Quotes 2023 January – June

June 26, 2023

“You have to keep moving. I intend to do this until I die.”

Virginia Oliver, 103 year-old who has been lobstering in Maine for 95 years, ‘Lobster Lady’ turns 103, has been hauling traps for 95 years, *Washington Post, June 21, 2023, Lobster Lady

“I didn’t think any deep thoughts. I didn’t figure it all out. I didn’t come out like, woohoo, a Zen master, [b]ut it cleansed my palate. When I came out, I felt better. I felt confident. I felt clearer. I felt I had accomplished something.”

Cathy Brennan, 62 year old solo kayaker,  Seeking adventure, a 62-year-old woman kayaks the entire Potomac solo, *Washington Post, June 23, 2023, Seeking Adventure

Anyone who has a loved one who must go to or live in a nursing home would probably agree that it is unsatisfactory to have them there. If you want change, you need to bring this to the repeated attention of your elected representatives and to ask directly for the much-needed changes.

The Call For Nursing Home Reform: Will It Have Any Effect?, Forbes, January 6, 2023, Call For Nursing Home Reform

“It’s our job to keep people safe. We can leave someone with wounds that clearly look infected and is sitting in feces and urine. Do you think they have a right to stay there? Maybe. But do we have a responsibility as social service providers, and social workers, and ultimately as human beings to look out for this person, because if we don’t, who’s going to do it?”

Juan Rivera, BronxWorks’s outreach director,  He Was Handcuffed and Hospitalized. Now He’s on Track for Housing. *New York Times, June 25, 2023, He Was Handcuffed

“There are some states that don’t particularly mind shedding folks off of their Medicaid rolls and aren’t particularly concerned where people land. That’s obviously not the case with Massachusetts. We have 97 percent of our residents in coverage. We don’t want to see backsliding on that. We don’t want to see people losing their coverage and becoming uninsured.”

Audrey Morse Gasteier, executive director of the Massachusetts Health Connector,  Medicaid redetermination process off to fast start, CommonWealth Daily Download, June 20, 2023, Medicaid Redetermination Fast Start

“I’m hearing a lot about in-law apartments, accessory dwellings, tiny homes.”

State Rural Director Anne Gobi, alluding to possible solutions to the lack of housing,  New role as director of rural affairs means new challenges for Sen. Anne Gobi of Spencer, Worcester Telegram and Gazette, June 24, 2023, Gobi’s New Role

June 12, 2023

The pandemic left millions of people who suffer with lingering symptoms. To grapple with this legacy, we must continue research to find answers to a series of biomedical questions. First among them is to establish a definition of “long covid” and identify the most common symptoms.

The mystery of long covid needs to be unraveled. We’re getting closer. *Washington Post, June 11, 2023, Mystery of Long Covid

“One of the big take-aways from this study [about long Covid] is [that] long COVID is not just one syndrome; it’s a syndrome of syndromes.”

Dr. Andrea Foulkes of the RECOVER Data Resource Core, Harvard Medical School, and Massachusetts General Hospital,  Toward a deeper understanding of long COVID, National Institute of Health, June 6, 2023, Deeper Understanding of Long Covid

“We’re not going to get profiteering out of the business until we make changes.”

Larry Atkins, chief policy officer of the National Partnership for Healthcare and Hospice Innovation, which represents about 100 nonprofit hospices. Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice

“It’s clear we need to strengthen oversight, but we must also modernize payment programs to meet the needs of patients and make it harder for people to game the system.”

Representative Earl Blumenauer, an Oregon Democrat who has long been involved in end-of-life legislation, Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice

“[Hospice is] a small segment of the health care system, but it’s such an important one. If you screw it up, people don’t forget.”

Dr. Joan Teno, a Brown University health policy researcher, Hospice Is a Profitable Business, but Nonprofits Mostly Do a Better Job, New York Times (free access), June 10, 2023, Hospice

[T]he number of people with I/DD receiving Medicaid home and community-based services and living with family has increased by 143% between 1998 and 2018. An estimated 1 million households in the U.S. include an adult with I/DD living with and supported by an aging caregiver, and this number is growing.

CMS Releases Resources on Supporting Adults with I/DD and Their Aging Caregivers, Administration on Community Living, June 12, 2023, Aging Caregivers

“When state survey agencies do not have adequate staffing to visit and investigate the complaints, residents may be left at the mercy of non-caring facility staff and ownership who are not held accountable … This negatively impacts not only the physical well-being of residents, but their dignity and emotional health as well.”

Victor Orija, North Carolina’s long-term care ombudsman, Inadequate oversight: Lack of inspectors leaves some nursing home complaints unaddressed for months, NC Health News, June 12, 2023, inadequate oversight

“It’s not local people who own these buildings anymore. Even the administrators of these facilities feel like they can’t make changes or make a difference because of the out-of-state ownership.”

Hillary Kaylor, nursing home ombudsman in Mecklenburg County, North Carolina, Inadequate oversight: Lack of inspectors leaves some nursing home complaints unaddressed for months, NC Health News, June 12, 2023, inadequate oversight

On June 8, 2023, the United States Supreme Court granted long-term care residents the right to sue state-run facilities under federal laws. This opinion creates a new line of litigation against state long-term care facilities.

The U.S. Supreme Court Expands Lawsuit Options Against State Long Term Care Facilities, JD Supra, June 9, 2023, Expands Lawsuit Options

Ownership of many nursing facilities, especially the worst ones, has become a shell game subject to high-frequency shifts of ownership and changing facility names.
The game exceeds the demonstrated ability of governments to track those changes for purposes of public information. That game has to at least complicate regulation if not thwart it. . .

A nursing home that routinely loses money, assuming the financial reporting is accurate, which is a known problem in facilities owned by some private equity firms, is a risk regardless of the latest CMS star ratings.

Scandal in Plain Sight – Virginia’s Failed Regulation of Law-Avoiding Nursing Home Owners, Bacon’s Revolt, June 10, 2023, Scandal in Plain Sight

June 5, 2023

The key questions asked in 1990 remain in 2023: How will we serve and support aging [adults] and [persons] with disabilities and give them the respect and quality of care they deserve? Will we serve people where they prefer — in their own homes and communities — or will we serve them in large institutional settings that take away their identities and their dignity? What will be done to ensure the presence of a high-quality and stable workforce? Who will pay, and how much, for the services needed?

Opinion: The crisis in nursing home care is becoming a catastrophe, *Des Moines Register, June 4, 2023, Crisis Becoming a Catastrophe

What has happened in the 33 years since the call for urgent action? Shockingly and frustratingly, not much. Presidents, governors, and legislators have been unwilling to take bold action. Instead, they have chosen to convene more commissions, committees, task forces, and blue-ribbon panels, all of which produced similarly startling reports that ended with the same urgent call to act.

Opinion: The crisis in nursing home care is becoming a catastrophe,* Des Moines Register, June 4, 2023, Crisis Becoming a Catastrophe

Lack of action has allowed things to only get worse.

Results of this study suggest widespread underreporting of major injury falls and pressure ulcers across US nursing homes, and underreporting was associated with the racial and ethnic composition of a facility.

Underreporting of Quality Measures and Associated Facility Characteristics and Racial Disparities in US Nursing Home Ratings, JAMA Network, May 23, 2023, Underreporting of Quality Measures and Associated Facility Characteristics and Racial Disparities in US Nursing Home Ratings

“Having family members be workers does help cover a gap given the workforce issues, but then who is proving respite to that family member? … It definitely covers a gap, but there is a quality of life for that caregiver that may become important and affect the participant.”

Louisiana State Official,  Emerging Respite Care Strategies in Medicaid Home and Community-Based Services Waivers for Older Adults, Adults with Physical Disabilities, and their Family Caregivers, National Academy for State Health Policy, May 26, 2023, Emerging Respite Care Strategies in Medicaid Home and Community-Based Services Waivers for Older Adults, Adults with Physical Disabilities, and their Family Caregivers

The debt ceiling agreement would put almost 750,000 older adults aged 50-54 at risk of losing food assistance through an expansion of the existing, failed SNAP work-reporting requirement.

Debt Ceiling Agreement’s SNAP Changes Would Increase Hunger and Poverty for Many Older Low-Income People; New Exemptions Would Help Some Others, Center on Budget and Policy Priorities, May 31, 2023, jeopardize SNAP food assistance for 750,000 older adults ages 50-54

Ai-jen Poo [president of the National Domestic Workers Alliance and executive director of Caring Across Generations]: So, every year, 4 million babies born, every year, 4 million people turn 65 and live longer than ever. And who we have in the middle is us, and we’re both managing care at a time when we have less of it. And it’s that panini effect, some people use the sandwich generation metaphor. I find sandwich to be a little gentle as a metaphor for this dynamic that we’re kind of —

Chris Hayes: You mean you want to think about being pressed on a hot grill is why you used panini.

Ai-jen Poo: I mean, that’s how it feels like.

The Care Economy with Ai-jen Poo [president of the National Domestic Workers Alliance and executive director of Caring Across Generations], Why Is This Happening? (Podcast and transcript), May 31, 2023, The Care Economy

Ask yourself, what ought to be the primary goal of American health care? To my mind it is this: to maintain and improve individual and population health most effectively and efficiently. And if that is correct, there are two critical questions we all need to ask: (1) Why are we failing so miserably to achieve this goal? and (2) Why are doctors and other health care professionals willing to go along with this dysfunctional system?

America’s Broken Health Care: Diagnosis and Prescription, Imprimis (A publication of Hillsdale College), February 2, 2023, America’s Broken Health Care

Oliver Wendell Holmes said in 1869, “The state of medicine is an index of the civilization of an age and country—one of the best, perhaps, by which it can be judged.” Medical science is a wonderful gift, but we have to use that gift wisely so that it serves the American people by providing the best and most efficient care. We can’t allow it to be held hostage by the medical-industrial complex.

America’s Broken Health Care: Diagnosis and Prescription, Imprimis (A publication of Hillsdale College), February 2, 2023, America’s Broken Health Care

[Holland Kaplan, a physician and bioethicist] has written about performing chest compressions on a frail, elderly patient and feeling his ribs crack like twigs. She found herself wishing she were “holding his hand in his last dying moments, instead of crushing his sternum.” She told me that she’s had nightmares about it. She described noticing his eyes, which were open, while she was performing CPR. Blood spurted out of his endotracheal tube with each compression.

“I felt like I was doing harm to him,” she told me. “I felt like he deserved a more dignified death.” It’s no wonder that many doctors are not fond of CPR, and choose not to receive it themselves.

For many, a ‘natural death’ may be preferable to enduring CPR, NPR Shots, May 29. 2023, A Natural Death

“Give people something they can say yes to.” Physicians have the knowledge and experience to guide patients in choosing measures they may benefit from, declining those that may harm, and aligning interventions with their wishes and values. The most important thing, instead of always taking action, is to ask.

Holland Kaplan, a physician and bioethicist, For many, a ‘natural death’ may be preferable to enduring CPR, NPR Shots, May 29. 2023, A Natural Death

May 29, 2023

“People really want to be able to depend on a job, and to be able to invest in it and respect is a huge thing — how much you feel the respect of the people around you.”

Caroline Suh, director of the Netflex film  Working: What We Do All Day, ‘Working: What We Do All Day’ Explores What a ‘Good’ Job Actually Is In a new limited series, Tudum, May 17, 2023, What a Good Job Is

[Residential care] facilities “shouldn’t have it both ways. You can’t on one hand say: ‘Oh, we’re an alternative to nursing facilities,’” and then when something bad happens say: “Well, we can’t be expected to have expertise on that stuff. We’re a social facility. We’re a nonmedical model.’”

Eric Carlson, director of long-term services and support advocacy at Justice in Aging,  As Residential Care Homes Expand in Maine, Seniors Don’t Always Get the Care They Need, ProPublica, May 21, 2023, Residential care homes in Maine

“The law establishes mechanisms for at least a moderate review of the character and competence of an applicant [for ownership of a nursing home. The failure to provide complete information on a provider’s past performance fundamentally undermines the review process.”

Richard Mollot, director of the Long-Term Care Community Coalition in New York,  How N.Y.’s Biggest For-Profit Nursing Home Group Flourishes Despite a Record of Patient Harm, Gray Panthers Political Action Committee, August 19, 2022,

“These [nursing home] corporations are engaged in buying and selling of real estate with very favorable tax rewards. The corporations can practice medicine and also profit from Medicare, Medicaid, and other programs that can be hijacked for the corporation’s benefit rather than for the benefit of those in their care.”

Gray Panthers’ Statement on the American Nursing Home System: “Restructure the Industry and Defund the Existing System.” Tallgrass Economics, May 27, 2023, Restructure the NH Industry

The truth is that the federal and state governments allow for a charade in which facility-specific costs are submitted without any clarity about cash flowing to holding companies and parent corporations. We don’t really know how much Medicaid and Medicare revenue in the privatized nursing home system is extracted for dividends, and executive pay.

David Kingsley, The State of Nursing Home Financial Reporting in Post Truth America, Tallgrass Economics, May 24, 2023, Financial Reporting Post Truth America

May 22, 2023

“We see [minimum staffing requirements] as probably the most significant increase in protections for residents in decades. It might very well be the most important nursing home reform really since nursing homes were invented.”

Sam Brooks, director of public policy for the National Consumer Voice for Quality Long-Term Care, Biden’s nursing home staff mandates expected soon,*The Washington Post, May 9, 2023, Biden’s nursing home staffing mandates

“While we appreciate CMS taking steps to implement this long overdue rule, which establishes requirements for the disclosure of information about the owners and operators of Medicare skilled nursing facilities and Medicaid nursing facilities, we believe that certain provisions of the proposed rule could be strengthened for the benefit of patients. Specifically, we urge you to clarify ownership definitions, establish strong auditing and enforcement measures, and ensure that comprehensive reporting information is made available to the public in an easily searchable format. Increased transparency will empower older adults, their families, researchers, and health care providers to identify nursing homes that provide excellent care, while at the same time hold bad actors accountable. To prevent nursing homeowners from prioritizing profits over patients, these data will give CMS the tools to identify waste, fraud, and abuse of federal Medicare and Medicaid dollars.” 

Sen. Elizabeth Warren (D-MA), Sen. Charles Grassley (R-IA), Sen. Bob Casey (D-PA), Rep. Lloyd Doggett (D-TX), and Katie Porter (D-CA), Chuck Grassley (newsletter), May 19, 2023, Warren, Grassley Lead the Call for Greater Transparency in Nursing Home Ownership, Warren, Grassley Lead Call

Though new cases have not since reached [the] peak [seen in 2021], the impacts of the pandemic on Massachusetts and its health care system persist today. CHIA will continue to monitor these trends in the coming years.

Annual Report on the Performance of the Massachusetts Health Care System, Center for Health Information and Analysis, March 2023

So, while many of these nursing homes continue to claim they cannot afford to raise wages to increase staffing, there is plenty of evidence to show they can. . . What’s more, this crisis is rooted in the systemic racism of our care infrastructure. More than half of CNAs are people of color, and 90 percent are women. Yet despite nursing homes receiving billions of dollars from the Provider Relief Fund and other COVID-19 funding, real wages for CNAs actually declined from 2020 to 2021.

Rep. Steven Horsford (D-Nev.) and SEIU President Mary Kay Henry, Why we must care for our caregivers and address the nursing home staffing crisis, The Hill, May 18, 2023, Nursing Home Staffing Crisis

The United States is experiencing a significant shortage of, and a growing demand for, qualified workers who are capable of managing, supervising, and providing high-quality services and supports for older adults.

National Workforce Crisis facing Long-Term Services and Supports, LeadingAge, Undated, National Workforce Crisis

“Survey agencies have not received a meaningful increase in federal funding to complete these critical oversight responsibilities since 2015, yet the cost to recruit and retain survey staff, the volume of work and additional work expected of survey agencies has significantly increased. These factors have resulted in many survey agencies being unable to complete recertification and complaint surveys timely, leaving nursing home residents at risk of substandard care.”

Shelly Williamson, president of the board of directors for the Association of Health Facility Survey Agencies (AHFSA), ‘System in Crisis’: US Senate Hearing Calls for More Funding, Staffing for Nursing Home Inspections, Skilled Nursing News, May 18, 2023, System in Crisis

“Underfunded and understaffed, state agencies have fallen behind on the basic duties that they’re charged with executing on, for example, conducting annual nursing home inspections and responding to resident complaints in a timely manner. Nursing home residents are at risk because of this problem.”

Sen. Bob Casey (D-PA), chairman ofthe Special Committee on Aging, Nursing home oversight ‘a system in crisis,’ Senate committee finds, McKnight’s Long-Term Care News, May 19, 2023, Nursing Home Oversight

How do you define disability?

“It is not the presence of the impairment, but it is the social and attitudinal barriers that are hindering our performance. And what we want is for those barriers to be removed so that a person with any kind of impairment can perform at the same level as anybody else. . . Disability is not an issue. And so, we should stop making it an issue. Rather, we should embrace it as a kind of diversity.”

Gertrude Oforiwa Fefoame of Ghana, the new chair of the United Nations Committee on the Rights of Persons with Disabilities and the first African woman in that post, She’s a U.N. disability advocate who won’t see her own blindness as a disability, Goats and Soda – NPR, May 13, 2023, UN Disability Advocate

In a 2012 conference call, [Sam] Zell, [property mogul who is the largest landlord of mobile homes in the US,] said he liked “the oligopoly nature of our business”, in reference to limited competition in the mobile home industry. Zell self-coined the term “grave dancer”. As a rebuttal, tenants and tenant advocates have labeled him a “grandma gouger” over rent increases on the tenants, often older, at his parks.

‘It’s hell’: life under the American mobile home king who calls himself a ‘grave dancer’, The Guardian, May 11, 2023, It’s hell

“It’s sickening. It’s just misery and people will tell me all the time; I feel like I’m in prison here. What did I do to pay money to these people every month to deserve this? It is by far and large the worst consumer experience I have ever had in my life. They’re slumlords and there’s no way around it.”

Brey Mafi, homeowner in the mobile home community in Lake Elmo, Minnesota, ‘It’s hell’: life under the American mobile home king who calls himself a ‘grave dancer’,The Guardian, May 11, 2023

“The question becomes, for the older adult, what are the barriers to evolving, to changing your opinions, to forming new relationships?” asks Nina Kohn, a law professor at Syracuse University with a specialty in the civil rights of older people. “When you form these new relationships, does that trigger people trying to remove your rights? The answer is: In some cases, it does.” In particular, “decisions that seem atypical are going to be treated as suspect.” An older man who spent his life in a heterosexual marriage and now wishes to love another man might, for instance, be restrained from doing so. So might a woman who falls in love with a man decades her junior. Or, say, a wealthy 80-something widow who takes up with a horseshoer. “And all of those social biases are now being used to potentially undo individuals’ decisions while they’re still alive.”

The Mother Who Changed: A Story of Dementia, New York Times Magazine (free access), May 9, 2023, The Mother Who Changed

Within the legal world, “there has been, in the last several years, a real sea change in thinking about capacity,” Charlie Sabatino, former director of the American Bar Association’s Commission on Law and Aging, said. “The real die-hard view is that you never lose capacity.” In this newer view, a person can occupy an infinite number of spaces on a gradient from legally capable to incapable, with the far end of the spectrum reserved for people stuck in comas or vegetative states. Short of that extreme, a person will almost certainly retain the ability to choose some things for herself, even if she can’t choose everything. A person might, for instance, be legally incapable of carrying out a complex property transaction but capable of managing a small bank account.

The Mother Who Changed: A Story of Dementia, New York Times Magazine (free access), May 9, 2023, The Mother Who Changed

“Having health care coverage is fundamental to reducing health disparities, but it must go hand-in-hand with timely access to services. Connecting those priorities lies at the heart of these proposed rules. With the provisions we’ve outlined, we’re poised to bring Medicaid or (Children’s Health Insurance Program) coverage and access together in unprecedented ways — a key priority that’s long overdue for eligible program participants who still face barriers connecting to care.”

Chiquita Brooks-LaSure, Administrator for the Centers of Medicare and Medicaid Services, Feds Want To Shake Up Rules For Home And Community-Based Services, Disability Scoop, May 5, 2203, Rules for HCBS

In the real world, it looks as if voters in 2024 will have to weigh Mr. Biden’s advanced age more or less as he proposes — not compared with the alternatives they wish they had but compared with the ones they do.

Opinion: How should Americans think about Biden’s age? Like this. Washington Post (free access), May 19, 2023

May 15, 2023

The coronavirus pandemic has cost millions of lives and trillions of dollars, has upended the economy, and has exposed and aggravated a grim roster of disparities and societal fissures. Though it’s hard to imagine, the next pandemic could do far worse. We have the tools to prevent that from happening, but we have to start putting the lessons of the past three years to use now.

America Is Forgetting the Lessons of the Covid Health Emergency, *New York Times, May 11, 2023, America Is Forgetting Lessons

“Most of us will be a caregiver at some point.”

Sarah Johal, executive director of the Parents in Tech Alliance, a national nonprofit working to build healthy workplaces for families, Struggling Caregivers Find New Support From Employee Resource Groups, *Wall Street Journal, May 11, 2023, Struggling Caregivers

“Particularly in senior services, the demand for our services is exploding, in-home care and institutional care and acute care, and we don’t have enough people, and if we don’t do something about it soon, we’re going to be in a real, real bad situation.”

Clif Porter, the senior vice president of government relations for AHCA/NCAL, Visa freeze imperils nursing workforce, Politico, May 15, 2023, Visa freeze imperils nursing workforce

“Our Administration will continue to honor [the] sacrifices [of Massachusetts veterans] by ensuring that veterans receive the care and services they’ve earned and deserve.”

Lt. Gov. Kim  Driscoll, Holyoke Veterans’ Home Looks to Bright Future with New Executive Office of Veterans’ Services (EOVS), Executive Office of Veterans’ Services, May 1, 2023, Holyoke $164M funding

“Family caregivers make up 20 percent of the workforce and they are in crisis – which means we are all in crisis. The issues surrounding caregiver employees have been bubbling beneath the surface for decades and we cannot afford to ignore them any longer. We are calling on employers to join us in taking bold steps toward solutions that will improve the lives of their employees and benefit the bottom line.”

Dr. Jennifer Olsen, chief executive officer, the Rosalynn Carter Institute for Caregivers, New White Paper Reveals Why One-in-Five Employees are at Risk of Leaving the Workforce, and What Employers Can Do to Help, the Rosalynn Carter Institute for Caregivers, February 28, 2022, Leaving the Workforce

“We think [creating the position of Secretary of the Executive Office of Housing] is certainly going to be a chief reason we’re going to be able to meet or hopefully close the gap on the 200,000 housing units that we are short in Massachusetts.”

Lt. Gov. Kim  Driscoll, Source: Healey Chooses Augustus For Housing Secretary, *State House News, May 15, 2023, Healey Chooses Augustus

May 8, 2023

Lawmakers must take a more critical look at what the state’s powerful nursing home lobby legitimately needs and what guardrails, including audits, are needed to make sure taxpayer money doesn’t just end up lining the pockets of for-profit nursing home operators. . .

And are the guardrails sufficient?

More money is tied into federal quality metrics. . . But will the state actually audit use of these monies? It should.

And why not use this spending to force improvements in nursing-home deficiencies, such as non-responsiveness to residents’ needs, that drive a large proportion of complaints in [the state].

Nursing-home budget largesse should reflect need, not lobbying clout: editorial, Cleveland.com, May 7, 2023, Reflect Need Not Lobbying Clout

The home care workforce grew from approximately 840,000 to 1.22 million workers between 2008 and 2013. After 2013, growth slowed, ultimately reaching 1.42 million workers in 2019. In contrast, the number of Medicaid HCBS participants grew continuously from 2008 to 2020, with accelerated growth between 2013 and 2020. As a consequence, the number of home care workers per 100 HCBS participants declined by 11.6 percent between 2013 and 2019.

The Home Care Workforce Has Not Kept Pace With Growth In Home And Community-Based Services, *Health Affairs, April 19, 2023, Home Care Workforce

“It’s plain and simple: families deserve transparency when making decisions about hospice and home health care for their loved ones. . . Shining a light on ownership data is good for families, good for researchers, and good for enforcement agencies.”

U.S. Department of Health and Human Services Secretary Xavier Becerra, For the First Time, HHS Is Making Ownership Data for All Medicare-Certified, Centers for Medicare & Medicaid Services, April 20, 2023, Home Health Agency Ownership Data

“We want to make sure that the nursing home industry is more transparent. . .Nursing homes frequently use other companies to provide various services. Generally, the public doesn’t know what companies provide which services or [whether] companies might be contracted to nursing home owners. Making this information available publicly empowers nursing home residents and their families to make more informed decisions about their care.”

Dara Corrigan, deputy CMS administrator and director of the agency’s Center for Program Integrity, CMS eager to leverage new nursing home ownership data, leader confirms, McKnight’s Long Term Care News, April 26, 2023, CMS Eager to Leverage

We know that powerful forces in the nursing home industry, including private equity investors, vigorously oppose a minimum staffing standard. Private equity investors often turn a profit by manipulating personnel: hiring fewer workers and slashing pay and benefits at the cost of patient care. Setting a staffing standard would mean having to pay higher wages to attract more people to the industry; it would mean paying a living wage, so working in a nursing home would be a sustainable, family-supporting job. 

In Recognition of Caregivers, White House Readies to Help Nursing Home Worker, AFL-CIO, May 1, 2023, in recognition of caregivers

“Older adults, in particular those with underlying health conditions, such as heart or lung disease or weakened immune systems, are at high risk for severe disease caused by RSV. Today’s approval of the first RSV vaccine is an important public health achievement to prevent a disease which can be life-threatening.”

Peter Marks, director of the FDA’s Center for Biologics Evaluation and Research, First vaccine targeting RSV wins FDA approval. More are coming. *Washington Post, May 3, 2023 (updated), RSV Wins FDA Approval

Lawmakers must take a more critical look at what the state’s powerful nursing home lobby legitimately needs and what guardrails, including audits, are needed to make sure taxpayer money doesn’t just end up lining the pockets of for-profit nursing home operators. . .

And are the guardrails sufficient?

More money is tied into federal quality metrics. . . But will the state actually audit use of these monies? It should.

And why not use this spending to force improvements in nursing-home deficiencies, such as non-responsiveness to residents’ needs, that drive a large proportion of complaints in [the state].

Nursing-home budget largesse should reflect need, not lobbying clout: editorial, Cleveland.com, May 7, 2023, Reflect Need Not Lobbying Clout

There continues to be a dire need for changes within the nursing home structure. If you have not visited a nursing home recently, it’s an eye-opening experience! The lack of adequate staff along with inadequate training needs to be addressed.

Ruth Bensmiller-Reed, Inadequate nursing home care must be addressed, The Gazette, May 7, 2023, Inadequate Nursing Home Care

Visiting a hospital or clinic today feels like facing a firing squad, with rounds and rounds of bills coming from every direction. Fewer than half of Americans rate the quality of U.S. health care as excellent or good. . .

Patients are burned out. Nurses are leaving the profession. Doctors are demoralized. In the meantime, the people not sick or tending to sickness — the corporate middlemen in charge of insurance companies, private hospitals, doctor practices and pharmaceutical companies — are feasting. As Donald Berwick, a former administrator for the Centers for Medicare and Medicaid Services, noted, the “glorification of profit, salve lucrum, is harming both care and health.”

Dr. Ricardo Nuila, American Health Care Is Dying. This Hospital Could Cure It., New York Times (free access), March 9, 2023, American Health Care Is Dying

After listening to partisan rants on both sides that aim only to tweak rather than remake our system, I suggest we hold a national referendum on health care. Americans should vote yea or nay on a system that provides basic health care for all.

A federal ballot measure like this has never been held in our country. A referendum would ask Americans to focus on the proposal rather than on a candidate or political party. There’s reason to believe that a direct vote could help us solve our health care quagmire.

Dr. Ricardo Nuila, American Health Care Is Dying. This Hospital Could Cure It., New York Times (free access), March 9, 2023, American Health Care Is Dying

[A]s many as 30% of nurses at some Boston hospitals were fixed contract or traditional traveling nurses during the height of the pandemic. In addition to sapping hospitals of much-needed permanent nurses, the reliance on travel nurses has cost the industry $1.5 billion.

Newest ‘State of Nursing in Massachusetts’ Survey Reveals Unsafe Conditions and RN Burnout as True Causes of Statewide Staffing Crisis as Hospitals Overspend on Temporary Nurses and Patient Care Quality Drops, Massachusetts Nurses Association, March 29, 2023, MNA Survey

“After a time, we couldn’t care for her ourselves. After all, we’re all in our 60s, too.”

Hua Ailing, a post office accountant in a small county in Anhui Province, China, Deaths of Seniors in Hospital Fire Point to China’s Elder Care Shortfall, New York Times (free access), May 8, 2023, China’s Elder Care Shortfall

[Ricardo Nuila, a practicing physician and associate professor at Baylor College of Medicine]  asks a simple but profound question: “Why do some people benefit from health care in America, while others are excluded?” His answer is equally simple: Because the principal goal of the American health care system is to make money, period.

Made to Care For Those Left Behind, This Hospital Leads the Way, *New York Times, May 2, 2023 (updated), Made to Care

High-quality early care and education and long-term care are critical to our Nation’s economic growth and economic security.  Early care and education give young children a strong start in life, while long-term care helps older Americans and people with disabilities live, work, and participate in their communities with dignity.  Access to both types of care is also critical to our national security because it helps ensure the recruitment, readiness, and retention of our military service members. . .

A sizeable majority of families and individuals in the United States who require care cannot access the affordable, high-quality care they need.  The markets for child care and long-term care for persons with disabilities and older adults who need support in their homes and communities fail to deliver enough high-quality care because of a persistent gap between the costs of providing this care and the prices families can pay.  

Executive Order on Increasing Access to High-Quality Care and Supporting Caregivers, The White House, April 18, 2023, Increasing Access to High-Quality Care

“It’s … with great hope that I declare Covid-19 over as a global health emergency. However, that does not mean Covid-19 is over as a global health threat.”

WHO Director-General Tedros Adhanom Ghebreyesus, WHO declares end to Covid global health emergency, STAT News, May 5, 2023, WHO Declares End to Covid Emergency

“For 75 years, CDC and public health have been preparing for Covid-19, and in our big moment, our performance did not reliably meet expectations. My goal is a new, public health action-oriented culture at CDC that emphasizes accountability, collaboration, communication, and timeliness.”

Dr. Rachel Walensky, CDC Director, in August 2022, CDC Director Rochelle Walensky to step down, STAT News, May 5, 2023, Walensky to Step Down

“This warehousing of children is beneath us. If we saw children being treated this way anywhere else, we would see it as a form of abuse or neglect. We choose to allow these children to languish. And that is morally unconscionable. It is willful and collective abuse.”

Kenneth Goodman, who founded and directs the medical ethics program at the University of Miami Miller School of Medicine, ‘Just another baby for them.’ Parents, feds fight for kids stuck in Florida nursing homes, Miami Herald, May 7, 2023 (updated), Just Another Baby for Them

May 1, 2023

When residents of a country are shut out of the flow of information critical to knowledge of how their taxes are utilized, they have no say in governance, and, therefore, no real democracy. They cannot advocate intelligently and effectively for their rights as funders of programs that should benefit them.  When they are kept in the dark and subjected to what monied interests choose to tell them, they lose their right to expect a competently run program for which they are paying.

David Kingsley, PhD, The AHCA/NCAL & Brown University Long Term Care Data Cooperative: A Horrifying Move by the Nursing Home Industry to Control Nursing Home Data Analytics. Tall Grass Economics, April 30, 2023, LTC Data Cooperative

We can work to build an even better community for our older residents by:

• Not limiting our thinking about aging,
• Exploring and combating stereotypes,
• Emphasizing the many positive aspects of aging,
• Inspiring older adults to push past traditional boundaries, and
• Embracing our community’s diversity.

Sample Proclamation, Administration on Community Living, Older Americans Month 2023, Sample OAM Proclamation

“It’s banging on the door. It’s getting harder. It’s getting tougher. Every day gets tougher, but that’s the way it is. Who do I see about that?

“All these subtle ways it gets you. You don’t die from Parkinson’s. You die with Parkinson’s. I’m not gonna be 80.”

Michael J. Fox, age 61 who has had Parkinson’s Disease for 32 years, Michael J. Fox talks mortality, Parkinson’s: ‘I’m not gonna be 80.’ *Washington Post, April 30, 2023 (updated), Not gonna be 80

“Forty-two disabled veterans, five of whom were named in the indictments. . . were crowded into a locked space designed to house at most 25 patients. As one witness told the grand jury, there were ‘bodies on top of bodies.’ ‘[T]ightly packed together and sick,’ and ‘coughing on top of each other,’ the veterans at this state-run facility were left in their ‘johnnies,’ were placed in beds less than two feet apart, and were deprived of adequate hydration and food.”

Massachusetts Supreme Court Justice Dalila A. Wendlandt, writing for the court majority, Justice for Holyoke home victims back on track, *Boston Globe, April 29, 2023 (Updated), Justice for Holyoke Home

“Walking directions are a lot different than rolling directions. Potholes can tip over a chair. The quickest route isn’t always the safest route.”

Jake Haendel, age 34, who has a rare neurological disorder, After a harrowing life journey, Boston entrepreneur looks to build a ‘Waze for accessibility’, *Boston Globe, , April 29, 2023, Waze for accessibility

Research over decades has shown this strong association: The higher the level of nurse staffing, the more likely you are to be discharged alive, or to have a good outcome. Ratios sound bureaucratic, but they tell a real story: If you are hospitalized, your nurse might be assigned four patients, or they might be assigned, for instance, eight patients. That’s not unusual. What that ratio means for you, though, is that you may or may not get the care that you need, because a nurse can’t be in eight different places at once.

Sarah DiGregorio on how supporting nurses helps all of us, Sunday Morning (CBS) (video report), April 30, 2023, Supporting Nurses

The purpose of nursing is to maximize people’s health and well-being. So, we need to make sure nurses have the working conditions that make it possible for all of us to get the care we deserve.

Sarah DiGregorio on how supporting nurses helps all of us, Sunday Morning (CBS) (video report), April 30, 2023, Supporting Nurses

We don’t want to be caught off guard again. Governments at all levels should be continuing to build the virus-tracking capacity that was hastily created as the Covid crisis grew.

Our Covid Data Project Is Over, but the Need for Timely Data Is Not, *New York Times, April 30, 2023, Timely Data

There is good evidence that masks can protect ‌‌people who use them correctly and consistently.

How Well Does Masking Work? And Other Pandemic Questions We Need to Answer, *New York Times, April 30, 2023, Does Masking Work

“Of course, we could have done better. We tried. If you look at what I was saying in the months before I stepped down, and what Ashish Jha is saying to this day, it’s that if you are vaccinated and boosted and have available therapy, you are not going to die, no matter how old you are. We were very explicit in saying that. Did people hear that? I don’t know. How loud do you have to say something for people to understand? How often have you got to say it?”

Dr. Anthony Fauci, Dr. Fauci Looks Back: ‘Something Clearly Went Wrong’, *New York Times Magazine, April 24, 2023, Dr. Fauci Looks Back

“Private equity sees a huge opportunity to take smaller businesses that lack sophistication, lack the ability to grow, lack the capital investment, and private equity says, ‘We can come in there, cobble these things together, get standardization, get visibility and be able to create a better footprint, better access, and more opportunities.’”

But, “it is a little scary. There are people that have no business being in health care” looking to invest in hospice.

Steve Larkin, CEO of Charter Healthcare, a hospice chain owned by the private equity firm Pharos Capital Group, Fortune, July 27, 2023, Hospices have become big business for private equity firms, raising concerns about end-of-life care, Hospices as Big Business

Nursing facilities are a multi-billion-dollar industry that can be inefficient, cruel, and lethal.

Margaret Morganroth Gullette, The neglect in nursing facilities is no accident, WBUR Cognoscenti, May 1, 2023, Neglect in Nursing Homes

The crisis across the care continuum is urgent. But out of sight is out of mind until it’s you/your family. There’s an important comment by former Sen Richard Moore about the need for transparency. Why do for-profit companies buy nursing homes if they’re unprofitable?

State Senator Patricia Jehlen (D- Somerville), Senator Jehlen on Twitter, February 27, 2023

April 24, 2023

“Different people who need assistance may need it in different ways. So, asking them how you can help them is amazingly helpful. It allows the individual who’s in need of assistance to maintain a sense of self, to maybe feel a little less helpless, and maybe even a little less vulnerable.”

Mike Huddleston, who has a degenerative neuromuscular condition, After Mike fell on a busy sidewalk, a stranger helped in just the right way, NPR My Unsung Hero from Hidden Brain, April 24, 2023, Fell on Busy Sidewalk

“For decades, disabled people have fought to live in our homes and communities, not in institutions. A key element to this fight is enhancing wages, benefits, and job conditions for direct support workers who provide the necessary services to ensure community integration. Individuals in this workforce, who are predominantly disabled women of color, must often work multiple jobs with no benefits to make ends meet.”

Maria Town, President and CEO of American Association of People with Disabilities, in response to the issuance of the Biden-Harris Executive Order on the care economy, AAPD Applauds Biden-Harris Executive Order on the Care Economy, American Association of People with Disabilities, April 18, 2023

There are an estimated 1.5 million active adult guardianship cases across the country. It’s a massive industry, with guardians controlling an estimated $50 billion in assets. Advocates for guardianship reform say a lack of oversight leads to many reported instances of fraud and abuse.

Local Spotlight: The dangers of guardianship programs, 1A NPR, April 18, 2023

“President Biden took the significant step today of recognizing the value of family and paid caregiving across the life cycle including for people with disabilities.”

David Goldfarb, director of policy at The Arc, Biden Signs Executive Order Aimed At Improving Care For People With Disabilities, Disability Scoop, April 19, 2023, Biden Signs Executive Order

“I didn’t serve my country, work, and pay taxes for 44 years just to let my voice fade away or see younger generations lose benefits I fought for my whole life…I urge you to not cut or change benefits for Social Security, Medicare, and Medicaid. We are the richest democracy on earth, we can afford to allow workers to retire with dignity.”

Dave McLimans, a retired steelworker from Parkesburg, PA, Beyond the 9 to 5: Dismantling Barriers and Building Economic Resilience for Older Workers, U. S. Senate Special Committee on Aging, April 20, 2023, Case Holds Hearing

The United States has 4% of the world’s population but 16% of COVID-19 deaths.

The COVID Tracking Project Part 1, The PRX Exchange, April 18, 2023

People are rendered to a state of non-personhood, in the name of protection.

Morgan Whitlatch, Center for Public Representation, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023, Guardians Dark Side

The [guardianship] system is a profit center. It is not benevolent. It is not altruistic.

Rick Black, guardian reformer, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023, Guardians Dark Side

Across the US, uneven oversight and accountability mar the legal process by which adults are placed under guardianship. The lack of rigor has opened the door to stolen funds, judicial errors, bulging caseloads, and legal entanglements for vulnerable people.

Guardians’ Abuses Persist as One State’s Easy Fix Goes Unmatched, Bloomberg Law, March 10, 2023, A Solution

“There shouldn’t be a difference in the way that you treat athletes, be it Olympians, able-bodied athletes or athletes with disabilities.”

Jonas Oliveira, head of content for the International Paralympic Committee, Edgy or insensitive? The Paralympics TikTok account sparks a debate, NPR, April 24, 2023, Edgy or insensitive

“A full analysis of nursing home cost reports, including charges by related parties, could determine whether and how much nursing homes really need to provide quality care for their residents.”

Former State Senator Richard T. Moore, Chair DignityMA Legislative Workgroup, How Do We Know if Nursing Homes are Struggling?, Response to The Daily News article (April 24, 2023), April 24, 2023

April 17, 2023

Asked whether politicians cared very much about the needs of Americans in their 70s and 80s, not a single participant thought politicians did. “They take one look at a senior and say, ‘He’s not producing a thing. He’s doing nothing good for the people.’ And it’s wrong. They just look at us like we’re numbers,” said Francis. “So, they look at us as irrelevant, I guess is the word. That’s how I feel,” said Elaine.

What Happened to America? We Asked 12 People in Their 70s and 80s. New York Times (free access), April 16, 2023

“The decision to tolerate preventable deaths in disproportionately vulnerable groups, in exchange for the convenience of more able-bodied, younger, wealthy, and white individuals, is unethical and demonstrates a reckless disregard for the lives of communities disproportionately impacted by COVID.”

The People’s CDC, a coalition of public health experts, Covid is still a leading cause of death as the virus recedes, *The Washington Post, April 16, 2023

“The non-covid death rate has not returned to pre-pandemic levels. We believe that there’s an invisible or hidden burden of covid that has persisted essentially into the present, and those deaths are going unrecorded.”

Andrew Stokes, a Boston University researcher who is part of a team investigating the rise in excess deaths, Covid is still a leading cause of death as the virus recedes, *The Washington Post, April 16, 2023

The same nature that leads us to rock the babies and volunteer for Meals on Wheels leads us to care for the earth. We are empathic in the broadest sense. We care for all who suffer, whether that is a child, an aquifer, a polar bear, or a forest.

Grandmothers of the World, Unite, New York Times (free access), April 16, 2023

It has been proven that companies that attract and retain workers with disabilities have more success with their customer-facing interactions, morale, and financial performance. People with disabilities add to the bottom line.

Diversity, equity, and inclusion must include people with disabilities, *Boston Globe, April 17, 2023

“The rapid rise and geographic spread of cases is concerning and emphasizes the need for continued surveillance, expanded lab capacity, quicker diagnostic tests and adherence to proven infection prevention and control.”

CDC epidemiologist Meghan Lyman, MD, CDC: C. auris spreading at ‘alarming’ rate in U.S. healthcare facilities, McKnight’s Long Term Care News, March 22, 2023

“One of the real pain points of this job [as a home health aide] is having a felt experiential day-to-day sense of why this work is so important [a]nd then feeling societally that it is invisible and not recognized.”

Emma Tsui, an associate professor at the CUNY School of Public Health, Demand for home health aides is soaring. So why are they still so undervalued?, STAT News, April 14, 2023

“We are at a critical point for the Chelsea Veterans’ Home. [The] home had deteriorated into chaos. With a new Administration, we have an opportunity to set this ship right. Failure is not an option.”

State Senator John Velis, co-chair of the Legislature’s veterans’ affairs committee, Can Maura Healey fix the Chelsea Veterans’ Home?, *The Boston Globe, April 16, 2023

“These past few years have been incredibly difficult for our veteran community. They deserve our very best and as a fellow veteran myself, I’m committed to … ensuring that our office can honorably serve those who served us.”

Dr. Jon Santiago, new Secretary of Veterans’ Services, Can Maura Healey fix the Chelsea Veterans’ Home?, *The Boston Globe, April 16, 2023

April 10, 2023

[Elder]  abuse is experienced by about one in 10 community-dwelling older adults each year. The COVID-19 pandemic created more opportunities for elder mistreatment with people sheltering in place and more isolated.

Utilizing Public Health to Address Elder Abuse, National Center on Elder Abuse, April 6, 2023

“There are not a lot of people in nursing homes with children under 25. This would absolutely relieve nursing homes of any accountability for a wrongful death.”

Zayne Smith, director advocacy at AARP Florida, Suing Florida nursing homes for wrongful death will get harder if this bill passes, Tampa Bay Times, March 7, 2023

“The decision [by the Commonwealth to relax masking mandates]  has been made behind closed doors without any input by people most impacted.”

Dr. Lara Jirmanus, a primary care physician and instructor at Harvard Medical School who cofounded the Massachusetts Coalition for Health Equity, Health groups call on Mass. to keep mask mandates in health care settings, *Boston Globe, April 5, 2023 (updated)

“Some [residents] have been told they will be homeless if they do not accept proposed placements, often far from their communities and against residents’/families’ needs and choice.”

From the complaint filed with the Massachusetts Office of the Attorney Genera by Stavros Center for Independent, Fast closures of nursing homes in Massachusetts raise alarms and worry over patients, NBC News, April 4, 2023

April 3, 2023

There is no one way to be autistic — each individual with autism experiences it differently — but together, autistic people make industries, communities, and our Nation stronger. Today, we celebrate the achievements of neurodiverse people everywhere and champion the equal rights and dignity of all those living on the autism spectrum.

President Joe Biden, A Proclamation on World Autism Awareness Day, 2023, The White House, March 31, 2023

In its most recent survey of unpaid caregivers, published in 2020, AARP found that there were nearly 42 million people caring for an aging friend or family member — more than tenfold the number in 1989. The fastest growth is happening among younger generations; the share of caregivers who are under 45 quintupled over the past two decades, to nearly 66 percent from 16 percent, as their parents — many of the 72 million baby boomers — are living longer but doing so with more chronic diseases and disability and less means than the generation before them.

The Agony of Putting Your Life on Hold to Care for Your Parents, *New York Times Magazine, , March 28, 2023

“In this era, any civil rights case that goes to the court gives one agita.”

Robert Dinerstein, director of the Disability Rights Law Clinic at American University, referencing a case before the U.S. Supreme Court regarding the Americans with Disabilities Act, Supreme Court’s new target: the Americans with Disabilities Act, *Boston Globe, March 29, 2023

“Exercise is not just for the young,” said, who was not involved in the research. “Older individuals can also reap the benefits of exercise and should be encouraged to do so.

Mikel Izquierdo, professor of health sciences at the Public University of Navarra in Spain, Exercise with a buddy. Your brain will thank you for it. Washington Post, March 29, 2023

“Socializing exercises our cognitive function, providing more resilience to late-life decline — a concept known as building cognitive reserve. Being more socially active may also encourage healthy lifestyle behavior, and reduce stress.”

Andrew Sommerlad, associate professor of psychiatry at the University College London, Exercise with a buddy. Your brain will thank you for it. Washington Post, March 29, 2023

“People are living longer. This is an expensive state for people. And we need to do everything we can to make life more affordable for seniors as they age.”

Governor Maura Healey, ‘An expensive state.’ Healey says tax and budget plans will help struggling seniors, *Boston Globe, April 1, 2023 (updated)

“Ready? I’ve wrapped my head around being dead, certainly. Not sure if I’ll ever really be ready. It’s not like packing a bag and standing outside waiting for a taxi.”

A 60 year old dying man in conversation with his physician, As a Doctor, I Know Being Ready to Die Is an Illusion, *New York Times, March 29, 2023

I once felt that I would rather die than go blind. Now I feel the opposite. Daily life has a renewed delight and vigor. I am learning new things constantly. The most ordinary tasks, like going to the post office, have become terrifically interesting. In terms of everyday life, I feel that I am finally in there, more mindful and alert, more fully present. I have chosen curiosity over despair.

Edward Hirsch, a poet, a critic, I Am Going Blind, and I Now Find It Strangely Exhilarating, *New York Times, March 28, 2023

Despite their notable political differences, Texans and Californians agree. Supported decision-making advances self-determination. We’re not surprised. Making your own decisions is at the heart of what it means to be a person.

Britney Spears Called Out Her Guardianship. Supported Decision-Making Offers a Different Approach. *New York Times, April 3, 2023

“[Massachusetts Commission for the Blind  head David D’Arcangelo is] an inept and destructive leader. I’ve never seen the agency deteriorate as much as it has under him.”

Amy Ruell, a former member of the commission’s statutory advisory board, Inside the state commission for the blind: alleged verbal abuse, shrinking services, questionable spending, *Boston Globe, April 2, 2023

March 27, 2023

“This proposal [to establish an Executive Office of Housing] to me is supreme. I’m excited to work with you [Lt. Gov. Kim Driscoll] and to work with the new secretary.”

Rep. Antonio Cabral, Joint Committee on Housing, Lawmakers Warm to Housing Secretariat Plan, *State House News, March 27, 2023

Releasing older adult prisoners poses a very low danger to communities overall, and in cases of prisoners with debilitating health problems, many are unable to commit new crimes.

Broken and Underutilized: Understanding Compassionate Release Programs for Older Adult Prisoners, Bifocal – American Bar Association, January 19, 2023

“People with disabilities could lose access to home health care and, with it, the ability to stay in their homes — which, by the way, shows it extends life of the people. People would much rather stay, if they could, just with a little bit of help in their own homes rather than go to a home. And it’s less expensive. Medicaid also pays for nursing home care for about two thirds of all Americans who live in nursing homes. Well, it’d be different if they were able to stay home.”

President Joe Biden, Home Health Care ‘Extends Lives’ and Is ‘Less Expensive’, Home Health Care News, March 24, 2023

Nursing homes that conducted staff surveillance testing more regularly experienced significantly lower rates of COVID infections and deaths among residents, according to a new study [published in the New England Journal of Medicine.]

More staff COVID testing saved nursing home resident lives, Futurity, March 24, 2023

“Please, Sir, I want some more!”

If Dickens were alive today, and living in Massachusetts, he might easily have chronicled the plight of nursing home residents, and their equally bare bones Personal Needs Allowance!

Richard T. Moore, Dignity Alliance Massachusetts’ Legislative Workgroup Chair, “Please, Sir, I want some more!”, GSA [Gerontological Society on Aging] Connect Open Forum, March 25, 2023, [Accessible online only to GSA members.]

Boston is one of the nation’s most expensive cities. More than seven in 10 older people living alone here — and 45 percent of older couples — lack the minimum income required to cover necessary expenses, according to February data from the University of Massachusetts Boston’s Gerontology Institute. For them, life is a daily struggle to maintain dignity and make ends meet.

‘I have to take my time.’ Growing old in Boston without much money is an everyday stress test. *Boston Globe, March 25, 2023

March 20, 2023

“It’s this really enormous financial bomb sitting out there that most people are just hoping won’t hit them. There’s an incredible amount of confusion and denial.”

Marc A. Cohen, co-director of the LeadingAge LTSS Center at the University of Massachusetts at Boston, Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)

“[The cost of long-term care] has to be addressed because ultimately it will be a societal crisis.These are the schoolteachers and the firefighters, the working people who take care of all of us, who cannot afford the [senior housing] that is being built out there right now.”

Beth Mace, chief economist for the National Investment Center for Seniors Housing & Care (NIC), Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)

“Even before the pandemic, the long-term care system in this country was broken. It’s too expensive for most people, yet it needs further investment to ensure front-line caregivers receive a competitive wage and facilities continue to modernize. . . You’re combining housing and health care, and most Americans haven’t thought about or can’t afford to plan for this expense,”

LaShuan Bethea, executive director, the National Center for Assisted Living, Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)

[Beth Roper] is baffled there is no safety net for families in her situation. The Ropers saved for college, they paid off their house, they tithed at church, and they paid thousands of dollars in taxes for more than 70 years of combined work.

“We did everything our country asked us to do.”

Beth Roper, whose husband, Doug Roper, was a history teacher and wrestling coach and began showing signs of forgetfulness that seemed to accelerate in 2018, the same year he retired, Senior care is crushingly expensive. Boomers aren’t ready, Washington Post (free access), March 20, 2023 (updated)

“We should all seek age and disability justice. Given a vast retirement savings crisis and increasing ill health, Gen X and Gen Z may also need a bed someday.”

By Margaret Morganroth Gullette, Everyone in a nursing home deserves a single room, *Boston Globe, March 15, 2023 (updated)

“How many years do I have left? I want to live those as well as I can. But to some degree, you lose your dignity.”

Alex Morisey, a 82-year-old man who lives in a Philadelphia nursing home, In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023

In a long-term care system that subjects some of society’s frailest to daily indignities, Medicaid’s personal needs allowance, as the stipend is called, is among the most ubiquitous, yet least known.

In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023

“I was shocked. It’s about dignity for these people.”

Virginia State Rep. Jennifer Wexton, who in 2019 introduced a bill to raise the minimum allowance to $60 and cement annual increases tied to those for Social Security but didn’t even get a hearing, In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023

Nursing home residents often must cede control of everything from how often they get a shower to what they eat. With no financial wiggle room, even more autonomy evaporates, putting out of reach the chance to take a taxi to see a friend, to get lost in a newly purchased book, or to escape the monotony of the cafeteria with some take-out food.

In nursing homes, impoverished live final days on pennies, AP News, March 15, 2023

“We take patients who are going to die of their diseases within a three-month period of time, and we force them into a denial [issued by a Medicare Advantage  insurer] and appeals process that lasts up to 2.5 years. So, what happens is the appeal outlasts the beneficiary.”

Chris Comfort, chief operating officer of Calvary Hospital, a palliative and hospice facility, Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need, STAT News, March 13, 2023

“They are looking at our patients in terms of their statistics. They’re not looking at the patients that we see.”

Medical director of a post-acute care facility, Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need, STAT News, March 13, 2023

“There’s no doubt we have a full on housing crisis in Massachusetts. There’s not enough housing to meet the current demands at all levels — not market rate, not affordable, certainly not truly affordable for our most vulnerable populations. And we really are trying to partner with communities and make sure they have the tools they need. We’re focused on production.”

Lt. Governor Kim Driscoll, On Big Issues, Driscoll Taking “We’ll See” Approach, *State House News, March 13, 2023

“I still struggle to make out every word. It’s kind of like a foreign language you speak very well but not completely, so you’re always a little behind. . . I wish I had gotten [hearing aids] sooner because I missed a lot.”

Mary Louise Kelly, co-host of NPR’s daily newsmagazine “All Things Considered,”, NPR’s Mary Louise Kelly talks about living with hearing loss, *Washington Post, March 19, 2023

“It’s better for me to be under shelling than to be there. It was living hell.”

Viktor Krivoruchko, 54, who had a stroke and had been placed in an Ukrainian nursing home, War forces thousands of disabled Ukrainians into institutions, *Washington Post, March 19, 2023

“Despite the huge challenges we are facing, especially for people with disabilities, we are not stopping our effort to move people out of institutions.”

Oksana Zholnovych, Ukraine’s minister of social policy, War forces thousands of disabled Ukrainians into institutions, *Washington Post, March 19, 2023

“The rule creates a framework that will result in a shared understanding of quality community living.”

Alison Barkoff, Acting Administrator of the Administration for Community Living, Joint Statement from the Centers for Medicare & Medicaid Services (CMS) and the Administration for Community Living (ACL): Implementation of the Home and Community-Based Services Settings Regulation, The Centers for Medicare & Medicaid Services (CMS) and the Administration for Community Living (ACL), March 17, 2023

“You have to remind yourself that you know who you are and you are the person who can reaffirm and comfort the person who had reaffirmed and comforted you for so long.”

Anne Basting, MacArthur Fellowship recipient based on her 30 years of working with persons with dementia, This Conversation Changed the Way I Think About Dementia, First Person / New Times Podcast, March 16, 2023

“The bill’s workforce funding is necessary to ensure there are enough health professionals, including licensed practical nurses (LPNs) and certified nursing assistants (CNAs), to meet the needs of vulnerable residents under state care while we transition beyond the COVID-19 public health emergency.”

Release from Governor Healey’s office, Healey Adds $734 Million To Expanding Spending Agenda, *State House News, March 17, 2023

“We know it’ll be a transition for people to go from not paying any premiums for their health coverage to potentially have to paying some premium. So, we don’t want people to assume they can’t afford it. We want people to come check out their options.”

Health Connector Executive Director Audrey Morse Gasteier, Blue Envelopes Signal Start of Big Health Insurance Project, *State Health News, March 9, 2023

“CMS should adopt strong nursing staff-to-resident ratios to ensure workers are not overburdened and unable to meet their patients’ needs, it is clear that chronic understaffing contributes to high rates of stress, injury, and burnout among nursing assistants, and ultimately to high rates of turnover. Thus, we believe that creating a robust staffing standard will also go a long way towards improving the quality of nursing home jobs, which in turn will actually help attract more workers and resolve current workforce shortages in this industry.”

Letter by U.S. Representative Lloyd Doggett (D-TX) and Jan Schakowsky (D-IL) and signed by 113 representatives, ‘Imperative’ to finalize staffing rule this year, dozens of House members tell CMS, McKnight’s Long-Term Care News, March 20, 2023

The average weekly pay for a travel nurse in January was $3,077 – 67% higher than the rate in January 2020, according to a report by Vivian Health posted to Becker’s Hospital Review. The average weekly pay jumped 99.5% from January 2020 ($1,896 per week) to December 2021 ($3,782 per week). But the wages reached a “new floor” in July 2022 when they hit $2,997 per week. . . Even more drastic, Brendan Williams, president and CEO of the New Hampshire Health Care Association, told McKnight’s in December 2021 that while nursing homes were offering $17 per hour, plus shift differentials for nursing assistants, staffing agencies were paying as high as $69 per hour, plus charging facilities agency fees on top of that.

Many states now looking at price-gouging legislation to combat soaring staffing agency nursing costs, McKnight’s Long-Term Care News, March 20, 2023

March 13, 2023

“This is outrageous. [The Northeast Health Group facilities in western Massachusetts] should be able to continue operating [under state control] while there is a more deliberate, more careful, more rational, more caring way to empty the buildings.”

Paul Lanzikos, Coordinator, Dignity Alliance Massachusetts, ‘This is outrageous’: Advocates urge state to take control of four nursing homes slated to close, *Boston Globe, March 9, 2023 (updated)

“Transitioning residents with complex medical and emotional needs is a delicate process, and transfer trauma is a major concern with residents who have been haphazardly placed. “Some residents may not survive this transition, or may suffer physically, emotionally, and socially.”

Stavros Center in its complaint to the Massachusetts Dept. of Public Health, ‘This is outrageous’: Advocates urge state to take control of four nursing homes slated to close, *Boston Globe, March 9, 2023 (updated)

“They told us if we didn’t find a place for a loved one, they would relocate them, and it could be on the Cape, it could be Pittsfield, wherever there was a bed. . . A lot of staff jumped ship right away. They kept trying to bring in staff from agencies, but a lot of times they were short staffed and if a loved one wasn’t there to watch out, forget it. . . I would like to see things revamped and people being treated more like human beings.”

Judy, whose 86-year-old father moved out of Willimansett West in Chicopee, ‘This is outrageous’: Advocates urge state to take control of four nursing homes slated to close, *Boston Globe, March 9, 2023 (updated)

“The company [Northeast Health Group] has been very silent with us, very silent with the state. They won’t let us do our jobs.”

Crystal Bouchie, business representative for United Food and Commercial Workers Union Local 1459 in Springfield commenting on the closure of four nursing homes in western Massachusetts, Union says company shuttering Hampden County nursing homes is ghosting employees, Mass.com, March 10, 2023

Guardianships have a bad reputation. Guardians are far too easy to appoint, often have more power than they need, and may become too greedy, failing to protect the people they are guarding. The problem is lack of oversight.

Modern Laws and Out-of-Court Solutions Can Advance Guardianship, Bloomberg Law, March 9, 2023

It’s said that when the only tool you have is a hammer, you tend to see every problem as a nail. Plenary guardianship has long been seen as the law’s hammer to deal with the “problem” of the alleged incapacity of people with disabilities and older persons. Even when guardianship functions well—and stories of financial, emotional, and other forms of abuse show it often doesn’t—it can deny the right of adults with disabilities to make their own decisions, with or without support.

Courts Must Revamp Approach to Guardianship, a Potent Legal Tool, Bloomberg Law, March 9, 2023

Supported decision-making, which originated in British Columbia, has achieved increasing recognition in US legislation and court decisions. It is a far more appropriate tool for the toolbox than guardianship.

Courts Must Revamp Approach to Guardianship, a Potent Legal Tool, Bloomberg Law, March 9, 2023

“The [guardianship] system is a profit center. It is not benevolent. It is not altruistic.”

Rick Black, a former corporate executive who has become a full-time guardian reformer, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023

“I guess I was an idealist. I thought the judge was going to listen to me and weigh the evidence and be fair.”

Lorraine Mendiola, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023

“People are rendered to a state of non-personhood, in the name of protection.”

Morgan Whitlatch, Center for Public Representation, Guardians’ Dark Side: Lax Rules Open the Vulnerable to Abuse, Bloomberg Law, March 6, 2023

“We want to do everything we can to make it easy for patients and their families. It’s so, so important and making people travel huge distances doesn’t get you there. We have got to make sure that’s resolved in the right way.”

Massachusetts Governor Maura Healey responding to the closure of four western Massachusetts nursing homes, Governor Healey weighs in on proposed western Massachusetts nursing home closures, WWLP-TV 22News, March 10, 2023

Lawyers and advocates estimate there are at least 3,000 such “unbefriended” people — most are older adults, though some are younger with brain injuries, intellectual disabilities, or mental health problems in need of a guardian.

Who will be guardians for legions of ‘unbefriended’ elders? A new initiative tries to address an urgent and growing problem in Mass. *Boston Globe, February 27, 2023

The unpaid care provided by the 780,000 caregivers in Massachusetts is valued at $15.1 Billion.

Family Caregivers in Massachusetts Provide $15.1 Billion in Unpaid Care to Loved Ones, AARP, March 8, 2023

“Independently living, with dignity and respect, supported by jobs that pay a living wage, is the only future I’m going to accept.”

State Senator Lydia Edwards, ‘Fighting for my life’: Disability advocates call for higher wage for PCAs, WGBH, March 2, 2023

“PCAs are literally my lifeline. The work that my PCA does is not easy. It’s close, personal, intimate care.”

Dan Harris, who works in the community living advocacy program at the Boston Center for Independent Living, Personal-care attendants fight for higher wages, *Boston Business Journal, March 7, 2023

March 6, 2023

“Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example. It is not a tragedy to me that I’m living in a wheelchair.”

Judy Heumann, Activist Judy Heumann led a reimagining of what it means to be disabled, NPR All Things Considered, March 4, 2023

“Judy Heumann was a trailblazer – a rolling warrior – for disability rights in America. After her school principal said she couldn’t enter Kindergarten because she was using a wheelchair, Judy dedicated the rest of her life to fighting for the inherent dignity of people with disabilities.”

President Joe Biden, Biden remembers disability rights activist Judith Heumann as ‘rolling warrior’, The Hill, March 5, 2023

“Today’s authorization of the first OTC test that can detect Influenza A and B, along with SARS-CoV-2, is a major milestone in bringing greater consumer access to diagnostic tests that can be performed entirely at home.”

Jeff Shuren, M.D., J.D., director of the FDA’s Center for Devices and Radiological Health, FDA Authorizes First Over-the-Counter At-Home Test to Detect Both Influenza and COVID-19 Viruses, U. S. Food and Drug Administration, February 24, 2023

Fueled, in part, by the devastating COVID-19 death toll in nursing homes, leaders in some states are not waiting for federal action to ensure public dollars do not pay for poor care. New York, for instance, set requirements for how Medicaid payments could be spent. When more than 200 nursing homes sued the state to block the new law, they revealed budget details usually hidden from the public and regulators. One fact stood out: The homes spent most of their government Medicaid funding on expenses other than face-to-face care of residents. In total, the group would have had to return $511 million to the state in 2019 had a key requirement of the new law been in effect: that 70% of Medicaid be spent on direct care.

Biden wants more nursing home staff; owners say they need more funding, USA Today, March 3, 2023

“This way of paying and supporting nursing home care in this country is completely broken. From an industry perspective, this is a flawed model: overpaying with one public payer and underpaying with the other and hoping for the best.”

David Grabowski, a Harvard University researcher and member of the congressional Medicare payment commission, Biden wants more nursing home staff; owners say they need more funding, USA Today, March 3, 2023

“Nursing homes should protect the health and well-being of every resident. . . This case demonstrates that we will hold responsible people accountable when they pocket federal funds while providing substandard care.”

Carla Freedman, United States Attorney for the Northern District of New York, Attorney General James Secures Over $7.1 Million from Former Saratoga County Nursing Home for Years of Fraud and Neglect, Office of the New York Attorney General, February 27, 2023

“I don’t think we should be thinking of 90-plus or even 100 as extreme aging anymore. We should be helping people prepare for this longevity.”

Michael “Mick” Smyer, a clinical psychologist and national expert on aging. When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023

“More than 90 percent of centenarians are functionally independent in their early nineties. … Semi-super-centenarians (ages 105-109 years) and [especially] supercentenarians (age 110+), usually delay such age-related diseases towards the ends of their lives”; and “a substantial proportion of centenarians live with age-related diseases usually associated with significant mortality, for more than 20 years.”

Dr. Thomas Perls, an international expert on longevity with Boston University Chobanian & Avedisian School of Medicine, When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023

“A group of 7-year-olds are more alike than a group of 77-year-olds. With increasing age comes increasing individual differences.”

When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023

Aaliyah sang (and then, sadly, demonstrated when she died at 22), “Age ain’t nothing but a number.”

Aaliyah, a singer who died at age 22, When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore,*Boston Globe, February 19, 2023

“The fact that Norman Lear just turned 100 is the least of his accomplishments. Lots of people do it. You turn on the Today show and you see a bunch of folks celebrating their centennial. . . . Congratulations on your first hundred, my friend.”

George Clooney, When it comes to aging, 90-plus or even 100 might not be ‘extreme’ anymore, *Boston Globe, February 19, 2023

“The Governor’s proposal is a strong, welcome initiative which we hope turns the tide in our present crisis.”

Maura Sullivan, Senior Director, The Arc of Massachusetts, Disability Advocates Hope Healey Budget “Turns the Tide” On Staffing Crisis, *State House News, March 2, 2023

“PTSD Coach is an exceptionally valuable tool that allows you to tell your own story to yourself. You have to go through the bad stuff to get to the story. And even if you only tell your story to yourself, that’s a lot better than not telling it at all.”

Veteran Army Captain John Kirby IV, Veteran uses PTSD Coach app to cope, Veterans’ Health Care, March 2, 2023

“A Disability Justice framework understands that all bodies are unique and essential, that all bodies have strengths and needs that must be met. We know that we are powerful not despite the complexities of our bodies, but because of them.”

Patty Berne, disability rights advocates, Disability Justice—in the Workplace (and Beyond), Non-Profit News | Nonprofit Quarterly, February 28, 2023

“Disability justice really comes about because traditional disability rights movements did not center or didn’t center as well the experiences and perspectives of queer, trans, Black, Indigenous, people of color, immigrants, and women. And that’s important, and the list is long for a reason, because it is a call-in to members of the community that had not been in the leadership roles and the decision making in the public leadership as much. It’s critical to have that leadership and opportunity component center folks that have been historically excluded. People with disabilities deserve respect, dignity, and genuine inclusion.”

Adela Ruiz, program and grants lead at the NBA Foundation, Disability Justice—in the Workplace (and Beyond), Non-Profit News | Nonprofit Quarterly, February 28, 2023

It’s never too early to start thinking about how your home can adapt to meet your changing needs over time, as well as what modifications might be required to make it safer, easier to use and more accessible. “And remember that you can make these changes and still maintain the style of your home. A safe home will increase its value and be more comfortable and more accessible for you, for other seniors who visit you, and for family members of all ages.”

Melissa Birdsong, an interior designer and the board chairwoman of Raleigh Village East, a nonprofit organization focused on helping people age in place, 9 tips for creating a home that is safe for aging in place, Washington Post (free access), February 6, 2023

February 27, 2023

“As the climate crisis continues to cause an increase in severe weather events, greater strain is going to be placed on those that care for the most vulnerable. This report [“Left in the Dark”, issued by the Senate Finance Committee and Senate Special Committee on Aging] is a case study of just one in an increasing number of circumstances where elderly or infirm Americans are subjected to difficult conditions due to severe weather. Whether it’s a winter storm, hurricane or wildfire, more must be done to ensure long-term care facilities are adequately prepared to handle these events and care for their residents.”

Senate Finance Committee Chair Ron Wyden, D-Ore., Left in the Dark, Senate Finance Committee and Senate Special Committee on Aging, February 23, 2023

Unwinding [from the special provisions stemming from the COVID-19 public health emergency] will be an immense challenge for Medicaid agencies and enrollees. But states have proven strategies and solutions at their disposal and can take action to minimize coverage losses among eligible enrollees.

States Must Act to Preserve Medicaid Coverage as End of Continuous Coverage Requirement Nears, The Center on Budget and Policy Priorities, February 6, 2023

Most public housing authority policies are even more exclusionary than the federal regulations require, needlessly denying housing assistance to those likely to need it most.

How your local public housing authority can reduce barriers for people with criminal record, Prison Policy Initiative, February 15, 2023

Many of last night’s SAG (Screen Actors Guild) Awards’ most heartfelt—and viral—moments came from Michelle Yeoh, 60, and Jamie Lee Curtis, 64, who took home best lead actress and best supporting actress for Everything Everywhere All at Once. And never change, Jennifer Coolidge (61). As our 50 Over 50 franchise says, success has no age limit.”

SAG Awards’ Best Moments—From ‘Nepo Babies’ To Jenna Ortega And Aubrey Plaza Joining Forces, Forbes Daily, February 27, 2023

Health-related social needs (HRSN) are an individual’s unmet, adverse social conditions (e.g., housing instability, homelessness, nutrition insecurity) that contribute to poor health and are a result of underlying social determinants of health (conditions in which people are born, grow, work, and age). To expand opportunities for states to use Medicaid to address health-related social needs, CMS recently issued new guidance that builds on guidance released in 2021.

A Look at Recent Medicaid Guidance to Address Social Determinants of Health and Health-Related Social Needs, Kaiser Family Foundation, February 22, 2023

“[CMS] is supportive of increasing pre-release services for the justice involved populations and of supporting individuals’ transitioning from institutional settings back into the community, and will continue to work with the state on this component of its proposal.”

Section 1115 Waiver Watch: Approvals to Address Health-Related Social Needs, Kaiser Family Foundation, November 15, 2022

“This is very devastating to Western Massachusetts. I don’t know who to blame more: the administration at the nursing home, or the legislators, or the [state health department]. I don’t know who the real culprit is.” Right now, “I am hoping Mom survives the move.”

Edward Czepiel, a retired Chicopee deputy fire chief who  98-year-old mother was Willimansett Center East in Chicopee which is closing, ‘It’s flooding an already completely congested market.’ Nursing home closures in Western Mass. leave families and hospitals scrambling. Boston Globe, February 26, 2023

“People block it out and memory hole it, but we can’t continue to memory hole something that killed hundreds of thousands of people and continues to kill thousands each week.”

Jennifer Ritz Sullivan, whose mother, Earla Dawn, died due to COVID-19, Salem News, February 23, 2023, Lawmakers consider COVID-19 memorial day

“The loved ones we’ve lost to COVID-19 and those severely harmed by the pandemic — people living with Long Covid and those grieving losses — deserve recognition by the federal government. Memorialization and recognition are essential to the process of healing and recovery.”

Marked by Covid advocacy group statement, Salem News, February 23, 2023, Lawmakers consider COVID-19 memorial day

“It’s considered a violation of the ADA to unnecessarily keep people with disabilities warehoused in institutional settings when people could safely live in a more integrated setting in the community.”

Deborah Filler, Greater Boston Legal Services,  A lawsuit could force the state to help thousands of people with disabilities find housing, WGBH, January 26, 2023

“I’m unable to get out, walk around the community. I’m unable to do my own food shopping. I’m unable to do my own laundry. I haven’t seen a full moon in years. You know, those are things that go into making a wholesome life.”

John Simmons, age 74 who is a nursing home resident in Everett and s plaintiff in Simmons v. Commonwealth, A lawsuit could force the state to help thousands of people with disabilities find housing, WGBH, January 26, 2023

Some closures of low-quality homes [are] warranted, but it should be done rationally.

Paul Lanzikos, Coordinator, Dignity Alliance Massachusetts, Three- and four-bed nursing home rooms should be phased out, Boston Globe, February 21, 2023 (updated)

February 20, 2023

“I wouldn’t put a dog in Villages. A dog would get better care than he did.”

Margarette Volkmar, the wife of one of the facility’s residents, Nursing home owners drained cash while residents deteriorated, state filings suggest, NPR Shots, January 31, 2023

The very fact that this essential and sensitive social function [i.e., nursing home care], which ought to be the domain of health professionals and charitable enterprises, is now called an “industry” reflects a total perversion of its purpose.

Would Nursing Home Profiteers Kill Granny to Boost Earnings?, The National Memo, February 20, 2023

You can compare the issue [of a rapidly aging population] to how people used to view climate change: It was happening for many years, but we weren’t paying attention. Societies need to plan for aging, and they’re not well set up to do so. It’s not an in-your-face crisis — it’s a slow-rolling crisis.

Senior societies, *New York Times, February 18, 2023

New York state records show nearly half the state’s 600-plus nursing homes hired real estate, management and staffing companies run or controlled by their owners, frequently paying them well above the cost of services. Meanwhile, in the pandemic’s height, the federal government was giving the facilities hundreds of millions in fiscal relief.

Nursing home owners drained cash while residents deteriorated, state filings suggest, NPR Shots, January 31, 2023

“When you see quality of care decline after an ownership change, the question needs to be asked: What’s going on with the finances?”

Lindsay Heckler, a supervising attorney at Center for Elder Law & Justice in Buffalo, NY, Nursing home owners drained cash while residents deteriorated, state filings suggest, NPR Shots, January 31, 2023

“I never visited Arkansas, and I had no personal connection with the day-to-day operation of any of the nursing homes in Arkansas. The tragedy that had befallen Zelma Grissom was not my fault. I had no control or [oversight] at the premises and I was simply an investor and had no management role in the nursing home at all.”

Joseph Schwartz, the New York state owner of the failed nursing home chain, Skyline Health Care, which at one point owned and operated as many as 114 nursing homes in 11 states including five in Massachusetts, Arkansas court awards $15.7M judgment against nursing home chain over woman’s death, Arkansaw Democrat Gazette, February 19, 2023

“[State Representative  Jon Santiago’s] public health expertise and military service make him uniquely qualified to serve as Massachusetts’ first ever Secretary of Veterans’ Services. I’m confident that he will be the leader our veterans need and deserve and will always stand up for their health, safety and wellbeing.”

Gov. Maura Healey, Healey Taps Rep. Santiago for Veterans’ Cabinet Post, State House News, February 17, 2023

“Frontline providers and advocacy organizations have been doing heroic work to provide for families arriving in Massachusetts, but they need continued funding and support.”

Lt. Gov. Kim Driscoll, Healey-Driscoll Administration Files $282 Million Supplemental Budget Bill proposes funding for immediate emergency shelter needs and food security, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, January 31, 2023

“The Healey-Driscoll administration should be commended for moving quickly to elevate Veterans’ Services as a standalone agency with direct report to the Governor. . . The Disabled American Veterans look forward to working with him to serve and support our veterans and their families.

Coleman Nee, former Massachusetts Secretary of Veterans’ Services (2011-2015) and National Line Officer for Disabled American Veterans, Governor Healey and Lt. Governor Driscoll Appoint Rep. Jon Santiago as First Cabinet-Level Veterans’ Secretary, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, February 17, 2023

Why hasn’t the Department of Developmental Services created regulations, policies, guidance, orientation, or amend a home- and community-based waiver to meet the requirements outlined in the 2014 law [https://tinyurl.com/RealLivesLaw] ?

Susan Nadworny, Chair, MA Families Organizing for Change, Real families need Real Lives law enforced, *Boston Globe, February 20, 2023

The nursing home workforce is at levels not seen since 1994.

Long Term Care Jobs Report, American Health Care Association / National Center for Assisted Living, January 2023

Workforce shortages are causing more than half of nursing homes nationally to limit resident admissions.

American Health Care Association, Health care vaccine mandate remains as some push for an end, AP News, February 19, 2023

“The message seems to be, ‘We’re doing great, but everything is getting worse’ [within the Social Security Administration]. The phone service is to the point where I’m telling clients to just go down to the field office in person. You may have to wait two to three hours, but at least you’ll be talking to someone.”

Charles Hall, a disability attorney in Raleigh, N.C., and founder of a blog on Social Security operations, Social Security services to worsen despite budget boost, agency head says, *Washington Post, February 18, 2023

“We must address the significant number of people who are waiting too long for important disability decisions at all levels of the disability process. In particular, we share claimants’ frustration about waiting over seven months on average for an initial disability decision.”

Kilolo Kijakazi, acting Social Security commissioner, Social Security services to worsen despite budget boost, agency head says, *Washington Post, February 18, 2023

“It looks like things are going from bad to worse, and I’m very worried.”

Kathleen Romig, director of Social Security and disability policy at the nonpartisan Center on Budget and Policy Priorities, Social Security services to worsen despite budget boost, agency head says, *Washington Post, February 18, 2023

“There are so many who passed away due to not getting the medical care they needed. Most of these people, they didn’t go in there with death sentences, but they’re dying.”

Teresa Bebeau, whose imprisoned friend died from complications of Covid and cancer in South Carolina, As the Pandemic Swept America, Deaths in Prisons Rose Nearly 50 Percent, New York Times (free access), February 19, 2023

In 2009, about 10 percent of all prisoners were 50 or older; by 2019, that number had jumped to 21 percent, according to the Justice Department.

As the Pandemic Swept America, Deaths in Prisons Rose Nearly 50 Percent, New York Times (free access), February 19, 2023

“You have people just locked up alone for months. If they didn’t have a mental health condition to start with, they certainly do by the end of that.”

Hayden Smith, a criminal justice professor at the University of South Carolina, As the Pandemic Swept America, Deaths in Prisons Rose Nearly 50 Percent, New York Times (free access), February 19, 2023

Eat breakfast like a king, lunch like a prince and dinner like a pauper.

Want to live a longer life? Try eating like a centenarian, *Washington Post, February 14, 2023

Let the sparrow find a home, and the swallow, her nest.

Jerry Halberstadt, Stop Bullying Coalition, Even the sparrow has found a home, Salem News, February 8, 2023

Massachusetts must address persisting inequities and staggering COVID-19 death rates (more than 22,000 in total and nearly 4,700 Massachusetts COVID-19 deaths since the start of 2022), borne disproportionately by older adults, chronically ill and disabled people, and Black and brown communities.

Dr. Lara Jirmanus, Massachusetts Coalition for Health Equity, Carlene Pavlos, Massachusetts Public Health Association, Paul Lanzikos, Dignity Alliance Massachusetts, Equity must be driving force of ongoing Mass. public health policy, Boston Globe, February 14, 2023

February 13, 2023

The demographic divide reflects a debate that continues as the pandemic wears on: What responsibility do those at lower risk from the virus have to those at higher risk — not only older people, but those who are immunosuppressed or who have chronic conditions?

For Older Americans, the Pandemic Is Not Over, New York Times (free access), February 12, 2023 (updated)

“I don’t think people understand how Covid affects older Americans. In 2020, there was this all-in-this-together vibe, and it’s been annihilated. People just need to care about other people, man. That’s my soapbox.”

Vic Caretti, son of Aldo Caretti, a 85-year-old man who died of Covid in December 2022, For Older Americans, the Pandemic Is Not Over, New York Times (free access), February 12, 2023 (updated)

The Covid-19 pandemic will not be without continuing costs. A pre-pandemic normal is unattainable in the short term, no matter how urgently we desire it. The questions for policymakers are these: how high will we allow the societal costs to be, and who will bear the greatest costs? Universal masking policies distribute a small cost across society, rather than shifting the highest burdens of Covid-19 onto populations that have already been made vulnerable by structural racism and other inequities.

Universal Masking Policies in Schools and Mitigating the Inequitable Costs of Covid-19, New England Journal of Medicine, November 24, 2023

Homelessness is an increasingly salient policy issue across all levels of government—as well as a contentious political one. While urban communities and their representatives often frame the issue in terms of public safety, substance use, and mental health, some policy researchers emphasize the relationship between homelessness and housing markets.

Housing Supply and the Drivers of Homelessness, Bipartisan Policy Center, February 7, 2023

“As the proud daughter of a Navy veteran, I understand how important it is that our veterans receive comprehensive services and care.”

Lieutenant Governor Kim Driscoll, Healey-Driscoll Administration Announces Appointments to the Veterans’ Homes Council, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, February 8, 2023

“An abrupt end to the emergency declarations would create wide-ranging chaos and uncertainty throughout the health care system — for states, for hospitals and doctors’ offices, and, most importantly, for tens of millions of Americans.”

The White House said in a statement.

“Nursing homes, like all our healthcare, are prime examples of Intersectionality of ‘isms’.” ~Susan Friedman

“Action by advocates and Resident Reps. etc. is met with us being called ‘troublemakers and complainers,’ met with retaliation and intimidation. There is no one to help us. Why not?” ~Karen Klink

“We need a public outcry and we need to demand meaningful changes NOW. We will impact quality of life for people living in nursing homes – and we need everyone to join us!” ~Alice Bonner

“The head social worker came to see me yesterday and was very irate that two ombudsmen came to see me this week due to a few things that have happened lately. I was told not to pay any attention to what they told me.” ~Sharon Wallace

“My action plan includes changing the negative words ‘Nursing Home’ to a positive ideal of ‘Care Centers’.”~Cindy Napolitan

The above quotes are drawn from the webcast, Solutions to Ageism in Nursing Homes, produced by the Gray Panthers of NYC

February 6, 2023

“The 100-year life is here. We’re not ready.”

The Stanford Center on Longevity, The long-life paradox, DealBook – New York Times, January 21, 2023

Addressing the failures of the health care system will require uncomfortable reflection and bold action. Any illusion that medicine and politics are, or should be, separate spheres has been crushed under the weight of over ‌‌1.1 million Americans killed by a pandemic that was in many ways a preventable disaster. And many physicians are now finding it difficult to quash the suspicion that our institutions, and much of our work inside them, primarily serve a moneymaking machine. . . To be able to build the systems we need, we must face an unpleasant truth: Our health care institutions as they exist today are part of the problem rather than the solution.

Doctors Aren’t Burned Out from Overwork. We’re Demoralized by Our Health System. *New York Times, February 5, 2023

The indictment alleges that the scheme operated from January 2015 to September 2018. The indictment charges the defendants with health care fraud, six counts of wire fraud, three counts of mail fraud, conspiracy to commit tax fraud, and conspiracy to commit money laundering.

New Jersey Man and Company Operating Nursing Homes and Assisted Living Facilities in Wisconsin Charged with Health Care Fraud, U. S. Department of Justice, February 2, 2023, [Editor’s note: CareOne operates 14 nursing homes in Massachusetts]

As a nation we are no longer preparing for an historic demographic shift—we are, in fact, deeply immersed in the opportunities, challenges, realities and necessities of a society with a rapidly growing number of older adults. And COVID-19’s tragedies have only brought the varied needs of this population even more to the forefront. This demographic reality must inform policy debates and decisions across a spectrum of critical issues.

Policy Priorities 2022, USAging

Direct care workers in our community can make more money flipping burgers. Those that stay are facing burnout due to being overworked.

CAREGIVER NEEDED: How the Nation’s Workforce Shortages Make It Harder to Age Well at Home, USAging, Undated

“We have no illusion that this will be beautiful or graceful, but we will be doing everything we can not to lose anyone in the process.”

Dana Hittle, Oregon’s interim Medicaid director, speaking about the so-called Medicaid unwinding, As pandemic-era Medicaid provisions lapse, millions approach a coverage cliff, Kaiser Health News, February 5, 2023

Iowa’s Health Department fined the [nursing care] center [which declared a resident dead who was discovered breathing at the funeral home] $10,000 for two violations, which included a rule that says care homes must preserve the dignity of residents.

A Patient Declared Dead Is Found in a Body Bag Gasping for Air, *New York Times, February 5, 2023

“We do think that immigrants are critical to this workforce and the future of the long-term care industry. We think the industry would probably collapse without them.”

Robert Espinoza, executive vice president of policy at PHI, As long-term care staffing crisis worsens, immigrants can bridge the gaps, WUSF Public Media,  February 5, 2023

“Immigration policy is long-term care policy. If we really want to encourage a strong workforce, we need to make immigration more accessible for individuals.”

David Grabowski, professor of health care policy at Harvard Medical School, As long-term care staffing crisis worsens, immigrants can bridge the gaps, WUSF Public Media,  February 5, 2023

The massive real estate substrate of industrialized medical care is draining resources from care.  There is no rational justification for exceedingly low pay, and poor care when so few are making so much from the trillions of dollars poured by Americans into the health care system.

Dave Kingsley, THE ENSIGN GROUP 4TH QUARTER REPORT:  MARVELOUS IF YOU ARE AN INVESTOR (BUT NOT IF YOU ARE AN EMPLOYEE AND/OR A TAXPAYER), Tallgrass Economics, February 4, 2023

Consequently, the nursing home system remains a closed system that is troubling to most Americans, but they can’t articulate the financial machinations responsible for the lack of investment by corporations in an adequately paid workforce and quality of care.  Absence of openness in a complex social system funded by government inevitably leads to the bigger problem of corruption.

In 2016, the General Accounting Office Makes Recommendations Regarding Accurate and Reliable Nursing Home Financial Reports:  HHS Says “Thanks, but No Thanks.”, Tall Grass Economics, February 4, 2023

January 30, 2023

“[P]redicting future revenue figures can be a difficult process in normal times. Given the volatile economy we find ourselves in, this will be an especially challenging endeavor.”

House Ways and Means Chairman Aaron Michlewitz, Analysts See Tax Revenues Holding at Elevated Levels, State House News, January 24, 2023

“I’m able to groom myself without help. I can cook. I can clean. I might not do it all fast and everything as some people can, but I can do it.”

John Simmons, who is 74 years old and stuck in a nursing home because he can’t find an affordable accessible place where he can live, ‘Warehoused’, All Things Considered – WGBH, January 26, 2023

“It’s considered a violation of the Americans with Disabilities Act to unnecessarily keep people with disabilities warehoused in institutional settings when people could safely live in a more integrated setting in the community.”

Deborah Filler, a lawyer with Greater Boston Legal Services, one of the groups representing the plaintiffs in a federal class action lawsuit, ‘Warehoused’, All Things Considered – WGBH, January 26, 2023

“Right now, the workforce challenge is really hard … so those barriers are there [for persons to leave the nursing home]. If they’re in a nursing home for too long, and they lose their housing, that’s even more difficult because we have to try to find them housing. And there’s just not a lot of accessible affordable housing in Massachusetts.”

Lisa Gurgone, CEO of Mystic Valley Elder Services, ‘Warehoused’, All Things Considered – WGBH, January 26, 2023

Homelessness pummels the body. “Fifty is the new 75” when it comes to people without a permanent place to reside. ​

Margot Kushel, M.D., a professor at the University of California San Francisco who has led longitudinal studies on unhoused, older adults, The Graying of America’s Homeless: An Alarming Trend, AARP, December 20, 2022 (updated)

What most patients want is to understand their present situation and to have a clear vision of the goals of care delivered in a thoughtful way—one that allows them to trust the information and maintain their dignity.

Dr. Kenneth Scott, CEO and founder of SilverSage Management Services, providing physicians and consulting to the long-term care industry, How Nursing Homes Can Increase Accountability And Improve Quality Of Care, Forbes, January 27, 2023

“Although the original vaccination campaign in nursing homes was highly successful in bringing down case and death rates, and mandates led to staff vaccination rates exceeding the thresholds we found for high effectiveness, these policies cannot remain stagnant. As the pandemic evolves, staff vaccination mandates need to evolve as well.”

Up to 50% Higher Infection Risk for Nursing Home Residents Without Boosters, Skilled Nursing News, January 27, 2023

More than 30 states allow CNAs to act as medtechs and pass out medications to residents. It’s one of the few things the state can do immediately to address the staffing shortage.

Cautionary Tale: Staffing Mandate Collides with Nursing Home Labor Crisis and Referral Bottleneck, Skilled Nursing News, January 27, 2023

“For [former State Representative] Alice [Wolf of Cambridge], seeing the dignity of another human being wasn’t a process, it was something that was always intuitive. She modeled what’s possible in terms of caring about the well-being of others and standing up and translating that into better policies.”

State Representative Marjorie Decker, Former Cambridge mayor Alice Wolf, an advocate for refugees and LGBTQ equality, dies at 89, *Boston Globe, January 29, 2023

While some brides obsess over their dress, or shoes, or earrings — Sara Hughes wanted “a really cool arm.”

A Bride’s Prosthesis Made Not to Blend In, but to Shine, *New York Times, January 27, 2023

The ratio of grandparents to children is higher than ever before. That has big consequences.

The age of the grandparent has arrived, *The Economist, January 12, 2023

“Risk starts to go up well below levels where people would think, ‘Oh, that person has an alcohol problem’. Alcohol is harmful to the health starting at very low levels.”

Dr. Tim Naimi, director of the University of Victoria’s Canadian Institute for Substance Use Research, Even a Little Alcohol Can Harm Your Health, *New York Times, January 13, 2023

Negotiating a pathway out for many of the 20,000 Bay Staters would send a powerful signal to one of the most marginalized populations—people with disabilities in nursing facilities, many of whom are from communities of color. It would also build trust with community partners who excel at coming up with creative solutions to these very challenges.

Avoid unnecessary institutionalization in nursing homes, CommonWealth Magazine, January 27, 2023

But as much as everyone loves the imaginary Hollywood spectacle of a big courtroom battle over legal rights, the best move is to negotiate and settle this lawsuit.

Avoid unnecessary institutionalization in nursing homes, CommonWealth Magazine, January 27, 2023

“The extra COVID SNAP benefits have provided critical support for individuals and families to buy food, and have also indirectly supported our local grocery stores and farmers. The Healey-Driscoll Administration is aiming to be a leader among states in providing households with an offramp to the abrupt end of these extra benefits and will continue to be a food security leader through systemic initiatives like this.”

Acting Health and Human Services Secretary Mary Beckman, Healey-Driscoll Administration Files $282 Million Supplemental Budget, Office of Governor Maura Healey and Lt. Governor Kim Driscoll, January 30, 2023

Hospitals aren’t even the ideal places to heal, oftentimes. Infections spread among patients, occasionally with fatal results. The constant alarms and beeps made by all the monitors and machinery interrupt sleep and recovery. Older patients in particular become agitated and confused by the disruptions. Some patients have to go through rehabilitation afterward, having been confined to a hospital bed for so long. It’s no wonder that both patients and clinicians alike might want an alternative to traditional hospital care.

Your Next Hospital Bed Might Be at Home, New York Times (free access), January 27, 2023 (updated)

January 23, 2023

“People in nursing homes deserve safe, high-quality care, and we are redoubling our oversight efforts to make sure that facilities are not prescribing unnecessary medications.”

Chiquita Brooks-LaSure, administrator of the Centers for Medicare and Medicaid Services, Nursing Homes’ Use of Schizophrenia Drugs to Be Audited by U.S. Government, Wall Street Journal, January 19, 2023

“The nursing home industry has used for decades these antipsychotic medications as a way to sedate our most frail and vulnerable citizens. This is an issue that could have been remedied. Many lives would have been saved if CMS had done their job, through different administrations.” 

Martha Deaver, an Arkansas-based advocate for nursing-home residents and their families, Nursing Homes’ Use of Schizophrenia Drugs to Be Audited by U.S. Government, Wall Street Journal, January 19, 2023

“President Biden issued a call to action to improve the quality of America’s nursing homes, and HHS is taking action so that seniors, people with disabilities, and others living in nursing homes receive the highest quality care. No nursing home resident should be improperly diagnosed with schizophrenia or given an inappropriate antipsychotic. The steps we are taking today will help prevent these errors and give families peace of mind.”

Health and Human Services Secretary Xavier Becerra, CMS to Publicly Post Disputed Nursing Home Citations, Tighten Antipsychotic Oversight and Penalties, Skilled Nursing News, January 18, 2023

“Antipsychotic drugs are too often used on residents with dementia because a facility is unwilling to hire sufficient staff, with the appropriate competencies, to employ non-pharmacological approaches to dementia care.”

Long Term Care Community Coalition, CMS to Publicly Post Disputed Nursing Home Citations, Tighten Antipsychotic Oversight and Penalties, Skilled Nursing News, January 18, 2023

Almost every American has been affected in some way by the COVID-19 pandemic. . . These findings make clear that nursing homes in this country were not prepared for the sweeping health emergency that COVID-19 created, nor were they able to stem the devastation once it was evident that nursing homes were especially vulnerable. Virtually all nursing homes experienced infections, and more than 1,300 nursing homes had extreme infection rates of 75 percent or higher during a surge period and an average overall mortality rate close to 20 percent.

New OIG Report on First Year of COVID-19 Pandemic Dispels Myth of Inevitability of Infection, Finds Fault with Infection Surveys, and Recommends Exploring Increased Staffing to Protect Residents from Infections, The Consumer Voice, January 19, 2023

“In some cases, these labor challenges have resulted in nursing homes permanently closing their doors.”

Data Doesn’t Lie: Current Pace Sets Nursing Home Workforce Recovery Back to 2027, Skilled Nursing News, January 19, 2023

“I understood why patients might cancel in-person visits or elective surgeries because there are so many potential points of infection associated with office or hospital-based care. I wasn’t prepared to hear about so many patients declining home-based health care services, since home-based health care is a much more controlled interaction with fewer potential points of infection.”

Jennifer Inloes, a Doctor of Nursing Practice student at the University of Michigan School of Nursing, Many older adults declined home medical care for fear of COVID, causing new or worsening conditions, Michigan News, January 18, 2023

“If you’re a younger model, in a certain way you’re not as impactful because it’s an expected situation. But for me, it makes women my age feel good about themselves and that’s very rewarding.” As a 90-year-old model her job was to communicate: “You are not the perfect person. You are simply an example of what everyone could aspire to.”

Frances Dunscombe, who began her modeling career at age 82, They’re Cover Girls. They’re in Their 70s, *Wall Street Journal, January 20, 2023 (updated)

“We prefer not to strike. We want to work, we are privileged to do what we do, but we have no leverage if it’s not on the cards.”

Anis Adnani, a second-year emergency medicine resident at the University of Illinois Chicago, where residents voted to join CIR in 2021, Medical Residents Unionize Over Pay, Working Conditions, *Wall Street Journal, January 17, 2023

“Advocating for living wages helps me be more focused on my patients, rather than worrying about if I can afford gas to get home or what I’m going to eat.”

Nicolette Alberti, a union member and second-year resident in emergency and internal medicine at UIC, Medical Residents Unionize Over Pay, Working Conditions, *Wall Street Journal, January 17, 2023

One promising means of helping patients is supported decision-making, in which an adult with cognitive impairment (called a beneficiary) identifies one or more trusted others (called supporters) to assist them in decision-making.

Supporting decision making as cognition declines, Baylor College of Medicine, January 20, 2023

The top concern to voters 65 and over, especially women, was “threats to democracy,” according to AARP.

Older Voters Know Exactly What’s at Stake, and They’ll Be Here for Quite a While, New York Times (free access), January 22, 2023

We’re not your parent’s grandparents.

Older Voters Know Exactly What’s at Stake, and They’ll Be Here for Quite a While, New York Times (free access), January 22, 2023

“The battle isn’t over,” said Jeffrey Duchin, the health officer for the public-health agency that covers Seattle and King County, who said he is concerned the U.S. isn’t pushing harder for things like improved vaccines and better indoor ventilation. “The virus is relentless; it’s not going to disappear.

U.S. Covid-19 Pandemic Enters Fourth Year with Hospitalizations on the Decline, *Wall Street Journal, January 20, 2023 (updated)

“We’ve got to really keep in perspective that we’ve seen many downstream effects of Covid and we can’t ignore them.”

Dr. Manisha Juthani, commissioner of Connecticut’s Department of Public Health, U.S. Covid-19 Pandemic Enters Fourth Year With Hospitalizations on the Decline, *Wall Street Journal, January 20, 2023 (updated)

City and state governments across the country publicly own land and houses that could be turned over to community groups.

How Housing Activists Took on Philadelphia and Won, The New Republic, March 29, 2021

“Because psychiatric units are unable to transfer patients ready for discharge into DMH continuing care beds, the psychiatric units themselves are unable to accept new patients into the inpatient psychiatric beds. This, in turn, contributes to ‘behavioral health boarding’ in hospital emergency departments and other units.”

From Massachusetts Health and Hospital Association report, Hospital Boarding Crisis Persists, Salem News, January 21, 2023

“The 100-year life is here. We’re not ready.”

Stanford Center on Longevity, The long-life paradox, New York Times – Deal Book, January 21, 2023

Age discrimination is growing more pervasive in the corporate world, and that could affect corporate productivity. “I would like to see corporations held accountable for age discrimination just as they are for every other form of discrimination. I would like companies to have to report how many people are employed at different ages so we can get a sense of, ‘Are you employing people in their 60s and 70s?’”

Lynda Gratton, a professor of management practice at London Business School and a co-author of “The Hundred-Year Life: Living and Working in an Age of Longevity,” The long-life paradox, New York Times – Deal Book, January 21, 2023

In fact, people with mental illness are much more likely to be victims of crime than perpetrators; crimes by those with a mental disorder usually have something to do with drug addiction.

Mental Illness Shouldn’t Be Kept Out of Sight, *Wall Street Journal, December 29, 2022

January 18, 2023

A minimum staffing standard will save countless lives and result in better health outcomes for nursing home residents across the country.

Why Nursing Homes Need a Minimum Staffing Standard, National Consumer Voice for Quality Long-Term Care, January 2023

“When I wake up in the morning, I never know how much energy I’m going to have because of my chronic illness.”

Fortesa Latifi, Spoon theory: What it is and how I use it to manage chronic illness. *Washington Post, January 14, 2023

“No nursing home resident should be improperly diagnosed with schizophrenia or given an inappropriate antipsychotic.”

Health and Human Services Secretary Xavier Becerra, Feds to investigate nursing home abuse of antipsychotics, AP News, January 18, 2023

Researchers across the social and medical sciences have found a strong link between mental health and green space or being outdoors. Even seeing a tree out your window can help you recover from illness faster.

The happiest, least stressful, most meaningful jobs in America, *Washington Post, January 6, 2023

To age is to live. But living well into our later years of life is not a guarantee. To do that, you need a plan.

Join the Movement: Every State Should Have a Multisector Plan for Aging, Generation – American Society on Aging, January 11, 2023

A whopping 34% of Asian Americans have experienced discrimination when seeking Alzheimer’s care.

One Size Does Not Fit All: Asian Americans and Dementia Risk, Generations – American Society on Aging, January 10, 2023

“Sometimes you have to wait two, maybe three hours to have your brief changed. You’re sitting in a wet brief for that amount of time. It’s terrible. We just feel so helpless.”

Patty Bausch, 62,resident in an Athena nursing home, Nursing home parent Athena under fire in 3 New England states, Republican American, January 15, 2023

Governments around the world are failing to adopt disability-inclusive climate adaptation and mitigation strategies, even though climate change disproportionately affects persons with disabilities.

Towards Disability-Inclusive Climate Resilience, Harvard Law School Project on Disability, January 9, 2023

Brentwood [Rehabilitation and Healthcare Center in Danvers], however, has a below-average overall rating from the federal agency on its nursing home website. The facility also scores in the bottom 4% of nursing homes in Massachusetts, according to the state’s nursing home performance tool. . . The facility has been fined four times by the federal government in the last three years for serious health or fire safety violations.

Nurse’s Aide Accused of Sex Abuse, Salem News, January 12, 2023

January 9, 2023

Anyone who has a loved one who must go to or live in a nursing home would probably agree that it is unsatisfactory to have them there. If you want change, you need to bring this to the repeated attention of your elected representatives and to ask directly for the much-needed changes.

Carolyn Rosenblatt, The Call for Nursing Home Reform: Will It Have Any Effect?, Forbes, January 5, 2023

“But I was in that nursing home and everybody was sittin’ in a chair, lookin’ out the window, starin’ into space and drooling or watchin’ TV, but nobody’s talkin’.” 

Dying patient of Dr. Jim O’Connell, who has spent his medical career caring for the homeless in Boston, ‘You Have to Learn to Listen’: How a Doctor Cares for Boston’s Homeless, New York Times (free access), January 5, 2023

Owners and operators of nursing homes and their trade associations argue that they will need more money when mandatory staffing ratios promised by the Biden Administration are implemented. Don’t believe them. . . Before nursing homes are given more public money, the Center for Medicare Advocacy urges far greater transparency and accountability for the billions of dollars that nursing homes already receive.

Toby Edelman, Executive Director, Center for Medicare Advocacy, Require Full Disclosure & Accountability for Nursing Home Reimbursement, Center for Medicare Advocacy, January 5, 2023

More than one million people live in US nursing homes and
each week, one in five of them are given dangerous
antipsychotic (AP) drugs. In most cases these drugs are
administered without clinical justification.

A Decade of Drugging, Long Term Care Community Coalition

Across states, average base Medicaid payment rates for nursing facility services varied considerably, ranging from 62 to 182 percent of the national average. . . Across facilities within states, base payment rates and costs also vary considerably. Facilities that serve a high share of Medicaid-covered residents generally have lower base payment rates but also have lower facility costs, in part because they generally have lower staffing levels than other facilities. . . Measures of base payments relative to costs vary widely, ranging from less than 70 percent of costs for 15 percent of facilities to more than 100 percent of costs for 19 percent of facilities.

Estimates of Medicaid Nursing Facility Payments Relative to Costs, Medicaid and CHIP Payment and Access Commission, January 2023

The criminal justice system and the adult living complexes entrusted with protecting these victims’ health and safety appeared to be blinded to the crimes by a fatal strain of ageism. . . “The mentality of it was, ‘They were old, and they just died.’” . . . [Jeffrey Barnard, M.D., medical examiner for Dallas County] conceded that his office rarely orders autopsies for anyone over 65. Instead, thousands of “unattended deaths” (outside a hospital with no doctor present) are handled by phone — even those involving robberies or burglaries. . . “The owners and operators [of upscale older adult communities] prioritized the profits of their private equity investors over the lives of the elderly residents they undertook to protect.”. . . Do elderly lives not matter?”

Unnatural Causes: The Case of the Texas Serial Elder Murders, AARP The Magazine, November 21, 2022

“Roughly 50% of individuals going into senior living or a SNF have elevated anxiety or depression.”

Home Health Providers Believe They Can Be The ‘Quarterback’ For Behavioral Health Needs, Home Health Care News, January 4, 2023

We must do a better job of including the voices and priorities of elders generally, and those of diverse elders especially, in public health and health policy.

Understanding Pandemic Experiences Among America’s Elders, *Health Affairs, December 2022

But unlike younger and middle-aged adults, who were allowed to disregard masking and isolation if they wanted to, vulnerable old people were stripped of agency over their options, actions, and lives. As geriatrician Joanne Lynn quipped about nursing home residents, “They were incarcerated without committing a crime and without judicial review.” We must do a better job of including the voices and priorities of elders generally, and those of diverse elders especially, in public health and health policy.

Understanding Pandemic Experiences Among America’s Elders, *Health Affairs, December 2022

Public health, by definition, does not attend to individuals, but to populations and communities. Yet public health can and, given our aging population, must incorporate geriatrics and gerontology knowledge and approaches into its structures, training, and policies if going forward they hope to avoid the harms—including protracted social isolation—unnecessarily imposed on older Americans during the COVID-19 pandemic.

Understanding Pandemic Experiences Among America’s Elders, *Health Affairs, December 2022

Older adults were far more likely to experience severe COVID-19 health outcomes in prison just as they were in the community. . . Younger adults were far more likely to be released during the pandemic—a trend similar to the pre-pandemic era. . . The challenge must be to consider the differential impact that COVID-19 has had on morbidity and mortality among incarcerated older adults.

Impact Of COVID-19 On the Health of Incarcerated Older Adults in California State Prisons, *Health Affairs, August 2022

Experts agree that it costs far more to incarcerate an elderly person than a younger one, mostly because of higher medical expenses. . . Society hasn’t quite figured out the most appropriate destination for many of the older people who are released after spending much of their lives behind prison walls.

The Aging of The US Prison Population: A Public Health Crisis, *Health Affairs, August 2022

“[Older incarcerated persons] are not only aging but developing the medical and physical problems and disabilities seen in a much more aged population. These would include diabetes, high blood pressure, heart disease, and the consequences of hepatitis and liver disease.” Causes include the accumulation of life stresses before incarceration, an overwhelmed prison health system, and the rigors of living in an environment that is both spartan and dangerous.

Dr. Brie Williams,  geriatrician and professor of medicine at the University of California San Francisco and director of the Center for Vulnerable Populations, The Aging Of The US Prison Population: A Public Health Crisis, *Health Affairs, August 2022

It shouldn’t take a Justice Department investigation to bring basic and humane reforms to the state’s prisons. . . [T]he U.S. Justice Department . . .has alleged DOC “failed to provide constitutionally adequate mental health care and supervision to incarcerated persons in mental health crisis and violated the constitutional rights” of those inmates “through prolonged restrictive housing on mental health watch.” . . So too, a better and more honest approach to medical parole than the one used in the year ending June 30, 2021, in which DOC granted only 17 of the 211 applications — and no applications of any of the 70 Black applicants. [The landmark 2018 Criminal Justice Act] was tailored to provide a humane option for people at the end of their lives,” said Mara Voukydis, an attorney heading up the parole advocacy unit at the Committee for Public Counsel Services. . . Promoting a just and humane system will make this a safer Commonwealth — and that needs to be on this governor’s agenda too.

Editorial Board, Healey’s chance to correct the corrections system, *Boston Globe, January 8, 2033

There is an unspoken and growing public health crisis in our country. For millions of Americans with serious health care needs, their treatment is not being provided at a hospital or clinic, but at the county jail. . . Consider this: 40 percent of state prisoners and 33 percent of individuals in federal correctional facilities have a chronic health condition. At [the Middlesex County Correctional] facility, 65 percent of individuals are being treated for a chronic disease, ranging from asthma and cancer to psychological disorders. . . We cannot allow more people, rehabilitated and ready for reentry, to lose their health care and potentially their lives because of an outdated, counterproductive policy. Let’s eliminate it now.

Peter Koutoujian, Sheriff, Middlesex County, Medicaid should cover the incarcerated, Commonwealth Magazine – The Upload, January 8, 2023

The odds of being sent to solitary increased by 125% for those with serious mental illness and by 172% for those with any mental illness.

Are People With a Mental Health Diagnosis More Likely to Do Time in Solitary?, Council on Criminal Justice, November 16, 2022

What is needed is a system of care advocates, with the appropriate oversight, who can step in from the beginning, know how to navigate the systems of care, and are willing to spend significant time and effort in the process.

James Lomastro, Dignity Alliance Massachusetts, Short of guardians, advocates could help patients navigate system, *Boston Globe, January 4, 2023

Unfortunately, in our society, if things become invisible, then they will disappear from our decision-making priorities, and that ought not to happen.

Paul Lanzikos, Coordinator, Dignity Alliance Massachusetts, BU Alum Calls for a COVID Day of Remembrance in Massachusetts, Bostonia, October 31, 2022

“Every nursing home resident deserves to live in a safe environment, with dignity and access to high-quality care. This resolution ensures that Athena facilities will appropriately provide care for individuals with substance use disorder and helps to restore the trust families need when making critical decisions about the care of their loved ones.”

Attorney General Maura Healey, AG Healey Secures $1.75 Million Resolution With Nursing Home Chain Over Failure To Meet the Needs of Residents With Substance Use Disorder, Office of the Massachusetts Attorney General, December 21, 2022

The covid pandemic was the worst public health catastrophe in 100 years but could easily happen again — and soon. A system of global genomic surveillance — an early warning radar for disease — ought to be a high priority.

Congress has not stepped up to fight covid-19 — or the next pandemic, Washington Post, January 8.2023

“I never like when I see anything make a dramatic jump like we have seen with XBB. This ascent is sharp and striking.”

Dr. Shira Doron, Tufts Medical Center, COVID Levels Skyrocket in Greater Boston, Much of Mass. Now High Risk, NBC Boston, January 6, 2023

“What we need to do is get booster numbers up across the board. There’s this vulnerable population out there that really needs protection from the rest of us.”

Sam Scarpino, director of artificial intelligence and life sciences, Northeastern University, Latest numbers show jump in COVID-19 deaths as expected winter surge arrives, *Boston Globe, January 6, 2023

[A]t least a dozen rooms at the home were in “terrible” condition and contained feces, dead rodents, dirt, and bugs.

In letter from Jeffrey S. Shapiro, the state’s inspector general, to Secretary of Health and Human Services Marylou Sudders, In scathing letter, state watchdog criticizes management of Chelsea veterans’ home, *Boston Globe, January 4, 2023

January 3, 2023

“There’s a workforce crisis across so many sectors right now in our state, but no sector is experiencing it more than human services and health care and the consequence of that, where people are relying on that care, is just absolutely devastating. As governor, I’m going to continue to stand up for the tens of thousands of homecare workers who are providing vital care, compassionate care, to ensure that people are able to live independently, safely and with dignity. We deprive ourselves as a commonwealth when we fail to recognize the dignity, the worth and the capacity of each person in this state.

Governor-elect Maura Healey, Healey vows to address shortage of personal care attendants, Hampshire Gazette, December 27, 2022

“I thought I was sensitive and compassionate before Jeff was injured, but I found that there’s just a whole other level of what he was experiencing that affected me profoundly.” As a parent and caregiver, “you suddenly belong to this community that you never knew you were going to be part of, and none of us probably wanted to be there.”

Judy Woodruff, Judy Woodruff on how her son with disabilities changed her view of health care, Washington Post (free access), December 29, 2022

Covering disabilities is complicated by the fact that they occur for so many reasons: genetic conditions, illness, accidents, war injuries. “Because there are so many different organizations and people advocating, it’s been hard to come together and make one case. It pits one good cause against another good cause.”

Judy Woodruff, Judy Woodruff on how her son with disabilities changed her view of health care, Washington Post (free access), December 29, 2022

Our health care system cannot function without family caregivers.

National Strategy Will Meet Caregivers’ Needs, Next Avenue, November 21, 2022

Too often, “old people” [in the United States] are regarded as useless, helpless or a nuisance, left to wind down the clock as they stare out the window, a lifetime of experiences, work, achievement, and sacrifice forgotten.

Gary Abernathy, Ageism is one form of bigotry that never seems to get old, Washington Post (free access), December 28, 2022

The government is leaving billions of dollars on the table.

The Great Big Medicare Rip-Off, The Atlantic, December 26, 2022

There are over one billion disabled people around the globe (and counting, due to Long Covid). And it’s been over thirty-two years since the signing of the Americans with Disabilities Act (ADA). So, why don’t small businesses have holiday (and year-round) marketing plans that include disabled people as a viable consumer group and valuable part of the community? The message here is that there is no welcome mat for disabled people.

Shopping Locally for the Holidays Should Be Accessible to All, The Century Foundation, Voices of Disability Economic Justice Project, December 19, 2022

“[Ending homelessness is] a complicated issue. My only observation is until the bigger resolution happens . . . it seems like well-run attempts to address this issue neighborhood by neighborhood is a reasonable step forward.”

Will Cohen, chair of the Jamaica Plain Neighborhood Council, ‘Permanent supportive housing’ may be controversial to would-be neighbors, but it’s been beneficial to those who live in it, *Boston Globe, December 20, 2022 (updated)

“We are concerned that when applied to hospice care, the private equity model of generating profit on a rapid turnaround can occur at the expense of dying patients and their families.”

Senate Finance Committee Report, Congress and Industry Leaders Call for Crackdown on Hospice Fraud, ProPublica, December 19, 2022

“I feel like standing still isn’t an option.

Mary McGeown, executive director of the Massachusetts Society for the Prevention of Cruelty to Children commenting on Massachusetts new “front door” initiative regarding behavioral health services,  The state’s ‘front door’ to behavioral health care set to open as demand for services soars, *Boston Globe, January 1, 2023