Publications

How do referral networks and medical conditions determine where patients get care? We study this question in the US Hospice Industry, where for-profit hospice programs enroll more long-term care patients and more patients with Alzheimer's disease and related dementia. We find that for-profit hospice enrollees have 23% longer lifetime lengths-of-stay in hospice care than not for-profit hospice enrollees with the same medical conditions, institutional referral source, county of residence, and enrollment year. This and other differences in their end-of-life health care utilization suggest that hospice market segmentation is the result of a patient-specific selection mechanism that is partially independent of institutional barriers to hospice care.

Although neurodegenerative diseases are a leading cause of death, little is known about health care utilization and cost during the end-of-life (EoL) period or how it compares with that of other life-limiting conditions. We aimed to describe and compare resource utilization among US Medicare decedents with neurodegenerative diseases with decedents with cancer. We conducted a retrospective study of Medicare Part A and B beneficiaries with Alzheimer disease (AD), Parkinson disease (PD), or amyotrophic lateral sclerosis (ALS) who died in 2018. Decedents diagnosed with malignant brain tumors or pancreatic cancer served as non-neurodegenerative comparators. Descriptive analyses examined demographic and clinical characteristics in the last year of life. The probabilities and associated costs of emergency department (ED), inpatient, skilled nursing facility (SNF), and hospice utilization during the last 12 and 6 months of life were also compared between persons with neurodegenerative diseases and cancer, adjusting for sociodemographic factors and comorbidity burden. A total of 1,126,799 Medicare beneficiaries died in 2018, of which 357,926 had a qualifying diagnosis. Persons with neurodegenerative diseases were older and more frequently received Medicaid assistance than persons with brain or pancreatic cancer. In all groups, health care service utilization increased over the last year of life, and total costs were predominantly attributable to inpatient care. In the last 6 months of life, neurologist care was infrequent among patients with neurodegenerative disease (AD: 1.5%; PD: 8.6%; ALS: 32.0%). Persons with neurodegenerative diseases as compared to persons with malignant brain tumors also had greater odds of ED use (AD: adjusted odds ratio [aOR] 1.17, 95% CI 1.11-1.23; PD: aOR 1.18, 95% CI 1.11-1.25; ALS: aOR 1.11, 95% CI 1.01-1.23), lower odds of hospitalization (AD: aOR 0.64, 95% CI 0.60-0.68; PD: aOR 0.65, 95% CI 0.61-0.69; ALS: aOR 0.33, 95% CI 0.30-0.37), and lower odds of hospice enrollment (AD: aOR 0.33, 95% CI 0.31-0.36; PD: aOR 0.33, 95% CI 0.31-0.36; ALS: aOR 0.41, 95% CI 0.36-0.46). The findings were similar in pancreatic cancer. Persons with neurodegenerative diseases in the United States are more likely to visit the ED and less likely to use inpatient and hospice services at EoL than persons with brain or pancreatic cancer. These group differences may stem from prognostic uncertainty and reflect inadequate EoL care practices, requiring further investigation to ensure more timely palliative care and hospice referrals.

For nearly a half-century, Congress has created various legal authorities from among which states may select to provide Medicaid beneficiaries with long-term services and supports (LTSS) in home and community-based settings, instead of in institutions. This article describes these legal authorities and their genesis and contends that a simpler architecture would better serve program goals. In theory, state-level variation could shine a light on how Medicaid can best meet beneficiaries’ needs. Instead, a maze of federal legal authorities has resulted in inconsistent and inequitable access to care among beneficiaries and across geographies. The many programs are difficult to understand, even for researchers and regulators trying to measure outcomes. This opacity obscures the most effective paths forward as the demand for Medicaid LTSS grows. Simplifying Medicaid LTSS legal authorities could ease burdens for states and better serve beneficiaries.

To examine the association of Medicaid home- and community-based services (HCBS) expenditures on the home care workforce. We use two national, secondary data sources from 2008 to 2019: state-level Medicaid HCBS expenditures and the American Community Survey, in which we identify direct care workers in the home (i.e., home care workers), defined as nursing, psychiatric, and home health aides or personal care aides working in home health care services, individual and family services, and private households. Our key explanatory variable is HCBS expenditures per state per year. To estimate the association between changes in Medicaid HCBS expenditures and the workforce size, hourly wages and hours worked, we use negative binomial, linear, and generalized ordered logit regression, respectively. All models include demographic and socioeconomic characteristics, the number of potential HCBS beneficiaries (individuals with a disability and income under the federal maximum income eligibility limits), indicators for minimum wage and/or overtime protections for direct care workers, wage pass-through policies, and state and year fixed effects. We exclude states with incomplete reporting of expenditures. States' HCBS expenditures increased between 2008 and 2019 after adjusting for inflation and the number of potential HCBS beneficiaries. Yet, home care workers' wages remained stagnant at $11-12/h. We find no association between changes in Medicaid HCBS expenditures and wages. For every additional $1 million in Medicaid HCBS expenditures, the expected number of workers increases by 1.2 and the probability of working overtime increased (0.0015% points; p < 0.05). Results are largely robust under multiple sensitivity analyses. We find no evidence of a statistically significant relationship between changes in state-level changes in Medicaid HCBS expenditures and worker wages but do find a significant, but small, association with hours worked and workforce size.

Medicaid-funded long-term services and supports are increasingly provided through home- and community-based services (HCBS) to promote continued community living. While an emerging body of evidence examines the direct benefits and costs of HCBS, there may also be unexplored synergies with Medicare-funded post-acute care (PAC). This study aimed to provide empirical evidence on how the use of Medicaid HCBS influences Medicare PAC utilization among the dually enrolled. National Medicare claims, Medicaid claims, nursing home assessment data, and home health assessment data from 2016 to 2018. We estimated the relationship between prior Medicaid HCBS use and PAC (skilled nursing facilities [SNF] or home health) utilization in a national sample of duals with qualifying index hospitalizations. We used inverse probability weights to create balanced samples on observed characteristics and estimated multivariable regression with hospital fixed effects and extensive controls. We also conducted stratified analyses for key subgroups. The primary sample included 887,598 hospital discharges from community-dwelling duals who had an eligible index hospitalization between April 1, 2016, and September 30, 2018. We found HCBS use was associated with a 9 percentage-point increase in the use of home health relative to SNF, conditional on using PAC, and a meaningful reduction in length of stay for those using SNF. In addition, in our primary sample, we found HCBS use to be associated with an overall increase in PAC use, given that the absolute increase in home health use was larger than the absolute decrease in SNF use. In other words, the use of Medicaid-funded HCBS was associated with a shift in Medicare-funded PAC use toward home-based settings. Our findings indicate potential synergies between Medicaid-funded HCBS and increased use of home-based PAC, suggesting policymakers should cautiously consider these dynamics in HCBS expansion efforts.

A growing proportion of individuals adopt family caregiving roles. Family caregivers are the primary providers of long-term care in the United States yet limited federal policy supports exist, despite the known negative impacts of caregiving. There is also limited information about the prevalence of youth/young adult caregivers and the impacts of caregiving at formative ages in the United States. Our objective is to estimate the prevalence of youth caregivers and examine the association of caregiving with educational investments. We use the American Time Use Survey (2013-2019) to identify and describe youth caregivers (aged 15-18) and young adult caregivers (aged 19-22) and compare them with non-caregiving peers. We estimate that there are approximately 1,623,000 youth caregivers and 1,986,000 young adult caregivers, corresponding to 9.2% and 12.7% of these age groups, respectively. However, there is a wide range in the estimated prevalence per year, from approximately 364,000 to 2.8 million youth caregivers and from 353,000 to 2.2 million young adult caregivers, depending on caregiver definition. Unlike adult caregivers, we find that young men and women were nearly equally likely to provide care. We also find that non-White individuals are disproportionately represented as youth caregivers. Compared with non-caregiving peers, both youth and young adult caregivers are less likely to be enrolled in school and, among those enrolled in school, spend significantly less time on educational activities. Considering the association of caregiving among youth/young adults and education, policies supporting youth and young adult caregivers are critical.

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Persons living with Alzheimer's and other related forms of dementia rely heavily on care from family and friends for assistance with daily activities ("family care"), but little is known about care transitions over time. We analyzed data from the Health and Retirement Study to describe caregiving patterns, from 2 years before dementia onset and up to 6 years after. Using sociodemographic data from the interview prior to dementia onset, we determined if there are significant factors that predict receipt of family care at dementia onset. We found that one-third (33%) of people living with dementia were receiving help with daily activities 2 years prior to their first positive dementia screen and this increased to 60% during the first positive screen. Nearly all of those receiving assistance received family care. We found multiple significant predictors of receiving family care at onset, including race, education, access to private health insurance, number of activities of daily living that were difficult, number of chronic conditions, and already receiving help. This demonstrates potential gaps in dementia care, and which subpopulations may benefit most from targeted interventions for household members who do not have adequate caregiving resources or programs that provide additional formal care.