Sister Schizophrenic. NEED HELP!!!

Hello everyone,

My sister has been battling paranoia schizophrenia for the past 10-13 years now. As there have been a few flare ups, for the most part, her schizophrenia has been sustained through the use of medication which is clozapine. However, just recently, the clozapine has stopped working and does not seem to work as it should and as it used to previously. Now, she is hearing voices and acting on them. She has lived at home with my brother, my mother, and I, under our supervision. Once an avid screen writer she suddenly "fell" into one of her stories and hasn't been the same ever since. She is such a sweetheart and is religious as well. Her faith in god is so strong but throughout her life, no matter how much she prayed or how much she believed, she never got her way. She's not the type of person to harm anything on purpose and even the voices that bother her aren't of evil nature. She reads the bible everyday and is a little slower than the average person, but has the heart of an angel. I need to find her a place where she can get medical attention. Private insurance won't seem to cover it and county board-in cares are crap.

MY QUESTION TO WHOEVER IS OUT THERE...

I need to find a way of figuring out a living situation for my sister. Whether it be programs that she attends from morning to night or whether it be a living situation. As me and my family gets older and its starting to get harder and harder to keep up with her illness. She needs medical attention. Whether in the form of a residential care or daily program. After seeing county board-in cares, I don't think i can feel good about myself leaving my sister at a county boarding care where they're level of treatment and care is very low. Does anyone out there happen to know if there is a place where i can get like funding support for her or perhaps a scholarship type fund to pay for her care at a somewhat decent residential care? I've tried everywhere and can't seem to figure this out. I am hoping that maybe this forum can help me a great deal in my unsolved questions. Thanks.

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Hi Dkim,
I have a family member who was diagnosed schizophrenic in their twenties, also. At that time he was hospitalized against his will for a limited time, after an apparent suicidal behavior. He was then released to day treatment and outpatient treatment for psychotherapy and medication management. He has had many ups and downs but has improved over time and now is working. It was a few years ago that last time he had a need to be hospitalized, but again the process at least here in my state, is always a limited time in hospital psych unit, then day treatment, then outpatient.
His private insurance from his work has covered this treatment, with a possible deductible or copay for going in through the ER of a hospital. But they can and will treat someone and bill them. I'm not sure if your state is different in any of these ways. I did not think it was. Have you gone through the process of taking her through the ER? Why won't her insurance or medicaid pay?
Wrk

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Hello wrkradvct,

Thanks for your reply. Her insurance currently does pay for things like hospital visits. She has been in and out of the hospital quite a few times within this past year (a total of 30 days so far). However, even as she is in the hospital, she is not getting better. The doctors have tried already 3 different drugs on her, including the "golden standard go-to" drug that schizophrenics eat. Nothing seems to be working as of right now, which brings me to the thought that if ABSOLUTELY nothing starts to work, then we have no choice but to put her into some kind of professional care for the rest of her life. Whether it be a board in care or residential care. We are covered through insurance on hospital visits and ER visits, but when it comes to someone spending an extended amount of time in a residential care type facility, I can't seem to find funding for it. These residential cares that has a doctor on site and a nursing staff usually run anywhere from 5k - 13k per month per patient. I do have the option of having her go to a county hospital and a county board-in care facility that would be covered by medical, however I don't feel too great about leaving her with the county staff or the county hospital goers. I've visited multiple county board-in cares and its sad to say but, its almost a place for people that have been dumped by their families, have no families, and have no other choice but to recieve the care they can get from medical. Of course, this can be an option for us if we have no choice, however we do have jobs and don't mind paying for a little bit of a better standard of care for a facility, however, 13k a month is just too much. So, I was wondering if there is any kind of program, that might be non-profit funded or government funded for people with schizophrenia that i might be able to apply for my sister to get her into a higher level of care.

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Hi dkim,
Again I'm assuming that the state of mental health care in CA bears any resemblance to that in MA. And I acknowledge from my experience the amount of continuity and coordination between inpatient care and outpatient care is very limited. But I think the idea of de-institutionalization is that inpatient care is mainly only to stabilize a patient, and then they should hopefully be ready to benefit from highly structured (a.k.a partial hospitalization 'day program,) care and then eventually to live in community and have outpatient care. Has your sister been through these sort of cycles? It can definitely take more than one cycle, and it is very stressful on the family, I admit. But are these hospitals releasing your sister to any kind of structured program, or just home?
I have seen a post on here recently where someone had a family member go to inpatient unit, then to structured outpatient and back again, all within a month or two. But the cycles do get longer and more spread out.
Wrk

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I also have a sister like this and I am the only one able to help her if you can call it that. If she didn't live with me, I know she would be on the streets dead. She has always lived a tormented life and talks about not belonging in this life. As awful as it sounds, to me sometimes I think she would be better off and then she starts to get better and things go good, until the next episode.

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Hi, I'm sorry to hear that your sister's medication is not working for her. I understand the pain of trying to decide what do figure out what do on finding a day program with/without in being in a living situation. Not know what state you live I can't be more helpful at this time about what I can say about county boarding care which I know I haven't heard of in Nebraska (where I live). Have you looked into Supportive Housing? Have you or your family applied for social security benefits for your sister? This would be the first start with helping fund what care she would need. Social Security prefers online applications. I can't stress enough is having documentation, documentation, documentation. The less that social security has to look up the faster the progress of the application.
Look into county mental heath center in your area. They most often offer case management which not only will help your sister but also your family. Case management can help with looking into applying for social security and a living situation. Personally, I think you, other family members should apply for social security benefits. I don't know why I feel that way but I do. Oh, you might want to have a lawyer who specializes in social security cases which I'm not sure if you can get one while applying or after a denial. Hopefully a denial won't happen. And for all I know, maybe your sister is already on it.
You have a valid reason to be concerned about not wanting your sister living in a county board-in cares. Also watch out for Assisted Living Facilities that mainly have mentally ill people living in them. They often are run poorly, which again depends on the state you live in. I have read some horror stories about some in Florida and in Nebraska there are some that are bad.
With a lot of research you can find a place for your sister. It may not be the ideal place that you want it to be but you can look for the best that is affordable. Look at everything about a place, any reports by the state or Disability Rights (your state) to see if they know of what places have had problems.
Supportive housing is one that is said to be good.
If having to make the choice the of assisted living, make everything no matter how little it is that is covered in the contract ie: do they do the laundry, what do they supply as in personal - soap, shampoo, conditioner, toothpaste, toothbrushes, make sure to cover everything that will effect your sisters life. Staying involved in her life once she isn't living at home will be of great help to her. Change is scary and moving to a new place can cause symptoms to be triggered.
I want to share with you that I have schizoaffective disorder. I have lived in assisted living (though not called that back with I lived there) 30 years ago. My mom applied for my social security and I got it on the first try. She had all the documentation which why I stressed having it when applying.
My parents had to make a decision that wasn't easy for them when I was 20 years old (I had been actively ill for a few years at home) that it was time for me to move out or I would not grow. I didn't see it that way at the time. It was a good thing for me and with my ssdi I able to take care of my bills and do ok in life. My parents also knew that having me live at home until they were no longer able to care for me was not helpful to me nor them. I needed to have life experiences that I would not have had living with them. I now can rely on myself for all that I do and my parents do help me out with clothing when needed. I realize that I jumped around a lot on the subject I writing about to you. It is currently how my mind is working. I hope that some of the ideas work.
If you need more info you can send me a message. I have a lot of information on the topic.
CuriousKat

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