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If you look at the questions= there are none about how to change laws and regulations concerning our elder parents and soon to be ourselves in this situation. Why does the state take away a persons right to choose how their matters are handled once they decide to move into a assisted living facility which is not state funded= all is private pay! How are the operators of these facilities able to raise the rent however much they seem fit? Why doesn't the state step in to regulate that? We all know that Social Security pays so much and the pensions and other income at 84 yrs of age don't go to far..
My mother has lived in a assisted living facility for 3 yrs.. it's her home and she loves it; but the facility is raising her rent faster than I am able to keep up with! Its just sad for her to be forced out of her home someday because they keep raising her rent every year= her increase monthly has been $360.00 more since she moved in.
How would you guys handle this? Whichever way you look at it we will all be elders someday; what do you think will happen to you?
Brian Fisher

My husband had ALS , I was his caregiver for 3 years .Its an overwhelming job .Forums like this are invaluable for information. I know how frustrating this can be , but most of us don’t have the time to lobby for anything .
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Most here are too busy being caregivers or trying to recover from being caregivers, to throw themselves in to politics and trying to get new laws passed.
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Well, I will ignore your beyond rude header and say this: nobody can really afford Assisted Living private pay to begin with, so what's the difference if they raise the rent once a year? In for a penny, in for a pound. That's my philosophy. A person would have to sell their home for several hundred thousand dollars in order to afford an ALF, and even then, that money would only last a certain amount of time.

My folks have been in AL since 2014 and mother's money will run out in about 18 month's time. Then I will apply for Medicaid so I can get her into a SNF. They didn't have a big house to sell, either...just two stocks which turned out to be valuable, thank God, which afforded them the luxury of ALF living.

The way I see it, your mother is lucky to be able to live in an ALF at ALL, as mine is. Most of us poor slobs don't have that luxury. Raising the rent once a year in accordance with COLA is standard practice in this country. Even SSI and the VA give out a raise once a year.

And, I will also say the government is involved in ENOUGH of our affairs already without having them regulating private-pay facilities which would then turn to crap overnight, dontcha think?

So, to answer your question of 'what do you think will happen to you?' I will say this: I won't be able to afford an ALF so I guess I'll just wither away & die in my own home, since I won't mooch off of my children. Better yet, I'll take a suicide pill which is legal in my state and save all the muss and the fuss for all concerned.
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<author of post insert apology to AC here>

psst! psst! Brian, that would be you. it’d be a good start, bro. just sayin’
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Mr. Fisher,
Please update us as to how YOUR lobbying/advocacy commitments are going.
If you can find time between caregiving and gathering signatures on petitions for the changes you describe, could you please share the outline of your game plan for us so we can do our best to help the elderly and their families? Please include time management skills, balancing life and funding resource ideas for lobbying as nobody here seems to have any hands on experience caregiving.
Lastly, Mr. Fisher, although your concerns and frustrations are valid, the name of your posting is ignorant. You see, this website has saved more sanity and lives than any regulation could ever save an assisted living resident rental rate increases in dollar amounts.
I, personally take great offense with someone who talks out the side of their neck especially when their necks just a flapping away about things and others they have zero clue about in the first place. Especially when it’s flapping about something so dear to me, such as Agingcare, for example. Either a turtleneck or a scarf helps to muffle an over active neck.
I have enclosed a gift card for you from My Neck Runneth Over that’s valid at any of their locations. They have a HUGE selection of scarves and XS- XXXXXL in turtleneck sizes. Your welcome, my pleasure.
Have a great, more precision directing frustrations day!
susan
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i guess we have to do our homework..
It may be worth it..
15 years plus and keep on keeping on...It's tough, but we do what we do, because we were the ones who could do what we need to, for the ones in our family, circle.. Can't imagine not doing this if we were asked or nudged to do this. I would not or could not decline the caring of my Loved ones. I don't think I was good at it, but I tried. And it helps when you have backup.. Had my friend move her mom with mine.. until her sister retired, the friend said: " Great News Sister !! It's you turn to take care of Mom!!" I really missed my backup.. we would call each other saying the hamburgers are hot and the milkshakes are here, lets eat and dance with our moms :) Those were nice times.
so make the best of it... It really doesn't last forever... May seem like it, but it really doesnt. And you need them close to you... I need them within a 3 mile radius. That's good for me. Had them between me and work...
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BrianM2018 I think the topic you are starting is an important one and I hear your frustration. I don’t think however that starting with an attack on this forum is the way to encourage a worthwhile discussion. I’m not trying to argue with you but it seems to me you are missing the point of this forum and the fact that there is a place for your topic/question right along with the caregiving questions and advice you seem to have less interest in.

If you truly want a discussion about the laws and elder facility regulations and how they affect us now and how they could be better in the future and I hope you do, here is my take. I’m assuming you are in the US, though I do know I shouldn’t assume anything. I just don’t feel like losing what I have already written to check your info as sometimes happens to me so I will continue as though you are in the States. I’m a little confused by some of your responses here but I’m chalking that up to your frustration and will say the biggest obstacle here is as you point out, that IL & AL facilities in this country are primarily privately run businesses. They have to abide by labor laws, health laws and of course elder abuse laws but they don’t generally provide services covered by Medicare so their fees aren’t subject to those regulations. We as patients, caregivers, families choose a residence based on many factors the least of which isn’t surroundings and staff which means of course more expense for the business to acquire business, supply and demand if you will. They are offering a service/product like any business does and cost is always a two sided factor for them. Like a hotel for instance, it costs more to stay in a room with more amenities, newer facilities than one thats clean and offers what you need with less “comforts”, extras. When you purchase a new car you pay for the basic quality and then more for each feature and you get to decide what’s worth it to you and what you can give up. This may be overly simplified and there are other things involved when it comes to the care of our loved ones but the basics of choice are the same, given we have the means to buy a new car or to place a LO at all.

While the facility your Mom lives in provides care services they probably don’t provide medical services covered by Medicaid or at least many of them, your mom goes to her providers or is billed by the provider the facility has come in if you prefer and is visited by the same medical services she would be if she were in a private house if she needs them. The facility works with these providers, the providers don’t work for the facility. Staff that does work for the facility aren’t covered by moms medical insurance, the facility doesn’t bill medical insurance so they don’t deal with Medicare or Medicaid and therefore aren’t restricted by those rules. I was a member of our local volunteer rescue squad years ago, we had always been supported financially by the town as well as subscriptions which were really donations from the public. There came a time when we decided to start billing so we could collect for our services from Medicare (we have several elderly facilities in town, large elderly population) and learned just how much they dictate your billing across the board if you are going to do that. They require you to bill everyone if you are going to bill them and then dictate how much you can collect which affectively dictates what services you can offer because they are restricting the money you bring in. The paperwork and oversight required hiring someone to do it and that’s before paying the people or purchasing the equipment to provide the service. In my opinion this is in large part why there is such a difference between IL/AL facilities and NH/LTC facilities in this country but it’s the difference in services that is the reason there is no state or govmnt oversight in fees for facilities like your mom’s. The root of the problem & ideas to fix it is a discussion I would welcome.
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You filed your statement under both assisted living (AL) and skilled nursing facility (SNF). Do you understand the difference? SNFs offer inpatient rehab i.e. they are not residential. ALs are residential and are not rent-controlled. Some ALs are condos. Your mother's neighbors really should be the ones complaining. Perhaps that's something you can look into organizing for your mother and her neighbors.
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You are absolutely right - this is not an advocacy website, in fact it is owned by A Place For Mom, a middleman business that earns their bread and butter by working hand in hand with their partner facilities. It is, however, very good at what it does, which is to provide a forum for caregivers to meet one another and to provide very good information about dozens of topics that are useful to those involved in caring for their elders.

It's great to be gung ho about senior's advocacy but there are many lobby groups who do just that, AARP being the biggest and most well known.
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Just a very casual mention of something that might be “food for thought”.

My husband and I have cared for several elderly relatives, and he decided he wanted us both to have long term care insurance.

When the premiums were presented to us, mine was far higher than his, for 2 reasons, FIRST, as a female I was likely to need coverage longer than he, and SECOND, I was 100 pounds overweight.

I tried desperately to convince the company that I was 39, and that effort proved unsuccessful, so then I decided to lose enough weight to lower my premium. With 90+ pounds gone, and doctor certification that I’d done that, my rates WERE lowered.

If I want to change something I find difficult to deal with, I may be more successful by first changing whatever I can about myself.
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You are absolutely right; businesses are making huge profits from the legal exploitation of a vulnerable population. Where I live, there are quite a few not-for-profit ALFs. That aggravates me even more since they receive tax free status and government grants while their CEOs make high 6 figure salaries. My son is an accountant for one such organization and what they get away with legally is appalling. But discussing laws and regulations here can be a slippery slope because it turns into a capitalism v. socialism, political argument...something that is strongly avoided on this forum. Not just for the verbal melee that will ensue, but also because this is a sponsored site and many of those sponsors are the very businesses you hope to regulate. I wish you and your mom well. Sincerely. I hope everyone will consider these issues when they vote in both local and federal elections.
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Brian I hear that your frustrated and I don’t blame you but taking the tact you take here with someone simply giving you the input you asked for doesn’t help you get a real, productive discussion going, it just makes you sound like someone trying to elicit an argument. By the very fact @isthisrealyreal is here indicates they probably are or were a caregiver and if you have spent any time on this forum reading through questions and responses, which I can only assume you have given your opening complaint, you know how ridiculous the response “I’m a caregiver...are you?”... is directed at @Isthisrealyreal. Again I hear your frustration but if you are too hot about this to actually consider feedback and dialogue about it maybe you should wait until your in a better frame of mind to engage on this here.
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Brian, I am sorry with what you are struggling with, I can see you love your mom.   Assisted living facilities ("ALF") are not generally state supported (in some states, they can be, so you should look into that).  There is barely enough money to help pay for nursing homes, and as the baby boomers age, it will become more problematic. 

People who have reviewed information on this site are aware of the limited help with ALF costs, and that not only can ALFs raise prices in general, but that as the loved one needs more care, that can result in an additional raise in price.  In most states, rentals are not price controlled.   If you cannot afford an increase,  you have to move.  Of course, the older you get, the more difficult that is.  One ALF that my sister and I looked at for my mom has "friend" units, with two bedrooms and a living room/kitchenette, which would allow a significant reduction in cost.  I would also advise people, make certain you have enough money so that when needed, you can move to a nursing home and have enough money to private pay while waiting for Medicaid to come through (if not, your choice or nursing homes will be limited).
As to myself and my siblings, we either have long term care insurance or QLACs (annuities that start at age 85).  Because these annuities start at a later age, they provide more monthly income, and in our cases, together with SS, can provide for ALF.

I wish you the best.
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Paying for a resident to remain living in the facility of her choice can be done through:

Insurance (only all too often: "you should of thought of that beforre...")
Negotiation with the facility
Sale of assets
Drawdown from estate
"Crowdfunding" from family
Subsidy, covert or explicit, from other residents
Relocation to more affordable option
Occasionally, local or more widespread media lobbying

The facility your mother lives in has to pay for: estate management - buildings; utilities; taxation; staff wages and salaries and benefits; regulatory and administration costs; training costs; catering; cleaning; supplies; activities. They may also have shareholders or investors or lenders to satisfy.

Some of those costs will be governed or at least influenced by state legislation. E.g.: the state lays down a minimum wage. It raises the minimum wage, in response perhaps to popular pressure. The cost falls on the facility, which can either fiddle creatively with its workers' contracts and cheese-pare their hours or suck it up and pay them more.

So: some costs rise with ordinary inflation, others at a higher rate because of other factors. But the one source of income (unless the facility is part of a subsidising charitable organisation) is the residents.

If the state were simultaneously to legislate in a way that increases facilities' costs and caps residents' rents - where's the money to come from?

It is very hard to find any statements from political, professional or sector leaders in elder care which are not hooey, one way or another: everybody likes to pretend that high quality care, with respect for elders' rights and workers' vocations, can be achieved without ruinous cost to anyone in particular in the face of rising numbers and lengthening life spans.

Say a government department proposes some form of compulsory long term care insurance - instantly the headlines will be full of squeals about "DEMENTIA TAX!!!" Suggesting any such thing is a "courageous" decision (in political terms, a controversial decision will lose you votes. A courageous decision will lose you the election, as Theresa May proved quite recently).

Insurers are not much less guilty. A policy which actually will cover the costs you are *likely* (but of course never certain) to incur will look dizzyingly expensive at the time when you are considering buying it. Customers gasp for breath, clutch at their chests and decline the offer. So insurers offer them cheaper policies and gloss over the gaps in cover. The result is that your (still quite high-end, high quality policy with a reputable insurer) will cover perhaps one third or one half of your actual costs when you begin to claim.

Some facilities work in partnership with residents on this point: you can buy an annuity with a (very substantial) lump sum which you pay to the facility. This covers your rent and care for, say, three years; the facility invests the lump sum, and thereby takes the investment risk, and in return guarantees your continuing residence with various pre-agreed conditions attached (such as contributions from family). But as my POA sister so memorably put it: "if she dies before then, the money will have been wasted." Yes. Effective insurance is a terrible waste of money if you never need to claim. It's the nature of the beast, alas.

The report that needs to be commissioned, researched and written is into: "Care in older age. How much, and who's paying?"

I couldn't agree more strongly that we are talking not about our parents and other respected elders, but about OURSELVES. Your question "what do you think will happen to you?" is not one that people are very realistic about. Probably because none of the answers is all that appealing.
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Assisted living facilities are in the business of making money. They are for profit entities. That's why you see all those fancy commercials of seniors living the high life, eating lobster and crème brulee, and doing all sorts of fun activities. They exist to be some kind of glorified elder sitting service. Same with in home caregiving agencies. They want your business. If you want to extend it further, pharmaceutical companies. Why do you think you are constantly bombarded with ads for medications? They want your money. That's our society. If you don't want to pay for it, don't buy it. If you can't afford it, then it is out of reach, just as the local private golf course is out of reach to me. As someone else said here, if we had or want more of our tax dollars to go to elder care or don't mind higher taxes than we'd all need to come together to try to change the laws.
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For profit AL facilities raise their fees much more aggressively than not for profit ones. I can speak to first hand experience with that since my mother has been in one of each. When I first had her placed in a for profit facility I was under the gun so to speak as she all of a sudden was being kicked out of rehab and I was leaving town to help my daughter who was due to give birth. In retrospect I would not have placed her in that facility again. It was a facility near my home with a good reputation but we all grew to dislike it. Once we moved to another state I found a not for profit facility that we have been happy with. In her over 3 years there to date they have had only had one small increase.

I understand your frustrations but we here are not able to make the changes we all might like to see. You can get alot of advice here from many on different subject matters and there are many who have had multiple years of being a caregiver often in their own home as well as eventually placing their loved one in a facility when need be. You also can learn about different ways that might be funded.

You might get better results here if you start with less broad general questions. There is a wide array of experiences but no it is not a site that can get the aging healthcare of a nation solved.
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Welcome to Aging Care.com..

And GN !!
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Goodnight everyone!
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Here on this website, enter it into the searchbar above.
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what are the 8 odd rules?
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I am a caregiver.. are you? If so then you would know all the regulations and restrictions on a person that chooses to live in a assisted living facility.
Do you know the difference between a assisted living facility and a state funded nursing home? Usually at least here in Alabama a nursing home is paid by Medicaid= you have to have a limited income to be eligible to live there unless you pay out of pocket.
Assisted living is a limited basic community environment where a person can move into and have the comfort of their own private apt and still have a great community of friends and activities at their doorstep.
My "gripe" is that these places are not state funded so I cant see the reason for all the state regulations.. and how can these places be legally able to rent hike so much monthly each year..
So lets all just sit back until we get at a need someday for some type of assistance in our older years and then worry about changing the laws..

Sorry... just had to say! I'm a caregiver to a 84 yr old Mom for 7 yrs! And I am 58 yrs old..
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I would really like to.. just that I have talked with people in the levels of state reps and I have been told that regulations can't be changed and that if I didn't like the way things were then I could just move my mom out of the facility.
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My mom has enough income to support herself; just that with it all being private pay= there should be a law or regulation preventing these assisted living facilities to keep gouging their tenants!
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8 Odd Assisted Living Rules to Be Aware Of
Anne-Marie Botek
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I don't want to start a conflict! But our society is based on individualism. If we followed a more collectivism approach, all paid massive taxes & let the state pay & organise our lives... well that might look like communist Russia?

Maybe the Scandinavian countries get it right. Higher taxes but better education & child care. I know nothing of their elder/pension situation.

I agree it's unfair to put up the AL rent so much - matching CPI & pension increases would be fairer to residents but I'm sure the argument will be that won't cover costs.

In Australia there is currently a Royal Commission into Aged Care Quality and Safety.
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Brian, your passion on this subject would be perfectly channeled into creating a new forum for such an effort. Why don't you lead the way?
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Brian this forum is supposed to be caregivers helping other caregivers cope with the tough reality of caring for an ill, aged or disabled loved one, or maybe not so loved.

It is not intended to be a venue for changing laws and oversight of facilities.

I bet some would be interested in any ideas that you have about getting changed implemented.
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