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BACKGROUND AND OBJECTIVES:Consumer-reported measures are important quality indicators for ensuring person-centeredness in home and community-based services (HCBS). However, administrative data commonly used to assess HCBS quality often lacks consumer-reported measures. To address this gap, we developed and validated novel consumer-reported quality indicators using data from the National Core Indicators-Aging and Disability (NCI-AD) Adult Consumer Survey. RESEARCH DESIGN AND METHODS:We conducted exploratory factor analyses using the 2018-2019 survey wave of NCI-AD (n = 5,572 community-dwellingolder consumers, age ≥65 years) and identified seven QIs. We then confirmed the validity of these seven new QIs in 2 ways: (a) qualitatively through a technical expert panel (for face validity and contextualization) and (b) quantitatively, using confirmatory factor analyses in the 2017-2018 survey wave (n = 9,145 community-dwelling consumers, age ≥65 years). RESULTS:The seven validated QIs were service satisfaction, staff quality, environmental safety, service decision-making, daily life decision-making, community inclusion, and overall health and quality of life. Internal consistency was strong across domains (Cronbach's alpha = 0.63-0.89; McDonald's omega = 0.70-0.90). Exploratory analyses also identified differences in selected QI scores by dementia status and age. DISCUSSION AND IMPLICATIONS:These seven consumer-reported QIs provide a practical, validated framework for evaluating person-centered HCBS quality. They can support researchers, providers, and policymakers in monitoring service quality, identifying modifiable targets for improvement, and advancing quality measurement in publicly funded HCBS.
BACKGROUND:Long-term services and supports (LTSS) serve > 9 million adults in the United States. We examined prevalence and quality of life (QoL)-related outcomes of consumer-reported unmet LTSS needs in publicly-funded LTSS. METHODS:We pooled cross-sectional data from the 2016-2017, 2017-2018, 2018-2019, 2021-2022, and 2022-2023 National Core Indicators-Aging and Disability Adult Consumer Surveys. We included 61,829 adults (34% with age < 65 years; 66% female; 27 states). Survey weights generated population-representative estimates. We ascertained unmet LTSS needs by response to: "Do the long-term care services you receive meet your current needs and goals?" (dichotomized- yes vs. no). We estimated weighted prevalence of unmet LTSS needs overall and across subpopulations, and examined associations with two self-reported QoL-related outcomes (dichotomized- yes/no): (1) being active in community; (2) satisfied with how one spends one's day. Prevalence ratios (PRs) were estimated using weighted Poisson regression with robust variance estimators, adjusting for demographics, health and functional status, multimorbidity, funding program, residence setting, state, and survey year. RESULTS:Among respondents, 18,004 (weighted-estimate, 29%) reported unmet LTSS needs. Prevalence of unmet needs varied across sociodemographic strata, care settings (higher in community-based than in residential-care settings), and funding programs (lower in PACE than in Medicaid programs). Individuals with unmet needs were significantly less likely to report being active in the community (PR, 0.65; 95% CI, 0.62-0.68) and satisfied with how they spend their day (PR, 0.62; 95% CI, 0.60-0.64). Post hoc analyses revealed potential dose-response associations between increasing degree of unmet LTSS needs and outcomes. CONCLUSIONS:Consumer-reported unmet LTSS needs are frequent, vary greatly across care settings and funding programs, and are associated with poorer QoL-related outcomes; highlighting substantial system-level gaps in the fragmented LTSS landscape and the need for coordinated investments and structural reforms to better meet the needs of individuals relying on these services.
Disability status is rarely included in health research and policy, including intersectional research, perpetuating health inequities for this population. This paper calls on researchers and policymakers to take concrete steps to advance health equity for disabled people, including those at the intersections of disability, race, ethnicity, poverty, and other marginalized identities. We propose four strategies with recommendations to promote: a) meaningful engagement of disabled and multiply marginalized people in research and policy planning; b) cohesive, systemic disability data collection and analyses; c) use of intersectional approaches to examine structural drivers of health inequities; and d) leveraging of administrative data to improve disability healthcare policies and practices.
Access to home- and community-based services (HCBSs) varies substantially between states. Yet, it is unknown how state-level policies and administrative factors impact consumer-reported unmet service needs, an important indicator of HCBS access and quality. Using the National Core Indicators—Aging and Disability Adult Consumer Survey (2016–2019; n = 13,654 community-dwelling older adults, 13 states), we examined associations between unmet HCBS needs with four state-level factors: HCBS spending relative to institutional care spending, HCBS spending per client, percentage of Medicaid beneficiaries in managed care, and Medicaid expansion; and funding program. In the adjusted logistic regression model, the odds of overall unmet HCBS needs were lower with higher percentage Medicaid beneficiaries in managed care (adjusted odds ratio [aOR], 0.92; 95% confidence interval [CI], 0.89–0.96) and Medicaid expansion (aOR, 0.80; 95% CI, 0.73–0.87) but greater with higher HCBS spending relative to institutional care spending (aOR, 1.19; 95% CI, 1.11–1.28). Compared to Medicaid waiver, odds of unmet HCBS needs were significantly lower among consumers in Managed Long-Term Services and Supports (aOR, 0.67; 95% CI, 0.61–0.74) and Program of All-Inclusive Care for the Elderly (PACE; aOR, 0.39; 95% CI, 0.31–0.49). State policies and administrative factors are important place-based determinants of HCBS consumers’ unmet HCBS needs/access; and warrant consideration in HCBS quality assurance and improvement.
More than 4 million older adults in the United States use publicly funded home-and community-based services (HCBS) which were disrupted during the COVID-19 pandemic. There is paucity of empirical evidence of how service disruptions influenced consumer needs in different types of HCBS. Therefore, we evaluate changes in service use and consumer-reported unmet service needs in HCBS during the COVID-19 pandemic (2021–2022) versus pre-pandemic (2018–2019), to inform future public health emergency (PHE) preparedness. We analyzed repeated cross-sectional survey data from the National Core Indicators- Aging and Disability Adult Consumer Survey in two survey waves, 2018–2019 and 2021–2022. We included community-dwelling, older HCBS consumers (age ≥ 65 years; n = 7143) from 11 states that participated in both survey waves. We measured service use and consumer-reported unmet needs as outcomes for six commonly used HCBS including personal care, homemaker, meal delivery, adult day, transportation, and caregiver respite/support. Using logistic regression, we calculated adjusted odds ratios (aOR) and 95
