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In September 2013 my mother's memory was failing and my stepfather chose to visit his son out of state. She was in no shape to be alone; she was bit by her own dog (???) and wound up in the hospital with an infection. (Couldn't remember to take her antibiotics.) When I called the hospital to see how she was they said they could only give information to family. I said I was her only child. They said they had no record of a daughter, only a son. (They had my stepbrother's name. We were adults when they married, this was her second marriage.) There is no question now that my stepfather's actions were deliberate. He has since moved her out of state and has no communication with me. My stepbrother and his girlfriend are caring for both of them; my stepbrother tells me my mother is getting increasingly anxious. (In need of professional assistance.) My stepbrother does everything required to keep the peace with his father. How do I fix the next of kin records? My stepfather is frail and my stepbrother is also in poor health. I am terrified something will happen to them and my mother will be lost to the system. Thank you in advance for any guidance.

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I think i would consult with local ( to mom) Area Agency on Aging about how to proceed. You can ask local Adult Protective Services to do a wellness check, as well.
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Assuming you still have your own birth certificate, it would show your mother's and father's name. You might try using that as evidence that you're her daughter to see if you can get on the HIPAA list.

Are you sure though that your stepbrother took action to remove your name, or as Carla raises, perhaps he just (deliberately) failed to include it during a renewal?

There's also the possibility of seeking guardianship for her.
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I'm not quite following what has happened here. You say your stepfather has removed your name from the forms, but was your name ever on there to begin with? I believe from my experience that these HIPPA forms are created anew with each new hospital or provider that the patient sees. I'm guessing your mother is not able to fill out her own forms, and it sounds to me like your mother's caregivers gave only their own names because they are the ones overseeing her care.

HIPPA has complicated things for families in its attempt to protect patient confidentiality. The only time I can see a provider to someone who is not on the patient's list is when they have no list, thus no contacts within the patient's family to talk to . Any family member who calls up and identifies as a family member can then become the contract person. If the providers have been given a list of contacts, they will most likely be hesitant to go beyond what they've been given.

Do you have a good enough relationship with your mother's caregivers that you can ask them to include you on the forms so you can get information about your mother? Can you relate to them the same concerns that you've expressed to us? If not, the only way I can see to get yourself "in the loop" is to show up in person, explain who you are, get your mother to acknowledge you as her daughter, and ask the hospital and doctor to amend the forms to include you as next of kin. In your place, that's what I would do.
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Another thought - research intestacy laws for your state; there's typically a family lineage which defines in what order surviving heirs would inherit. I'm thinking that it might identify a daughter as a closer level of kin than a second husband.
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Garden Artist - I wrote proper channels for Hipaa explaining my problem and volunteered a copy of my birth certificate and DNA. Hopefully they'll get in touch. I also found - and put her/us in - the National Next of Kin Registry. I researched intestate laws for all states involved and biological next of kin (a daughter or son) is at the top of their list. I have no desire to rock the boat with my stepfather, but there is little doubt he was deliberate in not allowing me access to her information when she was in the hospital. He knew I was freaked out and ready to drive up. My emotional reaction forced him to do the right thing - go home and take care of his wife. My stepbrother and his girlfriend are taking good care of both of them right now but it's obvious from his emails that she's close to needing professional care. He's older than me and in very poor health, so (in a perfect world) it would be nice to transition her to a place near me when his father is out of the picture. I used to love him so much, he has just turned into such an ornery, controlling asshat.
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My experience has been that on admission the family is asked who they want information to and who is authorized visit. they give you a number which you need to give them before information or contact is allowed. We only gave hubby and eldest daughter because they were closest and son and other daughter lived too far way. Eldest daughter kept them in the loop because i was too ill to talk and hubby was overwhelmed. Hubby has POA and of course I could tell staff who I was willing to talk to if someone called and eldest daughter is second if hubby can't do it. I really don't know who takes precedence current husband or natural daughter. i would expect step son to have not rights over Mom unless she had specifically named him. Time for legal advice
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Veronica - The intestate laws I read stated if the spouse dies, the biological child is the primary contact. Spouse first, then bio child. Carla - I'm in fairly regular email contact with my stepbrother. I did make gentle suggestions to him regarding her future care (this week) and he pretty much ignored them. Right or wrong, for now he's taking direction from his father. Taking care of my mother will be wearing them down soon, he said it's 24/7. I wanted him to know I want her here near me when it's time for a memory care unit. There is an excellent one nearby. What will be will be at this point, I just want to cover my bases. If I am on record, I don't think I can be legally ignored.
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Please, if you care about your mother, fly the 2000 miles with your Birth Certificate and go to the hospital's Patient Advocate. Tell them you have been prevented from contact with or info about your own mother. They will make you her next of kin, especially since her husband is so old. You will immediately be taken to your mother. What an outrageous situation!
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Every hospital and Assisting Living Facility has a patient advocate, case manager or social worker who is there to ensure what is best for the patient. I would seek help and assistance from them, they will be able to guide you. Another option is to file court papers to be the legal guardian or to have shared guardianship of your mother. Unfortunately most of these issues are best handled in person, if you go to the hospital and show your face you can request a family conference with the Dr, Case manager and step father and brother. I wish you the best of luck, I hope this info helps
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My mother isn't in a facility. My stepfather moved them in with his son and his girlfriend. My stepbrother is a lovely man who cares for my mother out of genuine affection - but his father has an iron will and he obeys. My stepfather is all about money and control. Women are nothing and my mother has always been a possession. My stepbrother says he married a younger woman expecting she would take care of him to the end; he never anticipated her getting dementia. (I offered to go up and help before they moved. It's clear I am not welcome.)
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