Consumer Direction in Medicaid Long Term Care: Autonomy, Commodification of Family Labor, and Community Resilience

Abstract:     
Under the new consumer-directed option (often called “Cash and Counseling”) in the United States’ Medicaid program, beneficiaries may choose to receive a stipend to manage their own long term care needs, instead of receiving long term care managed by a home health agency. The consumer uses the voucher to hire workers directly. Consumer direction arose to increase the autonomy, expressed as either consumer choice or individual self-determination, of persons with disabilities. It also opens up a new pool of paid direct care workers - many beneficiaries hire family members to provide care.

Consumer direction in Medicaid-funded long term care is the first potentially large scale, state-funded commodification of family carework in the United States. This article explores the positive and negative consequences when the emphasis on autonomy meets the commodification of family labor in the context of a state program under pressure to contain costs. The program emphasizes the self-determination of the beneficiaries and provides a wage replacement for family members who provide care. On the other hand, it ignores the effects of commodification on the family caretakers and other workers. It (1) pits the interest of the consumer as employer against the interest of the family member as worker; (2) perpetuates exploitation of direct care workers by allowing the state to shed responsibility for decent wages, benefits and workplace protections; (3) may, in some cases, undermine attempts by direct care workers to bargain collectively; and (4) carries opportunity costs for the family member workers who are not participating in the regular labor force. As a result, the program reinforces race, gender, class-based inequalities in both paid and unpaid long term care work. The article concludes by exploring how placing the concept of community resilience, rather than individual autonomy, at the center of long term care policy might result in a stronger and more equitable system for both providing and receiving care.

Number of Pages in PDF File: 50

Keywords: long term care, long-term care, direct care, carework, cash and counseling, resilience, medicaid, consumer direction, PAS

Accepted Paper Series