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We have a person who started out as a foster child of ours 30 years ago, this person is mentally and physically disabled with seizure disorders. This person was dropped by the foster care program when adulthood was reached. And is now considered self guardianship.. This person 47 years old now, and cannot be left alone because of serious health issues, and mental disability.. Everything was fine when I had my own business, (which ended because of the economical down our country has been, meaning lack of business). Anyways this person could go to work with me and was happy and fine where I could keep a close eye on and earn a living at the same time. Now I need work, but cannot leave this person alone. This person because of seizure activity and behavioral issues is hard to place in a adult day care or similar facility, but this person does fine at home. My husband and I have been taking care of this person's needs now free of charge for over 30 years, and we need help now. Is there anyway this person's social security can pay me to tend to her needs now. We are not asking for a lot, just something to help with the expense, she only receives a very small ssi check once a month now that covers her share of the rent and a few of her personal needs(toiletries etc). I have taken care of (have experience in) disabled (mentally and physically) folks for many years, and wonder if I could qualify for a stipend to help with her care expenses.. travels to doctors, clothing,.. my husband and I have been footing the bill for pretty much all her needs all these years because we care for this person, but it has gotten to the point of being way to hard to pay our own bills now, that I cannot leave this person alone to earn extra income. Is there anyway to get the financial help we need to continue caring for this person. It seems to be ridiculous that I might be able to get money to pay someone else to look after this person (meaning we would have to change this person's routine which is barely tolerable to a mentally disabled person), but won't pay me to do the exact same thing. This person is not related to us in any way.

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I do not understand how concurrent SSDI and SSI benefits have anything to do with what state you live in, they are Federal programs.
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What state are you currently living in? What state did you previously live in? Can you get in touch with the SS office in your previous state to find out why her benefits didn't transfer?
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All I know is we were told in the SSI office is that she cannot get disabiltiy here. I don't understand it all myself. She does not have a caseworker, that I know of, she has never had a caseworker since she was dropped by the foster care program over 30 years ago. We just went and changed her address and stuff in this new State when we got here, and found out then that is is only eligible for SSI and Medicaid. My hubby and I have done all her advocating and making sure she gets what she needs done, medically and financially all these years. She has grown up with my kids and is one of our family now. I have a POA to help with decisions on her health care and some financial. But that is it.. I was a foster care parent for disabled children, (which is how we met her) and I have been a respite care worker for disabled children and adults. We have just moved to this state, and are searching for ways to get some help with her. She cannot be left alone for long periods of time, because she is mentally challenged.. childlike in her thinking and ways, and needs to be supervised. Plus she has health issues, and is physically disabled with a very strong limp, off balance and the use of only one arm, and her speech is slurred and hard to understand most times. She can be stubborn and unruly at times, which makes it hard to get adult day-care help also, and inconsistent seizure activity even with meds. I would lose my job having to constantly go and pick her up because of behavior issues or seizure activity.. I have read about the waivers and it was during this online researching on where to start to find services for her that I found all the the complaints about the long years of back listed waiting for services. We don't mind taking care of her, she is our family, and we are not looking to put her in a group home or whatever... she is happy with us and we would like to be able to continue our care.. and let her be as independent as possible at the same time.
She is also full blood Athabascan Indian, but that really doesn't mean anything when it comes to services, we approached some native tribal offices to see if they had anything and we were told that there have been so many people needing help that it has practically bank-rupt them.. sigh! So that ended that route, her own villages do not have anything to provide, except she does get a small check (200 to 300 dollars) once a year from the group her village is involved with.. I can't think at the moment of what they are called. It has been quite stressful and getting the runaround on the phone when no-one seems to know anything.
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When you say you've read about these long waits, do you mean that you were told this about your specific situation ? I would call her primary doctor and talk to him about the fact that you are not going to be able to care for her any longer since you have to earn a living. If there is a law school anywhere nearby, they might have a legal clinic that can help you, she is disabled and has rights.
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Snowy, why can't she get disability? That's a federal program, isn't it? You need to talk to her caseworker. When you moved, did you inform her previous caseworker so that the case could be transferred?
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A 2 to 3 year waiting list?! What!! To get approved for in-home care? That is monstrous. We have harsh weather here in Minnesota, but we have decent care policies. Sigh.

Have you talked about this with her Medicaid case worker? Have you called the disability hotline?

There MUST be a way. If you said, "Sorry, we can no longer take care of this person. She must leave our house by Dec 1" they sure as heck would have to find a place for her, with no 3 year wait, and at much greater expense. This is absurd.

Go through channels first. Check with disability services. Talk to the case worker. If that doesn't help, kick it up a notch. Write to your state and national representatives. See if you can interest a newspaper or television channel in this bureaucratic quagmire.

Things like this really push my hot button. You are not trying to put one over on the system. You are providing a great service and you want to be able to continue to provide it. It is in everyone's best interest to pay you, just as foster parents are paid. Grrrrrr ...
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Yes this person is on life long medicaid because of the physical and mental disabilities. She has various Dr appointments every month, and medications that she has to be supervised in taking. Everywhere I have read about waiver programs say there is a 2-3 year waiting list. Also in a previous State we lived in she received disability with her social security, which helped (we had to move, because climate conditions were endangering my husbands health conditions) but she can't get disability here. Sigh! I am really at a loss on what to do now. :-(
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Snowydaze, I certainly hope you can find a source of compensation for the great thing you are doing. I think I'd start with the disability hot line in your area. Explain the situation and ask what options might be available to you.

Obviously it would cost the state considerably more to place this person in a care facility, and on that basis you may be eligible for some waiver program. Is this person now on Medicaid?
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