Racial and Ethnic Differences in Hospice Use Among Medicaid-Only and Dual-Eligible Decedents.

Importance: Hospice care enhances quality of life for people with terminal illness and is most beneficial with longer length of stay (LOS). Most hospice research focuses on the Medicare-insured population. Little is known about hospice use for the racially and ethnically diverse, low-income Medicaid population. Objective: To compare hospice use and hospice LOS by race and ethnicity among Medicaid-only individuals and those with dual eligibility for Medicare and Medicaid (duals) in the Connecticut Medicaid program who died over a 4-year period. Design, Setting, and Participants: This retrospective population-based cohort study used Medicaid and traditional Medicare enrollment and claims data for 2015 to 2020. The study included Connecticut Medicaid recipients with at least 1 of 5 most common hospice diagnoses who died from 2017 to 2020. Exposure: Race and ethnicity. Main Outcomes and Measures: Hospice use (yes/no) and hospice LOS (1-7 days vs ≥8 days.) Covariates included sex, age, and nursing facility stay within 60 days of death. Results: Overall, 2407 and 23 857 duals were included. Medicaid-only decedents were younger (13.8% ≥85 vs 52.5%), more likely to be male (50.6% vs 36.4%), more racially and ethnically diverse (48.7% non-Hispanic White vs 79.9%), and less likely to have a nursing facility stay (34.9% vs 56.1%). Race and ethnicity were significantly associated with hospice use and LOS in both populations: non-Hispanic Black and Hispanic decedents had lower odds of using hospice than non-Hispanic White decedents, and Hispanic decedents had higher odds of a short LOS. In both populations, older age and female sex were also associated with more hospice use. For duals only, higher age was associated with lower odds of short LOS. For decedents with nursing facility stays, compared with those without, Medicaid-only decedents had higher odds of using hospice (odds ratio [OR], 1.49; 95% CI, 1.24-1.78); duals had lower odds (OR, 0.60; 95% CI, 0.57-0.63). Compared with decedents without nursing facility stays, duals with a nursing facility stay had higher odds of short LOS (OR, 2.63; 95% CI, 2.43-2.85). Conclusions and Relevance: Findings raise concerns about equity and timing of access to hospice for Hispanic and non-Hispanic Black individuals in these understudied Medicaid populations. Knowledge about, access to, and acceptance of hospice may be lacking for these low-income individuals. Further research is needed to understand barriers to and facilitators of hospice use for people with nursing facility stays.

The Case for Conducting Pragmatic Dementia Care Trials in Medicaid Home and Community-Based Service Settings.

Medicaid-funded home and community-based services (HCBSs) reach large numbers of individuals living with dementia who would otherwise reside in nursing homes with Medicaid funding. Medicaid HCBSs also often augment care provided by family and other informal caregivers to individuals living with dementia. Although Medicaid-funded HCBSs are offered in most states in lieu of nursing home care, they have been largely overlooked as health care system partners for implementation and testing of evidence-based dementia care interventions using embedded pragmatic clinical trial (ePCT) designs. In this article, we make the case for the importance of Medicaid-funded HCBSs as dementia care ePCT partners because of the volume of vulnerable clients with dementia served and the potential positive impacts that evidence-based dementia care programs can have on clients and their informal caregivers. This article first characterizes the Medicaid HCBS setting in terms of populations served and organizational arrangements across states. We then characterize strengths and potential limitations presented by Medicaid HCBSs as settings within which to implement dementia care ePCTs, using as a conceptual framework the Pragmatic-Explanatory Continuum Indicator Summary (PRECIS-2) tool and its domains. We draw on our experiences implementing the Care of Persons with Dementia in their Environments (COPE) program in a statewide Medicaid HCBS setting to highlight how these potential ePCT partners can help optimize pragmatic approaches to several PRECIS-2 domains. We found that partners are especially effective in implementing pragmatic ways to determine eligibility for evidence-based dementia care programs; assist with recruitment of eligible individuals; incorporate dementia care interventions into the range of existing HCBSs; and track outcomes relevant to persons living with dementia, caregivers, HCBS providers, and Medicaid insurance stakeholders. We conclude with recommendations for researchers, potential ePCT partners, and policymakers to help facilitate the growth of dementia care ePCTs in Medicaid HCBS settings across the United States.

Predictors of Frailty Change in Home and Community-Based Services Populations.

OBJECTIVES: With unprecedented demand for Medicaid long-term services and supports, states are seeking to allocate resources in the most efficient way. Understanding the prevalence of frailty and how it varies across home and community-based services (HCBS) populations can assist states with more precise identification of individuals most in need of services. Early identification of individuals more likely to experience frailty changes could allow for enhanced care planning to prevent or slow the progression of decline. DESIGN: Longitudinal study. SETTING AND PARTICIPANTS: Data from Connecticut's assessment tool (based on interRAI-HC) were analyzed at 2 time points for 16,309 individuals receiving HCBS. The sample included assessments completed between November 1, 2017 and July 15, 2020 across 4 groups: older adults 65+ years old meeting nursing facility level of care (NF LOC), older adults 65+ years old not meeting NF LOC, individuals with acquired brain injury, and individuals <65 years old with physical disability. METHODS: We measured frailty using the Frailty Index (FI) and examined change in FI between baseline and follow-up. A change in FI score of at least ±0.03 was classified as a clinically meaningful change. We compared predictors of clinically meaningful decline or improvement using multivariate logistic regression. RESULTS: In our sample, 54% of individuals experienced a clinically meaningful change: 42% declined and 12% improved. Individuals receiving in-home care services had lower odds of improvement across all HCBS groups and multiple frailty categories with odds ratios ranging from 0.35 to 0.68. Frail older adults 65+ years old meeting nursing facility level of care receiving physical therapy were 21% less likely to experience decline and 1.4 times more likely to improve. CONCLUSIONS AND IMPLICATIONS: The nature of HCBS support provided can impact changes in frailty status. More reactive services such as in-home care may contribute to frailty decline while rehabilitative services such as physical therapy may protect against decline.

A New Stage of the Caregiving Career: Informal Caregiving After Long-term Institutionalization.

BACKGROUND AND OBJECTIVES: The "unexpected career" of caregiving has previously been conceptualized in stages: community care through institutional placement/residence, ending with death of the care recipient. Transition programs such as Money Follows the Person (MFP) created a new stage of the caregiving career, caring for someone post-long-term institutionalization, about which little is known. Using Pearlin's Caregiver Stress Process Model, this study explores effects on caregivers from the return of their loved ones to the community after a long-term institutional stay. RESEARCH DESIGN AND METHODS: Cross-sectional surveys of 656 caregivers of persons transitioned through Connecticut's MFP program 2014-2018, completed 6 months posttransition. RESULTS: Regardless of the age/disability of the care recipient, and despite experiencing high caregiving intensity, caregivers experienced less burden, anxiety, and depression, and higher benefits of caregiving than demonstrated in literature for the general caregiving population. Most felt less stressed than before and during the participant's institutional stay. Factors associated with worse outcomes included worry about safety, strained finances, missing work, and desiring additional services. Black and Hispanic caregivers experienced lower burden and anxiety and higher benefits of caregiving than White caregivers. DISCUSSION AND IMPLICATIONS: By providing community supports to participants, transition programs can have broad ancillary benefits for caregivers and improve outcomes in the Pearlin model, lessening potentially deleterious effects of an unexpected return to intensive caregiving duties after institutional placement. Positive results for Black and Hispanic caregivers may reflect cultural expectations in caring for family that buffer the adverse effects of caregiving.

Outcomes Associated with Home and Community-based Service Use Among Older Adults following a Nursing Home Transition.

We examined relationships between home and community-based services (HCBS) and reinstitutionalization and choice and control in daily activities for older Money Follows the Person (MFP) Rebalancing Demonstration participants in Connecticut. Using Connecticut MFP program and Quality of Life survey data for 647 participants aged 65, and older who transitioned from a nursing home to the community between 2013-2016, we conducted logistic regressions to determine whether HCBS type (traditional HCBS; hourly personal care attendant [PCA]; live-in PCA) was associated with reinstitutionalization and choice and control 12 months after moving into the community. Relative to receiving traditional services, having hourly or live-in PCA services were associated with having lower odds of both reinstitutionalization and choice and control. Findings can help strengthen HCBS delivery for older adults living in the community.

Challenges to community transitions through Money Follows the Person.

OBJECTIVE: To examine the effects of transition challenges on the success and timeliness of transitions from institutions to community living for long-stay participants in the Money Follows the Person (MFP) Rebalancing Demonstration and determine whether outcomes vary by age and disability. DATA SOURCE: Secondary data on transition challenges for individuals enrolled in Connecticut's MFP program between December 2008 and December 2017. STUDY DESIGN: Challenges were analyzed for older adults, people with mental health disability, and people with physical disability. Bivariate and multivariate analyses investigated which transition challenges and selected demographic variables predict transition versus closure and length of transition period for each group. DATA EXTRACTION METHODS: The sample includes 3506 persons who attempted transition from institutions to community living and whose case concluded with transition or closure from 2015 to 2017. PRINCIPAL FINDINGS: The association between most transition challenges and the ability of long-stay institutional residents to return to the community, and to do so in a timely manner, varies significantly among older adults and younger persons with physical or mental health disabilities. For all groups, however, consumer engagement challenges predicted closure without transition (OR: 1.3-3.9) and housing challenges predicted longer transition periods (84-132 days). Length of institutional stay was associated with both outcomes for older adults and persons with physical disability. Other challenges, such as issues with services and supports, differed among the three groups on both outcomes. CONCLUSIONS: Knowledge of the effects of transition challenges on success and timeliness of transition for each group allows program managers and health and service providers to focus resources on addressing the most serious challenges. Particular emphasis should be placed on consumer engagement and housing challenges, and on targeting persons for transition early in their institutional stay. Federal and state transition programs can benefit by individualizing supports for residents to yield successful outcomes.

Progress and Policy Opportunities in Family Caregiver Assessment: Results From a National Survey.

Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes.

Connecticut's 'Money Follows The Person' Yields Positive Results For Transitioning People Out Of Institutions.

A centerpiece of federal and state efforts to rebalance long-term services and supports to enhance consumer choice and contain costs, the federal Money Follows the Person Rebalancing Demonstration helps qualified individuals living in institutions make the transition to life in the community. The Connecticut Money Follows the Person program is an unusually rich source of data, with information on the 2,262 people who transitioned to the community under that state's program during 2008-14. Responses to participant surveys completed before and six, twelve, and twenty-four months after transition indicate that, for the majority of respondents who remained in the community, quality of life and life satisfaction improved significantly after transition, and they stayed high. About half of the participants visited hospitals or emergency departments after transition; however, only 14 percent had returned to an institution one year after transition. Predictors of reinstitutionalization included some not previously observed: mental health disability, difficulties with family members before transition, and not exercising choice and control in daily life. These and other findings suggest multiple ways in which policy makers can target efforts to strengthen transition programs that can meaningfully improve people's lives while containing costs.

Medicare and Medicaid users speak out about their health care: the real, the ideal, and how to get there.

To inform the design of an integrated health and social service program that will better coordinate care for individuals dually eligible for Medicare and Medicaid, a qualitative study was conducted using 13 focus groups. Participants consisted of a purposeful sample of dually eligible individuals (1) aged 65+ years (8 focus groups: N=71), and (2) aged 18-64 years with disabilities (5 focus groups: N=45), recruited in collaboration with the Connecticut Legislature's Medical Assistance Program Oversight Council and numerous community-based agencies across the state. Older adult participants included nursing home residents, community-dwelling healthy individuals and individuals with chronic illness or disability, family members of individuals with chronic illness or disability, and 1 community-dwelling group of Spanish-speakers. Younger adult participants included persons with physical, intellectual/developmental, and/or mental health disabilities, and parents, case managers, nurses, and residential managers of persons with intellectual/developmental disabilities. Through the constant comparative method, results clustered in 4 domains: current experiences, care coordination, consumer protection, and elements of an ideal health care program. Significant findings include difficulty finding providers who accept Medicare/Medicaid, medication management, age and racial/ethnic discrimination, and care coordination. Findings highlight the policy implications of designing a person-centered, coordinated dual coverage system. Desired elements of an ideal system include greater choice in providers of all types, including culturally competent medical and home care providers, increased coordination among medical providers and between medical and home care/social service providers, and a prominent role for pharmacists in counseling participants and in serving as part of care coordination teams. (Population Health Management 2015;18:123-130).

Long-term supports and services planning for the future: implications from a statewide survey of Baby Boomers and older adults.

PURPOSE OF THE STUDY: Little is known about adults' future planning for long-term supports and services (LTSS), and no studies have examined how LTSS planning compares between Baby Boomers and their parents' generation. The primary aim of this study is to examine the potential influences of birth cohort and gender on LTSS planning. Drawing on Andersen's Behavioral Model of Health Services Use, birth cohort and gender are viewed as predisposing characteristics, and several additional predisposing, enabling, and need characteristics are included as independent variables. DESIGN AND METHODS: Cross-sectional design; data obtained from a statewide survey of 2,522 randomly selected Baby Boomers (born between 1946 and 1964) and older adults (born before 1946). RESULTS: Two thirds of respondents expected to need LTSS, but few reported saving for such services. Controlling for other independent variables, compared with older adults, Baby Boomers were significantly more likely to plan to move to an apartment, live in a retirement community or assisted living, and live with an adult child. Conversely, women were more likely than men to report planning to use specific LTSS such as homecare, but specific LTSS plans did not vary by birth cohort. IMPLICATIONS: Policymakers and providers should prepare for a shift in community planning to accommodate the changing plans and expectations of Baby Boomers, large numbers of whom plan to age in existing homes and retirement communities, or live with adult children, with increasing demand for informal family support. The LTSS industry should also adapt to meet the need for formal services, which will likely continue to grow.

Transition from home care to nursing home: unmet needs in a home- and community-based program for older adults.

A major effort is under way nationally to shift long-term care services from institutional to home- and community-based settings. This article employs quantitative and qualitative methods to identify unmet needs of consumers who transition from a statewide home- and community-based service program for older adults to long-term nursing home residence. Administrative data, care manager notes, and focus group discussions identified program service gaps that inadequately accommodated acute health problems, mental health issues, and stressed family caregivers; additional unmet needs highlighted an inadequate workforce, transportation barriers, and limited supportive housing options. National and state-level policy implications are considered.

Individual decision making in the non-purchase of long-term care insurance.

PURPOSE: Although prior research suggests that economic, behavioral, and psychosocial factors influence decisions not to purchase long-term care insurance, few studies have examined the interplay among these factors in depth and from the consumer's point of view. This study was intended to further illuminate these considerations, generate hypotheses about non-purchasing decisions, and inform the design of policies that are responsive to concerns and preferences of potential purchasers. DESIGN AND METHOD: Qualitative study using 32 in-depth interviews and 6 focus groups, following a grounded theory approach. RESULTS: Five themes characterize decisions not to purchase long-term care insurance: (a) the determination that a policy is "too costly" reflects highly individualized and complex trade-offs not solely economic in nature, (b) non-purchasers are skeptical about the viability and integrity of private insurance companies and seek an unbiased source of information, (c) family dynamics play an important role in insurance decisions, (d) contemplating personal risk for long-term care triggers psychological responses that have implications for decision making, and (e) non-purchasers feel inadequately informed and overwhelmed by the process of deciding whether to purchase long-term care insurance. IMPLICATIONS: States are seeking to offset escalating Medicaid long-term care expenditures through a variety of policy mechanisms, including stimulating individual purchase of long-term care insurance. Findings suggest that economic incentives such as lowering premiums will be necessary but not sufficient to attract appropriate candidates. Attention to behavioral and psychosocial factors is essential to designing incentives that are responsive to concerns and preferences of potential purchasers.

A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation.

OBJECTIVES: Informal caregivers provide the majority of long-term care. This study examined six health and psychosocial outcomes of caregiving, in the context of multiple characteristics of the caregiving situation, in a representative, statewide sample. METHODS: Data came from 4,041 respondents to the 2007 Connecticut Long-Term Care Needs Assessment. Analyses investigated whether caregiving negatively affects depressive symptoms, health, missing work, and social isolation. Logistic regressions tested the independent effects of caregiver characteristics and conditions of the caregiving situation on these health and psychosocial outcomes. RESULTS: Caregivers rate their health better than noncaregivers and do not report more depressive symptoms or social isolation. Living with the care receiver, inadequate income, and care receivers' unmet need for community-based long-term care services relate to multiple negative outcomes. Care receiver memory problems and caregiver/care receiver relationship do not relate to health or psychosocial outcomes when these other factors are considered. DISCUSSION: Caregiving per se does not lead to symptoms of depression, poor health, or social isolation. Many caregivers do need supports in training and education, respite, and physical and mental health care. Such programs should provide outreach to caregivers facing specific stressful conditions, as not all caregivers experience negative consequences.