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.