New York’s true nursing home death toll cloaked in secrecy

By BERNARD CONDON, MATT SEDENSKY and MEGHAN HOYER

FILE - In this June 15, 2020, file photo, New York Gov. Andrew Cuomo removes a mask as he holds a news conference in Tarrytown, N.Y. New York’s coronavirus death toll in nursing homes, already among the highest in the nation, could actually be a significant undercount. Unlike every other state with major outbreaks, New York only counts residents who died on nursing home property and not those who died in hospitals. (AP Photo/Mark Lennihan, File)

 NEW YORK (AP) — Riverdale Nursing Home in the Bronx appears, on paper, to have escaped the worst of the coronavirus pandemic, with an official state count of just four deaths in its 146-bed facility.

The truth, according to the home, is far worse: 21 dead, most transported to hospitals before they succumbed. 

“It was a cascading effect,” administrator Emil Fuzayov recalled. “One after the other.”

New York’s coronavirus death toll in nursing homes, already among the highest in the nation, could actually be a significant undercount. Unlike every other state with major outbreaks, New York only counts residents who died on nursing home property and not those who were transported to hospitals and died there. 

That statistic could add thousands to the state’s official care home death toll of just over 6,600. But so far the administration of Democratic Gov. Andrew Cuomo has refused to divulge the number, leading to speculation the state is manipulating the figures to make it appear it is doing better than other states and to make a tragic situation less dire.

“That’s a problem, bro,” state Sen. Gustavo Rivera, a Democrat, told New York Health Commissioner Howard Zucker during a legislative hearing on nursing homes earlier this month. “It seems, sir, that in this case you are choosing to define it differently so that you can look better.” 

How big a difference could it make? Since May, federal regulators have required nursing homes to submit data on coronavirus deaths each week, whether or not residents died in the facility or at a hospital. Because the requirement came after the height of New York’s outbreak, the available data is relatively small. According to the federal data, roughly a fifth of the state’s homes reported resident deaths from early June to mid July — a tally of 323 dead, 65 percent higher than the state’s count of 195 during that time period.

Even if half that undercount had held true from the start of the pandemic, that would translate into thousands more nursing home resident deaths than the state has acknowledged.

Another group of numbers also suggests an undercount. State health department surveys show 21,000 nursing home beds are lying empty this year, 13,000 more than expected — an increase of almost double the official state nursing home death tally. While some of that increase can be attributed to fewer new admissions and people pulling their loved ones out, it suggests that many others who aren’t there anymore died.

However flawed New York’s count, Cuomo has not been shy about comparing it to tallies in other states.

Nearly every time Cuomo is questioned about New York’s nursing home death toll, he brushes off criticism as politically motivated and notes that his state’s percentage of nursing home deaths out of its overall COVID-19 death toll is around 20%, far less than Pennsylvania’s 68%, Massachusetts’ 64% and New Jersey’s 44%.

“Look at the basic facts where New York is versus other states,” Cuomo said during a briefing Monday. “You look at where New York is as a percentage of nursing home deaths, it’s all the way at the bottom of the list.”

In another briefing last month, he touted New York’s percentage ranking as 35th in the nation. “Go talk to 34 other states first. Go talk to the Republican states now — Florida, Texas, Arizona — ask them what is happening in nursing homes. It’s all politics.”

Boston University geriatrics expert Thomas Perls said it doesn’t make sense that nursing home resident deaths as a percentage of total deaths in many nearby states are more than triple what was reported in New York.

“Whatever the cause, there is no way New York could be truly at 20%,” Perls said.

A Cuomo spokesman did not respond to repeated requests for comment. New York’s Department of Health said in a statement that it has been a leader in providing facility-specific information on nursing home deaths and “no one has been clearer in personalizing the human cost of the pandemic.”

A running tally by The Associated Press shows that more than 68,600 residents and staff at nursing homes and long-term facilities across the nation have died from the coronarivus, out of more than 164,000 overall deaths.

For all 43 states that break out nursing home data, resident deaths make up 44% of total COVID deaths in their states, according to data from the Kaiser Family Foundation. Assuming the same proportion held in New York, that would translate to more than 11,000 nursing home deaths.

In this April 17, 2020, file photo, emergency medical workers arrive at Cobble Hill Health Center in the Brooklyn borough of New York.

To be sure, comparing coronavirus deaths in nursing homes across states can be difficult because of the differences in how states conduct their counts. New York is among several states that include probable COVID-19 deaths as well as those confirmed by a test. Some states don’t count deaths from homes where fewer than five have died. Others don’t always give precise numbers, providing ranges instead. And all ultimately rely on the nursing homes themselves to provide the raw data.

“Everybody is doing it however they feel like doing it. We don’t have very good data. It’s just all over the place, all over the country,” said Toby Edelman of the Center for Medicare Advocacy, a nonprofit representing nursing home residents.

New York health chief Zucker explained during the legislative hearing that New York only counts deaths on the nursing home property to avoid “double-counting” deaths in both the home and the hospital. And while he acknowledged the state keeps a running count of nursing home resident deaths at hospitals, he declined to provide even a rough estimate to lawmakers.

“I will not provide information that I have not ensured is absolutely accurate,” Zucker said. “This is too big an issue and it’s too serious an issue.”

Zucker promised to provide lawmakers the numbers as soon as that doublechecking is complete. They are still waiting. The AP has also been denied access to similar nursing home death data despite filing a public records request with the state health department nearly three months ago.

Dr. Michael Wasserman, president of the California Association of Long Term Care Medicine, said it is unethical of New York to not break out the deaths of nursing home residents at hospitals. “From an epidemiological and scientific perspective, there is absolutely no reason not to count them.”

Nursing homes have become a particular sore point for the Cuomo administration, which has generally received praise for steps that flattened the curve of infections and New York’s highest-in-the-nation 32,787 overall deaths.

A controversial March 25 order to send recovering COVID-19 patients from hospitals into nursing homes that was designed to free up hospital bed space at the height of the pandemic has drawn withering criticism from relatives and patient advocates who contend it accelerated nursing home outbreaks.

Cuomo reversed the order under pressure in early May. And his health department later released an internal report that concluded asymptomatic nursing home staffers were the real spreaders of the virus, not the 6,300 recovering patients released from hospitals into nursing homes.

But epidemiologists and academics derided the study for a flawed methodology that sidestepped key questions and relied on selective stats, including the state’s official death toll figures.

“We’re trying to find out what worked and what didn’t work and that means trying to find patterns,” said Bill Hammond, who works on health policy for the nonprofit Empire Center think tank. “You can’t do that if you have the wrong data.”
___
 

AP reporters Jim Mustian and Marina Villeneuve, and investigative researcher Randy Herschaft contributed to this report.

Full Article & Source:
New York’s true nursing home death toll cloaked in secrecy

DATA DEBATE: When it comes to the coronavirus, nursing home secrecy frustrates family members

By Trevor Ballantyne

Some nursing homes have refused to divulge the number of people who have died from the coronavirus while they lived or worked there.

Each week, the state Department of Public Health releases information showing which nursing homes have coronavirus outbreaks.

The data the state releases is limited, showing only the general ranges of COVID-19 infections at skilled-nursing and long-term care facilities. More than 30 cases at Casa de Ramana in Framingham. More than 30 cases at Westborough HealthCare in Westborough. More than 30 cases at Sudbury Pines Extended Care in Sudbury.

When actual numbers are released, they are often far higher than the maximum range suggests. Briarwood in Needham is listed as having more than 30 cases, which is the highest range offered. But a spokesperson for the skilled-nursing facility said the actual number is 91 residents and staff who have tested positive since late March.

Conspicuously absent from the data is the number of coronavirus-related deaths at individual nursing homes.

“Due to patient confidentiality policies, we are not reporting the number of deaths by facility but are including them in aggregate,” a DPH spokesperson told the Daily News on Monday.

As of Monday, the state logged 3,574 deaths in skilled-nursing and long-term care facilities, 60.9% of Massachusetts’ total death count. More than 30% of nursing home deaths have been reported in just the last two weeks.

But other states, including Connecticut and New York, are releasing the specific number of deaths at individual nursing homes.

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The New Hampshire Department of Health and Human Services releases both the number of cases and fatalities recorded at specific long-term care facilities on a weekly basis. As of Monday, 79.6% - 134 of 172 - of all deaths in the state had been reported at long-term care facilities.

“Our goal is to release as much information as possible in order to protect public health, while taking care to safeguard the private health information of individuals,” said Kathy Remillard, public information officer for the state’s health department. “New Hampshire releases data during public health outbreaks when that information is necessary to help our citizens make informed decisions about their health.”

Numbers not personal

A bill being debated by Massachusetts lawmakers would require the state Department of Public Health to release exact case numbers and exact death tolls by nursing home - data the agency already collects - to the public.

A senior Senate official who worked on the bill but did not want to be named told the Daily News last week that lawmakers believe the state DPH could release the specific number of COVID-19 cases and COVID-19-related deaths by nursing home without violating privacy laws.

Some data, including certain demographic information, could be a privacy concern, the official said, but case counts and death tolls by nursing facility should be public.

“When you’re talking about numbers, you’re not getting into personal identifying information,” the official said.

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If the bill becomes law, which seems likely, the state DPH will be required to report to lawmakers within two weeks any challenges the agency faces with reporting the data.

“So if they’re having a problem with posting this number because of privacy laws, they’re going to have to put that in that report and clearly spell that out for the Legislature,” the official said.

State Sen. Patricia Jehlen, D-Somerville, is one lawmaker pushing for the release of nursing home death tolls, but she told the Daily News last week that the bill is an unnecessary delay. Gov. Charlie Baker could order the release of the data now, she said.

“They have the numbers,” Jehlen said on Wednesday. “They could be making a difference in how we act in nursing homes and assisted living and in the community, but that information isn’t available and it is extraordinarily frustrating.”

Case ranges, as published, “mean nothing,” Jehlen said, adding that privacy laws should not be a barrier to releasing the number of fatalities at individual nursing homes.

“I do not know whose privacy is invaded,” Jehlen said. “In the bill, it says if anything was in contravention with HIPAA, or any other privacy law, that the department could redact it or they could report it in a different way.”

• ‘They count on us.’ Health-care workers at nursing homes face crush of challenges as coronavirus cases spiral

Wednesday’s report from the COVID-19 Command Center shows that, for at least at two state facilities, privacy laws are not a concern when it comes to releasing specific case numbers and death tolls.

In that report, the state lists several specific statistics about the coronavirus outbreak at the Holyoke Soldiers’ Home, which has attracted national attention for the mounting death toll there.

According to Wednesday’s report, 89 Holyoke Soldiers’ Home residents have died, 74 who tested positive for the coronavirus, 14 who tested negative. The COVID-19 status of one person is unknown.

The state also reported that 77 current Holyoke Soldiers’ Home residents have tested positive for the virus, 58 residents have tested negative, and zero residents have pending test results. The report even went so far as to list the current location of each resident (104 are on-site, 31 are off-site, all but one at a dedicated skilled nursing unit at Holyoke Medical Center).

The report also lists specific case and fatality numbers for the Chelsea Soldiers’ Home, where 30 resident veterans who tested positive for the coronavirus had died as of Wednesday.

Information like that is crucial for families trying to make decisions about their loved ones’ care, Jehlen said.

“I have at least one constituent who is trying to decide if she wants to bring her mother home. When she knows what it is like inside the building, it is easier for her to make that decision,” Jehlen said.

On April 6, the state Department of Public Health reminded long-term care facilities to use the Health Care Facility Reporting System (HCFRS) to report any deaths presumed or confirmed to be related to COVID-19. From there, municipal health departments can access the numbers through an online portal.

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The Daily News requested the number of deaths at each of the state’s nursing homes from the state Department of Public Health on May 18, and will report on the agency’s response.

Reporting requirements

CDC reporting rules announced on May 6 require the nation’s 15,000 nursing facilities to report COVID-19 data to the federal government, including the specific number of fatalities.

“All of the information we are asking for will be nationally available,” Jehlen pointed out. “There is no reason for the governor not to have done it by now.”

Because the state does not publish the number of deaths at specific facilities, Massachusetts residents usually only learn about fatalities at skilled-nursing and long-term care facilities that choose to divulge their death tolls to family members or to the media.

Ron Doty, administrator at Marlborough Hills Rehabilitation & Health Care Center in Marlborough, told the Daily News on May 15 that 21 residents and one employee of the skilled-nursing facility have died after contracting the coronavirus. At that time, 70% of Marlborough’s coronavirus-linked deaths occurred at Marlborough Hills.

Sharing the number of people who have died at Marlborough Hills is difficult, Doty said. But he thinks the information should be shared.

“I don’t want to talk about it,” Doty said. “I definitely don’t want to talk about losing a member of our family here that’s been working to keep these folks safe, but at the same time, it’s a part of it. It’s a metric that should be looked at and reviewed and measured and communicated.”

Other nursing homes have taken a different tack, refusing to divulge the number of people who have died from the coronavirus while living or working there.

In response to multiple Daily News inquiries, Casa de Ramana in Framingham declined to share the number of people who have died there after contracting the coronavirus.

“As is consistent with all of our communication, the privacy of our residents, families and staff will be respected,” a statement emailed to the Daily News read. “As always, our first priority is the health and well-being of the vulnerable population that we care for.”

• Mass. lawmakers want the DPH to release report coronavirus cases and fatalities at prisons, jails, long-term care facilities and nursing homes

Framingham Health Director Sam Wong also declined to share how many people have died at Casa de Ramana specifically. Framingham has released the number of deaths at the city’s nursing homes in aggregate, but the health department has not released the number of deaths per facility.

Wong said that if the state Department of Public Health began releasing the specific number of deaths at each facility, or even the specific number of cases at each facility, he would do the same.

“We follow their lead,” he told the Daily News.

On May 19, Shelley Buma, a lifelong resident of Whitinsville, an unincorporated village in Northbridge, emailed her local health department. She wanted to know how many residents of the town’s skilled-nursing and long-term care facilities had died.

The question was personal. Buma’s aunt, 88-year-old Irene VandenAkker, is a resident of St. Camillus Health Center in Northbridge. As her cognitive health declined, the close-knit family eventually determined that VandenAkker needed to move out of her longtime home, across the street from the homes of her three adult sons, and into a skilled nursing facility. She moved into St. Camillus in January.

‘The call’

It was a tough decision. VandenAkker was worried she would be cut off from her children, her grandchildren and her sister, Buma’s mother. The family assured her they would visit her frequently, and they did, until nursing homes across the state shut their doors to visitors in March as the virus spread.

“Things were happening throughout March and April, and we’re just all holding our breath,” Buma remembered. “And then the call.”

On May 6, St. Camillus notified Irene’s family that she had tested positive for the coronavirus. From there, the family continued to receive robocalls from the nursing home that listed the number of positive residents and the number of positive staff, but made no mention of how many people had died from the virus.

Irene’s son Keith VandenAkker told the Daily News that he has learned from friends that residents have died at St. Camillus, but he hasn’t received any formal notification of the deaths from the nursing home. The Daily News reached out to St. Camillus and but hasn’t received a response.

The public has a right to know how many people have died from COVID-19 at the state’s nursing homes, VanderAkker said.

“You don’t like to hear them sometimes, but you can’t avoid facts, and I think in a pandemic of this level, we need to know the facts,” he said. “Things can’t be hidden. If it is this deadly and it is this serious, the public needs to know. Facts can be ugly, but you can’t shy away from the facts.”

Map of virus infections/deaths in nursing homes by state

 

After Irene VanderAkker was diagnosed, Buma began researching how the coronavirus was affecting the state’s nursing homes. She was shocked to learn that data showing how many residents had died at St. Camillus, and other nursing homes, from COVID-19 was unavailable. She reached out to state lawmakers who offered little help, and then to her local health department.

The response she received upset her.

“That is not being tracked at the local level – you can check out the MDPH website for their data – link provided below,” an administrator for the Northbridge Board of Health wrote.

When she got that email, Buma already knew the state DPH website would be no help.

“Now that I know that DPH has the information and is keeping it from me, I’m more infuriated,” Buma told the Daily News. “No privacy issues are at stake here. That’s laughable. That’s a sham.”

One day, Buma might have to decide if her mother, Irene’s sister, needs additional care. If that day comes, Buma said, she wants to know how the nursing homes she considers fared during the pandemic.

“If that’s what’s needed, we have a right to know which homes are better able to control infection than others so we can make an informed decision,” Buma said. “In this heavily regulated, heavily subsidized industry, I am finding out that we are completely in the dark. Not only are we locked out from our loved ones, we’re locked out from the data. You get our money. We don’t get the data. It’s so wrong.”

On Friday, Buma, who has worked to get the information from other sources since her aunt was diagnosed, emailed the Daily News to say that St. Camillus staff informed her that 14 people have died there since May 3.

Doty, the administrator at Marlborough Hills, said he understands why some nursing facilities haven’t been transparent with the number of deaths they’ve sustained.

“Maybe they don’t want the attention or they don’t want the ramifications that could possibly unfold because of divulgence of information like that,” Doty said. “It could be the path of least resistance.”

But Doty thinks it is important for the public to understand how many people are dying at the state’s skilled-nursing and long-term care facilities.

″(Deaths are a metric) to measure the significance, the importance, the severity,” Doty said. “Like, people, stay home. This isn’t a joke. This is not the flu. This is killing people. Start taking it seriously and stop saying this is a government thing. I’ve heard it all and it just makes me sick because I see the folks that are flat out on 10 liters of oxygen here, trying to get their lung capacity back.”

Jehlen said death tolls are also important in terms of accountability.

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She believes Massachusetts was slow in efforts to protect nursing homes, which were nationally recognized as potential coronavirus hotspots when an outbreak devastated a skilled-nursing facility in Kirkland, Washington.

“How do you get the attention of people who make decisions if you don’t have that information yourself?” Jehlen said. “And the people with decisions knew, and they did not act, in my opinion, adequately.”

Full Article & Source:
DATA DEBATE: When it comes to the coronavirus, nursing home secrecy frustrates family members

Minnesota nursing homes, already the site of 81% of COVID-19 deaths, continue taking in infected patients

Nursing homes accepting infected patients, even as death toll mounts. 

By Chris Serres

Jeff Johnson and his mother, Kathy Johnson, are visiting their father, Michael Johnson, who is 71, at the North Ridge Health and Rehab nursing home in New Hope. The Johnsons are worried that North Ridge's policy of accepting COVID-19

Despite the devastating death toll, Minnesota nursing homes are still being allowed by state regulators to admit coronavirus patients who have been discharged from hospitals.

Early in the pandemic, the Minnesota Department of Health turned to nursing homes and other long-term care facilities to relieve the burden on hospitals that were at risk of being overwhelmed by COVID-19 patients. Minnesota hospitals have since discharged dozens of infected patients to nursing homes, including facilities that have undergone large and deadly outbreaks of the disease, state records show.

Now that practice is drawing strong opposition from some lawmakers, residents’ families and health watchdogs, who warn that such transfers endanger residents of senior homes that are understaffed and ill-equipped to contain the spread of the coronavirus. They are calling for more state scrutiny over transfers, including stricter standards over which nursing homes should be allowed to accept COVID-19 patients from hospitals.

Currently, even poorly rated nursing homes with large and deadly clusters of coronavirus cases have been allowed to admit COVID-19 patients from hospitals. One such facility, North Ridge Health and Rehab in New Hope, has accepted 42 patients from hospitals and other long-term care facilities since mid-April even as the coronavirus has raged through its 320-bed nursing home, killing 48 of its patients and infecting scores more.

“It makes no sense to bring more COVID-19 patients into facilities that have already failed to protect them,” said Sen. Karin Housley, the Republican chairwoman of the Senate Family Care and Aging Committee. “If it were my mom or dad in one of these facilities, I would be really worried.”

State health officials and long-term care industry representatives have defended the practice of discharging some COVID-19 patients to nursing homes, saying it is part of a broader strategy to conserve critical hospital beds during the pandemic. Long-term care facilities can provide treatment for coronavirus patients who still need care, but have stabilized enough that they no longer require hospitalization, officials said.

So far, 11 facilities statewide have been designated as “COVID support sites,” with separate units or wings to handle coronavirus patients. These specialty sites have gone through a vetting process by the state to ensure they have adequate staffing, supplies and infection-control standards.

However, other nursing homes have been allowed to admit COVID-19 patients under private arrangements with hospitals. The practice is widespread. The state Department of Health has reviewed the cases of about half the patients hospitalized for COVID-19 statewide. The agency found that 27%, or about 268 patients, were discharged to long-term care facilities since the pandemic began.

“Hospital beds are a key resource during this pandemic, and they must be preserved for those who are in need of acute care,” the Minnesota Department of Health said in a statement. “For COVID-19-positive patients whose care requirements are below that level, the goal is to get them out of the hospital and into an appropriate setting for their next stage of care — one that can provide the services they do need while minimizing the risk of transmission.”

But the fear that moving coronavirus patients to nursing homes might trigger more infections has been compounded by the alarming death toll in such facilities.

Statewide, the respiratory disease caused by the coronavirus has killed more than 600 Minnesotans at nursing homes and assisted-living facilities. That is a staggering 81% of the deaths from the pandemic statewide. No other state in the nation that reports such data has such a high percentage of deaths in long-term care, according to an analysis by a Texas-based nonprofit. Nationwide, outbreaks in long-term care facilities have claimed 33,000 lives — more than a third of all deaths nationwide, according to the Associated Press.

“To be sending more contagious people into these settings is a serious cause for concern,” said Rep. Jeremy Munson, R-Lake Crystal, a member of the House Long-Term Care committee.

Jeff Johnson of Maple Grove said his 71-year-old father has been a patient at North Ridge since he suffered severe injuries in a car crash in March. He was surprised when a staff member at the facility informed him that COVID-19 patients were being admitted to the facility from area hospitals. While his father remains symptom-free, Johnson said he is concerned that staff might carry the virus from the newly admitted patients.

“I was absolutely shocked that [North Ridge] would risk exposing workers and everyone else in a facility without asking for our input,” said Johnson, a gymnastics instructor. “It seemed that we should have had some say in the matter.”

Government health records show that North Ridge has struggled in recent years to adhere to basic standards of patient care. The facility has been fined $117,000 by federal regulators and cited for dozens of health and safety violations over the last three years. The nursing home earned just two stars (“below average”) on the federal government’s five-star rating system for overall care. The facility was also listed among the most-troubled nursing homes in the nation.

A spokesman for North Ridge acknowledged that admitting patients with COVID-19 has posed challenges, but said the facility has space and enough trained caregivers to handle new admissions of COVID-19 patients. Early in the pandemic, North Ridge set up separate units to isolate COVID-19 patients from the rest of the clients and was able to provide them with a full supply of protective equipment, he added.

“We don’t regret caring for people in need for a second,” said Austin Blilie, vice president of operations at North Ridge. “These are people who are being turned away from other places that do not have the capability to care for them.”

Although there is no evidence that moving coronavirus patients to nursing homes has caused infections to spread, the practice has come under increased scrutiny nationwide. Officials in California and New York both ordered nursing homes to accept coronavirus patients to help reduce potential overcrowding in hospitals during the pandemic; but then both states reversed those directives after an outcry from senior groups and the medical community, according to news reports.

Already, one large Minnesota nursing home has suspended plans to take in coronavirus patients amid public opposition.

The operator of Augustana Care Health and Rehabilitation in Apple Valley had planned to create a separate, 28-bed unit for people recovering from the virus, but pulled the plug in April after dozens of residents’ families and local officials voiced concerns in public Zoom calls. Despite assurances that any new patients would be separated and cared for by dedicated staff, many families expressed trepidation about bringing COVID-19 into a facility that has not been infected, said Bob Dahl, chief executive of Cassia, which operates the facility.

“We thought it was a good idea from a public service perspective, but there was significant pushback,” Dahl said. “What [families] couldn’t accept was this idea of admitting someone with COVID when it was not in the building, and why would we do that now? It was perfectly understandable.”

Advocates for nursing home residents and public health experts have argued that facilities should not be allowed to decide on their own whether to admit COVID-19 patients. And they want the homes to meet certain standards. Facilities with low staffing levels and poor infection-control records should be barred from accepting such patients, according to the Center for Medicare Advocacy, a nonprofit legal assistance group for seniors in Washington, D.C.

Across the nation, there are examples of poor-performing nursing homes accepting coronavirus patients with little or no oversight from state regulators, said Toby Edelman, a senior attorney for the Center for Medicare Advocacy. Some of these facilities have a one-star rating of “much below average” from the government for staffing levels and quality of care, Edelman said. “Without some minimum standards, this is a recipe for disaster,” she said.

Joseph Gaugler, a professor of long-term care and aging in the University of Minnesota’s School of Public Health, said nursing homes should be required to establish certain safeguards before accepting COVID-19 patients. These include demonstrating that they can isolate infected residents, maintaining regular testing, and have a staffing plan to handle an influx of new patients with the virus.

“If a nursing facility isn’t following best practices, then [coronavirus] patients should go elsewhere,” Gaugler said.

Full Article & Source:
Minnesota nursing homes, already the site of 81% of COVID-19 deaths, continue taking in infected patients

Guardianship Programs See Rising COVID-19 Death Toll

Kimberly George, Director of the Guardianship Project, Vera Institute of Justice, at her home. Since March 13th George has picked up and scanned nearly 600 pieces of mail containing clients’ bills, benefits paperwork, income checks and health insurance.

On March 27, John, a 68-year-old, succumbed to COVID-19 one day after he was diagnosed with the disease. He was one of 167 people that passed away in the city that Friday. Already afflicted with COPD, peripheral vascular disease and diabetes John (not his real name) had little chance of surviving. In fact, his health had been so fragile for so long he’d spent a dozen years in the state’s guardianship program—a program now facing immense challenges protecting its extremely vulnerable charges from the ravages of the pandemic.

In 2008, after 20 years of homelessness, a hospital petitioned for John to be enrolled in the state’s guardianship program, and he spent the last 12 years of his life under the watch of The Guardianship Project, an initiative of the Vera Institute. The guardianship program was implemented for individuals like John who are unable to make their own health or financial decisions. They are often those determined by a judge to be “incapacitated” due to a wide variety of issues, including dementia, serious medical problems, pending evictions, elder abuse, and placement in institutional settings against their will. If family or friends are unavailable to take responsibility, the court will appoint a legal guardian.  While anyone over 18 qualifies for the program, most participants tend to be the elderly.

Data on how many guardianship cases in the system are fuzzy but from 2007-2011 there was an average of 2,400 cases per year, according to court data.

From disrupting grocery delivery services to shaping how medical decisions are made, COVID-19 has disrupted the arrangements that have helped the vulnerable New Yorkers enrolled in guardianship programs achieve a semblance of a normal life.

In most cases, staff in these organizations have to take on multiple roles to meet the needs of this vulnerable population. About 40 percent of the 174 clients in the guardianship program run by the Vera Institute live independently at home. Some rely solely on social workers for groceries, medication, or money. Without gloves or masks, social workers have to make grocery runs because grocery delivery services are hard to obtain. “We’ve had to find alternative methods for getting groceries to 25 clients,” says Kimberley George, director of the guardianship program. “Our social workers are going to grocery stores, doing the shopping, and delivering the groceries to clients in their homes,” she added.

As of Monday, 11 Vera clients have died since the pandemic began. At least six were confirmed to have COVID, and it is suspected in the other cases. Fifteen other clients are sick.

Marco Damiani, CEO of AHRC NYC, an organization that supports thousands of intellectually and developmentally disabled people, says staff now have to act as counselors to those clients who have lost friends. The organization has already lost 12 clients and four staff members to COVID-19. “Our staff are also now … being mental health counselors,” he says to City Limits. “People no longer have their roommates or their friends and it’s harder for them to understand it,” he added. Damiani says his organization has launched a virtual mental-health platform where psychologists and social workers can now talk to staff and residents. 

Because most clients in the guardianship program are elderly and already suffer from poor health, simple decisions such as whether to send someone to the hospital —where they risk exposure to the virus— are now complicated. “While in normal times sending a client to the hospital is a safety measure, with the pandemic, we are trying to avoid sending clients to the hospital if at all possible,” George writes in a follow-up email.

George says another challenge guardianship programs face is convincing some clients who live independently—and may not understand the gravity of the situation—to stay home. “We have some clients who want to go out either because they don’t understand what’s going on right now or they don’t understand that they need to stay put.”

Damiani echoes a similar sentiment. He says the pandemic is affecting some residents who may not fully understand the disruption in their daily routines. For example, some programs have been temporarily shut down and face-to-face services have been limited. Movement in and out of the group homes is also restricted.“This is very upsetting to folks with autism. It’s very hard for them to communicate their fear. So, they act out of fear. They may strike out at somebody. They may become very isolated and not cooperate,” he says.

But for Damiani and his organization, another threat looms large on the horizon: anxiety about a possible delay in state funding. In a little over a week, funding for organizations such as AHRC NYC will run out. Damiani says they have been unable to get assurances from the state about whether funding will continue at pre-COVID-19 levels. Despite many programs shutting down, Damiani  says he is concerned that any cuts will make it harder for organizations to retain their workforce. “We do have increased call out rates. I think with every organization the workforce is less robust than it was,” he says. “In a week or two if we don’t have additional resources, we may have a staffing challenge,” he added. 

In a statement to City Limits, the Office for People With Developmental Disabilities, the state agency responsible for the funding says it is working with the federal agencies “to sustain providers by providing retainer payments to provider agencies in recognition of the costs incurred as a result of the COVID-19 pandemic.”  The agency says it “will continue to work with providers of services through this difficult time to ensure they receive the needed resources to continue to provide quality services,” the statement continued.

While guardianship programs face many challenges, George says she worries more about those elderly New Yorkers that are unknown to the system. “What we are most concerned about is people who do not have family, friends or guardians. We are worried that those people would fall through the cracks,” she says.

Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging at Hunter College, agrees. She says people who have guardians or are in congregate settings are in better shape than those not known to the system. “People who are frail and may lack capacity in all kinds of ways are even more worrisome because they are not necessarily known to any system of care,” Finkelstein says. “It’s very concerning to think about people who are behind those doors and what do they need,” she added.

According to George, the actual number of cases among clients is unknown since some nursing homes have stopped testing. Some of those tested positive suffer from schizophrenia, bipolar disorder or dementia. “We are also being told by the nursing homes that they are understaffed and lack the appropriate protective equipment,” George says. “One of our ill clients is completely bed-bound and in their own room, leading us to believe they must have caught the illness from a staff member.”
As case counts begin to subside, the focus will shift to what could have been done better to protect all New Yorkers, especially the most vulnerable, from the coronavirus.

“We’ve learned a lot of lessons on what we need to do to be prepared,” George says. “We have to ensure that our safety net is robust enough that every person in society has somebody looking after them whether it’s family or friends, community-based organization,” she added.

Unlike many unforeseen service disruptions, John’s funeral went relatively smoothly. Thanks to a prepaid funeral contract signed in 2010, it was one set of decisions that didn’t have to be made under the pressure of a pandemic.

Full Article & Source:
Guardianship Programs See Rising COVID-19 Death Toll