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September 26, 2023
Inadequate nursing home staffing is not just an issue for today’s residents. Each of us may be one accident away from a nursing home. Whether we are 80 years old with a broken hip or 30 years old with a head injury, we shouldn’t have to worry that we’ll end up neglected in a nursing home too understaffed to keep us safe.
Biden’s nursing home staffing proposal is dangerously inadequate, The Hill, September 22, 2023
Transparency in physician and provider ownership is necessary to understand and address the impact of the corporate transformation of the U.S. health care system. Who owns a doctor’s practice, hospital, or nursing home can dramatically affect the cost, accessibility, affordability, and quality of the services. Yet the chain of corporate ownership and web of financial interests are almost totally opaque to patients, purchasers, policymakers, researchers, and regulators.
The Missing Piece in Health Care Transparency: Ownership Transparency, Health Affairs, September 22, 2023
Lack of ownership transparency allows health care consolidation to intensify unchecked, with corresponding increases in prices. Opacity in ownership obscures the pattern of stealth consolidation through which a single acquirer may monopolize a local market through add-on acquisitions. . .
To achieve true transparency in health care, it is essential to disclose who owns and controls health care facilities, physicians, and other providers. Ownership transparency can help prevent conflicts of interest, enhance accountability, promote competition, and must be seen as a complementary measure to price and location transparency to achieve the overarching goal of lowering health care costs
The Missing Piece in Health Care Transparency: Ownership Transparency, Health Affairs, September 22, 2023
A recent study found that more cancer patients died of Covid during the Omicron surge than in the first winter wave, in part because people around them had stopped taking precautions.
In hospitals, viruses are everywhere. Masks are not. *New York Times, September 23, 2023 (updated)
“Alzheimer’s disease has crushed Marti’s memory. At this stage, she cannot form a word. But somehow the pathway to musical melodies remains clear and it is along this pathway that she and I are able to communicate.”
Still there: Alzheimer’s has ravaged his mother’s memory, but music brings her back, NPR News, September 21, 2023
By 2034, a little over a decade from now, the United States will have more seniors than youth for the first time in its history. By just a year later, those of us aged 85 and older will have nearly doubled, in a span of just 25 years, to almost 12 million. And by 2050, the population of centenarians — those who live to 100 or older — will swell to 3.7 million, more than everyone now living in Connecticut.
The number of Americans living to 100 is exploding. But there’s a glaring problem. *Boston Globe, September 18, 2023 (Updated)
After I reset my iPhone, I noted that it automatically came preloaded with an app for stocks. Pressing on this app shows data on the Dow Jones average and various stocks. If we can have an app for stocks, we certainly should have an app to prevent suicide.
Every smartphone should have an app to connect to 988, the mental health crisis line, STAT News, September 22, 2023
“We just want our happily ever after.”
Julia Simko, 33,who hopes to marry Ray Vercruysse, 35, who both live with developmental disabilities, For Disabled Couples, a Plea for Marriage Equality, New York Times (free access), September 15, 2023
“However, in order to make sure the proposed rule has this intended effect, we must also address the severe staffing shortages my investigation uncovered at state nursing home survey agencies across our Nation.”
Senate Committee on Aging Chair Bob Casey (D-Pa.), Nursing home inspector shortage could undermine staffing proposal, Axios, September 7, 2023
September 19, 2023
All this talk of age — Biden is only eight years older than I am — has put more pressure on senior citizens to look and act youthful, but I’m not sitting at home waiting for my library books to be delivered — I’m still working.”
Annie Blatz, 72, a sales manager with Kinlin Grover Compass and a past president of the Cape Cod & Islands Association of Realtors, The real grandparents of Washington, D.C.: The reality show no one wants, Boston Globe, September 16, 2023 (updated)
In short, money spent on implementing work requirements could be better spent on investments in the direct care workforce and improving the quality of their jobs rather than on efforts to take direct care workers’ health insurance away.
Medicaid Work Requirements Will Harm Direct Care Workers, PHI, August 17, 2023
“The largest decline in purpose in life occurred following onset of cognitive impairment. . . Purpose can be increased through engagement in goal-directed activities among individuals with dementia.”
Lack of purpose in life linked to cognitive decline, study finds,
McKnight’s Long-Term Care News, September 18, 2023
“Insurers are, in effect, denying Americans necessary care in order to fatten and pad their bottom lines, and that phenomenon is unacceptable. I want to put these companies on notice. If you deny life-saving coverage to seniors, we are watching, we will expose you, we will demand better, we will pass legislation if necessary.”
Senator Richard Blumenthal (D-CT), ‘Impossible’ Medicare Advantage denials decried during Senate hearing,, Mcknight’s Long-Term Care News, May 18, 2023
It is time to finish the revolution. Mandating developmental disability services in adulthood and investing in home- and community-based care are not optional. Accessing employment in adulthood is as necessary as accessing education in childhood—and arguably more valuable.
A Broken Employment System Leaves Autistic Adults Stranded, Scientific American, September 13, 2023
“We call this the dignity of failure – a place where mistakes can be made; where mistakes are even welcomed.”
Tom D’Eri, owner, Rising Tide Car Wash in Florida, Car Wash Empowers Autistic Employees with a Sense of Self Worth, Sunday Today (NBC Video), September 17, 2023
September 11, 2023
“Establishing minimum staffing standards for nursing homes will improve resident safety and promote high-quality care so residents and their families can have peace of mind. When facilities are understaffed, residents suffer. They might be unable to use the bathroom, shower, maintain hygiene, change clothes, get out of bed, or have someone respond to their call for assistance. Comprehensive staffing reforms can improve working conditions, leading to higher wages and better retention for this dedicated workforce.”
Health and Human Services Secretary Xavier Becerra, HHS Proposes Minimum Staffing Standards to Enhance Safety and Quality in Nursing Homes, Centers for Medicare and Medicaid Services, September 1, 2023, HHS Minimum Staffing Standards
“Today, we took an important first step to propose new staffing requirements that will hold nursing homes accountable and make sure that residents get the safe, high-quality care that they deserve.”
Chiquita Brooks-LaSure, Center for Medicare and Medicaid Services, HHS Proposes Minimum Staffing Standards to Enhance Safety and Quality in Nursing Homes, Centers for Medicare and Medicaid Services, September 1, 2023, HHS Minimum Staffing Standards
In a long-awaited and highly controversial decision, the federal Centers for Medicare and Medicaid Services (CMS) has proposed that nursing homes provide at least three hours of staff time daily for every patient or resident.
Would it meaningfully improve care at nursing facilities? Not by much.
What New Nursing Home Staffing Rules Would Mean For Residents And Patients, Forbes, September 5, 2023, What New Rules Mean
CMS “sabotaged” the push for sufficiently high staffing through the instructions it gave its contractor. “Every threshold they looked at was below 4.1. How can that possibly be a decent study? It’s just unacceptable.”
Charlene Harrington, professor emeritus of nursing at the University of California-San Francisco, CMS Study Sabotages Efforts to Bolster Nursing Home Staffing, Advocates Say, KFF Health News, August 29, 2023, CMS Study Sabotages
“Fundamentally, this standard is wholly inadequate to meet the needs of nursing home residents.”
Richard Mollot, executive director of the Long Term Care Community Coalition, Biden Administration Proposes New Standards to Boost Nursing Home Staffing, KKF Health News and New York Times (free access), September 1, 2023, Boost Nursing Home Staffing Standards
“The standards are a lot lower than what a lot of experts, including myself, have called for over the year. There are some real positives in here, but I wish the administration had gone further.”
David Grabowski, a professor of health care policy at Harvard Medical School, Biden Administration Proposes New Standards to Boost Nursing Home Staffing, KKF Health News and New York Times (free access), September 1, 2023, Boost Nursing Home Staffing Standards
In 2020 the share of people 65 or older reached 17 percent, according to the Census Bureau. By 2034, there will be more Americans past retirement age than there are children.
The challenge the country faces transcends ideology, geography and ethnic or racial category, and American leaders, regardless of their party, need to confront it with the appropriate urgency.
Editorial Board, An Aging America Needs An Honest Conversation about Growing Old, New York Times (free access), September 10, 2023, Aging America
Many older people in the United States say they feel invisible in a country that has long been obsessed with youth, avoiding the inevitability — and possibilities — of old age. Americans of every generation owe it to themselves and their families to begin asking the question: Is this a challenge we want to handle on our own? Or is it something that we as a society should confront together?
Editorial Board, An Aging America Needs An Honest Conversation about Growing Old, New York Times (free access), September 10, 2023, Aging America
“Furthermore, our findings may also incentivize government investment in preventative health care and health promotion given the greater cost associated with caring for people in institutions. This will require a shift in health policy towards preventative health.”
Alice A. Gibson, BSc, APD, PhD, a research fellow at the University of Sydney in Australia, and colleagues, Unhealthy lifestyle factors associated with increased risk nursing home admission, Healio, September 1, 2023, Increased Risk of Nursing Home Admissions
For many of us, leaving our homes and navigating the outside world doesn’t require much effort. But for older adults, our towns and cities are filled with obstacles — stairs, unsafe sidewalks and crossings, inadequate lighting — that grow increasingly difficult for them as they age. On top of that, most American cities lack robust public transportation. These challenges combine to keep many older Americans at home, isolated from social and cultural activities that are proven to keep conditions like dementia at bay, from essential medical care, from the world around them.
The City Looks Different When You’re Older, New York Times (free access), September 8, 2023, Different When You Are Older
Enacting elder parole bills, which do not guarantee release based on age but rather allow older adults to be individually considered for release by a parole board, can help resolve the crisis of aging behind bars, save substantial money, and return people to the community to repair the harm they long ago caused — before they are on death’s doorstep.
Carol Shapiro, New York, Compassionate Release for Those Aging Behind Bars, *New York Times, August 21, 2023, Compassionate Release
Compassionate release laws at the state and federal levels should make dementia an explicit criterion for early release. Facilities should also screen older patients for dementia on a regular basis and develop protocols for requesting compassionate release and expediting placement in memory care facilities. The U.S. prison population is aging and change is urgently needed.
Caitlin Farrell, Nicole Mushero, William Weber, physicians volunteering with the Medical Justice Alliance, Compassionate Release for Those Aging Behind Bars, *New York Times, August 21, 2023, Compassionate Release
“When you give increased odds to people who may be more impacted by a disease, you are not putting any one group in front of the other, you are weighting the odds to makes sure no one group is being left behind.”
Erin McCreary, director of infectious diseases improvement and clinical research innovation at the University of Pennsylvania Medical Center, How a ‘weighted lottery’ helped underserved patients get a scarce Covid drug, STAT News, September 1, 2023, Weighted Lottery
“I thought you, like, forgot where you parked your car. I didn’t think you forgot how to walk, how to eat, how to breathe eventually and I didn’t realize essentially how someone in the throes of dementia required 24 hours a day, seven days a week care and supervision.”
Seth Rogen commenting on how debilitating Alzheimer’s is, How Seth Rogen and Lauren Miller Rogen are using comedy to support Alzheimer’s care, STAT News, September 8, 2023, Seth Rogen
“The experience of navigating these illnesses affects the entire family … it was given to Brian as a death sentence, and to me, frankly, it felt like imprisonment. Brian’s caregiving costs upwards of $300,000 a year, out of pocket, no insurance coverage, and the only way we’ve been able to manage it is by friends and family pitching in.”
Sandra Abrevaya, wife of Brian Wallach who has amyotrophic lateral sclerosis (ALS), ALS advocates say criticism of new drugs misses bigger picture, STAT News, September 8, 2023, ALS Advocates
What does a 48-year-old woman look like now? Are 82-year-olds all supposed to look like recent Sports Illustrated Swimsuit cover model Martha Stewart? And what about being in your late 20s or early 30s, when your face begins to look more adult? What does “more adult” mean when anyone can pay to give themselves the smooth, immobile face of the moment?
In other words: What does it look like to age?
What aging looks like now, *Washington Post, August 29, 2023, What Aging Looks Like Now
“I think aging is a beautiful thing,” she said. “I think if you’re not aging, you’re dead. The goal is to age as beautifully as you want to, for yourself.”
Shereene Idriss, a New York-based dermatologist, What aging looks like now, *Washington Post, August 29, 2023, What Aging Looks Like Now
After all, in 1926, when [Elaine] LaLanne was born, few Americans made exercising a part of their daily lives. Nearly a century later, Ms. LaLanne is a “testament to the efficacy of a lifelong exercise habit” — and perhaps even more important, the power of choosing how you want older age to look and feel.
Shelly McKenzie, an independent scholar and the author of “Getting Physical: The Rise of Fitness Culture in America.” At 97, the First Lady of Fitness Is Still Shaping the Industry, *New York Times, September 6, 2023 (Updated), First Lady of Fitness
“You have to move. If you don’t move, you become immovable.”
Elaine LaLanne At 97, the First Lady of Fitness Is Still Shaping the Industry, *New York Times, September 6, 2023 (Updated), First Lady of Fitness
“There’s almost no organ system long Covid doesn’t touch.”
Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine, Long Covid Poses Special Challenges for Seniors, New York Times, September 3, 2023, Special Challenges for Seniors
“The current framework for disasters centers on the quantifiable damage to physical infrastructure and its corresponding economic costs. This emphasis, unfortunately, neglects the human impacts, an omission that is particularly troubling regarding extreme heat.”
Jordan Clark, who studies federal heat policy at Duke University’s heat policy innovation hub, A harrowing summer’: extreme weather costs hit US as 60m under heat alerts, The Guardian, September 6, 2023, Harrowing Summer
Dignified home care, i.e., work that pays a living wage and takes into account the well-being and agency of both the care worker as well as the clients who receive care—is a powerful multi-solver in the movement for well-being, equity, and racial justice.
Healing Home Care: How Shared Stewardship Can Amplify the Dignity of Home Care Work, The Rippel Foundation, Undated, Read the Healing Home Care Blog
“It’s unacceptable that some nursing homes do not provide a full public accounting of who their medical director is. Our bipartisan bill will rectify that and require transparency that families need to have faith in their nursing homes.”
Representative Mike Levin (D-CA), Rep. Levin’s First Legislation of the 118th Congress Would Improve Public Disclosure of Medical Directors, Office of Mike Levin, January 10, 2023, Public Disclosure of Medical Directors
Climate change threatens our health by producing extreme weather events, increasing the prevalence of communicable disease, and jeopardizing our access to food, fresh water, and clean air. Research shows that older adults are particularly susceptible to the health impacts of climate change. . .
Because of the normal changes that come with aging, older adults are more vulnerable to heat illnesses, which occur when the body is exposed to high temperatures and cannot cool itself. Preexisting medical conditions, such diabetes or heart disease, increase the chances an older adult will have a negative reaction when exposed to high temperatures.
Effects of Climate Change on Older Adults, Aging and Climate Change Clearinghouse – Cornell University
Approximately 40% of all inpatient operations are performed on patients aged 65 years and older, and nearly one-third of older Americans face surgery in their last year of life. Compared with younger people, older adults are at a higher risk of postoperative mortality and complications due to decreased physiological reserve and diverse factors that contribute to frailty.
Racial disparities in inpatient palliative care consultation among frail older patients undergoing high-risk elective surgical procedures in the United States: a cross-sectional study of the national inpatient sample, Scholar, July 13, 2023, Racial Disparities Among Frail Older Adults
What’s needed is a new kind of “neighborhood watch,” where neighbors make deliberate efforts to get to know each other – not just for a friendly wave across the fence or from one door to the next. . . If I know my neighbor does not have family nearby or is in need of insulin, I can be a better neighbor in an emergency.
Nobody should be facing the climate crisis alone; Unfortunately, the elderly are often alone and vulnerable, CommonWealth, August 28, 2023, Facing Climate Crisis Alone
Unfortunately, people over 65 also include the highest percentage of those who do not want to accept the scientific consensus on climate change. It’s high time, therefore, for grandchildren to sit down their grandparents and have “the talk.”
Nobody should be facing the climate crisis alone; Unfortunately, the elderly are often alone and vulnerable, CommonWealth, August 28, 2023, Facing Climate Crisis Alone
August 28, 2023
It is only fitting that a man who has built homes for so many others would return to his own home as he sees his time growing short. And when his time in hospice draws to a close, there is likely to be no medical team rushing in, no chest compressions or shocks. There will be only a final breath, and then there will be quiet.
Dr. Daniela Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital commenting about Jimmy Carter and his hospice care, A Fitting Final Gift From Jimmy Carter, *The New York Times, August 28, 2023, Fitting Final Gift
Lavender [Darcangelo]’s story isn’t just a heartwarming tale; it is an important story. It shows us all that we should embrace the differences we have and not always worry about what people may think of our differences. If fact, it is our differences that make life interesting and worth living. Lavender’s goal is to show people that there are many different ways to live a happy and successful life.
Lavender Darcangelo A Blind And Autistic Singer From Fitchburg, Massachusetts, The Music Man (text with video), August 23, 2023 [Editor’s note: Lavender is currently a finalist competing on NBC’s America’s Got Talent)]
“Despite hearing and sight issues (age related) the dog had a healthy appetite for food and human company and had a lovely friendly temperament. On assessment we realized that this dog could still have a good quality of life in the right environment
Helen Hewett, the manager of Carrick Dog Shelter, Tears As Elderly Dog, 21, Abandoned at Shelter by Owner for Being ‘Too Old’, Newsweek, August 24, 2023, Elderly Dog
“I think the new approach [regarding masking mandates] is we want to make that information available to the public and give people some warning that there may be some increases in disease activity [a]nd then people decide for themselves sort of how they want to react and what kind of precautions they want to take.
Dr. Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials (ASTHO), Mask mandates reemerge amid upturn in COVID-19 cases, The Hill, August 24, 2023, Mask Mandates Remerge
Rural communities embody a unique way of life that appeals to many, and many have inherent strengths. However, the challenges confronting rural communities, including workforce shortages, healthcare inequities, and support system inadequacies, cannot be ignored.
Ensuring Age-Friendly Public Health in Rural Communities: Challenges, Opportunities, and Model Programs, Trust for America’s Health and Age-Friendly Public Health Systems, August 23, 2023, Age Friendly in Rural Communities
“The number of state prisoners age 55 and older has increased by 400 percent from 1993 to 2013, and it is predicted that by 2030, this age group will account for one-third of the US prison population. . . As the US population ages and rates of dementia increase, the prevalence of dementia among those involved in the criminal legal system can also be expected to increase.”
according to a 2022 report by the American Bar Association.Graying of Massachusetts prisons cries out for a dose of compassion, *The Boston Globe, The Editorial Board, August 27, 2023 (updated), Graying of Massachusetts Prisons
“People linger in [state prisons] without an advocate, when they have every right to be out on medical parole.”
Ada Lin, an attorney at Prisoners’ Legal Services of Massachusetts, Graying of Massachusetts prisons cries out for a dose of compassion, *The Boston Globe, The Editorial Board, August 27, 2023 (updated), Graying of Massachusetts Prisons
Racially and ethnically minoritized populations and tribal communities often face preventable inequities in health outcomes due to structural disadvantages and diminished opportunities around health care, employment, education, and more.
Review of Federal Policies that Contribute to Racial and Ethnic Health Inequities, National Academies, 2023, Racial and Ethnic Health Inequities
“On this first anniversary of the Inflation Reduction Act, Americans are seeing the benefits – such as free recommended vaccines, lower insulin costs, and the enhanced tax credits that help more people afford their premiums in the Marketplaces.”
Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure, On the First Anniversary of the Inflation Reduction Act, Millions of Medicare Enrollees See Savings on Health Care Costs, U. S. Department of Health and Human Services, August 16, 2023, Anniversary Inflation Reduction Act
Many Medicaid enrollees, including older adults, are also confused by the unwinding process and their eligibility for Medicaid or transitioning to Medicare, Marketplace, or employment-based insurance.
Unwinding of the Medicaid continuous eligibility requirements that were put in place during the COVID-19 Public Health Emergency (PHE) continues to impact Medicaid enrollees across states., Justice in Aging, Undated, Unwinding of Medicaid
Older women of color ages 50 and over were overrepresented among essential workers and disproportionately provided caregiving.
Issue Brief: The Economic Security and Health of Older Women of Color, Justice in Aging, July 12, 2023, Economic and Health Security of Older Women of Color
“Strategies to improve lifestyle factors, including smoking cessation, reducing sitting time, increasing physical activity and improving sleep, should be explored as new public health measures to help reduce the future risk of nursing home admission.”
People over 60s with the unhealthiest lifestyles more likely to require nursing home admission, News-Medical.net, August 24, 2023, Unhealthiest Lifestyles
“The extent of older persons actually believing themselves to be inferior from others because of their age is staggering.”
Marvin Formosa, associate professor of gerontology at the University of Malta, Negative thoughts about aging can be harmful. Here’s how to reduce them. *Washington Post, August 17, 2023, Negative Thoughts about Aging
“People with dementia can be very emotionally sensitive and they can pick up on that presence. Just because someone’s linear rationality is compromised that doesn’t mean their consciousness is.”
Stephen G. Post, a bioethicist at Stony Brook University, an expert in compassionate care, and author of “Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease.” To ease my depression, I volunteered to help dying people, *Washington Post, August 15, 2023, Volunteered to Help Dying People
In a study presented at the annual meeting of the American Society for Nutrition, researchers found that men who had adopted all eight habits by middle age lived 24 years longer than men whose lifestyle included few or none of the habits. Women’s life expectancy increased by 23 years for those who had adopted the eight habits compared with women who had not.
Adopting 8 therapeutic habits can add decades to your life, study says, *Washington Post, August 21, 2023, 8 Therapeutic Habits
“Aging has excited the imagination throughout the history of humankind, but it’s only recently that it has been subjected to profound scientific scrutiny.”
Carlos Lopez-Otin, a biochemist at the University of Oviedo in Spain and co-author a hallmark paper on the aging process, How We Age—and How Scientists Are Working to Turn Back the Clock, *The Wall Street Journal, August 26, 2023, How We Age
Who lives in America today?
Because of the government’s outdated standards for data collection, we don’t really have an accurate picture.
America Needs Better Data on Race and Ethnicity, Center for American Progress, June 11, 2023, Better Data
In the United States and around the world, extreme heat is becoming increasingly common and more dangerous. The acute damage produced by extreme heat events and the ripple effects of chronic heat exposure have broad implications, among them an increase in heat-related illnesses and heightened demand for health care services.
The Health Care Costs of Extreme Heat, Center for American Progress, June 27, 2023, Health Care Costs of Extreme Heat
“The response community is just maxed out [regarding extreme heat], there aren’t a lot of additional resources available. The summer should be a wake-up call because our systems and infrastructure are built on assumptions made in the 1950s and 1960s that just don’t exist now. We need a major rethink and need to start planning for worse to come, rather than just responding.”
Jim Whittington, an expert on incident management at Oregon State University, After America’s summer of extreme weather, ‘next year may well be worse’, The Guardian, August 26, 2023, Next year may be worse
“This is just the result of poor policymaking. I think that vaccines, all vaccines, should be accessible in all settings of care, and so this fragmentation is really just not good.”
Richard Hughes IV, a vaccine-law expert at the firm Epstein Becker Green and the former vice president of public policy at Moderna. Commenting on the lack of a universal mandate for the R.S.V. vaccination, Some Older Adults Are Being Charged Over $300 for the New R.S.V. Vaccine, *New York Times,
August 25, 2023, New R.S.V. Vaccine
“Electronic visit verification is the equivalent of putting an ankle monitor on people with disabilities and telling us where we can and can’t go. It turns having a disability into a crime.”
Disabled travel blogger Karen Wilson, The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients, Slate, July 26, 2023, Vast Surveillance Network
It belongs to all of us, as does the responsibility for solving it. The cycle of shutdowns of Boston’s tent city has sent some of the unhoused there into the suburbs. Meanwhile, many of those remaining on Mass and Cass hail from places like Essex County.
Editorial, Homelessness, a shared problem, needs a universal solution, Salem News, August 28, 2023, Homelessness a Shared Problem
“A lot of people think, ‘I got covid, I got over it and I’m fine,’ and it’s a nothingburger for them. But that’s not everything.” After a couple of years, “maybe you’ve forgotten about the SARS-CoV-2 infection … but covid did not forget about you. It’s still wreaking havoc in your body.”
Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine in St. Louis and chief of research at the Veterans Affairs St. Louis Health Care System, Many long-covid symptoms linger even after two years, new study shows, The Washington Post (free access), August 21, 2023
Data also show that pedestrians over 55 on average had a death rate two times higher than younger age groups.
Record 101 Pedestrians Died on Roads In 2022, State House News, July 18, 2023, Pedestrians Died
August 21, 2023
“I kept waiting for the cavalry to come, and it really hasn’t, even today. At no time during the pandemic did we prioritize nursing homes.”
Dr. David Grabowski, a health care policy researcher at Harvard Medical School, How Nursing Homes Failed to Protect Residents From Covid, New York Times (free access), August 19, 2023, Nursing Homes Failed to Protect
Some long-proposed changes could help protect residents and staff from future pandemics. Facilities could improve their ventilation systems. They could abandon “semiprivate” rooms for private ones. Dividing buildings into smaller units with consistently assigned staff — an approach pioneered by the Green House Project — would both bolster relationships and reduce residents’ exposure to infection from workers coming and going.
How Nursing Homes Failed to Protect Residents From Covid, New York Times (free access), August 19, 2023, Nursing Homes Failed to Protect
“ [Medical] debt is not a morality issue.”
Dr. Donald Berwick, IHI Senior Fellow, The Crisis of Medical Debt in the US, Institute for Healthcare Improvement, August 3, 2023, Crisis of Medical Debt
Over 100 million individuals in the US have health care debt. It disproportionately affects historically and currently marginalized groups and can infiltrate all aspects of an individual’s life.
The Crisis of Medical Debt in the US, Institute for Healthcare Improvement, August 3, 2023, Crisis of Medical Debt
“[At the onset of the Covid pandemic,] many hospitals in New York were at a point of having to ration dialysis care to patients with acute kidney injury, nobody was adequately prepared for the volume of need that erupted.”
Dr. Jeffrey Silberzweig, chief medical officer of the Rogosin Institute in New York and chair of the Emergency Partnership Initiative at the American Society for Nephrology, Kidney doctors push to protect patients by including dialysis machines in emergency stockpile, STAT News, August 7, 2023, Dialysis Machines In Emergency Stockpiles
“In a sense, the rest of society has gone back to work, school, and activities in their lives, and then people with these higher support needs… they’re kind of stuck in conditions that are close to COVID-like quarantine.”
Hilliary Dunn Stanisz, the Disability Law Center, Thousands with complicated disabilities languish as Massachusetts struggles with staff shortages at care programs, *Boston Globe, August 8, 2023, Complicated Disabilities
“Every night, I come downstairs and cry for what he’s lost, what I’ve lost. That our lives are just so different.”
Betsy Bourne, mother of 37-year-old Tyler Bourne who was born with a rare chromosomal disorder that caused profound developmental disabilities, Thousands with complicated disabilities languish as Massachusetts struggles with staff shortages at care programs, *Boston Globe, August 8, 2023, Complicated Disabilities
Now researchers believe wildfire smoke may impact the brain too. Scientists found that people living in areas with high levels of fine particulate matter, or PM2.5, could have a greater risk of developing dementia in their late stage of life.
Long-term exposure to particulates from wildfire smoke linked to dementia risk, new study finds, STAT News, August 14, 2023, Wildfire Smoke Linked to Dementia
As strange as it seems, I know my experience isn’t unique. 1 in 6 means that 1.6 billion people have to navigate the world in a disabled body – visible, or invisible, or somewhere in between. And that? That doesn’t feel as lonely.
Cheyenne Smith, I’ve been disabled my entire life. But only strangers can tell. The Washington Post (free access), August 20, 2023
“She also did a lot of walking, so maybe that explains some of her longevity. Her life was always pretty simple: early to bed, early to rise, work hard, then come home and make a nutritious meal and be with family.”
Ethel Harrison, age 68, granddaughter of 114 year-old Elizabeth Francis, At age 114, here’s her advice: ‘Speak your mind and don’t hold your tongue’, *The Washington Post, August 18, 2023, At age 114
“I asked for her advice, and she said, ‘Speak your mind and don’t hold your tongue’. She also told me, ‘If the Lord gave it to you, use it.’”
Ethel Harrison, age 68, granddaughter of 114 year-old Elizabeth Francis, At age 114, here’s her advice: ‘Speak your mind and don’t hold your tongue’, *The Washington Post, August 18, 2023, At age 114
Gardening helped me normalize the fact that I have needs and that’s okay. I don’t think my plant is a burden because it needs more nutrients. I don’t fault it for getting bugs and not being able to fight against it.
Amanda Morris, Gardening changed how I see myself as a disabled woman, The Washington Post (free access), August 20, 2023
“If you look at the brains of people with Alzheimer’s disease and Parkinson’s, you find higher concentrations of these toxic metals: lead, iron from brake pads, platinum from catalytic converters. They are probably bypassing the blood-brain barrier. The nose may be the front door in exploiting the normal protective mechanisms of the brain.
Ray Dorsey, professor of neurology at the University of Rochester, After the blaze, coping with ‘fire brain’, *The Washington Post, August 20, 2023, Fire Brain
There were 80,000 people 100 years old or older living in the U.S. in 2020, according to the U.S. Census Bureau. The agency doesn’t have a separate category for Americans who are 110 or older, but one of its previous reports estimated they make up 0.6% of the centenarian population, which would translate into 480 supercentenarians living in the U.S.
Texas woman, 114, the 2nd oldest in the US, shares simple tips for a long life, Today Show, August 16, 2023, Second Oldest
“We must have outrage, but we must have optimism as well.”
David Lammy, agenda-setter for racial and social justice, How to be a leader for climate justice, Ted Talks, July 2023
“Where’s the help for them?”
Clifford Abihai, whose 97-year-old grandmother, Louise Abihai, is still listed as missing, It was an oasis for Maui elders. The fire brought terror and death. *Boston Globe, August 19, 2023 (Updated), Maui Elders
Even dogs have it better than some held in our prisons and jails, which can be like kilns in the summer, sickening those inside and making conditions dangerous for everybody.
Where there is no escape from the heat, *Boston Globe, August 19, 2023 (updated), No Escape from the Heat
In 2011, researchers Ann Williams and Shirley Moore proposed the Universal Design of Research as a way to “design research so that all people can be included as potential participants, to the greatest extent possible, without the need for adaptation or specialized design.”
The definition of clinical trial diversity must include disabled people, STAT News, August 17, 2023, Clinical Trial Diversity
“It’s good that state regulators are still encouraging vaccination. It will protect residents’ lives, but this [proposed] policy leaves some pretty big loopholes that you can drive a truck through.”
David Grabowski, professor of health care policy at Harvard Medical School, commenting on the Department of Public Health’s vaccination proposal which allows for many exemptions, Proposed COVID and flu vaccination rules for health workers allow many exceptions, *Boston Globe, August 10, 2023 (Updated), Proposed Vaccination Policy
“Vaccination rates of health care personnel could significantly decrease, increasing infection risk for patients and staff.”
Massachusetts Health & Hospital Association, in a recent letter to the state Health Department expressing concern regarding proposed vaccination regulations, Proposed COVID and flu vaccination rules for health workers allow many exceptions, *Boston Globe, August 10, 2023 (Updated), Proposed Vaccination Policy
“I had to leave a dentist because the building is not ADA compliant. There is a 24-inch step to get into the office. I couldn’t believe it in this day in age.”
Vivian Quint, an 89-year-old Pocasset resident who uses a walker, After Senator Duckworth shared she couldn’t access theatre, Mass. residents with disabilities say problems persist here too, *Boston Globe, August 2, 2023 (Updated)
“By creating [the Elder Justice] Unit, we are prioritizing the rights of elderly residents to live with dignity – free from abuse, neglect, and exploitation.”
Attorney General Andrea Campbell, AG Campbell Announces Mary Freeley As Director Of Elder Justice Unit, Office of the Attorney General, August 18, 2023, Elder Justice Unit
August 15, 2023
“Four or five to a room is not care with dignity. Many of these men and women had not been four or five to a room since basic training. Separate even from concerns about infection control, it’s about dignity.”
State Senator John Velis, a veteran who represents Holyoke and chairs the Joint Committee on Veterans and Federal Affairs, State Breaks Ground on New Veterans Home in Holyoke, State House News, August 14, 2023, New Veterans Home Holyoke
“Viewing disability through a social lens also meant acknowledging that a person is more disabled by their environment and the discrimination of others than their actual disability.”
Jessica Smith, How I Came to Love My Bionic Hand, Time, August 14, 2023, My Bionic Hand
It is ironic that nursing home reform commissions and congressional hearings have ignored the plight of workers while extensively noodling with the industry over ever more complicated billing systems.
NAFTA & Nursing Home Wages in the Rio Grande Valley, Tallgrass Economics, August 12, 2023, NAFTA & Nursing Home Wages
[A] few of the medical staff members told me that they previously worked in community nursing homes and that the [Memory Disorder Unit] prisoners are probably receiving better care than they would on the outside, in whatever Medicaid-subsidized beds they were likely to find themselves.
I’ve Reported on Dementia for Years, and One Image of a Prisoner Keeps Haunting Me, New York Times (free access), August 11, 2023, Image of a Prisoner
“It’s not like we are deep in a [Covid] wave. It’s just heading in a direction that’s making us pay closer attention.”
Caitlin Rivers, an epidemiologist at the Johns Hopkins Center for Health Security, An Unwelcome Visitor Returns This Summer. Hint: It’s Covid. *Wall Street Journal, July 31, 2023, Unwelcome Visitor
The largest increases [in suicide] were seen in older adults. Deaths rose nearly 7% in people ages 45 to 64, and more than 8% in people 65 and older.
US suicides hit an all-time high last year, AP News, April 11, 2023, Suicides All Time High
Like senior citizens outside prison walls, older individuals in prison are more likely to experience dementia, impaired mobility, and loss of hearing and vision. In prisons, these ailments present special challenges and can necessitate increased staffing levels and enhanced officer training to accommodate those who have difficulty complying with orders from correctional officers. They can also require structural accessibility adaptations, such as special housing and wheelchair ramps.
Aging Prison Populations Drive Up Costs, Pew, February 20, 2018, Aging Prison Populations
Writing this list revealed to me the variety of ways I determine how really accessible places are — I usually just do it and don’t often think about it. It reinforced what I already know; that the onus of responsibility is typically on the person with the disability to take the initiative of determining accessibility. Writing and seeing this list in black and white, stirred up a lot of emotions – frustrated, angry, exhausted – about the contortions that I and others with disabilities go through to participate in community life. These contortions sap our precious emotional and physical energy, which could be, and should be, used in more life-enhancing ways.
Marianne DiBlasi, 9 ways that I determine accessibility, Disability Issues, Vol. 43, No. 3, Summer 2023, Disability Issues Vol. 43, No. 3, Summer 2023
“The lie of Michael’s adoption is one upon which Co-Conservators Leigh Anne Tuohy and Sean Tuohy have enriched themselves at the expense of their Ward, the undersigned Michael Oher, [retired NFL star].”
14-page petition, filed in Shelby County, Tennessee, probate court, ‘Blind Side’ subject Oher alleges Tuohys made millions off lie, ESPN, August 14, 2023, Blind Side
The [Carney] hospital had a reputation for providing great care to Irish Catholics and not particularly good care to the Black and brown people who live in those communities now, and they painted the family medicine program as the cornerstone of an effort to rehabilitate this reputation. They said they were going to bring back inpatient pediatric care—they even had these big characters painted on the wall of what was supposed to be the peds unit—and they were going to have labor and delivery. When I interviewed, they made it seem like there was a lot of stuff that was still getting worked out because it was so new.
By the time I moved to Boston, it was just clear that none of it was happening at all. The hospital was owned by the same private equity firm that owned the manufacturer of the AR-15, and they had no interest in restoring community hospitals.
Stephanie Arnold, MD, My Life in Corporate Medicine, The American Prospect, July 31, 2023, My Life in Corporate Medicine
August 7, 2023
“[A]ccess intimacy” [is] an idea that reorients our approach from one where disabled people are expected to squeeze into able-bodied people’s world, and instead calls upon able-bodied people to inhabit our world.”
Disability-justice educator Mia Mingus, I Have a Choice to Make About My Blindness, *New York Times, August 5, 2023, About My Blindness
“To be blunt about it, the people most impacted by heat are not the kind of voting demographic that gets any politician nervous. They’re unsheltered people, poor people, agricultural and construction workers. People like Sebastian Perez are just seen as expendable. They’re not seen as humans who need to be protected. Racism is absolutely central to the government’s failure to protect vulnerable people.”
Jeff Goodell, author of The Heat Will Kill You First: Life and Death on a Scorched Planet, Racism at heart of US failure to tackle deadly heatwaves, expert warns, The Guardian, August 6, 2023, Racism at Heart
“Bathing, cooking, lifting, and moving him, cleaning him. It’s all physical. It’s a lot of sweat.”
Tony Hedgepeth, a home health aide in Richmond, VA, Heat Is Costing the U.S. Economy Billions in Lost Productivity, *New York Times, July 31, 2023, Heat Is Costing
“The truth is that the changes required probably will be very costly, and they will get passed on to employers and consumers, but if we don’t want these workers to get killed, we will have to pay that cost.”
David Michaels, who served as assistant secretary of labor at OSHA during the Obama administration and is now a professor at the George Washington School of Public Health commenting on necessary actions in response to heat emergencies, Heat Is Costing the U.S. Economy Billions in Lost Productivity, *New York Times, July 31, 2023, Heat Is Costing
“I know that statistically speaking, in 10 years, I’m gone. So, whatever I fight for now, I am not going to be the benefactor. It’ll be for the next generation.”
Elisabeth Stern, 75, a member of the KlimaSeniorinnen in Zurich, Switzerland and an avid hiker, Heat Waves Are Killing Older Women. Are They Also Violating Their Rights?, New York Times (free access), August 6, 2023, Killing Older Women
Should we find anybody abusing, harassing, maiming these older persons, I can assure you the necessary punishment would be inflicted on whoever does that.”
Joseph Motari, Kenya’s principal secretary for social protection and senior citizens affairs, BBC Africa Eye: Elderly caned at Kenya’s PCEA Thogoto Care Home for the Age, BBC News, August 6, 2023, BBC Africa Eye Elderly Caned
Looking beyond novel technology to strengthen current privacy laws may give a more holistic view of the many threats to privacy, and what freedoms need defending.
New neurotechnology is blurring the lines around mental privacy – but are new human rights the answer?, The Conversation, August 7, 2023, New neurotechnology
“Until every veteran in this country knows what is available to him or her, and has come in and filed a claim, and then we’ve awarded that claim for him or to her, I won’t be satisfied.”
Veterans Affairs Secretary Denis McDonough, Veterans see historic expansion of benefits for toxic exposure as new law nears anniversary, AP News, August 6, 2023 (updated), Historic expansion
“It’s all about opportunity and the chance for people like me and people my age to express themselves through fashion like any able-bodied person. It says a lot about who I am on the inside, and adaptive clothing allows me to do that.”
Oliver Scheier, an 18 year old who was born with muscular dystrophy, Clothes for kids with disabilities get better, but teens see a lack of fashionable options,AP News, August 4, 2023, Clothes for kids with disabilities
July 31, 2023
“We are struggling quite a bit with the staffing [for The Ride]. Which means we are scheduling trips less efficiently because we have less drivers. That has a direct impact on on-time performance, and when on-time performance is impacted, it increases call volume. Our call center is also understaffed.”
Michele] Stiehler, MBTA’s chief of paratransit services, Long a sore spot for riders with disabilities, service on the RIDE has gotten worse because of staffing shortages, *Boston Globe, July 29, 2023, Long a Sore Spot
“Twenty-year-olds can go out in 80-degree weather for hours and generally be OK. That’s not true for older adults.”
Dr. Angela Primbas, a geriatrician at U.C.L.A. Health. Heat Affects Older People More. Here’s How to Stay Safe. New York Times (free access), July 20, 2023, Heat Affects Older People
We all get hot. We all need water. We all need breaks. Lawmakers can ignore this reality because they work (on legislation like this bill) in air-conditioned offices. They drive home on roads made by the workers whose lives they are endangering. They pull inside their garages, close the door to the blistering heat and enter their comfortable homes, where their family members do not have to worry about dying of heat. It is unconscionable that in our wealthy country, we let blue-collar workers and the economically disadvantaged needlessly die in oppressive heat.
Tish Harrison Warren, Opinion Writer, Rising Heat Deaths Are Not Just About the Temperature, New York Times (free access), July 23, 2023, Rising Heat Deaths
Without sustainable interventions, increased reliance on air-conditioning will contribute to a cycle of accelerated fossil fuel burning to keep people cool as the world outside gets hotter.
As Heat Waves Intensify, Europe’s Cities Rely on Age-Old Ways to Stay Cool, New York Times, July 28, 2023, Heat Waves Intensify
Through their performances, dip hop artists not only subvert preconceived notions of music but also of Deaf culture and deafness, changing what it means for music to be heard.
Deaf rappers who lay down rhymes in sign languages are changing what it means for music to be heard, The Conversation, July 27, 2023, Deaf Rappers
So how blind you have to be to be blind? How much vision do you have to remove from the heap of sight before it becomes blindness?
Andrew Leland, Blindness isn’t a tragic binary — it’s a rich spectrum, TED Talk, Blindness Isn’t a Tragic Binary
“It’s actually really impressive to see what has been accomplished by both the state and the providers [with the Roadmap for Behavioral Health Care Reform]. . . Everyone wants it to be at its full potential now. The reality is we still have work to do.”
Karin Jeffers, president and chief executive of Clinic and Support Options, First six months of the state’s mental health overhaul reveal promise and challenges, *Boston Globe, July 27, 2023
“For too long, it’s been this idea of collaboration. That’s not the job of state survey agencies. We believe that strong enforcement, strong corrective action incentivizes change. Many of these operators are in it for the money. And until you reduce the amount of money they can suck away without repercussions, you’re not going to really change the behavior. Five-thousand-dollar fines, that doesn’t do anything to them.
“If you look at the amount of fines and you look routinely at the type of severe, endemic problems that are hurting nursing home residents, it’s pathetic. … There’s no real incentive to change. What we’re hearing is there’s just this huge decline in quality of care across the country. … And the fact is, it’s made worse by poor enforcement.”
Sam Brooks, The Consumer Voice’s director of public policy, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“Imagine if [twelve] day care centers in the first half of this year had been found to be putting children at risk of serious injury or death. Imagine what kind of reforms would be happening. We need to see this as an opportunity to rethink how we provide care to older adults and people with disabilities.”
Anna Doroghazi, associate state director of advocacy and outreach for the AARP in Connecticut, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“It makes me feel sick. People deserve better. Everybody deserves better care than this.”
Anna Doroghazi, associate state director of advocacy and outreach for the AARP in Connecticut, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“My first reaction is I want to cry. I cannot grasp that this is happening [in nursing homes] in our communities. It’s beyond comprehension. I just know we have to react. We have to work on this.”
Rep. Jane Garibay, a co-chair of the Connecticut legislature’s Aging Committee, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“[Gouverneur Morris, a founding father of America, who was disabled due to a severely impaired right arm and an amputated left leg,] had a different lived experience than [other Founding Fathers] because of his embodiment and I think we should be able to read some of the things he’s done with that in mind. I don’t want to essentialize Morris as only a disabled person because he was so much more than that. He was amazing. “But in how we think about how he came to be that kind of person, we need to think about his embodiment.”
Jennifer W. Reiss, an attorney in London with a PhD in history who has a form of cerebral palsy, The disabled Founding Father who put the ‘United’ in ‘United States’, *Washington Post, July 31, 2023 (updated), Disabled Founding Father
“We are very full. We have everything from heat cramps to heat stroke and death.”
Dr. Kara Geren, an emergency-medicine doctor at Valleywise Health Medical Center in central Phoenix, Phoenix’s Month in Hell: 31 Days of Extreme Heat Tests the City, *New York Times, July 31, 2023, Phoenix’s Month in Hell
[S]taffing in the [nursing home] sector is still a significant burden on skilled nursing operators and is limiting additional admissions in many markets around the country.”
Skilled nursing occupancy dips: NIC, McKnight’s Senior Housing News, June 6, 2023, Skilled Nursing Occupancy Dips
“This program has been wildly successful and effective in keeping people in their homes and has helped avert the tsunami of evictions in the commonwealth that many have been concerned about since the 2020 pandemic started.”
State Representative Aaron Michlewitz, Chair, House Ways and Means Committee, Legislature Reviving Program to Prevent Evictions, *State House News, July 31, 2023, Reviving Eviction Protection
July 24, 2023
“Too often, fear of staff retaliation – the fear itself – prevents residents from voicing concerns and from receiving the care and services to which they are entitled. Ultimately, this inaction leads to unnecessary emotional, psychological, and physical harm to vulnerable residents.”
“They Make You Pay”, Long Term Care Community Coalition, June 2023, “They Make You Pay.”
“Staff acted like we were non-people. They don’t even acknowledge that we are human.”
Interviewed nursing home resident, “They Make You Pay”, Long Term Care Community Coalition, June 2023, “They Make You Pay.”
“Some staff treat residents like gold, but others are just not nice.”
An Illinois nursing home resident to state surveyor, “They Make You Pay”, Long Term Care Community Coalition, June 2023, “They Make You Pay.”
The enormous vacuum created by deinstitutionalization has been a calamity for both the mentally ill and society at large. The role once occupied by the asylum has been transferred to the institutions perhaps least able to deal with mental health issues—prisons and jails. The number of inmates in the U.S. in 1955 was 185,000; today, that figure is 1,900,000.
David Oshinsky, It’s Time to Bring Back Asylums, Wall Street Journal, Time to Bring Back Asylums (free access), July 21, 2023
“This study demonstrates the profound effect of early detection of influenza in long-term care facilities. Nursing homes are collections of very vulnerable individuals, so anything we can do to protect them is very important.”
Dr. Jonathan Temte, professor of family medicine and community health at the University of Wisconsin School of Medicine and Public Health, Study Reveals Importance of Early Influenza Detection for Nursing Home Residents, Skilled Nursing News, July 21, 2023, Early Influenza Detection
The U.S. health-care system is costly to families and the country. Morally, improving access is the right thing to do for Americans in pain. Financially, it makes sense, too.
Health insurance is keeping your mind sick and wallet empty, *Washington Post, July 21, 2023, Keeping Your Mind Sick
Health disparities, or preventable differences in the burden of chronic disease and health outcomes, are a driving force behind mental health inequities. Our health equity problem is of our own making, created by artificial caste distinctions, persistent racism, and how we structure our economy and investments in health care; the status of health care disparities is determined, largely, in the ways that the private sector either confronts them or looks away.
Addressing The Mental Health Equity Crisis: Can The Private Sector Lead?, Health Affairs Forefront, July 19, 2023, Mental Health Equity Crisis
So, by virtue of carving out a form of medical care for poor people – which is seen as welfare or a “handout” – the system can exploit them for financial gain while denying them the quality of care every other citizen deserves even though every form of healthcare received by Americans is heavily subsidized in some way or other by government.
Dave Kingsley, Managed Care & Privatization was Supposed to Save Taxpayers Money & Work Better than Government Administered Medical Care, but That’s Not What is Happening. Tallgrass Economics, July 23, 2023, Managed Care & Privatization
Three factors raise concerns that some people enrolled in Medicaid managed care may not be receiving all medically necessary health care services intended to be covered: (1) the high number and rates of denied prior authorization requests, (2) the limited oversight of prior authorization denials in most States, and (3) the limited access to external medical reviews.
High Rates of Prior Authorization Denials by Some Plans and Limited State Oversight Raise Concerns About Access to Care in Medicaid Managed Care, U. S. Department of Health and Human Services Office of Inspector General, July 17, 2023, Complete Report on Authorization Denials
July 17, 2023
Nearly all facilities would meet a requirement of 2.5 or fewer HPRD [hours per resident day] and 85% of facilities would meet a requirement of 3.0 HPRD, but close to half (45%) of all nursing facilities would not meet a 3.5 HPRD requirements, and only 29% would meet an HPRD of 4.0.
What Share of Nursing Facilities Would Meet Possible New Staffing Requirements?, Kaiser Family Foundation, July 14, 2023, New Staffing Requirements
Ultimately the dead may teach the living, but it is the duty of the living to be the voice advocating for the dead.
When it comes to donating bodies for research, the living must advocate for the dead, *Boston Globe, July 15, 2023, Living must advocate for the dead
The risk of natural disasters is everywhere (even in the most resilient places). People will no longer just have to prepare for intensified versions of the natural disasters they know, but they will also have to consider the possibility of new types of disasters — floods, storms, heat waves, droughts, and fires — impacting their community.
There’s no such thing as a disaster-resistant place anymore, Vox, July 13, 2023, No such thing as disaster-resistant place
“We are still relatively early on in the process and haven’t yet seen the real steep increase in newly eligible people who are reaching their termination date with MassHealth, but we anticipate those more substantial waves are coming soon.”
Massachusetts Health . Connector Executive Director Audrey Gasteier. On MassHealth Shift, “Substantial Waves” Still In Distance, State House News, July 13, 2023, Substantial Waves
“You can say with some kind of degree of confidence what the demographics will look like. What the society will look like depends enormously on policy choices and behavioral change.”
Philip O’Keefe, Director of the Aging Asia Research Hub at the ARC Center of Excellence in Population Aging Research, How a Vast Demographic Shift Will Reshape the World, *New York Times, July 16, 2023, Vast Demographic Shift
[Prior to the passage of the Americans with Disabilities Act, h]aving a disability was considered a medical problem to be solved rather than an identity to be protected under non-discrimination laws.
How the Americans with Disabilities Act transformed a country, National Geographic, July 30, 2020, ADA Transformed a Country
“[The Americans with Disability Act] is the world’s first declaration of equality for people with disabilities. It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that henceforth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people.”
Justin Dart, vice chair of the National Council on Disability known as the “Godfather of the ADA”, How the Americans with Disabilities Act transformed a country, National Geographic, July 30, 2020, ADA Transformed a Country
The history of wheelchair development “shows disabled people as active agents and directing their own lives,”—lives that are made more mobile and independent.
Nicholas Watson, Professor of Disability Studies and Director of the Centre for Disability Research at the University of Glasgow, How the wheelchair opened up the world to millions of people, *National Geographic, July 14, 2023, Wheelchair opened up the world
“As a user of the DOT and MBTA systems herself, Dr. [Lisa] Iezzoni will bring a critical perspective to [the Massachusetts Department of Transportation’s] board [of directors] that will help us ensure that our transportation system is accessible for people with disabilities.”
Gov. Maura Healey, Healey Fills MassDOT Openings with Transpo Veterans, *State House News, June 28, 2023, Healey Fills DOT Openings
“[Dr. Lisa Iezzoni] has done an enormous amount to put disability issues on the map, to uncover bias against our community. We are really lucky to have her.”
Colin Killick, executive director, Disability Policy Consortium, ‘We are really lucky to have her’: For disability community, historic MassDOT board hire Lisa Iezzoni inspires confidence, *Boston Globe, June 28, 2023, Lucky to Have Her
July 10, 2023
“When I think about something like Alzheimer’s disease, I think of it as a disease of autonomy. It affects people’s ability to make decisions about what’s important to them. One of my big concerns is that when we look at tools like guardianship, we’re stripping people of decision-making authority prematurely. . . I think we should really keep people empowered as long as possible — and [supportive decision-making] is a way of doing that.”
Emily Largent, a professor of medical ethics and health policy at the University of Pennsylvania and proponent of supported decision-making, How can seniors with cognitive impairment keep their independence? Pittsburgh Post-Gazette, July 8, 2023, Cognitive Impairment Independence
Created “Out of Thin Air”: The Shared Clinical Decision Making (SCDM) Recommendation Hinders Vaccine Access
With the Word ‘May’, ACIP Leaves Seniors Vulnerable To RSV This Winter, Health Affairs, July 5, 2023, ACIP Leaves Seniors Vulnerable
“This confirmatory study verified that [Leqembi] is a safe and effective treatment for patients with Alzheimer’s disease.”
Dr. Teresa Buracchio, the Food and Drug Administration’s neurology drug director, First Alzheimer’s drug to slow disease progression gets full FDA approval, triggering broader Medicare coverage, CNN Health, July 6, 2023. First Alzheimer’s Drug to Slow Disease
“Getting that insurance coverage is incredibly significant … because having a treatment is awesome, but I can’t afford to pay the $26,000 cost [for Leqembi].”
Joe Montminy, 59, who was diagnosed with younger-onset Alzheimer’s in his early 50s, First Alzheimer’s drug to slow disease progression gets full FDA approval, triggering broader Medicare coverage, CNN Health, July 6, 2023, First Alzheimer’s Drug to Slow Disease
“You’ve got small benefits and a certain risk for serious adverse events, and that has to be balanced. If its efficacy were greater, we would not be talking about adverse events as much because we would see a clear benefit. I think many people will see this and say it’s not worth the effort, it’s not worth twice-a-month infusions.”
Dr. Lon Schneider, director of the California Alzheimer’s Disease Center at the University of Southern California, who said he will prescribe Leqembi to carefully evaluated patients, New Federal Decisions Make Alzheimer’s Drug Leqembi Widely Accessible, *New York Times, July 6, 2023, Leqembi Widely Accessible
“It’s really the first time that you have domestic workers, home care, child care, early educators, nursing home workers all together to say, ‘Our jobs are the jobs of the future. Our work is here to stay.’”
Ai-jen Poo envisioned the National Domestic Workers Alliance (NDWA), Domestic workers are organizing for better working conditions nationwide, The Hill, July 9, 2023, Domestic Workers Organizing
“It is incredibly sad to be in this situation and have so little capacity to absorb the need.”
Libby Bennett of Groundworks Collaborative, which runs two shelters in Brattleboro, a city in southern Vermont, Last days at the Cortina: Homeless left adrift as covid-era housing ends, *Washington Post, July 7, 2023, Last Days at the Cortina
“A joke about dropping acid at Woodstock ‘makes me colorful’. Crushing OxyContin and snorting it is not colorful.”
Dr. Keith Humphreys, a psychologist and addiction researcher at the Stanford University School of Medicine, commenting on the rise of substance use issues regarding older adults, Substance Abuse Is Climbing Among Senior, New York Times (free access), July 9, 2023, Substance Use Climbing Among Older Adults
Americans need a collective change in mindset about energy access. That should start with a principle that all people should have access to critical energy services and that utilities should only shut off service to customers as a last resort, especially during health-compromising weather events.
America faces a power disconnection crisis amid rising heat: In 31 states, utilities can shut off electricity for nonpayment in a heat wave, The Conversation, July 5, 2023, America Faces Power Disconnect
June 26, 2023
“You have to keep moving. I intend to do this until I die.”
Virginia Oliver, 103 year-old who has been lobstering in Maine for 95 years, ‘Lobster Lady’ turns 103, has been hauling traps for 95 years, *Washington Post, June 21, 2023, Lobster Lady
“I didn’t think any deep thoughts. I didn’t figure it all out. I didn’t come out like, woohoo, a Zen master, [b]ut it cleansed my palate. When I came out, I felt better. I felt confident. I felt clearer. I felt I had accomplished something.”
Cathy Brennan, 62 year old solo kayaker, Seeking adventure, a 62-year-old woman kayaks the entire Potomac solo, *Washington Post, June 23, 2023, Seeking Adventure
Anyone who has a loved one who must go to or live in a nursing home would probably agree that it is unsatisfactory to have them there. If you want change, you need to bring this to the repeated attention of your elected representatives and to ask directly for the much-needed changes.
The Call For Nursing Home Reform: Will It Have Any Effect?, Forbes, January 6, 2023, Call For Nursing Home Reform
“It’s our job to keep people safe. We can leave someone with wounds that clearly look infected and is sitting in feces and urine. Do you think they have a right to stay there? Maybe. But do we have a responsibility as social service providers, and social workers, and ultimately as human beings to look out for this person, because if we don’t, who’s going to do it?”
Juan Rivera, BronxWorks’s outreach director, He Was Handcuffed and Hospitalized. Now He’s on Track for Housing. *New York Times, June 25, 2023, He Was Handcuffed
“There are some states that don’t particularly mind shedding folks off of their Medicaid rolls and aren’t particularly concerned where people land. That’s obviously not the case with Massachusetts. We have 97 percent of our residents in coverage. We don’t want to see backsliding on that. We don’t want to see people losing their coverage and becoming uninsured.”
Audrey Morse Gasteier, executive director of the Massachusetts Health Connector, Medicaid redetermination process off to fast start, CommonWealth Daily Download, June 20, 2023, Medicaid Redetermination Fast Start
“I’m hearing a lot about in-law apartments, accessory dwellings, tiny homes.”
State Rural Director Anne Gobi, alluding to possible solutions to the lack of housing, New role as director of rural affairs means new challenges for Sen. Anne Gobi of Spencer, Worcester Telegram and Gazette, June 24, 2023, Gobi’s New Role
June 12, 2023
The pandemic left millions of people who suffer with lingering symptoms. To grapple with this legacy, we must continue research to find answers to a series of biomedical questions. First among them is to establish a definition of “long covid” and identify the most common symptoms.
The mystery of long covid needs to be unraveled. We’re getting closer. *Washington Post, June 11, 2023, Mystery of Long Covid
“One of the big take-aways from this study [about long Covid] is [that] long COVID is not just one syndrome; it’s a syndrome of syndromes.”
Dr. Andrea Foulkes of the RECOVER Data Resource Core, Harvard Medical School, and Massachusetts General Hospital, Toward a deeper understanding of long COVID, National Institute of Health, June 6, 2023, Deeper Understanding of Long Covid
“We’re not going to get profiteering out of the business until we make changes.”
Larry Atkins, chief policy officer of the National Partnership for Healthcare and Hospice Innovation, which represents about 100 nonprofit hospices. Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice
“It’s clear we need to strengthen oversight, but we must also modernize payment programs to meet the needs of patients and make it harder for people to game the system.”
Representative Earl Blumenauer, an Oregon Democrat who has long been involved in end-of-life legislation, Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice
“[Hospice is] a small segment of the health care system, but it’s such an important one. If you screw it up, people don’t forget.”
Dr. Joan Teno, a Brown University health policy researcher, Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice
[T]he number of people with I/DD receiving Medicaid home and community-based services and living with family has increased by 143% between 1998 and 2018. An estimated 1 million households in the U.S. include an adult with I/DD living with and supported by an aging caregiver, and this number is growing.
CMS Releases Resources on Supporting Adults with I/DD and Their Aging Caregivers, Administration on Community Living, June 12, 2023, Aging Caregivers
“When state survey agencies do not have adequate staffing to visit and investigate the complaints, residents may be left at the mercy of non-caring facility staff and ownership who are not held accountable … This negatively impacts not only the physical well-being of residents, but their dignity and emotional health as well.”
Victor Orija, North Carolina’s long-term care ombudsman, Inadequate oversight: Lack of inspectors leaves some nursing home complaints unaddressed for months, NC Health News, June 12, 2023, inadequate oversight
“It’s not local people who own these buildings anymore. Even the administrators of these facilities feel like they can’t make changes or make a difference because of the out-of-state ownership.”
Hillary Kaylor, nursing home ombudsman in Mecklenburg County, North Carolina, Inadequate oversight: Lack of inspectors leaves some nursing home complaints unaddressed for months, NC Health News, June 12, 2023, inadequate oversight
On June 8, 2023, the United States Supreme Court granted long-term care residents the right to sue state-run facilities under federal laws. This opinion creates a new line of litigation against state long-term care facilities.
The U.S. Supreme Court Expands Lawsuit Options Against State Long Term Care Facilities, JD Supra, June 9, 2023, Expands Lawsuit Options
Ownership of many nursing facilities, especially the worst ones, has become a shell game subject to high-frequency shifts of ownership and changing facility names.
The game exceeds the demonstrated ability of governments to track those changes for purposes of public information. That game has to at least complicate regulation if not thwart it. . .
A nursing home that routinely loses money, assuming the financial reporting is accurate, which is a known problem in facilities owned by some private equity firms, is a risk regardless of the latest CMS star ratings.
Scandal in Plain Sight – Virginia’s Failed Regulation of Law-Avoiding Nursing Home Owners, Bacon’s Revolt, June 10, 2023, Scandal in Plain Sight
June 5, 2023
The key questions asked in 1990 remain in 2023: How will we serve and support aging [adults] and [persons] with disabilities and give them the respect and quality of care they deserve? Will we serve people where they prefer — in their own homes and communities — or will we serve them in large institutional settings that take away their identities and their dignity? What will be done to ensure the presence of a high-quality and stable workforce? Who will pay, and how much, for the services needed?
Opinion: The crisis in nursing home care is becoming a catastrophe, *Des Moines Register, June 4, 2023, Crisis Becoming a Catastrophe
What has happened in the 33 years since the call for urgent action? Shockingly and frustratingly, not much. Presidents, governors, and legislators have been unwilling to take bold action. Instead, they have chosen to convene more commissions, committees, task forces, and blue-ribbon panels, all of which produced similarly startling reports that ended with the same urgent call to act.
Opinion: The crisis in nursing home care is becoming a catastrophe,* Des Moines Register, June 4, 2023, Crisis Becoming a Catastrophe
Lack of action has allowed things to only get worse.
Results of this study suggest widespread underreporting of major injury falls and pressure ulcers across US nursing homes, and underreporting was associated with the racial and ethnic composition of a facility.
Underreporting of Quality Measures and Associated Facility Characteristics and Racial Disparities in US Nursing Home Ratings, JAMA Network, May 23, 2023, Underreporting of Quality Measures and Associated Facility Characteristics and Racial Disparities in US Nursing Home Ratings
“Having family members be workers does help cover a gap given the workforce issues, but then who is proving respite to that family member? … It definitely covers a gap, but there is a quality of life for that caregiver that may become important and affect the participant.”
Louisiana State Official, Emerging Respite Care Strategies in Medicaid Home and Community-Based Services Waivers for Older Adults, Adults with Physical Disabilities, and their Family Caregivers, National Academy for State Health Policy, May 26, 2023, Emerging Respite Care Strategies in Medicaid Home and Community-Based Services Waivers for Older Adults, Adults with Physical Disabilities, and their Family Caregivers
The debt ceiling agreement would put almost 750,000 older adults aged 50-54 at risk of losing food assistance through an expansion of the existing, failed SNAP work-reporting requirement.
Debt Ceiling Agreement’s SNAP Changes Would Increase Hunger and Poverty for Many Older Low-Income People; New Exemptions Would Help Some Others, Center on Budget and Policy Priorities, May 31, 2023, jeopardize SNAP food assistance for 750,000 older adults ages 50-54
Ai-jen Poo [president of the National Domestic Workers Alliance and executive director of Caring Across Generations]: So, every year, 4 million babies born, every year, 4 million people turn 65 and live longer than ever. And who we have in the middle is us, and we’re both managing care at a time when we have less of it. And it’s that panini effect, some people use the sandwich generation metaphor. I find sandwich to be a little gentle as a metaphor for this dynamic that we’re kind of —
Chris Hayes: You mean you want to think about being pressed on a hot grill is why you used panini.
Ai-jen Poo: I mean, that’s how it feels like.
The Care Economy with Ai-jen Poo [president of the National Domestic Workers Alliance and executive director of Caring Across Generations], Why Is This Happening? (Podcast and transcript), May 31, 2023, The Care Economy
Ask yourself, what ought to be the primary goal of American health care? To my mind it is this: to maintain and improve individual and population health most effectively and efficiently. And if that is correct, there are two critical questions we all need to ask: (1) Why are we failing so miserably to achieve this goal? and (2) Why are doctors and other health care professionals willing to go along with this dysfunctional system?
America’s Broken Health Care: Diagnosis and Prescription, Imprimis (A publication of Hillsdale College), February 2, 2023, America’s Broken Health Care
Oliver Wendell Holmes said in 1869, “The state of medicine is an index of the civilization of an age and country—one of the best, perhaps, by which it can be judged.” Medical science is a wonderful gift, but we have to use that gift wisely so that it serves the American people by providing the best and most efficient care. We can’t allow it to be held hostage by the medical-industrial complex.
America’s Broken Health Care: Diagnosis and Prescription, Imprimis (A publication of Hillsdale College), February 2, 2023, America’s Broken Health Care
[Holland Kaplan, a physician and bioethicist] has written about performing chest compressions on a frail, elderly patient and feeling his ribs crack like twigs. She found herself wishing she were “holding his hand in his last dying moments, instead of crushing his sternum.” She told me that she’s had nightmares about it. She described noticing his eyes, which were open, while she was performing CPR. Blood spurted out of his endotracheal tube with each compression.
“I felt like I was doing harm to him,” she told me. “I felt like he deserved a more dignified death.” It’s no wonder that many doctors are not fond of CPR, and choose not to receive it themselves.
For many, a ‘natural death’ may be preferable to enduring CPR, NPR Shots, May 29. 2023, A Natural Death
“Give people something they can say yes to.” Physicians have the knowledge and experience to guide patients in choosing measures they may benefit from, declining those that may harm, and aligning interventions with their wishes and values. The most important thing, instead of always taking action, is to ask.
Holland Kaplan, a physician and bioethicist, For many, a ‘natural death’ may be preferable to enduring CPR, NPR Shots, May 29. 2023, A Natural Death
May 29, 2023
“People really want to be able to depend on a job, and to be able to invest in it and respect is a huge thing — how much you feel the respect of the people around you.”
Caroline Suh, director of the Netflex film Working: What We Do All Day, ‘Working: What We Do All Day’ Explores What a ‘Good’ Job Actually Is In a new limited series, Tudum, May 17, 2023, What a Good Job Is
[Residential care] facilities “shouldn’t have it both ways. You can’t on one hand say: ‘Oh, we’re an alternative to nursing facilities,’” and then when something bad happens say: “Well, we can’t be expected to have expertise on that stuff. We’re a social facility. We’re a nonmedical model.’”
Eric Carlson, director of long-term services and support advocacy at Justice in Aging, As Residential Care Homes Expand in Maine, Seniors Don’t Always Get the Care They Need, ProPublica, May 21, 2023, Residential care homes in Maine
“The law establishes mechanisms for at least a moderate review of the character and competence of an applicant [for ownership of a nursing home. The failure to provide complete information on a provider’s past performance fundamentally undermines the review process.”
Richard Mollot, director of the Long-Term Care Community Coalition in New York, How N.Y.’s Biggest For-Profit Nursing Home Group Flourishes Despite a Record of Patient Harm, Gray Panthers Political Action Committee, August 19, 2022,
“These [nursing home] corporations are engaged in buying and selling of real estate with very favorable tax rewards. The corporations can practice medicine and also profit from Medicare, Medicaid, and other programs that can be hijacked for the corporation’s benefit rather than for the benefit of those in their care.”
Gray Panthers’ Statement on the American Nursing Home System: “Restructure the Industry and Defund the Existing System.” Tallgrass Economics, May 27, 2023, Restructure the NH Industry
The truth is that the federal and state governments allow for a charade in which facility-specific costs are submitted without any clarity about cash flowing to holding companies and parent corporations. We don’t really know how much Medicaid and Medicare revenue in the privatized nursing home system is extracted for dividends, and executive pay.
David Kingsley, The State of Nursing Home Financial Reporting in Post Truth America, Tallgrass Economics, May 24, 2023, Financial Reporting Post Truth America
May 22, 2023
“We see [minimum staffing requirements] as probably the most significant increase in protections for residents in decades. It might very well be the most important nursing home reform really since nursing homes were invented.”
Sam Brooks, director of public policy for the National Consumer Voice for Quality Long-Term Care, Biden’s nursing home staff mandates expected soon,*The Washington Post, May 9, 2023, Biden’s nursing home staffing mandates
“While we appreciate CMS taking steps to implement this long overdue rule, which establishes requirements for the disclosure of information about the owners and operators of Medicare skilled nursing facilities and Medicaid nursing facilities, we believe that certain provisions of the proposed rule could be strengthened for the benefit of patients. Specifically, we urge you to clarify ownership definitions, establish strong auditing and enforcement measures, and ensure that comprehensive reporting information is made available to the public in an easily searchable format. Increased transparency will empower older adults, their families, researchers, and health care providers to identify nursing homes that provide excellent care, while at the same time hold bad actors accountable. To prevent nursing homeowners from prioritizing profits over patients, these data will give CMS the tools to identify waste, fraud, and abuse of federal Medicare and Medicaid dollars.”
Sen. Elizabeth Warren (D-MA), Sen. Charles Grassley (R-IA), Sen. Bob Casey (D-PA), Rep. Lloyd Doggett (D-TX), and Katie Porter (D-CA), Chuck Grassley (newsletter), May 19, 2023, Warren, Grassley Lead the Call for Greater Transparency in Nursing Home Ownership, Warren, Grassley Lead Call
Though new cases have not since reached [the] peak [seen in 2021], the impacts of the pandemic on Massachusetts and its health care system persist today. CHIA will continue to monitor these trends in the coming years.
Annual Report on the Performance of the Massachusetts Health Care System, Center for Health Information and Analysis, March 2023
So, while many of these nursing homes continue to claim they cannot afford to raise wages to increase staffing, there is plenty of evidence to show they can. . . What’s more, this crisis is rooted in the systemic racism of our care infrastructure. More than half of CNAs are people of color, and 90 percent are women. Yet despite nursing homes receiving billions of dollars from the Provider Relief Fund and other COVID-19 funding, real wages for CNAs actually declined from 2020 to 2021.
Rep. Steven Horsford (D-Nev.) and SEIU President Mary Kay Henry, Why we must care for our caregivers and address the nursing home staffing crisis, The Hill, May 18, 2023, Nursing Home Staffing Crisis
The United States is experiencing a significant shortage of, and a growing demand for, qualified workers who are capable of managing, supervising, and providing high-quality services and supports for older adults.
National Workforce Crisis facing Long-Term Services and Supports, LeadingAge, Undated, National Workforce Crisis
“Survey agencies have not received a meaningful increase in federal funding to complete these critical oversight responsibilities since 2015, yet the cost to recruit and retain survey staff, the volume of work and additional work expected of survey agencies has significantly increased. These factors have resulted in many survey agencies being unable to complete recertification and complaint surveys timely, leaving nursing home residents at risk of substandard care.”
Shelly Williamson, president of the board of directors for the Association of Health Facility Survey Agencies (AHFSA), ‘System in Crisis’: US Senate Hearing Calls for More Funding, Staffing for Nursing Home Inspections, Skilled Nursing News, May 18, 2023, System in Crisis
“Underfunded and understaffed, state agencies have fallen behind on the basic duties that they’re charged with executing on, for example, conducting annual nursing home inspections and responding to resident complaints in a timely manner. Nursing home residents are at risk because of this problem.”
Sen. Bob Casey (D-PA), chairman ofthe Special Committee on Aging, Nursing home oversight ‘a system in crisis,’ Senate committee finds, McKnight’s Long-Term Care News, May 19, 2023, Nursing Home Oversight
How do you define disability?
“It is not the presence of the impairment, but it is the social and attitudinal barriers that are hindering our performance. And what we want is for those barriers to be removed so that a person with any kind of impairment can perform at the same level as anybody else. . . Disability is not an issue. And so, we should stop making it an issue. Rather, we should embrace it as a kind of diversity.”
Gertrude Oforiwa Fefoame of Ghana, the new chair of the United Nations Committee on the Rights of Persons with Disabilities and the first African woman in that post, She’s a U.N. disability advocate who won’t see her own blindness as a disability, Goats and Soda – NPR, May 13, 2023, UN Disability Advocate
In a 2012 conference call, [Sam] Zell, [property mogul who is the largest landlord of mobile homes in the US,] said he liked “the oligopoly nature of our business”, in reference to limited competition in the mobile home industry. Zell self-coined the term “grave dancer”. As a rebuttal, tenants and tenant advocates have labeled him a “grandma gouger” over rent increases on the tenants, often older, at his parks.
‘It’s hell’: life under the American mobile home king who calls himself a ‘grave dancer’, The Guardian, May 11, 2023, It’s hell
“It’s sickening. It’s just misery and people will tell me all the time; I feel like I’m in prison here. What did I do to pay money to these people every month to deserve this? It is by far and large the worst consumer experience I have ever had in my life. They’re slumlords and there’s no way around it.”
Brey Mafi, homeowner in the mobile home community in Lake Elmo, Minnesota, ‘It’s hell’: life under the American mobile home king who calls himself a ‘grave dancer’,The Guardian, May 11, 2023
“The question becomes, for the older adult, what are the barriers to evolving, to changing your opinions, to forming new relationships?” asks Nina Kohn, a law professor at Syracuse University with a specialty in the civil rights of older people. “When you form these new relationships, does that trigger people trying to remove your rights? The answer is: In some cases, it does.” In particular, “decisions that seem atypical are going to be treated as suspect.” An older man who spent his life in a heterosexual marriage and now wishes to love another man might, for instance, be restrained from doing so. So might a woman who falls in love with a man decades her junior. Or, say, a wealthy 80-something widow who takes up with a horseshoer. “And all of those social biases are now being used to potentially undo individuals’ decisions while they’re still alive.”
The Mother Who Changed: A Story of Dementia, New York Times Magazine (free access), May 9, 2023, The Mother Who Changed
Within the legal world, “there has been, in the last several years, a real sea change in thinking about capacity,” Charlie Sabatino, former director of the American Bar Association’s Commission on Law and Aging, said. “The real die-hard view is that you never lose capacity.” In this newer view, a person can occupy an infinite number of spaces on a gradient from legally capable to incapable, with the far end of the spectrum reserved for people stuck in comas or vegetative states. Short of that extreme, a person will almost certainly retain the ability to choose some things for herself, even if she can’t choose everything. A person might, for instance, be legally incapable of carrying out a complex property transaction but capable of managing a small bank account.
The Mother Who Changed: A Story of Dementia, New York Times Magazine (free access), May 9, 2023, The Mother Who Changed
“Having health care coverage is fundamental to reducing health disparities, but it must go hand-in-hand with timely access to services. Connecting those priorities lies at the heart of these proposed rules. With the provisions we’ve outlined, we’re poised to bring Medicaid or (Children’s Health Insurance Program) coverage and access together in unprecedented ways — a key priority that’s long overdue for eligible program participants who still face barriers connecting to care.”
Chiquita Brooks-LaSure, Administrator for the Centers of Medicare and Medicaid Services, Feds Want To Shake Up Rules For Home And Community-Based Services, Disability Scoop, May 5, 2203, Rules for HCBS
In the real world, it looks as if voters in 2024 will have to weigh Mr. Biden’s advanced age more or less as he proposes — not compared with the alternatives they wish they had but compared with the ones they do.
Opinion: How should Americans think about Biden’s age? Like this. Washington Post (free access), May 19, 2023
May 15, 2023
The coronavirus pandemic has cost millions of lives and trillions of dollars, has upended the economy, and has exposed and aggravated a grim roster of disparities and societal fissures. Though it’s hard to imagine, the next pandemic could do far worse. We have the tools to prevent that from happening, but we have to start putting the lessons of the past three years to use now.
America Is Forgetting the Lessons of the Covid Health Emergency, *New York Times, May 11, 2023, America Is Forgetting Lessons
“Most of us will be a caregiver at some point.”
Sarah Johal, executive director of the Parents in Tech Alliance, a national nonprofit working to build healthy workplaces for families, Struggling Caregivers Find New Support From Employee Resource Groups, *Wall Street Journal, May 11, 2023, Struggling Caregivers
“Particularly in senior services, the demand for our services is exploding, in-home care and institutional care and acute care, and we don’t have enough people, and if we don’t do something about it soon, we’re going to be in a real, real bad situation.”
Clif Porter, the senior vice president of government relations for AHCA/NCAL, Visa freeze imperils nursing workforce, Politico, May 15, 2023, Visa freeze imperils nursing workforce
“Our Administration will continue to honor [the] sacrifices [of Massachusetts veterans] by ensuring that veterans receive the care and services they’ve earned and deserve.”
Lt. Gov. Kim Driscoll, Holyoke Veterans’ Home Looks to Bright Future with New Executive Office of Veterans’ Services (EOVS), Executive Office of Veterans’ Services, May 1, 2023, Holyoke $164M funding
“Family caregivers make up 20 percent of the workforce and they are in crisis – which means we are all in crisis. The issues surrounding caregiver employees have been bubbling beneath the surface for decades and we cannot afford to ignore them any longer. We are calling on employers to join us in taking bold steps toward solutions that will improve the lives of their employees and benefit the bottom line.”
Dr. Jennifer Olsen, chief executive officer, the Rosalynn Carter Institute for Caregivers, New White Paper Reveals Why One-in-Five Employees are at Risk of Leaving the Workforce, and What Employers Can Do to Help, the Rosalynn Carter Institute for Caregivers, February 28, 2022, Leaving the Workforce
“We think [creating the position of Secretary of the Executive Office of Housing] is certainly going to be a chief reason we’re going to be able to meet or hopefully close the gap on the 200,000 housing units that we are short in Massachusetts.”
Lt. Gov. Kim Driscoll, Source: Healey Chooses Augustus For Housing Secretary, *State House News, May 15, 2023, Healey Chooses Augustus
May 8, 2023
Lawmakers must take a more critical look at what the state’s powerful nursing home lobby legitimately needs and what guardrails, including audits, are needed to make sure taxpayer money doesn’t just end up lining the pockets of for-profit nursing home operators. . .
And are the guardrails sufficient?
More money is tied into federal quality metrics. . . But will the state actually audit use of these monies? It should.
And why not use this spending to force improvements in nursing-home deficiencies, such as non-responsiveness to residents’ needs, that drive a large proportion of complaints in [the state].
Nursing-home budget largesse should reflect need, not lobbying clout: editorial, Cleveland.com, May 7, 2023, Reflect Need Not Lobbying Clout
The home care workforce grew from approximately 840,000 to 1.22 million workers between 2008 and 2013. After 2013, growth slowed, ultimately reaching 1.42 million workers in 2019. In contrast, the number of Medicaid HCBS participants grew continuously from 2008 to 2020, with accelerated growth between 2013 and 2020. As a consequence, the number of home care workers per 100 HCBS participants declined by 11.6 percent between 2013 and 2019.
The Home Care Workforce Has Not Kept Pace With Growth In Home And Community-Based Services, *Health Affairs, April 19, 2023, Home Care Workforce
“It’s plain and simple: families deserve transparency when making decisions about hospice and home health care for their loved ones. . . Shining a light on ownership data is good for families, good for researchers, and good for enforcement agencies.”
U.S. Department of Health and Human Services Secretary Xavier Becerra, For the First Time, HHS Is Making Ownership Data for All Medicare-Certified, Centers for Medicare & Medicaid Services, April 20, 2023, Home Health Agency Ownership Data
“We want to make sure that the nursing home industry is more transparent. . .Nursing homes frequently use other companies to provide various services. Generally, the public doesn’t know what companies provide which services or [whether] companies might be contracted to nursing home owners. Making this information available publicly empowers nursing home residents and their families to make more informed decisions about their care.”
Dara Corrigan, deputy CMS administrator and director of the agency’s Center for Program Integrity, CMS eager to leverage new nursing home ownership data, leader confirms, McKnight’s Long Term Care News, April 26, 2023, CMS Eager to Leverage
We know that powerful forces in the nursing home industry, including private equity investors, vigorously oppose a minimum staffing standard. Private equity investors often turn a profit by manipulating personnel: hiring fewer workers and slashing pay and benefits at the cost of patient care. Setting a staffing standard would mean having to pay higher wages to attract more people to the industry; it would mean paying a living wage, so working in a nursing home would be a sustainable, family-supporting job.
In Recognition of Caregivers, White House Readies to Help Nursing Home Worker, AFL-CIO, May 1, 2023, in recognition of caregivers
“Older adults, in particular those with underlying health conditions, such as heart or lung disease or weakened immune systems, are at high risk for severe disease caused by RSV. Today’s approval of the first RSV vaccine is an important public health achievement to prevent a disease which can be life-threatening.”
Peter Marks, director of the FDA’s Center for Biologics Evaluation and Research, First vaccine targeting RSV wins FDA approval. More are coming. *Washington Post, May 3, 2023 (updated), RSV Wins FDA Approval
Lawmakers must take a more critical look at what the state’s powerful nursing home lobby legitimately needs and what guardrails, including audits, are needed to make sure taxpayer money doesn’t just end up lining the pockets of for-profit nursing home operators. . .
And are the guardrails sufficient?
More money is tied into federal quality metrics. . . But will the state actually audit use of these monies? It should.
And why not use this spending to force improvements in nursing-home deficiencies, such as non-responsiveness to residents’ needs, that drive a large proportion of complaints in [the state].
Nursing-home budget largesse should reflect need, not lobbying clout: editorial, Cleveland.com, May 7, 2023, Reflect Need Not Lobbying Clout
There continues to be a dire need for changes within the nursing home structure. If you have not visited a nursing home recently, it’s an eye-opening experience! The lack of adequate staff along with inadequate training needs to be addressed.
Ruth Bensmiller-Reed, Inadequate nursing home care must be addressed, The Gazette, May 7, 2023, Inadequate Nursing Home Care
Visiting a hospital or clinic today feels like facing a firing squad, with rounds and rounds of bills coming from every direction. Fewer than half of Americans rate the quality of U.S. health care as excellent or good. . .
Patients are burned out. Nurses are leaving the profession. Doctors are demoralized. In the meantime, the people not sick or tending to sickness — the corporate middlemen in charge of insurance companies, private hospitals, doctor practices and pharmaceutical companies — are feasting. As Donald Berwick, a former administrator for the Centers for Medicare and Medicaid Services, noted, the “glorification of profit, salve lucrum, is harming both care and health.”
Dr. Ricardo Nuila, American Health Care Is Dying. This Hospital Could Cure It., New York Times (free access), March 9, 2023, American Health Care Is Dying
After listening to partisan rants on both sides that aim only to tweak rather than remake our system, I suggest we hold a national referendum on health care. Americans should vote yea or nay on a system that provides basic health care for all.
A federal ballot measure like this has never been held in our country. A referendum would ask Americans to focus on the proposal rather than on a candidate or political party. There’s reason to believe that a direct vote could help us solve our health care quagmire.
Dr. Ricardo Nuila, American Health Care Is Dying. This Hospital Could Cure It., New York Times (free access), March 9, 2023, American Health Care Is Dying
[A]s many as 30% of nurses at some Boston hospitals were fixed contract or traditional traveling nurses during the height of the pandemic. In addition to sapping hospitals of much-needed permanent nurses, the reliance on travel nurses has cost the industry $1.5 billion.
Newest ‘State of Nursing in Massachusetts’ Survey Reveals Unsafe Conditions and RN Burnout as True Causes of Statewide Staffing Crisis as Hospitals Overspend on Temporary Nurses and Patient Care Quality Drops, Massachusetts Nurses Association, March 29, 2023, MNA Survey
“After a time, we couldn’t care for her ourselves. After all, we’re all in our 60s, too.”
Hua Ailing, a post office accountant in a small county in Anhui Province, China, Deaths of Seniors in Hospital Fire Point to China’s Elder Care Shortfall, New York Times (free access), May 8, 2023, China’s Elder Care Shortfall
[Ricardo Nuila, a practicing physician and associate professor at Baylor College of Medicine] asks a simple but profound question: “Why do some people benefit from health care in America, while others are excluded?” His answer is equally simple: Because the principal goal of the American health care system is to make money, period.
Made to Care For Those Left Behind, This Hospital Leads the Way, *New York Times, May 2, 2023 (updated), Made to Care
High-quality early care and education and long-term care are critical to our Nation’s economic growth and economic security. Early care and education give young children a strong start in life, while long-term care helps older Americans and people with disabilities live, work, and participate in their communities with dignity. Access to both types of care is also critical to our national security because it helps ensure the recruitment, readiness, and retention of our military service members. . .
A sizeable majority of families and individuals in the United States who require care cannot access the affordable, high-quality care they need. The markets for child care and long-term care for persons with disabilities and older adults who need support in their homes and communities fail to deliver enough high-quality care because of a persistent gap between the costs of providing this care and the prices families can pay.
Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, The White House, April 18, 2023, Increasing Access to High-Quality Care
“It’s … with great hope that I declare Covid-19 over as a global health emergency. However, that does not mean Covid-19 is over as a global health threat.”
WHO Director-General Tedros Adhanom Ghebreyesus, WHO declares end to Covid global health emergency, STAT News, May 5, 2023, WHO Declares End to Covid Emergency
“For 75 years, CDC and public health have been preparing for Covid-19, and in our big moment, our performance did not reliably meet expectations. My goal is a new, public health action-oriented culture at CDC that emphasizes accountability, collaboration, communication, and timeliness.”
Dr. Rachel Walensky, CDC Director, in August 2022, CDC Director Rochelle Walensky to step down, STAT News, May 5, 2023, Walensky to Step Down
“This warehousing of children is beneath us. If we saw children being treated this way anywhere else, we would see it as a form of abuse or neglect. We choose to allow these children to languish. And that is morally unconscionable. It is willful and collective abuse.”
Kenneth Goodman, who founded and directs the medical ethics program at the University of Miami Miller School of Medicine, ‘Just another baby for them.’ Parents, feds fight for kids stuck in Florida nursing homes, Miami Herald, May 7, 2023 (updated), Just Another Baby for Them
May 1, 2023
When residents of a country are shut out of the flow of information critical to knowledge of how their taxes are utilized, they have no say in governance, and, therefore, no real democracy. They cannot advocate intelligently and effectively for their rights as funders of programs that should benefit them. When they are kept in the dark and subjected to what monied interests choose to tell them, they lose their right to expect a competently run program for which they are paying.
David Kingsley, PhD, The AHCA/NCAL & Brown University Long Term Care Data Cooperative: A Horrifying Move by the Nursing Home Industry to Control Nursing Home Data Analytics. Tall Grass Economics, April 30, 2023, LTC Data Cooperative
We can work to build an even better community for our older residents by:
- Not limiting our thinking about aging,
- Exploring and combating stereotypes,
- Emphasizing the many positive aspects of aging,
- Inspiring older adults to push past traditional boundaries, and
- Embracing our community’s diversity.
Sample Proclamation, Administration on Community Living, Older Americans Month 2023, Sample OAM Proclamation
“It’s banging on the door. It’s getting harder. It’s getting tougher. Every day gets tougher, but that’s the way it is. Who do I see about that?
“All these subtle ways it gets you. You don’t die from Parkinson’s. You die with Parkinson’s. I’m not gonna be 80.”
Michael J. Fox, age 61 who has had Parkinson’s Disease for 32 years, Michael J. Fox talks mortality, Parkinson’s: ‘I’m not gonna be 80.’ *Washington Post, April 30, 2023 (updated), Not gonna be 80
“Forty-two disabled veterans, five of whom were named in the indictments. . . were crowded into a locked space designed to house at most 25 patients. As one witness told the grand jury, there were ‘bodies on top of bodies.’ ‘[T]ightly packed together and sick,’ and ‘coughing on top of each other,’ the veterans at this state-run facility were left in their ‘johnnies,’ were placed in beds less than two feet apart, and were deprived of adequate hydration and food.”
Massachusetts Supreme Court Justice Dalila A. Wendlandt, writing for the court majority, Justice for Holyoke home victims back on track, *Boston Globe, April 29, 2023 (Updated), Justice for Holyoke Home
“Walking directions are a lot different than rolling directions. Potholes can tip over a chair. The quickest route isn’t always the safest route.”
Jake Haendel, age 34, who has a rare neurological disorder, After a harrowing life journey, Boston entrepreneur looks to build a ‘Waze for accessibility’, *Boston Globe, , April 29, 2023, Waze for accessibility
Research over decades has shown this strong association: The higher the level of nurse staffing, the more likely you are to be discharged alive, or to have a good outcome. Ratios sound bureaucratic, but they tell a real story: If you are hospitalized, your nurse might be assigned four patients, or they might be assigned, for instance, eight patients. That’s not unusual. What that ratio means for you, though, is that you may or may not get the care that you need, because a nurse can’t be in eight different places at once.
Sarah DiGregorio on how supporting nurses helps all of us, Sunday Morning (CBS) (video report), April 30, 2023, Supporting Nurses
The purpose of nursing is to maximize people’s health and well-being. So, we need to make sure nurses have the working conditions that make it possible for all of us to get the care we deserve.
Sarah DiGregorio on how supporting nurses helps all of us, Sunday Morning (CBS) (video report), April 30, 2023, Supporting Nurses
We don’t want to be caught off guard again. Governments at all levels should be continuing to build the virus-tracking capacity that was hastily created as the Covid crisis grew.
Our Covid Data Project Is Over, but the Need for Timely Data Is Not, *New York Times, April 30, 2023, Timely Data
There is good evidence that masks can protect people who use them correctly and consistently.
How Well Does Masking Work? And Other Pandemic Questions We Need to Answer, *New York Times, April 30, 2023, Does Masking Work
“Of course, we could have done better. We tried. If you look at what I was saying in the months before I stepped down, and what Ashish Jha is saying to this day, it’s that if you are vaccinated and boosted and have available therapy, you are not going to die, no matter how old you are. We were very explicit in saying that. Did people hear that? I don’t know. How loud do you have to say something for people to understand? How often have you got to say it?”
Dr. Anthony Fauci, Dr. Fauci Looks Back: ‘Something Clearly Went Wrong’, *New York Times Magazine, April 24, 2023, Dr. Fauci Looks Back
“Private equity sees a huge opportunity to take smaller businesses that lack sophistication, lack the ability to grow, lack the capital investment, and private equity says, ‘We can come in there, cobble these things together, get standardization, get visibility and be able to create a better footprint, better access, and more opportunities.’”
But, “it is a little scary. There are people that have no business being in health care” looking to invest in hospice.
Steve Larkin, CEO of Charter Healthcare, a hospice chain owned by the private equity firm Pharos Capital Group, Fortune, July 27, 2023, Hospices have become big business for private equity firms, raising concerns about end-of-life care, Hospices as Big Business
Nursing facilities are a multi-billion-dollar industry that can be inefficient, cruel, and lethal.
Margaret Morganroth Gullette, The neglect in nursing facilities is no accident, WBUR Cognoscenti, May 1, 2023, Neglect in Nursing Homes
The crisis across the care continuum is urgent. But out of sight is out of mind until it’s you/your family. There’s an important comment by former Sen Richard Moore about the need for transparency. Why do for-profit companies buy nursing homes if they’re unprofitable?
State Senator Patricia Jehlen (D- Somerville), Senator Jehlen on Twitter, February 27, 2023
April 24, 2023
“Different people who need assistance may need it in different ways. So, asking them how you can help them is amazingly helpful. It allows the individual who’s in need of assistance to maintain a sense of self, to maybe feel a little less helpless, and maybe even a little less vulnerable.”
Mike Huddleston, who has a degenerative neuromuscular condition, After Mike fell on a busy sidewalk, a stranger helped in just the right way, NPR My Unsung Hero from Hidden Brain, April 24, 2023, Fell on Busy Sidewalk
“For decades, disabled people have fought to live in our homes and communities, not in institutions. A key element to this fight is enhancing wages, benefits, and job conditions for direct support workers who provide the necessary services to ensure community integration. Individuals in this workforce, who are predominantly disabled women of color, must often work multiple jobs with no benefits to make ends meet.”
Maria Town, President and CEO of American Association of People with Disabilities, in response to the issuance of the Biden-Harris Executive Order on the care economy, AAPD Applauds Biden-Harris Executive Order on the Care Economy, American Association of People with Disabilities, April 18, 2023
There are an estimated 1.5 million active adult guardianship cases across the country. It’s a massive industry, with guardians controlling an estimated $50 billion in assets. Advocates for guardianship reform say a lack of oversight leads to many reported instances of fraud and abuse.
Local Spotlight: The dangers of guardianship programs, 1A NPR, April 18, 2023
“President Biden took the significant step today of recognizing the value of family and paid caregiving across the life cycle including for people with disabilities.”
David Goldfarb, director of policy at The Arc, Biden Signs Executive Order Aimed At Improving Care For People With Disabilities, Disability Scoop, April 19, 2023, Biden Signs Executive Order
“I didn’t serve my country, work, and pay taxes for 44 years just to let my voice fade away or see younger generations lose benefits I fought for my whole life…I urge you to not cut or change benefits for Social Security, Medicare, and Medicaid. We are the richest democracy on earth, we can afford to allow workers to retire with dignity.”
Dave McLimans, a retired steelworker from Parkesburg, PA, Beyond the 9 to 5: Dismantling Barriers and Building Economic Resilience for Older Workers, U. S. Senate Special Committee on Aging, April 20, 2023, Case Holds Hearing
The United States has 4% of the world’s population but 16% of COVID-19 deaths.
The COVID Tracking Project Part 1, The PRX Exchange, April 18, 2023
People are rendered to a state of non-personhood, in the name of protection.
Morgan Whitlatch, Center for Public Representation, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023, Guardians Dark Side
The [guardianship] system is a profit center. It is not benevolent. It is not altruistic.
Rick Black, guardian reformer, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023, Guardians Dark Side
Across the US, uneven oversight and accountability mar the legal process by which adults are placed under guardianship. The lack of rigor has opened the door to stolen funds, judicial errors, bulging caseloads, and legal entanglements for vulnerable people.
Guardians’ Abuses Persist as One State’s Easy Fix Goes Unmatched, Bloomberg Law, March 10, 2023, A Solution
“There shouldn’t be a difference in the way that you treat athletes, be it Olympians, able-bodied athletes or athletes with disabilities.”
Jonas Oliveira, head of content for the International Paralympic Committee, Edgy or insensitive? The Paralympics TikTok account sparks a debate, NPR, April 24, 2023, Edgy or insensitive
“A full analysis of nursing home cost reports, including charges by related parties, could determine whether and how much nursing homes really need to provide quality care for their residents.”
Former State Senator Richard T. Moore, Chair DignityMA Legislative Workgroup, How Do We Know if Nursing Homes are Struggling?, Response to The Daily News article (April 24, 2023), April 24, 2023
April 17, 2023
Asked whether politicians cared very much about the needs of Americans in their 70s and 80s, not a single participant thought politicians did. “They take one look at a senior and say, ‘He’s not producing a thing. He’s doing nothing good for the people.’ And it’s wrong. They just look at us like we’re numbers,” said Francis. “So, they look at us as irrelevant, I guess is the word. That’s how I feel,” said Elaine.
What Happened to America? We Asked 12 People in Their 70s and 80s. New York Times (free access), April 16, 2023
“The decision to tolerate preventable deaths in disproportionately vulnerable groups, in exchange for the convenience of more able-bodied, younger, wealthy, and white individuals, is unethical and demonstrates a reckless disregard for the lives of communities disproportionately impacted by COVID.”
The People’s CDC, a coalition of public health experts, Covid is still a leading cause of death as the virus recedes, *The Washington Post, April 16, 2023
“The non-covid death rate has not returned to pre-pandemic levels. We believe that there’s an invisible or hidden burden of covid that has persisted essentially into the present, and those deaths are going unrecorded.”
Andrew Stokes, a Boston University researcher who is part of a team investigating the rise in excess deaths, Covid is still a leading cause of death as the virus recedes, *The Washington Post, April 16, 2023
The same nature that leads us to rock the babies and volunteer for Meals on Wheels leads us to care for the earth. We are empathic in the broadest sense. We care for all who suffer, whether that is a child, an aquifer, a polar bear, or a forest.
Grandmothers of the World, Unite, New York Times (free access), April 16, 2023
It has been proven that companies that attract and retain workers with disabilities have more success with their customer-facing interactions, morale, and financial performance. People with disabilities add to the bottom line.
Diversity, equity, and inclusion must include people with disabilities, *Boston Globe, April 17, 2023
“The rapid rise and geographic spread of cases is concerning and emphasizes the need for continued surveillance, expanded lab capacity, quicker diagnostic tests and adherence to proven infection prevention and control.”
CDC epidemiologist Meghan Lyman, MD, CDC: C. auris spreading at ‘alarming’ rate in U.S. healthcare facilities, McKnight’s Long Term Care News, March 22, 2023
“One of the real pain points of this job [as a home health aide] is having a felt experiential day-to-day sense of why this work is so important [a]nd then feeling societally that it is invisible and not recognized.”
Emma Tsui, an associate professor at the CUNY School of Public Health, Demand for home health aides is soaring. So why are they still so undervalued?, STAT News, April 14, 2023
“We are at a critical point for the Chelsea Veterans’ Home. [The] home had deteriorated into chaos. With a new Administration, we have an opportunity to set this ship right. Failure is not an option.”
State Senator John Velis, co-chair of the Legislature’s veterans’ affairs committee, Can Maura Healey fix the Chelsea Veterans’ Home?, *The Boston Globe, April 16, 2023
“These past few years have been incredibly difficult for our veteran community. They deserve our very best and as a fellow veteran myself, I’m committed to … ensuring that our office can honorably serve those who served us.”
Dr. Jon Santiago, new Secretary of Veterans’ Services, Can Maura Healey fix the Chelsea Veterans’ Home?, *The Boston Globe, April 16, 2023
April 10, 2023
[Elder] abuse is experienced by about one in 10 community-dwelling older adults each year. The COVID-19 pandemic created more opportunities for elder mistreatment with people sheltering in place and more isolated.
Utilizing Public Health to Address Elder Abuse, National Center on Elder Abuse, April 6, 2023
“There are not a lot of people in nursing homes with children under 25. This would absolutely relieve nursing homes of any accountability for a wrongful death.”
Zayne Smith, director advocacy at AARP Florida, Suing Florida nursing homes for wrongful death will get harder if this bill passes, Tampa Bay Times, March 7, 2023
“The decision [by the Commonwealth to relax masking mandates] has been made behind closed doors without any input by people most impacted.”
Dr. Lara Jirmanus, a primary care physician and instructor at Harvard Medical School who cofounded the Massachusetts Coalition for Health Equity, Health groups call on Mass. to keep mask mandates in health care settings, *Boston Globe, April 5, 2023 (updated)
“Some [residents] have been told they will be homeless if they do not accept proposed placements, often far from their communities and against residents’/families’ needs and choice.”
From the complaint filed with the Massachusetts Office of the Attorney Genera by Stavros Center for Independent, Fast closures of nursing homes in Massachusetts raise alarms and worry over patients, NBC News, April 4, 2023
April 3, 2023
There is no one way to be autistic — each individual with autism experiences it differently — but together, autistic people make industries, communities, and our Nation stronger. Today, we celebrate the achievements of neurodiverse people everywhere and champion the equal rights and dignity of all those living on the autism spectrum.
President Joe Biden, A Proclamation on World Autism Awareness Day, 2023, The White House, March 31, 2023
In its most recent survey of unpaid caregivers, published in 2020, AARP found that there were nearly 42 million people caring for an aging friend or family member — more than tenfold the number in 1989. The fastest growth is happening among younger generations; the share of caregivers who are under 45 quintupled over the past two decades, to nearly 66 percent from 16 percent, as their parents — many of the 72 million baby boomers — are living longer but doing so with more chronic diseases and disability and less means than the generation before them.
The Agony of Putting Your Life on Hold to Care for Your Parents, *New York Times Magazine, , March 28, 2023
“In this era, any civil rights case that goes to the court gives one agita.”
Robert Dinerstein, director of the Disability Rights Law Clinic at American University, referencing a case before the U.S. Supreme Court regarding the Americans with Disabilities Act, Supreme Court’s new target: the Americans with Disabilities Act, *Boston Globe, March 29, 2023
“Exercise is not just for the young,” said, who was not involved in the research. “Older individuals can also reap the benefits of exercise and should be encouraged to do so.
Mikel Izquierdo, professor of health sciences at the Public University of Navarra in Spain, Exercise with a buddy. Your brain will thank you for it. Washington Post, March 29, 2023
“Socializing exercises our cognitive function, providing more resilience to late-life decline — a concept known as building cognitive reserve. Being more socially active may also encourage healthy lifestyle behavior, and reduce stress.”
Andrew Sommerlad, associate professor of psychiatry at the University College London, Exercise with a buddy. Your brain will thank you for it. Washington Post, March 29, 2023
“People are living longer. This is an expensive state for people. And we need to do everything we can to make life more affordable for seniors as they age.”
Governor Maura Healey, ‘An expensive state.’ Healey says tax and budget plans will help struggling seniors, *Boston Globe, April 1, 2023 (updated)
“Ready? I’ve wrapped my head around being dead, certainly. Not sure if I’ll ever really be ready. It’s not like packing a bag and standing outside waiting for a taxi.”
A 60 year old dying man in conversation with his physician, As a Doctor, I Know Being Ready to Die Is an Illusion, *New York Times, March 29, 2023
I once felt that I would rather die than go blind. Now I feel the opposite. Daily life has a renewed delight and vigor. I am learning new things constantly. The most ordinary tasks, like going to the post office, have become terrifically interesting. In terms of everyday life, I feel that I am finally in there, more mindful and alert, more fully present. I have chosen curiosity over despair.
Edward Hirsch, a poet, a critic, I Am Going Blind, and I Now Find It Strangely Exhilarating, *New York Times, March 28, 2023
Despite their notable political differences, Texans and Californians agree. Supported decision-making advances self-determination. We’re not surprised. Making your own decisions is at the heart of what it means to be a person.
Britney Spears Called Out Her Guardianship. Supported Decision-Making Offers a Different Approach. *New York Times, April 3, 2023
“[Massachusetts Commission for the Blind head David D’Arcangelo is] an inept and destructive leader. I’ve never seen the agency deteriorate as much as it has under him.”
Amy Ruell, a former member of the commission’s statutory advisory board, Inside the state commission for the blind: alleged verbal abuse, shrinking services, questionable spending, *Boston Globe, April 2, 2023
March 27, 2023
“This proposal [to establish an Executive Office of Housing] to me is supreme. I’m excited to work with you [Lt. Gov. Kim Driscoll] and to work with the new secretary.”
Rep. Antonio Cabral, Joint Committee on Housing, Lawmakers Warm to Housing Secretariat Plan, *State House News, March 27, 2023
Releasing older adult prisoners poses a very low danger to communities overall, and in cases of prisoners with debilitating health problems, many are unable to commit new crimes.
Broken and Underutilized: Understanding Compassionate Release Programs for Older Adult Prisoners, Bifocal – American Bar Association, January 19, 2023
“People with disabilities could lose access to home health care and, with it, the ability to stay in their homes — which, by the way, shows it extends life of the people. People would much rather stay, if they could, just with a little bit of help in their own homes rather than go to a home. And it’s less expensive. Medicaid also pays for nursing home care for about two thirds of all Americans who live in nursing homes. Well, it’d be different if they were able to stay home.”
President Joe Biden, Home Health Care ‘Extends Lives’ and Is ‘Less Expensive’, Home Health Care News, March 24, 2023
Nursing homes that conducted staff surveillance testing more regularly experienced significantly lower rates of COVID infections and deaths among residents, according to a new study [published in the New England Journal of Medicine.]
More staff COVID testing saved nursing home resident lives, Futurity, March 24, 2023
“Please, Sir, I want some more!”
If Dickens were alive today, and living in Massachusetts, he might easily have chronicled the plight of nursing home residents, and their equally bare bones Personal Needs Allowance!
Richard T. Moore, Dignity Alliance Massachusetts’ Legislative Workgroup Chair, “Please, Sir, I want some more!”, GSA [Gerontological Society on Aging] Connect Open Forum, March 25, 2023, [Accessible online only to GSA members.]
Boston is one of the nation’s most expensive cities. More than seven in 10 older people living alone here — and 45 percent of older couples — lack the minimum income required to cover necessary expenses, according to February data from the University of Massachusetts Boston’s Gerontology Institute. For them, life is a daily struggle to maintain dignity and make ends meet.
‘I have to take my time.’ Growing old in Boston without much money is an everyday stress test. *Boston Globe, March 25, 2023
March 20, 2023
“It’s this really enormous financial bomb sitting out there that most people are just hoping won’t hit them. There’s an incredible amount of confusion and denial.”
Marc A. Cohen, co-director of the LeadingAge LTSS Center at the University of Massachusetts at Boston, Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)
“[The cost of long-term care] has to be addressed because ultimately it will be a societal crisis.These are the schoolteachers and the firefighters, the working people who take care of all of us, who cannot afford the [senior housing] that is being built out there right now.”
Beth Mace, chief economist for the National Investment Center for Seniors Housing & Care (NIC), Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)
“Even before the pandemic, the long-term care system in this country was broken. It’s too expensive for most people, yet it needs further investment to ensure front-line caregivers receive a competitive wage and facilities continue to modernize. . . You’re combining housing and health care, and most Americans haven’t thought about or can’t afford to plan for this expense,”
LaShuan Bethea, executive director, the National Center for Assisted Living, Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)
[Beth Roper] is baffled there is no safety net for families in her situation. The Ropers saved for college, they paid off their house, they tithed at church, and they paid thousands of dollars in taxes for more than 70 years of combined work.
“We did everything our country asked us to do.”
Beth Roper, whose husband, Doug Roper, was a history teacher and wrestling coach and began showing signs of forgetfulness that seemed to accelerate in 2018, the same year he retired, Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)
“We should all seek age and disability justice. Given a vast retirement savings crisis and increasing ill health, Gen X and Gen Z may also need a bed someday.”
By Margaret Morganroth Gullette, Everyone in a nursing home deserves a single room, *Boston Globe, March 15, 2023 (updated)
“How many years do I have left? I want to live those as well as I can. But to some degree, you lose your dignity.”
Alex Morisey, a 82-year-old man who lives in a Philadelphia nursing home, In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023
In a long-term care system that subjects some of society’s frailest to daily indignities, Medicaid’s personal needs allowance, as the stipend is called, is among the most ubiquitous, yet least known.
In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023
“I was shocked. It’s about dignity for these people.”
Virginia State Rep. Jennifer Wexton, who in 2019 introduced a bill to raise the minimum allowance to $60 and cement annual increases tied to those for Social Security but didn’t even get a hearing, In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023
Nursing home residents often must cede control of everything from how often they get a shower to what they eat. With no financial wiggle room, even more autonomy evaporates, putting out of reach the chance to take a taxi to see a friend, to get lost in a newly purchased book, or to escape the monotony of the cafeteria with some take-out food.
In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023
“We take patients who are going to die of their diseases within a three-month period of time, and we force them into a denial [issued by a Medicare Advantage insurer] and appeals process that lasts up to 2.5 years. So, what happens is the appeal outlasts the beneficiary.”
Chris Comfort, chief operating officer of Calvary Hospital, a palliative and hospice facility, Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need, STAT News, March 13, 2023
“They are looking at our patients in terms of their statistics. They’re not looking at the patients that we see.”
Medical director of a post-acute care facility, Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need, STAT News, March 13, 2023
“There’s no doubt we have a full on housing crisis in Massachusetts. There’s not enough housing to meet the current demands at all levels — not market rate, not affordable, certainly not truly affordable for our most vulnerable populations. And we really are trying to partner with communities and make sure they have the tools they need. We’re focused on production.”
Lt. Governor Kim Driscoll, On Big Issues, Driscoll Taking “We’ll See” Approach, *State House News, March 13, 2023
“I still struggle to make out every word. It’s kind of like a foreign language you speak very well but not completely, so you’re always a little behind. . . I wish I had gotten [hearing aids] sooner because I missed a lot.”
Mary Louise Kelly, co-host of NPR’s daily newsmagazine “All Things Considered,”, NPR’s Mary Louise Kelly talks about living with hearing loss, *Washington Post, March 19, 2023
“It’s better for me to be under shelling than to be there. It was living hell.”
Viktor Krivoruchko, 54, who had a stroke and had been placed in an Ukrainian nursing home, War forces thousands of disabled Ukrainians into institutions, *Washington Post, March 19, 2023
“Despite the huge challenges we are facing, especially for people with disabilities, we are not stopping our effort to move people out of institutions.”
Oksana Zholnovych, Ukraine’s minister of social policy, War forces thousands of disabled Ukrainians into institutions, *Washington Post, March 19, 2023
“The rule creates a framework that will result in a shared understanding of quality community living.”
Alison Barkoff, Acting Administrator of the Administration for Community Living, Joint Statement from the Centers for Medicare & Medicaid Services (CMS) and the Administration for Community Living (ACL): Implementation of the Home and Community-Based Services Settings Regulation, The Centers for Medicare & Medicaid Services (CMS) and the Administration for Community Living (ACL), March 17, 2023
“You have to remind yourself that you know who you are and you are the person who can reaffirm and comfort the person who had reaffirmed and comforted you for so long.”
Anne Basting, MacArthur Fellowship recipient based on her 30 years of working with persons with dementia, This Conversation Changed the Way I Think About Dementia, First Person / New Times Podcast, March 16, 2023
“The bill’s workforce funding is necessary to ensure there are enough health professionals, including licensed practical nurses (LPNs) and certified nursing assistants (CNAs), to meet the needs of vulnerable residents under state care while we transition beyond the COVID-19 public health emergency.”
Release from Governor Healey’s office, Healey Adds $734 Million To Expanding Spending Agenda, *State House News, March 17, 2023
“We know it’ll be a transition for people to go from not paying any premiums for their health coverage to potentially have to paying some premium. So, we don’t want people to assume they can’t afford it. We want people to come check out their options.”
Health Connector Executive Director Audrey Morse Gasteier, Blue Envelopes Signal Start of Big Health Insurance Project, *State Health News, March 9, 2023
“CMS should adopt strong nursing staff-to-resident ratios to ensure workers are not overburdened and unable to meet their patients’ needs, it is clear that chronic understaffing contributes to high rates of stress, injury, and burnout among nursing assistants, and ultimately to high rates of turnover. Thus, we believe that creating a robust staffing standard will also go a long way towards improving the quality of nursing home jobs, which in turn will actually help attract more workers and resolve current workforce shortages in this industry.”
Letter by U.S. Representative Lloyd Doggett (D-TX) and Jan Schakowsky (D-IL) and signed by 113 representatives, ‘Imperative’ to finalize staffing rule this year, dozens of House members tell CMS, McKnight’s Long-Term Care News, March 20, 2023
The average weekly pay for a travel nurse in January was $3,077 – 67% higher than the rate in January 2020, according to a report by Vivian Health posted to Becker’s Hospital Review. The average weekly pay jumped 99.5% from January 2020 ($1,896 per week) to December 2021 ($3,782 per week). But the wages reached a “new floor” in July 2022 when they hit $2,997 per week. . . Even more drastic, Brendan Williams, president and CEO of the New Hampshire Health Care Association, told McKnight’s in December 2021 that while nursing homes were offering $17 per hour, plus shift differentials for nursing assistants, staffing agencies were paying as high as $69 per hour, plus charging facilities agency fees on top of that.
Many states now looking at price-gouging legislation to combat soaring staffing agency nursing costs, McKnight’s Long-Term Care News, March 20, 2023
March 13, 2023
“This is outrageous. [The Northeast Health Group facilities in western Massachusetts] should be able to continue operating [under state control] while there is a more deliberate, more careful, more rational, more caring way to empty the buildings.”
Paul Lanzikos, Coordinator, Dignity Alliance Massachusetts, ‘This is outrageous’: Advocates urge state to take control of four nursing homes slated to close, *Boston Globe, March 9, 2023 (updated)
“Transitioning residents with complex medical and emotional needs is a delicate process, and transfer trauma is a major concern with residents who have been haphazardly placed. “Some residents may not survive this transition, or may suffer physically, emotionally, and socially.”
Stavros Center in its complaint to the Massachusetts Dept. of Public Health, ‘This is outrageous’: Advocates urge state to take control of four nursing homes slated to close, *Boston Globe, March 9, 2023 (updated)
“They told us if we didn’t find a place for a loved one, they would relocate them, and it could be on the Cape, it could be Pittsfield, wherever there was a bed. . . A lot of staff jumped ship right away. They kept trying to bring in staff from agencies, but a lot of times they were short staffed and if a loved one wasn’t there to watch out, forget it. . . I would like to see things revamped and people being treated more like human beings.”
Judy, whose 86-year-old father moved out of Willimansett West in Chicopee, ‘This is outrageous’: Advocates urge state to take control of four nursing homes slated to close, *Boston Globe, March 9, 2023 (updated)
“The company [Northeast Health Group] has been very silent with us, very silent with the state. They won’t let us do our jobs.”
Crystal Bouchie, business representative for United Food and Commercial Workers Union Local 1459 in Springfield commenting on the closure of four nursing homes in western Massachusetts, Union says company shuttering Hampden County nursing homes is ghosting employees, Mass.com, March 10, 2023
Guardianships have a bad reputation. Guardians are far too easy to appoint, often have more power than they need, and may become too greedy, failing to protect the people they are guarding. The problem is lack of oversight.
Modern Laws and Out-of-Court Solutions Can Advance Guardianship, Bloomberg Law, March 9, 2023
It’s said that when the only tool you have is a hammer, you tend to see every problem as a nail. Plenary guardianship has long been seen as the law’s hammer to deal with the “problem” of the alleged incapacity of people with disabilities and older persons. Even when guardianship functions well—and stories of financial, emotional, and other forms of abuse show it often doesn’t—it can deny the right of adults with disabilities to make their own decisions, with or without support.
Courts Must Revamp Approach to Guardianship, a Potent Legal Tool, Bloomberg Law, March 9, 2023
Supported decision-making, which originated in British Columbia, has achieved increasing recognition in US legislation and court decisions. It is a far more appropriate tool for the toolbox than guardianship.
Courts Must Revamp Approach to Guardianship, a Potent Legal Tool, Bloomberg Law, March 9, 2023
“The [guardianship] system is a profit center. It is not benevolent. It is not altruistic.”
Rick Black, a former corporate executive who has become a full-time guardian reformer, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023
“I guess I was an idealist. I thought the judge was going to listen to me and weigh the evidence and be fair.”
Lorraine Mendiola, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023
“People are rendered to a state of non-personhood, in the name of protection.”
Morgan Whitlatch, Center for Public Representation, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023
“We want to do everything we can to make it easy for patients and their families. It’s so, so important and making people travel huge distances doesn’t get you there. We have got to make sure that’s resolved in the right way.”
Massachusetts Governor Maura Healey responding to the closure of four western Massachusetts nursing homes, Governor Healey weighs in on proposed western Massachusetts nursing home closures, WWLP-TV 22News, March 10, 2023
Lawyers and advocates estimate there are at least 3,000 such “unbefriended” people — most are older adults, though some are younger with brain injuries, intellectual disabilities, or mental health problems in need of a guardian.
Who will be guardians for legions of ‘unbefriended’ elders? A new initiative tries to address an urgent and growing problem in Mass. *Boston Globe, February 27, 2023
The unpaid care provided by the 780,000 caregivers in Massachusetts is valued at $15.1 Billion.
Family Caregivers in Massachusetts Provide $15.1 Billion in Unpaid Care to Loved Ones, AARP, March 8, 2023
“Independently living, with dignity and respect, supported by jobs that pay a living wage, is the only future I’m going to accept.”
State Senator Lydia Edwards, ‘Fighting for my life’: Disability advocates call for higher wage for PCAs, WGBH, March 2, 2023
“PCAs are literally my lifeline. The work that my PCA does is not easy. It’s close, personal, intimate care.”
Dan Harris, who works in the community living advocacy program at the Boston Center for Independent Living, Personal-care attendants fight for higher wages, *Boston Business Journal, March 7, 2023
March 6, 2023
“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I’m living in a wheelchair.”
Judy Heumann, Activist Judy Heumann led a reimagining of what it means to be disabled, NPR All Things Considered, March 4, 2023
“Judy Heumann was a trailblazer – a rolling warrior – for disability rights in America. After her school principal said she couldn’t enter Kindergarten because she was using a wheelchair, Judy dedicated the rest of her life to fighting for the inherent dignity of people with disabilities.”
President Joe Biden, Biden remembers disability rights activist Judith Heumann as ‘rolling warrior’, The Hill, March 5, 2023
“Today’s authorization of the first OTC test that can detect Influenza A and B, along with SARS-CoV-2, is a major milestone in bringing greater consumer access to diagnostic tests that can be performed entirely at home.”
Jeff Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health, FDA Authorizes First Over-the-Counter At-Home Test to Detect Both Influenza and COVID-19 Viruses, U. S. Food and Drug Administration, February 24, 2023
Fueled, in part, by the devastating COVID-19 death toll in nursing homes, leaders in some states are not waiting for federal action to ensure public dollars do not pay for poor care. New York, for instance, set requirements for how Medicaid payments could be spent. When more than 200 nursing homes sued the state to block the new law, they revealed budget details usually hidden from the public and regulators. One fact stood out: The homes spent most of their government Medicaid funding on expenses other than face-to-face care of residents. In total, the group would have had to return $511 million to the state in 2019 had a key requirement of the new law been in effect: that 70% of Medicaid be spent on direct care.
Biden wants more nursing home staff; owners say they need more funding, USA Today, March 3, 2023
“This way of paying and supporting nursing home care in this country is completely broken. From an industry perspective, this is a flawed model: overpaying with one public payer and underpaying with the other and hoping for the best.”
David Grabowski, a Harvard University researcher and member of the congressional Medicare payment commission, Biden wants more nursing home staff; owners say they need more funding, USA Today, March 3, 2023
“Nursing homes should protect the health and well-being of every resident. . . This case demonstrates that we will hold responsible people accountable when they pocket federal funds while providing substandard care.”
Carla Freedman, United States Attorney for the Northern District of New York, Attorney General James Secures Over $7.1 Million from Former Saratoga County Nursing Home for Years of Fraud and Neglect, Office of the New York Attorney General, February 27, 2023
“I don’t think we should be thinking of 90-plus or even 100 as extreme aging anymore. We should be helping people prepare for this longevity.”
Michael “Mick” Smyer, a clinical psychologist and national expert on aging. When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023
“More than 90 percent of centenarians are functionally independent in their early nineties. … Semi-super-centenarians (ages 105-109 years) and [especially] supercentenarians (age 110+), usually delay such age-related diseases towards the ends of their lives”; and “a substantial proportion of centenarians live with age-related diseases usually associated with significant mortality, for more than 20 years.”
Dr. Thomas Perls, an international expert on longevity with Boston University Chobanian & Avedisian School of Medicine, When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023
“A group of 7-year-olds are more alike than a group of 77-year-olds. With increasing age comes increasing individual differences.”
When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023
Aaliyah sang (and then, sadly, demonstrated when she died at 22), “Age ain’t nothing but a number.”
Aaliyah, a singer who died at age 22, When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023
“The fact that Norman Lear just turned 100 is the least of his accomplishments. Lots of people do it. You turn on the Today show and you see a bunch of folks celebrating their centennial. . . . Congratulations on your first hundred, my friend.”
George Clooney, When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore, *Boston Globe, February 19, 2023
“The Governor’s proposal is a strong, welcome initiative which we hope turns the tide in our present crisis.”
Maura Sullivan, Senior Director, The Arc of Massachusetts, Disability Advocates Hope Healey Budget “Turns the Tide” On Staffing Crisis, *State House News, March 2, 2023
“PTSD Coach is an exceptionally valuable tool that allows you to tell your own story to yourself. You have to go through the bad stuff to get to the story. And even if you only tell your story to yourself, that’s a lot better than not telling it at all.”
Veteran Army Captain John Kirby IV, Veteran uses PTSD Coach app to cope, Veterans’ Health Care, March 2, 2023
“A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them.”
Patty Berne, disability rights advocates, Disability Justice—in the Workplace (and Beyond), Non-Profit News | Nonprofit Quarterly, February 28, 2023
“Disability justice really comes about because traditional disability rights movements did not center or didn’t center as well the experiences and perspectives of queer, trans, Black, Indigenous, people of color, immigrants, and women. And that’s important, and the list is long for a reason, because it is a call-in to members of the community that had not been in the leadership roles and the decision making in the public leadership as much. It’s critical to have that leadership and opportunity component center folks that have been historically excluded. People with disabilities deserve respect, dignity, and genuine inclusion.”
Adela Ruiz, program and grants lead at the NBA Foundation, Disability Justice—in the Workplace (and Beyond), Non-Profit News | Nonprofit Quarterly, February 28, 2023
It’s never too early to start thinking about how your home can adapt to meet your changing needs over time, as well as what modifications might be required to make it safer, easier to use and more accessible. “And remember that you can make these changes and still maintain the style of your home. A safe home will increase its value and be more comfortable and more accessible for you, for other seniors who visit you, and for family members of all ages.”
Melissa Birdsong, an interior designer and the board chairwoman of Raleigh Village East, a nonprofit organization focused on helping people age in place, 9 tips for creating a home that is safe for aging in place, Washington Post (free access), February 6, 2023
February 27, 2023
“As the climate crisis continues to cause an increase in severe weather events, greater strain is going to be placed on those that care for the most vulnerable. This report [“Left in the Dark”, issued by the Senate Finance Committee and Senate Special Committee on Aging] is a case study of just one in an increasing number of circumstances where elderly or infirm Americans are subjected to difficult conditions due to severe weather. Whether it’s a winter storm, hurricane or wildfire, more must be done to ensure long-term care facilities are adequately prepared to handle these events and care for their residents.”
Senate Finance Committee Chair Ron Wyden, D-Ore., Left in the Dark, Senate Finance Committee and Senate Special Committee on Aging, February 23, 2023
Unwinding [from the special provisions stemming from the COVID-19 public health emergency] will be an immense challenge for Medicaid agencies and enrollees. But states have proven strategies and solutions at their disposal and can take action to minimize coverage losses among eligible enrollees.
States Must Act to Preserve Medicaid Coverage as End of Continuous Coverage Requirement Nears, The Center on Budget and Policy Priorities, February 6, 2023
Most public housing authority policies are even more exclusionary than the federal regulations require, needlessly denying housing assistance to those likely to need it most.
How your local public housing authority can reduce barriers for people with criminal record, Prison Policy Initiative, February 15, 2023
Many of last night’s SAG (Screen Actors Guild) Awards’ most heartfelt—and viral—moments came from Michelle Yeoh, 60, and Jamie Lee Curtis, 64, who took home best lead actress and best supporting actress for Everything Everywhere All at Once. And never change, Jennifer Coolidge (61). As our 50 Over 50 franchise says, success has no age limit.”
SAG Awards’ Best Moments—From ‘Nepo Babies’ To Jenna Ortega And Aubrey Plaza Joining Forces, Forbes Daily, February 27, 2023
Health-related social needs (HRSN) are an individual’s unmet, adverse social conditions (e.g., housing instability, homelessness, nutrition insecurity) that contribute to poor health and are a result of underlying social determinants of health (conditions in which people are born, grow, work, and age). To expand opportunities for states to use Medicaid to address health-related social needs, CMS recently issued new guidance that builds on guidance released in 2021.
A Look at Recent Medicaid Guidance to Address Social Determinants of Health and Health-Related Social Needs, Kaiser Family Foundation, February 22, 2023
“[CMS] is supportive of increasing pre-release services for the justice involved populations and of supporting individuals’ transitioning from institutional settings back into the community, and will continue to work with the state on this component of its proposal.”
Section 1115 Waiver Watch: Approvals to Address Health-Related Social Needs, Kaiser Family Foundation, November 15, 2022
“This is very devastating to Western Massachusetts. I don’t know who to blame more: the administration at the nursing home, or the legislators, or the [state health department]. I don’t know who the real culprit is.” Right now, “I am hoping Mom survives the move.”
Edward Czepiel, a retired Chicopee deputy fire chief who 98-year-old mother was Willimansett Center East in Chicopee which is closing, ‘It’s flooding an already completely congested market.’ Nursing home closures in Western Mass. leave families and hospitals scrambling. Boston Globe, February 26, 2023
“People block it out and memory hole it, but we can’t continue to memory hole something that killed hundreds of thousands of people and continues to kill thousands each week.”
Jennifer Ritz Sullivan, whose mother, Earla Dawn, died due to COVID-19, Salem News, February 23, 2023, Lawmakers consider COVID-19 memorial day
“The loved ones we’ve lost to COVID-19 and those severely harmed by the pandemic — people living with Long Covid and those grieving losses — deserve recognition by the federal government. Memorialization and recognition are essential to the process of healing and recovery.”
Marked by Covid advocacy group statement, Salem News, February 23, 2023, Lawmakers consider COVID-19 memorial day
“It’s considered a violation of the ADA to unnecessarily keep people with disabilities warehoused in institutional settings when people could safely live in a more integrated setting in the community.”
Deborah Filler, Greater Boston Legal Services, A lawsuit could force the state to help thousands of people with disabilities find housing, WGBH, January 26, 2023
“I’m unable to get out, walk around the community. I’m unable to do my own food shopping. I’m unable to do my own laundry. I haven’t seen a full moon in years. You know, those are things that go into making a wholesome life.”
John Simmons, age 74 who is a nursing home resident in Everett and s plaintiff in Simmons v. Commonwealth, A lawsuit could force the state to help thousands of people with disabilities find housing, WGBH, January 26, 2023
Some closures of low-quality homes [are] warranted, but it should be done rationally.
Paul Lanzikos, Coordinator, Dignity Alliance Massachusetts, Three- and four-bed nursing home rooms should be phased out, Boston Globe, February 21, 2023 (updated)
February 20, 2023
“I wouldn’t put a dog in Villages. A dog would get better care than he did.”
Margarette Volkmar, the wife of one of the facility’s residents, Nursing home owners drained cash while residents deteriorated, state filings suggest, NPR Shots, January 31, 2023
The very fact that this essential and sensitive social function [i.e., nursing home care], which ought to be the domain of health professionals and charitable enterprises, is now called an “industry” reflects a total perversion of its purpose.
Would Nursing Home Profiteers Kill Granny to Boost Earnings?, The National Memo, February 20, 2023
You can compare the issue [of a rapidly aging population] to how people used to view climate change: It was happening for many years, but we weren’t paying attention. Societies need to plan for aging, and they’re not well set up to do so. It’s not an in-your-face crisis — it’s a slow-rolling crisis.
Senior societies, *New York Times, February 18, 2023
New York state records show nearly half the state’s 600-plus nursing homes hired real estate, management and staffing companies run or controlled by their owners, frequently paying them well above the cost of services. Meanwhile, in the pandemic’s height, the federal government was giving the facilities hundreds of millions in fiscal relief.
Nursing home owners drained cash while residents deteriorated, state filings suggest, NPR Shots, January 31, 2023
“When you see quality of care decline after an ownership change, the question needs to be asked: What’s going on with the finances?”
Lindsay Heckler, a supervising attorney at Center for Elder Law & Justice in Buffalo, NY, Nursing home owners drained cash while residents deteriorated, state filings suggest, NPR Shots, January 31, 2023
“I never visited Arkansas, and I had no personal connection with the day-to-day operation of any of the nursing homes in Arkansas. The tragedy that had befallen Zelma Grissom was not my fault. I had no control or [oversight] at the premises and I was simply an investor and had no management role in the nursing home at all.”
Joseph Schwartz, the New York state owner of the failed nursing home chain, Skyline Health Care, which at one point owned and operated as many as 114 nursing homes in 11 states including five in Massachusetts, Arkansas court awards $15.7M judgment against nursing home chain over woman’s death, Arkansaw Democrat Gazette, February 19, 2023
“[State Representative Jon Santiago’s] public health expertise and military service make him uniquely qualified to serve as Massachusetts’ first ever Secretary of Veterans’ Services. I’m confident that he will be the leader our veterans need and deserve and will always stand up for their health, safety and wellbeing.”
Gov. Maura Healey, Healey Taps Rep. Santiago for Veterans’ Cabinet Post, State House News, February 17, 2023
“Frontline providers and advocacy organizations have been doing heroic work to provide for families arriving in Massachusetts, but they need continued funding and support.”
Lt. Gov. Kim Driscoll, Healey-Driscoll Administration Files $282 Million Supplemental Budget Bill proposes funding for immediate emergency shelter needs and food security, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, January 31, 2023
“The Healey-Driscoll administration should be commended for moving quickly to elevate Veterans’ Services as a standalone agency with direct report to the Governor. . . The Disabled American Veterans look forward to working with him to serve and support our veterans and their families.
Coleman Nee, former Massachusetts Secretary of Veterans’ Services (2011-2015) and National Line Officer for Disabled American Veterans, Governor Healey and Lt. Governor Driscoll Appoint Rep. Jon Santiago as First Cabinet-Level Veterans’ Secretary, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, February 17, 2023
Why hasn’t the Department of Developmental Services created regulations, policies, guidance, orientation, or amend a home- and community-based waiver to meet the requirements outlined in the 2014 law [https://tinyurl.com/RealLivesLaw] ?
Susan Nadworny, Chair, MA Families Organizing for Change, Real families need Real Lives law enforced, *Boston Globe, February 20, 2023
The nursing home workforce is at levels not seen since 1994.
Long Term Care Jobs Report, American Health Care Association / National Center for Assisted Living, January 2023
Workforce shortages are causing more than half of nursing homes nationally to limit resident admissions.
American Health Care Association, Health care vaccine mandate remains as some push for an end, AP News, February 19, 2023
“The message seems to be, ‘We’re doing great, but everything is getting worse’ [within the Social Security Administration]. The phone service is to the point where I’m telling clients to just go down to the field office in person. You may have to wait two to three hours, but at least you’ll be talking to someone.”
Charles Hall, a disability attorney in Raleigh, N.C., and founder of a blog on Social Security operations, Social Security services to worsen despite budget boost, agency head says, *Washington Post, February 18, 2023
“We must address the significant number of people who are waiting too long for important disability decisions at all levels of the disability process. In particular, we share claimants’ frustration about waiting over seven months on average for an initial disability decision.”
Kilolo Kijakazi, acting Social Security commissioner, Social Security services to worsen despite budget boost, agency head says, *Washington Post, February 18, 2023
“It looks like things are going from bad to worse, and I’m very worried.”
Kathleen Romig, director of Social Security and disability policy at the nonpartisan Center on Budget and Policy Priorities, Social Security services to worsen despite budget boost, agency head says, *Washington Post, February 18, 2023
“There are so many who passed away due to not getting the medical care they needed. Most of these people, they didn’t go in there with death sentences, but they’re dying.”
Teresa Bebeau, whose imprisoned friend died from complications of Covid and cancer in South Carolina, As the Pandemic Swept America, Deaths in Prisons Rose Nearly 50 Percent, New York Times (free access), February 19, 2023
In 2009, about 10 percent of all prisoners were 50 or older; by 2019, that number had jumped to 21 percent, according to the Justice Department.
As the Pandemic Swept America, Deaths in Prisons Rose Nearly 50 Percent, New York Times (free access), February 19, 2023
“You have people just locked up alone for months. If they didn’t have a mental health condition to start with, they certainly do by the end of that.”
Hayden Smith, a criminal justice professor at the University of South Carolina, As the Pandemic Swept America, Deaths in Prisons Rose Nearly 50 Percent, New York Times (free access), February 19, 2023
Eat breakfast like a king, lunch like a prince and dinner like a pauper.
Want to live a longer life? Try eating like a centenarian, *Washington Post, February 14, 2023
Let the sparrow find a home, and the swallow, her nest.
Jerry Halberstadt, Stop Bullying Coalition, Even the sparrow has found a home, Salem News, February 8, 2023
Massachusetts must address persisting inequities and staggering COVID-19 death rates (more than 22,000 in total and nearly 4,700 Massachusetts COVID-19 deaths since the start of 2022), borne disproportionately by older adults, chronically ill and disabled people, and Black and brown communities.
Dr. Lara Jirmanus, Massachusetts Coalition for Health Equity, Carlene Pavlos, Massachusetts Public Health Association, Paul Lanzikos, Dignity Alliance Massachusetts, Equity must be driving force of ongoing Mass. public health policy, Boston Globe, February 14, 2023
February 13, 2023
The demographic divide reflects a debate that continues as the pandemic wears on: What responsibility do those at lower risk from the virus have to those at higher risk — not only older people, but those who are immunosuppressed or who have chronic conditions?
For Older Americans, the Pandemic Is Not Over, New York Times (free access), February 12, 2023 (updated)
“I don’t think people understand how Covid affects older Americans. In 2020, there was this all-in-this-together vibe, and it’s been annihilated. People just need to care about other people, man. That’s my soapbox.”
Vic Caretti, son of Aldo Caretti, a 85-year-old man who died of Covid in December 2022, For Older Americans, the Pandemic Is Not Over, New York Times (free access), February 12, 2023 (updated)
The Covid-19 pandemic will not be without continuing costs. A pre-pandemic normal is unattainable in the short term, no matter how urgently we desire it. The questions for policymakers are these: how high will we allow the societal costs to be, and who will bear the greatest costs? Universal masking policies distribute a small cost across society, rather than shifting the highest burdens of Covid-19 onto populations that have already been made vulnerable by structural racism and other inequities.
Universal Masking Policies in Schools and Mitigating the Inequitable Costs of Covid-19, New England Journal of Medicine, November 24, 2023
Homelessness is an increasingly salient policy issue across all levels of government—as well as a contentious political one. While urban communities and their representatives often frame the issue in terms of public safety, substance use, and mental health, some policy researchers emphasize the relationship between homelessness and housing markets.
Housing Supply and the Drivers of Homelessness, Bipartisan Policy Center, February 7, 2023
“As the proud daughter of a Navy veteran, I understand how important it is that our veterans receive comprehensive services and care.”
Lieutenant Governor Kim Driscoll, Healey-Driscoll Administration Announces Appointments to the Veterans’ Homes Council, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, February 8, 2023
“An abrupt end to the emergency declarations would create wide-ranging chaos and uncertainty throughout the health care system — for states, for hospitals and doctors’ offices, and, most importantly, for tens of millions of Americans.”
The White House said in a statement.
“Nursing homes, like all our healthcare, are prime examples of Intersectionality of ‘isms’.” ~Susan Friedman
“Action by advocates and Resident Reps. etc. is met with us being called ‘troublemakers and complainers,’ met with retaliation and intimidation. There is no one to help us. Why not?” ~Karen Klink
“We need a public outcry and we need to demand meaningful changes NOW. We will impact quality of life for people living in nursing homes – and we need everyone to join us!” ~Alice Bonner
“The head social worker came to see me yesterday and was very irate that two ombudsmen came to see me this week due to a few things that have happened lately. I was told not to pay any attention to what they told me.” ~Sharon Wallace
“My action plan includes changing the negative words ‘Nursing Home’ to a positive ideal of ‘Care Centers’.”~Cindy Napolitan
The above quotes are drawn from the webcast, Solutions to Ageism in Nursing Homes, produced by the Gray Panthers of NYC
February 6, 2023
“The 100-year life is here. We’re not ready.”
The Stanford Center on Longevity, The long-life paradox, DealBook – New York Times, January 21, 2023
Addressing the failures of the health care system will require uncomfortable reflection and bold action. Any illusion that medicine and politics are, or should be, separate spheres has been crushed under the weight of over 1.1 million Americans killed by a pandemic that was in many ways a preventable disaster. And many physicians are now finding it difficult to quash the suspicion that our institutions, and much of our work inside them, primarily serve a moneymaking machine. . . To be able to build the systems we need, we must face an unpleasant truth: Our health care institutions as they exist today are part of the problem rather than the solution.
Doctors Aren’t Burned Out from Overwork. We’re Demoralized by Our Health System. *New York Times, February 5, 2023
The indictment alleges that the scheme operated from January 2015 to September 2018. The indictment charges the defendants with health care fraud, six counts of wire fraud, three counts of mail fraud, conspiracy to commit tax fraud, and conspiracy to commit money laundering.
New Jersey Man and Company Operating Nursing Homes and Assisted Living Facilities in Wisconsin Charged with Health Care Fraud, U. S. Department of Justice, February 2, 2023, [Editor’s note: CareOne operates 14 nursing homes in Massachusetts]
As a nation we are no longer preparing for an historic demographic shift—we are, in fact, deeply immersed in the opportunities, challenges, realities and necessities of a society with a rapidly growing number of older adults. And COVID-19’s tragedies have only brought the varied needs of this population even more to the forefront. This demographic reality must inform policy debates and decisions across a spectrum of critical issues.
Policy Priorities 2022, USAging
Direct care workers in our community can make more money flipping burgers. Those that stay are facing burnout due to being overworked.
CAREGIVER NEEDED: How the Nation’s Workforce Shortages Make It Harder to Age Well at Home, USAging, Undated
“We have no illusion that this will be beautiful or graceful, but we will be doing everything we can not to lose anyone in the process.”
Dana Hittle, Oregon’s interim Medicaid director, speaking about the so-called Medicaid unwinding, As pandemic-era Medicaid provisions lapse, millions approach a coverage cliff, Kaiser Health News, February 5, 2023
Iowa’s Health Department fined the [nursing care] center [which declared a resident dead who was discovered breathing at the funeral home] $10,000 for two violations, which included a rule that says care homes must preserve the dignity of residents.
A Patient Declared Dead Is Found in a Body Bag Gasping for Air, *New York Times, February 5, 2023
“We do think that immigrants are critical to this workforce and the future of the long-term care industry. We think the industry would probably collapse without them.”
Robert Espinoza, executive vice president of policy at PHI, As long-term care staffing crisis worsens, immigrants can bridge the gaps, WUSF Public Media, February 5, 2023
“Immigration policy is long-term care policy. If we really want to encourage a strong workforce, we need to make immigration more accessible for individuals.”
David Grabowski, professor of health care policy at Harvard Medical School, As long-term care staffing crisis worsens, immigrants can bridge the gaps, WUSF Public Media, February 5, 2023
The massive real estate substrate of industrialized medical care is draining resources from care. There is no rational justification for exceedingly low pay, and poor care when so few are making so much from the trillions of dollars poured by Americans into the health care system.
Dave Kingsley, THE ENSIGN GROUP 4TH QUARTER REPORT: MARVELOUS IF YOU ARE AN INVESTOR (BUT NOT IF YOU ARE AN EMPLOYEE AND/OR A TAXPAYER), Tallgrass Economics, February 4, 2023
Consequently, the nursing home system remains a closed system that is troubling to most Americans, but they can’t articulate the financial machinations responsible for the lack of investment by corporations in an adequately paid workforce and quality of care. Absence of openness in a complex social system funded by government inevitably leads to the bigger problem of corruption.
In 2016, the General Accounting Office Makes Recommendations Regarding Accurate and Reliable Nursing Home Financial Reports: HHS Says “Thanks, but No Thanks.”, Tall Grass Economics, February 4, 2023
January 30, 2023
“[P]redicting future revenue figures can be a difficult process in normal times. Given the volatile economy we find ourselves in, this will be an especially challenging endeavor.”
House Ways and Means Chairman Aaron Michlewitz, Analysts See Tax Revenues Holding at Elevated Levels, State House News, January 24, 2023
“I’m able to groom myself without help. I can cook. I can clean. I might not do it all fast and everything as some people can, but I can do it.”
John Simmons, who is 74 years old and stuck in a nursing home because he can’t find an affordable accessible place where he can live, ‘Warehoused’, All Things Considered – WGBH, January 26, 2023
“It’s considered a violation of the Americans with Disabilities Act to unnecessarily keep people with disabilities warehoused in institutional settings when people could safely live in a more integrated setting in the community.”
Deborah Filler, a lawyer with Greater Boston Legal Services, one of the groups representing the plaintiffs in a federal class action lawsuit, ‘Warehoused’, All Things Considered – WGBH, January 26, 2023
“Right now, the workforce challenge is really hard … so those barriers are there [for persons to leave the nursing home]. If they’re in a nursing home for too long, and they lose their housing, that’s even more difficult because we have to try to find them housing. And there’s just not a lot of accessible affordable housing in Massachusetts.”
Lisa Gurgone, CEO of Mystic Valley Elder Services, ‘Warehoused’, All Things Considered – WGBH, January 26, 2023
Homelessness pummels the body. “Fifty is the new 75” when it comes to people without a permanent place to reside.
Margot Kushel, M.D., a professor at the University of California San Francisco who has led longitudinal studies on unhoused, older adults, The Graying of America’s Homeless: An Alarming Trend, AARP, December 20, 2022 (updated)
What most patients want is to understand their present situation and to have a clear vision of the goals of care delivered in a thoughtful way—one that allows them to trust the information and maintain their dignity.
Dr. Kenneth Scott, CEO and founder of SilverSage Management Services, providing physicians and consulting to the long-term care industry, How Nursing Homes Can Increase Accountability And Improve Quality Of Care, Forbes, January 27, 2023
“Although the original vaccination campaign in nursing homes was highly successful in bringing down case and death rates, and mandates led to staff vaccination rates exceeding the thresholds we found for high effectiveness, these policies cannot remain stagnant. As the pandemic evolves, staff vaccination mandates need to evolve as well.”
Up to 50% Higher Infection Risk for Nursing Home Residents Without Boosters, Skilled Nursing News, January 27, 2023
More than 30 states allow CNAs to act as medtechs and pass out medications to residents. It’s one of the few things the state can do immediately to address the staffing shortage.
Cautionary Tale: Staffing Mandate Collides with Nursing Home Labor Crisis and Referral Bottleneck, Skilled Nursing News, January 27, 2023
“For [former State Representative] Alice [Wolf of Cambridge], seeing the dignity of another human being wasn’t a process, it was something that was always intuitive. She modeled what’s possible in terms of caring about the well-being of others and standing up and translating that into better policies.”
State Representative Marjorie Decker, Former Cambridge mayor Alice Wolf, an advocate for refugees and LGBTQ equality, dies at 89, *Boston Globe, January 29, 2023
While some brides obsess over their dress, or shoes, or earrings — Sara Hughes wanted “a really cool arm.”
A Bride’s Prosthesis Made Not to Blend In, but to Shine, *New York Times, January 27, 2023
The ratio of grandparents to children is higher than ever before. That has big consequences.
The age of the grandparent has arrived, *The Economist, January 12, 2023
“Risk starts to go up well below levels where people would think, ‘Oh, that person has an alcohol problem’. Alcohol is harmful to the health starting at very low levels.”
Dr. Tim Naimi, director of the University of Victoria’s Canadian Institute for Substance Use Research, Even a Little Alcohol Can Harm Your Health, *New York Times, January 13, 2023
Negotiating a pathway out for many of the 20,000 Bay Staters would send a powerful signal to one of the most marginalized populations—people with disabilities in nursing facilities, many of whom are from communities of color. It would also build trust with community partners who excel at coming up with creative solutions to these very challenges.
Avoid unnecessary institutionalization in nursing homes, CommonWealth Magazine, January 27, 2023
But as much as everyone loves the imaginary Hollywood spectacle of a big courtroom battle over legal rights, the best move is to negotiate and settle this lawsuit.
Avoid unnecessary institutionalization in nursing homes, CommonWealth Magazine, January 27, 2023
“The extra COVID SNAP benefits have provided critical support for individuals and families to buy food, and have also indirectly supported our local grocery stores and farmers. The Healey-Driscoll Administration is aiming to be a leader among states in providing households with an offramp to the abrupt end of these extra benefits and will continue to be a food security leader through systemic initiatives like this.”
Acting Health and Human Services Secretary Mary Beckman, Healey-Driscoll Administration Files $282 Million Supplemental Budget, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, January 30, 2023
Hospitals aren’t even the ideal places to heal, oftentimes. Infections spread among patients, occasionally with fatal results. The constant alarms and beeps made by all the monitors and machinery interrupt sleep and recovery. Older patients in particular become agitated and confused by the disruptions. Some patients have to go through rehabilitation afterward, having been confined to a hospital bed for so long. It’s no wonder that both patients and clinicians alike might want an alternative to traditional hospital care.
Your Next Hospital Bed Might Be at Home, New York Times (free access), January 27, 2023 (updated)
January 23, 2023
“People in nursing homes deserve safe, high-quality care, and we are redoubling our oversight efforts to make sure that facilities are not prescribing unnecessary medications.”
Chiquita Brooks-LaSure, administrator of the Centers for Medicare and Medicaid Services, Nursing Homes’ Use of Schizophrenia Drugs to Be Audited by U.S. Government, Wall Street Journal, January 19, 2023
“The nursing home industry has used for decades these antipsychotic medications as a way to sedate our most frail and vulnerable citizens. This is an issue that could have been remedied. Many lives would have been saved if CMS had done their job, through different administrations.”
Martha Deaver, an Arkansas-based advocate for nursing-home residents and their families, Nursing Homes’ Use of Schizophrenia Drugs to Be Audited by U.S. Government, Wall Street Journal, January 19, 2023
“President Biden issued a call to action to improve the quality of America’s nursing homes, and HHS is taking action so that seniors, people with disabilities, and others living in nursing homes receive the highest quality care. No nursing home resident should be improperly diagnosed with schizophrenia or given an inappropriate antipsychotic. The steps we are taking today will help prevent these errors and give families peace of mind.”
Health and Human Services Secretary Xavier Becerra, CMS to Publicly Post Disputed Nursing Home Citations, Tighten Antipsychotic Oversight and Penalties, Skilled Nursing News, January 18, 2023
“Antipsychotic drugs are too often used on residents with dementia because a facility is unwilling to hire sufficient staff, with the appropriate competencies, to employ non-pharmacological approaches to dementia care.”
Long Term Care Community Coalition, CMS to Publicly Post Disputed Nursing Home Citations, Tighten Antipsychotic Oversight and Penalties, Skilled Nursing News, January 18, 2023
Almost every American has been affected in some way by the COVID-19 pandemic. . . These findings make clear that nursing homes in this country were not prepared for the sweeping health emergency that COVID-19 created, nor were they able to stem the devastation once it was evident that nursing homes were especially vulnerable. Virtually all nursing homes experienced infections, and more than 1,300 nursing homes had extreme infection rates of 75 percent or higher during a surge period and an average overall mortality rate close to 20 percent.
New OIG Report on First Year of COVID-19 Pandemic Dispels Myth of Inevitability of Infection, Finds Fault with Infection Surveys, and Recommends Exploring Increased Staffing to Protect Residents from Infections, The Consumer Voice, January 19, 2023
“In some cases, these labor challenges have resulted in nursing homes permanently closing their doors.”
Data Doesn’t Lie: Current Pace Sets Nursing Home Workforce Recovery Back to 2027, Skilled Nursing News, January 19, 2023
“I understood why patients might cancel in-person visits or elective surgeries because there are so many potential points of infection associated with office or hospital-based care. I wasn’t prepared to hear about so many patients declining home-based health care services, since home-based health care is a much more controlled interaction with fewer potential points of infection.”
Jennifer Inloes, a Doctor of Nursing Practice student at the University of Michigan School of Nursing, Many older adults declined home medical care for fear of COVID, causing new or worsening conditions, Michigan News, January 18, 2023
“If you’re a younger model, in a certain way you’re not as impactful because it’s an expected situation. But for me, it makes women my age feel good about themselves and that’s very rewarding.” As a 90-year-old model her job was to communicate: “You are not the perfect person. You are simply an example of what everyone could aspire to.”
Frances Dunscombe, who began her modeling career at age 82, They’re Cover Girls. They’re in Their 70s, *Wall Street Journal, January 20, 2023 (updated)
“We prefer not to strike. We want to work, we are privileged to do what we do, but we have no leverage if it’s not on the cards.”
Anis Adnani, a second-year emergency medicine resident at the University of Illinois Chicago, where residents voted to join CIR in 2021, Medical Residents Unionize Over Pay, Working Conditions, *Wall Street Journal, January 17, 2023
“Advocating for living wages helps me be more focused on my patients, rather than worrying about if I can afford gas to get home or what I’m going to eat.”
Nicolette Alberti, a union member and second-year resident in emergency and internal medicine at UIC, Medical Residents Unionize Over Pay, Working Conditions, *Wall Street Journal, January 17, 2023
One promising means of helping patients is supported decision-making, in which an adult with cognitive impairment (called a beneficiary) identifies one or more trusted others (called supporters) to assist them in decision-making.
Supporting decision making as cognition declines, Baylor College of Medicine, January 20, 2023
The top concern to voters 65 and over, especially women, was “threats to democracy,” according to AARP.
Older Voters Know Exactly What’s at Stake, and They’ll Be Here for Quite a While, New York Times (free access), January 22, 2023
We’re not your parent’s grandparents.
Older Voters Know Exactly What’s at Stake, and They’ll Be Here for Quite a While, New York Times (free access), January 22, 2023
“The battle isn’t over,” said Jeffrey Duchin, the health officer for the public-health agency that covers Seattle and King County, who said he is concerned the U.S. isn’t pushing harder for things like improved vaccines and better indoor ventilation. “The virus is relentless; it’s not going to disappear.
U.S. Covid-19 Pandemic Enters Fourth Year with Hospitalizations on the Decline, *Wall Street Journal, January 20, 2023 (updated)
“We’ve got to really keep in perspective that we’ve seen many downstream effects of Covid and we can’t ignore them.”
Dr. Manisha Juthani, commissioner of Connecticut’s Department of Public Health, U.S. Covid-19 Pandemic Enters Fourth Year With Hospitalizations on the Decline, *Wall Street Journal, January 20, 2023 (updated)
City and state governments across the country publicly own land and houses that could be turned over to community groups.
How Housing Activists Took on Philadelphia and Won, The New Republic, March 29, 2021
“Because psychiatric units are unable to transfer patients ready for discharge into DMH continuing care beds, the psychiatric units themselves are unable to accept new patients into the inpatient psychiatric beds. This, in turn, contributes to ‘behavioral health boarding’ in hospital emergency departments and other units.”
From Massachusetts Health and Hospital Association report, Hospital Boarding Crisis Persists, Salem News, January 21, 2023
“The 100-year life is here. We’re not ready.”
Stanford Center on Longevity, The long-life paradox, New York Times – Deal Book, January 21, 2023
Age discrimination is growing more pervasive in the corporate world, and that could affect corporate productivity. “I would like to see corporations held accountable for age discrimination just as they are for every other form of discrimination. I would like companies to have to report how many people are employed at different ages so we can get a sense of, ‘Are you employing people in their 60s and 70s?’”
Lynda Gratton, a professor of management practice at London Business School and a co-author of “The Hundred-Year Life: Living and Working in an Age of Longevity,” The long-life paradox, New York Times – Deal Book, January 21, 2023
In fact, people with mental illness are much more likely to be victims of crime than perpetrators; crimes by those with a mental disorder usually have something to do with drug addiction.
Mental Illness Shouldn’t Be Kept Out of Sight, *Wall Street Journal, December 29, 2022
January 18, 2023
A minimum staffing standard will save countless lives and result in better health outcomes for nursing home residents across the country.
Why Nursing Homes Need a Minimum Staffing Standard, National Consumer Voice for Quality Long-Term Care, January 2023
“When I wake up in the morning, I never know how much energy I’m going to have because of my chronic illness.”
Fortesa Latifi, Spoon theory: What it is and how I use it to manage chronic illness. *Washington Post, January 14, 2023
“No nursing home resident should be improperly diagnosed with schizophrenia or given an inappropriate antipsychotic.”
Health and Human Services Secretary Xavier Becerra, Feds to investigate nursing home abuse of antipsychotics, AP News, January 18, 2023
Researchers across the social and medical sciences have found a strong link between mental health and green space or being outdoors. Even seeing a tree out your window can help you recover from illness faster.
The happiest, least stressful, most meaningful jobs in America, *Washington Post, January 6, 2023
To age is to live. But living well into our later years of life is not a guarantee. To do that, you need a plan.
Join the Movement: Every State Should Have a Multisector Plan for Aging, Generation – American Society on Aging, January 11, 2023
A whopping 34% of Asian Americans have experienced discrimination when seeking Alzheimer’s care.
One Size Does Not Fit All: Asian Americans and Dementia Risk, Generations – American Society on Aging, January 10, 2023
“Sometimes you have to wait two, maybe three hours to have your brief changed. You’re sitting in a wet brief for that amount of time. It’s terrible. We just feel so helpless.”
Patty Bausch, 62,resident in an Athena nursing home, Nursing home parent Athena under fire in 3 New England states, Republican American, January 15, 2023
Governments around the world are failing to adopt disability-inclusive climate adaptation and mitigation strategies, even though climate change disproportionately affects persons with disabilities.
Towards Disability-Inclusive Climate Resilience, Harvard Law School Project on Disability, January 9, 2023
Brentwood [Rehabilitation and Healthcare Center in Danvers], however, has a below-average overall rating from the federal agency on its nursing home website. The facility also scores in the bottom 4% of nursing homes in Massachusetts, according to the state’s nursing home performance tool. . . The facility has been fined four times by the federal government in the last three years for serious health or fire safety violations.
Nurse’s Aide Accused of Sex Abuse, Salem News, January 12, 2023
January 9, 2023
Anyone who has a loved one who must go to or live in a nursing home would probably agree that it is unsatisfactory to have them there. If you want change, you need to bring this to the repeated attention of your elected representatives and to ask directly for the much-needed changes.
Carolyn Rosenblatt, The Call for Nursing Home Reform: Will It Have Any Effect?, Forbes, January 5, 2023
“But I was in that nursing home and everybody was sittin’ in a chair, lookin’ out the window, starin’ into space and drooling or watchin’ TV, but nobody’s talkin’.”
Dying patient of Dr. Jim O’Connell, who has spent his medical career caring for the homeless in Boston, ‘You Have to Learn to Listen’: How a Doctor Cares for Boston’s Homeless, New York Times (free access), January 5, 2023
Owners and operators of nursing homes and their trade associations argue that they will need more money when mandatory staffing ratios promised by the Biden Administration are implemented. Don’t believe them. . . Before nursing homes are given more public money, the Center for Medicare Advocacy urges far greater transparency and accountability for the billions of dollars that nursing homes already receive.
Toby Edelman, Executive Director, Center for Medicare Advocacy, Require Full Disclosure & Accountability for Nursing Home Reimbursement, Center for Medicare Advocacy, January 5, 2023
More than one million people live in US nursing homes and
each week, one in five of them are given dangerous
antipsychotic (AP) drugs. In most cases these drugs are
administered without clinical justification.
A Decade of Drugging, Long Term Care Community Coalition
Across states, average base Medicaid payment rates for nursing facility services varied considerably, ranging from 62 to 182 percent of the national average. . . Across facilities within states, base payment rates and costs also vary considerably. Facilities that serve a high share of Medicaid-covered residents generally have lower base payment rates but also have lower facility costs, in part because they generally have lower staffing levels than other facilities. . . Measures of base payments relative to costs vary widely, ranging from less than 70 percent of costs for 15 percent of facilities to more than 100 percent of costs for 19 percent of facilities.
Estimates of Medicaid Nursing Facility Payments Relative to Costs, Medicaid and CHIP Payment and Access Commission, January 2023
The criminal justice system and the adult living complexes entrusted with protecting these victims’ health and safety appeared to be blinded to the crimes by a fatal strain of ageism. . . “The mentality of it was, ‘They were old, and they just died.’” . . . [Jeffrey Barnard, M.D., medical examiner for Dallas County] conceded that his office rarely orders autopsies for anyone over 65. Instead, thousands of “unattended deaths” (outside a hospital with no doctor present) are handled by phone — even those involving robberies or burglaries. . . “The owners and operators [of upscale older adult communities] prioritized the profits of their private equity investors over the lives of the elderly residents they undertook to protect.”. . . Do elderly lives not matter?”
Unnatural Causes: The Case of the Texas Serial Elder Murders, AARP The Magazine, November 21, 2022
“Roughly 50% of individuals going into senior living or a SNF have elevated anxiety or depression.”
Home Health Providers Believe They Can Be The ‘Quarterback’ For Behavioral Health Needs, Home Health Care News, January 4, 2023
We must do a better job of including the voices and priorities of elders generally, and those of diverse elders especially, in public health and health policy.
Understanding Pandemic Experiences Among America’s Elders, *Health Affairs, December 2022
But unlike younger and middle-aged adults, who were allowed to disregard masking and isolation if they wanted to, vulnerable old people were stripped of agency over their options, actions, and lives. As geriatrician Joanne Lynn quipped about nursing home residents, “They were incarcerated without committing a crime and without judicial review.” We must do a better job of including the voices and priorities of elders generally, and those of diverse elders especially, in public health and health policy.
Understanding Pandemic Experiences Among America’s Elders, *Health Affairs, December 2022
Public health, by definition, does not attend to individuals, but to populations and communities. Yet public health can and, given our aging population, must incorporate geriatrics and gerontology knowledge and approaches into its structures, training, and policies if going forward they hope to avoid the harms—including protracted social isolation—unnecessarily imposed on older Americans during the COVID-19 pandemic.
Understanding Pandemic Experiences Among America’s Elders, *Health Affairs, December 2022
Older adults were far more likely to experience severe COVID-19 health outcomes in prison just as they were in the community. . . Younger adults were far more likely to be released during the pandemic—a trend similar to the pre-pandemic era. . . The challenge must be to consider the differential impact that COVID-19 has had on morbidity and mortality among incarcerated older adults.
Impact Of COVID-19 On the Health of Incarcerated Older Adults in California State Prisons, *Health Affairs, August 2022
Experts agree that it costs far more to incarcerate an elderly person than a younger one, mostly because of higher medical expenses. . . Society hasn’t quite figured out the most appropriate destination for many of the older people who are released after spending much of their lives behind prison walls.
The Aging of The US Prison Population: A Public Health Crisis, *Health Affairs, August 2022
“[Older incarcerated persons] are not only aging but developing the medical and physical problems and disabilities seen in a much more aged population. These would include diabetes, high blood pressure, heart disease, and the consequences of hepatitis and liver disease.” Causes include the accumulation of life stresses before incarceration, an overwhelmed prison health system, and the rigors of living in an environment that is both spartan and dangerous.
Dr. Brie Williams, geriatrician and professor of medicine at the University of California San Francisco and director of the Center for Vulnerable Populations, The Aging Of The US Prison Population: A Public Health Crisis, *Health Affairs, August 2022
It shouldn’t take a Justice Department investigation to bring basic and humane reforms to the state’s prisons. . . [T]he U.S. Justice Department . . .has alleged DOC “failed to provide constitutionally adequate mental health care and supervision to incarcerated persons in mental health crisis and violated the constitutional rights” of those inmates “through prolonged restrictive housing on mental health watch.” . . So too, a better and more honest approach to medical parole than the one used in the year ending June 30, 2021, in which DOC granted only 17 of the 211 applications — and no applications of any of the 70 Black applicants. [The landmark 2018 Criminal Justice Act] was tailored to provide a humane option for people at the end of their lives,” said Mara Voukydis, an attorney heading up the parole advocacy unit at the Committee for Public Counsel Services. . . Promoting a just and humane system will make this a safer Commonwealth — and that needs to be on this governor’s agenda too.
Editorial Board, Healey’s chance to correct the corrections system, *Boston Globe, January 8, 2033
There is an unspoken and growing public health crisis in our country. For millions of Americans with serious health care needs, their treatment is not being provided at a hospital or clinic, but at the county jail. . . Consider this: 40 percent of state prisoners and 33 percent of individuals in federal correctional facilities have a chronic health condition. At [the Middlesex County Correctional] facility, 65 percent of individuals are being treated for a chronic disease, ranging from asthma and cancer to psychological disorders. . . We cannot allow more people, rehabilitated and ready for reentry, to lose their health care and potentially their lives because of an outdated, counterproductive policy. Let’s eliminate it now.
Peter Koutoujian, Sheriff, Middlesex County, Medicaid should cover the incarcerated, Commonwealth Magazine – The Upload, January 8, 2023
The odds of being sent to solitary increased by 125% for those with serious mental illness and by 172% for those with any mental illness.
Are People With a Mental Health Diagnosis More Likely to Do Time in Solitary?, Council on Criminal Justice, November 16, 2022
What is needed is a system of care advocates, with the appropriate oversight, who can step in from the beginning, know how to navigate the systems of care, and are willing to spend significant time and effort in the process.
James Lomastro, Dignity Alliance Massachusetts, Short of guardians, advocates could help patients navigate system, *Boston Globe, January 4, 2023
Unfortunately, in our society, if things become invisible, then they will disappear from our decision-making priorities, and that ought not to happen.
Paul Lanzikos, Coordinator, Dignity Alliance Massachusetts, BU Alum Calls for a COVID Day of Remembrance in Massachusetts, Bostonia, October 31, 2022
“Every nursing home resident deserves to live in a safe environment, with dignity and access to high-quality care. This resolution ensures that Athena facilities will appropriately provide care for individuals with substance use disorder and helps to restore the trust families need when making critical decisions about the care of their loved ones.”
Attorney General Maura Healey, AG Healey Secures $1.75 Million Resolution With Nursing Home Chain Over Failure To Meet the Needs of Residents With Substance Use Disorder, Office of the Massachusetts Attorney General, December 21, 2022
The covid pandemic was the worst public health catastrophe in 100 years but could easily happen again — and soon. A system of global genomic surveillance — an early warning radar for disease — ought to be a high priority.
Congress has not stepped up to fight covid-19 — or the next pandemic, Washington Post, January 8.2023
“I never like when I see anything make a dramatic jump like we have seen with XBB. This ascent is sharp and striking.”
Dr. Shira Doron, Tufts Medical Center, COVID Levels Skyrocket in Greater Boston, Much of Mass. Now High Risk, NBC Boston, January 6, 2023
“What we need to do is get booster numbers up across the board. There’s this vulnerable population out there that really needs protection from the rest of us.”
Sam Scarpino, director of artificial intelligence and life sciences, Northeastern University, Latest numbers show jump in COVID-19 deaths as expected winter surge arrives, *Boston Globe, January 6, 2023
[A]t least a dozen rooms at the home were in “terrible” condition and contained feces, dead rodents, dirt, and bugs.
In letter from Jeffrey S. Shapiro, the state’s inspector general, to Secretary of Health and Human Services Marylou Sudders, In scathing letter, state watchdog criticizes management of Chelsea veterans’ home, *Boston Globe, January 4, 2023
January 3, 2023
“There’s a workforce crisis across so many sectors right now in our state, but no sector is experiencing it more than human services and health care and the consequence of that, where people are relying on that care, is just absolutely devastating. As governor, I’m going to continue to stand up for the tens of thousands of homecare workers who are providing vital care, compassionate care, to ensure that people are able to live independently, safely and with dignity. We deprive ourselves as a commonwealth when we fail to recognize the dignity, the worth and the capacity of each person in this state.
Governor-elect Maura Healey, Healey vows to address shortage of personal care attendants, Hampshire Gazette, December 27, 2022
“I thought I was sensitive and compassionate before Jeff was injured, but I found that there’s just a whole other level of what he was experiencing that affected me profoundly.” As a parent and caregiver, “you suddenly belong to this community that you never knew you were going to be part of, and none of us probably wanted to be there.”
Judy Woodruff, Judy Woodruff on how her son with disabilities changed her view of health care, Washington Post (free access), December 29, 2022
Covering disabilities is complicated by the fact that they occur for so many reasons: genetic conditions, illness, accidents, war injuries. “Because there are so many different organizations and people advocating, it’s been hard to come together and make one case. It pits one good cause against another good cause.”
Judy Woodruff, Judy Woodruff on how her son with disabilities changed her view of health care, Washington Post (free access), December 29, 2022
Our health care system cannot function without family caregivers.
National Strategy Will Meet Caregivers’ Needs, Next Avenue, November 21, 2022
Too often, “old people” [in the United States] are regarded as useless, helpless or a nuisance, left to wind down the clock as they stare out the window, a lifetime of experiences, work, achievement, and sacrifice forgotten.
Gary Abernathy, Ageism is one form of bigotry that never seems to get old, Washington Post (free access), December 28, 2022
The government is leaving billions of dollars on the table.
The Great Big Medicare Rip-Off, The Atlantic, December 26, 2022
There are over one billion disabled people around the globe (and counting, due to Long Covid). And it’s been over thirty-two years since the signing of the Americans with Disabilities Act (ADA). So, why don’t small businesses have holiday (and year-round) marketing plans that include disabled people as a viable consumer group and valuable part of the community? The message here is that there is no welcome mat for disabled people.
Shopping Locally for the Holidays Should Be Accessible to All, The Century Foundation, Voices of Disability Economic Justice Project, December 19, 2022
“[Ending homelessness is] a complicated issue. My only observation is until the bigger resolution happens . . . it seems like well-run attempts to address this issue neighborhood by neighborhood is a reasonable step forward.”
Will Cohen, chair of the Jamaica Plain Neighborhood Council, ‘Permanent supportive housing’ may be controversial to would-be neighbors, but it’s been beneficial to those who live in it, *Boston Globe, December 20, 2022 (updated)
“We are concerned that when applied to hospice care, the private equity model of generating profit on a rapid turnaround can occur at the expense of dying patients and their families.”
Senate Finance Committee Report, Congress and Industry Leaders Call for Crackdown on Hospice Fraud, ProPublica, December 19, 2022
“I feel like standing still isn’t an option.
Mary McGeown, executive director of the Massachusetts Society for the Prevention of Cruelty to Children commenting on Massachusetts new “front door” initiative regarding behavioral health services, The state’s ‘front door’ to behavioral health care set to open as demand for services soars, *Boston Globe, January 1, 2023