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504 and H1N1 issue- what would you do?

Discussion in 'Parents of Children with Type 1' started by butterflybeez, Oct 1, 2009.

  1. butterflybeez

    butterflybeez Approved members

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    Hi Everybody,

    I have an unexpected issue with my children's school system and am unsure how to (if at all) proceed.

    I have 2 type1 children in elementary school (5th and Kindergarten). I am extremely fortunate to have an outstanding school nurse (she has been with my 5th grade son ever since he started K). I trust her completely with my kids. The principal is wonderful and accomodating and the guidance counselor is warm and friendly.

    Last week, my Endo sent out a letter to all of his type 1 parents expressing his grave concern over the impending H1N1 flu with recommendations to vaccinate ASAP and to make provisions to the 504s. He recommended that the following paragraph drafted by ADA be included:

    "The school nurse or school administrator shall notify the parent if student and/or school staff have been diagnosed with the flu (or another contagious illness that presents a high risk of complications for children with diabetes) so that the parent and the child's health care provider can determine whether the student should stay home from school in order to avoid exposure. Upon request by the school, parent shall provide documentation from the child's health care provider advising the student to stay home. The student shall not be penalized for related absences and shall have access to the same alternative education services as would be provided to any other student who is medically required to remain home under similar circumstances."

    Later in the letter he again states, "We strongly recommend that you contact your child's school to have ther paragraph added to your child's 504 plan and make certain that you will be notified if and when a swine flu outbreak occurs at the school."

    I trust my endo and have worked with his team for 10 years in managing my children. I immediately contacted the school and requested that the above paragraph be added to their respective 504s.

    The nurse, principal and counselor all immediately agreed, but I found out yesterday that when it was sent to central office, they consulted with the school system attorney and the paragraph was rejected. They said they could not tell me if anyone at the school had the swine flu as it violates HIPPA (sp.?) laws and additionally, If I pulled my kids out their absences would be considered unexcused despite the doctor's directive.

    My nurse, principal and counselor seemed extremely embarrassed and assured me that I would "know" what I needed to know regarding the school's "sick status".

    So...do I just leave it at that and consider myself very lucky to have a good relationship"off the cuff". I don't want to damage the trust I have built with the school team...but what happens next year when one of my children goes to middle school? I don't know anyone there- no one to get the inside scoop. I'd kind of like to have the safety net in place legally, but don't want to over-react either. I was simply attempting to follow my doctor's orders.

    What would you do?????
     
  2. Beach bum

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    We had a case in our school system (we are in a small town) and an email was sent out saying "a case of H1N1 was confirmed within our elementary schools, if you have x symptoms, we suggest you speak with your physician immediately."

    So, they weren't naming the school or the student, just confirming that it was in the school system and at what grade(not the exact) level. Personally, I don't feel that that is a violation of Hippa.

    I would speak to whoever is rejecting it and find out why it is a violation. You aren't asking for the student, or staff member to be named, nor are you asking to find out the grade. You just want a confirmation as to if it is in the building your child is physically in.
     
  3. TripleThreat

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    it only violates hippa if they tell you the names of the students with the flu, i personnally wouldn't need to know the names.
     
  4. selketine

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    I struggled with that issue myself and talked to the nurse about it. She said that she is required to keep stats on who has the flu or reports flu like symptoms (or some such thing - I cannot remember exactly how she worded it). This information is reported to the district and then to the state, etc. She said that she was allowed to share the general statistics of the school with me - so I think that would be the same for your school if she is citing federal law.

    I KNOW if I had asked that to be added to our 504 that it would have been rejected by the lawyers as well. I also have a good relationship with our school so I didn't want to "go to the mat" on this issue - which may be a non-issue - who knows? I decided to hold off for now (I don't have a rising middle schooler though).

    I know if I thought he was in danger I'd just pull him out - I don't really care what is excused or not. I would pull him out and homeschool him the rest of the year if I had to - and that is not illegal. I also think if the situation was critical and the doctor DID tell you to remove your child from school for health reasons - the school would then have a difficult time arguing with the doctor that the child could attend school. There is likely a procedure to get alternative school services for those who cannot attend (though I think it takes weeks/months to set this up sometimes).

    I'm not helpful am I?;) I think while the ADA suggested wording is great - many schools are not going to accept it. If you do want to challenge it I suggest that you call the ADA (1-800-DIABETES) and request their school discrimination packet. In there is a form to send back to request assistance - such as from an advocacy lawyer at the ADA who could offer some advice over the phone. I would be curious to hear what she would say when the schools tell us that they wouldn't accept the doctor's orders to remove our kid from school due to concerns over the H1N1.
     
  5. Sarah Maddie's Mom

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    Have a look here http://www.cdc.gov/h1n1flu/schools/schoolguidance.htm

    and note the section, about a page down RE High Risk Students and Staff.

    While it's not binding, it's a good point from which to launch a discussion of how the school plans to implement these recommendations.
     
  6. Amy C.

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    The pediatricians in my area are not routinely testing for H1N1 as it is usually mild and children recover by themselves after a few days. Most parents suspect their child may have it, but don't know for sure.

    I almost assume that anyone who is sick with flu symptoms has H1N1.
     
  7. selketine

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    Yes....that is a great idea to show them the recommendations and ask what is being done and how it would be handled. With the CDC advice (if severity is great - stay home) and the doctor saying stay home - I think the school lawyer would be hard pressed to say your child cannot stay home. The doctor's order has a lot of weight and the policies already in place for home based instruction would likely apply.
     
  8. Michelle'sMom

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    Our principal agreed to include the paragraph, but also told us that it would have to be approved by the school attorney. Same reasons as stated by the OP. I haven't heard anything else from them, but it's only been a week.
     
  9. butterflybeez

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    Thank you all so much for your replies thus far.

    I hate "rocking the boat" and am not one to provoke a stir...yet simultaneously I trust my endo...and love my kids:)

    I understand that thus far the typical course for this flu seems mild... I just worry about extenuating issues and the potential for complications with preexisting conditions. My five year suffered a severe case of RSV when she was 3 years old and was in the hospital for a week on oxygen. The doctors just shook their heads and said RSV is not supposed to be like this in a three year old. The next year she was diagnosed with type 1...4 months after testing negative for antibodies through Trial Net...again more head shaking. Then, six months later, she was diagnosed with Celiac disease...so I am a "little" traumatized by the unexpected. I am trying to stay grounded here and not be an alarmist....but that's hard when my DOCTOR is the one sounding the bell.

    Again thanks for everyone's input!!!
     
  10. momandwifeoftype1s

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    This is the wording that was agreed upon after by me, endo and school. It was added as an addendum to his existing 504 Plan. Hope it helps!

    "The school nurse or school administrator shall notify the parent if students and/or school staff in close contact with Connor have been observed with signs/symptoms of severe respiratory, infectious, or any contagious type illness that may present a high risk of complications to one diagnosed with Type 1 Diabetes. The parent, along with Connor?s healthcare provider, can determine whether Connor should stay home from school or have other accommodations at school in order to avoid exposure. Upon request by the school, parent shall provide documentation from the child?s healthcare provider with the stated needs of accommodations or necessity to stay at home. The student shall not be penalized for related absences and shall have access to the same alternative education services as would be provided to any other student who is medically required to remain home under similar circumstances."
     
  11. deafmack

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    They said they could not tell me if anyone at the school had the swine flu as it violates HIPPA (sp.?) laws and additionally, If I pulled my kids out their absences would be considered unexcused despite the doctor's directive.

    The attorney for the school district is wrong. You are not asking for private medical information to be revealed about a student or students. You are only asking to be notified when there is a swine flu outbreak within the school district itself. Here in Washington, notices about outbreaks are sent out all the time, for things like chicken pox, pink eye, etc. So why not Swine Flu. Just because the school notifies you of an outbreak is not breaking HIPPA Laws. You are not receiving personal medical information about another person at all by the notification.
    I have the same problem with doctors offices and using Relay. They keep telling me that using Relay breaks HIPPA Laws and it does not. Relay calls are protected by Federal law and the person cannot refuse to take them. The person receiving the call can refuse to do what the person asks but they cannot refuse the relay call.
     
  12. hdm42

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    Amy, thanks for posting that wording. I'm going to try to get it added in to our 504.
     
  13. wdhinn89

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    Unfortunateley, they can only inform you after the case has been confirmed, not suspected and at this point it is too late.
     
  14. Gaia

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    As an example, when Joey was in a lower grade, a note was sent home that a student had lice and to check your children. A student. It did not name names. It also gave a list of what to look for.

    I've already talked to the school nurses about the letter from the ADA and emailed it to both of them with the link. She told me that they were already discussing what to do in the event and thanked me for sharing it. See, one of the reasons, aside from my son, is that there is another child w/ diabetes in Joeys school. The nurse let it slip that she couldnt answer the phone right away because she had been running to the cafateria for juice. This student was having a low and his mother apparently does not supply him or the nurses office w/ snacks in the event this happens. I told her that unless it depleted our supply, she was more than welcome to use Joey's snacks for this child if he's low. So I wanted to make sure that he was able to be covered under the ADA letter too, just in case. I know he isnt mine, but I dont think Id be able to sleep knowing I could help this child and didnt. Whether its by protecting his rights or helping the nurse treat a low.

    I think Im very lucky w/ the relationship I have w/ Joey's school. Im just worried about next year when he starts high school.
     
  15. momandwifeoftype1s

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    You're welcome! It's worked well because it doesn't specifically mention H1N1, so no Hippa violation.
     
  16. chbarnes

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    My wife had H1N1. Both kids had similar symptoms but were never tested since they had no fever. They contracted the illness at a summer camp and she caught it when she went there to pick them up. It took a week to get the results back from the test. So by the time we knew what it was the kids had been going to school for days with their "bad colds."
    I went on Tamiflu and never got sick. We don't know of anyone else who got it at school, so the kids probably didn't transmit it.
    In short, the school isn't going to know whether there are any cases of H1N1 anyway. Testing has already been largely abandoned in our area, and I think nationwide.

    Chuck
     
  17. hawkeyegirl

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    We are "next door" to Chuck in Illinois, and they are not testing for H1N1 here anymore either. They've basically told us that we should expect Jack to be exposed to H1N1 and the "regular" seasonal flu at any given time, and that he almost certainly already has been.
     
  18. Flutterby

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    you can tell the school its not a violation of HIPPA laws to tell you that the flu is inthe building, they don't have to give you the child's name, they don't even have to give you a grade, just simply tell you its in the building. That is no violation at all.. they do it with head lice, the seasonal flu, strep.. they can do with with H1N1 as well.
     
  19. LJM

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    Because of the flu I had it written in to his 504 that he did not have to check in with the nurses office during any outbreak (or ever for that matter) unless he needed some medical assistance. Of course, that is where he loves to test before lunch as he can hide away and get fussed over. I am just trying to convince him to stay way away from the nurses office.
     
  20. Kaylesdad

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    HIPPA protects a student's/patient's identity and has nothing to do with the presence of a pandemic virus at a location unless revealing such information would single out an individual's identity (Like saying apartment 123 which has 1 occupant). Your doctor has forwarded a precautionary warning of the potential danger that H1N1 as it relates to persons with diabetes, you are asking for neither the identity nor demographics of a student with a medical condition, just that the condition is present in a location having nothing to do with HIPPA. The CDC recommends that children with diabetes who have been in contact with anyone or any location with confirmed or suspected H1N1 initiate a regimen of viral medication (Tami flu) as a prophylactic, how are you to follow this recommendation if the school keeps the virus's presence a secret. Your schools solicitor is wrong and your school will be negligent if they continue to stand by their decision.

    Rob O'Donnell
    Diabetes School Advocate
    Lackawanna County Pandemic Planning Council Member
     

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