It's going to get worse. Soon.
85
The most horrible place on earth I've ever stayed at is Village Care on Houston Street, NYC. First time I ever came across Nurses I was actually scared of! Shocking they were actually given an award last year, Obviously the folks handing out those awards never had the unfortunate situation of actually being a client at this completely unfriendly & bordering hostile venue.
70
A better approach would be to identify what care people want, and to work from that assessment to determine what facilities and services will be provided. Instead, its done now the other way around.
27
A realistic picture of old age will better inform people of all ages: We cannot put physical strength in a savings account like money. However, it is counterproductive focusing on the wealthy and facilities that cater to their needs.
30
It totally defies commonsense. How could an assisted living or senior care facility exclude anyone who needs wheelchairs?
90
A few issues arise here.
The issue is not merely providing access to the handicapped, it's the cost of providing that care. To properly and adequately care for wheelchair bound people who cannot properly care for themselves is expensive. I suspect that operators are concerned, in some cases reasonably and in others not, that the additional cost for this care will lower or eliminate profits.
On the other hand, EVERYBODY is entitled to good and reasonable care no matter their condition, physical or financial.
The only viable, but still politically unrealistic, solution is to better regulate this industry so that it is able to achieve a reasonable profit (6% ROI? per annum?) in exchange for a guaranty of good and reasonable care for all. However, this is expensive and the gap between the revenue needed for operators to earn a reasonable profit and what people can reasonably afford (30% of AGI per annum?), which gap may be substantial, will have to be made up for with taxes (federal and state). We can't expect the operators and/or patients to bear all of the costs.
If it is important enough for us a society to provide good care, we should be willing to pay for it.
56
As someone with a parent in assisted living in NY, I can assure you that this is not how it works. In every facility we looked at people pay more for additional "levels of care". That means that if you cannot shower by yourself, you pay more than someone who does not need this service. If you cannot transfer by yourself, you pay more, Etc. This is not discriminatory. You pay for services provided, the extra attention of an aide for your assistance in certain activities. A wheelchair bound patient would pay more than an ambulatory patient, but still a lot less than a nursing home.
73
We all need a vial -- or several -- ready and at our disposal, available to use at our own discretion.
This is no way good way to have to exit, no to usher out an enormous generation ... and that generation is us.
Ice floes used to be an option ... too bad they are gone :(
70
This is outrageous.
32
I am not at all surprised by this from VillageCare at 46 & Ten. Awful admissions department that clearly discriminates against people who use wheelchairs and individuals who have a mental health diagnosis. I urge the Fair Housing Justice Center to broaden their suit to address discrimination against people under the ADA with a mental health diagnosis. They clearly discriminated against a person with a mental health diagnosis (prior history of - not even a current active diagnosis) by: losing paperwork, wouldn't accept applications for care, lied, came up with new reasons to not admit the person and putting new barriers in the way (redo all the paperwork and start over at the bottom of the waitlist as the original application is now over 365 days old). This was for somebody who was ambulatory and doing well in a private pay assisted living program, but was running out of money . Thankfully, they are doing great in another NYC Medicaid assisted living program. I have refused to recommend this facility to anyone for over a year now. I cannot tell you how disappointed, and saddened I was that a well respected facility so blatantly discriminated.
47
Suicide is looking better all the time.
130
So your only option is a nursing home?
12
New York State has gotten better at defining assisted living and designating different levels of care and monitoring, however, they are not in any case considered healthcare facilities. The aids are typically unlicensed home health aids and Med Techs which are used instead of nurses only require 15 hours of training by the facility followed by a short test administered by the facility. However, the reality is that if a persons primary need is basic assistance with daily living you’re better off staying home and saving your money. Sell the house and buy a two bedroom condo and hire a private aid, which in certain cases you’ll need to do by NY law anyway in assisted living. Assisted living is expensive, possibly as much as $90,000.00 a year for a 1 bedroom with basic care, laundry, housekeeping and 3 meals. Don’t be taken in by the amenities because in the end it’s all restricted somehow and those amenities often don’t include cable or phone service. So, stay home as long as you can. As long as you have some family support emotionally and who can visit with some regularity you should have no problem. You’ll be happier, healthier and, wealthier in the long run.
https://www.health.ny.gov/publications/1505.pdf
52
Assisted living facilities provide a collection of services that are difficult to coordinate alone. Private-pay ALFs serve a wide variety of foods that wouldn't be easy to get a caregiver to provide at home, dispense medications safely, and have someone available 24 hours a day but allow residents to be alone in their apartments at the same time. Social events are available, and transportation to medical appointments is too.
As a family member, I considered coordinating care at home. Realizing that having just one aide fail to show up or one snowstorm trap my relative alone at home for a week convinced me that I could not do it as well as a facility. Aging is more than physical. The cognitive, safety, social, dietary and medical needs of older people are why ALFs exist.
Private aides in ALFs are the last ditch effort before a NH. Most residents don't need them.
That being said, no one should believe the line at admission about supporting residents through their "journey". They can give you notice to leave at any time, they can refuse to accept you back from a hospital stay, and they most certainly don't want the place to look like a NH when prospective residents come through.
Admit your relative to an ALF with your eyes all the way open... if you can stand the stark light shining on the situation.
36
Not necessarily if you live in a humane state, which NY obviously isn’t. Last fall we found my brother living in squalor. Eventually we got him into the hospital (NH failing, he must agree to go to the hospital unless he is seen by EMT, Paramedic, Elder Care, Police to be not able to care for himself. He could keep them out of the house). He fell infront of the Elder Care person. In the hospital they found he had had a ‘few’ minor strokes. The town condemned the house, not an option. He was in the hospital almost a month. Then into an assisted living facility (new) that has several levels of care. 1. You can rent an apt there at 55. 2. If you have any mental disabilities, not just Alzheimer’s, you can get a studio (bedroom) with bath, cable & phone (you bring TV & phone). They feed you (he says very well), give you the cues needed to live as independently as possible, but the doors & outside private area are locked. You can sign out. We go see him every month, he leaves to go to lectures held in the facility, that he is interested in. He uses a rollator, because he landed in the hospital via a fall. He made a reservation for the 3 of us to eat Thanksgiving dinner in the outer diningroom. Only 36 dollars for us, & nothing for him. They also have a unit that takes in respite patients. With all the same things, but, furnished. They will take care of you all the way through hospice if needed.Oh, at his level now it costs $194 a day. He has GOOD long term care insurance. Expensive
22
Typical American Greed and Profit pursuit!
What of the fact that these facilities are private? Doesn't America have laws for the aged and handicapped? Laws against discrimination based on being disabled have been around for decades in most OECD countries.
I guess in America,the rights and protections we enjoy in more enlightened countries do not count when it comes to counting money and for this unacceptable inane reason (to do with making maximum profits) to actually trump the welfare, safety and/or security of people in this area and so many others seen in the U.S....is not morally acceptable anywhere else ...except in the "Land of the Free"
The Irony is palpable and so disappointing.
42
But, not everywhere. When the ADA was passed, many states just said, ok we go with that, no reason to change our laws, this trumps them. So when applicants get turned down, their families just look down shamed & leave. They don’t go to the ADA & say what gives. These places just don’t change policy, because the states don’t update their laws, to meet federal ones. New places have to hit all modern requirements. So, if, for any reason you have a problem you know will get you a refusal, check state laws & how to file discrimination accusations on both levels. We lucked out in being sent to a new place, & there being a vacancy. We were warned that if he is sent to a hospital for any reason we must keep paying for his room, or it will be given to someone else. He would be able to reapply, but, by then there may be a wait list. His long term care insurance won’t cover that, luckily he has savings that would. His Advanced Care Directive says he wants no lifesaving actions taken. So, he shouldn’t be taken to a hospital. I’m his guardian now. I’m his kid sister. I hate this. Cry a lot.
36
I have two parents in assisted living in Melbourne, Florida. I would have never imagined the nightmare that this has been for me; trying to comply with the "regional managers" who IMHO are a bunch of sociopaths, while also being the sole care-giver (and doctor-under duress-due to the incompetence of the other Drs I "tried"). Here, they can give you a "45 day notification" at any time for any trumped up reason. 2 years ago, they kicked out my mom, and it took me a year before a compassionate community director could right the wrong and re-unite my parents. Now, this director (a disabled veteran no less) is on the chopping block with a trumped up reason for HIS firing including successfully blocking a 45- day-notice for my DAD, now in his last stages of life, but still legally fulfilling the requirements of ALF residency. For-profit ALF's SEEM TO BE (it's now three sets of regional management and turnover) OK at the care-giving level but at the corporate level, I have witnessed a high rate of what I would call near-criminal if not actually criminal behavior. It's a nightmare for all. And no, moving them would just traumatize them-the place where my mom had to move to for a year was actually worse from a care standpoint. Best case scenario would be to keep parents at home with caregivers, not in one of these blasted places. Done with the "vent", thank you.
78
@doctorkim: Your "vent" is heard & empathized with. I think Florida is the worst state for this. A friend's father was in a facility in FL and when the family dared to complain about something, the response they got was "if you don't like it, we'll throw him out; there's a line of people behind him waiting for his bed."
59
Meanwhile, the irony is that many of these facilities strap their residents into the facility-owned wheelchairs for much of the day...for the convenience of the staff.
46
After breaking a hip in a fall into a stairwell I found myself in a wheelchair probably twenty years before my time. I live in an Independent Living community owned by Brookdale Inc. which is more like an apartment building with a large attached dining room and kitchen. Out of the hundred and fifty residents here only four of us have wheelchairs. One from childhood polio and the rest due to major accidents. I'm not sure about other states, but here in Washington State seniors have inordinate protections written into the law for handicapped and people over 55. we don't have the same protection as nursing homes or assisted living facilities but are still assured that we will not be moved until more services are necessary and have the right to appeal. Seniors are notorious for voting in large numbers and regularly. That should be enough to drive each legislature to do the right thing even against the opposition of industry lobbyists. Even though Brookdale Inc. has been reasonable and helpful, Without State protections private businesses will do what they need to do to increase profitability. The law is the only thing that will protect vulnerable people from the cruel rigors of market economics. This is May Day and a little solidarity is called for.
95
A Brookdale assisted living facility in Ohio was a 3-year nightmare for one of my parents and myself. My parent's death certificate attributed death to heart-related issues, but they could just as well have written bed sores because those were what precipitated his long and agonizing decline. The State of Ohio does not regulate these places adequately, if at all. The commenter who said suicide would be better is on to something important.
43
I can say this, at least the facility in the article is being honest that they cannot adequately take care of those in wheelchairs. My mom lived in a Sunrise and when she moved in she was in a wheelchair, but could walk on her own with assistance. They assured me up and down that they could care for her in a wheelchair and even if she became bedridden (which would inevitably happen since she had a neurological disease called MSA). Well, I can assure you, that they were ill equipped and inadequately staffed and my mom was not cared for properly because the staff didn't have the time to spend with her. They had to rush from room to room and my mom took way too much time to help. The bathrooms in this place were not even wheelchair or handicap friendly and neither were the dinner tables. You couldn't even roll the wheel chair under the sink in the bathroom... my mom had bruises on her knees from them wheeling her into the cabinet to get close enough to wash her hands and you couldn't roll a wheelchair into the shower either. So in my opinion the real travesty is facilities that over promise, under deliver and charge a fortune - these places should be SHUT DOWN.
85
Amen to that! Too many promise a lot and deliver almost nothing. I can relate to your parent's situation. One of mine had similar nightmare experiences at a Brookdale where profit is king.
28
So the assisted living industry has many wheeler dealers.
24
It is frightening to consider that even with the best planning and a supportive family, vague industry regulations such as those in effect in most states for the ALF industry can make the last years of ones life uncomfortable at best and torturous at worst. There are no easy solutions. Industry lobbyists have millions to influence favorable legislation while individual voters rarely know about the language in laws which affects their lives so much.
Changes in national immigration policy can/will have a significant impact on the availability of care workers. Ironic that many of those who spent time railing against immigration policies which allowed guest workers to enter the US will find themselves waiting for needed care because they denied the immigration of and path to citizenship for a workforce able and willing to care for them in the years they needed help. Fears and bigotry are already significant issues for people who want their care givers to look and speak just like they do.
As someone whose health requires the temporary use of a wheelchair, articles such as this one are very difficult to read. I know from my parents' experience that walkers and wheelchairs in the dining room were controversial and the policy was dangerous since not enough staff was there to walk residents to their tables from their parked walkers! Fears and bigotry again made lives more difficult.
Confronting elected officials is necessary to change laws. Our bigotry must change, too.
37
@Lynda: I agree with you about fear and bigotry. The other factor is just pure greed on the part of those who own/run these facilities; they're too lazy and cheap to hire enough staff and the right kind of staff.
Transferring people from walkers to tables and back is not rocket science, but there have to be enough staff members to do it who are trained to do it, and preferably they'll do it with patience and not exasperation. No one wants to be dependent on others the way one is in these facilities.
17
This article was like a dive into a freezing cold river or a bad flashback. Last summer two dear friends partnered for almost 40 years died within a few days of each other. Because one partner had multiple health problems and was wheelchair dependent they carefully planned their retirement. As nurses they knew they would need access to a full array of services for the disabled elderly. They chose a respected CCRC in Washington State - Panorama. And for several years they were happy with their choice - happy until they became ill and needed assisted living. And then when they needed assistance most they were told the wheelchair dependent person was not able to move into assisted living. The excuse was fire code regulations. She was in a wheel chair at the time they paid their entrance fees. The full state of her ability was assessed by a nurse and a social worker at the time they moved in. They clearly stated their reason for choosing a CCRC was to have the full array of services. And so my dear friends spent the last days of their lives, their last ounces of energy trying to figure out a solution.
I hope the members of the Board of Directors of Panorama read this article and comments this morning. You know the story as well as I do - I don't believe you are soulless bureaucrats - how will you fix this problem?
142
Put the people who run these places in wheelchairs, don't let them get out for anything and play on a non stop loop the song "Loco-Motion"
34
Paula, you'd do your readers a big service if you can find out what the law actually says about assisted living facilities in NYC allowing or forbidding the use of wheelchairs. There must be elder law specialists who know exactly what the law is.
From reading the comments here, it's clear that discrimination against anyone who needs a wheelchair for any reason is rampant - including excluding those people from dining with the non-wheelchair residents.
This is reminiscent of 19th century thinking, and I don't see how facilities that get Medicaid (FEDERAL) money are allowed to discriminate in this way. It's as anti-ADA as you can get.
51
The fact that someone uses a wheelchair does not necessarily mean that they require substantially more care. Colleges, schools, hotels, theaters, stadiums, offices and public transportation are all required to accommodate to wheelchairs... and yet their accommodation has not resulted in these facilities having to provide personal care for the wheelchair user. It is reasonable for a facility to stipulate -- and charge for -- the level of personal care they are going to provide, but simply banning all wheelchairs is discriminatory in the extreme and out of sync with the rest of American society.
64
“Facilities often justify their policies by citing state laws that are ambiguous.”
Our own building code is ambiguous, as elevator accessibility is vaguely determined by number of floors, rather than an actual measurement:
3002.4 Elevator required.In buildings five stories in height or more, at least one elevator shall provide access to all floors.
10
There's another side to this story. I used to work in an assisted living facility that accepted people in wheelchairs. Some of those patients (called "residents") had diagnoses such as strokes that required them to need a lot of help with their daily care. They needed to be lifted in and out of bed, on and off the toilet, and given a shower. In these very dependent patients, it was backbreaking work, often with the caregiver providing all the care alone. Caregivers are assigned a certain number of patients each day and sometimes it's 20 or more patients. By its very nature, assisted living is supposed to have limits, allowing caregivers to help residents with grooming, dressing, and light housekeeping. Assisted living facilities are not supposed to be nursing homes. I think the laws in NY and elsewhere that allow assisted living facilities to reject the wheelchair-bound are partially due to the issue of having to hire more staff. I think the laws in NY and other states reflect the facilities' reluctance to spend money to hire extra workers and make other accommodations for the wheelchair-bound.
106
@T. Waldron: Bingo! It's all about the bottom line: $$$
35
L - another way to think about it is "deficits". We all have skills - things we do well, and deficits where we don't do things as well. At some point in the aging process, the skills dwindle and the deficits grow. Some agencies I've heard of do a deficit check to verify the tenant is getting the care they need. The assisted living facility may even state "you need to be able to use the toilet and dress yourself and feed yourself" as part of the rental agreement. Once those skills go away, the amount of a) staff time and b) medical liability climbs precipitously. Yeah - it is about money, but it's also about making sure the tenant is comfortable and healthy. It seems as though we need an assisted living facility 2.0. Not quite a nursing home, but with a higher level of care.
8
Assisted living facilities are not considered health care organizations but, rather, living places. They are not staffed to take care of those needing more than a little assistance and would have to charge significantly more if they were. Does the majority have to pay for this extra care for a few or will there be differential payment that could pay for extra staff?
17
i think we would need to look at their books and see how much cash they are ''walking'' away with now before they get anymore
11
The entire point of "assisted living" is the "assisted" thing. My elderly relative lived in in an assisted living facility in a 1 bedroom apartment, that had various additional cost options for levels of physical care, including assistance transferring into and our of her wheelchair to go back and forth to meals and activities, bathing, meds, dressing. The entire building was ADA compliant and not t all "nursing home" It never would have occured to me that other states would not be the same.
23
The "majority" does not pay for anyone else's individualized services. When my mother was encouraged by her professional providers in her chosen CCRC to move from Independent to Assisted Living, her monthly rent went from around $2,000 to approx. $6,000. For every service she required above & beyond the minimum, e.g., medication supervision, assistance with showering, accompanying her to the bathroom, etc., she moved up another cost tier. She was paying upwards of $8,000 when several falls sent her to rehab with serious injuries. The trajectory of her illness was foreseeable to all but her and her family; the need for supervision as a person with dementia increased, but those needs were not accommodated. Nor were we advised that private assistance was needed in order to protect her safety. We did not even know this was done. If we had been fully informed, she'd have remained in Independent Living with nearly full time private care. To provide that care while in Assisted Living would have cost double their charges- upwards of $16,000 a month. Redress? Sorry, the industry is unregulated, so they have not violated any laws. Indeed.
40
Assisted living is becoming a huge and profitable industry. Care standards are lower (e.g. reduced number of registered nurses and more reliance on nursing aides) and consequently those men and women who require higher levels of care are left out. Marketing and occupancy rates matter more to the owners as generating profits for stock holders has surpassed care for vulnerable people. The consequence is that people with higher care needs have less choice and will need to receive services in publicly funded facilities while the assisted living industry skims off people with money who are required to have less needs. We baby boomers will regret what has been created by us and for us.
43
People like to feel they are better than thou if they put a relative who really needs a nursing home in assisted living instead. And disreputable assisted living places will take someone who needs more care and attention. Then they don't get the care they need.
13
@Randy: To me, signing oneself up for assisted living seems like agreeing to spend the rest of your life at sleep-away camp, where the "counselors" will control your quality of life and you don't really have a choice about much.
I honestly feel, from what I've seen & from places I've looked at, that a lot of the "assisted living" that's being offered to baby boomers is basically a big ol' scam: it looks good (a Potemkin village!) but the only reason it exists is to make the owners rich. "Caring" for people is usually a distant afterthought.
20
My brother has always been extremely shy. Lived alone. I worried about him just staying in his room, with his large TV, DVD player, & several hundred DVDs we salvaged from his home. He needs ‘cue-ing to remember things like showering, shaving, etc. So just before meals, they knock on his door, ask if he is coming to the meal, & they remind him of things he’s supposed to do. Other than that he is on his own. He’s out & about most of the day. He showed up when kids came for Trick or Treat on Halloween they told me. I was flabbergasted. I’m 8 years younger & he didn’t even like to come down from his room to see me dressed for Halloween & he gave away candy. He’s gained wait (& sizes), they even upped his portions cause he was still hungry. He has plenty of alone time. But, they love him. Which is so nice to hear. The application even asked for family stories. So, they could know him a little better from the first. These women care about him. Because he has had a ‘few’ small strokes, all in the decision making area of the brain, he can make a list of things he needs to do, then only do 1 or 2. They are his memory. When he moved in, because they were new, they still had vacancies. The staff had asked to hold the number of residents where they were for a few weeks, so everyone, patients & staff, could short of have a shake down period. CEO said fine. He might not be the most personable person, but, he stays away from residents. The Medical director is there for help.
11
When clicking on this article, I was convinced of the unfairness of such rules - but as I read the phrase 'even though they have elevators' it made me remember the special fire safety requirements for accommodating people in wheelchairs who cannot use the stairs during a fire.
In most cases, architects design an 'area of refuge' - most often enough space in the egress stairwell at each floor for one or two wheelchairs so folks have a relatively safe space to wait for rescuers.
I can easily imagine more than one or two wheelchair bound residents on a floor, potentially making a small fire into a human catastrophe.
So... although restricting wheelchair bound residents is unfair, accommodating them does need to come with fire safety upgrades to protect them.
13
Our community has an assisted living facility in a renovated 6 story apple packing warehouse. During the derecho some 4 years ago, the residents needed to be taken out of the building by fire department cherry-pickers because their level of care prevented many from walking down 6 fllights of stairs.
These are facilities for those needing just a bit of assistance, not skilled care.
11
"... even when, as in this case, the buildings have elevators"
I thought the requirement was that you weren't supposed to use an elevator in the case of a fire?
8
then all building must stop renting to people that could not walk down stairs from their apartments ..we could start with trump tower ..how would donald walk down the stairs..what about the children that cant?
16
'"But VillageCare refused to readmit her, saying she needed assistance with activities of daily living, including “locomotion"'
There is some unintentional irony in this statement. Assisted Living Facilities are generally places where people can go if they are unable to or require assistance with "the activities of daily living". These include (in most states):
Bathing and Grooming, Dressing and Undressing, Meal Preparation and Feeding Functional Transfers (in and out of bed or chair), Safe Restroom Use and Maintaining Continence, and Ambulation (locomotion - although not in the sense of the song).
In some facilities there is also support for people with memory problems.
If an Assisted Living Facility refuses to assist somebody who requires assistance (*note that word "assistance" as in "Assisted Living") then what IS the function of an "Assisted Living Facility"?
52
To take all your money and run far, far away.
39
I think we’ve hit on a theme here; assisted living turning away people that need...assistance. Doctors turning away sick people that need heart surgery (yesterday’s article..but just a second surgery) because they’re....sick. What’s next?
Daycare facilities turning away children because they’re too...lively? And heaven forbid, that child falls off of a jungle gym and breaks an arm. The doctors will no doubt fix that broken arm....but only the first time. Break it again...we’ll, the surgical outcome stats might suffer due to repeat injuries.
We must all be perfect. Or else.
39
Forcing wheelchair users into their SNF (skilled nursing facility) means higher payment, so why wouldn't Continuing Care communities do this? It's the profit motive, stupid.
25
Actually, for CCRCs it is the exact opposite. Keeping residents in lower, less costly levels of care is the more "profitable" approach. CCRCs are like insurance companies. The less they spend the more profitable they are.
12
Remember many facilities have buildings or floors for different levels of care. One facility might house Independent Living, Skilled Living, early Dementia Care, later Dementia Care, skilled nursing and nursing rehab. At each level, the costs go up significantly. So the facilities benefit tremendously from pushing residents into higher levels of care.
14
@Jim: But the CCRC's get to determine which level THEY think you need - and when they want you to go to a higher-level of care (with higher monthly payments from you), they'll push you to that level.
13
"No comment" from our sleazy governor's office? Hoping to squeeze a few more bucks from assisted living operators for your slush fund? Hard to believe you share genes with your father. Seems like this should be a no-brainer, Andrew.
18
This wheelchair problem is mostly a matter of optics and marketing, and has little to do with how best to treat and serve disabled persons who require wheelchairs.
To stay in business, assisted living facilities must ensure a steady flow of new occupants to replace those who die or move to nursing homes. Accomplishing this requires marketing, which virtually always includes site visits by potential occupants and, often, their adult children.
As a psychologist who went through this process multiple times on behalf of elderly relatives, I can assure you that nothing upsets and disheartens a prospective occupant or family member as much as seeing a group of wheelchair-bound occupants hanging out in the foyer of the facility, or seeing several wheelchair users at meals. It reinforces the reality, which few of us like to confront, that a loved one is entering the final stages of life, and reminds us of our own mortality. We also may feel guilt for "abandoning" a loved one. This is why facility operators want to ban wheelchairs or keep them out of sight.
Assisted living facilities have not clearly kept pace with state and federal disability laws and regulations. Not all assisted living facilities are created equal, so due diligence in selecting a facility is a must. Based on personal experience I suggest giving special consideration facilities owned by non-profit organizations, where emphasis on the bottom line is usually less pronounced than at profit-making facilities.
133
Unfortunately, my experience is that the non-profit facilities now charge as much OR MORE than for-profit facilities -- there is no guarantee whatsoever that a church or religiously run non-profit Assisted Living home will cost any less. I've visited Continuing Care Communities, run by religious groups and non profit status, which demanded that you prove you have $5 million in assets before they would let you move in.
19
The county my brother lived in has one. The old ‘county farm’. If there is a vacancy (thank God there wasn’t) you must sell your home & contents, Hand all money & investments over to the county, sign over you SS, & Medicare, any pensions, they will then take care of you for the rest of your life. Giving you an allowance of about $10 a month to have fun with. If you are about destitute, it’s a good deal. If you have anything, it’s highway robbery. We’d thought it would be a good deal, until my brothers mail started reaching me & I found investments of almost $2 million dollars. Not a good deal. So, you need all the info on your loved one you can get. Bank accounts, investments, what the house is worth (for us, it’s a liability as it must be torn town on our nickel). Also any bills owed every month. My brother has been paying for OnStar & Satellite radio for 2 cars he hasn’t had in years. All in all he is rich. We aren’t. His needs are met without touching his money. So, when he needed clothes, bedding, we paid for it, then I wrote us a check for the cost. Feels creepy. But, we can’t afford to get him what he needs, he can.
9
It’s not only assisted living residences. My husband and I looked into buying a new unbuilt home in a Sun City neighborhood. He was confined to a wheelchair. I specifically picked a model that could easily be modified for someone who needed a wheelchair. Doorways needed to be modified and the bathroom to accommodate a roll in shower chair. Days later we were informed that Sun Cities architects determined that the plans couldn’t be adapted. Our deposit was returned although it took weeks to get it back.
It was quite apparent that someone in a wheelchair didn’t fit into Sun Cities active lifestyle model.
88
A friend lives in one, where they have wheelchair races. Active enough? Those not in wheelchairs think it’s unfair they can’t use someone’s chair & enter.
6
My mother was for a short time in an assisted lving facility. It was physically, ver nice. Her room was great. But the hallways were very long, an incredible struggle for someone dependent on a walker. Getting from the dining room to her romm - eas rather like putting handicapped parking as far as possible from a store entrance, like some odd joke.
If they had allowed a wheelchair, she probably would have used it some of the time - for the long treks, but not in her room. It was not allowed.
What happened is that one day, as she opened the door ( Metal,fireproof heavy), she fell and smashed her hip. The she had to have a wheelchair, which meant she could not return.
There are some licensed small adult homes which are not set up ro handle wheelchair users. They should get a pass. But for an ADA accessible, professionally run assisted living place to ban wheelchairs doesn't make sense.
89
I just came from visiting an old family friend, age 94, in an Assisted Living Facility -- they had just moved her to a locked unit from her old un-locked building, as a kind of "punishment" because she choose to go out for a short walk on a warm sunny day. She uses a wheelchair for this, though she is not wheelchair bound 100% of the time. The new building, which greatly restricts her freedom and ability to have visitors or go outside, has her room at the far end of the top floor, requiring a VERY long walk (or push!) for a 94 year old. I can't believe it was designed this way. She has to go down one long hallway to reach the elevator (which is very slow) and up a floor, then down ANOTHER long hallway to reach her room which is literally the last one on the floor. She has to do this 3 times a day minimum just for meals, let alone any activities (bingo, sing alongs, etc.). It's exhausting and I am terribly worried about her.
37
@Concerned: What you have described is certainly punitive.
15
Contact the ‘Elder Care’ people in your state or the county she is in. Tell them. Hopefully you have them.
17
Unbelievable.
Who would have thought this practice in one of the most liberal states in the Union??
Hope this article and the lawsuit spurs changes to these most ridiculous restrictions.
Perhaps, they can charge more because for emergencies, may be they need more staff to evacuate wheelchair bound folks.
But come on, as the lead says, ban wheelchairs in of all places.....
7
"...in one of the most liberal states in the Union?" I'm sorry, I had to laugh at that one. Despite the popular image of how only those "backwards" "other" states think or act, states like New York or even California are not immune to stupidity or discrimination. It is a conceit to think or believe it. Relevant to this story, political ideology does not seem to be a bar to age discrimination (indeed mocking scorn of "old" people seems more prevalent on the Left) or fear, reasonable or otherwise, of lawsuits from injuries of residents. This is a national issue that transcends one's political ideology.
20
The real interesting part of this story is the part that hasn’t been reported. These same lawyers and “advocate” organizations who are now claiming discrimination are the same people who have been fighting for years to have the poor mentally disabled residents barred from these facilities for the sole reason that they have a mental illness! The hypocrisy is incredible. These “advocates” sued the state of New York, got the Justice Dept and a federal judge (Gaurafus) to side with them saying that assisted living facilities should not provide housing and this level of care to anyone who ever had a diagnosis of mental illness! Have we gone insane? These facilities have been home to thousands of individuals who require the care provided to them and now these “advocates” are getting them all thrown out because the state doesn’t have the backbone to fight back for what is right. This political maneuvering and failed social experiments MUST stop. The citizens of this great state must speak out for what’s right and tell the politicians to ensure that assisted living level of care must continue to be made available ESPECIALLY to the mentally ill who need them the most.
10
name the lawyers and .orgs that are playing both sides please
9
CIAD, Jota Borgmann, Disability Advocates Inc (DAI), Jeff Zucker, Judge Garaufus, Dept of Justice. All misguided. They are removing people with serious mental illness from their facility homes and placing them in taxpayer funded (OMH) private apartments with no supervision or help. Many have ended up back in hospitals and on the street and some died. This is a travesty. Someone ought to “follow the money” for why this is all happening and who is profiting from this stupidity.
2
You don't "act as [someone's] power of attorney." You possess such a power.
8
You are their ‘Attorney In Fact’. Some states say you are their guardian.
1
Many CCRCs think the sight of residents in wheelchairs in independent living will scare away prospective residents.
22
And they are right!
6
True, but they really do so. They scare off potential new clients who are terrified of having to use a wheelchair eventually. And in truth...if a wheelchair patient is not ambulatory on their own, there are greater demands on staff to get them in and out of the chair -- on and off toilets -- into the dining room -- to activities. Most Assisted Living facilities are terribly understaffed, which is very odd considering they pay $9 to $12 an hour for the workers -- about as much as Walmart cashiers make for a much harder job.
17
THis is also a problem in Virginia. My wheelchair bound sister-in-law, when she investigated assisted living residences, was told she wasn't eligible to live in any of those she checked because, and only because, of the wheelchair, in spite of the fact that she could walk to a certain extent. It's shameful!
14
"But VillageCare refused to readmit her, saying she needed assistance with activities of daily living, including “locomotion.”"
If an "assisted living facility" does not provide assistance with daily living activities (ADL's) , then how could it possibly be described as such?
Wheelchairs and walkers are the reality of the typical assisted living residents life.
Residents who need less care are more profitable.
29
I agree, but there is no official definition of "Assisted Living". I've been in facilities that were more like independent apartments that served meals, did housekeeping and had some entertainment. I've been in others that were close to Dementia Care units.
Some facilities will help residents with toileting -- toileting and incontinence being THE No. 1 reason people end up in care centers -- but others have told me flat out "if your senior cannot toilet themselves, we cannot admit them". And one said "we will help them in and of the bathroom, on and off the toilet...but we will not WIPE." Go figure that out.
12
The facility says my brother needs his rollator. If he leaves his room without it, the first staff to see him, gives him that look Mom used to when he did something he wasn’t supposed to. Then he turns around & goes to get it, with the staff member close at hand. Reminding him they wouldn’t have t follow him if he didn’t ‘forget’ his rollator. Forget my aching fanny. He’s just acting like a 4 year old.
1
We need a much better understanding of assisted living facilities, and more regulations. Many residents will ultimately leave for nursing homes, but only after significant financial resources have been depleted. That puts a burden on Medicaid. Nursing homes ARE subject to regulation and do have to keep residents.
9
Assisted Living homes are fairly new historically. They fill in a "gap" between an ordinary senior apartment (55+) or independent living -- and a skilled nursing home or dementia care unit. They are not really regulated as far as I can see, and there is no official designation of what makes a place "Assisted Living". Any facility can set their own standards. The charges can vary dramatically even in the same region.
I had to put an aunt with early stage dementia into Assisted Living. The facility had many problems IMHO, but it was very close to my home so I could visit often and monitor her care. I was hoping that being in a senior building with other ladies her own age would give my aunt -- who had been isolated with increasing age & medical issues -- companionship and friends. But instead...I came to realize that most residents were so far gone with dementia they could not interact in any meaningful way. The few residents who had all or most of their faculties felt very isolated and lonely.
One thing younger people fail to see is that usually entering Assisted Living means an complete end to your life an independent adult. There is never any 'going back" or leaving because you don't like it. You are stuck, usually forever.
22
My brother lives in the “Memory Unit” with every stage of Dementia there. One way to see how the residents will be treated is to see what’s on their van. Where he is, it has the name of the facility which is named a ‘Club’. The other new one near by is a billboard for the place. With the name, the name of the units (Memory Care) prominently written. So everytime they go out in it, everyone know. The name of my brothers unit is ‘The Garden’s”. No mention of locked ward, or memory problems. They treat all their residents as human beings. I doubt the other one does & they charge more.
7
After spending a year in a nursing home in Queens, I was well enough to transfer to an assisted living facility. Since I desired to stay in my native borough I elected to visit three ALF's there. At all three locations I was told that I would not be accepted while I was in a wheelchair even though I could transfer by myself and could move pretty quickly in the chair. I was never told that is was a state law or the reason for the exclusion.
After some additional searching by my social worker at the nursing home, I was directed to a facility in Yonkers where there was no problem with my being in a wheelchair. I was told by the admin. that they accommodated people with all levels of mobility. So, what's the truth? Is it a state law or isn't it and, if it is, is this facility in Yonkers disobeying the rules?
55
There is little state law or regulation of Assisted Living homes. The definition is very vague, and can be anything from an independent apartment with some options for personal assistance (*at a hourly rate!) or it can be virtually an dementia unit. And some places mingle residents with a huge range of problems & abilities in one facility. Obviously, it is much easier to care for a resident who is in their right mind, mobile and can toilet themselves.
The greater the level of care needed by aides, the higher the cost to the facility so they aim to do as little as possible. I've seen a lot of benign neglect. Facilities often just do enough to make the place look good, while not giving residents the one-on-one attention they need. That makes the facility look good on tours to prospective families who do not notice the neglect.
A patient in a wheelchair can run the gamut from a mostly independent person who can walk a little, transfer to a toilet and do most self care -- to someone entirely dependent on others for everything from dressing to feeding. Such a patient is very costly, as they require more direct care from the aides. Every facility I have been in, even the very pricey "chandelier" facilities, are chronically short of aides -- which is odd, because the hourly wage is about $9-$12! But that's where they try to hold down costs.
12
Under NYS law they don’t have to accept a wheelchair user and the ones which do accept wheelchairs users require that the person can safely transfer on their own.
5
Paula, thank you for shining a light on this. The director at VillageCare at 46th St. & 10th Ave. has a background in operations management, meaning she's basically a bean-counter.
What is the point of an assisted living facility if a wheelchair is an excluding factor? And why put a person who's hostile to those who need assisted living and use a wheelchair, in charge of an assisted living facility? (BTW, this facility HAD an excellent director prior to the current director.)
I am well aware of the current director's determination to exclude anyone needing a wheelchair from the 46th St & 10th Ave. facility - and that includes her telling people who have ALREADY BEEN LIVING at that facility for years (including wheelchair users who *are* able to transfer!) that they CANNOT return there from rehab. She has a prejudice against wheelchair users, and I find that to be outrageous. "Fair Housing"? NO!
IMO, this director is breaking the law (and certainly the spirit of the law), by consigning people who can live there successfully to a nursing home they don't actually need to be in. This facility's "policy" is wrong both morally and legally. IMO, the director should move on to a job where her prejudices do not cruelly impact human lives in this way.
I'd love to see NY City and NY State investigate this facility from top to bottom, b/c I do not believe it's in compliance with the law.
78
@L, Please go ahead and file a complaint with whatever state/ city agencies are in charge. If you don't know where to start looking, try the State Attorney General's office, or an NYC disability rights group.
I don't know the facts of the case. What I do know is that you know the situation, believe the facility's policy breaks the law, and you're passionate about it. So-- I urge you to go ahead and take the next step that might result in change. It needn't require a long-term energy commitment from you.
Good luck.
18
The point is to force the wheelchair user into a higher level of care for more money. Many facilities own or are owned by chains, and offer all levels of care from independent apartments to skilled nursing care & hospice.
Assisted Living is the second LOWEST cost, and moving up to a skilled nursing home OR AL with higher level of personal care, could easily increase the monthly fee to the resident by 50-100%. So the facility has a HUGE interest in pushing people to the higher care level.
Remember: this is a one way ride. Nobody ever says "gee, I'm feeling better and that physical therapy is working. I think I'll move out of skilled nursing care and into Independent Living!" -- it just doesn't work that way. It's all downhill and all increasing costs.
18
@Diana: Thank you! I myself do not have any legal standing vis-a-vis the person I know who lives at this facility, but I will forward your suggestion to the person who DOES have legal standing in the hope that action - and change for the better! - may occur.
8
I am a wheelchair user due to severe psoriatic arthritis. I have a lift that runs on a track on the ceiling that transports me from bed to chair, toilet, and bathtub. I have had the lift for 21 years, it has been incredibly reliable, and has only been serviced 3-4 times. With it, I can live in my house independently. No reason assisted living places couldn't invest in these for otherwise capable wheelchair users. Or the assisted living wheelchair user could invest in a lift. Currently, none of the assisted living facilities in Staten Island will accept wheelchair users. One of them, Island Shores, would not even allow me to VISIT in a wheelchair. My worst fear, by far, is the thought of being forced to live in a nursing home. That is no life at all.
85
I agree it's my worst fear. Every time I have to visit, I get seriously depressed.
HOWEVER: I don't think it is realistic to have the AL home invest in ceiling tracks in 3 areas of a unit, just for one patient. The lifts work great for some people, but if you are older or weak, you might try to transfer yourself and fall. Then you'd sue the facility. A lot of the restrictions are based on fear of lawsuits.
I have an elderly friend, age 94, just forced to transfer from an unrestricted Assisted Living building where she had lived for almost 6 years (!!!) to a dementia unit, because she'd tried to go outside for a short walk in the beautiful spring sunshine. She's never wandered away, but they were afraid she might do so -- or fall -- so they immediately forced her to move to the next level of care. Now she's surrounded by residents with advanced dementia -- no potential for conversation, card games, friendship -- and a much worse suite, that is a long distance from the common areas and requires an elevator. It would be exhausting misery for anyone in a wheelchair -- even a walker. And the cost for the dementia unit is roughly 50% higher than the regular AL facility next door, though the buildings look similar.
It's all about charging the most money and profiting off patients. Frankly: the entire elder care industry is about vacuuming up the entire financial assets of seniors in their last years.
21
Currently trying to find a place for my mother, who has been having balance issues. Her health is very good except for falling and sometimes breaking a bone.
She's too healthy for a nursing home; she's not quite mobile enough for assisted living. Adding insult to injury, she's applying for Medicaid, which is complicated enough (because she has too much in her combined assets to qualify, but too little to private-pay.)
The lawyer alone costs over $15k and the application process has taken a year already. Meanwhile, she's been in/out of the hospital and rehab, and those bills are piling up. We still cover the rent for her apartment in the meantime so she doesn't become homeless.
One assisted living agreed that she could move in, paying privately for a few months until Medicaid kicks in. But I'm not so sure what will happen when her private money runs out and she's 100% on Medicaid, or becomes less mobile. Reading these stories has me even more concerned!
30
Unfortunately, I could have saved you the $15,000. It's too late for a trust to hide her assets now. That must be done 5 years in advance and who can plan things that accurately?
The only thing to do is move your mom into a regular facility -- use up all of her money -- and then hope they let her stay on as Medicaid patient. They typically will NOT promise you this in advance. Some facilities will make exceptions for long-time residents who are very old and will clearly die soon, but mostly the private-pay facilities are much nicer, cleaner and have more staff than the Medicaid facilities.
Private pay means better food and more activities, too -- as well as a location in a "nice area" vs. remote rural or inner city slum.
And for most people, private pay can get you a private suite -- even a small 1 bedroom apartment with a kitchen and living area and private bathroom. But Medicaid will only pay for a SHARED room, like a dorm room and typically with shared bathrooms.
You need to check out both the regular and Medicaid facilities in your area, and pick the least objectionable ones. The chances are, when the money runs out -- your mom will have to move.
13
When my brother was in the hospital we got no help finding a place for him. They would say, ‘he can go home’. Nope home is condemned. Then they started on us, ‘you can take him home to live with you.’ Nope we have a small apartment & do not have the option to move. My husband is required to live here, in this apartment (the biggest they have), it is not handicapped accessible (I use a wheelchair outside, which is ‘1/2 a flight up, out down a BIG step. Hubby lugs the chair out & wheels me to the car’). Only when they believed us, were they forthcoming about places in the area. So paying her rent even while in hospital & rehab, might not be helping you. In NH, they can’t discharge an elderly person who has no safe place to go to. Like him, no house, no sibling to take him in. Social workers help more when the alternative is that the patient never leaves the facility.
7
There are assisted living places which will not take anyone who uses a walker, let alone a wheelchair. And never mind the abundane of senior housing options (non-assisted living) which do not have elevators. They're basically two-story and above apartment buildings which have been transformed into somewhat affordable "independent" senior apartments. They don't care that many seniors cannot climb stairs and don't have anyone to help carry groceries up to the top floor, let alone using a cane, walker, or heaven forbid a wheelchair.
16
I've personally never seen Assisted Living facilities WITHOUT elevators -- if you can walk up two flights of stairs, I am not sure how you'd qualify as "needing help with basic activities of everyday living".
I think you are talking about Independent Living or simply senior apartments (sometimes called "55+"). They are not regulated, and each facility can set any standard they wish.
Often such places are connected to Assisted Living or dementia care units, and they lure people in with chandelier buildings or activities, knowing this is a downhill ride with no way off -- once you move in, they can force you to move to higher levels of care if you get ill or injured or just older.
10
Being readmitted to a private-pay assisted living after a rehab stay should be based on resident safety. It can also be based on staffing or whether there is a waiting list.
Due to the vague rules that are biased in favor of the faculty (read the fine print carefully, folks), if they need you to pay their bills, you will be asked to pay for more care and welcomed back.
If they don't have the staff to cover residents with greater needs, find you or your family tiresome, or can easily replace you with another resident, you may not be allowed to return. And it's all very legal.
Jane Doe's brother might want to consider taking all that money for private NH services and getting her into independent living with private care and homecare physical therapy.
13
They are (mostly) private for-pay facilities and they set their own rules. Below the level of skilled nursing care, there is very little intervention from the state and not even a clear, common definition of terms like "ASSISTED Living" (vs. Independent Living). Facilities using the same designations may offer very different levels of care.
They are looking to make money, and the most money comes from a patient who does not demand too much attention. Best of all, someone with plenty of money in the bank but not much family (or neglectful family or out of town), so they rarely intervene.
Very few residents get regular visitors, even people with adult children in the same city -- day after day. Oh people show up on Christmas or Thanksgiving, but not much in between. So the facilities can cut corners and never give residents the one-on-one attention or entertainment promised in the fancy brochures (that make them look like spas or resorts).
Your suggestion for Jane Doe might be workable if you are wealthy. Unfortunately the greatest cost is for individual caretakers -- licensed, bonded home health aides or attendants bill at $25 an hour and up today. To have 24/7 care would cost about $200,000 a year. To just have someone during the day would be about $100,000 a year. That's for one attendant (or a rotating series of one at a time) and ON TOP OF any facility fees. If you have to do THAT....you might as well not leave your OWN home in the first place.
13
You’re better off not leaving your home or, selling the house and buying a condo and hiring aides. Private pay facilities will eat up your assets very quickly.
12
The place my brother is in told us up front that if he has to go to the hospital, if we want him to come back, we must keep paying for his room. HIs LTCI told us, in that case the payments would stop from them. He must pay for those days/weeks/months. So remember to have money, not in long term investments, investments, or anything but cash in the bank. You will want to keep paying, they can’t get rid of you so easily if you do. I hope.
5
The fundamental problems in New York are an inert NYS Dept. of Health and a recent history of Governors who simply didn't care. Very different now from Governors Hugh Carey and Mario Cuomo who both cared about people of all ages with disabilities.
20
Why??? Because GENERALLY, those in wheelchairs require more staff assistance, and therefore more costs. AND, those in wheelchairs as less likely to be able to afford the highest rates, especially long term. Absolutely discrimination, towards the chair users and those perceived to have less money. It's ALL about the profits.
68
It's very true wheelchair users need more care -- for bathing, dressing, toileting.
But it makes no sense to say "wheelchair users are less likely to be able to afford the rates". There is no correlation AT ALL between how frail or disabled you get in old age and how rich you are. You can be VERY rich and end up in a nursing home -- you can be VERY poor and somehow keep your cognitive abilities and manage to live independently in your own home.
ANY Assisted Living or skilled nursing care is crazy insane expensive. I used to complain to my aunt's Assisted Living facility management -- mostly about the food, which was awful high school cafeteria type stuff -- that for what they charged (about $1200 a week at the time), my aunt could have taken a luxury Caribbean cruise every week and eaten lobster and shrimp. And still had housekeeping, entertainment and people around in case of emergencies.
25
In San Francisco the assisted living businesses charge $8K a month with extras; the care is marginal in most cases anyway.
I went to an Alzheimer's education support meeting almost full of children who took up all the question time asking a lawyer about how could they get grandma's house because her house ownership would prevent her from getting the Medicaid [Medi-cal] placement aid. which is limited to having less than $2K total assets. .. these middle class kids were told to hide grandma's rings too.. phew
48
You CAN hide assets, but it requires planning over 5 years in advance and that means while the senior is still OK and in their right mind -- they have to be willing to give up all control of their finances. You'd have to have adult children who were absolutely honest and trustworthy -- and not everyone is. I know lots of cases where adult children pilfered from their own parents or were trying to keep the assets from other siblings (let alone the nursing home).
Welfare programs like Medicaid or MediCal were never designed so that affluent families could keep money, houses etc. and make the state (TAXPAYERS) pick up their elderly parents nursing home costs. This is a huge, serious problem.
It is true that Assisted Living costs vary around the country, and can be as high as $10,000 in some places and as low as $1800 in others. And cost may not guarantee good care. Families are often fooled by fancy brochures or "chandelier" facilities that LOOK like resorts -- but you can get bad or neglectful care even in fancy places. Ratio of staff to residents is more important, but rarely discussed and hard to actually see.
16
As long as the DOH/PHHPC continue to certify the often predatory and soulless owner/operators of these for-profit assisted living residences...the die is cast.
The cruelty to the disabled and vulnerable elderly is abetted by our poor NY State government stewards. Too many of our legislators -and the man in charge-Governor Cuomo- are complicit. What has been going on is nothing less than state sponsored human rights violations each & every time the DOH/PHHPC give the same assisted living facility consortia 'operators' another certification.
This wheelchair issue as well as so many other shameful assaults on the most fragile in our city and state are perpetuated by unconscionable government inertia (and the long term care facility lobby groups-Leading Age for example- that fund the Guv's & the AWOL lawmakers' reelection campaigns to keep it that way!)
45
I was in and out of wheelchairs for several years in my 30s until I found the surgery I needed to get better. During this period I could take care of myself, and I was working full time, traveling for work, and caring for two young children. Luckily I could afford help and a condo with an elevator. If I had been a bit poorer, then I would have been thrown into this crazy system. Would they have put my whole family into a facility? Taken away my children? Being in a wheelchair doesn't mean that you need a full-time nurse and are ready to be warehoused until you die. It just means you can't walk very far. And it can happen to anyone, any time.
168
I assure you that in your 30s, it is very rare to end up in Assisted Living. I've only seen this a very few times, and it was typically someone who had a permanent disability like MS. And when it happened, it was unbearably sad because that young person was stuck in Assisted Living with 98% of the residents being elderly ladies, many with early stage dementia. That's a horrible way for a 35 year old to have to live out their lives, even if they qualify for full Medicaid.
Don't confuse Assisted Living with welfare housing. There is welfare housing (Section 8) for the disabled, in elevator buildings, but it is NOT Assisted Living. I know some people in just such facilities. You have to be able to do your own self care, bathing and food prep. They do not provide these things, which is why they are NOT Assisted Living. All Assisted Living facilities provide meals and housekeeping.
8
As a wheelchair user I am absolutely used to this. You know what else are inaccessible? Gynecological tables. Examination tables. Medical scales. Eye examination posters set too high. X-ray, CT, MRI etc. changing rooms. X-ray, CT and MRI tables. Most domestic violence shelters. The witness stand in courtrooms. You will be lucky if you can see over the reception counter at the doctor.
You live in a different world when you are a wheelchair user. A world where services are inaccessible to those who need the most. Your pendulum has swung too far. It is ironic, but when you consider the deep ableism in our society it makes perfect sense.
209
My mother was in a very nice and very expensive independent living facility in Massachusetts. After she broke her leg and was in a wheelchair for a while we were told she could not eat in the main dining room if she was in a wheelchair. Instead, she would have to eat in a very small, out of view dining room with others who were in wheelchairs. One of the dining room supervisors actually told me right out that wheelchairs in the dining room was “not the image they wanted to project” to potential residents who might be touring the facility. As an RN myself, I was very upset about this, and spoke to administrators there, who would not budge. I also called the ADA in Washington, DC to discuss and was told since it was a private facility, they could do whatever they wanted in terms of restrictions. It seems to me if you are going to serve the elderly, you have to be flexible in terms of their needs. And don’t make people go to a higher level of care, if they are only going to need assistance for a short period of time.
230
You write about a practice which is common to most CCRCs, that is, not to allow wheelchairs in the main dining room. If a resident cannot walk in, then he or she must dine in the nursing facility. One of the sadder aspects of this rule is to reveal that most residents who are still healthy and independent are terrified of finishing their lives in the health care unit; managers know this and try to keep the sick residents hidden. They also forbid prospective residents touring the facility from visiting this health-care unit beyond a reception area.
49
@CZX: CCRCs are the worst in my opinion -- they charge obscene amounts of money upfront, typically locking the senior in forever. They promise continuing care regardless of cost, but they often reneg on this. And they hide the disabled from tours. I just toured such a place, and they prominently took us to see the gorgeous new condos (for younger, healthy seniors) and fancy apartments with pools and workout rooms -- but we were not permitted to tour the Assisted Living center.
29
This is absolutely true. These are not government run facilities. They are private facilities -- the rules vary from place to place -- but nearly all of them are trying to showcase the facility to a constant stream of new potential patients and their families. The brochures all show delighted, happy seniors who look about age 60 and vital -- but reality is always very different. The average age is over 80, and most people have some disability. But visiting seniors and families do not wish to see this and may be terrified of such decline. They often want to think "this is temporary" or "I'll move back home once I'm a bit stronger". But this is an illusion. It is a one-way ride, all down hill.
Wheelchairs especially terrify people because you need so much more care, and the facility owners are keenly aware of it -- both for advertising AND for their own bottom line. They want low maintenance seniors, who are quiet and do not complain. They want to employ as little staff as possible.
My aunt lived in an Assisted Living facility with five "cottages". Each cottage held 24 seniors on two floors. Each building has TWO (!!!) aides on rotating schedules to do all the resident care, serve & clean up meals, help with bathing and toileting. Housekeeping was separate as was laundry. But patient care for TWENTY FOUR SENIORS, many with disabilities or dementia, were cared for by TWO workers at a time. That made mealtimes glacially slow and good luck getting help if you needed it.
27
I have used a wheelchair at times in my life due to chronic fatigue and vertigo issues. At no time was I completely dependent on the wheelchair, but it enabled me to do far more safely than I could have possibly have done deprived of it.
It astounds me that any facility would seek to evict a resident for wheelchair use.
77
Much important information is missing from this article. First, in order to legally call a facility "assisted living" they need to secure a license from the state. Which means they must adhere to NY State requirements so they can continue to market themselves as such. There ARE very, very similar facilities that call themselves "independent living." There are NO issues with residents who need to get around by wheelchair all the time, even if they need assistance getting into and out of a wheelchair.
I had an elderly relative who went from living by herself (until she got into her 90s) to an "assisted living" facility, then, on the danger of her being asked to leave as her physical condition deteriorated, we moved her to an independent living facility, where the wheelchair was a non-issue. As both places were remarkably similar in ALL facilities and services, if we had known, we would have gone for "independent living" in the first place.
66
Remarkable, but absolutely true
8
I cannot speak for New York State, but in my own state, there is no legal definition of "Assisted Living". You can have facilities that look pretty similar and offer very different levels of care at very different prices. You can pay as little as $2700 a month or as much as $8500 a month. (This is the Rustbelt midwest.)
Some Assisted Living is really early stage dementia care, but labeled "Assisted Living" so that seniors & their families do not balk at putting them there. Others are more like Independent Living.
There is no definition of Independent Living either, and costs there can vary a lot. They can be real apartments with kitchens or just a bedroom. While all Assisted Living I have seen provides 3 meals a day and housekeeping....Independent Living may offer fewer meals or no meals at all. Some have no dining room! Some are merely apartments for those over 55.
Independent Living places have younger residents, and are generally nicer amenities, but if you have illness or disability or need more care....they can and DO boot you out -- or force you to move to their next door Assisted Living or dementia care facilities. Independent Living facilities will not keep on residents who clearly show dementia or are an insurance risk (fires in the kitchen and so on).
10
This is about market segmentation and Medicare/Medicaid - like separating various amounts of cream from milk....
It's also about using wheelchairs as a proxy for inability to get up and down without assistance - such inability would be a valid marker that someone needs to be in skilled nursing rather than assisted living.
13
Karl, simply using a wheelchair is NOT an indication that someone needs skilled nursing care! Why would you think that? Wheelchair users are just like everyone else. They are a diverse population of people with a range of health care needs. Some chair users live independently and need no assistance, while others need help with all activities of daily living. It is factually wrong to state that all chair users need a specific type of care.
Also, the article indicates that this issue (wheelchair users in assisted living facilities) is somehow a “complicated,” due to a variety of state and federal laws and policies. I completely disagree. The law is quite clear. If an agency/facility receives state or federal money, such as Medicaid or Medicare, then the facility must follow federal law. In this case, it means that these facilities must be accessible (or make them accessible over time as maintenance/remodeling occurs), and they must follow the fair housing laws (as pointed out in the article). It is a bit more complex if the facility does not accept state or federal dollars. However, other anti-discrimination laws cover these situations.
The bottom line is that the law does not allow facilities to deny services to wheelchair users for simply using a wheelchair. Maybe you think that this issue does not apply to you or impact your life in any way. But, remember, anyone can become disabled at any time. This is an issue for all of us.
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So Senator Tammy Duckworth requires skilled nursing care? Just stunning the simple-minded ignorance that props up and furthers discrimination. Why don't you view some videos of Duckworth in action in the Senate and get back to us on valid markers of skilled nursing needs.
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They may be using wheelchairs as a proxy for inability to make transfers without assistance, but even folks who cannot do that are not necessarily in need of skilled nursing. After his stroke and the breaking of his femur, my father used a wheelchair for the rest of his life. He was able to assist with transfers but not make them himself, and at the end he was even on a feeding tube. And yet his needs were met in a small adult home (3-5 residents) with full time care but no skilled nursing. And he did fine there.
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Yep. At least one assisted living I know here in Manhattan (that takes Medicaid) does not take new admits with wheelchairs. They won't take clients who need *too much* help. The thing is - they fill such a great niche here (affordable assisted living) that people don't really even think to complain about it. (Or at least I never did....I'm just glad they can take any of my other clients who desperately need a place to go!)
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There is a huge and growing body of older seniors with multiple health problems, who cannot live on their own. They either need family to provide things like meals, laundry, housecleaning and rides to the doctor -- OR they need to live in a facility. There are different levels of care as well as different costs, depending on how much care you require.
By the time a family needs to put a loved one in a care facility....they are at their wits end and desperate. I put an elderly aunt into Assisted Living in 2013, because she had used up all of her Medicare days in rehab after multiple surgeries. The nursing rehab -- a 5 star facility! -- literally threw her out, in the lobby with her possessions in a black plastic garbage bag. I called every Assisted Living facility in my area until I miraculously found her a room that night.
Most of these decisions are not carefully planned year or months in preparation, but done in a panic when the family realizes that "mom or dad" set the kitchen on fire trying to make toast, or fell and broke a hip.
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There is a complicated spectrum of disabilities and limitations that affect older adults including ambulation, sensory limitations, personal hygiene, bladder and bowel function, cognition, etc. Establishing "reasonable" limitations that can exclude an individual from a care facility should be based on staff qualifications and physical accommodations like ramps, rails, elevators, etc. Also, many care facilities allow in outside care providers to supplement their own services at the resident's expense.
Without clearer guidelines, this wheelchair limitation sounds like a way to control the cost of providing care, using dubious criteria to exclude certain potential residents.
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I took an online course by Johns Hopkins, for credit, that discussed just these senior issues, including dementia and AL/Nursing home care.
Their recommendation was to find the best, most costly possible care facility for your loved one -- and THEN at your own expense, a 24/7 health aide (or rotating shifts of such) to be at their side to monitor problems and ensure they are fed, entertained and all medical issues attended to promptly.
Unfortunately, such a facility would cost at least $9000 a month (and up to $18,000 a month in some costly areas) and ON TOP OF THAT, the health aide would bill $25 an hour or $600 a day (!!!) or ANOTHER $18,000 a month -- or $216,000 a year.
That was their idea of ideal, optimum care for a senior with multiple health issues including early stage dementia. DO THE MATH. Maybe Warren Buffet could afford this. Most families would be wiped out in six months and what about the senior's SPOUSE? what happens to THEM?
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