Balancing safety with privacy.

[daisy madness]

For those who don't know, I'm having big time difficulties with my child's school.  Another issue has popped up and I'm wondering if I am just so angry about everything else, that this is just seeming like a much bigger deal.

At this elementary school, all the children with allergies carry their Epipens in a very visible bag, with their name on it.  They carry it everywhere they go throughout the school.  I appreciate that the Epi is always with my child, but the privacy issue bothers me a little.  They make the bags very visible so that they are easily noticed by a delegate in the event of a reaction.

We had a difficult 504 meeting this week.  We are fighting over one huge issue.  However, I also brought up this issue and mentioned that I may want my child to wear the Epi on a belt to offer more medical privacy.  Nobody was receptive to the idea because they want the Epi to be visible to delegates.  They said that all the kids know what they are and they'll point it out if they see that someone has forgotten their bag.  They carry them up through middle school this way.    

I decided to choose my battles and let this one go for now.  My child is young and doesn't mind carrying the Epi like a giant red flag.  All the kids in the school know what these bags are for.  And he sits at the separate lunch table, so it's not like his allergies are a big secret.

BUT, the yearbook came home and there's a picture of him in the hallway with his very visible bag.  It is extremely obvious.  Not a tiny picture in a collage or anything.  I am upset that my child's medical information is captured in the yearbook.

I am not going to say anything about it at this moment, but my inclination is to wait until 2 weeks before school starts and send an email telling the school that I will be sending him to school with the epi on a belt under his shirt and that he is not to carry it around in the bag.

What do you think?  Legitimate concern or me just being so angry that I'm going to make an issue out of anything.

[ajasfolks2]

Legitimate concern.  Your child has every right to medical privacy as any other child with or without medical disability.

I'd be livid about the year book photo.

My kids HATED the obvious fanny packs even . . . the slim spibelt made things better . . . and now with AuviQ they can carry in pocket or purse.  THEY LOVE THAT PRIVACY!!! 

My kids' Medicalert bracelets say "Carries epinephrine" so that hopefully someone would look in purse or pocket to find.

School needs to train the staff as to where EACH CHILD carries his/her meds or epipen.  This is EXACTLY what 504 and individual accommodations are for!  NOT a one-size-fits-all policy that accommodates the staff.

You have every right to be extremely frustrated, even though the school is demonstrating how they are trying to keep the LTFA kids "safer".  You're going to have to continue to educate and re-educate.  Sometimes daily. 

Hang in there!

[hedgehog]

It sounds like good intentions gone awry.  But it is still wrong in spite of intentions. 

[sneaker]

Legitimate concern.  Medical Privacy!

Re: yearbook photo.  I mentioned your post to my husband and his immediate first response was, Did the school do it on purpose? 

When my son was in preschool...this was about ten years ago, wow!...they gave out some sort of recipe book of cooking they did in class.  On one of the pages, they write under the recipe that my son did not eat because he was allergic.  This was handed out to the whole class.  I was very upset as I value privacy. 

Your child's school might be trying in their way to keep the allergic kids safe but i would think you have a right to medical privacy.  This sounds like labeling.  They should find another way.

One possible solution for issues like the yearbook photo for next time.  My kid's school district has a form you sign at the beginning of the year if you approve or not, the school district printing, your child's photo, name etc. in places.  You could check not approve if your school has this form.  Of course, then they will find something else to do wrong!

[sneaker]

More thoughts....

When you do approach the school to tell them your child will be wearing the epi on a belt and not carrying in their visible bag...if the school gives you a difficult time, maybe In addition to mentioning privacy and individual plan,

Maybe you could try to explain to them that as your child get older, middle school, it could be not good, could cause problems, if every kid knows your childs LTFA issue.  Hopefully they could understand that?

When you wrote that the kids are carrying this visible bag through middle school, did you mean in middle school?  I think that is wrong to force that at that difficult age.  Talk about setting up for bullying!  Not every kid could handle carrying a bag like that in middle school.  I understand FA safety but that school bag just sounds wrong.

[daisy madness]

Yes, they carry the bags up through middle school. A parent told me that they just plop the bag on top if their books as they're walking class to class. 

It's going to be tricky b/c our state regs only allow for self carrying if the child is permitted to self administer. The school seems to be currently unaware or ignoring that reg. If I make an issue of it (as I've successfully managed to piss off the nurse and I'm sure some other staff members lately) the self carrying thing may no longer be allowed. 

[sneaker]

If it comes to your child does not self carry, then one plus is that you really have something to say to school to take that epi bag off of your child and they would have to come up with another Individual plan.  Someone to hold or store, with access, your child's  epipen, some other way for them to notify staff of your child's LTFA.

Not trying to advise what you should do with self carry, just pointing out if it comes to non self carry,  one positive part of it.

[sneaker]

A lot of posts from me today, sorry.

Just to clarify, with self carry the school still needs to do an individual plan for your child. What I meant is that if you are told no self carry, it just might be easier to get them to understand that they must do an individual plan since the epipen bag would not be an option.

Ok, enough from me, and

Good Luck to you!!!

[yelloww]

In the midst of what you have going on, I'd let this one slide for now. I'd inform them that you saw the photo in the yearbook. That you believe the picture violates his medical privacy, and that you expect next years photos to be edited before the yearbook is published. If you signed some release for them to take his photo at school, they may not have thought twice about the medical aspect of that picture.

I wouldn't mess with the self carry situation- you WANT him to self carry in middle school. Don't inadvertently take that away from him by asking the wrong question at the wrong time if that makes sense. You just want the method for self carry to be different for your child. There's nothing wrong with that. Find a way to address the method in which is meds are carried, then add that to your plan when your plan is revised next.

[Macabre]

What yellow said. Do being it up. Use the word FERPA, but don't change the status for now.

Before DS had a 504, he had a bag that he carried to specials, PE, etc. He sometimes lost it.   standardizing this probably keeps some do that from happening. But Yowtch--through later elem and middle school?

DS used an epibelt in later elem. He was very conscious about it. They had to have shirts tucked in. They had to in MS and well, but the Spibelt was less obvious. He could make his shirt balloon over it a bit. He got to the point with the huge EpiPens that he just carried them in his pocket, as he now carries the AuviQs. He LOVEs those for privacy (we keep pens in the nurse's office).

Just mentioning this to note how we handled things differently as DS got older and to note how kids' needs change.

I'd document the picture and then save this issue for when he gets kids and cares.