The politics of “personal responsibility” is dominating public policy debates in Washington, DC and many states. The epithet of “fraud, waste, and abuse” reinforces this political labelling. Translated into policy terms, the argument runs: some people lack a disciplined work ethic, so they are undeserving of public assistance, even as they “game the system.”
In Unfinished Business (2012), Keri Day analyzes the neoliberal ideology of personal responsibility in the context of the 1990s Welfare Reform debate. She demonstrates how policymakers fused an Evangelical Christian ethics of personal salvation and patriarchal family control with racialized labelling of Black women as wanton, undeserving fraudsters: the “welfare queen.” Today this evolved ideology is targeting the Affordable Care Act’s Medicaid Expansion for working-age, low-income adults. Republican legislators are singling out its 90% federal match rate as unjust when Medicaid programs for disabled, blind, and elderly people—in their words, "the most vulnerable among us”—receive only 55-70% in federal funding. This biblical appeal to care for the “least of these” is empty, as no one is proposing increasing federal match rates for other Medicaid programs while seeking to cut the Expansion.
This paper advocates a new ethical paradigm for seeking and creating policy change that bolsters individual freedom for health seekers on Medicaid, which covers 72 million people. Instead of the principle of autonomy, bioethicists should develop a contextual account of the “agency” of health seekers, including recognition of the social supports and resource access necessary to promote better community health. Furthermore, to become an authentic community, we must work cohesively to produce public policy solutions through real collective moral formation in community-university teams doing public ethics together.
Our two presenters are a religious ethicist and a pastor/ethnographer who have been collaborating with community partners for seven years, working to build a new public invested in health and wellness in low-income communities. We will present a case study of Community-Valued (the pastor's term), action-oriented research focused on addressing racial and ethnic inequities in Indiana’s Medicaid Expansion, the Healthy Indiana Plan (HIP). With a sociologist as the third member of our interdisciplinary team, our Robert Wood Johnson Foundation-funded, mixed-methods study combines quantitative analysis of Indiana Medicaid enrollment data, interviews with a racially-balanced sample of 100 HIP members, and advocacy through a statewide Community Leadership Board (CLB).
In this paper, we critically analyze “personal responsibility” as a policy framework for health promotion and autonomy that erodes the agency of health seekers, with demonstrably disproportionate harms for Black and Latine individuals. Indiana pioneered structuring personal responsibility incentives into Medicaid. HIP’s complex, multi-tiered benefit plans reward HIP Plus members with full coverage, including vision and dental, if they continue monthly premiums. If not, they drop to HIP Basic, lose vision and dental coverage, and face co-payments for every health care visit and medication. However, during the COVID-19 pandemic, Indiana suspended Medicaid premiums and co-payments, creating a natural experiment to assess how administrative burdens contribute to racial health disparities.
Borrowing a concept from sociology and political science, administrative burdens are “the learning, compliance, and psychological costs associated with determining eligibility, completing documentation, and the stress or stigma from engaging with government programs" (Herd and Moynihan, Administrative Burdens, 2018). These burdens add hurdles for people attempting to enroll and maintain coverage in Medicaid. Our research shows how administrative burdens do not function independently, with each burden erecting a corollary hurdle. Instead, they interact and compound each other, effectively heightening some people's challenges in securing and using Medicaid. Our quantitative analysis demonstrates the racially-disparate effects of compounding administrative burdens: 1) Under pre-pandemic rules, non-Hispanic Black enrollees were 22% less likely to have comprehensive HIP Plus benefits compared to non-Hispanic White enrollees. 2) Rule changes lessened, but did not remove, this disparity until Indiana Medicaid officials administratively moved HIP members stuck on Basic up to Plus. Critically, HIP Basic members can exercise “choice” to re-enroll in Plus annually, but few do.
In The Message (2024), Ta-Nehisi Coates describes “the alchemy of beauty and events” he experienced while leading writing workshops with men who were incarcerated. Similarly, holding dialogues with people living in underserved neighborhoods and building relationships with community leaders supporting and advocating for better social services generate spaces for doing ethics in diverse publics. As people share stories about exercising health agency despite unjust barriers, they name lived experiences of structural racism and nurture healing connections and pathways forward. To note a few of the lessons we will present, a Black interviewee described the stigmatizing attitudes she encounters in applying for HIP as “muscle memory.” So she accompanies other applicants to the Family Resources Office to buffer the psychological cost imposed on their health agency on top of other learning and compliance barriers. After April 2023, when Medicaid eligibility “redetermination” resumed, a Latina interviewee experienced a coverage gap between HIP and Marketplace insurance with so few Spanish-speaking navigators available for culturally-competent assistance.
Public ethics in service of action-oriented change to laws and policies takes deep collaboration in relationship with community experts to name and nurture sacred values together, centering health agency inclusively and equitably. CLB member Bishop Bill McGill coined the rhyme, “Complexity hinders equity.” In a memorable verse, he distills an academic account of compounding administrative burdens into a pithy policy critique. For HIP’s conservative policymakers, good health proceeds from the autonomous choices of health care consumers, prodded by economic incentives to maximize their health coverage and reduce health costs by maintaining wellness through check-ups, relationships with primary care providers, and disease management. Promoting wellness through regular care is laudable. Health agency relies on such connections to social supports and resource access. By contrast, personal responsibility incentives, compounded by a complex system and reinforced by racial stigma, lock health seekers into Basic’s punitive barriers and lock out many HIP-eligible people. Health agency is thwarted by requirements singling out supposedly irresponsible, undeserving people for the discipline they ostensibly need to climb the economic ladder to jobs without the supplementary public assistance required by so many workers today.
This paper advocates a new ethical paradigm for seeking and creating public policy change to bolster individual freedom for millions of health seekers on Medicaid. Bioethicists should prioritize health agency over the principle of autonomy and engage in ethical work with communities who are consistently cast outside the public’s concern. Our mixed-methods, interdisciplinary, community-valued study of Indiana’s Medicaid Expansion, the Healthy Indiana Plan (HIP), examines the “administrative burdens” (Herd and Moynihan, 2018) produced by HIP’s personal responsibility incentives. We demonstrate how these burdens interact and compound each other, contributing to racial disparities in accessing comprehensive health benefits by Black and Latine HIP enrollees. The “alchemy of beauty and events” (Coates, 2024) in the co-production of moral knowledge of sacred values with community members propels our team’s actions for policy change and challenges the framework of health promotion and autonomy through personal responsibility as it resurges through Medicaid nationally.