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 #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

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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

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(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

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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

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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.