Reimagining the Risk of Long-Term Care

Abstract

U.S. law and policy on long-term care fail to address the insecurity American families face due to prolonged illness and disability — a problem that grows more serious as the population ages and rates of disability rise. This Article argues that, even worse, we have focused on only part of the problem. It illuminates two ways that prolonged disability or illness can create insecurity. The first arises from the risk of becoming disabled or sick and needing long-term care, which could be called “care-recipient” risk. The second arises out of the risk of becoming responsible for someone else’s care, which I call “next-friend” risk. The law and social welfare policy has focused on the first, but this Article argues that the second equally threatens the wellbeing of American families. While attempting to mitigate care-recipient risk, in fact, the law has steadily expanded next-friend risk, by reinforcing a structure of long-term care that relies heavily on informal caregiving. Millions of informal caregivers face financial and nonmonetary harms that deeply threaten their own long-term security. These harms are disproportionately experienced by people who are already vulnerable — women, minorities, and the poor. Scholars and policymakers have catalogued and critiqued these costs but treat them as an unfortunate byproduct of an inevitable system of informal care.

This Article argues that if we, instead, understand becoming responsible for the care of another as a social risk — just as we see the chance that a person will need long-term care as a risk — it could fundamentally shift the way we approach long-term care policy. In risk-theory terms, this Article proposes we reimagine the risk of long-term care.

Keywords: long-term care, health law, health policy, health reform, Medicaid, risk, insurance, informal caregiver, caregiver, social welfare