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The CCRC concept is an ageist nightmare -- and it’s not just the name

Maybe you have Ann Clinton stuck in your mind too.  This woman and her husband spent $351,424 plus $4600 per month for the 'security' of having access to the continuing care of a CCRC. The 'continuing' of the CCRC was in one direction – she discovered that returning in a motorized wheelchair from the nursing home section to the independent living bingo game engendered big protest – from the other residents as well as management. You may have seen this yourself – people putting wheelchairs and walkers at a dining room door and limping in so that they could eat with friends in the 'independent living' dining room. These are well-documented -- if not well-understood -- policies. The message, perhaps constructed by CCRC marketing?  Independent living residents don’t wish to see people who are not as 'independent' -- or at least who don’t appear as independent as themselves.

When the going gets tough – the tough change the name. CCRCs have offered well-defined services -- even though the entrance financial mechanics vary widely – no doubt as a result of the economic status and available cash within the prospective market. Residents have been moving in who are older and frailer. IL residents start out independent (perhaps), but may add private duty home care services, bumping up monthly expenditures to staggering amounts, in some places not discounted for couples. Perhaps you have also read about the effort to change the CCRC moniker to something more modern. No doubt there is great industry frustration with these average move-in ages in the mid-80s, resulting in a shorter duration stay due to the resident's demise or not discussed much, running out of money.

The industry seems to wait and see.  Virtual assisted living – once discussed at a LeadingAge event by Evangelical Homes of Michigan exec Steve Hopkins -- didn’t seem to catch on – perhaps due to the large investment in brick-and-mortar, and even10% or higher vacancy rates for Independent Living units. What is taking the place of Independent Living?  For some younger folks today, 55+ communities are seeing growth.  At the other end of the age/health spectrum, senior housing firms are investing in memory care construction -- and that segment is growing. While senior housing overall growth seems relatively stagnant, the home care industry is booming, some of its workers supplementing inadequate staffing levels for frailer residents wishing to remain in independent living units.

Who talks about the marketing elephants in the room? Many issues deserve more public discussion (thank you, Paula Span and the New York Times). 1) The unsustainable private pay cost of assisted living -- more than $50,000 per year in some Northeast states.  2) The average assets and incomes of older adults are declining and cannot last through multiple years residing in a CCRC. 3)  Life expectancy averages for women who reach 65 seem to be rising sharply -- up to and beyond 88 years. Does it surprise anyone that move-in is deferred until the mid-80’s -- or even when dementia sets in? Perhaps average ages will rise again in coming years. Independent living residents may walk unaided into the dining room or into their apartment/home door, but how long  will it be before they need assistance? Marketers may disclose policies, but do they warn about practices that could sharply change the resident’s future years – where they will encounter segregated dining rooms, restrictions on roaming around a campus, and other, perhaps costly and painful lifestyle changes, beyond being able to play bingo?

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Comments

I have seen this a lot over the years. There are exciting new options available - like the Greenhouses and the Village concept. People need to be aware of what is and what can be before they lose everything.

Patricia Faust

Corporate Wellness Director at Brain Health Center, Inc.

 

I've visited CCRCs and have friends who live in them. Reading the NYT article, it doesn't surprise me that not only facilities, but also residents can get very petty on who's invited to activities, trying to block a fellow resident who now is in skilled nursing. Seems like some education is needed. Better yet, a better housing model is needed.

Thanks, Laurie, I appreciate your thought provoking post.

With the vast majority of older adults (even those 80+) living in community rather than institutional settings, the emphasis must be on successful aging in private homes, multifamily housing, and multigenerational housing (while developing new options). That means designing our homes & communities to meet the needs of the lifespan and creating policies which support the services which keep our seniors safely at home while successfully employing service providers.

Three great resources:
The American Planning Association's Aging in Community Policy Guide https://www.planning.org/policy/guides/pdf/agingincommunity.pdf
Stanford Longevity Center's New Realities of an Older America http://longevity3.stanford.edu/wp-content/uploads/2013/01/New-Realities-of-an-Older-America.pdf
Harvard JCHS's Housing Americas Older Adults http://www.jchs.harvard.edu/research/housing_americas_older_adults

At AgeTech West, I started off a panel I moderated by asking people to raise their hand if they managed some type of assisted living institution. Of course, this was a Leading Age event and most of the room of 400 raised their hands.

Then I asked - how many of you with your hands raised look forward to the day that you live in your facility? About a dozen hands remained raised. And that says it all.
 

Laurie,

As you know, I have long been a huge fan of your work but I think your recent blog, "The CCRC concept is an ageist nightmare -- and it’s not just the name" is a bit lopsided. As someone who has spent the last 25 years of my career working with seniors and the dedicated staff of continuing care communities across the country, I have seen thousands that have benefited from this incredible product. I also saw my parents live some wonderful years at Erickson's Charlestown retirement community. Their community helped them age and die with dignity and grace. I should point out that they moved in when they were still relatively young and healthy. Funny thing happened, they didn't just "bare" their time there, they actually enjoyed it. I think this article by Frederick Funkul sums it up very nicely: http://www.washingtonpost.com/news/local/wp/2015/03/05/aging-in-place-co.... It's all about choice. Yes, there are some examples of bad human behavior, including ageism, at some of the communities. But I would argue far less than in the world at large. I don't think anyone ever wakes up and goes, "Yahoo! Today's the day I am going to move to a CCRC!" Facing one's own mortality is never fun and to a large degree, that what this move is all about. But I think you are overlooking perhaps the most important element of CCRCs, no, it's not the services, amenities, and health care. Humans are by design social animals ... and CCRCs make being truly social much, much, easier. If you look at the 7 dimensions of wellness, as laid out by the International Council of Active Aging, CCRCs are uniquely qualified to help seniors achieve all 7 dimensions. As my Dad said when my parents decided to move in to their CCRC, "It's the right place, for the right time." Can CCRCs be improved? Absolutely. But let's not throw the baby out with the bath water. I think the thousands of smart, able-minded and healthy, active, independent planners who make this move every year have made an excellent decision. Warmest regards, Tom

PS I loved your article on the new innovations in hearing technology. I even went so far as to buy the SoundHawk which I absolutely love! In 2007, I suffered from sudden sensorineural hearing loss in my right ear. My standard (and very expensive) hearing aid never did much for me BUT this new tool rocks! Particularly good for crowded restaurants and for TV viewing. I highly recommend it.

Thank you for the article about the age-ist nightmare that is the Continuing Care Retirement Community model of senior living and services. Friends and loved ones reside in a CCRC that practices the systematic age-ism and discrimination described below. Changing the name from CCRC to something else is not sufficient to erase the stench of age-ism. (As Shakespeare said, 'A rose by any other name....' ) I would note that the very real phenomenon of "transfer trauma" makes it unwise for some elders to relocate AGAIN after they discover how poorly "reality" matches the "expectation" of CCRC living.

FYI this CCRC's licensed units are in a section called the "health center."

1) No health center resident has an internal mail slot, thus CCRC residents who occupy health center units are instantly excluded from what might have become a years-long familiar and social exchange of notices, notes, cards, committee minutes, and personal communications with neighbors in the retirement community.

2) The systematic exclusion of health center residents from having internal mail slots is exacerbated by the fact that nothing in the mailroom informs independent living residents of any other means to continue to include a health center resident in the ordinary flow of communication that is conducted through internal mail slots.

3) CCRC residents pay for transportation as part of the monthly fee. Despite Federal and State regulations protecting the rights of long term care residents to receive care and services consistent with individualized assessments and care plans, the CCRC prohibits health center residents from using the transportation they are paying for unless they also pay for an aide for a minimum of 3 or 4 hours. This even applies to residents who have been assessed as being able to safely use the transportation for a round trip to a physician appointment or a pharmacy. Because the operator receives Federal funds in the form of Medicare reimbursements, it could also be argued that the operator is violating Section 504 of the Civil Rights Act. The operator refuses to adopt a policy of permitting residents to access the transportation consistent with a qualified individualized functional assessment, until a regulatory enforcement action, or court action, requires them to do so. As it is, the transportation "included in the monthly service fee" costs about $120 per trip if a CCRC resident occupies a health center unit. Of course this is not disclosed in advance to depositors.

4) The glossy monthly newsletter and calendar of events is delivered only to independent living residents, keeping health center residents from knowing about clubs, committees, entertainment and other opportunities that they might want to have written into their individualized care plans. Six years after opening, in response to repeated complaints, the CCRC began delivering "a stack" of newsletters to the "health center," but it is still no staff member's job to deliver one to each health center resident or to a legal representative (and the absence of internal mail slots makes it difficult-to-impossible to include health center residents in the individualized distribution of newsletters). It does seem as though this CCRC wants to make sure that independent living residents are able to move through life neither seeing, nor keeping company with, health center residents.

5) The CCRC contract says that all occupants of independent living units AND health center units are members of the "Resident Association." Despite this, the operator provided a set of "Resident Council by-laws" that excludes health center residents from having access to any voting member of the Resident Council. That exclusion remains today, because of the exclusionary bullying practiced voluntarily by the Resident Council members who have the authority to change the by-laws, but who choose, instead, to continue to exclude health center residents from having access to a voting member of the resident council. Because health center residents (and their legal representatives) have no access to a voting member of the CCRC resident council, the resident council has no means to include the health center residents' complaints and questions in each month's list for the provider, requiring (per the by-laws) responses at the following meeting.

6) Residents who use wheelchairs are bullied by residents who do not use wheelchairs. A man who uses a wheelchair, and his wife, took a wheechair-designated spot, and the adjacent chair, to hear a musical performance. Before the entertainment started, the man using the wheelchair, and his wife, were bullied out of the room, with no intervention by staff, by a chorus of "we can't see over him" by residents who had later taken seats behind the spot that was open for the wheelchair.

7) A man who used a physician-ordered power wheelchair was illegally prevented from using it by the State-licensed administrator who told him the power wheelchair would not be permitted in the health center, where the man was having a temporary rehab stay for daily PT and OT after an illness. Medicare paid the facility handsomely for daily skilled therapy that did the man little good, since the licensed administrator prohibited the licensed therapists and the Medicare beneficiary from using the physician-ordered assistive device during daily therapy.

A high-stakes and carefully-rigged Bingo game is, indeed, an apt metaphor for the age-ist practices of CCRC living. My experience on the sidelines of the game have turned me into an activist for CCRC resident rights.

Note this other 2011 case in Virginia, just settled, on the same topic.

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