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My grandmother was in a nursing home for 10 months. We pulled her out due to poor care and she has been living with us since 1-26-2017. She is covered by Medicare/Medicaid and between both of them, they were paying the nursing home $1950 per month for her care. She has to be cared for 100% by me for bathing, dressing, teeth brushing, meals, dressing and all of her PT, OT and speech therapy. I am her medical POA and take care of all of her appointments, medications and appointments in our homes as well. She is a two person assist anytime she gets out of bed as well. My days average about 14 hours per day with her. I am a photographer and own my own business but have had to close things down for me to be able to care for her. I have been told that I could possibly get paid for caring for her by a few people I know, but I do not see the state of Ohio on the list that was provided. I have also been told that she is not able to pay me anything while she is on Medicaid and that if she did, I could possibly have to pay that back to the state. Is that true? It seemed a little odd to me that if she agreed to pay a certain amount to help go towards what would have been her normal expenses anyway had she lived on her own, that it should not be a problem. Such as: amount towards a house payment, utilities, food and so on. I don't want to do anything that is going to cause an issue with her receiving benefits for Medicaid but also am seeing that it is going to cause an issue for me to not receive income from my own personal business. If anyone has any experience dealing with this issue, please feel free of offer advice for the state of Ohio.

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There are good suggestions above.

When I see a situation of one person taking care of a senior who is reliant on someone around the clock for all of their daily needs, I ask, what would the family member think if they hired someone to take care of their LO and that hired person was going to be the sole caregiver for your LO 24/7, 365 days per year. Even if the person was a strong 29 year old, I would consider this an unrealistic attempt. How can a normal person sustain so much work and the mental strain. If she's a two person transfer, how do you do it alone? And what if there is an emergency? How would you handle that without help?

If you do attempt it, I'd try to get outside help to come in. I'd check with PACE or some other kind of program.

Does Medicaid realize that you have removed her from the NH? I'd consult with her case worker and they can normally explain what will happen and if she would stay on Medicaid Medical, though being taken off Medicaid LTC. Once that stops, the Recipients income normally goes directly to them and not the facility any longer.
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EllerySir, you are correct about the ruling but as with all things IRS it's not blanket. Here is the link to the IRS page with discussion and additional questions not raised in the original ruling. Please note that private payments are still taxable, and not all Medicaid payments are considered to be exempt. Exempt for federal purposes may not be exempt for state purposes depending on the codes per IRS themselves.
https://www.irs.gov/individuals/certain-medicaid-waiver-payments-may-be-excludable-from-income
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If you are a Medicaid paid caregiver, related or not, and the recipient resides with you, in your home or theirs the wage is 'exempt'. That is called a third party or 'vendor payment' and wage is exempt from federal tax.
IRS bulletin 2014-7 is a good place to start research. It is deemed as 'difficulty of care' and adult care is deemed the same as child care. State administrative codes also cover the exemption of 'third party vendor payments'. (good search term for your state research). It is not generally understood or applied by the state agencies because it is way deep in the codes.
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VBaker, even if you do find a program that will pay, it doesn't solve the problem of you doing the work of 3 full-time caregivers per day.   Yes, right now it is 14 hours, but next week it could be 20 hours per day with you getting very little sleep.

It is time for you to get back to your career of being a photographer before you are overwhelmed and burned out, as it can take almost a year before you feel like going back to work.

I realize you want to do what is best for your Grandmother and I commend that, but in reality Grandmother needs a higher level of care, otherwise she wouldn't been placed in a nursing home to begin with.   You need to seriously think about this.   Medicaid will pay for her care.

Plus caregiving can ruin your health as many on this forum can attest.   One gets so busy dealing with an elder's doctor appointments that you will keep putting off appointments for yourself.   I know I am behind almost 3 years on seeing various specialists for myself :P   And don't get me started on the stress.
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Yes, J. But often caregivers don't realize this is declarable, possible taxable, income or are unprepared for the employment tax filings if not done through an agency. Just keeping thought in poster's mind that this is not free assistance but rather has reporting obligations. Also Medicaid waiver programs can change at any time and lose state funding.
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If you are paid by one of these programs, Guestshopadmin, you are treated as an employee, with taxes withheld and a W2 form.

And VBaker, it is not true that she cannot pay for her room and board if she is on Medicaid. Not even the government expects people to live with no expenses. While she was in a nursing home, almost all of her income went towards that cost. Now she can use that money to pay her room and board.

My mother was on Medicaid while she lived with my sister. Sis charged her the same amount she was paying for her subsidized housing, with no additional charge for food. And the Edlerly Waiver program paid my sister for caregiving. (Not a lot, but Sis said it made her feel "official.")

These are things you can talk to the case worker about.
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Remember that money you are paid will have to be declared as income and you will owe taxes on it.
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Vbaker- that's great that you have actually found services that may pay for you to care for your GM! Best of luck with that :-D AND, sincerely, there is definitely nothing wrong with seeking payment for the services you are providing! She is very fortunate that you are willing to take this task on. If you eventually find a great facility for her, that is wonderful but taking care of her, yourself is an amazing gift. Good luck!
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For the level of care your GM needs, she really should be in a skilled nursing facility. As cmagnum suggests, find a better one! The first experience will make you smarter shoppers this time around.

Many states do have an Elderly Waiver program that provides some in-home care for people who don't need a nursing home. Those programs really won't work very well for individuals living alone (in my opinion) but they often make it possible for family to keep their loved one home. Medicaid will pay someone from an approved agency to provide various kinds of care. In many (most?) states they will pay a family member. They have the family member take training and go through the preferred agency. In most locations they do not cover anything near 24 hour coverage, because if someone needs that much coverage and family can't fill in the gaps, then a nursing home is a more cost-effective option.

Since GM is already on Medicaid, ask her case worker for a needs assessment and to discuss what kind of in-home services would be available for GM.

You are right. They were paying a lot of money for the nursing home. They should be happy to pay less to help the elder stay out of the nursing home. In most states they are.

Do look into this option. But I think in the long run the best thing for GM (and everyone else) is placement in a GOOD nursing home.
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None of her children are willing to care for her full time nor do they even call or visit very often. She had 6 children (one of which was my mother) but 2 have passed. My mother and her sister. That leaves her 4 boys. But, I have since found out that there are ways to be paid through the state and I will pursue them. They are called: Cash & Counseling Program, Consumer directed programs, and Adult Foster Care Program. All of which will pay a family member in the state of Ohio for a full time care giver that is a family member. I am contacting the case manager right now to see what I will need to do. Once I get all of my information, I will pass this on for others on this site. While I am doing this out of love for my grandmother, it has placed a very large burden on me financially. I do not see anything wrong with seeking out payment if it is available.
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No. For some reason this is the most repeated question on this site. I don't know where people get this idea from.

Find another nursing home which provides better care and accepts medicaid.

Where are your grandmother's children in all of this? Why are they not doing anything?
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