Illustration by Jandos Rothstein
This story was supported by the journalism nonprofit the Economic Hardship Reporting Project.
For 24 years, Marie Giardino and her partner Michaeljon Blue made a home, a cozy yellow house with a front porch and fenced backyard in Rochester, New York. They lived with many cats and dogs lucky enough to once cross Blue’s path: “If a baby needs a home, he will come here,” she liked to say. Not long after moving in together, Blue gave Giardino a silver band. She never exactly said what it was for—Blue was never one for labels and doesn’t believe in marriage—but Giardino took it as a sign of the love they still share.
“We know each other about as well as any two people could know each other,” Giardino told me. “There were always things that we could talk about. We just were comfortable and safe in each other’s presence.” They passed the time driving along scenic Route 104, shooting pool at a local bar, and going to a diner in town, where the waitstaff would let them chat late into the night. Mostly, they just liked the feeling of being together.
It’s incredibly easy to grow old and die in the United States without community or proper care, especially for low-income, chronically ill seniors who rely on Medicaid.
They planned to grow old together, and for a while they did just that. Yet this dream has been cut short, not because of a breakdown in their relationship, but because of deep fractures in the systems intended to provide care to disabled and older adults. The trouble began with a hospital visit and ended with Blue being evicted from a nursing home, putting the two partners 80 miles apart while deeply in debt. “It’s a very hard situation. I’m not even sure I can put a lot of words around it because it’s a day by day [experience],” said Giardino. “If I had my choice, I’d be living at home with Michaeljon and we’d be taking care of our animals, doing our thing.”
The situation illuminates a painful reality for many nursing home residents who come into contact with the byzantine system of how Americans pay for elder care. It’s incredibly easy to grow old and die in the United States without community or proper care, especially for low-income, chronically ill seniors who rely on Medicaid. These residents are especially vulnerable to being evicted from their nursing homes and involuntarily transferred elsewhere, and this is often wielded as a threat to get exorbitant and even predatory debts repaid. “It’s a way to bring pressure on the family, who often fear the loss of being able to see their loved one,” said Jeff Nieznanski, a supervising attorney at Legal Assistance of Western New York, who is representing Blue as she attempts to reunite with her partner.
THE LAST OF BLUE’S MANY JOBS involved driving semitrucks across the country, but her asthma got so bad, she had to stop. Not long after, she began showing signs of dementia—leaving the stove on, getting lost while driving. Giardino started bringing Blue to work with her at Genesee Community College, but then her post-polio symptoms (exhaustion, decreased mobility) started worsening. So she retired to care for herself and Blue.
Shortly into this retirement, Blue grew severely disoriented and nonresponsive, so Giardino rushed her to the emergency room. It turned out to be atrial fibrillation and a urinary tract infection, which contributed to her confusion. She was discharged to a nursing home and then back home, but the same issues emerged again as the dementia progressed.
Over the next six months, she returned to the hospital twice more. After the third visit, she was discharged to The Shore Winds, a nursing home in Rochester. It wasn’t in the plan, but Giardino soon realized that she was no longer able to care for Blue, and made the hard decision to indefinitely extend her stay at the nursing home.
In October 2017, about a week into her stay, Blue was provided with a notice that her Medicare coverage would be cut. The nursing home determined that she no longer needed Medicare-covered rehabilitative care. The notice was supposed to be delivered to Giardino, who has Blue’s power of attorney and would have appealed the decision. Instead, Blue signed away her right to appeal, without fully knowing what she was signing.
Under state and federal regulations, it is legal to evict a nursing home resident for nonpayment, even if they lack capacity.
After Medicare was cut, it took another three months for Blue to be covered by Medicaid, which pays for longer-term nursing home care. There’s a built-in flaw in the Medicaid system: It requires a near-total lack of financial assets, and the assessment of five years’ worth of financial records to prove that an applicant has exhausted their resources (without gifting any assets), to qualify for coverage. This “look-back period” often results in delays that can throw applicants into a period of limbo. Typically, Medicaid will pay retroactively to cover any delays after the application process begins, but an unexplained transfer in 2012 of $62,000 from Blue’s bank account, which neither could explain, led Medicaid to impose a penalty period, leaving Blue without coverage for months, despite being destitute.
Blue’s bill accumulated to $38,467, two-thirds of which accrued during the gap in coverage between Medicare and Medicaid. Giardino disputes this majority of the bill, given that she wasn’t provided with the Medicare cut notice and informed of the change in coverage, which violates Medicare rules. “Medicare rules say a facility is not allowed to charge services if they don’t follow the rules. Nevertheless, they did charge and that’s why there is this outstanding bill,” said Nieznanski.
When Medicaid began paying, Giardino also made a common mistake: She initially didn’t realize she had to pay for a portion of this bill with Blue’s monthly Social Security check. Unlike Medicare, which fully covers the first 20 days of one’s nursing home care, Medicaid-paying residents owe almost all of their income, known as the Net Available Monthly Income. This part of the debt Giardino doesn’t dispute.
In February 2019, Giardino was informed that Blue would be evicted from The Shore Winds to another nursing home 80 miles away, unless she squared the debt. She offered to pay the undisputed charge as a lump sum of $12,674.27 and a recurring monthly payment, but the nursing home declined. She didn’t have the funds for the rest. “I can’t give them what I don’t have,” Giardino told me.
In April 2019, a hearing was held by the New York Department of Health, in which Giardino testified, “I hope that we’ll come to some decision that will be equitable for Michaeljon because her well-being is my only concern.” This, however, did not persuade the judge, who determined that the eviction met regulations.
A few months later, Blue was placed in a medical cab, without understanding where she was going or why. Giardino likened Blue’s capacity to that of a baby, aware of her surroundings but not sequences of events. As she watched her partner being evicted, it didn’t seem to Giardino like she was being cared for as a person forced to leave her home should be. “It just seemed very matter-of-fact,” Giardino told me. “I didn’t see anyone from the staff saying goodbye to her.”
Giardino asked to ride in the medical cab by Blue’s side, but was told she couldn’t. So she followed behind her for the drive to Hornell Gardens, part of Hurlbut Care Communities, the same corporate nursing home consortium as The Shore Winds. When they arrived, the staff were aware that Blue was coming, but not the time of her arrival.
Giardino’s biggest concern about the new facility was that it would prevent her from regularly visiting and checking up on her partner, given that her post-polio symptoms made it challenging, and sometimes impossible, to travel such a distance.
“I left there that day with a heavy heart,” Giardino told me. Since then, she has called Blue every day, for five to ten minutes, but it isn’t the same. After all, what she liked best about their time together was being in her presence.
The administrator of The Shore Winds, the administrator of Hornell Gardens, and a representative from Hurlbut Care Communities did not respond to a request for comment.
Courtesy of Marie Giardino
Marie Giardino, left, and Michaeljon Blue at the Hornell Gardens nursing home in January 2020, the last time they were able to see each other indoors.
SINCE BLUE’S EVICTION, Giardino has been fighting the decision with the help of lawyers at Empire Justice Center, Legal Assistance of Western New York, and Disability Rights New York. She appealed the New York Department of Health’s decision, a largely unprecedented move that makes this one of the first nursing home eviction cases to enter the New York court system. Under state and federal regulations, it is legal to evict a nursing home resident for nonpayment, even if they lack capacity. However, by separating Blue from her partner, her community, and specialized doctors, lawyers argued that the eviction failed to follow regulations on safe discharges and resident rights, and that a resident shouldn’t be evicted when a large part of the debt is disputed. In March, the appeal was denied.
Blue’s legal team is deciding whether to pursue another appeal, potentially bringing the case to the New York State Court of Appeals, the highest court in the state. “It would create a new precedent,” said Nieznanski. “It would essentially make law in New York as to how these discharges are to be handled.”
Nursing home evictions, technically known as involuntary discharges or transfers, are consistently the most common complaint received by the Long-Term Care Ombudsman Program, a federal program that advocates for the rights of nursing home residents. The program received 3,883 complaints related to nursing home evictions or admissions in 2019, the most recent year that data is available. Between January 2016 and June 2019, the New York Department of Health heard 113 cases on nursing home evictions, including to homeless shelters and a motel, according to documents obtained by Nieznanski through a Freedom of Information Act request. This captures only a fraction of nursing home evictions, the majority of which never have a hearing.
“This happens under the table. That’s the whole point. In so many of these cases, the facility just says, ‘Get out,’ or ‘We’re moving you,’” said Eric Carlson, a directing attorney at Justice in Aging, a nonprofit focused on senior poverty.
Even an eviction to another nursing home can be highly disruptive. It can lead to deteriorating health and cause residents with dementia to act out, which Tracy Greene Mintz, a national expert in the study of transfer trauma, described as “a completely normal response to being yanked out of your home and put in some other place.” Mintz notes that it is common for symptoms of trauma from an eviction to be misattributed to dementia.
There is some data to suggest that LGBTQ elders are especially vulnerable to nursing home evictions. In a 2011 national survey, led by Justice in Aging in collaboration with LGBTQ nonprofits, abrupt or attempted evictions from nursing homes on the basis of one’s “actual or perceived sexual orientation and identity” was found to be a top concern among LGBTQ seniors. Tim Johnston, who works at SAGE, the nation’s oldest nonprofit for LGBTQ elders, notes that nursing homes may discharge LGBTQ residents whom they deem “difficult,” due to an aspect of their identity. The facility can claim they are unable to meet their health needs, which is one of the permitted reasons for a discharge, but can be used to justify discrimination, or simply a lack of competency in LGBTQ care.
Blue’s lawyers and partner do not allege discrimination, yet her case does reflect some common experiences of LGBTQ adults in nursing homes. For one, Blue’s eviction led to her separation from her partner and long-held friends in Rochester, an example of just one of the ways nursing homes fail to recognize and accommodate the chosen family of LGBTQ residents. “[Nursing homes] are not particularly well set up for integrating friends, volunteers, community members, or other folks who might not be legal relations, but should be a part of the person’s circle and possibly care planning,” said Johnston.
On top of this, LGBTQ seniors experience high rates of poverty, as they often lack a social and financial support network, which can make them vulnerable to a nursing home eviction due to nonpayment. Nonpayment is one of the most common reasons for evictions, especially within Blue’s nursing home consortium, the Hurlbut Care Communities.
LGBTQ seniors experience high rates of poverty, as they often lack a social and financial support network, which can make them vulnerable to nursing home eviction.
IN 2016, THE CENTERS FOR MEDICARE & Medicaid Services began requiring nursing homes to send involuntary discharge notices to state ombudsman programs. Soon after, Alana Russell, who then directed the ombudsman program at Lifespan of Greater Rochester, an older-adult advocacy nonprofit, began noticing a rash of evictions all coming from Hurlbut Care Communities. The corporate nursing home consortium operates 13 facilities in the Finger Lakes region of New York, including The Shore Winds and Hornell Gardens. Between 2017 and 2021, there were 38 transfer notices between nursing homes within the consortium issued due to a failure to pay, according to data collected by Lifespan of Greater Rochester.
The notices stood out to Russell for a few reasons. First, they were specifically for nonpayment, often astronomical sums accrued unintentionally or due to financial exploitation. Residents or their representatives often didn’t fully understand what they needed to pay, something Russell described as “benign, unintended nonpayment.” More concerning to Russell were the evictions that involved pocketing the resident’s Social Security checks, which are required by Medicaid to help pay for the nursing home bill. In response, the nursing home that took the resident’s source of income punishes them with an eviction, despite residents often lacking capacity and legal authority over their own finances.
It also struck Russell as odd that all but one eviction notice resulted in the resident being sent to the same destination: Hornell Gardens, where Blue now resides. “It is their furthest-away facility, in a totally different county, in Steuben County,” said Russell. “I wondered, ‘Why are they choosing this farthest-away place?’”
Nursing home evictions for nonpayment do not directly resolve the issue of a debt, much less financial exploitation. Yet a looming eviction can threaten a family into paying a debt, using access to loved ones as a prod to force payment. There’s also the consideration that Medicaid-paying residents are less financially desirable to nursing homes than Medicare-paying residents, given that Medicare has a higher reimbursement rate. This creates an incentive to fill more-lucrative Medicare beds, potentially by shuffling lower-paying residents to another facility.
Even throughout the ongoing COVID-19 pandemic, Hurlbut Care Communities facilities, along with nursing homes across the country, continued to threaten residents with evictions. Between March 2020 and January 2021, three residents received discharge notices from a Hurlbut Care Communities facility to Hornell Gardens, according to Lifespan of Greater Rochester’s data. The federal government, along with many states, instituted a moratorium on residential evictions to prevent the spread of COVID-19, yet this did not extend to nursing homes, where many of those most susceptible to COVID-19 reside.
Hornell Gardens ended up having a large COVID-19 outbreak and is now under investigation by New York Attorney General Letitia James for safety failures during the pandemic. In April 2020, Blue tested positive for COVID-19, but she fortunately didn’t show any symptoms. Around the same time, a resident who had been evicted and transferred to Hornell Gardens due to a debt—the result of delayed Medicaid coverage—ended up dying of COVID-19.
If he hadn’t died, he would be in a similar position as Blue, indefinitely separated by 80 miles from his family in the Rochester area.
At the heart of Blue’s case is the extent to which the emotional, social, and complex medical needs of a resident should be legally considered during nursing home evictions.
NURSING HOMES ARE BUSINESSES, but they’re also meant to be homes where many people spend the last years of their lives, often with diminishing capacity. People who live in nursing homes are referred to as residents rather than patients. It’s this idea that’s at the heart of the 1987 Nursing Home Reform Act, a sweeping piece of federal legislation that established a bill of rights for residents, including the right to a dignified existence, self-determination, access to community, and rights during discharges.
In March, New York passed a law strengthening protections from evictions for nursing home residents, especially to dangerous, temporary locations. Yet the law doesn’t prevent nursing homes from discharging residents for nonpayment and exploitative debts, nor does it address the financial motivations that often spur evictions, at the expense of a resident’s health, well-being, and social connections.
“[The law] doesn’t really target the central issue, unfortunately, which is that these involuntary transfers or discharges are from the business office,” said Alexia Mickles, a staff attorney at Empire Justice Center. “They’re business decisions. It doesn’t account for the medical needs of the residents.”
The decision to evict Blue was a financial one, not involving the input of a social worker or doctor. Maggie Ganon, who at the time was the director of social work at The Shore Winds, testified that she was not involved until after the eviction decision was already determined, nor were any of Blue’s specialized doctors consulted. “It is apparently the decision of the respondent’s corporate office to put this frail and aged resident out even though she has been paying current charges since 2018,” wrote administrative law judge John Terepka, in his decision. Nevertheless, Terepka determined that Blue’s eviction was aligned with regulations.
Michael Scott-Kristansen, a lawyer representing The Shore Winds, contends that Blue’s eviction is lawful. “With respect to any resident transfer and/or discharge, our client strictly adheres to its legal obligations, safely transferring residents only when it is legally permissible and only with appropriate planning and advance notice,” he wrote, in response to a request for comment.
A question, then, at the heart of Blue’s case is the extent to which the emotional, social, and the complex medical needs of a resident should be legally considered during nursing home evictions. Blue will not just be separated from her partner, but also the group of gay women that she and Giardino would go to a diner with every Sunday. Is the prospect of tearing apart partnership, friendship, and love enough to stop an eviction?
This arose again in the oral arguments for Blue’s appeal case, where Fiona Wolfe, a senior attorney at Empire Justice Center, argued that the distance alone makes the discharge inappropriate. Appellate division judge Erin Peradotto pushed back on this in the hearing, saying that the two nursing homes “could provide the exact same services to the petitioner”—that the two nursing homes are, essentially, interchangeable.
Eric Carlson, of Justice in Aging, who is not involved in this case, took issue with the idea that distance shouldn’t matter in discharges. “If you value nursing home residents as human beings, then you have to recognize that it does matter,” he told me. “The environment matters. The stability matters. The personal connections matter. The community matters. The ability to get visits from your family or friends matters. It all matters.”
