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An unfortunate practice has been tolerated for too long at some continuing care retirement communities (CCRs). CCRs provide housing and services for seniors, often with a wide range of needs. Residents who are fully independent may be in one part of the CCR, while residents who are disabled and need assistance may live in the assisted living wing. Often over time, a resident will transfer from the independent to the assisted living wing.

But many CCRs needlessly go way beyond separating the housing units for independent and disabled seniors. They completely separate independent seniors from those who need assistance, sometimes actively preventing contact between these groups. In these facilities, the independent and assisted living seniors eat in different facilities and participate in completely different social activities. They may never see each other.

Many of the facilities claim that health needs dictate this segregation. But the need for this level of segregation is seldom justified on health or clinical grounds. Some have alleged that one reason for this segregation is marketing. The housing communities want to portray the seniors in their independent living facility as active and vigorous. And seeing disabled elders in the dining room may force the non disabled to confront their fear of aging and disability.

It is bad enough that many facilities minimize interaction and socialization between independent and assisted living seniors. But particularly egregious is what happens to seniors who start on the independent side of the community, but then become frailer and move to the assisted living side. They are no longer permitted to dine in the “independent living” dining room and they are no longer permitted to participate in the independent living social activities. I have heard of situations in which the grounds of the independent living wing are practically off limits to those in the assisted living wing.

So at the same time an older person is trying to cope and adapt to new needs for assistance, they are ripped away from their social networks and friends–and sometimes even their spouses.

In the community my Grandmother lived during the last 5 years of her life, the independent residents would talk about neighbors who had gone over to the “other side”. I was always really proud that my Grandmother visited her friends on the assisted living side. She even organized a weekly bridge game in the assisted living wing. Her loyalty to her friends was one of many things that made her special.

But it should have been much easier. There should have never been an “other side.” There was no medical reason why the move to assisted living should necessitate this degree of social separation. Her friends should have still had a seat at their old dining table and at their favorite bridge game.

But recently, some courageous seniors have begun to fight back. As reported by Paula Span in a series of posts on the New York Times New Old Age Blog (here and here) an upscale retirement community told residents in the assisted living wing that they no longer had a seat at the table in the independent living dining room. Many had eaten in this dining room for years. But the facility then banned assisted living residents from the independent living dining room. In some cases, assisted living residents could no longer share dinner with their independent living spouses. Assisted living residents were also banned from social activities in the independent living facility.

But these seniors reminded us that just because you need some help does not mean you are a pushover. They and their families fought back. They protested to board members and hired an elder care attorney. And by calling Paula Span, they shined a national spotlight on their plight. In the end, the retirement community did the right thing. Residents can once again eat in any dining room. 86 year old Dorothy Evans summed it up best: “Don’t mess with us.” Bravo!

So we should all give a big thank you to these seniors who have won an important victory for the rights of persons in assisted living. And thanks to Paula Span for telling this story.

For now, this is just a local victory, but it will hopefully spur a national movement.

by: Ken Covinsky (@geri_doc)

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