The need for long-term care (LTC) represents a "new social risk," one that overlaps with and complements systems of care that pre-date such programs, complicating LTC program design. This commentary ...expands on Ikegami's discussion of how these structural factors must be accommodated, as well as historical and cultural factors that influence public expectations of such a program. The commentary specifically focuses on the role of cash payments, caregiver benefits, and the sometimes indistinct line between LTC and health systems. The experiences of countries operating LTC program in a wide range of contexts can illuminate common challenges, as well as some potential solutions to these vexing design and operational issues.
Rising rates of mental illness in nursing homes (NHs) led Congress to pass the 1987 Pre-Admission Screening and Resident Review (PASRR) mandate, aimed at limiting inappropriate institutionalization ...of people with mental illness (MI) and ensuring appropriate service of NH residents with MI. The law’s flexibility results in significant cross-state variations. This study explores Massachusetts’ experiences with PASRR implementation, using semi-structured interviews (N=8) with key informants representing major stakeholders. Thematic Content Analysis was used for analysis.
Four themes emerged as follows: 1) PASRR screens MI, insufficient in ensuring services, 2) NHs face challenges implementing PASRR, 3) inadequate community-based services increase pressure on NHs, and 4) reactions to PASRR revisions were mixed. Participants agreed that PASRR’s first aim was met—avoiding inappropriate institutionalization—but not the second—ensuring appropriate services, and highlighted the limited community alternatives for serving people with MI. More research is needed to understand state variations in PASRR implementation.
Despite the widely-acknowledged potential of housing with services for improving the lives of low-income older adults, ensuring their financial sustainability has been challenging. This study aimed ...to address this issue, drawing on 31 key informant interviews and three focus groups with payers, housing providers, and community partners involved in the Boston-area Right Care, Right Place, Right Time Program, which enrolled about 400 older adults. Transcripts were qualitatively analyzed using thematic coding. Participants agreed on the program’s value, but there was little consensus on mechanisms for securing ongoing funding. The broadly distributed responsibility for individuals in housing sites, which involves health insurers, hospitals, and community service providers, provides little incentive for investment by these entities. Findings suggest that governmental mechanisms, probably at the federal level, are needed to channel funding toward these supportive services. Without such reliable funding sources, replication of supportive housing models for low-income older people will prove difficult.
The work of caregiving can make it difficult to sustain employment. This study aimed to clarify what family caregivers themselves think is important in remaining employed, as part of work mandated ...under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2018. Data came from a Request for Information promulgated by the Administration for Community Living, resulting in 1147 family caregiver responses, and 12 focus groups. Findings support many goals identified by caregiver-advocates, such as expanding the Family and Medical Leave Act, and access to paid time off and sick leave; caregivers also value flexible work arrangements. However, the study further revealed a need for supportive work environments that protect caregivers against workplace discrimination and negative attitudes held by both managers and colleagues, and thus for employer education about the caregiving experience as well as caregivers’ needs for workplace supports and benefits, and possibly anti-discrimination legislation.
Context: An aging population leads to a growing demand for long-term services and supports (LTSS). In 2002, France introduced universal, income-adjusted, public long-term care coverage for adults 60 ...and older, whereas the United States funds means-tested benefits only. Both countries have private long-term care insurance (LTCI) markets: American policies create alternatives to out-of-pocket spending and protect purchasers from relying on Medicaid. Sales, however, have stagnated, and the market's viability is uncertain. In France, private LTCI supplements public coverage, and sales are growing, although its potential to alleviate the long-term care financing problem is unclear. We explore whether France's very different approach to structuring public and private financing for long-term care could inform the United States' long-term care financing reform efforts. Methods: We consulted insurance experts and conducted a detailed review of public reports, academic studies, and other documents to understand the public and private LTCI systems in France, their advantages and disadvantages, and the factors affecting their development. Findings: France provides universal public coverage for paid assistance with functional dependency for people 60 and older. Benefits are steeply income adjusted and amounts are low. Nevertheless, expenditures have exceeded projections, burdening local governments. Private supplemental insurance covers 11% of French, mostly middle-income adults (versus 3% of Americans 18 and older). Whether policyholders will maintain employer-sponsored coverage after retirement is not known. The government's interest in pursuing an explicit public/private partnership has waned under President François Hollande, a centrist socialist, in contrast to the previous center-right leader, President Nicolas Sarkozy, thereby reducing the prospects of a coordinated public/private strategy. Conclusions: American private insurers are showing increasing interest in long-term care financing approaches that combine public and private elements. The French example shows how a simple, cheap, cash-based product can gain traction among middle-income individuals when offered by employers and combined with a steeply income-adjusted universal public program. The adequacy of such coverage, however, is a concern.
As the population ages and supportive services are increasingly delivered in home- and community-based settings, greater demands are placed on family caregivers. This essay introducing the special ...issue of the Journal of Aging and Social Policy discusses signs of progress on policies to ease the burden on family caregivers. It introduces a series of articles that reflect the growing body of research on caregiver-related policy actions. These actions range from expanding access to paid family leave and payment for providing care, to ensuring access to better data about family caregivers and improving the post- hospital discharge experiences of rural and underserved caregivers. It also explores a major conundrum around caregiving policy - why progress on family caregiving policy has been so slow, despite its clear importance to the health and welfare of those who receive supports, as well as to those providing supports. In addition, the essay discusses developments, such as Biden administration actions and the RAISE Family Caregiver Advisory Council, indicating that the political dynamic around caregiving has changed, concluding that this is a uniquely hopeful time for family caregiver-related policy.
Little research has explored the relationship between consumer satisfaction and quality in nursing homes (NHs) beyond the few states mandating satisfaction surveys. We examine this relationship ...through data from 1,765 NHs in the 50 states and District of Columbia using My InnerView resident or family satisfaction instruments in 2013 and 2014, merged with Certification and Survey Provider Enhanced Reporting, LTCfocus, and NH Compare (NHC) data. Family and resident satisfaction correlated modestly; both correlated weakly and negatively with any quality-of-care (QoC) and any quality-of-life deficiencies and positively with NHC five-star ratings; this latter positive association persisted after covariate adjustment; the negative relationship between QoC deficiencies and family satisfaction also remained. Overall, models explained relatively small proportions of satisfaction variance; correlates of satisfaction varied between residents and families. Findings suggest that satisfaction is a unique dimension of quality and that resident and family satisfaction represent different constructs.
Abstract
The RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018) has been tasked to support the Secretary ...of Health and Human Services in developing a national family caregiving strategy. The Council began by (in 2021) identifying five key Goals critical to supporting family caregivers, which were reported to Congress in the Council’s Initial Report; the next step (in 2022) was to identify how these Goals are to be operationalized via specific actions, as well as the stakeholders that needed to be involved. This symposium discusses Goal 4, which states that “Family caregivers’ lifetime financial and employment security is protected and enhanced,” a goal incorporating diverse components, including federal legislation (expanding FMLA, for example), enhancing workplace security for working caregivers, and ways to pay family caregivers for providing supportive services. The first paper, by Salom Teshale, PhD, will provide an overview of the Council’s work and the strategies that have been chosen to support the overall national strategy. The second paper, by Eileen J. Tell, MPH, will describe strategies to improve the ability of caregivers to remain and thrive in the workplace. Pamela Nadash, PhD, will report on the research that identified the expansion of self-directed programs to incorporate payment for family caregivers as key, and the fourth paper by Rani Snyder will conclude by identifying the research needed to move these efforts forward. Greg Link of the Administration for Community Living will act as discussant.
Abstract
The RAISE Family Caregiving Advisory Council, created under the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (2018) has been tasked to support the Secretary ...of Health and Human Services in developing a national family caregiving strategy. This presentation reports on research commissioned to support the activities of the Council, which aimed to engage a broad range of stakeholders in identifying concrete strategies to carry out the Goals identified as critical to supporting family caregivers. One priority was to engage with organizations representing the diversity of family caregivers, including groups working with Blacks, Indigenous people, Asian-Americans, Pacific Islanders, and other people of color, along with groups such as faith organizations that work with under-resourced communities. Respondents had much to say regarding mechanisms for ensuring access to services and supports among diverse family caregivers, most notably identifying support for “community ambassadors” as key, as well as targeted awareness campaigns.
Abstract
Although the primary goal of self-directed programs providing long term services and supports (LTSS) is to maximize choice and control for service recipients, such programs may also benefit ...family caregivers by compensating them for providing supportive services. This study draws on qualitative data from research supporting the RAISE Family Caregiver Advisory Council, finding that family caregivers themselves see the expansion of self-directed programs as a policy priority due to their need for financial security. The request for compensation was the strongest finding, with respondents highlighting the incompatibility of work with caregiving and their inability to rely on the existing paid workforce due to supply and quality issues; the consequences of this loss of earned income were reported as severe. Ultimately, respondents saw payment for providing care as an issue of fairness. This evidence supports the policy case for expanding access to self-directed programs that permit the employment of family caregivers.
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