Digest 2020-2021

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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Beginning with Issue 45, Quotes have been moved to the Quotes page. Funding Opportunities and Webinars also have their own pages.

2021

Starting with the Issue #68 of The Dignity Digest, distribution will occur on Fridays due to changes in the production schedule. Occasionally, a new publication will be distributed tentatively entitled The Spotlight by Dignity Alliance Massachusetts. The Spotlight will focus on topics and issues involving long-term health, services, supports, and care affecting older adults and persons with disabilities.

Issue #70 – Week of December 31, 2021

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Featured News Article – They Were the Pandemic’s Perfect Victims

Pro Publica, December 28, 2021

The pandemic killed so many dialysis patients that their total number shrunk for the first time in nearly half a century. Few people took notice.

In the three decades before the pandemic, the number of Americans with end-stage renal disease had more than quadrupled, from about 180,000 in 1990 to about 810,000 in 2019, according to the United States Renal Data System, a national data registry. About 70% of these patients relied on dialysis in 2019; the other 30% received kidney transplants. . . A rare bright spot was the downturn in the death rate. Although diagnoses have been going up, death rates for patients who are on dialysis have declined since the early 2000s. . . Then COVID-19 struck. Nearly 18,000 more dialysis patients died in 2020 than would have been expected based on previous years. That staggering toll represents an increase of nearly 20% from 2019, when more than 96,000 patients on dialysis died, according to federal data released this month. . . They were COVID-19’s perfect victims. . . Their deaths went largely unnoticed. . . Despite early efforts to mask and isolate patients at dialysis facilities, one study found the rate of COVID-19 hospitalizations of dialysis patients from March to April 2020 was 40 times higher than the general population.

Issue #69 – Week of December 24, 2021

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Featured News Article – How Nursing Homes’ Worst Offenses Are Hidden from the Public

New York Times (free access), December 10, 2021 (updated)

Thousands of problems identified by state inspectors were never publicly disclosed because of a secretive appeals process, a New York Times investigation found.

A New York Times investigation found that at least 2,700 . . . dangerous incidents were also not factored into the rating system run by the federal Centers for Medicare and Medicaid Services, or C.M.S., which is designed to give people reliable information to evaluate the safety and quality of thousands of nursing homes. Many of the incidents were uncovered by state inspectors and verified by their supervisors, but quashed during a secretive appeals process, according to a review of thousands of pages of inspection reports and nursing home appeals, which The Times obtained via public-records requests. Others were omitted from the C.M.S. ratings website because of what regulators describe as a technical glitch.

The Times this year has documented a series of problems with Medicare’s ratings system. Much of the data that powers the system is wrong and often makes nursing homes seem cleaner and safer than they are. The rating system also obscures how many residents are receiving powerful antipsychotic drugs. . . The Times asked public health agencies in all 50 states how often citations were upheld, reduced in severity, or deleted entirely since 2016. Eighteen states provided figures. About 37 percent of the time, the nursing homes succeeded in getting citations removed or reduced in severity.

The success rate varied from state to state. In Massachusetts, 36 percent of the citations that nursing homes appealed ended up being deleted. . . But the appeals process tilts in favor of nursing homes because the facilities are the only ones to make their case; residents and their families are shut out of the process.

Regardless of the reason, visitors to the Care Compare website have no way of knowing if they are getting an incomplete picture of problems at a nursing home. . . The appeals often shed light on serious violations that never made it onto Care Compare. The Times reviewed 76 federal administrative decisions published in 2020 and 2021. Ten violations that were upheld by the court were not posted to the federal website and didn’t affect the homes’ star ratings.

*Boston Globe Magazine, December 17, 2021 (updated)

The Land of the Well (print title)

As our e-mails crisscrossed the Atlantic, he in England, I in Boston, it became harder for me to fully inhabit the land of the well.

And so, when my father — who never got sick — was suddenly diagnosed with terminal acute myeloid leukemia during the pandemic, the two of us launched a bold experiment. We began an epistolary project between two lands, inspired by writer Susan Sontag’s description of how “sooner or later, each of us is obliged, at least for a spell, to identify ourselves as citizens of . . . the kingdom of the sick.” . . .

Soon after his terminal diagnosis, Dad was visited by dear friends who were feeling sorrowful about his approaching departure. He thanked them graciously — but not before adding, with a playful laugh, “But how do you know you won’t die before me?” Throughout the summer, he was admitted to the hospital several times. On a night we thought we might lose him, I sat at my kitchen table in Jamaica Plain, more than 3,000 miles away. . .

We’d have known that before long — tomorrow, or later this year — one of us would need to go to the airport and get on a plane. That’s who we are, those of us who belong to multiple places. But not that night.

*Boston Globe Magazine, November 24, 2021 (updated)

Amazing Grace at 99 (print title)

To us, music says “thank you” best, so Roger played “Amazing Grace” on his saxophone to thank the nurse who gave us our COVID vaccines.

After a Zoom Christmas and Zoom New Year’s Eve, 2021 brought hope and a new vaccine. Health care workers were getting their shots in January. Older people were next. We are older. I am 99 and will turn 100 on December 14. My husband, Roger, is 97, and up until October, we still lived in our own home in Beverly. We were excited about getting the COVID-19 vaccine and getting back to our lives, with family members dropping by. . .

On Wednesday we heard a knock at the door. “Hello,” a nurse greeted us. We rolled up our sleeves and he gave us the shot at long last. We were free. . .

Feeling grateful, Roger said, “I would like to play a song on my saxophone to thank you.” Roger selected his favorite sax and played “Amazing Grace.” The nurse joined in, singing in French, and Kathy chimed in, also in French. It turned out that the nurse had grown up in Paris. We all sang “Amazing Grace” in English the second time. This time Roger put down his saxophone and sang the tenor part. What a special day!

National Institute on Minority Health and Health Disparities, December 22, 2021 (updated)

There has been a disproportionate burden of COVID-19 cases in the U.S. among racial and ethnic minority populations, workers in essential services, people living in poverty or crowded housing, and among those with reduced access to testing or health care. Previous studies assessing increased risk for COVID-19 exposure or incidence have predominantly considered only one point in time. A recent study supported by NIMHD examined COVID-19 risk at the community-level in Massachusetts across multiple timepoints during the pandemic. The study investigators examined whether sociodemographic factors were predictive of changes in COVID-19 cases over time.

The investigators compiled publicly available datasets for 351 towns and cities in Massachusetts across five periods of time from March 2020 to October 2020. They used mixed-effect, adjusted Poisson regression models to identify sociodemographic factors associated with town-level COVID-19 case incidence.

The datasets included:

  • COVID-19 case data from the Massachusetts Department of Public Health.
  • Sociodemographic, occupational, and economic data from the 2014-2018 American Community Survey (ACS).
  • Estimates of the percentage of essential and service workers (i.e., healthcare practitioners, transportation occupation, food preparation) modified from the ACS using a dataset created by the American Civil Liberties Union.
  • Cell phone mobility data to calculate the percentage of residents commuting to work using SafeGraph Social Distancing Metrics.

The investigators reported that one of the strongest predictors of COVID-19 incidence across all timepoints was an increased percentage of town residents classified as essential workers. At the beginning of the pandemic, there was also a positive association between COVID-19 cases and the percentage of residents over 80 years of age, as well as the number of long-term care facility beds. However, the association of incidence with residents over 80 years of age and number of long-term care facility beds decreased over time from the first time point to the last. There was also variable association between COVID-19 cases in cities and towns with higher percentages of residents with no health insurance or with greater population density.

Issue #68 – Week of December 17, 2021

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Featured News Article – As U.S. Nears 800,000 Virus Deaths, 1 of Every 100 Older Americans Has Perished

New York Times (free access), December 13, 2021

As U.S. Nears 800,000 Virus Deaths, 1 of Every 100 Older Americans Has Perished

They are among the most vaccinated groups, but people 65 and older make up about three-quarters of the nation’s coronavirus death toll. . .

Seventy-five percent of people who have died of the virus in the United States — or about 600,000 of the nearly 800,000 who have perished so far — have been 65 or older. One in 100 older Americans has died from the virus. For people younger than 65, that ratio is closer to 1 in 1,400. . . The share of younger people among all virus deaths in the United States increased this year, but, in the last two months, the portion of older people has risen once again, according to data from the Centers for Disease Control and Prevention. More than 1,200 people in the United States are dying from Covid-19 each day, most of them 65 or older. . . Older people are still falling seriously ill in great numbers, particularly if they are unvaccinated, and hospitals in the Midwest, New England and the Southwest have been strained with an influx of patients this month. . . After the first known coronavirus death in the United States in February 2020, the virus’s death toll in this country reached 100,000 people in only three months. The pace of deaths slowed throughout summer 2020, then quickened throughout the fall and winter, and then slowed again this spring and summer. . . These most recent 100,000 deaths, too, have all occurred in less than 11 weeks, a sign that the pace of deaths is moving more quickly once again — faster than at any time other than last winter’s surge. . . By now, Covid-19 has become the third leading cause of death among Americans 65 and older, after heart disease and cancer. It is responsible for about 13 percent of all deaths in that age group since the beginning of 2020, more than diabetes, accidents, Alzheimer’s disease, or dementia. . . Eighteen percent more older people died of all causes in 2020 than would have died in an ordinary year, according to data from the C.D.C. . .

Commonwealth of Massachusetts

Introduction

The COVID Community Impact Survey (CCIS) was conducted to better understand the most pressing health needs facing the Commonwealth due to the pandemic, including the social and economic consequences. Data are available on topics ranging from experiences with COVID-19 to basic needs, access to healthcare, pandemic-related changes in employment, impacts on mental health, substance use, discrimination, intimate partner violence, and more. Findings are also broken down by disability, race, sexual orientation, gender identity, geography, income, education, age, industry/occupation, and many other populations.

Findings

The COVID-19 Community Impact Survey (CCIS) findings were initially released at the February 17, 2021 meeting of the Public Health Council, new findings are updated every month, with the most recent update on Persons with Disabilities, on December 8, 2021.

Topic specific chapter reports and webinars

Each chapter of the CCIS Full Report above is available as a standalone report with an associated pre-recorded webinar. Content is updated monthly.

Available data tables:
  • Access to healthcare
  • Disability spotlight
  • Discrimination and race
    • Part 1 (Introduction to Discrimination & Population Spotlight: Asian Residents)
    • Part 2 (Population Spotlights: Indigenous Residents)
    • Part 3 (Population Spotlights: Latinx Residents)
    • Part 4 (Population Spotlights: Black Residents)
  • Employment
  • Housing security
  • Intimate partner violence
  • Mental health
  • Parents and familiesRisk mitigation (masks, social distancing, etc.) and access to COVID testing
  • Social determinants of health (access to food, medicine, housing, technology, and other social determinants as well as the ability to pay for these basic expenses)
  • Sexual orientation and gender identity
  • Substance useRural communities
  • Caregivers
    • Caregivers of adults with special needs
    • Parents of children & youth with special healthcare needs
  • Youth
    • Part 1: (youth roles and responsibilities in their families, their mental health, and their substance use)
    • Part 2: (youth education and employment)
    • Part 3: (youth safety and healthcare access)
  • Young Parents

LifePath – Produced for LifePath Aging Service Access Point, Greenfield, MA

Aging Populations: Addressing the Workforce Crisis in Home and Community Based Care.

TED Talk, December 15, 2021

By 2100, the UN estimates that the world’s population will grow to just over 11 billion people. Architect Vishaan Chakrabarti wants us to start thinking about how we’ll house all these people — and how new construction can fight climate change rather than make it worse. In this visionary talk, Chakrabarti proposes a “Goldilocks” solution to sustainable housing that exists in the sweet spot between single-family homes and towering skyscrapers.

Health Affairs – December 14, 2021

[T]here are actually more personal care aides in the US than physicians. Together with home health aides and nursing assistants, personal care aides comprise one-fifth of the US health care workforce. These workers provide essential supports to people who face limitations in basic activities such as eating, bathing, and moving around. As the US population ages, the demand for home health and personal care aides is projected to increase by nearly 1.2 million additional jobs by 2030.
Esther Friedman from the University of Michigan joins A Health Podyssey to discuss the changing size in employment in the personal care workforce.
Friedman and colleagues published a paper in the December 2021 edition of Health Affairs investigating state level changes in the nursing home and home care workforce between 2009 and 2020. While almost all states experienced an increase in the overall size of their home care workforce, most saw a decrease in their nursing home workforce relative to the number of people who need these services.

Consumer Voice, November 12, 2021

On November 12, the Centers for Medicare & Medicaid Services (CMS) issued updated Nursing Home Visitation Guidance. Because of the high rates of vaccination among residents and the new vaccine requirement for staff, as well as the reduced number of new COVID-19 cases each week, visitation is now allowed at all times for all residents, this includes indoor visitation.

John A Hartford Foundation, December 15, 2021

Humankind public radio has published the second hour of a radio documentary, “Aging in Community.” The first hour explored age-friendly communities and two new episodes examine the role of family caregivers and direct care workers.

Within a decade, America will be looking different. In addition to other demographic changes, 70 million Baby Boomers are now entering their retirement years. This huge societal change will affect how families provide eldercare, how older Americans access transportation, and whether people can age in their own homes among neighbors they know. These shifts will accelerate a trend that began three decades ago with passage of the Americans with Disabilities Act: local communities are attempting to become more age-friendly.

In Aging in Community, a special project from Humankind public radio, older adults and people working in their communities tell their stories and talk about innovative approaches, such as CAPABLE, operated by Johns Hopkins University, which provides an occupational therapist, a nurse and a handy-worker to modify the homes of older residents to improve safety.

The project is in association with Documentary Educational Resources and WGBH/Boston and supported by The RRF Foundation for Aging, The John A. Hartford Foundation and The Boston Foundation, and by the Humankind Program Fund.

The first hour (episodes 1 and 2) were published in October 2021.

Issue #67 – Week of December 7, 2021

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*Washington Post, December 2, 2021

Months after her brother’s death from covid-19, Jeneffer [Estampador Haynes’] grief still consumed her, keeping her life at a standstill. Her Catholic father consoled himself with the thought of John in heaven. Her mother visited his grave every day. Her sister threw herself into the busyness of raising two kids.

But Jeneffer, 37, remained stuck. “When I lost him, it was like I lost myself,” she said. . . John, 30, had Down syndrome and lived in their parents’ home his entire life. . . She’d taken a four-month leave from her job as an executive assistant to deal with her pain and suicidal thoughts. She’d sought medical help and joined daily group therapy. She’d volunteered for several covid support groups. . . “I don’t know if I’m ready,” she said, shaking her head. Soon, she knew, she would have no choice.

Terra Nova Films

As it sheds light on the under-studied and under-recognized phenomenon of injurious and deadly resident-to-resident incidents, the film also emphasizes the need to understand that behavioral expressions labelled as “aggressive” in the context of dementia, typically occur when the “fighting” resident’s own emotional and physical needs are not being met.

Fighting for Dignity provides a much-needed framework in which to:

  1. recognize the potential consequences of serious incidents on residents (psychological distress, falls, physical injury, and death), and the profound emotional impact on their family members,
  2. improve the safety of vulnerable and frail elders by recognizing the emotional cues and situational frustrations that can help prevent harmful incidents, and
  3. offer a professional and timely response to harmful incidents, including the provision of adequate emotional support to family members.

The film is accompanied by an informative 76-slide PowerPoint that identifies:

  • Unmet human needs that often underscore behavioral expressions in persons living with dementia
  • The definition and prevalence of Distressing and Harmful Resident-to-Resident Interactions
  • Contributing factors, causes, and situational triggers
  • The effect of these episodes on residents and families
  • Persistent barriers for change in addressing these episodes
  • A series of psychosocial strategies for prevention and de-escalation

It also pinpoints the critical role of adequate staffing levels, specialized dementia-specific staff training programs, and the importance of personally meaningful engagement of residents living with dementia. Finally, it describes screening and assessment instruments that should be used as an integral part of all prevention efforts aimed at reducing these incidents and keeping residents with dementia safe.

On the Media, December 3, 2021

Almost 800,000 dead in the United States. That’s the latest COVID figure. Since 2020, we’ve seen a steady trickle of morbid milestones like these in the news. They are one way to measure, and try to understand, the COVID-19 pandemic. In the world of journalism, death is a metric that’s important. It indicates significance, newsworthiness, and tragedy. But death is also an inevitable part of the human experience. This is a fact that journalist Katie Engelhart highlights in the title of her new book The Inevitable: Dispatches on the Right to Die. Brooke Gladstone spoke to Engelhart about the complicated ethics of physician-assisted deaths and the surprising parameters within which people can end their lives.

Health Affairs, November 29, 2021

A health care leader shares her story of living with major depression and calls for better treatments. Read by author Nora Super, senior director of the Milken Institute Center for the Future of Aging and the executive director of the Milken Institute Alliance to Improve Dementia Care.

“I decided to share my story because I think so many of us who live with depression live in the shadows,” Super says. “We’re afraid to tell our stories because of the tremendous stigma associated with depression and afraid something might happen to our career or our personal lives if others around us know that.”

Issue #66 – Week of November 30, 2021

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Featured Report – Post-Acute Care Shifts Away from Nursing Homes

Leonard Davis Institute of Health Economics

October 27, 2021

In a new study, Rachel Werner and Eric Bressman document unprecedented shifts in post-acute care during the pandemic, with significant and sustained declines in the number of hospitalized patients being discharged to skilled nursing facilities (SNFs). As a result, SNFs took a significant financial hit, as total payments to SNFs decreased to less than half of their pre-pandemic levels, from an average of $42 million per month in 2019 to $19 million in October 2020.

While health care utilization dropped across the board in the early days of the pandemic, the decline seen in SNFs is unique in that it has not rebounded. The consequences for the nursing home industry could be dire if these trends continue. Post-acute care admissions represent a small percentage of all nursing home admissions, but account for a major source of revenue for nursing homes that nursing homes rely on to stay afloat. Daily reimbursements for post-acute care (covered by Medicare) are considerably higher than the daily rate for long-term care stays (often covered by Medicaid).

Werner and Bressman used a multi-payer database that included more than 975,000 hospital discharges for patients who were 65 years or older. They found that post-acute care use declined in all settings early in the pandemic, including the three most common sites of post-acute care (home with home health care, SNFs and inpatient rehabilitation facilities). However, while the use of home health care and inpatient rehabilitation rebounded quickly, the use of SNFs did not. The percentage of patients discharged to SNF had the steepest decline, from an average of 19% of discharges in 2019 to 14% in October 2020.

The authors note that the shift away from institutional post-acute care began before the pandemic, as Medicare and other payers targeted the high use and cost of these facilities. This has put the squeeze on a critical part of nursing homes’ revenue. Medicare payment for post-acute care services is an important source of nursing home revenue and is often used to cross-subsidize care for long-stay residents with inadequate payment from Medicaid. And, at the same time, occupancy rates have declined for long-stay nursing home residents, as states have shifted Medicaid-funded care out of nursing homes and into people’s homes. The pandemic accelerated these trends, potentially undermining the fragile fiscal health of the nursing home industry.

Because of declining admission and occupancy rates for both post-acute and long-term care, one industry analysis concludes that nursing homes could lose $94 billion over the course of the pandemic, and that 2,000 of them could close without financial assistance. A large influx of public funds during the pandemic has cushioned the immediate blow. But, if admission rates to SNFs don’t rebound, the long-term outlook for nursing homes may be bleak.

We don’t yet know whether these trends will continue beyond the pandemic, and the full implications for patients and families if post-acute care continues to shift to home, as unpaid caregivers may have to absorb the care that was once provided by Medicare-paid providers. But the impact on the nursing home industry is likely to be large and disruptive, with almost certain nursing home closures.

In a Health Affairs blog post last year, Werner and co-author Courtney Harold Van Houtven noted the need to rethink post-hospital care at home, and to prepare for a future in which more intensive rehabilitative care can be provided at home. They pointed out the need to pay family caregivers and pay health professionals to support caregivers in delivering this care in the home. They concluded:

Covid-19 gives us the opportunity to reimagine what optimal post-hospital care might look like after the pandemic is over, an opportunity we shouldn’t squander. There is a safe alternative to nursing home-based post-acute care, one that is favored by many patients and their families and might even cost us less. We can help people recover at home.

In this reimagined future, we will need to re-evaluate the underlying financing and payment of nursing homes to account for significant reductions in post-acute care. What does this mean for the delivery of long-term care, and the role of nursing homes? We can’t yet know the contours of the change, but it is likely that the nursing home industry is in for a rough ride.

Issue #65 – Week of November 23, 2021

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Issue #64 – Week of November 16, 2021

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Issue #63 – Week of November 9, 2021

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New York Times (free access), November 4, 2021

For many of the most vulnerable people in our society, the pandemic has not let up. More than 186,000 residents and staff members of nursing homes and long-term-care facilities have already died of Covid-19. In March, the Covid Tracking Project estimated that nearly 1 in 10 people who lived in nursing homes in the United States had died of the virus. And a report released by the Kaiser Family Foundation in early October showed that during July and August of 2021, the number of Covid deaths inside nursing homes had started to rise again, reaching its highest level since February.

And yet, these older residents seem to have been tucked back into their facilities and forgotten about by politicians and the media. The lack of political attention is all the more puzzling given how much the nursing home catastrophe was at the center of a high-profile scandal. . .

As private equity firms and corporate chains bought up more and more nursing homes, quality of care had declined across the board, mostly because of the lack of adequate nurse staffing. Nurses were routinely working at several elder-care facilities at once. When the pandemic hit, this lack of staffing led to a variety of nightmare scenarios. Some nurses were left to take care of entire wings of nursing homes by themselves. Other places were so understaffed that they allowed asymptomatic coronavirus-positive nurses to continue to go to work. In other areas, contagious nurses were unwittingly going from nursing home to nursing home, leaving a trail of illness and death, while the country struggled to enact any sort of comprehensive testing. . .

It’s true that outbreaks can happen at even the best-run facilities, but the for-profit industry can almost entirely be blamed for the scope of the American nursing home tragedy. It seems to pay more attention to political lobbying than it does to adequate staffing and care, and the politicians who bend to their will. . .

The business of nursing homes, at least for the time being, seems undiminished. A May article in the Journal of the American Geriatrics Society found that the pandemic had very little effect on the financial well-being of the country’s publicly traded nursing home companies. . .

What is a specific thing you would like to see done in response to the rapid privatization of elder-care facilities? Well, I think of two things. When we go back to the ’70s and ’80s, when we had a crisis like this, we responded by strengthening the rights of nursing home residents and patients. The country in the ’80s passed the Bill of Rights for nursing home residents. In places like New York State, we strengthened that by passing a state Bill of Rights that went even further. We did that because we recognized the state was failing to protect older adults. By giving them the right to recourse, by making it very expensive for the industry to act negligently, we were able to save more older adults. During this pandemic, Governor Cuomo stripped away those rights by granting a near blanket corporate immunity to nursing homes, a law that other states and even the federal government tried to emulate. By taking away rights retroactively, you give the industry a “Get Out of Jail Free” card and disincentivize them from hiring more people and investing in saving people’s lives. . .
So, No. 1, we need to strengthen people’s rights. No. 2, we need a public option: a viable public takeover plan for when the industry and the market are failing, to step in and take back the facilities. In lieu of us having a viable plan, the market and the industry will never fix themselves because there is no competitive model that will push them to do better. We have to put in competitive nursing home and long-term-facility models that can check the privately run industry.

Issue #62 – Week of November 2, 2021

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  • (Video) Massachusetts Coalition for Serious Illness Care – Video updates from our Massachusetts Medical Schools’ Collaborative and Nursing Schools Taskforce – Updates from meetings with medical students about their experiences in serious illness care and surveying nursing schools across the state about their serious illness curriculum. Addressing gaps in training for nurses and doctors brings us one step closer to ensuring that everyone gets care that supports what matters most to them.
  • (Video) Massachusetts Coalition for Serious Illness Care – Videos from the Sixth Annual Summit on Serious Illness Care – October 14, 2021 – More about research findings and nine video segments from the Summit – On October 14, 2021, participants virtually came together reflect on the findings from our latest nationwide research.
    • They also heard updates from the Public Policy Working Group, Medical Schools’ Collaborative, and Nursing Schools Taskforce. Through presentations, discussions and breakouts, participants explored what it means to shift to an equity-first approach in all the work to improve communication and care for people and families facing serious illness.
    • In a Fireside Chat, Andrew Dreyfus (Blue Cross Blue Shield of Massachusetts) and Michael Curry (Massachusetts League of Community Health Centers) addressed the role racism has played in healthcare over the course of American history, starting with slavery, and bringing us to the present day when so many inequities exist, in healthcare, education, housing, and more. While there has been significant work over the last twenty years to address health disparities, Michael and Andrew call for more coordinated efforts to address the roots of systemic racism and improve the social determinants of health for people of color in the United States.
    • Dr. Carine Davila (Massachusetts General Hospital) and Zamawa Arenas (Flowetik) shared findings from the multi-phase, nationwide research study on how people experience the health care system with a particular focus on experiences of Black and Hispanic adults, people with serious illnesses and disabilities, and their caregivers.
    • Also heard were reflections from Coalition Co-Chairs Dr. Atul Gawande and Maureen Bisognano on how the research directs the Coalition’s efforts going forward.

Issue #61 – Week of October 26, 2021

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  • (Essay) New York Times (free access) – Helen Keller and the Problem of ‘Inspiration Porn’ – October 10, 2021 – [Dr. M. Leona Godin,  a writer, performer and educator and the author of “There Plant Eyes: A Personal and Cultural History of Blindness.”] see[s Helen} Keller’s mainstream image and story as a textbook example of “inspiration porn,” where disabled people’s lives are flattened into saccharine narratives about overcoming adversity, usually designed to make nondisabled people feel uplifted and grateful. . . In “The Radical Lives of Helen Keller” I found a new sort of narrative, and it was a revelation. I learned about Keller’s expansive and often controversial work to promote human rights — for women, for workers, for people of color. I learned that in her long life (1880-1968) she was a socialist, a suffragist and a founding member of the American Civil Liberties Union. And of special interest to me as an artist, I learned that Keller and her teacher, Anne Sullivan, performed on the vaudeville circuit from 1920 to 1924. I would take that delicious tidbit — which some of her friends called a “deplorable theatrical exhibition”— and spin it into a one-woman show, “The Star of Happiness,” a move that shifted the direction of my life into the arts. . . How can we move our understanding of disability forward by telling and retelling the story of this one amazing but decades-gone figure? Today’s disabled artists, writers and activists are responding to a world entirely changed since Keller gave her last speech in 1961. Yet, with some exceptions, our mainstream conversations about disability have stagnated. . . The extremes of disabled representation that we usually find in mainstream media — superhuman disabled people on the one hand, pitiful creatures in need of a cure on the other — are created, almost exclusively, by nondisabled people for nondisabled people. This perhaps explains why they are so redundant and out of touch with our experience. It would be laughable if those images did not translate directly into discrimination in the workplace, in the medical establishment, in our creative institutions. I and other blind writers experience this in both obvious and subtle ways. For instance, we often hear from editors and other decision makers, “Oh, we like this work, but we just published a blind author.” Culturally speaking, it reinforces the idea that we can have only one blind person at a time in the room.
  • (Essay) New York Times (free access) – Don’t Fear a Future with More Deaf People – October 10, 2021 – [W]hat if the population of deaf and hard-of-hearing people were to grow?
    • In March 2021, the World Health Organization released a report predicting that unless measures like increased access to health care and noise protection are enacted, 2.5 billion people worldwide, or one in four people on Earth, will have some degree of hearing loss by 2050. Nearly 700 million of them will experience hearing loss ranging from moderate to profound, a 63 percent increase from today’s numbers…
    • An uptick in global noise pollution and unsafe listening practices, childhood disease resurgences because of vaccine hesitancy or limited international availability, the use of ototoxic antibiotics and a lack of preventive ear and hearing care and hearing care specialists worldwide are some of the main causes of hearing loss cited in the W.H.O.’s report. . .
    • Today’s world isn’t ready for a deaf future, but it can be. Rather than an approach that’s reactive and narrow — like CRISPR-editing hereditary deaf people out of the genome, or heaping on retroactive accommodations designed to maintain the status quo — we can take a proactive, cultural approach that incorporates universal design, dismantles structural barriers and includes deaf people from the ground up. . .
    • Closed captioning is an inexpensive and widely available technology. Since listening and speech-reading is largely dependent on context and atmospheric conditions — for example, whether there is background noise — even those of the projected 2.5 billion people experiencing mild degrees of hearing loss are likely to benefit from captioned material. . . If captions were simply played on the big screen, everyone could enjoy the film together.
  • (Essay) *Washington Post – The special torment of mysterious chronic illness – October 25, 2021 – by Megan McArdle, a Washington Post columnist and the author of “The Up Side of Down: Why Failing Well Is the Key to Success.” It is bad enough to be sick, but worse still to stay that way for months and years on end. And some of the worst agony is reserved for the people with mystery ailments — or those who believe themselves to be suffering from a disease such as chronic Lyme, which most doctors doubt exists.
  • (Essay) New York Times (free access) – How I Became a Sick Person – October 23, 2021 -by Russ Douthat, New York Times columnist and author of “The Deep Places: A Memoir of Illness and Discovery.” The long-term form of Covid-19 has something in common with other forms of chronic illness — strange and varied symptoms, lasting debilitation, no certain treatment. But unlike other such conditions, which tend to creep up on society, long-haul Covid arrived suddenly, creating a large pool of sufferers in a short period of time and afflicting frontline medical workers and younger patients in large numbers.
  • (Inspiration) Today with Hoda & Jenna (video) – How a 79-year-old Navy veteran became a TikTok sensation – October 21, 2021 – Kenny Jary is a 79-year-old veteran whose scooter broke and TikTok users raised over $100,000 for buy him a new one. As Jary’s following has grown to over 1 million and donations keep pouring in, he pays it forward by buying scooters for fellow veterans.
  • (Report) Federal Trade Commission – FTC Issues Annual Report to Congress on Protecting Older Adults – October 18, 2021 – The report, Protecting Older Consumers, 2020-2021, A Report of the Federal Trade Commission, also includes information on the FTC’s efforts to protect older consumers through law enforcement actions and outreach and education programs. This year’s report calls particular attention to the Commission’s work to combat scams related to the COVID-19 pandemic. Report note Reports of online shopping fraud increased sharply among adults aged 60 and higher in the second quarter of 2020 as online marketers failed to deliver masks and other scarce items needed during the COVID-19 pandemic. The most frequent type of fraud reported by older adults was online shopping scams. Overall, reports of losses to online shopping fraud by older adults more than doubled in 2020, and the numbers continued to be far higher than pre-pandemic levels in the first half of 2021.s jump in online shopping fraud reports since start of COVID-19 pandemic.
  • (Report) ASPE Office of Health Policy – Associations Between County-level Vaccination Rates and COVID-19 Outcomes Among  Medicare Beneficiaries – October 5, 2021 – Analysis of Medicare data and county vaccination rates indicates that COVID-19 vaccinations from January until May 2021 were associated with estimated reductions of approximately 265,000 COVID-19 infections and 39,000 deaths among Medicare beneficiaries. Key Points:
    • COVID-19 vaccines are a key component in controlling the COVID-19 pandemic. Clinical data show vaccines are highly effective in preventing COVID-19 infections and severe outcomes including hospitalization and death.
    • In this analysis of individual-level health data and county-level vaccination rates, we find that higher county vaccination rates were associated with significant reductions in the odds of COVID-19 infection, hospitalization, and death among Medicare fee-for-service (FFS) beneficiaries between January and May 2021.
    • Comparing the rates of these outcomes to what our model predicts would have happened without any vaccinations, we estimate COVID-19 vaccinations were linked to estimated reductions of approximately 107,000 infections, 43,000 hospitalizations, and 16,000 deaths in our study sample of 25.3 million beneficiaries. These estimates correspond to estimated reductions of approximately 265,000 infections, 107,000 hospitalizations, and 39,000 deaths for the full Medicare population of 62.7 million people.
    • After accounting for the potential underreporting of COVID-19 deaths in Medicare FFS claims data, and considering alternative models, the number of deaths prevented among the full Medicare population could plausibly range from 12,000 to 49,000 deaths.
    • Reductions in cumulative weekly deaths were found nationally, for all racial and ethnic groups, and across all 48 states included in our sample.
    • The difference in vaccination rates for those age 65 and older between the lowest (34%) and highest (85%) counties and states by the end of May highlights the continued opportunity to leverage COVID-19 vaccinations
  • (Report) Administration of Community Living – Adult Maltreatment Report 2020 – October 2021 – ACL released a report on the fifth year of data collected by the National Adult Maltreatment Reporting System (NAMRS). NAMRS is the only comprehensive national initiative compiling data on the abuse, neglect, and exploitation of older adults and adults with disabilities as reported to state adult protective services (APS).
    • NAMRS collects quantitative and qualitative data on state APS practices and policies, and the results of investigations into the maltreatment of older adults and adults with disabilities. The report includes data on complaints received by APS, types of allegations, outcomes of investigations, characteristics of alleged victims and perpetrators, and more.
    • In the 2020 reporting year, APS programs received more than 1.3 million complaints of alleged adult maltreatment, a slight decrease compared to the previous year, potentially attributable to the COVID-19 pandemic.
    • The year five report includes data from every state and territorial Adult Protective Services system in the nation. This wide-spread voluntary participation reflects the value that leaders in the field see in collecting national data on adult maltreatment. The quantity and consistency of data submissions to NAMRS continues to improve with each passing year.
    • Understanding the nature and extent of adult maltreatment—and the ways APS programs respond to it—is critical to enhancing the effectiveness of APS programs. NAMRS has sparked significant improvements in APS data collection and submission, and subsequently in the understanding of adult maltreatment.
    • In this year’s report, the APS TARC (Adult Protective Services Technical Assistance Resource Center) began to look at the potential impact of the COVID-19 on adult maltreatment as reported to state APS programs. This analysis is preliminary and will be expanded next year once the 2021 data collection cycle is completed. 
    • State APS systems investigate reports of abuse and exploitation of older adults and people with disabilities. They provide support and case-management, and connect people facing abuse to a variety of protective, emergency, and support services. NAMRS is one of many ACL initiatives to build public and professional understanding about adult maltreatment and strengthen social supports to prevent it. Learn more about the National Adult Maltreatment Reporting System (NAMRS).
  • (Article) BMJ Quality & Safety – Filling a gap in safety metrics: development of a patient- centred framework to identify and categorise patient- reported breakdowns related to the diagnostic process in ambulatory care – October 16, 2021 – [Note:  Sandy Novack, a Dignity Alliance Massachusetts member and contributor to The Tuesday Digest, is a co-author.]
    • Background Patients and families are important contributors to the diagnostic team, but their perspectives are not reflected in current diagnostic measures. Patients/families can identify some breakdowns in the diagnostic process beyond the clinician’s view. We aimed to develop a framework with patients/families to help organisations identify and categorise patient- reported diagnostic process- related breakdowns (PRDBs) to inform organisational learning.
    • Results The framework describes 7 patient- reported breakdown categories (with 40 subcategories), 19 patient- identified contributing factors and 11 potential patient- reported impacts. Patients identified breakdowns in each step of the diagnostic process, including missing or inaccurate main concerns and symptoms; missing/outdated test results; and communication breakdowns such as not feeling heard or misalignment between patient and provider about symptoms, events, or their significance.

Issue #60 – Week of October 19, 2021

Download the Tuesday Digest 60: DAM Digest 060.docx

  • (Report) The Commonwealth Fun – When Costs Are a Barrier to Getting Health Care: Reports from Older Adults in the United States and Other High-Income Countries – October 1, 2021 – Findings from the 2021 International Health Policy Survey of Older Adults – Abstract:
    • Issue: Unlike older adults in other high-income countries, those in the United States face significant financial barriers to getting health care, despite Medicare’s universal coverage. These barriers may affect use of health services as well as health outcomes.
    • Goal: To compare the out-of-pocket spending and care-seeking experiences of older Americans with those of older adults in 10 other high-income countries.
    • Methods: Analysis of findings from the Commonwealth Fund’s 2021 International Health Policy Survey of Older Adults.
    • Key Findings: One-fifth of older Americans spent more than $2,000 out of pocket on health care in the past year. Only a small share of older adults in most of the other surveyed countries had such high out-of-pocket health costs. Similarly, a higher share of older Americans reported forgoing health care because of costs. Rates of skipping dental care because of costs were similar for older adults in nations that do not offer coverage of such services, including the U.S.
    • Conclusions: Older Americans pay more for health care and are more likely to not get care for cost-related reasons than people in other high-income countries. Affordability remains a concern and should continue to be a focus of research and policy.
  • (Report) The Commonwealth Fund – The Impact of COVID-19 on Older Adults – September  15, 2021 – Findings from the 2021 International Health Policy Survey of Older Adults – Survey Highlights
    • Compared to their counterparts in the other survey countries, older adults in the U.S. have suffered the most economically from the COVID-19 pandemic, with more losing a job or using up all or most of their savings.
    • Latino/Hispanic and Black older adults in the U.S. have been far more likely than white older adults to experience significant negative economic consequences.
    • COVID vaccination rates for older adults were highest in countries where vaccines were most widely available when the survey was fielded. In the United Kingdom, nearly all older adults (97%) had already been vaccinated. The U.S. had the largest percentage of older adults who were not planning to get vaccinated.

Issue #59 – Week of October 12, 2021

Download the Tuesday Digest 59: DAM Digest 059.docx

  • (Essay)The Atlantic – A COVID Serenity Prayer – October 10, 2021 – by Lucy McBride, a practicing internist in Washington, D. C., and author of a COVID-19 newsletter. We need the serenity to accept the things we cannot change, courage to change the things we can, and the wisdom to know the difference.
  • New York Times (free access) – Tallying the Cost of Growing Older – October 5, 2021

    Researchers have been studying how much care American adults will require as they age, and for how long.For years, researchers have tried to calculate what proportion of the aging population will need such extensive care. “Becoming frail and needing help with basic personal care is probably the greatest financial risk people face at older ages,” said Richard Johnson, the economist who directs the Program on Retirement Policy at the Urban Institute. A 2019 study he undertook for the federal Department of Health and Human Services, for example, found that over their lifetimes, about 70 percent of older adults will need help from family caregivers or paid aides or some combination, in their own homes or in long-term care facilities

    “Even if you need a lot of care, if it’s for a short period, it’s not that big a deal,” said Alicia Munnell, an economist and director of the Center for Retirement Research at Boston College. Recent work by Dr. Munnell and her colleagues explored those nuances.

    [The Boston College] team assessed seniors’ lifetime care needs as low, medium, or high intensity, based on how many so-called activities of daily living they needed assistance with. Then the researchers calculated how many older Americans would need help for short (up to a year) or medium durations (one to three years) or for longer than three years. Their results: Seventeen percent of 65-year-olds will need no long-term care. Almost one-quarter will develop severe needs, requiring many hours of help for more than three years. Most older people will fall between those poles, with 22 percent having only minimal needs. The largest group, 38 percent, can expect moderate needs — like support while they recover from a heart attack, after which they can again function independently.

  • Fitchburg Sentinel & Enterprise – Ghost towns: Nursing home staffing falls amid pandemic – October 8, 2021

    Even before COVID-19 bared the truth of a profit driven industry with too few caring for society’s most vulnerable, thin staffing was a hallmark of nursing homes around the country. Now, staffing is even thinner, with about one-third of U.S. nursing homes reporting lower levels of nurses and aides than before the pandemic began ravaging their facilities, an Associated Press analysis of federal data finds.

    As COVID-19 engulfed homes, some workers fled over fears of exposure. Others were lured to easier work at similar or higher pay in restaurants and stores. And some were laid off by homes as occupancy fell. Nursing aides are the backbone of homes’ staffing. They are overwhelmingly female and disproportionately members of minority groups and, working jobs with high injury rates and low pay, the industry has long struggled to hire and retain them.

    Many families of those who have died in nursing homes since COVID-19’s start are convinced their loved ones’ deaths were precipitated or hastened by poor staffing. Linking an individual death to staffing is difficult, but studies have repeatedly linked higher nursing home staffing with better outcomes. For those who remain in nursing homes, the impacts of lower staffing are dovetailing with the pandemic’s toll.

  • (Report) United Nations Human Rights Council – Decade of Healthy Ageing 2020–2030 – October 5, 2021 – This document describes the plan for a Decade of Healthy Ageing 2020–2030, which will consist of 10 years of concerted, catalytic, sustained collaboration. Older people themselves will be at the centre of this plan, which will bring together governments, civil society, international agencies, professionals, academia, the media, and the private sector to improve the lives of older people, their families, and their communities. It is the second action plan of the WHO Global strategy on ageing and health, building on the United Nations Madrid International Plan of Action on Ageing (1) and aligned with the timing of the United Nations Agenda 2030 on Sustainable Development (2) and the Sustainable Development Goals. Areas for Action:
    • Change how we think, feel and act towards age and ageing
    • Ensure that communities foster the abilities of older people
    • Deliver person-centred, integrated care and primary health services responsive to older people
    • Provide access to long-term care for older people who need it

      Read the resolution on Human Rights of Older Persons

Issue #58 – Week of October 5, 2021

Download the Tuesday Digest 58: DAM Digest 058.docx

  • (Essay) New York Times (free access) – What if Disability Rights Were for Everyone? – October 1, 2021 – By Ari Ne’eman who is a doctoral candidate in Health Policy at Harvard and a visiting scholar at the Lurie Institute for Disability Policy at Brandeis. He previously served as executive director of the Autistic Self Advocacy Network and as one of President Barack Obama’s appointees to the National Council on Disability and is currently writing a book on the history of American disability advocacy.

    When the public thinks about disability rights, they usually imagine laws that protect those with visible disabilities — wheelchair users, for instance, or people with Down syndrome. But the scope of disability law is far broader, encompassing less obvious diagnoses. Young people with diabetes, asthma or other conditions that put them at risk from Covid may not think of themselves as people with disabilities — but by legal definition they stand to benefit from disability law’s protections. The disability rights movement emerged to champion the interests of people who had been pushed to the margins of our society, seeking to rectify a long and dark legacy of disabled Americans being forced into institutions, discriminated against in the workplace, and denied access to mainstream schools. For those who experienced such horrors, the movement exists to secure the rights of a specific oppressed minority group.

    Disability rights law goes beyond many other civil rights statutes. The A.D.A. prohibits obvious discrimination, but it also requires reasonable accommodations and modifications — changes to typical policies and practices to give disabled people equal access and opportunity to participate. This is an obvious necessity for people with disabilities, but it also offers an intriguing precedent for the broader public. Covid-19 has illustrated that disability rights are of near-universal relevance. An opportunity is emerging to frame disability advocacy in the language of shared social and economic liberties we should all protect, for reasons of self-interest as much as abstract notions of equity. To accomplish this, activists may need to consider universalizing the disability movement, presenting disability rights as broad protections available to all Americans, not just those who self-identify as disabled.

    One can imagine future disability advocacy proceeding on two tracks. A small vanguard of “loud and proud” activists, motivated by disability culture and the discursive claims of identity politics, can mobilize to secure new laws and public programs. Meanwhile, these initial policy victories will be defended and grown because of their concrete impact on the lives of the far larger group of people who benefit from disability protections even without identity. Reaching the latter group will require activists to highlight “bread and butter” issues the public can easily understand. Keeping students safe from a deadly pandemic, guaranteeing rights to pregnant workers, and helping seniors stay in their own homes all seem like good places to start.

  • (Report) Urban Institute – Strengthening Long-Term Services and Supports: The Difference Federal Investment Can Make – September 27, 2021 – The report finds that generous funding to support policies related to home- and community-based services (HCBS) eligibility, caregiver wages, and services could drastically improve the lives of people in need and the workers who serve them.The Issue: The need for long-term services and supports (LTSS) increases with age and its current approach to financing in the United States leaves people at risk of facing unforeseen challenges and the catastrophic costs of requiring extensive help with daily tasks.

    Key Findings: Researchers compare three options for HCBS investment, finding:

    • Permanently increasing each state’s federal medical assistance percentage by 10 percentage points would increase federal spending by about $104 billion over 8 years. In the first year, this approach could serve as many as 360,000 new beneficiaries, while increasing annual wages by an average of $5,000 for 1.16 million workers.
    • Targeting federal dollars to bring low-spending states’ HCBS spending up to the national median would increase federal Medicaid HCBS spending by a projected $196 billion over eight years and could reach 970,000 more beneficiaries in these states. This option could increase wages by $5,800 per year for 400,000 workers in states with below-median HCBS spending.
    • Providing new federal funding to all states, both lifting low HCBS spending up to the national median and covering all state spending in higher-spending states up to that median, would increase federal costs by an estimated $317 billion over eight years and could reach up to 1,160,000 more beneficiaries across all states. This option could increase annual wages by an average of $5,000 for 1.46 million workers.
  • (Lives well lived) *New York Times – Ruth Sullivan, Advocate for People with Autism, Dies at 97 – September 30, 2021 – After her son was found to be autistic, she started organizations to help children and adults. She also consulted on the making of the movie “Rain Man.”
  • (ARPA funding) *Boston Globe – With redistricting, federal stimulus decisions, and more on the menu, there could be legislative feast before Thanksgiving – October 3, 2021 – House Speaker Ronald Mariano suggested lawmakers could appropriate roughly half of it now, with areas such as housing seeing a significant infusion, according to legislative officials.
  • (Presentation slides and video) Long Term Care Community Coalition – The Hidden Profits Behind Poor Nursing Home Care

Issue #57 – September 28, 2021

Download the Tuesday Digest 57: DAM Digest 057.docx

Issue #56 – September 21, 2021

Download the Tuesday Digest 56: DAM Digest 056.docx

Issue #55 – September 14, 2021

  • New York Times (free access to article) – Phony Diagnoses Hide High Rates of Drugging at Nursing Homes – September 12, 2021 – At least 21 percent of nursing home residents are on antipsychotic drugs, a Times investigation found. The government and the industry are obscuring the true rate of antipsychotic drug use on vulnerable residents. The share of residents with a schizophrenia diagnosis has soared 70 percent since 2012. Today, one in nine residents has received a schizophrenia diagnosis. In the general population, the disorder, which has strong genetic roots, afflicts roughly one in 150 people. For decades, nursing homes have been using drugs to control dementia patients. For nearly as long, there have been calls for reform. False schizophrenia diagnoses are not confined to low-rated homes. In May, the inspector general of the Department of Health and Human Services, for example, identified 52 nursing homes where at least 20 percent of all residents had an unsupported diagnosis. Medicare rated more than half of those homes with at least four of the maximum five stars.
  • New York Times (free access to article) – Home Care Keeps Me Alive. It Should Be Fully Funded. – September 8, 2021 – “I can afford this care only because I forced my health insurance company to pay for most of it and we have some very wealthy friends who cover the rest. Private health insurance rarely covers home care. Neither does Medicare. My team of seven caregivers is skilled, reliable, and very stable. And that is possible only because we pay them well above the low market rates. Without home care, I would have to be in a nursing home to stay alive. And to be honest, I don’t know if that would be a quality of life that I would be willing to tolerate.” [Ady Barkan, a co-founder of Be a Hero, a political advocacy organization fighting for health care justice. He was diagnosed with A.L.S. in 2016]
  • Hidden Brain (Podcast and transcript)- The Ventilator – September 7, 2021 – Many of us believe we know how we’d choose to die. We have a sense of how we’d respond to a diagnosis of an incurable illness. This is the story of one family’s decades-long conversation about dying. What they found is that the people we are when death is far in the distance may not be the people we become when death is near. Stephanie and John Rinka began to consider what it means to save a life at all costs. The questions they were discussing have long occupied patients, families, ethicists, and philosophers. What makes life worth living? Is there a point at which you can be alive but not really alive? Who decides when you reach that point? What if my definition of quality of life is different than yours? [Note: The podcast version is recommended.]
  • Tidsskr Nor Legeforen – Ventilation of patients with amyotrophic lateral sclerosis – May 14, 2021 – [In Norway,] just under 10 % of patients with amyotrophic lateral sclerosis receive life-prolonging ventilation via a tracheostomy. There is no international consensus on the planning of life-prolonging invasive ventilation for patients with this disease. . . . Amyotrophic lateral sclerosis is one of the few diseases in adults where it is possible to prolong the patient’s life after the disease has reached the final stage where it is no longer possible to survive without advanced medical interventions. Ventilation via a tracheostomy is performed in approximately 6 % of ALS patients in Norway. The decision is made by a doctor in consultation with the patient, the patient’s family, and other medical personnel. It is our recommendation that patients and their families are thoroughly briefed on the situation. The patient must be suitable for ventilation in terms of their wishes and cognitive function, the family and primary health service must be able to provide the necessary care and a plan must be in place for when ventilation should be withdrawn.
  • (Video) The Conversation Project – A Soul Doctor and a Jazz Singer – October20, 2014 – Dr. Lachlan Forrow, MD, advisor to The Conversation Project and member of Dignity Alliance Massachusetts, talks about what it means to his patients to have a good day. One terminally ill patient, Dolly Baker, says that for her a good day is one where she is able to sing.

Download the Tuesday Digest 55: DAM Digest 055.docx

Issue #54 – September 7, 2021

  • Vox – The staggering, exhausting, invisible costs of caring for America’s elderly – August 26, 2021- As millions “age in place,” millions more must figure out how to provide their loved ones with increasingly complex care. Excerpts:
    • According to elder care experts, Laura’s description of what happened to her mom is pretty common. As someone ages, their health appears to gradually deteriorate in a way that doesn’t seem alarming. Most of the time, though, they’re inching toward a cliff — and when they fall off, they find themselves on another health cliff, and another, and another. With each cliff, it gets more difficult for a family member to catch them.
    • Depending on your own experience with elder care, Laura’s case might sound extreme. But it isn’t, not really. It’s just that most of this care work — both paid and unpaid — remains invisible. According to the most recent data from the AARP, an estimated 41.8 million people, or 16.8 percent of the population, currently provides care for an adult over 50. That’s up from 34.2 million (14.3 percent) in 2015.
    • A lot of these caregivers are really, really struggling. What’s required of them is more complex and time-consuming than just 10 years ago, as caregivers deal with overlapping diagnoses related to physical health, mental health, and memory loss as the elderly live longer.
    • Since the difficulty of this care remains largely imperceptible to all save those who provide it, there have been few attempts, governmental or otherwise, to make it better, easier, or less of a life-swallowing burden. Right now, there are resources for the poor (who go on Medicaid, the services for which have become harder and harder to access and arrange) and resources for the rich (who can pay for Cadillac versions of care, including consultants to navigate the process). For everyone in between, as Caroline Pearson, senior vice president at the University of Chicago’s NORC (formerly the National Opinion Research Center), put it to me, “There is no system at all.”
    • Our current elder care reality has everything to do with who’s done this labor in the past, paired with an enduring unwillingness to update social policy to match seismic societal shifts. There’s a way to value this work. The first step is seeing it not just as valuable labor but as labor in the first place.
    • Caregiving is work, even if our society has historically concealed that work. For much of the country’s history, the question of who provided long-term care — for young children, for those with disabilities, and for older people — was simple. Women did it for free in the home. The vast majority of men worked outside the home, earning the money that would allow the household to run, and then the women ran it: cooking, cleaning, educating, supervising, bathing, planning, organizing, and just generally doing the labor known as care work. While men’s work outside the home was valorized, women’s work was naturalized: It wasn’t work, it was just what women did.
    • These two currents of labor devaluation — of women’s work and of racialized work — converge in caregiving. The systemic undervaluing of this labor affects those providing unpaid and paid care differently, but the impacts are interlocking. In Forced to Care: Coercion and Caregiving in America, Evelyn Nakano Glenn argues, “By virtue of its location in the home, caring work, whether paid or unpaid, is treated as though it is governed by the altruism and status obligations,” meaning the obligation to care for someone because of your relationship to them (daughter, son, sibling). “As a result,” Nakano Glenn continues, “paid domestic workers suffer various forms of exclusion from benefits and rights accorded other paid workers. Instead, like family members performing unpaid care, they are treated as dependents rather than true workers.”
    • Just as with so many parents who operate without societal support, life becomes a matter of sheer endurance. But at some point, as care needs become even more acute, no amount of endurance or will or grit can make the situation tenable. There are no solutions and no real relief, other than eventual death, shaded with the peculiar mix of relief and regret.
    • We don’t know how to talk about the challenges of elder care with each other, especially at work. When O’Donnell was still trying to juggle care for her parents, who have since died, and a full-time job, she found there was no repertoire, no familiarity, no way for her coworkers to understand. You don’t just come into work one day and declare, “I provide elder care now!” Unlike with, say, the birth of a child, there’s no office-wide email, no celebration, nothing that visibly changes, no employee resource group — no resources, period.
    • The current situation is a prime example of what political scientist Jacob Hacker calls “policy drift,” where the needs of a society have changed dramatically but the social policy created to address those needs remains mired in a previous reality.
    • The most straightforward fix, according to Caroline Pearson, the elder care expert from NORC, is to invest federal dollars in creating an actually useful program for those navigating elder care, including far more robust websites with discernible care options for each state, as well as increased funding and footprint for local Area Agencies on Aging. That’s the stuff that’s easy to wedge into any federal budget. Much harder — but more important, and what we should start advocating for — is a comprehensive program for long-term care, which starts with making long-term care insurance universal, mandatory, and at least partially funded through a payroll tax. (At this point, there are funds earmarked for elder care in the budget reconciliation bill, but the breakdown of those funds is incredibly unclear.)
    • At the same time, we need to make home health care a “good American job,” with the corresponding ability to unionize and bargain for worker’s comp, health benefits, and higher pay — which will then attract more workers, reduce turnover, and reduce subsequent stress on family caregivers. For people who do still want to provide familial care, more states should remove the restrictions on who can be compensated for it, thus preventing caregivers from draining their own savings entirely in the process. Finally, there are ways to make care outside the home an actually affordable option. It doesn’t mean reducing the quality of care but requires reimagining what nursing home care looks like, particularly in terms of size, and addressing longstanding staffing shortages by making those jobs desirable as well.
    • Our grandparents’ reality, your great-grandparents’ reality, it is not your reality.
    • As a society, we are living so much longer, and the diseases and conditions we live with require so much more: more care, more medicine, more vigilance, more maintenance. Which is why piecemeal solutions are laughably insufficient. We need to actually create a viable system, one that doesn’t ask people to be unspeakably wealthy, furtively siphon off their assets, or wait for years for affordable care. Then we need to make the people working within that system visible and their labor, in turn, valuable.
    • “We can’t have a strong economy if we have millions of people working as full-time caregivers and making so little that they are still living in poverty,” Secretary of Commerce Gina Raimondo recently told the New York Times. “We can’t have a strong economy when we have millions of other people dropping out of the work force to take care of elderly loved ones.”
  • (Resolution) Dignity Alliance Massachusetts – Resolution Calling on Nursing Home Providers and Caregivers – Mandate COVID-19 Vaccinations to Protect All in their Care
  • (Vaccine Mandate) Boston.com – Massachusetts expands COVID-19 vaccine requirement to more workers caring for the elderly – September 1, 2021 – Those subject to the new mandate have until Oct. 31 to get vaccinated. The Baker administration announced Wednesday that the state will require all staff at rest homes, assisted living residences, and hospice programs, as well as an estimated 100,000 home care workers, to get the COVID-19 vaccine by Oct. 31. The mandate, when implemented through state regulations, would cover 62 freestanding rest homes, 268 assisted living residences, and 85 hospice programs in Massachusetts, in addition to the thousands of home care workers. The requirement would also apply to contractors who regularly enter rest homes, assisted living residences, and hospice programs, in addition to direct employees. For home care workers, the mandate applies to individuals providing in-home, direct care who are employed by an agency that is contracted or subcontracted with the commonwealth, as well as independent, non-agency-based home care workers.
  • (Paralympics) *Washington Post – In Japan, disability advocates hope the Paralympics will showcase the pawsomeness of service dogs – September 4, 2021 – For Japan’s disability advocates, the Tokyo Paralympics provides a global platform to raise awareness about the social stigma, barriers, and discrimination they face, similar to how the 1964 Tokyo Paralympics — the first in Asia — helped the Japanese public understand the needs of people with disabilities.
  • (Report) engAGED: The National Resource Center for Engaging Older Adults – Social Engagement for Older Adults, People with Disabilities and Caregivers During COVID-19: Results from a New Poll of Aging Network and Partner Organizations
  • (Life Well Lived) Sunday Today Show (NBC) – Lifelong ASL advocate Barbara Kannapell dies at 83 – September 5, 2021 – Barbara Kannapell, who spent her adult life advocating for deaf people around the world, has died at age 83. Kannapell, also active in the gay rights movement, co-founded the group Deaf Pride, which sought to help hearing-impaired people by making schools, hospitals, and other public places more accessible.

Download the Tuesday Digest 54: DAM Digest 054.docx

Issue #53 – August 31, 2021

  • PBS – Lives Well Lived – Celebrating the Secrets, Wit, & Wisdom of Age – Lives Well Lived, a heartwarming PBS documentary, celebrates the wit & wisdom of adults 75 years old+ who are living their lives to the fullest. Viewers will enjoy the insights of dozens of fascinating individuals – 3,000 years of life experience – distilled into a delightful mosaic of essential life lessons. – Lives Well Lived streams on the PBS website from September 1-28: – www.pbs.org/show/lives-well-lived/ – For more information: www.lives-well-lived.com/
  • (Olympics) *New York Times – Morgan Stickney’s Race Against the Clock – August 29, 2021 – Stickney, who endured first one amputation and then another, has put off surgery to chase a world record. After years of pain, she is closer to it than ever.
  • (Book Review) *New York Times – A Memoir of Pretending to See – August 23, 2021 (updated) – Review of Blind Man’s Bluff by James Tate Hill – A writer’s humorous and often-heartbreaking tale of losing his sight—and how he hid it from the world. At age sixteen, James Tate Hill was diagnosed with Leber’s hereditary optic neuropathy, a condition that left him legally blind. When high-school friends stopped calling and a disability counselor advised him to aim for C’s in his classes, he tried to escape the stigma by pretending he could still see. In this unfailingly candid yet humorous memoir, Hill discloses the tricks he employed to pass for sighted, from displaying shelves of paperbacks he read on tape to arriving early on first dates so women would have to find him. He risked his life every time he crossed a street, doing his best to listen for approaching cars.

Download the Tuesday Digest 53: DAM Digest 053.docx

Issue #52 – August 24, 2021

  • Administration on Community Living – From the VA: Let’s talk about Afghanistan – resources to support veterans and their families – August 20, 2021 – Veterans who served in Afghanistan may be experiencing a range of challenging emotions related to the U.S withdrawal from the country and the events unfolding now. Veterans who served during other conflicts also may be feeling strong emotions, as they may be reminded of their own deployment experiences. This blog post from the Department of Veterans Affairs talks about some of the common reactions and strategies for managing ongoing stress. The VA also created this compilation of VA resources, call center information, peer support, and other community services to support veterans and their families.
  • (Book) *New York Times – He Is a Journalist with Autism, but in His Book, That’s Not the Whole Story – August 18, 2021 – The political journalist Eric Garcia has autism, and he wrote his new book, “We’re Not Broken,” to “hopefully debunk various myths” about the condition. In his introduction, he notes that there are many such myths: that autism only affects white males; that there’s a connection between autism and violent behavior; that those with autism are only capable of holding jobs in technology; that they can’t have relationships or live independently. Though there are elements of memoir in the book, Garcia says his experience is just one small detail in a much larger picture of a wide variety of people who suffer in “a world that penalizes them for not playing by its rules.” Garcia talks about the profound importance of public policy.

Download the Tuesday Digest 52: DAM Digest 052.docx

Issue #51 – August 17, 2021

  • *New York Times – What I’ve Learned Over a Lifetime of Caring for the Dying – August 11, 2021 – By Dr. Lynn Hallarman, a former director of palliative care at Stony Brook University Hospital in New York and a consultant to the National Center for Equitable Care for Elders based at Harvard University
  • The Long-Term Care Community Coalition – The LTC Journal Summer 2021 – The LTC Journal covers important long-term care issues by highlighting policy updates, news reports, and academic research. Topics in this edition include:
    • NEW AT NURSINGHOME411
    • A NEW-LOOK LEARNING CENTER
    • ‘WHY COMFORT MATTERS’ AND MORE IN LTCCC’S MONTHLY WEBINARS
    • THE TIME FOR CHANGE HAS COME: LTCCC’S RECOMMENDATIONS FOR CMS
    • FAMILY COUNCIL MEETINGS IN THE NURSINGHOME411 ZOOM ROOM
    • THE NURSINGHOME411 PODCAST: A JAIL WITHIN A JAIL
    • NEWS & BRIEFS
    • OIG: CMS’S NURSING HOME STAFFING DATA FALL SHORT
    • A FAST TRACK TO HOMELESS SHELTERS
    • WORLD HEALTH ORGANIZATION: WE CAN AND MUST PREVENT AGEISM
    • LTC RESEARCH
    • REDUCING HOSPITALIZATIONS FOR NURSING HOME RESIDENTS
    • WHEN IT COMES TO FRAILTY, LOOK TO PHYSICAL THERAPY
    • MORE LTC RESEARCH HIGHLIGHTS
    • LTCCC IN THE MEDIA
  • Centers for Disease Control and Prevention (CDC) – Vaccination to Prevent COVID-19 Outbreaks with Current and Emergent Variants — United States, 2021 – July 27, 2021 – The Centers for Disease Control and Prevention (CDC) is issuing this Health Alert Network Health Advisory to notify public health practitioners and clinicians about the urgent need to increase COVID-19 vaccination coverage (i.e., the percentage of the population fully vaccinated) across the United States to prevent surges in new infections that could increase COVID-19 related morbidity and mortality, overwhelm healthcare capacity, and widen existing COVID-19-related health disparities. Increasing vaccination coverage is especially urgent in areas where current coverage is low. Unvaccinated persons account for the majority of new COVID-19 infections, hospitalizations, and deaths. Currently circulating SARS-CoV-2 variants of concern, especially the highly infectious Delta variant (B.1.617.2), are accelerating spread of infection. Unvaccinated and partially vaccinated people need to practice all recommended prevention measures until fully vaccinated. In areas with substantial and high transmission, CDC recommends that fully vaccinated individuals wear a mask in public indoor settings to help prevent the spread of Delta and protect others.
  • New York Times* – What We Think We Know About Metabolism May Be Wrong – August 12, 2021 – A new study (paper published Thursday in Science) challenges assumptions about energy expenditure by people, including the idea that metabolism slows at middle age. Central to their findings was that metabolism differs for all people across four distinct stages of life. Once the researchers controlled for body size and the amount of muscle people have, they also found no differences between men and women.
    • There’s infancy, up until age 1, when calorie burning is at its peak, accelerating until it is 50 percent above the adult rate.
    • Then, from age 1 to about age 20, metabolism gradually slows by about 3 percent a year.
    • From age 20 to 60, it holds steady.
    • And, after age 60, it declines by about 0.7 percent a year.
  • (Documentary) IMDB – Not Going Quietly – Not Going Quietly is an intimate profile of a fascinating man, Ady Barkan, a brilliant and relentless advocate for health care rights. Barkan’s ALS diagnosis and commitment to cause is interesting enough to carry the film, but by following Barkan, at only 32 years of age, Ady is diagnosed with ALS. Amyotrophic Lateral Sclerosis is commonly referred to as “Lou Gehrig’s Disease”. He explains that there is “no cure, and very little treatment”, and that the doctors tell him he has three to four years to live. Ady explains that “dying is bad”, but dealing with the insurance company is even worse. The ventilator prescribed by is doctor is deemed “experimental” by the insurance company, meaning it’s not covered. So, what would any good activist do? Well, Ady, turns his own experience into a crusade. He founds the #BeAHero campaign with Liz Jaff, a social media strategist. She films Ady’s interactions and confrontations with politicians, and they put together a 40-day, 30 congressional district road trip in a specially equipped RV. Their team also includes Tracey, who leads the role-playing on birddogging politicians, and Ady’s friend Nate, who assists him with the physical challenges. Their goal is to flip the House in the 2018 election serves a dual purpose of educating us on activism and political maneuverings.
  • (Documentary) *New York Times – ‘Not Going Quietly’ Review: Into the Long Fight – August 12, 2021 – This documentary follows the activist Ady Barkan, who toured the U.S. to help demonstrators draw attention to public health policies after his diagnosis with a fatal neurological disease.
  • (Documentary) Variety – ‘Not Going Quietly’ Review: An Emotionally Stirring, Politically Rousing Doc About Tireless Healthcare Activist Ady Barkan – August 12, 2021 – Director Nicholas Bruckman honors Barkan’s work despite escalating struggles with ALS in a traditional yet surprisingly uplifting fashion.
  • (Olympics) *New York Times – With Games Approaching, Paralympians Say They Need More Support – August 10, 2021 – U.S. Olympic officials are being criticized for their failure to provide personal assistants to some competitors. The champion swimmer Becca Meyers withdrew from the Games over the issue.
  • (Olympics) *Wall Street Journal – What Simone Biles Was Saying – July 29, 2021 – An iconic Olympian hits pause on the planet’s biggest athletic stage, widening the conversation about mental health in sports

Download the Tuesday Digest 51: DAM Digest 051.docx

Issue #50 – August 10, 2021

  • New York Times – Track Coronavirus Cases in Places Important to You – August 9, 2021 – Build your own dashboard to track the coronavirus in places across the United States.
  • New York Times – How The Times Is Counting Every Coronavirus Case in the Country – June 29, 2020 – Prompted by requests from researchers, in late March, The Times publicly released the data set for anyone to use on GitHub, an online collaboration platform for developers. It has been used by public offices, economic groups and other news organizations including Kaiser Health News, the Google News Initiative, and the Federal Reserve Bank of New York.
  • (Report) The Journals of Gerontology Series A – Patient Factors and Hospital Outcomes Associated with Atypical Presentation in Hospitalized Older Adults With COVID-19 During the First Surge of the Pandemic – July 19, 2021
  • (Advocacy) Aging and Disability Business Institute – Health Care Outreach Toolkit – This toolkit offers guidance for aging and disability community-based organizations (CBOs), such as Area Agencies on Aging (AAAs) and Centers for Independent Living (CILs), that are in the early stages of seeking to contract with health care providers and payers to provide home and community-based services and supports. CBOs at various stages of contracting with health care entities can use this toolkit as a primer on how to conduct outreach and how to craft messages best suited to potential contracting targets. This Toolkit is designed to help CBOs identify the specific audiences and messages needed to attract several types of potential health care entities as partners. Every market is different, and these messages should be tailored to represent a CBO’s unique needs, strengths, and opportunities.

Download the Tuesday Digest 50: DAM Digest 050.docx

Issue #49 – August 3, 2021

Essential Reading

*New York Times – Nobody Wants to Live in a Nursing Home. Something’s Got to Give – August 1, 2021 – Opinion piece by Michelle Cottle, member New York Times editorial board. We have documented 26 of the articles that Michelle Cotelle references in the word document digest.

Download the Tuesday Digest 49: DAM Digest 049.docx

Issue #48 – July 27, 2021

Download the Tuesday Digest 48: DAM Digest 048.docx

Issue #47 – July 20, 2021

  • (Report) Administration on Community Living – 30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017) – The Administration for Community Living has funded three longitudinal data projects of national significance for nearly 30 years. Those projects study where people with intellectual and/or developmental disabilities (ID/DD) live, if and where they work, and how public money is spent on supports. They report on the current status of those supports and on trends over time. This book reviews 30 years of data from state ID/DD agencies about community supports for people with ID/DD.
  • (Spotlight on DAM member) *Boston Globe – In a time of crisis, Chris Hoeh’s generosity comes full circle – April 21, 2017
  • (Farren Care Center) Montague Reporter – The Farren’s Culture – July 8, 2021 – Letter to the Editor authored by Judi Fonsh, MSW, LICSW, Dignity Alliance Member and former Director of Social Work at Farren Care Center. See page 4.

Download the Tuesday Digest 47: DAM Digest 047.docx

Issue #46 – July 13, 2021

  • (Report) Center for Medicare Advocacy – Nursing Home Industry is Heavily Taxpayer-Subsidized – It is well-known that Government health care programs, Medicare, and Medicaid, are the primary payers for nursing home care. The two federal programs paid facilities tens of billions of dollars for providing care to residents and were the primary payer for nearly 80% of residents. Far less known is that, in addition to receiving these direct payments, the nursing home industry also benefits from the extensive subsidies, through income-related public benefit programs – Medicaid, food assistance, housing assistance, heating assistance, cash payments, tax credits, and more – that help support its underpaid staff. The Government subsidizes the nursing home industry by billions of dollars each year by providing needs-based public benefits and earned income tax credits to its many low-wage nursing home workers.

Download the Tuesday Digest 46: DAM Digest 046.docx

Issue #45 – July 6, 2021

Download the Tuesday Digest 45: DAM Digest 045.docx

Issue #44 – June 29, 2021

Quotes of the week

“We knew this was going to be bad, but I don’t think even those of us who work in this area thought it was going to be this bad. This was not individuals who were going to die anyway. We are talking about a really big number of excess deaths.” In response to the report from the Department of Health and Human Services Inspector General Report. Quote by David Grabowski, Harvard Medical School quoted in Nursing home deaths up 32% in 2020 amid pandemic, AP News, June 22, 2021, https://tinyurl.com/NHDeathsUp32In2020

Almost 1,000 more beneficiaries died per day in April 2020 than in April 2019. The number of beneficiaries in nursing homes who had or likely had COVID-19 grew to more than 4,700 per day in the Spring of 2020 and reached a total of nearly 419,000 by the end of June. Findings reported in COVID-19 Had a Devastating Impact on Medicare Beneficiaries in Nursing Homes During 2020, Report of the U. S. Department of Health and Human Services Office of Inspector General, June 22, 2021, https://tinyurl.com/DevastatingCompleteReport

The failure of many nursing home staff members to get vaccinated has emerged as one of the most serious gaps in the United States’ defenses against COVID. Fully one-quarter of the nation’s pandemic deaths have occurred in nursing homes; yet, nationwide, more than 40 percent of staff members are still unvaccinated, leaving the homes’ frail, elderly residents vulnerable. Nursing homes struggle to reduce a serious COVID risk: many employees resist vaccination, Boston Globe, June 24, 2021, https://tinyurl.com/NursingHomesStruggle

The COVID pandemic devastated nursing homes. People living in long-term care facilities represent less than 1 percent of the U.S. population but account for a third of its COVID deaths: more than 174,000 people as of early March. And it wasn’t just residents—nursing home workers had one of the deadliest jobs last year. America’s Long-Term Care System Is Broken, Scientific American, July 2021 issue, https://tinyurl.com/LTCSystemBroken

“This isn’t just a bad-actor problem. It’s the system that’s broken.” Quote by David Grabowski, Harvard Medical School quoted in America’s Long-Term Care System Is Broken, Scientific American, July 2021 issue, https://tinyurl.com/LTCSystemBroken

Physician: “Right now, his quality of life—he doesn’t have much of one.”
Spouse: “What do you mean? Because he’s paralyzed with a brain injury, he doesn’t have a quality of life?” Physician: “Correct.” Recorded conversation between treating physician and wife of 46-year-old Michael Hickson who has a brain injury and is hospitalized with Covid-19, Ableism and Quality of Life During the Coronavirus Pandemic, Journal of Hospital Medicine, April 20, 2021, https://tinyurl.com/AbleismAndQualiytyOfLife

Download the Tuesday Digest 44: DAM Digest 044.docx

Issue #43 – June 22, 2021

Quotes of the week

“We really failed in a lot of ways, historically but also during this pandemic, to value older adults.” David Grabowski, professor at Harvard Medical School and an expert on long-term care quoted in COVID-19 Exposed the Faults in America’s Elder Care System. This Is Our Best Shot to Fix Them, Time, June 15, 2021, https://tinyurl.com/ElderCareAfterCovid

“It’s really a once-in-a-lifetime opportunity to update our public policy, our systems and our infrastructure for the next era.” Ai-jen Poo, co-director of Caring Across Generations, quoted in COVID-19 Exposed the Faults in America’s Elder Care System. This Is Our Best Shot to Fix Them, Time, June 15, 2021, https://tinyurl.com/ElderCareAfterCovid

“This is our moment to really provide transformative change to how we care for seniors and people with disabilities.  If we don’t get it right in this moment, I’m not sure we’re going to be able to do this for 10, 20 years.” Bob Casey, U. S. Senator, Pennsylvania, quoted in COVID-19 Exposed the Faults in America’s Elder Care System. This Is Our Best Shot to Fix Them, Time, June 15, 2021, https://tinyurl.com/ElderCareAfterCovid

“Perception is not something that happens to us, or in us. It is something we do.” Alva Noë, philosopher, in The Boy Who Learned to See—and What He Teaches Us About Vision, Washington Post, June 18, 2021, https://tinyurl.com/BoyWhoLearnedToSee

“They’re really making it so we don’t have a voice anymore.  And without that, we can’t get the things that we need to survive.” Susie Angel, quoted in G.O.P. Bills Rattle Disabled Voters: ‘We Don’t Have a Voice Anymore’, New York Times, June 14, 2021 https://tinyurl.com/RattleDisabledVoters

“Pandemic restrictions are falling away almost everywhere — except inside many of America’s nursing homes. Rules designed to protect the nation’s most vulnerable from COVID-19 are still being enforced even though 75% of nursing home residents are now vaccinated and infections and deaths have plummeted.” – ‘Protected them to death’: Elder-care COVID rules under fire, AP News  June 18, 2021,  https://tinyurl.com/ProtectedThemToDeath  

Download the Tuesday Digest 43: DAM Digest 043.docx

Issue #42 – June 15, 2021

Quotes of the week

If we do nothing else, we can at least keep up our improved handwashing habits this year. Some Pandemic Health Habits Deserve to Stay, Scientific American, June 2021 https://tinyurl.com/PandemicHealthHabits

“Judging by Jon [columnist George Will’s son who has Down syndrome],” Will wrote when his son turned 40 in 2013, “the world would be improved by more people with Down syndrome, who are quite nice, as humans go.” George Will, quoted in The Down syndrome bigotry of an Oxford biologist, Boston Globe, June 7, 2021 https://tinyurl.com/JacobyDownSyndromeBigotry

Download the Tuesday Digest 42: DAM Digest 042.docx

Issue #41 – June 8, 2021

Quotes of the week

… a healthier America will only be realized when we begin to look beyond the patients in front of us and prescribe solutions that lift people out of poverty, eliminate inequities and respect the dignity of all. Mona Hanna-Attisha, pediatrician and professor, Michigan State University College of Human Medicine, in “A Single Ohio Hospital Reveals All That’s Wrong with American Health Care”, a book review of The Hospital – Life, Death, and Dollars in a Small American Town by Brian Alexander, New York Times, April 8, 2021, (https://tinyurl.com/WrongAmericanHealthCare)

…as a political issue, elder care has had trouble gaining attention, much less traction. It rarely emerges as a hot topic on the campaign trail or in the halls of Congress — even though seniors vote in disproportionate numbers. The House dissolved its Permanent Select Committee on Aging more than a quarter-century ago, largely as a cost-cutting measure. Michelle Cottle, Editorial Board Member, Will Congress Abandon America’s Seniors?, New York Times, June 4, 2021, https://tinyurl.com/CongressAbandonSeniors

“If we paid staff based on how essential they are to the day-to-day operation, we’d have an entirely different pay scale.” Unidentified nursing home staff recruiter as quoted in Competition for Nursing Home Workers Hits an All-Time High, Skilled Nursing News, May 31, 2021, https://tinyurl.com/CompetitionAllTimeHigh

As we turn from COVID-19, it’s time to think seriously about how we address the needs of our aging population over the long term. That means pursuing policies and programs at the state and local level that address issues highlighted by the report — in the areas of emotional health, connectivity, and racial inequality. Editorial, Improving life for seniors, Salem News, June 7, 2021, https://tinyurl.com/ImprovingLifeForSeniors

“I need, like, five extra arms.” Chloe Mead, mother of 7-year-old, Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder, requiring intensive, round-the-clock nursing at home, describing the impact of the severe shortage of in-home care providers.    To Keep Their Son Alive, They Sleep in Shifts. And Hope a Nurse Shows Up, New York Times, June 5, 2021, https://tinyurl.com/NYTKeepSonAliveSleepInShifts

Inspirational Stories

  • (Article) *New York Times – You May Live a Lot Longer – June 7, 2021 – Commentary by David Brooks – The fraction of over-85s in the U.S. classified as disabled dropped by a third between 1982 and 2005, while the share who were institutionalized fell nearly in half.
  • (Article) *New York Times – To Keep Their Son Alive, They Sleep in Shifts. And Hope a Nurse Shows Up. – June 5, 2021 – A nursing shortage — driven by the pandemic — has made life miserable for parents with profoundly disabled children. “What if I’m so exhausted that I make a mistake?”
  • (Video) It’s Not a Burden
    • Hoda and Jenna – Hoda and Jenna spotlight ‘It’s Not a Burden’ – June 4, 2021 – June’s “Documentary of the Month” feature
    • It’s Not a Burden – Trailer
    • Official site – IT’S NOT A BURDEN: The Humor and Heartache of Raising Elderly Parents is a feature-length documentary that provides an intimate look, presented with humor and heart, at the relationships between aging parents and the adult children who care for them, examining the challenges they face and the solutions they discover along the way.
      • Emmy nominated director, Michelle Boyaner, “I was hanging out with friends one evening, and instead of chatting about shows we were binge watching, or dishing about who was dating who, we found ourselves comparing notes on adult diapers and dementia medications. We realized we’d crossed over into a strange new world we weren’t quite prepared for: we were all caring for our aging parents. They’d raised and loved us when we were most vulnerable, and now, thanks to the miracles of modern medicine – they were living a hell of a lot longer than previous generations, outlasting their bodies and retirement funds, and it was up to us, unwittingly… and in some cases unendingly – to return the favor.”
      • IT’S NOT A BURDEN is a documentary born from that evening. The touching, funny, and emotional film by Michelle Boyaner, chronicles her journey caring for her long-divorced parents (her mom battling dementia, her father, a hoarder). Other families’ supporting storylines– all races, genders, and backgrounds, are expertly woven throughout, showing the universal and inevitable issues, we as a nation face around the topic of aging. Leading with humor and heart, IT’S NOT A BURDEN takes on the relatable struggles of elder-care, with truth, humor, and compassion – exposing the multiple sides to this complex issue that affects so many while gently reminding us, we’re not alone.
  • (Holyoke Soldier’s Home) MaineBiz – Maine Veterans’ Homes $90 million Augusta development to begin – January 23, 2019 – 179,000-square-foot, four-building complex

Download the Tuesday Digest 41: DAM Digest 041.docx

Issue #40 – June 1, 2021

Quotes of the week

“We hate steps and ramps.” – George Gallego, a restaurant owner who is paraplegic, explaining the motivation for developing a fully accessible Manhattan restaurant, Contento, along with his business partners who also have disabilities. What It Takes to Make a Restaurant Accessible to Everyone, Wall Street Journal, May 26, 2021 – (https://tinyurl.com/RestaurantAccessible)

“Far too many of these buildings are very institutional, they look like hospitals, they don’t look like somebody’s home, they rarely have doctors in the building. We know nursing homes need a lot of work … A lot of the problems during the pandemic are going to persist.” – David Grabowski, Healthcare Policy Professor, Harvard Medical School. Nursing Homes Must Expect 3-Day Rule, Other CMS Requirements Will Return, Skilled Nursing News, May 25, 2021 – (https://tinyurl.com/3DayRuleReturn)

“Guardianship is a blunt force instrument that is often applied when surgical approaches are better suited to cognitively impaired elders’ needs. In some abuse cases, for example, limited authority may be all that’s necessary to prevent an elder’s bank account from being pillaged, evict an abusive family member from a victim’s home, arrange for new housing or services, or to serve as a “responsible party,” without which nursing homes won’t accept residents. What we need is a continuum of decision-making options to address the continuum of needs.” – Lisa Nerenberg, Executive Director, California Elder Justice Coalition – In defense of guardians: responding to “I Care a Lot“, April 23, 2021, https://tinyurl.com/RespondingICareALot

Inspirational Stories

Shayna’s Story – Posted on the Wheeling Forward website – Shayna Brown is a 33-year-old woman who has Neuromyletis Optica, is a nursing home resident, and uses a motorized wheelchair. https://tinyurl.com/ShaynaBrown

  • (Report) Administration on Community Living – Profile of Older Americans 2020 – The Profile of Older Americans is an annual summary of critical statistics related to the older population in the United States. Relying primarily on data offered by the U.S. Census Bureau, the Profile illustrates the shifting demographics of Americans age 65 and older. It includes key topic areas such as income, living arrangements, education, health, and caregiving. The 2020 Profile includes special sections on COVID-19 and mental health. Excel data file and graphic display are available. Previous year profiles available 2005 through 2019.
  • (Report) Agency for Healthcare Quality and Research (AHQR) – National Healthcare Quality and Disparities Reports – The National Healthcare Quality and Disparities Report presents trends for measures related to access to care, affordable care, care coordination, effective treatment, healthy living, patient safety, and person-centered care. The report presents, in chart form, the latest available findings on quality of and access to healthcare, as well as disparities related to race and ethnicity, income, and other social determinants of health. Includes state level snapshots and various chartbooks. Report years available from 2003 through 2019.
  • (Report) SAGE – LGBTQ AGING: The Case for Inclusive Long-Term Care Communities
  • (Article) Kaiser Health News – Caring for an Aging Nation – May 28, 2021 – The number of Americans 65 and older is expected to nearly double in the next 40 years. Finding a way to provide and pay for the long-term health services they need won’t be easy.
  • (Website) Wheeling Forward – Mission: We help people with disabilities experience life to the fullest and enable them to see possibility where others see insurmountable obstacles.We work with individuals to provide the advocacy, mentorship, and support services they need to reach their goals, no matter how big or small. Programs include:
    • Nursing home transition program
    • Spinal mobility program
    • Adaptive sporting
    • Wine on Wheels
    • Axis Project, a multidisciplinary physical activity center
  • (Video) Posted on the Wheeling Forward website – Shayna’s Story – Shayna Brown is a 33-year-old woman who has Neuromyletis Optica, is a nursing home resident, and uses a motorized wheelchair.
  • (Video) CNBC News – Using the pandemic to rethink the nursing home model – November 18, 2020
  • (Video) TED Talk – How Societies Can Grow Old Better – March 2013 – Jared Diamond, UCLA Professor and Pulitzer Prize winner, looks at how many different societies treat their elders — some better, some worse — and suggests we all take advantage of experience.
  • (Holyoke Soldier’s Home) Maine Veterans’ Homes – Building A Home for Heroes – Website detailing plans for the development of a nursing home for 135 Maine veterans utilizing the Veteran Administration’s “Small House” design model. The clinical needs residents will be addressed in state-of-the-art facilities. The model of care allows residents greater flexibility to be social, to enjoy time outdoors in our courtyards, and even go fishing in our on-site trout pond. Studies show that when individuals can no longer live at home, they do better in homelike settings: natural lighting, comfortable living rooms, private rooms. The design of the new Augusta Home follows the national movement of the Small House Model. It not only brings changes in the physical layout of the home, but it also modernizes the way that staff will fulfill the mission of “caring for those who served.”
  • (Holyoke Soldier’s Home) The Salem News – Baker must testify on COVID-19 deaths at soldiers’ home – May 31, 2021 – Editorial

Download the Tuesday Digest 40: DAM Digest 040.docx

Issue #39 – May 25, 2021

Quotes of the week

…when you’ve been deprived of dignity you put a high, high premium on it. – President Joseph E. Biden in an interview with David Brooks, Has Biden Changed? He Tells Us, New York Times, May 21, 2021, https://tinyurl.com/HasBidenChanged

Nature will usually take pretty good care of you for about half a century if you don’t smoke.  After that, it’s up to you. – Jane E. Brody, A Writer’s Reflection on Turning 80, New York Times, May 18, 2021, https://tinyurl.com/JaneBrodyBirthdayMilestone

Among the abundant pleasures of turning 80, in addition to being well beyond the danger of dying young, is this: Having become skillful at ignoring the merely recurring things, you have more brain cells to devote to other things worth noticing and trying.
So, it is a momentous social achievement that those who turn 80 this month — they are only 18 months older than the president, who is only eight months older than Mick Jagger — must wait five more years to get the satisfaction of joining a decreasingly exclusive club: By percentage, this nation’s most rapidly growing age cohort consists of those 85 and older. –  George F. Will, What my 80 years have taught me, Washington Post, May 7, 2021, https://tinyurl.com/80YearsHaveTaughtMe

Inspirational Stories

  • (Tribute) The National Consumer Voice for Long-Term Care – Tribute to Those Impacted by COVID-19 – The Consumer Voice honors and remembers those who have died in nursing homes during the Covid-19 pandemic. Watch a tribute video remembering those who have died in a long-term care facility during the COVID-19 pandemic and visit the tribute stories page to hear directly from residents and family members about their experiences. To read a few of these residents’ stories, click here: https://tinyurl.com/ConsumerVoiceTributes. If you would like to add a name to be honored or remembered on this page, please email their name, photo, and any information you would like included to info@theconsumervoice.org.
  • (Report) University of Massachusetts and The Community Catalyst – What Family Caregivers Need: Findings from Listening Sessions – May 17, 2021 – The family caregiver listening sessions included a range of diverse caregivers, from teen caregivers to grandparents providing care, and caregivers of varying racial and ethnic backgrounds. The listening sessions directly captured the emotional and financial stresses caregivers experience, and their priorities and concerns, including respite, caregiving education and training, and financial considerations, including direct pay for caregiving, workplace flexibility, and tax policy changes that support caregivers.
  • (Report) Center for Dignity in Healthcare – The COVID-19 Pandemic and People with Disabilities: Primary Concerns, the AUCD Network Response, and Needs for the Future – March 2021 – Of the 12 million people who need long term services and supports, only 1.5 million live in congregate settings such as nursing homes and other types of institutions, with the remainder in home and community settings. Gaps in HCBS must continue to be addressed through enhanced federal funding, helping people who were relocated during COVID return home, and continuing to transition people from congregate setting to their communities as guaranteed under civil rights laws.
  • (Report) AARP Research Report – Caregiving in the U.S. – May 2020 – This study presents a portrait of unpaid family caregivers today based on data collected in 2019. The core areas examined:
    • The prevalence of caregivers in the United States
    • Demographic characteristics of caregivers and care recipients
    • The caregiver’s situation in terms of the nature of caregiving activities, the intensity and duration of care, the health conditions and living situation of the person to whom care is provided, and other unpaid and paid help provided
    • How caregiving affects caregiver stress, strain, and health
    • Financial impact on caregivers
    • Impacts on and supports provided to working caregivers
    • Information needs and resources
    • Technology and role of online support
  • (Website) U. S. Census Bureau – Community Resilience Estimates – April 28, 2021 – Community resilience is the capacity of individuals and households to absorb, endure, and recover from the health, social, and economic impacts of a disaster such as a hurricane or pandemic. When disasters occur, recovery depends on the community’s ability to withstand the effects of the event. To facilitate disaster preparedness, the Census Bureau has developed new small area estimates, identifying communities where resources and information may effectively mitigate the impact of disasters.
  • (Holyoke Soldiers’ Home) Massachusetts Legislature – Conference Committee Report on the bond funding for the Holyoke Soldiers’ Home (H.3770) – May 15, 2021
  • (Holyoke Soldiers’ Home) CommonWealth Magazine – Big demographic changes pose challenge to caring for veterans’ needs – May 5, 2021 – Authored by Coleman Nee, Disabled American Veterans

Download the Tuesday Digest 39: DAM Digest 039.docx

  • (Quote of the Week) Boston Globe – I am so busy taking care of things, that sometimes I forget to look at him.  Doctor’s appointments.  Medications.  Physical therapists, occupational therapists. Who is scheduled this week?  What time?  Are you hungry?  Are you thirsty? I see him, of course.  I see his thin, white hair, his faded blue eyes, his false teeth that sometimes slip when he’s talking, the way his mother did, his hearing aid that shrieks its presence, but is useless as a bandaid behind his left ear.  An old man in an old chair, struggling to see, to hear, to keep up, to get up, and not give up. – by Beverly Beckham, Searching for the Heart of the Matter – May 13, 2021 (updated)
  • (Quote of the Week) STAT News – Imagine what would happen if clinicians called the people they treat “clients” or “activated consumers” or “partners.” With that mindset, they move away from implying what they will do to or for them, and instead describe what they will do with them as proactive partners. – by Summer Knight – Let’s banish the term ‘patient’ from the health care lexicon – May 13, 2021
  • (Quote of the Week) Politico – We can’t just go back to business as usual after the tragedy we’ve seen in nursing homes. It’s not an acceptable solution. – Lori Smetanka, Executive Director of National Consumer Voice for Quality Long-Term Care, quoted in Will the Nursing Home of the Future be an Actual Home? – April 30, 2021
  • (Inspirational Story) The Boston Globe – Searching for the Heart of the Matter – May 13, 2021 (updated) – Column by Beverly Beckham
  • (Communities of Strength Challenge) Administration on Community Living – Older Americans Month Challenge – The Administration on Community Living has issued a challenge in recognition of Older Americans Month. Use one word to describe your “community of strength”. Submit it via Twitter using the hashtags: #OAM21 Challenge; #CommunitiesOfStrength!; #OlderAmericansMonth.
  • (Day of Remembrance) Gray Panthers NYC – A National Day of Remembrance: Honoring Nursing Home Lives Lost – Thursday, May 20, 2021, 5:00 to 6:00 p.m. – A national online event to honor more than 182,000 nursing home lives lost to COVID-19. This program will feature shared remembrances, spiritual reflections, musical tributes, and statements by elected officials.
  • (Website) Open Doors – OPEN DOORS is a network of artists, activists and advocates motivated by community building, gun violence prevention and disability rights. At the center of this network are the Reality Poets—a group of current and former residents of an NYC long-term care facility, who are bonded through a shared mission to spread a message of realness, resilience, and healing.
  • (ACL Online Data Resources) Administration on Community Living – Profile of State Older American Act Programs in Massachusetts – State Profile provide state level summaries and pre-populated tables of key data elements from Older Americans Act (OAA) Programs. State Profiles is designed to provide interactive comparisons with other states and the total US, as well as the locations of all State Units on Aging (SUA), Area Agencies on Aging (AAA), and Tribal Organizations. Annual data is available for years 2006 through 2018.
  • (ACL Online Data Resources) Administration on Community Living – AGing, Independence, and Disability (AGID) Program Data Portal – The AGing, Independence, and Disability (AGID) Program Data Portal is an on-line query system that provides access to ACL-related program performance results, surveys, and other data files. The four options or paths through AGID were designed to provide different levels of focus and aggregation of the data – from individual data elements within Data-at-a-Glance, to State-level summaries in State Profiles, to detailed, multi-year tables in Custom Tables, and finally, to full database access within Data Files. The purpose of the system is to:Provide a single, user friendly source for a variety of information on ACL supportive services and comprehensive systems of care for older adults and their caregivers, and people with disabilities of all ages
    • Allow users to quickly produce tables, maps, and other summary information from ACL-related data files and surveys, supplemented by Census-based population and demographic characteristics
    • Provide users full access to results from national surveys of recipients of Older Americans Act services and ACL Special Tabulations produced by the Census Bureau
  • (Article) STAT News – Let’s banish the term ‘patient’ from the health care lexicon – May 13, 2021
  • (Article) Politico – Will the Nursing Home of the Future be an Actual Home? – April 30, 2021 – The Covid-19 pandemic is accelerating a movement aimed at completely rethinking how we age — and where.
  • (Article) Deloitte Insights – Are consumers already living the future of health? – August 13, 2020 – Key trends in agency, virtual health, remote monitoring, and data-sharing
  • (Book) The Upper Hand: Leveraging Limitations to Turn Adversity into Advantage By Chris Ruden – Chris Ruden is an international keynote speaker, elite powerlifter, entrepreneur, disabled model, and advocate. Despite having been born with only two fingers on his left hand and a shorter left arm, he can deadlift over 675 pounds and is on track to becoming the World’s strongest adaptive athlete. His book, The Upper Hand, gives readers the simple tools they need to turn any perceived adversity into an advantage.
  • (Book) People – Bodybuilder Chris Ruden Reveals How He Overcomes Disability and Diabetes to Gain The Upper Hand – May 10, 2021
  • (American Rescue Plan Act funding) Administration on Community Living – ACL Policy Update: American Rescue Plan’s Additional Funding for Medicaid HCBS – May 13, 2021 – Acting Administrator & Assistant. Secretary for Aging, Alison Barkoff, addresses the American Rescue Plan’s additional funding
  • (Holyoke Soldiers’ Home) Massachusetts Legislature – Conference Committee Report on the bond funding for the Holyoke Soldiers’ Home (H.3770) – May 15, 2021
  • (Holyoke Soldiers’ Home) CommonWealth Magazine – Big demographic changes pose challenge to caring for veterans’ needs – May 5, 2021 – Authored by Coleman Nee, Disabled American Veterans
  • (Elder Abuse) National Center on Elder Abuse (NCEA) – World Elder Abuse Awareness Day New Material – World Elder Abuse Awareness Day (WEAAD) 2021 is on June 15th. This site has added new material to educate about elder abuse prevention including translation to multiple languages.
  • (Elder Abuse) National Center on Elder Abuse (NCEA) – Coming Back Strong After COVID-19: Federal Elder Justice Innovations and Resources – Wednesday, June 9, 2021, 12:00 p.m. – This webinar will highlight prominent elder justice issues and resources to strengthen the elder justice movement as we rebuild from the pandemic. Attendees will learn about tools and tips to enhance their elder abuse outreach and response efforts and strategies to spark community engagement. Presenters are from the Administration on Community Living, the National Clearinghouse on Elder Abuse, Elder Justice Initiative at the Department of Justice (DOJ), Securities and Exchange Commission (SEC), Social Security Administration (SSA), and the Consumer Financial Protection Bureau (CFPB).
  • (Elder Abuse) AARP – Elder Abuse in the time of COVID-19: Where are we Now? – Friday, June 25, 2021, 10:00 to 11:45 a.m. – Featuring: Paul Greenwood, Former San Diego District Attorney and Expert on Elder Abuse
  • (Elder Abuse) Judicial Trends in Public Health: The Network for Public Health Law – Garcia v. Welltower OpCo Group LLC et al. – May 14, 2021 – A California federal court found that the Public Readiness and Emergency Response (PREP) Act provided immunity in a suit alleging elder abuse and neglect, wrongful death, and intentional infliction of emotional distress.
  • (State Budget Process) Massachusetts FY 2022 State Budget Process – Tracks the progress of the FY 2022 budget. https://tinyurl.com/MAHouseFY22Budget

Download the Tuesday Digest 38: DAM Digest 038.docx

  • (Quote of the Week) New York Times – For years, federal health officials and some insurers have tried to encourage more stay-at-home care, and the pandemic has created a sense of urgency. “It’s really changed the paradigm on how older adults want to live,” said Dr. Sarita Mohanty, the chief executive of the SCAN Foundation, a nonprofit group focused on issues facing older adults. – May 6, 2021: https://tinyurl.com/CovidForcesFamilies
  • (Inspirational Story) – Today Show (NBC) – Man walks Appalachian Trail after Parkinson’s diagnosis – April 11, 2021 – One piece of advice Parkinson’s disease patients often hear from their doctors is that they need to keep their bodies moving. Meet a man who is taking the advice to the extreme. “I feel like as long as I stay on top of the disease that I’m going to win. I’m not going to let Parkinson’s interrupt my journey,” Dan Schoenthal says.
  • (Communities of Strength Challenge) Administration on Community Living – Older Americans Month Challenge – The Administration on Community Living has issued a challenge in recognition of Older Americans Month. Use one word to describe your “community of strength”. Submit it via Twitter using the hashtags: #OAM21 Challenge; #CommunitiesOfStrength!; #OlderAmericansMonth.
  • A National Day of Remembrance: Honoring Nursing Home Lives Lost) – Gray Panthers NYC – A National Day of Remembrance: Honoring Nursing Home Lives Lost – Thursday, May 20, 2021, 5:00 to 6:00 p.m. – A national online event to honor more than 182,000 nursing home lives lost to COVID-19. This program will feature shared remembrances, spiritual reflections, musical tributes, and statements by elected officials.
  • (American Rescue Plan Act) Center for State Policy Analysis at Tufts University’s Tisch College – Report Analyzes How Massachusetts Can Maximize Benefit of American Rescue Plan – Describes key principles for spending billions in federal aid
  • (Podcasts) STAT News (Podcast) – A physician and a philosopher on long Covid’s mind-body mystery – May 5, 2021
  • (ACL Online Data Resources) Administration on Community Living – Profile of State Older American Act Programs in Massachusetts – State Profile provide state level summaries and pre-populated tables of key data elements from Older Americans Act (OAA) Programs. State Profiles is designed to provide interactive comparisons with other states and the total US, as well as the locations of all State Units on Aging (SUA), Area Agencies on Aging (AAA), and Tribal Organizations. Annual data is available for years 2006 through 2018.
  • (ACL Online Data Resources) Administration on Community Living – AGing, Independence, and Disability (AGID) Program Data Portal – The AGing, Independence, and Disability (AGID) Program Data Portal is an on-line query system that provides access to ACL-related program performance results, surveys, and other data files. The four options or paths through AGID were designed to provide different levels of focus and aggregation of the data – from individual data elements within Data-at-a-Glance, to State-level summaries in State Profiles, to detailed, multi-year tables in Custom Tables, and finally, to full database access within Data Files. The purpose of the system is to:
    • Provide a single, user friendly source for a variety of information on ACL supportive services and comprehensive systems of care for older adults and their caregivers, and people with disabilities of all ages
    • Allow users to quickly produce tables, maps, and other summary information from ACL-related data files and surveys, supplemented by Census-based population and demographic characteristics
    • Provide users full access to results from national surveys of recipients of Older Americans Act services and ACL Special Tabulations produced by the Census Bureau
  • (Article) *New York Times – Covid Forces Families to Rethink Nursing Home Care – May 8, 2021 – Even with vaccines, many older people and their relatives are weighing how to manage at-home care for those who can no longer live independently.
  • (Article) ABC News – Long-term care industry facing changes as pandemic pushes more families toward home care – May 6, 2021 – Consumers are shifting away from nursing homes, according to a new study.
  • (Article) AP News – AP-NORC poll: Government should help Americans age at home – May 3, 2021 – Many Americans agree that government should help people fulfill a widely held aspiration to age in their own homes, not institutional settings, a new poll finds.
  • (Community Champions video series) Centers for Medicare and Medicaid Services – To support the long-term care community, CMS is producing a social media videos highlighting staff, referred to as Community Champions. This edition features staff who moved from being initially uncertain about receiving the COVID-19 vaccine to accepting the vaccine– and encouraging their peers to do the same. – https://tinyurl.com/LTCCommunityChampions
  • (Massachusetts Alzheimer’s Disease and Related Dementias) Massachusetts Alzheimer’s Advisory Council – Massachusetts State Plan on Alzheimer’s Disease and Related Dementias – April 2021 – The Massachusetts Alzheimer’s Advisory Council, established under Chapter 220 of the Acts of 2018, released the Massachusetts State Plan on Alzheimer’s Disease and Related Dementias. Alzheimer’s disease and other related dementias are a large and growing public health crisis. Today, there are approximately 130,000 people in Massachusetts living with dementia who are supported by over340,000 family caregivers. The Massachusetts Advisory Council is charged with advising the Executive Office of Health and Human Services and the Massachusetts state legislature on policies around Alzheimer’s disease and related dementias. The Council is currently chaired by the Secretary of the Executive Office of Elder Affairs and is composed of a diverse panel of caregivers, clinicians, dementia advocates, health care providers, legislators, public health professionals, and researchers. The Advisory Council identified and discussed issues faced by Massachusetts residents living with dementia and their caregivers, as well as listened to the voices of individuals impacted by dementia and shared their own expertise, knowledge, and ideas. The Massachusetts state plan includes recommendations and implementation plans approved by the Advisory Council for each of the following focus areas: (1) Caregiver Support and Public Awareness,(2)Diagnosis and Services Navigation, (3) Equitable Access and Care, (4) Physical Infrastructure, (5) Public Health Infrastructure, (6)Quality of Care, and (7)Research.
  • (Massachusetts Alzheimer’s Disease and Related Dementias) Massachusetts Alzheimer’s Advisory Council – Annual Report of the Alzheimer’s Advisory Council – April 2021
  • (Holyoke Soldiers’ Home) Commonwealth Magazine – Big demographic changes pose challenge to caring for veterans’ needs – May 5, 2021 – We need to be proactive in planning to preserve infrastructure for those who serve. Article authored by Coleman Nee, Disabled American Veterans and former Secretary of Massachusetts Department of Veterans’ Services
  • (Elder Abuse) National Center on Elder Abuse (NCEA) – Coming Back Strong After COVID-19: Federal Elder Justice Innovations and Resources – Wednesday, June 9, 2021, 12:00 p.m. – This webinar will highlight prominent elder justice issues and resources to strengthen the elder justice movement as we rebuild from the pandemic. Attendees will learn about tools and tips to enhance their elder abuse outreach and response efforts and strategies to spark community engagement. Presenters are from the Administration on Community Living, the National Clearinghouse on Elder Abuse, Elder Justice Initiative at the Department of Justice (DOJ), Securities and Exchange Commission (SEC), Social Security Administration (SSA), and the Consumer Financial Protection Bureau (CFPB).
  • (State Budget Process) Massachusetts FY 2022 State Budget Process – Tracks the progress of the FY 2022 budget. https://tinyurl.com/MAHouseFY22Budget

(Emergency Broadband Benefit Program) Federal Communications Commission – FCC Launches Emergency Broadband Benefit Program on May 12 – May 12, 2021 – The Emergency Broadband Benefit is a Federal Communication Commission (FCC) program to help families and households struggling to afford internet service during the COVID-19 pandemic. This new benefit will connect eligible households to jobs, critical healthcare services, virtual classrooms, and more. The FCC has announced that eligible households can apply for the program starting May 12, 2021 in three ways:

  1. Contact your preferred participating broadband provider directly to learn about their application process.
  2. Go to GetEmergencyBroadband.org to apply online and to find participating providers near you.
  3. Call 833-511-0311 for a mail-in application and return it along with proof of eligibility to: Emergency Broadband Support Center, P.O. Box 7081, London, KY 40742.

Individuals who use videophones and are fluent in American Sign Language (ASL) may call the FCC’s ASL Consumer Support Line at (844) 432-2275 (videophone). On April 13, the FCC and ACL hosted a webinar that provided an overview of the benefit, eligibility criteria, how to apply, and the FCC’s partner toolkit materials. Webinar materials are now available:

Download the Tuesday Digest 37: DAM Digest 037.docx

  • (Updated Nursing Home Guidance) CMS: Center for Clinical Standards and Quality/Survey & Certification Group – Nursing Home Visitation Guidance – Updated April 27, 2021
  • (Updated Nursing Home Guidance) Center for Disease Control and Prevention – Updated Healthcare Infection Prevention and Control Recommendations in Response to COVID-19 Vaccination – April 27, 2021
  • (Updated Nursing Home Guidance) CMS: Center for Clinical Standards and Quality/Survey & Certification Group – Visitation at Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) and Psychiatric Residential Treatment Facilities – February 10, 2021
  • (Life During the Pandemic) Health Affairs – In Patients We Trust: Why Clinicians Need To Believe And Respect Patients – “Why do I have to prove that there’s something wrong with me in order for my pain to be treated.” – April 29, 2021
  • (Broadcast Report) Innovation Hub (NPR) – The Invisible Future of American Jobs – April 30, 2021 – Over the last several decades, manufacturing jobs in the U.S. have withered. Meanwhile, health care has become the fastest growing job sector in the country, and it’s been on top for years. According to Gabriel Winant, a historian at the University of Chicago, and author of “The Next Shift: The Fall of Industry and the Rise of Health Care in Rust Belt America,” not only are those two opposing trends related, but there are also some serious consequences to the connection. Three Takeaways:
    • The link between a growth in health care jobs and the shrinkage in manufacturing comes down to a specific way that people in the Rust Belt are aging. The sweeping plant closures in places like Pittsburgh in the 1980s created an entire population of displaced workers. Health conditions associated with the stress of unemployment often caused serious health issues, including a higher mortality rate among those who had been laid off. That all culminated in a huge need for health care workers; so as factories shut down, doctors, nurses, nursing home workers, janitors, and more got to work.
    • Health care now dominates the job market, but Winant calls the industry “invisible.” When politicians speak about job creation and economic revitalization, they are commonly referring to manufacturing, rather than the real economic leader in jobs. Despite their huge share in the economy, many health care and hospital workers, from RNs to janitorial staff, have seen wages, benefits, and working conditions stagnate.
    • Hospitals have a huge amount of power in the cities that rely on them, which has given them the ability to grow and merge, thereby becoming massive institutions. These hospitals also run on both public and private money, which Winant says has led to a fragmentation of responsibility – not a good thing when you’re looking to do a massive vaccine rollout.
  • (Report) Milbank Memorial Fund – Primary Care in the COVID-19 Pandemic – April 29, 2021
  • Massachusetts FY 2022 State Budget Process – House of Representatives Budget Version – The House Committee on Ways and Means examines the Governor’s Proposal and releases its own recommendations for the annual budget for deliberation by the House of Representatives. Prior to release of the House Ways and Means Budget, Joint Ways and Means Committee budget hearings are held across the state.

Download the Tuesday Digest 36: DAM Digest 036.docx

  • (Holyoke Soldiers’ Home) WWLP.com – Senate Boosts Holyoke Bond Bill to $600M, Removes Labor Agreement – April 23, 2021
  • (Holyoke Soldiers’ Home) Massachusetts State Senate – Senate Amendment (SB 2439) regarding Holyoke Soldiers’ Home Bond Authorization
  • (Holyoke Soldiers’ Home) Massachusetts House of Representatives – An Act financing the reconstruction of the Soldiers’ Home in Holyoke
  • (Holyoke Soldiers’ Home) AP News – Massachusetts House OKs bill for new Holyoke Soldiers’ Home – April 15, 2021
  • (Holyoke Soldiers’ Home) *State House News Service via Banker & Tradesman – Building Trades Rattled Over Labor Agreement in Holyoke Home Bill – April 15, 2021
  • (Holyoke Soldiers’ Home) *The Boston Globe – In pushing old-style approach for a new soldiers’ home, Mass. abandons key blueprint for care – April 14, 2021 – Letter to the Editor submitted Dignity Alliance Massachusetts
  • (Holyoke Soldiers’ Home) Health Affairs – The Big Idea Behind A New Model of Small Nursing Homes – March 2021 – Long-term care facilities have been devastated by COVID-19, with one exception: a group of small facilities called Green Houses.
  • (Holyoke Soldiers’ Home) Payette Associates – Soldiers’ Home in Holyoke Rapid Planning Report – Needs Assessment and Implementation Roadmap – November 11, 2020 – In September 2020, the Commonwealth’s Division of Capital Asset Management and Maintenance (DCAMM) retained the services of Payette Associates to evaluate the future of 70-year-old Soldiers’ Home in Holyoke campus. The goal was to recommend what programs and services the Home should provide, compare them to the current and future needs of the Veterans in the Commonwealth, establish the potential size of those programs based on current and future needs, and to estimate their potential cost so that the Commonwealth could begin the next steps required to update the facility.
  • (Holyoke Soldiers’ Home) U. S. Department of Veterans Affairs – Small House (SH) Model Design Guide – March 2019 (revised) – This document is used as a guide to the standards for the planning and design of VA facilities based on the Small House (SH) Model as well as for State Veterans Homes (SVH) and is supplementary to current technical manuals, building codes, and other VA criteria in planning healthcare facilities. This Small House (SH) Model Design Guide is also a tool to assist VA medical center staff and clinicians in better understanding the choices that project designers ask them to make during the design process. This Design Guide also serves the VA’s design consultants in understanding the planning and design direction preferred by VA.
  • (Holyoke Soldiers’ Home) Massachusetts Institute of Technology – The Current and Future Long-Term Care Needs of Massachusetts’ Veterans – October 31, 2013 – In June 2013, the Commonwealth of Massachusetts commissioned a group of researchers from the Massachusetts Institute of Technology to examine the present and future long-term care of the State’s veteran population. This document represents the results of this commission.
  • NPR – Life During the Pandemic – Suzie Mclean had been a nurse in a busy ambulatory surgery center for decades when the pandemic hit in 2020. Her mother, Lillian House, then 97, was living in an independent retirement complex and beginning to struggle with routine tasks due to declining health. So, Mclean added a small addition onto her Wilmington, N.C., home so that they could quarantine as a family. Nothing, she says, could have prepared her for the “exhaustion or the joy” of wearing so many hats: instant roommate, Netflix navigator, hair stylist, nail technician, spa direct, confidant, cook, dishwasher, dietitian, hearing aid repairman and all-around comfort keeper. Mclean treasures the time they spend reading together at the end of each day: House with reading glasses that magnify 10x and her own 2.75’s. “I look over and see the most beautiful, and resilient human I know,” she writes. “My Mom. Lillian, now 98. What a gift.”
  • Health Affairs – In Celebration of National Poetry Month
  • (Federal Proposal) Axios – Democratic senators call on Biden to expand Medicare in American Families Plan – April 25, 2021
  • (Federal Proposal) *Modern Healthcare – House Lawmakers Want Medicare To Fund Mental Health Peer Support Services – April 23, 2021
  • (Report) Kaiser Family Foundation – COVID-19 Long-Term Care Deaths and Cases Are at An All-Time Low, Though A Rise in LTC Cases In A Few States May Be Cause for Concern – April 22, 2021
  • (Report) Centers for Medicare and Medicaid Centers: Accountable Health Communities – Building Strong a Community Partnerships to Address Social Needs – A Case study in effective advisory board collaboration from the Accountable Health Communities Model
  • U. S. Census Bureau – Community Resilience Estimates – Community resilience is the capacity of individuals and households to absorb, endure, and recover from the health, social, and economic impacts of a disaster such as a hurricane or pandemic. Individual and household characteristics from the 2018 American Community Survey (ACS) were modeled, in combination with publicly available data from the 2018 National Health Interview Survey (NHIS), to provide tract and county level estimates. Maps display by county percentages and number of persons with 3 or more risk factors.
  • U. S. Census Bureau – Coronavirus (COVID-19) Pandemic Data Hub
  • (Website) We Can Do This – A Health and Human Services campaign to increase vaccine confidence while reinforcing basic prevention measures.
  • (Website) Department of Health and Human Services – User Guide for Older Adults Toolkit – April 13, 2021 – This material is intended for all organizations that communicate directly with the older adult community.
  • Massachusetts FY 2022 State Budget Process – House of Representatives Budget Version – The House Committee on Ways and Means examines the Governor’s Proposal and releases its own recommendations for the annual budget for deliberation by the House of Representatives. Prior to release of the House Ways and Means Budget, Joint Ways and Means Committee budget hearings are held across the state.

Download the Tuesday Digest 35: DAM Digest 035.docx

  • (Voluntary nursing home closures) Agawam Healthcare
  • (Voluntary nursing home closures) Wareham Healthcare
  • (Voluntary nursing home closures) Massachusetts Department of Public Health – Information about nursing home closures
  • (Holyoke Soldiers’ Home) AP News – Massachusetts House OKs bill for new Holyoke Soldiers’ Home – April 15, 2021
  • (Holyoke Soldiers’ Home) *State House News Service via Banker & Tradesman – Building Trades Rattled Over Labor Agreement in Holyoke Home Bill – April 15, 2021
  • (Holyoke Soldiers’ Home) *The Boston Globe – In pushing old-style approach for a new soldiers’ home, Mass. abandons key blueprint for care – April 14, 2021 – Letter to the Editor submitted Dignity Alliance Massachusetts
  • (Holyoke Soldiers’ Home) Payette Associates – Soldiers’ Home in Holyoke, Rapid Planning Report, Needs Assessment and Implementation Roadmap – November 11, 2020 – In September 2020, the Commonwealth’s Division of Capital Asset Management and Maintenance (DCAMM) retained the services of Payette Associates to evaluate the future of 70-year old Soldiers’ Home in Holyoke campus. The goal was to recommend what programs and services the Home should provide, compare them to the current and future needs of the Veterans in the Commonwealth, establish the potential size of those programs based on current and future needs, and to estimate their potential cost so that the Commonwealth could begin the next steps required to update the facility.
  • (Holyoke Soldiers’ Home) U. S. Department of Veterans Affairs – Small House (SH) Model Design Guide – March 2019 (revised) – This document is used as a guide to the standards for the planning and design of VA facilities based on the Small House (SH) Model as well as for State Veterans Homes (SVH) and is supplementary to current technical manuals, building codes, and other VA criteria in planning healthcare facilities. This Small House (SH) Model Design Guide is also a tool to assist VA medical center staff and clinicians in better understanding the choices that project designers ask them to make during the design process. This Design Guide also serves the VA’s design consultants in understanding the planning and design direction preferred by VA.
  • (Holyoke Soldiers’ Home) Massachusetts Institute of Technology – The Current and Future Long-Term Care Needs of Massachusetts’ Veterans – October 31, 2013 – In June 2013, the Commonwealth of Massachusetts commissioned a group of researchers from the Massachusetts Institute of Technology to examine the present and future long-term care of the State’s veteran population. This document represents the results of this commission.
  • (website) National Association of Councils on Developmental Disabilities (NACDD) – GetOutTheVaccine.org – A website that helps people with disabilities make informed decisions about getting vaccinated
  • (website) U. S. Department of Health and Human Services – The COVID-19 Community Corps – The HHS COVID-19 public education campaign is a national initiative to increase public confidence in and uptake of COVID-19 vaccines while reinforcing basic prevention measures such as mask wearing and social distancing. Through a nationwide network of trusted messengers and consistent, fact-based public health messaging, the campaign helps the public make informed decisions about their health and COVID-19, including steps to protect themselves and their communities. The effort is driven by communication science and provides tailored information for at-risk groups. Strategy and Goals: This effort focuses on Americans who want to protect their health, but may have questions about the COVID-19 vaccines. We aim to:
    • Explain how Americans can protect themselves from COVID-19.
    • Strengthen public confidence in the vaccines so those who are hesitant will be more willing to consider vaccination.
    • Increase vaccine uptake by informing Americans about how and where to get vaccinated
  • (Biden Proposal) The Gerontology Institute Blog – UMass Boston – Reinvesting in home and community-based services – April 16, 2021 – How the Biden Administration’s $1.9 trillion relief bill will impact Medicaid in Massachusetts
  • (Biden Proposal) *The New York Times – Rosie Could Be a Riveter Only Because of a Care Economy. Where Is Ours? – April 16, 2021 – The men and women who went to work and war during World War II were backed by a care economy. We need one too.
  • (Biden Proposal) *The New York Times – Biden Takes on Sagging Safety Net with Plan to Fix Long-Term Care – April 15, 2021 – The proposal to spend $400 billion over eight years faces political challenges and a funding system not designed for the burden it has come to bear.
  • (Biden Proposal) Politico – Dems weigh narrower health ambitions for infrastructure package – April 15, 2021 – The “social infrastructure” piece of the $2 trillion-plus bill would be progressive lawmakers’ best chance to broaden the social safety net before the mid-term election.
  • (Biden Proposal) The Hill – Why an infrastructure for aging is good for America – April 13, 2021
  • (Biden Proposal) MarketWatch – Opinion: Caregiving is a vital part of the nation’s infrastructure like bridges and roads – April 12, 2021 (updated April 13, 2021)
  • (Biden Proposal) *New York Times – At Last, Aid for Senior Nutrition That Offers More Than Crumbs – April 10, 2021 – Meal programs for older adults have long been underfunded. The new economic recovery plan will help.
  • (Biden Proposal) *Washington Post – $5 billion in stimulus funds tabbed for reducing homelessness; Biden administration aims to get 130,000 people off the street – April 8, 2021 – Housing and Urban Development Secretary Marcia L. Fudge said in an announcement that the money, allocated under the $1.9 trillion stimulus package, could be used for rental assistance, affordable housing development and sheltering people in hotels.
  • (Report) AARP Public Policy Institute – Spotlight: Older Americans Act – February 2019 – The Older Americans Act (OAA) provides critical services—such as home-delivered and congregate meals, family caregiver support, in-home assistance, preventive health services, transportation, job training, protection from abuse, and other supportive services—that help about 11 million older adults live as independently as possible. In fiscal year 2019, OAA federal funding was $2.06 billion. Funding for the program has failed to keep up with inflation and increased demand from a rapidly aging population.
  • (Book Review) Wall Street Journal – Jory Fleming Sees the Neurotypical World from an Outsider’s Perspective – April 17, 2021 – An author and Rhodes Scholar challenges misguided assumptions about people with autism. Author of How to Be Human: An Autistic Man’s Guide to Life (Simon & Shuster, 2021).(Book Review) Wall Street Journal – Jory Fleming Sees the Neurotypical World from an Outsider’s Perspective – April 17, 2021 – An author and Rhodes Scholar challenges misguided assumptions about people with autism. Author of How to Be Human: An Autistic Man’s Guide to Life (Simon & Shuster, 2021).
  • (MA Budget Process) Massachusetts FY 2022 State Budget Process – House of Representatives Budget Version – The House Committee on Ways and Means examines the Governor’s Proposal and releases its own recommendations for the annual budget for deliberation by the House of Representatives. Prior to release of the House Ways and Means Budget, Joint Ways and Means Committee budget hearings are held across the state.

Download the Tuesday Digest 34: DAM Digest 034.docx

  • (Voluntary nursing home closures) Halcyon House, Methuen
    • Closure date: July 16, 2021
    • Public hearing: Wednesday, April 14, 2021, 6:00 p.m., Dial-in number: 888-390-5007; passcode: 7794318
    • Notice of Intent to Close and Draft Closure Plan: tinyurl.com/HalcyonClosure
  • (Voluntary nursing home closures) Agawam Healthcare
  • (Voluntary nursing home closures) Wareham Healthcare
  • (Voluntary nursing home closures) Massachusetts Department of Public Health – Information about nursing home closures
  • (Recording) AARP Home and Community-Based Services Convening Session – April 7, 2021 – Access the recording of the session: Passcode: zi@eg?1b
  • (Broadcast Report) Last Week Tonight with John Oliver – Long Term Care – April 12, 2021 – John Oliver explains the industry behind nursing homes and assisted living facilities, and why long-term care needs fixing. Penny Shaw, nursing home resident and advocate and member of Dignity Alliance Massachusetts, has a cameo appearance.
  • (Broadcast Report) Sunday Today (NBC) – Man walks Appalachian Trail after Parkinson’s diagnosis – April 11, 2021 – One piece of advice Parkinson’s disease patients often hear from their doctors is that they need to keep their bodies moving. On this World Parkinson’s Day, meet a man who is taking the advice to the extreme. “I feel like as long as I stay on top of the disease that I’m going to win. I’m not going to let Parkinson’s interrupt my journey,” Dan Schoenthal says.
  • (Report) The National Consumer Voice for Quality Long-Term Care – Successful Transitions: Reducing the Negative Impact of Nursing Home Closures – 2016
  • (Report) Center for Medicare and Medicaid Services – Minimum Data Set (MDS) 3.0 Frequency Report – The MDS 3.0 Frequency Report summarizes information for active residents currently in nursing homes. The source of these counts is the resident’s MDS assessment record. The MDS assessment information for each active nursing home resident is consolidated to create a profile of the most recent standard information for the resident.

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  • (Article) Ariadne Labs – Beyond Goal Driven Care: Autonomy, Meaning, and Belonging in Nursing Home Care – November 17, 2020 – Blog post by Dr. Rachel Broudy, Dignity Alliance MA member
  • (Article) Healthenly.org – The Dignity of Risk: Turning Elder Care into Elder Life – September 24, 2020 – Podcast by Dr. Rachel Broudy, Dignity Alliance MA member
  • (Video of Seminar) Leonard Davis Institute of Health Economics, University of Pennsylvania – Integrating Social Services into Health Care – One hour seminar March, 2021- Comprehensively addressing the social determinants of health is an ideal as well as a complex logistical puzzle for all parties involved in providing health care. The details of that quest were the subject of a virtual seminar at University of Pennsylvania’s Leonard Davis Institute of Health Economics (LDI).
  • (Report) PHI – Caring for the Future: The Power and Potential of America’s Direct Care Workforce – January 12, 2021 – The report provides a comprehensive, current-day analysis of the direct care workforce.
  • (Article) Next Avenue – The Nursing Home Vulnerabilities That Led to Disaster – March 26, 2021 – Experts say these five main factors caused the colossal failures during the pandemic:
    • Staffing
    • Funding
    • Corporate structure
    • Lack of oversight and enforcement
    • Aging Buildings
  • (Article) Next Avenue – How’d We Get Here? The History of Nursing Homes – March 5, 2021
  • (Article) Leonard Davis Institute of Health Economics, University of Pennsylvania – Policy Options for Financing Long-Term Care in the U.S. – April 15, 2020 – Unlike many other developed nations, the U.S. has no system that protects its residents against the high costs of long-term care, which many people will need as they age. Medicaid coverage kicks in only after families have exhausted their resources. Until then, families bear the financial and caregiving burden of LTC themselves. In the absence of a national system, several states have considered or passed programs that offer some support for LTC. Many peer nations have more comprehensive systems to spread the risk for LTC costs across their population, through social insurance or other mechanisms. This Issue Brief reviews international models of financing LTC, as well as recent state efforts, to help U.S. policymakers design a program that can meet the LTC challenges of an aging population.
  • (Website) New England ADA Center’s ADA – COVID-19 Webpage – People with disabilities have the right to participate in the programs, services and activities offered by municipalities, non-profit organizations, state agencies or businesses. This right of participation remains even during a pandemic, and this principle is even more critical. This website provides information about how the ADA relates to programs and services provided during the COVID-19 pandemic.
  • (Website) Institute on Disability, University of New Hampshire – Virtual Release of the 2021 Annual Disability Statistics Compendium – Virtual release of the proceedings of the four-day Annual Disability Statistics Compendium occurring on February 9-12, 2021. During this compendium, experts presented three web-based tools (Compendium, Supplement, and State Report) that make finding and using disability statistics easier for individuals working on legislative and other matters relating to persons with disabilities.
  • (Focus on Longevity) Innovation Hub – WGBH – Your State’s Politics Might Be the Death of You – March 16, 2021 – Twenty-three-minute recorded interview – Policymakers have a thumb on the scale when it comes to how long we live. Jennifer Karas Montez, a sociologist and demographer at Syracuse University, has spent her career studying the social causes of death and disease in the United States – how differing state policies have contributed to a 7-year gap between the state with the highest (Hawaii) and the lowest (West Virginia) life expectancy in the U.S. Though COVID-19 has shined a light on how different state approaches to health affect day-to-day life, even in non-pandemic times, longevity and health are deeply impacted by what’s going on at the state level. From how generous paid leave is where you live, to how easy marijuana is to access, the patchwork of policies across the U.S affect health outcomes.
  • (Focus on Longevity) CNBC – Here are the states with the longest and shortest life expectancies, according to the CDC – March 11, 2021
  • (Focus on Longevity) The Milbank Quarterly – US State Policies, Politics, and Life Expectancy – September 2020 – Policy Points:
    • Changes in US state policies since the 1970s, particularly after 2010, have played an important role in the stagnation and recent decline in US life expectancy.
    • Some US state policies appear to be key levers for improving life expectancy, such as policies on tobacco, labor, immigration, civil rights, and the environment.
    • US life expectancy is estimated to be 2.8 years longer among women and 2.1 years longer among men if all US states enjoyed the health advantages of states with more liberal policies, which would put US life expectancy on par with other high-income countries.
  • (Focus on Longevity) Insider – Life expectancy in the US keeps going down, and a new study says America’s worsening inequality could be to blame – November 30, 2019
  • (Focus on Longevity) National Institutes of Health – Healthy habits can lengthen life – May 8, 2018
    • Researchers found that people who maintained five healthy lifestyle factors lived more than a decade longer than those who did not maintain any of the five.
    • The results suggest that Americans can increase the length of their lives and lower their disease risk by adopting a healthier lifestyle.

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  • (Report) The Gerontology Institute Blog – New Report Ranks Elder Economic Insecurity in 100 Largest U.S. Metro Areas – March 12, 2021
  • (Public Policy Proposal) Executive Office of Health and Human Services – Roadmap for Behavioral Health Reform
  • (Website) The Consumer Voice – A Year of Lockdown and Loss – Through two special video presentations, Consumer Voice honors and remembers those who have died this past year and hears directly from residents and family members about their experiences during the lockdown.
  • (Article) New York Times via Yahoo News – Maggots, Rape and Yet Five Stars: How U.S. Ratings of Nursing Homes Mislead the Public – March 13, 2021 – Nursing homes have manipulated the influential star system in ways that have masked deep problems — and left them unprepared for Covid-19.
  • (Article) Politico – Nursing homes need fixing. Here’s where to start. – March 11, 2021 – The most dangerous job in America is nursing home caregiver, but a few key policy changes could make senior homes safer for everyone in the post-Covid era. Author is David Grabowski, Professor of Health Care Policy, Department of Health Care Policy, Harvard Medical School.
  • (Article) Center for Medicare and Medicaid Services – Nursing Home Visitation – March 10, 2021 – COVID-19 Revised Recommendations
  • (Recorded Webinar) Massachusetts Association for Mental Health – Working with Older Adult Trauma Survivors – Undated – Joan Cook, Ph.D., a nationally-recognized expert in geriatric traumatic stress at the Yale School of Medicine’s Department of Psychiatry, discusses the impact of trauma as a risk factor for older adult well-being and offers strategies for more effectively supporting older adults with a history of trauma.
  • (Recorded Webinar) Massachusetts Association for Mental Health – Caregiving Conversations: Reflecting on Race, Older Adults, and Implications for Behavioral Health – September 30, 2020 – 46 minutes – This webinar conversation explores answers to the question: What would it look like if we acknowledged and addressed the impact of racism and disparities in providing services to older adults? Presenters include Sandra Best Bailly, MSW (Simmons University School of Social Work), Lynda Phillips, LICSW, MA (BIO 1 Healthcare Consulting), and Emmanuelle Renelique (Awakening Excellence Adult Day Health Center).
  • (Recorded Webinar) Massachusetts Association for Mental Health – COVID: Supporting Frontline Staff and Caregivers – August 27, 2020 – 46 minutes – MA Health & Human Services Secretary Marylou Sudders kicks off MAMH’s Well Being in the Time of COVID series by acknowledging the important contributions of frontline staff and caregivers supporting people most at risk during the pandemic.
  • (Recorded Webinar) Massachusetts Association for Mental Health – Substance Use, Co-Occurring Conditions, and Older Adults – August 27, 2020 – 104 minutes – This webinar training with Karen Fortuna, Ph.D. introduces MAMH’s REACH with Older Adults approach to supporting older adults who may have problems with substance use.

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  • (Report) Manatt – COVID-19 State Resource Guide: Leveraging Federal and State Authorities to Ensure Access to LTSS – February 25, 2021
  • (Report) LeadingAge Long Term Services and Support Center – A Blueprint to Guide Research and Actions for Better Dementia Care – February 25, 2021 – A new report from the National Academies of Sciences, Engineering, and Medicine presents a framework for future research and action around dementia care.
  • (Report) Center for Consumer Engagement in Health Innovation – Tracking Progress on Person-Centered Care for Older Adults: How Are We Doing? – January 2021 – Person-centered care is essential for health systems and providers to emphasize a holistic approach oriented around individuals’ goals and preferences. Using Health and Retirement Study data, we measure if older adults experience receiving person-centered care, showing differences by race, income, and other factors, and how receiving person-centered care affects satisfaction and use. One-third of older adults report that their preferences were only rarely or sometimes taken into account with large variations by race. When preferences are ignored, older adults are more likely to forgo medical care and report lower satisfaction. New efforts are needed to strengthen and advance person-centered care, particularly for people of color and those with low incomes.
  • (Report) CMS: Center for Clinical Standards and Quality/Quality, Safety & Oversight Group – Guidance: Visitation at Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) and Psychiatric Residential Treatment Facilities
  • (Discussion Group) Long Term Care Discussion Group – The Long Term Care Discussion Group is a voluntary, independent group that meets for the purpose of educating the policy community on all facets of long term care. The group convenes monthly presentations exploring long term care policy, research, and advocacy issues. Membership is free and open to all. Participants span the entire spectrum of the long term care policy community, including federal agency and congressional staff, researchers, and representatives of a wide variety of stakeholder organizations. The new co-chair of the LTC Discussion Group is Pamela Nadash, Associate Professor of Gerontology at University of Massachusetts Boston, in the McCormack School of Policy & Global Studies and Fellow of the LeadingAge LTSS Center at UMass Boston. For more information or to be included on the distribution list, email: LTCDiscussionGroup@gmail.com.
  • (Website) Administration on Community Living – Commit to Connect
    • Resources for the aging and disability networks
    • Combating social isolation and loneliness in all communities
  • (Website) Issued by The White House – National Strategy for the Covid-19 Response and Pandemic Preparedness – January 21, 2021
  • (Article) Administration on Community Living – ACL Advocacy: Visitation in Congregate Settings – February 24, 2021

Information about the movies The Father and I Care A Lot

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  • (Report) Center for Medicare Advocacy – Geography Is Not Destiny: Protecting Nursing Home Residents from the Next Pandemic
  • (Report) Center for Social and Demographic Research on Aging Publications – Aging Strong for All: Examining Aging Equity in the City of Boston – December 2020 – The experience of being and becoming older differs substantially based on one’s race, ethnicity, and gender. In the City of Boston, it has never been more critical to strategically pursue greater equity in the aging experience of residents. According to data from the US Census Bureau, the number of Boston residents aged 60 or older increased by more than a third just since 2010 and persons of color now make up half of Boston’s older adults. As well, stakeholders share a growing recognition of the powerful ways in which inequity, racism and discrimination shape health outcomes and the aging experience, amplifying the need to scrutinize and remediate disparities in aging. The purpose of this report is to examine these intersecting trends and to document disparities experienced by older residents across three major dimensions of healthy aging: economic security, health, and social engagement. The report tells a story of inequities across the life course that together challenge the ability of many people to thrive in later life and contribute to disparities across populations.
  • Article) *New York Times – ‘We Are Going to Keep You Safe, Even if It Kills Your Spirit’ – February 19, 2021 – For the millions of Americans living with dementia, every day during this pandemic can bring a fresh horror
  • Interviews with Dr. Asif Merchant, a geriatrician and associate clinical professor at Tufts University School of Medicine. He serves on the COVID-19 Vaccine Advisory Group for the governor of Massachusetts.

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  • (Report) Kaiser Family Foundation – Vaccine Monitor: Reasons Vary Why People Want to “Wait and See” Before Getting a COVID-19 Vaccine – February 12, 2021
  • (Website) Administration on Community Living – Coronavirus Disease 2019 (COVID-19) Website – Website with timely Covid 19 information regarding older adults and persons with disabilities and extensive links.
  • (Website) Johns Hopkins Disability Health Research Center – COVID-19 Vaccine Prioritization Dashboard – This dashboard was created as a partnership between the Johns Hopkins Disability Health Research Center and the Center for Dignity in Healthcare for People with Disabilities as a starting point for understanding how each state is prioritizing the disability community in COVID-19 vaccine distribution and intends to help people with disabilities determine when they qualify for a COVID-19 vaccine in their state.
  • (Fact Sheet) Autistic Self-Advocacy Network – COVID-19 Vaccine Fact Sheet – A new COVID-19 Vaccination Fact Sheet from the Autistic Self Advocacy Network (ASAN) is available in a plain language format and in an Easy Read format with pictures, large text, and has more white space.

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  • (Report) Massachusetts Commission on Falls Prevention – Phase 3 Report: Improving Integration of Falls Risk Assessment and Referral in Health Care Practices – November 2020 – The statutory body known as the MA Commission on Falls Prevention recently completed a new report of recommendations to address older adult falls in Massachusetts that pays special attention to the important role of primary care providers. This report is now available in addition to the two previous reports, Phase 2 Report: Recommendations of the Massachusetts Commission on Falls Prevention (September 2015) and Phase 1 Report: The Current Landscape (September 2013).
  • (Report) Joint Center for Housing Studies of Harvard University – The State of the Nation’s Housing 2020 – undated
  • (Website) World Health Organization (WH0) – Ageing – Comprehensive website with these components: Factsheets; Guidelines; Databases; WHO Resolutions; WHO Teams
  • (Website) Pro Publica – Nursing Home Inspect – How Safe Are Nursing Homes Near Me? This Tool Will Help You Find Out. – Nursing Home Inspect searches through thousands of nursing home inspection reports to find problems and trends. The latest update includes data on infection control violations, and notations for facilities that have had a coronavirus case.
  • Kaiser Family Foundation – Joe Biden’s New Health Care Agenda (and CMS’s Big Role in It) – January 11, 2021 – Drew Altman, President of the Kaiser Family Foundation, discusses President-elect Biden’s potential health care agenda and suggests that the Centers for Medicare and Medicaid Services could have an expanded role and that it may be time to rename it and elevate it to a cabinet agency.
  • Center for Disease Control and Prevention – Morbidity and Mortality Weekly Report – January 8, 2021 – Rates of COVID-19 Among Residents and Staff Members in Nursing Homes — United States, May 25–November 22, 2020. Summary:
    • What is already known about this topic? – In the United States, COVID-19 among older adults living in nursing homes is associated with higher rates of severe illness and death.
    • What is added by this report? Rates of COVID-19 among nursing home residents and staff members increased during June and July 2020, and again in November. Trends in reported COVID-19 cases among nursing home residents and staff members were similar to trends in incidence of COVID-19 in surrounding communities.
    • What are the implications for public health practice? Increases in community rates might be associated with increases in nursing home COVID-19 incidence, and nursing home mitigation strategies need to include a comprehensive plan to monitor local SARS-CoV-2 transmission and minimize high-risk exposures within facilities.
  • LifePath – A Card Shower for Long-Term Care Residents – January 8, 2021 – Initiative to address isolation and loneliness of nursing home residents in Franklin County, MA undertaken by Trevor Boeding, Nursing Home Ombudsman at LifePath in Greenfield, MA, a member of Dignity Alliance Massachusetts.
  • *Washington Post – Covid-19 poses special risks to people like my brother-in-law. They need vaccines now. – January 5, 2021 – Persons with intellectual and developmental disabilities and those who care for them are at high risk during the Covid-19 pandemic. They should be given correspondingly high priority for Covid-19 vaccines.
  • NPR – All Things Considered – December Proved to Be Deadliest Month for Residents in Long-Term Care – January 4, 2021
  • Skilled Nursing News – Nursing Homes Must Change or Face Extinction After a Disastrous 2020 – January 3, 2021

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  • *The New Yorker – The Plague Year – January 4, 2021 – A detailed 40-page examination of the origin and impact of Covid-19.
  • Federal Trade Commission – Consumer Information – Stimulus payments for people, not nursing homes – January 4, 2021- The $600 is meant for the PERSON, not the place they might live. Important consumer information.
  • *New York Times – ‘Because of You Guys, I’m Stuck in My Room’ – January 1, 2021 – Residents and caregivers at senior living facilities write about life during the pandemic — and trying to stay safe while facing the challenges of long-term isolation.
  • *Wall Street Journal – Covid-19 Stalked Nursing Homes Around the World – December 31, 2020 -Government after government left frail residents vulnerable to pandemic; data review shows they accounted for over a third of fatalities in some countries
  • *New York Times – This Is Why Nursing Homes Failed So Badly – December 31, 2020 – The first coronavirus outbreak in the United States happened in a nursing home in February. Since then, it’s only gotten worse.

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2020

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  • The 19th – Pandemic restrictions may impact the nursing home vote – November 2, 2020 – National nursing home advocate and Dignity Alliance Massachusetts member, Penny Shaw, was interviewed for this article.
  • Tufts Health Plan Foundation – How Innovative Community Responses to COVID-19 Support Healthy Aging – October 28, 2020 – The research focused on six communities particularly affected by the pandemic. Four cities—Brockton, Chelsea, Lawrence and Lynn—are diverse and experienced some of the highest COVID-19 infection rates in the state; and Cape Cod and the Hilltowns regions are rural and geographically isolated communities with significant older populations.
  • (Website) Kaiser Health News – Look Up Your Hospital: Is It Being Penalized by Medicare? – November 2, 2020 – You can search by hospital name or location, look at all hospitals in a particular state and sort penalties by year. Under programs set up by the Affordable Care Act, the federal government cuts payments to hospitals that have high rates of readmissions and those with the highest numbers of infections and patient injuries. For the readmission penalties, Medicare cuts as much as 3 percent for each patient, although the average is generally much lower. The patient safety penalties cost hospitals 1 percent of Medicare payments over the federal fiscal year, which runs from October through September.

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Videos / Films:

  • Netflix – Crip Camp – A Disability Revolution – 2020 – feature film – Groundbreaking documentary, premiering at Sundance, depicts summer camp operating from the 1950’s through the 1970’s for teens with disabilities which helps build a movement, forging a new path toward greater equality. Executive producers: President Barack Obama and Michelle Obama.
  • Netflix – Deaf U – 2020 – docuseries – In this reality series, a tight-knit group of Deaf and hard of hearing students share their stories and explore life at Gallaudet University.

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  • (Website) AARP – Long-Term Services & Supports State Scorecard – The fourth edition of the LTSS State Scorecard, released in fall 2020, takes a multi-dimensional approach to measure state-level performance of LTSS systems that assist older adults, people with physical disabilities, and family caregivers. Unlike many other rankings that focus on a particular aspect of LTSS system performance, the Scorecard compares state LTSS systems across multiple dimensions, reflecting the importance and interconnectedness each has on the overall LTSS system. Open the Massachusetts scorecard pdf.
  • (Website) Institute for Healthcare Improvement (IHI) – COVID-19 Rapid Response Network for Nursing Homes – The Institute for Healthcare Improvement, with support from The John A. Hartford Foundation, offers the COVID-19 Rapid Response Network for Nursing Homes to support nursing home leadership, staff, residents, families, and communities impacted by the COVID-19 pandemic. Included is access to webinars, online and print resources, and links to relevant sites. The site requires free registration.
  • *The Boston Globe – Last Words – September 27-29, 2020 – A three-part Globe Spotlight Team series exposes the inequities that follow people in Massachusetts to their very last breaths. It is a deep examination into the uncomfortable topic of death and confronts the state’s failure to protect its most vulnerable in the early days of a historic pandemic.
  • *The Boston Globe – We need to transform the way we pay for and provide long-term care – October 2, 2020 (updated) – Letter to the Editor by Dick Moore, Dignity Alliance Massachusetts member
  • Next Avenue – 10 Things You Can Do to Support Aging with Dignity and Independence – January 2, 2020
  • Next Avenue – 10 Things Every Family Should Know About Aging with Dignity and Independence – November 9, 2020

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  1. *The Atlantic – Ageism is Making the Pandemic Worse – published March 28, 2020 – Article by Louise Aronson, geriatrician and professor of medicine, University of California, San Francisco and author of Elderhood: Redefining Aging, Transforming Medicine, and Reimaging Life
  2. Kaiser Family Foundation – Key Questions About the Impact of Coronavirus on Long-Term Care Facilities Over Time – published September 1, 2020 – Just released analysis of COVID-19 cases and deaths in long-term care facilities
  3. Kaiser Family Foundation – Overlooked and Undercounted: The Growing Impact of COVID-19 on Assisted Living Facilities – published on September 1, 2020 – Just released analysis of impact of COVID-19 within assisted living facilities
  4. Kaiser Family Foundation – State Actions to Sustain Medicaid Long-Term Services and Supports During COVID-19 – published on August 26, 2020
  5. Manatt Health – Recommendations to Strengthen the Resilience of New Jersey’s Nursing Homes in the Wake of COVID-19 – published on June 2, 2020 – Detailed PowerPoint presentation – See especially pages 13, 22-50, 53-54

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