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.

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.

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.”

Nursing Home Reimbursement: A case study

The current financing structure of Pennsylvania nursing homes is not sustainable

Nursing homes play a critical role delivering long-term services and supports (LTSS) to older adults and individuals under the age of 65 with disabilities. Despite this, these facilities face serious threats to their financial viability. A new report documents the increasingly important role nursing homes play in Pennsylvania, the key demand and supply factors affecting nursing home performance, and highlight implications for the financial viability of nursing homes going forward.

Edward Alan Miller

Editor-in-chief Edward A. Miller

Using data from a variety of sources, the researchers demonstrate that the demand for nursing home care is expected to increase, but the reimbursement level from Medicaid — the growing source of payment for nursing home residents — is causing a financial strain on these institutions. The report, “The Case for Funding: What is Happening to Pennsylvania’s Nursing Homes,” was written by researchers with the LeadingAge LTSS Center @ UMass Boston and funded by The Jewish Healthcare Foundation.

Data between 2010 and 2018 indicate that nursing homes are serving lower income individuals with more challenging diagnoses, including more severe cognitive impairment and psychiatric illness, as length of stay and occupancy has declined. Coupled with Medicaid as a payment source for increasing numbers of residents, the researchers expect to see more nursing homes face financial challenges in the coming years.

“The current financing structure supporting nursing home care in Pennsylvania is not sustainable,” says Edward Alan Miller, PhD, one of the report’s authors and Professor of Gerontology at UMass Boston. “Unless the reimbursement rates paid by the Medicaid program are brought more in alignment with the costs of providing high quality care in a safe manner, providers will face increasing challenges caring for Pennsylvania’s most vulnerable residents.”

Data on professional and support staff in nursing homes also indicate a concerning trend:

  • Even as patients are presenting with more challenging diagnoses, overall staff hours among direct care workers have remained relatively unchanged over the last ten years and RN hours have declined slightly.
  • Compensation for direct care workers has remained relatively flat, increasing by only 1.9% per year from 2012 to 2019. When adjusted for the medical consumer price index, real wages have declined an average of .78% annually during the time examined.
  • While certain individual quality metrics have improved — such as declines in the numbers of bed sores — overall aggregated quality scores have not.Marc Cohen, PhD

“The growing gap between what facilities need, as reflected in charges, and the Medicaid reimbursement rate has come at a time when nursing homes are being asked to care for an increasingly complex and frail mix of residents,” says Marc Cohen, PhD, one of the report’s authors and Co-Director of the LeadingAge LTSS Center @ UMass Boston. “The result has been increased cost shifting to individuals and families who must pay for care privately or take on additional caregiving responsibilities. Nursing home services represent a critical component in Pennsylvania’s continuum of care. Our study demonstrates that more needs to be done to support them.”