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Discussion Boards => Schools and Food Allergies => Topic started by: wackattack69 on August 14, 2017, 08:48:32 PM

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Title: New College has no clue about PA
Post by: wackattack69 on August 14, 2017, 08:48:32 PM
I have not been on here for a while (and that's good news) but DD is starting her 4 year college on Monday. She finished her first two years at two different community colleges-and her accommodations were exceptional!!
 One month ago, she went and met with the head of the Disability Services Dept. She brought in her Food Allergy Action Plan from last year, as well as the disability form from her previous college. The man stated he had never heard of a peanut allergy and wasn't quite sure what to do about hers???? She pointed out the paperwork that she was leaving with him and asked if she would need to sign a "plan" of some kind.He said "nope" there was nothing to sign. We thought this was odd. She told him if he had any questions to please call her. He had her email and phone number.
 So, today she stops in and he has done NOTHING with her stuff...NADA. He was going to ask about "peanut free" classroom signs, but was afraid that the maintenance department would get mad. He was also sick for a few days (he's had this stuff for a month). He gave her, nor showed her any written plan of any sort. He told her that he made a note in the computer that she could make up any tests she missed due to being in the hospital from an allergic reaction???? :rant:
 DD asked him to please call her Disability contact person, from her previous college and perhaps they could help.
 She came home devastated. This man has NO CLUE. We both want something in writing that her teachers are aware of her PA and asthma and know to call the EMS, etc. should she need the Epi Pen.
 The school website states that "each student will develop an individualized plan for services with ODS"-Office of Disability Services. He has no plan just a "note in the computer". Can someone please, please tell me what to do, (have DD do). I cannot believe this man's ignorance and DD is so excited to start this school. It starts on Monday.
 We need help....please.
Title: Re: New College has no clue about PA
Post by: PurpleCat on August 15, 2017, 05:32:28 PM
 :grouphug:  I honestly do not know!  We did not go through that department for college.  I hope you get some answers and seriously, dude!  Do your job!
Title: Re: New College has no clue about PA
Post by: becca on August 15, 2017, 05:55:20 PM
That's crazy!  I don't have answers for you.  I hope someone does! 

Will she live on Campus and have a meal plan?
Title: Re: New College has no clue about PA
Post by: gvmom on August 15, 2017, 06:13:32 PM
Just trying to sort of figure things out from your post.  Forgive my questions.  I frequently think in terms of how to do things "in the meantime" while you wait for more formal stuff. 

Trying to do the math..... your DD is around 19/20?

Is she going to live on campus? 

Does your DD go and do stuff on her own? 

I'm sort of distracted at the moment with kids in the background.... but.... it may take awhile to get this guy up to speed.  He may never get there too.  The requirements for secondary education are different than k-12.  Some accommodations that you may feel are necessary in an action plan, they may see as something that your DD can just go up to her teachers and tell them. 

Also, the school might not have ever gotten requests for stuff before because many things a college student has more ability to just advocate for themselves in the moment about.... which is different than k-12.  Prevalence of birthday parties or seating charts.... lots of times those don't exist ..... and if they do, again, it is hard to imagine your DD getting a teacher telling her she can't move away from someone eating in class.  Frankly, I would bet that other college students would be way nicer these days about FA's.  Plus, your DD can take wipes with her to wipe a desk down .... my DS1 has individually wrapped wet ones coming out his ears. 

It also might be helpful though to get an idea of her reaction history.  If she's had a history where she doesn't go do stuff on her own, or ends up needing hospital trips, then that seems sort of different than a "just in case" for something that doesn't happen regularly, and one day she might be out doing something on her own, and she'd have to turn to a stranger and ask them to call an ambulance.  You'd hope that college wouldn't quite be like that... but if she is randomly walking around campus and on her own, and something happens, it will be up to her to try and do something and get help from people that don't have any idea about her action plan.

I'll try and think more.... but.... besides the ambulance what other things is she asking for?
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 15, 2017, 06:45:32 PM
Thanks everyone, even if you can't help.
Today, DD contacted the school nurse (her own idea), who is a nurse practitioner. She is going to try and get her help in educating the head of Disability Services.
As far as what DD is asking for--something on paper a "plan" that states that her teachers have been informed of her allergy, it's severity and the fact that 911 would need to be called, if DD needs to Epi herself. The other colleges have always done that,without a problem. I guess we want to have things on paper in case she ever needs 911 called or needs to leave the classroom if someone next to her opens a Kit Kat-KWIM?? At this point, she has nothing in hand to state that her teachers are even aware of allergy, not to mention her severe asthma.
She is not living on campus, as we only live 25 minutes from school.
Am I wrong to feel so shocked over this? This isn't all new to us, she went into shock at 18 months, we had to file a complaint with the OCR when she was 12. I feel like we are starting from square 1 with this college.
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 15, 2017, 06:49:56 PM
:grouphug:  I honestly do not know!  We did not go through that department for college.  I hope you get some answers and seriously, dude!  Do your job!
What department did you go through?
Title: Re: New College has no clue about PA
Post by: BensMom on August 15, 2017, 07:01:01 PM
I don't really know what to tell you, but I'd try a little research. Google food allergies and the name of the school. See if there's anything on college confidential. There has to be someone who's PA there, even if they haven't asked for accommodations. This guy is head of disability services, but he still has a boss--maybe go talk to the boss. Or tell this guy--if you can't help me, can I please speak to your boss? But I'd also like to think that any teacher who sees a kid giving herself epi and yelling "call 911, I'm having an allergic reaction" will, you know, call 911.
Title: Re: New College has no clue about PA
Post by: gvmom on August 15, 2017, 08:54:59 PM
Thanks everyone, even if you can't help.
Today, DD contacted the school nurse (her own idea), who is a nurse practitioner. She is going to try and get her help in educating the head of Disability Services.


I think that is great!  She is being pro-active and self advocating.  Which, from what I can tell, is what colleges expect.  Theoretically, while they still may be our kids, unless it is billing/payment, colleges think the students should be the ones doing everything. 

As far as what DD is asking for--something on paper a "plan" that states that her teachers have been informed of her allergy, it's severity and the fact that 911 would need to be called, if DD needs to Epi herself. The other colleges have always done that,without a problem. I guess we want to have things on paper in case she ever needs 911 called or needs to leave the classroom if someone next to her opens a Kit Kat-KWIM??

Even if she has a paper plan, if she is sitting in a classroom and has a reaction, it is likely she will have to say she needs an ambulance and is having a reaction.  Especially if she is sitting in a large lecture hall or somewhere in the back. 

But, I'm sort of thinking that even if she has a plan, on file, and the disability office says something, doesn't your DD really want to talk to the teacher herself anyway to make sure they understand? 

Plus, if your DD is sitting in class, and she does have a reaction, I can't imagine an entire room full of adults sitting there and watching someone die in front of them.  I mean, I could have imagined that given the school my older two kids went to for elementary.... but..... college? 

Lastly.... just trying to gauge something here.... has your DD had a reaction to someone eating a food sitting next to her?  I was trying to see what her FA's were.  What she is dealing with?  I can't see it listed. 

At this point, she has nothing in hand to state that her teachers are even aware of allergy, not to mention her severe asthma.

Nothing is stopping her from telling them herself though.  This is sort of the leap that we are having to take with DS1 going to college. 
 
She is not living on campus, as we only live 25 minutes from school.

So she is still living at home and will be commuting.  What are the hours like for school?

Am I wrong to feel so shocked over this? This isn't all new to us, she went into shock at 18 months, we had to file a complaint with the OCR when she was 12. I feel like we are starting from square 1 with this college.

I don't know if you should feel wrong about being shocked.  There are a bunch of us with kids either in college or heading off to college this year.  My DS1 for example is headed to college, living away from home, with PA/TNA, we had a 504 for public school, and dealt with aggressively hostile administration, teachers, parents and students while he was in public school.  We also filed a complaint with the OCR for our DS2 when he was in 3rd grade.... he was at the same school... with the same awful people.

I sort of think you don't necessarily have to view it as starting over with college.  It is different.  DS1 contacted the Disability Office for his university for housing accommodations.  The documentation we submitted was incredibly minimal compared to what we had to submit to the elementary school to prove that he had food allergies... and that they were deadly.  DS1 got his housing accommodation easily after the woman called him to confirm the paperwork that we submitted. 

Inherently, I think that colleges aren't there to thwart the students or disbelieve them, but I think they expect that the student will say something. 

I absolutely believe that if your DD's school says she should come up with a plan in tandem with the Disability Office, then that should be possible.  There should be an informed person.  However, having dealt with, for years, people who knowingly undermined and endangered my kids, with their allergens, in their classrooms, it is possible to have your child come up with a standard of self-vigilance that helps keep them safe while you fight through the system.

One of the things that I would tell my son is that we will absolutely support him if he feels he is unsafe, needs to remove himself, and somehow someone thinks he should be penalized.  If indeed your DD needed to get up and leave, not just move her seat, or ask the person to not eat the kit kat next to her, she should feel supported in doing what she needs to do for herself. 
Title: Re: New College has no clue about PA
Post by: gvmom on August 15, 2017, 09:19:54 PM
BTW, I wanted to add, that somewhere on the other college thread, I do have my own freak-out too about my DS1 going off to college.  It is a big deal, and I don't want you to think I'm being blasé about anything.  I also asked about who should be contacting the school, and was told that the students do it.  And, they were right.   

I would also say, that it has been an adjustment not approaching everything for college in the same way we had to during the 504 years.  I automatically go to starting to prepare for making a case like I'm presenting to the Supreme Court like we used to have to.  I have to remind myself that I can start from the premise that there are some people that are human, and being helpful is actually something they want to be.  It is hard to remember to start at that place. 
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 15, 2017, 10:41:12 PM
BTW, I wanted to add, that somewhere on the other college thread, I do have my own freak-out too about my DS1 going off to college.  It is a big deal, and I don't want you to think I'm being blasé about anything.  I also asked about who should be contacting the school, and was told that the students do it.  And, they were right.   

I would also say, that it has been an adjustment not approaching everything for college in the same way we had to during the 504 years.  I automatically go to starting to prepare for making a case like I'm presenting to the Supreme Court like we used to have to.  I have to remind myself that I can start from the premise that there are some people that are human, and being helpful is actually something they want to be.  It is hard to remember to start at that place.
YES. Thank you.
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 15, 2017, 10:51:36 PM
Ok, so do you all think DD should just go ahead and email her teachers...without waiting for the Disability guy? I mean we are thinking what is the chain of command...if someone has to call 911 WHO will make sure her parents are notified?

DD is gonna ask the NP to show the teachers how to give an Epi..is they have to. DD has never had to do it.

DD is just feeling "not prepared" after such great written plans for her 2 years in 2 different community colleges, if you can understand that.
Also, because she has no meal plan (I know accommodations would HAVE to be made there) what else is she entitled to, in college---the short of it.

She had a reaction last year to smelling Thai food behind her(peanut sauce) and had to leave class, take Benadryl and be observed at the clinic for several hours. She broke out in hives all over her face and hands (the skin that was exposed).
Her info on the form (that every other college has) says she cannot smell peanuts/peanut dust and that her severe asthma will up the chances of a severe reaction.
-sigh
Title: Re: New College has no clue about PA
Post by: gvmom on August 16, 2017, 11:23:46 AM
So, I keep reading your last post and thinking.  I think this needed to be sort of one of those bits of information to know first about what has gone on with your DD:

She had a reaction last year to smelling Thai food behind her(peanut sauce) and had to leave class, take Benadryl and be observed at the clinic for several hours. She broke out in hives all over her face and hands (the skin that was exposed).
Her info on the form (that every other college has) says she cannot smell peanuts/peanut dust and that her severe asthma will up the chances of a severe reaction.


That is a full stop sort of thing in my mind.  As in, it is causing me the most difficulty in trying to figure out what I would do because that is a whole other level of things to me.  And, that it happened just last year.  So, in a college setting.  I want to think on it more.... and I also would be incredibly interested what others might think should be done as far as accommodations given those circumstances.

With regard to parent notification..... does she have a medic alert bracelet?  Does she have a card in her wallet that says something about emergency contacts?  It may be that notification might be by emergency personnel rather than by the school.  Not that the school shouldn't contact you.... but.... I also likely wouldn't depend on it just being left to them.  Colleges should have emergency contacts though anyway.  Maybe ask what their procedures are in case of emergency?

Has your DD never had to administer an epipen or is it that she has never had to be the one to show teachers how to give one?

And, again, I can definitely understand not feeling prepared ... and in your DD's case, given the above circumstances, I can imagine she could be petrified. 

Did your DD actually talk to the nurse at the school, or had she just reached out to her via email?  I'm wondering, if your DD communicated that incident that happened, if the nurse might help her figure out what to do.  The nurse should theoretically have a better understanding of what those circumstances actually mean, and be more motivated by the seriousness of the situation to make sure something is done quickly.

I really hope others chime in here.   
Title: Re: New College has no clue about PA
Post by: PurpleCat on August 16, 2017, 03:00:03 PM
:grouphug:  I honestly do not know!  We did not go through that department for college.  I hope you get some answers and seriously, dude!  Do your job!
What department did you go through?

For dorm assignments, I forget who DD contacted in housing and requested a double room and our allergist wrote a letter stating one roommate was much less risky than two.

She did not go random with her roommate, she found one in the facebook group last winter and they have been chatting online ever since.  Young lady has no issues with allergies and keeping DD safe.

We contacted food service directly and met with the manager during New Student Orientation and established a protocol for DD dining on campus.

DD will discuss with professors as needed depending on class/lab and risk.  She wears a medical alert bracelet at all times and Medical Alert has her history and long list of allergens.

We contacted health services directly to work out allergy shots during the school year.
Title: Re: New College has no clue about PA
Post by: PurpleCat on August 16, 2017, 03:02:48 PM
FYI - learned at New Student Orientation, there is no protocol for contacting parents because our students are 18 and up and considered adults. Hippaa laws. At the Health Services Clinic, students have to sign for each time they want their parents contacted.

Local hospital if accepting a student at ER will contact the school for information, often supplied by the school police department.  Whether they contact a parent or not is dependent on the student providing permission.
Title: Re: New College has no clue about PA
Post by: BensMom on August 16, 2017, 05:50:38 PM
I was just going to say, have your student fill out a form allowing you to get information. Our state has them online. I forget what it's called but is basically a medical directive saying you can make decisions if they can't, but also that medical professionals are allowed to give you information. We just have a copy in the file cabinet and could fax to a hospital if we ever needed to in order to get information.
Title: Re: New College has no clue about PA
Post by: ajasfolks2 on August 16, 2017, 08:32:04 PM
I have been sitting with son as he works through emails and wording of requests and accommodations for first year of college.

I am not doing the e-mailing or calling.

He is slowly taking the reigns and I must let him.

His horses.  His carriage.

But I won't lie:  it has been very hard to let go.


I believe this is hardest transition for us food allergy parents.

Hang in there. 
Title: Re: New College has no clue about PA
Post by: GoingNuts on August 17, 2017, 06:46:56 AM
I have been sitting with son as he works through emails and wording of requests and accommodations for first year of college.

I am not doing the e-mailing or calling.

He is slowly taking the reigns and I must let him.

His horses.  His carriage.

But I won't lie:  it has been very hard to let go.


I believe this is hardest transition for us food allergy parents.

Hang in there.

So, so true.

Wackattack - I really have nothing to add here; DS started emailing the Office of Disability Services a month or so before school began and he really took the lead. And fortunately, he had no problems. 

He's starting his second year of law school in a few weeks and lives in an off campus apartment with 3 other guys.  They are all amazingly chill about his FA's.
Title: Re: New College has no clue about PA
Post by: gvmom on August 19, 2017, 11:11:18 AM
I was wondering if there were any updates? 

How is your DD doing?  Was she able to speak to anyone or feel like there is at least movement toward something that makes the situation better?
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 19, 2017, 02:06:33 PM
UPDATE, first the Good.
DD went to see the school nurse (NP, actually) who was awesome. She took her to a private room and asked if she had heard of FARE (she had the FARE forms laid out and well as an Action Plan). Well, DD just started laughing....sure her blood pressure went down a lot. She gave the nurse copies of her Action Plan, as well as her plan from her previous college. The nurse said they stock EpiPens right there!
When DD gently told her about the "in the dark" disability boss, and the fact that he said there was nothing she needed to sign....the NP just rolled her eyes and said OF COURSE there are things for you to sign! So, she gave her forms to sign..release forms in case EMS was called. All calls are routed to the campus police (who have an actual police station on campus) who then direct EMS to wherever the student physically is. DD absolutely loves this woman :heart: The lady also said to please go through her for any issues and had DD sign a form stating that should the present Disability man RETIRE (think she was hinting) that she would be the main contact for DD and any issues. She gave DD her phone, personal and office and said to come to her for ANYTHING at all.
 Now, 24 hours before that. DD sent the Disability man a bullet pointed paper stating what she needed done by Monday. Well...he did it all and then some! He sent a long letter to the teachers and students stating that this was a life or death issue and that is a RECOGNIZED disability---waahoo!!! He also stated that PA is a "hot topic" in the disability world, right now. Sounds like maybe HE googled a bit.
Anyway DD is ecstatic now, calm, feeling secure and looking forward to school on Monday.
Title: Re: New College has no clue about PA
Post by: GoingNuts on August 19, 2017, 02:22:58 PM
That's wonderful news.  :thumbsup:
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 19, 2017, 02:36:01 PM
Now, the BAD and I am in shock.
DD faxed her allergist her old school plans as well as her old action plan and a new action plan for her allergist to sign and fill out. She then called the office to confirm receipt and to say they as soon as it was ready, she would be in to pick the forms up. They said "of course". Well, Friday she got a call from a campus of her former college that she had NEVER been to, whom had received her paperwork from the allergist...today, the local library (where DD has faxed her forms from) called to say she has 7 pages of forms from the allergists office :rant: Can we say HIPPA??? The forms have been sitting at a public library since Friday at 3pm.....and 4 pages are missing. Just WTH?? You don't blindly fax things to whatever fax number it came from when the person faxing specifically stated that she would pick them up (as she had no fax machine of her own).
 So, her medical info has been at a public library and some pages are even missing. I feel like someone should lose their job over this. I have never been so mad in my life. Her social security number was NOT on the forms, but her med.info was, her address, her phone, my phone, etc. What should DD so?
Title: Re: New College has no clue about PA
Post by: PurpleCat on August 19, 2017, 06:15:07 PM
The good news is fantastic!

The bad news is outrageous.  And I do not have a clue what she can or should do about it.
Title: Re: New College has no clue about PA
Post by: gvmom on August 19, 2017, 06:16:35 PM
OH FU@#!!!!! 

OMG!  I am in shock reading the BAD.  My mouth dropped open. 

Has she gone to the library to actually see what they had?  Looked around, on the floor, under tables, asked every possible employee & volunteer if they picked up any of the pages?

And, totally someone should be toast over something like this.  I'd also want to know if they faxed her stuff anywhere else. 

At least the GOOD news seems to be actually FANTASTIC!  Which... it really is fantastic! 

Good grief though!  You all are going to be exhausted with the stress of these things by the start of school.....
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 22, 2017, 12:45:57 AM
So, DD and I went to the allergists office today.She gave them the forms that were NOT filled out and said "we will just wait here until the Dr signs them". The lady was very nice and of course, THE MOM in me came out, very gently.....and told her what had happened with the faxes. I told her that after being a nurse for 20 years, I was pretty sure this was a huge HIPPA violation and she said "oh yes it sure is" and handed me the phone number to report it. It was as if this happened every day!
 Anyway, I thanked her and we took a seat. The forms were filled out within 5 minutes. So now, I (actually DD) needs to call this number and report what happened. I'm just sick about it. I would have lost my job, pronto,if I would have done such a thing. My husband swore....which he never does. I'm trying to stay focused on the GOOD news and just deal with the BAD that happened. What a mess....I'm still in shock.
 Thank you all so much for being here for me. It means a whole lot.
Title: Re: New College has no clue about PA
Post by: GoingNuts on August 22, 2017, 05:52:50 AM
GGA, I would have lost my job over that as well.    Unreal.  :disappointed:
Title: Re: New College has no clue about PA
Post by: gvmom on August 22, 2017, 10:12:15 AM
So, wait..... some of the forms that had been sitting at the library were actually not filled out?  Is that good?  I mean, if you know the bundle of forms that were sent, if some were not actually filled in, were those good ones to not have filled in?

I'm sort of trying to grasp at some teeny tiny possible good anything .....

And, uh..... yeah, are they used to violating HIPPA?  You'd figure that she might at least have to say "hold on a minute, let me call HR to figure out who you should call to report that" or fumble around to find that number for a few minutes.

How did your DD's first day of school go though?  That was yesterday right? 
Title: Re: New College has no clue about PA
Post by: wackattack69 on August 22, 2017, 10:52:12 PM
So, wait..... some of the forms that had been sitting at the library were actually not filled out?  Is that good?  I mean, if you know the bundle of forms that were sent, if some were not actually filled in, were those good ones to not have filled in?

I'm sort of trying to grasp at some teeny tiny possible good anything .....

And, uh..... yeah, are they used to violating HIPPA?  You'd figure that she might at least have to say "hold on a minute, let me call HR to figure out who you should call to report that" or fumble around to find that number for a few minutes.

How did your DD's first day of school go though?  That was yesterday right?
The pages that were missing were the ones with her/mine/her dad's info on them. Phone number, diagnosis, medical history, etc.  We are just sick about this. She did ask as the library if she could look around and they said "sure" but assured us that it was cleaned every day and they don't leave things lying around. The pages they did give us were stapled together, but who knows where the rest are??
Her first day was absolutely GREAT and she was so happy. She always stands up and tells everyone about her allergy, rather than be "the mystery" person. They had signs on her classroom doors ("no peanuts in this room, please") and it could not have went better.
 We may hold off on calling/filing a formal complaint as DD has her yearly allergy check up on Sept 5th and as there are limited allergists in this city, I want to get that done first and THEN file the complaint. I have a feeling they won't want to see her, after we do--thoughts on that would be welcome.