Week ending October 12, 2021
[The United Nations Human Rights Council] recognizes that the challenges relating to the enjoyment of civil, political, economic, social, and cultural rights by older persons, including, among others, in the areas of prevention of and protection against violence, abuse and neglect, social protection, food and housing, the right to work and access to the labour market, equality and non-discrimination, access to justice, new technologies, education, training, health support, long-term and palliative care, lifelong learning, participation, accessibility and unpaid care work, and the need to address them require in-depth analysis and adequate action.
Promotion and Protection of All Human Rights, Civil, Political, Economic, Social and Cultural Rights, Including the Right to Development, United Nations Human Rights Council, October 5, 2021
Human beings have always coexisted with threats to our health: violence, vehicular crashes, communicable diseases. And many of us have meandered through our perilous existence without thinking much about it. Sure, people may drive more cautiously at nighttime, use condoms with a new partner, and avoid walking through dark alleys alone. But before the pandemic, we didn’t lock down our lives to eliminate all risk. Schools didn’t close during flu season. Doctors didn’t preach abstinence for all in the face of herpes and HIV. We had accepted the inherent riskiness of being human, and we took reasonable precautions where possible. . .
But for many of us, the pandemic blew apart our complacency—at least when it came to the risk of contracting COVID. People rejiggered their lives with a singular goal in mind: Don’t get infected with the novel coronavirus. . .
So, what do we have to accept? We have to accept that there is no inoculum for uncertainty—that no human contact is risk-free, that no vaccine is perfect, that we can never guarantee safety in life. The harder question is determining what is in our power to change. I remind patients that once they’ve been vaccinated, they’ve already taken the most important—albeit imperfect—step toward protecting themselves and others from COVID. . .
Acceptance is not about agreeing with or surrendering to suffering. It is not about reckless abandonment of caution or carelessness toward others. It means letting go of the false promise of “COVID zero,” taking an honest assessment of our personal risk tolerance, and ceding control where control isn’t possible. It’s about getting vaccinated against COVID and the flu before attending a wedding in person—instead of watching the nuptials on Zoom. Acceptance doesn’t prescribe the same set of behaviors for all. My immunosuppressed octogenarian patient. . .
Doctoring isn’t about walling off patients from certain exposures. It is about acknowledging our messy world and arming patients with tools to safely inhabit it. Right now, it’s about helping patients redefine health as more than simply not getting COVID. Health also means accepting that living is about more than simply not dying.
Lucy McBride, a practicing internist in Washington, D. C., and author of a COVID-19 newsletter, A COVID Serenity Prayer, The Atlantic, October 10, 2021
“I wish all elderly people had someone like Renee to care for them. We have a happy life, in spite of all the things that happen.”
Nancy Canu, 92 years-old, commenting on the care relationship with her 37-year-old granddaughter, Renee Taylor, Tallying the Cost of Growing Older, New York Times (free access), October 5, 2
“She would call out for help and no one would come. There was no one around.”
Tamika Dalton, daughter of a 74-yearold woman with multiple sclerosis who was a resident in a North Carolina nursing home, Ghost towns: Nursing home staffing falls amid pandemic, Fitchburg Sentinel & Enterprise, October 8, 2021
“The United States is in the midst of a caregiving crisis and we have a once-in-a-generation opportunity to solve it. We owe it to every American who needs these services now, as well as all who will need care in the future, to fully fund this policy.”
U. S. Senator Bob Casey (D-PA), Uncertainty Surrounds Biden Plan to Boost Disability Services, Disability Scoop, October 8, 2021
“We are still pushing for the full $400 (billion) but know it will be cut. I am very worried about it being cut out entirely. With almost 1 million on waiting lists nationwide, we need to keep up the pressure on senators about the importance of building the infrastructure for home and community-based services.”
Kim Musheno, vice president of public policy at the Autism Society of America, Uncertainty Surrounds Biden Plan to Boost Disability Services, Disability Scoop, October 8, 2021
“Before her, people talked about suicide like it was this mystical, horrifying behavior. Her work destigmatized depression, and because of that, so many people owe their lives to her.”
Dr. Jill Harkavy-Friedman, vice president for research, American Foundation for Suicide Prevention, speaking about Dr. Paula Clayton, Paula J. Clayton Dies at 86; Helped Destigmatize Depression and Suicide, *New York Times, October 8, 2021
“Studies across the medical and social sciences routinely show that those who lose parents are at elevated risks of depression and related mental health challenges, have higher risks of criminal justice system involvement and higher rates of substance use, are more likely to drop out of schooling and less likely to attend college. Further down the line, we know all of those factors above place the individuals at greater risk of lower earnings, more unemployment, poor physical health, and relationship strains. To some extent, though the literature is more tenuous here, there is likely greater risk of early death.”
Dr. Ashton Verdery, professor of Sociology, Demography, and Social Data Analytics, Penn State, Nearly 120,000 children in US have lost a primary caregiver to COVID-19: Internal CDC data, ABC News, July 20, 2021
“Something is very broken in our system and our cultures and hearts. We must come together to fix it. We should not be willing to tolerate that for another day.”
Dr. Susan Hillis, researcher and epidemiologist at the Centers for Disease Control and Prevention, commenting on the report of 120,000 children who have lost caregivers during the pandemic, Over 120,000 American Children Have Lost a Parent or Caregiver to Covid-19, Study Says, *New York Times, October 7, 2021
“I just received word from a New York City-area agency that today, to comply, had to remove 175 home health aides from service [a]nd this is from an agency with a 94 percent vaccination rate among aides. One hundred seventy-five aides in one agency, on top of the emergency shortage that already exists, is just huge.”
Al Cardillo, president of the Home Care Association of New York State, About 86 percent of home health aides in New York have met a deadline to be vaccinated., *New York Times, October 9, 2021
“When wheels are involved, the impact is different. It’s why, in many cases our athletes can tolerate higher training volumes [or mileage] than a runner.”
Adam Bleakney, coach to elite wheelchair marathoners Tatyana McFadden and Daniel Romanchuk, 5 major marathons. In 42 days. 2 back-to-back. How top wheelchair racers are doing it, NPR, October 10, 2021
“Most of us don’t think we’re going to see the terrible surge we saw last winter. That was horrific. I hope we never have to live through something like that again.”
Dr. Yvonne Maldonado, infectious disease epidemiologist, Stanford University, As winter looms, experts say more vaccinations are needed to keep virus at bay. *New York Times, October 10, 2021 (updated)
Sometimes she told doctors what to do and was right.
The tall nurse and the little girl, *Boston Globe, October 9, 2021
There were profound racial/ethnic disparities in excess deaths in the United States in 2020 during the COVID-19 pandemic, resulting in rapid increases in racial/ethnic disparities in all-cause mortality between 2019 and 2020.
Racial and Ethnic Disparities in Excess Deaths During the COVID-19 Pandemic, March to December 2020, Annals of Internal Medicine, October 5, 2021
“I know that if I had been in the room voting, I would have voted to offer boosters to that group, and that’s ultimately where I laid.”
Dr. Rochelle Walensky, CDC Director, STAT News, October 7, 2021
“We need to start thinking outside the box at more innovative ways to provide care. Care in the home is vital. COVID brought that to the forefront.”
Carol Hudspeth, executive director, Missouri Alliance for Home Care, For Kids With Complex Needs, In-Home Care Tough to Find, DisabilityScoop, October 6, 2021
“Home care is a different situation for workers and patients. If a hospital has 95 percent of its staff, you can move people around and survive. But if a home care patient’s home health aide doesn’t show up, it’s a 100 percent shortage for that patient.”
New York Assemblyman Richard Gottfried, who chairs the legislative health committee, How a Vaccine Mandate Could Worsen a Shortage of Home Care Aides, *New York Times, October 7, 2021
“I don’t want to be a hero. I want to be a mom and a nurse. I want to be considered a person who chose a career that they love, and they deserve to go to work and do it in peace. And not feel like they’re going to get harmed.”
Mawata Kamara, a nurse at San Leandro (CA) Hospital, ‘Are You Going to Keep Me Safe?’ Hospital Workers Sound Alarm on Rising Violence, Kaiser Health News, October 11, 2021
“To pull this man out of the car, by his hair — a paraplegic — is totally unacceptable, inhumane, and sets a bad light on our . . . city.
Dayton, OH NAACP President Derrick L. Foward, NAACP says it will investigate after police pulled a paraplegic man from his car, *Washington Post, October 9, 2021
While recent news coverage has focused heavily on the impact of the pandemic on children and unvaccinated adults, the pandemic continues to disproportionately impact older adults and people with disabilities.
Nursing Homes Experienced Steeper Increase In COVID-19 Cases and Deaths in August 2021 Than the Rest of the Country, Kaiser Family Foundation, October 1, 2021
A nation cannot fully thrive until everyone—no matter who they are, where they live, or how much money they make—can live their healthiest possible life, and helping people live their healthiest life is and has always been the essential role of nurses. Nurses have a critical role to play in achieving the
goal of health equity.
The Future of Nursing 2020–2030: Charting a Path to Achieve Health Equity, National Academy of Medicine and The National Academies of Sciences Engineering Medicine, May 2021
“Our progress on value-based care has stalled in the last three to four years . . . It’s troubling because this is a real tool to move the system. . . We’re stuck and we don’t really have the tools to unstick it.”
David Speltz, executive director, Massachusetts Health Policy Commission, Whither Massachusetts Health Reform?, Health Affairs Blog, October 4, 2021
Our nation’s health care systems have the opportunity to help people put food on the table and address other social needs, especially as we continue to grapple with a global pandemic.
Food For Life: Health Care’s Role in Improving Health Through Food Assistance Benefits, Health Affairs Blog, October 4, 2021
“We really make all kinds of selective value judgments. When we’re selecting in the committee room, I hear the most subjective, value-based judgments about people’s lives. This is just another thing.”
Dr. David Weill, former director of Stanford University Medical Center’s lung and heart-lung transplant program, commenting Covid shot requirements for transplant recipients, Organ Centers to Transplant Patients: Get a Covid Shot or Move Down on Waitlist, Kaiser Health News, October 8, 2021
Week ending October 5, 2021
“Frequently, I talk to older people who are telling me about the problems they’re facing from aging, and it’s things that disabled people have been working on our whole lives. Maybe one of the outcomes of Covid will be that we’ll make the reforms necessary to allow people to remain in their homes and communities and not end up in these segregated places where over and over again we see atrocities.”
Judy Heumann, a pioneer in the modern disability rights movement and co-founder the World Institute on Disability, What if Disability Rights Were for Everyone?, New York Times (free access), October 1, 2021
“People with disabilities found that accommodations they were denied for decades suddenly became universally available during the pandemic. [The pandemic] also presents an opportunity to imagine what a world in which accommodations were available to all might look like.”
Colin Killick, Executive Director, Massachusetts Disability Policy Consortium and member of Dignity Alliance Massachusetts, What if Disability Rights Were for Everyone?, New York Times (free access), October 1, 2021
“We have the most highly sophisticated medicine and advanced training in the world, and we’re having to ration care. We didn’t sign up for this.”
Javid Kamali, intensive-care doctor at Providence Alaska Medical Center in Anchorage, Overwhelmed by Covid-19 Patients, Alaska’s Doctors Make Life-and-Death Decisions, *Wall Street Journal, October 3, 2021
“This is gut-wrenching, and I never thought I’d see it. We are taxed to a point of making decisions of who will and who will not live.”
Dr. Steven Floerchinger, Alaskan physician in practice for 30 years, In Alaska’s Covid Crisis, Doctors Must Decide Who Lives and Who Dies, *New York Times, October 23, 2021
“If you would have just helped, he would have been home right now.”
Tracy Johnson, mother of Esias Johnson, a 23 year-old, mentally ill man who died at Rikers Island jail, ‘I Just Want to Be Normal’: A Mentally Ill Man’s Death at Rikers, New York Times (free access), September 27, 2021
“The right way to think about [Merck’s antiviral pill] is this is a potential additional tool in our toolbox to protect people from the worst outcomes of Covid.”
Jeff Zients, a White House coronavirus adviser, Merck says it has the first antiviral pill found to be effective against Covid *New York Times, September 30, 2021
“If [Merck’s] antiviral pill pans out, it will change the landscape.”
Andy Pavia, chief of the Division of Pediatric Infectious Diseases at University of Utah, Merck’s antiviral pill reduces hospitalization of Covid patients, a possible game-changer for treatment, STAT News, October 1, 2021
Lawmakers and the governor owe it to the veterans of Massachusetts — and especially to those who died of COVID-19 at the Soldiers’ Home in Holyoke — to get it right.
Editorial Board, People in government failed the Holyoke Soldiers’ Home. Now they have to fix it., *Boston Globe, October 4, 2021
“Nursing homes have always had to have an infection control plan. The virus showed flaws all over the country, not just in nursing homes, in taking care of older adults.”
Janine Finck-Boyle, vice president of regulatory affairs, LeadingAge, Why Addressing Infection Control in Nursing Homes Is More Important Than Ever, Next Avenue, September 27, 2021
“No. It’s not a sad story. It’s emotional. It’s hard to watch somebody change. I think what’s been beautiful about this, and what’s been challenging, is to see how it affects him in some ways, but to see how it doesn’t affect his talent. I think he really pushed through something to give the world the gift of knowing that things can change and you can still be magnificent.”
Lady Gaga, Tony Bennett and Lady Gaga prepare for Bennett’s last big concert, 60 Minutes (CBS), October 3, 2021
If the main lessons we take from the eviction moratorium have to do with how to configure a better moratorium for the next national emergency, we will have failed. We should be dedicating ourselves to building a better housing system, one that ensures we don’t face an eviction crisis come next pandemic — or next year.“
The Moratorium Saved Us. It Really Did.’, *New York Times, October 3, 2021
“We are all here because of a tragedy that occurred because too many people were asleep at the wheel.”
Holyoke Soldiers’ Home Coalition, Families in veterans’ home COVID-19 outbreak demand changes, Salem News, September 30, 2021
“Despite the fact that Medicaid exists to provide care and services to those who cannot afford it, in these instances the benefit is essentially in the form of a loan that must be repaid upon death. At least when people take out a loan they know they’re taking out a loan. But far too many grieving families — and I know you’ve received their testimony — are caught by surprise when an exorbitant bill arrives in the mail unexpectedly and they’re grieving for a loved one.”
Senator Jo Comerford (D-Northampton), Some families blindsided by MassHealth estate recovery, State House News Services, September 29, 2021
Without judgment, overdose prevention sites can be used to build connections, relationships, and trust, which are essential for providing the medical and social services certain vulnerable individuals need. Instead of leaving them to struggle alone, we can start creating more safe spaces to ask: How can I help?
William F. Haning, an addiction specialist physician, Overdose prevention sites can save lives and promote recovery. We must be willing to try them, STAT News, September 29, 2021
Nearly as disturbing to Dr. [Ruth] Sullivan was a prevailing psychological theory that cold and distant parents — most notably those who were referred to as “refrigerator mothers” — were responsible for causing their children’s autism.
Ruth Sullivan, Advocate for People with Autism, Dies at 97, *New York Times, September 30, 2021
Week ending September 14, 2021
“People don’t just wake up with schizophrenia when they are elderly. It’s used to skirt the rules.”
Source: Dr. Michael Wasserman, a geriatrician and former nursing home executive who has become a critic of the industry, Phony Diagnoses Hide High Rates of Drugging at Nursing Homes, New York Times (free access to article), September 12, 2021
“I tried to get him out — I tried and tried and tried, but when I did get him out, it was too late.”
Source: Yvonne Blakeney, whose husband, David, was medicated in the nursing home with Haldol, Ambien, trazodone and Zyprexa, had a leg amputated due to untreated bedsores, and died of pneumonia in a hospital, Phony Diagnoses Hide High Rates of Drugging at Nursing Homes, New York Times (free access to article), September 12, 2021
“I think the mistake is in thinking that we know how we’re going to react to everything, you know? If I were to ask you, you know, at the end of your life, would you like to suffer for 2 1/2 years or would you prefer to go out peacefully on your own terms in hospice? I can’t imagine anyone saying, well, I would take the suffering. But when you’re in that moment – and I’ve thought about this so many times. She wasn’t necessarily thinking rationally. She was thinking about – well, tomorrow – you know, we can deal with the trach tomorrow. We’re going to deal with it tomorrow. You know, I’ll have tomorrow. I’ll have the next day – like, not right now.”
Source: Jason Rinka, son of Stephanie Rinka, who died of amyotrophic lateral sclerosis (ALS), The Ventilator, Hidden Brain (Podcast and transcript), September 7, 2021, [Note: The podcast version is recommended.]
“As the tools of science and medicine have made it possible for us to extend life, many of us believe we can make rational choices about when to use these tools and for how long. We imagine that we will use medical interventions only to limit the awfulness of death when, in fact, these interventions may end up prolonging it. We believe that, with forethought and planning, we can force suffering to yield to rationality and logic. Many of us succeed, but many families discover that reason is puny in the face of death. Despite our best intentions, despite all that we know and understand, fear and confusion and love conspire to make neat choices messy and easy decisions difficult. We come to realize there isn’t just one person inside each of us. There are many, and these different versions of ourselves have very different desires.”
Source: Shankar Vedantam, host of Hidden Brain, The Ventilator, Hidden Brain (Podcast and transcript), September 7, 2021, [Note: The podcast version is recommended.]
“The settlement with Karen Garner will help bring some closure to an unfortunate event in our community but does not upend the work we have left to do.”
Source: Loveland, CO City Manager Steve Adams commenting following settlement with 73-year-old woman with dementia roughly treated during unwarranted arrest, A $3 Million Deal Is Reached in The Rough Arrest of A 73-Year-Old Woman with Dementia, NPR, September 8, 2021,
[Karen} Garner, [a 73-year-old Colorado woman,] has dementia and suffers from sensory aphasia, which impairs her ability to understand. Her violent arrest has other older people in the area worried about potential encounters with police.
Source: The Violent Arrest of a Woman with Dementia Highlights the Lack of Police Training, NPR, June 15, 2021
“On the whole, we’re doing terrible. We have to do much, much better at being able to recognize these types of issues [e.g., responding to people with mental illness and developmental disabilities] and being more sensitive to them.”
Source: Jim Burch, president, National Police Foundation, a nonprofit organization focused on police research and training, The Violent Arrest of a Woman with Dementia Highlights the Lack of Police Training, NPR, June 15, 2021
“Just training in and of itself is not going to create that long-term change that we are hoping for. . . [O}ur goal is to help communities understand that [responding to people with mental illness and developmental disabilities] is a communitywide issue, that there’s not one specific spoke within the criminal justice system or in our communities that can address it adequately alone.”
Source: Lee Ann Davis, director of criminal justice initiatives at The ARC, a national disability advocacy organization, The Violent Arrest of a Woman with Dementia Highlights the Lack of Police Training, NPR, June 15, 2021
The post-pandemic transition back to the workplace may be rocky. Three out of four respondents are worried about managing their responsibilities once they return. The perks put in place by employers as a result of COVID-19 are so valued that 43% of respondents said they would consider looking for a new job if any of the new benefits were taken away.
Source: Working Caregivers’ Worries Over Workplace Return, AARP Research, August 2021
An estimated one in five older adults currently experience depression, anxiety, insomnia, substance use, or another mental health disorder. . . The COVID-19 pandemic has created unprecedented challenges for older adults that can negatively affect mental health.
Source: Mental Health Among Older Adults Before and During the COVID-19 Pandemic, National Poll on Healthy Aging (University of Michigan), May 4, 2021
The cost of a single hip replacement resulting from a vision-impaired fall would exceed the cost of many hundreds of eye exams and needed vision corrections.
Source: Argument in support of proposal to extend Medicare benefits to cover vision care, How Vision Loss Can Affect the Brain, *New York Times, September 6, 2021
44 percent of all COVID-19 cases and 40 percent of COVID-19 deaths in nursing homes counted by state health departments went unreported in the federal data.
Source: Research: Federal tally missing 16K nursing home COVID-19 deaths, The Hill, September 9, 2021
“This is the closest we’ve come since the inception of [Medicare] for adding these benefits. There’s a sense that if we don’t take advantage of this opportunity, another won’t come along for a long time.”
Source: David Lipschutz, Associate director and senior policy attorney for the Center for Medicare Advocacy, Medicare’s trust fund faces insolvency in 2026. Here’s how that squares with Democrats’ efforts to expand the health insurance program, CNBC News, September 12, 2021
“We have an obligation to use this historic investment to address longstanding inequities of power and opportunity that have left Black families with an average net worth one-10th the size of their white counterparts.”
Source: Senator Mark Warner (D-Va.), Warner warns he may vote against $3.5 trillion budget, Axios, September 12, 2021
“Consistent with the fact that states in the Northeast were hit hardest in the early months of the pandemic but generally experienced lower case and death rates in later months, we found that unreported cases and deaths represented a significantly larger share of year-end totals in the Northeast than in the South and West, where most cases and deaths occurred later.”
Source: Many early nursing home COVID cases, deaths likely unreported, Center for Infectious Disease Research and Policy, University of Minnesota, September 10, 2021
The second, more humbling conclusion from these findings is that the true toll of COVID-19 on nursing home residents may never be known. Given the delay in federal data collection, the most accurate data sources for nursing home cases and deaths during the initial US wave of the pandemic are state health departments. Yet only approximately half of US states collected and publicly released nursing home COVID-19 data during Spring 2020, and these states varied widely in the amount and quality of information reported.
Source: Elizabeth White, PhD, APRN, Brown University School of Public Health, Underreporting of Early Nursing Home COVID-19 Cases and Deaths in Federal Data, JAMA Network Open, September 9, 2021
“America has a death problem. No, I’m not just talking about the past year and a half, during which COVID-19 deaths per capita in the United States outpaced those in similarly rich countries, such as Canada, Japan, and France. And I’m not just talking about the past decade, during which drug overdoses skyrocketed in the U.S., creating a social epidemic of what are often called “deaths of despair.”
Source: Derek Thompson, staff writer, Why Americans Die So Much, The Atlantic, September 12, 2021
Week ending September 7, 2021
Society tells me I look too healthy to be disabled. My medical records tell me I’m too disabled to be healthy. When the world tries to mute what my body is so clearly screaming at me, I’m left feeling stuck in a painful game of tug-of-war. . . [T]here is no doubt in my mind that I am disabled. It’s not a dirty word, and I’m not ashamed of it.
. . . Disability can mean so many things, but being disabled does not mean you’re unable to do everything a healthy person can do.
Jennifer Wirtz, a 26 year old woman with multiple debilitating chronic conditions, When People Say ‘You Look Too Healthy to Be Disabled’, The Mighty, September 24, 2019, Link: you-look-too-healthy-to-be-disabled
“Unfortunately, it appears that the standard of care and quality controls at many state veterans’ homes falls well short of those required by other government supported
nursing homes. Americans deserve answers and our veterans deserve better.”
Senator Charles Grassley, Senator demands VA answers on oversight of state-run vets’ homes, McKnight’s Long-Term Care News, September 2, 2021, Link: Grassley-demands-VA-answers-on-oversight
“The lack of regard for these vulnerable residents’ wellbeing is an affront to human dignity. We have lost trust in these nursing homes to provide adequate care for their residents. We are taking immediate action today to protect public health.”
Dr. Joseph Kanter, Louisiana’s health officer, Seven Louisiana nursing homes ordered closed for evacuating patients to warehouse before Hurricane Ida, NBC News, September 4, 2021, https://tinyurl.com/LouisanaNursingHomesClosed
“What happened in Independence [Louisiana nursing homes] is reprehensible and I know there are many families hurting as a result.”
Louisiana Health Secretary Courtney N. Phillips, Families scramble to find elderly nursing home patients taken to warehouse ahead of Ida, *Washington Post, September 5, 2021, https://tinyurl.com/FamiliesScrambleLANHl
The high concentration of fatalities coupled with isolation among residents has led some to call for reimaging elder-care homes3, while others have argued for abolishing these facilities and instead investing in community-based alternatives4. These two opposing viewpoints represent a false dichotomy in the care of older adults. Improving long-term care in a post-pandemic world will require increased investment in community-based care while also changing the nature and scale of elder-care homes. . . Following the pandemic, countries like the USA should increase their overall government spending on long-term care, and the bulk of that additional spending should go to HCBS. . . It is not that countries like the USA need to spend less on nursing homes, they need to spend their nursing home dollars differently. . . As the late Robert Kane used to say, the term ‘nursing home’ is often a misnomer. Many US nursing homes have little in the way of nursing and do not really feel much like a home. . . New evidence is also emerging that larger nursing homes were less effective at protecting residents from COVID-19 during the pandemic10. The time is ripe to reimagine what a nursing home could be in a post-pandemic world. . . If there is a silver lining to COVID-19 and long-term care, the pandemic will hopefully accelerate the decades-long push towards expanding HCBS while also causing a reconceptualization of nursing home care15. These are not competing goals but rather complementary ones. The goal should not be to abolish nursing homes, but rather abolish the institutional models and the underfunding of HCBS that have plagued long-term care for far too long.
David Grabowski, Professor, Health Policy, Harvard Medical School, Nature Aging, January 14, 2021, The future of long-term care requires investment in both facility- and home-based services, https://tinyurl.com/FutureLongTermCare
Watchdogs both in and out of the VA have questioned the adequacy of the inspections for decades. Just months before the pandemic bore down, the GAO in 2019 warned that the VA inspections lack teeth, merely making recommendations about some deficiencies instead of meticulously documenting them and requiring that they be addressed.
When Covid-19 came the following winter, elderly and disabled veterans were among the hardest hit. Soldiers who’d survived battles couldn’t survive the pandemic. . .State homes serve a little more than twice as many people as the federally run community centers, but their pandemic-related deaths were almost five times higher
Sadness and death: Inside the VA’s state nursing-home disaster, Politico, August 24, 2021, Link: veterans-nursing-home-coronavirus
“I hope people’s perceptions of disabled people change [from] watching the Paralympics, from people that can’t do anything by themselves that need help, to these people that are doing extraordinary things in all sorts of creative ways.”
Tomoko Hashizume, head of the nonprofit Japan Service Dog Resource Center, In Japan, disability advocates hope the Paralympics will showcase the pawsomeness of service dogs, *Washington Post, September 4, 2021, Link: Paralympics-Japan-service-dogs
“I had to put two people in a body bag and send them to the refrigerator truck.”
Kwesi Ablordeppey, a certified nursing assistant at the Holyoke Soldiers’ Home, Class action suit filed against former Soldiers’ Home management, Western Mass News, August 16, 2021, Link: class-action-suit-filed-against-former-soldiers-home-management
As we continue to navigate the pandemic and aim to rebuild our country and economy when it abates, we are faced with some hard truths: a rapidly aging society, rising health care costs, and a growing shortage of caregivers, paid and unpaid. As a result, Americans increasingly will rely on a smaller pool of family and friends, many of whom are working full- or part-time jobs, to care for them as they age.
National paid leave could change the American caregiving experience, The Hill, September 3, 2021, Link: national-paid-leave-could-change-the-american-caregiving-experience
Mak[ing] music more accessible to deaf audiences doesn’t come without challenges, including a common misunderstanding that deaf people can’t enjoy music. They can, largely through vibrations and interpretations.
‘WAP,’ a Matter of Interpretation in ASL, The Lowell Sun, August 18, 2021, Link: WAP-a-matter-of-interpretation-in-ASL
How many people have died because of the covid-19 pandemic? The answer depends both on the data available, and on how you define “because”.
The pandemic’s true death toll, *The Economist, September 4, 2021 Link: coronavirus-excess-deaths-estimates
“I must say from my own experience as an immunologist, I would not at all be surprised that the adequate full regimen for vaccination will likely be three doses.”
Dr. Anthony Fauci during a White House Covid briefing, Fauci says he wouldn’t be surprised if Covid vaccines require three shots for full regimen, instead of two, CNBC News, September 3, 2021 (updated), Link: covid-vaccine-Fauci-says-he-would-not-be-surprised
The painful truth is that her status is ethically equivalent to that of a widow.
My Stepdad Has Alzheimer’s. Can My Mom Date Someone Else?, *New York Times, August 31, 2021, Link: Alzheimer’s-ethics
“Now those agencies [Federal Drug Administration and the Center for Disease Control and Prevention] are in a box. We want doctors and scientists and the public to trust in the recommendations and decisions that are made, to be able to point to the F.D.A. and C.D.C. doing their due diligence.”
Dr. Steven Joffe, professor of medical ethics and health policy at the University of Pennsylvania, questioning whether public statements about the necessity of a third round on vaccine shots was premature, Health Officials Advise White House to Scale Back Booster Plan for Now, *New York Times, September 3, 2021, Link: coronavirus-booster-shots
A nursing home, assisted living, or other long-term care facility should have a comprehensive emergency plan in place just like a family should. . . The facility is required to “tailor its disaster plan to its geographic location and the types of residents it serves.”
Emergency Preparedness: Questions Consumers Should Ask, National Consumer Voice for Long Term Care, Link: emergency-preparedness-factsheet
Great cities do not happen by accident. They take careful planning, public input, and meaningful action.
Salem, MA Mayor Kim Driscoll, commenting on the fifth anniversary of the initiation of Salem’s Age-Friendly Action Plan, Five years of Salem for All Ages, Salem News, September 3, 2021, Link: Salem for All Ages
The study found that driving behavior and age could predict preclinical Alzheimer’s 88 percent of the time. . . [A] study analyzing medical records and consumer credit reports for more than 80,000 Medicare beneficiaries showed that seniors who eventually received a diagnosis of Alzheimer’s disease were significantly more likely to have delinquent credit card payments. . . Using audio files recorded during interviews, they compared healthy patients’ vocal features — pitch, intensity, silent intervals — with those with Alzheimer’s and found that the models could predict cognitive status. . . IBM researchers have picked up elevated risk in writing tests, finding that word patterns and usage predicted later Alzheimer’s diagnoses.
Seeking Early Signals of Dementia in Driving and Credit Scores, *New York Times, August 23, 2021, Link: dementia-behavior-Alzheimer’s-credit-scores
Older adults are more likely to experience life events and transitions that decrease the size of their networks, including family dispersal, health issues, cognitive decline, role losses or changes, mobility limitations and living alone, all of which are risk factors for social isolation and loneliness.
Social Engagement for Older Adults, People with Disabilities and Caregivers During COVID-19: Results from a New Poll of Aging Network and Partner Organizations, engAGED: The National Resource Center for Engaging Older Adults, https://tinyurl.com/SocialEngagementOlderAdults
Not long ago, paying a visit to grandparents in state-supported housing for older adults seemed to satisfy everyone’s emotional needs in the Netherlands and allowed young couples to focus on raising their children and working at their jobs. Now, with changes in the country’s liberal welfare state and expectations that seniors will remain at home longer, it can be quite a challenge to support aged family members, who might even live on the other side of the country. This and other socioeconomic developments have contributed to a rising interest in communal living, which can be observed not only in the Netherlands but also around the world.
Where Home Blends with Community, *New York Times, September 2, 2021,https://tinyurl.com/HomeBlendsWithCommunity
Most important, we need to stop thinking of growth as a zero-sum game. Today, insiders worry about getting their share of the pie instead of growing the economy for everyone. The best recipe for economic growth is the traditional American one: freedom, combined with robust investment in opportunity for the least advantaged.
The American Housing Market Is Stifling Mobility, *Wall Street Journal, September 2, 2021, https://tinyurl.com/AmericanHousingMarket
“I am deeply concerned to have seen the conditions of these private apartment facilities where some of our most elderly and vulnerable community members reside. [This] was a failure of these facility operators to adequately prepare and protect their residents.”
David Morris, Resilient Nola, a municipal agency, New Orleans Power Failure Traps Older Residents in Homes, *New York Times, September 5, 2021, https://tinyurl.com/NewOrleansPowerFailure
Aducanumab is likely to remain controversial, and similar drugs will undoubtedly emerge soon. It is essential to target these drugs to individuals who are most likely to benefit. Only by doing so can we maximize the clinical benefit, minimize harms, and use health care dollars wisely. As we urgently develop new tests and implement effective, efficient, and equitable screening for MCI and dementia due to Alzheimer’s disease, we must also address the clinical, economic, ethical, and policy questions that screening tests raise.
Yet Another Controversy Over the Latest Alzheimer’s Drug: How Will Patient Eligibility Be Determined?, Health Affairs Blog, September 1, 2021, https://tinyurl.com/AnotherControversy
“Those of us who aren’t of advanced age yet, we often think we’re doing a favor by being around older people and listening to their stories. I don’t see it that way at all. It’s not charity to be around older adults. I am a better person, a better minister, our church is a better place because of our older members, not despite them. It reflects poorly that our imagination is so stunted and limited when it comes to aging — that we can’t see all the gifts that are lost, all the creativity and the care and the relationships that are lost when we don’t interact with older adults. That’s a real spiritual deficit in our society.”
Rev. Lynn Casteel Harper, 41,Riverside Church, New York City, Minister for Seniors at Famed Church Confronts Ageism and the Shame It Brings, Kaiser Health News, September 2, 2021, https://tinyurl.com/ConfrontsAgeism
“They’re showing that anybody can do these things, that you don’t have to be afraid of aging. The 20 and 30 somethings don’t often think about that. The authenticity that we’re seeing in some of these older influencers is really refreshing.”
Alison Bryant, senior vice president, AARP
“I wanted to expand my world. I felt that I was older, that my world was shrinking. People were moving, people were ill. So, I started my blog because I wanted to reach out. After that, I heard about this thing called Instagram. It was really hard learning it. I really stumbled my way in. I’m shocked because most people who follow me are 30 and 40 years younger.”
Sandra Sallin, an 80-year-old blogger and artist, with 25,300 followers on Instagram Social media’s 70-up ‘grandfluencers’ debunking aging myths, AP News, September 2, 2021, https://tinyurl.com/Grandfluencers
Judy’s decline has been nothing but gut-wrenching and has placed me in a club with the tens of millions of other Americans who serve as a primary caregiver for a loved one. Admittedly, transitioning from being with an N.F.L. franchise to full-time caregiver wasn’t easy. It’s still not easy. The playbook is either changing by the minute or so numbingly repetitious, you lose track of time and self. . . I’ve learned firsthand caregiving is all-consuming. It is mentally and physically exhausting. Sometimes you just need a break. When Judy is having a good day, then my day is good. But then there are dark days — those days that are so full of frustration and anger, they have me feeling like a failure and pondering the unfairness of the disease. I’ve spent my entire life preparing for some of the biggest games a person could play, but nothing can prepare you to be a caregiver who has to watch a loved one slip away.
Tom Coughlin, former head coach of the New York Giants, Nothing Could Prepare Me for Watching My Wife Slip Away, *New York Times, August 24, 2021, https://tinyurl.com/NothingCouldPrepare
“Don’t forget about the caregivers,” Coach Coughlin urges us. Congress has a historic opportunity to invest in care by passing comprehensive paid family and medical leave in the budget reconciliation bill. It’s time to care.
Ellen Bravo, co-founder and strategic adviser, Family Values @ Work, a national network working for paid leave and other care policies, Coach Coughlin and the Caregiver’s Love and Heartbreak, *New York Times, September 4, 2021, https://tinyurl.com/LoveAndHeartbreak
August 31, 2021
Funding from the American Rescue Plan Act is a once-in-a-generation opportunity to address the economic and public health crises affecting Massachusetts residents, through investing in affordable housing. By investing significantly in affordable housing, along with other critical sectors such as small business, childcare, infrastructure, digital access, and public health, the Commonwealth and its municipalities can move toward a more equitable future in the aftermath of the COVID-19 pandemic. Indeed, we must not miss this opportunity to begin to close the racial wealth gap and to address racial disparities in health outcomes.
Katherine Martinez, director of economic development, and Elana Brochin, program director for health equity, the Massachusetts Association of Community Development Corporations, ARPA funds open the door for major investment in housing, CommonWealth Magazine, August 25, 2021, Link: ARPA-funds-open-the-door-for-major-investment-in-housing
“We’re going backwards. . . First of all, transparency in government is our due, but in this case, we’re talking about seniors in facilities where in many cases they really have no choice. . . People have a right to know what the situation is with respect to COVID in each of these facilities. . . When we were told [by DPH officials] that a lot of changes were coming to their reporting, this wasn’t what we had in mind.”
Barbara Anthony, senior fellow in health care policy at the Pioneer Institute, State backsliding on COVID-19 data transparency, *Boston Globe, August 21, 2021, Link: state-backsliding-covid-19-data-transparency
Under President Biden’s infrastructure plan, the federal government will be spending an additional $400 billion for home care for seniors and people with disabilities. To accompany that, federal lawmakers should pass legislation or issue regulations ensuring that vulnerable individuals like my aunt, for whom this money is intended to provide a real opportunity to get the care they need, can ask a neutral decision-maker to review initial home care determinations made by managed care organizations. We owe them at least that much.
Aytan Y. Bellin, elder law and managing attorney of Bellin & Associates LLC My aunt’s ‘Kafkaesque journey’ to get the home care she needs, STAT News, August 26, 2021, Kafkaesque-journey
“I’m bored to tears. I do virtually nothing. Today, nothing awful happened, nothing half-awful happened, nothing brilliant happened, nothing half-brilliant happened. . . I’m in my room all day.”
Ted Freeman-Attwood, 90, a resident in a Toronto, CA, nursing home, said in January, two weeks after he’d received his first dose of the Moderna vaccine
“This is my first time outside in a year. This is more fun than I’ve had in a year.”
Mr. Freeman-Attwood, in June, during an outing to a dollar store one block away from his nursing home – A Return to Freedom, After Nearly a Year Trapped Indoors Under Lockdown, *New York Times, August 12, 2021, Link: Canada-Toronto-nursing-home
“I am exhausted. The vaccine is like a mini fortress around the most vulnerable, where even though there is a fire raging outside, those inside stay safe.”
Dr. Joshua Uy, a geriatrician and medical director of a nursing home in Philadelphia, who said he was “ecstatic about the [Covid-19 vaccination] mandate.” Nursing Homes Face Quandary: Vaccinate Staff or Don’t Get Paid, *New York Times, August 19, 2021, Link: coronavirus-nursing-homes-vaccination
“All people with disabilities should receive services in the most integrated setting appropriate.”
Ron Hager, managing attorney for education and employment at the National Disability Rights Network – k, A Boy with an Autoimmune Disease Was Ready to Learn in Person. Then His State Banned Mask Mandates, Pro Publica, August 25, 2021, Link: autoimmune-disease-was-ready-to-learn-in-person
“We are not going to sit by as governors try to block and intimidate educators protecting our children.”
President Joe Biden, A Boy with an Autoimmune Disease Was Ready to Learn in Person. Then His State Banned Mask Mandates, Pro Publica, August 25, 2021, Link: autoimmune-disease-was-ready-to-learn-in-person
“It makes sense to take advantage of every tool possible to decrease transmission to make sure kids can go to school safely and to prevent children from being required to do distance learning.”
Dr. Dean Blumberg, chief of pediatric infectious diseases at UC Davis Children’s Hospital, A Boy with an Autoimmune Disease Was Ready to Learn in Person. Then His State Banned Mask Mandates, Pro Publica, August 25, 2021, Link: autoimmune-disease-was-ready-to-learn-in-person
My 103-year-old Italian grandmother enjoyed exercise, making the best lasagna you’ve ever tasted, and being with family. I started filming her cooking about five years ago when she was 99 years old. I filmed her at the gym because I thought, no one will believe that my grandmother is still working out. I asked her if she could give me a few words of wisdom, and that was the beginning of this adventure.
Filmmaker Sky Bergman relating that her grandmother, Evelyn Ricciuti, was the inspiration behind the documentary film, Lives Well Lived. Celebrating the Secrets, Wit, & Wisdom of Age, PBS, Link: www.pbs.org/show/lives-well-lived/
J. T. Hill doesn’t want your help. He’d rather walk to town, risking his life at every intersection, instead of asking for a ride. He’d rather make his students call out their questions in class than tell them the truth: He can’t see them raise their hands. This is the stubborn, hurt young man we meet in “Blind Man’s Bluff,” Hill’s memoir.
A Memoir of Pretending to See, *New York Times, August 23, 2021 (updated), Link: blind-mans-bluff
“That’s the goal. I’m going after it.”
Morgan Stickney, Paralympic swimmer in pursuit of the world record in the 400-meter freestyle, Morgan Stickney’s Race Against the Clock, *New York Times, August 29, 2021, Link: https://nyti.ms/3sXutBK
Accumulating money for retirement is hard, but decumulating it is tricky, too. Even the experts have trouble saying how to pace your spending so you can enjoy retirement without exhausting your savings before you die. You can’t know for sure how long you’ll live, whether you’ll suffer a costly illness or how markets will perform.
How to Enjoy Retirement Without Going Broke, *New York Times, August 27, 2021, Link: how-to-enjoy-retirement-without-going-broke
[T]here’s a general consensus that for any type of cancer screening, if you have a 10-year life expectancy, then there’s a high chance that you will benefit from cancer screening.
Does breast density matter for older women’s risk of cancer?, STAT News, August 27, 2021, Link: breast-density-cancer-risk-older-women
“This legislation ]Choose Home Care Act] would essentially allow home health agencies to compete with skilled nursing facilities.”
Anne Tumlinson, ATI Advisory Founder and CEO, Choose Home Care Act Presents Senior Living Opportunities, Draws Skilled Nursing Backlash, Senior Housing News, August 29, 2021, Link: choose-home-care-act
August 24, 2021
What would it look like if you stopped trying to cure autistic people and tried to find work for them? . . . Whether you know it or not, you know someone with autism. We often talk about autism while talking past autistic people. . . If you truly care about autistic people, listen to what they need.
Eric Garcia, He Is a Journalist with Autism, but in His Book, That’s Not the Whole Story, *New York Times, August 18, 2021, https://nyti.ms/3sm2b3K
“If nursing homes believe that they have a legitimate defense to the fact that when [the pandemic] happened, they were caught short in a way that reasonable people would say, ‘It’s not their fault,’ let them tell that to a jury. Let them tell that to a judge.”
Michael Festa, AARP Massachusetts, ‘Impossible Lawsuit’: Families Find Few Options To Sue Long-Term Care Over COVID Deaths, WBUR News, August 19, 2021, Link: Impossible Lawsuit
“Nobody is immune from aging, and I want to be at a facility that’s caring for me, that has empathy for the patients, that provides quality care, that provides basic essentials such as water and food. I don’t even know if that was provided or not.”
Suzanna Smith, whose mother, Masae Hodges, died at a nursing home in May 2020, ‘Impossible Lawsuit’: Families Find Few Options To Sue Long-Term Care Over COVID Deaths, WBUR News, August 19, 2021, Link: Impossible Lawsuit
“Not a lot has changed.” When I first got into advocacy 21 years ago, we were talking about staffing, the need for more staff. If you don’t have enough help, no matter how hard they work, if there aren’t enough of them, they can’t give the kind of care we all would want.”
Arlene Germain, Massachusetts Advocates for Nursing Home Reform,She Lost Her Husband To COVID. His Death Could Help Other Families Sue Nursing Homes, WBUR News, August 20, 2021 Link: Families Sue Nursing Homes
The decade ahead will be defined by the U.S.’s ability to address issues like ongoing disparities in health care, access to care within communities, and uneven adoption of health technologies such as telehealth, electronic health records, patient portals, and the like with the same urgency, resourcefulness and innovation we’ve applied during the Covid-19 crisis. Nurses are at the center of these efforts. Let’s prioritize, preserve, and accelerate nurse-led advancement which, in turn, will support outcomes, drive new care models, and help build a more equitable health care system as we work toward a “new normal.”
Look to nurses to help accelerate the transformation of health care, STAT News August 20, 2021, Link: look-to-nurses-to-help-accelerate-the-transformation-of-health-care
“It’s not just a problem within the person, but societal issues that need to be addressed.”
Shari Jager-Hyman, assistant professor of psychiatry, University of Pennsylvania’s School of Medicine, speaking about suicides, Pandemic Unveils Growing Suicide Crisis For Communities Of Color, Science Friday, August 20, 2021, Link: Suicide Crisis Communities of Color
“We did see that a number of workers fairly early on in the pandemic had quit because they were worried about their own safety. [Mandatory vaccine] is one opportunity to attract people who have not been willing to work in the facilities.”
Lori Smetanka, executive director of Consumer Voice, Biden’s No-Jab-No-Job Order Creates Quandary for Nursing Homes, Kaiser Health News, August 20, 2021, Link No jab no job
“The risk isn’t that [nursing home workers] go to the hospital down the street — the risk is they go to Starbucks or Target. It’s great if you want to mandate the vaccine, but you also want to make sure these workers are making a living wage.”
David Grabowski, professor of health care policy, Harvard Medical School, Biden’s No-Jab-No-Job Order Creates Quandary for Nursing Homes, Kaiser Health News, August 20, 2021, Link No jab no job
“Part of what the pandemic did is to expose some of the underlying problems in nursing homes. [The pandemic] may present an opportunity to correct some of the long-standing problems and reduce some of the key risk factors for neglect and mistreatment.”
Nina Kohn, professor, Syracuse University School of Law and distinguished scholar in elder law at Yale Law School, After Pandemic Ravaged Nursing Homes, New State Laws Protect Residents, Kaiser Health News, August 20, 2021, Link: New State Laws Protect
“If I stopped working, I’d be gone.”
Style icon, Iris Apfel, as she is about to turn 100 years old, The Stylish Centenarian, Wall Street Journal, August 21, 2021, Link: The Stylish Centenarian
If we are serious about paving the way for breakthroughs in the treatment, perhaps even the prevention, of Alzheimer’s disease, then we need to start managing competitive collaborations in more creative ways.
Combating Alzheimer’s Disease Through Effective Public-Private Partnerships, Health Affairs Blog, August 18, 2021, Link: Alzheimer’s Public Private Partnerships
Veterans who served in Afghanistan may be experiencing a range of challenging emotions related to the U.S withdrawal from the country and the events unfolding now. Veterans who served during other conflicts also may be feeling strong emotions, as they may be reminded of their own deployment experiences.
From the VA: Let’s talk about Afghanistan – resources to support veterans and their families, Administration on Community Living, August 20, 2021, Link: Afghanistan veteran support resources
“This simplistic notion that the labor market will just produce the number of nurses we need just isn’t true for health care. Nursing is in crisis, and maybe the pandemic is the straw that will break the camel’s back.”
Professor Patricia Pittman, director of the Health Workforce Research Center at George Washington University, ‘Nursing Is in Crisis’: Staff Shortages Put Patients at Risk, *New York Times, Link: Nursing in crisis
“The housing crisis to come will be worse than the Great Depression.”
Ananya Roy, professor of urban planning, social welfare, and geography at U.C.L.A. and director of the Institute on Inequality and Democracy, Want to Solve the Housing Crisis? Take Over Hotels, *New York Times, August 19, 2021, Link: housing-crisis-hotels
This [housing] crisis also underscores existing inequities in America. Those who’ve lost employment income in the pandemic face three times greater odds that they are in arrears.
How Many People Are at Risk of Losing Their Homes in Your Neighborhood?, *New York Times, July 28, 2021, Link: How many are at risk?
“[T}hrowing more money into home care will work only if the money is targeted for recruiting, training and retaining workers, as well as providing benefits and opportunities for career growth. [I] doubt significant improvements will occur if we just put money out there to hire more workers. The problem is the people who are in these jobs always get the same amount of pay and the same low level of respect no matter how many years they are in the job.”
Joanne Spetz, director, Health Workforce Research Center on Long-Term Care at the University of California-San Francisco, Desperate for Home Care, Seniors Often Wait Months With Workers in Short Supply,Kaiser Health News, June 30, 2021, Link: desperate-for-home-care
“The scenario we feared in 2020 is, unfortunately, now, a reality.”
Becky Hultberg, president, Oregon Association of Hospitals and Health Systems, States gripped by Delta variant face case surge with fewer health workers, Politico, August 23, 2021, Link: Gripped by Delta Variant
August 17, 2021
But when workers at my grandma’s facility tested positive, administrators reached for the same tactic they’ve used over and over in the last 18 months. They confined residents to their rooms. That means no communal lunches or dinners, no card games or quiz nights, and worst of all, no visitors. My grandma is trying to wheedle an exception for a family funeral; if she manages to get out for a day, the nurses have already warned that she’ll need to quarantine for two weeks once she returns. Meanwhile, unvaccinated staff are allowed to come and go as they please.
Naomi Kresge, granddaughter of a 94 year old woman living in a Cleveland, OH nursing home, Unvaccinated Staff Put Nursing Home Residents at Risk, Bloomberg News, August 14, 2021, Unvaccinated Staff
Grue is shocked by the additional hurdles he has to overcome: “Social Services poses a hundred tiny demands as to how I should formulate my needs, how, precisely, my wretchedness should be described.” Later, his hard-won independence as a disabled adult, living on his own, threatens to derail his government assistance. “Social Services casts me a knowing wink, it asks whether I am truly OK, OK enough to leave Social Services alone, to let it turn its mild face rather toward those who are content to remain wretched.” In an enlightening act, his parents hand over the entirety of his childhood medical records and case notes, so he can read for himself the “horizon of expectations” his doctors and the health care system had predicted for him.
Jan Grue, who holds a doctorate in linguistics and teaches at the University of Oslo, was diagnosed as a child with a rare form of spinal muscular atrophy, Michael J. Fox Reviews a Thoughtful Memoir on the Challenges of Living With Disability, I Live a Life Like Yours, A Memoir, By Jan Grue, *New York Times, August 15, 2021, Living with disability
Policy experts and decision makers can debate the details, but America needs to stop taking its caregivers for granted. Paid or unpaid, these workers are looking after our mothers and grandfathers, our sisters, and uncles. They assist in dressing, bathing, and feeding some of the most vulnerable among us, helping them cope with the aches and pains and fears and frustrations of growing older. They deserve better than to be casually abandoned. It’s worth remembering that many of us will eventually find ourselves among their ranks.
Who Will Take Care of America’s Caregivers?, *New York Times, August 12, 2021, Who will take care of America’s caregivers?
“Every year I had to fight for it.”
Becca Meyers, a three-time Paralympic gold medalist who is deaf and blind, describing her repeated requests since 2016,for her mother to accompany her to each competition as an informal personal assistant and official part of the team, With Games Approaching, Paralympians Say They Need More Support, *New York Times, August 10, 2021, https://tinyurl.com/ParalympiansNeedSupport
Mikey Brannigan, a gold medal-winning runner who is intellectually disabled, still remembers the stress and confusion of being lost in an airport. . . Brannigan’s disquieting experience illustrates the kind of challenge many athletes with physical and intellectual disabilities encounter as they travel to compete.
With Games Approaching, Paralympians Say They Need More Support, *New York Times, August 10, 2021, https://tinyurl.com/ParalympiansNeedSupport
In the Boston area, many nursing homes deployed different measures to help control and remedy high infection rates. . . [S]ome nursing homes did not take CDC guidelines as seriously; caretakers moved between treating infected and non-infected patients, and infected patients were housed with non-infected patients.
Why did some nursing homes experience more COVID-19 deaths and infections than others?, Pioneer Institute, July 8, 2021, why-did-some-nursing-homes-experience-more-covid-19-deaths-and-infections-than-others
The U.S.O.P.C. has cited the restrictions on the size of national delegations as the reason for denying Maria Meyers a spot on the team traveling to the Paralympics. Yet many of Becca Meyers’s supporters have noted that the restrictions have not forced Olympic golfers to play without caddies or equestrian competitors to make do without grooms to tend to their horses. The disparity in defining essential personnel, Meyers and other Paralympians said, reflects a persistent misunderstanding of what constitutes equitable treatment of disabled athletes.
With Games Approaching, Paralympians Say They Need More Support, *New York Times, August 10, 2021, https://tinyurl.com/ParalympiansNeedSupport
The pandemic has brought new attention among policymakers and the public to the longstanding unmet need for HCBS and direct care workforce shortage, driven by low wages, high turnover, and limited opportunities for career advancement.
State Medicaid Home & Community-Based Services (HCBS) Programs Respond to COVID-19: Early Findings from a 50-State Survey, Kaiser Family Foundation, August 10, 2021,https://tinyurl.com/KFFHCBSWorkforceShortages
“It will be in textbook. [It’s] a pivotal paper.”
Leanne Redman, energy balance physiologist, Pennington Biomedical Research Institute, Baton Rouge, LA, What We Think We Know About Metabolism May Be Wrong, New York Times, August 12, 2021, https://tinyurl.com/KnowAboutMetabolismWrong
[I am] “blown away” by its findings. “We will have to revise some of our ideas.”
Rozalyn Anderson, professor of medicine, University of Wisconsin, Madison, WI, What We Think We Know About Metabolism May Be Wrong, New York Times, August 12, 2021, https://tinyurl.com/KnowAboutMetabolismWrong
“There is a myth of retaining youth. That’s not what the biology says. In and around age 60, things start to change. There is a time point when things are no longer as they used to be.”
Dr. Samuel Klein, Director, Center for Human Nutrition, Washington University School of Medicine, St. Louis, MO, What We Think We Know About Metabolism May Be Wrong, New York Times, August 12, 2021, https://tinyurl.com/KnowAboutMetabolismWrong
A slower metabolism after age 60 . . . may mean that crucial organs are functioning less well as people age. It might be one reason that chronic diseases tend to occur most often in older people. . . And around age 60, no matter how young people look, they are changing in a fundamental way.
What We Think We Know About Metabolism May Be Wrong, New York Times August 12, 2021, https://tinyurl.com/KnowAboutMetabolismWrong
“In most office buildings, you’re dealing with large open spaces, and it’s much easier to insert nonbearing partitions to make your walls. You can readily subdivide those office spaces without the expense of destruction and heavy structural redoing.”
Alberto Cárdenas, principal with DHK Architects, which has converted schools into housing, What if we turned empty offices into housing?, *Boston Globe May 2, 2021 (updated), https://tinyurl.com/EmptyOfficesIntoHousing
Treating mental health as physical health is a transformation long overdue, and not just in sports.
What Simone Biles Was Saying, *Wall Street Journal, July 29, 2021, https://tinyurl.com/WhatSimoneBilesWasSaying
“The ADA was created to ensure that people with disabilities would have fuller lives and equal rights. This pandemic has laid bare the disparities that still exist and their devastating results. We must learn our lesson and make the changes that will help us realize the unfulfilled promise of the Americans with Disabilities Act.”
Carol Steinberg, Boston-based attorney, disability activist, writer, and speaker, The Americans with Disabilities Act is 30. Why do we still have so much work to do to improve access?, *Boston Globe Magazine, November 29, 2020, https://tinyurl.com/YetToFufillPromise
“[Covid] made people worry more about quality of care, worry about the isolation, whether someone was getting the care that they should have been getting. And so, it’s understandable that some families chose to bring someone home when they were in the position to be able to do that.”’
Christina Irving, Director, Client Services, Family Caregiving Alliance, The decision to pull loved ones out of nursing homes when the pandemic hit was a great alternative — for those who could afford it, STAT News, August 12, 2021, https://tinyurl.com/NHGreatAlternative
“ ‘White, wealthier folks are definitely going to take a lesson from Covid and look for more home-based care options’ because of the high-profile problems that patients in long-term care facilities faced during the pandemic. ‘Communities of color and poor folks are going to be … left with similar options to what they had before and during the pandemic.’ ”
Sue Peschin, President and CEO, Alliance for Aging Research – The decision to pull loved ones out of nursing homes when the pandemic hit was a great alternative — for those who could afford it, STAT News, August 12, 2021, https://tinyurl.com/NHGreatAlternative
“Your level of protection varies depending on your ZIP code, but despite its faultiness, the moratorium has been effective at reducing evictions across the country, and that’s what makes it a critical public health protection strategy in the face of the pandemic, especially in the development of the delta variant.”
Emily Benfer, visiting law professor at Wake Forest University and chair of the American Bar Association’s COVID-19 Task Force on Eviction, Local Judges Decide Fate of Many Renters Facing Eviction, Stateline PEW, August 13, 2021, https://tinyurl.com/LOcalJudgesDecideFate
“Throughout our history, older people have achieved much for our families, our communities, and our country. That remains true today and gives us ample reason this year to reserve a special day in honor of the senior citizens who mean so much to our land. For all they have achieved throughout life and for all they continue to accomplish, we owe older citizens our thanks and a heartfelt salute. We can best demonstrate our gratitude and esteem by making sure that our communities are good places in which to mature and grow older — places in which older people can participate to the fullest and can find the encouragement, acceptance, assistance, and services they need to continue to lead lives of independence and dignity.”
President Ronald Reagan, comments when he signed Proclamation 5847 in 1988 and designated August 21 as National Senior Citizens Day, National Senior Citizens Day
[The] Pioneer [Institute] urges the state to immediately reinstate the so-called Weekly Report, which contained clear and prominent disclosure of cases and deaths inside individual nursing homes.
Pioneer Institute Public Statement on the Commonwealth’s Discontinuance of the COVID-19 Weekly Public Health Report, The Pioneer Institute, August 16, 2021, Pioneer Institute Release
“Every day I have to explain to my mom why she can’t leave her room, why nobody is visiting her, why she can’t visit her friend across the hall. There is no light at the end of the tunnel right now.”
Mary Ellen Dayan-Varnum whose 85-year-old mother is a resident in a nursing home in Blountstown, FL Florida Nursing Homes Limit Visitors as Covid-19 Cases Flare *Wall Street Journal, Florida Nursing Homes Limit Visitors
“Everyone who is eligible for benefits under the programs we administer should receive them.”
Kilolo Kijakazi, Acting Commissioner of Social Security, Social Security Expands Compassionate Allowances Program for People with Severe Disabilities, Social Security Administration, August 16, 2021, Social Security Administration Compassionate Allowances
“[It] just seems to show a recognition that those of us in wheelchairs exist and that they want to welcome us.”
Chris Hoeh, a Dignity Alliance Massachusetts member, commenting on restaurants that have been built with accessibility in mind, Outdoor dining mixed bag for those with disabilities, CommonWealth Magazine, August 15, 2021, Outdoor Dining Mixed Bag
“The entire thinking of the approach to treating depression is pretty much confined in that little box,” said Lisa Harding, a psychiatrist at the Yale School of Medicine. . . . Researchers are now exploring those new treatments and, in parallel, are seeking to advance the biological understanding of mental health disorders.
‘Stuck in a cul-de-sac’: Researchers are finally breaking away from the central dogma of depression, STAT News, August 16, 2021, Stuck in a Cul de Sac
“Some of the hardest conversations I have in my work involve telling families managing the debilitating chronic illness of a loved one at home that they are essentially on their own. Most do not realize that medical insurance does not pay for long-term home care.”
Dr. Lynn Hallarman, a former director of palliative care at Stony Brook University Hospital in New York and a consultant to the National Center for Equitable Care for Elders based at Harvard University, What I’ve Learned Over a Lifetime of Caring for the Dying, *New York Times, August 11, 2021, Lifetime of Caring
August 10, 2021
. . . some union leaders understand the larger issue at stake: International Federation of Professional and Technical Engineers and the teachers’ union in New York City, for instance, have both supported mandate policies. During a July 28 interview on C-SPAN’s “The Washington Journal,’’ [AFL-CIO president Richard] Trumka said, “Yes we do,’’ when asked if the AFL-CIO supports vaccine mandates. “If you are coming back into the workplace, you have to know what’s around you.’’ He went on to say that “everybody’’ in the workplace would be jeopardized if a worker is not vaccinated.
That’s Public Health and Safety 101. Recognizing the critical importance of one of Trumka’s last decisions would be a fitting tribute to him.
Divided over vaccine mandates, unions should heed the words of late AFL-CIO leader, *Boston Globe, August 7, 2021, https://tinyurl.com/UnionsHeedWordsAFLCIO
“This is our ticket out of the pandemic. Why are we delaying mandating vaccines?”
Scott LaRue, chief executive, ArchCare, a New York long term care system, Nursing Homes Confront New Covid Outbreaks Amid Calls for Staff Vaccination Mandates, New York Times, August 4, 2021 https://tinyurl.com/NYTNursingHomesConfront
“I hope that it will be within the next few weeks,” Dr. Anthony Fauci says of an expected Food and Drug Administration decision to grant full approval to Pfizer’s covid shot. When it comes, Fauci expects many businesses and schools will quickly require vaccinations.“
‘Wave’ Of Mandates Coming Once FDA Fully Approves Vaccine, Fauci Says, Kaiser Morning Briefing, August 9, 2021, https://tinyurl.com/WaveOfMandates
The company [Good Samaritan Society-Deuel County nursing home in Clear Lake, South Dakota] said it had pinpointed the cause of the spread there and at other of its facilities: The breakthroughs had happened in the same homes where unvaccinated staff were testing positive, seemingly carrying the virus into the home from the community.
Nursing Homes Confront New Covid Outbreaks Amid Calls for Staff Vaccination Mandates, New York Times, August 4, 2021 https://tinyurl.com/NYTNursingHomesConfront
With infections increasing once more, and hospitalization rising among older adults, health experts offer a timely warning: a coronavirus infection can look different in older patients.
For Seniors Especially, Covid Can Be Stealthy, *New York Times, August 8, 2021, https://tinyurl.com/CovidCanBeStealthy
A growing number of nursing home and assisted-living operators say now is the time to prevent a more significant surge in the facilities as the delta variant sweeps through unvaccinated populations in outside communities.
As breakthrough covid infections rise, nursing home chains require that staffers be vaccinated, Washington Post, August 5, 2021, https://tinyurl.com/NursingHomesRequire
Of 4,961 unique older adults, atypical presentation characterized by functional decline or altered mental status was present in 24.9% and 11.3%, respectively. Atypical presentation was associated with older age, female gender, Black race, non-Hispanic ethnicity, higher comorbidity index, and the presence of dementia and diabetes mellitus. Those who presented typically were 1.39 times more likely than those who presented atypically to receive intensive care unit–level care.
Patient Factors and Hospital Outcomes Associated with Atypical Presentation in Hospitalized Older Adults With COVID-19 During the First Surge of the Pandemic, The Journals of Gerontology Series A, July 19. 2021, https://tinyurl.com/PatientFactorsHospitalOutcomes
For all the explosive controversy over the approval of the first treatment for Alzheimer’s disease in nearly 20 years, hardly any patients have actually gotten it yet. . . The combined Harvard Pilgrim Health Care and Tufts Health Plan has threatened not to cover Aduhelm unless Biogen lowers its price tag.
Alzheimer’s patients are in limbo as hospitals, insurers grapple with whether to offer Aduhelm, STAT News, August 4, 2021, https://tinyurl.com/InsurersGrapple
“A conservatorship should be a last resort, designed to benefit the conservatee rather than a mechanism designed to serve as a tool for the enrichment of third parties.”
Extract from probate court filing, Britney Spears Asks for Quick Hearing to Oust Her Father as Conservator, *New York Times, August 5, 2021, https://tinyurl.com/QuickHearing
“It’s not a public health strategy for any condition to just blame somebody into treatment and prevention.” Telling the unvaccinated that they’re being selfish “really runs counter to all the work it’s going to take to convince those folks to be vaccinated, to trust us that we have their best interests in mind.”
Rhea Boyd, MD, pediatrician and public health advocate, No, the Unvaccinated Aren’t All Just Being Difficult, *New York Times, August 6, 2021, https://tinyurl.com/ArentBeingDifficult
For the first time since February, the United States is averaging more than 100,000 new coronavirus cases a day, marking a resurgence that is hitting especially hard in states where large portions of the population remain unvaccinated.
Cases in the United States rise to their highest levels since February, *New York Times, August 9, 2021, https://tinyurl.com/HighestLevelsSinceFebruary
“The breakthrough cases that are sick enough to be hospitalized [are] generally older people and those with underlying conditions and who are immunocompromised. So, the people who need to be really careful right now [are] older people and those who have underlying conditions and those who are immunocompromised.”
Davidson Hamer, MD, Boston University infectious diseases specialist, Massachusetts coronavirus breakthrough deaths: 73% had underlying conditions, median age was 82.5, Boston Herald, August 8, 2021, https://tinyurl.com/MACoronavirusBreakthrough
“Despite vaccination rates above the national average, the growing spread of the Delta variant makes clear that we need to increase our vaccination rates substantially to better protect our patients, residents and employees.”
Harry Wilson, Chief Executive, Genesis Healthcare, Covid-19 Vaccine Mandates Are on the Rise for Nursing Home Workers, *Wall Street Journal, August 6, 2021 (updated), https://tinyurl.com/MandatesOnTheRise
The industry group for Massachusetts nursing homes applauded the new mandate, which the group has called for since May. Life Care Centers of America, a large, national nursing home operator with facilities in Massachusetts, said it supports the state’s move. The company hasn’t enacted a companywide requirement but said it would comply with federal and state changes as they come.
Covid-19 Vaccine Mandates Are on the Rise for Nursing Home Workers, *Wall Street Journal, August 6, 2021 (updated), https://tinyurl.com/MandatesOnTheRise
Together, the organization will represent more than $2.1 billion in home care services revenue.
Honor to Acquire Home Instead, Creating $2 Billion Home Care Services Company, Home Health Care News, August 6, 2021 (updated), https://tinyurl.com/HonorToAcquireHomeInstead
Brigham and Women’s Hospital boosted inpatient capacity and access to care when providers treated acute patients at home;
Hospital-At-Home Program Boosted Inpatient Capacity, Access, Study Finds, *Modern Healthcare, August 6, 2021, https://tinyurl.com/BWHHospitalAtHome
August 3, 2021
The need for innovation and reform in the [nursing home] industry is glaring. As the pandemic drove home, the status quo is as undesirable as it is unsustainable. Something has got to give, for the sake of the millions of seniors who will continue to rely on these institutions.
Nobody Wants to Live in a Nursing Home. Something’s Got to Give, *New York Times, August 1, 2021, https://tinyurl.com/SomethingsGotToGive
Guardianship and conservatorship are complex relationships that should always remain a last resort, to be used only when less drastic means have been unsuccessful. These appointments cannot be based on value judgments about “quality of life” for individuals who need our help. The sole purpose is to assist in achieving whatever life choices the individual would make for themselves.
Scott Harshbarger, former Massachusetts Attorney General, and Paul Lanzikos, former Massachusetts Secretary Executive Office of Elder Affairs, A sensible state response to the Britney Spears case, CommonWealth Magazine, August 1, 2021, https://tinyurl.com/StateResponseSpearsCase
“The corrosive effect of this change has to be underscored.”
Kelly Bagby, a senior attorney with the AARP Foundation, commenting on the Trump-initiated policy to significantly reduce financial penalties assessed to poorly performing nursing homes which has now been reversed by the Biden Administration, Trump-era Limit on Nursing Homes Safety Fines Is Lifted, New York Times, July 29, 2021, https://tinyurl.com/ReversalOfTrumpRule
“My goal is to bring him home,” Ms. [Terry] Driscoll [of Yarmouth Port, MA] said [about her 72-year-old husband, Ken]. Her dilemma: She cannot shoulder his exhausting care alone, and she cannot find home care aides to hire.
For Older Adults, Home Care Has Become Harder to Find, New York Times, July 24, 2021, https://tinyurl.com/HomeCareHarderToFind
The bigger problem, industry sources say, is growing demand [for home care]. Whereas nursing home occupancy has declined for years and fell further during the pandemic, and assisted living is at about 75 percent of capacity, the number of people seeking home care keeps increasing.
For Older Adults, Home Care Has Become Harder to Find, New York Times, July 24, 2021, https://tinyurl.com/HomeCareHarderToFind
About one in four people with mental-health concerns turn to a clergy member before seeking help from clinical professionals, according to the U.S. Department of Health and Human Services, giving faith leaders a unique window on the mental health of many Americans.
The Religious Leaders on the Front Lines of Mental Health, Wall Street Journal, July 22, 2021, https://tinyurl.com/ReligiousLeadersMentalHealth
With greater longevity, the doubling of the divorce rate since the 1990s for people over 50 and evolving social norms, older people . . . are increasingly re-partnering in various forms. . . Social scientists comment on the resourcefulness of these older couples, who are creating ways to enjoy the intimacy and emotional support of marriage or cohabitation . . . have confirmed they do — while avoiding caregiving expectations.
Older Singles Have Found a New Way to Partner Up: Living Apart, New York Times, July 16, 2021, https://tinyurl.com/NYTOlderSinglesLivingApart
“We want opportunities for states to be able to tailor the settlement dollars to the needs of the population in their state, but we also know that, especially when it comes to drug policy, states don’t always make health decisions that go with the evidence. . . [State officials] have to put their money where their mouth is if they really want to help people who have an opioid use disorder, or help prevent it, then they have to get behind programs and services that have a track record of working.”
Kelly Dineen, director of the health law program at Creighton University’s law school, States could get billions from opioid lawsuits. They have to decide how to spend it, STAT News, July 30, 2021, https://tinyurl.com/BillionsFromOpiodLawsuits
“We knew about [the] Delta [variant] months ago . . .and that’s when we should have pulled out all the stops.”
Eric Topol, director and founder of Scripps Research Translational Institute, who has been among those critical of the FDA’s perceived slowness in finishing the review of Pfizer’s application for the formal approval of its Covid-19 vaccine, FDA, under pressure, plans ‘sprint’ to accelerate review of Pfizer’s Covid-19 vaccine for full approval, STAT News, July 30, 2021, https://tinyurl.com/SprintToAccelerate
“I am sure there will be a significant pickup of evictions because the number of people who are behind is about double what you would see in a normal economy.”
Mark Zandi, chief economist of Moody’s Analytics, Evictions are about to restart as tenants wait on billions in unspent rental aid, *Washington Post, July 30, 2021, https://tinyurl.com/EvictionsRestart
When Congress created Supplemental Security Income in 1972, it left no question about its intentions. The program, lawmakers wrote, was “designed to provide a positive assurance that the nation’s aged, blind and disabled people would no longer have to subsist on below-poverty-level incomes.” Today, it helps ensure the opposite.
How Disabled Americans Are Pushing to Overhaul a Key Benefits Program, New York Times, July 30, 2021, https://tinyurl.com/OverhaulKeyBenefitsProgram
SSI accounts for just five percent of the benefits paid by the Social Security Administration; Social Security accounts for 95 percent. There are approximately eight times more Social Security beneficiaries than there are SSI recipients. Nevertheless, SSA spends almost as much to administer SSI as it does to administer Social Security.
The Pressing Need to Update, Expand, and Simplify SSI, Nancy J. Altman, Member, Social Security Advisory Board, Undated, https://tinyurl.com/UpdateExpandSimplifySSI
Our committee’s investigation and report focus on the underlying governance failures that created a perfect storm for the preventable tragedy that occurred at the Soldiers’ Home. . .[C]ommittee members concluded that [Mark Pearlstein’s (investigator commissioned by Governor Charlie Baker)] report raised more questions than answers. He corroborated the “how” of those fateful few days, whereas we asked, “Why?”
Representative Linda Dean Campbell and Senator Michael Rush, The Legislature issued its own report on the Holyoke Soldiers’ Home COVID outbreak. Here’s what we found. *Boston Globe, July 29, 2021 (updated), https://tinyurl.com/HolyokeSoldiersCovid
The new wave [of Covid infections] is likely to crash everywhere.
Who’s against the jab, *The Economist, July 31, 2021, https://tinyurl.com/WhosAgainstTheJab
To sustain and modernize veterans’ health care for the next generation, Congress, the [Veterans Health Administration], and veterans’ groups should learn from the [Military Health System’s] successes and work together to explore solutions.
To Transform Veterans Health Care for The Next Generation, We Should Learn From TRICARE, Health Affairs Blog, July 26, 2021, https://tinyurl.com/TransformVeteransHealthCare
“I fault Biogen for being dismissive about the ARIA [amyloid-related imaging abnormalities].”
Dr. Daniel Gibbs, retired neurologist who tested positive for Alzheimer’s disease and participant in the Aduhelm clinical trial, Retired neurologist with Alzheimer’s knows firsthand the risks of Biogen’s new drug, *Boston Globe, July 31, 2021, https://tinyurl.com/RetiredNeorologist
“Alzheimer’s proceeds slowly, almost invisibly, on its destructive course. It’s like the transition from summer to fall. The green leaves turn red or yellow or orange, but we never actually see them change. It’s just that, one day they’re green and suddenly, they’re not.”
Tom Keane, whose wife, Laurie Farrell, died at age 56 of Alzheimer’s Disease, How could my wife have Alzheimer’s? She was only 56.,*Boston Globe Magazine, January 7, 2020, https://tinyurl.com/SheWasOnly56
“What a devastating failure to act in a moment of crisis. As the delta variant surges and our understanding of its dangers grow, the White House punts to Congress in the final 48 hours and the House leaves for summer break after failing to protect families from losing both their homes and their ability to stay safe.”
Diane Yentel, president and chief executive of the National Low Income Housing Coalition, Eviction moratorium expires as renters face rising covid cases and lack of aid, *Washington Post, July 31, 2021, https://tinyurl.com/EvictionMoratoriumExpires
Caregivers in the “Sandwich Generation” have reported a steep decline in mental health, as did others who had to juggle changes in the amount of caregiving they had to provide to loved ones.
Caregiving During the Pandemic Takes a Toll on Mental Health, NPR Short Wave, August 2, 2021, https://tinyurl.com/CaregivingTollMentalHealth
“I never thought of that.” This is a common response I get when I explain that disability belongs in any conversation on equity, diversity, and inclusion, along with racial equity, class, gender, sexual orientation, immigration status and more.
Commissioner Rachel Arfa, Chicago Office for People with Disabilities, Chicago must remember the complex needs of those who live with disabilities, Chicago Tribune, August 2, 2021, https://tinyurl.com/RememberComplexNeeds
I’ll never forget my first nursing home placement in Ohio. As I entered the facility, I was hit with the smell of feces and a screaming ventilator alarm that no one answered. I knew I was not in a safe space, and that I would not last long there. That was 20 years ago, and I’ve been in and out of nursing facilities ever since.
Elaine Shelly who was diagnosed with multiple sclerosis in 1991. Home Care Workers Can Help Me Stay in My Own Home, Newsweek, July 30, 2021, https://tinyurl.com/HelpMeStayInHome
“It’s not only loneliness that was made worse by virtual contact, but general mental health: these people were more depressed, more isolated and felt more unhappy as a direct result of their use of virtual contact.”
Dr Yang Hu of Lancaster University co-author of the report: COVID-19, Inter-household Contact and Mental Well-Being Among Older Adults in the US and the UK, Virtual contact worse than no contact for over-60s in lockdown, says study, The Guardian, July 26, 2021, https://tinyurl.com/VirtualContactWorse
Starting in August, [West Virginia] plans to begin measuring the levels of disease-fighting antibodies in the blood of vaccinated nursing home residents, which could help indicate whether they need a booster shot.
Amid Covid Booster Debate, West Virginia to Check Immunity of Vaccinated Nursing Home Residents, Kaiser Health News, July 30, 2021, https://tinyurl.com/CheckNHImmunity
July 27, 2021
Licensers, employers, and others have asked about my status: disabled or not disabled? The first time I read this question in my new job’s onboarding forms, I was struck by the implied permanence and the dichotomy of the two choices.
Maggie Salinger who recently completed her internal medicine residency at Duke University and is now undertaking a Harvard Medical School Fellowship in General Medicine and Primary Care at Massachusetts General Hospital. Medicine needs to see what disability means, looks like, and feels like — in its ranks and in its patients, STAT News, July 23, 2021, https://tinyurl.com/WhatDisabilityMeansLooksFeels
. . . my daughter is now in a good group home. But what makes it good is not its size, but the expertise and dedication of the staff to provide for the individual needs of each resident. It is essential that families have options along a continuum of placements in order to meet the needs of individuals with disabilities.
Daniel P. Hallahan, professor emeritus of education at the University of Virginia, Where People with Disabilities Do Best, New York Times, July 25, 2021, https://tinyurl.com/WhereDisabilitiesDoBesr
As two physicians with a 30-year-old daughter who has cerebral palsy, mostly confining her to an electric scooter, we thought we would be able to use our resources to find appropriate housing. We can’t.
She is verbally gifted but has problems with managing the business of life. She needs support and supervision, but not too much of either. A nursing home would be a cruel warehousing of an outgoing young woman who loves to sing and act and is finishing a degree in English and education at a local university. A small group home would not provide the exposure to the wide world she loves. There are myriad levels of disability that require funding for many different solutions. One size does not fit all.
Debra Grossman and Gregg Lipschik, Where People with Disabilities Do Best, New York Times, July 25, 2021, https://tinyurl.com/WhereDisabilitiesDoBesr
“We all can make bad decisions at many points in our lives, but that doesn’t mean that we should have our rights taken away.”
Annette Swain, a Los Angeles psychologist who does neuropsychological assessments and says that because someone doesn’t always show good judgment, it doesn’t mean they lack capacity, Testing Britney Spears: Restoring Rights Can Be Rare and Difficult, New York Times, July 23, 2021, https://tinyurl.com/RestoringRightsRareDifficult
“Conservatorship and guardianship are like roach motels: you can check in, but you can’t check out.”
Kristin Booth Glen, a former New York State judge who oversaw guardianship cases and now works to reform the system, Testing Britney Spears: Restoring Rights Can Be Rare and Difficult, New York Times, July 23, 2021, https://tinyurl.com/RestoringRightsRareDifficult
Judge Glen once approved the termination of a guardianship of a young woman originally deemed to have the mental acuity of a 7-year-old. After three years of thoughtful interventions, the woman, since married and raising two children, had become able to participate fully in her life. She relied on a team for “supported decision making,” which Judge Glen called “a less restrictive alternate to the Draconian loss of liberty” of guardianship.
A supported decision-making approach has been hailed by the Uniform Law Commission, which drafts model statutes. It has said judges should seek “the least restrictive alternative” to conservatorship.
Testing Britney Spears: Restoring Rights Can Be Rare and Difficult, New York Times, July 23, 2021, https://tinyurl.com/RestoringRightsRareDifficult
“The capacity to process applications does not match the volume of need.”
Jim MacDonald, chief community investment officer at the United Way of Greater Kansas City
“ ‘We will see a historic wave of evictions and housing instability this summer and fall’ without further measures to protect tenants.”
Diane Yentel, president, and chief executive of the National Low Income Housing Coalition, End of Eviction Moratorium Puts Many Tenants at Risk of Losing Their Homes, Wall Street Journal, July 23, 2021, https://tinyurl.com/EndOfEvictionMoratorium
We call for all health care and long-term care employers to require their employees to be vaccinated against covid-19. The health and safety of U.S. workers, families, communities, and the nation depends on it.
Joint statement of the American Medical Association, the American Nurses Association and 55 other groups, Doctors, nurses, and other health groups call for mandatory coronavirus vaccinations for health workers, Washington Post, July 26, 2021, https://tinyurl.com/CallMandatoryVaccinations
Three women reflect on being disabled in America on the 30th anniversary of the American with Disabilities Act [3 women on being disabled in America, in their own words, Washington Post, July 23, 2021, https://tinyurl.com/3WomenDisabledInAmerica]
When I finally met blind role models who had similar backgrounds, it changed my life. . . I finally took pride in the fact that I was disabled.
Conchita Hernández Legorreta, a doctoral candidate in Washington, D.C. who immigrated to the United States with her family from Mexico one year after the passage of the ADA.
My walker has made my disability concrete, not just to others, but to myself. . . I feel worthy and strong, just the way I am.
Ruth Kogen Goodwin, a writer and editor from Southern California who has a condition called Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia
Being a Black, disabled woman is a daily exercise in continuously defying the expectations of others — an emotionally exhausting feat. . . I believe in the validity of my existence and views.
Robin Wilson-Beattie, a Black disabled woman who is a disability and sexual and reproductive health educator and writer living in the San Francisco Bay area
Affordable senior housing properties are a powerful platform for the place-based service integration and coordination needed to enable holistic, person-centered care. The older adult population has specific features that favor investing in on-site services at housing properties, particularly if these investments can help older adults successfully age in the community and avoid institutional care. Given the current focus on investing in both housing and in home and community-based services, there is an immediate opportunity to shape these investments, so they are aligned to better support the needs of low-income older adults.
Policy Options for Integrating Health and Housing for Low-Income Older Adults, Center for Consumer Engagement in Health Innovation, July 2021, https://tinyurl.com/INtegratingHealthHousing
Today, on the 31st Anniversary of the Americans with Disabilities Act (ADA), we celebrate the inclusion and access promoted by the landmark civil rights law for disabled Americans. Grounded in four core outcomes of full participation, equal opportunity, independent living, and economic self-sufficiency, the ADA prohibits discrimination on the basis of disability in contexts such as of public accommodation, employment, transportation, and community living and provides recourse for people with disabilities who faced discrimination.
Biden-Harris Administration Marks Anniversary of Americans with Disabilities Act and Announces Resources to Support Individuals with Long COVID, The White House, July 26, 2021, https://tinyurl.com/BidenHarrisMarksADAAnniversary
July 20, 2021
“My dad will go from being the coolest guy at a protest to the coolest guy in a wheelchair at a protest,’’ Chris Hoeh’s son said. “He’s just done amazing stuff. And whether he’s in a wheelchair or not, he’s going to keep doing that stuff.’’
Isaac Hoeh, Chris Hoeh’s son, as quoted in in a time of crisis, Chris Hoeh’s generosity comes full circle, Boston Globe, April 21, 2017, https://tinyurl.com/ChrisHOehsGenerosity
Live where you want. Choose who you live with. Earn money at a job you enjoy. Eat when you want. Choose how to spend your free time. Decide how you will spend your money.
30 Years of Community Living for Individuals with Intellectual and/or Developmental Disabilities (1987-2017), Administration on Community Living, https://tinyurl.com/30YearsCommunityLiving
Staff in skilled nursing facilities (SNFs) are essential health care workers, yet they can also be a source of COVID-19 transmission. . . Staff size, including staff members not involved in resident care, was strongly associated with SNFs’ COVID-19 outcomes, even after facility size was accounted for.
Larger Nursing Home Staff Size Linked to Higher Number Of COVID-19 Cases In 2020, Health Affairs, July 14, 2021, https://tinyurl.com/SizeLinkedToHigherNumber
Massachusetts and America need a professionalized care sector. These challenging times offer a perfect opportunity to provide one.
In the face of an eldercare crisis, Boston Globe, July 19, 2021, https://tinyurl.com/FaceEldercareCrisis
Ultimately, less-stringent zoning rules, better funding to recruit and train construction workers, and pro-housing policy will help prevent a large number of Americans from being permanently excluded from homeownership.
Here’s Who Will Be Left Behind in the Housing Boom, *New York Times, July 13, 2021, https://tinyurl.com/LeftBehindInHousingBoom
. . . he’s an Iraq war vet, two Purple Hearts. The second one is from an explosion which cost him both his legs and his left arm. And he’s also got PTSD. People call that kind of a hidden wound. But because he’s a triple amputee, people notice him, and then they see his military tattoos or bag.
Description of Matt Lammers, Iraq War Veteran, as related in A Disabled Veteran Tells His Story for National PTSD Awareness Day, Weekend Edition Sunday NPR, June 27, 2021, https://tinyurl.com/DisabledVeteranTellsStory
(T)his film [Best Summer Ever] is “part of a movement to highlight the talents of disabled actors and crew members who deserve a chance to work in the industry. Filmmaking is a crucial medium for raising awareness and promoting cultural enlightenment, and we hope a film like ours can be a steppingstone to continue these important conversations.”
Michael Parks Randa, Director, Best Summer Ever, https://tinyurl.com/IHCDBestSummerEver
The legislation fits in with a broader movement unfolding nationwide calling on officials to acknowledge historical injustices against marginalized groups and, in some cases, provide financial redress.
Referencing a proposal to provide reparations to surviving victims of the country’s largest mass sterilization program conducted under California law from 1909 to the 1970’s. California once forcibly sterilized people by the thousands. Now the victims may get reparations. Washington Post, July 9, 2021, https://tinyurl.com/ForciblySterilzed
July 13, 2021
Some dominant local and regional nonprofits, including Mass General Brigham, based in Boston, and Avera, based in Sioux Falls, S.D., billed the uninsured at their general hospitals some of their highest prices while also setting some of the most restrictive financial-aid policies for free care nationwide.
Hospitals Often Charge Uninsured People the Highest Prices, Wall Street Journal, July 6, 2021, https://tinyurl.com/HospitalsOftenChargeUnisured
“She’s not getting better, is she?” her daughter asked. As gently as I could, I explained that despite our best efforts, she was not. Her daughter started to cry as she realized that there would be no Hail Mary save, no reason to wait until Monday. There would be no miracle, but perhaps there would be peace. It was time to say goodbye.
Reflections of Dr. Daniela Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital, What Should Doctors Do When We Experience a Miracle? New York Times, July 2, 2021, https://tinyurl.com/ExpewrienceAMiracle
I almost died nine months ago — not from cancer, which I have and which my doctors tell me I will not survive — but from malnutrition, a side effect of cancer treatment.
Tracy Kennard, Cancer Took Away My Ability to Eat, but Not My Love of Food, New York Times, July 9, 2021, https://tinyurl.com/NotMyLoveForFood
The article “For this centenarian’s dilemma, a 21st-century answer” illustrates what every person who has an elderly or disabled relative has known for years, and what Dignity Alliance Massachusetts has been working to rectify: Most of us want to remain in our homes and communities, and unless you impoverish yourself, paying for needed care is impossible.
The current Medicare and Medicaid system is biased toward institutional care, underwriting a $240 billion nursing facility industry, the majority of which are for-profit companies. Most nursing facility residents do not need costly 24-hour skilled care but rather require the assistance of personal care aides, housekeeping, and meals, which can be provided in their home for much less money.
The additional home- and community-based funding available through the American Rescue Plan provides Massachusetts with an extraordinary opportunity to transform our system of long-term care and strengthen our delivery of services and supports to allow individuals to live independently in their homes and communities. These changes must be accompanied by reforms to financial eligibility requirements to allow individuals to live independently in the community with the supports they need without becoming impoverished.
Meg Coffin, CEO, Center for Living & Working Inc., Letter to the Editor. Boston Globe, July 12, 2021, https://tinyurl.com/ShouldntHaveToJumpThroughHoops
Change is beginning to happen in wages for low-wage workers, but until all nursing home workers’ wages are raised to (at least) living wages and until all workers receive health benefits and paid time off, the Government will continue to subsidize nursing homes by billions of dollars by providing needs-based public benefits and earned income tax credits to the nursing home industry’s low-paid workers. The nursing home industry is a heavily taxpayer-subsidized industry.
Nursing Home Industry is Heavily Taxpayer-Subsidized, Center for Medicare Advocacy, July 2021, https://tinyurl.com/HeavilyTaxpayerSubsidized
You have to look at history as a far more complex phenomenon than the sort of generational divide that is really artificial as framing right now.
So, why are we pitting a generation against each other, when, in fact, all they’re basically doing is pointing a finger at baby boomers for a few bad mistakes that took place during those years, not recognizing how society has transformed since the 1950s in fundamental, deep, institutional, personal, interpersonal ways?
Leonard Steinhorn, Professor, American University, quoted in Baby boomers on their role in social change and how luck affected their prosperity, PBS News Hour, July 8, 2021, https://tinyurl.com/BabyBoomersSocialChange
July 6, 2021
Juliet Bernstein, who turned 108 on Friday, has lived in her Cape Cod house for a half-century since she retired as a New York City teacher. Her mind is sharp, but she is physically frail and needs nearly round-the-clock care.
Bernstein cannot walk without pain, no longer cooks, and depends on home health aides to bathe, dress, and use the bathroom. But like many elderly people, she is determined to spend the final years of her long life in the modest home she loves.
“A sea monster ate it,” he growls.
“Huh? What?” Alberto gasps.
Massimo relaxes into a laugh. “Ma, no. This is how I came into the world.”
Massimo Marcovaldo, featured character in the animated film, Luca, explaining the reason for the absence of his right arm. In ‘Luca,’ a Character’s Disability Doesn’t Define Him, New York Times, July 2, 2021 https://tinyurl.com/LucaDisabilityDoesntDefine
Instead of judging by size, isn’t the right path to fully fund an array of high-quality options and afford people like Lauren the dignity of choice and the happiness they deserve?
David Axelrod, When It Comes to People Like My Daughter, One Size Does Not Fit All, New York Times, July 4, 2021, https://tinyurl.com/OeSizeDoesntFitAll
. . . ignoring the overlap between ageism and ableism reinforces a dual stigma. Consider people who make comments like, “I may need help getting around, but at least I’m not in a wheelchair!” Or, “I may be disabled, but at least I’m not old.” An ageist and ableist culture gives companies an excuse to look the other way and do nothing. And doing nothing perpetuates stereotypes and bias that have the potential to hurt every employee.
Why Ageism and Ableism Should Be Front and Center in Diversity, Equity and Inclusion Strategy, Forbes, June 27, 2021, https://tinyurl.com/AgeismAndAbleismStrategy
With a single melancholic click, I’d change the status from “Alive” to “Deceased.” And it was this mundane act that always brought on the tears.
Danielle Ofri, a primary care physician, describing the personal impact on her of patient deaths as she completes death certificates of persons who died due to COVID-19, in My ‘postmortem’ folder and the intensely personal nature of the latest Covid-19 surge, STAT, May 12, 2021, https://tinyurl.com/PostmortemFolder