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Periodic Contributor

Caregiver for mother, becoming paid



I have been actively involved in caring for my 89-year-old mother since I coincidently moved back to my hometown in 2011. If we lump in financial management, the care extends back to her early sixties because she could not balance a checking account or fill out paperwork to keep her benefits. My mother has Alzheimer's, and the systems I have set up have made it a manageable disease. We are approaching the eleventh anniversary of extra life she has had over her seven siblings. Good genes, not smoking or drinking, are certainly at play here, but there is more I have supplied, including arranging for the emergency care she needed and would not have received at age 77 if I had not been calling her several times a week and picked up on a health issue. She likely would have died from the incident.


My mother only has about $3000 and no other property. After getting my father's higher Social Security benefits, which I alerted SSA after a two-year stalemate of my mother not calling them, likely a red flag in retrospect for dementia, and they put me on as rep payee. I think because of her poverty, we have relied on agency on aging "experts," who either are not versed in asset and service management available to the middle class, or more likely are keeping it from us, because what little she has, the state wants it, wants all of it!


I want to make it clear that I have not denied my mother going to some sort of Medicaid-covered assisted living. She has made it clear numerous times she did not want to go to "one of those places." My state has a program of allowing Medicaid funds to be used for at-home care. I only object that my talents and TIME have not been compensated, when they would be compensated by a home health care agency. I want this changed today going forward. Looking around on the Internet, I have refined my aspiration for the relationship with my mother to be that of a statutory employee. What was offered before by the AAA was that I become an employee, not sure of whom, the home health agency perhaps, and make sure any payments run through a paid fiscal agent for tax withholding. Firstly, the wage offered was a lowball, particularly in light of what others make and ask for in Internet postings and Labor data in my area, especially with my college degree in a health care field. Secondly, I have always done my own taxes, including for self-employemnt, so I am fairly certain I can accurately comply with making quarterly tax payment and FICA payments on my own.


Well, the first obstacle to this plan is the rep payee situation. Once other parts of my plan are in place, likely a trust, I have no objection to it getting kicked to a non-profit payee, as long this does not become a tug-of-war with my asking for money to pay her bills (comment?) To my knowledge, the worst that would happen (challenge?) by paying myself a fair rate for providing LTC services to her is I am prohibited from being anyone else's payee. After all that has gone on in the last decade, I would refuse to be anyway. I never sought the unpaid position out in the first place! I was only looking out for my mother to get what was rightfully hers, particularly since my father was no joy to live with. At first, the extra money allowed her to go on senior trips until her memory prohibited this. Later, some it has gone to getting HBO. Trips and premium television were never in her budget before getting my father's Social Security because the money did not cover more than the basics.


Secondly, the next prohibition to directing my mother's income to paying for LTC services I provide is the standard power of attorney we both signed just after my mother's serious illness at age 77. This form contains one line prohibiting my paying myself. I understand on a business level, yeah, like  embezzlement prevention, it is not good policy to have one money manager who also cuts a check to herself for services. I can think of no one who could, or would want to be, the second check. (comment?) My one sibling, who lives even closer to our mother, no longer answers the phone or visits. I wonder the comment he has made several times, "I want to remember Ma as she was," is just code for, "I do not want to get sucked in for extra work, " or "I cannot deal with dying people." (comment?) I asked for a rewrite of the FPOA the last time her case manager stopped by, striking that one line, and it has been a month or more, and I have not heard back on that or the other issue or two. I am tired of waiting. Incidentally, I learned that form from the same legal project, exists on the Internet, and I am aware one tenant in my mother's apartment building is a notary. I see this too as being a resolvable issue. (comment?)


Looking for discussion, shared experiences, advice 🙂 Thank you.

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Honored Social Butterfly

I was my mother's LONG time Financial handler, for about 50+ years - Because of her conditions, I had her Durable POA for that long and then when she began to get Social Security, I became her Representative Payee also.


Since then I handle the affairs - financial and arranging for their care - for a few disabled individuals.  None of these folks, including my late mother, are/ were in poverty and therefore do not/did not get any care via Medicaid.  I get no payment for these services but am reimbursed for my mileage and other incidental expenses. 


In the capacity of being a Representative Payee, you are right that you cannot pay yourself for any services unless cleared by Social Security in the regards to being paid the Medicaid HCBS allotment for covered services and your states handles it this way.. The POA document, if it says that you can't be paid, was a stipulation applied to the document because there is a choice in Durable POAs.

NOLO - POA agents FAQ  It all depends on the wording in the document and the choices your monther made when it was drawn.


Medicaid works in different ways depending on the state where your mother resides.  I believe that you are speaking about the HCBS program - - Home & Community Based Services

States must apply for a 1915(c) sect waiver for this program but I believe that most states have some types of program in this regards.  States have different types of programs under this waiver - some states only cover some services, like homemaker services, personal care or a home healthcare aide; none of which are highly paid individuals.  Other states just provide a Medicaid amount and it is up to the beneficiary (or their designate) to find the type care they need and yes, this could be a relative, even one that lives in the same household.  But again this is a relatively small amount of money.


I believe your problem here is that you are expecting more money for your services than what your mother can pay since she seems qualified for Medicaid.  No matter how you set up the finances concerning your pay, your mother only has so much to work with without taking the money from some other place. 


Yes, you do have some dilemmas but I believe this could be worked out if the state where your mother resides has a direct payment to her for care services under some Medicaid HBCS program and you only take this amount as your pay for the services. Then you can pay all your taxes out of it just like a self-employed person does.  I came back to edit this part -

Depending upon your situation (more clients or just mom) and who actually pays you for services (mom or Medicaid), certain taxes may or may not apply.

IRS - Family Caregivers and Self Employment Tax


You probably should clear this with Social Security so as to not jepardize your Representative Payee status and make everything on the up and up so that no problems arise.


By this way, you do not have to have a third party or a Trust.


I hope you have a Durable POA rather than a regular POA because a Durable last and last and a regular may have stipulations in timing or actions in what you can do and when.  Any POA is between two parties, I have never heard of a "rewrite" especially if the principal cannot agree to any changes due to a mental condition.  That would be like you signing in both places - the principal and the agent (attorney-in-fact) - not cool !!!!


It sounds to me like you are going to a lot of trouble (like setting up a Trust) for the amount of money that Medicaid might pay.  It sounds to me like you might be spending your mom's relatively small amount of money (like setting up a Trust) a little foolishly.  Exactly what would be going into the Trust???? 


A word of caution:  An attorney-in-fact has a fiduciary responsibility to act in the principal’s best interest in every situation, and may be liable for intentionally acting outside his permitted duties, or in a manner that is harmful to the principal. 


You have lots of documents saying that you cannot do what you want to do.  This could put your currently relation to her finances in jeopardy.  But like I said talk to Medicaid in the state cause they run their own programs to see how it works and if you can be paid if they issue your mom funds for care and then make sure to get approval from Social Security so that your Representative Payee classification is not put in jeopardy.


IMO - to pay for any services the beneficiary (principal) has to have the money to pay for these services - doesn't sound like your mom has the money to pay you unless Medicaid gives her a small amount to pay for home care.   When and If you can no longer do it - paid or not - she will be taken care of by Medicaid, most likely in an institution, when things get worse, as they usuaully do with Alzheimers.





It's Always Something . . . . Roseanna Roseannadanna
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Periodic Contributor

To clarify, we do have a DPOA. I hear different stories as to whether it is in effect or not based on the Alzheimer's. My mother apparently still has a valid signature because I set the reminder in her call queue to show up for her housing recertification just last week, and she went and signed her paperwork.


She was recently recommended by her caseworker to have her care stepped up to where the paper would have to be signed for Medicaid Estate Recovery. I declined because my understanding of what the program would entail is not what she needs. She does not need to be bathed and fed. She does need more hours of housekeeping, and items prohibited from the program, like pet care. And I need not worry about a Medicaid penalty in setting up a trust because it would be a month, based on some legal CE I have read online, of nursing home care, based on what it would cost Medicaid if she were in a nursing home. 


Where would the money come from? Her Social Security, the same Social Security that is not being spent on care. Her income-based rent and SNAP cases have some flexibilty if her finances were treated as if she were middle class, and there was documented need for certain types of assistance, e.g., errands, to reduce her income all the way down to zero, just like reducing one's income on a tax return by taking valid deductions, particularly medical- and disability-related deductions because they are large and ongoing. I have already research the HUD and SNAP issue. If she has zero income, her rent would be zero, or close to it, freeing up over $200, and her SNAP would be the maximum for a single person, a gain of perhaps another $40-50 per month for her. Since the widow's benefit, just under $1000 per month, meets the legal defiinition of poor, she gets QMB and Medicaid in my state, though they may put her on a spend-down if her assets are too high. A trust would prevent this "too many assets" issue from occurring, and recurring. She is at point where there is nothing left to buy except food. Her funeral is all prepaid, and her plot and stone aleady set. Matter of fact, because I know it bothered her, her mother and maternal grandparents all have stones she paid for. I took care of the details of getting them.


As to "the choices your [mother] made when it was drawn," she didn't make any except that I was the child who had demonstrated the ability to operate her checking account and see that her bills are paid on time. There may have been some emailing and/or phone calls with her AAA caseworker, but it was already signed and all I had to add was my signature. In retrospect, I should have had someone looking out for any legal angles for me before I signed. I never dreamed twelve and half years ago that 1) my mother would still be in her apartment, and 2) the services provided would be so short on quality and quantity that I would be down there nearly everyday to check to make sure she and her 17-year-old cat are both okay. I timed what I did tonight and spent 1 hour 25 minutes on cleaning and a short errand I know will not be done by the aide on Monday, including setting up cat food and her pillbox.


I think there is some confusion about income streams for paying for helpers. I have the authority to hire anyone I want and pay via my mother's checking account for any agreed-upon quantity of money. I remember one person, who was highly experienced, told me her rate was $20/hr plus mileage. I just have not used that authority to hire anyone because I fear inviting more strangers into her house to steal, and making more work, like failing to remove Kleenexes from the bedding before washing it, to wasting supplies in revenge when I have complained to the agency, to having to spend $50 for a box with an expiring lock so the agency cannot claim, since the laundry quarters are missing, it could anybody who walked off with them. The other stream is Medicaid, where an agency sends an employee to provide services they are allowed to provide per rules. The person who does this now is competent. Even the cat, who is very choosy, loves this aide. We just lose the hours for the frequent Monday holidays because I have made it clear I do not want a sub. The last sub claimed work she did not do, as evidenced by a picture on my cell of the laundry pile the night before, and she stole. Worse yet, she appeared, or had someone appear on her behalf, to replace the quarters stolen the day before, except the quantity replaced was wrong, showing she steals house to house thoughout the day anything she can get her hands on.


I do vaguely remember about a plan by the AAA where I would be paid but I needed someone to check my work.  As my brother is AWOL, and the couple of people I approached in my mother's building to sign off wanted no part of this, for fear of some legal risk to them, my great concern about my SSN being exposed on the form to anyone who checked my work and signed off on the form, this option was quickly a no-go, so quick I do not remember which money pot it was to come out of at this point.


Well, I am leaning more toward seeing a lawyer to set up the trust and discharge the payee issue. Perhaps there are some options for my mother getting good care without so much involvement on my part. Getting paid was not so much to fill some economic hole for me, because there is no hole,  but an acknowledgment there is value for all I have done over the years to keep her and the cat well, and time spent there could be spent elsewhere, and with economic gain at my discretion.

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