The Dignity Digest is information compiled weekly by Dignity Alliance Massachusetts concerning long-term services, support, and care. We provide direct links to featured articles below. Each digest contains many more articles on key topics including Nursing Homes, Assisted Living, Home and Community, Housing, Behavioral Health, and Covid-19 than are highlighted below.
Older Digests are found on the Digest 2020-2021 page.
Issue #101 – August 8, 2022
CommonWealth Magazine, August 4, 2022
By former State Senator Richard T. Moore, Chair Dignity Alliance Massachusetts Legislative Workgroup and Member, DignityMA Coordinating Committee
Much has been written about the legalization of Sports Betting in the Commonwealth. The introduction of this much-debated and formerly illegal past-time is a tribute to the power of the gambling industry in Massachusetts!
With the conclusion of the Legislature’s formal sessions, a bill that would have taken some of the gamble out of receiving quality care for residents of nursing homes across the state, languished for nearly two months in the House Committee on Ways and Means. The lack of movement of this vitally important bill is a testament to the power of the nursing home industry!
House Bill 4780, An Act to improve quality care and oversight in nursing homes, was crafted in, and favorably reported by, the Legislature’s own Committee on Elder Affairs – a group of thoughtful lawmakers who know a lot about the long-term care needs of older adults and people with disabilities. Senator Pat Jehlen and Representative Tom Stanley deserve great credit for developing this bill. The bill also was favorably reported by the Committee on Health Care Financing, which I once chaired.
Among many needed reforms for nursing homes, House 4780 would have:
- Improved the safety and quality of nursing home care, treating residents with DIGNITY!
- Strengthened the licensure of nursing homes to ensure reputable owners!
- Expanded workforce training to achieve consistent quality of care!
- Implemented annual audits to ensure nursing home funds are being utilized in the best interests of residents!
- Required customized outbreak response plans, including at least a part-time infection preventionist, to protect nursing home residents from ever again experiencing the devastation they suffered from the COVID-19 pandemic!
Dignity Alliance Massachusetts, a statewide coalition of advocates, supports the bill, and believes that this measure, with a few targeted changes, could have resulted in transformational change in long-term care. It might also have justified the hundreds of millions of tax dollars provided in recent years to nursing homes, the vast majority of which are for-profit, investor-owned, out of state companies with a dismal track record for providing residents with dignity and quality care! Some of these companies have even had the temerity to sue the state to prevent enforcement of a regulation that limits nursing homes to no more than two residents per room, This, despite the likelihood that higher occupancy served to spread COVID to more elders and staff.
For more than two decades various media, including both Commonwealth and the Boston Globe have detailed that tragedy of nursing home care both before, and during the pandemic. Despite such effective reporting and editorials, despite advocacy by families of residents and advocate groups like Dignity Alliance and AARP, despite the national publicity about the number of deaths in nursing homes, it is shocking that Massachusetts nursing homes have not been reformed, and that staff remain overworked and underpaid.
As a recent survey by AARP makes clear, the problems of COVID in nursing homes have not gone away and, in fact, continue to cry out for action. The survey found “The rate of resident cases increased by 27 percent in the four weeks ending June 19 compared to the previous four weeks, with about 1 out of every 35 nursing home residents testing positive for COVID-19. The rate of staff cases increased by 42 percent, with around 1 staff member for every 28 residents testing positive. More than one-third of nursing homes nationwide reported a confirmed resident case during the four weeks, while two-thirds reported a confirmed staff case.
In an apparent insult to the thousands of older adults who were sickened or died from COVID in Massachusetts during the pandemic, the Legislature even failed to pass House Bill 4672 establishing a COVID-19 Remembrance Day! How soon we’ve forgotten this tragic event should prove the need for such a day. However, in this case, there still may be time to enact the bill during informal sessions before the end of the year.
Can there be any evidence-based excuse for such a catastrophic failure from lack of care and accountability by nursing homes or the dereliction of policy makers to require action? How much longer will nursing home residents and front-line caregivers suffer and die from poor quality care and lack of accountability, while state and federal governments line the pockets of the nursing home industry, and those empowered to change the law campaign for the votes of older adults pledging to improve their lives!
The author is a former member of the Legislature and served as Senate Chair of the Committee on Health Care Financing. Although he is a co-founder of Dignity Alliance, Inc, the views expressed in this article are not necessarily those of the coalition or its participants.
Issue #100 – August 1, 2022
Spotlight – we asked our readers three questions about the notion of dignity and their involvement with Dignity Alliance
What does “dignity” mean to me?
Jerry Halberstadt, Stop Bullying Coalition:
Treating all humans with respect and decency
Dignity is the ability to make your own choices and determine the course of your own life. Achieving dignity requires having the necessary supports to make those choices real.
Colin Killick, Disability Policy Consortium:
Dignity is the ability to make your own choices and determine the course of your own life. Achieving dignity requires having the necessary supports to make those choices real.
Why the advocacy promoted by Dignity Alliance Massachusetts is important to transform long-term care in facilities and in the community.
Sandy Alissa Novack, MBA, MSW, LICSW, ACSW, CSW-G
My name is Sandy Alissa Novack, and I have been a contributor to Dignity Digest since the first issue. I grew up in a family of readers with relatives who regularly kept up-to-date with the news and liked sharing information. My mom used to draw me pictures and also clip interesting scenes from magazines or stories and put them in my Peanuts lunchbox along with my packed lunch as a child, and in college my parents would mail me all kinds of interesting articles they had read they either thought would be useful for me, make me chuckle, or be inspirational. I grew up liking to do the same thing for others; in Dignity Alliance’s case, sharing articles of importance on aging and disability, long-term care, and community living, and of course the pandemic. I draw on the practical, inspirational and the items that tug at the heart. One of my “finds” you may have already listened to, but I feel it has more depth the more I listen to it; it is country singer Brett Eldredge’s song called Raymond, about a man working in a long-term care facility where an elder with dementia mistakes him for her son, and he gladly takes it upon himself to fill in as lovingly as if he were her son. At the intersection of aging, disability, military service, family and caregiving, the song moves me every time I listen to it (https://tinyurl.com/RaymondByBrettEldridge).
By the way, everyone is invited to share articles, webinar registration information, and more for the weekly Dignity Digest. If something interests you, you can bet it may interest many of the hundreds of other readers of the Dignity Digest, so send it along to us to consider, as space allows, for publication to email@example.com.
Margaret Morganroth Gullette, Ph.D. The writer is the author of Ending Ageism, or How Not to Shoot Old People:
Since March 2020, I have been writing a book titled American Eldercide, about the tragic and unnecessary deaths in the nursing homes. The “Eldercide” came about because of the abandonment of the 1.4 million residents (as of 2019) living in the 15,400 facilities, a failure of the federal government under Trump but also of state governments that had never taken seriously their part of the responsibility to provide safety, health, and dignity to some of the most vulnerable older adults in the nation. All too many died, and they deserve a monument that signals our regret for the losses. Many survived: in 437 facilities, no one died in 2020. The 150,000+ could have been protected. Others of us in the general population will need to join the survivors or will want similar services that can be provided best in their local communities. No one could doubt in the COVID Era that reforms are needed. . The stories of malfeasance and ageist ableism I discovered and reveal in this book might well have led me to despair of reform. And then I watched in horror as a federal government under a new administration proposed a valuable and targeted package of reforms that then was stymied by people in Congress who also, again, did not care enough. And then I discovered Dignity Alliance MA, dedicated advocates from all walks of life, who collectively know more about conditions and causes and needed improvements than any group in the Commonwealth. They have been tireless and efficient in the two years of the operation. They have wisely and gently guided the legislators on Beacon Hill–some of them also concerned and knowledgeable–toward ameliorating the causes of suffering and improving life for those, most of them in later life, who find themselves in the “care” of bureaucracies. By the time the 100th issue of Dignity Digest is published, the Legislature may or may not have proved itself worthy of this sacred trust.
Jerry Halberstadt, Stop Bullying Coalition:
The Commonwealth fails to adequately fund the services and to oversee and hold caregivers accountable, and no one else is trying to do what DAM is doing. Terrible things happen to vulnerable people and I applaud the efforts of DAM to advocate for remedies.
Colin Killick, Disability Policy Consortium:
Nursing homes as traditionally constituted deprive people of both dignity and safety based on disability and age. They are the largest remaining vestige of the system of institutionalization that used to segregate people with disabilities away from the rest of society and deprive them of agency. DAM’s work represents major progress in moving away from that archaic model.
Judi Fonsh MSW
I had the pleasure of having members of Dignity Alliance support me ( a retired Director of Social Work at the facility)and several others who were very concerned, in trying to prevent the closure of Farren Care Center. Farren, a non profit nursing home where the specialty care was for those who suffered from a persistent mental illness as well as medical illness and ADL needs or neurological issues and were rejected by at least 5 other nursing homes due to their care needs. The mission of caring was truly the focus at Farren. Many Alliance members met weekly and sometimes twice a week as we worked to at least prevent tragedies from occurring during the transfer. The plan that unfortunately came to fruition was that a for profit nursing home company took over the care and in the process many things changed and sadly the transition led to many residents dying. I was so impressed with the knowledge and skills the members of Dignity brought to the work!!
Jim Wessler, Alzheimer’s Association, Massachusetts/New Hampshire Chapter
I wanted to thank you and the Dignity Alliance for your support of the successful budget amendment that provided initial funding for expansion of our Dementia Care Coordination (DCC) program. This will enable us to expand access to this successful program that links family caregivers to immediate support, via their health care providers. You have been an important partner and we do appreciate it.
This is my vision for the future of services, support, and care for older adults and persons with disabilities.
Sandy Alissa Novack, MBA, MSW, LICSW, ACSW, CSW-G
This is part of my vision for the future of services, support and care for older adults and people with disabilities:
In many cases, it will begin when a person needs hospital care for an acute situation. Instead of the too-automatic thought that a person needs to be discharged to a short-term rehabilitation unit or even immediately discharged from the hospital to a long-term care facility, discharge planners will first try to discharge patients back to their house, apartment, or other community-based setting. This includes the chronically homeless or acutely homeless; they may not have a home to return to, but hospitals will learn to work with community agencies to get these folks housed when they are discharged, too, so they don’t unnecessarily get discharged to long-term care.
Because many may need supportive services to be discharged home, I envision a more robust homecare and home health care network in Massachusetts, where many more types of care are funded to provide companionship if needed to settle back into one’s routine at home post-surgery, post-pneumonia, post-anything, and one’s own doctors come to check on you because our new, lifelong, guaranteed health insurance for every citizen in the country sees the value in the home visits, like doctors used to do decades ago, to continue those relationships with providers who know you best. Respite care will be more generous in coverage, so that family caregivers do not risk losing their own careers, income, and health, trying to take care of their loved one morning, noon and night.
Solo agers will be able to have their chosen family of friends get paid for providing them with needed help, and solo agers will not be left to age all alone nor be socially isolated. Indeed, ample houses will be available for chosen families to even live in a single-family home with the solo ager, to provide the loving family environment that allows the best in everyone to shine, and so most people with disabilities will not need to move, all alone, into a facility.
Houses for the future, for anyone, will come with ramps into the house if it is an older building, or new construction regulations will require flat entrances, so no one need move out of a house into a facility due to decrease in mobility or other health issues. Older houses and apartment buildings will be required to add in elevators if they don’t already have elevators that allow residents with the larger and heavier assistive devices to get in and out of them with ease. Bathrooms and kitchens will be universally designed as well, throughout the state and at all price points, to account for the fact that we all need support at some points in our lives, whether we break a leg on a ski slope and have a temporary disability, or we have a permanent disability but want to keep cooking our favorite dishes or just enter to smell the food others are cooking in the kitchen.
Those citizens who, due to lung, or other health care issues, would do well to live by the ocean/waterways to be away from pollution, allergens, smoke and the like, will be given first priority for housing near the ocean/waterways, housing that will cost the same for them near the ocean as it would any place else in the state.
No smoking, including tobacco, cigarettes, pipes, vaping, or otherwise will be allowed in housing arrangements of any kind, or within two miles of any housing or facilities, to protect the health of everyone, child, or adult, including the smoker, but especially children, elders, and people with disabilities.
There will be no haggling with insurance that your wheelchair needs repair or replacement. If your doctor orders you need a repair or replacement, insurance must pay for what you need. Same thing for walkers, scooters, and other medical supplies. Similarly, if you need a medicine, you will be able to have the medicine ordered by your doctor, and the pharmacy gets re-imbursed by a state-level pharmacy bureau–no more studying each and every year which Part D Medicare prescription program you should sign up for.
Because one’s hearing, eyesight, and teeth are essential to one’s health, my envisioned guaranteed lifelong health care coverage for every citizen will cover these too long neglected aspects of our health.
Long-term care insurance will no longer be only for those who can pay the hefty yearly premiums. Long-term care coverage will be part of your guaranteed pre-pregnancy to grave health coverage, for every human being to be treated equitably and with dignity, at every stage of life, and with no family going into financial debt due to medical debt. Long-term care insurance will be used in the community as well as in long-term care facilities if you cannot remain living in the community.
Starting someday soon, personal care assistants and certified nursing assistants should be paid double the yearly salary they make now, so they will not have to hold down multiple jobs to feed, house, and otherwise support themselves and family. They will get full benefits, such as sick days and vacation time. The money that will fund these essential workers (as they were certainly shown to be essential during the pandemic) is based on the reality that caregivers who make a difference for the lives they care for should get paid for that life-giving, quality of life they make possible, and could come from a similar reality check in the sports, casino, and liquor arenas, where, for example, people who do not contribute essential services as defined in the pandemic and do not contribute to anyone’s life other than recreationally, have gotten paid more than essential workers. I think the pandemic has shown us where essential workers are and they are not in baseball games. We should use our experience during the pandemic to re-calibrate the salaries of all kinds of jobs, making sure that those who lead the way in the care of loved ones get paid well and what they are worth, which should be way more than what someone, admittedly an athlete, but still someone who does not perform essential services, earns.
At the end of life, no birth family nor chosen family needs to be shamed that they have no funds to bury a loved one. For the dignity of everyone, there will be no more paupers’ graves, unless perhaps due to war or other disasters the identity of bodies is not possible. Otherwise, as part of the pre-pregnancy to grave health care coverage and prioritizing human dignity, everyone is entitled to a basic funeral service, a basic casket fitting your religious or secular beliefs, and a marker or gravestone. As the news kept showing us at the beginning of the pandemic, morgues were overflowing with the deceased, and many countries were digging mass graves. From such moments, our sense of what is dignity only grows, and we must keep honoring our loved ones and giving them the dignity they deserve, every chance we can at every stage of life, and that includes the end of life.
Jerry Halberstadt, Stop Bullying Coalition:
We will enable everyone to live in peace, security, and safety and to their full potential.
I would like to add:
Jerry Halberstadt, Stop Bullying Coalition:
I have great respect for all who participate in the work of DAM. While the current mission of DAM is focused on institutional settings and moving people into the community and/or keeping them in the community, many of the same issues apply to elderly and disabled persons living in public and subsidized housing, and even to market rate and condominium apartments. There are huge gaps in our legal and administrative systems so that oversight and access to justice are not available. So, either DAM expands our scope, or a new organization needs to be created. Getting relief through legislation is not easy, we have tried for a decade.
Issue #99 – July 25, 2022
Spotlight (Digest 99)
The Shape of Care – a Podcast about Caregiving
The Shape of Care is a podcast series about caregiving created and hosted by Boston-based sociologist Mindy Fried, MSW, PhD.
The second series, consisting of four episodes, has just been released.
- Episode 1: “From fear to love: An evangelical Christian and a Muslim home care worker”
- Episode 2: “Making a difference: From care work to home care activism”
- Episode 3: “Nursing assistants: the heart and soul of nursing care”
- Episode 4: “She called me her three c’s: compassion, caring and comfort”
The Shape of Care podcast aims to link personal stories to broader sociological and policy issues including:
- The nature of relationships between care workers and the people they care for, whether in a home or in an institution;
- The quality of care – or lack thereof – in nursing homes;
- Current financing of our long-term care system (via Medicaid);
- The low wage, gendered and racialized care workforce;
- The lack of comprehensive long term care policies in the U.S.; and
- The type of care we want for our loved ones as they decline.
Access the series via the Apple Shape of Care link or www.theshapeofcare.org.
Also see the discussion guide for The Shape of Care podcast.
“The Shape of Care” illuminates the costs, financial and otherwise, of hiring (caregivers), the toll on the caregivers, and the need for a rethinking of a widening hole in the infrastructure of American health care. – Phoebe Lett, The New York Times.
An Act relative to supported decision-making agreements for certain adults with disabilities (S.2848, H.4725)
Dignity Alliance Massachusetts has endorsed An Act relative to supported decision-making agreements for certain adults with disabilities (S.2848, H.4725)
Momentum has been building around this proposed legislation. There are many disability advocacy and legal services organizations promoting this bill. There is a real opportunity to get passage before the end of the session on July 31.
What needs to be done:
Contact your state senator and state representative. Ask them to contact the respective Chairs of the Senate or House Ways and Means Committee and ask that the Supported Decision-Making Bill (S.2848/H.4725) movedfor action.
The link to find legislators and their contact information: https://malegislature.gov/search/findmylegislator
Even if you have previously made contact regarding this bill, reinforce it with another call or email.
There are hundreds of bills waiting for further action before the end of this session. Only a handful will be enacted. Please help make Supported Decision Making one of them.
Issue #98 – July 18, 2022
Spotlight (Digest 98)
Tax relief and economic development bill
The Senate is expected to release its tax relief and economic development bill on Monday July 18 for quick action this week. Sen. Comerford, lead sponsor with Rep Barber of a bill to reform MassHealth estate recovery, is expected to introduce an amendment to limit MassHealth estate recovery –the estate tax on the poor. More information to follow as it becomes available.
Issue #97 – July 11, 2022
Spotlight (Digest 97)
Help pass S.2848 / H.4725 into law! Contact Senate President Karen Spilka [(617) 722-1500 / Karen.Spilka@masenate.gov] and House Speaker Ronald Mariano [(617) 722-2500 / Ronald.Mariano@mahouse.gov]. Urge them to enact the legislation this session.
Issue #96 – Week of July 1, 2022
Spotlight (Digest 96)
Dignity Alliance Massachusetts has endorsed An Act expanding wheelchair warranty protections for consumers with disabilities (S.2567).
Help pass S.2567 into law! Read more about the S.2567, and how you can help.
A proposed state law would make it easier to get a broken wheelchair fixed.
Issue #95 – Week of June 24, 2022
Issue #94 – Week of June 17, 2022
Issue #93 – Week of June 10, 2022
The Network for Public Health Law, April 2022
The social determinants of health are the social, economic, and environmental conditions that impact the health outcomes of individuals at all stages of life. These systems include conditions like access to nutritious food, economic stability, safe neighborhoods, stable housing, social connection, and transportation. Inequitable access to these conditions can lead to disparities in health and higher rates of morbidity and mortality. These inequities — and the systems and structures that maintain them — affect lifelong health outcomes and influence how people age.
This report uses a revised Social Determinants of Health (SDOH) framework put forward by Ruqaiijah Yearby to examine the role of law as a tool to address structural discrimination, with a focus on health impacts across the lifespan. This framework illustrates how law and the systems it interacts with can shape health and well-being and identifies structural discrimination as the root cause of disparities in health outcomes.
This analysis illustrates a current opportunity to recognize the effects of racism throughout a person’s life and across generations and embed healthy aging in efforts to promote racial equity. Declarations of racism as a public health crisis, along with recommendations from health equity task forces and equity-focused legislation, can be tools to address the social determinants of health, improve health outcomes, and reduce the longevity gap. Multi-sector partners can, and should, join together to establish common priorities and create a collective infrastructure to identify and implement policy recommendations that will advance health and racial equity across the lifespan. Any process should identify specific community engagement strategies to support age-friendly communities and policies that uplift community voices and expertise.
The success of efforts to create an age-friendly public health system depends on renewed investment in public health infrastructure.32 However, it also depends on innovative investment in communities and strategic use of budgets as a policy tool. Countless partners from across sectors, communities, and identities have been involved in crafting, issuing, approving, and implementing declarations, health equity task force recommendations, and legislative requirements. Major funding commitments have been made by hospitals, health systems, insurers, professional associations, and corporate partners to advance racial equity. Collective action and strong cross-sector partnerships to leverage funding in pursuit of common objectives can mean greater impact on the health and well-being of people throughout their lives and across generations. Ultimately, health equity across the lifespan must be the framework and not just a goal.
Berry Dunn, May 11, 2022
With over 1,000 agency site participants, the National Healthcare at Home Best Practices and Future Insights Study’s goal is to provide agency leaders with clinical, financial, and operational best practices performed by leading organizations across the country.
The report covers:
- Operational, clinical, and financial processes
- Staffing, recruitment, and retention
- Palliative care
Issue #92 – Week of June 3, 2022
This report is the Council’s second annual report. The Commonwealth has 130,000 residents diagnosed with dementia3, supported by over 340,000 family caregivers and an estimated 130,000 or more residents currently living with dementia without a formal diagnosis. The state plan includes
recommendations and implementation plans around seven focus areas or “workstreams”:
- Caregiver Support and Public Awareness
- Diagnosis and Services Navigation
- Equitable Access and Care
- Physical Infrastructure
- Public Health Infrastructure
- Quality of Care
- Work / Retirement
- Housing & Independent Living
- Social Connectiveness
Issue #91 – Week of May 27, 2022
(Report) Broken Promises: An Assessment of Nursing Home Oversight
Long Term Care Community Coalition
This report,“Broken Promises: An Assessment of Nursing Home Oversight,” presents the results of an analysis of survey and enforcement data at the state, regional, and federal levels with a focus on all U.S. states and the 10 Regional Offices of the federal Centers for Medicare and Medicaid Services (CMS) tasked with overseeing the performance of the state enforcement agencies in their respective regions of the country.
Issue #90 – Week of May 20, 2022
Issue #89 – Week of May 13, 2022
Issue #88 – Week of May 6, 2022
Report on the Holyoke Soldiers’ Home, May 2016 to February 2020
Office of the Inspector General for Massachusetts, April 29, 2022
The Office’s report on its investigation, Holyoke Soldiers’ Home, May 2016 to February 2020, details the Office’s findings and outlines a comprehensive blueprint for lasting improvements. As more fully described in its report, the Office found:
- The governor, secretary of the Executive Office of Health and Human Services (EHS) and the Home’s Board of Trustees (Board) did not follow the statute that gives the Board the power to appoint the superintendent. Rather, the Board recommended three candidates, the EHS secretary met only with Mr. Walsh and the governor appointed him as the Home’s superintendent.
- Superintendent Walsh did not have and did not develop the leadership capacity or temperament for the role of superintendent. He created an unprofessional and negative work environment, retaliated against employees he deemed disloyal, demonstrated a lack of engagement in the Home’s operations and circumvented his chain of command.
- EHS and Department of Veterans’ Services (DVS) officials failed to adequately address serious complaints by senior managers and others at the Home. Administration officials, primarily at EHS, failed to recognize that the recurring complaints indicated that Superintendent Walsh did not have the leadership skills or temperament to lead the Home.
- EHS undertook two investigations of Superintendent Walsh’s actions during his four-year tenure, but those investigations were flawed, unnecessarily restricted in scope and biased in Superintendent Walsh’s favor.
In the report, the Office makes recommendations to fix longstanding structural problems, address fundamental flaws related to oversight, and strengthen management and accountability. The legislative recommendations include:
- DVS, which is currently within EHS, should be elevated to a cabinet-level secretariat. One person must be responsible for the oversight and management of the superintendent; one person must have the authority and responsibility to appoint, supervise, discipline, and remove the superintendent. The DVS Secretary should have this authority and responsibility for the superintendents at the Soldiers’ Homes in Holyoke and Chelsea (together the Soldiers’ Homes).
- Superintendents of the Soldiers’ Homes must meet certain requirements, including being licensed nursing home administrators with extensive management experience.
- The Department of Public Health (DPH) should have the authority and funding to provide independent clinical oversight and support for the Soldiers’ Homes.
- DVS should establish an ombudsperson and a hotline to allow confidential reporting by residents, relatives, staff and concerned citizens.
For a copy of the full report, see: Holyoke Soldiers’ Home, May 2016 to February 2020
Issue #87 – Week of April 29, 2022
Download the Dignity Digest 87:
AP Polls, April 27, 2022
Older adults by and large feel prepared to age in their current communities and are confident in the availability of and access to services in their community that will support their ability to age at home. But while still holding a generally positive outlook, some segments of this population—especially those with lower incomes, those living in rural areas, and Black or Hispanic older adults—have more reservations about the services in their area that support aging.
A new study of adults age 50 and older from the AP-NORC Center for Public Affairs Research and The SCAN Foundation finds that a majority of these adults feel prepared to stay in their homes and communities as long as possible, and they feel ready to reach out for help from a loved one or health care provider as they need it. Two-thirds think their area meets their needs for services like health care, grocery stores, and social opportunities. Few report having a hard time accessing needed services because of communication obstacles like a language barrier (11%), cultural barrier (8%) or age gap (8%); issues with affordability (15%); or issues of respect for their religious (4%) or cultural (3%) background. Health care services of all types are widely perceived as easy to access in their local area, and most feel health care providers in their area understand their needs (79%) and take their concerns seriously (79%).
AP Polls on Long Term Care
Sixty-two percent of adults age 50 and older have used telehealth since the beginning of the pandemic, but socioeconomic differences emerge in the reasons for using—and not using—it.
With COVID-19 case counts remaining high in much of the United States, 34% of adults age 50 and older feel socially isolated. And 1 in 4 feels that their social life and relationships have gotten worse over the past year.
More people think their local area is doing a good job than a poor job meeting the needs of older adults, but people of color and lower-income households are more concerned that their community isn’t equipped to provide the services needed for people to age at home.
Americans want to age in a home setting and support a range of policies to help them do so.
People providing care to an aging family member or friend have been acutely impacted by the COVID-19 outbreak, yet the pandemic has not led to any heightened awareness when it comes to preparations for growing older or caregiving.
The AP-NORC Center’s 2018 survey of long-term caregivers asks Americans about the types of challenges and costs they face providing care.
Issue #86 – Week of April 22, 2022
Download the Dignity Digest 86:
(Report) How Discrimination in Health Care Affects Older Americans, and What Health Systems and Providers Can D
The Commonwealth Fund
April 21, 2022
In this damning new report, 1 in 4 older Americans of color say health care providers treated them unfairly because of their race or ethnicity, a far higher proportion than people in 10 other high-income countries. Discrimination can include dismissing a patient’s symptoms or concerns, offering different treatment depending on insurance type, or not providing care in a patient’s preferred language. The Commonwealth Fund survey of adults over 60 found that among Americans who experienced discrimination, more than a quarter said their care suffered because of it. Almost half of this group said they were in fair or poor health, twice the level of those who did not report discrimination. Three-quarters have three or more chronic conditions and they are far more likely to feel socially isolated, have a mental health diagnosis, or face economic problems.
- Older adults in the United States are more likely to report racial and ethnic discrimination in the health system exists, compared with their peers in 10 other high-income countries.
- In the U.S., one in four Black and Latinx/Hispanic adults age 60 and older reported that they have been treated unfairly or have felt that their health concerns were not taken seriously by health professionals because of their racial or ethnic background.
- More than a quarter of U.S. older adults said they did not get the care or treatment they felt they needed because of discrimination.
- U.S. older adults who have experienced discrimination in a health care setting were more likely to have worse health status, face economic hardships, and be more dissatisfied with their care than those who did not experience discrimination.
- Promote transparency and accountability by identifying instances of discrimination and publicly reporting discrimination data.
- Develop medical school curricula to educate students about how the U.S. health care system has harmed patients of color and other historically marginalized communities.
- Examine how current policies enable discrimination and then remove or reform those policies.
- Address the lack of diversity in the U.S. health care workforce.
- Provide culturally and contextually appropriate care that addresses patients’ communication needs and preferences.
Issue #85 – Week of April 15, 2022
Download the Dignity Digest 85:
Inequities in COVID-19 vaccine and booster coverage across Massachusetts ZIP codes: large gaps persist after the 2021/22 Omicron wave
medRxiv, April 7, 2022
Background. Inequities in COVID-19 vaccine coverage may contribute to future disparities in morbidity and mortality between Massachusetts (MA) communities.
Methods. We obtained public-use data on residents vaccinated and boosted by ZIP code (and by age group: 5-19, 20-39, 40-64, 65+) from MA Department of Public Health. We constructed population denominators for postal ZIP codes by aggregating Census-tract population estimates from the 2015-2019 American Community Survey. We excluded non-residential ZIP codes and the smallest ZIP codes containing 1% of the state’s population. We mapped variation in ZIP-code level primary series vaccine and booster coverage and used regression models to evaluate the association of these measures with ZIP-code-level socioeconomic and demographic characteristics. Because age is strongly associated with COVID-19 severity and vaccine access/uptake, we assessed whether observed socioeconomic and racial inequities persisted after adjusting for age composition and plotted age-specific vaccine and booster coverage by deciles of ZIP-code characteristics.
Results. We analyzed data on 418 ZIP codes. We observed wide geographic variation in primary series vaccination and booster rates, with marked inequities by ZIP-code-level education, median household income, essential worker share, and racial-ethnic composition. In age-stratified analyses, primary series vaccine coverage was very high among the elderly. However, we found large inequities in vaccination rates among younger adults and children, and very large inequities in booster rates for all age groups. In multivariable regression models, each 10 percentage point increase in “percent college educated” was associated with a 5.0 percentage point increase in primary series vaccine coverage and a 4.9 percentage point increase in booster coverage. Although ZIP codes with higher “percent Black/Latino/Indigenous” and higher “percent essential workers” had lower vaccine coverage, these associations became strongly positive after adjusting for age and education, consistent with high demand for vaccines among Black/Latino/Indigenous and essential worker populations.
Conclusion. One year into MA’s vaccine rollout, large disparities in COVID-19 primary series vaccine and booster coverage persist across MA ZIP codes.
Issue #84 – Week of April 8, 2022
Download the Dignity Digest 84:
National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff
A major, comprehensive report on nursing home care was released on April 6, 2022, by the Committee on the Quality of Care in Nursing Homes under the jurisdiction of the National Academies of Sciences (NASEM), Engineering, and Medicine, The National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff.
With support from a coalition of sponsors, NASEM formed the Committee on the Quality of Care in Nursing Homes to examine how the United States delivers, finances, regulates, and measures the quality of nursing home care. The resulting report, National Imperative to Improve Nursing Home Quality: Honoring Our Commitment to Residents, Families, and Staff, identifies seven broad goals (below) and supporting recommendations which provide the overarching framework for a comprehensive approach to improving the quality of care in nursing homes. The new Committee on the Quality of Care in Nursing Homes examined how our nation delivers, regulates, finances and measures quality of nursing home care, including the long-standing challenges brought to light by the COVID-19 pandemic.
Highlights and Recommendations: The Quality of Care in Nursing Homes. In this link, scroll down to Publications. You’ll see to the right, links to Highlights and Recommendations
National Imperative Presentation slides
- The way in which the United States finances, delivers, and regulates care in nursing home settings is ineffective, inefficient, fragmented, and unsustainable.
- Immediate action to initiate fundamental change is necessary.
- Stakeholders need to make clear a shared commitment to the care of nursing home residents.
- Ensure that quality improvement initiatives are implemented using strategies that do not exacerbate disparities in resource allocation, quality of care, or resident outcomes.
- High-quality research is needed to advance the quality of care in nursing homes.
- The nursing home sector has suffered for many decades from both under-investment in ensuring the quality of care and a lack of accountability for how resources are allocated.
- All relevant federal agencies need to be granted the authority and resources from the U.S. Congress to implement the recommendations of this report.
- Goal one: Deliver comprehensive, person-centered, equitable care that ensures the health, quality of life, and safety of nursing home residents; Promotes resident autonomy; And manages risks
- Goal two: Ensure a well-prepared, empowered, and approximately compensated workforce
- Goal three: Increase transparency and accountability of finances, operations and ownership
- Goal four: Create a more rational and robust financing system
- Goal five: Design a more effective and responsive system of quality assurance.
- Goal six: Expand and enhance quality measurement and continuous quality improvement
- Goal seven: Adopt health information technology in all nursing homes
April 6, 2022
About 1.3 million Americans live in the country’s 15,000 nursing homes, where they are cared for by roughly 3 million staff members. As we write this, nearly 170,000 nursing home residents are estimated to have died from Covid-19. Many, many more were isolated from family and friends during the 20-month lockdown. Bed sores, severe weight loss, depression, and mental and functional decline have spiked among nursing home residents. And nurses, certified nurse aides, and others who work in these facilities, putting their own lives at risk, have worked in the most challenging of conditions without adequate pay or support. . .
President Biden recommended several reforms for nursing homes during his State of the Union address. These included minimum staffing standards, increased oversight, and better financial transparency. Although these provide a start, much more comprehensive and system-level action is necessary to transform this care in the United States. . .
Over the past 18 months, we served on a 17-member committee assembled by the National Academies of Sciences, Engineering, and Medicine that was charged with making bold, actionable recommendations to improve nursing home care.
The committee’s report, which was released Wednesday, concluded that the way the U.S. finances, delivers, and regulates care in nursing home settings is ineffective, inefficient, inequitable, fragmented, and unsustainable.
McKnight’s Long-Term Care News
April 6, 2022
A long-awaited national report has found that the way the United States finances, delivers and regulates nursing home care is ineffective and unstable. Immediate action is needed to bring meaningful changes to the system to better meet the needs of residents and staff, the vast team of researchers added. . .
What’s promising about the report is how comprehensive and detailed it is in laying out the actions needed and by whom, said Terry Fulmer, Ph.D., president of the John A. Hartford Foundation, one of the study’s sponsors.
Fulmer said legislators on both sides of the aisle, regulators, state policymakers and nursing home operators should all back this report and its actionable recommendations.
“The recommendations are an interrelated and complete set that gives us the blueprint for transformative change that is desperately needed for our nursing home staff and residents.
National Council on Disability (NCD)
October 29, 2021
- Residents of congregate care facilities such as nursing homes, assisted living homes, psychiatric facilities, and board and care homes, where bedrooms, direct care workers, and amenities are shared, and infection control is highly challenging, caught the virus a died in large numbers, largely due to lack of personal protective equipment (PPE), close contact with others in confined settings, and the higher susceptibility to the virus due to other health conditions. The institutional model was once again shown to be detrimental to vulnerable individuals.
- People with disabilities of varying ages relied on direct care workers to aid with daily activities needed to remain functional in their communities, and neither they nor their workers could fully shelter in place or obtain needed personal protective equipment (PPE).
- The growing shortage of direct care workers that existed prior to the pandemic got worse during the pandemic, Many such workers, who are women of color earning less than a living wage and lacking health benefits, left their positions for fear of catching or spreading the virus, leaving people with disabilities and their caregivers without aid, and placing people with disabilities at risk of losing their independence or being institutionalized.
- Researchers have increasingly documented how physicians and other healthcare providers hold implicit biases concerning disability that lead to a primary focus on the functional limitations of people with significant disabilities and an assumption that they have a low quality of life as a result. Those assumptions have guided treatment decisions, with deadly consequences. People with intellectual and developmental disabilities, and those who were medically fragile and technology dependent, disabilities faced a uniquely high and explicit risk of being triaged out of COVID-19 treatment when hospital beds, supplies, and personnel were scarce, denied the use of their personal ventilator devices after admission to a hospital, and at times, denied the assistance of critical support persons during hospital stays. Informal and formal Crisis Standards of Care (CSC), documents that guided the provision of scare healthcare in surge situations, targeted people with certain disabilities for denial of care.
- People with disabilities and chronic conditions who were at particularly high risk of infection with, or severe consequences rom, COVID-19 were not recognized as a priority population by many states when vaccines were given emergency use authorization and had to advocate from a position of weakness because of a longstanding failure to collect detailed functional disability data in healthcare. Physical, online, communication, and procedural barriers remained common in multiple key activities that were commonly needed during the pandemic, such as the administration of testing for COVID-19 and,later on, vaccination.
- Students with disabilities did not receive needed in-person special education services and supports that made learning possible and were given last or no priority when districts attempted to preserve educational opportunity. Some students with special education needs, who were under the jurisdiction of the Bureau of Indian Education, experienced an especially challenging combination of internet barriers on Indian and rural lands.
- People with disabilities have historically been underrepresented in the workforce even in robust economic times and the pandemic exacerbated this long-standing problem.
- Employed people with disabilities and the family members of people with disabilities encountered the difficult choice between the income needed from work and the social distance and isolation needed to keep people with high-risk disabilities safe from the coronavirus, especially in the face of gaps in disability employment protections such as the absence of the ability to seek leave as a care provider for a family member with disabilities.
- Deaf, Hard of Hearing, Deaf-Blind, and Blind persons experienced a profound communication gulf as masks became commonplace, making lipreading impossible and sign language harder, while the virus made touch dangerous for blind persons and people with visual impairments who typically experience the world through touch.
- The financial, social, and familial adjustments that had to be made over the course of the pandemic, in addition to the constant threat of contracting COVID-19 itself, had a negative impact on everyone’s mental health, and mental health symptoms were experienced by some who acquired the virus. But both youth and adults who had mental health disabilities that predated the beginning of the pandemic experienced measurable deterioration over its course, made worse by a preexisting shortage of community treatment options, effective peer support, and suicide prevention support.
Issue #83 – Week of April 1, 2022
Download the Dignity Digest 83:
(Essay) Unexpectedly united: The parallel plights of two communities 2,000 miles apart wracked by the pandemic
March 28, 2022
By Tom Sequist who is the chief medical officer of Massachusetts General Brigham in Boston; medical director of the Outreach Program with the Indian Health Service and a physician at the Phyllis Jen Center for Primary Care, both at Brigham and Women’s Hospital; and a professor of medicine and health care policy at Harvard Medical School.
I constantly straddle two disparate worlds. One is in Boston, where I work for one of the country’s best health care systems and serve as a professor at Harvard Medical School. The other is in northern New Mexico, where I am a member of the Taos Pueblo tribe.
While these two communities could not be more different in population, culture, or geography, the Covid-19 pandemic has linked them in an unfortunate but all-too-common way: both are beset by racism and racial disparities in health care.
The Boston area was an early hotbed of the pandemic in the United States. In March 2020, Chelsea, Mass., a predominantly Latinx city that borders Boston to the north, had one of the highest Covid-19 rates in the country, with 2,475 cases reported among its 40,000 residents. These soaring rates soon hit surrounding areas, also with largely Black and Latinx populations.
For all its health care prowess, Boston — like the rest of the world — was not prepared for a pandemic. Clinical protocols and policies took time to put in place, guidelines were constantly shifting as public health officials and clinicians continued to learn on the fly about this new disease, and the global supply chain was in shambles, limiting access to personal protective equipment and Covid-19 testing supplies. A dearth of Spanish-speaking staff also limited hospitals’ ability to provide care for the huge volume of patients from Latinx communities. . .
As hospitals became overcrowded, equity meant reevaluating the algorithms used to determine who was allocated a bed or a ventilator. As we set up testing sites, a focus on equity drove us to open locations not just where our organization had an existing physical footprint in a neighborhood but where case rates were highest and transportation was limited. When vaccines became available, equity necessitated that we look beyond online appointment scheduling and directly call individuals to make sure that a lack of internet access or digital literacy didn’t lead to their not getting this lifesaving therapy. When we communicated anything related to the Covid-19 pandemic to patients and community members, equity required us to put out communications in multiple languages and using channels beyond email — including messaging via community vans, text messaging, social media, and other outlets. . .
The pain and suffering of Covid-19 and the events in the first half of 2020 that sparked social justice protests across the nation have opened the door to drive tremendous change in health care equity. The U.S. is at a historic moment of racial reckoning. Racism and inequities and their impacts are being laid bare and nearly every industry — including health care — has recognized its role in changing the country’s trajectory. . .
Movements like this traditionally take years to be brought to life. But the pandemic has shown that much-needed change can come swiftly when people and organizations collectively channel their energy into addressing society’s challenges.
Black Coalition Against COVID
This report is a call to action to address the continued COVID-19 burden and highlight the need for continued vigilance to ensure equity for Black Americans. Our reflection over the course of the COVID-19 pandemic revealed a myriad of challenges and disparities across several indicators of well-being. This was unsurprising since Black Americans experienced disproportionate disease burden prior to the pandemic, a result of longstanding social and structural inequities. The trajectory of the COVID-19 burden among Black Americans showed overall declines; however, Black Americans continued to experience disparate burden from infection, hospitalization, death, and incidence of long-COVID compared to other racial and ethnic groups. Other pandemic related effects such as food and economic insecurity, loss of life, educational achievement gaps, behavioral health disorders, and increased need for mental health care services disproportionately affected Black Americans.
Policy and practice interventions have emerged over the course of the pandemic to alleviate suffering experienced by Black and other communities of color. This report highlights ten focus areas and twelve action steps to support equitable COVID-19 care and sustain recovery efforts for Black communities.
The work ahead will be more challenging than ever and requires well designed, adequately funded, and strategically coordinated efforts at the national, regional, state, and local levels. The time is now to recognize health equity is the work of everyone and for each one of us to do our part on the journey.
Issue #82 – Week of March 25, 2022
Download the Dignity Digest 82:
Issue #81 – Week of March 18, 2022
Download the Dignity Digest 81:
Institute for Women’s Policy Research, March 2022
A new national survey by IWPR finds solid pay, health insurance, job security, retirement benefits, and paid leave top the list of considerations for women as they re-enter the workforce following the pandemic.
TOPLINE SURVEY FINDINGS
- Good pay and health insurance are the top two desired benefits for women re-entering the workforce. When considering future jobs, a majority of women report a living wage (87.8 percent) and health insurance (86.0 percent) to be “very important” or “important” benefits, followed by retirement benefits (84.7
- percent) and job security (80.7 percent). Paid vacation (79.4 percent), paid sick time (77.3 percent), and paid family leave (76.6 percent) are also “very important” or “important” considerations.
- Women also want flexibility as they consider future jobs. Over six in ten women (61.4 percent) surveyed consider control of their schedules to be “very important” or “important.”
- Despite more than a year of the pandemic, paid sick and family leave remains an elusive benefit for many working women. Over one-third of women (37.5 percent) employed full-time report they do not have paid sick leave—and 65.2 percent of full-time workers surveyed report they do not have paid family leave.
- Close to 70 percent of women report they do not have job security. Of women surveyed, just 31.6 percent felt that their current job offered security.
The Pioneer Institute, March 8, 2022
Hubwonk host Joe Selvaggi talks with Brookings Institution Senior Fellow and healthcare policy expert Stuart Butler about the challenge of building long-term care systems and institutions that will support Americans as they age, without depleting assets and bankrupting the social safety net.
Issue #80 – Week of March 11, 2022
Download the Dignity Digest 80:
Legal Services Corporation (LSC)
The phrase “with liberty and justice for all” in the U.S. Pledge of Allegiance represents the idea that everyone should have access to justice, not just those who can afford legal representation. In criminal cases, legal assistance is a right. Americans accused of a crime are appointed legal counsel if they cannot afford it. As a general matter, however, there is no right to counsel in civil matters. As a result, many low-income Americans “go it alone” without legal representation in disputes where they risk losing their job, their livelihood, their home, or their children, or seek a restraining order against an abuser.
This “justice gap” – the difference between the civil legal needs of low-income Americans and the resources available to meet those needs – has stretched into a gulf.1 State courts across the country are overwhelmed with unrepresented litigants. In 2015, for example, an estimated 1.8 million people appeared in the New York State courts without a lawyer.2 And we know that 98% of tenants in eviction cases and 95% of parents in child support cases were unrepresented in these courts in 2013.3 Comparable numbers can be found in courts across the United States.
This study explores the extent of the justice gap in 2017, describing the volume of civil legal needs faced by low-income Americans, assessing the extent to which they seek and receive help, and measuring the size of the gap between their civil legal needs and the resources available to address these needs.
Kaiser Family Foundation, March 10, 2022
- 1 in 10 Adults Owe Medical Debt, With Millions Owing More Than $10,000.
- Black Adults, Those in Poor Health, and People Living with Disabilities are Most Likely to Carry Significant Medical Debt.
- Americans Likely Owe Hundreds of Billions of Dollars in Total Medical Debt.
- A new KFF analysis of government data estimates that nearly 1 in 10 adults (9%) – or roughly 23 million people – owe medical debt. This includes 11 million who owe more than $2,000 and 3 million people who owe more than $10,000.
- The analysis is based on data from the 2020 Survey of Income and Program Participation, a nationally representative survey that asks every adult in a household whether they owed money for medical bills in 2019 and how much they owe. It looks at people with medical debt of more than $250.
- The 2020 survey suggests Americans’ collective medical debt totaled at least $195 billion in 2019, though with quite a bit of uncertainty. A small share of adults account for a huge share of the total, with considerable variation from year to year. The estimate is significantly higher than other commonly cited estimates, which generally rely on data from credit reports that may not capture medical debts charged to credit cards or included in other debts rather than being directly owed to a provider.
- Other findings include:
- People ages 35-49 (11%) and 50-64 (12%) are more likely than other adults to report medical debt. They have greater health needs than younger people on average and aren’t yet old enough to qualify for Medicare coverage, which may protect them from high costs.
- Larger shares of people in poor health (21%) and living with a disability (15%) report medical debt. People in these groups are more likely to need and receive care than people in better health and without disabilities.
- Among racial and ethnic groups, a larger share of Black adults (16%) report having medical debt compared to White (9%), Hispanic (9%), and Asian American (4%) adults.
- Adults who were uninsured for more than half of the year are more likely to report medical debt (13%) than those who were insured for all or most of the year (9%).
- It’s not yet clear how the pandemic and resulting recession affected medical debt. Many people lost jobs and income early in the pandemic, which could have led to more difficulty affording medical care. At the same time, many people delayed or went without care, so fewer people may have been exposed to costly medical care. Shifts in insurance coverage and COVID-related cost-sharing waivers could also affect what people had to pay out-of-pocket.
Peterson-Kaiser Family Foundation, March 10, 2022
Health plans use cost-sharing (deductibles, copayments, and coinsurance) as incentives for enrollees to use services efficiently and to shop for lower cost options when they do need care. Cost-sharing that is too high, however, can discourage enrollees from getting the care that they need or drive them into financial distress and even bankruptcy. Enrollees in private health insurance plans may have to pay thousands of dollars to meet plan deductibles, coinsurance, and copayments. Cost-sharing in private health insurance plans has steadily increased over time. For employer-based coverage in 2021, the average deductibles for single coverage were $2,379 for covered workers at small firms and $1,397 for covered workers in larger firms. Similarly, deductibles in non-group Marketplace plans can be much higher for enrollees not eligible for cost-sharing reductions.
By shifting a portion of health cost onto people using services, health plan cost-sharing reduces the expense paid by the insurer, thereby potentially lowering the premium. More importantly, requiring consumers to contribute encourages them to carefully consider which services they will use, and, depending on how the cost-sharing is structured, may encourage the use of lower-cost care. While cost-sharing may reduce premiums, evidence suggests it also might discourage people from seeking needed and beneficial care.
As cost-sharing levels have increased, so has concern about cost-related access barriers among people with private coverage. While low-income people enrolled in Medicaid or the Marketplaces face little or no cost-sharing, employer plans generally do not vary cost-sharing based on income. In 2020, just 7% of firms with 50 or more workers had programs to help lower-wage workers meet cost-sharing obligations.
Much of the discussion around affordability of private coverage has centered on premium costs. A broader notion of affordability would focus on the ability of families, particularly low- and middle-income families, to meet potentially high out-of-pocket expenses associated with a chronic or acute illness. In addition to high cost sharing deterring needed health care, it can also create financial instability. In the U.S., nearly 1 in 10 adults owe medical debt.
Issue #79 – Week of March 4, 2022
Download the Dignity Digest 79:
New York Times (free access), February 27, 2022
We did have a lineage of disability in our family. Given that roughly one in four adults have a disability of some kind, all our families include disabled ancestors. Disability is part of every family story. But we have to know of our disabled kin to claim them. . .
We now can learn about our racial and ethnic heritage simply by spitting into a vial: millions of people have done so in order to take ownership of their identities. When it comes to disability, though, the tools of genetic testing are often used to eradicate and pathologize, not to map and connect. And they are inadequate to the task because the vast majority of disabilities are acquired over time: About 5 percent of children in the United States have a disability; among Americans 65 and older, that number leaps to about 40 percent. We need more than genetic evidence. We need narrative evidence as well. . .
Our disability lineages can only be reclaimed through the stories we uncover. This means conceiving of disability as an identity like being queer, rather than reducing it to a medical condition. . .
Finding disability lineage can mean learning to listen. To hear the untold story in euphemisms, silences, and gaps. To read between the family lines. It means looking at old photos and noting the variety of bodies and minds you see. . .
Reclaiming our disability lineage also means rethinking fundamentally what a disability is — its meaning and value. I had never thought of my Grandma Adina as disabled. I just knew that she adored me, dance in any form, and social justice, possibly in that order. Grandma Adina was also extremely hard of hearing. . .
A sense of belonging to a greater story is integral to all humans. Disability is a central part of that story — that mix of myth and fact which makes up our family lineages. In imagining a future in which I will certainly be disabled if I am lucky enough to live so long, I have my deaf grandmother to guide me. I have Rhona, in all her taffeta sass, to help me better understand and care for my daughter. And I have Cousin XY. In my dreams, he plays with my daughter in my grandfather’s house. He has her eyes.
*New York Times, February 21, 2022
Jane Brody: “Before I go, I want to highlight the breathtaking evolution in health advice that has occurred since I joined The Times in 1965.” Jane Brody reflects on 48 years as the Personal Health columnist
(Interview) Worker shortage hitting nursing homes hard
Boston 25 News, March 2, 2022
Job losses leading to family worries about care.
Interview with Dignity Alliance Massachusetts member, Doris Bardwell.
Peterson Center on Healthcare – Kaiser Family Foundation, December 10, 2022
The health sector saw a sharp drop in revenues and employment at the onset of COVID-19 in the spring of 2020. Health services utilization dropped precipitously as providers cancelled elective care and patients practicing social distancing avoided health facilities. Utilization of health services has remained somewhat lower than expected based on utilization levels in years before the pandemic and health sector employment remains below pre-pandemic levels.
- Unlike during past recessions, health employment fell drastically in early 2020
- Nursing homes and community care facilities show continued decreases in employment while other components have nearly recovered
- Health sector employment remains below expectations, particularly for home health services and community care centers for the elderly
- Job openings in the health sector, like the rest of the economy, are higher than pre-pandemic levels
- Job quits hit all-time highs in all sectors, including health & social assistance
- Unemployment rates among non-hospital health workers have increased for women and decreased for men
- Average weekly earnings have increased steadily among all employees, including health sector employees, since the beginning of the pandemic
- Home- and community-based care employees have seen higher average wage increases than employees who work in a clinical setting
Issue #78 – Week of February 25, 2022
Download the Dignity Digest 78:
(Essay) Lessons from Dr. Salk
Salem News, February 18, 2022
There are still millions of polio survivors in the United States and around the world. But I am not writing about us today. I am writing about the near eradication of polio, a virus that particularly struck infants and adolescents.
The polio virus was very contagious and was a crippling and a killing disease that attacked the central nervous system, sometimes causing paralysis, with the most serious cases requiring what was called the “iron lung” to breathe. This was a feared disease, with parents guarding their children, and making efforts to keep them from areas where they thought they might “catch it”. . .
I believe that the parents of the 1950s courageously brought their children to be vaccinated against the dreaded poliovirus. They knew they had to do it to protect them. I do not remember, nor ever heard of stories of any parents refusing to have their children vaccinated, and we, as children (yes, even those of us who had already had polio), dutifully lined up to be vaccinated. and still I remember clearly a boy who fainted right in front of me after having just received his shot. That gave me pause for a second or two, and then I stepped right up with a little hesitation and took my turn. . .
Vaccines are safe and effective. Researchers have worked on vaccines for a few hundred years.
Receiving the COVID-19 vaccine has nothing to do with your own personal right not to take the vaccine. There really should be no question about taking it. Taking the vaccine is about protecting you, your children, your parents, your friends, and neighbors. But it is more than that. Taking the vaccine is for the common good, for humanity. This really is a responsibility that we all share.
(Report) The Effectiveness of Government Masking Mandates On COVID-19 County-Level Case Incidence Across the United States, 2020
*Health Affairs, February 16, 2022
Evidence for the effectiveness of masking on SARS-CoV-2 transmission at the individual level has accumulated, but the additional benefit of community-level mandates is less certain. In this observational study of matched cohorts from 394 US counties between March 21 and October 20, 2020, we estimated the association between county-level public masking mandates and daily COVID-19 case incidence. On average, the daily case incidence per 100,000 people in masked counties compared with unmasked counties declined by 23 percent at four weeks, 33 percent at six weeks, and 16 percent across six weeks postintervention. The beneficial effect varied across regions of different population densities and political leanings. The most concentrated effects of masking mandates were seen in urban counties; the benefit of the mandates was potentially stronger within Republican-leaning counties. Although benefits were not equally distributed in all regions, masking mandates conferred benefit in reducing community case incidence during an early period of the COVID-19 pandemic.
Health Affairs Forefront, February 16, 2022
COVID-19 has opened the floodgates for health care at home options. Public health emergency waivers are fast-tracking telehealth and hospital at home—which provides hospital-level care in patients’ homes—while infection concerns have driven more patients to home health following a hospitalization. These services and models are part of a growing list of home-based medical care models that also includes in-home primary or palliative care, in-home dialysis, and paramedicine. Some are covered through traditional Medicare, and others are available only through Medicare Advantage plans. . . Before we can migrate more health care into the home, we need to take a hard look at our performance with the current Medicare home-based benefits: home health and hospice. . .
The Future of Health Care at Home
The Medicare home health and hospice benefits are not the same as primary care at home or hospital at home models. But as the latter two increasingly become included as plan benefits, and as we work to improve the former, policy makers should keep in mind that organizing and delivering services at home can create challenges for patients and their families. The home setting, more than any other, requires that we:
- Fund and value good coordination and accountability for service delivery;
- Equip patients and family members to perform medical tasks, according to their preferences and abilities; and
- Ensure that the varied services and supports are delivered in the appropriate amount, mix, and cadence to meet the needs of all patients.
As we move forward in designing new payment systems for health care at home, there must be an entity—such as a primary care organization, for example—with annualized accountability for delivering high-value care in the home, even if the care is delivered and financed episodically. And furthermore, these accountable entities must have some flexibility in determining the types, mix, and cadence of services. They must also be accountable for care coordination and integration across services and providers.
Health Affairs Forefront, February 14, 2022
An underrecognized medium for improving the quality of care for patients with disabilities is the electronic health record (EHR). . .
In February 2014, the Department of Health and Human Services (HHS) proposed a rule in “Electronic Health Record (EHR) Certification Criteria; Interoperability Updates and Regulatory Improvements” that required EHRs to include the capability to record disability status. Informed by Section 4302 of the Affordable Care Act, this report also proposed seven questions to be asked to patients surrounding disability and sought input on these. Later, a 2020 study that interviewed patients with disabilities about proposed changes in the health care system identified that almost all patients preferred for data about their disability to be in the EHR and available to all their care teams. In 2022, there remains significant variability in recording of disability and accommodations—while these data are largely absent in EHRs, they are sometimes buried in charts or documented in a limited way that care teams cannot easily reference.
EHRs should be required to contain structure to document a patient’s type of disability, history of disability, accommodations required in the health care setting, autonomy in activities of daily living (ADLs), and preferred language surrounding disability. All disability information that is documented should come from patients themselves—questions asked should be patient-centered and inclusive of the diversity of ways in which patients may identify. There should also be a capacity to document changes in these metrics over time. Standardized EHR structure, in addition to facilitating documentation, ensures that we consistently address and accommodate the full spectrum of disabilities that patients may have, including disabilities that are invisible.
After standardizing the incorporation of the disability status of patients into EHRs, it is critical for these additions to be communicated to all members of patient care teams. Changes in system capabilities will not meaningfully improve disability documentation if health care professionals, staff, and trainees are not educated on appropriately documenting information based on their clinical encounters. Federal policies that mandate the standardized completion of this information and tie completion to hospital incentives over time would also globally improve input of disability data in the EHR. This could take the form of including disability in meaningful use criteria for EHRs produced by the Office of the National Coordinator for Health Information Technology in HHS. . .
Ableism and the explicit prioritization of certain types of bodies and minds over others are roadblocks to progress in these sectors.
Amidst necessary and ongoing reform, all members of the health care team who interface with patients with disabilities have the shared experience of referencing their EHRs. Implementing standard documentation of disability in the EHR can thus centralize our efforts to better our care for patients with disabilities—it will prompt regular clinical conversations with all patients about their disabilities, help us recognize what accommodations patients may need and invest in these, and facilitate research that furthers our understanding of inequities experienced by patients with disabilities and how to address them.
(Report) America’s Rental Housing 2022
Joint Center for Housing Studies of Harvard University
Rental housing demand came roaring back in the second year of the pandemic, reducing vacancy rates and driving up rents. However, lower-income households that took the brunt of job losses still struggle to make rent, reinforcing the stark divide between higher- and lower-income households. The need for a permanent, fully funded housing safety net is more urgent than ever, and a key element of that support must be to protect existing rental housing from the threat of climate change.
Joint Center for Housing Studies of Harvard University, January 27, 2022
As has been well documented, the financial impact of the pandemic has disproportionally impacted renters, leading to high shares who have fallen behind on rent. Less well recognized are the many ways that renters tapped a range of financial resources to make rent even in the face of income lost due to the pandemic. To fill this gap in what is known about the financial impacts of the pandemic, this paper analyzes data from the Census Bureau’s Household Pulse Survey to identify the financial resources utilized by renters to meet their expenses after losing income. The results indicate that renters relied on numerous and varied financial resources, in many possible combinations, in response to a financial shock. Lower-income renters and renters of color, in particular, have relied on both a range of government supports as well as drawn from a broad spectrum of personal resources, including savings and credit. Lower-income renters and renters of color are also much more likely to rely on borrowing from family and friends to pay their expenses. The findings indicate that the financial impacts of the pandemic are deeper than estimates of rent arrears alone would suggest and extend beyond the households who lost income, given those households’ reliance on social networks to provide financial support.
Issue #77 – Week of February 18, 2022
Download the Dignity Digest 77:
*New York Times, February 15, 2022
by Frank Bruni
The paradox of my own situation — I was outwardly unchanged but roiling inside — made me newly alert to a fundamental truth: There’s almost always a discrepancy between how people appear to us and what they’re actually experiencing; between their public gloss and private mess; between their tally of accomplishments — measured in money, rankings, ratings, and awards — and a hidden, more consequential accounting. I’d long known that. We all do. But I’m not sure how keenly we register it, how steadily we remember it.
And that truth helped me reframe the silly question “Why me?” into the smarter “Why not me?” It was a guard against anger, an antidote to self-pity, so much of which hinges on the conviction, usually a delusion, that you’re grinding out your days while the people around you glide through theirs, that you’ve landed in the bramble to their clover. To feel sorry for yourself is to ignore that everyone is vulnerable to intense pain and that almost everyone has worked or is working through some version of it.
Transformation Tuesdays – Gray Panthers of New York City
- Margaret Gullette, Writer & Lecturer; Age Critic; Resident Scholar Women’s Studies Research Center, Brandeis University[Member: Dignity Alliance Massachusetts]
- Beth Finkel, State Director, AARP New York
- Lori Porter, Cofounder & CEO, National Association of Health Care Assistants
Issue #76 – Week of February 11, 2022
Download the Dignity Digest 76:
Kaiser Family Foundation, February 3, 2022
More than 200,000 long-term care facility (LTCF) residents and staff have died due to COVID since the start of the pandemic (Figure 1). The CDC’s latest update reporting data on nursing home deaths as of January 30th pushes the reported number of deaths over this bleak milestone. This finding comes at a time when the national surge in cases due to the Omicron variant has started to subside, deaths are rising nationwide, and nursing homes have been working to increase vaccination and booster rates among residents and staff, particularly in light of the new federal rule requiring staff vaccination recently allowed to take effect by the Supreme Court. As of January 16th, approximately 82% of nursing home staff and 87% of nursing home residents are fully vaccinated.
This death count is based on state and federal data sources. For the period between March 2020 and June 2021, the total number of deaths is based on state-reported data on LTCFs, including nursing homes, assisted living, and group homes, that summed to 187,000 resident and staff deaths. For the subsequent period between July 2021 and January 2022, we incorporated data reported to the federal government by nursing facilities (excluding other types of LTCFs), adding another 14,000 resident and staff deaths to the total. The total number of resident and staff deaths from these two sources, roughly 201,000, is likely an undercount of the true number of resident and staff deaths in LTCFs since it excludes deaths in long-term care settings other than nursing homes after June 30th, 2021. Additionally, not all states reported data on all types of LTCFs prior to June 2021.
COVID-19 deaths in LTCFs make up at least 23% of all COVID-19 deaths in the US (Figure 1). This share has decreased since the start of the pandemic, when LTCF deaths were nearly half of all deaths nationally. This share has dropped over time for a number of reasons, including high rates of vaccination among residents, rising vaccination rates among staff, an increased emphasis on infection control procedures, declining nursing home occupancy, and the lack of data on deaths in assisted living and LTCFs other than nursing homes in recent months. Despite this drop as a share of total deaths, nursing homes have continued to experience disproportionately high case and death rates in the country during the recent surge. Higher case rates may be attributed to the highly transmissible nature of Omicron and the nature of congregate care settings. Higher death rates may be attributed to the high-risk status of those who reside in nursing homes.
COVID-19 data that includes settings across the care continuum is essential to comprehensively assess the impact of COVID-19 on seniors and people with disabilities. To date, the federal government only requires data on COVID-19 cases, deaths, testing, and vaccinations from Medicare and Medicaid-certified nursing facilities. However, there is ample research suggesting that that LTSS users in congregate community based settings outside of nursing homes also face elevated risks of COVID-19 infection due to health conditions and the higher levels of infection transmission in some non-nursing facility congregate settings such as assisted living facilities and group homes. Nearly one million people live in assisted living facilities, a population roughly the size of the nursing home population, but one that lacks comparable data. The data gap for all settings across the care continuum makes it difficult to assess the full impact of the pandemic on seniors and people with disabilities residing outside of nursing homes. Additionally, the federal health care worker vaccine mandate does not apply to all settings across the care continuum, possibly leading to COVID-19 infections with resulting staff shortages in these settings.
Data is not available on the demographics of those who died in long-term care settings, making it difficult to understand the impact of race/ethnicity, age, vaccination status, and other key characteristics on infection severity or likelihood of mortality in LTCFs. While federally available data provides insight into the numbers of cases, deaths, and vaccinations as reported by nursing homes, gaps in data limit the ability to assess the impact more directly among residents and staff, by patient characteristics. Overall, cases and deaths in nursing homes appear to be declining. However, this analysis confirms the disproportionate toll of COVID-19 on people living and working in LTCFs and highlights the importance of comprehensive, timely, and accurate data.
Wall Street Journal, February 8, 2022
Physicians, losing patience with their patients, forget their obligation to care.
Doctors are increasingly refusing to treat the unvaccinated. Physicians in Alabama, Florida, the District of Columbia, and Toronto have dismissed unvaccinated patients from their practices. A Texas task force has considered reserving beds in intensive-care units solely for the vaccinated. . . But refusing to care for the unvaccinated can itself inflict harm. Nearly 1 in 5 healthcare workers have left their jobs during the pandemic. Nursing shortages abound. There’s no guarantee that patients dismissed by one clinician will find another. Patients may not be able to fill prescriptions or manage chronic conditions. Many will eventually wind up in the hospital, which can only worsen staffing and supply shortages. Doctors who seek to punish the unvaccinated end up punishing their own colleagues.
What’s more, refusing to treat patients amplifies divisiveness at a time when cultural and ideological divisions seem stronger than ever.
Wall Street Journal, January 31, 2022
Covid-19 has been directly responsible for most of the fatalities, but the disease is also unraveling families and communities in subtler ways.
Federal authorities estimate that 987,456 more people have died since early 2020 than would have otherwise been expected, based on long-term trends. People killed by coronavirus infections account for the overwhelming majority of cases. Thousands more died from derivative causes, like disruptions in their healthcare and a spike in overdoses.
Covid-19 has left the same proportion of the population dead—about 0.3%—as did World War II, and in less time.
Unlike the 1918 flu pandemic or major wars, which hit younger people, Covid-19 has been particularly hard on vulnerable seniors. It has also killed thousands of front-line workers and disproportionately affected minority populations. . .
It could take years to fully realize the lasting social changes the pandemic and its human toll will yield. Major wars can redraw maps, shift the balance of global power and leave memorials in the nation’s capital. The pandemic is a reminder our biggest enemies are often too small to see. . .
In 2019, the U.S. recorded 2.85 million deaths, following a climb of about 1.6% a year over the decade as the population grew and aged. In 2020, the number ballooned by 18.5% to 3.38 million deaths. Last year, provisional data show 3.42 million deaths.
The CDC has registered roughly 875,000 Covid-19 fatalities on death certificates. In at least 90% of those cases, the disease is listed as the underlying cause, the agency said. For the remainder, it was listed as a contributing cause. . .
One study, published in the scientific journal PLOS One last September estimates that roughly 7.4 million years of life were lost in the U.S. in 2020 alone, with 73% of them attributable directly to Covid-19. . .
The federal government has counted more than 145,000 Covid-19 deaths among nursing-home residents, most in the pandemic’s first year, before vaccines curbed the risk faced by this vulnerable population. At least 2,250 nursing-home staffers have died from Covid-19, too.
Overall, the excess death toll includes about 140,000 people of prime working age—25 to 54, according to the Journal’s analysis.
Through the end of December, about 192,500 children under 18 have lost a parent or another primary caregiver to Covid-19, said Susan Hillis, lead author of a recent CDC report on the topic. Nonwhite children faced the steepest loss, she said. . .
The pandemic exposed racial and ethnic disparities that already lurked in health outcomes. These disparities are one reason why the U.S. had a particularly high proportion of people who died in middle age or younger, said Dr. Woolf, who has studied the issue. . .
In explaining the overall excess death count, epidemiologists believe many Covid-19 deaths were never properly recorded as such, and that there were significant fatalities resulting from other kinds of health and social problems that became amplified by the pandemic. . .
A surge in deaths among people with Alzheimer’s disease and dementia underscored a more direct impact: major disruptions in care, including as Covid-19 barreled through nursing homes and isolated seniors with significant care needs from their families. There is also evidence of rising deaths from other issues, including heart attacks, which could be linked to patients avoiding hospitals grappling with Covid-19 cases, physicians have said. Some of these surging health problems appeared most concentrated in the pandemic’s early days. . .
Meantime, U.S. drug overdose deaths, already at record highs, soared about 30% in 2020, and early data show the toll may have worsened last year. The pandemic was destabilizing for people already struggling with addiction, or trying to seek sobriety, parents of recent overdose victims say. . .
Epidemiologists say higher vaccination rates would have saved many people. Some of the hardest-hit places last year, in excess deaths per 100,000 residents, are Southern states with lower-than-average vaccination rates, federal data show. The U.S. has wide disparities in vaccine adoption, recently ranging from a 52.5% full-vaccination rate among Alabama’s eligible population to 83.2% in Vermont and Rhode Island.
Issue #75 – Week of February 4, 2022
Download the Dignity Digest 75:
New York Times (free access), January 15, 2022
Annual U.S. overdose deaths recently topped 100,000, a record for a single year, and that milestone demonstrates the tragic insufficiency of our current “addiction as disease” paradigm. Thinking of addiction as a disease might simply imply that medicine can help, but disease language also oversimplifies the story and leads to the view that medical science is the single best framework for understanding addiction. Addiction becomes an individual problem, reduced to the level of biology alone. This narrows the view of a complex problem that requires community support and healing. . .
It’s imperative to be careful about these types of deterministic stories. Such reductionistic narratives were repeatedly used as a justification for racist, oppressive crackdowns in the United States, on Chinese opium smoking at the turn of the 20th century and on crack cocaine in the 1980s, which was painted as a problem primarily in Black neighborhoods. Today, amid the opioid overdose epidemic, addiction is more likely to be called a disease, but the language of disease has not done away with the misleading notion that drugs hold all the power. . .
Not all drug problems are problems of addiction, and drug problems are strongly influenced by health inequities and injustice, like a lack of access to meaningful work, unstable housing, and outright oppression. The disease notion, however, obscures those facts and narrows our view to counterproductive criminal responses, like harsh prohibitionist crackdowns.
In contrast, today, descriptions of “brain disease” imply that people have no capacity for choice or self-control. This strategy is meant to evoke compassion, but it can backfire. Studies have found that biological explanations for mental disorders increase aversion and pessimism toward people with psychological problems, including addiction. What’s needed now more than ever, with overdose deaths on the rise, is not fatalism or dehumanization, but hope. . .
[A]ddiction is profoundly ordinary, contiguous with all of human suffering. We cannot end it, we certainly cannot cure it, and medicine alone will never save us. But if we drop the idea of disease and open up to a fuller picture of addiction, it will allow for more nuance, care and compassion.
Issue #74 – Week of January 28, 2022
Download the Dignity Digest 74:
Associated Press, January 27, 2022
[Brigham and Women’s Hospital] is defending itself after a man’s family claimed he was denied a new heart for refusing to be vaccinated against COVID-19, saying most transplant programs around the country set similar requirements to improve patients’ chances of survival. . . The hospital said research has shown that transplant recipients are at higher risk than non-transplant patients of dying from COVID-19, and that its policies are in line with the recommendations of the American Society of Transplantation and other health organizations.
Issue #73 – Week of January 21, 2022
Download the Dignity Digest 73:
Issue #72 – Week of January 14, 2022
Download the Dignity Digest 72:
Report in the *Wall Street Journal, January 11, 2022
Cases among staff climb to a new high, while the tally among residents is near the record, according to CDC data. . .
The Covid-19 surge fueled by the Omicron variant is hitting nursing homes hard, with the highest number of cases ever documented among staffers and a near-record tally of residents also testing positive, according to new federal data.
The increases among staff are posing an operational challenge for facilities that have been struggling with worker shortages for months, while a surge in patient cases threatens a return of serious illness and death among residents.
In the week ending Jan. 9, there were 32,061 new confirmed Covid-19 cases among nursing-home residents, up from 18,186 a week earlier and 6,406 the week before that, according to new Centers for Disease Control and Prevention data.
The recent week’s total was close to the highest documented weekly level, which surpassed 34,000 in December 2020. The CDC data only go back to late May 2020.
Cases among staffers are rising even more sharply. In the most recent week of CDC data, there were 57,243 Covid-19 cases among nursing-home staffers, 36% higher than the previous week’s total and nearly double the peak the CDC documented in December 2020. . .
The swelling Covid-19 case numbers in nursing homes are also feeding worries that the facilities could see another wave of serious illness and mortality among their frail occupants, who routinely accounted for a third or more of Covid-19 deaths in the U.S. during early periods of the pandemic. . .
About 87% of nursing-home residents are vaccinated, and about 62% of those people have received a booster dose, recent CDC data show. The rate of Covid-19 cases is much lower among those who have gotten a third vaccine shot, a CDC spokeswoman said. . .
Webster at Rye, in New Hampshire, had no Covid-19 cases among residents until an outbreak in November 2021, when 32 were infected with the virus and six died. Residents were all vaccinated and had been scheduled to receive their booster shots when the outbreak happened.
Report in the *Wall Street Journal, January 10, 2022
Two co-living communities set to break ground this year seek to address loneliness, as well as the caregiving and affordable-housing shortages, in the U.S. . .
The U.S. is facing an aging population, a shortage of caregivers, a dearth of affordable housing and an increase in social isolation that threatens well-being. Some think what we really need is Magic.
That is, multi-ability, multigenerational, inclusive co-living, or communities where young and old, families and singles, live side by side, supported by inclusive design, technology, and neighbors. Rethinking community in this way could reshape how and where older adults and people with disabilities live and receive care, while building symbiotic relationships between people of all ages, supporters say.
Magic is the brainchild of geriatrician William Thomas, who spent decades working to improve long-term care. Spurred by a belief that segregating older adults, as well as people with special needs, negatively impacts their well-being, Dr. Thomas co-founded Kallimos Communities to develop neighborhoods based on Magic principles. Groundbreaking is expected to begin in the second half of 2022 on two neighboring 7.5-acre communities in Colorado—the first of what he hopes will be many across the country. . .
Intentional intergenerational models exist in small pockets around the country, where preschools operate in assisted living facilities, and on a grand scale in Singapore, he says, where the government is spending $2.4 billion to build three-generation flats and housing developments that have space for both elder care and child care.
Creating new communities, rather than offering services in existing ones, faces special challenges, including startup costs and getting people to move into them. About 70% of adults 50 and older want to “age in place,” remaining in their homes for the long term, according to a 2021 AARP survey of nearly 3,000 U.S. adults.
Issue #71 – Week of January 7, 2022
Download the Dignity Digest 71:
Nursing homes at a tipping point: Many are forced to freeze admissions, stranding patients in hospitals for weeks
News Article in the Boston Globe *, January 5, 2022
Already crowded hospitals across Massachusetts are being forced to keep patients on their wards for weeks after they would otherwise be discharged for rehabilitation or long-term care because there are so few available spaces at nursing homes struggling to stay open amid the Omicron surge. . .
Nursing home industry leaders say they are verging on a crisis. Acutely short-staffed even before the surge, they are facing growing numbers of workers sidelined by infections, spot shortages of rapid test kits, and a state rule many say is outdated that forces them to intermittently freeze admissions. As a result, hospitals across the state, slammed with record numbers of severely ill patients sick with COVID and other conditions, are facing critical bottlenecks at a time when their capacity is at peak levels.
Fixing Massachusetts’ nursing homes is a complex problem; here are some of the ways lawmakers are trying to do it
News Article in the Berkshire Eagle, January 5, 2022
Better wages for workers, improved reimbursements for facilities and increased support for nursing home alternatives are all pieces of the complicated puzzle that is nursing home reform
Massachusetts needed nursing home reform even before the pandemic, people say. Now, the stakes are higher.
State Sen. Patricia Jehlen, a Somerville Democrat who co-chairs the Joint Committee on Elder Affairs, said she believes the pandemic has moved legislative leaders to pursue changes.
Even so, addressing long-term care problems in Berkshire County — and across the state — demands different solutions.
Better wages for workers, improved reimbursements for facilities and increased support for nursing home alternatives are all on the table, Jehlen said. . .
The elder affairs committee is weighing the association’s testimony along with the support that the Dignity Alliance and its member organizations have provided for the bill, said state Rep. Thomas Stanley, D-Waltham, who co-chairs the committee with Jehlen. . .
A “nursing home quality jobs initiative” would require MassHealth to fund a “living wage rate add-on” for care workers, and another bill seeks to stabilize nursing facilities’ finances.
Former state Sen. Richard Moore, who serves as Dignity Alliance’s legislative chair, said the coalition has reviewed those proposals and declined to support them due to the potential for “cost-shifting” that would increase profits for facility operators.
“If MassHealth picked up the cost, are the savings going to be passed on as a profit to the owners?” Moore asked. “We’ve been working with some folks from the SEIU that represent some of the workers in nursing homes, and I think they tend to have the interests of the workers in mind more than management does.”. . .
Even before the pandemic, Massachusetts residents had been showing greater interest in alternatives to nursing homes.
More older adults are choosing to “age in community” or “age in place” rather than seek institutional care in nursing homes, the Executive Office of Health and Human Services reported in 2019. One in six nursing homes in the state, it found, had low occupancy, defined as filling below 80 percent of available beds.
Still, some regulations and restrictions prevent people who may not need nursing care from accessing more independent alternatives, Jehlen said.
“There are people in nursing homes who don’t need to be there if we strengthen the rest of the continuum,” she said. “In order to pay adequate rates for people who need that care, we need to strengthen the less expensive and less restrictive services.”
Essay in Quartz, June 25, 2020
“There’s been a very interesting divide between disability rights groups and, for want of a better expression, elder rights groups, because the elder rights groups seem to be okay with some form of institutionalization,” said Gerard Quinn, an Irish legal scholar who helped draft a landmark United Nations convention on disability rights, and who has recently argued for the gradual abolition of nursing homes.
But since Covid-19, Quinn added, “a lot of the elders rights groups now are turning completely around and beginning to understand the importance of living well in the community with adequate supports.”
In the US, such ambitions have run up against the challenges of remaking the nursing home industry, largely funded by billions of dollars in federal Medicare and Medicaid payouts. . .
[T]he stakes of reform, advocates agree, are high — and have only become clearer during the current pandemic. “We have, since Covid began, received a lot of calls from people desperate to leave facilities,” said Dooha. Through calls from residents and staff, she added, her organization has “learned that conditions in facilities are utterly deplorable.” Those conditions, Dooha says, should cause more people to question a system that, in the US alone, houses around 1.3 million people. . .
A major 2018 survey from AARP, the aging-advocacy organization, reported that close to four in five Americans aged 50 and above prefer to age at home. “Most older people are anxious about the prospect of moving into a nursing home,” a recent analysis of studies in high-income countries reported, and studies consistently show high rates of depression in facilities. . .
For years before Covid-19, researchers have warned that norovirus, influenza, and other infections can spread rapidly in nursing facilities. Those risks have increased in recent years, as nursing homes take in more short-term residents who are getting rehabilitation after hospital visits, and who potentially bring infections into the building with them. . .
Advocates say that these and other problems have only intensified as large companies began buying and consolidating nursing home franchises. Around 70% of nursing homes in the US are under for-profit ownership, and, since the 2000s, private equity firms have purchased many facilities, hoping to cut costs and increase profits. One recent analysis, published by the New York University Stern School of Business, found “robust evidence” that private equity buyouts were linked to “declines in patient health and compliance with care standards.” . . .
What a new system may look like is unclear, and some advocates argue that the structural problems that plague nursing homes won’t be solved by increased regulation or funding. “You can’t throw any more money into this institutional model.” . . .
And experts and advocates agree that obstacles to deinstitutionalizing elder care abound. Cameron, the Adapt organizer, points out that it would be difficult to close nursing homes without offering more affordable housing options in the community. Another limiting factor is labor. Transition to home-based care would require more home health care workers—many of whom work for lower pay, and with fewer labor protections, than their counterparts in facilities. In some places, there are already too few people willing to fill those roles.