Seeking official accommodations via the College Board (SAT/PSAT/AP)

[CMdeux]

Absolutely-- but-- the need itself is absolute, if you KWIM. 

Several diabetic families I know have handled it off the record, as well-- knowing that their kid was probably going to run high, and just figuring, well, better that than LOW... it's just one day...

but then I reconsidered when someone pointed out that they had initially done that, but needed to get accommodations for AP exams later, and then when the student retook the SAT with breaks as-needed (ie-- under better control) the scores told the story.  They were (seriously) about 20 points higher.

Given that this is going to be at a location that is unfamiliar, and a stressful situation to begin with (it is for everyone), I think it's only fair to DD for her to be able to step back and evaluate "is this just anxiety, or is my chest getting tight??" rather than trying to ignore a possible problem.  I realize that might not be such a big deal for many kids, and if I didn't think that anaphylaxis was a seriouos possibility, I wouldn't either.

DD really does have a lot of trouble in environments where people have been allowed to eat food over a long period of time, and she really does not always present with symptoms that (even to her) necessarily seem really obviously "allergic" in nature until she's more or less incapacitated.

  Sometimes that low level exposure just stays "annoying" and sometimes it doesn't.  I probably would just go with the flow and hope for the best (like my friends with diabetic kiddos) if we didn't have indicators that she might be in NMS range after the PSAT.  In her case, for that reason and that reason only, we do think that it is probably important for her to have as few impediments to success as possible. 

I'm sharing only because there really isn't ANYTHING on how to officially get accommodations from College Board for specific medical conditions other than diabetes, at least not that I found.  DD's 504 plan also doesn't really address any of this because when her school does state testing-- they come to our house to proctor, and they follow rules even when doing that (no eating allergens that morning, washing hands, etc.).  So they don't really assume duty of care for her, and therefore there isn't any need for most of those provisions (which would ordinarily be IN A 504 PLAN.)  Just wanted to clarify that.  With a comprehensive 504 plan and a simple physician's letter, it is quite straightforward, apparently.

 When the school counselor spoke with them and went over the above points, incidentally, the response was quite favorable in terms of this all being quite straightforward and reasonable in terms of what is being asked.   

[CMdeux]

Here, the standard is that NOTHING is allowed in the room but the students, the proctor, and the calculators and pencils basically-- at leat not without specific accommodations in place.  One friend's DD was hassled pretty hard about an insulin pump, for heaven's sakes.  I have also heard of proctors that bring in a 'snack' for themselves on the sly.    

So yeah- mostly, it should be fine, as long as you have someone running things using common sense.  In reality, though, it's like hoping for rational thought from the TSA.  "Should" doesn't necessarily mean "will" without compulsion.  LOL.

[maeve]

DD really does have a lot of trouble in environments where people have been allowed to eat food over a long period of time, and she really does not always present with symptoms that (even to her) necessarily seem really obviously "allergic" in nature until she's more or less incapacitated.

The room I was assigned to the first time I took the SAT was in the cafeteria.  That is always a possible location.  BTW, it was awful because the room was so wide open and then the proctor let someone in to use the soda machine so in the middle of the exam we had the noise of money going in the machine and the soda being dispensed.  The second time I took the SATs at a local prep school and we were in a classroom, but the proctor let the prep school kids return from breaks late even though the test had started again.

[CMdeux]

Okay, this is really just sort of ancillary-- we have a 504 review planned and the counselor (who is brand new on the job, and I don't think has much experience with FA or other chronic medical conditions as a basis for being a QID) decided that the allergist's letter was "dated."

Well, fine.  We needed to get something current for the College Board anyway. (They prefer documentation which is within the same year as the first planned exam).

So we are getting an updated magic letter from Dr. Awesome for our 504 team and the school, too--  (Please note that this is the ADOLESCENT version of this document, which is admittedly a complete and total, no-wiggle-room-allowed, no-holds-barred, SLEDGEHAMMER of a document in support of 504 eligibility.)  My profound and eternal thanks to GailW and her DD for letting me see and tweak their original into this eventual form.     I'll forever be paying that debt forward.  Truly.    

(DATE)

To Whom It May Concern:

  I have been asked by {CM DD}'s parents to provide medical information regarding {DD}’s allergies.  I understand that you need specific and current information that will be used to determine whether or not {DD} meets the criteria for disability under Section 504 of the Rehabilitation Act of 1973 (ADA and ADAA of 2008).  I believe that {DD} qualifies for this designation based upon her diagnosis and clinical history of life-threatening (anaphylactic) food allergy.

Anaphylaxis is defined as a systemic allergic reaction which may cause death or permanent disability.  At least 150 people die each year in the United States due to anaphylactic reactions to foods, most commonly to peanuts.  Below, I briefly describe the body systems affected during anaphylaxis:

Systems and Symptoms:

Skin and subcutaneous tissues: flushing, mouth itching and swelling of the lips, tongue, or mouth, and/or hives.

Gastrointestinal system: nausea, abdominal cramps, vomiting and diarrhea (if severe, can cause intravascular volume depletion and shock).

Respiratory system: sense of tightness/itching in the throat, hoarseness due to edema of the larynx (may close the airway), hacking cough, shortness of breath, and/or wheezing.

Cardiovascular system: “thready” pulse, decreased cardiac function, decrease in blood pressure which may lead to dizziness, loss of consciousness, shock, and possible cardiac arrest.

  {DD} has required emergent medical care for anaphylaxis on more than one occasion.  She has a history of rapidly progressing anaphylaxis involving the skin, gastrointestinal, respiratory, and cardiovascular systems.  Due to this reaction history {DD} is at elevated risk for fatal anaphylaxis.

{DD} was diagnosed with life-threatening food allergies at 11 months, following emergency medical care for peanut-induced anaphylaxis.  Since that time, she has also been diagnosed with life-threatening allergies to eggs and several tree nuts (almond, pistachio, cashew, etc.).  She has a clinical history of reactivity to ingestion of microscopic quantities of allergens, contact with allergens, and inhalation of allergens.  Some reactions have been atypically-presenting (without airway or skin features) and therefore very challenging to correctly identify in a timely fashion.  Possible anaphylaxis symptoms must be treated as a medical emergency.

For the purposes of a Section 504 designation, I attest that {DD}’s medical condition substantially and significantly affects the life functions of caring for herself, normal immune function, and eating.  Anaphylaxis can, when active, also substantially and significantly limit the life functions of breathing, talking, walking, normal cardiovascular function, thinking and performing manual tasks, among others.

There is no cure for food anaphylaxis.  Unlike other allergies for which treatment options include medications or immunotherapy (allergy shots), presently all such treatments for food allergy are considered investigational and high-risk.  There is no such approved treatment or device that can act as a mitigating measure for those who are anaphylactic to foods.  Regular maintenance medications do not eliminate the need to practice avoidance, nor does epinephrine or any other rescue medication or device necessarily resolve anaphylaxis or eliminate the need to seek additional emergent care.  Death or permanent disability is a possible outcome any time anaphylaxis is triggered.  Peanut is of particular concern since triggering doses may be very small and too variable to be reliably determined for an individual.  Therefore, total avoidance of allergenic foods is imperative.

Avoidance of all contact with food allergens (peanut, egg, and tree nuts) is the only way to avoid a potentially life-threatening allergic reaction.  Such avoidance is a highly complex task requiring excellent judgment and social skills, particularly when needs place a person in conflict with a peer group.  This is difficult for adolescents, whose executive skills are not yet mature and who may take unacceptably large risks or even hide/dismiss emergent symptoms in order to gain social acceptance with peers.   Adolescents must be strongly encouraged to advocate assertively for their needs as appropriate and guided toward good management decisions as they assume the responsibility for their food allergies.

Successful avoidance requires a comprehensive written accommodation plan in consultation with the patient, parents, and physician.    I consider {DD}’s parents; CM DH, Ph.D., and CM Ph.D., to be knowledgeable about the successful management of their daughter’s medical condition.

Sincerely,

 Awesome Person, M.D.
{additional fancy qualifications as he sees fit}


Obviously, there are significant elements there which include my daughter's specific allergens and her specific history.  It's probably also true that mentioning one's own qualifications is probably not necessary, but if you have a terminal degree, (particularly an MD or PhD) it probably doesn't hurt to put it out there since you're basically having the physician say that you are "EXPERTS" yourselves.     I've found that it can garner some street cred when it's sorely needed (as in negotiations with school staff over something that they don't feel like doing).

I'll post the original elementary aged one up in resources tomorrow. 

[twinturbo]

Thanks x 3 for posting all the letters. We'll be needing it.

[CMdeux]

Off to the allergist via e-mail!   

One word of warning before anyone lifts the entire document and plops it in front of an allergist to sign--
unless you have a relationship with that allergist which is: a) positive, b) constructive, c) collaborative, and d) VERY long-standing; such a document (complete with references) is likely to raise a LOT of questions with that allergist.  Questions about MSBP, to be blunt.    That document is something that I wouldn't have presented to this allergist six years ago, even though I probably could have written it then, and even though I have a PhD in a relevant discipline which explains how I know some of that stuff, and why I'd be interested in particular quirks of pharmacology/cognitive research.


One final thing to note, also-- the neuroscience references that are included in that document (the large one with citations) are probably outside the scope of expertise for most allergists.  This may well include ours.  He and I have had a discussion about that, but the bottom line is that my expertise is official in that area.  What this means is that some allergists might not be comfortable with that portion of things, and ours might not either... but for effective consultation with someone who has a PhD in the relevant discipline (neuroscience) and therefore has the ability to examine the literature as an expert.

I wanted to mention that specifically, as the references used to support those points are-- um-- 'extrapolations' of more general research.  Not grossly so, no. I truly believe that any neuroscientist or cognitive-behavioral specialist would make the same conclusions without batting an eyelash.  Notice that I did not include a lot of predator-scent research there.  It's too big a leap, basically.  Foot-shock relates directly to learning/performance and it's a technique that has been used in the field for decades, so it is rock-solid in terms of being an accepted means of studying stress and fear and conditioned responses.

It's pretty obvious physiologically why anaphylaxis would induce cognitive impairment.  Too bad there isn't any literature to support that from an empirical side, but it's also obvious why not.     Here, we're going to induce anaphylaxis, measure blood flow with a fMRI while we ask you math SAT questions, okay?  Here's a five dollar gift card for your trouble.  LOL.  Yeah, NO.   (Can I be in the sham treatment group, please??)

[Carefulmom]

CM Deux, I wasn`t suggesting that you blow off accomodations, just saying that a lot of it probably won`t be an issue.  But I agree, one never knows.  What if the proctor is eating?  I have not seen them have any issue at all with purses and tote bags.  They just have to stay under the desk.  Worse case scenario, the kids are required to put their purses and tote bags in the front of the room.  But they definitely need to know about your dd anyhow, because if she is having sypmtoms or maybe having symptoms, she won`t be able to talk to tell them if they don`t know about her allergies.  About the person whose scores went up with accomodations, SAT scores tend to go up anyhow with practice, so it is hard to know if the accomodations caused higher scores, or if the scores would have gone up without accomodations.  The average increase over time with multiple tests is over 200 points.  I think you probably don`t need an epi trained person IF you plan to sit outside the room.  And I forgot, we are not even talking SAT.  It`s PSAT, so less than 4 hours---I think more like 2 hours?  I actually don`t recall.  Dd has taken so many tests, they all start to run together, lol.

[CMdeux]

Oh, yes, I know that you weren't.
Yeah, not sure if the point difference in that anecdote was about blood glucose or repetition.  No way to know, but the young man's perception was that it was blood sugar related. 

The PSAT is about 3 h including breaks.  You'd better believe that I'm right outside... and I'll make that clear when we arrange a testing site and when we speak to the proctor the morning of.

The nice thing about doing this through the College Board (as opposed to ACT) is that you really only have to go through the application process ONCE.

Just once, and with approval, the student has it already in-hand for AP exams, PSAT, SAT, etc.  I'm not sure if it carries over to ETS exams or not, but clearly for college-bound kids, it really makes sense to go to the trouble. 

[Carefulmom]

Oh, yes, I know that you weren't.
Yeah, not sure if the point difference in that anecdote was about blood glucose or repetition.  No way to know, but the young man's perception was that it was blood sugar related. 

The PSAT is about 3 h including breaks.  You'd better believe that I'm right outside... and I'll make that clear when we arrange a testing site and when we speak to the proctor the morning of.

The nice thing about doing this through the College Board (as opposed to ACT) is that you really only have to go through the application process ONCE.

Just once, and with approval, the student has it already in-hand for AP exams, PSAT, SAT, etc.  I'm not sure if it carries over to ETS exams or not, but clearly for college-bound kids, it really makes sense to go to the trouble.

Right, and given that there is no local school that she belongs to, they really don`t know about her.  When dd takes AP tests at her school, her friends are there (epi trained), school nurse is there who knows all about her, her epi trained teacher is there, it makes it so much easier.  For PSAT it was at her school also.  SAT was not at her school and she did not know anyone.  But she is not as contact sensitive as your dd.

[CMdeux]

Ack.... the fun just never ends.

School counselor (the one who is new on the job?) has apparently decided (??) that this meeting calls for a complete REVIEW OF ELIGIBILITY.


Excuse me??!!!       No.  It does NOT.

Hopefully doctor's note will disabuse them of that particular notion in a hurry, but I'm kind of disturbed that they decided that ELIGIBILITY needs to be determined again. 

I've asked for clarification on this particular point, in fact. 


Getting the sense that I'm not really dealing with the "A" team, here-- I've now had two different times given to us for the meeting... (by the same person, no less, and the person who is SUPPOSEDLY spearheading the meeting, our 504 Coord, who is also new to the job this year...  )

Call me cynical, but I'm a bit suspicious about this.  It seems to me that "504-C" and "us" isn't exactly a valid "504-TEAM" in the first place, and that could well be the default if there is 'confusion' about the meeting time.  Admittedly, the NEW time is better than the original for DD... and the most likely explanation is, er-- less-than-stellar organizational capability on the part of the 504-C. 

And the bonus here is that the 504 C e-mailed me twice this morning;  a) once to let me know that she will be "out of the office" for the remainder of the day, and b) the second time to give me the meeting time (in conflict with the e-mail re: the meeting time from a week ago, recall).

Gaaaaaaa.  I caught the e-mails almost immediately (within ten minutes) and responded seeking clarification about meeting PURPOSE and also TIME.  No answer.  New meeting time is first thing tomorrow morning.  So no way to clarify it at this point, and nobody to ask.   



So I'm e-mailing the school COUNSELOR (different person than 504C) by forwarding the 504C's second e-mail to me along with the following note:

{Counselor firstname},

I'm sending this to you since {504C firstname} is apparently out for the rest of the day and didn't respond to my inquiry before she left.

  Do you have any idea why this has become an eligibility (as opposed to "review") meeting?  Eligibility should not be in question given the nature of {DD}'s disability.  What have I missed here?

Do you know which time is correct?  {504C firstname}'s earlier webmail had us meeting at {time}, and this one indicates {earlier time}.

Thanks,

{My firstname}

[CMdeux]

OH, great.

Autoreply indicates that Counselor isn't necessarily available today, either.  <teeth gnashing>

[ajasfolks2]

There is some good news, at least unofficially!

When the school counselor spoke with someone at the College Board, they agreed that (based on our no-holds-barred outlay of daily impact and justifications for accommodation) that this all seemed quite straightforward and reasonable.

Keeping my fingers crossed that it still seems that way after next week, but that is at least some good news.

I just wanted to point out (knowing that CM knows this, but just in case others don't, or get trapped by verbiage) -- the counselor and the "someone" at the College Board may have used the word "reasonable" in their initial assessment and response, but it is CRUCIAL that always the letters from parents/student and physicians stress the exact language of Section 504 which is that the accommodations be "NECESSARY AND APPROPRIATE" for the student.  I would always make that distinction and not let the other try to push back against something as being not "reasonable" . . .

"Reasonable" applies in ADA language for a workplace . . . remember that these accommodations in this thread are for education/school related so NOT bound by subjective test of "reasonable" (or refusal as "unreasonable") so far as the letter of the law. 

[ajasfolks2]

Spelling out (in writing, bullet-by-bullet, with physician sign off) the "whys" for "Necessary" and "Appropriate" for each and every accommodation may be necessary in some instances.

[ajasfolks2]

. . . and CM, as to the most recent developments, GGA!!!! 

"Not 'A' Team" is nicely put . . . you're clearly going to need some extra patience for meeting.

[CMdeux]

Ask how freaked I was when the receptionist initially couldn't locate Dr. Awesome's packet of letters on letterhead.  <hair on fire>  Tense twenty minutes, that was.  LOL.

RE: "reasonable" accommodations.  I'm pretty sure that College Board is not bound by Section 504, but by Title I(?) or is it III (?) I always get those confused. 

ANYway.  I'm pretty sure that because this is technically extracurricular and not "sponsored" by the school itself... and not "required" by any high school, for that matter, that this comes under place of public accommodation.

Therefore, DOE-OCR isn't overseeing such things, and Letter to Zirkel doesn't apply.  "Fundamental nature of the activity" and "reasonable alterations to practices, policies, and procedures" is the standard.  This is sort of a no-brainer to me... that PHYSICAL accommodations ought really to be easy to both understand and to implement, since they clearly do not confer anything in the way of unfair advantage (unlike, say +100% time which most certainly can).  The reality is that there are a lot of families willing to be unscrupulous about securing unfair advantage on this kind of high-stakes test, though, and anything that looks "odd" is going to get additional scrutiny, and the reflexive response from College Board is "no, you didn't demonstrate need" when they are confused about anything.

It's educational, of course, and the reality is that it IS a de facto requirement at this point in time for any child not destined for the military or unskilled labor post-secondary... and obviously anyone with a medical disability isn't eligible for the former in the first place.  ANYWAY.

  But I saw definite language from both College Board and ACT that indicate that they are under no particular obligation under ADA section 504 or under IDEA.  They are NOT obligated for LRE or FAPE, and they are not obligated to anything more than, say, an employer or business owner is in making accommodation for the disabled.  The standard of what they must provide and why is different from the underlying spirit of Section 504.


I'm still more than a bit miffed over the "eligibility" meeting tomorrow.  Believe me, I do intend to address that fairly directly.  That is INAPPROPRIATE.  Period.  A "review" of data supporting eligibility as part of a regular 504 review?  Fine-- probably a good idea in light of the information that the College Board is seeking/apparently wanting.  I don't like the whiff of "we can hold another eligibility meeting any time we feel it's warranted" though.  The school isn't qualified to offer opinion on change in eligibility, frankly.  If we-- or her physician-- feel that the qualifying condition has changed, it is for US to let THEM know-- that is in part what periodic review is about, n'est pas? 

Grrr.  Clearly momma needs one of these today and tomorrow: