Long-term care is a ‘wasteland of inattention.’ This reporter is helping change that.
(Photo by Hugh Hastings/Getty Images)
Three years ago, when COVID-19 was raging in America’s nursing facilities and killing residents by the thousands, the press reported on case after case of elder care abuse, neglect and almost certain death in nursing homes from the virus. It seemed the media might have been forced to rediscover the once-robust aging beat that so often produced prize-winning journalism in earlier eras. I tested my momentary optimism against Judith Feder, a professor of public policy at Georgetown University, who has studied America’s long-term care system for years. She was not enthusiastic. “Reporters need to look beyond nursing homes,” she told me, and start “looking at a broad financing discussion. Long-term care has been identified as part of the health care system and a particularly underfunded part.” She went on: “There’s a general acceptance that it is still a family’s responsibility to take care of people, and caregivers are not getting a lot of public support.” Feder ended our talk with a question: Why is this topic “such a wasteland of inattention”?
That is an increasingly urgent question given that a portion of the baby boom generation — about 70 million Americans — will need services in the coming years. Some will need more help than others, but if they live long enough, almost everyone will eventually need some help. Yet in recent years, the aging beat has drifted into obscurity at the country’s remaining media outlets. That’s why I was so excited to discover the work of Washington Post reporter Christopher Rowland, a business desk reporter who has recently carved out a niche covering the aging issues. Since April, Rowland has written four compelling stories about serious shortcomings in the country’s care arrangements for its growing elderly population. He has told the powerful narratives through the lens of people who have been snared in our woefully deficient long-term care system, offering a warning to policymakers and families and a challenge to journalists to restore the visibility this important topic once had.
Rowland’s stories are exceptionally clear and interesting; they offer a template for kickstarting the aging beat. “The whole idea of the baby boom generation needing services is a very big story that needs to be covered,” Rowland told me. “I see big systemic problems in long-term care, and the impact is so profound on health and finances, it’s an easy sell to editors. The response has been huge, with enormous traffic.” He pointed to one heartbreaking story about an assisted-living eviction that attracted 4,624 comments, and another about a family struggling to cope with exorbitant costs that exceeded the family income, which attracted 7,343. “People are really hungry for this coverage. It doesn’t matter what your affiliation is, you are going to need an affordable place to live when you are old,” Rowland told me. The lack of affordable living options for seniors is a major theme of his work.
One of those stories published last March carried the ominous headline warning, “Senior care is crushingly expensive. Boomers aren’t ready.” In the story, Rowland chronicles the long-term care journey of 65-year-old Beth Roper as she struggles to pay for her husband’s Alzheimer’s care. He lives in an assisted-living facility, which now costs almost $72,000 a year — far more than her $64,000 salary as a public school librarian. They are a middle-class family left with few options, caught between the proverbial rock and a hard place. As the story points out, nursing home care is too institutional for many seniors, and as I reported last year in this space, home care aides are scarce in many parts of the country, with impossibly long waiting lists almost everywhere for services. “Ultimately it will be a societal crisis. These are the schoolteachers and the firefighters, the working people who take care of all of us who cannot afford the (senior housing) that is being built out there right now,” warned Beth Mace, the chief economist for the National Investment Center for Seniors Housing & Care. Rowland reports stories of families scrambling to secure funding by taking out loans, liquidating real estate, turning to family members for help and resorting to GoFundMe drives — hardly ideal solutions. After chronicling the bleak future for others in need of long-term care, Rowland returns to the predicament of Beth Roper, who found a room for her husband in an assisted living facility for $3,500 a month. Shortly after arriving, the facility determined her husband Doug was at risk of wandering and needed placement in a more costly memory care unit. Like most families confronting such dilemmas, she was surprised to learn there was no safety net for people like Doug. She told Rowland the family had done everything they were supposed to do — save for college, pay off their house, tithe to the church, and pay taxes for more than 70 years of combined work. Yet like so many other families who thought they did the right things, they’ve been cut adrift in old age.
I see big systemic problems in long-term care, and the impact is so profound on health and finances, it’s an easy sell to editors. The response has been huge, with enormous traffic.” Christopher Rowland, The Washington Post
In another story headlined “Assisted-living homes are rejecting Medicaid and evicting seniors,” Rowland recounts the saga of 91-year-old Shirley Holtz, who had dementia, needed a walker to get around and was receiving hospice care in an assisted living facility near Green Bay, Wisconsin. She was covered by Medicaid. But in Holtz’s facility, the Emerald Bay Retirement Community, 15 people including Holtz were evicted from their “homes” in assisted living after the facility would no longer accept payment from Medicaid. It’s “an increasingly common practice,” industry representatives told the Post. Eric Carlson, a lawyer with the advocacy group Justice in Aging, told the Post, “You can’t just flip in and out of these relationships and treat the people as incidental damage.” In this case, Holtz was the incidental damage. She was transferred to another facility where she rapidly declined. Three weeks after moving, she died.
In late May, Rowland wrote a novel piece about seniors who are “flooding homeless shelters that can’t care for them,” examining a vastly underreported aspect of aging and the lack of suitable housing for countless older Americans living on the streets and in shelters. He tells the story of 73-year-old Beatrice Herron, a grandmother and former auto worker who spends most of her time in food lines, seeking shade from the Phoenix heat, and sleeping on a mat in a homeless shelter. She has been repeatedly victimized in the shelter, having her purse and wallet stolen. Rowland points out that many “long-term chronically homeless people are simply aging on the street.” That gives a sad new meaning to “aging in place,” the goal many advocates had promoted for seniors. Elders living in shelters is “in crisis proportions,” says Dennis Culhane, a professor and researcher at the University of Pennsylvania. Rowland noted that the population of homeless seniors 65 and older will double or even triple 2017 levels in some places before peaking around 2030.
That’s reason enough for journalists to start investigating how their own localities plan to provide for this population explosion. It will be an ongoing story for a long time. The trials of the day-to-day existence of elders living in shelters should be a wake-up call for other Americans who could find themselves in a similar predicament one day if the U.S. remains incapable of addressing this crisis. Rowland’s fourth story recapped the consequences of little testing in nursing homes before vaccines became widely available. Citing a study in the New England Journal of Medicine, he reported facilities that tested the most experienced 26% fewer resident deaths than facilities that tested less. Those numbers attest to the failure of care in too many American nursing facilities during the pandemic and serve as a warning for the next medical catastrophe. One interview in his piece stands out. An infection specialist in Illinois told Rowland a core principle of infection prevention is to know what’s out there before it enters your building, but warned such basic rules could not overcome the willful ignorance that some nursing home operators espoused. “If I had somebody telling me they didn’t know what their residents were dying from, because it couldn’t have been COVID because it was fake news, then what do I do with that?”
There’s a general acceptance that it is still a family’s responsibility to take care of people, and caregivers are not getting a lot of public support.” Judith Feder, Georgetown University
Rowland told me he talked to people all over the country reporting these stories. “They are Trump supporters, but are mad at the system and afraid for their finances. They definitely think something needs to change,” he said. “We’re putting a finger on the conundrum of American politics. They don't like what’s happening, but they don't want to pay something like a tax that would fix things.” Those comments reminded me of an interview I had in Copenhagen eight years ago, when I was learning about Danish long-term care, a popular taxpayer funded system that appears to work quite well. Funding comes from the national and municipal governments, with the municipal governments paying most of the bills. The government can adjust services to meet peoples’ needs. While taxes are high, families don’t have to deplete assets to become poor enough to qualify for Medicaid, which is the case in the U.S. A Danish health official told me, “By being a citizen, you have the right to quite good care not based on how much money you have. You pay your share during your working years and the money is there when you need it.” Personal care and nursing home care is free, although people are required to pay a nominal amount for a nursing home stay — that was considered rent, since a person had to pay to live somewhere.
Rowland offered other explanations for Americans’ poor preparedness for old age. “One is people don’t want to think about it, and they don’t save money very well. The societal attitude is that nothing bad will happen.” He also mentioned that a lot of people think Medicare covers these costs, which is a “misimpression and the lights have not gone on for a lot of people. People don’t think they will ever get sick, or that their kids will care for them.” Medicare covers some skilled nursing care in certain circumstances, but in general it does not pay for long-term care. A study published two years ago by the Center for Retirement Research at Boston College offered some ominous findings. Twenty percent of retirees will not need any long-term services and supports; 80% will need at least a year of part-time support; and 25% of the population will require full-time support for several years. When you match such large projected needs with the paucity of resources families have available to pay for them — at age 65 only 20% of retirees have family and financial resources to cover high-intensity care for at least three years, and one-third of retirees have no resources at all — you see the proverbial trainwreck coming.
Reporters can do any of these stories in their own neighborhoods using Rowland’s stories as a guidepost. The stories he told can be found in every nook and cranny of the country — in big cities, the suburbs, in rural counties. I have written much about elder care and the underlying issues Rowland has yet again uncovered. We as a country have not moved very far in shifting the long-term care narrative in the past 30 years, even as the Baby Boomers are retiring in droves. In 1963 President John F. Kennedy sent a special message to Congress quoting the historian Arnold Toynbee. “A society’s quality and durability can best be measured ‘by the respect and care given its elderly citizens.’” Evicting 90-year-olds from assisted living facilities and allowing old people to sleep on mats in homeless shelters are signs, however, of America’s lack of care and respect for its oldest residents.
Veteran health care journalist Trudy Lieberman is a contributing editor at the Center for Health Journalism.