Does switching to paid family care (versus paid aides) increase time at home or reduce publicly funded healthcare costs for Medicaid waiver beneficiaries with disability? - REVISED There is a long history of state’s Health and Human Services Departments obtaining waivers to offer self-directed care for Medicaid beneficiaries with intensive home care needs. Many states provide flexibility in how waiver beneficiaries can exercise self-direction, including choosing an agency-provided aide or a qualifying eligible family member. Ability to pay a family member accelerated in 2020, when scarcity of aides drove states to allow switching from an aide to a family member; scant evidence on the effects on person-centered outcomes exists to support dissolution or expansion. In fact, available evidence from a clinical demonstration suggests payment-induced family care causally reduces patient acute care use, inpatient expenditures, and adverse outcomes. What remains unknown, however, is whether paid family care increases beneficiaries’ ability to remain safely at home or changes publicly funded healthcare costs in real world Medicaid programs. With no national data on “who is paid”, this study aims to address these knowledge gaps using North Carolina (NC) as a case to examine an understudied waiver beneficiary population: adult patients living with disability. This benefit design change was plausibly external to individual health status, since switching arose from necessity as aides became scarce. And yet, preferences also could drive a switch, making the choice of provider type not random. Therefore, the objectives of the current five-year R01 study are to use causal methods to compare the effect of switching to family care on person-centered outcomes, potential harms and public expenditures for adult NC Medicaid waiver beneficiaries living with disability. We will descriptively evaluate NC’s benefit design change linking claims, managed care, and program data from 2017-2025 (Aim 1), comparing a) beneficiaries who switched from aides to paid family care and b) beneficiaries who remained with aides, focusing on the full sample and those with specific individual (e.g., age), geographic (e.g., rurality), and diagnostic characteristics (e.g., dementia). Using rigorous quasi-experimental methods, we will estimate the average treatment effect of switching from paid aide care exclusively to paid family care on person-centered outcomes, potential harms (Aim 2) and public expenditures (Aim 3) 6-48 months post-switch compared to a non-equivalent comparison group of non-switchers. Person-centered outcomes were selected to reflect beneficiary preference to remain well at home: (a) preventive outpatient care, (b) [primary] cumulative days at home, or days NOT spent in emergency, inpatient, or post-acute care settings (or “home time”), (c) avoided treat and release emergency department visits, and (d) delayed permanent nursing home transitions. Potential harms were selected to capture outcomes to be avoided: (e) potentially inappropriate medications, (f) fall-related injuries, and (g) mistreatment. We will explore effects on pre-specified subgroups of switching to paid family care (vs. not switching) on PCOs and harms 6-48 months post-switch by individual, geographic, and diagnostic criteria (Aim 4). Examining this change in self-direction, which drives a plausibly causal shift in the supply of “who is paid” to provide home care (family versus aides alone), aligns with NIA’s 2020-2025 strategic goal to improve the health, well-being, and independence of adults as they age. Results will be immediately actionable by informing healthcare providers, health systems, hospitals, and patients about how the type of home care provider directly affects the health and healthcare of patients living with disability.
