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How difficult will it be to remain a partner in my daughter's care once she turns 18?

Discussion in 'Parents of Teens' started by maryellen816, Nov 3, 2010.

  1. maryellen816

    maryellen816 Approved members

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    I am concerned about the healthcare privacy laws roadblocking me when she turns 18. Where will we run into problems and what can we do about it. Is there anything we should be doing now to pre-empt the problems or am I just going to have to deal with each one as they pop up?

    She may be going to college several hours away. What can I do to make sure I am notified if she would have to be hospitalized and what can I do to make sure that I can be there and help manage her diabetes care. If she is conscious, then ok, she can give permission but what if she isn't. Sad to say, but hospitals are my biggest fear, because I don't trust them to care for her. (How ironic is that)
     
  2. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    How much does she want you to be there?
    Does she wear a medicalert bracelet? Does it have your phone number on it?
    I'm going to assume that you're her next of kin- keep that in mind. It helps.
    She can also write a living will in which she authorizes you to make medical decisions while she's unconscious.

    It is my experience that doctors think of a person in the 18-21 age range as children if the parent is present. Which in my case is a big :(:mad:

    If I could think of a person I trusted to make medical decisions I would like, I would write a living will. I think they are great to have, especially since I think my parents are not under any circumstances to be trusted to make medical decisions for me. But I don't have anybody I do trust.
     
  3. dianas

    dianas Approved members

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    My daughter does not have diabetes but we are dealing with a couple of other complex medical issues which are chronic. Things got real interesting when she turned 18. She's 20 now.

    First I did ask her what her wishes were. She wants to be independent but to have us as backup when needed. If your daughter wants your continued involvement in her health needs your daughter needs to sign a release of information for every single provider she sees. PCP, all specialists, hospital, diagnostic imagining, laboratory, etc. My daughter has done this and it has made life a lot easier. I also have found that most places will not even let you make an appointment without the release.

    When I worked the hospital the only person who could make decisions was the patient if they were capable, legal next of kin if they were incapacitated or the person with durable power of attorney for medical decisions. That was it. In the event that family could not be contacted dr's followed hospital protocols.

    The only place that 100% of the contact is daughter only is her college. This was true even before she was 18 and in Running Start. She lives at home though and commutes. She has emergency contact information in her wallet.

    If your daughter doesn't drive also make sure she gets some sort of official ID before she turns 18. If you wait it will be a nightmare as it is a lot easier to prove identity for a minor. My daughter has a State ID card.
     
    Last edited: Nov 4, 2010
  4. Mody_Jess_Pony

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    I have diabetes and I am at university, and I cut my mother off. I'm sorry it's going to sound harsh, yes I did it. She's not my caregiver anymore, she is my mom and when you move out that relationship changes, you are no longer the one who looks after your child, your child looks after themselves and makes their own decisions, you shouldn't need access to her medical files and the fact is you aren't going to from that point on anyway . My mom is not on my authorized list of contact people if I am in the hospital. I'm 19 years old, and am in my second year, four hours from home, yes I will have someone call her, but really my Don(house mother) is the one who looks after things. As scary as it is, you have to let go at some point.
    Think of this way, someday your daughter, is going to move away, maybe get married, and you won't be her partner anymore in her D care. That is the reality. To me university is where the partnership ends in the means of Diabetes. Yes my mom still gets my supplies and sends them up but thats because I'm out of province and our insurance is a PITA, I occasionally tell her how my numbers are doing, I wear a medical alert, I set an alarm to get up and test in the middle of the night (note I was about 98% independent before I left home my mom works full time).........
    I don't want to be mean I just want to give you something to consider, ask her what she wants, but honestly the ugly truth is Diabetes is going to be with most of us for all of our lives, and we have to start living interdependently some point. Yes mess ups happens, A1C's will go up and down, but by the time your in university or college it's time for you to let go a little or a lot.


    Also talk to your daughter, don't be offended if she doesn't want you on her emergency contact list, ask her what SHE wants, and discuss the fact that she is an adult now, talk to her....thats all I can suggest.
     
  5. miss_behave

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    I guess it depends on what your relationship with your parents is like. My parents are always the first people I go to and would want with me in any medical emergency. I am independent, and can look after myself, however I feel safe and secure with the knowledge that my parents are always there for me, and our partnership will last as long as we live, both in D care and everything else.

    I have them on my medic alert bracelet and hospital file as my next of kin. I don't know how the US system works but here it means they will be contacted in an emergency and allowed to make decisions on my care if I were unable to. In the event that I am incapable, I trust them fully to make decisions in my best interests.

    To the OP, I would talk to your daughter about your concerns. If she shares your feelings then I would find out what systems can be put in place in the event of such a situation.
     
  6. maryellen816

    maryellen816 Approved members

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    We really are a team. Honest. My concern is mutual.

    Wow, Jess, you sound a little angry on my daughter's behalf. Let me ease everyone's mind about why I am asking this question and assure you that my daughter and I have talked and will always talk. She's very mature and self sufficient but she also actually likes my help and loves me! Really!

    I am sure that things are different in Canada but in the US, because of our medical privacy laws, even just the simple act of me getting my daughter's supplies, as your parents do for you, will become one of the first roadblocks that we will hit. And this is why I asked for help, so that I could find out about any tips to make things go smoother, not because I am simply trying to butt in.

    What started me thinking about this now was my son, who is 22, went to the student health center at college recently and, when his bill came it was incorrect. But I couldn't call and discuss it with the provider. I am supposed to pay it... but they wouldn't speak to me about it. So I had to set up a 3-way call with them, me and him (yes, he wanted me to take care of it - we talked ;)) in order for him to give them permission to talk to me. What a hassle. Now multiply that times insurance company, dentist, doctor, opthamologist, pharmacy, medical supply company, endocrinologist, hospital, lab, even chiropractor and not just occaisionally but constantly for as long as she is on our insurance - 8 more years likely. Now see what I am fearing.

    I think dianas explained very well what we need to be thinking about this year and how we need to deal with it. Thanks for that.

    I am still fearful for emergency situations. She does not wear a bracelet and I don't see that changing. I will rely on my daughter listing us on her wallet card and giving my contact information to her RA and roommate at college and hope for the best.
     
  7. dianas

    dianas Approved members

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    I'm glad you found our experiences helpful. It is a bit problematic in that HIPPA prevents disclosure but the parents usually take care of a lot of the medical bills. Plus when it came to dealing with insurance problems my hubby the subscriber was the one who had to call.

    Some states only police can access information kept in a wallet so that's something to think about in an emergency. Why does your daughter not like to wear medical ID? Is it privacy? Maybe dogtags or necklace would be more discreet. I am not a jewelry person at all but I have two ID bracelets from Lauren's Hope and I think they're attractive. It's not obvious it's medical ID at first glance either but not so hidden it wouldn't be found easily by EMS. Plus I don't break out as I'm allergic to a lot of metals. The magnetic clasp is awesome worth it's weight in gold. I haven't seen this company mentioned much here and they seem to be a little different so thought I'd throw it out there as possibly appealing to teens.

    http://www.laurenshope.com/
     
    Last edited: Nov 5, 2010
  8. maryellen816

    maryellen816 Approved members

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    Thanks for the link, they do have nice jewelry and the ID's are engravable. I will show it to my daughter and see if she changes her mind about wearing something. If not, I have been thinking that maybe we can stick a label on her pump.
     
  9. joan

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    My son is in the same boat, no ID. He will wear one for a week or so and then never again. Also your concerns are the same as mine. Thanks for posting.
     
  10. wilf

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    I guess when DD gets there in 3+ short years, we will offer to be as involved as she'd like us to be.

    I think if your daughter and you are agreed on how involved she'd like you to be, then the rest is just doing the paperwork.. :cwds:
     
  11. Bigbluefrog

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    Your child would need to sign a release form allowing her doctors and medical billing to consult with you.

    With college there are forms that the student can sign to allow you access to billing, and for medical emergency ...your student would need to list you as an emergency contact.

    This new privacy rules once they turn 18 is a big pain, because as parents still covering the insurance part we need to be able to consult with parties concerning bills too.

    What he discusses in private with his physician can still be confidential, but there are times when young adults need support from family. Once they get married or are independent finically they can change it. Anyway that is how I feel.

    My son is joining the Marines, because he is 18 we now are getting power of attorney for his bank and power attorney for health. Something we once could do because we are parents now we need to pay a significant fee to get documents allowing us to help him.
     
  12. Nancy in VA

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    I don't look forward to this. I don't like that I will be paying for insurance for a child and won't know what's its covering.

    As far as college, we will be paying in large part for our kids college education. They will absolutely understand that they WILL sign everything giving me rights / accesses to everything if they expect us to be paying. It WILL be a condition of paying for school.
     
  13. OSUMom

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    It is fun when they are 18. ;) The college/medical facilities like you to pay the bills, but they won't send them to you or communicate with you. :) I would recommend that if your adult child is in agreement that you pre-register and have her sign appropriate forms with any medical facility on or around campus that your dependent could be visiting. Forms that give her permission to discuss her health and be a contact.

    My son wears a medic alert necklace. We were called once on that close to midnight. :eek: Of course my heart skipped a beat. It was the rec center, but my son wasn't there just the necklace. My son went back to get it the next day.

    If possible I think it's important for roommates and friends to have your phone number also, it could be in emergency situations that they'd be the ones contacting you asap. :cwds::cwds:

    P.S. As soon as she turns 18, usually with your medical insurance there should be something your daughter can sign to give you permission to be involved with her information with respect to her medical insurance account.

    All that being said, we remained very involved with my son and his medical care. It could be that he was diagnosed just months prior to leaving for college.
     
    Last edited: Nov 11, 2010
  14. MrsBadshoe

    MrsBadshoe Super Moderator

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    To all those parents in the US with 18+ students with health issues that you and them would like you to still be involved you need to have a HIPPA release signed for each and every Dr, pharmacy, etc. that might be needed for their care. I have just started to take advantage of using this release after a problem I incured 24 hrs after my son turned 18.

    While 17 he had an MRI done. We picked up a copy while he was 17. We went to the Dr when he was 17. At the doctors it was relized that the MRI results were never transfered to the CD. It was blank. The Dr could not review and we wasted a co-pay at the DR. I ordered a second copy be made while my son was 17. I went to the hospital to pick it up on my sons 18th Bday, the following day. They refused to release it to me because he was now 18. The pick up of the orginial CD, Drs appointment, and pick up of the new copy was a 24 hr period in which my son turned 18. I understood the law but was frustrated because of the inconvenince non the less.

    Here is the link I have now begun to use because my children still request that I be invovled with their on going health needs. We aren't even to the point the Diabetic ones turn 18. I should have this release thing down pat by then.

    http://www.caring.com/forms/hipaa-release-form/free-hipaa-release-form.pdf

    F
     
  15. WendyFL

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    I have been growing concerned over this very issue the past few months. In just a few months my daughter will be turning 18 as well. I am thankful for the information shared in this thread. Thanks!!
     
  16. s0ccerfreak

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    Exactly what I was told I needed to do so my parents could speak to doctors or my college if needed. My parents have also signed release so us kids can speak with their doctors if needed and have filled out power of attorney papers.

    Our pharmacy doesn't have a problem with my parents picking up medications for me or vice versa, but we are in a very small town. I would guess this again would be something your daughter would sign then you should be able to pick up meds and supplies for her.

    My emergency list includes my parents, oldest brother, and my grandfather. If I were to be in the hospital I would most likely call friends from jdrf and ask them to stay with me. My brothers and dad are not extremely knowledgeable of diabetes, they know more than your average Joe but not enough to advocate for proper care, and my mom is fighting brain cancer.

    I would suggest she always wear a medic alert and lets her roommates and RA know that she has diabetes and what to do in case of an emergency. My roommates are fantastic at checking up on me if they know I'm not feeling well or my bg's are off. They know who to call and what to do if anything were to happen, this makes me feel safe.

    Going kind of with what Malyssa said. After I went to college I did not want my parents on my case about my bg's, when I changed my site last, or if I had enough supplies. An occasional question fine, but don't let diabetes be the first thing you ask when you see her or talk to her unless she brings it up or something seems way off. I still went to them for advice, called when I had problems, and wanted them at appointments. Now I've gotten to the point that I go to appointments on my own. I have a pump and a cgms which I think helps them feel okay with me being on my own.

    Good Luck!
     
  17. maryellen816

    maryellen816 Approved members

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    This is a very arbitrary rule of drawing a line at 18 and saying their medical information must now be private. The truth is that as long as she is financially dependent on me, she can't really be medically independent. Like Rae said (thank you for your thoughtful post) there will be things that she wants me a part of and things that she won't but I think it will be a looonnnngg while before she doesn't want me to handle the bills.


    The act of turning 18 really doesn't have anything to do with the natural maturation and separation process of moving toward adulthood and beginning to take care of her medical matters on her own. It's just a bureaucratic paperwork hurdle to get past on our more natural process of handing everything over to her.

    Also an update,

    When I called the mail order rx company, they told me that it makes no difference when she turns 18. Same with our local pharmacy (Kroger). Kroger said they weren't allowed to print out a list of all of her medicines but that is the only difference. (Not that I have ever needed that anyway)
     
  18. s0ccerfreak

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    I'm glad I could help, let me know if you think of other questions. And yes I am happy for my parents to be handling the insurance and other medical bills. I do not look forward to the day those become my problem. One thing I forgot to mention, you will need to have your daughter call minimed when she turns 18 and ask for your name to be put on the account if she wants you to be able to talk to them. They will not talk to anyone who's name is not on the account (we experienced this)
     

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