that worked for us, Ryan’s mom and lots of others.
3. Write a “Request for Protection under Section 504 Letter” addressed to the Section 504 Coordination (also called the Director of Pupil Personnel).
4. Get a written statement from “Child Find” stating that V. is protected under Section 504.
5. Send the CAP RAST Test Results, Doctors Proof of Allergy Letter, Child Find Statement and your Request for Protection Under Section 504 Letter to the 504 Coordinator.
Kim up to this point, you have sent nothing to the 504 Coordinator in writing regarding protection under Section 504. And it is the 504 Coordinator who is legally the person that the law requires addresses issuing a 504 Designation.
Remember, if it’s not in writing it does not exist.
Furthermore, the school nurse and the school principal do not have the legal authority (unless one of them is the 504 Coordinator – which I doubt) to deny you 504 Protection for V. So, start at the top. Once you have presented them with you’re your “packet of letters” it will allow the principal to save face when she/he has to write a new letter to V. future class.
It’s difficult to work backward, but many parents approach school districts with the belief that what they want and need will be met with open arms. What you are going through has happened to many parents on these boards. Trust me, once you start putting your request in writing, and start separating the 504 and IDEA issues, they will realize that they cannot push you around.
Next, the 504 Coordinator or the principal of the school should contact you to say yes, or no to 504. Then, you tell them that it is customary in our community to put together a 504 Plan Proposal. When you get to that step, we’ll help you out there too. So, you are looking at a month probably before these issues are resolved, but I really believe this will all be worth your time and efforts in the long run.
Best wishes,
[This message has been edited by Rhonda RS (edited January 14, 2003).]

Posted on: Wed, 01/15/2003 - 1:30am
synthia's picture
Joined: 10/05/2002 - 09:00

Hello every one
The school called yesterday and ask if I would sign a release for a open diologe for the school nurse and doc.
Any IMO?
Love this site


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