Un/Paid Labor: Medicaid Home and Community Based Services Waivers That Pay Family as Personal Care Providers

Abstract

The United States long-term services and supports system is built on largely unpaid (informal) labor. There are a number of benefits to allowing family caregivers to serve as paid personal care providers including better health and satisfaction outcomes, expanded workforces, and cost effectiveness. The purpose of this study was to examine how Medicaid HCBS Section 1915(c) waivers for people with intellectual and developmental disabilities allocate personal care services to pay family caregivers. Our analysis revealed about two thirds of waivers in fiscal year (FY) 2014 allowed for family caregivers to potentially be paid for personal care services. This amounted to up to $2.71 billion of projected spending, which is slightly more than half of all personal care service expenditures in FY 2014.

Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce

“…Several Centers for Medicare & Medicaid Services policies enacted in 2015 expanded supports for family caregivers for persons with serious illness including payment to providers for chronic disease management, telehealth in underserved areas, transitional care, and increasing expectations for engaging family caregivers as a condition of participation for hospitals. Further, the Veterans Administration provides financial support for family caregivers of veterans with complex needs, depending on eligibility …”

Beneficiary Work: The Hidden Labor of Medicaid Users Pursuing Cross‐State Moves

“…As a federal‐state fiscal partnership, all 56 Medicaid programs are distinct, with Medicaid‐funded PCA varying greatly across states (United States Department of Health and Human Services, Office of the Secretary ). Interstate variation in Medicaid PCA programs includes what services are offered, who gets access to them, and how access is granted or rationed when demand outstrips available funding (Friedman and Rizzolo , ; Horvitz‐Lennon et al ; Kassner and Shirey ; Kitchener et al , ; LeBlanc, Tonner, and Harrington ; Miller ; Ng et al ; Ng, Stone, and Harrington ; Rizzolo et al ; Summer and Ihara ; Wenzlow et al ).…”

“…When PCA users consider cross‐state moves, they are confronted by interstate variation in Medicaid services (Friedman and Rizzolo ; Rizzolo et al ; Summer and Ihara ; Wenzlow et al ). This variability restricts program users in their pursuit of corporeal mobility—the ability to move one’s body to a new space—by the design, implementation, and enforcement of Medicaid policy (Grossman ; Cass, Shove, and Urry ; Urry , ).…”

Medicaid waivers and public sector mental health service penetration rates for youth.

“…Unless the child has significant income of his or her own, this mechanism allows families of middle and high income levels to access the intensive home-and community-based services paid for exclusively by Medicaid. Medicaid waivers can be used to finance provision of intensive community-based services to youth and adults with complex medical and/or mental health needs (e.g., autism, developmental delays, traumatic brain injuries, as well as severe mental health disorders) that might otherwise need residential or long-term care. Waiver options vary in requirements and objectives but all promote access to comprehensive community-based care to target populations (Friedman & Rizzolo, 2016;Ng, Stone, & Harrington, 2015).…”

“…Because 1915(c) Medicaid waivers are used extensively by states to increase access to HCBS for many target populations, the knowledge base about these waivers is more developed. Several descriptive studies document large variation across state HCBS waiver programs in spending, types, and intensity of services provided to particular target populations, and the numbers served through them (Friedman, Lulinski, & Rizzolo, 2015; Friedman & Rizzolo, 2016; Harrington et al, 2001; Kitchener, Ng, Miller, & Harrington, 2005; Ng et al, 2015; Rizzolo et al, 2013). Such discrepancies result in HCBS access disparities across states (Harrington, LeBlanc, Wood, Satten, & Tonner, 2002), and make evaluation and comparison of state programs challenging.…”