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New program aims to provide seniors with home-based alternative to nursing facility care

By Abolish Nursing HomesNo Comments

In an effort to help Illinois seniors stay in their homes for longer, officials announced Monday the state will be participating in a new federal program that could provide them with an alternative to nursing facility care.

In a statement, Gov. J.B. Pritzker said the Program of All-Inclusive Care for the Elderly (PACE) would expand seniors’ options for community-based services.

“Here in Illinois, we recognize that our elders thrive when they remain in our communities as they age,” Pritzker said. “The PACE program is an innovative model that delivers a much-needed alternative to traditional nursing facility care.”

The program will be available to qualifying seniors eligible for Medicare and Medicaid, who are 55 and older, live within a PACE service area and meet the state’s standard of qualifying for nursing home care, while also being able to live safely at home.

State officials identified five health care organizations in Chicago as PACE partners.

Esperanza Health Centers and Annie’s Place PACE will provide services for residents living on the South Side, and Kinship PACE of Illinois, Lawndale Christian Health Center and PACE of Southwest Chicago will serve residents on the West Side.

All still need to pass a “stringent” federal application process, which the state’s Department of Healthcare and Family Services said they would be supporting the organizations through.

For that reason, “It will yet be a while before we actually start enrolling participants and delivering service,” Ricardo Cifuentes, a spokesman for Esperanza Health Centers, said Tuesday. “But still, the announcement is a major win and will help create more options for seniors on the South and West sides of Chicago.”

State officials said they anticipate the program will start providing services in 2024.

More than 30 states already participate in PACE, according to Cifuentes.

Services available through the program include adult day care, occupational therapy programs, dental care, meals and access to prescription drugs, according to Cifuentes.

“It’s also a big benefit for caretaker families who must often sacrifice work hours and other responsibilities to tend to the needs of frail and elderly parents,” Cifuentes said.

If a senior enrolled in the program eventually needs nursing home care, “PACE will fund that and continue to coordinate the patient’s care,” the family services department said.

Heidi Ortolaza-Alvear, vice president of strategy and business development for Esperanza, said the PACE model has shown it can prevent or delay nursing home placement and reduce emergency room visits “because you’re catching things early.”

“The end goal really is to help people age in place,” Ortolaza-Alvear said.

The program also helps seniors find opportunities to socialize, including through arts and crafts programing, as isolation can contribute to declines in health.

“That’s another element of this model and why there’s this whole socialization component to it is really to get people to have time to spend engaged with folks in their community,” Ortolaza-Alvear said.

Michael Loria is a staff reporter at the Chicago Sun-Times via Report for America, a not-for-profit journalism program that aims to bolster the paper’s coverage of communities on the South and West sides.

Biden’s unlikely to get his full funding ask for home health care

By Abolish Nursing HomesNo Comments

President Biden called for a $400 billion investment in home-care for the elderly and the disabled. But signs point to Congress missing the mark — and by a lot.

Last week, a key House committee pitched spending less than half of what Biden wanted. Privately, some lawmakers and advocates are pushing Congress for more funding, asks that range from $250 billion to $400 billion.

Democrats are wrestling with how to stuff all of their health-care priorities into a massive social spending bill. And the home-care dynamic is yet another example of how funding for a key policy, even one Biden himself pitched, could be scaled back significantly. As one Democratic aide put it, “tough choices have to be made.”

Yet, now is a critical moment for changing how the country cares for older adults and the disabled, supporters of robust funding argue. The coronavirus pandemic swept through nursing homes, killing nearly 135,000 residents and sparking fresh demands for the government to put more dollars into helping people stay out of institutional settings.

Competing priorities

Lawmakers are learning it’s easier said than done. 

Here’s the state of play: 

  • Earlier this summer, the thinking in the Senate was that the in-home care policy may dip as low as $150 billion to fit within the $3.5 trillion budget agreement, according to four sources familiar with the negotiations. But there’s a push to increase that number.
  • The House Energy and Commerce panel, which will mark up its plan today, put $190 billion toward Medicaid’s home and community-based services. That came as a pleasant surprise to some advocates, and even Hill aides, who were anticipating a number closer to $150 billion, according to multiple sources.
  • The Senate is still hashing out its plan. Negotiations are still very much in flux on a wide range of key health-care policies in the upper chamber. The White House declined to comment.
Moving home

States have historically used their Medicaid dollars to pay for nursing homes, rather than care inside the home — which can include everything from help eating and dressing, to physical therapy and nursing care. Waitlists for these services are often long, and finding care can be a complex process.

Lawmakers see a need for a shift. Sen. Bob Casey (D-Pa.), who chairs Congress’ aging committee, is the leading champion of the call for change in the Senate. He authored a bicameral bill with Rep. Debbie Dingell (D-Mich.), who’s a vocal advocate for expanding in-home care after her husband, a longtime congressman, was able to receive care at home.

  • Casey is pushing for Democrats’ $3.5 trillion package to put roughly $250 billion toward Medicaid’s in-home services, according to a Senate aide. He believes that amount of cash could be enough to implement the changes to the system his bill envisions.

But some advocacy groups contend more money is needed to be able to clear waitlist backlogs and pass on wage increases to underpaid staff.

The issue is top of mind for the Service Employees International Union, a labor giant whose membership includes home-care workers and is fighting for the full $400 billion. Mary Kay Henry, SEIU’s international president, said those members “are the most politically active part of our membership” and give the most to the union’s political action fund.

SEIU President Mary Kay Henry speaks at a 2019 Democratic presidential debate. (Scott Olson/Getty Images)
  • SEIU is piling on the pressure in a new $3.5 million TV and digital ad buy, shared first with The Health 202. The campaign will go to the end of the month and run TV ads in places like Arizona, West Virginia and Washington, D.C.
  • In an interview, Henry threatened to withhold funding from politicians who don’t back a robust infusion of cash. “We don’t intend to give one penny, one phone call, one door knock, any mobilization of our members to support anybody’s re-election that doesn’t back a strong investment on care,” she said.


Departing FDA officials argue boosters aren’t yet necessary

An international group of scientists came out against booster shots in a review published Monday in The Lancet.

Among the co-authors of the paper are two outgoing Food and Drug Administration vaccine regulators: Marion Gruber, who leads the Office of Vaccines Research and Review, and Philip Krause, her deputy, The Post’s Ben Guarino and Laurie McGinley report.

The authors argue there is not yet enough evidence that vaccines are showing a substantial decline in their ability to protect against severe disease. They point out that boosters could increase the risks of side effects, which could strengthen resistance to the shots among the unvaccinated. But they acknowledged booster shots may be needed, should future evidence support that.

Yet, there are people who need the shots more, said study author Ana-Maria Henao-Restrepo, a World Health Organization epidemiologist.

“Even if some gain can ultimately be obtained from boosting,” Henao-Restrepo said, “it will not outweigh the benefits of providing initial protection to the unvaccinated.”

The delta variant is scrambling the start of the school year
Biden talks to students at Brookland Middle School in the District. (Manuel Balce Ceneta/AP)
Biden promised to get kids back in the classroom, but the highly transmissible delta variant has put that promise to the test, The Post’s Yasmeen Abutaleb, Laura Meckler and Valerie Strauss report.
  • Schools have undergone 1,700 temporary closures, according to Burbio, a data firm that tracks school reopenings.

Health officials say it’s possible for kids to return to in-person schooling safely as long as precautions are in place. But it’s not clear that schools are adhering to public health recommendations.

  • A Washington Post survey of the nation’s 20 largest school districts found that few are offering robust coronavirus screening. Meanwhile, a quarter of the nation’s largest 200 school districts are ignoring the Centers for Disease Control and Prevention’s recommendation to mandate masks.
Rapid coronavirus tests are way more expensive in the U.S.

Biden has promised to make it easier to get at-home, rapid coronavirus tests, and a deal with major retailers could knock 35 percent off the price of tests. But even after the discount, Abbott’s popular BinaxNOW two-pack will sell for more than $15.

Those prices put frequent, at-home testing out of reach for many consumers, Kaiser Health News’s Hannah Norman reports.

In Germany, grocery stores sell tests for $1 per test. The United Kingdom provides 14 free tests per person, and Canada is giving out free rapid tests to businesses.

Regulators in the U.S. have approved far fewer tests than their European counterparts, which may make it harder for new companies to enter the market and drive prices down.

How N.Y.’s Biggest For-Profit Nursing Home Group Flourishes Despite a Record of Patient Harm

By Abolish Nursing HomesNo Comments

Charlie Stewart was looking forward to getting out of the nursing home in time for his 60th birthday. On his planned release day, in late 2012, the Long Island facility instead called Stewart’s wife to say he was being sent to the hospital with a fever.

When his wife, Jeanne, met him there, the stench of rotting flesh made it difficult to sit near her husband. The small wounds on his right foot that had been healing when Stewart entered the nursing home now blackened his entire shin.

“When I saw it at the hospital … I almost threw up,” Jeanne Stewart said. “It was disgusting. I said, ‘It looks like somebody took a match to it.’ ”

Doctors told Stewart the infection in his leg was poisoning his body. To save his life, they would have to amputate above the knee.

Stewart had spent about six weeks recovering from a diabetic emergency at Avalon Gardens Rehabilitation & Health Care Center on Long Island. The nursing home is one of several in a group of for-profit homes affiliated with SentosaCare, LLC, that have a record of repeat fines, violations and complaints for deficient care in recent years.

Despite that record, SentosaCare founder Benjamin Landa, partner Bent Philipson and family members have been able to expand their nursing home ownerships in New York, easily clearing regulatory reviews meant to be a check on repeat offenders. SentosaCare is now the state’s largest nursing home network, with at least 25 facilities and nearly 5,400 beds.

That unhindered expansion highlights the continued weakness of nursing home oversight in New York, an investigation by ProPublica found, and exposes gaps in the state’s system for vetting parties who apply to buy shares in homes.

State law requires a “character-and-competence” review of buyers before a change in ownership can go through. To pass muster, other health care facilities associated with the buyers must have a record of high-quality care.

The decision maker in these deals is the state’s Public Health and Health Planning Council, a body of appointed officials, many from inside the health care industry. The council has substantial leverage to press nursing home applicants to improve quality, but an examination of dozens of transactions in recent years show that power is seldom used.

Moreover, records show that the council hasn’t always had complete information about all the violations and fines at nursing homes owned by or affiliated with applicants it reviewed. That’s because the Department of Health, which prepares character-and-competence recommendations for the council, doesn’t report them all.

The department’s assessments of Landa and other owners of SentosaCare homes have routinely found that the facilities provided a “substantially consistent high level of care” – the standard owners must meet to receive council approval.

Yet the agency’s assessments in 15 separate ownership applications since 2013 did not mention at least 20 federal fines paid by the group’s homes, records show. In more than a dozen cases, the department reported “no repeat violations,” even when a SentosaCare home had been cited multiple times for the same serious deficiency.

Many of the nursing home deals ProPublica reviewed received a go-ahead despite rules saying they “shall not be” approved when facilities have repeat violations that put residents at risk. Under a narrow interpretation of the rules, however, the department still recommends approval if violations aren’t strictly identical or were promptly addressed.

SentosaCare’s owners or associates weren’t the only applicants to get incomplete vetting, but the council has had repeated opportunities to scrutinize their records. Landa, Philipson or relatives bought shares in a dozen homes in 2013 and 2014, records show.

Advocates for nursing home patients say that instead of a backstop, New York’s approval process has become a rubber stamp.

“The law establishes mechanisms for at least a moderate review of an applicant’s character and competence,” said Richard Mollot, director of the Long Term Care Community Coalition in New York. “The failure to provide complete information on a provider’s past performance fundamentally undermines the review process.”

Mollot’s group published a recent report saying the Health Department has one of the nation’s lowest rates of citing nursing home operators for deficiencies in care. New York is also among a minority of states that don’t mandate minimum staffing ratios, even though research shows a strong link between nursing staff and residents’ well-being.

Thirteen of SentosaCare’s homes (though not Avalon Gardens) have Medicare’s bottom score for nurse staffing. Inspection reports also show that at least seven residents have wandered away from the SentosaCare affiliated facilities in recent years — including one who froze to death in 2011. Inspectors and prosecutors have found that staff falsified records in some cases. Dozens of patients at SentosaCare homes have experienced long delays before receiving necessary care; some ended up in hospitals.

The Stewarts said the staff at Avalon Gardens showed “no sense of urgency” when they complained about missed meals, soiled sheets and unanswered call bells. Even though nurses dressed the wound on Charlie’s leg daily, and a doctor checked it each week, no one warned them about its worsening condition, the Stewarts said.

Dr. Kris Alman, a retired endocrinologist who reviewed Stewart’s medical records and photographs at ProPublica’s request, said that the two quarter-sized lesions on his foot when he was admitted to Avalon Gardens could not have “become what it did overnight.” That the condition “progressed as far as it did, with him coming in septic and needing an above-the-knee amputation, was inexcusable,” Alman said.

Landa’s attorney and business partner, Howard Fensterman, declined to comment on Stewart’s case for reasons of patient privacy. Fensterman defended Avalon Gardens and other SentosaCare facilities, however, saying that when inspectors have found problems, the homes quickly addressed them and secured state approval of correction plans.

Fensterman also said that SentosaCare does not have “ownership or control” over the facilities in its network and only contracts with them to provide administrative and rehabilitation consulting, regulatory advice and purchasing services. Records show, however, that Landa and Philipson, or family members, have ownership stakes or directorships in nearly all of SentosaCare’s facilities. Fensterman also co-owns 14 nursing homes with Landa in several states, including one SentosaCare home.

Fensterman is a former member of the state health council, as is Landa, who entered the nursing home business in the late 1980s and emerged as one of the sector’s biggest players over the next decade. Landa, Philipson or family members now hold stakes in at least 33 nursing homes in New York and an equal number in nine other states.

In 2013, the latest year for which state data is available, homes under the SentosaCare umbrella paid the company more than $11.5 million for financial, staffing and other services, and spent nearly $630,000 with Fensterman’s law firm.

The nation’s $137 billion nursing home industry has made major improvements since the landmark 1987 federal Nursing Home Reform Act imposed mandates to combat abuse and neglect. But the industry, which draws heavily on taxpayer funding via Medicare and Medicaid, still struggles to provide safe care for many.

One-third of Medicare patients suffered preventable harm within a month of being admitted to nursing homes for short-term rehabilitation, according to a 2014 study by the Department of Health and Human Services’ inspector general. The harm cost Medicare $2.8 billion for hospitalizations alone in 2011, the study estimated.

New York spends about $13 billion each year on the state’s 627 nursing homes, which collectively care for more than 100,000 residents. The Department of Health is charged with day-to-day oversight of safety, but patient advocates say the agency lacks the staff and expertise to do the job adequately.

SentosaCare homes, which took in nearly $538 million from Medicare and Medicaid in 2013, aren’t the only facilities in the state with repeat violations and low staffing, and several of the company’s homes have above-average ratings on Medicare’s Nursing Home Compare web site, which rates them with one to five stars. (State-by-state inspection reports can be searched on ProPublica’s Nursing Home Inspect, which also lists deficiencies by severity level.)

But federal data through August shows that 11 of SentosaCare’s homes exceeded the state average of 24 violations over the past three years, and three had double that number.

VERIFY: This is how people in nursing homes vote

By Voting AccessNo Comments

Viewer Ellen H. sent VERIFY this question:

“I was wondering if nursing home residents get the chance to vote? If yes how do they vote? Is it by mail-in ballot or can they vote in person if able? Thank you!”

Voting for seniors in nursing homes is different this year given the risks the COVID-19 pandemic poses to those in nursing homes. The VERIFY team broke down how people in nursing homes normally vote and changes to how they vote this year.


How do nursing home residents vote?


In most elections, nursing home residents have the option of voting absentee by mail, taking transportation to a voting place, or voting within the nursing home itself.

This year, nursing home residents are likely relying on absentee ballots, however, mobile polling teams can still bring voting to the nursing home itself and there are still opportunities for residents to get to the polls.

CMS suggests both mobile polling and organizational assistance in registering to vote as well as requesting and filling out absentee ballots. They add that nursing homes are required to support a resident’s right to vote, such as by assisting with absentee or mail-in ballots or by transporting residents safely to ballot drop-boxes or polling locations. They add that social distancing should still be maintained if the facility chooses to transport fewer residents during trips.

CMS also stresses that nursing home residents must be able to fill out mail-in ballots. The organization says, “for residents who are otherwise unable to cast their ballots in person, nursing homes must ensure residents have the right to receive and send their ballots via the U.S. Postal Service.”

Those who are hospitalized just before or on Election Day also have an option to still get their vote in. The National Conference of State Legislatures says there are 38 states that allow patients to request emergency absentee ballots. These allow people to request absentee ballots after the normal deadline because of a personal emergency.

Some states will also give hospitalized patients different options. In some states, election officials will deliver absentee ballots to hospitalized patients. In other states, the hospitalized patient can choose a family member to assist with requesting, delivering and submitting an absentee ballot.

Ultimately, it varies by state and community. If you want to ensure someone you know in a nursing home gets to vote, double-check what options local laws give you.


According to the National Conference of State Legislatures, the most common way for residents to vote is by absentee ballot. However, they also say another method by which nursing home residents can vote is through mobile polling. The method is also known as supervised absentee voting, which is only permitted in some states.

Mobile polling is when a bipartisan team of workers trained by local election officials assists residents with voting within the nursing home itself. That way residents can get whatever help they need to vote without leaving the facility.

The AARP adds that in a typical election year, nursing home residents may vote in person by caravanning to the polls or with the help of friends or family. They can also vote within their own facility if the nursing home is a registered voting center. The organization also says they help with mail-in voting and assisted voting as described by the NCSL.

Earlier this month, the Center for Medicare and Medicaid Services (CMS) issued a memorandum affirming the continued right for nursing home residents to vote amid the COVID-19 pandemic. The memorandum says, “Nursing homes should have a plan to ensure residents can exercise their right to vote, whether in-person, by mail, absentee, or other authorized process.”

Find Voting Rights Violations in Nursing Homes

By Voting AccessNo Comments

Taloria Stevenson Green has voted in every election since 1972, casting her ballot at a polling place across the street from her Washington, D.C. home.  But last year, she moved into a nursing home. She still voted though — this time absentee, when local election officials came to the facility to help residents vote.

“We have a say-so in what goes on in our country,” Green, 61, told other nursing home residents at a luncheon held last month in Washington, D.C.  “I look at it as both a responsibility and a right to have my voice heard.”

But not all nursing home residents get to exercise that right.  Survey reports from the Centers for Medicare and Medicaid Services in ProPublica’s Nursing Home Inspect database show that over the past few years, dozens of nursing homes have been cited for violating residents’ voting rights.

At a nursing home in Anchorage, state inspectors reported that the facility failed to ensure residents the opportunity to vote in a municipal election.  One resident was “visibly tearful” and said she had voted in every election, according to an inspection report.

Since that survey, the facility has taken steps to address the problems.

“As part of our plan of correction, we have established a voting protocol and better publicized how residents can access absentee and special needs voting,” said Kirsten Schultz, spokesperson for Providence Health & Services Alaska. “On the day of the election, our activity coordinator will work with election officials to ensure that any residents who need assistance to vote receive the support they need.” Since July, the facility has posted information about voting and staff talked with residents about voting.

In another case, surveyors reported that a nursing home in Los Angeles failed to help residents register to vote, which “resulted in the residents being denied their right, as citizens of the United States, to vote in an election.” ProPublica has contacted the facility, but has not heard back. We will update you when we do.

“There’s a sense that you go into a nursing home and have no more rights,” said Robyn Grant, public policy director for The National Consumer Voice for Quality Long-Term Care,  “Many residents take their right very seriously and are proud to have voted in every Presidential election.”

The rights of long-term care residents are laid out in the Nursing Home Reform Act of 1987, which protects the rights of long-term care residents as citizens of the United States.

“The facility can make an enormous difference in whether residents can exercise their constitutional right to vote,” said Nina Kohn, a law professor at Syracuse University who specializes in elder law.  “The facility may have to assist residents with voting.  Residents may need to be reminded about voting.”

It’s not up to a facility to decide who should be able to vote, Kohn said. “There is no capacity test in this country for voting.”

If nursing home residents or their families feel they have been denied those rights, they should contact their state nursing home ombudsman, Grant said.

You can explore the data yourself and find more voting problems in nursing homes using Nursing Home Inspect. Search for keywords like “vote,” “voting” or “election.”  Be sure to read the reports carefully to exclude reports where voting applied to other issues, such as a vote among resident about television usage.

Hundreds of Thousands of Nursing Home Residents May Not Be Able to Vote in November Because of the Pandemic

By Voting AccessNo Comments

Walter Hutchins cast his first vote for president for Dwight D. Eisenhower in 1952, and he has voted in every election since. The last thing he wants is for his “68-year streak,” as he proudly calls it, to end in November.

An industrial engineer, Hutchins helped design the M16, the weapon of choice for American soldiers during the Vietnam War, and he invented several tools that may be currently sitting in your garage. He and his wife, Margaret, a teacher and ordained Episcopal minister whom he married the year after he voted for Ike, were “executive gypsies,” she said. They followed his jobs from Connecticut to Florida, New York and Wisconsin, until they retired to North Carolina. Wherever they were, they always voted — in fire stations, churches, their retirement community. When Walter became blind and hard of hearing, Margaret helped him in the voting booth.

This year, what stumped Hutchins, despite all his resourcefulness, was how he was going to exercise his basic constitutional right to vote during a pandemic. The Davis Community nursing home in Wilmington, North Carolina, where Hutchins has lived for two years, has barred visitors since March. Margaret, still in the retirement community nearby, can’t help him, nor can their four kids and eight grandchildren.

Neither can the nursing home staff. A 2013 state law prohibits staff at hospitals, clinics, nursing homes and rest homes from helping residents with their ballots. Some North Carolina counties, including New Hanover, where Wilmington is located, send teams into nursing homes to assist voters or bring them to polling places, but the threat of the coronavirus has limited that service as well.

As the pandemic worsened, he and Margaret began to consider a more drastic measure to keep his streak intact. “It makes me angry that something like this could happen and that we’d be denied the right to vote just because of our age and condition,” she said.

How to vote during a pandemic poses a dilemma for many Americans, who worry about the health risks of voting in person and whether the U.S. Postal Service will be able to deliver mail-in ballots on time. Such concerns are multiplied for nursing home residents.

Most, though not all, of the roughly 2.2 million Americans living in nursing homes or assisted living communities are elderly — and thus at higher risk of dying from the coronavirus. They’re also part of the most politically engaged demographic in the country. In 2018, 66% of Americans over 65 voted, compared with just 35% of those 18 to 29. In 2016, Donald Trump had an advantage over Hillary Clinton among voters 65 and older by 53% to 44%, according to the Pew Research Center.

At least 68,000 residents and staff of nursing homes and other long-term care facilities have died of COVID-19 since the pandemic outbreak began, some 41% of all coronavirus deaths in the U.S., according to a New York Times analysis. This ongoing crisis at care facilities across the country has had a troubling hidden effect: the looming mass disenfranchisement of America’s elderly and disabled. Hutchins is one of hundreds of thousands of residents of nursing homes and assisted living communities who may not be not able to vote this year because of coronavirus related-lockdowns and the failure of state and county officials to help a forgotten population of voters.

A family visits through a window at a locked-down nursing home in New York. (Stephen Speranza/The New Yor​k Times via Redux)

Family and friends who helped them vote in prior elections can’t visit them — and may have taken ill or died from COVID-19 themselves. Swing states such as Florida and Wisconsin have suspended efforts to send teams to nursing homes to assist with voting. Despite a federal law that residents must be “supported by the facility in the exercise of” their rights, two states — North Carolina and Louisiana — prohibit staff from actively doing so. While many other states allow voters to appoint a helper of their choice, voting assistance may be a low priority for understaffed institutions struggling with COVID-19 outbreaks. And polling places are being moved from nursing homes and assisted living facilities to sites less affected by the virus. For example, Somerville, Massachusetts, relocated voting from a nursing home to a school a little less than a mile away.

“The hurdles are so high for people that are living in long-term care facilities — people who don’t have access to or who need different levels of help,” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, an advocacy group. “I really think disenfranchising that entire population — we’re in real danger of that at this point.”

Under federal law, nursing homes have a duty to facilitate residents’ rights, including voting, said Nina Kohn, a distinguished scholar in elder law at Yale University. But even before the pandemic, compliance was spotty. From 2018 through 2019, Medicare documented complaints from at least 55 U.S. nursing homes in which residents said they weren’t given the opportunity to vote or were unable to get help casting a ballot. But nursing home inspectors categorized the vast majority of these complaints as low severity, meaning they were seen as inflicting little or no actual harm.

As a result, fines for violating residents’ voting rights are rare. Nursing home inspectors, Kohn said, do not take such violations seriously. “What you have is a system where the deprivation of our fundamental civil liberties never arises as being classified as real harm,” she said. “You’ve got a whole category of violations where there are virtually no consequences.”

Some nursing homes have begun adjusting procedures ahead of Nov. 3. Chris Hannon, the chief operating officer of Pointe Group Care, a nursing home operator in Massachusetts, said his staff is working to ensure residents are mailed absentee ballots. Although he hasn’t seen problems, “it becomes as challenging of a job as any other responsibility that we have,” he said.

Many nursing home residents have some degree of mental impairment — nearly half of long-term care patients suffer from dementia or Alzheimer’s. But those afflictions do not mean residents automatically lose their right to vote — competency requirements vary from state to state — and advocates say that nursing home staff often make arbitrary judgments about who can vote. More egregiously, some residents are not informed of their voting rights.

Other residents are as mentally sharp as ever — yet still may not be able to vote this year. Jay Leavitt jokingly refers to himself as a “sort of a disaster case,” a phrase that wildly undersells his productivity. A former Fulbright scholar, with a doctorate in applied mathematics, Leavitt used to run the academic computing program at the University at Buffalo. He’s 84 and is a quadrapelgic, but he’s still publishing research; his current project examines how natural resource levels affected prehistoric migratory patterns.

“I’m sort of blessed. Even though I’m a quad, my mental activities haven’t decreased. As a matter of fact, they’re probably increasing,” Leavitt said.

He normally stays in a nursing home in Hendersonville, North Carolina. But this summer he was transferred to the River Falls Rehabilitation and Healthcare Center in Slater-Marietta, South Carolina, for treatment of a wound.

Over the years, he’s voted in person or by mail, and he has helped other nursing home residents fill out their ballots. He’s even grilled local candidates about conditions in North Carolina nursing homes. Because of his disability, he can’t mark a ballot himself. His wife used to help him. But she isn’t allowed to visit him, and she is in the early stages of dementia, he said.

He’s succeeded in getting a North Carolina absentee ballot form, but he’s not sure where to send it, or how to fulfill the requirement for a witness. The River Falls staff has not discussed voting with him or offered assistance to anyone he knows, he said.

“I’m certainly very concerned” about voting, Leavitt said. “I haven’t seen anything done in this nursing home.”

After ProPublica asked about Leavitt’s experience, a River Falls spokesperson said it would provide him with any voting help he needs. The facility held a cookout in early July to register residents to vote, the spokesperson said.

“We’ve made it a top priority to help our staff and residents get involved in the electoral process and exercise their right to vote,” River Falls administrator Tkeyah Brunson said. “Just as we have worked hard to help residents communicate remotely with friends and family, we want to help our residents enjoy their normal freedoms and quality of life during these difficult times, including the ability to participate in our democracy.”

Before the pandemic, recognizing the barriers that elderly and disabled voters in institutions already faced, almost half of states offered some form of assistance. Florida’s program was typical. A trained bipartisan team appointed by the election supervisor would travel to residential care facilities and help residents fill out absentee ballots. The service was provided to any facility that had at least five people interested in voting and submitted a request at least three weeks prior to an election.

This year, Florida’s program has been suspended, leaving thousands without help in a swing state with one of the largest elderly populations. A similar program in Wisconsin, where “special voting deputies” visited nursing homes, has also been curtailed.

Karen Lee Weidig, who served as a special voting deputy in Madison, Wisconsin, for more than a decade, said she was “stunned and disappointed” that the program is not being offered this year. “The people to whom we present ballots very much want to vote, it’s a big part of their civic life,” she said. “It might be the only part of their civic life.”

Nursing homes have shut their doors to visitors, and many states have curtailed programs that provided voting assistance. (Andrew Caballero-Reynolds/AFP via Getty Images)

Some election officials in Wisconsin are trying to adjust the rules on the fly, according to internal emails obtained by ProPublica. “The assistant for the ballot cannot be an employee of the care facility,” stated part of a July presentation by Madison’s elections clerk. Soon after, an elections official indicated those rules had been relaxed following questions from a local nursing home: “Since the ballot is being mailed and SVDs are not present, the voter can designate ANYONE to help them mark their ballot (including facility staff and administrators).”

In North Carolina, individual counties decide whether to send what are known as multipartisan assistance teams (MATs). They have traditionally been funded by county resources and depend on volunteers. On Aug. 1, the state Department of Health and Human Services released guidance that “strongly encouraged” that those teams visit residents outdoors, no more than two residents at a time, and maintain 6 feet of social distance.

Officials in North Carolina counties that still plan to provide MATs told ProPublica that they will follow this guidance. But people familiar with the process said that the guidelines, though appropriate during the pandemic, will make it much harder. For one thing, not every voter is healthy enough to be outside. When North Carolina’s League of Women Voters ran an informal precursor to those teams, volunteers had to go room to room, sometimes waking residents from naps, said Vice President Marian Lewin.

Even in normal times, MATs leave voters out, Lewin said. “You’re doing this out of the good of your heart,” she said. “If the teams exist,” they may consist of five or 10 volunteers for an entire county. “By their very nature, they’re inadequate.”

Martha Roblee, 67, is a resident of the assisted living section of Scotia Village, a community care facility in Laurinburg, North Carolina. Through her work with the League of Women Voters, Roblee has been helping to educate voters at Scotia, but there are people she isn’t allowed to reach in the skilled nursing wing. “They’ve been voting for decades. Who’s going to help these people?” Roblee said.

One resident of an assisted living facility in southeastern North Carolina said she has helped other people there vote in prior elections. The woman, who suffers from a crippling genetic condition, said some of her “dearest friends” in the facility have died from COVID-19. Almost every day, she has a socially distanced lunch with her boyfriend of 15 years in the facility’s lobby, where they’re separated by tempered glass. “I have a rocking chair. He has a rocking chair,” said the woman, who requested anonymity. “He brings Big Macs and he gets on his cellphone. I get on my cellphone on speaker, and we just eat and jabber.”

Helping the elderly and disabled to vote will be very challenging in the pandemic, especially if MATs aren’t available, she said. “How would you do it?” she said. “How would you walk a senior citizen or a person with a disability through marking their legal ballot so that you knew the vote they wanted to cast was theirs? It would be a difficult thing. You would have to get into their chair and think like they do, and look at that ballot through their eyes.”

Even if state law were to allow it, she said, the staff don’t have time to help with voting. “They’re juggling all kinds of things trying to keep us from going crazy,” she said. “To put something else on them? No.” So far, she said, the facility has not even discussed voting: “We’re hard put to get our Pepsi machine filled.”

In June, to help relieve the boredom of life under a lockdown, Phoenix Assisted Care in Cary, North Carolina, posted residents’ pictures on Facebook. Each resident held a sign describing their interests and asking for pen pals from across the country. (“I like women, wrestling, eating out,” one man’s sign read.) Donna Horton, an administrator there, said that the response was “hogwild”; the posts went viral and were picked up by national news organizations. Since then, residents have received more than 110,000 letters and hundreds of packages.

But Phoenix hasn’t come up with a similar innovation to enable residents to vote. In past years, about 40 have voted, usually in person, Horton said. This year she isn’t sure what her facility will do, or if MATs will be enough.

“My fear is taking them somewhere that is going to expose them,” Horton said. “This is a senior population. It’s not gonna take but one person, and it’s gonna spread. I’ve been doing this for 20 years. This is really tough. No one is seeing their family, you can’t vote. It’s beyond something I ever thought I’d witness.”

This spring, a friend of Margaret Hutchins at the local League of Women Voters chapter asked her if Walter would be interested in joining a lawsuit challenging North Carolina’s vote by mail restrictions and ballot accessibility laws. “I thought that he’d be willing, and that I better call him and ask him,” Margaret said.

Hutchins agreed. He signed up as a plaintiff, along with the league; Democracy North Carolina, a nonpartisan nonprofit; and several voters who were either elderly, disabled or at high risk of contracting COVID-19. Hutchins was the only plaintiff confined to a nursing home.

Walter and Margaret’s son, Jim Hutchins, 54, a correctional officer in Idaho, said he wasn’t surprised that his dad got involved in the case. Walter was “always very active in exercising his rights,” Jim said. “Dad was a lifelong Republican. Mom was a Democrat, so they always canceled each other out.” Today, Walter and Margaret are registered Independents; they declined to say whom they would support in November.

In the suit, Hutchins’ lawyers argued that the state was violating his rights by barring staff from helping him with his ballot. The case also sought broader changes to make voting easier in North Carolina.

Conservative legal groups intervened to oppose the lawsuit. Committees for the Republican Senatorial and Congressional campaigns filed motions in the case, arguing that election rules, including the staff prohibition, should not be changed. The Public Interest Legal Foundation, a right-wing think tank that has long pushed exaggerated claims of voter fraud, filed an amicus brief for the defense, asking the court to consider its research on inaccuracies in the state’s voter rolls.

The state and county boards contended that Hutchins had not yet been deprived of the right to vote. His facility, for example, might not be locked down by the election. They also argued that MATs could help Hutchins with his ballot, though the state had not yet released its guidance.

Emails submitted as evidence in the case, though, showed that Hutchins and other nursing home residents might not be able to rely on MAT, and that at least two counties did not have teams. “It may be difficult to find a team of bipartisan volunteers to serve, and the MAT program has no funding allocated to it by the legislature,” Katelyn Love, the North Carolina Board of Elections’ general counsel, had written to a disability rights group. “If a MAT team is unavailable, another person may assist a voter in a nursing home or other facility provided that the person is not disqualified. Nursing home owners, managers, and employees, may not assist.”

Hilary Harris Klein, a lawyer for Hutchins at the Southern Coalition for Social Justice, told ProPublica that the law prohibiting employee assistance trampled Hutchins’ rights. “He trusts these people and wants them to help,” she said. “The government is denying his choice by enforcing this ban on staff assistance.”

In August, a federal judge in Greensboro, North Carolina, found that the state had violated Hutchins’ rights, but only his. Staff at Davis Community could help Hutchins with his ballot, but no one else there or in the rest of the state could receive assistance from nursing home workers.

Which is to say, Walter Hutchins won a remarkable legal victory that was also remarkably limited.

The North Carolina Board of Elections declined to comment on the lawsuit. But Patrick Gannon, a public information officer for the board, said that in March the board “recommended that the prohibition on facility employees be temporarily lifted during the pandemic.” North Carolina’s Republican-dominated legislature declined to lift the ban.

Gannon also said that this summer, for the first time, state funding had been allocated to help recruit and train MAT teams. In a March letter to the governor and state legislators, Karen Brinson Bell, the board’s executive director, noted that MAT teams may not be able to reach some facilities.

Davis Community did not respond to multiple requests for comment, including how it will help Hutchins vote in his 18th consecutive presidential election.

Klein said she was disappointed by the narrow ruling. “The court acknowledges that a lot of people are in this situation. So we would have hoped that it would have applied to more people, but that doesn’t mean the state can’t do anything about this.” Calling the judge’s decision “clearly erroneous” and arguing that it will lead to “manifest injustice,” Hutchins’ lawyers filed a motion this month asking the court to let all North Carolina nursing home residents who need assistance with their ballots get help from facility staff.

For Walter, the decision was a welcome, if limited, victory. “I’m a very patriotic guy,” he said in an email. “I love this country. And the right to vote is a very important thing to me. I’m very, very pleased to have participated in this lawsuit. But there are others who are in nursing homes in North Carolina who need help in voting too. They should be able to have nursing staff help them as well.”

Aging in place helps you to avoid a retirement community or nursing home

By Senior housingNo Comments

“I’d like to move to a nursing home or assisted living,” said no older adult ever. In fact, a recent study by AARP found that nine of 10 older Americans preferred to live in their homes as long as possible. The aging-in-place movement seeks to let seniors do just that, avoiding heading to a retirement community or skilled nursing facility for as long as possible — or forever. But staying put requires planning, and the sooner you start, the more prepared you’ll be, whether you remain spry until 103.

There’s lots to do. You might start by remodeling or retrofitting your home to suit senior-specific issues such as decreased mobility or impaired eyesight (think improved lighting or replacing a bathtub with a walk-in shower). That’s what Arlington’s 78-year-old Stephen Grant did two years ago, adding a first-floor bedroom and bathroom and an outdoor ramp onto his Lyon Park bungalow. The interior spaces boast wider doorways (the better to potentially accommodate a wheelchair or walker), the bathroom has tricked-out grab bars and an easy-access shower. “I have some neuropathy issues, which means I’ll probably have an increasingly difficult time moving around in a few years,” he says. “I thought it was better to do this before it became a necessity. It’s given me a great sense of security.”

What Grant and others are buying into is also called universal design, meaning building or remodeling to accommodate all ages and abilities. It can usually be implemented or planned by builders or contractors who are Certified Aging in Place Specialist (CAPS), an educational designation offered by the National Association of Home Builders. “And it’s definitely more expensive to retrofit an existing property, though, so it’s helpful to think about doing things like an open shower or first-floor bedroom before you need them,” says CAPS-certified Clifton, Va., builder Vince Butler.

And even if you can’t do a major renovation or addition, simple changes like installing shower grab bars or amping up interior and exterior lighting can help ward off falls and other accidents. Both and AARP’s HomeFit Guide include room-by-room suggestions for making your home more appropriate for aging in place. Advice includes using floating vanity sinks in bathrooms (easier for someone in a wheelchair to use) and securing throw rugs to the floor with special two-sided tape to prevent slips. Checkbook’s aging-in-place advice is part of our ongoing series on issues affecting older adults that include estate planning and assisted living. You can read more (and more about Checkbook’s nonprofit, non-biased mission to help consumers) at

And for day-to-day needs, from laundry to transportation, you can get assistance from an elder village, an affordable social/medical network linking seniors with volunteers. The movement started in Boston’s Beacon Hill neighborhood in 2001, when a handful of older residents, concerned about staying in their homes as they aged, formed the country’s first village, a volunteer neighborhood group designed to provide social connections and practical assistance. The idea spread across the country, and there are now about 200 of these villages in the United States, with dozens more in development. For Checkbook’s database of existing villages, see Until Aug. 1, Washington Post readers have free access to Checkbook’s full aging-in-place report at

Villages operate under different models. Some are small and staffed by volunteers, who help with tasks like rides to doctor’s appointments, tree trimming and light chores. Others have paid stuff and include extensive social and wellness programming (French conversation classes, walking groups). Most villages charge small membership fees. All villages connect older adults to their neighbors and communities. “It’s a concept that’s really combating isolation,” says Barbara Hughes Sullivan, executive director of the Village to Village Network. “Villages get people out, even if it’s just to the grocery store.” also provides a directory of health agencies, resources for financial assistance, elder abuse prevention and legal help. It lists geriatric-care managers, consultants you can hire to help with planning, recruiting, supervision, and followup should you or a loved one need additional help staying in your home. It’s also a smart idea to contact local and national aging councils to learn about programs they offer. They can tell you whether you or a relative might be eligible for government benefits or assistance, and can usually help you with information on meal delivery, senior centers, low-cost in-home assistance, and help you navigate Medicare, Medicaid and other programs.

Since many seniors live by themselves, joining villages, taking yoga classes at the local rec center, or even getting a roommate can combat loneliness and keep them feeling connected and emotionally healthy. There are even online resources like the Elder Orphans Facebook Group and the Virtual Senior Center offering support and chat rooms.

Grant joined the Arlington Neighborhood Village a few years back seeking remodeling advice as well as rides to the doctor after an eye procedure. He’s driving again now, but village activities like potlucks and day trips keep him looped in.

And there are a range of other resources that can help you stay Chez You without endangering your physical or mental health. Besides the community-based food delivery from Meals on Wheels, you can get restaurant food or groceries zapped to your place by an ever-changing roster of services such as Uber Eats, Caviar and Peapod. Meal prep companies — Blue Apron, Hello Fresh and others — make it easier to put chow on the table without venturing out to the grocery store.

Today’s active-adult communities are stepping up their games

Because many seniors must give up their cars, public transit, ride-sharing and taxis become vital for getting around. Those with smartphones can use ride-hailing apps Lyft and Uber for offer convenient and inexpensive transportation. And there are free or subsidized public transportation passes for seniors, plus ride services to help fulfill medical appointments and other basic needs. In the Washington area, residents age 65 and older are eligible for Metrorail and bus discounts; they simply purchase a Senior SmarTrip card to ride Metro for half off peak fares or the bus for $1 a trip.

“There’s been a revolution in aging,” Sullivan says. “It used to be you grew old and moved into a retirement community or a nursing home. But people are staying in their homes and looking for more quality of life as they get older. They want choices.”

States Seek Nursing Home Alternatives

By Senior housingNo Comments

As Congress contemplates deep cuts in Medicaid, many states have come up with innovative ways to help elders remain at home during their twilight years, saving millions that otherwise would be spent on costly nursing home stays.

Medicaid — the federal program that provides medical assistance for poor and handicapped citizens — is biased in favor of institutional care. When seniors qualify financially and are deemed to require care, Medicaid funding for a nursing home bed is guaranteed. But if qualifying seniors want to receive care at home, they must request funding and wait for services to become available.

Institutional care is an entitlement under Medicaid; community-based care is optional. But it’s an option that experts say most people prefer. And it’s much cheaper. On average, community-based long-term care is about one-third the cost of comparable nursing home care.

Vermont is a leader in a nationwide effort to give elderly consumers the kind of care they want by balancing Medicaid spending between nursing homes and community services, based on consumer demand.

Joan Senecal, Vermont’s deputy commissioner for aging and independent living, says the state already is helping more than three times the number of seniors it was able to serve before federal officials agreed to remove onerous barriers to providing home-care options.
Two-thirds of nursing home patients are fully supported by Medicaid, with the remainder using personal money, private insurance and other funds to pay their bills.  The federal Medicare program for those over age 65 can be used to pay for drugs, doctor and hospital visits and some home medical services, but not nursing home stays.
In the mid-1970s, the federal government began loosening Medicaid rules to make it easier for states to shift spending to community services for the elderly. But many states were stymied by federal requirements that nursing home expenditures be cut before investments could be made in community services, such as assisted-living facilities, special transportation, home-health care and food services.
Oregon and Washington received special permission to invest Medicaid dollars in community-based long-term care in the late 1980s, and today their community programs are among the most developed in the country, with more than half of Medicaid expenditures going to community and home services.
Several other states have received community-care waivers since then, and many have made legislative commitments to developing alternatives to nursing home care.
But it’s not easy to make the transition, says Donna Folkemer, long-term-care policy expert with the National Conference of State Legislatures. “States have been working on the problem for a long time. What states have to do is reduce the institutional bed supply at the same time they create new home-care slots,” she explained.
Once community facilities are set up, states must work with elderly patients to coordinate their services and fill out reams of Medicaid forms to apply for funding. If home care isn’t arranged quickly enough, patients discharged from hospitals are immediately admitted to nursing homes, where Medicaid payment is guaranteed. More than half of nursing home patients come directly from hospitals.
Vermont received a first-of-a-kind exemption — or waiver — from Medicaid rules this year, allowing the aging department to pool funds for nursing home and community care, effectively eliminating the federal program’s bias toward nursing home care. It is the first program to allow elders, families and state caseworkers — not Medicaid regulations — to determine where a patient will receive care.
“Vermont has been able to say only those with the highest level of need are entitled to a nursing home and those with more moderate needs can opt for community care,” explained Susan Reinhard of Rutgers Center for State Health Policy.  The program allows the state to reach out to more seniors and provide preventative care that will keep them out of nursing homes, she said  “Lots of states are waiting in line to see if they can do the same thing,” according to Reinhard.
Through its program — Choice for Care  — Vermont has established a team of 12 nurses across the state to work with candidates for long-term Medicaid assistance. When elderly people become too frail to live on their own or are admitted to a hospital, nurses visit to determine the level of care needed and the preferences of the patients. Once a decision is made, patients either enter nursing homes or work with state caseworkers to arrange needed home services.
Sometimes it’s as simple as building a ramp and purchasing a wheelchair. Often it means providing funds so patients can hire caregivers, usually friends or family members, to help them maintain their daily lives.
“We knew we couldn’t make the waiver program work unless we had the staff in the field. We needed to know what their needs were so we wouldn’t overspend [on nursing homes],” Senecal said.  Vermont’s waiver requires the state to spend no more on its new program than it was spending under the old rules. The total long-term-care budget must follow the same trajectory — about 7.28 percent increase per year — that it followed over the last five years.
Other states want to move in the same direction. Kentucky’s aging authority has filed for a waiver similar to Vermont’s, and Georgia is expected to file for one soon.  Pennsylvania — with one of the biggest elder populations in the country and a large, established nursing home industry — also is considering a Vermont-style waiver.
Medicaid is the largest source of financing for long-term care for the elderly, accounting for about 30 percent of the nation’s spending on nursing homes. State Medicaid agencies allocate one-third of their budgets for long-term-care services, according to research by the federal Centers for Medicare & Medicaid Services (CMS).
Medicaid payments for nursing homes totaled $46.5 billion in 2004, and payments for home and community-based services totaled $15.9 billion in 2003, according to the most recent data available from the CMS.  Nursing homes receive more than 65 percent of their revenue from government sources.
With Medicaid expenditures amounting to some 20 percent of state budgets, solutions to expanding long-term care costs remain a top priority.
Pennsylvania’s aging department secretary, Nora Dowd Eisenhower, says consumer demand and budget realities are propelling the states’ shift to community-based long-term care.
“The boomers are aging. They’re sophisticated consumers that want to change the way long-term care is delivered. Governors across the country are challenged to come up with strategies for controlling the mounting fiscal burden of long-term care.  It’s going to happen,” Eisenhower said.

It’s Time to Abolish Nursing Homes

By Senior housingNo Comments

Albert P. died alone in a nursing home from Covid-19. because of new safety regulations, his daughter, Gita, was not allowed to visit. In the days before his death, she told me, the nursing home staffers “spoke to my mom at length about how great my dad was doing…. [They] said, ‘He’s eating. He’s drinking water. He’s smiling. He’s doing really well.’

Gita wasn’t so sure. She said there were previous issues with her father’s care: hours spent sitting in soiled bedsheets, medication mismanagement, and missed meals.

On May 6, a staff member called to tell her that Albert, 79, had died. She had never been told that her father was even ill. Then she was asked, “When are you going to come to claim the body?”

Gita remembered hanging up the phone. “I didn’t know what to do.”

Albert’s death was no outlier. More than 40 percent of Covid-19 deaths in the United States—about 62,000 people as of July 30—have been linked to long-term care facilities, according to the Centers for Disease Control and Prevention. About one in 37 nursing home residents have died of Covid-19. New York Governor Andrew Cuomo described the threat of the disease in nursing homes as “fire through dry grass.”

The rapid spread of infection in nursing homes isn’t new. Before the pandemic, 82 percent of nursing homes had citations for failure to adequately prevent or control the spread of infection; about half had multiple citations. Opportunistic infections by pathogens like Clostridium difficile thrive in nursing homes, and those usually caused by neglect, like sepsis and urinary tract infections, are prevalent. Covid-19 just spreads more easily and does its deadly work faster.

In New York magazine, music and architecture critic Justin Davidson recently imagined what it would take to build better nursing homes in the wake of Covid-19. Perhaps if we had smaller facilities or installed wet bars, people would like them better. He emphasized the need for more funding. But the problem with nursing homes is not that they need wood floors instead of vinyl or that food is served on plastic trays. The problem is that they are total institutions: secluded facilities where staffs tightly control the lives of vulnerable people.

There is some debate over the origin of the total institution as a concept, but it is usually credited to the sociologist Erving Goffman. In his 1961 book Asylums, he described total institutions as “an assault on the self.” In a nursing home, patients depend on and are at the mercy of the staff. Patients do not choose with whom they live or what activities they can do on a given day. It is, he wrote, entirely opposed to the way normal society functions.

Nursing homes allow for an economy of scale. Feeding, washing, and otherwise seeing to the needs of elderly and disabled residents all at once is more efficient than addressing those needs on an individual basis. But this efficiency comes at the expense of human dignity. Ari Ne’eman, a senior research associate at the Harvard Law School Project on Disability, points out, “From Grandpa Simpson to Junior Soprano, popular culture constantly acknowledges our society’s worst-kept secret: Nursing homes are awful places to live. Unfortunately, we’ve set up our health care and human services systems to send vast numbers of seniors and people with disabilities there anyway.”

That leaves us with a few basic questions: Why do nursing homes exist? How have they so thoroughly embedded themselves in the American life cycle? And what can we do instead?

Nursing homes are relatively new. Before the 20th century, all kinds of care—elder care and even surgery—were performed at home. The wealthy could hire servants to tend to the needs of their elderly relatives. Among those less well-off, women were expected to take on the bulk of the caregiving, uncompensated. And for those who were poor and without families capable of caring for them, there were almshouses.

Almshouses sheltered the “undeserving” poor: the disabled, the ill, children born out of wedlock, widows, and elderly people in poverty. Poorhouses were, for the most part, dilapidated and dirty and were seen as a last resort for human refuse. On Blackwell’s Island, now Roosevelt Island, in New York City hundreds of beds were squeezed so tightly together that the residents had difficulty getting in and out of them, according to Thomas Cole’s The Journey of Life: A Cultural History of Aging in America.

By the early 20th century, more specialized institutions opened to address the disparate needs of people who had relied on almshouses. These included schools for the blind and the deaf, orphanages, mental asylums, and homes for wounded veterans. As a result, the percentage of people in almshouses who were elderly soared. In 1880 about a third of almshouse residents were elderly; by 1923, that share of residents had doubled. In 1903 the New York City commissioner of charities announced that the almshouse on Blackwell’s Island would change its name to the Home for the Aged and Infirm.

The Great Depression overwhelmed and ultimately destroyed the almshouse system. Suddenly, millions of Americans were in poverty. This gentled public opinion toward the poor. The public turned against almshouses and embraced cash benefit programs. This shift culminated in the Social Security Act of 1935 and the advent of a federal welfare system. The act was meant to usher in an era in which senior citizens could pay to support themselves in their own homes.

To facilitate this goal, the legislation prohibited the use of federal funds for “an inmate of a public institution,” cutting off support for locally run almshouses. Unfortunately, it did not provide money for home health care or assistance with activities like feeding and washing. Private rest homes for the elderly stepped in to fill the void. Although it was supposed to end institutional care for senior citizens, the Social Security Act only refashioned it.

In 1960 amendments to the act radically increased nursing home funding. Between 1960 and 1965, federal spending on nursing homes ballooned from $47 million to $449 million a year. The advent of Medicaid in 1965 expanded nursing homes even further. Nursing home capacity more than doubled from 1963 to 1973.

Congress amended Medicaid in 1967 to include a definition of a skilled nursing facility and to require 24-hour nursing services and stricter building codes. Many of the smaller, older rest homes were unable to meet these new requirements, so larger, more hospital-like nursing homes took their place. But these more medicalized facilities weren’t much better. In order to turn a profit, many still spent as little as possible on residents. In his 1980 book Unloving Care: The Nursing Home Tragedy, Bruce Vladeck describes post-reform nursing homes “with green meat and maggots in the kitchen, narcotics in unlocked cabinets, and disconnected sprinklers in nonfire-resistant structures.”

In 1981, Congress amended the Social Security Act to allow for home- and community-based services waivers. Before that, seniors and disabled people could get comprehensive long-term care only in institutional settings like nursing homes; if they remained at home and wanted such care, they had to pay for it out of pocket. The new HCBS waivers allowed Medicaid to fund comprehensive care at home.

Even though three out of four people over the age of 50 want to remain in their homes, according to a 2018 AARP survey, the system remains weighted toward nursing homes and other forms of institutional care. Despite scandal after scandal and reform cycle after reform cycle, federal spending on nursing homes was $57 billion in 2016. The American Health Care Association, the largest lobbying group for the industry, spent $3.84 million in 2019 in its push to further loosen safety regulations and reduce the industry’s legal liability. And the resulting solution to lawsuits over poor conditions? In July, President Donald Trump announced $5 billion in additional funds.

Technically, all seniors who meet the financial criteria should have access to home care through Medicaid. But despite legal requirements, seniors and families are rarely informed of this option. Jennifer Goldberg, the deputy director of Justice in Aging, pointed out that “far too often, hospitals and nursing homes don’t tell older adults how they can get the care they need in their homes and communities.”

In 2017, when Albert first entered the nursing home, it was meant to be a temporary stay for rehabilitation, with the cost covered by Medicare. He had experienced some kidney trouble. A nursing home, according to Gita, was the only option given.

Initially, Albert seemed to be doing well. But days before he was supposed to be discharged, he contracted a C. difficile infection, which can be deadly and is spread mostly in hospitals and nursing homes. his health declined rapidly. He lost a dangerous amount of weight, and it became clear that he would not be returning home within the time allotted by Medicare. Then he came down with pneumonia. Eventually, he also developed contractures—painful tightening of the tendons and joints from months of disuse. He bounced from nursing home to hospital to nursing home. And at no point, according to his daughter, was his family offered an alternative.

“Had staying at home been an option, I don’t think we would have ever put him in a nursing home,” Gita said.

According to the Kaiser Family Foundation, nearly three-quarters of national long-term services and support spending for seniors goes to institutions like nursing homes. Nursing homes are an entitlement, which means seniors have immediate access to them through Medicaid. Home care, on the other hand, has waiting lists. In 2017 there were 201,000 seniors and adults with physical disabilities waiting for Medicaid-funded home care. Nationally, the average wait for an HCBS waiver is two and a half years.

Why do waiting lists exist for a service delivery model clearly preferred by most Americans? And why wouldn’t case managers tell seniors about all of their options? Nicole Jorwic, the senior director for public policy at the Arc of the United States, a part of the Disability and Aging Collaborative, gave one possible explanation. “If a case manager is talking about discharge options for an individual, [an HCBS waiver] waiting list may last longer than the individual may live,” she said.

Another barrier to the wider adoption of home care in the United States is that nursing home associations and unions lobby against it. The associations’ reasons are self-evident: They are protecting their business interests. Trade unions have historically opposed home care because home care workers are less likely to be unionized. In general, they also have lower pay and less job security. Even with home care workers unionizing in recent years, the pay remains low and the hours long. Most of these workers are immigrants and women of color, and the turnover is immense: Every year, two-thirds of home care workers quit.

In order to expand and improve home care, workers need higher pay, better benefits, and more job security. In short, they need to be treated as the essential workers they are.

Then there are the more literal, physical barriers to home care. Stairs and bathtubs can become unusable for elderly residents. Carpets and coffee tables can be deadly hazards. There is a shortage of accessible housing in America. This problem, at least, has a straightforward solution: Pay to make existing housing accessible. The Community Aging in Place–Advancing Better Living for Elders (CAPABLE) initiative at the John Hopkins School of Nursing piloted a successful home-based intervention a decade ago, and the program has been expanded. A registered nurse, an occupational therapist, and a construction worker meet with a senior at home, evaluate the person’s needs, and renovate the home for accessibility. According to CAPABLE, every $1 spent on the program yields nearly $7 in savings.

But what about seniors with severe disabilities like dementia? Many people think it is impossible for a person with dementia to live safely outside a locked facility. Jorwic, whose organization represents many Americans with significant cognitive disabilities, disputes that.

“When it comes to serving individuals with dementia, it can be really difficult for families, service providers, and staff to see how that person can live outside of a [nursing home], and it is important to note that the same security can be done in a home- and community-based setting,” she said.

The idea that anyone can live independently given the right supports is prevalent in discussions about disability but less common in ones about aging. Appropriate staffing is key: People with more significant disabilities may need more staff to assist them in their everyday lives.

The idea of a greatly expanded home care workforce and widely available individualized care brings up the issue of cost. According to the National Council on Disability, an independent federal agency, home- and community-based services have proved to be significantly less expensive than institutional care in every state that tracks the data. But the current level of home care is not always sufficient to meet an individual’s needs. Costs are held low by Medicaid reimbursement caps, the exploitation of home care workers, and red tape: Navigating Medicaid home and community-based services can be a Kafkaesque nightmare. People sometimes die before they’re able to access adequate care.

Finally, there is the prevailing cultural idea that nursing homes are inevitable: We are born, we work, we retire, we go to a nursing home, we die. But there is nothing inevitable about nursing homes.

Through his work in disability rights, Kelly Buckland, the executive director of the National Council on Independent Living, has been championing ways to end the nursing home model for the past 30 years. Oddly, many people who support community living for younger disabled people still think of nursing homes as necessary for seniors.

“There’s this underlying belief that when you get old, that’s where you go,” Buckland said. “But no one goes to a nursing home because they’re old. They go there because they have a disability.” He and other disability rights advocates envision a world with home care for everyone: no more institutions. To some, it may seem like an absurd dream, but all we need is the political will to make it happen.

It’s Time To Retire Nursing Homes

By Senior housingNo Comments

I read an article recently that dealt with the question of why nursing homes cost so much and the difference between for-profit and not-for-profit nursing homes. This legitimate question had been the basis of solid research by the Michigan Retirement and Disability Research Center at the University of Michigan and financed through a grant from the U.S. Social Security Administration. The article itself was on the “Squared Away Blog,” published by the Center for Retirement Research of Boston College.

I mention all of the above because it seems like an arcane question in a world where we are about ready to bid farewell to the whole concept of a nursing home. Today we have at least three options for those who need some level of care that they cannot provide for themselves: skilled nursing facilities (SNF), nursing homes, and assisted living facilities (AL). Here’s how they differ:

Skilled nursing facilities look a lot like hospitals. They are sometimes referred to as rehabilitation hospitals or acute care facilities. They are very institutional in look and feel and may even be part of a hospital. In addition to meals, SNFs provide medically necessary professional services from nurses, physical and occupational therapists, speech pathologists, and other medically trained personnel. They are staffed 24 hours a day and they have a licensed physician that supervises the care of all residents. They are used not only by older adults, but by people of all ages who have had surgery or are recovering from an accident and need temporary round-the-clock care.

Nursing homes provide a somewhat less institutional feel and cater to those who need a lot of help with the activities of daily living (bathing, dressing, toileting, grooming, eating, mobility) in addition to their meals. They also manage medications, take care of residents’ laundry and transport residents to doctor appointments.

Assisted living facilities cater to residents who need help with some of the activities of daily living (ADLs), provides all meals, helps with transportation, and provide a variety of activities for residents to engage in (exercise, crafts, games, etc.). Argentum, the national association that serves the assisted living industry, describes AL as a “combination housing, personalized support services and health (not medical) care, designed to meet the needs of those who need help with ADLs.

The whole concept of “assisted living” arose in the mid-1980s and took off like a rocket, because it filled a large and obvious need. It was originally conceived as a way of bridging the gap between skilled nursing facilities, with their heavily institutional feel, and recuperating at home with minimal help with ADLs, especially for people who had no one living at home with them. From their inception, assisted living facilities have focused on having a more home-like, non-institutional feel. By the mid-1990s there were hundreds of retirement residences billing themselves as “assisted living.”

Today there are over 28,000 assisted living residences in the U.S. and though they vary quite a bit in what they offer, there can be no doubt that AL has moved well into the territory of the more archaic nursing home and has rendered it redundant. Most AL facilities are bright and colorful, they offer residents many opportunities to carry on their lives as independently as possible. Rather than hospital-like rooms, residents live in individual one-bedroom or studio apartments, have their own bathrooms, take their meals in a dining room where they can sit where they wish and socialize with friends; some even maintain their own vehicles and transport themselves to shopping and appointments when they feel up to it.

My 96-year old cousin is living in AL. She went in at age 89, and was able to manage her own personal hygiene and most other ADLs. However, as she has gotten older, she needs more help and the facility she is in provides it on an a la carte (fee) basis, as she requires it. Today she no longer manages her own medications because she has lost almost all of her eyesight, and she needs help with dressing because of increasingly painful arthritis, but she is still able to transfer herself from walker to bed and from bed to the toilet. She still goes down to the dining room to eat and enjoys chatting with other residents and the staff.  She is a good example of the trajectory of aging most often seen in assisted living communities. When she needs medical care, she is transported to a nearby hospital, then comes home to her apartment in AL to recuperate.

Assisted living has become an industry in and of itself. At senior housing industry conferences, no one talks about nursing homes. They are a relic of another age and it’s time for the term to be retired once and for all.  As for skilled nursing facilities, we should all strive to stay out of them as much as possible. They are not pleasant places to be and cost an alarming amount of money. They are strictly for people who need 24/7 medical care and even at age 100, most people do not need that level of medical care. They need help with ADLs and do just fine with home care or assisted living.