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My MIL was told their dementia is not a skilled need to provide home care. They do not cover custodial or supervised care. What are the best things to say to show she needs care? My MIL is a wander risk that is it, I have been told I have to wait until she gets worse but I am getting stressed out.

AL is not covered to my knowledge, and I will not allow my husband to use our money to pay for in home care. She is right over the income requirements for Medicaid, though pretty much all her income goes into living expenses. I was told by the social worker at her doctors office that she would not even qualify for anything through Medicaid either. On paper she scores too high, this is why we were told we have to wait. Essentially we have been told this is not a community problem yet, but a familial one. Their suggestions are telling us to get her family involved. If that was possible we would not be in this situation. We do not want something bad too happen to her but I also refuse let our family pay to cover her costs. She has nothing to sell, lives in an apartment.

I am taking care of this because I know my husband will just opt to pay for everything since that is the easy solution.

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The truth. If you try to stretch the truth or change it, it could back-fire on you and whatever services you/r MIL may get may need to be returned / reimbursed 'back' to the paying entity.
Talk to an elder care / pension specialist attorney.
Custodial care is covered if financially qualified, depending on State and more specific circumstances. I don't want to make a blanket statement as I do not know. (However, my friend is getting it, and the custodial part depends on what he can do from week to week).

You are making two conflicting statements - clarify with your family and husband:

(1) If you husband will 'just opt to pay,' what is holding you back from allowing this to happen? I understand you do not want to carry this financial burden if you can avoid it.
(2) "... I also refuse (to) let our family pay to cover her costs." (Are you the sole person to determine what your family will or will not pay?)
(3) Who is the POA ? Is there one? This person needs to know exactly what is going on / alternatives / options. This person is financially responsible for making accurate, legal, truthful decisions.

In my experience, the representatives at Medi-Cal , Medi-Care, Medi-Caid know what they are talking about and provide accurate information. Whatever they say, get it in writing.

Keep accurate records.
1) Track conversations
2) Always ask for a confirmation # references of your call;
3) Always first ask "could I get your name" and write down "spoke to ... "
4) Date and time your notes and keep as a journal / diary.
5) If you do not feel the information from state / fed agencies are providing you accurate information, ask to speak to a supervisor.

Gena / Touch Matters
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Medicare is the national health insurance for people over 65 and/or disabled. It does not pay for custodial care.
Medicaid is the provider for custodial care for qualified people but it is administered differently in each state - in some states it will not cover ALs, in some states it will cover limited home care - but in all states.... income is one of the considered admitting qualifiers regardless of how that income is spent; it is the only way to creative a level admission field. Home care will rarely give you 24/7 care so as a family you will still have to figure out how to safely guard her against wandering when the home aide is not on site. Not sure where you are located but check with your local office on aging to see if they have a Wanders Program registration.

As a family member I would seek an assessment of her by a geriatric psychiatrist to assess her mental capacity by a medical professional. If the professional states that she is a community risk for wandering, you will need to move her to a secured MC facility. You will need to find one that will accept Medicaid - not all do and those that do often may legally require a period of "private pay" prior to moving the resident onto a Medicard bed - and all of her income (with the exception of a small stipend from her social security, if she receives it) will need to go to the facility. If you want any "extra" care or services, you will have to pay for them.
Good Luck!
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TouchMatters Feb 2022
Thank you. Clear, informative, useful information / response. Gena
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What is "allotted care"? Is this a Medicare Advantage thing?
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Are you her POA? If not, you will not be given any information by anyone. Has she assigned POA's?

Does she have all of her important documents completed and in place? Social Security designated payee?

This is the time to get the business end of things tied up. You should see an elder law attorney for this. It is possible to get this documentation in place in early dementia. She has to understand the purpose of the documents "in the moment". Some attorneys may not agree to do it at this point. It is largely a professional opinion and decision that some will and some will not allow this.
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TouchMatters Feb 2022
And, she needs to realize that if the state (or whichever assigning entity) assigns a POA, she / the family likely will have NO RIGHTS to know anything about the care and situation with her MIL. They will be legally shut out like a stranger and not privy to any information. This is why I became my friend's POA. I have heard of horrifyingly sad situations where a 'friend' did everything (not legally managed) and at some point when his friend got 'worse' and needed a guardian to manage all care and finances, the friend had no idea what happened to the woman he had been caring for - so diligently and with kindness. It was heartbreaking to read. We all need to cross our T's and dot our i's LEGALLY to care for our loved ones. These could also be HIPPA or other laws in place; not necessarily set up to hurt a 'friend helping' however 99.9% ends up that way.

Gena / Touch Matters
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I would not take what a SW in a doctor's office says. Medicaid is complicated. Lawyers take courses in it to be able to say they are Elder lawyers.

You need to take your MIL to a Neurologist. He will do a basic test and have labs run. He may do an EEG and an MRI. IMO if he feels MIL is 24/7 care then she qualifies for LTC. You then talk to Medicaid. They will ask for the doctor to sign paperwork. You will supply financial info. And prove she has no assets other than her monthly SS and pension if she has one.

In my State a Qualified income trust is called a Miller trust. The money that takes her over the income cap allowed goes into this trust. When she dies, the trust reverts back to Medicaid. This you need an elder lawyer to set up. If u go that way, might as well have the lawyer help u with the Medicaid application. The money used for this can come out of Mom's assets if she has any. Medicaid allows this.
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Mmoore90 Feb 2022
Her doctor does not feel she needs 24/7 SNF care yet, what she needs is supervisory care, not ‘active care’. My husband and I recently spoke with a lawyer and she does fit the requirements for a pooled trust, They advised us to do it ourselves to save money-they charge 5k, My MIL mother lives SS to SS she has no assists. The lawyer did tell me roughly the same thing, she could pass what they call the MAXIMUS assessment for LTC, but in his experience and opinion, no MLTC will cover home care and Medicaid NH beds are in limited supply and they prioritize those with greater need. My mother in law can still function in the community.

We bought her a Apple Watch to track her for now. We just submitted the Medicaid application waiting for her application number. HRA has been helpful, even spoke with a nurse that does the evaluation, she told me how it does in our state. My mother in law and her rep are asked a series of questions and the information is out in a computer that generates a score based off that score is how they determine if she qualifies for LTC. What the doctor feels is irrelevant, all that matters is the score. Then at that point if she does qualify she will be scheduled an appointment with her MLTC and they will asses for how many hours or what type of care they will pay for.

The nurse and lawyer did inform me that our area is big of family support so as long as family is in the picture IE my husband and myself she will not get much care unless she advances. Problem is my husband will never leave his mother high in dry so she can have a crisis moment
to get the help she needs. I doubt I could even ask that if him either.

Will keep everyone updated.
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Mmoore, check for your state and see if she can do a Qualified income trust.

These are used when monthly income is over the Medicaid limit.

I would get her a tracking pendant or bracelet. It sounds like all you really need to do is be able to keep track of her at this point. Looking for something that does that would be a start.

Best of luck. The beginning is usually the most challenging to negotiate.
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TouchMatters Feb 2022
If this person isn't POA, and an agency takes over care, she will NOT have any rights to know anything - so a tracking pendant won't matter. I am thinking over the long term. I am not clear about reasoning for a tracking device. I believe this is a legal matter, or potentially will be, and perhaps soon. Gena
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