FAAN requesting 504s and IHPs

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You may have noticed in FAANs last newsletter a blurb that FAAN is looking for 504 plans and IHPs. I had reason to talk to Chris (at FAAN) recently and he mentioned that he's received only a handful. Just thought I'd bring this up in case anyone missed their small notice. Mail to FAAN "attention Chris".

Gail

On Feb 13, 2003

Gail! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Come stai!

Did Chris from FAAN happen to say what he plans on doing with them?

Why this interest...now...

How are things going by the way?

Take care, Rhonda

On Feb 14, 2003

Hey there, Rhonda! We're doing great... thank you for asking.

I don't know why the interest now. I wondered that myself when I saw the extremely small notice in the newsletter. Chris asked me why I thought the lack of response. My thoughts were that the request could have been missed and that it didn't address any questions we parents have about confidentiality and how FAAN would use our documents. I suggested he make another plea (that addressed these concerns), and also put it on their website.

Maybe they are getting ready to really look at this? I have been sadly disappointed with FAAN in this particualr area.

Are you thinking of getting involved in this, Rhonda? I hope so! You have so much to offer them.

Gail

P.S. I'm just curious, did FAAN ever notify you of your nomination for an award last year?

On Feb 16, 2003

Hi Gail! I am disappointed too.

No FAAN did not notify me. Thank you though.

I won't be contacting FAAN regarding the school issues. If they were to approach me, I would assist them.

I'll send you an e-mail with some detailed thoughts. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Rhonda

On Feb 16, 2003

I would just LOVE to see what river has to say about this! LOL! At any rate, given my feelings re FAAN (re schools), I wouldn't be submitting anything to them.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Feb 17, 2003

Hi Cindy! I responded to you on the "504 Binding Doc" thread. -I have not been following River's threads. What is her take on the issue with 504s and FAAN?

Has FAAN helped you at all in Canada?

Cindy, what is your accommodation plan called in Canada? I don't know much about Canadian issues (my husband's mother is from Quebec though [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]) Take care, Rhonda

On Feb 17, 2003

HI Rhonda, I find FAAN's request for 504s more than a little disturbing. Now, I think that I understand what the 504 is about and it's a very personal and private matter between the school and the parents, as would be an IEP, (Individual Education Plan.) To request that people send them these highly private documents is highly suspicious in my mind and completely inappropriate. The lack of professionalism is appalling to me.

Of course I do not trust FAAN at all, as I would not trust the Heart and Stroke Foundation if they were receiving funds from the cigarette companies and tobacco farmers.

I would advise that people not share this private information with FAAN---I believe that no good can come of it.

On the Main Discussion board you can find the newest thing I've dug up under the thread American Peanut invasion in Canada. Apparently Dee Dee, (as in Dee Dee the NPB peanut farmer executive, who is said to have had 'conversations' with the 48hours producers, although has been denied as the truth by 48hours), has been 'wining and dining'a couple of Canadians who are in the fore front of peanut allergy research and PR. I know they'd say it was all innocent but....

On Feb 17, 2003

Thanks for sharing that, river. I wondered why there wasn't more enthusiasm about this topic. I was envisioning a library collection of IHPs and 504s that could be used as models by members in process of creating their own plans. I guess I'm naive as I wouldn't mind sharing my documents with FAAN if it helped another family. I have shared them (copies of originals with names blackened out) with others here on this board.

Anyone... how could FAAN used them negatively? I have not sent mine to them yet and I'm questioning if I should. Can people elaborate on this?

Gail

On Feb 17, 2003

I guess it depends on whether or not you trust FAAN. I simply cannot trust any organization with such a financially significant relationship with the American peanut industry. Even if they have 'good intentions' (alas the path to Hell), they are still sleeping with the 'enemy', (I will call them that because I have never seen them act otherwise.) Who's to say what FAAN may blurt out in the throws of passion.

How could the 504s be used against the children they are meant to protect? Possibly by FAAN sharing that information, (directly or indirectly), with its financial backers who have a very obvious agenda to encourage and lobby for continued and increased comsumption of pb and peanut products in the public schools.

On Feb 18, 2003

river, I knew your opinion would be valuable in this thread. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

RhondaRS, although some Canadian PA parents have written school plans in place for their children, it is actually not common. Having said that, I do have to say that there seems to be a wave of PA parents in Canada now having written school plans implemented with their school boards. Why? Because the school boards are not adhering to school board policy re anaphylaxis.

In Ontario, Canada, where I live, each school board basically has the same policy re anaphylaxis in the schools using the Anaphylaxis Handbook. Because this is quite comprehensive and gives a PA child the *right* to a "peanut free" classroom, we basically shouldn't need written school plans. We're very different than in America, although not, apparently, if you live in British Columbia.

No, we're pretty good "up here" as far as policies already in place in the school system to deal with anaphylactic children and for the most part, we don't need written school plans. It is totally different than having to have a 504 Plan in place for your child to enter school in relative safety. In Ontario, we have that right, without any paperwork coming from home at all.

Hope I answered your question okay.

Having said that, and realizing my written school plan is a totally different thing (oh, also it is not a legally binding document as the 504 Plan is) than a 504 or IHP, I would NOT share my information with FAAN either. I'll share my information here, with other PA.com members who want to look at my son's school plan, but no, given the information I have read here about FAAN, I wouldn't be sharing it with them.

Basically, my stance is the same as river's but I can't word it as effectively as river can. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Feb 18, 2003

I never noticed the request in the FAAN newsletter. I'm surprised I missed it; it must have been quite small. I would like to know why they want them. I have found FAAN to be a very useful resource in getting "credible seeming" information to share with our school. I don't like their stance on bans, however. I would consider sharing Leah's 504 if I felt some good could come of it. Miriam p.s. Which newsletter was it in?

On Feb 18, 2003

California Mom, you said, I have found FAAN to be a very useful resource in getting "credible seeming" information to share with our school.

I totally agree with that. I loved it when I got their newsletters and could give them to Jesse's school. I also participate in the BE A PAL program each year. Each child in Jesse's class gets a certificate and a sticker and I have found that really empowering for young children.

Best wishes! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

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On Feb 18, 2003

California Mom,

I believe it was in the last one newsletter. I didn't save mine to refer to, but I think it may have been on the back cover? Just a 1 or 2-liner.

I'm still mulling this over...

On Feb 18, 2003

Just jumping in here with my 2 cents that tobacco companies funding the Heart & Stroke Foundation is a totally different kettle of fish. The Peanut Council is funding research toward a cure for peanut allergies - isn't that what we want as well? We're both working toward the same goal - show me the money. The tobacco companies don't have a hope in hell of "paying off" medical staff to say that their product is safe - it's deadly poison, for everybody, end of story. Peanuts are not deadly to everybody, just a small (but vocal!) part of the population. Not an apt comparison.

Now, Gail and others - [i]why[/i] does FAAN want these 504s? What purpose will they serve? I don't think that's been answered yet. What will FAAN do with them?

Carolyn

On Feb 18, 2003

As Carolyn was posting, I sent this e-mail to Chris Weiss at FAAN:

"Hi Chris,

I spoke with you last week re a health form and waiver I received from my local Girl Scout Council... and our conversation shifted to FAAN's request for IHPs and 504 plans. I would very much like for others to benefit from my daughter's IHP, but I am having some second thoughts about how our document could be used. Would you please answer some questions for me?

1. What is FAAN's purpose in collecting IHPs and 504 plans? 2. How (specifically) will they be used? (E.g. reviewed by a committee, kept on file to share with members on request, etc.) 3. What precautions will FAAN take to a.) ensure the member's anonymity and b.) maintain their confidential medical information? 4. Will FAAN contact any individuals, organizations, or schools identified in our documents? 5. Who will have access to the actual/original documents? Who will have access to the information gleaned from them?(e.g. will the data be pulled off and shared? will the information be reviewed by any group? MDs? will the information be shared with members who request model plans?) 6. When your investigation is completed, what will happen to our document? Will it be destroyed? kept on file? 7. Will FAAN report any findings to its membership? If so, when could we expect this report?

Thanks, Chris. I hope you understand that our documents are filled with sensitive and private information about our dear children. While I truly would like to assist others in the development of their own plan, I don't want that to occur at the expense of my own child. We have worked very hard to achieve our present situation at school, and I don't want that compromised in any way. Can you appreciate where I'm coming from?

Looking forward to your response.

Gail W"

I'll post his response as soon as I get it.

On Feb 18, 2003

CHANT: Go Gail...Go Gail...Go Gail. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Looking forward to Chris' response. Rhonda

[This message has been edited by Rhonda RS (edited February 18, 2003).]

On Feb 18, 2003

Thanks Gail. I also look forward to reading FAAN's reasons behind this request. As a natural optimist, I'm hoping the for the best!

Carolyn

On Feb 18, 2003

Thanks for the encouragement, you guys.

Gail

On Feb 18, 2003

Yes, Gail - wonderful work. I know you'll keep us updated... [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Miriam

On Feb 21, 2003

Time for an update. Chris (FAAN) got back to me right away. Here are his responsees to my questions:

1. What is FAAN/s purpose... I just want to get a general sense as to the modifications schools are making for food-allergic students. For example, if, on 90% of the plans I look at, the schools have created a peanut-free table in the cafeteria, then this gives me a pretty good sense that this is something that parents can ask for.

2. How specifically will they be used? These, I assure you, will only be used internally by myself. The vast majority of phone calls, emails, etc. that FAAN gets regarding 504s come thru ME. I just want to be in a better position to advise people when they contact me.

3. What precautions will FAAN make to ensure anonymity...confidentiality of medical information? I would never, ever, give out anyone's name, the name of a child, school, teacher, nurse, etc. As far as I'm concerned, you can simply black out all identifying info on the forms. It is irrelevant to my analysis.

4. Will FAAN contact any individuals, organizations, schools identified on the forms? No.

5. Who will have access to the actual forms...? Again, see #s 1 and 2.

6. When your investigation is completed, what will happen to our document? They'll be kept on file. Again, however, feel more than free to black out your identifying info. That way, nobody will ever know that a particular document came from you.

7. Will FAAN report any findings...? FAAN will not report anything because this is not a formal, scientific method of collecting data. Therefore, there is an inherent air of unreliability involved. You may be interested in knowing, however, that we might be involved in a formal study soon involving school principals. The purpose of the study is to show that the # of students with food allergy has increased over the past five years. I'd be more than happy to keep you posted on this if you'd like. Our goal is to have it published in a reputable journal.

In closing, please do not do anything you don't want to do. Believeme, I don't mind."

Just FYI, I refered Chris to Rhonda's website and he was, of course, very impressed. I think he (and all staffers at FAAN) should be knowledgeable of her fine work and refer FAAN members to it. In fact, I'd like them to post a link to her website. FAAN is lacking in their 504 and IHP materials, and if it hadn't been for Rhonda and PA.com, I'm not sure where I'd be right now. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

I'll let you know what Chris thinks about that idea.

What do you all think of his response? Anyone sending in their plans?

Gail

On Feb 21, 2003

Sorry, I must have missed any references to Rhonda's site, I didn't know she had one - can you post the link again, please?

I like the idea I'm getting that FAAN is looking at actual 504s to get a realistic picture of what is going on in the U.S. in schools. Often, advocacy groups take a lot of "expert" pyscho-babble as gospel and forget that their theories and recommendations sometimes have little to do with real-life situations. So I have to say I approve. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Carolyn

On Feb 21, 2003

Hey Carolyn,

No you didn't miss it-- it was in other correspondance with Chris. The link to Rhonda's site is [url="http://www.allergysupport.org."]www.allergysupport.org.[/url]

It is outstanding and I really believe FAAN must make its members aware of this resource. Check it out. Don't you think FAAN should link it?

Gail

[This message has been edited by Gail W (edited February 21, 2003).]

On Feb 21, 2003

Wow! I certainly do think FAAN should link it! What an amazing resource and compliation of excellent info. Kudos kudos kudos!!!! It's definitely bookmarked. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Carolyn

On Feb 21, 2003

Hi Gail, Thanks for following up with FAAN. This gives us a much clearer picture of their intentions.

Rhonda, Great job on your website!

Andrea

On Feb 21, 2003

Finally got around to reading this post. Great work, Gail! Absolutely wonderful web-site, Rhonda! Wanted to tell you that I had already sent my 504 to Chris @ FAAN when I saw it in the FAAN newsletter since I did not have a problem w/it. He sent me a very nice letter acknowledging the 504's receipt & assuring confidentiality for me & my school. I think he genuinely wants to help us.

------------------ Stay Safe, Fran

On Mar 9, 2003

I was hesitant at first to respond to this thread, because my impression was that, although FAAN does distribute some very helpful and informative information, their support on classroom peanut bans was definitely lacking. Each case is really very individualized, and I feel FAAN was not helpful at all in this area, actually detrimental in my case, so I didn't use their materials or seek their assistance. This was my impression.

The fact that they are now requesting 504's to review is a little unnerving to me, as I'm still not sure they would support classroom peanut bans in individual cases. The fact that some schools have indicated that FAAN does not support a classroom peanut ban necessary for certain individuals, thereby insisting a peanut-free classroom is not necessary, goes against what I believe is important for some children.

Even though FAAN has stated why they want these samples now, in the back of my mind I worry somehow these will be used against us in a legal way.

[This message has been edited by ryan's mom (edited March 09, 2003).]

On Mar 9, 2003

I missed this entire thread the first time around, as we were on vacation when it appeared. I'm happy to see FAAN pursuing this. It's also great timing for us, if we decide to go ahead with some sort of standardization of policies and procedures for dealing with food allergies in schools.

BTW Rhonda, I'm simply blown away by your site. It is extraordinary! Pat yourself on the back, girlfriend! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]

Amy

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