Asked to leave assisted living. What are my rights here?

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Asked to leave assisted living. What are my rights here?

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My mom is in late stage Parkinson's, has been at her current ALF (state of GA) for 2 years and because of recent falls they are asking her to leave. She is also on Hospice care at the ALF. They say she can't stay because of state regulations and requirements that the ALF has to abide by. My concern is that given her fragile state and general anxiety this move may be the end of her. She has moved 2 times before (once in same facility from independent to assisted and once to this new facility) and each time takes her down a notch. She is comfortable where she is and loves her aides. The nursing homes I have visited say they can't keep her from falling either and basically can't give her any more care than what she has now so I don't see how this is beneficial for my mom. We cannot afford a smaller personal care home or private sitters. What are my rights or options here? Thank you.

Assisted Living Elder Law Falls Parkinson's Disease

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You may add a 24-hour caregiver which may satisfy the ALF.

It is true, state regulations prohibit ALFs from keeping residents beyond board and care. This is a state regulation (supported by national regulations) which is protective against intentional or unintentional neglect. ALFs do not have the level of skilled professionals nor the staff ratios to care for those who truly meet skilled nursing care acuity levels. This is why it is called a continuum of care.

To avoid transfer trauma, involve your mom in the decision as much as possible.

Good luck.
Donna

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Assisted Living facilities cannot provide the same level of care that a Skilled Nursing Facility can. However, they’re correct when they say they cannot prevent falls. There can be a room full of aides, nurses and therapists and somehow, some way, a Senior will still find a way to fall. My mom did. But, she would take off without her walker, too Does your mom do this? Can you explain to her that she shouldn’t?

I would start searching now for Skilled Nursing for her. To battle her current facility would most likely prove fruitless. It will be time-consuming and probably won’t have a good result for you. If she’s anxious, maybe speak with her doctor about a low-dose anti-anxiety Med for her. This is a lousy situation for all of you.

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It's so hard. I also had to move my Dad from his beloved AL when his falls were too frequent. But instead of a NH, I found him a residential board and care facility that could provide much closer supervision. They allowed chair and bed alarms which the AL would not allow. He is doing much better there, and the cost was very similar to what he was paying at the AL with all the services, at the B&C everything is just included in the price. So shop around, and because the B&C is privately owned and not a big chain like the AL, I was able to negotiate the price. The downside is that the B&C, the residents don't have the mental capacity to interact as my dads needs some socialization, so I take him back to the AL to visit his old friends frequently. Good luck!

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What does B&C stand for? I'm guessing it's a smaller private care home of some kind, more like a nursing home than an AL?

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I honestly don’t think you have any rights if it is an assisted living home because those are for people that just need some assistance in getting by like giving them meds, etc. Unfortunately it does sound like your mother belongs in a nursing home. If she is on hospice that means she doesn’t have long to live. My brother was on hospice for a very short time but he stayed at home because his wife was there 24/7 and he had nurses or nurses aids in every day for the short time he lived. He was diagnosed on a Monday and died the next Wednesday. He was 66.
You don’t mention how old she is and this will sound cruel but maybe it is better she goes. My aunt and uncle both had late stage Parkinson’s and lived at the same nursing home. They were like babies physically. They couldn’t do anything but lay there. They couldn’t speak or feed themselves. I think it was worse them being in that shape. Your mother must not be as bad as them because there was no way they could have gotten out of bed or even sit up on their own. It is a sad time of life but hopefully she had a good life. Just spend as much time with her as you can.

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My mom had Parkinson's disease, too. She ended up with aspirated pneumonia in her final days. She had lived for nearly 2 years in Assisted Living, but when her falls (with a walker) began to occur, we moved her to nursing care where they could use alarms on her bed or chair. She did eventually use a wheel chair in the last month or so of her life. She could walk some, but felt more secure in the chair and her nurses were so sweet to help her go from her room to the dining area or to visit my dad who was 2 doors down.

Personally, I believe the pneumonia was a “blessing” as mom did not have to go through the final stages of the Parkinson’s. My mom was ready to go to heaven and had always told me that when it was her time to go, please don’t prolong it by using feeding tubes or life support (I was her POA and I honored her wishes). We hired hospice as soon as she was diagnosed with pneumonia and they made her as comfortable as possible. My dad, most of my siblings and some of their spouses, my children who lived close by, my husband, and I all visited her in her final days. The nurses planned to call me when they thought her last moments were nearing, but she went quickly during the night and I believe she didn’t want us to be present at that moment. She’s home now and she’s no longer suffering from the effects of Parkinson’s disease!

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I'm in NJ but an certified as an assisted living administrator. Here we have definite rules about the services we can provide to our residents. We can not provide NH level of care. My issue is that I don't think this is brought to the attention of resident and families during the initial tours and admission process. The famous (or perhaps I should say infamous) line of " see, your mother can age here" should have an addendum that says as long as she doesn't require a lot of help with ADL's, isn't bedridden for more than 14 days, blah, blah, blah. Some families might then opt (and be able to afford) for a CCRC (Continuum Care Retirement Community) which has all levels of care from complete independence to skilled nursing and rehabilitation on the same campus. A resident might have to change buildings but they could see their friends for lunch and dinner. Of course, CCRCs generally require an up front entry fee (often in excess of 150K) and have a more expensive monthly charge for this reason. They also tend to have slightly more staff (for faster daytime service at least) and most have chefs or chefs in training - ergo--- the is as good as an AL.
The nursing homes are quite correct in stating that they can not totally prevent falls. We used to be able to use walkers (almost like the ones you can buy for kids just learning to walk) for our dementia patients who were going to move regardless of what you put on them. Watched a resident manage to tip it right over. She was giggling as we all dashed to set her right side up. Has your MD or the PT come up with the cause of the latest spate of falls? Is it just the progression of the Parkinson's? Is she able to successfully use a walker or a rollator? Not sure if that would help- just a thought. Maybe a classy wheelchair - preferably with a classy seatbelt (they always try to get up and out of those while forgetting to set the brakes).
Best of luck to you in this difficult situation.

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Perhaps you can answer a question I have had for a long time... My mother used to check out the ALs local to where she lived (I think it was 25% free meal, 25% nosy and perhaps as much as 50% part of her plan, of course the 50% vanished when she developed dementia!) Many, if not all, were apparently these CCRCs.

When we decided she needed to move to a safe place, it was not to the ones she checked out because they were not close to where I could keep tabs and visit easily. Anyway, one of those in this area also is a CCRC (has that "up-front" cost.) Seeing as one still has to pay monthly (and sometimes a hefty fee at that!), what is that "up-front" money used for? From what I was able to determine, it isn't used to offset the monthly fee, so why the big $? Where does it go?

(NOTE: one of the places we checked said they were her "home for life", meaning she would stay to the end, but they were not a CCRC that I know of and did not have that up-front fee. Their assessment fee and monthly fee was higher than the place we (me) chose and it was for a double room/shared bath, so it likely was even more for a private room (mom would NOT like sharing!) The place chosen is also a very short drive for me (the one who manages everything and sees her the most!) The other would have been 40-60 minutes each way! Her current place is also, despite yearly increases, STILL less than that other place after 3 years! They do accommodate some issues in the MC unit (some need bathing, help getting up/down/wheeled/dressed/fed, etc.) and up to 1 hour of "personal" care is covered - thankfully mom, so far, hasn't exceeded that one hour! If/when she does, another hourly fee is added on (would suck if she exceeded her included hour by 5 minutes!!!!)

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Talk Turkey to th Social Worker at Her facility, To Come up with some Solutions...Mom has Rights and They have to Abide by a Way, No Matter, To Make Sure She is NOT Endangered HERE in any Way.....

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But the state also has laws, and it is reasonable to expect them to be obeyed by the ALF.

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She may require the level of care that a SNF (Skilled Nursing Facility) would offer, I am surprised that they are refusing her.
Talk to both the social worker where she currently is as well as the Social Worker from Hospice they both should be able to help you find a place for your mom.

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I don't think the SNF refused, just said they also could not prevent all falls. I would think falls are going to happen no matter where someone lives (AL/MC/NH or your/their home), until they are unable to get out of bed (or even roll out.)

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There is a major difference between Assisted Living and Skilled Nursing. Staffing is one difference. It’s unfair for those in AL to have one resident who requires more care. This takes away from time spent caring for other AL residents. Yes, a person could fall anywhere but there is more staffing and oversight in a SNF. When a higher level of care is required, a move to a SNF is necessary, otherwise AL’s would have too many residents needing more care than can be provided for them. This would defeat the purpose of “assisted” living.

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Call the Social Worker at the Hospice and get their help with this situation. The ALF is correct, the regulations in GA leave them very little room to legally keep your mother. A SNF is most likely, legally, where your mom will have to be, as you cannot afford private sitters. The SNF is being honest about what they can and cannot do regarding falls - but until the regulations change the ALF's hands are tied. Are you certain a smaller PCH is out of the question cost wise? Usually they are willing to be a bit more flexible in their interpretation of the guidelines. Also depending on the situation and how near the end your mom is sometimes you can "slow down" the discharge until it is a moot point. I.e. the ALF will work with you to legally meet the requirements of giving you a discharge notice, letting you appeal, giving it to you again, so that at very end-stages your mom doesn't have to move (like expectation of less than 14 days). If family is willing to stay in the room with mom to keep her safe during that time. Trust me, the aides and ALF do not want to have your Mom leave, I am sure they love her too, but legally they can only do so much before they will get in trouble with the State of GA.

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I wonder if NHs are obligated to suggest (not recommend) SNFs to those who need them. It sounds unethical to just toss ppl out because their needs exceed what NHs can provide without any guidance.

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I am a Director of Nursing in a AL community, we do not chose where people go for long term care or SNF. It sounds a bit cold I will admit, but you have to look at the AL community as an apartment complex with medical help on hand. At my community I have several NH residents but we believe in the right to age in place...up to a point. If I feel we cannot meet a residents needs properly and safely then we need to find them a new home. In TN AL communities have a page in their contract on admission that is signed by POA/resident which ever signed the paper work and it states we can issue a 30 day notice for several reasons.
Usually what happens the most is a resident has some reason they are sent out to the hospital and are gone for a bit, we then go in person and assess the resident to see if we can still meet their needs. If I feel we cannot do this I speak with the social worker at the hospital and they will find placement and help the family members with the process. I do what I can from my end to help. I have a lady in similar situation, we have added mats on the floor next to the bed, we try to keep her in activities or with a staff member at the main desk or at least keep her in our line of sight.

I know its a lot to deal with but be honest with yourself and decide if you feel she has needs not being met in an AL community and would the care she receives be better where there is more help available.

I wish you the best of luck!
God bless

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Let's agree, just for the sake of the argument, that it is not in your mother's best interests to move. She is already receiving the level of care that minimises her risk, though it can't eliminate it; she has a good relationship with her aides; and the disruption of a move would itself be damaging to someone in her frail state of health.

Try nailing the ALF down on what the incompatibilities are. What are your mother's needs and risks that conflict with their regulatory obligations, exactly? And can anything be done to reconcile them, short of moving her? They must have done a formal risk assessment - ask to have a look at it, tackle it point by point.

It sounds as though they've already proposed one-to-one care as a solution, but not an affordable one. Is there any wiggle room on that? If not, what else could be done that hasn't already been done to address the falls risk? - what happened, what might have prevented it, what would need to be done differently.

It's actually not good PR for the ALF to be kicking out a long-term resident because she's become "too difficult" - it's not going to win them Brownie points with anyone. So if I were you I would pursue negotiation first. At the very least you'll feel you've tried.

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You are correct Countrymouse, but in many cases ALFs are bound by state regulations and would risk their licensure if they broke the laws. Sometimes negotiation is workable, other times not. Ambulatory is often an issue.

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I think you answered your own question when you said that the NH would be providing the same level of care as the AL is currently providing. Which means that the AL has tried for your mom, because they are providing her the same level of care as a NH. That speaks volumes for how much they think of your mom. They just can't sustain the level any longer.

Does mom need more care or would she be fine with the same amount she is currently getting? What is her prognosis? Hospice doesn't mean imminent death anymore, so what besides Parkinson's is she battling? I ask because you want to make sure she doesn't have to move again.

Have you actually gone and talked to board and care homes to understand pricing and services provided? In AZ they are typically a fraction of the cost. They don't offer activities or trips to Walmart typically, but they do accommodate many levels of care.

Hugs, this is a difficult situation made even more difficult by the AL coming to the end of their care abilities.

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I am so sorry you are having to deal with these issues. Many years ago I worked in a nursing home. More recently my mom was in an assisted living facility. She was given the best care possible. Hospice was called in by me to help with her needs. It's the laws made by legislatures that make difficult to care for residents who are falling or likely to fall. There is no good answer. Staff would apologize for having to call me when she fell. Fortunately, I understood why she was falling and why the facility could not stop this from happening (laws). It is all a part of aging. What would others suggest to make things better?

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It sounds like your mother needs more than the assistance that Assisted Living offers. She probably needs more nursing care and medication management. Late stage Parkinson's carries a high risk of dementia and UTI.

Is she falling when she is alone? If you can't afford a sitter, you could try calling every friend, relative and fellow church member you can think of and asking each to come and visit on the days when you can't.

Ask the Hospice service for advice on where to move her.

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Assisted Living Facilities has to issue a 30-day written notice if they are going to discharge a resident. That discharge can be appealed.

I live in Missouri. In Missouri there are two levels of Assisted Living Facilities (ALF), there are ALF I and ALF II. In an ALF I a resident has to be able to make a "pathway to safety" (if there's an emergency such as a fire they must be able to get out if the ALF with minimal assistance within 5 minutes or less). In a ALF II the resident does not have to be able to make the "pathway to safety" and can "age in place" including having hospice services. I don't know if your state has the different levels of ALF's but it is worth checking.

As far as falls goes that can be a deal breaker for many ALF's. You said the skilled home told you that they can't keep her from falling either, true but they are staffed at a higher level than the ALF's so there would be more oversight for your loved one which may mean less falls.

You could contact an Elder Law Attorney for represent you in the appeal process. You may want to contact your local Long-term Care Ombudsman Office, they can file the appeal for you at no cost but you may still want a attorney to represent you at the hearing. The Ombudsman will also know if the discharge notice is legal, in my experience most discharge notices I saw did not meet the legal requirements which I was able to use to by my clients more time to decide what they wanted to do.

I wish you the best, let us know what happens.

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Thank you for the helpful response and thank you for clarifying what the letters ALF mean. Some of us need that at the beginning of the discussion.

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After a bout with pneumonia & a stay in rehab, the ALF mom lived at for 4+ years would not take her back due to advancing dementia & too many falls with broken bones they were unaware of. She fell under the radar........was able to get herself back UP after a few falls and didn't call for help, so nobody knew. After a CT scan in the hospital, it turned out she had 3 broken ribs & several broken bones in her sternum in various stages of healing, all from falls we knew nothing about. Mother is devious. Anyway, the ALF agreed to take her into their Memory Care (MC) Unit across the parking lot, which is $2K a month more but staffed more like a nursing home in that the ratio of caregivers to residents is MUCH better than the ALF. Mom fell again today at MC, but that's ok........they expect it. She has bed and chair alarms so when she tries to transfer alone, the alarm goes off and help comes in right away. Is this type of scenario an option for you? I do know that ALFs are indeed bound by certain rules that we agreed to when we signed up.........the main goal is to keep our folks safe and when they can't do that, the folks need to move on. The other thing I wanted to mention is you can hire an advisor who looks around at different ALFs FOR you, to determine which ones will take higher risk patients. Morningstar here in Colorado is one of the ALFs that takes such patients, such as 2-person transfer residents. The rates, unfortunately, are similar to SNFs; the man I spoke with pays $8500 a month for his dad at the SNF at the gold-level of care.

You are correct in that the folks DO take a step down every time they're moved. But in the end, what choices do you have? If the ALF says they can't keep her, then you have to move her, one way or another. If they DO have a MC unit, however, that may be your best bet.

Best of luck, I know how hard this whole mess really IS!

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I am going though this exact thing right now with my mother. She has fallen at the MC ALF 12 times since Jan. with several fractures some old and some new. She has also become increasingly incontinent. The MC ALF says she is beyond the scope of their care and sent her to the hospital. The hospital sent her to Rehab. I do see she is gaining some strength and moves a little better but does need at least one person with her whenever she stands. The MC ALF requires people to be ambulatory and quite frankly I'm surprised they kept her for as long as they did. She was requiring 2 and sometimes 3 assist when they sent her to the hospital. This was even after she had PT come in for several weeks. ALF have less staff than Nursing Homes, so this is what she needs now. The NH can't keep her from falling anymore than the ALF and she has already fallen 3 times there because she can't remember to call for help and tries to get up on her own. Everyday she asks when is she going home or at least back to that other place. I just change the subject since I know she doesn't understand and won't remember even if she did understand. I really don't like her in the NH because she had a private room in ALF and now has to be in a semi and not just share her room but also the bathroom with 3 other women. Life just isn't fair. I never promised her I wouldn't place her in a NH and I'm glad I don't carry that guilt. I have my own medical issues and just the stress of going to see her makes them worse. So living in our home would have never worked. Tomorrow they are moving her to a new room for NH placement from the Rehab. So I'm sure it'll be another settling in process. I would like to get her placed in a facility closer to me but I just don't want to put her through the adjustment again.

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Have you checked into the cost of care homes? My mom was kicked out of memory care, she needed more care than they could provide. She was on hospice at the time and they recommended a care home that they worked with regularly. None of us want to have to deal with moving a loved one as it many times causes further decline.

The move from memory care to care home was a good one, overall, for mom. The caregiver/resident ratio was lower and yes, a better fit for mom's needs. The cost? Care home, small privately owned, was a couple thousand lower a month than memory care, a larger nation-wide company. Don't be afraid of the change, it could actually work out better for mom.

My mom passed after being in the care home for five months. She had been at memory care for about a year and a half. It was sad that we did not know about care home availability in mom's area. It may have been a better choice from the beginning.

And yes, falls did still happen. There is no way to stop them.

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What is a "care home"? is it regulated? Are the characteristics clearly defined? I have never heard of one.

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There are so many stories like yours. I had that problem with Mom in a nursing home for respite care. They found her on the floor one morning. That turned me off to a nursing home for Mom from the start. The problem is (even in the State of MD) that facilities cannot use restraints (even bed rails) to keep the patients safe. They can provide fall mats, though... They aren't supposed to even tie them in a wheelchair, but I saw one patient with a belt that she just undid and no one was watching... The only option is to place her in a nursing home and then hire a private duty aide to sit with her 24-hours-a-day (or however long is needed) to keep her safe. I know of a women right now who had to higher a private duty caregiver while her husband is in an assisted living facility. Seems so ridiculous to have to pay $10K for a facility, then pay another $10K to keep the patient safe! Who has that kind of money??

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The nursing home where my mom did skilled nursing rehab told us not only could they not use bed rails, restraints in wheelchair but they couldn’t even use alarms on the chair if they accidentally get up. I was told that some residents forget they are in a chair and try to get up and fall. The staff liked the alarm because it gave them a warning and could go help the resident. How is an alarm considered similar to a restraint? Doesn’t make sense to me.

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Assisted Living is self pay & very expensive. So, I fail to understand why you say she can't be in her own home or someone else's & the money be used to hire 24/7 help?

I believe you need to see a lawyer that is well versed in Elder Law.

You need to do your homework as well. It's crucial. The facility may tell you they can't keep her - so check with Georgia's State Department of Health to find out what the State Rules & Regulations are so you'll know what they are. Some facilities will do anything to get rid of someone whose "more trouble than they're worth".

If you don't want the responsibility of being your mother's advocate then someone else needs to take on that responsibility.

I don't know what sort of financial resources your mother has; but, it appears as if they are going to be exhausted in short order .

What a pickle!

Do you have siblings? If so, do they help out or will they be her advocate?

Go see a lawyer.

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Assisted living isn’t always self-pay and Medicaid in GA does have waivers that pay for AL. Also the OP has never said her mother still has her own home so that’s probably why she’s not living there and can’t live there. Her funds are limited. She doesn’t need to waste money on a lawyer, a lawyer isn’t going to keep her mother in AL.

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Well, for sure the ALF has to follow the law. And in my experience, the residents do have to be able to do certain things in order to qualify to be in the ALF. So what is the reality here in terms of mom meeting the regulations?

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My mom was at adult day service then they discontinued the services. I think they wanted the few clients there full time....more money in there pocket. So we brought my mom home full time had bad services with AHN but my brother and I assisted her with walking and we never ever had a fall with her. She has osteoarthritis since she’s been 52. On our local news a lady at the GSS said that McDonald’s paid more than these program or facilities and couldn’t find the help they needed cause you didn’t need be educated for this kind of work. Yes you do need to be qualified and paid more these places make quite a bit of money. Just remember all you people treat the people in these places as your own mom or dad or relative, you will be there one day too!!

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Sad.

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I am a Director of Nursing at an Assisted Living community. Though I would not have asked you to leave, there is very little you can do to change their mind. If they issued you 30 notice there really is not going to be a way to change their mind.
A Nursing home is not going to stop the falls either, the only thing I can say is that at least they have more staff typically to help lay eyes on her and help her meet her needs. Most of the time when they are falling it is due to a need they feel they have, such as going to the bathroom, so they do what they have always done and try to do it themselves and end up falling.

As for hospice...I have 2 on hospice in my community, it provides extra care and more eyes on my residents, I always love this option as it means they are allowed to age in place.

You didn't mention in fall precautions were in place such as floor mats next to the bed, no side rails, clear path to restroom, if you haven't maybe you can buy more time by offering to do so.

I wish I could give you more hope. God bless and good luck!

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This could be me. I have a mom with Parkinson’s who has falls. She’s at home and I want to place her somewhere but afraid that this same thing will happen to my mom. Upsetting. Sorry your mom is going through this.

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Asked to leave assisted living. What are my rights here?

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