The State of Family Caregiving Policy.

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.

Promoting Sustainability in Housing with Services: Insights From the Right Care, Right Place, Right Time Program.

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.

Supporting Diverse Family Caregivers: Key Stakeholder Perspectives.

This study aimed to understand the perspectives of key stakeholders regarding strategies for better supporting culturally and ethnically diverse family caregivers, aiming to incorporate them into the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Advisory Council's proposed National Strategy. The Strategy, published in 2022, identified priority actions to support the growing population of people providing unpaid care to people of all ages with disabilities, with a goal of improving the health and well-being of both the family caregiver and the person receiving support. Researchers conducted extensive outreach to purposively diverse stakeholder organizations, using six stakeholder strategy sessions with representatives from 42 groups in December 2020 to identify preliminary themes. During July-October 2021, 17 key informant interviews and 16 stakeholder listening sessions were held, involving 103 different organizations. Qualitative data analysis using an inductive approach was used to identify key themes. A significant issue for diverse caregivers is widespread lack of self-identification as caregivers, which is tied to a lack of awareness of potentially helpful services and supports; culturally appropriate outreach is critical to ensure access to services, as well as access to centralized resources and funding for community- and faith-based organizations. A community health worker model was recommended. Tailored activities, involving trusted community- and faith-based groups, as well as investments in caregiver- and culturally-specific supports, are critical for reaching the diverse family caregivers who most need supports. Raising awareness of caregiving among and taking advantage of the expertise of professionals working with diverse communities is also crucial.

What do Family Caregivers Want? Payment for Providing Care.

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.

Admission and Care of Individuals with Mental Illness in Massachusetts Nursing Homes: An Exploratory Study.

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.

The effect of the right care, right place, right time (R3) initiative on Medicare health service use among older affordable housing residents.

OBJECTIVE: To determine the effect of an affordable housing-based supportive services intervention, which partnered with health and community service providers, on Medicare health service use among residents. DATA SOURCES: Analyses used aggregated fee-for-service Medicare claims data from 2017 to 2020 for beneficiaries living in 34 buildings in eastern Massachusetts. STUDY DESIGN: Using a quasi-experimental design, a "difference-in-differences" framework was employed to isolate changes in outcomes, focusing on changes in pre- and post-intervention health service use across two stages of the intervention. Phase 1 encompassed the initial implementation period, and Phase 2 introduced a strategy to target residents at high risk of poor health outcomes. Key health service outcomes included hospitalizations, 30-day hospital readmission, and emergency department use. DATA COLLECTION: Medicare claims data for 10,412 individuals were obtained from a Quality Improvement Organization and aggregated at the building level. PRINCIPAL FINDINGS: Analyses for Phase 1 found that hospital admission rates, emergency department admissions and payments, and hospital readmission rates grew more slowly for intervention sites than comparison sites. These findings were strengthened after the introduction of risk-targeting in Phase 2. Compared to selected control buildings, residents in intervention buildings experienced significantly lower rates of increases in inpatient hospitalization rates (-16% vs. +6%), hospital admission days (-25% vs. +29%), average hospital days (-12% vs. +14%), hospital admission payments (-22% vs. +33%), and 30-day hospital readmission rates (-22% vs. +54%). When accounting for the older age of the intervention residents, the size of the decline recorded in emergency department admissions was 6.7% greater for the intervention sites than the decline in comparison sites. CONCLUSIONS: A wellness-focused supportive services intervention was effective in reducing select health service use. The introduction of risk-targeting further strengthened this effect. Age-friendly health systems would benefit from enhanced partnerships with affordable housing sites to improve care and reduce service use for older residents.

Policies to Sustain Employment Among Family Caregivers: The Family Caregiver Perspective.

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.

Engaged Scholarship in Gerontology: Frank Caro's Lifetime Contributions.

Dr. Francis G. Caro, retired Professor of Gerontology at the University of Massachusetts Boston, Co-editor (1996-2005) and Editor-in-Chief (2005-2016) of the Journal of Aging and Social Policy, passed away on October 2, 2020. Caro dedicated most of his nearly 60 years of academic and professional activity to gerontology and services for older adults. This article offers a review of his contributions in four central areas of gerontology: the strengthening of long-term services and supports through integration of home care services with other domains, the expansion of how productive aging was socially understood and economically valued, the importance of rigorous program evaluation and ongoing methodological innovation, and the significance of age-friendly cities and communities, both in the United States and internationally. This review of Caro's work highlights his integral role in helping to place several topics on the gerontological agenda that are still relevant today, establishing him as an important contributor to the field. He also exemplified productive aging and how scholarship can be theoretically rigorous but also applied in meaningful ways to make a difference in individual lives and within communities.

The impact of health-related supports in senior housing on ambulance transfers and visits to emergency departments: The Right Care, Right Place, Right Time Project.

OBJECTIVE: To test the impact of placing a wellness team (nurse and social worker) in senior housing on ambulance transfers and visits to emergency departments over 18 months. DATA SOURCES/STUDY SETTING: Intervention sites included seven Boston-area buildings, with five buildings at comparable settings acting as controls. Data derive from building-level ambulance data from emergency responders; building-level Medicare claims data on emergency department utilization; and individual-level baseline assessment data from participants in the intervention (n = 353) and control (n = 208) sites. STUDY DESIGN: We used a pre/postdifference in difference quasi-experimental design applying several analytic methods. The preintervention period was January 2016-March 2017, while the intervention period was July 2017-December 2018. DATA COLLECTION/EXTRACTION METHODS: Emergency responders provided aggregate transfer data on a daily basis for intervention and control buildings; the Quality Improvement Organization provided quarterly aggregate data on emergency department visit rates; and assessment data came from a modified Vitalize 360 assessment and coaching tool. PRINCIPAL FINDINGS: The study found an 18.2% statistically significant decline in ambulance transfers in intervention buildings, with greater declines in buildings that had fewer services available at baseline, compared to other intervention sites. Analysis of Medicare claims data, adjusted for the proportion of residents over 75 per building, found fewer visits to emergency departments in intervention buildings. CONCLUSIONS: Health-related supports in senior housing sites can be effective in reducing emergency transfers and visits to emergency departments.

Thrust Into the Spotlight: COVID-19 Focuses Media Attention on Nursing Homes.

OBJECTIVE: This study sheds light on the agenda-setting role of the media during the COVID-19 crisis by examining trends in nursing home (NH) coverage in 4 leading national newspapers-The New York Times, Washington Post, USA Today, and Los Angeles Times. METHOD: Keyword searches of the Nexis Uni database identified 2,039 NH-related articles published from September 2018 to June 2020. Trends in the frequency of NH coverage and its tone (negative) and prominence (average words, daily article count, opinion piece) were examined. RESULTS: Findings indicate a dramatic rise in the number of NH articles published in the months following the first COVID-19 case, far exceeding previous levels. NH coverage became considerably more prominent, as the average number of words and daily articles on NHs increased. The proportion of negative articles largely remained consistent, though volume rose dramatically. Weekly analysis revealed acceleration in observed trends within the post-COVID-19 period itself. These trends, visible in all papers, were especially dramatic in The New York Times. DISCUSSION: Overall, findings reveal marked growth in the frequency and number of prominent and negative NH articles during the COVID-19 crisis. The increased volume of coverage has implications for the relative saliency of NHs to other issues during the pandemic. The increased prominence of coverage has implications for the perceived importance of addressing pre-existing deficits and the devastating consequences of the pandemic for NHs.

Stepping into the Breach of Federal Inaction: Reforming the Financing of Long-Term Services and Supports in the Post-CLASS Era.

The growing need for long-term services and supports (LTSS) poses significant challenges to both individuals and government. This article documents the continuing failure to tackle this problem at the national level-a failure that was most recently seen in the fallout from the Affordable Care Act (ACA), which included the single piece of national legislation ever enacted to comprehensively address LTSS costs: the Community Living Assistance Services and Supports (CLASS) Act. The CLASS Act was passed as part of the ACA (Title 8) but was repealed in 2013. Following its demise, policy experts and some Democrats have made additional proposals for addressing the LTSS financing crisis. Moreover, significant government action is taking place at the state level, both to relieve financial and emotional burdens on LTSS recipients and their families and to ease pressure on state Medicaid budgets. Lessons from these initiatives could serve as opportunities for learning how to overcome roadblocks to successful policy development, adoption, and implementation across states and for traversing the policy and political tradeoffs should a policy window once again open for addressing the problem of LTSS financing nationally.

The Evolution of Long-term Care Programs Comment on "Financing Long-term Care: Lessons From Japan".

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.

The Relationship Between Quality of Care, Physical Therapy, and Occupational Therapy Staffing Levels in Nursing Homes in 4 Years' Follow-up.

OBJECTIVES: To understand physical therapy (PT) and occupational therapy (OT) staffing levels in nursing homes and to examine their relationship with quality of care. DESIGN: Observational study that used 4 secondary data sources to perform facility-level panel data analyses. SETTING AND PARTICIPANTS: For-profit and nonprofit US nursing homes participating in Medicare and/or Medicaid. The final analytic sample includes 42,374 observations from 12,352 nursing homes, 2013-2016. METHODS: Three Centers for Medicare & Medicaid Services quality measures, including activities of daily living (ADL), falls, and 5-star quality, were used to examine the association between PT/OT staffing and quality. Bivariate analyses between PT/OT staffing and facility-level characteristics were run to describe the staffing disciplines in this setting. F tests and t tests were used to test for significance of each relationship. The sample was stratified into quintiles to determine if nursing homes with higher PT/OT staffing levels were linked to higher quality. Significance was determined using F tests and chi-squared tests. Finally, multilevel random effects regressions were performed to examine the relationship between PT/OT staffing and quality. RESULTS: Bivariate analyses indicate that PT/OT staffing levels vary across several nursing home characteristics. After stratifying the sample based on staffing levels, this study found that nursing homes that differ in staffing levels also differ in their quality performance. The random effects regression models also estimated a significant, positive relationship between higher staffing levels and quality, evidenced by each quality domain. CONCLUSIONS/IMPLICATIONS: The findings demonstrate that PT/OT staffing may be important components in improving long-stay resident outcomes and overall quality. Evidence was found in support of utilizing a combination of both PT/OT staff and nursing staff to improve resident outcomes, and expanding coverage of these staff/services under Medicaid. Further research should evaluate effective multidisciplinary approaches to care to lend further support to policy makers and progress quality improvement strategies.

The Dementia Care Coordination Program: Engaging Health Systems in Caregiver Supports.

This paper reports on a process evaluation using mixed methods to assess a Dementia Care Coordination Program, which is distinctive in using the medical system, rather than direct outreach, to identify and refer families to supports provided by an Alzheimer's Association chapter via dedicated care consultants. One care consultant received referrals from individual physicians, while the other, employed by a health plan, received referrals from health plan case managers. Through key informant interviews, focus groups, and physician and caregiver surveys, we identified key issues, finding high rates of stakeholder satisfaction, but some practical issues around information sharing and data tracking. We further found the health plan model of collaboration to offer significant potential for the systematic and early detection of potential clients, provided investments in minor systems change. The Dementia Care Coordination Program, therefore, represents a minimalist model of dementia-specific support, which could be further supplemented via more focused outreach and education.

A National-Level Analysis of the Relationship Between Nursing Home Satisfaction and Quality.

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.

The state of aging policy and politics in the Trump era.

The surprise election of President Donald J. Trump to the presidency of the United States marks a singular turning point in the American republic-not only because of his idiosyncratic approach to the office, but also because the Republican Party now holds the presidency and both houses of Congress, presenting a historic opportunity for change. The role of older Americans has been critical in both shaping and reacting to this political moment. Their political orientations and behaviors have shaped it through their electoral support for Republican candidates, but they also stand as highly invested stakeholders in the policy decisions made by the very officials they elected and as beneficiaries of the programs that Republicans have targeted. This article draws on the content of this issue to explore the ways in which Trump administration policies are likely to significantly undermine the social safety net for near-elderly and older Americans with respect to long-term care, housing, health care, and retirement. It also draws on issue content to speculate on the ways that these policy changes might shape politics and political behavior. We conclude that the response of older voters in the 2018 midterm elections to efforts by the Trump administration and its Republican allies in Congress to draw back on the federal government's commitment to programs and policies affecting them will shape the direction of aging policy and politics in the years to come.

A series of unfortunate events: implications of Republican efforts to repeal and replace the Affordable Care Act For older adults.

This paper discusses Republican efforts to repeal the 2010 Patient Protection and Affordable Care Act (ACA) over President Trump's first year in office (2017) and their impact on near-elderly Americans (50-64 years old). We describe how the ACA's provisions for strengthening health care coverage were particularly advantageous for near-elderly Americans: The law shored up employer-sponsored health care, expanded Medicaid, and-most important-created conditions for a strong individual health insurance market. We then describe Republican efforts to undermine the ACA in the years immediately following its passage, followed by detailed discussion of Republican proposals to repeal and replace the ACA during 2017. We conclude by discussing factors informing the fate of Republican legislation in this area, the potential consequences of the legislation that ultimately passed, and the prospects for future attempts to repeal and replace the ACA through the legislative process.

Undermining the ACA through the executive branch and federalism: what the Trump administration's approach to health reform means for older Americans.

The ACA has survived multiple existential threats in the legislative and judicial branches, including dozens of congressional attempts at repeal and two major Supreme Court cases. Even as it seems that the ACA is here to stay, what the law accomplishes is far from settled. The Trump administration is using executive powers to weaken the law, in many cases using the same powers that President Obama used to strengthen the effects of the reform. States have responded by seeking flexibility to pursue reforms, such as work requirements, that could not pass Congress and that were not allowed by the Obama administration. There is no indication that the ACA is imploding as President Trump has predicted and seems to desire, although these changes have a real and substantial impact on the lives of many Americans, including the near-elderly in unique ways.

The German Long-Term Care Insurance Program: Evolution and Recent Developments.

BACKGROUND AND OBJECTIVES: Since 1995, Germany has operated one of the longest-running public programs providing universal support for the cost of long term services and supports (LTSS). Its self-funding, social insurance approach provides basic supports to nearly all Germans. We discuss its design and development, including recent reforms expanding the program and ensuring its ongoing sustainability. RESEARCH DESIGN AND METHODS: The study reviews legislative and programmatic changes, using program data, as well as legislative documents and program reports. RESULTS: The program is widely accepted among citizens and has achieved many of its original goals: ensuring access to LTSS and reducing reliance on the locally-funded safety-net social assistance program, which can be used to cover nursing home costs. It also strengthened the LTSS provider infrastructure and expanded access to home care. Recent reforms have addressed some of the program's key issues: the benefit's decreasing value, the eligibility and benefit structure that largely excluded cognitive impairment, and the program's longer-term financial sustainability-particularly its ability to sustain newly expanded benefits, which provide stronger protections to caregivers, index-link benefits, and more systematically incorporate cognitive impairment via a new assessment system. It has addressed financing issues by increasing premiums, introducing subsidies for the purchase of private insurance, and creating a "demographic reserve fund." DISCUSSION AND IMPLICATIONS: The reforms constitute a significant strengthening of the program, remarkable in an era of retrenchment. Overall, the program provides evidence for the financial viability of a social insurance model, although longer-term challenges may yet arise.

The emerging market for supplemental long term care insurance in Germany in the context of the 2013 Pflege-Bahr reform.

The growing cost of long term care is burdening many countries' health and social care systems, causing them to encourage individuals and families to protect themselves against the financial risk posed by long term care needs. Germany's public long-term care insurance program, which mandates coverage for most Germans, is well-known, but fewer are aware of Germany's growing voluntary, supplemental private long-term care insurance market. This paper discusses German policymakers' 2013 effort to expand it by subsidizing the purchase of qualified policies. We provide data on market expansions and the extent to which policy goals are being achieved, finding that public subsidies for purchasing supplemental policies boosted the market, although the effect of this stimulus diminished over time. Meanwhile, sales growth in the unsubsidized market appears to have slowed, despite design features that create incentives for lower-risk individuals to seek better deals there. Thus, although subsidies for cheap, low-benefit policies seem to have achieved the goal of market expansion, the overall impact and long-term sustainability of these products is unclear; conclusions about its impact are further muddied by significant expansions to Germany's core program. The German example reinforces the examples of the US and France private long term care insurance markets, to show how such products flourish best when supplementing a public program.