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Sound off: Refusing consent for your school nurse to call the doctor, trust is earned

Discussion in 'Parents of Children with Type 1' started by siren, Mar 1, 2011.

  1. siren

    siren Approved members

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    I was lurking at this school nurses web site the other day and read a post where a school nurse was absolutely horrified that the parent of a student refused permission for the school nurse to talk to the students doctor. So here, have a look at part of the discussion.

    [We have parents returning the form to us, with that crossed out, and we are being told by the doctor's office that they cannot speak to us, without the parent's consent. ( For example: We have questioned Epipen orders where the parents have inserted that their child is to carry Benadryl in the backpack, or contacting the endocrinologist re: diabetes care) The parents are often aggressive and adversarial, and we know they are taking advice from other moms with whom they communicate via social networking sites. From a Virginia school nurse in a county that was successfully sued over diabetes discrimination years back. ]

    [If no permission is given to contact the physician your response, in your most non-confrontational voice, is 'I am sorry I will be unable to administer this medication if I am not able to clarify the order with the prescribing physician'. Then I would give the order and medication back to the parent. I would have the principal present with the parent when this is explained.From a California school nurse.]


    Apparently school nurses are concerned about parent refusals to sign the consent giving permission to the nurse to call the doctor and are hoping to find someway to put a stop to this. I hope our social networking site would like to discuss this in a 'non adversarial non aggressive' fashion. Clearly we have a failure to communicate


    Having withdrawn consent for my school nurse to talk to the doctor of my son, I know first hand the trust issues surrounding this. Many parents have also refused to give consent to their school nurses to contact the child's doctor via the school forms.
    At one point my school nurse was literally relaying orders word for word from the assistant superintendent and their lawyer while she was on the phone with me and then my doctors office. I refused to change the orders, telling them if they wanted those changes they would have to explain it to the doctor, I did not agree with what they wanted to do based on my sons medical needs.( Besides, if they can't take orders from a parent for insulin as needed why would she ask me to change the doctors orders without consulting the doctor herself? is that safe? Kind of hypocritical?)
    Both the doctor and CDE refused. Why? Because the clearly written orders were not in need of clarification, were safe, reasonable and appropriate and followed safe standards of treatment. When clarification was needed she could call me on a case by case basis, I wrote this out,and I would decide if this was a a legit need or just hassling my child's CDE or doctor. It also became apparent the school nurse was asking for information she should have absorbed before getting her license to practice and through CEd.
    Has something caused you to cross out the signature for consent allowing the school nurse to call your child's doctors office? Under the guise of wanting to clarify orders our school nurse was seeking a change to the standard of care that was not just much lower but placed a vise grip type life over our son. While some parents are fortunate to have a good relationship with their school nurse, others experience the flip side of this.







    Assuming your doctor wrote unambiguous orders following standards of practice for diabetes etc, wrote orders that are clearly legible, and your school nurse refused them solely over the consent portion you refused to sign, did she tell you something like 'no consent for her to call means no medication for your child'? The nurse is bullying the parent and threatening to withhold care if you don't allow access to the doctor, though she has good legal orders to provide care. If she has problems understanding what is being ordered she can talk to the parent who can decide to make an exception to consent then. Or the parent could call and seek clarification themselves. The nurse could invest a couple of hours on a tutorial on FERPA and HIPAA as well.

    Is there no desire to repair damage that caused parents to refuse consent? Is it a good practice to just refuse all orders, ones the nurse knows based on her training and experience are clear, unambiguous and follow medical standards,then threaten to with hold life saving medication in a blanket fashion, in order to get the parents to sign the consent to communicate line on a standard medication form? Seems draconian to do this and even worse when those in positions of power are dragged out to the front office to further intimidate the parent.
    Addressing the underlying reasons parents have arrived at the point of refusing to allow the famously 'most trusted' school nurses to have unfettered access to the child's doctor(specifically named doctor on the form, not just any or all his doctors) would be a smart move toward earning back trust. Further, many parents are taken advantage of by those who stand to gain. Many parents are aware nurse's groups who are not employed by school districts by any contract(they are third parties)are collecting student health information via the school nurses to advance legislation or increase awareness of nursing responsibilities to political bodies and school boards for various reasons including layoff notices. They are keeping track of health information of students for third party use which is governed by FERPA regulations under third party access to student health information. Because many parents aren't well versed in some of the specifics of FERPA or HIPAA it is easier to take advantage of them and ignore identification requirements of FERPA as well as third party access. And so many school nurses are also confused or uninformed about the ins and outs of this as well so it would be so easy to violate a students privacy rights and the parents rights to refuse consent in view of abuses of these things. So I am posting links here.


    This link is a copyright protected pdf by a seasoned school nurse that does a great job in simple power point form of identifying when consent is needed but also exceptions and rules to FERPA requirements. An eye opener are the links to official letters to several state education departments who violated student privacy rights even in the recent past. California Department of Ed for example as well as Pennsylvania, Iowa, Alabama and New Mexico.

    http://apha.confex.com/recording/aph...er159619_1.pdf


    A webinar is available for parents that will help you understand the times a school nurse or district is required to get your consent for this stuff.

    http://www2.ed.gov/about/offices/lis...l#coordinators
    http://www2.ed.gov/about/offices/lis...apubhealth.pdf
    OSDFS WEBINARS


    http://www.healthinschools.org/Heal...es/School-Health-Services/Law-and-Policy.aspx

    Sincerely,
    Siren, parent of T1D who understands the value of trust and not abusing it.

    I edited this tonight to introduce things a little better. Thanks for the help.
     
    Last edited: Mar 8, 2011
  2. bibrahim

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    Wow. As a school nurse I think that yes, the nurse needs to have access to the MD to clarify orders if they are vague. First try to clarify with the parent and if there are still questions contact the provider if you have a release. There should never be more than one provider on a release. Also the releases are for a one year period or until revoked. If parents refuse to sign an release then I require them to have the MD sign the health plan themselves (take it to the MD for a signature). It is usually easier for parents to sign a release than to get the health plan signed themselves.

    I rarely ask for more than health plan approval on a release. Sometimes with new conditions I will ask for the last two to three clinic notes to help me write the health plan. I always spell this out for the parents...

    Also, if the RN doesn't understand the orders, maybe she needs training on D. There is a school nurse training called HANDS.
     
  3. Sarah Maddie's Mom

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    It's early, and I haven't had much coffee, but I'm a bit confused.

    This isn't happening to you and your college aged son, right? Rather it's a problem you see as brewing in the community as a whole? And this is sort of a PSA that you've prepared for us? Like I said, not enough coffee....
     
  4. siren

    siren Approved members

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    This did happen to us and worse. And its still happening today to other parents and children. Too many parents in the schools are afraid of retaliation and won't speak up at the time. It is easier to speak freely when your not worried about retaliation. It is a problem that continues to this day to parents in schools as we speak. Before deciding to refuse the orders, it might be more helpful to the students if the nurse and parents can resolve the mistrust that caused parents to refuse to sign for what is really an open ended consent to the doctor on the form. It would be helpful if parents were informed as to the extent the consent allows the nurse to call for specific matters or other various matters. it would be an eye opener for many parents If they knew how little some school nurses know about FERPA and HIPAA and its implications when they pick up the phone, or fax information out on the students health condition, even to third parties. Do they know if the nurse forgot to, or didn't know she had to, strip out all identifiable information when sending info to third parties such as nursing organizations, or instances when the nurse failed to remove any and all identifiable information. The students FERPA rights are violated under that scenario.
    Parents are the best advocate for their children, particularly in type 1 diabetes as they have treated it daily and they have a better grasp of exactly what is going on with the child than the school nurse. Most of the doctors orders are written as required. Most parents convey very well what the doctor needs as regards their child's management and current status, the doctor obtains information from the parent before deciding what orders to write. Parents want to trust the school nurse but have had experiences that undermine that. Refusing to sign a consent is a red flag about a breakdown in trust. it is my experience and knowledge of present issues that cause me to write this. And my son is just fine, and a college graduate. My past experience was the worst of the worst in terms of ethical and legal issues involved in school nursing care. Too often I see the most trusted profession fail to face up to the reasons why parents don't trust them.
    Regardless of the outcome of the Ca case, this has to be worked on for things to begin to change between parents and school nurses.
     
    Last edited: Mar 5, 2011
  5. Christopher

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    I just wanted to say that there are also cases where the school nurse/health care person does a great job. Danielle has been lucky in that regard and for the past 3 years has had nurses/care givers who are conscientious, caring and work hard to help keep her safe and healthy.
     
  6. siren

    siren Approved members

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    I'm glad you had a good experience with your nurse. What I'm trying to address are those instances where the nurse tries to insert herself between the doctor and the patient. forgetting that the parent and the child have far more experience at this than she does. Note that the vast majority of school nurses are very professional and very good at what they do. But when you run into a bad one the school listens to the nurse because in their eyes the nurse is the designated medical authority. Unfortunately, school nursing is unlike clinical nursing in that the vast majority of school nurses find themselves outside the primary care team. I think that when they wrongly insert themselves into the process their ego is wrongly trying to claim a seat at the table as a member of the team. Unfortunately, they are not equipped like a CDE to instruct, offer advice for kids with diabetes. it is literally beyond their scope of practice. And when these ideas collide people have problems.
     
    Last edited: Mar 5, 2011
  7. Lindy

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    AMEN!!!!!!! And due to on-going litigation, cannot reply further! :cwds:
     
  8. valerie k

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    seems like the easiest way to nip it in the bud is to talk directly to your childs dr. By telling them who they can and cant talk to would eliminate the nurse getting anywhere while on the phone.

    As for school nurses, we have the most ultimate best nurse on the planet.
     
  9. Pauji5

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    We have fantastic nurses. I'm so happy with the care that both my D kids are getting in elementary and middle school.

    That said, there is no possible reason for them to be contacting my kids endo. I, along with the endo, fillied out the health forms, and the endo signed that I make all decisions on changes in insulin dosage, etc. There would no reason for the school nurse to contact our endo.

    I don't understand why the school nurse would need to get in the middle. We currently don't have a 504 plan, but will get one for next year when both kids are in middle school.
     
  10. lil'Man'sMom

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    I am by no means an expert on this but will share what I do know.

    My 22 y.o. son (non-D) was to have some medical procedures, he needed to sign consent for the doctors to release information to me. This particular facility had a medical release waiver that has varying degrees of what information can be released. He of course signed ALL but did have the option to only release to me the information he wanted.

    Could the consent only give access to the med plan that is to followed at school, leaving all other information off limits?
     
    Last edited: Mar 7, 2011
  11. siren

    siren Approved members

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    Even if you sign the consent on the medication form, the school nurse must be the treating nurse for your child if she wants to discuss medical info of that child with that doctor. She can call and discuss your child's health, what observations about your child she has made or anything else with that doctor if she has a signed consent and she is treating. If she is just giving immunizations she cannot use that consent to cover her to make the call. She is not treating in the sense required by FERPA.

    Even with such well defined rules to protect students privacy, districts don't always understand medical record/student education record privacy rights that the nurse must uphold. In my case they both willfully ignored them as was my case and the case of many many many others. There are plenty of school nurses asked to do things by district administrations that are not FERPA compliant and they are put in a position of having to teach them why they can't compile the information they want and pass it to staff. then when third parties want the school nurse to pass along information, such as the CDC or nursing organizations there are narrow rules there as well. The fine for violating this isn't too threatening. Loss of federal funding isn't a direct enough consequence for individuals to worry much about consequences.

    examples:
    the HIPAA provider can share treament information with the school, but the HIPAA provider cann ot share other non treatment information with the school nurse if you are not treating, i.e. immunizations. ..the school cannot share student health information with HIPAA provider without the release, treatment or no treatment.

    This link is a copyright protected pdf by a seasoned school nurse that does a great job in simple power point form of identifying when consent is needed but also exceptions and rules to FERPA requirements. An eye opener are the links to official letters to several state education departments who violated student privacy rights even in the recent past. California Department of Ed for example as well as Pennsylvania, Iowa, Alabama and New Mexico.

    http://apha.confex.com/recording/ap...adf5df9fff0d3caf5cafe28f496/paper159619_1.pdf


    A webinar is available for parents that will help you understand the times a school nurse or district is required to get your consent for this stuff.

    http://www2.ed.gov/about/offices/list/osdfs/resources.html#coordinators
    http://www2.ed.gov/about/offices/list/osdfs/ferpapubhealth.pdf
    OSDFS WEBINARS

    TOPIC: U.S. ED?s FAMILY POLICY COMPLIANCE OFFICE AND OSDFS HOSTED ? FERPA AND THE INTERSECTION OF FERPA AND PUBLIC HEALTH? WEBINAR, NOVEMBER 12, 2010

    As the public health and education sectors work more closely together to enhance and assure student health, questions continue to emerge on how to appropriately share information and manage data. To help address these issues, the Department of Education?s Family Policy Compliance Office and OSDFS hosted an informational webinar on FERPA and the intersection of FERPA and public health. If you have questions, please send them to Ellen Campbell at FERPA.Customer@ED.Gov or Dana Carr at dana.carr@ed.gov.

    FERPA Webinar Presentation Documents and Recording:

    View the presentation in PDF (346KB) click here .
    View the presention in MS PowerPoint (370KB) click here.
    To view and listen to the streaming Webinar recording, click here.
     
    Last edited: Mar 7, 2011
  12. Heather(CA)

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    I don't see any reason for the Nurse to call the Endo. I want her doing what I want, not question it. My Endo would just refer her to me anyway...:cwds:
     
  13. siren

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    just wanted to thank you for your kind response. it is always better when people can work together and trust each other and the child benefits greatly. You mentioned wanting the doctor to sign the care plan so as to confirm the care plan follows the doctors orders. Many times the care plans do not follow the orders because the people involved at the district level are controlling the process. When parents carry this back to the doctor, he see's what they have done to his orders and thinks a lot less of both that nurse and the district. They earn bad reputations in the Endo offices that lead to complaints from school nurses like 'they never return my calls'. Certainly it is always hoped that everyone does as they should in these matters.
     
  14. Beach bum

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    Same here. Our endo would only speak to the nurse if we couldn't be reached and it was a dire emergency. Otherwise she would refer her to us. Our nurses also know that the health plan was created for a reason, for them to follow. If they have a question they ask me.
     
  15. Sarah Maddie's Mom

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    Our school nurses have never sought to contact our child's endo.

    In the years that I've been on CWD I've seen many posts about school nurses and I think the topic of nurses contacting Drs is one of the most rare complaints.
     
  16. caspi

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    Our school nurses have never contacted the endo's office either. I don't know why they ever would. :confused: Whenever they have had a question, they have called me.
     
  17. Heather(CA)

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    I don't remember ours actually asking either, but I have heard of it on here...The ones who would are the control freaks or the ones that can't think for themselves and don't think anyone else can either. I have heard on here of times when the nurse wont change anything without the Doc's approval. It's ridiculous.

    Now that I think about it, the one nurse we had for a short time might have, she called Seth into the office and told him he HAD to use the pen, not syringes. He was in second grade at the time. I had to straighten that one out:rolleyes: All of our other ones have been great though :)
     
  18. Michelle'sMom

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    When my dd started school after being dx'd over the summer, we had constant battles with the school nurse over her care. We were between endos at the time & under the care of our primary. The school nurse & principal had a meeting with our primary, without my knowledge or consent. Their actions not only caused more problems for us with the school, it also caused a rift between us & our primary...who is no longer our primary.

    This year we have a new school staff & nurse, who are all awesome to work with. Despite how well we get along, I refused to give consent to anyone at the school to contact our endo. Our endo's office provides clear & concise orders...basically, contact parents if you have questions. There is no reason for the school to contact our medical providers...ever.
     
  19. virgo39

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    This has never been an issue for us. Our endo provides doctor's orders that permit parents to make adjustments to ... everything. Our nurse follows the care plan that she and I developed.

    She contacted the endo with my permission once to see if the office would provide order permitting her to administer acetaminophen. Endo's office declined and she offered to contact our pediatrician, which I also consented to.
     
  20. caspi

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    This is what we have in place as well.
     

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