Is there anywhere to find a listing of facilities, without going through a service?

You can spend a few hundred for a consult with a medical care advocate who can give you a list of good Medicaid facilities based on their experience. You cannot find them on the spot because the best places have wait lists. You could be advised to apply for a few and wait it out. Your problem is while you wait, there is already less than 6 months of private pay

1. You really need to talk with an Elder Law attorney about Medicaid planning. You may not need to spend anything near that $80000. See: https://www.naela.org/

2. I am in Florida. The state agency tasked with monitoring facilities (not that they do a good job) is the Agency for Health Care Administration. From their website you can get a list of facilities, by type (e.g. NH, AL) - you can look up each and get a lot of info to compare (e.g. for profit or not for profit; see how many beds; whether they take Medicaid), but there are not any photos. See -> https://quality.healthfinder.fl.gov/facilitylocator/FacilitySearch.aspx

Photos can be deceiving in any case. It's best to visit. To see. To hear. To smell.

3. What has been shared with me is that more rural facilities are often better because staff tend to be local and are often connected in some way to the residents (e.g. a neighbor's sister). A connection to the residents generally mean better care. ** My mom was in a high end "warehouse for the elderly" and sadly had the look of a plantation. While there were some excellent staff, the overall experience, and what satisfied management and the owners (profiteers) was institutionalized neglect.

I’m sorry, you are not missing anything obvious. In my state, there is no complete list, much less something with prices. A few years ago, the social worker gave me a list of rehab hospitals and even that wasn’t complete.

Each state has an office of aging. Sometimes, it is at the county level. Within that office, there is an agency for long term care. To find the office, look for SHIP, those are the people who can answer questions about Medicare insurance. There is a sister program for long term care facilities. In my state, the name of the program is LTCOP.

I live in a state that has less than 2 million people. The last numbers I saw, there were over 650 licensed facilities. I don’t know how many of them will take Medicaid.

The plus that I found by using a managed care referral service is that if they refer you to someone, you will at least get a callback and tour. My mom is private pay and there were some facilities that I was interested in, that never returned my call, even though I met them through a senior fair and they said they had openings.

In my state, $80,000, will not last for a year under private pay. So it’s best if you start working with an elder attorney or someone who can navigate you through the Medicaid paperwork. I heard the paperwork is extensive and can take months as they look back 5 years.

P.S. Many of these places are run by corporations that have multiple locations. Although each have their own pricing, they are aware of each other and can refer you to other places and locations.

Weary, on your concern that if the AL was to be sold then the new owners are under no obligation to continue with your Sisters AL Medicaid…. yes that can happen but there should be safeguards.

Heres why, & hang with me as not exactly straight forward. Medicaid is a huge, HUGE, program. LTC Medicaid aka long term care Medicaid is the custodial care program that pays for room&board in a skilled nursing care facility is dedicated funding under federal law to the States for those who show to be “at need” medically for skilled nursing care in a SNC facility & “at need” impoverished. That is the demographic for this program. - & as a side note why census is mucho importante! - Anyways States can request to the feds to have some of that dedicated LTC $ to be “waived” to go to other programs that service the same demographic. States can do this for over age 65 programs as well as other Medicaid programs. Your Sister is on a AL waiver.

LSS ends up a whole bunch of “waiver” programs. Waivers mean $ is shifted. HOWEVER as waivers are NOT dedicated funding they have to be requested/refiled every 3- 5 -7- 10 years. Waivers not permanent or dedicated funding so uncertainty $wise. Plus are tied to whatever entity applied for the waiver from the Feds. By that I mean, if the State Dept of Aging 10 years ago was all gung-ho on shifting $ from SNF to AL for waivers in 2013 but now in 2023 it’s a different landscape and State Dept of Aging are all about pouring $$$ into PACE day centers and phasing out $ going into AL waivers. I’d be way waaay more worried about this happening than anything else. So ask what placement plan they have should the State AL waiver phase out… it probably would be a group home unless she can be assessed to show at need for skilled nursing care in a SNF. They have to have a plan.

For an AL to even choose to participate to have a Medicaid bed has a lot of uncertainty attached to it. To offset that uncertainty what an AL will do is have a limited # of Medicaid beds available with a waiting list for those limited # of beds. It lessens their risk. They should be required to do some sort of “coordinated placement” should the waiver stop….. if in your area PACE is getting done in a big way that - I bet - is what will be encouraged to happen. So be aware of that and push back on that and push back big time as your Sister is not in the way you described her is at all suitable for PACE.

Please realize most AL do not participate in Medicaid waiver program. They don’t need to as the costs are so much less than a NH so AL can easily fill their rooms with private pay residents.

There’s also other factors that enter how waiver programs get run.
My mom was in IL part of a tiered facility (IL to AL to NH & w/hospice wing) whose AL had waiver beds that were in theory “available” (as how they show up in State profile) to anyone “at need” but actually were used by current AL residents 100% ready for NH side but waiting for a LTC Medicaid NH bed to open up. For us, that it was a tiered facility was a big part of why this place was selected, as I happily & incorrectly thought mom could easily segueway along from IL to AL to NH as her $ ran out & her health needs increased. But then found could not ever EVER happen as those few AL Medicaid AL beds were essentially NH way station beds & private pay in AL would be waaaay more than 2 years. So my mom ended up going from IL to a different NH onto LTC Medicaid and bypassing the whole AL phase…. unusual but can be done. My point is just because a list shows Medicaid AL bed availability it may not in real life actually be available due to how the facility uses that bed. There is a lot of gamesmanship, both good & bad, that happens.

also, If you absolutely do not want to be POA, your Sis can become a ward of the State. So a Guardian appointed by the State takes over the decision making process for her. It does happen.

I am glad that you do not have POA and do not want it. However, you are doing most of what a POA does. You are correct that this amount will cover a bit of time, and your sister is in a facility that then will assist her as time progresses with further needs.

You say you intend to subsidize. Please DO NOT. You will need ever single penny you can save for your own care.

Currently you are doing a LOT. I applaud you. Know your limitations and when the State needs to take over guardianship let them would be my advice. And thanks, Weary, for all the complete extra information. Good luck to both you and your sister. Sounds like you both are doing a great job given the burdens placed upon you.

I was typing on my phone, and didn't go into detail, but here's a brief overview. I placed my mom and sister earlier this year together into an assisted living facility which allows a transition to Medicaid pay after two years of self-pay. My mother passed away a couple of months after placing them there, and I have moved my sister into a one-bedroom in this facility, and she is on a waiting list for a studio, which is a bit cheaper.

My sister is on SSDI, just turned 60, and has a range of physical health problems. Her feet are deformed and while she is able to walk short distances, she uses an electric wheelchair to navigate the facility (paid for 100% by Medicare.) She also has severe facial pain, similar to trigeminal neuralgia, and takes pain medication to manage it. Other physical issues include arthritis, temperature dysregulation, morbidly obese, a severely dysfunctional digestive system, and so on--in short, her health is really bad. However, she is able to take care of all of her ADLs at this time, except for mobility.

But--she is low competency. She is not, and has never been, able to take care of herself. She has lived either with my parents or in an apartment near them all of her life. She did not do well in an apartment on her own, wasn't able to keep up any of the basics. A brief stint away at school was a total failure. She has been a aide in nursing homes in the past, and while she tried other jobs, she was not able to stay employed. She has done the work no one else wanted to do.

She is not able to handle IADLs--she does not cook, cannot handle her own finances, bills go unpaid. She does not show signs of dementia of any kind. This is a difficult thing to define. As I write this, I feel it makes her sound worse than she is, but the bottom line is that she cannot live on her own in an apartment. She is driving mom's car, but at this point, shouldn't be. My lawyer was really concerned that she still has access to a car, though she only uses it for short distances (store, pharmacy,--but she has a clean driving record.) Again, the AL is a good fit for her. She mentally and physically fits the profile of someone 20 years older in bad health. I consider her mentally to very immature and vulnerable.

The AL facility where she is currently living is really great. Actually, she is a big part of the reason I placed her and my mother there; even though it is a more expensive facility, the fact that they will transition to Medicaid pay after two years of self-pay was huge. My concern is that she might possibly not qualify for a Medicaid room. I think her needs go beyond simple custodial care, which is not covered by Medicaid, but that would be for the Medicaid people to decide. I have spoken briefly to the director of her AL, and it sounds like they simply defer to Medicaid for the decision.

I do have an eldercare attorney, and we will be seeing him in a couple of weeks to set up my sister's affairs. He has said already that if the facility is sold, they do not have to honor the Medicaid. This seems crazy to me, and I will have him clarify this when we go.

I am not looking for a way to get around tours and good research. Apparently there are close to a hundred ILFs, ALFs and NHs in the general geographical area I am looking in. I just find it hard to believe there isn't a list online somewhere with addresses. I am aware that her approx. $80,000 in assets isn't a huge amount of money in the world of institutional care, but add in about $1,000 a month of SSDI and it should be enough for a couple of years of self-pay in many places. She has enough to finish out the necessary two years in her current place, and if I had a guarantee she could continue on there it would be great. I was just really taken aback by the seemingly narrow requirements to be on Medicaid at this AL--seems you are in danger of being either too healthy, or too sick. I am just exploring options now before she goes through too much of her money. :(

If you are going to do drive-bys, don't necessarily discount older facilities that don't look so spiffy on the outside. Some of them can have very caring staff and good programs. And sometimes an older building might be in the process of being replaced by management with a newer one elsewhere. My brother in law was in a veteran's home which was the original vets home in our state. Rooms were tiny, almost everyone was in double rooms, and the building was old. But it was spotlessly clean inside, no odors at all, the staff were great, medical care was very good in general, and they had excellent programming. As it turned out, there were plans in progress to build a new state of the art facility, and even though it took several years, it's now open.  And during this time, my brother in law's funds were exhausted and he's now on Medicaid. He now has a huge private room and full bathroom, the staff and programming continue to be excellent, and the new place has all kinds of bells and whistles: a movie theater, chapel, barber/beauty shop, snack bar, even a vets "club" where residents can go watch sports, play games, and even buy beer/wine.

As they all need to be licensed, I'd assume the department in your state that does the licensing would be the place to start.

No one is going to post their prices, though. They need to find a way to get you in to visit, and that's the incentive.

Our state DHHS has a listing of all facilities licensed by the state, the level of services provided, and whether or not they accept Medicaid. Costs are not included so you'd have to call each facility about that.

Who DOES have legal responsibility for your Sister?

What is your sister's disability, and who currently manages her care?
Is her disability one that renders her mentally incompetent to manage her own care?
Are there physical disabilities?
Does sister already have a social worker involved in her care?
Have you already accepted POA for your sister?
Where and with whom does your sister currently live?

While 80,000 sounds like a lot of money, dependent on level of care it can be gone in 6 mos to a year. Many ALF don't wish to take patients who will move on to Medicaid facilities so soon, and since they are the ones who pay the placement companies, you will likely get the polite hang up. Sadly your sister is a commodity in the military- industrial complex. I myself became so frustrated with "follow the money" when managing care for my brother that I came to describe him to facilities as "a million dollars on the hoof". No one hung up, as you can imagine. As to the on the hoof remark, one must be from a farming family to understand.

You have some BASIC concerns and decisions here. Including how much responsibility you want in ANY of this. If you are not POA, you have the decision in whether you wish be one, or to remain as one.
I would NEVER encourage anyone to take this on.
Before you accept any responsibility in any of this you need to know what the job entails.

I highly recommend that you see an elder law attorney to make decisions for how much you can/want to/will take on.
Managing care for a person who is going to need to apply for, and who will be only a part of the crucible of "responsibility accepted".

More details will help us answer you better. But the first answer is in. Placement services that you don't pay for are not going to be very interested. That leaves you with the internet, the facility names and hours and hours and more hours of questions. And dependent on the needs of your sister, that will only be the beginning of the hours spent on the phone with SS, IRS, Medicare/Medicaid, doctors, hospitals, attorneys, facilities, billing departments and entities you never even imagined.

I so wish I had better news for you. I will check for your answers to my questions.

A Place For Mom is only looking among the facilities they have a contract with so although it can be helpful their list is far from complete. I would start with your office on aging, even if they don't have a list they can probably point you in the right direction.

It’s time consuming to research but well worth it in the end. It’s better to prevent an unpleasant situation by being prepared than to walk into something blindly.

You don’t have to go through A Place For Mom. When I was considering places for my mom, I googled it.

I took the time to call each one and tour them. I felt it was important to tour them. This is not a temporary stay. It’s a place where I wanted my mom to be comfortable.

If A Place For Mom said that that didn’t have a suitable facility to suit your sister’s needs, I would assume that are referring to price and the level of care needed for her.

How old is your sister? What type of disability does she have? Would a group home work out better for her? Have you spoken with someone at ARC, Easter Seals, etc? What about a social worker?

Best wishes to you and your sister. I hope that you are able to find a suitable place for your sister.