It is not often that a resident of an assisted living facility prompts a public dialogue about the nature of residing in an ALF. On July 9, the Washington Post published a provocative article written by Martin Bayne: a 62 years old journalist, buddhist monk and publisher. He lives in an assisted living facility (ALF) due to young-onset Parkinson's disease and his heartfelt narrative of life in an ALF is shocks on many levels. Within hours of its publication, over 430 comments were posted to Bayne's column.
Where he lives, the facility administration and ownership make no effort to mitigate the despair, isolation and loneliness afflicting Mr. Bayne and his fellow residents. In this ALF's dystopia, the residents are "alone together", and the pursuit of profitability is more important to the facility's administration and ownership then addressing resident needs. Early in his residency in one facility, Bayne is reminded by the executives that "this is NOT your home. You just lease an apartment here like everybody else." No one, would confuse this facility with a Green House Project community where elders and staff engage in meaningful relationships built on equality, empowerment, and mutual respect.
Despite the level of impairment of the residents, the facility where Bayne resides does not incorporate universal design and satisfies only the minimum building code requirements for ADA accessibility. Mr. Bayne cruelly lives in a ground floor unit where he has " a beautiful outdoor space -- but my wheelchair is too wide to negotiate the doors, so I can't wheel myself out onto it."
Sorrowfully Bayne writes:
"Most residents show a calm, even peaceful veneer. But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in assisted living. It's the result of months or years of loneliness and isolation. It's also the result of burying our feelings and emotions about being surrounded by many demented and disabled neighbors and by frequent death."
Mr. Bayne does us a great service by authoring this column (which was excerpted from Narrative Matters in the journal Health Affairs). It is important to note that he is one of 1 million Americans live in ALFs (about 10% are Medicaid recipients) and that assisted living is growing at a faster rate then any other form of institutional care. In November of 2011, the U.S. Senate Special Committee on Aging held a hearing on the subject of ensuring quality and oversight in assisted living (here). The hearing's speakers addressed the need for better models of oversight to assure quality of life and consumer choice. With a lack of nationwide regulatory standards (unlike skilled nursing), each state is responsible for promulgating its own regulations for this sector of the elder care industry. In Illinois, ALF regulations that provide for quality assurance and establish standards of care are enforced by the Illinois Department of Public Health, Division of Assisted Living.
Throughout this coming week, I will publish a few videos relating to assisted living. The full text of Mr. Bayen's article as it appeared in the journal Health Affairs can be found here. What is your experience with this model of care? Learn more on Twitter @aginginchicago.