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VERY well said, Rhonda.
I don't mean to be critical of Mary Kay or anyone else here because we're entitled to our own opinions. However, IMO it was very disconcerting that one would be on a state advisory panel for children with disabilities and not consider a food allergy to be one. It really bothered me and I had a hard time falling asleep the night after reading that post.
In fact it still troubles me days after reading it. Almost scary (IMO).
[b]Hi MB,
I'm glad I can assist. Thank you for the compliments [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
I am anticipating that you will get into your food allergy / asthma designation meeting and the SD will say... "Well, we've looked at everything, and we don't think cub qualifies for IDEA...Now let's see if Section 504 applies." This is the reason you will have provided them with all the 504 documentation.
Now, if you want to really hedge your bet, you can use peer pressure which we've found very useful time and time again in CT:[/b]
Just interrupting the thought for a sec.... (hubby says I interrupt a lot ---- he does too ---- we're just always interrupting each other, so he's become a real courtesy and protocol rules kind of guy about it. [i]OCD almost.[/i] ---- Me, I just keep talking. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img])
..........What confuses me is why would I have to "hedge my bet" in the case of a 504 and not an IEP OHI? Has it got something to do with funding to provide accomodations? I mean, [i]money (or the lack of) isn't supposed to be an issue, yes?[/i] I take that statement at face value. [i]Maybe I shouldn't?[/i]
[b]Reach out to your network of moms, and see if you can find three towns that surround your town where kids have good 504 Plans for food allergy (and asthma - asthma may be tough to find since most parents don't know asthma qualifies under 504). Get these parents to share the plans with you. Ask if you can share their plans with your school (with all names removed of course).[/b]
Hm. Problem. [i]I don't have a network of moms.[/i] My oldest cub has been out of school for a year and a half. Due to some mitigating circumstances, [i]he really doesn't have any close friends in this neighborhood[/i] either. We're kind of a loner group. Not saying this in a "feel sorry for me way". No, not at all. [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Just stating a fact. Oh, I mean, we're going to the block party next month..........WAIT!!!!! [b]THE BLOCK PARTY!!!!!!!![/b]
Time to make some contacts while watching the firewalkers and flame eaters. [i](Hawaiian Theme). [/i] We're really quite social creatures when given the appropriate opportunity and setting. Maybe even a little obnoxious. [img]http://uumor.pair.com/nutalle2/peanutallergy/tongue.gif[/img] [i]Hang Ten, and give me a drink with a little umbrella.[/i] I'm wearing a red floral wrap..........
I mean, when I tried to do something similiar a few years ago, people were either very tight lipped, (FERPA?) or [i]didn't have a 504 or an IEP or anything similiar,[/i] or just didn't want to reveal it to me. People can be really cagey about their children's needs. Never been to a support meeting in my area. Maybe it's time I should.
I know my youngest cubs early education class had quite a few children with LTFA. Problem is, most rode early education bus. I never had an opportunity to talk to them. Or, on field trips, which were combination class and quite large.........I never knew how to introduce the subject. [i]The atmosphere on those trips was very lighthearted[/i] and we were still shellshocked from our oldest cubs experience in school. Admittedly, [i]I didn't want to rock the boat.[/i] Things were going so well for my youngest cub.
I will say, tho, that I was quite pleased with how [i]that[/i] school in the district addressed food allergies. (at least from what I could see, and what the instructors verbalized to me.) I remember mentioning that school in a letter to the district (after a phone call) re: the difference between the two schools wrt LTFA. I mean, [i]it was the same district/co-op.[/i]
[b]This strategy will assist the district in seeing that other districts are doing the same kinds of things you are asking. The SDs cannot share the plans or even give you the names of kids because of FERPA.[/b]
similiar to "HIPPA" in healthcare?
[b] So, you will have to rely on your mom network.[/b]
Sigh. I'll try to make some friends.
[b]I'd start working on this piece since it will take time, and you'll probably have the plans by the time you need them should you run into resistance about the accommodations and modifications you want made.[/b]
[i]despair[/i].
My bet is hedging on a Block Party.
Thank you tho, Rhonda, it's not you that is causing my bleak outlook right now, it's just that i feel painted into a corner. And I'm holding the brush. Again, my family is quite happy being the loners we are, it's just that the system isn't based on that. Guess I'll just have to count on my innate resoursefulness and talkie type of personality. I can be quite irritating, and sometimes, people give me the information I want or item I request just to shut me up. That or they [i]may[/i] really enjoy talking to me and the results are similiar. [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
(007 spy music.............trombone solo)
[This message has been edited by MommaBear (edited July 27, 2004).]
[This message has been edited by MommaBear (edited July 27, 2004).]
Hang in there Mommabear you will work it out!
Dh and myself are from the olden days,we take people at there word until proven other wise.
Hi Rhonda RS!!
Love this site
Synthia
Quote:Originally posted by ryan's mom:
[b]VERY well said, Rhonda. [/b]
I meant to say : "VERY well said" as well [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img]
Quote:Originally posted by ryan's mom:
[b]In fact it still troubles me days after reading it. Almost scary (IMO). [/b]
imagine how I must feel living in Illinois................ [img]http://uumor.pair.com/nutalle2/peanutallergy/wink.gif[/img]
Quote:Originally posted by synthia:
[b]Hang in there Mommabear you will work it out!
[/b]
Hi Synthia!
God doesn't give me what He doesn't think we can handle together [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
Hi MB
I wrote hedge your bet because as much as we prepare and hope for the best, SD's often try to back out of giving a disability designation upon the advice of the SD's lawyer when parents get into their disability designation meetings. I just want you to be ready, so you can turn things around quickly should this be the case.
Should you get into your meeting and this happens, you can offer the school district other 504 Plans of other children from other districts to show them that they are not alone in addressing food allergy / asthma issues in a methodical way.
I don't think it would be a funding issue. It's more about what the SDs lawyer tells the lead person of the 504 Team (or PPT members). You are going to have to prove that learning is affected to get the OHI IDEA designation. (I.E. Cub had an allergic reaction and had to leave school on X date.) Unless you have meticulous documentation of reactions at school, I believe it's difficult to achieve the OHI, but not impossible. I would like to see you prepared to pursue a 504 designation should the need arise.
Also, based on the fact that you mentioned Due Process from your last go at this, I would be ready for various permutations of events. If you have 504 Plans to show them, they will be more likely to accept what you are asking.
Yes, FERPA is to education as HIPPA is to healthcare.
[url="http://www.ed.gov/offices/OM/fpco/ferpa/"]http://www.ed.gov/offices/OM/fpco/ferpa/[/url]
Yes, reach out in anyway you can: church, support groups, library etc. Ask around. Perhaps a support group in your area would be the best way to start. This is one of the last pieces of your strategy for getting the designation, and it takes time to make these contacts.
So you'll be sending in to the 504 Coordinator/Director of Pupil Service:
1. Carefully crafted doctor's letter. I've bumped up my letter to my doc which states all the pertinent information. The docs letter is critical and can make or break your getting the designation. The doc is a "knowledgeable individual under the law."
2. Your request letter for disability designation meeting and who you want to be there.
3. Article about Nathan Walters
4. OCR Hidden Disability Document
5. I also sent in our CAP RAST Test Results.
___________________________
After you do the list above, I'd have ready for the SD should you need them:
a) Three 504 Plans for food allergy from other towns near you
New thoughts... add
b) Print off the Mass BSEA Peanut Free Classroom document: [url="http://www.allergysupport.org/rhondadocs/bsea.pdf"]http://www.allergysupport.org/rhondadocs/bsea.pdf[/url]
c) Print off the Mass BOE Managing Severe Food Allergy Document
[url="http://www.doe.mass.edu/cnp/2002/news/allergy.pdf"]http://www.doe.mass.edu/cnp/2002/news/allergy.pdf[/url]
As long as you are willing to work for this, I am willing to assist. I'm sure there are a number of other parents out there reading these posts.
Block Party sounds great!
Hi Ryan's Mom! You've made such incredible strides. Thank you! Nicole is just lovely! Katie loves being a big sister. Hope you and yours are well too.
Hi Synthia. Hope you are well. You went through this whole OHI v. 504 Designation issue, right. What did you end up getting?
Hi Mary Kay, if you wanted to talk about your child's disability here, that would be okay - really. We can all learn from each other. All disabilities count on the pa.com boards in my book.
Take care,
Rhonda
[This message has been edited by Rhonda RS (edited July 27, 2004).]
You went through this whole OHI v. 504 Designation issue,right. What did you end up getting?
Rhonda RS to answer your ?
Look in this thread Let me know your comments in that thread,Thanks
This is it,Iam scared to death for Little v in the schools thread.
Quote:Originally posted by Rhonda RS:
[b]Hi Mary Kay,
Are you serious or you just trying to get us all riled up here on pa.com?
Nathan Walters, an eight year old, died a few years ago because he ate a small amount of peanut products on a fieldtrip at school. The school knew he had severe allergies and still gave him the lunch that killed him. Nathan's father, Rick, told me that he knew nothing about Section 504 or IDEA at the time, and had he known, things might be different today. Disability designations can help protect our children from death.
FAAN cites over 150 people die each year due to allergic reactions.
Of course children with life-threatening allergies deserve disability status. The U.S. Office for Civil Rights lists "allergy" as a hidden disability. It's presented along with diabetes and epilepsy. Severe food allergy affects the life system of breathing, as well as cardiovascular, skin and respiratory: It meets the definition of disability under the Section 504.
I am surprised and disappointed that you think only some disabilities make the cut of being real since you've been chosen the Illinois State Advisory Council for the Education of Children with Disabilities. Parents of children with food allergy and asthma in your state are now at a disadvantage. If you truly are a child and parent advocate, you should advocate for all children with any disability not the just the ones you think are real.
My daughter almost died in my arms when she was 5 months old due to a severe allergic reaction - she stopped breathing. If that's not real, I don't know what is.
In a national advocacy seminar I attended (Partners in Policy Making), I participated in classes with many individuals and parents of children who had various disabilities: Down Syndrom, Spina Bifida, CF, MS, Mental Retardation, Hearing Loss, and the list goes on. I was chosen for the seminar specifically because my child has severe food allergy. On the one hand, a child with food allergy who has no other disability does not face the challenges of those who have the disabilities I mention above. However, each and every time our children eat, they could die as a result of ingesting the wrong food. Due to this reality, they must be protected from harmful allergens that could kill them. We must focus on prevention and emergency response.
I wish you the best in your efforts to support your daughter and individuals with IDEA disabilities - I'm sure your intentions are good. I can only hope you have a change of heart, do some research and learn more about how Section 504 and IDEA apply to food allergy and asthma. I can only infer that you have become entangled in the institution's dogma that perhaps you initially set out to change.
Best wishes,
Rhonda
[This message has been edited by Rhonda RS (edited July 26, 2004).][/b]
Thank you so much for your extremely well "spoken" thoughts on the matter. The only thing I could come up with (in my own head) was: "with friends like these who needs enemies?". [img]http://uumor.pair.com/nutalle2/peanutallergy/eek.gif[/img]
[img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img] Miriam
Quote:Originally posted by Rhonda RS:
[b] We can all learn from each other. All disabilities count on the pa.com boards in my book.
[/b]
[i]Completely Understand.[/i] [img]http://uumor.pair.com/nutalle2/peanutallergy/biggrin.gif[/img] [img]http://uumor.pair.com/nutalle2/peanutallergy/cool.gif[/img]
Hi MB,
Gary got a hold of the entire "Letter to Zirkel - 1993," from OCR and sent me a PDF, and I've posted on our website.
[url="http://www.allergysupport.org/rhondadocs/Zirkel.pdf"]http://www.allergysupport.org/rhondadocs/Zirkel.pdf[/url]
The gist of the letter is that the "reasonable standard" used for ADA does not apply for Section 504 and schools. You could present a copy of this letter to your school, should the district say it only needs to provide what is "reasonable." OCR clearly states this is not the case. Again, an SD's lawyer may use the argument that I stated (use ADA law saying they only have to provide what is reasonable) and cite some case law to support their argument that they do not have to provide what is reasonable. However, I've found most of the SD's lawyers are not that bright. I think if you presented this letter, it would make the district back down from a "we only have to provide what is reasonable" argument.
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