This page has quotes from the 2023 Dignity Digest issues, beginning in July, ordered by newest first.
December 19, 2023
[Renaming the Massachusetts Rehabilitation Commission as MassAbility] is “great idea” to use more inclusive language for people with different abilities, including those with visible and hidden disabilities.
State Senator Liz Miranda commenting about H 4161 (An Act to rename the Massachusetts Rehabilitation Commission, MassAbility), Healey’s Agency Rebrand Plan Draws No Testimony, State House News, December 11, 2023
State health inspectors have determined that conditions in the Hathorne Hill nursing home [in Danvers, MA] constitute “immediate jeopardy” to the health and safety of residents.
Nursing Home Residents in ‘Immediate Jeopardy’, *Salem News, December 13, 2023
The largest skilled nursing facility in St. Louis has closed suddenly, forcing about 170 residents to be bused to other care centers. Many left with nothing but the clothes they were wearing.
Largest nursing home in St. Louis closes suddenly, forcing out 170 residents, AP News, December 18, 2023 (updated)
The [new Veterans Home at Chelsea] fosters a more nurturing and dignified living environment than other nursing homes by prioritizing individual privacy and autonomy while cultivating a sense of community through shared living spaces and support areas.
Healey-Driscoll Administration, VA Secretary McDonough, Senator Warren Unveil New Cutting-Edge Veterans Home in Chelsea, Office of the Governor, December 8, 2023
The new Office of the Veteran Advocate “was created to ensure that veterans across Massachusetts have another voice in state government, and I know that they will be able to rely on Colonel Notch to connect them to the right resources.”
Governor Maura Healey, Governor Healey, Attorney General Campbell, Auditor DiZoglio Appoint Colonel Robert Notch as Veteran Advocate, Office of the Governor, November 14, 2023
“These are young people that have been spending more time with their doctors than with their friends. They would describe their breakfast as a handful of pills that they are just shoving in.”
Fabian Müller, an oncologist at the Friedrich–Alexander University of Erlangen–Nuremberg in Germany commenting on the benefits of CAR-T therapies, It’s all gone’: CAR-T therapy forces autoimmune diseases into remission, Nature, December 12, 2023
Though its use is still relatively uncommon, the expansion of physician-assisted death as an end-of-life option has brought relief to some families and heightened concern among others.
How medical aid in dying is bringing autonomy to end-of-life decisions, 1A NPR (radio broadcast), December 13, 2023
“[Revenue shortfalls] are cyclical. We’re dealing with inflation and some real challenges out there right now, but I’m confident that we can weather this and weather it well here in Massachusetts.”
Gov. Maura Healey, Healey Shrugs Off Midyear Spending Cuts (State House News, December 13, 2023)
It is not mere coincidence that, over the past decade, the percentage of primary care physicians employed by a hospital-based health system or corporate entity has increased from 36 percent to 74 percent, while MA coverage of Medicare beneficiaries increased from 27 percent to nearly 50 percent. The trend toward corporatizing primary care is unmistakable.
Explaining Corporate America’s Aggressive Investment in Primary Care(*Health Affairs, April 5, 2023)
[P]rimary care physicians should be empowered to dedicate time to thinking, building trusted relationships with patients, and overseeing patient care beyond the four walls of an examination room. Accountability must be designed into high-quality primary care delivery based on results, not process. We think this is eminently doable but, if CMS doesn’t put its mind to it, and doesn’t embrace new thinking, we will never know.
Explaining Corporate America’s Aggressive Investment in Primary Care(*Health Affairs, April 5, 2023)
When you listen to an elder’s story, not just with your ears, but with your heart, they can experience your true self. This in turn allows you to become the best version of yourself with that person, but also with others.
Sandy Alissa Novack, When You Listen with Your Heart, Generations (American Society on Aging), December 14, 2023
“It’s not that I didn’t know about the tax, but in my head I didn’t calculate it. I’m always surprised at the end of the year by how much tax I owe.”
Jennie Phipps, aged 72, a semiretired writer and editor who lives in Punta Gorda, Fla., A Shock for Many Retirees: Social Security Benefits Can Be Taxed, *New York Times, December 17, 2023 (updated)
Overall, the researchers [about smoking] wrote that “while the future looks promising for younger populations,” the situation for older adults is “concerning, since most smoking-related deaths occur at older ages.”
Fewer young adults smoke today than in 2011. That’s not true of seniors., *Washington Post, December 18, 2023
The clock is ticking, and the stakes are high. Congress must act swiftly to safeguard patient access to physician care and secure the future of our health care system, ensuring that our seniors receive the quality health care they deserve.
Richard T. Moore, Proposed Medicare cuts could hit rural seniors hard, *Worcester Telegram & Gazette, December 17, 2023
“When I have the opportunity, I remind people that they have to be prepared as a family—this is a team effort. You can’t take care of Mom or Dad on your own. It’s not fair to anybody.”
Actor Hector Elizondo, whose mother and aunts had Alzheimer’s Disease, Actor Hector Elizondo Encourages Caregivers to Ask For Help, Brain & Life, December 2023
“The[nursing home] industry should welcome these reforms. Just this year, MACPAC issued a report stating that the use of related parties made determining the actual care costs impossible. Increased transparency and accountability could help facilities allegedly struggling to cover costs demonstrate the need for increased funding.”
Sam Brooks, director of public policy for The National Consumer Voice for Quality Long Term Care, Bill calls for consolidated cost reporting by related nursing home businesses, McKnight’s Long-Term Care News, December 18, 2023
“When someone owns a home but not the land beneath them, they’re always at risk of losing their home. . .Our goal is to keep lot rents low for the people who live there.”
Katie McQuaid, vice president of external relations at the Community Loan Fund, ‘Mini democracies’ and affordable N.H. home ownership, *Boston Globe, November 30, 2023 (updated)
“Our proposed rule on fake reviews shows that we’re using all available means to attack deceptive advertising in the digital age. The rule would trigger civil penalties for violators and should help level the playing field for honest companies.”
Samuel Levine, director of the FTC Bureau of Consumer Protection, commenting about proposed regulations that would crack down on providing incentives that are contingent on leaving either positive or negative reviews, Nursing home thrust into controversy after dangling KitchenAid prize for 5-star reviews, McKnight’s Long-Term Care News, December 14, 2023
Federal housing policy in the decades since the failure of Operation Breakthrough has focused myopically on providing financial aid to renters and homeowners. The government needs to return its attention to the supply side. Opening land for development, for example by easing zoning restrictions, is part of the answer, but reducing building costs could be even more constructive. Land accounts for roughly 20 percent of the price of a new house; building costs account for 60 percent.
Why Do We Build Houses in the Same Way That We Did 125 Years Ago?, *Washington Post, December 18, 2023
I once felt the need to strive for perfection, but at the top of that mountain, my imperfect body showed me that it was more than enough. As the cool mountaintop air whistled by, I saw beauty in all I could do, instead of punishing myself for what I couldn’t.
Lindsay Karp, My MS diagnosis freed me to finally love my body as it is, *The Washington Post, December 17, 2023
“People with disabilities socialize with friends, go out to dinner, drink alcohol, wear clothing, and buy shoes. If you are creating advertising for restaurants or beverages or fashion and you are not using disabled talent in your shoots, you are missing out on something critical. C-suite executives talk constantly about the importance of diversity, equity, and inclusion within their organization. Well, it also needs to be part of their messaging. Because I truly believe the impact it can make could change the way we see each other and could ultimately change the world.”
Kristie Raymond, owner of the Clinton-based casting and talent management company HumanKind, A model of inclusion on the runway, *Boston Globe, December 15, 2023
December 12, 2023
COVID-19 was not just a disruption for nursing home staff and residents; it stands as a catastrophe that devastated occupants of long-term care facilities like nothing in recent history ever has. As of December 2020, out of approximately 270,000 COVID deaths, nursing home residents and staff comprised 106,000 such casualties—and as of mid-2021, 40 percent of all US COVID deaths have been linked to long-term care facilities
Nursing Home Social Work During the COVID-19 Pandemic: Reflections Behind the Mask, Reflections: Narratives of Professional Helping, November 29, 2023
A significant treatment gap exists for individuals living with mental health and substance use conditions. As of 2023, 55% of adults who experienced some form of mental illness receive no treatment and 60% of youth with major depression go without help
Strengthening the Integrated Care Workforce, Bipartisan Policy Center, December 4, 2023
“If it’s not unethical, it definitely borders on being unethical. If you’re not able to generate five-star reviews based on your performance, the fact that you have to provide an incentive says a lot, and a lot that’s not positive. The question is, how much is good care for your loved one worth — $480?”
Paul Lanzikos, commenting on Nursing home offers prize for 5-star review, Salem News, December 11, 2023
“We need to professionalize services. We need to give respect and dignity to the workers who provide the care.”
Judi Fonsh, MSW, State proposal would increase spending for the elderly through FY2025, increase salaries, Worcester Telegram, December 3, 2023
“I realized at end of the day that all of us are workers, no matter how elite we’re perceived to be. We’re seen as cogs in the wheel. You can be a physician or a factory worker, and you’re treated exactly the same way by these large corporations.”
Dr. Alia Sharif, who is involved in the union campaign at Allina Health Care, Why Doctors and Pharmacists Are in Revolt, *New York Times, December 5, 2023 (updated)
“I’ve been asking and asking and asking for improvements for years. Now we’re not asking any more — we’re demanding it.”
Dr. Ed Smith, a frontline CVS pharmacist in Massachusetts who previously was a district manager, Why Doctors and Pharmacists Are in Revolt, *New York Times, December 5, 2023 (updated)
The [Massachusetts health care] system is treating fewer people than it would like to, largely because there is less capacity at nursing homes and rehabilitation facilities that would normally take discharged patients recovering from hospitalization.
Mass General Brigham reports strong year, but headwinds foreboding for the market , *Boston Globe, December 8. 2023
“When it comes to our nation’s hospitals, a business model that prioritizes profits over patient care and safety is unacceptable.”
U.S. Senator Chuck Grassley (R-Iowa), Senators probe private equity hospital, transactions, Becker’s Hospital CFO Report, December 7, 2023
“Don’t just point to programs helping other people and say cut those.”
Verna Orvis, 61 year old resident of Chickasaw County, Iowa, A harvest of memories, *Washington Post, December 9, 2023
“I do feel like we are at an inflection point of this health care reform journey and that there needs to be action to update the tools and levers in order for us to maintain our position as a national leader.”
David Seltz, executive director of the Massachusetts Health Policy Commission, A race to keep Mass. health care affordable, CodCast (Pod cast), December 10, 2023
December 5, 2023
The US population 65 and over soared by 34 percent in the last decade, from 43 million in 2012 to 58 million in 2022. In the coming decade, the fastest growth will occur among those over 80, when people are more likely to need accessible housing as well as services and supports at home. The US, however, is not ready to provide housing and care for this surging population.
Housing America’s Older Adults 2023 report, Harvard Joint Center for Housing Studies, November 30, 2023
“[Former State Senator Susan Tucker] was truly a tireless advocate for the underdog, for people that didn’t have a voice. She was someone that just really stood on her principles. There are not many elected officials today that do that.”
State Sen. Barry Finegold, who succeeded Sen. Tucker, Former State Sen. Susan Tucker, The Eagle-Tribune, November 21, 2023
“Heart failure services and care pathways have not been designed for adult congenital heart disease patients, and the adult congenital heart disease services and pathways haven’t been designed for heart failure patients. So where does the adult congenital heart failure patient currently land? They don’t land. They fall between the cracks.”
Dr. Luke Burchill, cardiologist at the Mayo Clinic specializing in congenital heart disease, People with congenital heart disease are living longer — but facing new threat of heart failure (STAT News, December 1, 2023)
The United States has no coherent system of long-term care, mostly a patchwork. The private market, where a minuscule portion of families buy long-term care insurance, has shriveled, reduced over years of giant rate hikes by insurers that had underestimated how much care people would actually use. Labor shortages have left families searching for workers willing to care for their elders in the home. And the cost of a spot in an assisted living facility has soared to an unaffordable level for most middle-class Americans. They have to run out of money to qualify for nursing home care paid for by the government.
Facing Financial Ruin as Costs Soar for Elder Care, KFF Health News, November 14, 2023
“[The cost of elder care] is an issue that’s coming to the front door of members of Congress. No matter where you’re representing — if you’re representing a blue state or red state — families are not going to settle for just having one option,” referring to nursing homes funded under Medicaid. “The federal government has got to do its part, which it hasn’t.”
Sen. Bob Casey, (D-PA), chair of the Senate Special Committee on Aging, Facing Financial Ruin as Costs Soar for Elder Care (KFF Health News, November 14, 2023)
“Residents deserve the best of care from highly trained, fairly compensated, and sufficiently numbered staff. We therefore strongly urge you to quickly strengthen and finalize” the proposal.
Reps. Lloyd Doggett (D-Texas), Jan Schakowsky (D-Ill.) and 99 other House Democrats, , Biden’s nursing home staffing rules divide Democrats ahead of 2024, The Hill, November 22, 2023
“Our nation’s 1.2 million nursing home residents deserve high quality care that prioritizes their safety. The proposed rule takes a vital step towards ensuring residents receive this high-quality care by establishing commonsense staffing minimums and improving enforcement. We urge CMS to provide for strong enforcement of a final staffing standard while ensuring state survey agencies and their staffs are adequately resourced to conduct this important work.”
Sen. Bob Casey (D-Pa.) in a letter with 11 other Senate Democrats, Biden’s nursing home staffing rules divide Democrats ahead of 2024, The Hill, November 22, 2023
“We support the objectives this rule sets out to accomplish and we believe that finalizing and fully enforcing it will be an important first step towards substantially improving care in nursing homes across the country,”
Service Employees International Union, which represents more than 1 million healthcare workers, in a Nov. 3 comment letter, Nursing home staffing rule finds scant political support , *Modern Healthcare, December 4, 2023
“It’s way past time to have real, strong standards that will make sure that residents get quality care that they’re entitled to get.”
Toby Edelman, senior policy attorney, The Center for Medicare Advocacy, Nursing home staffing rule finds scant political support , *Modern Healthcare, December 4, 2023
Analysis of in-custody deaths show mortality rates were more than three times the increase in general population in 2020.
US prison deaths soared by 77% during height of Covid-19 crisis, study finds (The Guardian, December 3, 2023)
[T]he poverty rate among those age 65 and over was 10.9%, 1.6 percentage points lower than the overall rate. . . In metro areas, older population poverty rates ranged from 3.4% to 25.7%. In 2022, most of the nation’s 63 metro areas with older population poverty rates of 13.0% or higher were in the South (42) or the West (14). More than a quarter of all the South’s metro areas fell into the two highest poverty categories compared to just 3.2% of those in the Midwest. Poverty rates among those age 65-plus rose in 44 metro areas and fell in 11 metros from 2021 to 2022.
Child Poverty Rate Still Higher Than for Older Populations but Declining, (U. S. Census Bureau, December 4, 2023)
The key is getting [hospital] boards to act in service of the mission. They need greater accountability. And that’s where lawmakers and policymakers can help, by finding ways to encourage or require boards to resist the growth interests common to organizations. Hospital systems, like living organisms, tend to put survival and proliferation above all else.
Why Are Nonprofit Hospitals Focused More on Dollars Than Patients? , *New York Times, November 30, 2023
November 28, 2023
The recent arrival of thousands of immigrants has put an unprecedented strain on the emergency shelter system. But make no mistake — that system was broken to begin with. And not by accident, but by design: To avoid precisely the kind of overload our shelters are seeing right now, the system has long been set up to make sure not everyone who needs help gets it.
That is a choice, not an act of nature. And we can choose to change it.
For some families, the right to shelter isn’t a right at all (*Boston Globe, November 25, 2023 (updated))
“Staffing shortages, high employee turnover, a rise in the use of temporary staffing agencies, a shortage of inspectors, and a backlog of complaint investigations have all impacted care [in nursing homes].
Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, Tennessee sees spike in nursing homes battling serious problems since COVID-19 pandemic, *The Tennessean, November 26, 2023
“[Personnel from temporary staffing agencies] didn’t know what they were supposed to be doing. We’ve had several residents say they don’t want (the staff) even touching them because they don’t know how to turn them properly. They don’t know how to work the equipment.”
Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care, Tennessee sees spike in nursing homes battling serious problems since COVID-19 pandemic, The Tennessean, November 26, 2023
“Every doll tells a story and every doll represents somebody, who has been through an incredible journey. For most of the kids, they will never see another kid that looks like they do, let alone a toy.”
Amy Jandrisevits, the founder of A Doll Like Me, More Than Just a Toy Company: The Powerful Representation Message Behind A Doll Like Me — Exclusive, Nice News, September 8, 2022
“When I am with others who have a hearing loss or who are deaf as well — it allows me to forget that there is something different about me and I can just be me. I hope to create this kind of environment for the girls, where they can forget that they have something different than everyone else and they can just be themselves.”
Alexis “Lexi” Marman, who is deaf and a co-leader of Girl Scout Troop 8542 whose members are deaf or hard-of-hearing, California Girl Scout Troop Brings Members of the Deaf Community Together, Nice News, November 25, 2023
In December 2022, 4 in 10 adults with disabilities (40 percent) reported experiencing unfair treatment in health care settings, at work, or when applying for public benefits because of their disabilities or other personal characteristics in the previous year. Adults with disabilities were more than twice as likely as adults without disabilities to report unfair treatment in one or more of these settings (40 percent versus 18 percent).
Four in Ten Adults with Disabilities Experienced Unfair Care Settings, at Work, or When Applying for Public Benefits in 2022 (Urban Institute, October 11, 2023)
“I love my friends who are the same age as me, but I adore meeting and knowing people of all ages. It keeps me more engaged with the world. It makes me feel part of a real community, a larger family.”
Robyn Ringler, who is 66 and has opted not to move to an age-restricted housing complex, When the Neighbors Are All Older, Too (New York Times (free access), November 25, 2023
“Nursing home residents who had COVID-19 experienced new decline in their function and needed substantially more help with daily activities after their acute infection period, lasting for months. This places an even greater burden on nursing home staff, who are already stretched thin.”
Lona Mody, MD, interim chief of geriatrics and palliative medicine at UM Medical School, Long COVID patients demand 9 months of ADL support from nursing home staff, McKnights Long Term-Care News, November 27, 2023
“We recognize how important it is to support the independence of customers with disabilities by ensuring the proper care of mobility devices throughout their journey with us.”
American Airlines’ statement referencing wheelchair incident, Buttigieg promises to investigate wheelchair incident from viral video, *Washington Post, November 22, 2023
“I think a lot of people think compliance with the building code is compliance with the fair housing laws Many are surprised by the additional requirements under the fair housing laws.” A number of laws give people with disabilities a right to equal housing — like the Americans with Disabilities Act, the federal Fair Housing Act, the New York State Human Rights Law, and the New York City Human Rights Law.
Cori Rosen, a lawyer at Rosenberg & Estis, The Cost of Being Disabled in New York City Housing, *New York Times, October 31, 2023
She lucked out when an acquaintance told her about the Nursing Home Transition and Diversion waiver program, which provides housing vouchers to people with disabilities who are transitioning out of nursing homes, allowing her to stay in the apartment at an even lower out-of-pocket cost. But when she wanted to move to a larger space, she said it was difficult to find another accessible apartment that accepted vouchers, so she stayed.
The Cost of Being Disabled in New York City Housing, *New York Times, October 31, 2023
“People with vision disabilities held in jails and prisons should not be subjected to a higher risk of harm or exposed to greater restrictions than their sighted peers. They should not be denied trained aides, or accessible technology and materials that allow them to participate in work, education, and recreation programs.”
Assistant Attorney General Kristen Clarke of the U. S. Justice Department’s Civil Rights Division, Justice Department Secures Agreement with Arizona Prison System Resolving Discrimination Against Incarcerated People with Vision Disabilities, U. S. Department of Justice, November 16, 2023
“There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”
Former First Lady Rosalynn Carter, Supporting Family Caregivers: A Key Issue for ACL and for Our Time, Administration on Community Living, November 20, 2023
Union Home Health Care Services, LLC, [Worcester, MA] allegedly received more than $1.6 million from MassHealth for services not rendered, not medically authorized, and based on fraudulent documentation.
Worcester-Based Home Care Company and Its Managers Indicted For $1.6 Million Medicaid Fraud Scheme, Office of the Attorney General, November 17, 2023
November 21, 2023
The details [ of H 4178 “An Act to improve quality and oversight of long-term care”] are complicated, and lawmakers and interest groups should scrutinize them as the legislation advances. But before this session ends in 2024, Governor Maura Healey should sign into law a version of this bill, which strengthens accountability and oversight while giving nursing homes the resources they need to ensure residents are getting the highest quality of care.
Holding nursing homes accountable, while paying them fairly, *Boston Globe, November 18, 2023 (updated)
There’s a lot more that could and should be done to improve conditions in nursing homes, not the least of which is aggressive enforcement to protect residents and staff. Even if the Healey-Driscoll Administration resolves to substantially improve the quality and safety of nursing homes, Massachusetts should still strive to be a national leader in home and community-based supports and services! After all, if older adults don’t have to go into a nursing home, fewer people will suffer from the failures of the nursing home industry here and across the nation!
Richard Moore, Chair, DignityMA Legislative Workgroup, Commentary to Boston Globe editorial, Holding nursing homes accountable, while paying them fairly, *Boston Globe, November 18, 2023
“I wanted to take mental illnesses and emotional disorders out of the closet, to let people know it is all right to admit having a problem without the fear of being called crazy. If only we could consider mental illnesses as straightforwardly as we do physical illnesses, those affected could seek help and be treated in an open and effective way.”
Rosalynn Carter from her autobiography, Rosalynn Carter, first lady who championed mental health, dies at 96, Washington Post (free access), November 19, 2023
I’d pay to sit behind her, blind to what
was on the screen, and watch the image flicker
upon her hair.
I’d glow when her diminished voice would clear
my muddled thoughts, like lightning flashing in
a gloomy sky.
Poem by Jimmy Carter about Rosalynn Carter, The Formidable Rosalynn Carter, *New York Times, November 20, 2023
“We still receive many complaints about staffing shortages and services not being provided as promised. Some residents have reported to us they called 911 for things like getting in and out of bed.”
Aisha A. Elmquist, until recently the deputy ombudsman for long-term care in Minnesota, a state-funded advocate, Extra Fees Drive Assisted-Living Profits, New York Times (free access), November 19, 2023
“The opioid epidemic, mental health, and chronic metabolic disease are certainly front and center in the data that we see here, explaining why there’s this widening life expectancy gap by gender, as well as the overall drop in life expectancy. Men have higher mortality rates from all three conditions compared to women. In addition, a lot of these drivers of worsening life expectancy in particular for men are preventable causes of death.”
Brandon Yan, a resident physician at the UCSF School of Medicine and a research collaborator at the Harvard T.H. Chan School of Public Health, Extra Fees Drive Assisted-Living Profits, New York Times (free access), November 19, 2023
“For the MIAA [Massachusetts Interscholastic Athletic Association], whose entire mission is to support high school athletics because of their importance in the educational experience, to come out with a ruling like this is unconscionable. It reeks of disability discrimination by a group that I know does not intend that.”
Archbishop Williams High School president Dennis Duggan, Parents of students with disabilities say MIAA’s crackdown on sports eligibility is unfair to them, *Boston Globe, November 17, 2023 (updated)
Shame on the MIAA! This looks to me like a clear violation of the American with Disabilities Act. Sounds like both these boys have a disability diagnosed through a neuro-psych evaluation. They weren’t academically able to enter a mainstream ninth grade without a remedial year at Carroll. If neither played high school sports at Carroll, then they’ve only played three years of high school sports. That’s pretty simple math. People, and especially kids, with disabilities, deserve the same opportunity as their peers. What a disgrace and violation of the law.
Clover789 (a Boston Globe reader) providing commentary, Parents of students with disabilities say MIAA’s crackdown on sports eligibility is unfair to them, *Boston Globe, November 17, 2023 (updated)
“You don’t want to be locked in for the rest of your life, you don’t want to live the rhythm of the organization. You want to make your own choices. You still want to go on living, but you need support.”
Jannette Spiering, a founder of the Hogeweyk [dementia community], As Cases Soar, ‘Dementia Villages’ Look Like the Future of Home Care, New York Times (free access), July 3, 2023
“The real challenge is a major cultural shift. It is not a challenge, actually, to create something like this [i.e., dementia community. The more challenging thing is to create a society where people are really included, whatever label or diagnosis they have.”
Jannette Spiering,, As Cases Soar, ‘Dementia Villages’ Look Like the Future of Home Care, New York Times (free access), July 3, 2023
“People want to remain at home, they want to live in the community. I think this is an important message. So even if we think in terms of dementia villages, how close they are to the community — that’s very important. They should be part of the community, rather than outside of it.”
Dr. Tarun Dua, who heads the Brain Health unit at the W.H.O.’s Department of Mental Health and Substance Use, As Cases Soar, ‘Dementia Villages’ Look Like the Future of Home Care, New York Times (free access), July 3, 2023
Around the world, wealthy countries are struggling to afford long-term care for rapidly aging populations. Most spend more than the United States through government funding or insurance that individuals are legally required to obtain. Some protect individuals from exhausting all their income or wealth paying for long-term care.
What Long-Term Care Looks Like Around the World. New York Times (free access), November 14, 2023
November 14, 2023
“Health care is not just about numbers and statistics — it’s about real, every day experiences of the people we serve. It’s about ensuring that individuals and families, regardless of their background, have access to the health care and insurance they need.”
Martine Chanel, field director for Health Care For All’s Boston MassHealth redetermination canvassing team, Canvassers Reaching Thousands Amid Health Insurance Churn, State House News, November 6, 2023
“We don’t want to see this become a situation where people with severe mental illness are segregated to just this facility.”
Kaili Kuiper, Vermont’s long-term care ombudsman, Bennington nursing home to be sold to company promising specialized care, vtdigger, November 10, 2023
“[C]reating more institutions in Vermont are not something we should be proud of nor holding out as our first priority.”
Lindsey Owen, the executive director of Disability Rights Vermont, Bennington nursing home to be sold to company promising specialized care, vtdigger, November 10, 2023
“We should be both providing affordable housing and keeping whatever stock we already have – in fact, we should be growing it. But we also need to keep – I’m assuming in their case – care at our hospitals. Because we can’t have hospitals closing down, either.”
Kim Fitzgerald, CEO of Cathedral Square, an affordable housing provider for older residents in northwest Vermont, Competing needs: Copley Hospital seeks to convert senior apartments to worker housing, vtdigger, November 10, 2023
I realize today that if I gave any gift at all to medicine, it was not in cures for patients. I was no super doc miracle worker. No, my gift was in facing the end of life, facing reality, which meant using the words death, die and dying, and doing what I could do — comfort, relieve pain and be present at the end.
Dr. Michael S. Smith, Eugene, Ore., Tough Decisions About Dementia and End-of-Life Care (New York Times (free access), November 11, 2023)
[S]tiff sanctions should be imposed more, so that there’s a “meaningful ladder of sufficient penalties to ensure that facilities are properly motivated to take steps to ensure resident safety. To pussyfoot around resident neglect or abuse is essentially encouraging. It’s allowing it to happen.”
Richard Mollot, executive director of the Long Term Care Community Coalition, Maine Rarely Sanctions Residential Care Facilities Even After Severe Abuse or Neglect Incidents, ProPublica, November 12, 2023
“The goal of offering Comprehensive Care at Home is to offer a convenient alternative for patients who can safely receive care at home. In addition, this care option frees up hospital capacity for those patients who truly need inpatient care. Care that can be done at home includes labs, diagnostic imaging, supplemental oxygen, wound care, respiratory treatments, IV diuretics, antibiotics, and fluids. Being able to offer all these services in the patient’s home is truly a win-win.
Ahmed Abuabdou, M.D., UAMS Health Chief Clinical Officer, UAMS Comprehensive Care at Home Provides ‘Pleasant Hospitalization’ for Veteran, UAMS News, November 11, 2023
“I could not live without them. The whole reason I’m staying in Massachusetts is because we have this team.”
Jennifer DerBogosian, mother of Julian DerBogosian, age 20, who has cerebral palsy and is nonverbal, unable to walk, and has hips so stiff it’s impossible for him to sit, commenting about the Assistive Technology Center team in Danvers, MA, Meet the Massachusetts ‘MacGyvers’ customizing equipment for people with disabilities ,*Boston Globe, November 11, 2023
To advance equity in aging, laws and policies must address not only the structural ageism embedded in our systems, but also the other types of discrimination that intersect with age and compound harmful inequities.
Fulfilling the Promise of Equity for Older Adults: Opportunities in Law and Policy, Justice in Aging, October 2023
Massachusetts ranks highly among states on measures of health care quality. The Commonwealth Fund Scorecard ranked Massachusetts as the top state in the nation in a number of metrics including healthy lives and prevention and treatment. However, it ranked Massachusetts 44th (i.e., 7th worst) on the measure of “avoidable use and cost” — a particularly striking finding in the context of Massachusetts having the third-highest health care spending among states in the U.S. as of 2020, at 31 percent above the U.S. average.
2023 Annual Health Care Cost Trends Report and Policy Recommendations, Massachusetts Health Policy Commission, September 2023
Through its investigation, the [U. S. Department of Justice] concluded that it had reasonable cause to believe Alameda County [California] violated the ADA by unnecessarily institutionalizing people with mental health disabilities who could otherwise avoid institutionalization – as well as incarceration – with access to appropriate community-based services. The settlement agreement will help ensure that individuals with mental health disabilities have access to needed community-based services and supports.
Justice Department Reaches Agreement with Alameda County, CA to Improve Mental Health Services, U. S. Department of Justice, November 7, 2023
In Massachusetts, you can hire any friend or relative to be your personal care attendant except your spouse — who knows you best.
Spouses ought to be paid for care, Daily Hampshire Gazette, November 6, 2023
Getting older is almost like changing species, from cute middle-aged, white-tailed deer, to yak. We are both grass eaters, but that’s about the only similarity.
Anne Lamott, an American novelist and nonfiction writer, It’s good to remember: We are all on borrowed time, *Washington Post, October 30, 2023
People with disabilities had a 20 percent likelihood of having difficulties voting in-person, compared to 6 percent for people without a disability. With a mail-in ballot, the likelihood of difficulties voting for people with disabilities was 6 percent, compared with 1 percent of people without disabilities.
‘There is still work to be done’: Voters with disabilities face unaddressed barriers to the ballot, The 19th, November 9, 2023
“It sounds cheesy, I know, but voting is so crucial — especially for people with disabilities — if we want to see change, because of the power our vote has. But while conversations and policy need to include us, at the same time I understand voter apathy because every day it feels like we don’t matter.”
Ola Ojewumi, founder of global education nonprofit organization Project Ascend, ‘There is still work to be done’: Voters with disabilities face unaddressed barriers to the ballot, The 19th, November 9, 2023
“Voting is important, but also is living and surviving. Most disabled people in this country struggle to do that. Disabled people are tired of just being brought up during elections because of what our numbers could do. Or as a gimmick. When we think about voting, when we think about who has access to vote, we don’t think about disabled people. As members of society, let alone members of a constituency.”
Imani Barbarin, a disability advocate and communications professional whose work includes hosting Vote for Access, a five-part YouTube series examining the problems with voting for people with disabilities, ‘There is still work to be done’: Voters with disabilities face unaddressed barriers to the ballot, The 19th, November 9, 2023
“[Nursing home quality] is not an issue that people want to address. We need to begin to talk about these issues. We’re all going to get old, and we’re all going to die. And that’s the reality. We’re going to go into this cohort in a much larger group than our parents, so we need to get young people involved in wanting to care. Who wants to be in a nursing home? Is it fair? People live long, productive lives. Can’t we find a way to keep them in the community?”
Angela Mattie, a professor in both Quinnipiac University’s Schools of Business and Medicine, Americans give nursing homes a D+ grade for quality of care, new poll shows, The 19th, September 12, 2023
“Most people want to be home, right? They want to be in their community if that’s a possibility. As we think about longer term care, we should break down the siloes of how we think about things. Deployment of dollars within the state and federal government should be put towards interventions that can lower the need for nursing homes in the first place.”
Tim Lash, the president of West Health, a nonprofit medical research organization, Americans give nursing homes a D+ grade for quality of care, new poll shows , The 19th, September 12, 2023
Despite making up more than half of the population, women have been understudied and underrepresented in health research for far too long. Research on women’s health is drastically underfunded, leading to significant research gaps, with serious consequences for the health of women across the country. This lack of investment limits our understanding of conditions that are specific to women, predominantly affect women, or affect women differently. In order to give women and their health care providers the tools and information that they need to more effectively prevent, diagnose, and treat these conditions – from rheumatoid arthritis to menopause to Alzheimer’s disease to cardiovascular disease to endometriosis – our nation must fundamentally change how we approach and fund women’s health research.
President Joe Biden to Announce First-Ever White House Initiative on Women’s Health Research, An Effort Led by First Lady Jill Biden and the White House Gender Policy Council, The White House, November 13, 2023,
Senate Will Press for Prescription Drug Cost Relief ,State House News, November 9, 2023
November 7, 2023
How we treat our children, parents, and loved ones and how we value those who care for them are fundamental to who we are as a Nation. . . No one should have to choose between the parents who raised them, the loved ones who depend on them, or the paycheck they rely on to care for their families. . . Let us celebrate and honor our caregivers and renew our efforts to protect their dignity, health, and security. Because when we care for our caregivers, we honor our American ideals and move closer to a future where no one in this Nation is left behind.
President Jospeh Biden, A Proclamation on National Family Caregivers Month, 2023, The White House, October 31, 2023)
The governor’s legislation [to rename the Massachusetts Rehabilitation Commission to “MassAbility” would also remove from statute the words “handicap,” “handicapped” and “retarded,” according to Healey’s filing letter. Those would be replaced with “barrier,” “person with a disability” and “person with intellectual disabilities.”
A Workhorse Affordable Housing Program Is Expanding Significantly, Banker & Tradesman, October 30, 2023
Getting old doesn’t stink. Getting sick because you got old is what stinks. When I turned 65 eight years ago, my new hobby became going to the doctor.
Dave Stone, Springfield, Oregon, Growing Old, for Better or Worse(New York Times (free access), October 21, 2023
In the longevity world, time is a fungible concept. Aging is something to be battled and slain. A burgeoning apothecary of serums and humectants is marketed as “anti-aging,” whatever that is. Longevity coaches promote programs capable of “reversing aging.”
‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
But living to 100, even 120, may not equal a better life, especially if a fitter body isn’t accompanied by agency, hope or sharp cognition. There are ethical concerns as to whether it’s responsible to desire a century of life in a time of climate crisis, an expanding global population and an epidemic of loneliness, particularly if our partners and peers may not be there to share it. To some critics, the financial and time investments in a longer life — or, more precisely, the hope of a longer life — suggest an extended exercise in narcissism, so many more years of Me Time.
‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
“The reality is that you’re adding time at the end of your life. You’re not getting two decades of being in your 20s. We’re really bad judges of our abilities and our own limitations. . . This manic desperation to endlessly extend life is misguided and potentially destructive. . . This obsession with physical activity now for maybe an increased chance later on that you’re going to be more physically fit is questionable. There are no guarantees. You could come down with a cancer, Parkinson’s disease or multiple sclerosis or Lord knows what.”
Ezekiel J. Emanuel, an oncologist and the vice provost for global initiatives at the University of Pennsylvania., ‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
This raises the issue of who will look after the super old if the best-supplemented and diet-restricted plans don’t result in glorious health. The United States has a national shortage of caregivers, who are routinely underpaid and undervalued.
‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
Many longevity authorities eschew alcohol and view sugar as abominable, dairy as problematic and bread as verboten. Everyone advocates better sleep. Attia suggests sleeping in a room cooled to around 65 degrees. A highly regimented life can make pleasure seem like an afterthought — unless your idea of pleasure is a highly regimented life and rigorous exercise. Routine fasts and a strict diet can be buzz kills to someone’s social life. The key to being healthier needn’t be complicated or expensive. It comes down to five words: “Exercise more and eat less.” Then again, [S. Jay Olshansky, 69, an authority on aging at the University of Illinois at Chicago] noted, “you could be coached on all of that and still die at the same age.”
‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
“A 150-year life is still a mortal life. The pursuit of longevity can go awry if it is, in effect, a denial, an unwillingness to face the fact of mortality, to wrestle with its implications of how we can and ought to live. . . All things being equal, it is good for people to live longer, to be healthier for longer. If that becomes our highest goal, then I think we might be selling ourselves short. We would extend our lives without deepening it.”
Ryan McAnnally-Linz, 39, associate director of the Yale Center for Faith & Culture who co-wrote the best-selling “Life Worth Living: A Guide to What Matters Most,” named for the popular Yale course that he teaches, ‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
“If you somehow end up living to 85, fully physically functioning and mentally functioning, that’s great, too. But that’s not the goal. The goal isn’t to live a long time. The goal is to live a meaningful life.”
Ezekiel J. Emanuel, University of Pennsylvania., ‘Aging is a disease’: Inside the drive to postpone death indefinitely, The Washington Post (free access), November 6, 2023
“One of the reasons that we’ve tolerated so many broken systems for so long is because I don’t think we have looked at our neighbors experiencing homelessness as our neighbors en masse.”
Kevin Adler, social entrepreneur, “They’re Our Neighbors”: Social Entrepreneur Aims to Shift Public Perception of Homelessness in America — Exclusive, Nice News, November 4, 2023
Throughout the Commonwealth, there are over one million family caregivers who provide daily or frequent care to assist a family member or loved one in maintaining independence and well-being and [a]lmost every resident in the Commonwealth will be a caregiver at some point in their lives as the population ages.
Governor Maura Healey, Governor Healey’s Proclamation of Family Caregiver Month, Office of Governor Maura Healey, November 1, 2023
Adults 60 and older report losses of $1.6 billion in 2022 to scams, investment scams are top reported by dollars lost.
FTC Issues Annual Report to Congress on Agency’s Actions to Protect Older Adults, Federal Trade Commission, October 18, 2023
“[The increase in hospital-generated guardianship requests] should scare people to death. This is a common practice nationwide, and its adoption is growing.”
Rick Black, the founder of the Center for Estate Administration Reform who has examined thousands of guardianship cases and has seen a rise in hospitals initiating them, The retired pilot went to the hospital. Then his life went into a tailspin.The Washington Post (free access), November 4, 2023
“[The guardianship] system trusts a person to be a guardian angel, but people are not.”
Katie Thompson, niece of Douglas Hulse who was a victim of financial abuse by a professional guardian, The retired pilot went to the hospital. Then his life went into a tailspin.The Washington Post (free access), November 4, 2023
“People don’t realize how abusive the [guardianship] system is. If they knew, there would be bigger cries for reform.”
Pinellas County [Florida] Circuit Court Clerk Ken Burke, who led a recent task force to improve guardianships, The retired pilot went to the hospital. Then his life went into a tailspin.The Washington Post (free access), November 4, 2023
“Everyone uses SDM every day. Even all of you sitting here today will be using SDM. It is hard to believe, but everyone uses SDM in their life — friends, family, coworkers, we all have to talk to somebody about something,” “Today, you guys will sit together and decide whether or not to pass this bill. That is SDM; talking to each other, making a decision in your lives. Please pass the supported decision-making bill so that we have that same opportunity as people with disabilities to make decisions in our lives.”
Kim Plaut, a board member of the self-advocacy organization Massachusetts Advocates Standing Strong, SDM Pitched As Needed Alternative to Guardianship, (State House News, October 31, 2023)
“What’s clear here is that Social Security has a severe customer service problem. It’s not only inefficient, it’s awful, it’s inhumane. We have to explain to people who call our office … and with a straight face tell them, by the way, you’re going to be denied, that’s a complete waste of time that begins another lengthy process” of appeals.
Representative Brian Higgins, Democrat of New York. Lawmakers grill Social Security leader over disability system’s failures, *Boston Globe, October 27, 2023
October 31, 2023
“Ensuring that residents of nursing homes in Massachusetts are provided with dignified, high-quality care is critically important, and has long been a priority of the House. Over the next few weeks, the House intends to vote on legislation that seeks to enhance oversight and bring greater accountability to the long-term care industry, as well as improve direct care staff recruitment and retention.”
Speaker of the Massachusetts House of Representatives Ronald Mariano, House, Senate Health Care Priority Bills On The Move, State House News, October 26, 2023
“We want people to be able to have a choice of living in the community versus remaining in institutional care.”
Carolyn Villers, executive director of Massachusetts Senior Action Council, plaintiff organization I the class action lawsuit, David Marsters v. Maura Healey, Help people with disabilities live in the community, *The Boston Globe, October 27, 2023 (updated)
“This [Connecticut] law is aimed at providing transparency that identifies all owners and entities affiliated with the proposed ownership of a nursing home. While it does not specifically say the intent of the law is to discourage private equity ownership of nursing homes, this is almost certainly the case. CMS is highly distrustful of private equity ownership of nursing homes. Laws like this one in Connecticut are likely targeted at ferreting out private equity ownership of nursing homes.”
Attorney Todd J. Selby, Advocates warn of slower sales as nursing home ownership law begins, McKnight’s Long-Term Care News, October 25, 2023
As part of any settlement, the state needs to invest in personal care attendants, home health aides and homemakers from the money that will be saved by emptying nursing home beds that suffer from the inability to retain staff because of poor wages and excessive numbers needing care. Some progress has been made in the recent PCA contract, but more is needed, especially for other community care givers. Allowing spouses to be paid caregivers would be a good step and there’s pending legislation to help move toward that goal. S.67 and H. 216 among the bills to do this and are endorsed by Dignity Alliance and AARP. Most nursing homes are failing to provide staff despite increases in taxpayer funded reimbursements. They are offering safe, high-quality care for those with disabilities or older adults. Not only those with disabilities, who would be aided by a responsible settlement of the Marsters v. Healey case, but the 88% of older adults who want to stay in their homes and communities will benefit and the need will only grow as the state’s population grows to 20% over age 65.
Former State Senator Richard Moore, Chair DignityMA Legislative Workgroup, responding to the Boston Globe editorial, in the comment section of Help people with disabilities live in the community
Overall, one-fourth of nursing home residents use personal savings or long-term care insurance benefits to cover their care, whereas two-thirds rely on Medicaid as their primary payer and 13% rely on Medicare, according to KFF data. The median cost of a semi-private room at a nursing home is approximately $7,908 per month or $94,900 annually.
Rise in nursing home costs ‘drastically’ affects middle class: analysis, McKnight’s Senior Living, October 25, 2023
“Based on manufacturing capacity and currently available stock, there are not sufficient 100-mg dose prefilled syringes of nirsevimab to protect all eligible infants weighing [11 pounds or more] during the current RSV season. Additionally, supply of the 50-mg dose prefilled syringes may be limited during the current RSV season. CDC continues to work with the manufacturer to understand how it may accelerate nirsevimab supply.”
Centers for Disease and Prevention Statement, CDC recommends rationing of RSV shot due to shortages, STAT News, October 24, 2023
One recent study found that last summer’s heat waves killed more than 61,000 people across Europe, most of them women over 80. In Switzerland, more than 60 percent of about 600 heat-related deaths last summer were attributed to global warming, according to a study from the University of Bern, with older women having the highest mortality rate.
Heat Waves Are Killing Older Women. Are They Also Violating Their Rights?, New York Times (free access), August 7, 2023
“We’re stuck in a time warp about what it means to be an older adult. The expectation is that people stop working at 65, and that’s just not the case. There’s a big challenge to change our framework and our perception of what it means to be an older adult.”
Elizabeth White, an author and aging solutions advocate, Workforce equity: Employers stuck in ‘time warp’ about older workers, HRDive, October 20, 2023
“It is a blind spot when people overlook the real attributes that older workers can bring to a workforce, to a business, but when employers believe myths and stereotypes about older workers not wanting to work or being digitally incompetent, it can become ageism. Ageism actually exists, and it’s more than a blind spot. It shows up as prejudice. It shows up in stereotyping, and it results in people actually being pushed out.”
Janine Vanderburg, CEO of Encore Roadmap, Workforce equity: Employers stuck in ‘time warp’ about older workers, HRDive, October 20, 2023
The leading role played by older folks is something the country may have to get accustomed to: A decade from now, according to federal population projections, the United States will be home to more people over 65 than those under 18 — a complete reversal of the current picture.
Older Americans are dominating like never before, but what comes next?, Washington Post (free access), October 24, 2023
“Experience matters, [but] [w]e stay longer in leadership because we’re selfish. I’m sitting here talking to you and there’s no way I should be alive. We’re benefiting from the wonderful private medical system: I had my aortic valve replaced with a bull’s valve. I just had a pacemaker installed this spring. I have two bad knees and I had one repaired. We’re all living longer, 20 years longer than our fathers lived.”
Jack Fitzgerald, age 88, who owns more than a dozen auto dealerships in the District of Columbia–Maryland-Virginia area and South Florida, Older Americans are dominating like never before, but what comes next?, Washington Post (free access), October 24, 2023
“A facility may have a very high star rating, which comes from the Centers for Medicare & Medicaid Services, based on delivery of the clinical aspect of care: Are you providing meds on time? Are you adhering to all these other regulations? That does not translate in all cases to a home-like environment and loving care.”
Margaret Barajas, Pennsylvania’slong-term care ombudsman, Nursing home rating system criticized over reliability, accuracy(Tribune-Review, October 29, 2023)
Around two million grandparents are responsible for the basic needs of their grandchildren, with such caregiving concentrated in historically disadvantaged communities. . .Grandparents often become caregivers to grandchildren after an adult child is no longer available due to death, incarceration, or substance abuse.
“Could Social Security Child Benefits Help Grandparent Caregivers?”, The Center for Retirement Research at Boston College, October 24, 2023
“The defendants involved in these two settlements not only failed to comply with the necessary standards for providing critical services to a vulnerable population with autism spectrum disorder, but also fraudulently exploited public funds.”
Attorney General Andrea Campbell, AG Campbell Announces More Than $2.5 Million In Fraud Settlements With Two Autism Services Providers, Office of the Attorney General, October 27, 2023
“This is simply not going to be solved by putting more resources and money at it. If we don’t have the right policies, we’re defeating ourselves.”
Representative Bill Pascrell Jr., Democrat of New Jersey, addressing the failures of the Social Security system’s disability program, Lawmakers grill Social Security leader over disability system’s failures(*Boston Globe, October 27, 2023)
October 24, 2023
Only 6% of real estate investment trust (REIT) assets are in compliance with the federal minimum staffing proposal for nursing homes, compared to the industry average of 19%.
Only 6% of REIT Nursing Home Assets Meet Proposed Federal Staffing Mandate, Skilled Nursing News, October 20, 2023
“The Affordable Homes Act delivers on this promise by unlocking $4 billion to support the production, preservation and rehabilitation of more than 65,000 homes statewide. It’s the largest housing investment in Massachusetts history. Together, we’re going to make our state a place where people can afford to move to and stay to build their future.”
Governor Maura Healey, Healey Backs Transfer Taxes, Accessory Dwellings In $4.1 Bil Housing Bill, State House News, October 18, 2023
“Nursing home workers have been warning for years that dangerously inadequate staffing levels put them in harm’s way and compromise patient care. On behalf of AFSCME nursing home workers and all AFSCME members, I am grateful for this proposed rule, which takes important steps toward addressing the problem.”
AFSCME President Lee Saunders, AFSCME supports new federal rule that seeks to improve nursing home staffing, AFSCME, October 20, 2023
An estimated 80 percent of veterans will have some need for long-term services and supports in their lifetime. In VA, demand is growing rapidly, driven by an aging veteran population and a growing number of veterans with service-connected disabilities. Vietnam-era veterans are increasingly driving this demand, with most reaching age 75 or older by 2026.
Home and Community-Based Services Veterans’ Issues in Focus, RAND Corporation, 2023
MassHealth pays for 70 percent of the nursing home bills in our state. But before MassHealth agrees to pay your nursing home bill, it wants to know you’re impoverished because Medicaid is a program to help poor people. MassHealth won’t pay a nickel of your nursing home bill unless you can prove that you own nothing more than $2000.00.
Does $2000 matter more than $2 million? Yes, if a nursing home is in your future, The Pilot, October 20, 2023
The challenges [older prisoners] face are becoming increasingly common. Between 1993 and 2013, the number of people 55 or older in state prisons increased by 400 percent. The American Civil Liberties Union estimates that by 2030, people over 55 will constitute a third of the country’s prison population.
Elderly and Imprisoned: ‘I Don’t Count It as Living, Only Existing.’, New York Times (free access), October 21, 2023
Efforts to reduce the aging prison population are driven not solely by compassion but also by the tremendous cost of incarcerating older people. Residents do not qualify for Medicaid, leaving the state responsible for all care expenses. Older residents are more likely to suffer from chronic illnesses like diabetes, dementia, and cancer and to struggle with depression and anxiety.
Elderly and Imprisoned: ‘I Don’t Count It as Living, Only Existing.’, New York Times (free access), October 21, 2023
“Where people who use wheelchairs have little to no bargaining or market power right now, we’re providing a really basic level of consumer protection.”
Senator John Cronin (D – Worcester), sponsor of S. 152, a bill to address slow repairs, Wheelchair repairs can drag out for months. In Mass., people with disabilities seek a solution.*Boston Globe, October 22, 2023 (updated)
“I don’t think that any able-bodied person today would stand for this kind of bungling and red tape.”
Pamela Daly, wheelchair user from Charlestown, Wheelchair repairs can drag out for months. In Mass., people with disabilities seek a solution.*Boston Globe, October 22, 2023 (updated)
If corporate wealth and power are determining factors in who has access to healthcare data and/or who is recognized as legitimate analysts and interpreters of government information, the American people will be sitting ducks for manipulation, and exploitation.
The Nursing Home Industry-Brown University Collaboration: Science or a Sign of Growing Corporate Abuse of Power?, Tallgrass Economics, October 20, 2023
A February 2022 report from the State Comptroller (OSC) found that 15 nursing homes in New Jersey’s Medicaid program performed poorly with no consequences. A March report from this year reveals little has changed.
New Jersey’s Nursing Homes Are a Scandal. Politics is Getting in the Way of Change. The Trentonian, October 22, 2023
The first advocacy step in response [to an eviction notice from an assisted living residence] is simple but vital: the resident must stay strong and not leave.
Federal Medicaid Law and Assisted Living Advocacy: What to Do When a Facility Refuses to Accept Medicaid, or Attempts to Evict Without Offering Appeal Rights (Justice in Aging, October 11, 2023)
October 17, 2023
Excessive heat erodes human health in a staggeringly wide array of ways.
As heat-related deaths rise, a new program puts community clinics on the front lines, Grist, October 10, 2023
But in a moment like this, age, experience, and a willingness to speak uncomfortable truths are vital strengths, both practically and politically. Biden is a wise old man who has seen a lot of things. He can and does speak plainly, even when it would be narrowly more politic not to.
Now Is the Moment for Biden’s Age to Be an Asset, New York Times (free access), October 13, 2023
Experts and advocates estimate that there are at least 3,000 such so-called unbefriended people. Massachusetts, unlike many other states, has no statewide public guardianship program and no funding for guardians of indigent, incapacitated, unbefriended people.
Wynn Gerhard, Guardianship Policy Institute (also a member of DignityMA), Lawmakers seek a way to boost the role of guardians, Hospital backups are bad for our health. Something must be done. *The Boston Globe, October 14, 2023
“These two things can exist at one time. You can have a lot of nurses, but really at the intersection of care that’s delivered to the public, you could have a shortage because those institutions are not hiring enough of them.”
Linda Aiken, the founding director of the Center for Health Outcomes and Policy Research at the University of Pennsylvania, Is there a nursing shortage in the United States? Depends on who you ask, STAT News, October 16, 2023
There are 1 million more registered nurses than are currently employed as nurses; the number of candidates who are passing the nurse licensure exam for the first time is continually growing; and the registered nurse workforce is growing — but just in settings other than acute care, such as insurance or ambulatory care. (The NNU published its memo in May 2023, when the tally of registered nurses was 4,604,199; when STAT checked this month, that number had grown by more than 100,000 to 4,708,451.)
Statement of National Nurses United decrying the use of the term “nurse shortage,”, Is there a nursing shortage in the United States? Depends on who you ask, STAT News, October 16, 2023
Even before the pandemic, millions of older adults in the US struggled to pay for housing, causing them to spend less on food, healthcare, and other necessities. The pandemic exacerbated these issues: not only did its economic fallout affect older adults, but it shuttered important community resources and strained the care workforce. As a result, inequalities among older adults—some of them rooted in structural discrimination in housing and public policy—deepened.
Advancing Housing and Health Equity for Older Adults: Pandemic Innovations and Policy Ideas, Joint Center for Housing Studies of Harvard University, October 6, 2022
“When more than 75% of nursing homes in a county were unionized, the facility-level presence of a union was associated with a 9.0 percentage point decrease in staff turnover.”
Adam Dean, PhD; Jamie McCallum, PhD; and Atheendar Venkataramani, MD, PhD; et al., Unionization may decrease staffing turnover in nursing homes: study, McKnight’s Senior Living, October 16, 2023
These care settings are not just congregate care facilities for vulnerable, older adults but a dynamic, complex health care setting delivering a unique set of services with medical, social, and psychological needs balanced among residents, families, and staff. Nursing homes have been at the center of the COVID-19 pandemic since February 2020.
Nursing Home Staff Turnover and the Whole-of-Person Framework for Staff Retention , JAMA Network Open, October 13, 2023
Exploring policies that promote a community approach to recruitment and retention and build an organic sense of belonging-in-place may be key for legislators and health care policy experts trying to solve the problem of US nursing home staff turnover.
Nursing Home Staff Turnover and the Whole-of-Person Framework for Staff Retention , JAMA Network Open, October 13, 2023
“Given the recently announced federal minimum staffing mandates, there is a lot of policy focus at the moment on boosting the number of staff hours per resident day. But our results suggest that we should also be giving similar weight to finding ways to retain staff and reduce turnover in an effort to improve nursing home quality.”
Brian McGarry, PhD, of the Division of Geriatrics and Aging, in the Department of Medicine at the University of Rochester, Researchers say retention needs more attention as feds push to increase nursing home staffing levels, McKnight’s Senior Living, October 9, 2023
October 10, 2023
“Having a disability and being healthy are not mutually exclusive.”
Andrés Gallegos, chair of the National Council on Disability, an independent government advisory agency, Disability groups win fight to be included in health equity research, *Washington Post, September 26, 2023
“I grew up watching my mom care for seniors in their homes, and I have a deep appreciation for the important work that personal care attendants do. Our administration is proud to reach this historic agreement that provides fair pay and benefits for PCAs that reflect the heroic contributions they make to Massachusetts families.”
Governor Maura Healey, Higher wages coming for home care workers, *Gloucester Times, October 7, 2023
In our world of increasing tolerance for the variety of human tastes, it seems strange that an innocuous personal choice made by two consenting adults is still jarring to us. People like to say our attachment to the older man/younger woman model is “biology,” but when it comes to two individuals, I think we can assume that they have worked out the reproductive issues between themselves. And of course, as a culture, we have abandoned many of the brutal imperatives of the Darwinian wild.
By Katie Roiphe, Our Hang-Up With ‘Cougars, *Wall Street Journal, October 5, 2023
“Curing isn’t enough anymore. Now we have to dial back, not dial up.” [to minimize later life complications].
Dr. Greg Armstrong, the principal investigator for the Childhood Cancer Survivor Study, It Takes a Lifetime to Survive Childhood Cancer, *New York Times, October 6, 2023
“While climate hazards impose financial challenges for households across income and wealth spectrums, financial burdens are not distributed evenly. For vulnerable households, the financial costs and losses associated with climate hazards have the potential to compound existing inequities.”
U.S. Treasury Report, You need to be saving more for emergencies, thanks to climate change, *Washington Post, October 6, 2023
“CDC opened the ordering process before they had enough vaccine to meet the demand. Their inventory is catching up now, but they did not have enough vaccine from the manufacturers right away to meet the initial demand in its entirety.”
Joseph Wendelken, spokesman for the Rhode Island Department of Health, COVID-19 is back in nursing homes. So where is the vaccine?, NPR, October 6, 2023
“This virus is so contagious, that if you didn’t get that shot, or if you haven’t had COVID lately,’’ she said, “I wouldn’t go into a nursing home right now.”
Stephanie Igoe, Administrator, Bethany Home, Providence, RI, COVID-19 is back in nursing homes. So where is the vaccine?, NPR, October 6, 2023
“I think reality TV is the downfall of civilization.”
Vicki Wyan, age 69, commenting after watching “The Golden Bachelor”, ‘Too Young for Me!’: A Senior Center Watches ‘The Golden Bachelor’, New York Times (free access), October 5, 2023
“Love is blind, but marriage is an eye-opener.”
Linda Arns, age 78, who has been married more than 50 years, ‘Too Young for Me!’: A Senior Center Watches ‘The Golden Bachelor’, New York Times (free access), October 5, 2023
“Those are two of the biggest killers right there. When you eliminate excessive alcohol intake and smoking, one thing you’re left with is genetics. . . Many people who are 80 years old now have more in common with people a couple generations ago who were 60.”
Bradley Willcox, a professor and research director at the Department of Geriatric Medicine at the University of Hawaii, For Biden and Trump, Age Really Is Just a Number, *Wall Street Journal, October 6, 2023
[Jay Olshansky, a professor of epidemiology and biostatistics at the University of Illinois, Chicago] estimates that Trump and Biden would likely have at least an 80% chance of completing their terms in good health, far better than voters think. He suggests voters worry less about the candidates’ ages and more about their values and policies.
For Biden and Trump, Age Really Is Just a Number, *Wall Street Journal, October 6, 2023
Only 3% of U.S. adults say it’s best for a president to be in their 70s or older, according to a separate Center survey conducted in June. Roughly half of Americans (49%) say it’s best for a president to be in their 50s, while another 24% say it’s best for a chief executive to be in their 60s.
Most Americans favor maximum age limits for federal elected officials, Supreme Court justices, Pew Research Center, October 4, 2023
“If the VA is sending vets to substandard care, that in itself is a scandal.”
Robert Blancato, the national coordinator of the Washington-based Elder Justice Coalition, A Colorado veteran needed help. He ended up dead after the VA referred him to a nursing home, Denver Gazette, October 5, 2023
“The impact that COVID-19 had on disadvantaged populations, including people with disabilities, was enormous and demonstrates the critical importance of health disparities research.”
Eliseo Pérez-Stable, director of the National Institute on Minority Health and Health Disparities at the National Institutes of Health, Disability groups win fight to be included in health equity research, *Washington Post, September 26, 2023
October 3, 2023
“Covid is not pretty in a nursing home.
Deb Wityk, a 70-year-old retired massage therapist who lives in a nursing home and has contracted the disease twice, As Covid Infections Rise, Nursing Homes Are Still Waiting for Vaccines, New York Times (free access), September 27, 2023
The United States has been phenomenal in screwing up vaccinations. This idea that some are under Part B and some are under Part D and some can be billed by a pharmacy — who in God’s name came up with this?”
David Nace, chief medical officer of UPMC Senior Communities in Pittsburgh, As Covid Infections Rise, Nursing Homes Are Still Waiting for Vaccines, New York Times (free access), September 27, 2023
“Between the COVID pandemic and other societal changes, including technology, it seems that sometimes the art of conversation, we get out of practice or it gets a little lost. This ConversationsMA project is an example of how we sort of reinvent or remind people of the value of face-to-face conversation.”
Caitlin Coyle, co-chair of the Massachusetts Task Force to End Loneliness and Build Community and director of the Center for Social and Demographic Research on Aging at UMass Boston’s Gerontology Institute, Interpersonal Connections Touted in Fight Against Loneliness, State House News, September 28, 2023
Older adults and people with disabilities are disproportionately impacted by all types of disasters. Disabled people and older adults may not be able to evacuate, access shelters, and receive information in accessible formats. They may lose critical home and community-based services and be unnecessarily forced into institutional settings (such as nursing homes), or even experience higher fatality rates. Those who are living with dementia-related health conditions, such as Alzheimer’s disease, may also experience extra risk.
Older adults and people with disabilities also often face greater risks when it comes to the multitude of extreme weather events and emergencies we now face, especially if they are living alone, are low-income, have a disability, or live in rural areas.
National Preparedness Month Comes to a Close, Administration on Community Living, September 2023
The nursing home industry is not merely a healthcare industry. Rather it is primarily a real estate and finance business. With large amounts of write downs for, among other things, depreciation and interest, direct care revenue is greatly enhanced by tax subsidies. . . The industry has become financialized through ancillary subsidiaries providing labor, insurance, therapy, and other goods and services, which has resulted in increasing extraction of cash without a correlative increase in quality of care. . . There appears to be no focus on what facilities are paying related parties for goods and services. . . [T]he nursing home industry has been transformed in a mere two decades. The mom-and-pop nursing home is far gone. A few nonprofit facilities that are not part of a chain still exist, but we are uncovering serious grifting in even some of those places. In the for-profit sector, sophisticated financiers are leveraging a variety of legal and financial innovations such as the limited liability corporation (LLC) Umbrella Partnership Real Estate Investment Trust (UPREIT), private equity, and other legal, financial structures to extract optimal cash flow with minimal expenses for care.
David Kingsley, The Nursing Home Industry’s Accounting Firm is Providing Propaganda for Low Staffing Standards, Tallgrass Economics Finance and Politics, September 30, 2023
Loneliness is as deadly as smoking 15 cigarettes a day and more lethal than consuming six alcoholic drinks a day, according to the surgeon general of the United States, Dr. Vivek Murthy. Loneliness is more dangerous for health than obesity, he says — and, alas, we have been growing more lonely.
We Know the Cure for Loneliness. So Why Do We Suffer?, *New York Times, September 7, 2023
“The fact that a corporation is making it so difficult for somebody to get accommodations for their disability — I consider that discrimination.”
Joanna Lubkin, a Unitarian Universalist minister, who has chronic pain and fatigue and relies on her service dog, a 4-year-old black Labrador named Sully, Confused, Frustrated and Stranded at the Airport With a Service Animal, *New York Times, September 5, 2023
“Something that happens to you, when you have some sort of disability that changes your awareness, which changes your interaction with facts of life. You just see things with a different perspective, and you’re surprised by the change. I’m not sure, at this point, that I can say what it is I’ve learned, but I’m getting new information in a way that is new to me.”
Paul Simon reflecting on his hearing loss, Paul Simon is beginning to accept the hearing loss that makes it difficult for him to perform, Hastings Tribune, September 13, 2023
“It shouldn’t be this complicated. The big meta here is everybody in this country should have access [to paid leave for family caregiving]. That is the aspiration and the goal. That is why we need a federal program that covers everyone.”
Vicki Shabo, a senior fellow for paid leave policy and strategy at New America, The High-Wire Act of Caregiving and Saving for Retirement, *New York Times,, September 10, 2023
Despite interest among federal policymakers and states to develop high-performing long-term services and supports (LTSS) systems, the U.S. lacks a national solution to reduce disparities in care and to address growing demand. LTSS include medical and nonmedical services that help individuals with functional limitations complete daily tasks (e.g., bathing or medication management). Federal policymakers should drive bipartisan reforms for high-value LTSS systems nationally.
Transforming LTSS Systems: State Trends and Bipartisan Reform Opportunities, Bipartisan Policy Center, August 2023
There is no silver bullet solution, and hospitals, nursing homes, insurers, and policy makers all have roles to play in addressing the problem [of bottlenecks in the health care system in Massachusetts].
Patients in hallways, long waits for beds: Hospital bottlenecks reach crisis levels, *Boston Globe, The Editorial Board, October 2, 2023
With one out of every seven medical-surgical beds currently occupied by patients who no longer require acute hospital care, Massachusetts must continue to work on “unclogging” a system that is currently unable to best meet the needs of patients. . . Improving patient transitions – whether to the home or to post-acute care facilities – can only happen through a sustained, multi-faceted approach that engages stakeholders from across the care continuum, in addition to partners in state government, the federal government, as well as the commercial health insurance industry.
A Clogged System: Keeping Patients Moving Through Their Care Journey, Massachusetts Hospital Association, June 2023
[Laphonza Butler, who has been selected by California Governor Gavin Newsom to be the interim U.S. Senator succeeding Senator Diane Feinstein] served as the president of SEIU Local 2015, a union that represented 325,000 nursing home and home-care workers throughout California. She previously served as an SEIU international vice president and headed SEIU United Long Term Care Workers.
Newsom taps Emily’s List leader to fill Feinstein’s Senate seat, *Washington Post, October 2, 2023
Presently, the [nursing home] industry grapples with heightened volatility in three crucial dimensions — economic, operational, and regulatory.
38th SNF Cost Comparison and Industry Trends Report, CliftonLarsonAllen, September 29, 2023
September 26, 2023
Inadequate nursing home staffing is not just an issue for today’s residents. Each of us may be one accident away from a nursing home. Whether we are 80 years old with a broken hip or 30 years old with a head injury, we shouldn’t have to worry that we’ll end up neglected in a nursing home too understaffed to keep us safe.
Biden’s nursing home staffing proposal is dangerously inadequate, The Hill, September 22, 2023
Transparency in physician and provider ownership is necessary to understand and address the impact of the corporate transformation of the U.S. health care system. Who owns a doctor’s practice, hospital, or nursing home can dramatically affect the cost, accessibility, affordability, and quality of the services. Yet the chain of corporate ownership and web of financial interests are almost totally opaque to patients, purchasers, policymakers, researchers, and regulators.
The Missing Piece in Health Care Transparency: Ownership Transparency, Health Affairs, September 22, 2023
Lack of ownership transparency allows health care consolidation to intensify unchecked, with corresponding increases in prices. Opacity in ownership obscures the pattern of stealth consolidation through which a single acquirer may monopolize a local market through add-on acquisitions. . .
To achieve true transparency in health care, it is essential to disclose who owns and controls health care facilities, physicians, and other providers. Ownership transparency can help prevent conflicts of interest, enhance accountability, promote competition, and must be seen as a complementary measure to price and location transparency to achieve the overarching goal of lowering health care costs
The Missing Piece in Health Care Transparency: Ownership Transparency, Health Affairs, September 22, 2023
A recent study found that more cancer patients died of Covid during the Omicron surge than in the first winter wave, in part because people around them had stopped taking precautions.
In hospitals, viruses are everywhere. Masks are not. *New York Times, September 23, 2023 (updated)
“Alzheimer’s disease has crushed Marti’s memory. At this stage, she cannot form a word. But somehow the pathway to musical melodies remains clear and it is along this pathway that she and I are able to communicate.”
Still there: Alzheimer’s has ravaged his mother’s memory, but music brings her back, NPR News, September 21, 2023
By 2034, a little over a decade from now, the United States will have more seniors than youth for the first time in its history. By just a year later, those of us aged 85 and older will have nearly doubled, in a span of just 25 years, to almost 12 million. And by 2050, the population of centenarians — those who live to 100 or older — will swell to 3.7 million, more than everyone now living in Connecticut.
The number of Americans living to 100 is exploding. But there’s a glaring problem. *Boston Globe, September 18, 2023 (Updated)
After I reset my iPhone, I noted that it automatically came preloaded with an app for stocks. Pressing on this app shows data on the Dow Jones average and various stocks. If we can have an app for stocks, we certainly should have an app to prevent suicide.
Every smartphone should have an app to connect to 988, the mental health crisis line, STAT News, September 22, 2023
“We just want our happily ever after.”
Julia Simko, 33,who hopes to marry Ray Vercruysse, 35, who both live with developmental disabilities, For Disabled Couples, a Plea for Marriage Equality, New York Times (free access), September 15, 2023
“However, in order to make sure the proposed rule has this intended effect, we must also address the severe staffing shortages my investigation uncovered at state nursing home survey agencies across our Nation.”
Senate Committee on Aging Chair Bob Casey (D-Pa.), Nursing home inspector shortage could undermine staffing proposal, Axios, September 7, 2023
September 19, 2023
All this talk of age — Biden is only eight years older than I am — has put more pressure on senior citizens to look and act youthful, but I’m not sitting at home waiting for my library books to be delivered — I’m still working.”
Annie Blatz, 72, a sales manager with Kinlin Grover Compass and a past president of the Cape Cod & Islands Association of Realtors, The real grandparents of Washington, D.C.: The reality show no one wants, Boston Globe, September 16, 2023 (updated)
In short, money spent on implementing work requirements could be better spent on investments in the direct care workforce and improving the quality of their jobs rather than on efforts to take direct care workers’ health insurance away.
Medicaid Work Requirements Will Harm Direct Care Workers, PHI, August 17, 2023
“The largest decline in purpose in life occurred following onset of cognitive impairment. . . Purpose can be increased through engagement in goal-directed activities among individuals with dementia.”
Lack of purpose in life linked to cognitive decline, study finds,
McKnight’s Long-Term Care News, September 18, 2023
“Insurers are, in effect, denying Americans necessary care in order to fatten and pad their bottom lines, and that phenomenon is unacceptable. I want to put these companies on notice. If you deny life-saving coverage to seniors, we are watching, we will expose you, we will demand better, we will pass legislation if necessary.”
Senator Richard Blumenthal (D-CT), ‘Impossible’ Medicare Advantage denials decried during Senate hearing,, Mcknight’s Long-Term Care News, May 18, 2023
It is time to finish the revolution. Mandating developmental disability services in adulthood and investing in home- and community-based care are not optional. Accessing employment in adulthood is as necessary as accessing education in childhood—and arguably more valuable.
A Broken Employment System Leaves Autistic Adults Stranded, Scientific American, September 13, 2023
“We call this the dignity of failure – a place where mistakes can be made; where mistakes are even welcomed.”
Tom D’Eri, owner, Rising Tide Car Wash in Florida, Car Wash Empowers Autistic Employees with a Sense of Self Worth, Sunday Today (NBC Video), September 17, 2023
September 11, 2023
“Establishing minimum staffing standards for nursing homes will improve resident safety and promote high-quality care so residents and their families can have peace of mind. When facilities are understaffed, residents suffer. They might be unable to use the bathroom, shower, maintain hygiene, change clothes, get out of bed, or have someone respond to their call for assistance. Comprehensive staffing reforms can improve working conditions, leading to higher wages and better retention for this dedicated workforce.”
Health and Human Services Secretary Xavier Becerra, HHS Proposes Minimum Staffing Standards to Enhance Safety and Quality in Nursing Homes, Centers for Medicare and Medicaid Services, September 1, 2023, HHS Minimum Staffing Standards
“Today, we took an important first step to propose new staffing requirements that will hold nursing homes accountable and make sure that residents get the safe, high-quality care that they deserve.”
Chiquita Brooks-LaSure, Center for Medicare and Medicaid Services, HHS Proposes Minimum Staffing Standards to Enhance Safety and Quality in Nursing Homes, Centers for Medicare and Medicaid Services, September 1, 2023, HHS Minimum Staffing Standards
In a long-awaited and highly controversial decision, the federal Centers for Medicare and Medicaid Services (CMS) has proposed that nursing homes provide at least three hours of staff time daily for every patient or resident.
Would it meaningfully improve care at nursing facilities? Not by much.
What New Nursing Home Staffing Rules Would Mean For Residents And Patients, Forbes, September 5, 2023, What New Rules Mean
CMS “sabotaged” the push for sufficiently high staffing through the instructions it gave its contractor. “Every threshold they looked at was below 4.1. How can that possibly be a decent study? It’s just unacceptable.”
Charlene Harrington, professor emeritus of nursing at the University of California-San Francisco, CMS Study Sabotages Efforts to Bolster Nursing Home Staffing, Advocates Say, KFF Health News, August 29, 2023, CMS Study Sabotages
“Fundamentally, this standard is wholly inadequate to meet the needs of nursing home residents.”
Richard Mollot, executive director of the Long Term Care Community Coalition, Biden Administration Proposes New Standards to Boost Nursing Home Staffing, KKF Health News and New York Times (free access), September 1, 2023, Boost Nursing Home Staffing Standards
“The standards are a lot lower than what a lot of experts, including myself, have called for over the year. There are some real positives in here, but I wish the administration had gone further.”
David Grabowski, a professor of health care policy at Harvard Medical School, Biden Administration Proposes New Standards to Boost Nursing Home Staffing, KKF Health News and New York Times (free access), September 1, 2023, Boost Nursing Home Staffing Standards
In 2020 the share of people 65 or older reached 17 percent, according to the Census Bureau. By 2034, there will be more Americans past retirement age than there are children.
The challenge the country faces transcends ideology, geography and ethnic or racial category, and American leaders, regardless of their party, need to confront it with the appropriate urgency.
Editorial Board, An Aging America Needs An Honest Conversation about Growing Old, New York Times (free access), September 10, 2023, Aging America
Many older people in the United States say they feel invisible in a country that has long been obsessed with youth, avoiding the inevitability — and possibilities — of old age. Americans of every generation owe it to themselves and their families to begin asking the question: Is this a challenge we want to handle on our own? Or is it something that we as a society should confront together?
Editorial Board, An Aging America Needs An Honest Conversation about Growing Old, New York Times (free access), September 10, 2023, Aging America
“Furthermore, our findings may also incentivize government investment in preventative health care and health promotion given the greater cost associated with caring for people in institutions. This will require a shift in health policy towards preventative health.”
Alice A. Gibson, BSc, APD, PhD, a research fellow at the University of Sydney in Australia, and colleagues, Unhealthy lifestyle factors associated with increased risk nursing home admission, Healio, September 1, 2023, Increased Risk of Nursing Home Admissions
For many of us, leaving our homes and navigating the outside world doesn’t require much effort. But for older adults, our towns and cities are filled with obstacles — stairs, unsafe sidewalks and crossings, inadequate lighting — that grow increasingly difficult for them as they age. On top of that, most American cities lack robust public transportation. These challenges combine to keep many older Americans at home, isolated from social and cultural activities that are proven to keep conditions like dementia at bay, from essential medical care, from the world around them.
The City Looks Different When You’re Older, New York Times (free access), September 8, 2023, Different When You Are Older
Enacting elder parole bills, which do not guarantee release based on age but rather allow older adults to be individually considered for release by a parole board, can help resolve the crisis of aging behind bars, save substantial money, and return people to the community to repair the harm they long ago caused — before they are on death’s doorstep.
Carol Shapiro, New York, Compassionate Release for Those Aging Behind Bars, *New York Times, August 21, 2023, Compassionate Release
Compassionate release laws at the state and federal levels should make dementia an explicit criterion for early release. Facilities should also screen older patients for dementia on a regular basis and develop protocols for requesting compassionate release and expediting placement in memory care facilities. The U.S. prison population is aging and change is urgently needed.
Caitlin Farrell, Nicole Mushero, William Weber, physicians volunteering with the Medical Justice Alliance, Compassionate Release for Those Aging Behind Bars, *New York Times, August 21, 2023, Compassionate Release
“When you give increased odds to people who may be more impacted by a disease, you are not putting any one group in front of the other, you are weighting the odds to makes sure no one group is being left behind.”
Erin McCreary, director of infectious diseases improvement and clinical research innovation at the University of Pennsylvania Medical Center, How a ‘weighted lottery’ helped underserved patients get a scarce Covid drug, STAT News, September 1, 2023, Weighted Lottery
“I thought you, like, forgot where you parked your car. I didn’t think you forgot how to walk, how to eat, how to breathe eventually and I didn’t realize essentially how someone in the throes of dementia required 24 hours a day, seven days a week care and supervision.”
Seth Rogen commenting on how debilitating Alzheimer’s is, How Seth Rogen and Lauren Miller Rogen are using comedy to support Alzheimer’s care, STAT News, September 8, 2023, Seth Rogen
“The experience of navigating these illnesses affects the entire family … it was given to Brian as a death sentence, and to me, frankly, it felt like imprisonment. Brian’s caregiving costs upwards of $300,000 a year, out of pocket, no insurance coverage, and the only way we’ve been able to manage it is by friends and family pitching in.”
Sandra Abrevaya, wife of Brian Wallach who has amyotrophic lateral sclerosis (ALS), ALS advocates say criticism of new drugs misses bigger picture, STAT News, September 8, 2023, ALS Advocates
What does a 48-year-old woman look like now? Are 82-year-olds all supposed to look like recent Sports Illustrated Swimsuit cover model Martha Stewart? And what about being in your late 20s or early 30s, when your face begins to look more adult? What does “more adult” mean when anyone can pay to give themselves the smooth, immobile face of the moment?
In other words: What does it look like to age?
What aging looks like now, *Washington Post, August 29, 2023, What Aging Looks Like Now
“I think aging is a beautiful thing,” she said. “I think if you’re not aging, you’re dead. The goal is to age as beautifully as you want to, for yourself.”
Shereene Idriss, a New York-based dermatologist, What aging looks like now, *Washington Post, August 29, 2023, What Aging Looks Like Now
After all, in 1926, when [Elaine] LaLanne was born, few Americans made exercising a part of their daily lives. Nearly a century later, Ms. LaLanne is a “testament to the efficacy of a lifelong exercise habit” — and perhaps even more important, the power of choosing how you want older age to look and feel.
Shelly McKenzie, an independent scholar and the author of “Getting Physical: The Rise of Fitness Culture in America.” At 97, the First Lady of Fitness Is Still Shaping the Industry, *New York Times, September 6, 2023 (Updated), First Lady of Fitness
“You have to move. If you don’t move, you become immovable.”
Elaine LaLanne At 97, the First Lady of Fitness Is Still Shaping the Industry, *New York Times, September 6, 2023 (Updated), First Lady of Fitness
“There’s almost no organ system long Covid doesn’t touch.”
Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine, Long Covid Poses Special Challenges for Seniors, New York Times, September 3, 2023, Special Challenges for Seniors
“The current framework for disasters centers on the quantifiable damage to physical infrastructure and its corresponding economic costs. This emphasis, unfortunately, neglects the human impacts, an omission that is particularly troubling regarding extreme heat.”
Jordan Clark, who studies federal heat policy at Duke University’s heat policy innovation hub, A harrowing summer’: extreme weather costs hit US as 60m under heat alerts, The Guardian, September 6, 2023, Harrowing Summer
Dignified home care, i.e., work that pays a living wage and takes into account the well-being and agency of both the care worker as well as the clients who receive care—is a powerful multi-solver in the movement for well-being, equity, and racial justice.
Healing Home Care: How Shared Stewardship Can Amplify the Dignity of Home Care Work, The Rippel Foundation, Undated, Read the Healing Home Care Blog
“It’s unacceptable that some nursing homes do not provide a full public accounting of who their medical director is. Our bipartisan bill will rectify that and require transparency that families need to have faith in their nursing homes.”
Representative Mike Levin (D-CA), Rep. Levin’s First Legislation of the 118th Congress Would Improve Public Disclosure of Medical Directors, Office of Mike Levin, January 10, 2023, Public Disclosure of Medical Directors
Climate change threatens our health by producing extreme weather events, increasing the prevalence of communicable disease, and jeopardizing our access to food, fresh water, and clean air. Research shows that older adults are particularly susceptible to the health impacts of climate change. . .
Because of the normal changes that come with aging, older adults are more vulnerable to heat illnesses, which occur when the body is exposed to high temperatures and cannot cool itself. Preexisting medical conditions, such diabetes or heart disease, increase the chances an older adult will have a negative reaction when exposed to high temperatures.
Effects of Climate Change on Older Adults, Aging and Climate Change Clearinghouse – Cornell University
Approximately 40% of all inpatient operations are performed on patients aged 65 years and older, and nearly one-third of older Americans face surgery in their last year of life. Compared with younger people, older adults are at a higher risk of postoperative mortality and complications due to decreased physiological reserve and diverse factors that contribute to frailty.
Racial disparities in inpatient palliative care consultation among frail older patients undergoing high-risk elective surgical procedures in the United States: a cross-sectional study of the national inpatient sample, Scholar, July 13, 2023, Racial Disparities Among Frail Older Adults
What’s needed is a new kind of “neighborhood watch,” where neighbors make deliberate efforts to get to know each other – not just for a friendly wave across the fence or from one door to the next. . . If I know my neighbor does not have family nearby or is in need of insulin, I can be a better neighbor in an emergency.
Nobody should be facing the climate crisis alone; Unfortunately, the elderly are often alone and vulnerable, CommonWealth, August 28, 2023, Facing Climate Crisis Alone
Unfortunately, people over 65 also include the highest percentage of those who do not want to accept the scientific consensus on climate change. It’s high time, therefore, for grandchildren to sit down their grandparents and have “the talk.”
Nobody should be facing the climate crisis alone; Unfortunately, the elderly are often alone and vulnerable, CommonWealth, August 28, 2023, Facing Climate Crisis Alone
August 28, 2023
It is only fitting that a man who has built homes for so many others would return to his own home as he sees his time growing short. And when his time in hospice draws to a close, there is likely to be no medical team rushing in, no chest compressions or shocks. There will be only a final breath, and then there will be quiet.
Dr. Daniela Lamas, a pulmonary and critical-care physician at Brigham and Women’s Hospital commenting about Jimmy Carter and his hospice care, A Fitting Final Gift From Jimmy Carter, *The New York Times, August 28, 2023, Fitting Final Gift
Lavender [Darcangelo]’s story isn’t just a heartwarming tale; it is an important story. It shows us all that we should embrace the differences we have and not always worry about what people may think of our differences. If fact, it is our differences that make life interesting and worth living. Lavender’s goal is to show people that there are many different ways to live a happy and successful life.
Lavender Darcangelo A Blind And Autistic Singer From Fitchburg, Massachusetts, The Music Man (text with video), August 23, 2023 [Editor’s note: Lavender is currently a finalist competing on NBC’s America’s Got Talent)]
“Despite hearing and sight issues (age related) the dog had a healthy appetite for food and human company and had a lovely friendly temperament. On assessment we realized that this dog could still have a good quality of life in the right environment
Helen Hewett, the manager of Carrick Dog Shelter, Tears As Elderly Dog, 21, Abandoned at Shelter by Owner for Being ‘Too Old’, Newsweek, August 24, 2023, Elderly Dog
“I think the new approach [regarding masking mandates] is we want to make that information available to the public and give people some warning that there may be some increases in disease activity [a]nd then people decide for themselves sort of how they want to react and what kind of precautions they want to take.
Dr. Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials (ASTHO), Mask mandates reemerge amid upturn in COVID-19 cases, The Hill, August 24, 2023, Mask Mandates Remerge
Rural communities embody a unique way of life that appeals to many, and many have inherent strengths. However, the challenges confronting rural communities, including workforce shortages, healthcare inequities, and support system inadequacies, cannot be ignored.
Ensuring Age-Friendly Public Health in Rural Communities: Challenges, Opportunities, and Model Programs, Trust for America’s Health and Age-Friendly Public Health Systems, August 23, 2023, Age Friendly in Rural Communities
“The number of state prisoners age 55 and older has increased by 400 percent from 1993 to 2013, and it is predicted that by 2030, this age group will account for one-third of the US prison population. . . As the US population ages and rates of dementia increase, the prevalence of dementia among those involved in the criminal legal system can also be expected to increase.”
according to a 2022 report by the American Bar Association.Graying of Massachusetts prisons cries out for a dose of compassion, *The Boston Globe, The Editorial Board, August 27, 2023 (updated), Graying of Massachusetts Prisons
“People linger in [state prisons] without an advocate, when they have every right to be out on medical parole.”
Ada Lin, an attorney at Prisoners’ Legal Services of Massachusetts, Graying of Massachusetts prisons cries out for a dose of compassion, *The Boston Globe, The Editorial Board, August 27, 2023 (updated), Graying of Massachusetts Prisons
Racially and ethnically minoritized populations and tribal communities often face preventable inequities in health outcomes due to structural disadvantages and diminished opportunities around health care, employment, education, and more.
Review of Federal Policies that Contribute to Racial and Ethnic Health Inequities, National Academies, 2023, Racial and Ethnic Health Inequities
“On this first anniversary of the Inflation Reduction Act, Americans are seeing the benefits – such as free recommended vaccines, lower insulin costs, and the enhanced tax credits that help more people afford their premiums in the Marketplaces.”
Centers for Medicare & Medicaid Services (CMS) Administrator Chiquita Brooks-LaSure, On the First Anniversary of the Inflation Reduction Act, Millions of Medicare Enrollees See Savings on Health Care Costs, U. S. Department of Health and Human Services, August 16, 2023, Anniversary Inflation Reduction Act
Many Medicaid enrollees, including older adults, are also confused by the unwinding process and their eligibility for Medicaid or transitioning to Medicare, Marketplace, or employment-based insurance.
Unwinding of the Medicaid continuous eligibility requirements that were put in place during the COVID-19 Public Health Emergency (PHE) continues to impact Medicaid enrollees across states., Justice in Aging, Undated, Unwinding of Medicaid
Older women of color ages 50 and over were overrepresented among essential workers and disproportionately provided caregiving.
Issue Brief: The Economic Security and Health of Older Women of Color, Justice in Aging, July 12, 2023, Economic and Health Security of Older Women of Color
“Strategies to improve lifestyle factors, including smoking cessation, reducing sitting time, increasing physical activity and improving sleep, should be explored as new public health measures to help reduce the future risk of nursing home admission.”
People over 60s with the unhealthiest lifestyles more likely to require nursing home admission, News-Medical.net, August 24, 2023, Unhealthiest Lifestyles
“The extent of older persons actually believing themselves to be inferior from others because of their age is staggering.”
Marvin Formosa, associate professor of gerontology at the University of Malta, Negative thoughts about aging can be harmful. Here’s how to reduce them. *Washington Post, August 17, 2023, Negative Thoughts about Aging
“People with dementia can be very emotionally sensitive and they can pick up on that presence. Just because someone’s linear rationality is compromised that doesn’t mean their consciousness is.”
Stephen G. Post, a bioethicist at Stony Brook University, an expert in compassionate care, and author of “Dignity for Deeply Forgetful People: How Caregivers Can Meet the Challenges of Alzheimer’s Disease.” To ease my depression, I volunteered to help dying people, *Washington Post, August 15, 2023, Volunteered to Help Dying People
In a study presented at the annual meeting of the American Society for Nutrition, researchers found that men who had adopted all eight habits by middle age lived 24 years longer than men whose lifestyle included few or none of the habits. Women’s life expectancy increased by 23 years for those who had adopted the eight habits compared with women who had not.
Adopting 8 therapeutic habits can add decades to your life, study says, *Washington Post, August 21, 2023, 8 Therapeutic Habits
“Aging has excited the imagination throughout the history of humankind, but it’s only recently that it has been subjected to profound scientific scrutiny.”
Carlos Lopez-Otin, a biochemist at the University of Oviedo in Spain and co-author a hallmark paper on the aging process, How We Age—and How Scientists Are Working to Turn Back the Clock, *The Wall Street Journal, August 26, 2023, How We Age
Who lives in America today?
Because of the government’s outdated standards for data collection, we don’t really have an accurate picture.
America Needs Better Data on Race and Ethnicity, Center for American Progress, June 11, 2023, Better Data
In the United States and around the world, extreme heat is becoming increasingly common and more dangerous. The acute damage produced by extreme heat events and the ripple effects of chronic heat exposure have broad implications, among them an increase in heat-related illnesses and heightened demand for health care services.
The Health Care Costs of Extreme Heat, Center for American Progress, June 27, 2023, Health Care Costs of Extreme Heat
“The response community is just maxed out [regarding extreme heat], there aren’t a lot of additional resources available. The summer should be a wake-up call because our systems and infrastructure are built on assumptions made in the 1950s and 1960s that just don’t exist now. We need a major rethink and need to start planning for worse to come, rather than just responding.”
Jim Whittington, an expert on incident management at Oregon State University, After America’s summer of extreme weather, ‘next year may well be worse’, The Guardian, August 26, 2023, Next year may be worse
“This is just the result of poor policymaking. I think that vaccines, all vaccines, should be accessible in all settings of care, and so this fragmentation is really just not good.”
Richard Hughes IV, a vaccine-law expert at the firm Epstein Becker Green and the former vice president of public policy at Moderna. Commenting on the lack of a universal mandate for the R.S.V. vaccination, Some Older Adults Are Being Charged Over $300 for the New R.S.V. Vaccine, *New York Times,
August 25, 2023, New R.S.V. Vaccine
“Electronic visit verification is the equivalent of putting an ankle monitor on people with disabilities and telling us where we can and can’t go. It turns having a disability into a crime.”
Disabled travel blogger Karen Wilson, The Vast Surveillance Network That Traps Thousands of Disabled Medicaid Recipients, Slate, July 26, 2023, Vast Surveillance Network
It belongs to all of us, as does the responsibility for solving it. The cycle of shutdowns of Boston’s tent city has sent some of the unhoused there into the suburbs. Meanwhile, many of those remaining on Mass and Cass hail from places like Essex County.
Editorial, Homelessness, a shared problem, needs a universal solution, Salem News, August 28, 2023, Homelessness a Shared Problem
“A lot of people think, ‘I got covid, I got over it and I’m fine,’ and it’s a nothingburger for them. But that’s not everything.” After a couple of years, “maybe you’ve forgotten about the SARS-CoV-2 infection … but covid did not forget about you. It’s still wreaking havoc in your body.”
Ziyad Al-Aly, a clinical epidemiologist at Washington University School of Medicine in St. Louis and chief of research at the Veterans Affairs St. Louis Health Care System, Many long-covid symptoms linger even after two years, new study shows, The Washington Post (free access), August 21, 2023
Data also show that pedestrians over 55 on average had a death rate two times higher than younger age groups.
Record 101 Pedestrians Died on Roads In 2022, State House News, July 18, 2023, Pedestrians Died
August 21, 2023
“I kept waiting for the cavalry to come, and it really hasn’t, even today. At no time during the pandemic did we prioritize nursing homes.”
Dr. David Grabowski, a health care policy researcher at Harvard Medical School, How Nursing Homes Failed to Protect Residents From Covid, New York Times (free access), August 19, 2023, Nursing Homes Failed to Protect
Some long-proposed changes could help protect residents and staff from future pandemics. Facilities could improve their ventilation systems. They could abandon “semiprivate” rooms for private ones. Dividing buildings into smaller units with consistently assigned staff — an approach pioneered by the Green House Project — would both bolster relationships and reduce residents’ exposure to infection from workers coming and going.
How Nursing Homes Failed to Protect Residents From Covid, New York Times (free access), August 19, 2023, Nursing Homes Failed to Protect
“ [Medical] debt is not a morality issue.”
Dr. Donald Berwick, IHI Senior Fellow, The Crisis of Medical Debt in the US, Institute for Healthcare Improvement, August 3, 2023, Crisis of Medical Debt
Over 100 million individuals in the US have health care debt. It disproportionately affects historically and currently marginalized groups and can infiltrate all aspects of an individual’s life.
The Crisis of Medical Debt in the US, Institute for Healthcare Improvement, August 3, 2023, Crisis of Medical Debt
“[At the onset of the Covid pandemic,] many hospitals in New York were at a point of having to ration dialysis care to patients with acute kidney injury, nobody was adequately prepared for the volume of need that erupted.”
Dr. Jeffrey Silberzweig, chief medical officer of the Rogosin Institute in New York and chair of the Emergency Partnership Initiative at the American Society for Nephrology, Kidney doctors push to protect patients by including dialysis machines in emergency stockpile, STAT News, August 7, 2023, Dialysis Machines In Emergency Stockpiles
“In a sense, the rest of society has gone back to work, school, and activities in their lives, and then people with these higher support needs… they’re kind of stuck in conditions that are close to COVID-like quarantine.”
Hilliary Dunn Stanisz, the Disability Law Center, Thousands with complicated disabilities languish as Massachusetts struggles with staff shortages at care programs, *Boston Globe, August 8, 2023, Complicated Disabilities
“Every night, I come downstairs and cry for what he’s lost, what I’ve lost. That our lives are just so different.”
Betsy Bourne, mother of 37-year-old Tyler Bourne who was born with a rare chromosomal disorder that caused profound developmental disabilities, Thousands with complicated disabilities languish as Massachusetts struggles with staff shortages at care programs, *Boston Globe, August 8, 2023, Complicated Disabilities
Now researchers believe wildfire smoke may impact the brain too. Scientists found that people living in areas with high levels of fine particulate matter, or PM2.5, could have a greater risk of developing dementia in their late stage of life.
Long-term exposure to particulates from wildfire smoke linked to dementia risk, new study finds, STAT News, August 14, 2023, Wildfire Smoke Linked to Dementia
As strange as it seems, I know my experience isn’t unique. 1 in 6 means that 1.6 billion people have to navigate the world in a disabled body – visible, or invisible, or somewhere in between. And that? That doesn’t feel as lonely.
Cheyenne Smith, I’ve been disabled my entire life. But only strangers can tell. The Washington Post (free access), August 20, 2023
“She also did a lot of walking, so maybe that explains some of her longevity. Her life was always pretty simple: early to bed, early to rise, work hard, then come home and make a nutritious meal and be with family.”
Ethel Harrison, age 68, granddaughter of 114 year-old Elizabeth Francis, At age 114, here’s her advice: ‘Speak your mind and don’t hold your tongue’, *The Washington Post, August 18, 2023, At age 114
“I asked for her advice, and she said, ‘Speak your mind and don’t hold your tongue’. She also told me, ‘If the Lord gave it to you, use it.’”
Ethel Harrison, age 68, granddaughter of 114 year-old Elizabeth Francis, At age 114, here’s her advice: ‘Speak your mind and don’t hold your tongue’, *The Washington Post, August 18, 2023, At age 114
Gardening helped me normalize the fact that I have needs and that’s okay. I don’t think my plant is a burden because it needs more nutrients. I don’t fault it for getting bugs and not being able to fight against it.
Amanda Morris, Gardening changed how I see myself as a disabled woman, The Washington Post (free access), August 20, 2023
“If you look at the brains of people with Alzheimer’s disease and Parkinson’s, you find higher concentrations of these toxic metals: lead, iron from brake pads, platinum from catalytic converters. They are probably bypassing the blood-brain barrier. The nose may be the front door in exploiting the normal protective mechanisms of the brain.
Ray Dorsey, professor of neurology at the University of Rochester, After the blaze, coping with ‘fire brain’, *The Washington Post, August 20, 2023, Fire Brain
There were 80,000 people 100 years old or older living in the U.S. in 2020, according to the U.S. Census Bureau. The agency doesn’t have a separate category for Americans who are 110 or older, but one of its previous reports estimated they make up 0.6% of the centenarian population, which would translate into 480 supercentenarians living in the U.S.
Texas woman, 114, the 2nd oldest in the US, shares simple tips for a long life, Today Show, August 16, 2023, Second Oldest
“We must have outrage, but we must have optimism as well.”
David Lammy, agenda-setter for racial and social justice, How to be a leader for climate justice, Ted Talks, July 2023
“Where’s the help for them?”
Clifford Abihai, whose 97-year-old grandmother, Louise Abihai, is still listed as missing, It was an oasis for Maui elders. The fire brought terror and death. *Boston Globe, August 19, 2023 (Updated), Maui Elders
Even dogs have it better than some held in our prisons and jails, which can be like kilns in the summer, sickening those inside and making conditions dangerous for everybody.
Where there is no escape from the heat, *Boston Globe, August 19, 2023 (updated), No Escape from the Heat
In 2011, researchers Ann Williams and Shirley Moore proposed the Universal Design of Research as a way to “design research so that all people can be included as potential participants, to the greatest extent possible, without the need for adaptation or specialized design.”
The definition of clinical trial diversity must include disabled people, STAT News, August 17, 2023, Clinical Trial Diversity
“It’s good that state regulators are still encouraging vaccination. It will protect residents’ lives, but this [proposed] policy leaves some pretty big loopholes that you can drive a truck through.”
David Grabowski, professor of health care policy at Harvard Medical School, commenting on the Department of Public Health’s vaccination proposal which allows for many exemptions, Proposed COVID and flu vaccination rules for health workers allow many exceptions, *Boston Globe, August 10, 2023 (Updated), Proposed Vaccination Policy
“Vaccination rates of health care personnel could significantly decrease, increasing infection risk for patients and staff.”
Massachusetts Health & Hospital Association, in a recent letter to the state Health Department expressing concern regarding proposed vaccination regulations, Proposed COVID and flu vaccination rules for health workers allow many exceptions, *Boston Globe, August 10, 2023 (Updated), Proposed Vaccination Policy
“I had to leave a dentist because the building is not ADA compliant. There is a 24-inch step to get into the office. I couldn’t believe it in this day in age.”
Vivian Quint, an 89-year-old Pocasset resident who uses a walker, After Senator Duckworth shared she couldn’t access theatre, Mass. residents with disabilities say problems persist here too, *Boston Globe, August 2, 2023 (Updated)
“By creating [the Elder Justice] Unit, we are prioritizing the rights of elderly residents to live with dignity – free from abuse, neglect, and exploitation.”
Attorney General Andrea Campbell, AG Campbell Announces Mary Freeley As Director Of Elder Justice Unit, Office of the Attorney General, August 18, 2023, Elder Justice Unit
August 15, 2023
“Four or five to a room is not care with dignity. Many of these men and women had not been four or five to a room since basic training. Separate even from concerns about infection control, it’s about dignity.”
State Senator John Velis, a veteran who represents Holyoke and chairs the Joint Committee on Veterans and Federal Affairs, State Breaks Ground on New Veterans Home in Holyoke, State House News, August 14, 2023, New Veterans Home Holyoke
“Viewing disability through a social lens also meant acknowledging that a person is more disabled by their environment and the discrimination of others than their actual disability.”
Jessica Smith, How I Came to Love My Bionic Hand, Time, August 14, 2023, My Bionic Hand
It is ironic that nursing home reform commissions and congressional hearings have ignored the plight of workers while extensively noodling with the industry over ever more complicated billing systems.
NAFTA & Nursing Home Wages in the Rio Grande Valley, Tallgrass Economics, August 12, 2023, NAFTA & Nursing Home Wages
[A] few of the medical staff members told me that they previously worked in community nursing homes and that the [Memory Disorder Unit] prisoners are probably receiving better care than they would on the outside, in whatever Medicaid-subsidized beds they were likely to find themselves.
I’ve Reported on Dementia for Years, and One Image of a Prisoner Keeps Haunting Me, New York Times (free access), August 11, 2023, Image of a Prisoner
“It’s not like we are deep in a [Covid] wave. It’s just heading in a direction that’s making us pay closer attention.”
Caitlin Rivers, an epidemiologist at the Johns Hopkins Center for Health Security, An Unwelcome Visitor Returns This Summer. Hint: It’s Covid. *Wall Street Journal, July 31, 2023, Unwelcome Visitor
The largest increases [in suicide] were seen in older adults. Deaths rose nearly 7% in people ages 45 to 64, and more than 8% in people 65 and older.
US suicides hit an all-time high last year, AP News, April 11, 2023, Suicides All Time High
Like senior citizens outside prison walls, older individuals in prison are more likely to experience dementia, impaired mobility, and loss of hearing and vision. In prisons, these ailments present special challenges and can necessitate increased staffing levels and enhanced officer training to accommodate those who have difficulty complying with orders from correctional officers. They can also require structural accessibility adaptations, such as special housing and wheelchair ramps.
Aging Prison Populations Drive Up Costs, Pew, February 20, 2018, Aging Prison Populations
Writing this list revealed to me the variety of ways I determine how really accessible places are — I usually just do it and don’t often think about it. It reinforced what I already know; that the onus of responsibility is typically on the person with the disability to take the initiative of determining accessibility. Writing and seeing this list in black and white, stirred up a lot of emotions – frustrated, angry, exhausted – about the contortions that I and others with disabilities go through to participate in community life. These contortions sap our precious emotional and physical energy, which could be, and should be, used in more life-enhancing ways.
Marianne DiBlasi, 9 ways that I determine accessibility, Disability Issues, Vol. 43, No. 3, Summer 2023, Disability Issues Vol. 43, No. 3, Summer 2023
“The lie of Michael’s adoption is one upon which Co-Conservators Leigh Anne Tuohy and Sean Tuohy have enriched themselves at the expense of their Ward, the undersigned Michael Oher, [retired NFL star].”
14-page petition, filed in Shelby County, Tennessee, probate court, ‘Blind Side’ subject Oher alleges Tuohys made millions off lie, ESPN, August 14, 2023, Blind Side
The [Carney] hospital had a reputation for providing great care to Irish Catholics and not particularly good care to the Black and brown people who live in those communities now, and they painted the family medicine program as the cornerstone of an effort to rehabilitate this reputation. They said they were going to bring back inpatient pediatric care—they even had these big characters painted on the wall of what was supposed to be the peds unit—and they were going to have labor and delivery. When I interviewed, they made it seem like there was a lot of stuff that was still getting worked out because it was so new.
By the time I moved to Boston, it was just clear that none of it was happening at all. The hospital was owned by the same private equity firm that owned the manufacturer of the AR-15, and they had no interest in restoring community hospitals.
Stephanie Arnold, MD, My Life in Corporate Medicine, The American Prospect, July 31, 2023, My Life in Corporate Medicine
August 7, 2023
“[A]ccess intimacy” [is] an idea that reorients our approach from one where disabled people are expected to squeeze into able-bodied people’s world, and instead calls upon able-bodied people to inhabit our world.”
Disability-justice educator Mia Mingus, I Have a Choice to Make About My Blindness, *New York Times, August 5, 2023, About My Blindness
“To be blunt about it, the people most impacted by heat are not the kind of voting demographic that gets any politician nervous. They’re unsheltered people, poor people, agricultural and construction workers. People like Sebastian Perez are just seen as expendable. They’re not seen as humans who need to be protected. Racism is absolutely central to the government’s failure to protect vulnerable people.”
Jeff Goodell, author of The Heat Will Kill You First: Life and Death on a Scorched Planet, Racism at heart of US failure to tackle deadly heatwaves, expert warns, The Guardian, August 6, 2023, Racism at Heart
“Bathing, cooking, lifting, and moving him, cleaning him. It’s all physical. It’s a lot of sweat.”
Tony Hedgepeth, a home health aide in Richmond, VA, Heat Is Costing the U.S. Economy Billions in Lost Productivity, *New York Times, July 31, 2023, Heat Is Costing
“The truth is that the changes required probably will be very costly, and they will get passed on to employers and consumers, but if we don’t want these workers to get killed, we will have to pay that cost.”
David Michaels, who served as assistant secretary of labor at OSHA during the Obama administration and is now a professor at the George Washington School of Public Health commenting on necessary actions in response to heat emergencies, Heat Is Costing the U.S. Economy Billions in Lost Productivity, *New York Times, July 31, 2023, Heat Is Costing
“I know that statistically speaking, in 10 years, I’m gone. So, whatever I fight for now, I am not going to be the benefactor. It’ll be for the next generation.”
Elisabeth Stern, 75, a member of the KlimaSeniorinnen in Zurich, Switzerland and an avid hiker, Heat Waves Are Killing Older Women. Are They Also Violating Their Rights?, New York Times (free access), August 6, 2023, Killing Older Women
Should we find anybody abusing, harassing, maiming these older persons, I can assure you the necessary punishment would be inflicted on whoever does that.”
Joseph Motari, Kenya’s principal secretary for social protection and senior citizens affairs, BBC Africa Eye: Elderly caned at Kenya’s PCEA Thogoto Care Home for the Age, BBC News, August 6, 2023, BBC Africa Eye Elderly Caned
Looking beyond novel technology to strengthen current privacy laws may give a more holistic view of the many threats to privacy, and what freedoms need defending.
New neurotechnology is blurring the lines around mental privacy – but are new human rights the answer?, The Conversation, August 7, 2023, New neurotechnology
“Until every veteran in this country knows what is available to him or her, and has come in and filed a claim, and then we’ve awarded that claim for him or to her, I won’t be satisfied.”
Veterans Affairs Secretary Denis McDonough, Veterans see historic expansion of benefits for toxic exposure as new law nears anniversary, AP News, August 6, 2023 (updated), Historic expansion
“It’s all about opportunity and the chance for people like me and people my age to express themselves through fashion like any able-bodied person. It says a lot about who I am on the inside, and adaptive clothing allows me to do that.”
Oliver Scheier, an 18 year old who was born with muscular dystrophy, Clothes for kids with disabilities get better, but teens see a lack of fashionable options,AP News, August 4, 2023, Clothes for kids with disabilities
July 31, 2023
“We are struggling quite a bit with the staffing [for The Ride]. Which means we are scheduling trips less efficiently because we have less drivers. That has a direct impact on on-time performance, and when on-time performance is impacted, it increases call volume. Our call center is also understaffed.”
Michele] Stiehler, MBTA’s chief of paratransit services, Long a sore spot for riders with disabilities, service on the RIDE has gotten worse because of staffing shortages, *Boston Globe, July 29, 2023, Long a Sore Spot
“Twenty-year-olds can go out in 80-degree weather for hours and generally be OK. That’s not true for older adults.”
Dr. Angela Primbas, a geriatrician at U.C.L.A. Health. Heat Affects Older People More. Here’s How to Stay Safe. New York Times (free access), July 20, 2023, Heat Affects Older People
We all get hot. We all need water. We all need breaks. Lawmakers can ignore this reality because they work (on legislation like this bill) in air-conditioned offices. They drive home on roads made by the workers whose lives they are endangering. They pull inside their garages, close the door to the blistering heat and enter their comfortable homes, where their family members do not have to worry about dying of heat. It is unconscionable that in our wealthy country, we let blue-collar workers and the economically disadvantaged needlessly die in oppressive heat.
Tish Harrison Warren, Opinion Writer, Rising Heat Deaths Are Not Just About the Temperature, New York Times (free access), July 23, 2023, Rising Heat Deaths
Without sustainable interventions, increased reliance on air-conditioning will contribute to a cycle of accelerated fossil fuel burning to keep people cool as the world outside gets hotter.
As Heat Waves Intensify, Europe’s Cities Rely on Age-Old Ways to Stay Cool, New York Times, July 28, 2023, Heat Waves Intensify
Through their performances, dip hop artists not only subvert preconceived notions of music but also of Deaf culture and deafness, changing what it means for music to be heard.
Deaf rappers who lay down rhymes in sign languages are changing what it means for music to be heard, The Conversation, July 27, 2023, Deaf Rappers
So how blind you have to be to be blind? How much vision do you have to remove from the heap of sight before it becomes blindness?
Andrew Leland, Blindness isn’t a tragic binary — it’s a rich spectrum, TED Talk, Blindness Isn’t a Tragic Binary
“It’s actually really impressive to see what has been accomplished by both the state and the providers [with the Roadmap for Behavioral Health Care Reform]. . . Everyone wants it to be at its full potential now. The reality is we still have work to do.”
Karin Jeffers, president and chief executive of Clinic and Support Options, First six months of the state’s mental health overhaul reveal promise and challenges, *Boston Globe, July 27, 2023
“For too long, it’s been this idea of collaboration. That’s not the job of state survey agencies. We believe that strong enforcement, strong corrective action incentivizes change. Many of these operators are in it for the money. And until you reduce the amount of money they can suck away without repercussions, you’re not going to really change the behavior. Five-thousand-dollar fines, that doesn’t do anything to them.
“If you look at the amount of fines and you look routinely at the type of severe, endemic problems that are hurting nursing home residents, it’s pathetic. … There’s no real incentive to change. What we’re hearing is there’s just this huge decline in quality of care across the country. … And the fact is, it’s made worse by poor enforcement.”
Sam Brooks, The Consumer Voice’s director of public policy, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“Imagine if [twelve] day care centers in the first half of this year had been found to be putting children at risk of serious injury or death. Imagine what kind of reforms would be happening. We need to see this as an opportunity to rethink how we provide care to older adults and people with disabilities.”
Anna Doroghazi, associate state director of advocacy and outreach for the AARP in Connecticut, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“It makes me feel sick. People deserve better. Everybody deserves better care than this.”
Anna Doroghazi, associate state director of advocacy and outreach for the AARP in Connecticut, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“My first reaction is I want to cry. I cannot grasp that this is happening [in nursing homes] in our communities. It’s beyond comprehension. I just know we have to react. We have to work on this.”
Rep. Jane Garibay, a co-chair of the Connecticut legislature’s Aging Committee, CT nursing home conditions raise alarms as inspections lag, CT Mirror, July 30, 2023, CT Nursing Home Conditions Raise Alarms
“[Gouverneur Morris, a founding father of America, who was disabled due to a severely impaired right arm and an amputated left leg,] had a different lived experience than [other Founding Fathers] because of his embodiment and I think we should be able to read some of the things he’s done with that in mind. I don’t want to essentialize Morris as only a disabled person because he was so much more than that. He was amazing. “But in how we think about how he came to be that kind of person, we need to think about his embodiment.”
Jennifer W. Reiss, an attorney in London with a PhD in history who has a form of cerebral palsy, The disabled Founding Father who put the ‘United’ in ‘United States’, *Washington Post, July 31, 2023 (updated), Disabled Founding Father
“We are very full. We have everything from heat cramps to heat stroke and death.”
Dr. Kara Geren, an emergency-medicine doctor at Valleywise Health Medical Center in central Phoenix, Phoenix’s Month in Hell: 31 Days of Extreme Heat Tests the City, *New York Times, July 31, 2023, Phoenix’s Month in Hell
[S]taffing in the [nursing home] sector is still a significant burden on skilled nursing operators and is limiting additional admissions in many markets around the country.”
Skilled nursing occupancy dips: NIC, McKnight’s Senior Housing News, June 6, 2023, Skilled Nursing Occupancy Dips
“This program has been wildly successful and effective in keeping people in their homes and has helped avert the tsunami of evictions in the commonwealth that many have been concerned about since the 2020 pandemic started.”
State Representative Aaron Michlewitz, Chair, House Ways and Means Committee, Legislature Reviving Program to Prevent Evictions, *State House News, July 31, 2023, Reviving Eviction Protection
July 24, 2023
“Too often, fear of staff retaliation – the fear itself – prevents residents from voicing concerns and from receiving the care and services to which they are entitled. Ultimately, this inaction leads to unnecessary emotional, psychological, and physical harm to vulnerable residents.”
“They Make You Pay”, Long Term Care Community Coalition, June 2023, “They Make You Pay.”
“Staff acted like we were non-people. They don’t even acknowledge that we are human.”
Interviewed nursing home resident, “They Make You Pay”, Long Term Care Community Coalition, June 2023, “They Make You Pay.”
“Some staff treat residents like gold, but others are just not nice.”
An Illinois nursing home resident to state surveyor, “They Make You Pay”, Long Term Care Community Coalition, June 2023, “They Make You Pay.”
The enormous vacuum created by deinstitutionalization has been a calamity for both the mentally ill and society at large. The role once occupied by the asylum has been transferred to the institutions perhaps least able to deal with mental health issues—prisons and jails. The number of inmates in the U.S. in 1955 was 185,000; today, that figure is 1,900,000.
David Oshinsky, It’s Time to Bring Back Asylums, Wall Street Journal, Time to Bring Back Asylums (free access), July 21, 2023
“This study demonstrates the profound effect of early detection of influenza in long-term care facilities. Nursing homes are collections of very vulnerable individuals, so anything we can do to protect them is very important.”
Dr. Jonathan Temte, professor of family medicine and community health at the University of Wisconsin School of Medicine and Public Health, Study Reveals Importance of Early Influenza Detection for Nursing Home Residents, Skilled Nursing News, July 21, 2023, Early Influenza Detection
The U.S. health-care system is costly to families and the country. Morally, improving access is the right thing to do for Americans in pain. Financially, it makes sense, too.
Health insurance is keeping your mind sick and wallet empty, *Washington Post, July 21, 2023, Keeping Your Mind Sick
Health disparities, or preventable differences in the burden of chronic disease and health outcomes, are a driving force behind mental health inequities. Our health equity problem is of our own making, created by artificial caste distinctions, persistent racism, and how we structure our economy and investments in health care; the status of health care disparities is determined, largely, in the ways that the private sector either confronts them or looks away.
Addressing The Mental Health Equity Crisis: Can The Private Sector Lead?, Health Affairs Forefront, July 19, 2023, Mental Health Equity Crisis
So, by virtue of carving out a form of medical care for poor people – which is seen as welfare or a “handout” – the system can exploit them for financial gain while denying them the quality of care every other citizen deserves even though every form of healthcare received by Americans is heavily subsidized in some way or other by government.
Dave Kingsley, Managed Care & Privatization was Supposed to Save Taxpayers Money & Work Better than Government Administered Medical Care, but That’s Not What is Happening. Tallgrass Economics, July 23, 2023, Managed Care & Privatization
Three factors raise concerns that some people enrolled in Medicaid managed care may not be receiving all medically necessary health care services intended to be covered: (1) the high number and rates of denied prior authorization requests, (2) the limited oversight of prior authorization denials in most States, and (3) the limited access to external medical reviews.
High Rates of Prior Authorization Denials by Some Plans and Limited State Oversight Raise Concerns About Access to Care in Medicaid Managed Care, U. S. Department of Health and Human Services Office of Inspector General, July 17, 2023, Complete Report on Authorization Denials
July 17, 2023
Nearly all facilities would meet a requirement of 2.5 or fewer HPRD [hours per resident day] and 85% of facilities would meet a requirement of 3.0 HPRD, but close to half (45%) of all nursing facilities would not meet a 3.5 HPRD requirements, and only 29% would meet an HPRD of 4.0.
What Share of Nursing Facilities Would Meet Possible New Staffing Requirements?, Kaiser Family Foundation, July 14, 2023, New Staffing Requirements
Ultimately the dead may teach the living, but it is the duty of the living to be the voice advocating for the dead.
When it comes to donating bodies for research, the living must advocate for the dead, *Boston Globe, July 15, 2023, Living must advocate for the dead
The risk of natural disasters is everywhere (even in the most resilient places). People will no longer just have to prepare for intensified versions of the natural disasters they know, but they will also have to consider the possibility of new types of disasters — floods, storms, heat waves, droughts, and fires — impacting their community.
There’s no such thing as a disaster-resistant place anymore, Vox, July 13, 2023, No such thing as disaster-resistant place
“We are still relatively early on in the process and haven’t yet seen the real steep increase in newly eligible people who are reaching their termination date with MassHealth, but we anticipate those more substantial waves are coming soon.”
Massachusetts Health . Connector Executive Director Audrey Gasteier. On MassHealth Shift, “Substantial Waves” Still In Distance, State House News, July 13, 2023, Substantial Waves
“You can say with some kind of degree of confidence what the demographics will look like. What the society will look like depends enormously on policy choices and behavioral change.”
Philip O’Keefe, Director of the Aging Asia Research Hub at the ARC Center of Excellence in Population Aging Research, How a Vast Demographic Shift Will Reshape the World, *New York Times, July 16, 2023, Vast Demographic Shift
[Prior to the passage of the Americans with Disabilities Act, h]aving a disability was considered a medical problem to be solved rather than an identity to be protected under non-discrimination laws.
How the Americans with Disabilities Act transformed a country, National Geographic, July 30, 2020, ADA Transformed a Country
“[The Americans with Disability Act] is the world’s first declaration of equality for people with disabilities. It will proclaim to America and to the world that people with disabilities are fully human; that paternalistic, discriminatory, segregationist attitudes are no longer acceptable; and that henceforth people with disabilities must be accorded the same personal respect and the same social and economic opportunities as other people.”
Justin Dart, vice chair of the National Council on Disability known as the “Godfather of the ADA”, How the Americans with Disabilities Act transformed a country, National Geographic, July 30, 2020, ADA Transformed a Country
The history of wheelchair development “shows disabled people as active agents and directing their own lives,”—lives that are made more mobile and independent.
Nicholas Watson, Professor of Disability Studies and Director of the Centre for Disability Research at the University of Glasgow, How the wheelchair opened up the world to millions of people, *National Geographic, July 14, 2023, Wheelchair opened up the world
“As a user of the DOT and MBTA systems herself, Dr. [Lisa] Iezzoni will bring a critical perspective to [the Massachusetts Department of Transportation’s] board [of directors] that will help us ensure that our transportation system is accessible for people with disabilities.”
Gov. Maura Healey, Healey Fills MassDOT Openings with Transpo Veterans, *State House News, June 28, 2023, Healey Fills DOT Openings
“[Dr. Lisa Iezzoni] has done an enormous amount to put disability issues on the map, to uncover bias against our community. We are really lucky to have her.”
Colin Killick, executive director, Disability Policy Consortium, ‘We are really lucky to have her’: For disability community, historic MassDOT board hire Lisa Iezzoni inspires confidence, *Boston Globe, June 28, 2023, Lucky to Have Her
July 10, 2023
“When I think about something like Alzheimer’s disease, I think of it as a disease of autonomy. It affects people’s ability to make decisions about what’s important to them. One of my big concerns is that when we look at tools like guardianship, we’re stripping people of decision-making authority prematurely. . . I think we should really keep people empowered as long as possible — and [supportive decision-making] is a way of doing that.”
Emily Largent, a professor of medical ethics and health policy at the University of Pennsylvania and proponent of supported decision-making, How can seniors with cognitive impairment keep their independence? Pittsburgh Post-Gazette, July 8, 2023, Cognitive Impairment Independence
Created “Out of Thin Air”: The Shared Clinical Decision Making (SCDM) Recommendation Hinders Vaccine Access
With the Word ‘May’, ACIP Leaves Seniors Vulnerable To RSV This Winter, Health Affairs, July 5, 2023, ACIP Leaves Seniors Vulnerable
“This confirmatory study verified that [Leqembi] is a safe and effective treatment for patients with Alzheimer’s disease.”
Dr. Teresa Buracchio, the Food and Drug Administration’s neurology drug director, First Alzheimer’s drug to slow disease progression gets full FDA approval, triggering broader Medicare coverage, CNN Health, July 6, 2023. First Alzheimer’s Drug to Slow Disease
“Getting that insurance coverage is incredibly significant … because having a treatment is awesome, but I can’t afford to pay the $26,000 cost [for Leqembi].”
Joe Montminy, 59, who was diagnosed with younger-onset Alzheimer’s in his early 50s, First Alzheimer’s drug to slow disease progression gets full FDA approval, triggering broader Medicare coverage, CNN Health, July 6, 2023, First Alzheimer’s Drug to Slow Disease
“You’ve got small benefits and a certain risk for serious adverse events, and that has to be balanced. If its efficacy were greater, we would not be talking about adverse events as much because we would see a clear benefit. I think many people will see this and say it’s not worth the effort, it’s not worth twice-a-month infusions.”
Dr. Lon Schneider, director of the California Alzheimer’s Disease Center at the University of Southern California, who said he will prescribe Leqembi to carefully evaluated patients, New Federal Decisions Make Alzheimer’s Drug Leqembi Widely Accessible, *New York Times, July 6, 2023, Leqembi Widely Accessible
“It’s really the first time that you have domestic workers, home care, child care, early educators, nursing home workers all together to say, ‘Our jobs are the jobs of the future. Our work is here to stay.’”
Ai-jen Poo envisioned the National Domestic Workers Alliance (NDWA), Domestic workers are organizing for better working conditions nationwide, The Hill, July 9, 2023, Domestic Workers Organizing
“It is incredibly sad to be in this situation and have so little capacity to absorb the need.”
Libby Bennett of Groundworks Collaborative, which runs two shelters in Brattleboro, a city in southern Vermont, Last days at the Cortina: Homeless left adrift as covid-era housing ends, *Washington Post, July 7, 2023, Last Days at the Cortina
“A joke about dropping acid at Woodstock ‘makes me colorful’. Crushing OxyContin and snorting it is not colorful.”
Dr. Keith Humphreys, a psychologist and addiction researcher at the Stanford University School of Medicine, commenting on the rise of substance use issues regarding older adults, Substance Abuse Is Climbing Among Senior, New York Times (free access), July 9, 2023, Substance Use Climbing Among Older Adults
Americans need a collective change in mindset about energy access. That should start with a principle that all people should have access to critical energy services and that utilities should only shut off service to customers as a last resort, especially during health-compromising weather events.
America faces a power disconnection crisis amid rising heat: In 31 states, utilities can shut off electricity for nonpayment in a heat wave, The Conversation, July 5, 2023, America Faces Power Disconnect
June 26, 2023
“You have to keep moving. I intend to do this until I die.”
Virginia Oliver, 103 year-old who has been lobstering in Maine for 95 years, ‘Lobster Lady’ turns 103, has been hauling traps for 95 years, *Washington Post, June 21, 2023, Lobster Lady
“I didn’t think any deep thoughts. I didn’t figure it all out. I didn’t come out like, woohoo, a Zen master, [b]ut it cleansed my palate. When I came out, I felt better. I felt confident. I felt clearer. I felt I had accomplished something.”
Cathy Brennan, 62 year old solo kayaker, Seeking adventure, a 62-year-old woman kayaks the entire Potomac solo, *Washington Post, June 23, 2023, Seeking Adventure
Anyone who has a loved one who must go to or live in a nursing home would probably agree that it is unsatisfactory to have them there. If you want change, you need to bring this to the repeated attention of your elected representatives and to ask directly for the much-needed changes.
The Call For Nursing Home Reform: Will It Have Any Effect?, Forbes, January 6, 2023, Call For Nursing Home Reform
“It’s our job to keep people safe. We can leave someone with wounds that clearly look infected and is sitting in feces and urine. Do you think they have a right to stay there? Maybe. But do we have a responsibility as social service providers, and social workers, and ultimately as human beings to look out for this person, because if we don’t, who’s going to do it?”
Juan Rivera, BronxWorks’s outreach director, He Was Handcuffed and Hospitalized. Now He’s on Track for Housing. *New York Times, June 25, 2023, He Was Handcuffed
“There are some states that don’t particularly mind shedding folks off of their Medicaid rolls and aren’t particularly concerned where people land. That’s obviously not the case with Massachusetts. We have 97 percent of our residents in coverage. We don’t want to see backsliding on that. We don’t want to see people losing their coverage and becoming uninsured.”
Audrey Morse Gasteier, executive director of the Massachusetts Health Connector, Medicaid redetermination process off to fast start, CommonWealth Daily Download, June 20, 2023, Medicaid Redetermination Fast Start
“I’m hearing a lot about in-law apartments, accessory dwellings, tiny homes.”
State Rural Director Anne Gobi, alluding to possible solutions to the lack of housing, New role as director of rural affairs means new challenges for Sen. Anne Gobi of Spencer, Worcester Telegram and Gazette, June 24, 2023, Gobi’s New Role
June 12, 2023
The pandemic left millions of people who suffer with lingering symptoms. To grapple with this legacy, we must continue research to find answers to a series of biomedical questions. First among them is to establish a definition of “long covid” and identify the most common symptoms.
The mystery of long covid needs to be unraveled. We’re getting closer. *Washington Post, June 11, 2023, Mystery of Long Covid
“One of the big take-aways from this study [about long Covid] is [that] long COVID is not just one syndrome; it’s a syndrome of syndromes.”
Dr. Andrea Foulkes of the RECOVER Data Resource Core, Harvard Medical School, and Massachusetts General Hospital, Toward a deeper understanding of long COVID, National Institute of Health, June 6, 2023, Deeper Understanding of Long Covid
“We’re not going to get profiteering out of the business until we make changes.”
Larry Atkins, chief policy officer of the National Partnership for Healthcare and Hospice Innovation, which represents about 100 nonprofit hospices. Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice
“It’s clear we need to strengthen oversight, but we must also modernize payment programs to meet the needs of patients and make it harder for people to game the system.”
Representative Earl Blumenauer, an Oregon Democrat who has long been involved in end-of-life legislation, Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice
“[Hospice is] a small segment of the health care system, but it’s such an important one. If you screw it up, people don’t forget.”
Dr. Joan Teno, a Brown University health policy researcher, Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice
[T]he number of people with I/DD receiving Medicaid home and community-based services and living with family has increased by 143% between 1998 and 2018. An estimated 1 million households in the U.S. include an adult with I/DD living with and supported by an aging caregiver, and this number is growing.
CMS Releases Resources on Supporting Adults with I/DD and Their Aging Caregivers, Administration on Community Living, June 12, 2023, Aging Caregivers
“When state survey agencies do not have adequate staffing to visit and investigate the complaints, residents may be left at the mercy of non-caring facility staff and ownership who are not held accountable … This negatively impacts not only the physical well-being of residents, but their dignity and emotional health as well.”
Victor Orija, North Carolina’s long-term care ombudsman, Inadequate oversight: Lack of inspectors leaves some nursing home complaints unaddressed for months, NC Health News, June 12, 2023, inadequate oversight
“It’s not local people who own these buildings anymore. Even the administrators of these facilities feel like they can’t make changes or make a difference because of the out-of-state ownership.”
Hillary Kaylor, nursing home ombudsman in Mecklenburg County, North Carolina, Inadequate oversight: Lack of inspectors leaves some nursing home complaints unaddressed for months, NC Health News, June 12, 2023, inadequate oversight
On June 8, 2023, the United States Supreme Court granted long-term care residents the right to sue state-run facilities under federal laws. This opinion creates a new line of litigation against state long-term care facilities.
The U.S. Supreme Court Expands Lawsuit Options Against State Long Term Care Facilities, JD Supra, June 9, 2023, Expands Lawsuit Options
Ownership of many nursing facilities, especially the worst ones, has become a shell game subject to high-frequency shifts of ownership and changing facility names.
The game exceeds the demonstrated ability of governments to track those changes for purposes of public information. That game has to at least complicate regulation if not thwart it. . .
A nursing home that routinely loses money, assuming the financial reporting is accurate, which is a known problem in facilities owned by some private equity firms, is a risk regardless of the latest CMS star ratings.
Scandal in Plain Sight – Virginia’s Failed Regulation of Law-Avoiding Nursing Home Owners, Bacon’s Revolt, June 10, 2023, Scandal in Plain Sight
June 5, 2023
The key questions asked in 1990 remain in 2023: How will we serve and support aging [adults] and [persons] with disabilities and give them the respect and quality of care they deserve? Will we serve people where they prefer — in their own homes and communities — or will we serve them in large institutional settings that take away their identities and their dignity? What will be done to ensure the presence of a high-quality and stable workforce? Who will pay, and how much, for the services needed?
Opinion: The crisis in nursing home care is becoming a catastrophe, *Des Moines Register, June 4, 2023, Crisis Becoming a Catastrophe
What has happened in the 33 years since the call for urgent action? Shockingly and frustratingly, not much. Presidents, governors, and legislators have been unwilling to take bold action. Instead, they have chosen to convene more commissions, committees, task forces, and blue-ribbon panels, all of which produced similarly startling reports that ended with the same urgent call to act.
Opinion: The crisis in nursing home care is becoming a catastrophe,* Des Moines Register, June 4, 2023, Crisis Becoming a Catastrophe
Lack of action has allowed things to only get worse.
Results of this study suggest widespread underreporting of major injury falls and pressure ulcers across US nursing homes, and underreporting was associated with the racial and ethnic composition of a facility.
Underreporting of Quality Measures and Associated Facility Characteristics and Racial Disparities in US Nursing Home Ratings, JAMA Network, May 23, 2023, Underreporting of Quality Measures and Associated Facility Characteristics and Racial Disparities in US Nursing Home Ratings
“Having family members be workers does help cover a gap given the workforce issues, but then who is proving respite to that family member? … It definitely covers a gap, but there is a quality of life for that caregiver that may become important and affect the participant.”
Louisiana State Official, Emerging Respite Care Strategies in Medicaid Home and Community-Based Services Waivers for Older Adults, Adults with Physical Disabilities, and their Family Caregivers, National Academy for State Health Policy, May 26, 2023, Emerging Respite Care Strategies in Medicaid Home and Community-Based Services Waivers for Older Adults, Adults with Physical Disabilities, and their Family Caregivers
The debt ceiling agreement would put almost 750,000 older adults aged 50-54 at risk of losing food assistance through an expansion of the existing, failed SNAP work-reporting requirement.
Debt Ceiling Agreement’s SNAP Changes Would Increase Hunger and Poverty for Many Older Low-Income People; New Exemptions Would Help Some Others, Center on Budget and Policy Priorities, May 31, 2023, jeopardize SNAP food assistance for 750,000 older adults ages 50-54
Ai-jen Poo [president of the National Domestic Workers Alliance and executive director of Caring Across Generations]: So, every year, 4 million babies born, every year, 4 million people turn 65 and live longer than ever. And who we have in the middle is us, and we’re both managing care at a time when we have less of it. And it’s that panini effect, some people use the sandwich generation metaphor. I find sandwich to be a little gentle as a metaphor for this dynamic that we’re kind of —
Chris Hayes: You mean you want to think about being pressed on a hot grill is why you used panini.
Ai-jen Poo: I mean, that’s how it feels like.
The Care Economy with Ai-jen Poo [president of the National Domestic Workers Alliance and executive director of Caring Across Generations], Why Is This Happening? (Podcast and transcript), May 31, 2023, The Care Economy
Ask yourself, what ought to be the primary goal of American health care? To my mind it is this: to maintain and improve individual and population health most effectively and efficiently. And if that is correct, there are two critical questions we all need to ask: (1) Why are we failing so miserably to achieve this goal? and (2) Why are doctors and other health care professionals willing to go along with this dysfunctional system?
America’s Broken Health Care: Diagnosis and Prescription, Imprimis (A publication of Hillsdale College), February 2, 2023, America’s Broken Health Care
Oliver Wendell Holmes said in 1869, “The state of medicine is an index of the civilization of an age and country—one of the best, perhaps, by which it can be judged.” Medical science is a wonderful gift, but we have to use that gift wisely so that it serves the American people by providing the best and most efficient care. We can’t allow it to be held hostage by the medical-industrial complex.
America’s Broken Health Care: Diagnosis and Prescription, Imprimis (A publication of Hillsdale College), February 2, 2023, America’s Broken Health Care
[Holland Kaplan, a physician and bioethicist] has written about performing chest compressions on a frail, elderly patient and feeling his ribs crack like twigs. She found herself wishing she were “holding his hand in his last dying moments, instead of crushing his sternum.” She told me that she’s had nightmares about it. She described noticing his eyes, which were open, while she was performing CPR. Blood spurted out of his endotracheal tube with each compression.
“I felt like I was doing harm to him,” she told me. “I felt like he deserved a more dignified death.” It’s no wonder that many doctors are not fond of CPR, and choose not to receive it themselves.
For many, a ‘natural death’ may be preferable to enduring CPR, NPR Shots, May 29. 2023, A Natural Death
“Give people something they can say yes to.” Physicians have the knowledge and experience to guide patients in choosing measures they may benefit from, declining those that may harm, and aligning interventions with their wishes and values. The most important thing, instead of always taking action, is to ask.
Holland Kaplan, a physician and bioethicist, For many, a ‘natural death’ may be preferable to enduring CPR, NPR Shots, May 29. 2023, A Natural Death