AAAAI 17 #AAAAI17

[ajasfolks2]

Doh!  Took me a minute to get you gvmom -- yes I see his name pg 6 now.

Hmmmmm . . . . . that makes what he may have said (if he said it the way portrayed on Twitter) even more aggravating.

Maybe I need to send him a copy -- highlighted - of that .pdf!

How many times does 504 appear in it?  Need to go count.


55 times in 108 pages!!!


Seriously considering sending with a note.

[gvmom]

Doh!  Took me a minute to get you gvmom

[lakeswimr]

I also think that I would wait to hear the full conversation to judge that.  It is unfortunate that this out of context sentence was released onto twitter.  I agree with Mr. Barlow about this.  Things that could sound very bad out of context often have quite a different meaning that is obvious to those present.

People get misquoted all the time.

If he did say and mean what the twitter post implies, that's really surprising.  He seems to be the type of person who if emailed politely, would be open to learning.  He seems like a nice, caring doctor.

[gvmom]

From what I could figure out .... or it appears to be..... is that the tweeting guy/doctor/allergist is just tweeting along during a sort of meeting where topics are discussed.  Like a monthly meeting of allergists that belong to some medical group and they get various people, including allergists, to talk about different topics.

These days, anything can be lifted from anywhere to sound like anything.  Even something that is actually factual, but without context, can be used or twisted, including in ways against parents working to get 504's. 

The argument about whether or not an expert is aware of the issues can be possibly be understood if you find things that they've been involved in, cited in, or acknowledged in as a large contributor.

I don't doubt someone being an expert and being a great doctor based on one lifted tweet.  It is concerning that when you have people who seem to be very much aware of the 504 process, and very likely why parents go that route, and likely understands their role as expert, they aren't parsing their words closer.

And, it is likely that things have changed since we were in the 504 world ..... but ..... there were at that time, doctors that you did use specifically as expert sources for documentation to prove you weren't some lunatic that made up food allergies.  If any of those experts you are using then have statements that could be used to refute the need for a 504, you are SOL, because then you are put in the position of having to undermine your own cited expert source. 

I mean, these days, is the 504 process any less antagonistic? 

[Mr. Barlow]

Section 504 and IDEA are the proper statutory mechanisms.  Not screaming, crying, cutting deals, or any other arbitrary derailment from the rules.  You all know this, and I know you know this. 

This is all they are.  The antagonism comes from administration ignoring compliance, capacity building, and performance.  You have to look at motivation from white collar professionals to enable "traditions" that are for all intents and purposes come from individual emotions like nostalgia, wanting to be liked or popular, or unsure how to effectively lead through social discomfort.  Rationalization is a powerful psychological driver of bad behavior from good people. 

Christiakis's Op Ed was damaging, as was Stein's use of Christiakis' journal op ed.  Up until now there has been little accountability for such reckless and harmful statements that only have THAT level of punch because it is said by individuals banking on not only their personal credentials, but as spokespersons of large, well-funded institutions with good reputation.  That's an immense amount of social capital that when used thoughtlessly out of emotion rather than competence, is at the least unethical.

My question is to you all: Are you ready to do what is necessary to hold such persons accountable?  It would not be for the meek.  It can, and arguably should, be done.  Is that what you want to do? 

[ajasfolks2]

In terms of the 504 comment attributed to Sicherer, I'd sure like some video of audio of the conference presentation to verify . . . . or perhaps first step is to try to reach out to Sicherer on this and ask him directly if that IS what he said ad what he MEANT.

As to the put peanut into had comment, I'll let that be somebody else's battle.

[Mr. Barlow]

I also think that I would wait to hear the full conversation to judge that.  It is unfortunate that this out of context sentence was released onto twitter.  I agree with Mr. Barlow about this.  Things that could sound very bad out of context often have quite a different meaning that is obvious to those present.

People get misquoted all the time.

If he did say and mean what the twitter post implies, that's really surprising.  He seems to be the type of person who if emailed politely, would be open to learning.  He seems like a nice, caring doctor.

I agree broadly, but would like to point out the nuance in which I have answered thus far.  I do not disagree with the crux of gvmom's argument.  I do not misunderstand her point(s).  What I (and we) must do is follow process, and these are governed by rules with agreed upon thresholds for resolution--or punishment.

Personality is not at issue, nor are the roots of ignorance or justifications to continue in ignorance.  It is action(s) taken and the results of such action(s) if they cause harm to others by subverting the intent of legal protections by clearly operating outside of professional scope in a multitude of what are now very indelible ways.

[Mr. Barlow]

Seriously considering sending with a note.

May I please request don't?  At least not to him in your singular name.  Gather enough to demonstrate a clear, factual pattern that accurately narrates the impact of statements on an entire class of protected persons within the context of federal, NYS disability law, and NYC nondiscrimination ordinances.  The city and state government of NY are robust compared to other states with enforcement equally robust if a report is written in a professional manner.

Ideally this has multiple signatories sent in to the institution's ADA coordinator with the risk department, ethics committee, NYSBA, NY SEA, education chancellor, and Disability Rights NY office copied. 

[Mr. Barlow]

As an academic exercise in the theory of accountability...

Here is the Sinai nondiscrimination statement.  To my knowledge it is compliant, which is good.  A compliant nondiscrimination statement is prominently placed, widely published, and has verbiage "we do not discriminate..."  Nondiscrimination absolutely intends to not treat differently on the basis of disability.  It is not limited to openly hostile statements.

By the way, this is only a template using Sinai as an example.  The same goes for institutions within scope.

The Mount Sinai Health System complies with applicable Federal civil rights laws and does not discriminate, exclude, or treat people differently on the basis of race, color, national origin, age, religion, disability, sex, sexual orientation, gender identity, or gender expression.

We can always hope someone stealth emails or tweets this thread until it makes rounds.  There is a distinct reason I'm keeping my language fit for institutional reception.  By all means any allergists, nurses, or public administrators reading this, do check with your agency's attorneys, Title II directors, or risk departments.  I encourage it.

P.S. Read, then reread, your organization's policies on social media use and ethics.  I know a few of you out there have strayed, to put it euphemistically.  Your institutions have terrific compliant ethics reporting inputs.  Oh, and the terms of malpractice insurance policies.  Don't want to forget those!

[gvmom]

My question is to you all: Are you ready to do what is necessary to hold such persons accountable?  It would not be for the meek.  It can, and arguably should, be done.  Is that what you want to do?

I'm not sure how to word what I'm thinking, but I'll give it a go. 

Do you think that there are those of us who haven't tried to hold people accountable?

Section 504 and IDEA are the proper statutory mechanisms.  Not screaming, crying, cutting deals, or any other arbitrary derailment from the rules.  You all know this, and I know you know this.

If you know that we all know the above,  and you add this:

This is all they are.  The antagonism comes from administration ignoring compliance, capacity building, and performance.  You have to look at motivation from white collar professionals to enable "traditions" that are for all intents and purposes come from individual emotions like nostalgia, wanting to be liked or popular, or unsure how to effectively lead through social discomfort.  Rationalization is a powerful psychological driver of bad behavior from good people.

.... then add in, the years, as parents we that go through meetings, gather documentation, and build a case like you are headed to the supreme court.... go up food chains in school districts, consult with disability attorneys, and file OCR complaints.....

I'm not sure what all else you are thinking of.

Frankly, I just wish we pulled our kids from public school sooner.  Plain and simple.  I think, that when you go into a 504 meeting it should be like when you call the OCR .... which for me, the first time, I nearly started crying, but really just had my breath taken away and sat in disbelief for a few moments because I actually didn't have to sit and go through everything I prepared to first of all prove to the woman I was speaking to that LTFA's was a hidden disability and qualified my son for a 504.  I sat there listening to her tell me that before I even could gather myself back together.

Until schools really are about children, completely, then you aren't going to be able to escape the politics, money, posturing, social dynamics, etc., that infiltrate and corrupt things meant to help every child truly have a free and appropriate public education. 

[Mr. Barlow]

Isolated to previously defined scope: allergists issuing blanket statements that may be discriminatory and/or attempt to give legal advice and/or medical advice about individuals who are not their patients resulting in harms to those individuals or as a class.

Not beyond that.

Edited to add different agency jurisdiction.  HHS OCR, not DOE if the federal funds flow through HHS and it probably does.  Nothing that can't be cleared up with a FOIA request.

Filing a Civil Rights Complaint

If you believe that you have been discriminated against because of your race, color, national origin, disability, age, sex (including sex stereotyping and gender identity), or religion in programs or activities that HHS directly operates or to which HHS provides federal financial assistance, you may file a complaint with OCR. You may file a complaint for yourself or for someone else.
If you believe that you have been discriminated against because of your disability by a State or local government health care or social services agency, you may file a complaint with the OCR. You may file a complaint for yourself or for someone else.

[Mr. Barlow]

Sorry for the multiple posts.  I was mobile.

There shouldn't be any "we" in your 504/IEP or mine.  That relationship should be limited to persons knowledgeable about the student with disability.  To ensure that process is safeguarded there may be need to coordinate against events or instances that violate policies, regulations, or ethics in a manner that broadly affects us as a group or class. 

This, however, isn't about the 504 process itself.  It's about actions, poor decisions, and behavior by professionals contrary to their own institution policy, professional organizations, ethics, law or regulations that intend to negatively* affect parent advocacy for 504 due to reasons outside the scope of their licensure.

For example: I'm not asking Sicherer's legal opinion on 504.  I'm not even asking my allergist's legal opinion on 504.  The only question for our allergist is does this condition substantially limit a major life activity when acute?  The rest is governed by rules that don't involve him.

I also wouldn't be asking any physician to opine if he or she personally or professionally believes adult employees with a specific qualifying condition should or should not be able to seek disability protections in their place of work.

The question about physician accountability in media remains.  You will be highly criticized for doing so, possibly socially ostracized.  This isn't meant as discouragement but more to encourage a thoughtful process.

*intend to negatively affect in my lay expression here refers to assume he or she knows more than you as the parent and your child based on the absence of relative facts

[gvmom]

Okay, well I'm still confused.

You put:

My question is to you all: Are you ready to do what is necessary to hold such persons accountable?  It would not be for the meek.  It can, and arguably should, be done.  Is that what you want to do?

I ask:

I'm not sure what all else you are thinking of.

Then you clarify:

Isolated to previously defined scope: allergists issuing blanket statements that may be discriminatory and/or attempt to give legal advice and/or medical advice about individuals who are not their patients resulting in harms to those individuals or as a class.

Not beyond that.

I must be missing something.  I have a whole lot of other stuff swirling in my head about everything else you put, but, getting down to just the essentials, without being mired in all of the extraneous stuff you've got there, I am still wondering where you are headed?

You ask a question that seems to suggest that you are asking a group, or, maybe a collective that might be able to do something, or do you think an individual is going to tackle something to somehow do something, which I have no idea what that would be, though you suggest that whatever it is "would not be for the meek", which suggests you have an idea about what to do, about the scope you state.

Or are you just asking a question to ask it?  It would be helpful to know.

[gvmom]

For some reason, I've been thinking about this thread.  I got a funny thing (to me) that ran through my head.

Picture doctor guy in white lab coat walking down the hall in medical building.  Sort of the character of Scott Lang.  Jogging up beside him, another doctor guy, white lab coat, Tony Stark-ish.  He comes up saying to first doc, "Hey Scott-y..... " with a slap on the back.... continues ... "Matt-y's been tweeting you out of context again..... "

1st guy... stops and sighs... says "I've talked to him about this......."

3rd guy comes walking up .... sort of Luis character .... from right side, up from another hall, intercepts others....

Scott looks at 3rd guy and says, "Have you been tweeting me out of context again?  You know how much trouble that gets me in from those moms on the internet!"

3rd guy looks right into the camera and says, "I say..... yes...." with big smile....

Okay..... anyway..... that sort of really has no point, except maybe I was sort of imagining maybe an exchange by doctors in a hallway somehow .... given the world of tweeting, etc.