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Hello. My father was admitted into the hospital on July 16th due to malnutrition and dehydration. He lost 40 lbs during COVID and a neighbor stopped by and found him in his home (he lives independently). He had oral cancer ~12 years ago and as a result has serious issues with swallowing. The doctors believed his swallow relapsed and suggested he go to therapy to receive PT, ST and OT. He also has a feeding tube to receive all of his nutrition because he was aspirating when eating/drinking.


He was transferred to the SNF on July 25 for treatment and on August 19th I was told his Medicare coverage would stop because he progressed in PT. They said his care was custodial. I appealed this because I believe he still needs ST and he is on a feeding tube receiving 100% of his nutrition. My appeals were denied and my husband and I are now paying for him to stay privately. But I am continuing to appeal since I think he’s entitled to the full 100 days of SNF care.


Here’s where things get complicated. My father is extremely confused (he believes he’s eating orally and he’s not so when the therapist comes in to work with him he doesn’t understand what’s going on). The psychiatrist believes this confusion is due to the encephalopathy diagnosis he received but as I am appealing to Medicare to cover these days that he is staying I want to set myself up for success.


He is receiving 100% of his nutrition via g tube and he is not of sound mind/fit to care for himself at home. He doesn’t recall the instructions to handle his tube safely and when he’s not being fed, he doesn’t even realize he has a feeding tube. He’s not of sound mind and I think he’s entitled to Medicare coverage for the full 100 days.


Do I have a case? How can I successfully appeal this? I am not taking my request directly to Medicare and providing all the documentation because I believe the facility only provided PT notes and not information on his mental status, feeding tube or ST.

KP, I get it, you want MediCARE to pay 100 days. But right now your dad is almost 50% into 100 days at the NH. If the hearing is set out to like in November or December or even pushed out later due to Covid issues, can you continue to pay the private pay cost for him till whenever? As others have said, his care is complex & needs to be done in a facility; if where he is can do his care & accepts Medicaid you should candidly speak with admissions as to his staying there.
If the appeal is denied, what then? Does it place you & hubs into crisis mode?

We all have only so much time, money and sense of humor to deal with the maze of stuff for our parents. That you & your hubs have the $ to front your dads SNF bill is awesome. Most of us do not have this flexibility to deal with our parents care or assets. But please, please if realistically you cannot continue this indefinitely, I think you end to look into filing for LTC Medicaid for him.
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That you are not a signatory on any of your dads banking and do not have DPOA, this means your going to have to deal with finding & paying a retainer to an attorney for guardianship (to get access to his funds & make health care decisions). Getting guardianship is where I’d suggest you shift your energy, time & wallet to.

The atty can seek an emergency ward of the state hearing so that either they or you are named guardian at the hearing. So you can use dads $ to pay his SNF bill, pay whatever debts he has that must get paid; put into motion selling his home (which right now is costing $ as it has taxes, utilities, etc). If theres guardianship, you can be compensated for what you do and this $ can be done to offset whatever costs paid for his NH stay.

You - ime -need an atty who understands LTC Medicaid (unless imo his home sells for like way over 500K). His future house sale can underwrite his stay but eventually he’ll run out of $ & apply to Medicaid. Medicaid does not allow “gifting” at all. Should you reimburse yourself now for the private pay, Medicaid will look at this as gifting in the 5 yr lookback. & he will get penalized and ineligible for LTC Medicaid. Medicaid tends to take the position that what we do or pay for on our folks is done for free, out of a sense of familial responsibility and without reimbursement.

His having a home adds loads of pressure onto the situation. Those property taxes, insurance, electric bill, maintenance have to get paid. There's going to be costs to have that sucker made market ready. Your just couple of months into all this. Just how much of a wallet and sense of humor will you (or your hubs) have when property taxes due in January? You need guardianship up & going so that it’s his $ paying for his home & the SNF.

Please try to focus on & start a plan now on “if” Medicare should deny your appeal. You know your going to need guardianship, so my suggestion is you start finding an atty this week. They will want a retainer, maybe 5-10k upfront to start representation. Let the MediCARE appeal run its course but meanwhile your into Plan B.
Good luck & let us know what happens. We do all learn from each other.
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kphuggs Sep 8, 2020
Let me clarify since this board seems to think I am putting all of my eggs into an appeal basket. I am fully aware of everything you mentioned above and this appeal is not the sole item I am working on.

I have an attorney and am working on what you have mentioned. Right now there’s no firm diagnosis of his condition so my priority is understanding what exactly we are facing given the sudden onset of the situation. While this is happening I am parallel pathing looking into Medicaid, guardianship etc. I have an attorney.

I didn’t ask for help on those items because I know what needs to be done and had specific questions regarding appeals. The other stuff is being dealt with by professionals.

I’ll keep updating here in case anybody is interested how this saga turns out.
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KP - I’m going to guess that are you are perhaps looking to Jimmo V. Sibelius settlement? & it’s change to Medicare’s “no more improvement(s) standard” as the rationale for getting your dad 100 paid Medicare days in the SNF?
It’s the Glenda Jimmo case, she has MS & Medicare refused to continue to cover PT, OT she had gotten to maintain function for eons from in-home care cause MediCARE took the position she was no longer progressing / not improving. Jimmo was not quite a decade ago.

If it’s Jimmo that your appeal is based on,imho, you need to talk with someone knowledgeable about disability rights advocacy, what Medicare provided for care specific for your dads long term diseases and how to do the appeal filing.

Jimmo is a significant for how Medicare is paying for services over t..i...m...e for some diseases. It’s seems to be more useful those living at home who have MS, Parkinson’s & the smaller group - like ALS- that get MediCARE before age 65 & that are getting inhome health from an agency that Medicare is paying. My cousin had secondary polio issues and got info on how Jimmo meant there would be no “improvement standard” needed for his in-home care services.

The Jimmo decree can make Medicare cover services for those with Alz or other dementias in a NH. But realize what Medicare will likely be paying for is the specific service NOT the room&board costs. Like for my mom, MediCARE paid for “gait training” by a PT like 3 x a week in the NH. She wasn’t going to Improve & start walking all spry & sassy in kitten heels; it was more about maintaining muscle & not having her end up just sitting in a wheelchair. But Medicare wasn’t going to pay my moms R&B at the NH as that part was custodial care.
Medicare will not pay the custodial costs to be a LTC resident in a SNF. Medicare pays if you are a patient needing skilled care whether patient in a hospital or patient in rehab. Have whomever is helping you do the appeal, review his chart in detail to see how his care plan has or hadn’t changed to see what care levels were done.

For my mom, I had to deal with a MedicAID appeal. The issue was abt medications & heart disease being left out. A medically “at need” appeal was filed. The staff at the NH, especially the DON (director of nursing, who imo is the goddess & power center of a NH), took care of all the medical documentation even though I as my-moms DPOA technically had to sign off the appeal to the state. Now this was MedicAID not MediCARE, but my point is you are going to need the NH staff to work with you on the whatever’s to support that skilled nursing care was needed & provided in the appeal.
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kphuggs Sep 7, 2020
This was extremely helpful. Thank you. I reached out to the Medicare Advocacy Group who provided me with a bunch of litigation similar to my case in which the beneficiary won. There’s a regulation that classifies enteral feeding as skilled nursing if there’s a minimum level of nutrition being provided via tube. He is above that minimum. They explained to me that insurance companies often try to deny coverage despite the party being eligible. They said I have a case so I’ll continue to appeal and see where it goes.
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It sounds like the position Medicare is taking is that he is no longer in need of “rehabilitation,” which is the only type of SNF Medicare pays for that I know of, because he has reached “maximum medical recovery.” Based upon the information you provided, it does not sound like he is likely to benefit from therapy and he is indeed custodial. If so, your only choice is to spend down his resources for his SNF care until he becomes eligible for Medicaid. It’s too late to shelter his resources. If he has substantial assets, hire an elder affairs attorney to get you through the minefield of Medicaid regulations. If he has long term care insurance, you have more options but it doesn’t seem very likely that you will win your Medicare appeal and I’m not sure I’d aggravate myself trying to do so.
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I understand that you want Medicare to pay for your dad to receive skilled care for 100 days. That will turn out however it turns out. They have requirements that must be met for coverage and that there is the rules.

But the big situation you have is that your dad obviously can not live alone. His ending up in the hospital tells you that, malnutrition does not happen in a couple of days, he wasn't eating properly for a long time to end up in the physical condition he was in. You really need to figure out what the rest of his life is going to look like.

Is he going to move in with you? Is he going to have an in home caregiver? Is long term care in a facility the best choice?

Because he will be dead if he goes home to start the same cycle over again, he can not take proper care of himself and that is a fact proven by his physical state upon hospitalization. That isn't even taking into consideration that he now has a feeding tube that he can not deal with.

You say he refuses to discuss end of life planning, what are you going to do if Medicare does not reimburse you in full or even partially? Did your dad promise to repay you? Because you have put yourself out on a limb and you can not force him to repay you if you didn't get his agreement to do so before you paid his bill. Medicare doesn't pay 100% of the bill after day 21. His supplemental may or may not pay the balance in full or partially, has anyone explained that to you? Do you know what secondary coverage he has, if any?

You have to look at how to proceed from here as you battle with Medicare. He can not just stay where he is without a plan. You said you can't continue to pay indefinitely and you have no access to his money. Sounds like you have hung your hat on beating Medicare, but that is the least of your worries in my opinion. What happens at day 101?
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kphuggs Sep 5, 2020
Hi! Thank you for responding. I have a plan in place for his care situation. I did not disclose that because my question was specific to Medicare, but I am fully aware my father can’t live alone and my husband and I have several options we are exploring.
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I would make plans to have him placed in SNF. The rules of Medicare coverage for rehab are quite clear and Medicare does not pay for long term care. He is fast approaching Day 100 - what happens after this?

Since he has no POA I would begin working on this. In the long term you will need this. If he is confused you’ll have to apply for guardianship which may take time.

He has reached Medicare rehab goals. Tube feedings are taught to be done at home. ST can be done at an outpatient center. He isn’t able to complete the exercises ST gives him to assist in improving his swallowing. Therefore there is nothing more they can do for him short of sending him to a SNF or home.

From your post you stated he was found unresponsive at home prior to this episode. This is concerning to me. It sounds like he is unable to live alone anymore.

It’s time for long term care placement. It’s too bad he never arranged POA because you have quite a workload ahead.
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Isthisrealyreal Sep 5, 2020
Sounds like he was unable to live alone pre hospitalization and that is why he ended up so very ill.
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Medicare is basically a Healthcare policy. The 100 days that Medicare will pay is not guaranteed and that is for rehab only not skilled nursing. Medicare has determined that Dad can now go home. He has hit a plateau. What ur Dad needs now is 24/7 care either at home doing it yourself or hiring someone or placing him in LTC/Skilled nursing which Medicare does not pay for but Medicaid may depending on Dads income. Since ur husband is paying Dads bills now, I am assuming Dad has no money.

You have a big decision here bring him home or apply to Medicaid for LTC in a NH.
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kphuggs Sep 4, 2020
My dad has savings and a home. I am most likely going to have to apply for guardianship to access these funds because he didn’t establish a will and didn’t want to have POA discussions. And since he’s all confused it makes applying now tricky.
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I am going to be going through this soon with my dad. He ended up in skilled nursing because of severe leg ulcers caused by cellulitis (too much time in his room at AL and luckily, home health was allowed in and said he needed to be moved in May). He fell while in skilled nursing and spent a week in the hospital then back to skilled nursing, all the while they were doing PT and OT on him. When he started refusing PT in July, we went to self-pay and since he couldn't go back to the AL, we had found a memory care facility to move him to, paid the fees, moved his stuff, and 2 days before he was to leave skilled nursing, his leg ulcers returned and memory care would not take him and he went back on a wound care program at skilled nursing where he has been ever since, continuing to fight the leg wound battle. I asked them to bill Medicare for this time which they fought but his medicare advantage plan told me to let Medicare deny and then they can look at it from a medical standpoint to see if there's anything they can do. I figure it's worth a shot. At $11,000 per month, I'll try anything.
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kphuggs Sep 4, 2020
I’m very sorry you are experiencing this in some way too! This whole process is literally the worst. I reached out to the Medicare Advocacy Group who was very helpful and provided me with a lot of litigation that matched my scenario and supports my case. Perhaps you can reach out to them for guidance.

I am appealing directly to Medicare now as well for reimbursement and to see if they’ll reinstate his coverage and I’m making sure all the right evidence is provided because I believe the SNF left a lot of stuff out to make a fully informed decision.
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Also you may want to Google The Oley Foundation as they are all about enteral & IV feeding & nutrition.
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What is going to be the most challenging in appeals process is that you as his DPOA cannot really do anything about changing what is already in his chart or adding items as a post script into his chart at this point in time. Your not a health care provider, you have no access.

The facility can add items but if their position is we’ve done all we can & you dads done all he can; we followed his rehab care plan to the letter and he’s no longer progressing so no more Medicare rehab benefits.

When he entered the facility, there was a series of ICD-10 codes that made up his post hospitalization discharge rehab care plan. Each has a set group of actions that are to be done and then those have standards or measurements that are taken on a daily or every other day basis. & entered in his chart. If he had PT & OT as his codes, those are now “bundled” by MediCARE as to max paid no matter what. If he stopped progressing in his PT ahead of his bundle, within a day or 3 max (weekend) MediCARE knows due to chart input & stops paying. If he met his bundle max, they stop paying. PTs & OTs, in my experience, really do want to utilize the full bundle but if hes done the max or measurements are showing no progress, they are stuck. After 3-4 days of no progress, MediCARE is done paying for whatever services on the ICD codes he came in with. PT & OT seem to be all done within 6 week max. Most elderly don’t get beyond first 20/21 days when MediCARE pays at 100% as they stop progressing before 21 days. Your dad actually went beyond the initial 100% paid days as he got 26 days rehab. Appeals - in my understanding - look at care needed based on hospitalization discharge care plan only.

ST I’m not familiar with. Garden Artist post is really informative on ST.

His encephalopathy, feeding issues and cognitive abilities aren’t what his codes for rehab were about. They are different health care issues. I’m not discounting the seriousness of these. Or making light of his problems & your fears. But they are health issues he had before hospitalization & still has now but even more so. Appeal doesn’t look at those other factors as not why he went to rehab.

If what your hearing is “he’s custodial care”, realize MediCARE never pays custodial aka long term residential care.

You & hubs are paying for stay right now, right?...... are you paying skilled or residential care rates?
Whatever the case, realistically how long can you do this?
Are you needing to be reimbursed the $ you’ve paid for his care? (this actually is important should be end up applying for Medicaid)
Why is dad not using his own $? (he gets some type of income, SS$ or other retirement, if not, what’s happening with his $)
Is none of his $ - income or assets - paying towards his stay at all?
Is there a reason why Medicaid has not been applied for?

Average NH custodial stay is 2.5 years.
Can you afford that totally without jeopardizing your financial future?

I've only personally known 1 person to get 100 MediCARE days. Auto accident, TBI, he was youngish fit super healthy early 70’s. Got into speciality brain care rehab facility where it’s not uncommon to have 6, 12, 18 mos rehab stay. His kids went to elementary school & sports with ours. Medicare paying thier 100% & 80% wasn’t an issue as TBI codes have super long rehab.

Unless your extremely well off, there need to be some discussion on his staying permanently in custodial care and his applying for Medicaid. The way you describe him, he cannot return to his home left on his own. He needs 24/7 oversight on his feeding tube.
Where he is now do they have Medicaid beds? If so, will they work with you to get him transitioned to a Medicaid bed? and help you thru the application? Would his return home work with caregivers hired and you & family pitch in for oversight & care as needed?

I think you need to look at having the appeal denied and look for what realistically can be the best most secure situation for your dad. Good luck.
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AlvaDeer Sep 4, 2020
Bowing again to your knowledge. you give such good advice on this forum.
I know that when my bro was in rehab after a serious accident they wanted to have him leave after 21 days; they said that he had progressed as far in PT as he could given a brain tumor (benign over the medulla and controlling balance) and early Lewy's Dementia. The DOCTOR wanted him to remain in rehab a full month because he wanted a repeat MRI before discharge to make certain this was an old calcified brain tumor and not a new fulminating one. So he just basically "made something up" I was kind of told in hinting. He said he need 10 more days in wound healing (had two serious smashed in forhead and back of head, going through two windows; made sense). But the rules are government rules. This worked. Doesn't always. I think people are unaware how any of this works until they are going down for the third time in the system with an unexpected illness/injury.
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No, they have already told you that you do not have a case. Your husband now can either return home with someone managing his feedings (over time these do not usually go well; there is often severe diarrhea, bed sores and wasting. My own MPOA states I will not accept either dialysis or artificial administration of food; I know where both lead, as a retired RN), OR he can be placed in a facility that will assume this heavy care. That will be quite costly. But it is difficult to imagine this care being done any other way but placement in long term nursing home.
Your Doctors, PT, OT and all others at SNF have decided that there is no benefit for your father in remaining in this care; that is he will not progress. You have appealed and lost (most appeals are lost).
I am so sorry. The choices now look so unhappy. Speak with the Social Worker about exactly what choices you are now faced with. I wish you both good luck. I hope you will speak also with palliative care and hospice people. I am not certain how long your husband in the past expressed to you he would wish to go on with very little quality of life. Whatever his wishes might be it would be up to you now to do what you can to honor them. But with extreme debilitation there is often little choice in the matter. Not everything can be fixed, unhappily.
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I think the pivotal issue is the Dx of needing "custodial care".    As I read that, he needs assistance more with ADLs than with PT.   But given your description, I think he probably does need ADL assistance, as well as PT, ST and OT to the extent of adaptation to his current situation.    He can benefit from that kind of therapy at home.

However, given your description of the challenges of cognition, it does seem as if some level of custodial care is appropriate, now and perhaps more in the future, if only for his safety.   And I would agree that SP should continue - definitely!

One suggestion; instead of paying for private care: raise with his physicians the concept of long term care.   Select Specialty Hospitals were ones we used; I don't know if they're still in existence, but one was absolutely top notch.   They offer step down care from a hospital, with a goal toward eventual rehab and return to home (if possible).   

This was for a post multiple Dx complication recovery, including intubation and ventilator dependence.    This is also where the Dx for healing and progress comes into play.    If your father can benefit from some PT, ST and OT, SSH could help, to prepare him to function as best as he can.

If plateauing is an issue, then long term care is probably appropriate.

I've only appealed to Medicare once; I followed all the instructions, took it to the second level, and Medicare just irresponsibly dropped the case and never did anything else.   By that time the hospital had written off the charges, so I didn't have to pay.  But I was NOT impressed with Medicare's somewhat sloppy and casual attitude, as well as its negligence in not pursuing the review.  

Other issues:

I have some serious concern about his having living alone, and being dysphagic.  He could easily choke, aspirate and become cyanotic.  This happened to my father, but fortunately it was in the hospital.   Had he been alone, he probably would not have survived.

Good speech therapists can help with management of dysphagia, of using only acceptable foods, of "chin tucking", and of exercises (including the Shaker exercises).    These could be through home speech therapy, or at a long term care facility such as Select Specialty.

It was the Shaker exercises that allowed my father to improve and eventually be decannulated.   But with your father, the cancer may have left permanent conditions that can't be overcome.   I'm sorry to learn of this; it must be so challenging for all of you.

I also had to fight for my father, against a pulmonologist who said he wouldn't live but if he did he'd never walk again, against speech therapists who said he would never eat again, and against other nay sayers.  

There comes a time when having support 24/7 becomes necessary though.
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kphuggs Sep 4, 2020
Thank you for responding. They are saying right now he is basically receiving custodial care. When he entered he couldn’t even sit up because he was so weak. But he’s now walking and dressing himself under observation so they believe he’s fit to go home with supervision. I think he needs to continue ST and he definitely needs support with the feeding tube. Because he’s receiving all of his nutrition enterally, it classifies and skilled nursing. And because there’s no one available to administer his feedings at home due to 1) legal reasons (HHA in NJ cannot touch feeding tubes I’ve been told. Only an RN can) and 2) at a price more economical than the facility, his should receive his 100 days.

I’m currently building a case to support this, but wanted to see if there’s anything I’m missing.
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