Family and Caregiver Schizophrenia Discussion Forum

Please help: how to navigate nj hippa laws

while ive found many discussions on this forum incredibly helpful, i have yet to find answers to the questions that i really need to ask, so here goes.

my (im a 29 yo m) mother (f 50) has been suffering with (the diagnosis of) bipolarschizoaffective (but the illness im mainly seeking help with addressing is schizophrenia) for about 10, going on 15 years.

… to the point:

how do i navigate the HIPAA laws in the state of new jersey in order for her family members (me, my younger adult sisters, and her parents (aged 70-80s - who she lives with)) to be involved in her treatment plan and to ensure that she gets long-term care and we can ensure medical compliance?

her diagnosis (screw that, her symptoms are serious), she also has anosognosia and hasnt come anywhere near self-reconciliation with her illness for near a decade; her various inpatient (has been 5 times total, twice this year) caretakers and outpatient caretakers have not acknowledged the anosognosia, nor have they helped or otherwise included the family with long term care plans.

this all happens under the guise of patient privacy (HIPAA), but in practice it removes the non-state caretakers from being involved in her treatment plan, and as such, we all just watch as the vicious rotation continues: shes out and okay and working for a few weeks - she starts believing co-workers (then friends, then family, then someone she can only hear and feel) are disrupting her work (then life) style, then can no longer work, and stays home, then can no longer sleep and stays awake, then can no longer be peaceful, and then threatens, if not explicit then implicit, herself then others. this cycle gets in the way of my elderly grandparents letting her stay with them - eventually, she gets so unstable and increasingly violent that local mental healthcare facilities are called and she goes back in…

in and out she goes, and i feel powerless to the whole process.
i can watch as my grandmothers disposition of overly anxious cum tyrannical (grand) mothers attempts to control her every move inadvertently create the conditions of the inverse: how the symptoms of my mothers illness can be read as a resistance to that control: if she sits on the couch and doesnt move, it is the exact opposite of what her overly-controlling mother demands of her, and of what the grandmother thinks she (my mother) has failed at doing as a person. in less words, i see how my mothers schizophrenia is an unconscious protest against a tyrannical way of being that she never consented to. in immediate words: the state doesnt care, and i need to know how to navigate these mental health laws.

can anyone help me(/us?) has anyone dealt with nj hipaa laws with an immediate family member with both schizophrenia and anosognosia? any advice? (not emotionally supportive, but pragmatic?)? please. last time she was in inpatient, i had to call her social worker 50 times (in a row, until i blocker her line and she was forced to answer) before she talked with me and gave me any useful information. i refuse to accept that (the eventual death of my mother) is just an “unfortunate” side-effect of the slowness of new jersey healthcare bureaucracy.

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Unfortunately, most people with sz also have anosognosia, it’s upwards of 65%. Some people never gain understanding of their own illness. It is a battle.

In Florida, the only way my adult daughter became med-compliant was following her 2nd arrest. While she was in jail, I spoke at her hearing. I told the judge I was her mother (while my daughter screamed at him that I was NOT her mother since she was very delusional that day) and that my daughter “spoke to beings who watched over the city and could read minds”. He immediately knew she was ill, and she immediately settled down since what I said was true to her. He court ordered medication if she were to be released from jail, at my request for medical help.

When released, she was force hospitalized (ambulance from the jail). The sheriffs wouldn’t tell me which hospital she went to (HIPPA), but I blind faxed the doctors at the nearest 3 hospitals with my input and the fact that one medicine helped a LOT in the past (a long acting injectible). I requested she be given that same shot “if she was there in the hospital”. I got a phone call 2 hours later asking me to be her health care proxy (only good while she is in the hospital and deemed incompetent), I said yes, and authorized the shot to be force given to her.

My authority as the proxy stopped the moment she left the hospital. BUT, the court order from the judge lasted a few months, until the DA dropped her case. By then though, my daughter was used to me taking her to get her shot and she never asked if she HAD to continue the shots. I never told her that her court order was over.

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@oldladyblue thank you for sharing. This information

I didn’t know or heard of a health care proxy. I will research that for my use if necessary. I admire you for your continued support for your daughter. Right now I feel as I am not doing everything I can do for my son. He is still in the hospital since May 31, and he is still very delusional. As I had stated in other responses, I am no longer his guardian and he did not sign a release so the staff can talk to me. I also know which injection worked best for him, and I relayed that to the staff at one time, but I have no clue what medications he is on, and if he is taking them. I do know there was a hearing for forced medication, but it appears that he is not getting any better. I should change my name from spanky to clueless.

@wpd489 I feel your pain, my son is now in the hospital since May 31 and very delusional with anosognosia. He was married for 5 years, medication was switched and he has declined continually since 2015, with each episode becoming worse involving his delusions and anosognosis. I was at one time his guardian, which I did not want but I was able to help him at the time. The psychiatrist that he is under AOT felt that my guardianship was hindering my son from recovery as my son blames me for everything. (his wife left him, I had to sell his home & car, SSD mandated that I am the payee, and he had a career job with a 401K that I had to put in a medicaid trust) Now that he is in the hospital, again - approximately 30 times since 2015, his medical treatment is under yet another psychiatrist (each hospital, different psychiatrist) who tries to get the right medications. I am no longer guardian - so I am clueless and unable to help him. Although I am glad I am not his guardian because of his anger with me, if I had the guardianship I would be able to give what has been going on since 2015. My suggestion is to file for guardianship. From reading the many post, reading Xavier Amador, Ph.D. I am not sick, I don’t need help! for the second time, your grandmother being overly anxious is not helping your mother. She might be relieved if this burden is taken away from her.

I want to add that the guardianship application has to have an expert evaluation from a psychiatrist stating that a guardian is necessary. The guardianship is also required annually to have an expert evaluation to continue. This is how I lost the guardianship. The AOT psychiatrist stated my son did not need a guardian, except for his finances. I could probably have fought it because I was told that I would have to file a motion to remove my guardianship. As we all want to do what we think is best for out loved ones, I did not fight it. Today I feel that maybe I should have, but you put your faith in the professionals hoping for a recovery for your loved ones.

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Thank you @spanky for your compliment. I was lucky that the right things happened at the right time, including my becoming strong enough to fight the HIPPA laws as I could and to speak up for forced medication of someone I dearly love who would not medicate. Please, PLEASE, do not be so hard on yourself, I am sure you are doing the best you can. This dreaded disease is like playing pick-up-stix, the combinations of factors are endless, and moving one factor can change the whole game for the better or the worse. Even the doctors and nurses and civil servants have to take their best guesses, and it feels horrible to guess, and then second guess, what should happen or what should have happened.

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