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

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.”

Gender and Money in Later Life: How Older Women Face Greater Economic Insecurity than Men

Most older women spent their working lives behind the economic curve. They were typically paid less than men when at work and more likely to provide family care that reduced employment opportunities.

Their economic situation doesn’t improve in later life. Lower Social Security and pension benefits, the result of working and earning less over decades, and the fact that women are more likely to live longer than men just extend that gender disadvantage into older age and often make it worse.

A new report by the Gerontology Institute at the University of Massachusetts Boston uses the Elder Index™to demonstrate the depth and scope of economic disadvantage experienced by older women living alone across the United States. It is documented in every state in the nation and only increases with age.

“Life-long patterns of inequality in work experiences and wealth accumulation are behind a substantial gender disparity in retirement economic security,” said Jan Mutchler, the report’s lead author and a professor of gerontology at UMass Boston. “The consequences of that disparity affect so many older women who routinely face hard choices about basic expenses they simply can’t afford.” 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.

Valued Partnership

Internship benefits housing provider and doctoral student while supporting older adult residents

When a Boston-based affordable housing developer wanted to survey their residents to better support their health-related needs, they paused. What did they know about approaching older adults to inquire about their personal healthcare?

“We’re developers and project managers, not social workers or healthcare providers,” says Amarillys Rodriguez, Development and Policy Project Manager for the Planning Office for Urban Affairs (POUA). “We needed to bridge this gap and have the kind of expertise on hand to help us better understand our residents.”

Elisabeth Stam, gerontology doctoral student

POUA reached out to the Gerontology Institute at UMass Boston and the two organizations created a graduate assistantship. The opportunity allowed one doctoral student in UMass Boston’s distinguished Gerontology program to help POUA move forward on its Health & Housing Initiative while gaining useful work experience.

A social justice ministry of the Archdiocese of Boston, POUA has more than 3,000 housing units located in Eastern Massachusetts. About one-half of these apartments are homes for older adults. POUA wanted to learn about these residents’ health needs to better serve them by providing support such as preventive care. To accomplish this, POUA decided to develop a voluntary, confidential survey to collect demographic information and information about health conditions, insurance coverage and healthcare provider relationships.

“If we gather this information, we’ll be able to identify any patterns or clusters of particular issues to pay attention to and create on-site, health-targeted resident services,” says Rodriguez.

Elisabeth Stam, a first-year doctoral student studying Gerontology at UMass Boston, began her internship with POUA in the fall of 2020 continuing through the Spring 2021 semester. Among her responsibilities was helping to develop and structure the survey to describe respondents’ health needs. Having someone with an understanding of gerontology and knew how to word questions so residents felt comfortable to participate and respond, was key to a successful survey, notes Rodriguez. Continue reading

Engaging People with Dementia

  • Management of Aging Services grad awarded $500K grant to support project begun at UMass Boston

A modest decline of memory loss is fairly common in aging. But, Debby Dodds MAS ’14 says she could “see the disenfranchisement of early-stage memory loss” in her mother and her friends.

Debby Dodds, MAS

Relocating her mother to an assisted living community near her own family in California, Dodds was dismayed to find that the facility did not have access to wi-fi for its residents. Dodds — who works in technology — found this unfathomable.

“There was this whole population we weren’t connecting with,” she says.

Wanting to use her knowledge of technology to support older adults who, like her mother, were dealing with memory loss, Dodds decided to go back to school to understand the psycho-social aspects of the aging population. She enrolled in UMass Boston’s Management of Aging Services program — offered only online — to study gerontology and explore the field’s current research while pursuing her interest to use technology to support this population.

Among her first projects was using software downloaded to a tablet to record her voice over photos to create a story and share family memories with her mother. Soon her sibling and the grandkids were doing the same. The bonus was caregivers could play the stories for her mom to stimulate fond memories when family wasn’t there. The story engagements produced warm and happy feelings for her mother, personalized engagements with her caregivers and created enjoyable interactions for Dodds and her family members.

“Reminiscing helps us all stay connected to our past successes which can keep us happy,” says Dodds. “With memory loss, it becomes more difficult to recall our life’s joyful events. That is where technology comes in. With personalized and content-driven tablet engagement, people with dementia can stay in tune with the best parts of their personhood.”

Dodds expanded this concept for her capstone project. She created a workshop, TouchTEAM (Tablet Engaged Active Minds), which used digital technology to engage individuals with memory loss and allow their caregivers to connect with them. She launched the free program through the Santa Cruz Public library. The library provided iPads which she loaded with music, games, photographs, puzzles, and videos and volunteers worked with individuals with dementia and their families to offer new ways for them to connect. The workshops were met with considerable success.

Client engaging with CTC app

“The experience I received through the gerontology program was powerful,” says Dodds. “I really cherished my time there. The professors were knowledgeable, patient and guiding. I think one of the most valuable things was being in class with people from all over the U.S. Each state manages its aging population differently. I hadn’t anticipated how valuable that aspect would be. I’ve kept in contact with many of my colleagues and value their perspectives about our work.”

Dodds says she was offered every opportunity to tailor assignments to her interest in using technology to work with people with dementia. Today, she’s a partner in Generation Connect and helping formal caregivers across the U.S. use mobile devices with personalized content to enhance the quality of life for their clients.

Currently Dodds and her colleagues are pilot testing an app based on her capstone project. Awarded a grant of nearly $500,000 from the National Institutes of Health, National Institute on Aging, and Small Business Innovation Research program, the team is piloting the Care Team Connect (CTC) app with a variety of Visiting Angels and Right at Home, home-care agency franchises across the country.

During the pilot, managed tablets with the CTC app are customized to help home care providers collaborate with families and personalize engagement with their clients. Together they develop music playlists to enhance mood, and build a collection of personalized family photos and videos to help caregivers connect more meaningfully with clients, much like family would if they were present.

“The tailored tablet allows us to build trust between the caregiver and the client that is driven by the content family provides,” says Dodds. “There’s such a wide variety of personalized information available. Things such as favorite songs, family photos, or culturally specific events that allow us to tap into who that person is. We had a client who was Navajo, he was moved to be nearer his eldest daughter and lost touch with his culture. We provided his caregivers with a tablet that had videos of Pow Wows and news in his native language. He was thrilled to reconnect with his personhood in this way.”

Dodds says this type of technology can help reduce turnover related to the care of clients with dementia, improve the ability to age in place, and provide support for non-clinical home care services as reimbursable through supplemental benefits.

She knows firsthand how valuable this tool is for the caregiver and the patient.

“My mom lived with memory loss for ten years,” she says. “The last year of her life she lived with my family and we became user number one of the CTC app. I think most people don’t consider having their parents with dementia live with them during the last year of their life, but at that very sensitive time in our lives, it went really well. Investing in the MAS degree helped shaped my life personally and professionally, and I am grateful.”

 

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.”

100th Dissertation Celebrated by UMass Boston’s Gerontology Program

One in Five Gerontology PhDs are earned at UMass Boston

Krystal Kittle, PhD

The Gerontology program at UMass Boston (UMB) has recognized a significant milestone: its 100th dissertation defense. With the COVID-19 pandemic still requiring most academic work conducted remotely, Krystal Kittle defended her dissertation over Zoom. Her thesis advisor, Professor Kathrin Boerner, attended the online event as well other committee members, faculty, fellow students, and staff to show their support and celebrate her accomplishment.

Established in 1989, the UMass Boston Department of Gerontology is one of the world’s oldest and most recognized programs studying aging across the lifespan. Globally renowned for its multi-disciplinary curriculum, exemplary research and accomplished faculty, one in five gerontologists with a doctorate earned their degree at UMass Boston. The program is also home to the Journal on Aging & Social Policy and Research on Aging, both peer-reviewed journals edited, respectively, by UMass Boston faculty Edward Alan Miller, PhD, professor and doctoral program director for the department and Jeffrey Burr, PhD, professor and chair of the department.

“Doctoral education takes a commitment to the field and a willingness to sacrifice,” says Burr. “Our alumni exemplify dedication, perseverance, and passion for research that makes a difference in society. As we mark this milestone, we celebrate the hard work of our graduates, and the impact they make in the world.”

Jeffrey Burr, PhD

UMass Boston gerontology alumni have been major contributors to the strong international reputation of the program. They live and work across the globe, including in Canada, China, Germany, Israel, South Korea, Singapore, Switzerland, Saudi Arabia, Taiwan, Thailand, and across the U.S. Alumni work in a variety of healthcare settings, for local, state, and federal agencies, not-for-profits that address aging issues and as faculty, researchers and administrators in universities.

“Between the first dissertation defense and the 100th, our students have produced many innovative, cutting-edge research projects and publications in scholarly journals,” says Miller. “They add significantly to the knowledge base on aging, while informing practices and policies that impact older adults, their families and communities.”

Kittle, from California, was the first person in her family to go to college and the only one to earn an advanced degree. She chose to attend UMass Boston’s gerontology program because of its high graduation rate which, she reasoned, meant a supportive and patient faculty. Kittle said she was impressed with the collegiality among the program’s tightknit community of students and faculty.

“The endurance required for a doctorate is considerable,” she says. “The UMB faculty saw something in me that inspired me to keep going.”

Kittle’s dissertation centered on the healthcare of older LGBT adults and “The Role of Minority Stress, Sociodemographic Characteristics and Social Resources.”

“I was a little nervous, but more excited to share what I had worked so diligently on for so long,” she says.

Edward Alan Miller

Edward A. Miller, PhD

Kittle joins an engaged and respected group of professionals. In a recent survey, nearly three-quarters of the program’s 100 doctorates shared how their degree had shaped and supported their career goals.

“My multidisciplinary training from UMB prepared me to be an effective collaborator—one that weaves together the expertise and perspective of colleagues towards a shared purpose,” noted one alum. “[My training] helped me develop extensive knowledge and hands-on skills in conducting qualitative and quantitative research studies that makes a real impact on the care and life of vulnerable and frail elders,” wrote another alum.

Identifying their current professional roles, alumni reflect the wide range of career opportunities available to gerontologists. These prospects are anticipated to increase as older populations are expected to outnumber younger populations in most countries. According to the U.S. Census Bureau, one in every five residents will be retirement age by 2030. By 2034, there will be 77 million Americans 65 years and older and 76.5 million Americans under the age of 18.

“One highlight of faculty life is maintaining relationships with our graduates as they progress in their careers,” says Burr. “We see them at conferences, collaborate on research and welcome their return to campus as guest lecturers.”

After she successfully defended her thesis, Kittle was told she had earned the program’s 100th doctorate. She said it gave her a strong “sense of pride for the program. It felt as if I had come full circle. It was a testament to the commitment that the faculty makes for their students.”

In April, Kittle begins work as a postdoc research fellow in the Social and Behavioral Health Program at the University of Nevada, Las Vegas School of Public Health. The focus of her work is Alzheimer’s disease and related dementias among LGBTQ middle-aged and older adults.

Elder Index at Work: Helping Boston’s Age-Friendly Plan Take Aim at Economic Insecurity

This article is one in a series of stories about how people across the country are using the Elder Index to understand the true cost of living for older adults and its economic implications. If you know someone who would like to receive information about these stories, send us a note at gerontologyinstitute@umb.edu.

Go to any city across America and you will find older adults struggling to make ends meet. Go to Boston and you will see some of the most serious elder economic insecurity problems in the nation.

This is not news at Boston’s Age Strong Commission, which first launched an ambitious age-friendly plan in 2017. The commission is now developing a Step 2 blueprint with a focus on the problem of economic security among older residents. A critical tool for that job: The Elder Index. Continue reading