As the coronavirus spreads across the United States, nursing home residents are among the most vulnerable to the disease. How to try to ensure that your loved one stays healthy?
The first thing you can do is research the nursing home. While you likely made inquiries before your loved one moved in, you may not have gotten into specifics about the facility’s policies for preventing infection. The Centers for Disease Control (CDC) has a factsheet that covers key questions to ask nursing home officials about their infection prevention policies, including:
How does the facility communicate with family when an outbreak occurs?
Are sick staff members allowed to go home without losing pay or time off?
How are staff trained on hygiene?
Are there private rooms for residents who develop symptoms?
How is shared equipment cleaned?
You can also check on staffing levels. Facilities that are understaffed may have workers who are rushing and not practicing good hand-washing. There are no federal minimum staffing levels for nurses aides, who provide the most day-to-day care, but the federal government recommends a daily minimum standard of 4.1 hours of total nursing time per patient.
The Centers for Medicare and Medicaid Services and the CDC have issued guidance to nursing homes to try to prevent the spread of the coronavirus, including restricting all visitors except in end-of-life situations. You should follow the rules of the facility. If the facility is not limiting or not allowing visitors, do not try to break the rules.
You should check with the facility to make sure it is following the guidance from CMS and the CDC, which includes recommendations to do the following:
• Restrict all visitors, with exceptions for compassionate care
• Restrict all volunteers and nonessential health care personnel
• Cancel all group activities and communal dining
• Begin screening residents and health care personnel for fever and respiratory symptoms
• Put hand sanitizer in every room and common area
• Make facemasks available to people who are coughing
• Have hospital-grade disinfectants available
To read the detailed guidance from the CDC, click here.
Research finds that that data used by a popular website for researching the safety of nursing homes may be highly inaccurate
UNIVERSITY OF CHICAGO
The website Nursing Home Compare, sponsored by the Centers for Medicare & Medicaid Services, is a go-to resource for many families researching nursing home options for their loved ones. The number of falls that lead to injury are a critical category of concern for nursing home residents, however, a University of Chicago researcher has found that the data used by Nursing Home Compare to report patient safety related to falls may be highly inaccurate.
Prachi Sanghavi, PhD, an assistant professor in public health sciences at UChicago, uncovered significant discrepancies between the falls calculations used for Nursing Home Compare’s ratings and actual Medicare claims for falls by nursing home residents from 2011-2015. She found that only 57.5% of falls were accounted for in the Nursing Home Compare’s Minimum Data Set (MDS), which is self-reported by nursing homes. Reporting rates were higher for white residents (59%) than non-white residents (46%) and for long-term stays (62.9%) than short-term stays (47.1%). The findings were published December 29, 2019 in the journal Health Services Research.
“This is a substantial amount of underreporting and is deeply concerning because without good measurement, we cannot identify nursing homes that may be less safe and in need of improvement,” Sanghavi said.
A significant, yet preventable, risk
Falls are a leading cause of death among the over-65 population, and they can lead to other serious injuries. Patients become fearful of walking again for fear of reinjury, yet falls are considered widely preventable. They are a discrete event that is easy to identify and record, compared to other clinical conditions on Nursing Home Compare such as pressure ulcers or infections, so there should be a wealth of reliable data.
“That’s why falls are a patient safety measure on Nursing Home Compare,” Sanghavi said. “They reflect how well a nursing home does at preventing these injuries.”
Sanghavi started her research with a data set of nearly 88.7 million Medicare admissions claims from 2011 to 2015. She narrowed the sample set in stages, zeroing in on nursing home residents who met several criteria. First, their fall occurred during their time in the nursing home. Second, they were discharged from the nursing home to go to a hospital. Third, the patient’s Medicare claim was filed under the code for a major injury fall. Finally, they returned to the same nursing home after treatment for the fall.
“We wanted to be as conservative as possible in our calculations so there would be little argument about whether a fall should have been reported,” Sanghavi said. “Our primary outcome measure was based on whether a fall with the appropriate code was reported or not.”
Using these criteria, Sanghavi identified 150,828 major injury falls in Medicare claims filed by nursing home residents. The data used by Nursing Home Compare accounted for only 57.5% of these falls, with far fewer falls being reported for black, Asian, and Hispanic patients relative to whites.
Accounting for discrepancies
Nursing Home Compare has faced prior scrutiny for using self-reported data. Sanghavi’s own research was sparked by a 2014 New York Times investigation into serious deficiencies found in nursing homes rated five stars by Nursing Home Compare.
“I found it odd that Nursing Home Compare would use self-reported data,” she said. “Having worked with Medicare claims data, I thought I could use it to study MDS reporting. The Medicare claims we used are hospital bills. They want to get paid and should not have an interest in nursing home public reporting. That’s why they are a more objective source than the self-reported data from nursing homes.”
Sanghavi has two theories on why the reporting rate is nearly 15 points higher for long-term stays than short-term stays. “It could be that the nursing homes are more familiar with long-stay patients,” she said. “Plus, the falls measure on Nursing Home Compare is specifically for long stays. It could be that nursing homes are taking that measure more seriously.”
Sanghavi was especially surprised by the 13-point difference in falls reporting between white and non-white residents. “I didn’t expect it to be that different by race,” she said, “but it is consistent with other modes of racial disparities in long-term care.”
Based on her results, Sanghavi suggests that the Centers for Medicare & Medicaid Services change their evaluation criteria for falls on Nursing Home Compare.
“They should use an objective source, like claims data,” she said. “It should be relatively easy for them to do, since they already have the data. There are other claims-based measures already used on Nursing Home Compare.”
BISHOP, Calif. — When Jamie Moore arrived home on a Thursday evening in March, she was surprised to find her mother-in-law in her living room. Glenda Moore, 67, had been sitting in her wheelchair for hours. Without anyone to help her to the bathroom, she’d had an accident. She was also having trouble breathing. “It was awful,” Jamie Moore recalled.
Glenda Moore told Jamie that she had been discharged from the Bishop Care Center nursing home, in Bishop, California. She had been living at the nursing home — a sprawling brick building on the side of a state highway — for several weeks, recovering from a back surgery that unexpectedly left her unable to walk much or take care of herself.
Several days earlier, nursing home administrators had shown Glenda Moore a letter from Medicare, explaining that her rehabilitation coverage was ending. She was unable to pay the nursing home’s more-than-$7,000 monthly fee, so, thinking she had no other options, she left. (A relative dropped her off at Jamie’s home, where Glenda Moore had lived previously, without telling Jamie.)
“They pushed her out and she was not ready,” Jamie Moore, who has worked as a nursing assistant, said. “She was not ready at all.”
As the family later learned, Glenda Moore had the right to appeal the Medicare decision, or to apply for Medicaid — and, if she qualified (which she later did), to stay in the nursing home on Medicaid for as long as she needed nursing care. Instead, Moore’s family said, Moore became one of thousands of Americans discharged against their wishes or evicted from nursing homes each year. (The Bishop Care Center maintains that Moore’s health had improved and that she voluntarily left the facility, and points out that they gave her a document noting her right to appeal the Medicare decision.)
Nationally, long-term care ombudsmen, who advocate for elderly and disabled residents of nursing homes and assisted living facilities, received 10,610 complaints about discharges and transfers in 2017, up from 9,192 in 2015. The ombudsmen, whose work is federally mandated and state-funded, receive more complaints about discharges and transfers than any other grievance.
The complaints likely expose just a small fraction of the problem, said Kelly Bagby, vice president at the AARP Foundation, a nonprofit that serves vulnerable people over 50.
“Most people don’t even know they have rights,” she said. And many complaints never result in a formal state investigation.
Advocates, experts and the federal government say that nursing homes tend to evict low-income, longer-term residents who receive Medicaid, to make room for shorter-term rehabilitation patients who are covered by Medicare. Medicare reimburses nursing homes at a higher rate than Medicaid, so it’s more lucrative for facilities to house Medicare patients who stay for short stints before recovering and moving elsewhere.
In California, for example, the average state Medicaid reimbursement for a nursing home is $219 per day, according to the California Association of Health Facilities, while Medicare may reimburse more than $1,000 per day, but only for up to 20 days, when patients must begin paying part of the fees. (Medicare coverage ends completely after 100 days.) Advocates say that eviction notices are often handed out around the 20-day mark.
“It is illegal to discriminate against residents based on payment source, but it happens all the time,” said Tony Chicotel, attorney at the California Advocates for Nursing Home Reform, a nonprofit that supports long-term care residents in the state. “It feels like there’s just a tidal wave of cases.”
Chicotel said he receives calls every day from panicked residents or family members being threatened with discharge from a long-term care facility.
Deborah Pacyna, director of public affairs at the California Association of Health Facilities, a trade association representing nursing homes, told NBC News that improper and illegal discharges are “a really rare thing,” and that the issue is exaggerated by media attention.
She added that California’s Medicaid program, Medical, does not provide “adequate funding” to care for many patients with complicated health issues and behavioral disorders. “Medicare pays more. Those people are rehab patients; they’re in and out,” she said. “That is how they break even,” she added of nursing homes. “Society’s problems are manifesting themselves on the doorsteps of nursing homes.”
‘You’re just a piece of garbage’
Nursing homes are legally permitted to evict residents under several conditions: if a resident’s health improves sufficiently; if his presence in a facility puts others in danger; if the resident’s needs cannot be met by the facility; if he stops paying and has not applied for Medicare or Medicaid; or if the facility closes. Facilities are obligated under federal law to give 30 days’ notice, in writing, and also to work with the resident on a transition plan.
Bagby, of the AARP, said that while some residents are issued formal discharge letters with advance notice, others are asked or pressured to leave with “no due process rights, no notice.”
In one case in Los Angeles, in April 2018, Ronald Anderson said he was woken at night by the nursing home staff at the Avalon Villa Care Center and told he was being evicted. Anderson, 51 at the time, had moved into the facility over a year earlier to recover from a partial foot amputation. He said he was loaded into a van and dropped off on a sidewalk in downtown Los Angeles, which has one of the largest homeless populations in the country, according to a report from the California Department of Public Health.
Anderson, who is diabetic, was left in a wheelchair without his insulin or testing supplies — on a street cluttered with tent encampments and broken glass. The Department of Public Health report noted that he could have slipped into a coma or died.
“You’re just a piece of garbage,” Anderson said, from the Union Rescue Mission homeless shelter in Los Angeles where he now lives. “They’ll kick you right out on the curb.”
Avalon Villa Health Care, which runs the nursing home, later paid $450,000 to settle a civil complaint filed by the Los Angeles city attorney in response to Anderson’s case and other evictions of homeless residents, with the money going toward civil penalties, hiring and training Avalon Villa staff and finding temporary housing for the facility’s homeless residents. The city attorney set up an emergency hotline and invited members of the public to report cases of resident abandonment.
A lawyer for the Avalon Villa Care Center told NBC News that the facility “strongly disputes that it has inappropriately discharged any patients” and “rejects the allegations of the city attorney.”
The Rev. Andy Bales, director of the Union Rescue Mission, said “resident dumping” from nursing homes and hospitals is so common that the shelter set up a security camera outside — which Bales calls “the dump cam” — to capture evidence of it. He said he is aware of at least four instances from the last year in which people have been dropped off on nearby streets by hospitals or nursing homes — though he believes the number is higher. As a result of the security camera, he said, “They won’t dump them off in front of us anymore.”
California’s long-term care ombudsmen received 1,404 complaints about nursing home evictions in 2018, up from 1,022 in 2014. Severallawsuitsconcerning nursing home discharges have recently been filed in the state.
Molly Davies, a California long-term care ombudsman, said that in addition to receiving more complaints about evictions, “there has also been an uptick in the egregiousness of some of these cases.”
In some instances, she and other experts said, nursing homes drop residents off at a low-cost motel and pay for a night or two. “We’ve seen cases with residents who have dementia put into a van and dropped downtown onto the streets, without the ability to care for themselves,” she said.
The California Department of Public Health does not track where nursing homes discharge patients, according to a department spokesman, nor does the California long-term care ombudsman program. In some instances, however, routine state inspections and inspections following complaints uncover problems.
In a 2018 incident, described in a California Department of Health and Human Services report, a Rosemead nursing home discharged a resident to a hotel without any medical equipment and without ensuring that the hotel was “a safe environment.” The female resident still required assistance with activities such as using the toilet and bathing, and was found to lack “the capacity to make her needs known.” The nursing home received a federal “deficiency” citation.
In another case that resulted in a deficiency citation, a nursing home resident who “needed extensive assistance” to move between locations in his bedroom was discharged to a motel — and, a few days later, ended up in a hospital for emergency care.
These practices are not unique to California. In Maryland, one nursing home resident was dropped off in Baltimore, a city she had never been to, according to the state attorney general’s office. In another instance, a Washington County Sheriff’s deputy accused a nursing home of discharging a resident to a storage unit on a hot summer day.
Even when residents appeal eviction decisions through a state process and win the right to return to a nursing home, that nursing home sometimes refuses to readmit them, a group of plaintiffs told the Ninth Circuit Court of Appeals found in July. The case is still pending, but the appeals court agreed with the plaintiffs that federal law does not allow “meaningless show trials that allow nursing homes to persist in improper transfers and discharges.”
The California Department of Health Care Services, the California Department of Public Health and the federal Centers for Medicare & Medicaid Services all declined to comment, citing department policy not to comment on pending litigation.
A push for enforcement
In 2016, the Centers for Medicare & Medicaid Services strengthened regulatory requirements around nursing home discharges and transfers, specifying that residents cannot be evicted for nonpayment while they are in the process of applying for Medicaid or appealing a Medicaid denial. A year later, the agency announced an initiative to prevent illegal nursing home discharges, acknowledging that “some discharges are driven by payment concerns, such as when Medicare or private pay residents shift to Medicaid as the payment source.”
So far, the agency has approved $784,630 for a program in California that focuses on training nursing home staff on discharge regulations, a spokeswoman said in an email. The agency also provided $84,00 for a smaller project in Montana. Beyond that, the agency is not acting directly to address illegal evictions but is instead encouraging states “to propose projects that seek to address facility-initiated discharges that violate federal regulations,” the spokeswoman said by email.
Advocates for nursing home patients said more is needed. They want both federal and state agencies to do more to enforce existing rules on evictions.
“We haven’t seen any change in practice,” said Davies, the California long-term care ombudsman. “We haven’t seen a reduction in inappropriate transfers and discharges. There are certain enforcement tools that they have that they aren’t using consistently.” These tools, she said, include substantial fines.
But the federal government has made changes that reduced fines against nursing homes that harm or endanger residents. Nursing homes used to receive fines for each day a violation was observed, but after a change the Trump administration implemented in July 2017, nursing homes are now usually fined just once per retroactive violation.
Robyn Grant, director of public policy and advocacy at the National Consumer Voice for Quality Long-Term Care, an advocacy group, says this change can affect the way illegal evictions are punished. For instance, a nursing home that evicts a patient and refuses to readmit the person may be fined one time, instead of every day that the resident is denied access to a bed.
In the first 18 months following the change in guidelines, nursing homes across the country paid about $47 million less in fines for all violations compared to the previous 18-month period, said Dr. David Gifford, senior vice president of quality and regulatory affairs at the American Health Care Association, the nursing home industry’s main lobbying group.
Gifford told NBC News that the change was not about saving the industry money, but was meant to ensure consistent standards. He said the new fine structure incentivizes nursing homes to report violations and improve resident care.
‘I thought I was completely covered’
After she left the Bishop Care Center nursing home in March, Glenda Moore grew sicker. Over the following weeks, she cycled among her son and daughter-in-law’s home, several emergency rooms and another nursing home an hour away. According to her son and daughter-in-law, she was diagnosed with a bladder infection and pneumonia.
“I don’t want to be a burden on the kids,” Glenda Moore told NBC News in an interview in April. “I had retirement insurance, I had Medicare, I thought I was completely covered. That doesn’t count for anything … I had no idea.”
In May, her family appealed her discharge from the center. At a hearing conducted by the California Department of Health Care Services, the nursing home’s administrator said Glenda Moore had left willingly, according to the state’s summary report.
The state’s hearing officer ultimately found that the facility “failed to meet all of the regulatory-mandated discharge planning requirements.” However, the hearing officer ruled in favor of the nursing home, noting that Glenda Moore agreed to leave and was given paperwork notifying her of her right to appeal Medicare’s noncoverage decision.
By late July, her weight had dropped to about 80 pounds. She was hospitalized, and on Aug. 2 she died from acute renal failure and cardiopulmonary arrest.
Her family believes she wouldn’t have become so sick if she had been able to stay in the Bishop Care Center for a few weeks longer, until she was more stable.
Jamie Moore said her mother-in-law’s experience has changed the way she thinks about her own retirement.
“I never thought about it much until now. It scares the crap out of me,” she said. “The system is the system. What are you doing to do?”
Washington, DC – U.S. Representatives Linda T. Sánchez (D-CA) and Jan Schakowsky (D-IL) today introduced the Fairness in Nursing Home Arbitration Act to protect the legal rights of elderly Americans. This legislation would prohibit long-term care facilities from requiring or soliciting residents to enter into pre-dispute, mandatory, binding arbitration agreements.
Rep. Linda Sánchez – “This legislation is about putting patients and families first. The decision to transfer a parent or loved one to a long-term care facility is heart-wrenching. I still remember the day we moved my late father into a nursing home. My family and I were focused on the quality of care and range of services the facility would provide him. We were not focused on the language in the agreement that would limit his rights should something go wrong. Under this bill, families will no longer have to worry about losing their right to a day in court. I urge my colleagues to join me in protecting one of our most vulnerable groups in society, the elderly.”
Jan Schakowsky – “Every day, families bring their loved ones to nursing homes all around the country, certain that they will receive the high-quality care and comfort they need. Unfortunately, many of them unknowingly sign away their right to seek justice and are forced into an often unfair arbitration process should a nursing home resident be harmed. Whether it’s willful neglect or a simple accident, residents and their families should have the right to seek justice in front of a judge and jury, and not be locked into a conference room for forced arbitration.”
National Association of Local Long Term Care Ombudsman (NALLTCO)
National Association of Social Workers (NASW)
National Association of State Long-Term Care Ombudsman Programs (NASOP)
National Consumer Voice for Quality Long-Term Care
Service Employees International Union (SEIU)
Rep. Sánchez first introduced the Fairness in Nursing Home Arbitration Act in the 110th Congress after hearing numerous testimony during her time as Chairwoman of the House Judiciary Committee’s Subcommittee on Commercial and Administrative Law.
AARP Senior Vice President of Government Affairs Bill Sweeney – “When individuals and their families make the difficult decision to enter a nursing home, often in emergency situations, they should not be forced to sign away their legal rights through mandatory arbitration agreements. AARP supports the Fairness in Nursing Home Arbitration Act because it would prohibit these fundamentally unfair contract provisions. In the heartbreaking cases where loved ones in nursing homes are abused or injured, they should not lose access to the judicial system. We thank Representatives Sánchez and Schakowsky for their important work on this issue.”
American Association for Justice CEO Linda Lipsen – “Forced arbitration strips our nation’s most vulnerable citizens of their legal rights when a nursing home corporation’s negligence causes the injury or death of a patient. We applaud Rep. Sánchez for introducing the Fairness in Nursing Home Arbitration Act and ask Congress to act quickly to restore long-term care patients with their constitutional right to be heard by a judge and jury.”
Long Term Care Community Coalition Executive Director Richard J. Mollot – “LTCCC believes pre-dispute arbitration agreements are inherently unfair to residents and families. When a resident enters a facility, they are not likely to be in a position to truly consider what future problems may occur. Most people are overwhelmed by the situation and trust that the nursing home is providing them with paperwork to sign that is both necessary and in the resident’s best interest. Nobody knowingly enters a nursing home expecting that they will be abused or neglected.”
Public Citizen Counsel for Civil Justice and Consumer Rights Remington Gregg – “We thank Rep. Sánchez for being a champion for seniors. If seniors are injured, abused, or otherwise harmed, they and their families should have peace of mind that they will be able to hold corporate wrongdoers accountable in court and receive the justice they deserve.”
Center for Medicare Advocacy Policy Attorney Dara Valanejad – “Too often, nursing home residents and families enter into pre-dispute arbitration agreements in the midst of physical and emotional crises. The Fairness in Nursing Home Arbitration Act of 2019 will ensure that long-term care residents and those in community-based settings are not forced, coerced, or “requested” to waive their right to court proceedings before a dispute even arises. Our nation’s most vulnerable individuals deserve to be protected from these pre-dispute arbitration agreements.”
National Consumer Voice for Quality Long-Term Care Director of Advocacy & Outreach Robyn Grant – “The National Consumer Voice for Quality Long-Term Care thanks Congresswomen Sánchez and Schakowsky for their leadership in protecting nursing home residents and individuals receiving Medicaid-funded home and community -based services from forced pre-dispute arbitration agreements. Such agreements are fundamentally unfair to consumers of long-term services and supports in any setting. They pressure people to decide how to settle a dispute – which could involve gross negligence, abuse, or even death – before a dispute arises and without any information about the dispute. Once signed, the individual loses forever their constitutional right to pursue action in a court of law. These agreements take advantage of consumers at their most vulnerable and stack the deck against them by frequently allow the long-term care provider to select the arbitrator, the rules for the arbitration process, and where the arbitration will be held. But pre-dispute arbitration agreements harm more than the individual who is seeking justice and accountability. Because the agreements usually are confidential, the public, including those looking for a nursing home, will never know the nursing home’s full track record – no matter how bad – because it is hidden. We applaud both Congresswomen for their commitment to ending this shameful practice and upholding the rights of vulnerable individuals in need of care.”
Nursing home residents do not automatically have to sell their homes in order to qualify for Medicaid, but that doesn’t mean the house is completely protected. The state will likely put a lien on the house while the resident is living and attempt to recover the property after the resident has passed away.
Medicaid will not count a nursing home resident’s home as an asset when determining eligibility for Medicaid as long as the resident intends to return home (in some states, the nursing home resident must prove a likelihood of returning home). In addition, the resident’s equity interest in the home must be less than $585,000, with the states having the option of raising this limit to $878,000 (figures are adjusted annually for inflation; these are for 2019).
The equity value of the home is the fair market value minus any debts secured by the home, such as a mortgage or a home equity loan. For example, if your home has a fair market value of $400,000 and an outstanding mortgage of $100,000, the equity value is $300,000. Your equity interest depends on whether you own the home by yourself or with someone else. If you own the home by yourself, your equity interest is the entire equity value. If you own your home jointly with your spouse or someone else, your equity interest is only half of the home’s equity value.
The home equity rule does not apply if the Medicaid applicant’s spouse or a child who is under 21 or is blind or disabled lives in the home.
While the house may not need to be sold in order to qualify for Medicaid, state Medicaid agencies will likely place a lien on any real estate owned by a Medicaid beneficiary during his or her life. The state cannot impose a lien if a spouse, a disabled or blind child, a child under age 21, or a sibling with an equity interest in the house is living in the house.
Once a lien is placed on the property, if the property is sold while the Medicaid beneficiary is living, not only will the beneficiary cease to be eligible for Medicaid due to the cash from the sale, but the beneficiary would have to satisfy the lien by paying back the state for its coverage of care to date. In some states, the lien may be removed upon the beneficiary’s death. In other states, the state can collect on the lien after the Medicaid recipient dies. Check with your attorney to see how your local agency handles this.
Even if the state did not place a lien on the home during the Medicaid beneficiary’s life, the home may still be subject to estate recovery after the Medicaid recipient’s death, again depending on the state.
There are steps you can take to protect your home. Contact your attorney to learn more.
Assisted living seems like the solution to everyone’s worries about old age. It’s built on the dream that we can grow old while being self-reliant and live that way until we die. That all you need is a tiny bit of help. That you would never want to be warehoused in a nursing home with round-the-clock caregivers. This is a powerful concept in a country built on independence and self-reliance.
The problem is that for most of us, it’s a lie. And we are all complicit in keeping it alive.
The assisted living industry, for one, has a financial interest in sustaining a belief in this old-age nirvana. Originally designed for people who were mostly independent, assisted living facilities have nearly tripled in number in the past 20 years to about 30,000 today. It’s a lucrative business: Investors in these facilities have enjoyed annual returns of nearly 15 percent over the past five years — higher than for hotels, office, retail and apartments, according to the National Investment Center for Seniors Housing and Care.
The children of seniors need to believe it, too. Many are working full time while also raising a family. Adding the care of elderly parents would be a crushing burden.
I know this fantasy well. When my parents, who were then in their 70s, were unable to take care of themselves, I bought an apartment in Brooklyn that was big enough to fit them, in addition to my husband and our two young children. But then my husband lost his job in the Great Recession, and we could no longer afford the mortgage.
The only solution I could think of was to move. I took a job in India, where the dollar goes farther, so I could rent an apartment big enough to fit us all and hire helpers to care for my parents and children while my husband and I worked.
Back then, I, too, dreamed about those assisted living facilities. My parents seemed so bored and lonely in my house. And it was hard for us to keep up with their ballooning needs. They grew so enormous that I eventually had to quit my job.
As I struggled to support my parents, assisted living became a private dream for my own old age.
Now that I am back in the United States, I have been thinking about assisted living again. My dad died in 2017, after living with us for nine years, and my 83-year-old mother now lives in New York City with my sister. Would assisted living offer our mother better care and relieve the pressure on my sister, who works full time while raising a young daughter?
Sadly, I’ve discovered the answer is no.
The irony of assisted living is, it’s great if you don’t need too much assistance. If you don’t, the social life, the spalike facilities, the myriad activities and the extensive menus might make assisted living the right choice. But if you have trouble walking or using the bathroom, or have dementia and sometimes wander off, assisting living facilities aren’t the answer, no matter how desperately we wish they were.
“They put their money into the physical plant. It’s gorgeous,” said Cristina Flores, a former home health care nurse who has a Ph.D. in nursing health policy, lectures in the gerontology program at San Francisco State University and runs three small group homes for the elderly.
But when it comes to direct care, the facilities are often lacking. “The way they market everything is, it’s all about autonomy and independence, which are important concepts,” she said. Families and residents don’t realize that these facilities are not designed to provide more than minimal help and monitoring. Even those that advertise “24-hour” monitoring may have someone present round-the-clock on the premises, but may not have sufficient staff to actually monitor and assist the large number of residents.
“People’s defense against something horrible happening is, ‘Well, they have a right to be independent,” she said. “‘Yes, he did walk up the stairs with his walker and fall down and die, but he had a right to do that.’ That’s a horrible defense. You don’t just allow people to do unsafe things.”
Most residents of assisted living need substantially more care than they are getting. Half of those residing in assisted living facilities in the United States are over the age of 85, the Centers for Disease Control reports. And this trend is accelerating. The number of people 85 years of age and older in the United States will nearly triple to about 18 million by 2050, according to the Census Bureau.
“When you say nursing home, people say, ‘Yuk,’” said Eric Carlson, the directing attorney for Justice in Aging, a national advocacy group for low-income older Americans. “When you say assisted living, a lot of people say, ‘That sounds good.’ Nobody realizes the system is broken.” When something bad happens to a resident of an assisted living facility, “They just think it was that facility that was horrible,” he says.
Part of the problem is a lack of regulation. Nursing homes are regulated and inspected and graded for quality to ensure that residents receive adequate care. The federal government does not license or oversee assisted living facilities, and states set minimal rules. Nursing homes are required to have medical directors on staff who review patient medications regularly, while there is usually no such requirement in assisted living.
Not surprisingly, complaints against assisted living facilities are mounting in courts around the country.
In June of last year, Claude Eugene Rogers, an 83-year-old retired Marine, suffered from heatstroke at an assisted living facility in Roseville, near Sacramento. He died a few days later. A state investigation said that he had been left on an outside patio in his wheelchair for one hour and 45 minutes or longer that morning, when local temperatures reached 93 degrees Fahrenheit. The state in July moved to revoke the facility’s license to operate, which it is fighting to retain, while denying any wrongdoing.
His family was devastated. They had chosen assisted living when his dementia grew more severe and his wife was no longer able to care for him at home. “We thought it was a nice place and the people there could provide great care and the other residents there would be friends for my dad,” his son, Jeffrey Rogers, told me.
Bonnie Walker, 90, who also suffered from dementia, wandered undetected out of an assisted living facility in South Carolina sometime after midnight in July 2016. According to a lawsuit, her remains were found eight hours later in a pond nearby, and her pacemaker was recovered from inside an alligator that lived on the property.
Her family, after struggling to care for her at home, had taken her to assisted living believing she would be safer. They visited her daily and took her home on Sundays. “My grandma deserved to have us there” when she died, her granddaughter, Stephanie Weaver, told me, “not to go the way she did.”
Ruth Gamba, 96, fell three times during her first month in a memory care unit of an assisted living facility in Fremont, Calif., her family said in a lawsuit against the facility. Memory care units are supposed to provide closer monitoring and care of patients with dementia. But in Mrs. Gamba’s most recent fall, she broke her hip and fractured her toes, her family said in the lawsuit.
Her son, Peter Gamba, a television editor in Los Angeles, told me that he and his sister moved their mother into the facility because it promised round-the-clock monitoring. More than 40 percent of people in assisted living have some form of dementia. Construction of memory care units in assisted living facilities is the fastest-growing segment of senior care. But assisted living, even memory care units, often aren’t the right place for people with dementia. In most states, there’s no requirement that these units be staffed with enough people or that they be properly trained.
Assisted living has a role to play for the fittest among the elderly, as was its original intent. But if it is to be a long-term solution for seniors who need substantial care, then it needs serious reform, including requirements for higher staffing levels and substantial training.
That will raise prices, and assisted living already costs between about $4,800, on average, each month, and nearly $6,500 if dementia care is needed, according to the National Investment Center, a group that analyzes senior housing reports.
Perhaps the United States can learn from Japan, which is a few decades ahead of us in grappling with how to care for its rapidly aging population. Japan created a national long-term-care insurance system that is mandatory. It is partly funded by the government but also by payroll taxes and additional insurance premiums charged to people age 40 and older. It is a family-based, community-based system, where the most popular services are heavily subsidized home help and adult day care. Japanese families still use nursing homes and assisted living facilities, but the emphasis is on supporting the elder population at home.
We need to let go of the ideal of being self-sufficient until death. Just as we don’t demand that our toddlers be self-reliant, Americans need to allow the reality of ourselves as dependent in our old age to percolate into our psyches and our nation’s social policies. Unless we face up to the reality of the needs of our aging population, the longevity we as a society have gained is going to be lived out miserably.
As Mr. Gamba told me, “There’s going to be lots and lots of old people dying left and right with nobody attending to them.”
And there’s a pretty good chance, I believe, that among those languishing there will be you and me.
(An update on the following Next Avenue story, which appeared in March 2019)
On June 3, 2019, Sen. Bob Casey (D-Pa.) and Sen. Pat Toomey (R-Pa.) released a report called Families’ and Residents’ Right to Know: Uncovering Poor Care in America’s Nursing Homes. It included a list of nearly 400 nursing homes around the country where inspectors found serious ongoing health, safety or sanitary problems but whose names had not been publicly disclosed by the government. These nursing homes, with a “persistent record of poor care” do not appear on Medicare’s Nursing Home Compare site with a yellow triangle icon resembling a “caution” sign the way other homes, in the government’s Special Focus Facility program, do. The reason, according to the report by Senators Casey and Toomey:”a result of limited resources” at the Centers for Medicare and Medicaid Services.
You probably saw the viral Facebook post by the Texas man who said he planned to move into a Holiday Inn rather than a nursing home because it would cost less. That’s a radical idea, and not an especially smart one. But with the average annual cost of a private room in a nursing home topping $100,000, according to Genworth, it pays to do diligent research to find a facility for your parent. And that means looking at nursing home ratings.
This type of detective work can be especially helpful if your mom or dad live in a rural part of the United States. As The New York Times reported this week, nursing homes in those places are increasingly shutting down. More than 400 rural nursing homes have closed or merged over the past decade, the Times said. That means families are being forced to expand their search for nursing homes just to find some.
What Is a Nursing Home?
Before I describe the Medicare and Yelp rating systems, a brief definition:
Nursing homes generally provide nursing care, meals, assistance with everyday activities and rehab services.
Assisted living facilities, by contrast, focus on helping residents with daily living activities and don’t offer as much medical care.
Medicare and Yelp Ratings of Nursing Homes
Both Medicare and Yelp rate nursing homes (sometimes called skilled nursing facilities) on a one-to-five-star scale. Medicare’s ratings of facilities it regulates are in the Nursing Home Compare part of the Medicare.gov site. The ones on Yelp show up if you do search for them with that online service.
But the two types of ratings are done very differently. So much so that Anna Rahman, an assistant professor at the USC Leonard Davis School of Gerontology who has studied them, recommends reading the Medicare reviews as well as the Yelp reviews to get a complete picture.
Rahman and her fellow researchers looked at 51 Yelp-rated nursing homes in California; they previously reviewed the Nursing Home Compare tool.
“We found the Yelp scores did not align well with the scores on Nursing Home Compare,” Rahman told me. “There are lots of possible reasons.”
Why the 2 Types of Nursing Home Ratings Are So Different
The biggest one: Medicare’s Nursing Home Compare star ratings measure facilities based on quantifiable data. Yelp’s reviews are more personal and qualitative. Rahman and her colleagues found that most Yelp reviews commented on “intangibles” like staff attitudes and responsiveness.
Put another way, Medicare can help show how well a nursing home is run and Yelp can show what nursing home residents, or their families, say it’s like to live there.
The Medicare Nursing Home Compare ratings are geographically comprehensive. When I looked for facilities near where I live in New Jersey, I received 160 ratings. (You can modify your search by number of miles, the name of a nursing home, star ratings and whether the facility accepts Medicare or Medicaid.)
By contrast, it’s harder to find many Yelp ratings for a particular area. And even if a nursing home is rated on Yelp, odds are there won’t be many reviews. When I did a Yelp search for nursing homes near me (I found 22), most had fewer than five consumer ratings. They rarely had more than eight.
How the Nursing Home Ratings Are Done
Nursing Home Compare gets its data from three sources: the federal government’s health inspection database; a national database of resident clinical data and Medicare claims data.
Medicare requires on-site inspections every 12 to 15 months. The nursing homes themselves typically report the staffing and quality measures. Critics believe some nursing homes game them.
To arrive at a star rating for a nursing home, Medicare starts with the health inspections rating, then adds a star for a good staffing rating or subtracts one for a one-star health inspections rating. Next, Medicare adds a star if the quality of resident care rating is five stars and subtracts one if that rating is just one star. And if the health inspections rating is just one star, the overall Nursing Home Compare rating can’t be upgraded by more than one star based on the staffing and quality of resident care ratings.
At Yelp, anyone can post a review based on any criteria he or she chooses to use.
When Rahman and her fellow researchers compared Medicare and Yelp nursing home ratings, they often found four or five stars on one but not the other. That’s not because one of the services is wrong; it’s that the raters rate different things.
An Expert’s Take on the Medicare and Yelp Ratings
Rahman is “frustrated” that Medicare has no consumer voice in its ratings system “even though we are supposedly moving to a patient-centric, family-directed health care system.”
Her advice when using its ratings: look for nursing homes that fare well in each of Medicare’s three broad measures: health inspections, quality of resident care and staffing.
“If I saw that a nursing home got five stars for quality measures, but two on staffing and two on health inspection, I’d move on,” she says. “I’d assume they were lying about quality. You can’t get great quality care when your staffing score sucks. You need staff to provide that care.”
Rahman also says the Yelp platform “has its own set of flaws,” although “they allow well-intended consumers to express an opinion about services they have been receiving.” But, she adds, family members often write these reviews. “And [loved ones who are] the residents, don’t necessarily agree. They often disagree.”
Merging Medicare’s Nursing Home Ratings With Yelp’s
She thinks “a nice solution” would be if Medicare and Yelp collaborated, because “people would like a Yelp-like score” on Nursing Home Compare.
“I don’t think it will happen,” says Rahman.
So for now, if not forever, check out nursing home ratings from Medicare and Yelp. Then be sure to visit facilities you’re considering to see for yourself. And don’t be shy about asking questions of administrators or staff (the Medicare Nursing Home Checklist can help).
With the steep cost of nursing homes, and often an urgency to locate a facility, you can’t afford to be.
WASHINGTON — One of the largest studies on out-of-pocket costs for nursing home care finds prices are high and rising faster than other medical care and consumer prices, reports a team of health policy researchers.
Their study, published in Medical Care Research and Review, reviews nursing home prices in eight states between 2005-2010 and uncovers out-of-pocket prices that increase significantly beyond normal inflation and inflation in medical care prices.
For example, annual out-of-pocket costs for nursing home care increased as high as 30% in California during the study period.
The study also finds substantial price variation across states. In 2010, at an average of $131 a day (about $47,800 annually), Texas had the least expensive nursing home out-of-pocket cost, while New York State, at $334 daily ($121,910 a year) had the most expensive.
The study also finds different prices between nursing homes after adjusting for staffing levels and geographical difference.
The for-profit nursing home chains charged the lowest prices and nonprofit nursing home chains provided the most expensive care. The price differential between for-profit chains and nonprofit chains is about $4,160 annually, or equivalent to 6.2% of the average price of for-profit nursing homes. However, there is no statistically significant difference in prices between for-profit and nonprofit independently operated nursing homes.
The researchers also find that areas with higher market concentration of nursing homes leads to higher prices. Nursing homes that are near capacity limit also charge more than nursing homes that have more rooms available.
The study aims to provide more transparency of the out-of-pocket prices of nursing home care. “Not many people have those kind of resources, and so it is important to understand how fast prices grow and how they vary,” says the study’s lead author, Sean Huang, PhD, MA, assistant professor in the Department of Health Systems Administration at the School of Nursing & Health Studies at Georgetown University Medical Center.
Typically, individuals in need of nursing home care who do not have Medicaid, and usually pay out of pocket until they run out of money. Then they are eligible for Medicaid, Huang says. Only a small fraction of nursing home residents have private insurance, such as long-term care insurance, that helps cover the costs.
This study used a unique dataset on nursing home prices from 2005-2010 across eight states. “Very few people have studied this topic, so it required building the largest dataset on nursing home prices to date,” Huang says. “This kind of information is very valuable to potential consumers of this care.”
Study co-authors include Richard A. Hirth, PhD, from the University of Michigan,
Jane Banaszak-Holl, PhD, from Monash University in Australia, and Stephanie Yuan, BA, from Georgetown University Medical Center.
The study was partly supported by a grant from the U.S. Social Security Administration, funded as part of the Retirement Research Consortium through the University of Michigan Retirement Research Center Award RRC08098401.
Today, the Centers for Medicare & Medicaid Services (CMS) announced a final rule, “Medicare and Medicaid Programs; Revision of Requirements for Long-Term Care Facilities: Arbitration Agreements” (CMS-3342-F). The final rule revises the requirements for arbitration agreements when they are used by long-term care (LTC) facilities to resolve disputes with their residents. Provisions in this rule establish substantial protections for residents and their representatives and ensure transparency in the arbitration process in LTC facilities, also known as “nursing homes”. The rule is part of the agency’s five-part approach to ensuring a high-quality nursing home system that focuses on strengthening requirements for nursing homes, working with states to enforce statutory and regulatory requirements, increasing transparency of nursing home performance, and promoting improved health outcomes for nursing home residents.
This final rule repeals the prohibition on LTC facilities entering into pre-dispute, binding arbitration agreements with their residents, as proposed. However, this final rule includes protections of residents’’ rights by prohibiting LTC facilities from requiring residents to sign binding arbitration agreements as a condition of admission to, or as a requirement to continue to receive care at, that facility. It strengthens the transparency of arbitration agreements and the arbitration process with specific requirements for the LTC facility, such as the requirement that LTC facilities that resolve a dispute with a resident through arbitration retain copies of the signed arbitration agreement and the final arbitrator’s decision for five years and make such documents available for review by CMS or its designee. It also protects residents’ rights to make informed choices about their health care by ensuring that residents or their representatives have the right to understand what the arbitration agreement says and the consequences of signing the agreement.
On October 4, 2016, CMS published in the Federal Register a final rule titled, “Reform of Requirements for Long-Term Care Facilities” (81 FR 68688) (2016 final rule). The rule banned binding pre-dispute arbitration agreements in LTC facilities. In 2016, the American Health Care Association (AHCA) and a group of affiliated nursing homes filed a complaint in the U.S. District court for the Northern District of Mississippi seeking a preliminary and permanent injunction enjoining CMS from enforcing the ban on LTC facilities entering into pre-dispute, binding arbitration agreements with their residents. After the court preliminarily enjoined the enforcement of that regulation, the agency determined that further analysis of the rule was warranted. On December 9, 2016, CMS issued a nationwide instruction to State Survey Agency Directors, directing them not to enforce the 2016 final rule’s prohibition of pre-dispute, binding arbitration provisions.
On June 8, 2017, CMSCMS published a proposed rule, “Medicare and Medicaid Programs; Revisions of Requirements for Long-Term Care Facilities: Arbitration Agreements” (82 FR 26649) in the Federal Register. The agency received over 1,000 public comments on the proposed rule from a number of stakeholders, including nursing homes and beneficiary advocates. That proposed rule focused on the transparency surrounding the arbitration process and proposed the following:
The prohibition on LTC facilities entering into pre-dispute, binding arbitration agreements with their residents would be repealed.
All agreements for binding arbitration must be in plain language.
If signing the agreement for binding arbitration is a condition of admission into the facility, the language of the agreement must be in plain writing and in the admissions contract.
The agreement must be explained to the resident and his or her representative in a form and manner they understand, including that it must be in a language they understand.
The resident must acknowledge that he or she understands the agreement.
The agreement must not contain any language that prohibits or discourages the resident or anyone else from communicating with federal, state, or local officials, including federal and state surveyors, other federal or state health department employees, or representatives of the State Long-Term Care Ombudsman.
If the facility resolves a dispute with a resident through arbitration, it must retain a copy of the signed agreement for binding arbitration and the arbitrator’s final decision so it can be inspected by CMS or its designee.
The facility must post a notice regarding its use of binding arbitration in an area that is visible to both residents and visitors.
Final Rule Revisions to Arbitration Requirements
After careful consideration of the public comments, CMS is modifying our proposed changes. We are not finalizing the requirements for plain language in the arbitration agreements and that the facility post a notice regarding its use of binding arbitration. We believe these proposed requirements are unnecessary due to other requirements finalized in this rule. In addition, we are retaining some of the requirements finalized in the 2016 rule. We are finalizing following provisions. An LTC facility must:
Not require that a resident or his or her representative sign an agreement for binding arbitration as a condition of admission to, or as a requirement to continue to receive care at, the facility. This must be explicitly stated in the agreement to ensure. This ensures that no resident or his or her representative will have to choose between the resident obtaining the skilled nursing care he or she needs and signing an agreement for binding arbitration.
Ensure that the agreement is explained to the resident or his or her representative in a form and manner that he or she understands, including in a language that he or she understands, and that the resident or his or her representative acknowledges that he or she understands the agreement. These two requirements ensure that the arbitration agreement is transparent and the resident or his or her representative understand what he or she is agreeing to.
Ensure that the agreement provides for the selection of a neutral arbitrator agreed upon by both parties and a venue that is convenient to both parties. These requirements helps to ensure that the arbitration process is fair to both parties, especially the residents.
Ensure that the agreement does not contain any language that prohibits or discourages the resident or anyone else from communicating with federal, state, or local officials, including Federal or state surveyors, other federal or state health department employees, or representative of the Office of the State Long-Term Care Ombudsman. This protects the resident and his or her representative from any undue influence by the LTC facility to not discuss the circumstances surrounding a concern, complaint or grievance.
Retain copies of the signed agreement for binding arbitration and the arbitrator’s final decision for 5 years after the resolution of any dispute resolved through arbitration with residents, and make these documents available for inspection upon request by CMS or its designee. This will ensure that CMS will be able to obtain information on how the arbitration process is being used by LTC facilities, and on the outcomes of the arbitrations for residents.
Once a resident is settled in a nursing home, being told to leave can be very traumatic. Nursing homes are required to follow certain procedures before discharging a resident, but family members often accept the discharge without questioning it. Residents can fight back and challenge an unlawful discharge.
According to federal law, a nursing home can discharge a resident only for the following reasons:
The resident’s health has improved
The resident’s needs cannot be met by the facility
The health and safety of other residents is endangered
The resident has not paid after receiving notice
The facility stops operating
Unfortunately, sometimes nursing homes want to get rid of a resident for another reason–perhaps the resident is difficult, the resident’s family is difficult, or the resident is a Medicaid recipient. In such cases, the nursing home may not follow the proper procedure or it may attempt to “dump” the resident by transferring the resident to a hospital and then refusing to let the him or her back in.
If the nursing home transfers a resident to a hospital, state law may require that the nursing home hold the resident’s bed for a certain number of days (usually about a week). Before transferring a resident, the facility must inform the resident about its bed-hold policy. If the resident pays privately, he or she may have to pay to hold the bed, but if the resident receives Medicaid, Medicaid will pay for the bed hold. In addition, if the resident is a Medicaid recipient the nursing home has to readmit the resident to the first available bed if the bed-hold period has passed.
In addition, a nursing home cannot discharge a resident without proper notice and planning. In general, the nursing home must provide written notice 30 days before discharge, though shorter notice is allowed in emergency situations. Even if a patient is sent to a hospital, the nursing home may still have to do proper discharge planning if it plans on not readmitting the resident. A discharge plan must ensure the resident has a safe place to go, preferably near family, and outline the care the resident will receive after discharge.
If the nursing home refuses to readmit a patient or insists on discharging a resident, residents can appeal or file a complaint with the state long-term care ombudsman. The resident should appeal as soon as possible after receiving a discharge notice or after being refused readmittance to the nursing home. You can also require the resident’s doctor to sign off on the discharge. Contact your attorney to find out the best steps to take.