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.

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.

Reinvesting in home and community-based services

How the Biden Administration’s $1.9 trillion relief bill will impact Medicaid in Massachusetts

The American Rescue Plan Act (ARPA) — a COVID-19 relief and recovery package — was signed into law by President Joseph Biden last month. Among the $1.9 trillion relief bill’s provisions is a temporary enhanced federal matching percentage (FMAP) for Medicaid home and community-based services. The FMAP is the proportion of every Medicaid dollar spent paid for by the Federal government. Massachusetts could receive as much as $409.2 million during the one-year period covered.

Prof. Miller discusses COVID-19 relief bill

“One of ARPA’s goals is to strengthen state efforts to help seniors and people with disabilities live in their homes and communities rather than in nursing homes or other institutional settings,” said Edward Alan Miller, PhD, a fellow at the Gerontology Institute at UMass Boston and professor in the university’s Department of Gerontology. “The imperative to do so has been underlined by the COVID-19 pandemic which increased demand for safe, high quality alternatives to institutional settings where morbidity and mortality threats from the virus are greatest.”

Organizations serving vulnerable populations — AARP Massachusetts, the Dignity Alliance of Massachusetts and Disability Advocates Advancing our Healthcare Rights — gathered stakeholders statewide recently to look at how this new funding could be directed in Massachusetts and, in particular, expanding and strengthening home and community-based services. Miller was among the speakers to address the group.

The Centers for Medicaid and Medicare Services (CMS) had already allowed states certain flexibilities in meeting the COVID-19 crisis through the option to adopt temporary changes to their Medicaid programs covering home and community-based services. Furthermore, prior legislation had increased the federal matching rate by 6.2 percentage points across Medicaid services for the duration of the Coronavirus emergency. ARPA increased the federal matching rate by an additional 10 percentage points for home and community-based services (HCBS), specifically. The federal government typically pays for half of Massachusetts Medicaid costs. Combined with the early increase, 66.2% of the Commonwealth’s HCBS costs would be paid for by the federal government under ARPA for one year.

“Key stakeholders see the value of the flexibility ARPA provides to address needs across a range of services and populations needing home and community-based support,” says Miller. “There is particular interest in improving the work conditions of direct care workers, including raising wages and benefits to increase their quality of life and improve recruitment and retention. These are issues that directly impact the quality of care delivered.”

In addition, care recipients and advocates view the ARAP legislation as an opportunity to fund the additional services and supports necessary to maintain older adults and younger people with physical disabilities, developmental disabilities, and severe mental illness at home and in the community, not just during the pandemic but beyond.

One key area the legislation does not detail is whether changes considered by states need to be shared, reviewed, or approved in advance by the federal government. The Massachusetts Office of Health and Human Services is waiting for guidance from CMS before finalizing or implementing plans to take advantage of the enhanced federal match. Although the funding period began April 1, 2021, the state would not lose money if plans were not implemented by that date.

 “Developing strategies and processes that best enable states to take advantage of ARPA’s enhanced federal matching funds would give them a leg up should substantial additional resources become available through the American Jobs Plan and other potentially forthcoming federal legislation,” said Miller. Critical to success is consultation with community stakeholders to outline plans on how to expend the additional revenues in the most effective way possible to the greatest benefit of care recipients, their families, and the front-line staff who care for them.”

How Massachusetts Can Become a Living Laboratory for Aging

Reposted from The Boston Globe 

Let’s measure what’s going on in cities and towns so we can identify how a community’s aging circumstances change over time.

Historically speaking, population aging is new and presents a growing, largely untapped resource. Aging is something we all have in common, and we can leverage that collective reality to create moon-landing levels of advancements. We need a mindset that sees the older population as a solution and opportunity, not a burden or cause for panic.
One of the keys to seizing this opportunity is to measure what’s going on in our cities and towns and identify how a given community’s aging circumstances change over time. This goes far beyond simple head counts of how many are over 65. It requires granular information on a community-by-community level to really be effective.
My research team at the Gerontology Institute in the McCormack Graduate School of Policy and Global Studies at the University of Massachusetts Boston has been creating such tools for nearly a decade, with support from the Tufts Health Plan Foundation. We started in Massachusetts, collecting detailed data, most recently in 2018, about older adults living in every one of the Commonwealth’s 351 cities and towns, and we then produced similar information for Rhode Island, New Hampshire, and Connecticut. All this information can be found in our Healthy Aging Data Reports, available at healthyagingdatareports.org.

Continue reading

Transforming the Future of Aging

Bei Wu works toward improving health status through research and policy

If the world of academic gerontology had a rock star, it would be Bei Wu, MS ‘97, PhD ’00.

Recognized for her extensive research and pursued by top tier universities, Wu has become an international leader in the field since graduating from the University of Massachusetts Boston’s Department of Gerontology. Add the years in policy work before earning her doctorate and Wu chuckles that, having spent more than half of her life in the field of gerontology, she herself is now experiencing the aging process.

“I’ve become my own study subject,” Wu says.

Today, Wu is the Director of Global Health and Aging Research at the Rory Meyers College of Nursing, and Director for Research at the Hartford Institute for Geriatric Nursing at New York University (NYU) and the inaugural co-director of NYU’s Aging Incubator, a university-wide aging initiative.

Given her considerable success in gerontology, it’s fitting she credits her grandmother — with whom she was extremely close — for nudging her into the field. Born in Shanghai, Wu’s parents left her and her brother in their grandparents’ care when the two were young. After college, Wu accepted a research position with the Shanghai Commission on Aging only after prompting by her grandmother.

“At the time, very few people thought aging would be a challenging issue in the future,” Wu says.

But writing policy briefs and launching studies on intergenerational support with the United Nations Population Fund convinced Wu to pursue graduate studies. With no options available in China, she chose UMass Boston.

“UMass Boston has had a significant impact on my career,” Wu says. “The gerontology program has a critical mass of excellent faculty.” Continue reading

Gerontology Institute teams with CANALA for Project to Improve Economic Opportunities for Older People of Color

Caitlin CoyleAARP Foundation has awarded a grant to the Gerontology Institute at the University of Massachusetts Boston for a two-year project to increase access to economic opportunities for older people of color in the greater Boston area.

The $288,000 grant will fund the project that builds on the institute’s age-friendly work across the state, particularly the Age Friendly Boston Initiative, and its expertise in economic security issues in later life.

“We’re very excited because this project addresses economic security, a crucial need facing older adults,” said Caitlin Coyle, a research fellow at the institute and lead researcher on the project.

“It begins to answer a question we have encountered in a number of age-friendly community initiatives,” she said. “The question is, from a practical perspective, how do we build the capacity for authentic equity and inclusion?”

The project will be a joint effort by the institute’s Center for Social and Demographic Research on Aging and CANALA, a research collaboration of UMass Boston’s Institute for Asian American Studies, the Institute for New England Native American Studies, The Mauricio Gaston Institute for Latino Community Development and Public Policy, and the William Monroe Trotter Institute for the Study of Black Culture. Continue reading

Journal Special Edition Dedicated to COVID-19 and Older Adults: Lessons From the Pandemic

Edward Alan Miller

Editor-in-chief Edward Alan Miller

The impact of the COVID-19 pandemic on older adults around the world has been nothing short of breathtaking. Like any sudden crisis, it begs a few common questions: What actually happened and how did we respond? What lessons should we take from that experience? And, most importantly, what do we do now?

In a special double-issue of the Journal of Aging and Social Policy, dedicated to the COVID-19 pandemic crisis, leading gerontology researchers tackle those questions from a wide range of perspectives. The issue, Older Adults and COVID-19: Implications for Aging Policy and Practice, offers 28 scholarly articles available online free of charge.

“The COVID-19 pandemic has devastated populations and economies globally but older adults have been particularly hard hit, due both to direct exposure to the virus itself and to the adverse consequences of efforts taken to mitigate its effects,” said Edward Alan Miller, a University of Massachusetts Boston gerontology professor and JASP’s editor-in-chief. Continue reading

COAs and COVID-19: Managing New Issues on Communications, Food Security and Volunteerism

Bread in Bridgwater

Among many volunteers, a retired Bridgwater State University professor baked bread for distribution through his local COA.

The Gerontology Institute’s Center for Social and Demographic Research on Aging is publishing a series of blog posts to follow the ongoing impact of the coronavirus pandemic on Councils on Aging across Massachusetts.  We encourage COA readers to tell us about their experiences or responses to blog posts by using the reply box at the bottom of each post.

It’s a good thing Zoom and lots of other communications technology exists these days. But the old-fashioned telephone is also playing important role in the plans councils on aging are following to keep in touch with their elder residents.

In Bridgewater, the Fire Department is assisting to help identify phone numbers from census data for over 5,000 residents who are age 60 or older. Those numbers are being used to make wellness calls, but also develop a huge database for town’s emergency response protocol.

In Billerica, volunteers are making about 150 calls each week to check in with elder residents and evaluate their needs.

“During calls to check on patrons, they are so grateful to be remembered,” said Billerica COA Director Jean Bushnell. “It was remarkable to discover that care and concerned flowed both ways, they were actually worried about our staff.” Continue reading

COAs and COVID-19: How Councils Are Adapting to Serve Their Communities

The Gerontology Institute’s Center for Social and Demographic Research on Aging is launching a series of blog posts to follow the ongoing impact of the coronavirus pandemic on Councils on Aging across Massachusetts. Posts reporting on conversations with COA directors about how they manage the evolving COVID-19 challenge will appear on the Gerontology Institute Blog. We encourage COA readers to tell us about their experiences or responses to blog posts by using the reply box at the bottom of each post. 

 How do you deal with a problem as overwhelming as the coronavirus pandemic? David Stevens prefers to think about that answer in phases.

Stevens, the executive director of the Massachusetts Councils on Aging (MCOA), has been leading an effort to provide support, coordinate resources and lead communication with his 350 member-COAs since the COVID-19 crisis gripped the state. Continue reading

Boston’s Senior Civic Academy Helps Older Adults Understand and Engage Local Government

The Boston Senior Civic Academy was created in 2018 by city officials, with the assistance of the Gerontology Institute’s Center for Social and Demographic Research on Aging. Its curriculum is designed to help older adults better understand how local government works and develop skills to advocate for issues important to them. Institute research fellow Caitlin Coyle has played a central role in the development of the academy. She recently spoke with the Gerontology Institute Blog about the program.

Q: How did Boston’s Senior Civic Academy come about?

Caitlin Coyle: The program was developed as a part of the Age Friendly Boston Initiative. As part of that initiative, we did a comprehensive needs assessment for the city of Boston several years ago. We found seniors felt that local policy makers and advocates did not necessarily take into consideration their experiences, needs and preferences. In response, this program was created as an opportunity for seniors to become more involved and to empower them as self-advocates at the policy level. It also created an opportunity for public education about how policy and decisions are made at the local, state and federal levels. Continue reading