Being discharged from a nursing facility to a home- or community-based setting seems like a completely positive development — and the media certainly present it that way. These human interest stories tend to focus on improved health and regained independence.
But in reality, these transitions are more complicated. I admire a story that ran Monday on Ohio public radio about a nursing home resident trying to move out of the facility, but I think it also shows how these stories tend to gloss over some of the thornier issues at play here, and perhaps unfairly cement negative perceptions of nursing homes.
The ideastream story focuses on Donna Giron, who moved into a nursing home last spring after a flare-up of Crohn’s disease, and now is physically able to be discharged. Reporter Sarah Jane Tribble is obviously good at her job: In less than a thousand words, she paints a vivid portrait of the intrepid Giron, provides background on the trend toward more Medicaid funding of home- and community-based care, zeroes in on the demonstration projects underway in three states, and describes in detail how Ohio’s demonstration is working (5,400 residents transitioned out of facilities since 2008). But with about only 1,000 words to work with, she also didn’t have the space to flesh out some of the complexities suggested by the details of her story.
For instance: The piece begins with a description of Giron wheeling herself through the nursing home, getting some ice water from an attendant, and waving to friends. But when Tribble asks what Giron’s ideal home would be, Giron begins to weep, saying, “I just want to be in my own home … I just want to live my life normally like most people do.”
The complexity here is that Giron actually seems far from miserable in the nursing home, where she is in good spirits and has friends and supportive caregivers. Her desire to be in a home of her own is of course completely understandable, but she does not have a house to return to; she is seeking a place that she would be able to afford with the help of Ohio’s Home Choice program. The best candidate so far has been a house “with some chipped paint and one broken basement window.” While Giron “fell in love” with it, I couldn’t help but picture a ramshackle structure where she would live far from those friends she made in the nursing home. In other words, there are some tradeoffs to independent living that shouldn’t be dismissed, but stories like this rarely delve into.
And then there’s the fact that Giron lived with her sister prior to her nursing home admission. Now, however, moving back in with her sister is not an option, Tribble reported. She did not say why; the sister might have moved to Timbuktu for all we know. But the implication is that moving back in with her sister would be on the table if circumstances were different; this reliance on family and friends is another aspect of home- and community-based care that deserves more scrutiny.
Moving in with a loved one sounds like a preferable option to nursing home care, but public policies that pressure informal caregivers to provide housing could be “unsustainable.” That’s according to a Health Affairs blog posted Friday by Allison Hoffman of the University of California, Los Angeles School of Law.
Hoffman calls these loved ones “next friends,” which is the legal term for a person who is not a legal guardian but can act in the interests of someone else. She points out that policies meant to increase HCBS are coming at the same time that families are less equipped than ever to provide this type of support, due to geographic dispersal, the need for two wage earners, the rise of single-parent households and other trends. “Next friends” face potentially catastrophic financial repercussions in the form of lost wages and benefits as they reduce working hours or leave their jobs entirely, she emphasizes.
In her ideastream story, Tribble explained how a move to HCBS would help states trim Medicaid spending, and Hoffman too acknowledges that this would occur. But she considers what some of the hidden costs of HCBS would be, describing a hypothetical case of a man who moves in with his daughter after a stroke:
“If his daughter moves him into her home, as Medicaid policies increasingly encourage, his needs could be fully met at the lowest possible public cost. But his daughter may have to reduce working hours or leave a secure job with benefits, threatening her family’s long-term finances and possibly health and wellbeing. Such results, where each generation sacrifices its security for the last one, are simply not sustainable.”
Given that private LTC insurance has never caught on and appears less viable than ever, the solution that Hoffman proposes is not an overreliance on “next friends” but a federal program more like Medicare, which would not kick in only when a person reaches poverty.
Of course, this is a perennial recommendation; some members of the federal long-term care commission proposed it last year, and a recent AARP report card on long-term care emphasized the need for federal action. It does not seem remotely politically viable, but I think Hoffman makes a persuasive case for it. And as a recent piece in the Atlantic points out, it’s even possible that a more robust federal long-term care funding mechanism could support highly innovative care settings that blur the facility and homecare divide, like the “dementia village” in the Netherlands.
As HCBS programs gain steam around the country, I expect we’ll be seeing only more feel-good stories about residents leaving nursing homes. I don’t mean to downplay how meaningful it is for someone to have the maximum level of independence. But I do think that we need to keep the big picture in mind, and remember the pressures being exerted on next friends, even as we might cheer these individual stories. Long-term care advocates should keep beating the drum that home- and community-based care is not a panacea, and that we need payment structures that will allow innovative facility-based care to flourish as well.
Tim Mullaney is McKnight’s Senior Staff Writer. Follow him @TimMullaneyLTC.