CALIFORNIA, USA — Bradley Fisher, a 62-year-old retired mechanic, lived in a Bay Area nursing home for 14 years.
Entering at age 39, Fisher had been partially paralyzed when bone spurs severed tendons in his spine. After a few years of rehabilitation, Fisher said, he could have lived at home with proper care.
“You don’t need to be here,” Fisher remembers a certified nursing assistant telling him around 2005, seven years in, as he sat in his wheelchair in the facility’s cafeteria. “You got all your faculties.”
“Yeah,” Fisher replied, “but I don’t know how to get out.”
While elder care advocates sound the alarm about patient “dumping” by some California nursing homes – kicking out their mentally ill or bereft patients who need stable housing and care – a parallel dilemma is also threatening vulnerable residents: how to get out of a nursing home.
The vast majority of people admitted to California skilled nursing facilities stay for less than three months to rehabilitate a broken limb or recover from a stroke or other ailment, according to the California Association of Health Facilities, an industry trade group.
After these short-term stays, residents typically return home.
But for thousands of poor nursing home residents, like Fisher, a temporary stay can become indefinite. Saddled with hefty Medicare copayments that can reach $5,000 a month – and later stripped of Social Security income, diverted to pay ongoing nursing home costs – they are often unable to hang onto their former housing. They become effectively stranded, with Medi-Cal and Social Security paying for housing and daily living in the facility.
COVID has only intensified the urgency some residents feel to leave their nursing homes, where more than 73,000 have been infected and 9,522 have died as of Jan. 17, according to the California Department of Public Health. The department and Gov. Gavin Newsom have faced criticism of the state’s nursing home oversight as the public health crisis deepened and the death count climbed.
“Everybody wants out right now,” said Karen Stuckey, who has been transitioning residents out of nursing homes and into the community for 11 years with the nonprofit Choice in Aging. “They’re just there because they have no place to go.”
Over 9% of California nursing home residents, an estimated 37,000, have low-level care needs and could potentially live in the community, according to a 2017 estimate by the American Association of Retired Persons. In the organization’s 2020 long-term services scorecard, which analyzed the quality of life, living options and nursing home transitions in every state, California ranked 35th in “effective transitions.”
Federal regulations require nursing home staff to ask residents four times a year about their health and welfare – including whether they would like to speak to someone about leaving the facility. The requirement was adopted in 2010 by the Centers for Medicare & Medicaid Services, which regulates nursing homes that receive federal money. At the state level, the California Department of Public Health is tasked with ensuring that homes meet both federal and state rules.
If residents answer “yes” to the question of leaving – or ask to leave without any prompting – they are supposed to be referred to a program that can fund and organize their moves back into the community.
But thousands of residents’ appeals for help moving out have gone unanswered.
In 2020, California nursing home residents made nearly 14,500 requests to learn about moving back into the community, according to data from Centers for Medicare & Medicaid Services. Only a third of those requests were fulfilled, the federal data show.
And, CalMatters found, there are few consequences for nursing homes who fail to ensure residents’ requests are granted. The California Department of Public Health does not penalize facilities that fail to follow through on residents’ requests.
Nicole Howell investigates nursing home complaints as the Contra Costa County ombudsman, part of a statewide program that assists residents in long-term care facilities.
“You would be shocked by the number of residents who could live in a much less institutional level of care,” she said. “Unless an ombudsman comes across it and knows to ask, people just end up languishing there.”
The California Department of Public Health declined CalMatters’ request for an interview. In an unsigned email response, the department wrote:
“Our goal is to ensure that any nursing home resident that wishes to return to the community has the ability to do so. This is not always possible to achieve.”
The department said it enforces all applicable regulatory requirements and ensures residents’ rights are protected.
Deborah Pacyna, spokeswoman for the California Association of Health Facilities, said the issue “is not on our radar.
“There are so many more important issues surrounding life and death matters, especially more recently,” she said of the devastation caused by the pandemic. “We need to be doing a better job, I mean, that’s the bottom line.”
The association represents some 900 of the state’s 1,223 nursing homes, which care for about 400,000 residents a year.
After CalMatters’ interview with Pacyna, the association sent a letter to its 7,000 members reminding them of the transitions program. “Eligible individuals of all ages with physical and mental disabilities have an opportunity to participate in (the transition program),” the association said in the June 10 letter.
Transitions deemed a civil right
The idea that nursing home residents should be able to transition back home – and get help in doing so – isn’t just on somebody’s wish list.
It’s a civil right.
In 1999, a U.S. Supreme Court decision gave people with disabilities living in nursing homes the civil right to live in the community, if they are able and want to do so.
The court’s reasoning was that “unnecessary institutional segregation… severely diminishes individuals’ everyday life activities,” wrote then-Justice Ruth Bader Ginsburg.
After the ruling, the federal government founded Money Follows the Person in 2008, a program that helps pay for residents to leave facilities and find housing. (In California, the federal program is called California Community Transitions.)
California has 18 transition programs charged with finding affordable housing; paying for a resident’s deposit, first month’s rent and furnishings; and organizing in-home care.
Nationally, the program has moved nearly 100,000 nursing home residents back into the community since 2008, including some 4,000 in California. Though an average of $8,000 is needed to transition one resident, that person’s Medi-Cal costs drop from $85,000 a year to $18,000 on average, once outside the nursing home, according to the state Department of Health Care Services, which manages the program in California.
“Nobody gets up in the morning and goes, ‘Bucket list, I hope I break my hip today and go to a nursing home for the rest of my life,’” said Karen Jones, ombudsman in San Luis Obispo County, “and yet we have a huge expense to make people have that bucket list item.”
Those seniors who do make it out report a higher quality of life and are estimated to have saved California taxpayers hundreds of millions in Medi-Cal costs, according to a 2017 report to congress.
The program is some clients’ only hope for life in the community again, said Stuckey, who has had clients burst into tears on their first steps out of the facility.
But in California and elsewhere, the number of residents whose requests are being neglected is most likely a “gross underestimate,” said Kelly Bagby, vice president at the AARP Foundation Litigation Team. Bagby’s team is suing states for failing to protect residents’ right to live outside a facility.
“When a state knows that it’s not working, that only a small fraction of people are even aware that they have this right,” she said, “then the state has failed.”
Stuck in the ‘poverty pipeline’
In 2019, Virgil Steele was walking in Oxnard when he tweaked his neck and his right arm went limp – “like rubber,” he said.
Ever since a camper shell dropped on Steele’s neck two decades earlier, small neck injuries required surgery and rehabilitation.
At the time, the 62-year-old disabled mechanic was living out of his Volkswagen Bug, parked at the shop where he helped repair motorcycles from his wheelchair. Now he needed hospitalization.
On that day, Steele entered what elder care advocate Karen Stuckey calls the “poverty pipeline.”
As she describes it, this is a common scenario where people are injured, then shunted from the hospital to a nursing home where copays and required shared costs drain their coffers.
After a week in the hospital, Steele was discharged to an area nursing home.
There, Medicare covered Steele’s bill — but only for the first 20 days. After that, Medicare reduced its payment to 80% and Steele, like all nursing home residents, was responsible for the remainder – which can reach $5,000 a month.
Already short on funds, Steele qualified for Medi-Cal, the state’s low-income insurance, which picked up the 20% copayment. After three months of rehabilitation, a patient’s status becomes long-term care and Medicare stops paying altogether; now Medi-Cal foots the entire bill.
But Medi-Cal, the ostensibly free insurance, has a price. Once in long-term care, every cent of a nursing home resident’s Social Security Income, save for a $35 monthly allowance, is taken to help pay for the daily costs of living in the nursing home, such as food, housing and utilities.
Steele couldn’t pay rent for space to park his car on $35 a month. Eventually, his Volkswagen was towed, along with all his belongings, to pay off the rental debt.
“I lost everything,” he said.
Failure to pay rent is the leading reason nursing home residents lose their housing, according to several transition organizations.
By July 2020, the nursing home’s social worker linked Steele with a transition program called LIFE Incorporated in Camarillo, north of Los Angeles. But as preparations began to move him, medical dividers were raised in the facility’s hallways, staff donned PPE suits, and bodies were carried past him in blue bags.
“I was tempted to run,” Steele said. “I was trapped there and the COVID was coming to get me.”
Just before that Christmas of 2020, he was infected with the virus. On Christmas Day, his adult children called, but he couldn’t bring himself to tell them his diagnosis. That evening, the staff gave him peppermints and a Christmas card.
Steele, now 64, survived and was moved to an apartment in Oxnard a few months later. Though he’s thankful to be outside the facility, his life’s belongings are gone.
“When I left the (facility) I didn’t have anything anymore,” he said, “I don’t have anything now.”
No penalty for transition failures
In California, the Department of Public Health does not regulate how quickly a facility should refer a resident to a transition program. And it doesn’t cite or fine a home for failing to refer.
In 2020, two-thirds of California residents’ requests weren’t referred at all, according to federal data.
“The obligation to make the referral is explicit,” said Bagby, referring to the mandatory survey. But without a state regulation spelling out a timetable, she said, “the state can’t sanction facilities that don’t make the referral.”
Representatives of several California transition programs said the lack of consequences leaves residents at the whim of nursing homes.
A 2016 report by the U.S. Health and Human Services’ Office of Civil Rights found that most nursing homes “never ask, or nearly never ask” residents the question about their rights and living options. The federal investigation concluded that nursing staff weren’t properly trained and misinterpreted the quarterly survey’s instructions.
The agency recommended that nursing homes invite California Community Transition programs to present to residents and staff every six months.
Representatives of eight transition programs in California, which cover more than 700 nursing homes, told CalMatters that only three facilities had ever requested a presentation.
DeAnn Walters, a former nursing home administrator who is now at the California Association of Health Facilities, said she doesn’t recall the federal report and recommendations.
The California Department of Public Health, which routinely issues “All Facilities Letters” about new requirements or regulatory changes, did not address the report’s findings and recommendations.
In its unsigned email response to CalMatters, the department wrote: “Recommendations by any entity do not mandate the issuing of an All Facility Letter.”
Advocates worry it can be a conflict of interest for nursing homes to be responsible for referring residents out of their facilities.
A Medicare resident brings a facility substantially more in federal money than the state provides through its Medi-Cal program for low-income Californians. To even be eligible for transition services, a resident must qualify for Medi-Cal.
Once nursing homes understand that California Community Transitions won’t likely move their more lucrative Medicare patients, said Stuckey, “They love what we do, and they want to refer.”
Jules Boddie, a 69-year-old retired state clerk who entered a Sacramento nursing home in 2018, said he lost his housing while awaiting transition help.
“It’s just like being put in a box and forgotten,” he said.
Boddie said he repeatedly asked for help returning home but waited more than a year and a half before getting any assistance.
The facility’s former director of nursing told CalMatters that, to her knowledge, Boddie never relayed such requests to staff. She produced quarterly assessments showing that Boddie had declined offers to receive help moving out.
Boddie, who is on Medi-Cal, said he has no memory of this.
But help eventually came. In the fall of 2020, he said, a new social worker came on board and quickly referred him to Choice in Aging, which placed him on a waitlist for affordable housing.
One week before Boddie moved into temporary housing, he was infected with COVID-19. As he gasped for air in the hospital, his new room was given to the next person on the waitlist.
He said he cautioned other residents: “You have a life outside the nursing home. Don’t give up on it.”
He was moved out of the facility and into shared housing in Sacramento on July 30.
‘The most peaceful I’ve ever been’
Even with the urgency of a pandemic, transitioning just one resident takes seven months on average, the Department of Health Care Services told CalMatters. Transition program workers say they face a gantlet of state regulations, reams of paperwork and affordable housing waitlists that can stretch five years.
“It’s such a process,” said Stuckey, “that unless they already have housing, we really have no control over it.”
The U.S. Supreme Court determined that, for patients hoping to transition, states must provide enough affordable housing so the waiting lists move at a “reasonable” pace.
The Department of Housing and Urban Development recommends states keep wait times below two years, but in California, the average wait time is more than 2 ½ years.
The governor’s Master Plan for Aging, released in January 2021, includes initiatives to expand affordable housing for seniors with $250 million in proposed funding. That could shorten waitlists for nursing home residents who’ve lost their housing.
Funding for Money Follows the Person ended in 2018, and Congress has passed five short-term extensions. The latest will keep the program running until 2027.
With funding shaky, nationwide transitions between 2018 and 2019 plummeted to 5,000, dropping below 10,000 for the first time since 2012. California reduced its transitions to under half of its 2014-2016 transitions, according to a 2020 report by the Community Living Policy Center.
Last year, the California Department of Health Care Services received a $5 million federal grant to help identify nursing home residents eligible to transition, like Bradley Fisher.
Over Fisher’s 14 years in the Bay Area facility, staff never asked him if he wanted to move out, he said, and did not inform him of his civil right to do so. The facility’s administrator told CalMatters in an email that records of Fisher’s quarterly surveys aren’t available.
Fisher said he began taking antidepressants while inside the home.
“I felt like I was stuck,” he said. “I even thought that playing bingo would get me out of this funk, but it never did. Nothing would.”
In 2012, a fellow resident told Fisher about a woman named Karen Stuckey, who was organizing that resident’s move out of the nursing home.
“She can get you out, too,” Fisher remembers him saying.
Months later, Fisher was moved to a shared apartment in Antioch. Initially rocked by anxiety after leaving his home of 14 years – and hospitalized twice with panic attacks — Fisher stuck it out.
“It’s the most peaceful I’ve ever been,” he said. ”I feel like a knot in my gut has been removed.”
This story originated with the Investigative Reporting Program at UC Berkeley, with SCAN Foundation funding.