I’ll never forget my first Medicaid Fair Hearing as a legal aid attorney. The issue was whether my client, who was quadriplegic, was approved for sufficient Personal Care Attendant (PCA) time to chew his food. My client had recently been hospitalized for two months with aspiration pneumonia, a life-threatening condition caused by food entering the airway. His doctors advised him to eat slower, so he requested an additional 15 minutes of PCA assistance with eating per meal. The state Medicaid agency denied his request. The reason? They characterized the activity—waiting for my client to chew—as “supervision,” a non-covered service under the PCA program, rather than assistance with eating. My client and I found this reasoning absurd. At the hearing, we argued that waiting for a person to finish chewing is a natural and necessary component of feeding a person. Thankfully, we won, but that early experience of having to “fight” for every minute of PCA time for my client left me with an unfavorable impression of the home care bureaucracy.
I was reminded of this experience while reading Yiran Zhang’s forthcoming article, which focuses on subsidized home care in the United States. Professor Zhang describes the home care system’s origin in poverty law programs and its associated hyper-regulatory structure designed to combat fraud. Professor Zhang explores the administrative burdens that this structure places on both those who receive care as well as their caregivers, the latter of whom are disproportionately low-income women of color and immigrant women. She proposes an alternative structure for the public home care system modeled on the Department of Veterans Affairs’ caregiver programs for veterans with service-related disabilities.
The article begins with an overview of the U.S. home care system before turning to an important scholarly debate over care and the state: Are state interventions in family life too absent or too present? Professor Zhang contrasts the former perspective—which has urged state intervention to provide federal paid leave for caregiving duties and universal subsidized childcare—with the latter, which most notably includes critiques of the child welfare system and also cash assistance programs like Temporary Assistance for Needy Families that surveil and regulate poor families. This is a significant theoretical contribution that places Professor Zhang’s scholarship in conversation with leading scholars on care and the state.
In her discussion of the bureaucratization of home care, Professor Zhang highlights features of bureaucracies—task-based division of labor, quantification, and documentation among them—that clash with the actual provision of personal care. Such care does not always fit neatly into discrete categories that can be quantified and documented because it is “fundamentally relational and emotional.” As an example, Professor Zhang quotes a caregiver who describes her father’s refusal to wear his dentures to eat, requiring her to prepare and feed him specific soft foods. This task takes time that may not be allocated in his personal care plan and is therefore unpaid labor.
Professor Zhang then turns to the heart of her argument, linking the bureaucratization of home care to the political economy literature. She explains how poverty law programs influenced the development of the home care system, which, at its core, assumes that both care recipients and caregivers are untrustworthy and therefore must be heavily surveilled and audited. While identifying the current structure’s significant weaknesses (creating invisible bureaucratic work, leaving care gaps), Professor Zhang also acknowledges its strengths in preventing fraud and neglect and standardizing the provision of home care.
I encourage health law scholars to read this article to learn from Professor Zhang’s deep dive into an oft-overlooked component of subsidized health care. Given that the number of people needing long-term care is projected to increase rapidly in the years to come, home care is one of the fastest-growing industries, and Medicaid and other public programs are the major payors for home care, this article addresses a topic of significant political and economic importance. Congrats to Professor Zhang on authoring a timely and thought-provoking article!
