The Future of Long Term Service and Supports: Centering the Voices of Older Adults in Massachusetts

The pandemic has laid bare the shortcomings of the Long Term Service and Supports (LTSS) system for older adults here in Massachusetts and around the country. Older adults have experienced higher rates of infection and death, particularly in communities of color and in areas with higher rates of LTSS use.

Robust conversations have begun among academics, policymakers, advocates and industry leaders to identify solutions to improve safety and create a sustainable LTSS system. As most impacted, older adults and family caregivers must be at the center of these discussions.

With generous support from the Tufts Health Plan Foundation, Community Catalyst, Massachusetts Senior Action Council and the Leading Age LTSS Center @ UMass Boston have launched a new three-year initiative, The Future of LTSS: Centering the Voices of Older Adults. This project will engage older adults and family caregivers across the Commonwealth to assure that their views guide the development and promotion of recommendations for transforming the way we provide and pay for LTSS.

Project objectives include:

  • Gaining a deeper understanding from older adults and family caregivers across Massachusetts – particularly those from historically underserved communities – of their experiences with the LTSS system (before and during the pandemic) and how the system can be transformed to better address and account for their needs, preferences and values.
  • Engage Massachusetts older adults and family caregivers as agents of change as the Commonwealth develops the reforms necessary to ensure safe, reliable and high-quality LTSS in a range of care settings that meet the varied needs of older adults and families.
  • Learning from, complementing and informing other state and national efforts to improve the LTSS system.

Project partners will conduct listening sessions as well as field a statewide survey of older adults and family caregivers, with emphasis on those from Black and brown communities. Data gathered from these activities, combined with a set of key stakeholder interviews, will ground the development of recommendations for the policy and practice change necessary to create an LTSS system that delivers high quality care to older adults and family caregivers across Massachusetts.

Project partners will then support older adults/caregiver leaders as they share their insights on LTSS reform with policymakers and the public. They will also share strategies and lessons with advocates, older adults and family caregivers working to reform the LTSS system in other states and nationally.

For more information or to participate in this important effort, please contact:

Renée Markus Hodin, Deputy Director, Center for Consumer Engagement in Health Innovation rmhodin@communitycatalyst.org

Carolyn Villers, Executive Director Massachusetts Senior Action Council cvillers@masssenioraction.org

Marc A. Cohen, Ph.D. Professor, Department of Gerontology, UMass Boston; Co-Director, LeadingAge LTSS Center @UMass Boston   marc.cohen@umb.edu

The Pandemic’s Long-Term Impacts on Food Insecurity Among Older Adults, and the Benefit of Federal Help

A tragic aspect of the pandemic’s prolonged economic downturn – the rising rate of food insecurity in the United States – could impact older, poorer adults and their families for years to come, according to a study by researchers at the LeadingAge LTSS Center @UMass Boston and the National Council on Aging.

Two groundbreaking issue briefs underscore the long-lasting effects of pandemic-related food insecurity among older adults, especially older women and people of color.

The research suggests that while enhancements to the Supplemental Nutrition Assistance Program (SNAP) were likely effective in temporarily decreasing pandemic-induced food insecurity among vulnerable older adults, the increased SNAP benefits provided by the American Rescue Plan need to be made permanent and reflect increased food costs to overtake the growing number of older households expected to face food insecurity. Continue reading

Q&A with Jo Owens, author of A Funny Kind of Paradise

Jo Owens became a nursing home aide in Canada out of a need for money, and came away with her calling. And from that experience, the pain and the human glory, came her debut novel A Funny Kind of Paradise, set in a Canadian nursing home.

The Vancouver Sun wrote “Owens…captures the skill and tenderness of caring for someone at the end of life in direct and unvarnished prose…Each [care aide] …is richly drawn and complex… [and the novel] serves to illuminate a vital profession that has been rarely documented in fiction.”

“Her writing is richly informed by her 20 years working as a care aide in Victoria, British Columbia,” said interviewer Len Fishman, head of the University of Massachusetts Gerontology Institute. And their conversation continues from there. Thanks to Taryn T. Hojlo for the interview transcription.

Author Jo Owens

LF: Let’s start by asking why you became a care aide and what’s kept you in that profession for 20 years?

JO: Actually, desperation drove me there. Much like Molly [a character in the book], an aide suggested that I take this job and that I would be good at it, and I absolutely needed money. That got me over the initial stages when it was terrifying to be doing something so new. What keeps me at it is that I have a calling for this work. I definitely ended up in the right place.

LF: The book’s narrator is Francesca, or Franny. She’s in her late sixties, and a stroke has left her unable to move, walk, talk, or eat, but Franny’s cognition is completely intact. Tell us more about her, and let’s start with you reading a passage.

JO: [reads from A Funny Kind of Paradise – youtube link]

“Franny says, ‘The stroke has left me emotionally labile, and the feelings I’ve struggled so hard to contain (or at least disguise in shrouds of anger) are naked for all the world to see. I literally lack the muscular strength to suppress them.

But here is the gift. I don’t care. I don’t care! My right hand is useless, I can’t speak and more people have seen my bare ass in the last year than if I was a streaker at the opera, because I need my diaper changed, for God’s sake. Do you think I care if you see me cry?’”

LF: Tell us a little more about her.

JO: Francesca was a strong, independent woman who ended up raising her two children on her own. She’s a home-based small business accountant, and she kind of came at life as though…if you attacked it with hammer, you’re going to get the job done. That’s not necessarily the best way to parent children, so like everyone else, she has her own baggage and things to think about. Originally, she was the kind of person who would say to herself, as you often hear people say, “If that happens to me, I would rather die.”

LF: She recalls a time when she accompanied her son’s class to a nursing home around Christmas time. When they leave, she tells him, “I’d rather be dead than have to live in a place like that.” Later she thinks, “I changed my mind when I came here.” What changed?

JO: First of all, I think that the will to live is extremely strong. We think that we can’t tolerate this, but it’s amazing what humans can get used to and even learn to embrace. Partly, that’s what’s going on, but also Franny was fortunate to end up in a good facility where she has loving care and she’s still engaged in life. She enjoys watching the care aides that work around her and gossip freely in front her because Franny can’t repeat what she’s hearing. She thinks about her children and she’s still engaged with her son who comes to see her. There’s enough in her life to make her life meaningful. This is my experience at work. When suffering becomes acute, residents do say they’d rather die. And we do hear that. But generally speaking, I find that people want to live. And they continue to want to live. Much longer than we’d think.

LF: Franny’s got issues – fear and anger are her “left and right crutches” as she puts it – and she’s really trying to work through them. Have you seen residents that you’ve cared for grow emotionally as she does?

JO: Absolutely. Absolutely I have seen people change and grow. We do. Our situations force us to. It was the famous psychologist, Karen Horney, who said, “Life itself remains a very good therapist.” Things happen. We’re forced to change, and life doesn’t stop because you’re forced into care. You’re still going to be changing. For Franny personally, I used my imagination obviously to create what’s happening to her, but as she thinks about what is meaningful in life, thinks about what she can change and what she can’t change – particularly with regard to her son, her missing daughter, and how she behaved in the past – as new residents come into her life, she is adjusting her thinking and she’s moving along in her mind, as people do. And yes, I’ve seen that in care.

LF: So, as you’ve mentioned, Franny’s brain is sharp and because she can’t talk the aides are actually more willing to speak their minds in front of her, even confide in her. What were you hoping we’d learn, through her, about the inner workings of a nursing home?

JO: One of the reasons I set this novel in a five-bed ward is because I wanted to be able to show Franny listening to people talking all the time…I wanted people to see how human your aides are…Every one of your [aides] comes with their own set of baggage. And I wanted to show some of the things that the care givers are trying to balance, some of the things that they have on their plate. The struggle that is part of life, trying to triage six to eight – or in worse scenarios, 12 to 14 – residents. Who eats what, who do you go to first? How can you give everyone good care, not just the ones that can speak up and demand it, but also the ones that are immobile and deserve just as much of your love and attention? I wanted to do that in a way that wasn’t completely preachy, and boring and I really hope that I achieved that goal because what happens in [nursing homes], in that private little world, is frequently not seen, and I wanted to show it.

LF: In Franny’s world, licensed nurses, whether it’s LPNs or RNs, are distant figures and doctors are almost entirely absent; it’s all about the aides. Is this what it looks like on the inside?

JO: I’m sure I showed quite a bit of bias there because I am a care aide, so I think it’s all about me [laughs]. But, in terms of the bulk of time caring, aides are the faces that the residents are going to see the most. I see my people every day, whereas the doctor might see you every two weeks if you have a problem, less if you don’t. The LPNs are going to see you every day also to give you your pills and if you have a dressing change, you’ll see them a little bit more. The RN, as I mentioned to you before, at my facility the RN has one hundred people. They’re going to deal with problems. So, it may be very difficult to even know their name. The care aide is the person that they see. I did an interview with a person in Toronto whose father was in care. He told me that the care aides became his father’s family. Even though I only know a small portion of my resident, the part that they are now – the whole iceberg of their previous life is unknown to me except for a little bio that might be done by a social worker or a family member – I have this tiny little part of this person, right? But they’re still mine. I have them every day. I know how they want their socks pulled up – do you want a little space at the end, or do you want them nice and snug? Do you want your tea spun like this or like that? They’re mine.

LF: I want to ask you about families of nursing home residents, especially those that visit frequently. What qualities do staff most appreciate?

JO: The first thing that’s coming to my mind, Len, is forgiveness. Maybe I’m only speaking for myself, but I want to be forgiven for my imperfections. I’m going to do the very best that I can, and sometimes it’s going to feel like it’s not enough because sometimes it’s not enough – I just run out of time. I forgot to bring your husband down for his visit, which is now going to be downstairs in the village square, or I’m not able to brush your family member’s teeth, their hair isn’t…Yeah, I want to be forgiven for the fact that I can’t do a perfect job. Maybe other care aides would speak differently.

LF: Two aides in your book are talking about the difficult daughter of one of their residents. The mother is pretty difficult, too. And one aide sums up her philosophy as follows, “If we only looked after the people who deserved kindness, it’d be a skinny job.” This is a telling commentary on the challenge of being a good caregiver, so tell us about it.

JO: This reminds me of a fridge magnet I once saw that said, “The staff are human and will react unpredictably when abused,” as opposed to being a robot. Every healthcare worker has a right to be treated like a human being. We have little signs in our elevator saying that if you don’t treat the staff with respect, you will be required to leave. But the people that I’m working with are emotionally labile and sometimes they have difficulty controlling any number of their emotions, whether it’s anger or frustration or – sometimes they yell at us, sometimes they hit us.

LF: In recognizing the time that we’re living in, in the U.S., residents account for about 40 percent of COVID deaths nationally. In Canada, the percentage is even higher. It seems to me that this hasn’t caused as much of an outcry as one might expect. What do you think?

JO: So, this is a question I was asked in the NPR interview and so I gave it a lot of thought, Len, because I had difficulty answering it. And here’s the reason I had difficulty: I do not want to contribute to our phobia of death. There is a time when it is good to die. At the same time, how we treat the more vulnerable members of our population during a pandemic is a measure of our integrity as a society. It’s really important not to get the idea that any group in our society, whether it’s their age, their ethnic background, their financial worth, their sexual orientation, that that group is in any way disposable, because that’s the kind of thinking that Hitler had. It is not acceptable.

LF: What do you want people to know about your job?

JO: Well, I was hoping that with my book I would be able to increase empathy for the people that live and work in care. But what would I want them to know? We’re here and we’re alive and just as important as anybody else – really that’s the only message.

Health Affairs: The Middle Ground For Fixing Long-Term Care Costs: The WISH Act

Our Marc Cohen and co-author Stuart M. Butler published the following piece this week in Health Affairs, revisiting some of the issues we wrote about earlier while taking a deeper look at this long-standing problem.

The Middle Ground for Fixing Long-Term Care Costs: The WISH Act is Copyright © 2021 Health Affairs by Project HOPE – The People-to-People Health Foundation, Inc.

Jan Mutchler to head UMass Boston Gerontology Institute

Professor Jan Mutchler, a faculty member at University of Massachusetts Boston for more than 20 years and the founding Director of the Center for Social and Demographic Research on Aging (CSDRA), has been appointed director of the Gerontology Institute at the university’s John W. McCormack Graduate School of Policy and Global Studies.

Jan Mutchler

Prior to founding CSDRA (located within the Institute) in 2012, Mutchler served as Graduate Program Director, Chair of the Gerontology Department, and Associate Director of the Institute. Her scholarship has focused on diversity, inequality, and disparities in aging, seeking to strengthen scholarship and its impact for our growing and diverse older population.

Mutchler produces the national Elder IndexTM, a one-of-a-kind, county-by-county measure of the income needed by older adults to maintain independence and meet their daily living costs while staying in their own homes. The Congressional Budget Office cites the Elder Index as the only retirement adequacy measure that is oriented specifically to older people and takes into account the unique demands of housing and medical care on older budgets.

Under her leadership, the CSDRA and colleagues across UMB also recently issued a report, “Aging Strong for All: Examining Aging Equity in the City of Boston,” documenting disparities across three dimensions that impact quality of life — economic security, health, and social engagement. The report aims to inform the City’s public agencies, businesses, cultural, educational, and religious institutions, and community groups as they seek to change policy and practices to enhance the quality of life for Boston’s older residents.

Mutchler received her B.A. degree from the University of Mississippi and her doctorate from the University of Texas Austin. She takes over for Len Fishman, who announced his retirement earlier this month after serving seven years as director of the Institute.

Mutchler has been highly successful in growing the center and has been a trusted resource and counsel for state policymakers and community leaders. A recipient of the Chancellor’s Award for Distinguished Service in 2016, McCormack Graduate School Dean David Cash said Mutchler embodies the program’s ethos of scholarship, public service, and student engagement through research and teaching.

“Gerontology and the study of how to improve aging in America and around the world is at a critical juncture, and Jan’s leadership at the Institute ensures that the institute will catalyze a new era of cutting-edge research and impact on policy makers,” said Cash.

“The work of the Gerontology Institute is critically important, especially in this post-pandemic era,” Mutchler said. “The experiences of older people during the pandemic have highlighted the importance of research, policy and advocacy focusing on aging. At the same time, our work seeks to recognize and address the detrimental role racism plays in making growing old especially challenging in some communities. The work that our students, faculty and fellows do on a daily basis aims to identify strategies for improving quality of life for older people and promoting aging equity, both at home and around the world.”

The Director is responsible for guiding the Gerontology Institute and its four centers as leading international research, policy, and service centers focused on aging. By enhancing the impact of research and service activities carried out through the Institute’s Centers and by its more than 50 fellows, the director pursues opportunities for McCormack and the Gerontology department’s faculty and students, as well as strengthens collaborations with external partners, with the goal of increasing the impact of their work and promoting better and more equitable outcomes for older people, their families and communities.

Under Mutchler’s leadership, the Gerontology Institute will work to continue its upward trajectory in external funding and to strengthen its scholarship, public engagement, and visibility as a national and international leader in aging research and service to older populations. These efforts will encompass the Gerontology program’s efforts to expand its work at the intersection of aging, race, and anti-racism aging policy. Combined, these efforts will strengthen the Gerontology Institute and Department’s ability to attract and support faculty working in these areas, and help train diverse students from communities under-represented in the ranks of researchers, policymakers and advocates for all aging populations.

About the Gerontology Institute

Created by the Commonwealth in 1984, the Gerontology Institute provides research, education and public service in the field of aging. Four centers bring special expertise in targeted areas. The Pension Action Center has recovered over $65 million for low and moderate-income retirees whose pension benefits have been wrongfully denied. The LeadingAge LTSS Center @UMass Boston works to improve the quality and effectiveness of services for seniors across the continuum of housing and health care services. The Center for Social and Demographic Research on Aging conducts research in collaboration with government agencies and NGOs, and produces the Elder Index which measures the true cost of living for older adults in the U.S. The Osher Lifelong Learning Institute provides 140 courses to 1000 older adults in Greater Boston. The Gerontology Institute is located within the McCormack Graduate School of Policy and Global Studies.

WISH Act and UMass Boston’s Marc Cohen Hope to Transform American Elder Care

Marc Cohen and other academics and policy analysts saw the writing on the wall years ago. With roughly 10,000 Americans turning 65 every day, a decades-old medical and financial storm is now on the horizon when it comes to how to provide and pay for long-term services and supports (LTSS) for elders.

The number of family members available to care for aging relatives is dwindling, most families can’t afford the time or expense of caring for an older relative, and divisive, uncompromising politics in the United States – despite these long-approaching clouds – have done little to tackle the issue head on. More than half of us will need LTSS in old age, yet less than 10 percent of us have insurance to help cover the costs.

“Everyone in their gut knows that there’s this issue out there,” said Cohen, co-director of the LeadingAge LTSS Center at UMass Boston, and research director of the Center for Consumer Engagement in Health Innovation at Community Catalyst. “But very little has been done about it.”

Marc Cohen, PhD

Marc Cohen, PhD

Cohen and his peers spent years working on an idea first put forward by academics and researchers that were part of the Long-Term Care Financing Collaborative, and then expanded on this idea in a paper presented at the Bipartisan Policy Center. At times, their suggestions gained traction, but not among the people who mattered most – the politicians who could enact legislation.

On June 30th, New York Congressman Tom Suozzi, a Democrat representing sections of Long Island and Queens, introduced the Well-being Insurance for Seniors to be at Home (WISH) Act, which addresses how to finance long-term care for older adults, the first new solution put forth in almost a decade.

“With the number of disabled elders expected to double in the coming years, fewer family caregivers are available for these aging Americans, and the market for long-term care insurance is not currently sufficient to address these demographic challenges,” Suozzi said in a press release when the legislation was released. “The WISH Act would save the Medicaid program and millions of Americans from financial ruin, would allow people to age at home with dignity, and would create millions of good-paying, middle-class jobs in the home health care industry.”

Private and public interests had always stood in the way of past legislation aimed at this issue. The WISH Act attempts to overcome this divide by creating a public-private partnership based on social insurance for catastrophic LTSS expenses, coupled with family help, savings and private long-term care insurance for early up-front costs.

The idea is that such a comprehensive insurance solution – built on well-defined public and private roles — would enable older adults to stay at home if they wish instead of needing to deplete their and their family’s life savings and enter Medicaid-funded nursing homes or access more limited Medicaid-financed home care services.

In addition, the legislation is aimed at helping low-income individuals and their families whose savings are often devastated when a loved one requires long-term care, forcing many to make tough decisions about work and incomes versus their relative’s long-term care needs.

In mending this dangerous trend, the legislation would also promote health equity by providing a financial parachute to those families that would suffer most under the current system – a system which leaves the Medicaid program financially stretched and unable to meet the needs of its beneficiaries and pay rates necessary to support a high-performing workforce.

Cohen also views the legislation through a feminist lens. For decades, working women – who are the primary family caregivers of disabled elders — have been forced to weigh their careers and income versus staying at home to care for an elderly relative. If successful, the WISH Act would empower more working women to stay in the workforce, because the costs associated with bringing in home care aides, for example, would be paid for through the insurance program.

The legislation would create a new Long-Term Care Insurance Trust Fund that would be used to pay for the “catastrophic” period of long-term care for adults requiring many years of help. At the same time, the legislation would have private insurance companies offer affordable coverage plans for older adult’s initial years of disability. And it would be paid for with a social insurance contribution by all workers and their employers, each contributing about 0.3 percent of wages.

The legislation was largely inspired by the 2018 paper written by Cohen, Judith Feder of Georgetown University and Melissa Favreault of the Urban Institute. Their work was funded in part by the Office of the Assistant Secretary for Planning and Evaluation at the Department of Health and Human Services, among others.

The way that work came about mirrors the political headwinds the WISH Act legislation will face on a very divided Capitol Hill.

“We went back and forth for two years,” Cohen said. He came to the issue with a perspective shaped by his work with the private insurance sector, while Feder came from the public policy side, a big philosophical divide concerning what private industry and the government could and should do when it comes to such a challenging and difficult issue like long-term care financing.

“Very early on when we butted heads, we both agreed that we would not let “the enemy of the good be the best” and that ideological purity would have to be put aside so that we could focus on a practical solution that could do a lot of good,” Cohen said.

Their paper was published in January 2018, got some attention, but then languished until just before the pandemic hit in 2020. In late November 2019, Dr. Joanne Lynn, a geriatrician and hospice physician who is a senior analyst at Altarum and who was working at Congressman Thomas Suozzi’s office, invited Cohen to fly down to Washington, D.C., to meet with the Congressman and his team, where the initial sketches of the WISH Act were discussed. Throughout 2020 and the first six months of 2021, there were multiple meetings which were led by Dr. Lynn responding to concerns of stakeholders and dealing with the minute details that come with developing a new and major piece of legislation.

After a career spent touting the rationale for such legislation, this was the first time Cohen played a direct role in helping to shape legislation. “During that process it became clear to me that this is not a rich versus poor or Democrat versus Republican issue, but rather, a human issue that affects us all and really needs to be addressed,” Cohen said.

Dean David Cash announces retirement of Institute Director Len Fishman

I write to announce that Len Fishman, after serving seven years as director of the Gerontology Institute at the McCormack Graduate School of Policy and Global Studies, will be retiring on August 31.

Gerontology Institute Director Len Fishman

A nationally recognized leader in health care and aging, Len’s priorities as director were guided by two goals. First, increasing the institute’s relevance, reputation and influence through its research and policy work. Second, boosting external funding.

He achieved both. Thanks to the Institute’s enterprising faculty and fellows, external funding from grants nearly tripled during Fishman’s tenure, and private donations soared. Financial support for students increased two and a half times, opening doors for future scholars and policymakers.

Fishman also helped the Institute become even more prominent in its signature areas of research on older people, including economic insecurity, race- and ethnicity-related health disparities, healthy aging, and age-friendly communities, while striving to bring that work to the attention of policymakers and the general public through robust communication.

The Gerontology Institute also deepened its expertise in long-term services and supports (LTSS) under Fishman by adding a fourth center — the LeadingAge LTSS Center @UMass Boston. This three-way partnership among Community Catalyst, LeadingAge and UMass Boston unites researchers and policy analysts in academic and applied settings, an innovative collaboration illustrative of Len’s knack for building strategic alliances whose whole is greater than the sum of their parts.

Fishman and Gerontology Department Chair Jeff Burr treated their respective units as a united enterprise, resulting in increased productivity of faculty and more opportunities for students to conduct research, be mentored, and earn money for their education. Fishman and Burr led the recent effort to establish the Frank Caro Scholarship for Social Justice in Aging. Named after one of the UMass Boston Gerontology program’s founders, the fund has raised approximately $370,000 thus far. The funds will be used to recruit and support doctoral students from under-served communities.

“The last seven years have been the best years for gerontology at UMass Boston and a lot, a lot, a lot of the credit goes to Len,” Burr said.

Len came to UMass Boston after serving for 12 years as CEO of Hebrew SeniorLife, New England’s largest nonprofit provider of senior housing and health care. Prior to joining HSL, Len was president and CEO of LeadingAge, in Washington, D.C., which represents 6,000 non-profit senior housing and health care providers in the U.S. and Canada, serving over two million older people. Before that, he served in the cabinet of Governor Christine Todd Whitman as commissioner of the New Jersey Department of Health and Senior Services, where he led the governor’s initiative to unite programs serving older people into one cabinet-level department. He previously practiced law as a health-care lawyer in New Jersey and Pennsylvania.

“We are on the cusp of the greatest demographic transformation in history,” said Fishman. “The human lifespan has increased by more than a third, and very soon, one in five Americans will be 65 or older. Yet we are nowhere near ready to meet the challenges or take advantage of the opportunities presented by these changes. Our gerontology program is a beacon of learning and hope.”

“I will, of course, remain involved in the field of aging. As our chancellor, Marcelo Suarez-Orozco recently observed, population aging is one of the three greatest challenges facing humanity. My generation (me included) has not covered itself in glory in dealing with the other two: climate change and racialized inequity. My retirement will allow me to spend more time on both. It’s been an honor to work with the Gerontology program’s talented faculty, fellows, staff and students, and a privilege to work at the nation’s third most diverse university during this most recent racial reckoning. The demographics of UMass Boston’s students are a preview of what our nation is becoming – they are my greatest source of hope for the future.”