Last summer Paula Span wrote a piece in the New York Times about a retirement home in Virginia that decided to make the dining area and other public spaces available only to residents who lived in independent living. After residents and families protested and the Justice Department sued under the Fair Housing Act, Harbor’s Edge finally settled. They paid compensation, a penalty, and are required to make reasonable accommodations so that all residents can enjoy what the community has to offer. They settled because they didn’t have deep enough pockets to fight the suit, not because they have changed their position. And they’re not unique in this type of practice.
Harbor’s Edge is a continuing care retirement community (CCRC). That means they have housing for people who don’t need help (independent living), housing for those who need some level of help with things like dressing, bathing, and those types of activities (assisted living), and housing for those who need skilled nursing care (nursing home). This continuum of care is what makes CCRCs attractive. As need for care increases, residents can add services within the same community, sometimes without even having to move to a different apartment within the community. It also allows couples to remain together even when one person needs more care than the other.
Segregating people based on what part of the community they live in or their level of functioning means that couples with different care needs can’t go to meals in the dining room or attend events together. It limits social interaction and threatens residents’ autonomy – two of the things that people move into a CCRC to protect.
So why would anyone think that such a policy is a good idea?
Because long-term care in the U.S. is less about care and more about business.
CCRCs and long-term facilities in general are businesses and decisions about residents lives have to be made in that context. Whether they are for- or non-profit, they have an image to maintain and a particular clientele they need to attract. A dining hall full of people in wheelchairs doesn’t look good on a brochure or a website. Decisions about when and where residents move within the community (from independent to assisted living to nursing care) are the facility’s to make and are typically specified as such in residents’ contracts. Such decisions are based on an assessment of the resident’s needs and in the best circumstances are made by an interdisciplinary team of health professionals in consultation with the resident. But it’s likely that the current census and space needs of the facility come into play as well. For the resident, such moves are intertwined with loss of autonomy, privacy and personal space. For the CCRC, it intersects with costs and keeping rooms filled.
Our current system of care requires people to cobble together financing from private sources (like long-term care insurance), government funding, and their own pockets. They have to exhaust these sources before they qualify for Medicaid coverage and that coverage varies by state. This system unnecessarily pits resident and business interests against one another around care decisions and leads to policies like that at Harbor’s Edge.
For an excellent ethnographic study of resident perceptions and experiences of transitions within a CCRC see the work of Tetyana P. Shippee.
What experiences have you had with long-term care, both positive and negative?
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