Digest 2022

The Dignity Digest is information compiled weekly by Dignity Alliance Massachusetts concerning long-term services, support, and care. We provide direct links to featured articles below. Each digest contains many more articles on key topics including Nursing Homes, Assisted Living, Home and Community, Housing, Behavioral Health, and Covid-19 than are highlighted below.

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Older Digests are found on the Digest 2020-2021 page.

Issue #119 – December 19, 2022


This week’s Spotlight is on the Amicus Brief related to the Soldiers’ Home.

Issue #118 – December 12, 2022

Issue #117 – December 5, 2022


Introductory note from Richard Mollot, Executive Director, Long Term Care Community Connection:
I am writing to share this important report on nursing home care and the persistent failure to ensure that facilities fulfill their promise to provide sufficient staffing to meet the needs of the residents that they accept and retain in their facilities. 
The national data provided in the report are striking. We encourage anyone with interest in or concerns about sufficient staffing to check out the staffing in their nursing home, or those in their community, at https://nursinghome411.org/data/staffing/.
We applaud and support President Biden’s promise to reform nursing home care announced earlier this year. Some of his proposals will take time to implement. However, there are many improvements that could be made in the lives of residents and their families immediately if CMS and the state survey agencies improved enforcement of existing standards of care and treatment.
Too many of our nursing homes operate on the premise that providing substandard care, neglect, and inhumane conditions is a good business model (see, for example, the NYS Attorney General’s lawsuit announced this week).  This is only possible because (as both the article and the AG’s lawsuit detail), too often, state survey agencies fail to hold operators accountable for meeting minimum standards.
How long will we have to wait for this to change? For too many, it is already too late.
Richard Mollot, Executive Director
Long Term Care Community Connection

Dying for care – Many nursing homes are poorly staffed. How do they get away with it?

*USA Today,  December 2, 2022 (updated)

President Biden has promised tougher standards, but USA TODAY found the government rarely enforces existing guidelines.
Regulators have allowed thousands of nursing homes across America to flout federal staffing rules by going an entire day and night without a registered nurse on duty, a USA TODAY investigation has found.
Nearly all of them got away with it: Only 4% were cited by government inspectors. Even fewer were fined. 
When other nursing home caregivers are added into the equation, one-third of U.S. facilities fell short of multiple benchmarks the federal government has created for nurse and aide staffing. 
Low-income residents, disproportionately people of color, fare the worst. Their nursing homes report the lowest staffing levels, but data show they seldom get in trouble because of it.
A USA TODAY investigation has documented, for the first time, how rarely the federal government enforces decades-old staffing guidelines and rules for nursing homes.
Citations and penalties remained sparse even as regulators developed three ways to measure staffing. In the spring, they will propose a fourth approach
Having enough nurses and aides is the strongest predictor of whether nursing home residents will thrive, researchers have found. When facilities are short-staffed, essential medical tasks are ignored. Doctor’s appointments are missed, call buttons go unanswered, diapers are not changed, showers are not given, and wounds are not cleaned. Dementia can set in faster. People get sicker, and die, alone.
The desperation of residents and their relatives can be heard in emergency 911 calls.
“She is on the floor, and she can’t get anybody to get her off the floor,” one niece told a Louisiana dispatcher. “Can y’all do a wellness call or something? I don’t know what to do.”
On the other side of the state, a man unable to leave bed without assistance defecated on himself. He dialed 911.
“I called” for help, he told the dispatcher. “But nobody answered.”
In his State of the Union address this year, President Joe Biden promised sweeping nursing home reforms. But the government’s persistent failure to crack down on facilities that fall short of nursing home standards could render his plan ineffective.
USA TODAY compared millions of nursing home timesheets and thousands of inspection reports to the staffing numbers set down by federal rules and formulas. It found a staggering pattern of failure.
Charlene Harrington, one of the nation’s leading researchers on staffing levels and nursing home quality, said USA TODAY’s analysis probably underestimated how often facilities fell short because it used a conservative standard to measure care expected from nurses and aides.
“What you’re looking at is the bare minimum,” said Harrington, a professor emerita at the University of California, San Francisco. And federal regulators have “not even been enforcing the bare minimum.”
The problem existed long before COVID-19. Among facilities that did not have a registered nurse on duty eight hours a day as required by the federal Centers for Medicare & Medicaid Services (CMS), most failed to meet that standard in all three years before the coronavirus tore through nursing homes. 
The pandemic did expose understaffing in nursing homes to many Americans. In its wake, former certified nurse assistant Tracey Pompey is floored that the public has not demanded better care for vulnerable elders.
“People get desensitized to things like this,” said Pompey, of Virginia. “If it happens to a child or a dog, people won’t shut up.”
James Lovette-Black, a California nursing home inspector until 2020, offers a glimpse of how the problem persists. Lovette-Black said facilities often did not have enough nurses or aides to meet residents’ needs. Yet despite his best efforts, he said, “I don’t recall ever citing for staffing violations in any nursing home in my eight years.”
He echoed hundreds of inspectors surveyed for a study in 2013 as he described why. Staffing citations were not a priority set by department leaders, Lovette-Black said, and they were difficult to back up. He accused facilities of routinely beefing up staff during inspections, among other tactics documented by researchers, to avoid blemishes on public ratings. 
The American Health Care Association, the nation’s largest trade group for nursing homes, said in a news release this summer that 94% of the country’s facilities missed minimum staffing guidelines tougher than those used in USA TODAY’s analysis.
The organization said in an email that “the vast majority” of nursing homes provide inspectors with accurate information. That, senior vice president Holly Harmon said, is not the culprit.
“We firmly support transparency and accountability,” Harmon said, “and we must also foster an oversight system that recognizes good faith efforts and promotes improvement, not just penalties.”
Speaking of Biden’s plan, she added: “A new, federal staffing mandate without the available workforce and financial resources necessary to meet it would reinforce a punitive process that hasn’t been working for decades.”
Medicaid reimbursements, which pay for most nursing home stays, pays less than Medicare. The broader financial picture, however, is complicated.
Taxpayers spend nearly $90 billion each year on Medicaid and Medicare stays at nursing homes — many of them run by companies that report double-digit profit margins. Nursing homes also pay caregivers less than most other health care sectors. 
Half of nursing staff — or more — turns over in a year, according to federal statistics on the industry.
Registered nurse Barbara Decelles made the best of it for 38 years at senior care centers in Wisconsin and Illinois. She quit last year.
She’s done working 25-hour shifts, knowing she might be making mistakes, then, exhausted, driving off the road on her way home.
She’s done choosing which call light to answer and which to ignore. She’s done asking for more help and being told it doesn’t fit the budget. She’s had it with owners appearing on a busy day to celebrate the staff’s heroic work with a goofy photo-op but not extending benefits to aides or awarding raises.
But she can’t escape from the anger – that people she cared for daily declined faster and died sooner because of inadequate staffing.
“Somehow, somebody is making money off of this, and it certainly isn’t the caregivers,” Decelles said. “I’m tired to my soul.”
Understaffing has been a problem throughout decades of nursing home reforms – one that Bill Halamandaris said leaders in Congress and at CMS have repeatedly sidestepped. 
Halamandaris, a retired Capitol Hill staffer, worked on the Senate Committee on Aging as the nation wrote its first rules for nursing homes and granted broad authority to federal health officials to enforce them. Halamandaris said the 1967 Moss Amendments, among other things, were intended to lead to the creation of staffing minimums and a subsequent crackdown.
That didn’t happen. 
“Like a lot of things, the congressional intent is lost in the bureaucracy,” Halamandaris said.
Federal regulators have since created multiple ways to measure whether a nursing home has enough staff. 
Since the late 1980s, regulations have required facilities to have “sufficient nursing staff” to meet resident needs and to have a registered nurse in the building at least eight hours every day. 
In 2001, a study commissioned by the Medicare regulator for Congress recommended minimum numbers of nurses and aides.
Then, beginning in 2011, CMS relied on the findings of a different study to determine how much to pay nursing homes for residents on Medicare. Reimbursements are calculated based on the level of staffing a typical nursing home provides for people with similar medical needs. It’s the formula CMS also deploys in its consumer-focused Nursing Home Care Compare tool.
That “expected” level of staffing, which USA TODAY used in its analysis, is almost always lower than the 2001 minimums. 
Regulators have not used either the 2001 or 2011 benchmarks for enforcement. And USA TODAY found a chasm between facilities whose own filings with the federal government show they blew a third standard, the eight-hour rule, and those who get cited for it. 
Nicholas Castle, a leading researcher on enforcement of nursing home standards from West Virginia University, said concentrated enforcement efforts also can have a significant effect. For instance, CMS and state inspection agencies focused for years on reducing the use of physical restraints.
Those restraints, he said, have “almost disappeared.”
Long-term care advocate Richard Mollot said that even without explicit numeric staffing requirements, the federal government’s qualitative approach combined with a wide array of available staffing benchmarks should provide plenty of leverage over short-staffing.
If inspectors “were empowered and interested, able or willing, to enforce this, I think the sufficient staffing requirement would be fine,” said Mollot, executive director of the Long-Term Care Community Coalition. “But unfortunately, they’re unwilling or unable to do that.”
CMS declined multiple requests for an on-the-record interview about USA TODAY’s findings, staffing levels and oversight.
The results of timid enforcement play out daily in nursing homes across America.
Cindy Napolitan, 66, is an eyewitness to what short-staffing means at Cheyenne Medical Lodge in Mesquite, Texas, where she lives with her adult daughter. Both have multiple sclerosis, and Napolitan’s husband, who had been their caregiver, died in 2017.
Based on the 2001 federal study, the home should have enough aides to provide 2.8 hours of care per resident each day. The formula the government uses to pay the home Medicare money assumes it’s offering 2.4 hours. The real number for Cheyenne Medical Lodge? Each resident can expect 1.7 hours of aide care daily, according to its most recent reports to the government.
Napolitan described a struggle to get regular showers or help transferring into a wheelchair. She said her daughter developed a painful pressure ulcer because a doctor’s orders to turn her every two hours were not followed. 
The administrator of Cheyenne Medical Lodge and its operating company, Foursquare Healthcare, did not respond to multiple requests for comment.
Since 2017, Texas nursing homes have reported the nation’s second-lowest staffing levels, USA TODAY found. Although more than 950 facilities reported fewer nurses or aides than expected by the Medicare formula, inspectors issued citations to just 16 of them – among the country’s lowest penalty rates. 
A spokesperson for the Texas Department of Health and Human Services said inspectors “thoroughly investigate those concerns.” But assistant press officer Tiffany Young noted that the data collected by CMS is old before inspectors arrive, adding that they “are looking at staffing at that specific point in time.” 
Napolitan has filed complaints, and when state inspectors made a repeat visit earlier this month, she said she quizzed them about whether her nursing home has had a record number of grievances.
“We don’t even come close,” she said. “That’s scary.” 
She’s resigned to the fact that she’ll probably be fighting for good care for herself and her daughter as long as she can still communicate. 
“I’m diplomatic; I try to be,” Napolitan said. “But there are times when you just have to say, ‘All right, enough is enough.’”
Residents of other nursing homes and their family members told USA TODAY they felt trapped. No matter where they went, they could not find adequate care. No matter who they told about staffing problems, they could not find someone to improve the situation.
In New York City, Claire Campbell encountered low staffing levels everywhere she took her mother, Grace E. Campbell.
USA TODAY’s analysis found that during her stays in two nursing homes between 2019 and 2022, the gap between actual staffing and CMS’ expected staffing ranked them in the state’s bottom third. 
Even though Claire participated on the family council at one and filed numerous complaints with the state against both facilities, she said little ever changed.
In 2019, Grace entered The Riverside Premier Rehabilitation and Healing Center in Manhattan, a for-profit facility that overlooked the Hudson River.
She still was able to do the daily crossword in The New York Times and play along with “Jeopardy,” but she needed help standing up from the toilet. Instead, Claire said, nurses insisted her mother wear a diaper. 
Delays in diaper changes, she claims, set off a chain reaction: Her mother avoided drinking water then suffered from dehydration and urinary tract infections. 
In an email to USA TODAY, The Riverside administrator Jake Hartsein declined to discuss those allegations but denied that residents experience delays or omissions in care. He said that CMS recently gave the facility a five-star rating for some quality measures. He failed to mention that one-star ratings for health inspections and staffing pulled Riverside’s overall rating down to two stars.
When asked if he thought his staffing levels were adequate, Hartstein wrote: “In comparison with other skilled nursing facilities in our immediate proximity, The Riverside’s nurse aide (CNA) staffing levels are on the same level.”
After yet another fall, Grace moved from The Riverside to Amsterdam Nursing Home, a nonprofit, in the early summer of 2021. There, Grace routinely had to wait hours for help to use the bathroom, Claire said. She could not push her wheelchair over the marble threshold. 
Because of the frequent delays, Claire said, she hired an aide to visit her mother at the nursing home. Even that did not guarantee timely care.
On Claire’s birthday in January, Grace called saying she had to have a bowel movement, but no one had helped. Claire and a friend abandoned their lunch to rush over.
Within an hour, Grace, 98, was dead. Her death certificate read “natural causes.”
In a statement to USA TODAY, a spokesperson for the management company with which Amsterdam Nursing Home contracts, Centers Health Care, said “safety and care” are the top priority.
Corporate communications director Jeff Jacomowitz said in a statement that the facility meets all state staffing requirements. Yet, Amsterdam Nursing Home was cited for insufficient staffing by the department’s inspectors in February, just weeks after Grace’s death. 
Government penalties for insufficient staffing are rare in the state of New York. Of the facilities reporting levels below those expected by the Medicare formula, only 3% were cited for it. 
The inspectors who visited Amsterdam showed how it could be done. They compared daily staffing reports with the facility’s assessment of complete staffing, finding enough caregivers on just four days in January 2022. 
One nursing assistant interviewed by inspectors called the situation “a nightmare.” She said she was embarrassed to answer the phone and talk to family members who wondered why their relative had not been taken out of bed that day. “I can’t take 18 people out of bed when there are only two staff,” she said. “It’s impossible.”
Inspectors also had issued a citation for insufficient staffing to The Riverside in May 2019, when Grace was a resident. Neither that citation nor the one for Amsterdam ended in fines.
“Ensuring all nursing home residents receive proper care is a priority of the New York State Department of Health,” said  Deputy Director of Communications Jeffrey Hammond. He also noted that inspections “are conducted in accordance with federal regulations.”
A new state law that took effect in April requires nursing homes to spend at least 40% of their revenue on staff that provides face-to-face care. 
“I reported it to everyone,” Claire Campbell said of the understaffing and poor care. “From the nursing station to the medical director to the wound care director to the ombudsmen to the State of New York Department of Health. … Nobody took action.”
Part of the president’s plan to address lax enforcement of nursing home rules is to pay states to hire more nursing home inspectors and boost their pay.
Inspectors, who often are registered nurses, can find better wages and less out-of-town travel in the private sector. Federal funding for nursing home enforcement has not changed since 2014: about $397 million a year. Biden wants to increase that by 25%, matching inflation over the past seven years. 
Sen. Bob Casey, a Democrat from Pennsylvania who has pushed for tougher enforcement on the worst nursing homes, supports the funding increase. 
“I’ve been advocating … for years now, for not just transparency and accountability with regard to nursing homes themselves,” he said, “but also the resources that will bring about that transparency, accountability and better performance.”
Casey notes that a January report from the Inspector General for the Department of Health and Human Services found inspection agencies understaffed. A quarter of states routinely miss a federal deadline to inspect a home within 10 days of receiving a safety complaint.
In letters to state officials this fall, Casey said about a third of nursing homes are overdue for standard annual inspections. Some states are doing far worse than others.
Inspectors also have reported frustrations with the job. The 2013 survey of hundreds of nursing home inspectors in 10 states found widespread pressure from industry and elected officials to change inspection results
“We are being crushed by political influence of the nursing home groups,” one inspector wrote.
Some inspectors said they would recommend fines or even stiffer penalties only to have their bosses “downcode” their reports. A reversal that “throws out things you work so hard on can be discouraging,” another inspector wrote.
Dean Lerner, an attorney who oversaw regulatory enforcement in Iowa for nearly a decade, said he once expanded the state’s team of nursing home inspectors because they “were so understaffed.” But, he said, the incoming governor cut those positions before anyone could start.
Sometimes CMS’ own guidance has created confusion. 
The federal manual given to states to train their inspectors for years told them they should not investigate staffing levels unless the inspector had first found that care standards were not met. It’s like handing out speeding tickets only to drivers who crash.
A year after regulations changed in 2016, that guidance was updated, allowing inspectors to look into staff at any time and without needing to link low staffing to poor care. But the rarity of citations, coupled with observations of inspectors, suggests some still believe they need examples of care violations.
That’s not the only barrier confronted by inspectors. Nurses told USA TODAY they have been threatened with termination if they speak honestly to inspectors. Others feared they could be held personally responsible for poor care caused by understaffing beyond their control.
Nurses also confessed they had given falsified staffing data to inspectors during visits or called in extra workers on days they learned inspectors would be coming. Academic research has found staffing spikes around inspection days.
Lovette-Black, the retired California state inspector, recalled seeing the same staffing-related problems – “frequent falls or pressure injuries or infections,” he said – year after year at the same facilities. By submitting paperwork that testifies they had retrained their staff members or had adjusted staffing schedules, he said, the nursing homes would be deemed back in compliance. 
“A year later when you went back, they would have slipped back into their bad practices,” he said. “There still wasn’t enough CNAs. Wasn’t enough licensed nurses.
“Nothing really changes. The culture doesn’t change.”
After David Jones, 71, had a stroke, he was sent to a Virginia nursing home for a few weeks of physical therapy to regain use of his leg. He and his wife chose Glenburnie Rehab and Nursing Care Center, a facility near their predominantly Black neighborhood in Richmond. 
The proximity made it easier for Jones’ elderly wife and daughter – a nurse’s aide – to spend time with him daily. After retiring from his job as a hospital janitor, Jones had loved to travel and especially enjoyed fishing trips in the rural countryside where he grew up. Friends and other family members visited him in the nursing home.
Low staffing is particularly acute at nursing homes that serve a high proportion of nonwhite residents. That includes many facilities in Virginia like Glenburnie Rehab, where about half the residents are Black.
At Virginia facilities with more residents of color, only 7% met the staffing levels they were expected to employ based on the Medicare payment formula. Among all other nursing homes in Virginia, 30% hit that mark.
Yet only eight staffing citations were issued to any nursing home in Virginia last year. Three of them went to predominantly Black homes.
Kimberly Beazley, director of the Virginia office that oversees nursing home licenses and inspections, said the division has historically had more turnover than other teams. She said 30% of inspector positions are now vacant.
But Beazley said she does not think vacancies have affected the quality of inspections, only the quantity inspectors can complete. Asked whether the state was issuing enough citations for staffing violations, she said, “We have followed all CMS’ guidance.”
Researchers have connected the disparity in staffing to higher for-profit ownership of nursing homes in Black communities and the fact that more Black residents pay for their stays with Medicaid, which reimburses nursing homes at a lower rate. Some are too young for Medicare; others end up there beyond the usual 21 days covered by that benefit.
Tetyana Shippee, associate director of research at the Center for Healthy Aging and Innovation at the University of Minnesota, said the racial disparities in COVID-19 deaths brought attention to a little-discussed niche of nursing home research: the health and quality-of-life consequences of structural racism in policies and practices.
“Nursing homes are the most racially segregated aspect of health care,” she said. People who go to a facility where fewer residents are white will have different outcomes, she said. “Regardless of your health profile, you’re going to have worse quality of care.”
Tracey Pompey, a nurse’s aide in Virginia for 30 years, saw the disparities while working as an on-call agency nurse in dozens of facilities.
“No one is being held accountable for what is happening in these facilities,” said Pompey, a co-founder and vice president of the advocacy organization Justice and Change for Victims of Nursing Facilities. “I saw firsthand how patients are treated; how horrible the staffing levels are.” 
David Jones is Pompey’s father. She experienced the system from a new vantage point when writing a complaint about his care at Glenburnie, in which she described how she believed nurses and aides had failed to adequately address serious symptoms in the hours leading up to his death and did not notify family of his condition as required.
The administrator at Glenburnie did not return multiple requests for comment.
USA TODAY found that in every quarter since 2017, Glenburnie timecards reported fewer nurses and aides on hand than expected based on the federal reimbursement formula. At the time of Jones’ 2015 stay, federal regulators used a previous system to track staffing levels. That self-reported data shows Glenburnie fell short on aides, who provide the bulk of care, and registered nurses, who are trained to assess resident medical conditions.
Since 2015, the nursing home has never been cited for short staffing.
On his fifth day at the facility, Jones complained of stomach pain. His belly was swollen. For hours he vomited stool, according to a 74-page state report. A nurse documented each of his complaints. The facility also noted he had not had a bowel movement in four days. 
An X-ray done at the facility showed Jones’ intestines were twisted, but no change in care was ordered beyond giving him giving him oral medications for stomach acid and constipation, along with a probiotic, according to the state report. No one did an abdominal exam.
Ten hours later, at about 2:30 a.m., a registered nurse on the next shift asked an aide to stay with Jones while she called 911, then his family. When she returned with the EMTs, the state report says, Jones was alone, face down on the floor.
His heart stopped before he could be carried into the ambulance.
An inspector issued citations against Glenburnie related to Jones’ death: failing to notify family about a change in condition, failing to maintain a resident’s well-being, and not keeping complete medical records.
A state review of time-stamped charting notes shows a manager at the facility amended Jones’ record days after his death to describe check-ins and care – some of which the review indicates the facility was unable to back up with additional documentation or that did not match staff interviews. 
Reflecting recently, Pompey remains frustrated that the facility was not fined for her father’s death. And she is left to wonder whether a lack of training or understaffing played a role.
“We feel that had they gotten him to the hospital sooner, things could’ve been different,” she said. “Somebody should’ve said, ‘Something’s wrong.’”
When Biden was vice president, the Obama administration had a shot in 2016 at making the rules for nursing homes more explicit. Academics and advocates were calling for numeric staffing minimums to be written into new federal rules — and for those minimums to be enforced.
The administration chose a different path.
“We agree that sufficient staffing is necessary,” CMS wrote in the Federal Register. “However, we do not agree that we should establish minimum staffing ratios at this time.”
Instead, the agency decided, nursing home managers would have to conduct a “facility assessment” listing how many workers the facility would have on hand, a number they’re supposed to develop based on the medical conditions of residents. 
Little changed. USA TODAY found staffing levels at nursing homes have actually decreased 9.4% since 2017, when the assessments were first required. And penalties for understaffing remain rare.
Now under order from Biden as president, CMS plans to propose explicit minimums next year for each nursing role, which it says should push facilities to improve. It could be years more before new rules take effect or are enforced.
“Having something that’s more objective and numerical … would be useful for increased enforcement relative to the existing, more qualitative standard,” said Hannah Garden-Monheit, special assistant to the president from the National Economic Council. 
But the data also shows putting numbers on the books is no guarantee they will be enforced.
In the vacuum of federal staffing minimums, 35 states stepped up to set their own, with varied results. Few wrote rules for both nurses and aides. None require the staffing minimums recommended by federal regulators in 2001. 
States with staffing rules
In addition to federal rules, 35 states have their own staffing requirements.
Oregon, for instance, requires at least 2.46 hours of daily care per resident from nurses and aides.
The northwestern state has the lowest percentage of facilities reporting low staffing and among the highest rates of enforcement, USA TODAY found. Last year, fewer than half of Oregon nursing homes reported less staff than expected in the federal payment formula. Inspectors issued citations to 44% of those that did – more than six times higher than the U.S. average. 
“Staffing is something we care deeply about in Oregon as inadequate staff is often the cause of safety and quality of care issues,” Department of Human Services communications manager Elisa Williams wrote in an email.
Louisiana also wrote its own staffing rules, but more nursing homes there fail to meet expectations, suggesting that state rules are not a cure-all if they are not enforced. It requires facilities to provide each resident at least 2.35 hours of care each day from nurses, aides and, sometimes, ward clerks. 
Last year, only 1 in 10 Louisiana nursing homes had as much staffing as CMS expected based on the reimbursement formula. The state also has the nation’s lowest levels of daily RN care in the five years reviewed: 16 minutes per resident compared with 38 minutes nationwide, a total that counts nurses working in administrative jobs.
Yet only five facilities were cited for short-staffing. Zero were cited for not having a registered nurse on duty at least eight hours a day even though 78% of Louisiana’s nursing homes fell short at least once.
The Louisiana Department of Health said in an emailed statement that every inspection includes a review of staff levels. Inspectors also review staffing when investigating specific cases of poor care. Citations are issued, the department email said, “if there is sufficient evidence.” 
Jacinda Gaston often smelled urine when she stepped off the elevator to start her shift on the fourth floor of Alden Lakeland, an Uptown Chicago nursing home.
Residents who could speak told her they had been sitting in soiled diapers for eight or more hours. Urine and stool ran up people’s backs to their necks and the entire bed had to be changed. 
She said it was a blessing when another aide shared the load.
“You have to make the decision: ‘What room can I get to first?’ Knowing in the back of your head there are people who are going to have to wait even longer,” said Gaston, an aide at the facility for five months this year. “Then you have the people who don’t understand. They’re constantly on their call light. By the time you get to them, they’re in tears.”
Two inspection reports from this year document the understaffing at Alden Lakeland. In February, the director of nursing told inspectors that the fourth floor was supposed to have at least five certified nursing assistants to care for the 74 residents – not two. 
The nursing home is one of six facilities named in a class action lawsuit recently filed against The Alden Network, among the largest nursing home operators in Chicago. Gaston has volunteered as a witness for the plaintiffs.
In a statement to the Chicago Tribune, Alden officials said they do not comment on pending litigation but wrote that the company “vigorously denies any and all allegations of wrongdoing.”
Alden’s vice president of policy and public relations, Janine Schoen, declined to answer questions from USA TODAY, including whether the owners believe staffing has been adequate at Lakeland. Instead, she focused on the company’s recruiting efforts, which she described as expansive, and called for action from the state and national capitals.
“We need our leaders in Springfield and Washington to focus on actionable solutions to attract more caregivers to the industry rather than punitive acts that fail to solve the underlying labor shortage,” Schoen wrote. 
Complaints about Alden Lakeland prompted more frequent inspections than the federal minimum of once every year and three months. Since 2012, inspectors have shown up 28 times and issued 90 citations.
Their reports documented abuse, broken bones, head wounds, medication errors, pressure ulcers that threatened lives, residents with dementia wandering unsupervised, improper use of physical restraints, cloudy catheter tubes, mice infestations and staff members providing care beyond the scope of their licenses. 
Residents went months without leaving their beds, weeks without showers and hours without a diaper change.
In the 11-year span covered by those reports, Alden Lakeland was fined only once. In 2016, the facility paid $1,991 for failing to report and investigate abuse or neglect. Three years later, inspectors issued the same citation but no fine when the facility did not investigate how a resident’s femur had snapped.
Until this year, none of Alden Lakeland’s citations were for short-staffing. 
Overall, Illinois nursing homes had the lowest staffing in the nation across the five years reviewed by USA TODAY. Last year, 91% of nursing homes missed the mark set in the Medicare formula. 
The state also has been more likely than most to issue staffing citations against nursing homes, USA TODAY’s analysis found – which still meant inspectors wrote up only 14% of facilities whose timesheets showed they had missed the expected staffing level.
Given the increasing focus from state and federal officials, the Illinois Department of Public Health “anticipates increased inquiry into staffing” during inspections, said spokesperson Michael Claffey.
Last year, Alden Lakeland had fewer nurses and aides on hand than most nursing homes in the state: 2.7 hours of care per resident each day, a ratio similar to figures the facility reported in previous years.
That’s 1.1 hours less care than the staffing the nursing home should have based on the Medicare reimbursement formula and 1.4 hours under what Medicare and Medicaid’s 2001 report found essential to avoid medical errors. 
The most recent staffing figures for Alden Lakeland are even lower.
Gaston, the former Alden Lakeland aide, said she once found a resident with dementia locked inside a shower room. He had been there at least three hours. Twice, Gaston remembers, a resident left the building unnoticed.
Mary Anne Miller, a retired physical therapist who worked at Alden Lakeland in 2018 and 2019, described the daily struggle to find an aide to help her move residents from bed into a wheelchair so they could attend therapy. 
Like Gaston, Miller has volunteered to testify against The Alden Network in the pending lawsuit.
“I couldn’t work there after a while because it was too heartbreaking,” she said. “It’s not because the staff isn’t trying. It’s just because there’s not enough staffing.”
Illinois lawmakers recently enacted reforms aimed at boosting staff and quality. The state has raised its staffing minimums and changed Medicaid payments to incentivize increasing staff and wages.
At Alden Lakeland, five inspection reports from this year noted the same kinds of poor care documented in dozens of earlier visits. But, for the first time, regulators issued three citations for insufficient staffing.
In May, a state inspector found two residents alone in the dining room, one eating with their fingers. Both had significant cognitive impairments and difficulty swallowing. Under medical order, they were to be monitored to ensure they not only ate enough but didn’t inhale food into their lungs or choke to death.
An aide informed the inspector that “there’s not enough staff” to watch or to help them eat. 
The inspector deemed it an isolated event and issued a citation that would not trigger a fine: “Minimal harm.”
This report received support from the Economic Hardship Reporting Project.

Issue #116 – November 28, 2022


When the Treatment of Last Resort Sends a Life into Limbo

New York Times (free access)
November 27, 2022
By Daniela J. Lamas
Dr. Lamas, a contributing Opinion writer, is a pulmonary and critical-care physician at Brigham and Women’s Hospital in Boston.

[Editor’s note: This is a timely, thought-provoking essay. You are encouraged to read it in full. It is accessible for free via the link. It echoes some of the debate that was occurring during the early days of the pandemic regarding the development of crisis standards of care. The issues involving the use (and ending of use) of advanced technologies in life-sustaining care are ever more prevalent and unresolved. Readers of The Dignity Digest are invited to share their perspectives which can help inform policy considerations for the Dignity Alliance and others. Submissions will be shared in future issues of The Digest. Your thoughts can be submitted via: https://forms.gle/EZLSqZcZtMMwvBt39.]

Francia Bolivar Henry was going to be the miracle patient. A pastry chef in her 30s with a captivating smile, she was funny and kind, loved Missy Elliott and chocolate souffle. Even as she battled a life-threatening disease, trapped in the intensive care unit while hooked to a machine that had taken over the functioning of her lungs, she found moments of joy. Once you met her, it was hard not to believe that she would beat the odds and survive.
That’s what struck me when I cared for Ms. Henry in the intensive care unit one weekend late this past spring. She had been admitted to Brigham and Women’s Hospital in Boston, where I work as a critical-care doctor, more than a month before, with a collapsed lung that would not reinflate and severely low oxygen levels. Though for years she had suffered from sarcoidosis — an inflammatory disease that can affect the lungs — it was still a shock when the doctors told her that the damage was so extensive that a transplant was her only option. . .
Though it has been used for lung and heart failure for decades, ‌‌ECMO came into the public eye more recently during the first wave of the pandemic as a last-ditch intervention for the sickest patients with Covid-19, whose lungs were so destroyed that they needed time on lung bypass to recover. Since then, ‌‌its use has increased in patients waiting for heart or lung transplants, and for those with respiratory failure because of pneumonia or asthma, a trend that is only anticipated to continue. At my hospital we now have a dozen machines, up from five before the pandemic.
But the decision to begin ECMO is a complicated one, because life on the machine is fraught with danger. Once on the machine, Ms. Henry knew that at any moment, she could have a life-threatening clot, a devastating hemorrhage, or a stroke. While those on dialysis for the kidneys or with a ventricular assist device for the heart can live at home for years, as of now there is no such technology for destroyed lungs. While on ECMO, patients cannot live outside the I.C.U. They need constant monitoring, often daily blood transfusions, and the longer they wait, the more complications they face.
Though we increasingly push the boundaries‌‌ with ECMO, it’s ‌not designed for ‌‌long-term use. That’s why doctors talk about the machine as a bridge rather than a destination. It is either a bridge to lung recovery or to transplant if recovery is impossible. This very fact is remarkable.
Patients like Ms. Henry, who would have died without the hope of transplant, are given a second chance at life. But it is a strange second chance, lived under the shadow of an almost intolerable reality‌‌: If transplant or recovery is not possible, then ‌the machine ‌‌becomes what we refer to as a “bridge to nowhere” and ‌has to stop. ‌Doctors make this clear when patients or, more often, their family consent to start ECMO. But can anyone truly understand that unthinkable possibility in the heat of the moment, when they or their loved one cannot breathe and would grasp at any chance at life, as was the case for Ms. Henry? And even if they could, what could they possibly do with that information? . .
Though this case occurred years ago, the conversations today are much the same. If transplant is off the table, the machine should stop. But as the use of ECMO continues to increase, including for patients who are bridging to lung transplant, I want to understand why we as a medical community have determined that these machines should not continue indefinitely. This question might seem limited to this one machine, this one scenario. But here at the forefront of modern medicine, we will inevitably find ourselves facing other profoundly difficult questions and unimaginable realities like this one. And the way we respond gets to the very heart of what it means to be a doctor caring for a patient.
Now, when it comes to ECMO, it’s essential to acknowledge that this machine is inherently different from a ventilator, which patients can and do stay on indefinitely. ‌‌It is the riskiest and most labor-intensive mode of life support we have, and in many cases, when a patient will never wake up again or interact meaningfully with loved ones, continuing ECMO serves only to prolong a life ‌‌without quality. For these patients and their families, more time on lung bypass means only more suffering‌. The greater ethical challenge comes in cases ‌‌where ECMO could enable a patient to continue a life that could be perceived as acceptable when compared with the alternative of death, for days or weeks or maybe even longer. . .
For doctors like me, the primary question should be not one of resources but instead our duty to the person in front of us. A bridge to nowhere means that we know, with no uncertainty, that this patient will not survive hospitalization. Acknowledging that fact, how do we minimize not just physical pain, but also emotional suffering?
On one hand, I wonder whether we should we leave the question of whether the machine stops and the timing of that to the patient and family‌. But deferring the decision of when to say enough to a devastated patient and beleaguered loved ones could itself be a kind of cruelty.
Then again, for some patients, maybe the greater cruelty is forcing them to come to terms with what is essentially a death sentence. ‌In cases like these, we often involve services like palliative care to help with difficult conversations over time and work with our hospital ethicists to develop policies and procedures. But here in the netherworld that our interventions have created, there are no clear answers.

Issue #115 – November 21, 2022


Boomers’ caregiving crisis

Axios, November 19, 2022

Aging baby boomers are living longer and have better financial safety nets than previous generations.

  • They’re also more likely to be divorced, live far from their children and be living with debt and a chronic condition, Axios’ Tina Reed reports.

Why it matters: The U.S. isn’t well-equipped to handle the largest generation of elderly adults in human history.

The big picture: By 2030, all baby boomers — which the Census Bureau defines as those born between 1946 and 1964 — will be considered seniors.

  • The population of people 65 and older is expected to nearly double from 51 million people in 2017 to 95 million by 2060, per the Population Reference Bureau.

Between the lines: Changing family dynamics are leading to a growing gap in the number of family caregivers, Mark Mather, associate vice president of U.S. Programs at the Population Reference Bureau, tells Axios.

  • Baby boomers generally had fewer children than their parents did — and their kids are more likely to have moved too far away to help out, Mather says.
  • Baby boomers are also more likely to be divorced, which means they may not have a partner to care for them.
  • Or they may have remarried with stepchildren, who studies show are less likely to care for an aging parent than biological children, says Sarah Patterson, a sociologist at the University of Michigan who specializes in demographic shifts in life expectancy.

Private equity’s elder care race 

Axios, November 19, 2022

A financial arms race is forming in senior care as private capital pours into the reshaping of elder care.
Why it matters: The perceived dangers of private equity entering senior care have largely focused on nursing homes, but the truth is, the dollars are flowing elsewhere.
Reality check: In fact, PE firms are estimated to own just 5% of U.S. nursing homes, per an industry trade group.

  • “Most of the innovation and new business models that have been developed have been about trying to keep people out of long-term-care facilities,” said Devin O’Reilly, managing director at Bain Capital.
  • The capital is following that innovation.

The big picture: Older Americans are the biggest cost bucket in health care, but care delivery and outcomes are inconsistent.

  • “This is a crisis for seniors to get better access to care because it’s costing all of us a fortune,” Advent International managing director Carmine Petrone said.
  • The trend of people living longer, and the extended post-work lifestyle, means that “increasingly, society is understanding that their living situation is also really important to their health care situation,” added Welsh, Carson, Anderson & Stowe general partner Sean Traynor.

Between the lines: COVID shed light on the disparities in health care across rural communities and low-income and marginalized populations.

  • Addressing health inequities is low-hanging fruit for some investors and entrepreneurs, said General Atlantic managing director and global head of health care Robbert Vorhoff.
  • His firm, alongside Town Hall Ventures, recently invested in Suvida Healthcare, dedicated to Hispanic seniors.
  • “Where is the most potential to create value? It’s finding people that have been least well served by the existing infrastructure.”
  • “We’ve got to figure out an efficient way to deliver care to rural America,” Jeremy Gelber, senior managing director at Centerbridge Partners, said. “On average, America is older and sicker.”

Context: Investors are focused on funding care delivery and technology companies that address every facet that can help people live independently and longer.

  • In-home and community-based care dominate much of the thinking.
  • Other large investment pockets are Medicare Advantage primary care, along with various home-based services and technologies ranging from infusion therapy to medication management.
  • The investment angle is huge, said Meera Mani of Town Hall Ventures. “When you’re talking about 50 million people and growing that are over the age of 65, that’s multiple segments with multiple needs.”

Zoom in: The high utilization of health care among the over-65 population makes for a gold rush that can’t be matched elsewhere.

  • On the Medicare side, there’s scale and durability of spending, whereas investing behind sicker members of younger populations is trickier, Vorhoff said.
  • And ultimately, “those are small dollars compared to the senior dollars,” said Gelber. “[Investors] go where the dollars are because if you can manage those dollars better, in a value-based way, you have the opportunity to get paid well for it.”

The bottom line: Elder care isn’t a one-size-fits-all approach, and neither is the ever-evolving investment opportunity.

Sacrificing for long-term care

Axios, November 19, 2022

Chart showing the share of middle-income seniors who will experience select limitations by 2033.  3 or more chronic conditions : 53% of 75-84 year olds, 55% of 85 or older. Mobility limitations: 50% of 75-84 year olds, 68% of 85 or older. Cognitive Impairment: 27% of 75-84 year olds, 40% of 85 and older. High needs: 13% of 75-84 year olds, 22% of 85 or older. Limits in daily activities: 4% of 75-84 year olds, 13% of 85 and older

Long-term care will become an increasingly elusive need for aging baby boomers in the next decade, forcing some to spend down their assets in order to qualify for Medicaid.
Why it matters: The population of middle-class seniors in America will increase 89% to 16 million by 2033, according to data from NORC at the University of Chicago.

  • Most will have chronic conditions and mobility difficulties, and nearly 75% won’t be able to afford assisted living without selling their homes, the NORC data shows.
  • Medicare doesn’t pay for long-term care services, and just 7.5 million Americans had separate long-term care insurance as of Jan. 1, 2020.

The big picture: Seniors with incomes too high to qualify for Medicaid are caught in a bind, having to either pay out of pocket for extended care or impoverish themselves in order to qualify for the safety net program.

  • “That’s not anyone’s best-case scenario,” Caroline Pearson, senior vice president at NORC, told Axios. “That doesn’t take advantage of their long-term financial assets. It doesn’t keep them healthy and in place for as long as possible.”
  • Senior living providers say they can’t provide enough affordable options for this demographic without more federal assistance.
  • “Frankly, the long-term care system in this country is broken,” Beth Martino, senior vice president of public affairs for the American Health Care Association/National Center for Assisted Living, said in an email.
  • “It requires an entirely different business model and vigorously looking for loans and government programs to keep it going.”

The big question: Pearson and others say it will take a combination of policy fixes to ease the burden on this population.

  • Policymakers could pare other health care costs by capping Medicare premiums or otherwise lowering copays and other out-of-pocket expenses for older adults, said Tricia Neuman, who directs the Kaiser Family Foundation’s program on Medicare policy.
  • Adding dental, vision and hearing benefits to traditional Medicare — as Democrats unsuccessfully tried this Congress — could also help, Neuman said.
  • States can also raise or eliminate asset minimums for Medicaid eligibility, and expand the availability of Medicaid home- and community-based services. The Bipartisan Policy Center recommends that lawmakers create a pathway for Medicare beneficiaries to buy into Medicaid home care benefits.

What we’re watching: Rep. Thomas Suozzi (D-N.Y.) proposed a long-term care insurance system funded by employer and worker contributions to a federal catastrophic long-term care fund.

  • Taking catastrophic insurance out of the private market would allow insurance companies to create better, more affordable long-term care insurance products.
  • But Suozzi is stepping down at the end of the year, and no one else has taken up the cause.
  • “It takes some bravery,” said Ruth Katz, senior vice president of public policy and advocacy policy at LeadingAge, which represents nonprofit aging service providers and is trying to keep the idea alive. “A payroll tax is ‘them’s fighting words.’ And people get really exercised about it, even though it’s less than 1%.”

Home health, nursing homes look for year-end breaks in spending deal

Axios, October 4, 2022

Long-term care and home health providers are ramping up pleas for financial relief in a year-end congressional spending deal, testing their influence against other health interests trying to tuck favorable provisions in the must-pass bill.
Why it matters: The wrangling over health care “extenders” is an annual rite, but there are higher stakes this year due to labor and supply chain issues and the after effects of the pandemic.

  • Nursing homes accounted for nearly one-quarter of COVID-19 related deaths in the U.S and were targeted for reforms in President Biden’s State of the Union address. But the industry is a vital cog in the health care system, caring for more than 1.4 million residents, as well as discharged hospital patients.
  • Demand for home and community-based care surged during the pandemic, but a severe shortage of workers is threatening the option, even for people who have the financial means, per the Washington Post. Almost 5 million patients received home health services in 2017, per the Centers for Disease Control.
  • Big home health companies like Amedisys, LHC and Aveanna that were poised to benefit from a shift to more in-home care could be hit by a steep proposed Medicare payment cut for 2023.

Where things stand: Congress has punted key funding decisions to the “lame duck” session, and Democrats have resisted repurposing unspent COVID-19 funds from earlier relief packages.

  • Nursing homes say there will be closures without reliable government funding as the industry grapples with negative margins and a median occupancy rate around 77%.
  • The home health industry is weighing possible legal action to halt the cuts it’s facing while also putting its hopes behind legislation from Sens. Susan Collins (R-Maine) and Debbie Stabenow (D-Mich.) which would delay the reductions until 2026.

What they’re saying: “We’ve seen from past rate reductions, reductions in access to care overall and the care people receive,” Bill Dombi, president of the National Association of Home Care & Hospice, told Axios.

  • “Our situation is much more exaggerated than other sectors in the space,” Clif Porter, senior vice president of government relations at the American Health Care Association/National Center for Assisted Living, told Axios. “We’ve lost 14% of our workforce during COVID and we’ve had very marginal and slow recovery in that workforce. It’s some of the lowest levels we’ve seen since the 1990s.”

Yes, but: Nursing homes and home health agencies were overpaid by the Centers for Medicare and Medicaid Services due to an unintended increase in payments to the industries stemming from the current reimbursement system.

  • The agency then delayed adjustments due to the pandemic. Now, some of the adjustments are coming due.
  • The Medicare Payment Advisory Commission backs payment reforms, saying the program has long overpaid for home health care. On nursing homes, it notes the combination of federal relief packages and recent changes that account for “case mix,” or resources predicted to care for residents, have improved facilities’ financial performance.

Go deeper: Medicare home health could potentially take a $810 million payment cut next year, which the industry says will force agencies to reduce their coverage areas or the volume of patient visits.

  • Raymond James analyst Chris Meekins expects CMS to soften the blow when it issues a final rule, possibly next month. But the cuts could be taken off the table entirely if Collins and Stabenow insert their three-year payment delay in a year-end spending package.
  • Nursing homes that would have lost $320 million under updated payment policies won concessions that will see reductions spread out over two years, along with a 2.7% pay bump for 2023.
  • CMS said the decision amounted to “taking a more cautious approach in order to mitigate the potential negative impacts on the nursing home industry, such as facility closures or disproportionate impacts on rural and small facilities.” Operators say it still doesn’t match the increased costs they’re facing.

What we’re watching: Biden in his State of the Union called for “higher standards” for nursing homes, including minimum staffing requirements and financial incentives based on the quality of care delivered. Proposed rules could come next year.

  • The industry is pushing back, saying a shortage of qualified workers and lack of funds to enforce a staffing mandate makes it unworkable. Industry-backed bills in the House and Senate would, among other things, extend pandemic-era staffing flexibilities and address workforce training and retention.

Keep in mind: Medicare only covers care services in nursing home facilities or at home for short-term recovery and discharge care. Long-term care must be paid for out-of-pocket or eventually by Medicaid.

  • Experts say change is needed to the long-term payment system, and that at-home health can be more cost-effective than care offered in facilities.
  • “We need to grow home and community-based care options while reimagining what a nursing home might look like,” David Grabowski, a Harvard University health care policy professor, told Axios.
  • While both home health and long-term care facilities are asking for more funding, Grabowski said the home health sector looks stronger, though he noted widespread nursing home closures haven’t yet materialized.

The bottom line: With a pileup of health spending requests packed into a post-election session, the industries will be vying with doctors, hospitals, and other provider groups for year-end gifts. “December is going to be a mess,” said Meekins.

Issue #114 – November 14, 2022

SpotlightKFF’s Kaiser Health News Investigates Private Equity’s Stealth Takeover of Health Care in the United States

Kaiser Family Foundation, November 14, 2022

A new investigation by KFF’s Kaiser Health News (KHN) lays bare the sizeable efforts by private equity investors to take over large and lucrative parts of the U.S health care system in recent years. KHN found that private equity firms have invested nearly $1 trillion through thousands of deals to acquire hospitals and specialized medical practices during the last decade alone.

The deals, many of them unnoticed by federal regulators, typically result in a ratcheting up of providers’ pursuit of profits – and higher prices for patients, lawsuits, and complaints about quality of care.

 The investments range widely and include the acquisitions of physician practices, dental clinic management companies, companies that treat autism, drug addiction and other behavioral health care, and ancillary services such as diagnostic and urine testing labs and software for medical billing. Through other deals, companies tied to private equity have come to dominate specialized medical services such as dermatology, gastroenterology, and anesthesiology in certain markets around the country. All of it has come on top of better-publicized takeovers of hospital emergency room staffing firms as well as the buying up of entire rural hospital systems.

Federal regulators have been almost blind to the incursion. KHN found that more than 90 percent of private equity takeovers or investments fell below the $100 million threshold that triggers an antitrust review by the Federal Trade Commission and the Justice Department.

 Whistleblowers and injured patients, however, have turned to the courts to press allegations of misconduct or other improper business dealings. KHN found that companies owned or managed by private equity have agreed to pay fines of more than $500 million since 2014 to settle at least 34 lawsuits filed under the False Claims Act. Most of the time, the private equity owners have avoided liability.

The latest story, published today in USA Today, is part of a broader ongoing series, “Patients for Profit: How Private Equity Hijacked Health Care” in which KHN has examined a wide range of private equity’s forays into the health care system. They include the marketing of America’s top-selling abortion pill, the establishment of “obstetric emergency departments” at some hospitals, investments in the booming hospice care industry and even takeovers of funeral homes and cemeteries. The series includes a video primer, “How Private Equity Is Investing in Health Care”.

Sick Profit: Investigating Private Equity’s Stealthy Takeover of Health Care Across Cities and Specialties

Issue #113 – November 7, 2022


What is at Stake for Medicaid in Supreme Court Case Health & Hospital Corp v. Talevski?

Kaiser Family Foundation, October 28, 2022

On November 8th, the U.S. Supreme Court is scheduled to hear oral arguments in Health & Hospital Corporation of Marion County (HHC) v. Talevski. The case raises the issue of whether Medicaid beneficiaries can seek relief in federal court when they believe their rights are being violated by state officials, or whether enforcement of state compliance with federal Medicaid rules should be left solely to the federal Centers for Medicare and Medicaid Services (CMS). While the case is about Medicaid, there could be implications for other federal programs beyond Medicaid where states play a role in administering or implementing them. This policy watch explains the case and what is at stake with the Supreme Court decision.

What is the Talevski Case?

Gorgi Talevski’s family filed a lawsuit against the Health and Hospital Corp of Marion County, Indiana (HHC) (a municipal corporation and political subdivision of the state that operates nursing facilities) alleging that his nursing facility’s use of psychotropic drugs as chemical restraints, involuntary transfers and attempted involuntary discharge to a dementia facility violated the Federal Nursing Home Reform Act (FNHRA). FNHRA establishes the minimum standards of care to which nursing-home facilities must follow to participate in the Medicaid program. The Talevski family sued using a federal law known as Section 1983, which parties have used for decades to enforce certain federal rights.

The family argues that “FNHRA’s rights against chemical restraint and involuntary discharge and transfer are enforceable under Section 1983 and that an adverse ruling would be disastrous for federal safety-net programs”. A federal district court dismissed the case, ruling that Medicaid enrollees cannot enforce the FNHRA. The Talevski family appealed, and the Seventh Circuit Court of Appeals reversed the district court, allowing the Talevski case to continue. HHC petitioned to have the case heard by the Supreme Court. On May 2, 2022 the Supreme Court granted the petition for certiorari and the Supreme Court will hear oral arguments on November 8, 2022.

The Court will consider two questions. The first is broadly whether the Court should reexamine its longstanding position that individuals have a right to sue in federal court to protect rights for legislation created under the Spending Clause of the constitution (e.g., federal laws including Medicaid, the Children’s Health Program, and the Supplemental Nutrition Assistance Program (SNAP)). The second, more narrow question, is assuming that individuals do have enforceable rights, are the rights guaranteed under FNHRA enforceable.

How Does Enforcement of Medicaid Requirements Work Now?

Under current law, states administer Medicaid within broad federal guidelines. There are generally two ways in which state compliance with federal requirements is enforced – through oversight from the Centers for Medicare and Medicaid Services (CMS) and through litigation in federal courts.

If CMS finds that a state is out of compliance with federal rules, the agency can work with the state to come into compliance. If states fail to come into compliance, CMS can provide notice of opportunity for a hearing and then move to withhold some or all federal matching funds until the state comes into compliance. However, the authority to withhold federal funds is rarely used because it is a very broad and blunt tool that could impede a states’ ability to come into compliance. One recent example of CMS working with a state: In July 2022, CMS used a mitigation plan to help address application processing times and backlogs of pending applications in Missouri. By September, officials responded that the state was in compliance with federal requirements for processing times. However, federal enforcement is generally not quick and the federal agency has discretion about when it steps in, unlike courts where a decision can result in immediate action.

While there is no private right of action in the Medicaid statute, a civil rights statute, Section 1983, has long provided a mechanism for individuals to enforce the rights provided to them under federal programs. There is a long history of litigation related to private enforcement of the Medicaid Act. While courts have affirmed the authority for individuals to use Section 1983 to protect Medicaid rights, the Supreme Court has issued decisions that have narrowed this authority. Currently there is a three pronged (pursuant to the cases Blessing v Freestone (1997)) and (Gonzaga University v. Doe (2002)) that courts use to evaluate whether a federal law establishes an enforceable right. The three factors that determine whether a statutory provision creates a privately enforceable right are: (1) whether the plaintiff is an intended beneficiary of the statute; (2) whether the plaintiff’s asserted interests are specific enough to be enforced; and (3) whether the statute imposes a binding obligation on the State.

Federal circuit courts have generally upheld private enforcement of rights for Medicaid enrollees (particularly in cases where the state has denied Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefits, enrollment, or care in the least restrictive setting). On the other hand, courts have also ruled that providers and enrollees do not have enforceable rights to sue for inadequate payment rates. The Courts of Appeal have issued conflicting rulings in cases brought by patients challenging a state’s decision to exclude Planned Parenthood from their Medicaid Program. The Court has previously refused to review multiple cases in which Planned Parenthood patients were found to have an enforceable right, but there is a petition currently pending.

In 2019 there were four circuit court opinions that all ruled in favor of beneficiaries right to enforce Medicaid provisions. However, during 2020, three of four circuit court decisions did not rule in favor of Medicaid enrollees, including in Planned Parenthood of Greater Texas v. Smith (2020), where the full 5th Circuit overruled a previous panel decision in Gee v. Planned Parenthood of Gulf Coast Inc. (2017) and concluded that that Medicaid patients do not have the right to challenge Texas’s decision to exclude Planned Parenthood from the state Medicaid program.

What is at Stake?

Numerous amicus briefs have been submitted in support of both parties. Indiana filed a brief joined by a number of other states, supporting Marion County and noting that that private rights of action can upset the dynamics of the state and federal administration of grant programs. The American Health Care Association and Indiana Health Care Association also filed an amicus brief supporting the county, arguing that Congress did not intend to create a private right action against public actors under Section 1983. The brief suggests it would create disparate treatment since private entities are not subject to damages under laws governing nursing facility participation in Medicare and Medicaid programs.

At the end of September, 25 amicus briefs were filed supporting Talevski. Briefs were filed by the National Health Law Program (NHeLP), other advocacy organizations, professors, and scholars; population groups (including the AARP, American Cancer Society and Bazelon Center), provider groups (including public hospitals and community health centers), and federal officials (former HHS officials and former / current members of Congress). Both NHeLP and George Washington University compiled summaries of these briefs. Key points raised in these briefs include the following:

  • The case could overturn over five decades of judicial precedent and undermine Congressional intent that individuals are able to use federal courts to enforce rights under federal programs.
  • If enforcement is left to HHS, millions of Americans could be at risk because federal enforcement is not adequate due to limited capacity and funding.
  • A decision to limit the ability of individuals to sue in federal court could deprive millions of Medicaid enrollees’ access to care, including children who are entitled to comprehensive coverage under EPSDT benefit and those with chronic conditions, serious life-threatening diseases and people with disabilities.
  • The Court’s decision could affect the rights of millions of low-income Americans who rely on other Spending Clause programs, not just Medicaid.

What is Next?

The federal Solicitor General and the state of Indiana were granted approval to participate in oral arguments. The Supreme Court is currently scheduled to hear oral arguments for this case on November 8th and is expected to issue a ruling by the end of the term in June 2023. Separately, the Indiana Public Access Counselor issued an advisory opinion that HHC’s decision to petition the Supreme Court violated the state’s the Open Door law because HHC did not seek public input. Morgan Daly, the public policy director for the Indiana Statewide Independent Living Council, filed the open-door complaint with the hope that the HHC board will hold a vote and potentially withdraw the petition. It is unclear how this will affect the case, which could have implications far beyond Marion County and Indiana.

A SCOTUS nursing home case could limit the rights of millions of patients

NPR Shots, November 6, 2022

In court filings, the Talevski family claims that her father was overmedicated to keep him asleep, his dementia wasn’t properly managed, and he was involuntarily transferred to different facilities hours away from the family’s home, which accelerated his decline. Gorgi Talevski died a year ago, in October.

Talevski sued the Health and Hospital Corp. of Marion County, the public health agency in Indiana that owns the nursing facility. . .

Since the Supreme Court agreed to look at the case, 25 entities filed amicus briefs, which provide courts information from people not directly involved in a case. Most of them sided with the Talevskis — including current members of Congress like House Speaker Nancy Pelosi and Majority Whip James Clyburn, AARP, American Cancer Network, American Public Health Association, and Children’s Health Care Providers and Advocates.

Why a Nursing Home Case Heard by SCOTUS Could Have Sweeping Implications

Skilled Nursing News, November 4, 2022

Larger implications surrounding a nursing home case to be heard by the U.S. Supreme Court on Nov. 8 has both operators and civil rights activists anxiously awaiting a decision. . . Far-reaching questions regarding Medicaid beneficiaries and their rights in federal court are on the table too. In other words, a ruling in favor of state-owned nursing homes could make it harder for Medicaid beneficiaries to seek relief in federal court when they believe their rights are being violated by state officials.

Issue #112 – October 31, 2022


In the Spotlight are two blogposts published this week by Dave Kingsley of Tallgrass Economics. Dave has been engaged in analyzing the byzantine system of long-term care economics, financing, and politics since the early 1980’s. He is one of the principals of Tallgrass Economics, based in the Kansas City, whose purpose is demonstrating “how economies [should] best serve the needs of “the people,” rather the needs of a tiny, wealthy minority. (https://tallgrasseconomics.org/about).

The blogs lay out how corporate entities and investor groups which control a sizable portion of nursing homes in this country take advantage of ways to structure business operations, the vagaries of Medicare and Medicaid funding, and lax public oversight. The blogs, The Ensign Group, America’s Largest Nursing Home Corporation, Reports Strong Third Quarter 2022 Results and In the Nursing Home Business, Medical Care Versus Financial Performance Is an Important Dimension, have been posted on https://tallgrasseconomics.org/.

While the analysis is focused on The Ensign Group (Nasdaq:  ENSG), a California based entity which has 268 health care operations in 13 states and over 400 subsidiaries incorporated in Nevada, the issues are ones found throughout the country including Massachusetts.

Issue #111 – October 24, 2022

Spotlight – Shaya French and R Feynman: Recipients of Policy Leadership Award

Citizens’ Housing & Planning Association (CHAPA)

Two Dignity Alliance Massachusetts participants were honored this month by the Citizens’ Housing & Planning Association with the Policy Leadership Award.
Shaya French is a Senior Community Organizer with the Boston Center for Independent Living (BCIL) for the past five years. Leading efforts at BCIL, they have increased the annual allocation for the Alternative Housing Voucher Program from $4.6 million to $14.2 million. They have also prevented cuts to the MBTA’s paratransit service, helped preserve the Affordable Care Act, and advocated for the maintenance funding to create 25 accessible units a year in Massachusetts.
R Feynman has been the Senior Community Organizer with the Disability Policy Consortium for the past three years. Their focus is on increasing housing support for low-income people with disabilities, improving accessibility of existing housing, and fostering connections between disability groups at the municipal level. They have also worked on food insecurity, the intersection of transness and disability, and disability issues within environmental justice. Prior to organizing professionally, R was an experimental physicist, but the ableism they encountered pushed them towards advocacy.

Issue #110 – October 17, 2022

Issue #109 – October 10, 2022

Issue #108 – October 3, 2022

Spotlight – Data on Ownership of Nursing Homes

Centers for Medicare and Medicaid Services

CMS has released data giving state licensing officials, state and federal law enforcement, researchers, and the public an enhanced ability to identify common owners of nursing homes across nursing home locations. This information can be linked to other data sources to identify the performance of facilities under common ownership, such as owners affiliated with multiple nursing homes with a record of poor performance. The data available on nursing home ownership will be posted to data.cms.gov and updated monthly.

Issue #107 – September 26, 2022

Special Edition – Issue #106 – September 12, 2022

Issue #105 – September 5, 2022

Spotlight – State Department of Health Announces Reorganization and Emphasis on Health Equity, Aging & Emergency Preparedness to Advance Public Health Protections In New York

The New York State Department of Health, July 29, 2022

The New York State Department of Health announced new efforts to better promote and protect the health of all New Yorkers. A strategic planning effort led by Commissioner Dr. Mary T. Bassett focused on optimizing the Department’s talent, workflow and collaboration, the integration of new systems, and increasing diversity as part of its overall mission to build a healthier, more equitable New York. To achieve this goal, the Department has established an Office of Aging & Long Term Care, an Office of Health Equity & Human Rights, a Chief Medical Officer, and established a leadership cabinet. Additionally, Dr. Bassett is prioritizing agencywide data sharing and use to drive policies, and a renewed emphasis on regional offices’ engagement with local health departments.
The Department’s rebuilding effort landed on five focus areas:

  • Invest in our people, bring in new and diverse talent, simplify hiring processes, and create a culture of support and appreciation after the significant sacrifices made during COVID response.
  • Shape our organization so that it reflects our focus on health equity, the needs of older New Yorkers, emergency preparedness and response.
  • Become more proactive by developing policy coordination and project management capabilities and simplifying critical processes.
  • Align public health, insurance, and regulatory tools across divisions to maximize impact and improve health outcomes.
  • Improve our use of data to advance our mission of improving public health and health equity.

“Public health touches every facet of our lives,” State Commissioner of Health Dr. Mary T. Bassett said. “Our new organizational focus and leadership team structure will better position the Department to shape our priorities and delivery systems to improve health access and outcomes for all New Yorkers. The scope of this Department extends beyond traditional public health and comprises a regulatory function for health care delivery institutions and health insurance programs that provide coverage to over one-third of New Yorkers. In my tenure as commissioner, I intend to do my utmost to fulfil our mandate. New Yorkers deserve no less.”
Since becoming Health Commissioner, Dr. Bassett has sought to optimize cross-functional collaboration, recruit and retain a more diverse workforce, elevate health equity and the needs of older New Yorkers, foster a culture of inclusivity, and prioritize using data to drive public health decisions. She has also sought out ideas from staff, the backbone of the Department. A staff survey, focus groups and multiple conversations were essential to understanding the challenges the Department faces and how to address them.”
The main changes include:

  • Creating a new Office of Health Equity & Human Rights. This office will address health disparities and work to improve diversity, equity, and inclusion within the Department. It will be comprised of the current offices of Minority Health and Health Disparities Prevention and Language Access, the AIDS Institute, and the Office of Gun Violence Prevention. The new Office of Health Equity & Human Rights will be led by Deputy Commissioner Johanne Morne.
  • Creating a new Office of Aging & Long Term Care. This office will develop policies and programs to meet the needs of older New Yorkers and people with disabilities who require long term care services and support. It will be led by Adam Herbst, Deputy Commissioner on Aging & Long Term Care and work collaboratively with the Office of Health Insurance Programs, the Office of Primary Care and Health Systems Management, and the NYS Office for the Aging to coordinate Department activities related to aging New Yorkers. The Office will be responsible for long-term care functions related to licensure, facility surveys, data collection, and policies and analysis. In addition, it will help develop and execute the State Master Plan on Aging to improve the recruitment, retention, and training of long-term care workers, and improve the quality of long-term care.
  • Establishing a Chief Medical Officer. Dr. Eugene Heslin will provide medical and clinical expertise to all senior leadership and various Department staff. Dr. Heslin has over 30 years in the field of medicine and is an expert in health care leadership, policy development and operational management centered on improved patient outcomes.
  • Creating a new Commissioner’s Cabinet. It will be comprised of dynamic policy and health experts who will report directly to and serve as advisors to State Health Commissioner Dr. Mary T. Bassett on important issues as we develop programs and new policies throughout the Department that will protect, improve, and promote the health of New Yorkers. The Executive Cabinet members are: Laura Mascuch, Chief of Staff; Kristin Proud, Acting Executive Deputy Commissioner; Dr. Ursula Bauer, Deputy Commissioner for Public Health; Dr. Eugene Heslin, First Deputy Commissioner and Chief Medical Officer; Sam Miller, Associate Commissioner for External Affairs; Kathy Marks, General Counsel; Amir Bassiri, Deputy Commissioner of the Office of Health Insurance Programs and Acting Medicaid Director; Adam Herbst, Deputy Commissioner Aging & Long Term Care; Dr. John Morley, Deputy Commissioner of Primary Care and Health Systems Management; Johanne Morne, Deputy Commissioner Health Equity and Human Rights; Diane Christensen, Deputy Commissioner Administration; and Danielle Holahan, Executive Director, NY State of Health and Senior Advisors, Megan Baldwin, Paul Francis and Sandra Mullin.
  • Strengthening the Regional Offices. There will also be a concerted effort to make sure our regional offices are more integrated into public health policy making and that they prioritize the needs of local health departments. Regional Offices will now be a part of the Office of Public Health, which will strengthen the voice of local perspectives in our policy making and streamline local policy and program implementation.

These new focus areas will guide the Department’s work over the next 3 years. Our goal is to improve health equity and reduce disparities across racial, ethnic, and socioeconomic groups while leveraging data to inform policies and improve health outcomes. We will work to reduce our chronic disease burden through effective public health programs and new care models. The Department will also continue to use the latest technology and communication platforms to disseminate critical public health information to the public and help protect them from preventable diseases and illnesses.
Additional highlights of the Department rebuild include improving data capabilities and data use that are integral to advancing its mission; increasing communications, policy and data support for chronic disease programs; and establishing a new operating model for the Office of Health Emergency Preparedness. The Department will place more attention on recruiting, hiring, and growing our workforce, while also ensuring current employees have the resources and support, they need to effectively protect the health of all New Yorkers.

Dignity Alliance Member in the News: Margaret Morganroth Gullette

Ageism’s Toll in the Age of COVID

Harvard Radcliff Institute, September 1, 2022

 Margaret Morganroth Gullette ’62, PhD ’75, BI ’87 is one of the nation’s leading voices on the negative impacts and violence of ageism. Gullette, 81 and a resident scholar at the Women’s Studies Research Center of Brandeis University, is the author of Ending Ageism, or How Not to Shoot Old People (Rutgers University Press, 2017), which won the MLA Prize for Independent Scholars and the Society for the Psychology of Women’s Florence L. Denmark Award for Contributions to Women and Aging. One of her oft-repeated refrains is “Fear ageism, not aging,” and she is working on her next book, “American Eldercide.”

What is ageism? And why is it so important now?

We need to consider the immense power of ageism. I’ll start with just two aspects. People internalize the stereotypes of decline—the decline attributes that America culture associates with growing older—and this involves warding off their own personal bodily or economic decline. Another type is behavioral, and that means hating or shunning older people. These two types ascribed to Trump can explain why his first policy decision about COVID was to do nothing for nursing home residents. That was disastrous.

Why does ageism matter now, as COVID wanes?

It matters because we have seen it at the highest levels of government, we have seen it in many state governments’ responses to COVID, and we saw it in the triage guidelines adopted early on by hospitals, many of which used age to exclude people from access to ventilators. Ageism, the ageisms plural, really, cause a spectrum of damages—including internalized shame and job discrimination at early ages. …and “compound ageism,” as I call it, is what some people felt toward nursing facility residents. A particular form of intersectionality. It was a compound of they’re old, they’re sick, they’re poor, they’re women, they have cognitive impairments, they have mental health issues. Compound ageism is a very toxic prejudice. To be fair, people who are ageist aren’t necessarily also ableist, classist, racist, sexist, et cetera. They have overcome some of the other biases. And I keep in my heart families who lost loved ones in the facilities. They were heartbroken—separated from them by the lockdowns. Unable to have real funerals. A million mourners know their relatives could have lived longer, should have survived.

But in general, Americans seem to be responding to the plight of those residents with indifference, if not alienation.

Why might people respond this way?

The early part of the COVID Era was terrifying—I mean, it terrified the CDC. It should have terrified CMS, which is responsible for the residents. It terrified the doctors in the hospitals. It terrified people in rural communities, where half of the hospitals had no ICUs, and it terrified normal people, some more than others. People had a lot to focus on in their own personal lives: worry about their children, their parents, their jobs. Social cohesion weakened; those anxieties grew. People have a tendency to back away from more trouble, more sorrow, more misery. They protect themselves. And psychoanalysis says we protect ourselves from aging and dying. A lack of empathy makes ageism harder to fight even as COVID waxes and wanes.

Why does it make it harder to fight?

You catch me at a discouraged moment. I’ve been active in a group, Dignity Alliance Massachusetts. They’re wonderful people: they’re dedicated, they’ve been in this for two years. They supported 67 bills in the state legislature for people with disabilities and those who will need long-term care. And the legislature went off and ended their session without dealing with a lot of things, including nursing homes. Despite the scandals in this state, they left without passing a nursing facility reform bill. In the national can be distinct.

You believe Donald Trump’s presidency resulted in abandoning the residents of nursing homes, and that COVID played a large role in increasing the stigmas around growing old in America. Can you elaborate?

Yes, Trump’s ageism was lethal. He exemplified both types. He is a typical idolater of youth, including, of course, his own lost youth. He has fake blonde hair, the fake tan. Youth emulation drives significant behaviors. He owned the Miss America Pageant for years, he remarried younger women, he fathered a child at age 60, and he spoke with boisterous bluster of his sexual assaults on Access Hollywood. Experts told him that the young were dying of COVID too, but he said, “Ah, they have a helluva immune system.”

And as president, he was an ageist in this other sense, in shunning older people. He had a chain in his mind linking dementia and disability and expendability and old people. In 2020, everyone knew the residents of nursing homes and older adults had been dying in appalling numbers. He literally did not count them. At the end of August 2020, the Centers for Disease Control and Prevention [CDC] was estimating that nearly 200,000 people had died, and he retweeted a claim that the deaths due to COVID were really only 9,000, since “most of the deaths are very old Americans with comorbidities.”

Politics, of course, required that he minimize the numbers because he chose to minimize the pandemic, but only ageism and ableism decided whom he would count. This is more important than everyday ageism—yours or mine—because he had power at the top of the political hierarchy to dissociate himself from the nursing home residents. More could have been saved had the Centers for Medicare & Medicaid Services [CMS] immediately provided tests and PPE [personal protective equipment] and monitored the staffing ratios, thus keeping residents safe and out of the overwhelmed ICUs [intensive care units]. So, ageism rather than incompetence or any other reason that has been ascribed to Trump can explain why his first policy decision about COVID was to do nothing for nursing home residents. That was disastrous.

Why does ageism matter now, as COVID wanes?

It matters because we have seen it at the highest levels of government, we have seen it in many state governments’ responses to COVID, and we saw it in the triage guidelines adopted early on by hospitals, many of which used age to exclude people from access to ventilators. Ageism, the ageisms plural, really, cause a spectrum of damages—including internalized shame and job discrimination at early ages. …and “compound ageism,” as I call it, is what some people felt toward nursing facility residents. A particular form of intersectionality. It was a compound of they’re old, they’re sick, they’re poor, they’re women, they have cognitive impairments, they have mental health issues. Compound ageism is a very toxic prejudice. To be fair, people who are ageist aren’t necessarily also ableist, classist, racist, sexist, et cetera. They have overcome some of the other biases. And I keep in my heart families who lost loved ones in the facilities. They were heartbroken—separated from them by the lockdowns. Unable to have real funerals. A million mourners know their relatives could have lived longer, should have survived.

But in general, Americans seem to be responding to the plight of those residents with indifference, if not alienation.

Why might people respond this way?

The early part of the COVID Era was terrifying—I mean, it terrified the CDC. It should have terrified CMS, which is responsible for the residents. It terrified the doctors in the hospitals. It terrified people in rural communities, where half of the hospitals had no ICUs, and it terrified normal people, some more than others. People had a lot to focus on in their own personal lives: worry about their children, their parents, their jobs. Social cohesion weakened; those anxieties grew. People have a tendency to back away from more trouble, more sorrow, more misery. They protect themselves. And psychoanalysis says we protect ourselves from aging and dying. A lack of empathy makes ageism harder to fight even as COVID waxes and wanes.

Why does it make it harder to fight?

You catch me at a discouraged moment. I’ve been active in a group, Dignity Alliance Massachusetts. They’re wonderful people: they’re dedicated, they’ve been in this for two years. They supported 67 bills in the state legislature for people with disabilities and those who will need long-term care. And the legislature went off and ended their session without dealing with a lot of things, including nursing homes. Despite the scandals in this state, they left without passing a nursing facility reform bill. In the national media, there was some coverage, but it didn’t amount to a campaign, “Old Lives Matter.” So, this is not encouraging. This is the year to fight back against the causes of all those premature deaths—170,000 is one figure—in nursing homes. We know a lot about what happened. We know that 70 percent of 15,400 US nursing home facilities are owned by for-profit organizations, and some by hedge funds. Evidence shows they care more about the bottom line than about the health and well-being of their residents. There was understaffing and neglect, and people died. Much understaffing was not because aides fell ill—they could have been protected too—it was unnecessary. Actually, you catch me at a pitch of anger at the debased culture of feeling in this country. Anger is at least better than discouragement.

I hold on to the belief that many good, caring people will function in higher gear now. My own field, age studies, and gerontology are exposing the evils. We have an age-friendly cities movement; we have not just AARP but nonprofits like Justice in Aging and the disability rights organizations. That’s where the action is. You have got to go to the law to fight some of these things, particularly if legislators will not do their job. We already have laws on the books. One of the candidates for state attorney general said she was going to look at all the age-related regulations in Massachusetts; update and monitor them; and go to court if need be to rectify injustices.

I like the term “age justice.” There’s more reason to get on board with it now. Age is not a trivial categorization. Ageism is serious—as serious as sexism, as serious as racism. In the minds of people of conscience and in the behaviors of people of conscience, it should rank with those. Indeed, it could matter more, because it is a prejudice that targets anyone lucky enough to grow old.

Comments can be sent to Margaret at mgullette@msn.com

Issue #104 – August 29, 2022

Spotlight – When Private Equity Takes Over a Nursing Home

New Yorker, August 25, 2022

By Yasmin Rafiei

[Editor’s note: This article is recommended to be read in its entirety]

After an investment firm bought St. Joseph’s Home for the Aged, in Richmond, Virginia, the company reduced staff, removed amenities, and set the stage for a deadly outbreak of COVID-19.

When St. Joseph’s Home for the Aged, a brown-brick nursing home in Richmond, Virginia, was put up for sale, in October 2019, the waiting list for a room was three years long. “People were literally dying to get in there,” Debbie Davidson, the nursing home’s administrator, said. The owners, the Little Sisters of the Poor, were the reason. For a hundred and forty-seven years, the nuns had lived at St. Joseph’s with their residents, embodying a philosophy that defined their service: treat older people as family, in facilities that feel like a home. . .

In the spring of 2021, an offer materialized from the Portopiccolo Group, a private-equity firm based in Englewood Cliffs, New Jersey, which then had a portfolio of more than a hundred facilities across the East Coast. “They said they like to keep things the way they are,” Sister Mary John told me.

The deal was finalized by June. Portopiccolo’s management company, Accordius Health, was brought in to run the home’s day-to-day operations. . .

Since the turn of the century, private-equity investment in nursing homes has grown from five billion to a hundred billion dollars. The purpose of such investments—their so-called value proposition—is to increase efficiency. Management and administrative services can be centralized, and excess costs and staffing trimmed. In the autumn of 2019, Atul Gupta, an economist at the University of Pennsylvania, set out with a team of researchers to measure how these changes affected nursing-home residents. They sifted through more than a hundred private-equity deals that took place between 2004 and 2015, and linked each deal to categories of resident outcomes, such as mobility and self-reported pain intensity. The data revealed a troubling trend: when private-equity firms acquired nursing homes, deaths among residents increased by an average of ten per cent. “At first, we didn’t believe it,” Gupta told me. “We thought that there was a mistake.” His team reëxamined its models, testing the assumptions that informed them. “But the result was very robust,” Gupta said.

Cost-cutting is to be expected in any business, but nursing homes are particularly vulnerable. Staffing often represents the largest operating cost on a nursing home’s ledger. So, when firms buy a home, they cut staff. However, this business model has a fatal flaw. “Nurse availability,” Gupta and his colleagues wrote, “is the most important determinant of quality of care.”. .

The situation is growing more urgent. One in six Americans is sixty-five or older; by 2035, adults over sixty-five are expected to outnumber children for the first time in U.S. history. According to a report by IBISWorld, a market-research firm, this demographic shift—the “silver tsunami,” as it’s been called—will increase revenues in the United States’ nursing-home industry by twenty-five per cent in the next five years. Private-equity firms currently own only eleven per cent of facilities, as a federal report found. But about seventy per cent of the industry is now run for profit. “They all have the same operational approach, the same strategies for making money,” Harrington said. “It’s just that private equity tends to have higher expectations for profits.”. .

There’s an active debate over whether nursing-home deterioration is caused by private-equity acquisition, as senior-care advocates contend, or if private-equity firms tend to acquire homes that are already deteriorating. . .

Under the Little Sisters, the home had been lightsome and bustling. I could scarcely walk a few steps in the hallways without someone saying hello. “They came by to check on you, to see if there was anything you needed, how things could work better,” a resident told me. In the hallway, a television had blasted Dolly Parton’s “God Bless the U.S.A.,” and a nurse breezed by me, belting out the lyrics. I’d passed smiling women, their hair in curls from the salon, in the common area. When I’d told them they looked pretty, one had held a single finger to her mouth. She was watching television, and I was interrupting her. Now the home was dimly lit and startlingly vacant. Signs of neglect were everywhere: a collapsed ceiling in a common room, its fragments strewn across the carpet; detergent scattered across the laundry room; tools and machine parts littered near equipment in need of repair. The resident who had waited an hour and a half for oxygen last June had requested a repair for the call light outside her room. Staff gave her a Schwinn bicycle bell and instructed her to ring it if she needed help. (Portopiccolo’s spokesperson said that they have no records of this incident.) I asked the son if anything had improved in the past few weeks. “Nurse staffing is better now,” he said, “because people have died.”

Spotlight – How Nursing Homes Can Hide Profits While Claiming Losses and How This Impacts Residents

The New Jersey Long Term Care Ombudsman program has produced  a webinar with Ernest Tosh, an attorney and analyst who specializes in the relationship between nursing home finances and resident care. The video presentation contains easy-to-understand graphics and explanations. Attorney Tosh clearly describes how nursing homes are able to report financial losses to regulators while actually funneling substantial funds to parent companies and other related parties. He also explains how private equity is involved in some nursing homes’ operations and how all of these financial dynamics impact staffing and resident care. Finally, he summarizes existing financial reporting requirements and proposes changes to achieve real, needed fiscal transparency for this industry.

View the Webinar on nursing homes hiding profits and claiming losses. It runs 1 hour 39 minutes.

View the PowerPoint slides without narration on nursing homes hiding profits and claiming losses.

Thanks to our colleagues at the Long-Term Care Community Coalition in New York for making this information known to us.

Issue #103 – August 22, 2022

Spotlight – How Long Will the U.S. Continue to Disrespect Its Caregivers?

New York Times (free access), August 17, 2022
By Ai-jen Poo
Ms. Poo is the executive director of Caring Across Generations and the president of the National Domestic Workers Alliance.

On Tuesday President Biden signed the Inflation Reduction Act, which contains parts of his Build Back Better agenda, including major climate investments and authorization for Medicare to negotiate lower prescription drug prices. The law will reduce the cost of health care, slash carbon emissions to roughly 50 percent below 2005 levels by 2030, invest in clean energy vehicles and raise taxes on corporations, among other things.

Make no mistake, President Biden and the Democrats in Congress have achieved a transformative investment in our future.

But investments in Medicaid home and community-based services for older adults and people with disabilities, raising wages for the work force that provides caregiving, four weeks of paid family and medical leave, and subsidies for families in need of childcare did not make it into law.

Infrastructure isn’t only sustainable modes of transportation. As Senator Bob Casey recently said: “The bridge to work for many is someone who can come into their home and care for aging parents. For others, it’s quality, affordable childcare for their kids.” Fair pay for caregiving would free up more Americans to take part in the economy.

For too long we have underinvested in and undervalued caregivers. After the coronavirus pandemic hit, a breakthrough seemed possible when policies intended to help families became the focus of a national conversation.

A 2020 report by AARP and the National Alliance for Caregiving found that more than one in five Americans were caregivers and almost one in four of these was caring for more than one person. A more recent study by The Associated Press-NORC Center for Public Affairs Research showed that a vast majority of Americans want to age at home and want the government to act to help them do so.

But we can hardly sustain the existing home care work force with workers’ current median annual income just over $18,000 per year. What will we do when the aging baby boomer generation — roughly 73 million people — needs more support and services?

There are more than 12 million working parents with children younger than 6 years old. Without access to paid leave, these parents must find affordable childcare in order to work and provide for their families. The American Rescue Plan Act included funding to stabilize childcare programs for low-income families and expanded the child tax credit for 2021, but what will happen when that funding runs out?

Lawmakers must now decide how to support the care economy — including administrative and regulatory reforms as well as legislation. We should see investments in care reflected in appropriations and at the heart of the next budget reconciliation. Many voters want representatives who refuse to devalue women and families and who want caregivers to have the freedom to choose whether they leave the work force rather than be forced out of it.

The Biden administration’s economic agenda has often been compared to Roosevelt’s New Deal in scope and significance, but the New Deal explicitly excluded two groups of workers — farm workers and domestic workers. Over time, these domestic workers became the backbone of the care economy, but the government never advanced comprehensive solutions to support them.

Mr. Biden’s original agenda not only included these workers, but it highlighted the importance of investing holistically in the care that families need and the jobs that support it. Today, we understand that the economy doesn’t grow or work without care, including for the work force entrusted with the people who matter most in our lives. Let’s not wait another 80 years to act on that vision.

Spotlight – The Netherlands makes aging and long-term care a priority. In the US, it’s a different story.
The Dutch offer hard-won lessons for a “fragmented” US system.

Boston Globe, August 18, 2022
By Rob Weisman

A demographic tidal wave looms. By 2040, one in four Dutch residents will be over 65. The same “silver tsunami” is building in much of the developed world, including the United States. And it will strain the budgets and test the ingenuity of nations.

Here in the Netherlands, a social welfare state roughly twice the size of Massachusetts, leaders have been planning for this graying of society for a half century. Drawing on public funds, a sense of shared responsibility, and compulsory insurance premiums paid throughout their working lives, those born in the post-World War II baby boom take for granted that they’ll have the home and nursing care they need as they age. . .

In the United States, it’s a far different story. The question of who will take care of older Americans, and who will foot the bill, keep many awake at night. A scathing report in April from the National Academies of Sciences described the US long-term care system as “ineffective, inefficient, [and] fragmented.” The wealthiest can afford quality care; those with less money must navigate a Byzantine system that forces them to spend down their savings to get a nursing home bed. . .

The Dutch use the word solidariteit, or solidarity, to describe their commitment to older residents. The Netherlands was the first country in Europe to introduce a mandatory long-term care system in 1968. It has updated and refined its plan several times since, holding to its vision of universal care even as it relies more on managed competition between nonprofit providers and insurers to control costs. The most recent overhaul, in 2015, aims to help residents age in place. .

The cost of the Dutch system is enormous. The Netherlands spends over 4 percent of its gross domestic product on long-term care, more than any other advanced country, according to the Organization for Economic Cooperation and Development. The equivalent expenditure in the US would top $800 billion per year, more than what is now spent on Medicare, which doesn’t cover long-term care. Mandatory payroll deductions for elder care, including contributions from employers, amount to as much as 9.6 percent of income for Dutch workers.
By contrast, the US spends about 1.5 percent of its GDP on late-in-life care — less than any Western European country, Canada, or Japan — and has no national insurance program. Fewer than 7 percent of Americans over 50 have private insurance for long-term care. . .

Unlike in the US, where most nursing homes are operated for profit, almost all in the Netherlands are nonprofit institutions. Residents who paid into the system earlier in life are admitted based on their health indications, not bank balances. They live rent-free but, depending on their financial means, can be required to make small contributions. This kind of egalitarian system prevents the class stratification seen in American nursing homes, which attract people of similar income levels. . .

The Dutch are intensely interested in finding ways to connect nursing homes with older folks living nearby, so moving to more intensive treatment doesn’t come as a shock. They also work hard to keep people at home as long as possible, with help from local governments. . .

Two years ago, The Hague became the nation’s first city to win the World Health Organization’s “age-friendly” designation. It spends over $180 million a year to address the needs of local residents over age 65, who make up 20 percent of the population. . .

But data suggest that big spending pays dividends in happier, healthier, and longer lives. Life expectancy averages 82.2 years in the Netherlands, compared to an average of 78.8 in the US, according to the OECD. Multiple factors play into life spans, but the gap is meaningful.

Issue #102 – August 15, 2022

Issue #101 – August 8, 2022

Spotlight – The Legislature’s Missed Opportunity – Failure to Reform Nursing Homes in Massachusetts

CommonWealth Magazine, August 4, 2022
By former State Senator Richard T. Moore, Chair Dignity Alliance Massachusetts Legislative Workgroup and Member, DignityMA Coordinating Committee

Much has been written about the legalization of Sports Betting in the Commonwealth. The introduction of this much-debated and formerly illegal past-time is a tribute to the power of the gambling industry in Massachusetts!

With the conclusion of the Legislature’s formal sessions, a bill that would have taken some of the gamble out of receiving quality care for residents of nursing homes across the state, languished for nearly two months in the House Committee on Ways and Means. The lack of movement of this vitally important bill is a testament to the power of the nursing home industry!

House Bill 4780, An Act to improve quality care and oversight in nursing homes, was crafted in, and favorably reported by, the Legislature’s own Committee on Elder Affairs – a group of thoughtful lawmakers who know a lot about the long-term care needs of older adults and people with disabilities. Senator Pat Jehlen and Representative Tom Stanley deserve great credit for developing this bill. The bill also was favorably reported by the Committee on Health Care Financing, which I once chaired.

Among many needed reforms for nursing homes, House 4780 would have:

  • Improved the safety and quality of nursing home care, treating residents with DIGNITY! 
  • Strengthened the licensure of nursing homes to ensure reputable owners! 
  • Expanded workforce training to achieve consistent quality of care! 
  • Implemented annual audits to ensure nursing home funds are being utilized in the best interests of residents!
  • Required customized outbreak response plans, including at least a part-time infection preventionist, to protect nursing home residents from ever again experiencing the devastation they suffered from the COVID-19 pandemic!

Dignity Alliance Massachusetts, a statewide coalition of advocates, supports the bill, and believes that this measure, with a few targeted changes, could have resulted in transformational change in long-term care. It might also have justified the hundreds of millions of tax dollars provided in recent years to nursing homes, the vast majority of which are for-profit, investor-owned, out of state companies with a dismal track record for providing residents with dignity and quality care! Some of these companies have even had the temerity to sue the state to prevent enforcement of a regulation that limits nursing homes to no more than two residents per room, This, despite the likelihood that higher occupancy served to spread COVID to more elders and staff.

For more than two decades various media, including both Commonwealth and the Boston Globe have detailed that tragedy of nursing home care both before, and during the pandemic. Despite such effective reporting and editorials, despite advocacy by families of residents and advocate groups like Dignity Alliance and AARP, despite the national publicity about the number of deaths in nursing homes, it is shocking that Massachusetts nursing homes have not been reformed, and that staff remain overworked and underpaid.

As a recent survey by AARP makes clear, the problems of COVID in nursing homes have not gone away and, in fact, continue to cry out for action. The survey found “The rate of resident cases increased by 27 percent in the four weeks ending June 19 compared to the previous four weeks, with about 1 out of every 35 nursing home residents testing positive for COVID-19. The rate of staff cases increased by 42 percent, with around 1 staff member for every 28 residents testing positive. More than one-third of nursing homes nationwide reported a confirmed resident case during the four weeks, while two-thirds reported a confirmed staff case.

In an apparent insult to the thousands of older adults who were sickened or died from COVID in Massachusetts during the pandemic, the Legislature even failed to pass House Bill 4672 establishing a COVID-19 Remembrance Day! How soon we’ve forgotten this tragic event should prove the need for such a day. However, in this case, there still may be time to enact the bill during informal sessions before the end of the year.

Can there be any evidence-based excuse for such a catastrophic failure from lack of care and accountability by nursing homes or the dereliction of policy makers to require action? How much longer will nursing home residents and front-line caregivers suffer and die from poor quality care and lack of accountability, while state and federal governments line the pockets of the nursing home industry, and those empowered to change the law campaign for the votes of older adults pledging to improve their lives!

The author is a former member of the Legislature and served as Senate Chair of the Committee on Health Care Financing. Although he is a co-founder of Dignity Alliance, Inc, the views expressed in this article are not necessarily those of the coalition or its participants.

Issue #100 – August 1, 2022

Spotlight – we asked our readers three questions about the notion of dignity and their involvement with Dignity Alliance

What does “dignity” mean to me?

Jerry Halberstadt, Stop Bullying Coalition:

Treating all humans with respect and decency

Dignity is the ability to make your own choices and determine the course of your own life. Achieving dignity requires having the necessary supports to make those choices real.

Colin Killick, Disability Policy Consortium:

Dignity is the ability to make your own choices and determine the course of your own life. Achieving dignity requires having the necessary supports to make those choices real.

Why the advocacy promoted by Dignity Alliance Massachusetts is important to transform long-term care in facilities and in the community.

Sandy Alissa Novack, MBA, MSW, LICSW, ACSW, CSW-G

My name is Sandy Alissa Novack, and I have been a contributor to Dignity Digest since the first issue. I grew up in a family of readers with relatives who regularly kept up-to-date with the news and liked sharing information. My mom used to draw me pictures and also clip interesting scenes from magazines or stories and put them in my Peanuts lunchbox along with my packed lunch as a child, and in college my parents would mail me all kinds of interesting articles they had read they either thought would be useful for me, make me chuckle, or be inspirational. I grew up liking to do the same thing for others; in Dignity Alliance’s case, sharing articles of importance on aging and disability, long-term care, and community living, and of course the pandemic. I draw on the practical, inspirational and the items that tug at the heart. One of my “finds” you may have already listened to, but I feel it has more depth the more I listen to it; it is country singer Brett Eldredge’s song called Raymond, about a man working in a long-term care facility where an elder with dementia mistakes him for her son, and he gladly takes it upon himself to fill in as lovingly as if he were her son.  At the intersection of aging, disability, military service, family and caregiving, the song moves me every time I listen to it (https://tinyurl.com/RaymondByBrettEldridge).

By the way, everyone is invited to share articles, webinar registration information, and more for the weekly Dignity Digest. If something interests you, you can bet it may interest many of the hundreds of other readers of the Dignity Digest, so send it along to us to consider, as space allows, for publication to paul.lanzikos@gmail.com.

Margaret Morganroth Gullette, Ph.D. The writer is the author of Ending Ageism, or How Not to Shoot Old People:

Since March 2020, I have been writing a book titled American Eldercide, about the tragic and unnecessary deaths in the nursing homes. The “Eldercide” came about because of the abandonment of the 1.4 million residents (as of 2019) living in the 15,400 facilities, a failure of the federal government under Trump but also of state governments that had never taken seriously their part of the responsibility to provide safety, health, and dignity to some of the most vulnerable older adults in the nation. All too many died, and they deserve a monument that signals our regret for the losses. Many survived: in 437 facilities, no one died in 2020. The 150,000+ could have been protected. Others of us in the general population will need to join the survivors or will want similar services that can be provided best in their local communities. No one could doubt in the COVID Era that reforms are needed. . The stories of malfeasance and ageist ableism I discovered and reveal in this book might well have led me to despair of reform. And then I watched in horror as a federal government under a new administration proposed a valuable and targeted package of reforms that then was stymied by people in Congress who also, again, did not care enough. And then I discovered Dignity Alliance MA, dedicated advocates from all walks of life, who collectively know more about conditions and causes and needed improvements than any group in the Commonwealth. They have been tireless and efficient in the two years of the operation. They have wisely and gently guided the legislators on Beacon Hill–some of them also concerned and knowledgeable–toward ameliorating the causes of suffering and improving life for those, most of them in later life, who find themselves in the “care” of bureaucracies. By the time the 100th issue of Dignity Digest is published, the Legislature may or may not have proved itself worthy of this sacred trust.

Jerry Halberstadt, Stop Bullying Coalition:

The Commonwealth fails to adequately fund the services and to oversee and hold caregivers accountable, and no one else is trying to do what DAM is doing. Terrible things happen to vulnerable people and I applaud the efforts of DAM to advocate for remedies.

Colin Killick, Disability Policy Consortium:

Nursing homes as traditionally constituted deprive people of both dignity and safety based on disability and age. They are the largest remaining vestige of the system of institutionalization that used to segregate people with disabilities away from the rest of society and deprive them of agency. DAM’s work represents major progress in moving away from that archaic model.

Judi Fonsh MSW

I had the pleasure of having members of Dignity Alliance support me ( a retired Director of Social Work at  the facility)and several others who were very concerned, in trying to prevent the closure of Farren Care Center. Farren, a non profit nursing home where the specialty care was for those who suffered from a persistent mental illness as well as medical illness and ADL needs or neurological issues and were rejected by at least 5 other nursing homes due to their care needs. The mission of caring was  truly the  focus at Farren. Many Alliance members met weekly and sometimes twice a week as we worked to at least prevent tragedies from occurring during the transfer. The plan that unfortunately came to fruition was that a for profit nursing home company took over the care and in the process many things changed and sadly the transition led to many residents dying. I was so impressed with the knowledge and skills the members of Dignity brought to the work!!

Jim Wessler, Alzheimer’s Association, Massachusetts/New Hampshire Chapter

I wanted to thank you and the Dignity Alliance for your support of the successful budget amendment that provided initial funding for expansion of our Dementia Care Coordination (DCC) program. This will enable us to expand access to this successful program that links family caregivers to immediate support, via their health care providers. You have been an important partner and we do appreciate it.

This is my vision for the future of services, support, and care for older adults and persons with disabilities.

Sandy Alissa Novack, MBA, MSW, LICSW, ACSW, CSW-G

This is part of my vision for the future of services, support and care for older adults and people with disabilities:

In many cases, it will begin when a person needs hospital care for an acute situation. Instead of the too-automatic thought that a person needs to be discharged to a short-term rehabilitation unit or even immediately discharged from the hospital to a long-term care facility, discharge planners will first try to discharge patients back to their house, apartment, or other community-based setting. This includes the chronically homeless or acutely homeless; they may not have a home to return to, but hospitals will learn to work with community agencies to get these folks housed when they are discharged, too, so they don’t unnecessarily get discharged to long-term care.

Because many may need supportive services to be discharged home, I envision a more robust homecare and home health care network in Massachusetts, where many more types of care are funded to provide companionship if needed to settle back into one’s routine at home post-surgery, post-pneumonia, post-anything, and one’s own doctors come to check on you because our new, lifelong, guaranteed health insurance for every citizen in the country sees the value in the home visits, like doctors used to do decades ago, to continue those relationships with providers who know you best.  Respite care will be more generous in coverage, so that family caregivers do not risk losing their own careers, income, and health, trying to take care of their loved one morning, noon and night.

Solo agers will be able to have their chosen family of friends get paid for providing them with needed help, and solo agers will not be left to age all alone nor be socially isolated. Indeed, ample houses will be available for chosen families to even live in a single-family home with the solo ager, to provide the loving family environment that allows the best in everyone to shine, and so most people with disabilities will not need to move, all alone, into a facility.

Houses for the future, for anyone, will come with ramps into the house if it is an older building, or new construction regulations will require flat entrances, so no one need move out of a house into a facility due to decrease in mobility or other health issues. Older houses and apartment buildings will be required to add in elevators if they don’t already have elevators that allow residents with the larger and heavier assistive devices to get in and out of them with ease. Bathrooms and kitchens will be universally designed as well, throughout the state and at all price points, to account for the fact that we all need support at some points in our lives, whether we break a leg on a ski slope and have a temporary disability, or we have a permanent disability but want to keep cooking our favorite dishes or just enter to smell the food others are cooking in the kitchen.

Those citizens who, due to lung, or other health care issues, would do well to live by the ocean/waterways to be away from pollution, allergens, smoke and the like, will be given first priority for housing near the ocean/waterways, housing that will cost the same for them near the ocean as it would any place else in the state.

No smoking, including tobacco, cigarettes, pipes, vaping, or otherwise will be allowed in housing arrangements of any kind, or within two miles of any housing or facilities, to protect the health of everyone, child, or adult, including the smoker, but especially children, elders, and people with disabilities.

There will be no haggling with insurance that your wheelchair needs repair or replacement. If your doctor orders you need a repair or replacement, insurance must pay for what you need. Same thing for walkers, scooters, and other medical supplies. Similarly, if you need a medicine, you will be able to have the medicine ordered by your doctor, and the pharmacy gets re-imbursed by a state-level pharmacy bureau–no more studying each and every year which Part D Medicare prescription program you should sign up for.

Because one’s hearing, eyesight, and teeth are essential to one’s health, my envisioned guaranteed lifelong health care coverage for every citizen will cover these too long neglected aspects of our health.

Long-term care insurance will no longer be only for those who can pay the hefty yearly premiums. Long-term care coverage will be part of your guaranteed pre-pregnancy to grave health coverage, for every human being to be treated equitably and with dignity, at every stage of life, and with no family going into financial debt due to medical debt. Long-term care insurance will be used in the community as well as in long-term care facilities if you cannot remain living in the community.

Starting someday soon, personal care assistants and certified nursing assistants should be paid double the yearly salary they make now, so they will not have to hold down multiple jobs to feed, house, and otherwise support themselves and family. They will get full benefits, such as sick days and vacation time. The money that will fund these essential workers (as they were certainly shown to be essential during the pandemic) is based on the reality that caregivers who make a difference for the lives they care for should get paid for that life-giving, quality of life they make possible, and could come from a similar reality check in the sports, casino, and liquor arenas, where, for example, people who do not contribute essential services as defined in the pandemic and do not contribute to anyone’s life other than recreationally, have gotten paid more than essential workers.  I think the pandemic has shown us where essential workers are and they are not in baseball games. We should use our experience during the pandemic to re-calibrate the salaries of all kinds of jobs, making sure that those who lead the way in the care of loved ones get paid well and what they are worth, which should be way more than what someone, admittedly an athlete, but still someone who does not perform essential services, earns.

At the end of life, no birth family nor chosen family needs to be shamed that they have no funds to bury a loved one. For the dignity of everyone, there will be no more paupers’ graves, unless perhaps due to war or other disasters the identity of bodies is not possible. Otherwise, as part of the pre-pregnancy to grave health care coverage and prioritizing human dignity, everyone is entitled to a basic funeral service, a basic casket fitting your religious or secular beliefs, and a marker or gravestone. As the news kept showing us at the beginning of the pandemic, morgues were overflowing with the deceased, and many countries were digging mass graves. From such moments, our sense of what is dignity only grows, and we must keep honoring our loved ones and giving them the dignity they deserve, every chance we can at every stage of life, and that includes the end of life.

Jerry Halberstadt, Stop Bullying Coalition:

We will enable everyone to live in peace, security, and safety and to their full potential.

I would like to add:

Jerry Halberstadt, Stop Bullying Coalition:

I have great respect for all who participate in the work of DAM. While the current mission of DAM is focused on institutional settings and moving people into the community and/or keeping them in the community, many of the same issues apply to elderly and disabled persons living in public and subsidized housing, and even to market rate and condominium apartments. There are huge gaps in our legal and administrative systems so that oversight and access to justice are not available. So, either DAM expands our scope, or a new organization needs to be created. Getting relief through legislation is not easy, we have tried for a decade.

Issue #99 – July 25, 2022

Spotlight (Digest 99)

The Shape of Care – a Podcast about Caregiving

The shape of Care - A Podcast abut Caregiving.  Line drawing of two woman with extended arms towards each other

The Shape of Care is a podcast series about caregiving created and hosted by Boston-based sociologist Mindy Fried, MSW, PhD.
The second series, consisting of four episodes, has just been released.

  • Episode 1: “From fear to love: An evangelical Christian and a Muslim home care worker”
  • Episode 2: “Making a difference: From care work to home care activism”
  • Episode 3: “Nursing assistants: the heart and soul of nursing care”
  • Episode 4: “She called me her three c’s: compassion, caring and comfort”

The Shape of Care podcast aims to link personal stories to broader sociological and policy issues including:

  • The nature of relationships between care workers and the people they care for, whether in a  home or in an institution;
  • The quality of care – or lack thereof – in nursing homes;
  • Current financing of our long-term care system (via Medicaid);
  • The low wage, gendered and racialized care workforce;
  • The lack of comprehensive long term care policies in the U.S.; and
  • The type of care we want for our loved ones as they decline.

Access the series via the Apple Shape of Care link or www.theshapeofcare.org.
Also see the discussion guide for The Shape of Care podcast.
“The Shape of Care” illuminates the costs, financial and otherwise, of hiring (caregivers), the toll on the caregivers, and the need for a rethinking of a widening hole in the infrastructure of American health care. – Phoebe Lett, The New York Times.

An Act relative to supported decision-making agreements for certain adults with disabilities (S.2848, H.4725)

Take Action:
Dignity Alliance Massachusetts has endorsed An Act relative to supported decision-making agreements for certain adults with disabilities (S.2848, H.4725)
Momentum has been building around this proposed legislation. There are many disability advocacy and legal services organizations promoting this bill. There is a real opportunity to get passage before the end of the session on July 31.

What needs to be done:
Contact your state senator and state representative. Ask them to contact the respective Chairs of the Senate or House Ways and Means Committee and ask that the Supported Decision-Making Bill (S.2848/H.4725) movedfor action.
The link to find legislators and their contact information: https://malegislature.gov/search/findmylegislator
Even if you have previously made contact regarding this bill, reinforce it with another call or email.
There are hundreds of bills waiting for further action before the end of this session. Only a handful will be enacted. Please help make Supported Decision Making one of them.

Issue #98 – July 18, 2022

Spotlight (Digest 98)

Tax relief and economic development bill

The Senate is expected to release its tax relief and economic development bill on Monday July 18 for quick action this week. Sen. Comerford, lead sponsor with Rep Barber of a bill to reform MassHealth estate recovery, is expected to introduce an amendment to limit MassHealth estate recovery –the estate tax on the poor. More information to follow as it becomes available.

Issue #97 – July 11, 2022

Spotlight (Digest 97)

Take Action!

Dignity Alliance Massachusetts has endorsed An Act relative to supported decision-making agreements for certain adults with disabilities (S.2848, H.4725)

Help pass S.2848 / H.4725 into law! Contact Senate President Karen Spilka [(617) 722-1500 /  Karen.Spilka@masenate.gov]  and House Speaker Ronald Mariano [(617) 722-2500 / Ronald.Mariano@mahouse.gov]. Urge them to enact the legislation this session.

Read more about the Supported Decision-Making Bills, and how you can help.

Issue #96 – Week of July 1, 2022

Spotlight (Digest 96)

Take Action!

Dignity Alliance Massachusetts has endorsed An Act expanding wheelchair warranty protections for consumers with disabilities (S.2567).
Help pass S.2567 into law! Read more about the S.2567, and how you can help.
A proposed state law would make it easier to get a broken wheelchair fixed.

Issue #95 – Week of June 24, 2022

Issue #94 – Week of June 17, 2022

Issue #93 – Week of June 10, 2022


(Report) Racism as a Public Health Crisis – Perspectives on Healthy Aging

The Network for Public Health Law, April 2022


The social determinants of health are the social, economic, and environmental conditions that impact the health outcomes of individuals at all stages of life. These systems include conditions like access to nutritious food, economic stability, safe neighborhoods, stable housing, social connection, and transportation. Inequitable access to these conditions can lead to disparities in health and higher rates of morbidity and mortality. These inequities — and the systems and structures that maintain them — affect lifelong health outcomes and influence how people age.

This report uses a revised Social Determinants of Health (SDOH) framework put forward by Ruqaiijah Yearby to examine the role of law as a tool to address structural discrimination, with a focus on health impacts across the lifespan. This framework illustrates how law and the systems it interacts with can shape health and well-being and identifies structural discrimination as the root cause of disparities in health outcomes.


This analysis illustrates a current opportunity to recognize the effects of racism throughout a person’s life and across generations and embed healthy aging in efforts to promote racial equity. Declarations of racism as a public health crisis, along with recommendations from health equity task forces and equity-focused legislation, can be tools to address the social determinants of health, improve health outcomes, and reduce the longevity gap. Multi-sector partners can, and should, join together to establish common priorities and create a collective infrastructure to identify and implement policy recommendations that will advance health and racial equity across the lifespan. Any process should identify specific community engagement strategies to support age-friendly communities and policies that uplift community voices and expertise.

The success of efforts to create an age-friendly public health system depends on renewed investment in public health infrastructure.32 However, it also depends on innovative investment in communities and strategic use of budgets as a policy tool. Countless partners from across sectors, communities, and identities have been involved in crafting, issuing, approving, and implementing declarations, health equity task force recommendations, and legislative requirements. Major funding commitments have been made by hospitals, health systems, insurers, professional associations, and corporate partners to advance racial equity. Collective action and strong cross-sector partnerships to leverage funding in pursuit of common objectives can mean greater impact on the health and well-being of people throughout their lives and across generations. Ultimately, health equity across the lifespan must be the framework and not just a goal.

(Report) National Healthcare at Home Best Practices and Future Insights Study

Berry Dunn, May 11, 2022

With over 1,000 agency site participants, the National Healthcare at Home Best Practices and Future Insights Study’s goal is to provide agency leaders with clinical, financial, and operational best practices performed by leading organizations across the country.

The report covers:

  • Operational, clinical, and financial processes
  • Staffing, recruitment, and retention
  • Technology
  • Palliative care

Issue #92 – Week of June 3, 2022


Annual Report – Massachusetts Advisory Council on Alzheimer’s Disease and All Other Dementias

April 2022
This report is the Council’s second annual report. The Commonwealth has 130,000 residents diagnosed with dementia3, supported by over 340,000 family caregivers and an estimated 130,000 or more residents currently living with dementia without a formal diagnosis. The state plan includes
recommendations and implementation plans around seven focus areas or “workstreams”:

  1. Caregiver Support and Public Awareness
  2. Diagnosis and Services Navigation
  3. Equitable Access and Care
  4. Physical Infrastructure
  5. Public Health Infrastructure
  6. Quality of Care
  7. Research

AARP Member Opinion Survey in Massachusetts: Life Experiences & Concerns

AARP Research
Topics covered:

  • Financial
  • Health
  • Work / Retirement
  • Housing & Independent Living
  • Social Connectiveness
  • Demographics

Issue #91 – Week of May 27, 2022


(Report) Broken Promises: An Assessment of Nursing Home Oversight

Long Term Care Community Coalition

This report,“Broken Promises: An Assessment of Nursing Home Oversight,” presents the results of an analysis of survey and enforcement data at the state, regional, and federal levels with a focus on all U.S. states and the 10 Regional Offices of the federal Centers for Medicare and Medicaid Services (CMS) tasked with overseeing the performance of the state enforcement agencies in their respective regions of the country.

Download the full report on Broken Promises

Click here for interactive maps and tables.

Issue #90 – Week of May 20, 2022

Issue #89 – Week of May 13, 2022

Issue #88 – Week of May 6, 2022


Report on the Holyoke Soldiers’ Home, May 2016 to February 2020

Office of the Inspector General for Massachusetts, April 29, 2022

The Office’s report on its investigation, Holyoke Soldiers’ Home, May 2016 to February 2020, details the Office’s findings and outlines a comprehensive blueprint for lasting improvements. As more fully described in its report, the Office found:

  • The governor, secretary of the Executive Office of Health and Human Services (EHS) and the Home’s Board of Trustees (Board) did not follow the statute that gives the Board the power to appoint the superintendent. Rather, the Board recommended three candidates, the EHS secretary met only with Mr. Walsh and the governor appointed him as the Home’s superintendent.
  • Superintendent Walsh did not have and did not develop the leadership capacity or temperament for the role of superintendent. He created an unprofessional and negative work environment, retaliated against employees he deemed disloyal, demonstrated a lack of engagement in the Home’s operations and circumvented his chain of command.
  • EHS and Department of Veterans’ Services (DVS) officials failed to adequately address serious complaints by senior managers and others at the Home. Administration officials, primarily at EHS, failed to recognize that the recurring complaints indicated that Superintendent Walsh did not have the leadership skills or temperament to lead the Home.
  • EHS undertook two investigations of Superintendent Walsh’s actions during his four-year tenure, but those investigations were flawed, unnecessarily restricted in scope and biased in Superintendent Walsh’s favor.

In the report, the Office makes recommendations to fix longstanding structural problems, address fundamental flaws related to oversight, and strengthen management and accountability. The legislative recommendations include:

  • DVS, which is currently within EHS, should be elevated to a cabinet-level secretariat. One person must be responsible for the oversight and management of the superintendent; one person must have the authority and responsibility to appoint, supervise, discipline, and remove the superintendent. The DVS Secretary should have this authority and responsibility for the superintendents at the Soldiers’ Homes in Holyoke and Chelsea (together the Soldiers’ Homes).
  • Superintendents of the Soldiers’ Homes must meet certain requirements, including being licensed nursing home administrators with extensive management experience.
  • The Department of Public Health (DPH) should have the authority and funding to provide independent clinical oversight and support for the Soldiers’ Homes.
  • DVS should establish an ombudsperson and a hotline to allow confidential reporting by residents, relatives, staff and concerned citizens.

For a copy of the full report, see: Holyoke Soldiers’ Home, May 2016 to February 2020

Issue #87 – Week of April 29, 2022

Download the Dignity Digest 87:

Featured Reports

Equity and Aging in the Community

AP Polls, April 27, 2022

Older adults by and large feel prepared to age in their current communities and are confident in the availability of and access to services in their community that will support their ability to age at home. But while still holding a generally positive outlook, some segments of this population—especially those with lower incomes, those living in rural areas, and Black or Hispanic older adults—have more reservations about the services in their area that support aging.

A new study of adults age 50 and older from the AP-NORC Center for Public Affairs Research and The SCAN Foundation finds that a majority of these adults feel prepared to stay in their homes and communities as long as possible, and they feel ready to reach out for help from a loved one or health care provider as they need it. Two-thirds think their area meets their needs for services like health care, grocery stores, and social opportunities. Few report having a hard time accessing needed services because of communication obstacles like a language barrier (11%), cultural barrier (8%) or age gap (8%); issues with affordability (15%); or issues of respect for their religious (4%) or cultural (3%) background. Health care services of all types are widely perceived as easy to access in their local area, and most feel health care providers in their area understand their needs (79%) and take their concerns seriously (79%).

AP Polls on Long Term Care

Visualizing Health and Equity

Sixty-two percent of adults age 50 and older have used telehealth since the beginning of the pandemic, but socioeconomic differences emerge in the reasons for using—and not using—it.

Visualizing Coronavirus Worries and Social Isolation among Older Adults

With COVID-19 case counts remaining high in much of the United States, 34% of adults age 50 and older feel socially isolated. And 1 in 4 feels that their social life and relationships have gotten worse over the past year.

Long-Term Care in America: How Well Can Communities Support Aging at Home?

More people think their local area is doing a good job than a poor job meeting the needs of older adults, but people of color and lower-income households are more concerned that their community isn’t equipped to provide the services needed for people to age at home.

Long-Term Care in America: Americans Want to Age at Home

Americans want to age in a home setting and support a range of policies to help them do so.

Growing Older in America: Aging and Family Caregiving during COVID-19

People providing care to an aging family member or friend have been acutely impacted by the COVID-19 outbreak, yet the pandemic has not led to any heightened awareness when it comes to preparations for growing older or caregiving.

Long-Term Caregiving: The True Costs of Caring for Aging Adults

The AP-NORC Center’s 2018 survey of long-term caregivers asks Americans about the types of challenges and costs they face providing care.

Issue #86 – Week of April 22, 2022

Download the Dignity Digest 86:


(Report) How Discrimination in Health Care Affects Older Americans, and What Health Systems and Providers Can D

The Commonwealth Fund
April 21, 2022
In this damning new report, 1 in 4 older Americans of color say health care providers treated them unfairly because of their race or ethnicity, a far higher proportion than people in 10 other high-income countries. Discrimination can include dismissing a patient’s symptoms or concerns, offering different treatment depending on insurance type, or not providing care in a patient’s preferred language. The Commonwealth Fund survey of adults over 60 found that among Americans who experienced discrimination, more than a quarter said their care suffered because of it. Almost half of this group said they were in fair or poor health, twice the level of those who did not report discrimination. Three-quarters have three or more chronic conditions and they are far more likely to feel socially isolated, have a mental health diagnosis, or face economic problems.


  • Older adults in the United States are more likely to report racial and ethnic discrimination in the health system exists, compared with their peers in 10 other high-income countries.
  • In the U.S., one in four Black and Latinx/Hispanic adults age 60 and older reported that they have been treated unfairly or have felt that their health concerns were not taken seriously by health professionals because of their racial or ethnic background.
  • More than a quarter of U.S. older adults said they did not get the care or treatment they felt they needed because of discrimination.
  • U.S. older adults who have experienced discrimination in a health care setting were more likely to have worse health status, face economic hardships, and be more dissatisfied with their care than those who did not experience discrimination.

Policy Recommendations

  • Promote transparency and accountability by identifying instances of discrimination and publicly reporting discrimination data.
  • Develop medical school curricula to educate students about how the U.S. health care system has harmed patients of color and other historically marginalized communities.
  • Examine how current policies enable discrimination and then remove or reform those policies.
  • Address the lack of diversity in the U.S. health care workforce.
  • Provide culturally and contextually appropriate care that addresses patients’ communication needs and preferences.

Issue #85 – Week of April 15, 2022

Download the Dignity Digest 85:


Inequities in COVID-19 vaccine and booster coverage across Massachusetts ZIP codes: large gaps persist after the 2021/22 Omicron wave

medRxiv,  April 7, 2022

Inequities in COVID-19 vaccine coverage may contribute to future disparities in morbidity and mortality between Massachusetts (MA) communities.

Methods. We obtained public-use data on residents vaccinated and boosted by ZIP code (and by age group: 5-19, 20-39, 40-64, 65+) from MA Department of Public Health. We constructed population denominators for postal ZIP codes by aggregating Census-tract population estimates from the 2015-2019 American Community Survey. We excluded non-residential ZIP codes and the smallest ZIP codes containing 1% of the state’s population. We mapped variation in ZIP-code level primary series vaccine and booster coverage and used regression models to evaluate the association of these measures with ZIP-code-level socioeconomic and demographic characteristics. Because age is strongly associated with COVID-19 severity and vaccine access/uptake, we assessed whether observed socioeconomic and racial inequities persisted after adjusting for age composition and plotted age-specific vaccine and booster coverage by deciles of ZIP-code characteristics.

Results. We analyzed data on 418 ZIP codes. We observed wide geographic variation in primary series vaccination and booster rates, with marked inequities by ZIP-code-level education, median household income, essential worker share, and racial-ethnic composition. In age-stratified analyses, primary series vaccine coverage was very high among the elderly. However, we found large inequities in vaccination rates among younger adults and children, and very large inequities in booster rates for all age groups. In multivariable regression models, each 10 percentage point increase in “percent college educated” was associated with a 5.0 percentage point increase in primary series vaccine coverage and a 4.9 percentage point increase in booster coverage. Although ZIP codes with higher “percent Black/Latino/Indigenous” and higher “percent essential workers” had lower vaccine coverage, these associations became strongly positive after adjusting for age and education, consistent with high demand for vaccines among Black/Latino/Indigenous and essential worker populations.

Conclusion. One year into MA’s vaccine rollout, large disparities in COVID-19 primary series vaccine and booster coverage persist across MA ZIP codes.

Issue #84 – Week of April 8, 2022

Download the Dignity Digest 84:


National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff

A major, comprehensive report on nursing home care was released on April 6, 2022, by the Committee on the Quality of Care in Nursing Homes under the jurisdiction of the National Academies of Sciences (NASEM), Engineering, and Medicine, The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff.

With support from a coalition of sponsors, NASEM formed the Committee on the Quality of Care in Nursing Homes to examine how the United States delivers, finances, regulates, and measures the quality of nursing home care. The resulting report, National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff, identifies seven broad goals (below) and supporting recommendations which provide the overarching framework for a comprehensive approach to improving the quality of care in nursing homes. The new Committee on the Quality of Care in Nursing Homes examined how our nation delivers, regulates, finances and measures quality of nursing home care, including the long-standing challenges brought to light by the COVID-19 pandemic.

Webinar Information
Highlights and Recommendations:
The Quality of Care in Nursing Homes. In this link, scroll down to Publications.  You’ll see to the right, links to Highlights and Recommendations

National Imperative Webinar Presentation

National Imperative Presentation slides

Overarching Conclusions

  1. The way in which the United States finances, delivers, and regulates care in nursing home settings is ineffective, inefficient, fragmented, and unsustainable.
  2. Immediate action to initiate fundamental change is necessary.
  3. Stakeholders need to make clear a shared commitment to the care of nursing home residents.
  4. Ensure that quality improvement initiatives are implemented using strategies that do not exacerbate disparities in resource allocation, quality of care, or resident outcomes.
  5. High-quality research is needed to advance the quality of care in nursing homes.
  6. The nursing home sector has suffered for many decades from both under-investment in ensuring the quality of care and a lack of accountability for how resources are allocated.
  7. All relevant federal agencies need to be granted the authority and resources from the U.S. Congress to implement the recommendations of this report.


  • Goal one: Deliver comprehensive, person-centered, equitable care that ensures the health, quality of life, and safety of nursing home residents; Promotes resident autonomy; And manages risks
  • Goal two: Ensure a well-prepared, empowered, and approximately compensated workforce
  • Goal three: Increase transparency and accountability of finances, operations and ownership
  • Goal four: Create a more rational and robust financing system
  • Goal five: Design a more effective and responsive system of quality assurance.
  • Goal six: Expand and enhance quality measurement and continuous quality improvement
  • Goal seven: Adopt health information technology in all nursing homes

U.S. nursing home care is ineffective, inefficient, inequitable, fragmented, and unsustainable

April 6, 2022
About 1.3 million Americans live in the country’s 15,000 nursing homes, where they are cared for by roughly 3 million staff members. As we write this, nearly 170,000 nursing home residents are estimated to have died from Covid-19. Many, many more were isolated from family and friends during the 20-month lockdown. Bed sores, severe weight loss, depression, and mental and functional decline have spiked among nursing home residents. And nurses, certified nurse aides, and others who work in these facilities, putting their own lives at risk, have worked in the most challenging of conditions without adequate pay or support. . .
President Biden recommended several reforms for nursing homes during his State of the Union address. These included minimum staffing standards, increased oversight, and better financial transparency. Although these provide a start, much more comprehensive and system-level action is necessary to transform this care in the United States. . .
Over the past 18 months, we served on a 17-member committee assembled by the National Academies of Sciences, Engineering, and Medicine that was charged with making bold, actionable recommendations to improve nursing home care.
The committee’s report, which was released Wednesday, concluded that the way the U.S. finances, delivers, and regulates care in nursing home settings is ineffective, inefficient, inequitable, fragmented, and unsustainable.

U.S. nursing home system ‘ineffective,’ ‘unsustainable,’ National Academies report says

McKnight’s Long-Term Care News
April 6, 2022
A long-awaited national report has found that the way the United States finances, delivers and regulates nursing home care is ineffective and unstable. Immediate action is needed to bring meaningful changes to the system to better meet the needs of residents and staff, the vast team of researchers added. . .
What’s promising about the report is how comprehensive and detailed it is in laying out the actions needed and by whom, said Terry Fulmer, Ph.D., president of the John A. Hartford Foundation, one of the study’s sponsors. 
Fulmer said legislators on both sides of the aisle, regulators, state policymakers and nursing home operators should all back this report and its actionable recommendations. 
“The recommendations are an interrelated and complete set that gives us the blueprint for transformative change that is desperately needed for our nursing home staff and residents.

The Impact of COVID-19 on People with Disabilities

National Council on Disability (NCD)
October 29, 2021
Key Findings

  • Residents of congregate care facilities such as nursing homes, assisted living homes, psychiatric facilities, and board and care homes, where bedrooms, direct care workers, and amenities are shared, and infection control is highly challenging, caught the virus a died in large numbers, largely due to lack of personal protective equipment (PPE), close contact with others in confined settings, and the higher susceptibility to the virus due to other health conditions. The institutional model was once again shown to be detrimental to vulnerable individuals.
  • People with disabilities of varying ages relied on direct care workers to aid with daily activities needed to remain functional in their communities, and neither they nor their workers could fully shelter in place or obtain needed personal protective equipment (PPE).
  • The growing shortage of direct care workers that existed prior to the pandemic got worse during the pandemic, Many such workers, who are women of color earning less than a living wage and lacking health benefits, left their positions for fear of catching or spreading the virus, leaving people with disabilities and their caregivers without aid, and placing people with disabilities at risk of losing their independence or being institutionalized.
  • Researchers have increasingly documented how physicians and other healthcare providers hold implicit biases concerning disability that lead to a primary focus on the functional limitations of people with significant disabilities and an assumption that they have a low quality of life as a result. Those assumptions have guided treatment decisions, with deadly consequences. People with intellectual and developmental disabilities, and those who were medically fragile and technology dependent, disabilities faced a uniquely high and explicit risk of being triaged out of COVID-19 treatment when hospital beds, supplies, and personnel were scarce, denied the use of their personal ventilator devices after admission to a hospital, and at times, denied the assistance of critical support persons during hospital stays. Informal and formal Crisis Standards of Care (CSC), documents that guided the provision of scare healthcare in surge situations, targeted people with certain disabilities for denial of care.
  • People with disabilities and chronic conditions who were at particularly high risk of infection with, or severe consequences rom, COVID-19 were not recognized as a priority population by many states when vaccines were given emergency use authorization and had to advocate from a position of weakness because of a longstanding failure to collect detailed functional disability data in healthcare. Physical, online, communication, and procedural barriers remained common in multiple key activities that were commonly needed during the pandemic, such as the administration of testing for COVID-19 and,later on, vaccination.
  • Students with disabilities did not receive needed in-person special education services and supports that made learning possible and were given last or no priority when districts attempted to preserve educational opportunity. Some students with special education needs, who were under the jurisdiction of the Bureau of Indian Education, experienced an especially challenging combination of internet barriers on Indian and rural lands.
  • People with disabilities have historically been underrepresented in the workforce even in robust economic times and the pandemic exacerbated this long-standing problem.
  • Employed people with disabilities and the family members of people with disabilities encountered the difficult choice between the income needed from work and the social distance and isolation needed to keep people with high-risk disabilities safe from the coronavirus, especially in the face of gaps in disability employment protections such as the absence of the ability to seek leave as a care provider for a family member with disabilities.
  • Deaf, Hard of Hearing, Deaf-Blind, and Blind persons experienced a profound communication gulf as masks became commonplace, making lipreading impossible and sign language harder, while the virus made touch dangerous for blind persons and people with visual impairments who typically experience the world through touch.
  • The financial, social, and familial adjustments that had to be made over the course of the pandemic, in addition to the constant threat of contracting COVID-19 itself, had a negative impact on everyone’s mental health, and mental health symptoms were experienced by some who acquired the virus. But both youth and adults who had mental health disabilities that predated the beginning of the pandemic experienced measurable deterioration over its course, made worse by a preexisting shortage of community treatment options, effective peer support, and suicide prevention support.

Issue #83 – Week of April 1, 2022

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(Essay) Unexpectedly united: The parallel plights of two communities 2,000 miles apart wracked by the pandemic

March 28, 2022

By Tom Sequist who is the chief medical officer of Massachusetts General Brigham in Boston; medical director of the Outreach Program with the Indian Health Service and a physician at the Phyllis Jen Center for Primary Care, both at Brigham and Women’s Hospital; and a professor of medicine and health care policy at Harvard Medical School.

I constantly straddle two disparate worlds. One is in Boston, where I work for one of the country’s best health care systems and serve as a professor at Harvard Medical School. The other is in northern New Mexico, where I am a member of the Taos Pueblo tribe.

While these two communities could not be more different in population, culture, or geography, the Covid-19 pandemic has linked them in an unfortunate but all-too-common way: both are beset by racism and racial disparities in health care.

The Boston area was an early hotbed of the pandemic in the United States. In March 2020, Chelsea, Mass., a predominantly Latinx city that borders Boston to the north, had one of the highest Covid-19 rates in the country, with 2,475 cases reported among its 40,000 residents. These soaring rates soon hit surrounding areas, also with largely Black and Latinx populations.

For all its health care prowess, Boston — like the rest of the world — was not prepared for a pandemic. Clinical protocols and policies took time to put in place, guidelines were constantly shifting as public health officials and clinicians continued to learn on the fly about this new disease, and the global supply chain was in shambles, limiting access to personal protective equipment and Covid-19 testing supplies. A dearth of Spanish-speaking staff also limited hospitals’ ability to provide care for the huge volume of patients from Latinx communities. . .

As hospitals became overcrowded, equity meant reevaluating the algorithms used to determine who was allocated a bed or a ventilator. As we set up testing sites, a focus on equity drove us to open locations not just where our organization had an existing physical footprint in a neighborhood but where case rates were highest and transportation was limited. When vaccines became available, equity necessitated that we look beyond online appointment scheduling and directly call individuals to make sure that a lack of internet access or digital literacy didn’t lead to their not getting this lifesaving therapy. When we communicated anything related to the Covid-19 pandemic to patients and community members, equity required us to put out communications in multiple languages and using channels beyond email — including messaging via community vans, text messaging, social media, and other outlets. . .

The pain and suffering of Covid-19 and the events in the first half of 2020 that sparked social justice protests across the nation have opened the door to drive tremendous change in health care equity. The U.S. is at a historic moment of racial reckoning. Racism and inequities and their impacts are being laid bare and nearly every industry — including health care — has recognized its role in changing the country’s trajectory. . .

Movements like this traditionally take years to be brought to life. But the pandemic has shown that much-needed change can come swiftly when people and organizations collectively channel their energy into addressing society’s challenges.

(Report) The State of Black America and Covid-19 – A Two Year Assessment

Black Coalition Against COVID

This report is a call to action to address the continued COVID-19 burden and highlight the need for continued vigilance to ensure equity for Black Americans. Our reflection over the course of the COVID-19 pandemic revealed a myriad of challenges and disparities across several indicators of well-being. This was unsurprising since Black Americans experienced disproportionate disease burden prior to the pandemic, a result of longstanding social and structural inequities. The trajectory of the COVID-19 burden among Black Americans showed overall declines; however, Black Americans continued to experience disparate burden from infection, hospitalization, death, and incidence of long-COVID compared to other racial and ethnic groups. Other pandemic related effects such as food and economic insecurity, loss of life, educational achievement gaps, behavioral health disorders, and increased need for mental health care services disproportionately affected Black Americans.

Policy and practice interventions have emerged over the course of the pandemic to alleviate suffering experienced by Black and other communities of color. This report highlights ten focus areas and twelve action steps to support equitable COVID-19 care and sustain recovery efforts for Black communities.

The work ahead will be more challenging than ever and requires well designed, adequately funded, and strategically coordinated efforts at the national, regional, state, and local levels. The time is now to recognize health equity is the work of everyone and for each one of us to do our part on the journey.

Issue #82 – Week of March 25, 2022

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Issue #81 – Week of March 18, 2022

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(Report) Women Want Good Pay, Health Coverage, and Better Benefits as They Re-Enter Workforce

Institute for Women’s Policy Research, March 2022

A new national survey by IWPR finds solid pay, health insurance, job security, retirement benefits, and paid leave top the list of considerations for women as they re-enter the workforce following the pandemic.


  • Good pay and health insurance are the top two desired benefits for women re-entering the workforce. When considering future jobs, a majority of women report a living wage (87.8 percent) and health insurance (86.0 percent) to be “very important” or “important” benefits, followed by retirement benefits (84.7
  • percent) and job security (80.7 percent). Paid vacation (79.4 percent), paid sick time (77.3 percent), and paid family leave (76.6 percent) are also “very important” or “important” considerations.
  • Women also want flexibility as they consider future jobs. Over six in ten women (61.4 percent) surveyed consider control of their schedules to be “very important” or “important.”
  • Despite more than a year of the pandemic, paid sick and family leave remains an elusive benefit for many working women. Over one-third of women (37.5 percent) employed full-time report they do not have paid sick leave—and 65.2 percent of full-time workers surveyed report they do not have paid family leave.
  • Close to 70 percent of women report they do not have job security. Of women surveyed, just 31.6 percent felt that their current job offered security.

(Podcast) Successful Aging Support: Reimagining Effective and Affordable Long-Term Care Solutions

The Pioneer Institute, March 8, 2022

Hubwonk host Joe Selvaggi talks with Brookings Institution Senior Fellow and healthcare policy expert Stuart Butler about the challenge of building long-term care systems and institutions that will support Americans as they age, without depleting assets and bankrupting the social safety net.

Issue #80 – Week of March 11, 2022

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The Justice Gap

Legal Services Corporation (LSC)
The phrase “with liberty and justice for all” in the U.S. Pledge of Allegiance represents the idea that everyone should have access to justice, not just those who can afford legal representation. In criminal cases, legal assistance is a right. Americans accused of a crime are appointed legal counsel if they cannot afford it. As a general matter, however, there is no right to counsel in civil matters. As a result, many low-income Americans “go it alone” without legal representation in disputes where they risk losing their job, their livelihood, their home, or their children, or seek a restraining order against an abuser.
This “justice gap” – the difference between the civil legal needs of low-income Americans and the resources available to meet those needs – has stretched into a gulf.1 State courts across the country are overwhelmed with unrepresented litigants. In 2015, for example, an estimated 1.8 million people appeared in the New York State courts without a lawyer.2 And we know that 98% of tenants in eviction cases and 95% of parents in child support cases were unrepresented in these courts in 2013.3 Comparable numbers can be found in courts across the United States.
This study explores the extent of the justice gap in 2017, describing the volume of civil legal needs faced by low-income Americans, assessing the extent to which they seek and receive help, and measuring the size of the gap between their civil legal needs and the resources available to address these needs.

The burden of medical debt in the United States

Kaiser Family Foundation, March 10, 2022

  • 1 in 10 Adults Owe Medical Debt, With Millions Owing More Than $10,000.
  • Black Adults, Those in Poor Health, and People Living with Disabilities are Most Likely to Carry Significant Medical Debt.
  • Americans Likely Owe Hundreds of Billions of Dollars in Total Medical Debt.
  • A new KFF analysis of government data estimates that nearly 1 in 10 adults (9%) – or roughly 23 million people – owe medical debt. This includes 11 million who owe more than $2,000 and 3 million people who owe more than $10,000.
  • The analysis is based on data from the 2020 Survey of Income and Program Participation, a nationally representative survey that asks every adult in a household whether they owed money for medical bills in 2019 and how much they owe. It looks at people with medical debt of more than $250.
  • The 2020 survey suggests Americans’ collective medical debt totaled at least $195 billion in 2019, though with quite a bit of uncertainty. A small share of adults account for a huge share of the total, with considerable variation from year to year. The estimate is significantly higher than other commonly cited estimates, which generally rely on data from credit reports that may not capture medical debts charged to credit cards or included in other debts rather than being directly owed to a provider.
  • Other findings include:
    • People ages 35-49 (11%) and 50-64 (12%) are more likely than other adults to report medical debt. They have greater health needs than younger people on average and aren’t yet old enough to qualify for Medicare coverage, which may protect them from high costs.
    • Larger shares of people in poor health (21%) and living with a disability (15%) report medical debt. People in these groups are more likely to need and receive care than people in better health and without disabilities.
    • Among racial and ethnic groups, a larger share of Black adults (16%) report having medical debt compared to White (9%), Hispanic (9%), and Asian American (4%) adults.
    • Adults who were uninsured for more than half of the year are more likely to report medical debt (13%) than those who were insured for all or most of the year (9%).
    • It’s not yet clear how the pandemic and resulting recession affected medical debt. Many people lost jobs and income early in the pandemic, which could have led to more difficulty affording medical care. At the same time, many people delayed or went without care, so fewer people may have been exposed to costly medical care. Shifts in insurance coverage and COVID-related cost-sharing waivers could also affect what people had to pay out-of-pocket.

Many households do not have enough money to pay cost-sharing in typical private health plans

Peterson-Kaiser Family Foundation, March 10, 2022

Health plans use cost-sharing (deductibles, copayments, and coinsurance) as incentives for enrollees to use services efficiently and to shop for lower cost options when they do need care. Cost-sharing that is too high, however, can discourage enrollees from getting the care that they need or drive them into financial distress and even bankruptcy. Enrollees in private health insurance plans may have to pay thousands of dollars to meet plan deductibles, coinsurance, and copayments. Cost-sharing in private health insurance plans has steadily increased over time. For employer-based coverage in 2021, the average deductibles for single coverage were $2,379 for covered workers at small firms and $1,397 for covered workers in larger firms. Similarly, deductibles in non-group Marketplace plans can be much higher for enrollees not eligible for cost-sharing reductions.

By shifting a portion of health cost onto people using services, health plan cost-sharing reduces the expense paid by the insurer, thereby potentially lowering the premium. More importantly, requiring consumers to contribute encourages them to carefully consider which services they will use, and, depending on how the cost-sharing is structured, may encourage the use of lower-cost care. While cost-sharing may reduce premiums, evidence suggests it also might discourage people from seeking needed and beneficial care.
As cost-sharing levels have increased, so has concern about cost-related access barriers among people with private coverage. While low-income people enrolled in Medicaid or the Marketplaces face little or no cost-sharing, employer plans generally do not vary cost-sharing based on income. In 2020, just 7% of firms with 50 or more workers had programs to help lower-wage workers meet cost-sharing obligations.
Much of the discussion around affordability of private coverage has centered on premium costs. A broader notion of affordability would focus on the ability of families, particularly low- and middle-income families, to meet potentially high out-of-pocket expenses associated with a chronic or acute illness. In addition to high cost sharing deterring needed health care, it can also create financial instability. In the U.S., nearly 1 in 10 adults owe medical debt.

Issue #79 – Week of March 4, 2022

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(Essay) We Should Claim Our Disabled Ancestors with Pride

New York Times (free access), February 27, 2022

We did have a lineage of disability in our family. Given that roughly one in four adults have a disability of some kind, all our families include disabled ancestors. Disability is part of every family story. But we have to know of our disabled kin to claim them. . .

We now can learn about our racial and ethnic heritage simply by spitting into a vial: millions of people have done so in order to take ownership of their identities. When it comes to disability, though, the tools of genetic testing are often used to eradicate and pathologize, not to map and connect. And they are inadequate to the task because the vast majority of disabilities are acquired over time: About 5 percent of children in the United States have a disability; among Americans 65 and older, that number leaps to about 40 percent. We need more than genetic evidence. We need narrative evidence as well. . .

Our disability lineages can only be reclaimed through the stories we uncover. This means conceiving of disability as an identity like being queer, rather than reducing it to a medical condition. . .

Finding disability lineage can mean learning to listen. To hear the untold story in euphemisms, silences, and gaps. To read between the family lines. It means looking at old photos and noting the variety of bodies and minds you see. . .

Reclaiming our disability lineage also means rethinking fundamentally what a disability is — its meaning and value. I had never thought of my Grandma Adina as disabled. I just knew that she adored me, dance in any form, and social justice, possibly in that order. Grandma Adina was also extremely hard of hearing. . .

A sense of belonging to a greater story is integral to all humans. Disability is a central part of that story — that mix of myth and fact which makes up our family lineages. In imagining a future in which I will certainly be disabled if I am lucky enough to live so long, I have my deaf grandmother to guide me. I have Rhona, in all her taffeta sass, to help me better understand and care for my daughter. And I have Cousin XY. In my dreams, he plays with my daughter in my grandfather’s house. He has her eyes.

(Essay) Farewell, Readers, It’s Been a Remarkable Ride

*New York Times, February 21, 2022

Jane Brody: “Before I go, I want to highlight the breathtaking evolution in health advice that has occurred since I joined The Times in 1965.” Jane Brody reflects on 48 years as the Personal Health columnist

(Interview) Worker shortage hitting nursing homes hard

Boston 25 News, March 2, 2022
Job losses leading to family worries about care.
Interview with Dignity Alliance Massachusetts member, Doris Bardwell.

(Report) What impact has the coronavirus pandemic had on health employment?

Peterson Center on Healthcare – Kaiser Family Foundation, December 10, 2022
The health sector saw a sharp drop in revenues and employment at the onset of COVID-19 in the spring of 2020. Health services utilization dropped precipitously as providers cancelled elective care and patients practicing social distancing avoided health facilities. Utilization of health services has remained somewhat lower than expected based on utilization levels in years before the pandemic and health sector employment remains below pre-pandemic levels.

  • Unlike during past recessions, health employment fell drastically in early 2020
  • Nursing homes and community care facilities show continued decreases in employment while other components have nearly recovered
  • Health sector employment remains below expectations, particularly for home health services and community care centers for the elderly
  • Job openings in the health sector, like the rest of the economy, are higher than pre-pandemic levels
  • Job quits hit all-time highs in all sectors, including health & social assistance
  • Unemployment rates among non-hospital health workers have increased for women and decreased for men
  • Average weekly earnings have increased steadily among all employees, including health sector employees, since the beginning of the pandemic
  • Home- and community-based care employees have seen higher average wage increases than employees who work in a clinical setting

Issue #78 – Week of February 25, 2022

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(Essay) Lessons from Dr. Salk

Salem News, February 18, 2022

There are still millions of polio survivors in the United States and around the world. But I am not writing about us today. I am writing about the near eradication of polio, a virus that particularly struck infants and adolescents.

The polio virus was very contagious and was a crippling and a killing disease that attacked the central nervous system, sometimes causing paralysis, with the most serious cases requiring what was called the “iron lung” to breathe. This was a feared disease, with parents guarding their children, and making efforts to keep them from areas where they thought they might “catch it”.  . .

I believe that the parents of the 1950s courageously brought their children to be vaccinated against the dreaded poliovirus. They knew they had to do it to protect them. I do not remember, nor ever heard of stories of any parents refusing to have their children vaccinated, and we, as children (yes, even those of us who had already had polio), dutifully lined up to be vaccinated. and still I remember clearly a boy who fainted right in front of me after having just received his shot. That gave me pause for a second or two, and then I stepped right up with a little hesitation and took my turn. . .

Vaccines are safe and effective. Researchers have worked on vaccines for a few hundred years.

Receiving the COVID-19 vaccine has nothing to do with your own personal right not to take the vaccine. There really should be no question about taking it. Taking the vaccine is about protecting you, your children, your parents, your friends, and neighbors. But it is more than that. Taking the vaccine is for the common good, for humanity. This really is a responsibility that we all share.

(Report) The Effectiveness of Government Masking Mandates On COVID-19 County-Level Case Incidence Across the United States, 2020

*Health Affairs, February 16, 2022
Evidence for the effectiveness of masking on SARS-CoV-2 transmission at the individual level has accumulated, but the additional benefit of community-level mandates is less certain. In this observational study of matched cohorts from 394 US counties between March 21 and October 20, 2020, we estimated the association between county-level public masking mandates and daily COVID-19 case incidence. On average, the daily case incidence per 100,000 people in masked counties compared with unmasked counties declined by 23 percent at four weeks, 33 percent at six weeks, and 16 percent across six weeks postintervention. The beneficial effect varied across regions of different population densities and political leanings. The most concentrated effects of masking mandates were seen in urban counties; the benefit of the mandates was potentially stronger within Republican-leaning counties. Although benefits were not equally distributed in all regions, masking mandates conferred benefit in reducing community case incidence during an early period of the COVID-19 pandemic.

(Report) What I Learned from My Family’s Home Health Experience

Health Affairs Forefront, February 16, 2022
COVID-19 has opened the floodgates for health care at home options. Public health emergency waivers are fast-tracking telehealth and hospital at home—which provides hospital-level care in patients’ homes—while infection concerns have driven more patients to home health following a hospitalization. These services and models are part of a growing list of home-based medical care models that also includes in-home primary or palliative care, in-home dialysis, and paramedicine. Some are covered through traditional Medicare, and others are available only through Medicare Advantage plans. . . Before we can migrate more health care into the home, we need to take a hard look at our performance with the current Medicare home-based benefits: home health and hospice. . .
The Future of Health Care at Home
The Medicare home health and hospice benefits are not the same as primary care at home or hospital at home models. But as the latter two increasingly become included as plan benefits, and as we work to improve the former, policy makers should keep in mind that organizing and delivering services at home can create challenges for patients and their families. The home setting, more than any other, requires that we:

  • Fund and value good coordination and accountability for service delivery;
  • Equip patients and family members to perform medical tasks, according to their preferences and abilities; and
  • Ensure that the varied services and supports are delivered in the appropriate amount, mix, and cadence to meet the needs of all patients.

As we move forward in designing new payment systems for health care at home, there must be an entity—such as a primary care organization, for example—with annualized accountability for delivering high-value care in the home, even if the care is delivered and financed episodically. And furthermore, these accountable entities must have some flexibility in determining the types, mix, and cadence of services. They must also be accountable for care coordination and integration across services and providers.

(Report) The Need for Disability Documentation in The Electronic Health Record

Health Affairs Forefront, February 14, 2022
An underrecognized medium for improving the quality of care for patients with disabilities is the electronic health record (EHR). . .
In February 2014, the Department of Health and Human Services (HHS) proposed a rule in “Electronic Health Record (EHR) Certification Criteria; Interoperability Updates and Regulatory Improvements” that required EHRs to include the capability to record disability status. Informed by Section 4302 of the Affordable Care Act, this report also proposed seven questions to be asked to patients surrounding disability and sought input on these. Later, a 2020 study that interviewed patients with disabilities about proposed changes in the health care system identified that almost all patients preferred for data about their disability to be in the EHR and available to all their care teams. In 2022, there remains significant variability in recording of disability and accommodations—while these data are largely absent in EHRs, they are sometimes buried in charts or documented in a limited way that care teams cannot easily reference
EHRs should be required to contain structure to document a patient’s type of disability, history of disability, accommodations required in the health care setting, autonomy in activities of daily living (ADLs), and preferred language surrounding disability. All disability information that is documented should come from patients themselves—questions asked should be patient-centered and inclusive of the diversity of ways in which patients may identify. There should also be a capacity to document changes in these metrics over time. Standardized EHR structure, in addition to facilitating documentation, ensures that we consistently address and accommodate the full spectrum of disabilities that patients may have, including disabilities that are invisible.
After standardizing the incorporation of the disability status of patients into EHRs, it is critical for these additions to be communicated to all members of patient care teams. Changes in system capabilities will not meaningfully improve disability documentation if health care professionals, staff, and trainees are not educated on appropriately documenting information based on their clinical encounters. Federal policies that mandate the standardized completion of this information and tie completion to hospital incentives over time would also globally improve input of disability data in the EHR. This could take the form of including disability in meaningful use criteria for EHRs produced by the Office of the National Coordinator for Health Information Technology in HHS. . .
Ableism and the explicit prioritization of certain types of bodies and minds over others are roadblocks to progress in these sectors.
Amidst necessary and ongoing reform, all members of the health care team who interface with patients with disabilities have the shared experience of referencing their EHRs. Implementing standard documentation of disability in the EHR can thus centralize our efforts to better our care for patients with disabilities—it will prompt regular clinical conversations with all patients about their disabilities, help us recognize what accommodations patients may need and invest in these, and facilitate research that furthers our understanding of inequities experienced by patients with disabilities and how to address them.

(Report) America’s Rental Housing 2022

Joint Center for Housing Studies of Harvard University
Rental housing demand came roaring back in the second year of the pandemic, reducing vacancy rates and driving up rents. However, lower-income households that took the brunt of job losses still struggle to make rent, reinforcing the stark divide between higher- and lower-income households. The need for a permanent, fully funded housing safety net is more urgent than ever, and a key element of that support must be to protect existing rental housing from the threat of climate change.

(Report) Making the Rent: Household Spending Strategies During the COVID-19 Pandemic

Joint Center for Housing Studies of Harvard University, January 27, 2022
As has been well documented, the financial impact of the pandemic has disproportionally impacted renters, leading to high shares who have fallen behind on rent. Less well recognized are the many ways that renters tapped a range of financial resources to make rent even in the face of income lost due to the pandemic. To fill this gap in what is known about the financial impacts of the pandemic, this paper analyzes data from the Census Bureau’s Household Pulse Survey to identify the financial resources utilized by renters to meet their expenses after losing income. The results indicate that renters relied on numerous and varied financial resources, in many possible combinations, in response to a financial shock. Lower-income renters and renters of color, in particular, have relied on both a range of government supports as well as drawn from a broad spectrum of personal resources, including savings and credit. Lower-income renters and renters of color are also much more likely to rely on borrowing from family and friends to pay their expenses. The findings indicate that the financial impacts of the pandemic are deeper than estimates of rent arrears alone would suggest and extend beyond the households who lost income, given those households’ reliance on social networks to provide financial support.

Issue #77 – Week of February 18, 2022

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(Essay) One Day, I Couldn’t See Right. My Life Hasn’t Been the Same Since.

*New York Times, February 15, 2022

by Frank Bruni

The paradox of my own situation — I was outwardly unchanged but roiling inside — made me newly alert to a fundamental truth: There’s almost always a discrepancy between how people appear to us and what they’re actually experiencing; between their public gloss and private mess; between their tally of accomplishments — measured in money, rankings, ratings, and awards — and a hidden, more consequential accounting. I’d long known that. We all do. But I’m not sure how keenly we register it, how steadily we remember it.

And that truth helped me reframe the silly question “Why me?” into the smarter “Why not me?” It was a guard against anger, an antidote to self-pity, so much of which hinges on the conviction, usually a delusion, that you’re grinding out your days while the people around you glide through theirs, that you’ve landed in the bramble to their clover. To feel sorry for yourself is to ignore that everyone is vulnerable to intense pain and that almost everyone has worked or is working through some version of it.

(Video) Ageism and Nursing Homes: Does Anyone Care?

Transformation Tuesdays – Gray Panthers of New York City


  • Margaret Gullette, Writer & Lecturer; Age Critic; Resident Scholar Women’s Studies Research Center, Brandeis University[Member: Dignity Alliance Massachusetts]
  • Beth Finkel, State Director, AARP New York
  • Lori Porter, Cofounder & CEO, National Association of Health Care Assistants

Issue #76 – Week of February 11, 2022

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(Article) Over 200,000 Residents and Staff in Long-Term Care Facilities Have Died From COVID-19

Kaiser Family Foundation, February 3, 2022

More than 200,000 long-term care facility (LTCF) residents and staff have died due to COVID since the start of the pandemic (Figure 1). The CDC’s latest update reporting data on nursing home deaths as of January 30th pushes the reported number of deaths over this bleak milestone. This finding comes at a time when the national surge in cases due to the Omicron variant has started to subside, deaths are rising nationwide, and nursing homes have been working to increase vaccination and booster rates among residents and staff, particularly in light of the new federal rule requiring staff vaccination recently allowed to take effect by the Supreme Court. As of January 16th, approximately 82% of nursing home staff and 87% of nursing home residents are fully vaccinated.

This death count is based on state and federal data sources. For the period between March 2020 and June 2021, the total number of deaths is based on state-reported data on LTCFs, including nursing homes, assisted living, and group homes, that summed to 187,000 resident and staff deaths. For the subsequent period between July 2021 and January 2022, we incorporated data reported to the federal government by nursing facilities (excluding other types of LTCFs), adding another 14,000 resident and staff deaths to the total. The total number of resident and staff deaths from these two sources, roughly 201,000, is likely an undercount of the true number of resident and staff deaths in LTCFs since it excludes deaths in long-term care settings other than nursing homes after June 30th, 2021. Additionally, not all states reported data on all types of LTCFs prior to June 2021.

COVID-19 deaths in LTCFs make up at least 23% of all COVID-19 deaths in the US (Figure 1). This share has decreased since the start of the pandemic, when LTCF deaths were nearly half of all deaths nationally. This share has dropped over time for a number of reasons, including high rates of vaccination among residents, rising vaccination rates among staff, an increased emphasis on infection control procedures, declining nursing home occupancy, and the lack of data on deaths in assisted living and LTCFs other than nursing homes in recent months. Despite this drop as a share of total deaths, nursing homes have continued to experience disproportionately high case and death rates in the country during the recent surge. Higher case rates may be attributed to the highly transmissible nature of Omicron and the nature of congregate care settings. Higher death rates may be attributed to the high-risk status of those who reside in nursing homes.

COVID-19 data that includes settings across the care continuum is essential to comprehensively assess the impact of COVID-19 on seniors and people with disabilities. To date, the federal government only requires data on COVID-19 cases, deaths, testing, and vaccinations from Medicare and Medicaid-certified nursing facilities. However, there is ample research suggesting that that LTSS users in congregate community based settings outside of nursing homes also face elevated risks of COVID-19 infection due to health conditions and the higher levels of infection transmission in some non-nursing facility congregate settings such as assisted living facilities and group homes. Nearly one million people live in assisted living facilities, a population roughly the size of the nursing home population, but one that lacks comparable data. The data gap for all settings across the care continuum makes it difficult to assess the full impact of the pandemic on seniors and people with disabilities residing outside of nursing homes. Additionally, the federal health care worker vaccine mandate does not apply to all settings across the care continuum, possibly leading to COVID-19 infections with resulting staff shortages in these settings.

Data is not available on the demographics of those who died in long-term care settings, making it difficult to understand the impact of race/ethnicity, age, vaccination status, and other key characteristics on infection severity or likelihood of mortality in LTCFs. While federally available data provides insight into the numbers of cases, deaths, and vaccinations as reported by nursing homes, gaps in data limit the ability to assess the impact more directly among residents and staff, by patient characteristics. Overall, cases and deaths in nursing homes appear to be declining. However, this analysis confirms the disproportionate toll of COVID-19 on people living and working in LTCFs and highlights the importance of comprehensive, timely, and accurate data.

(Essay) The Doctor Will See You Now—Wait, Not You

Wall Street Journal, February 8, 2022

Physicians, losing patience with their patients, forget their obligation to care.

Doctors are increasingly refusing to treat the unvaccinated. Physicians in Alabama, Florida, the District of Columbia, and Toronto have dismissed unvaccinated patients from their practices. A Texas task force has considered reserving beds in intensive-care units solely for the vaccinated. . . But refusing to care for the unvaccinated can itself inflict harm. Nearly 1 in 5 healthcare workers have left their jobs during the pandemic. Nursing shortages abound. There’s no guarantee that patients dismissed by one clinician will find another. Patients may not be able to fill prescriptions or manage chronic conditions. Many will eventually wind up in the hospital, which can only worsen staffing and supply shortages. Doctors who seek to punish the unvaccinated end up punishing their own colleagues.

What’s more, refusing to treat patients amplifies divisiveness at a time when cultural and ideological divisions seem stronger than ever.

(Report) One Million Deaths: The Hole the Pandemic Made in U.S. Society

Wall Street Journal, January 31, 2022

Covid-19 has been directly responsible for most of the fatalities, but the disease is also unraveling families and communities in subtler ways.

Federal authorities estimate that 987,456 more people have died since early 2020 than would have otherwise been expected, based on long-term trends. People killed by coronavirus infections account for the overwhelming majority of cases. Thousands more died from derivative causes, like disruptions in their healthcare and a spike in overdoses.

Covid-19 has left the same proportion of the population dead—about 0.3%—as did World War II, and in less time.

Unlike the 1918 flu pandemic or major wars, which hit younger people, Covid-19 has been particularly hard on vulnerable seniors. It has also killed thousands of front-line workers and disproportionately affected minority populations. . .

It could take years to fully realize the lasting social changes the pandemic and its human toll will yield. Major wars can redraw maps, shift the balance of global power and leave memorials in the nation’s capital. The pandemic is a reminder our biggest enemies are often too small to see. . .

In 2019, the U.S. recorded 2.85 million deaths, following a climb of about 1.6% a year over the decade as the population grew and aged. In 2020, the number ballooned by 18.5% to 3.38 million deaths. Last year, provisional data show 3.42 million deaths.

The CDC has registered roughly 875,000 Covid-19 fatalities on death certificates. In at least 90% of those cases, the disease is listed as the underlying cause, the agency said. For the remainder, it was listed as a contributing cause. . .

One study, published in the scientific journal PLOS One last September estimates that roughly 7.4 million years of life were lost in the U.S. in 2020 alone, with 73% of them attributable directly to Covid-19. . .

The federal government has counted more than 145,000 Covid-19 deaths among nursing-home residents, most in the pandemic’s first year, before vaccines curbed the risk faced by this vulnerable population. At least 2,250 nursing-home staffers have died from Covid-19, too.

Overall, the excess death toll includes about 140,000 people of prime working age—25 to 54, according to the Journal’s analysis.

Through the end of December, about 192,500 children under 18 have lost a parent or another primary caregiver to Covid-19, said Susan Hillis, lead author of a recent CDC report on the topic. Nonwhite children faced the steepest loss, she said. . .

The pandemic exposed racial and ethnic disparities that already lurked in health outcomes. These disparities are one reason why the U.S. had a particularly high proportion of people who died in middle age or younger, said Dr. Woolf, who has studied the issue. . .

In explaining the overall excess death count, epidemiologists believe many Covid-19 deaths were never properly recorded as such, and that there were significant fatalities resulting from other kinds of health and social problems that became amplified by the pandemic. . .

A surge in deaths among people with Alzheimer’s disease and dementia underscored a more direct impact: major disruptions in care, including as Covid-19 barreled through nursing homes and isolated seniors with significant care needs from their families. There is also evidence of rising deaths from other issues, including heart attacks, which could be linked to patients avoiding hospitals grappling with Covid-19 cases, physicians have said. Some of these surging health problems appeared most concentrated in the pandemic’s early days. . .

Meantime, U.S. drug overdose deaths, already at record highs, soared about 30% in 2020, and early data show the toll may have worsened last year. The pandemic was destabilizing for people already struggling with addiction, or trying to seek sobriety, parents of recent overdose victims say. . .

Epidemiologists say higher vaccination rates would have saved many people. Some of the hardest-hit places last year, in excess deaths per 100,000 residents, are Southern states with lower-than-average vaccination rates, federal data show. The U.S. has wide disparities in vaccine adoption, recently ranging from a 52.5% full-vaccination rate among Alabama’s eligible population to 83.2% in Vermont and Rhode Island.

Issue #75 – Week of February 4, 2022

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It’s Misleading to Call Addiction a Disease

New York Times (free access), January 15, 2022

Annual U.S. overdose deaths recently topped 100,000, a record for a single year, and that milestone demonstrates the tragic insufficiency of our current “addiction as disease” paradigm. Thinking of addiction as a disease might simply imply that medicine can help, but disease language also oversimplifies the story and leads to the view that medical science is the single best framework for understanding addiction. Addiction becomes an individual problem, reduced to the level of biology alone. This narrows the view of a complex problem that requires community support and healing. . .

It’s imperative to be careful about these types of deterministic stories. Such reductionistic narratives were repeatedly used as a justification for racist, oppressive crackdowns in the United States, on Chinese opium smoking at the turn of the 20th century and on crack cocaine in the 1980s, which was painted as a problem primarily in Black neighborhoods. Today, amid the opioid overdose epidemic, addiction is more likely to be called a disease, but the language of disease has not done away with the misleading notion that drugs hold all the power. . .

Not all drug problems are problems of addiction, and drug problems are strongly influenced by health inequities and injustice, like a lack of access to meaningful work, unstable housing, and outright oppression. The disease notion, however, obscures those facts and narrows our view to counterproductive criminal responses, like harsh prohibitionist crackdowns.

In contrast, today, descriptions of “brain disease” imply that people have no capacity for choice or self-control. This strategy is meant to evoke compassion, but it can backfire. Studies have found that biological explanations for mental disorders increase aversion and pessimism toward people with psychological problems, including addiction. What’s needed now more than ever, with overdose deaths on the rise, is not fatalism or dehumanization, but hope. . .

[A]ddiction is profoundly ordinary, contiguous with all of human suffering. We cannot end it, we certainly cannot cure it, and medicine alone will never save us. But if we drop the idea of disease and open up to a fuller picture of addiction, it will allow for more nuance, care and compassion.

Issue #74 – Week of January 28, 2022

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Hospital patient without COVID shot denied heart transplant

Associated Press, January 27, 2022

[Brigham and Women’s Hospital] is defending itself after a man’s family claimed he was denied a new heart for refusing to be vaccinated against COVID-19, saying most transplant programs around the country set similar requirements to improve patients’ chances of survival. . . The hospital said research has shown that transplant recipients are at higher risk than non-transplant patients of dying from COVID-19, and that its policies are in line with the recommendations of the American Society of Transplantation and other health organizations.

Issue #73 – Week of January 21, 2022

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Issue #72 – Week of January 14, 2022

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Covid-19 Cases Surge at Nursing Homes

Report in the *Wall Street Journal, January 11, 2022

Cases among staff climb to a new high, while the tally among residents is near the record, according to CDC data. . .

The Covid-19 surge fueled by the Omicron variant is hitting nursing homes hard, with the highest number of cases ever documented among staffers and a near-record tally of residents also testing positive, according to new federal data.

The increases among staff are posing an operational challenge for facilities that have been struggling with worker shortages for months, while a surge in patient cases threatens a return of serious illness and death among residents.

In the week ending Jan. 9, there were 32,061 new confirmed Covid-19 cases among nursing-home residents, up from 18,186 a week earlier and 6,406 the week before that, according to new Centers for Disease Control and Prevention data.

The recent week’s total was close to the highest documented weekly level, which surpassed 34,000 in December 2020. The CDC data only go back to late May 2020.

Cases among staffers are rising even more sharply. In the most recent week of CDC data, there were 57,243 Covid-19 cases among nursing-home staffers, 36% higher than the previous week’s total and nearly double the peak the CDC documented in December 2020. . .

The swelling Covid-19 case numbers in nursing homes are also feeding worries that the facilities could see another wave of serious illness and mortality among their frail occupants, who routinely accounted for a third or more of Covid-19 deaths in the U.S. during early periods of the pandemic. . .

About 87% of nursing-home residents are vaccinated, and about 62% of those people have received a booster dose, recent CDC data show. The rate of Covid-19 cases is much lower among those who have gotten a third vaccine shot, a CDC spokeswoman said. . .

Webster at Rye, in New Hampshire, had no Covid-19 cases among residents until an outbreak in November 2021, when 32 were infected with the virus and six died. Residents were all vaccinated and had been scheduled to receive their booster shots when the outbreak happened.

‘Magic’ Multigenerational Housing Aims to Alleviate Social Isolation

Report in the *Wall Street Journal, January 10, 2022

Two co-living communities set to break ground this year seek to address loneliness, as well as the caregiving and affordable-housing shortages, in the U.S. . .

The U.S. is facing an aging population, a shortage of caregivers, a dearth of affordable housing and an increase in social isolation that threatens well-being. Some think what we really need is Magic.

That is, multi-ability, multigenerational, inclusive co-living, or communities where young and old, families and singles, live side by side, supported by inclusive design, technology, and neighbors. Rethinking community in this way could reshape how and where older adults and people with disabilities live and receive care, while building symbiotic relationships between people of all ages, supporters say.

Magic is the brainchild of geriatrician William Thomas, who spent decades working to improve long-term care. Spurred by a belief that segregating older adults, as well as people with special needs, negatively impacts their well-being, Dr. Thomas co-founded Kallimos Communities to develop neighborhoods based on Magic principles. Groundbreaking is expected to begin in the second half of 2022 on two neighboring 7.5-acre communities in Colorado—the first of what he hopes will be many across the country. . .

Intentional intergenerational models exist in small pockets around the country, where preschools operate in assisted living facilities, and on a grand scale in Singapore, he says, where the government is spending $2.4 billion to build three-generation flats and housing developments that have space for both elder care and child care.

Creating new communities, rather than offering services in existing ones, faces special challenges, including startup costs and getting people to move into them. About 70% of adults 50 and older want to “age in place,” remaining in their homes for the long term, according to a 2021 AARP survey of nearly 3,000 U.S. adults.

Issue #71 – Week of January 7, 2022

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Nursing homes at a tipping point: Many are forced to freeze admissions, stranding patients in hospitals for weeks

News Article in the Boston Globe *, January 5, 2022

Already crowded hospitals across Massachusetts are being forced to keep patients on their wards for weeks after they would otherwise be discharged for rehabilitation or long-term care because there are so few available spaces at nursing homes struggling to stay open amid the Omicron surge. . .

Nursing home industry leaders say they are verging on a crisis. Acutely short-staffed even before the surge, they are facing growing numbers of workers sidelined by infections, spot shortages of rapid test kits, and a state rule many say is outdated that forces them to intermittently freeze admissions. As a result, hospitals across the state, slammed with record numbers of severely ill patients sick with COVID and other conditions, are facing critical bottlenecks at a time when their capacity is at peak levels.

Fixing Massachusetts’ nursing homes is a complex problem; here are some of the ways lawmakers are trying to do it

News Article in the Berkshire Eagle, January 5, 2022

Better wages for workers, improved reimbursements for facilities and increased support for nursing home alternatives are all pieces of the complicated puzzle that is nursing home reform

Massachusetts needed nursing home reform even before the pandemic, people say. Now, the stakes are higher.

State Sen. Patricia Jehlen, a Somerville Democrat who co-chairs the Joint Committee on Elder Affairs, said she believes the pandemic has moved legislative leaders to pursue changes.

Even so, addressing long-term care problems in Berkshire County — and across the state — demands different solutions.

Better wages for workers, improved reimbursements for facilities and increased support for nursing home alternatives are all on the table, Jehlen said. . .

The elder affairs committee is weighing the association’s testimony along with the support that the Dignity Alliance and its member organizations have provided for the bill, said state Rep. Thomas Stanley, D-Waltham, who co-chairs the committee with Jehlen. . .

A “nursing home quality jobs initiative” would require MassHealth to fund a “living wage rate add-on” for care workers, and another bill seeks to stabilize nursing facilities’ finances.

Former state Sen. Richard Moore, who serves as Dignity Alliance’s legislative chair, said the coalition has reviewed those proposals and declined to support them due to the potential for “cost-shifting” that would increase profits for facility operators.

“If MassHealth picked up the cost, are the savings going to be passed on as a profit to the owners?” Moore asked. “We’ve been working with some folks from the SEIU that represent some of the workers in nursing homes, and I think they tend to have the interests of the workers in mind more than management does.”. . .

Even before the pandemic, Massachusetts residents had been showing greater interest in alternatives to nursing homes.

More older adults are choosing to “age in community” or “age in place” rather than seek institutional care in nursing homes, the Executive Office of Health and Human Services reported in 2019. One in six nursing homes in the state, it found, had low occupancy, defined as filling below 80 percent of available beds.

Still, some regulations and restrictions prevent people who may not need nursing care from accessing more independent alternatives, Jehlen said.

“There are people in nursing homes who don’t need to be there if we strengthen the rest of the continuum,” she said. “In order to pay adequate rates for people who need that care, we need to strengthen the less expensive and less restrictive services.”

Coronavirus is renewing a call to abolish nursing homes

Essay in Quartz, June 25, 2020

“There’s been a very interesting divide between disability rights groups and, for want of a better expression, elder rights groups, because the elder rights groups seem to be okay with some form of institutionalization,” said Gerard Quinn, an Irish legal scholar who helped draft a landmark United Nations convention on disability rights, and who has recently argued for the gradual abolition of nursing homes.

But since Covid-19, Quinn added, “a lot of the elders rights groups now are turning completely around and beginning to understand the importance of living well in the community with adequate supports.”

In the US, such ambitions have run up against the challenges of remaking the nursing home industry, largely funded by billions of dollars in federal Medicare and Medicaid payouts. . .

[T]he stakes of reform, advocates agree, are high — and have only become clearer during the current pandemic. “We have, since Covid began, received a lot of calls from people desperate to leave facilities,” said Dooha. Through calls from residents and staff, she added, her organization has “learned that conditions in facilities are utterly deplorable.” Those conditions, Dooha says, should cause more people to question a system that, in the US alone, houses around 1.3 million people. . .

A major 2018 survey from AARP, the aging-advocacy organization, reported that close to four in five Americans aged 50 and above prefer to age at home. “Most older people are anxious about the prospect of moving into a nursing home,” a recent analysis of studies in high-income countries reported, and studies consistently show high rates of depression in facilities. . .

For years before Covid-19, researchers have warned that norovirus, influenza, and other infections can spread rapidly in nursing facilities. Those risks have increased in recent years, as nursing homes take in more short-term residents who are getting rehabilitation after hospital visits, and who potentially bring infections into the building with them. . .

Advocates say that these and other problems have only intensified as large companies began buying and consolidating nursing home franchises. Around 70% of nursing homes in the US are under for-profit ownership, and, since the 2000s, private equity firms have purchased many facilities, hoping to cut costs and increase profits. One recent analysis, published by the New York University Stern School of Business, found “robust evidence” that private equity buyouts were linked to “declines in patient health and compliance with care standards.” . . .

What a new system may look like is unclear, and some advocates argue that the structural problems that plague nursing homes won’t be solved by increased regulation or funding. “You can’t throw any more money into this institutional model.” . . .

And experts and advocates agree that obstacles to deinstitutionalizing elder care abound. Cameron, the Adapt organizer, points out that it would be difficult to close nursing homes without offering more affordable housing options in the community. Another limiting factor is labor. Transition to home-based care would require more home health care workers—many of whom work for lower pay, and with fewer labor protections, than their counterparts in facilities. In some places, there are already too few people willing to fill those roles.

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