Unequal Coverage

The Experience of Health Care Reform in the United States

Heide Castañeda, Jessica M. Mulligan

• Publisher: NYU Press
• Year: 2017
• ISBN:
  9781479834402
• Topic: Medicine
• Subtopic: Health Care Delivery

The Affordable Care Act’s impact on coverage, access to care, and systematic exclusion in our health care system The Affordable Care Act set off an unprecedented wave of health insurance enrollment as the most sweeping overhaul of the U.S. health insurance system since 1965. In the years since its enactment, some 20 million uninsured Americans gained access to coverage. And yet, the law remained unpopular and politically vulnerable. While the ACA extended social protections to some groups, its implementation was troubled and the act itself created new forms of exclusion. Access to affordable coverage options were highly segmented by state of residence, income, and citizenship status. Unequal Coverage documents the everyday experiences of individuals and families across the U.S. as they attempted to access coverage and care in the five years following the passage of the ACA.It argues that while the Affordable Care Act succeeded in expanding access to care, it did so unevenly, ultimately also generating inequality and stratification. The volume investigates the outcomes of the ACA in communities throughout the country and provides up-close, intimate portraits of individuals and groups trying to access and provide health care for both the newly insured and those who remain uncovered. The contributors use the ACA as a lens to examine more broadly how social welfare policies in a multiracial and multiethnic democracy purport to be inclusive while simultaneously embracing certain kinds of exclusions. Unequal Coverage concludes with an examination of the Affordable Care Act’s uncertain legacy under the new Presidential administration and considers what the future may hold for the American health care system. The book illustrates lessons learned and reveals how the law became a flashpoint for battles over inequality, fairness, and the role of government. More books on the health care debate

Figure S1.1. Undocumented Worker. The Taxpayer March on DC proceeds down Pennsylvania Avenue toward the Capitol on Saturday, September 12, 2009. (CQ Roll Call via AP Images)

SECTION I

Inclusions and Exclusions

When the Affordable Care Act (ACA) was enacted, it represented a sweeping transformation of the U.S. health care system designed to make access to health insurance more equitable and affordable. However, it built upon a legacy of existing stratification that had long excluded people by class, occupation, race, ethnicity, gender, and sexuality. This foundation was coupled with a series of political and legal compromises and concessions, including the U.S. Supreme Court ruling that permitted states to decide whether or not to expand Medicaid (in those that didn’t, the “coverage gap” was created). As a result, while many people found themselves newly included, others experienced no change to their health insurance status or were purposely shut out. While the law represented an extension of social protections to some groups, it also created new forms of exclusion as access to affordable coverage options were highly segmented by state of residence, income, and citizenship status.

Figure S1.2. Texas Insurance Sign-Up. Eric Sosa, center, and Nancy Maldonado, right, listen to a volunteer counselor with Insure Central Texas explain health insurance options, Tuesday, October 1, 2013, in Austin, Texas. Texas hospitals, clinics, and charities are gearing up to help uninsured Texans enroll in health care exchanges after Governor Rick Perry declared the state government would do as little as possible to help implement the Affordable Care Act. (AP photo/Eric Gay)

Many immigrants were explicitly excluded from the ACA, including undocumented persons and those with less than five years of residency in the United States. The ACA is layered on an existing patchwork of policies that already created segregated effects, especially the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA). However, as the following chapters show, immigrant groups in the United States are not monolithic but instead are stratified by many chaotic bureaucratic categories. Because the ACA maintained most of these prior exclusions—such as the exclusion of “nonqualified” immigrants from Medicaid—while simultaneously creating new exclusions (such as that of DACA recipients, who arrived as children and were granted a temporary reprieve under President Obama), this lead to quite a checkered landscape of eligibility for immigrants in mixed-status families (Castañeda). Moreover, as the federal government has devolved to states the decision about whether to restore inclusion in Medicaid for certain unqualified immigrants (such as legal permanent residents, who have been in the United States for less than five years) (Joseph)—as well as what services Emergency Medicaid should provide undocumented immigrants (Melo), this landscape of exclusion varies dramatically across states. In addition, some states that had inclusive practices before the ACA and that included these immigrants (e.g., Massachusetts) continued to do so, while others later used the state option to expand eligibility to these groups (e.g., California). Finally, the chapter by Andaya shows that some groups experienced exclusions and inequality not because they were left out of the ACA, but because of the kind of coverage they were afforded.

1

Stratification by Immigration Status

Contradictory Exclusion and Inclusion after Health Care Reform

HEIDE CASTAÑEDA

While the Patient Protection and Affordable Care Act of 2010 (ACA) extended public and private insurance to some 20 million individuals (Garrett and Gangopadhyaya 2016), this chapter argues that it stratified immigrants with harsh and sometimes contradictory results. The ACA squarely addressed the problem of uneven access, though it stopped well short of universal health care. However, the sheer size of the excluded immigrant population in the United States stands in the way of the goal of expanding coverage (Panday et al. 2014). Immigrant communities cannot be viewed as monolithic as they are stratified by a multitude of chaotic bureaucratic categories that are created by the state and set specific parameters for inclusion and exclusion.

This chapter provides evidence that juridico-legal categories of immigration status mattered just as much as means-tested categories for the ACA. Experiences of inclusion were complex, and especially evident in the unexpected grey areas I present here, where particular categories of immigrants were included or excluded from the benefits associated with the ACA in often-contradictory ways. Less unexpected, perhaps, is the explicit exclusion of an estimated 11.2 million undocumented immigrants. Marrow and Joseph (2015) have argued that the health care reform intentionally increased the “brightness” of immigrants’ symbolic and social exclusion within the U.S. health care system, creating a massive boundary shift that resulted in a stronger and clearer separation of undocumented immigrants from the rest of the morally “deserving” U.S. body politic. This shift occurred, first, through a boundary expansion for U.S. citizens and long-term legal immigrants, and second, through a boundary contraction for undocumented immigrants.

This chapter furthers this analysis by arguing that the boundary contraction worked alongside other policies and within household structures to complicate the issue not only for some authorized immigrants, but also for U.S. citizens. It illustrates these unanticipated and contradictory effects by examining eligibility categories delineating between “qualified” and “non-qualified” immigrants. Both of these designations applied only to those considered “lawfully present immigrants”; as the law already explicitly excluded undocumented immigrants, they are not the subjects of the current chapter. Instead, I focus on three cases in which the inclusion of lawfully present persons became muddled and resulted in unexpected and contradictory situations: first, U.S. citizen children in mixed-status families; second, the exclusion of young adults holding deferred action for childhood arrival (DACA) status; and third, a loophole that allowed some immigrants to qualify for insurance subsidies while U.S. citizens living in the same state did not. Although not focused on undocumented persons, this chapter does speak to the extended, indirect effects of excluding them from health care access through the resulting impacts on lawfully present immigrants and U.S. citizens.

Following the passage of the ACA, different state governments took quite diverse approaches to implementing the law, with some creating state-based exchanges, expanding Medicaid, and supporting the application process. Texas, however, remained in adamant opposition to the law; its position is best described as “absolute non-collaboration” (Jones et al. 2014). A large portion of the population remained ineligible for Marketplace insurance and subsidies, either because they were undocumented or were among the working poor who made less than 100% of the federal poverty level. Texas rejected the expansion of adult Medicaid, which would have insured 1.5 million low-income working adults and brought in billions in federal funding to remedy this gap. Thus, the benefits associated with the ACA remained uncertain for a large percentage of those living in the region, and the burden of filling gaps in health care continued to fall on the severely underfunded local levels.

While certain contradictions are best highlighted through a specific research site such as the one presented here, this chapter also steps back to examine processes and implications on a much wider scale, arguing that the policy convergence of immigration and health care reform is a useful lens with which to understand the reinforcement of categories of deservingness and stratified citizenship, even within a diverse migrant population.

Methods

This chapter draws from data gathered from ethnographic fieldwork along the Texas/Mexico border, where through a series of projects we have been talking with immigrants of various statuses along with community stakeholders in order to understand how the state and its agents demarcate the contours of inclusion (Castañeda and Melo 2014). This region remains home to the highest rate of uninsured persons in the nation, having garnered first place in a list of “Counties that Need the Affordable Care Act the Most” (Chu and Posner 2013). While Texas has the highest uninsurance rate in the nation, this county has the highest rate in the state.

This research was informed by semi-structured interviews with 167 individuals living in mixed-status families in Hidalgo County, Texas. Of these, 75 individuals completed a follow-up interview one year later, providing a longitudinal picture of their lives, while ten participants completed two additional interviews and were followed for more than four years. Participants were recruited using purposive referral (snowball) sampling after initial individuals who met the inclusion criteria were identified with the assistance of local community-based organizations. A $20 gift card to a local retailer was provided as an incentive. Interviews lasted from 35 minutes to two hours and took place at a location of the participant’s choice, typically in their homes. The author or research assistant Melo (see chapter 2) conducted all initial and follow-up interviews. Interviews were conducted in Spanish (n=94), English (n=61), or both languages (n=12) and audio-recorded with the participant’s consent.

Another source of data was informal interviews with health care providers, caseworkers, navigators, social workers, organizational staff, public health officials, researchers, and other key stakeholders (n=62). Five of these interviews were conducted in Spanish, while the rest were in English. Because they were the result of different project phases, only 21 were audio-recorded and the rest relied on extensive note taking. These interviews provided background information about county characteristics, historic efforts at improving health care, availability of services, and major challenges and successes experienced.

All interviews were transcribed verbatim and then analyzed with the aid of MAXQDA (Version 12) software. The coding process utilized both deductively derived codes identified from an initial pilot study, as well as inductively derived codes emerging from the data and reflecting the particular concepts and concerns of participants. Descriptive coding was utilized to draw out major phrases and concepts and to compare and contrast data points across interviews. Systematic analysis identified categories and concepts that emerged from the text, which were linked to the theoretical constructs in an iterative process. The preliminary analyses were brought back to organizational partners in August 2016 for critique and validation through summaries and small group discussions.

The results sections that follow describe major themes that emerged relating to the ACA and health care access. All Spanish quotes have been translated into English by the author, and all names are pseudonyms.

Immigration Status and Health Care Reform

The ACA utilized several distinct categories of juridico-legal status to determine individuals’ eligibility for programs. These categories were first constructed by Congress in 1996 as part of the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) and distinguish between “qualified” and “non-qualified” immigrants for federal benefits purposes. Eligibility for marketplace coverage through the ACA utilized a similar framework, although it first distinguished between “lawfully present immigrants” (which includes both “qualified” and some “non-qualified” categories from the PRWORA framework) and “not lawfully present immigrants.”

“Lawfully Present” Immigrants under the ACA

Under the ACA, lawfully present immigrants included lawful permanent residents (i.e., green card holders), refugees, asylees, Cuban and Haitian entrants, certain victims of domestic violence and trafficking survivors and their derivatives (his/her spouse, child, sibling, or parent), persons granted withholding of deportation/removal, temporary protected status, lawful temporary residents, individuals with nonimmigrant status (including holders of worker visas and student visas), those with deferred enforced departure, and deferred action status (with the exception of Deferred Action for Childhood Arrivals), as well as applicants for any of these statuses. However, not all lawfully present persons were “qualified” persons. For example, nonimmigrants—the official term for students, visitors, and temporary guest workers, who are not legal permanent residents—are categorized as “lawfully present” but were ineligible for benefits under the ACA, including purchasing coverage on the exchanges. Only those who were both “lawfully present” and “qualified” were eligible for exchange subsidies, as well as premium tax credits and cost-sharing tax credits toward plans that met the essential benefits package outlined in the ACA, regardless of how long they have been in the United States.

Furthermore, lawfully present immigrants’ eligibility for Medicaid—a public program—remained restricted under the ACA, with “qualified” immigrants barred for the first five years and those with “non-qualified” statuses (e.g., non-immigrants) barred indefinitely unless their status changed. Lawfully residing immigrant adults who have been in the country five years or less are not eligible for Medicaid coverage (in states that have opted to expand adult Medicaid). However, some lawfully residing immigrant children who have been in the country less than five years were eligible for Medicaid coverage at state option.1 In other words, opportunities for Medicaid coverage for both children and adults varied depending on the state in which they live.

“Not Lawfully Present” Immigrants under the ACA

The Affordable Care Act expressly excluded undocumented immigrants from participating in the federally subsidized state health exchanges and the Medicaid expansion. They were also exempt from the individual mandate requiring insurance coverage or payment of a penalty. The only program for which they qualified—as before—was prenatal care under Medicaid and emergency room care (see chapter by Melo in this volume). They may also receive health care from Federally Qualified Health Centers (FQHCs) and some state and local programs regardless of immigration status. FQHCs are a major source of primary care for populations that remained uninsured through the ACA; however, despite increased funding and bipartisan political support, they struggle with financial self-sufficiency, health professional shortages, inadequate networks of specialists, and low-quality outcomes. FQHCs are only located in one-quarter of the areas designated as medically underserved and provide only limited primary and preventive services. In the past, local for-profit hospitals claimed 10–20% of their annual budgets as uncompensated care and recuperated costs from Medicaid Disproportionate Share Hospital (DSH) funds, Emergency Medicaid, and county indigent programs. However, DSH funds were greatly reduced under the ACA, based on the assumption that there would be an increase in insured patients.

Efforts to limit health care have remained a standard and predictable tool for enforcing immigration control in the United States. In September 2009, when President Obama addressed a joint session of Congress to outline his plans for health care reform that ...