Food Allergy Support

Discussion Boards => Schools and Food Allergies => Topic started by: LinksEtc on October 17, 2014, 09:45:35 AM

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Title: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: LinksEtc on October 17, 2014, 09:45:35 AM

Tweeted by @nonutsmomsgroup



"Parents ARE the Change Makers"
http://www.gratefulfoodie.com/protecting-students-with-food-allergies/

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FREE Webinar:  How Parents Can Change Laws to Protect Students with Food Allergies presented by Kids With Food Allergies (KFA) – Division of the Asthma and Allergy Foundation of America (AAFA)

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I am honored and excited to share that I will join Charlotte Collins, JD and Vice President of Policy and Programs for AAFA and Larrissa Kaczaniuk, Advocacy and Outreach Manager for AAFA as we explore the possibilities for 2015

https://www4.gotomeeting.com/register/737125367

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 17, 2014, 09:56:59 AM

Just adding details as to that webinar / meeting announcement:

How Parents Can Change Laws to Protect Students with Food Allergies

Tuesday, October 21, 2014 1:00 PM - 2:00 PM EDT

Want to attend if can possibly squeeze into schedule!!!

Anyone else?

PM me if you'd rather!!

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: daisy madness on October 17, 2014, 12:25:42 PM

I will not be able to attend live.  Will a recording be available at a later date?

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: devnull on October 19, 2014, 07:14:09 PM

Whoever attends I have a small request. Can you post here who the named sponsor is?

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 20, 2014, 03:45:14 AM

I believe I read that the named sponsor is Mylan.

Am going to see if I can find that again.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 20, 2014, 03:46:24 AM

From the info on the "Go To Meeting" link in opening post:

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This webinar is made possible through a sponsorship by Mylan Specialty.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: devnull on October 20, 2014, 11:15:28 AM

I'm going to make a prediction, one I hope proves very wrong.

I predict that the bulk of what they term advocacy will be code for increasing stock epinephrine and how you can organize to help strengthen or increase stock epinephrine combined with some light mention of avoidance or other tiptoe around actually calling out food use as a barrier.

Increased call for stock epinephrine will be aimed at mommy bloggers, the marketing tool of the moment, who often receive institutional support such as sponsored trips. http://mashable.com/2012/05/08/mommy-blogger-infographic/

The mommy blog advocacy for increasing stock epinephrine and reviews of novel "free of" foods or other complementary lifestyle products in conjunction with the attention from institutional support from private industry will be high profile and remain highly visible as the highest form of acceptable advocacy. Any criticism of this model will be met with group disapproval because this is accomplishing something that saves kids. Every use of an EpiPen is heroic in the news where prevention through strict avoidance will never be mentioned, nor the use of food questioned.

Actual allergen management through removal of a specific allergen or removing the unnecessary use of food will be either downplayed or deemed ineffective through vague mentions of studies on contact reactions that overgeneralized beyond study parameters on an entire population. Parental anxiety and quality of life may be mentioned as a problem in a manner that suggest causality rather than result.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: CMdeux on October 20, 2014, 01:09:14 PM

I suspect that you're right. 

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 20, 2014, 02:09:45 PM

Does a Webinar have a shut up mute button to be used on those participants who won't stop asking questions about PREVENTION and RISK MITIGATION rather than about allergic reaction response (AKA epi injection and 911-medical prof response)?

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: devnull on October 20, 2014, 02:37:17 PM

Most webinars are automatically muted but for scheduled speakers. Citrix has a hand raise function that allows you to signal you have a question that you type through your pane. A moderator usually filters the questions. All assuming they're using Citrix GoToWebinar, of course. A smart and tactful way to pose a question likely to be presented to the group and answered is to know the presenter's previous work and ask a question based on established work or statements. The other way is to wait until the end when a presenter volunteers his or her contact information to send related follow up questions. Sometimes the presentation isn't as key as being able to contact later with related questions not covered during the group time.

I should add: I would think it's absolutely fair and true to position yourself as a leader of an advocacy community yourself, whose membership spans a wide variety of professionals. Your leadership in advocacy focuses on an oft overlooked portion of anaphylaxis management based solidly on ADA where barriers to access are addressed as they present. With this disability allergen use is often the barrier in need of accommodation. You represent a community that is listed as a resource on Wrightslaw. That perspective, which is accurate, puts you as a fellow leader in advocacy in the company of other leaders who is deserved of dialogue and exchange.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 09:12:07 AM

 :smooch: :smooch: :smooch:

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 12:16:00 PM

. . . at 15 minutes in, focus seems to be stock epi in schools . . .

will report back as I can . . .

(there will be link in a few days for the webinar)

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 12:20:20 PM

Unveiling AAFA's "Action Center" . . .

aafa.org/engage

There will be clickable ways to send messages (to legislator) and assist in advocacy THROUGH that web page . . .

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 12:26:46 PM

Lost connectivity with Caroline Moassessi (Nevada) so we may not get to hear her.  Darn.  Really wanted to hear her presentation!

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 12:50:44 PM

Caroline on via phone . . . outlined COMMUNICATION and key features of that.

COALITION formed to get things done.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 12:51:49 PM

Not sure if they'll get to any questions before it is over . . .

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 12:52:58 PM

Questions . . .

some answers . . .

not full of a lot of meat.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 01:05:18 PM

There was a question re: peanut bans,

but they'll add the Q&A for that onto the published webinar and/or blog later.

There was a question re:  school bus drivers and epi-admininstering, but they were not all that helpful as to answer / advice.  I did not feel that they truly understood some of the issues many in this nation are facing with school bus and epi.  JMHO.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 21, 2014, 01:14:14 PM

Overall impression:

Not very dynamic.

Not a lot of new information.

Lost opportunity.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: guess on October 21, 2014, 11:52:15 PM

Now connect the dots with you--and your organization--in the broader picture.

This webinar brought you in contact with a framework of people, organizations and parallel work in progress. You're one of the head administrators of a non-profit with thousands of members, one that has been recognized as a resource by a very well-respected legal advocacy establishment.

Pump the brakes a bit before chalking it up as a lost opportunity.

You're the head of an advocacy based organization that is weighted heavily towards disability civil rights ADA primarily in education. What's missing can be brought to the table if it's not there already, and it can be done by identifying partners for collaboration. There are likely quite a few potential allies and colleagues heading kindred organizations that would love to partner with another specializing in an area they have not yet developed, or are weak in.

In all fairness the bus issue is a tough one to crack I would not hold it against them to not have much of a response mounted. I do think it's a positive sign that it was brought up.

As much as I do offline, online there's a lot more that can be done if I may say suggest. There's a few here I would identify as persons likely to suit up for ADA roller derby style, yourself included. To that end there's a few resources to mine before going to special education based training that is going to be geared to address the IDEA Part B about 80% by volume, maybe 20% 504 and ADA.

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ADA National Network Overview of Disability Rights Laws

Welcome to a free, self-paced course on federal disability rights laws.

The course will take approximately 90-120 minutes to complete. All you need is a computer and an internet connection.

The information below provides details about the course and will help you determine if this program is right for you.

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ADA Training

Bookmark and reference these comprehensive training resources on the Americans with Disabilities Act (ADA) and disability-related topics from the ADA National Network and collaborative efforts by national, regional, and local Networks and Partners. For questions and customized training, contact your ADA Center: 1-800-949-4232

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Northeast ADA Center Online Learning

The ADA and accessible transportation (Title II and Title III)

Wednesday, February 11, 2015
01:00 PM - 02:00 PM EST

Presented By:

    Employment and Disability Institute

amongst others

Imagine if a team of individuals here take every opportunity free and available at a self-directed pace for a considerable amount of time. That's the honed specialty you inject into the system, making sure not to overlook the single most powerful leverage for opportunity that's here: a registered non-profit that can sponsor individuals (or send key administrators/staff) for advanced training not available to stand alone individuals without organization sponsorship, and group training offered to established organizations.

Do that and you start networking with key ADA people.

Title: Re: KFA/AAFA - Parent advocacy / schools / changing laws
Post by: ajasfolks2 on October 27, 2014, 02:51:34 PM

This is supposedly the link.

have not watched yet (but I did participate)

How Parents Can Change Laws to Protect Students with Food Allergies