Abstract

Context: American Indian elders have a lower life expectancy than other aging populations in the United States because of inequities in health and in access to health care. To reduce such disparities, the 2010 Affordable Care Act included provisions to increase insurance enrollment among American Indians. Although the Indian Health Service remains underfunded, increases in insured rates have had significant impacts among American Indians and their health care providers.

Methods: From June 2016 to March 2017, we conducted qualitative interviews with 96 American Indian elders (age 55+) and 47 professionals (including health care providers, outreach workers, public-sector administrators, and tribal leaders) in two southwestern states. Interviews focused on elders' experiences with health care and health insurance. We analyzed transcripts iteratively using open and focused coding techniques.

Findings: Although tribal health programs have benefitted from insurance payments, the complexities of selecting, qualifying for, and maintaining health insurance are often profoundly alienating and destabilizing for American Indian elders and communities.

Conclusions: Findings underscore the inadequacy of health-system reforms based on the expansion of private and individual insurance plans in ameliorating health disparities among American Indian elders. Policy makers must not neglect their responsibility to directly fund health care for American Indians.

Although members of all federally recognized American Indian tribes in the United States have a legal right to health care, long-standing inequities in health and health care that are rooted in colonialism persist for American Indians to this day (USCCR 2004). Older American Indians, for example, have a lower life expectancy and are more likely to experience poor health and barriers to care than all other aging populations in the United States (Boccuti, Swoope, and Artiga 2014; Espey et al. 2014; Jacobs, Gallagher, and Heydt 2019). The 2010 Affordable Care Act (ACA) included a number of provisions intended to reduce health disparities among American Indians. One such provision made permanent the 1976 Indian Health Care Improvement Act (IHCIA), which authorizes funding for the Indian Health Service (IHS), the government agency responsible for providing direct medical and public health services to American Indians. The ACA also incorporated measures to encourage insurance enrollment among American Indians, such as unrestricted enrollment periods and the expansion of eligibility for Medicaid—the federal and state program that covers medical costs for many low-income people—to adults at or below 138% of the federal poverty level. In fact, while the IHS remains chronically underfunded by Congress, the increase in insured rates among American Indians is one of the ACA's most significant impacts (Skinner 2016). However, little research exists on the effects of health insurance on the IHS and on American Indian elders, including those who rely on Medicare—the federal program that provides health insurance to adults older than age 65 and some younger people with specific health conditions.

As part of a larger study on health care access and utilization among American Indian elders age 55 and older (Willging et al. 2018), we qualitatively analyzed the perspectives of aging tribal members, outreach workers, health care providers and administrators, and tribal leaders to examine elders' experiences with health insurance. Although IHS and tribal programs have benefited from insurance payments for services provided to newly enrolled users, we show that the complexities of selecting, qualifying for, and maintaining health insurance are often profoundly alienating and destabilizing for American Indian elders and communities. The reliance of American Indian–serving health care providers on insurance also threatens to absolve policy makers of the responsibility to directly and adequately fund the IHS. Ultimately, our findings underscore the inadequacy of health-system reforms based on the expansion of private and individual insurance plans in ameliorating the disparities in health and health care that affect the rapidly growing population of American Indian elders.

Background

The IHS budget pays for health care services provided to 2.56 million American Indians and Alaska Natives via a network of hospitals, tribally run programs, and urban health clinics across the country (IHS 2019). Enrolled members of American Indian tribes who reside within their community's IHS service area have a legal right to receive available health care services at a local IHS facility or tribally run facility at no cost and without health insurance. For services not available at the IHS, patients must be referred elsewhere through the Purchased/Referred Care (PRC) program, depending on eligibility. Services that require such a referral often include dental care, common diagnostic tests, and any care involving a specialist. However, the IHS is not an entitlement program like Medicaid or Medicare. It therefore depends on Congress to appropriate direct funding each year, which has never been adequate to meet the needs of American Indian people. In fact, IHS patients receive less per capita health care funding than federal prisoners and users of Medicaid, Medicare, and the Veterans Administration (VA) health care system (Skinner 2016). Consequently, IHS users commonly encounter outdated health care facilities and truncated service hours. Coverage through PRC often runs short, so funding must be apportioned according to medical priority and has sometimes been limited to those services required to preserve “life and limb” (Fox 2011; Skinner 2016). Although the IHCIA authorizes funding for comprehensive IHS services, including vital programs for elders, such as assisted living, long-term care, and home- and community-based services, funding has never been available to implement them. Tribally run programs, which use IHS funds to administer some or all of their own health care services, can tap into some additional financial resources by applying for grants or reinvesting local resources into their own system. Still, these programs also struggle to cover the costs of all the care their members need (Bylander 2017). As a result of this chronic shortage of funding, IHS and tribally run programs rely heavily on third-party reimbursements from Medicaid and, to a lesser extent, Medicare and other private health insurance (Bylander 2017). Because the IHS operates as the “payor of last resort,” IHS providers can first bill users' public and private health insurance before drawing from the limited IHS budget for their care. Many tribes encourage their members to enroll in health insurance, which also allows them more flexibility in getting care outside their service unit and without having to access PRC funds.

In the interest of closing racial/ethnic gaps in health care access, the ACA's provisions for American Indians specifically centered on the permanent reauthorization of the IHCIA and special rules to increase health insurance enrollment. In addition to unlimited enrollment periods, these included removing all out-of-pocket costs for American Indians enrolled in bronze (i.e., low-premium) plans on the health insurance exchanges (later renamed “Marketplaces”), providing tax credits on premiums paid by tribes for members' health plans, increasing Medicaid rates for American Indian–serving health care providers, and exempting American Indians from the tax penalty for not being enrolled in an insurance plan (i.e., the individual mandate). These measures were intended both to increase reimbursements for IHS and tribal providers and to allow American Indians more flexibility in accessing comprehensive services within and outside the IHS system. Advocates see these as crucial benefits for both reservation-dwelling (often rural) individuals who need extra help getting transportation and services that are not available in their home communities and for urban residents who cannot access PRC funds because they live outside their service unit. However, critics suggest that such measures represent an effort by the federal government to sidestep its responsibility to pay for American Indian health care, undercut the IHS, and shift more money into the private sector (Skinner 2016).

In fact, the vast majority of American Indian elders age 65 and older are enrolled in health insurance, largely via Medicaid and Medicare. Although many states did not expand Medicaid eligibility under the ACA, including several of the states with the largest populations of American Indians (e.g., Texas and Oklahoma), in states that expanded Medicaid, the rate of uninsured American Indian people fell from 23.7% in 2013 to 14.4% in 2018 (TSGAC 2019). These likely included many younger elders (i.e., age 55–64) who became newly eligible for Medicaid. Growing enrollment numbers among American Indians resulted in a welcome influx in funding for IHS and tribal health care providers (Artiga, Ubri, and Foutz 2017; Frerichs et al. 2019; Skinner 2016; Warne et al. 2017), further instantiating third-party reimbursement as an indispensable funding source for health care for American Indians. Still, elders who are not yet 65 (and thus generally not eligible for Medicare) are more likely to be uninsured. While some simply prefer not to enroll in health insurance, many middle-income adults in this age range have trouble finding an employer-sponsored or Marketplace plan they can afford, likely due in part to the ACA's age-rated premium structure (Fehr et al. 2019). Table 1 outlines sources of health insurance coverage for American Indian adults in general and elders specifically.

Yet the process of finding, choosing, enrolling in, and relying on individual health insurance plans to pay for medical care represents a major departure from the way that the majority of American Indians have experienced health care—as a collective, treaty-guaranteed right (Trout, Kramer, and Fischer 2018). Moreover, although the expansion of health insurance is bolstered by an ideology of consumer choice, according to which individuals purportedly benefit from the ability to choose from an array of health insurance plans and providers (Hoffman 2020; Mulligan 2017), many American Indians are deterred from seeking health care outside the IHS by cost, physical distance, or experiences of discrimination, while others simply maintain a personal and/or cultural preference for the local IHS or tribal facility where they and their families have historically gone (Haozous, Rangel, and Burton 2017). The question of whether and how much to rely on health insurance is particularly acute for the rapidly growing population of older American Indian people, who are more likely to need intensive and expensive care as they age (Goins et al. 2007) and less likely to have experience with health insurance than younger people.

Methods

This qualitative analysis is part of a multi-year community-driven study to examine the health care experiences of American Indian elders in two states in the southwestern United States (Willging et al. 2018). The study was conceived and designed at the request of a group of elders and allies who approached the researchers with the concern that elders did not have adequate access to health care and insurance. This group became the Seasons of Care Community Action Board (CAB), which oversaw all aspects of the research. Data were collected between June 2016 and March 2017 as part of the larger parent study.

All participants signed an approved written informed consent document. In accordance with this document, pertinent identifying features (e.g., names, locations of employment, community affiliations) were withheld from the data reported below. The sampling method, research design, and consent procedures were approved by the Southwest Tribal Institutional Review Board. Participants received $25 for their involvement in the study.

Participants

We conducted semistructured in-depth interviews with 96 American Indian elders (age 55 and older) and 47 professionals involved in elder health care. The elders were recruited during regular visits to American Indian senior centers, community health fairs, and meetings of other senior-serving organizations. During these visits, two research team members typically provided a project overview to elders, after which they extended a verbal invitation to take part in a formal interview. We also posted fliers in these settings featuring a toll-free number that elders could call if they were interested in learning more about the project or scheduling an interview. Candidates were eligible to participate if they were age 55 or older and self-identified as American Indian. Although age 65 is often used to delineate older adults as an age group, age 55 is considered a more appropriate threshold for American Indian elders, in part because it reflects elders' reduced life expectancies as a result of the effects of historical trauma and stressful life experiences (Hendrix 2010; Palacios and Portillo 2009).

Most of the elders who agreed to take part in the study were women (70.8%), with an average age of 67 years (range 55–89). All self-identified as American Indian; 17.7% also self-identified as Hispanic. Almost half (47.9%) spoke an Indigenous language as their first language. For education, 27% had a high school diploma/general equivalency diploma or less; 33.3% had some college or vocational training; 22.9% had an associate's or vocational training degree; 9.4% had a bachelor's degree; 5.2% had a master's degree; and 2.1% had a doctoral degree. The elder participants came from more than a dozen tribal backgrounds and resided in both reservation and nonreservation settings, including three urban centers.

We used reputational case selection to identify the professional interview participants. Through this method, we solicited recommendations from our CAB and a state chapter of the National Indian Council on Aging for professionals involved in health care and policy. Our final sample included 10 tribal leaders (e.g., elected officials), 16 national and state administrators (e.g., IHS personnel, government system administrators), 9 health care providers (e.g., physicians and nurses), and 12 outreach workers (e.g., community health representatives, benefits coordinators, insurance company liaisons). The majority were women (59.6%). Ages ranged from 28 to 74, with an average age of 51. Most self-identified as American Indian (63.8%); 27.7% self-identified as Hispanic. The majority (76.6%) spoke English as their first language. For education, 6.4% were high school graduates; 27.4% had some college or an associate's degree; 25.5% had a bachelor's degree; 19.1% had a master's degree; and 21.3% had a doctoral degree. On average, participants had worked at their organizations for 9.6 years, in their chosen occupational field for 19.5 years, and in or with American Indian communities for 20.8 years.

Data Collection

Semistructured qualitative interviews focused on experiences with health care and health insurance among American Indian elders. To interview the elders, seasoned researchers (the first and third authors) were paired with an American Indian elder consultant hired in consultation with the CAB. The researchers were white female anthropologists with advanced degrees. Both had previous experience working on community-driven projects with American Indian communities in the study region to address environmental and health disparities. Eight elder consultants were selected based on language and communication skills, availability, and histories of sustained community involvement, a proxy measure for their likely commitment to the study. Trained in qualitative interviewing techniques, they accompanied the researchers into the field, helped conduct interviews, and provided cultural and linguistic translations when necessary. These in-person interviews were conducted in English, although the elder consultants were capable of conducting the interview in the Indigenous languages of participants who might have preferred that option.

Interviews with elders included a quantitative survey to gather information about demographics, education, health status, socioeconomic status, health insurance, and health care access and utilization. We then used a semistructured interview guide to ask elders a series of open-ended questions about their experiences with and perceptions of wellness, health care, and health insurance, including social, cultural, organizational, and system-related factors influencing their decisions about help-seeking and care, satisfaction with health care, and knowledge of and experience with the ACA, Medicare, Medicaid, and other insurance programs. The majority of the questions about health care and insurance access and utilization focused on experiences in the previous year (e.g., “Have you experienced any problems paying for your care in the last year?”); however, participant responses often covered a much longer time frame. The interviews were typically between 60 and 90 minutes in length and were conducted in a setting deemed private and convenient by the elder, such as homes, private rooms located in senior centers, and a conference room at the researchers' office.

Interviews with professional stakeholders (also led by the first and third authors) consisted of open-ended questions focused on participant work roles and responsibilities; background and experiences working with elders; knowledge of factors affecting health care and health insurance for elders; perceptions of how national and state reforms affect elders; and recommendations for enhancing access to high-quality services and overcoming insurance barriers for elders. Most interviews occurred in person, usually at the participant's place of work; eight were conducted over the phone. The interviews were 45 to 60 minutes in length. All interviews were digitally recorded and professionally transcribed for analysis.

Qualitative Analysis

We employed a constant comparative analysis process to analyze the textual data. Four team members reviewed the transcripts to develop and agree on a coding scheme that highlighted a variety of issues bearing on health care and insurance for American Indian elders from the perspectives of the elders. A second coding scheme was developed for the professional stakeholders who took part in this research, although there was substantial overlap across schemes. We used NVivo 12 to assign codes to segments of text ranging from a phrase to several paragraphs based on the coding schemes. For this analysis, we created additional codes based on key sensitizing concepts related to health insurance (e.g., enrollment, benefits coordination, cost coverage) for both data sets (Patton 2015). We then engaged in open coding to identify and define new codes related to health insurance that we had not previously considered, followed by focused coding to determine which of these themes/issues recurred and/or represented unusual concerns to participants (Corbin and Strauss 2008). By constantly comparing and contrasting codes with one another, we grouped codes from both data sets with similar content or meaning into broader themes linked to segments of transcript text (Corbin and Strauss 2008; Glaser and Strauss 1967). As part of this analytic process, we created matrices comparing key points and representative quotes by participant type (i.e., elders and professionals) as well as a detailed outline describing and linking codes to each theme/issue, and we reviewed this work collectively. Discrepancies in coding and analysis were identified during this process and resolved during team meetings. Summary reports of key themes/issues were shared with the CAB in the form of PowerPoint presentations for interpretation purposes.

Results

As we describe in the following three sections, IHS and tribal health care providers' reliance on third-party billing is a decidedly mixed benefit for American Indian elders. First, although Medicaid expansion resulted in an infusion of new funding for health care providers in states that accepted it, and most elders found that their medical costs were adequately covered by their health insurance plans, elder and professional interviewees agreed that the complexities, ambiguities, and shortcomings associated with health insurance took a significant toll on elders. Second, we found that these problems were aggravated by inconsistent or unreliable outreach on the part of government agencies and health insurance providers. Third, while many tribes worked to smooth over these problems for their members, elders' experiences of health insurance were uneven and fraught with challenges, calling into question the use of health insurance as the preferred method to decrease health disparities in this vulnerable population.

Barriers to Health Insurance Enrollment and Utilization

Elders and professionals broadly shared the view that most people—Native and non-Native alike—were hard pressed to understand the complexities of insurance, regardless of education, literacy level, or profession. For individuals attempting to enroll in a health insurance plan, information about eligibility, costs, and coverage was characterized as “overwhelming” and dominated by intimidating “technical jargon” and “legalese.” Without having understandable materials available to them, elders lacked relevant information for selecting among possible insurance options. The fact that prospective enrollees—some grappling with declines in eyesight, hearing, and cognition—needed computer literacy and access to the internet also posed a barrier to elders' attempts to obtain and understand the information they needed to make informed selections and to complete enrollment processes. Having to interface with technology to get questions answered—not only computers but also automated phone systems in which actual human voices remained elusive—was deemed frustrating by all, but was especially off-putting to older elders, who were widely reported to prefer “face to face” interactions. For example, one elderly woman asserted, “I'm one that will not listen to the recording. I press the zero for operator and I said, ‘I want to talk to a human.’ I don't want to talk to no recorders, so even if I have to wait for five minutes or whatever it takes, I will talk to a human not a recorder.” An American Indian outreach worker further clarified, “That's why they'll [elders] go into these offices and sit there and wait and wait until they see somebody, like [at] Social Security. It's becoming increasingly harder to get their questions answered because [insurance plans] are kind of moving everything through technology.” In addition, many tribes had recently undertaken efforts to educate elders about identity theft and other phone scams, so that elders were widely suspicious of sharing personal information over a computer or the phone, to the point that many refused to talk to anyone over the phone about their health.

Elders' efforts to navigate health insurance options were confounded by the variety of requirements associated with different programs, including Medicare, Medicaid, and the VA. Some options entailed annual or biannual recertifications that presented additional hurdles. One elder recounted receiving a letter from his Medicaid provider that said, “You were late [in recertifying] and were dropped”; when asked if he had followed up to reenroll, he joked, “I don't think so. I'll wait. I'll just quit getting sick.” For elders enrolled in Medicaid or subsidized health plans that they purchased through the state Marketplace, recertifications could be further complicated by fluctuations in their incomes that could make them ineligible for financial assistance. An elder lamented the case of an acquaintance who refused the opportunity to make a little extra money because she was afraid even a few dollars would cause her to lose health and social programs on which she relied:

[A] lot of people want to do something and you feel like, “Well, we can pay you to do that thing,” but then just even five dollars over their limit that they get from their other programs cuts them off and so they would rather not get money or do it. . . . This one lady . . . wanted to be helpful and wanted to work and just giving her a stipend to help her with her gas, if she reports that then it already goes like five dollars over the amount that she's allowed to have as an income. . . . Then they cut her off on everything and it's like, “No, I'd rather not,” so that's really frustrating.

In addition, individuals in state-supported managed care plans that administered services for persons enrolled in Medicaid had to contend with changes every four years or so when state governments entered into contracts with a new set of managed care organizations (MCOs), all of which instituted their own policies, benefits packages, provider networks, referral processes, and procedures for billing services.

Although these difficulties are undoubtedly familiar to individuals of all ages and backgrounds, our participants emphasized that health insurance also posed specific issues for American Indian elders. Many elders, for example, were inexperienced with insurance because they had relied on the IHS for most of their lives. An American Indian health system administrator elaborated:

I've had health insurance all my life. . . . You have to know what your health care benefits are. . . . You go for your health care services and then you pay and you ask questions. But our elders . . . many of us have been brought up on IHS and we've not had a structure like that. . . . Indian people are used to Indian Health Services. I think knowing that you have this other process to contend with, with insurance coverage and knowing who is paying for what and what they're billing for and what is covered and what is not covered and buying additional benefits to cover gas and services . . . sometimes it can be very overwhelming.

As a result, elders who were using health insurance for the first time were sometimes unaware that they needed to seek care within their insurance networks and obtain referrals to access specialty care, lest they run the risk of paying high deductibles and copayments. Even with referrals, it was often difficult for elders to identify health care providers whose services were covered under their plans. An American Indian physician explained:

If they signed up for health insurance for the first time . . . they get this big book, they find all of the providers that are available to them and . . . they have no idea first of all—a lot of the providers are going to be so stupidly far away to make it really difficult. Secondly, there's nothing that's going to be in that book that says the clinics and providers are knowledgeable and comfortable with Natives.

Participants speculated that when elders did find providers who took their insurance, they could become quickly disappointed when pressed for copayments, on top of covering any transportation costs they may have incurred. Several participants described how copayments deterred elders from accessing needed medications and services. As a white pharmacist who worked in an American Indian–serving facility explained, “I've seen many instances where a $35 copay prevents somebody from taking their medication or from even picking it up once they see the price. . . . I know within IHS and tribal health care systems in many cases they're not putting that copay over to the patient, but if it's something that's not on their formulary, it's going to happen when they go into town to get it.” Participants suggested that when IHS was unable to provide medications, elders were likely to do without them rather than struggle with copayments or formulary restrictions under their insurance plans.

Other elders who had spent their lives farming, ranching, or caring for family not only lacked experience with employer-based health insurance but also found that they had not amassed enough contributions to Social Security or Medicare payroll taxes over the years, so that buying into Medicare became prohibitively expensive. Still others expressed the conviction that health insurance was pointless given that health care through IHS was supposed to be a guaranteed right for members of federally recognized tribes, or they feared that having insurance would release the federal government from its obligation to provide care to tribal members. In an exemplary comment, when asked what she knew about the ACA, one elder responded, “Since we're Native Americans, we have care, so I didn't worry about the ACA.”

Furthermore, participants pointed out that health insurance enrollment processes were unsettling for some elders because of the symbolism attached to signed documents. Historically, tribal members signed written documents that were falsely described as offering particular guarantees—such as entry papers into boarding schools or forfeiture of allotment land—and that were ultimately designed to break apart families and assimilate American Indians. As an American Indian outreach coordinator explained:

In my line of work, these are real events where an elder was given stacks of paper to sign and she didn't speak English, but she translated that “You're giving stacks of paper to sign. I don't know, but the last time I was given papers, they sent me off to the boarding school.” . . . To the elders, a lot of the misfortunes of the past still affect them today, so that is why they don't trust very many folks.

Accordingly, many elders found both the principle of having health insurance and the bureaucratic processes associated with it pointless at best and traumatizing at worst.

In addition to these alienating experiences, the American Indian–specific provisions of the ACA sometimes caused additional confusion for elders. For example, although American Indians were exempted from the tax penalty for not being enrolled in health insurance (i.e., the insurance mandate), many elders reported that they were confused by media reports or notifications from the Marketplace stressing that insurance was mandatory, and they were not able to get a clear answer about whether the mandate applied to them. Consequently, some elders perceived the ACA as a threat, with one woman explaining, “What was scary was if you didn't have insurance, that they would penalize you.” Other individuals reportedly ran into trouble when their health care providers were unaware of the ACA provision exempting American Indians in certain health plans from copayments. An American Indian health system administrator emphasized the extra burden this placed on elders to advocate for themselves: “We have to remind them to tell their provider that they're Native American, because some look Hispanic and they'll try to charge them a copay.” Thus, even when the ACA provided elders with the opportunity to enroll in health insurance, they were sometimes deterred from using it by unexpected costs and other difficulties.

Some professional interviewees expressed cynicism about the difficulties that elders faced in utilizing their insurance, suggesting that insurance companies were perversely incentivized to prevent members from accessing services. One American Indian administrator summarized this view: “I've wondered if it has something to do with profitability, like the less people use services the better it is for their profit margin because people are paying the premium but they're not using services. Even with public insurance, the managed care organizations are being paid, but they make more money if people don't use the services.” Elders were considered particularly vulnerable, because they were the proportion of the population most likely to require more medications and complicated, expensive medical procedures, but they were least likely to have the knowledge required to negotiate barriers to these services on their own.

Inadequacy of State and Federal Patient Outreach and Navigation Services after the ACA

In addition to the challenges caused by the complexities of health insurance enrollment and utilization for elders who were often experiencing health insurance for the first time, the health professionals we interviewed emphasized that the promise of the ACA was undermined by issues with outreach to tribal communities. Many participants focused on the paucity and inadequacy of outreach efforts from government agencies to enroll American Indians and elders in insurance plans, arguing that they did not make it easy to get insurance. One American Indian administrator clarified that outreach materials were typically generic and not tailored to aging tribal members: “With the Affordable Care Act, CMS [the Centers for Medicare and Medicaid Services] came up with quite a few marketing materials to encourage American Indians to get health coverage, but you don't really see anything from Medicare that's marketed specifically to American Indian elders.” Participants further observed that enrollment outreach by federal and state agencies under the ACA focused mostly on younger populations, even though most elders younger than age 65 were not eligible for Medicare and were likely candidates for coverage through the Marketplace and the Medicaid expansion. The same administrator observed: “They [federal and state governments] did many targeted campaigns for young people because they lowered the overall cost because they're not using services. They're not an expensive population . . . but in terms of the state, it's very minimal, and the grants from CMS are usually around children, connecting kids to coverage. There's no [campaign] enabling elders to get coverage.” Even the meager outreach and benefits coordination efforts that reached tribal communities in the years after the passage of the ACA disappeared in 2017, when their funding was cut by the newly formed presidential administration of Donald Trump.

At the same time that participants noted the scarcity of outreach from the federal and state government to tribal communities, they also described aggressive efforts on the part of MCOs to enroll tribal members in plans that predated the ACA. Medicare, for instance, offered managed care options called Medicare Advantage plans. These plans were administered by MCOs and were supposed to provide a degree of flexibility in offering services unavailable in traditional Medicare. The MCOs were thus incentivized to hire outreach workers to promote these plans among elders. However, our interview participants claimed that these workers could be “too aggressive” in their sales pitches, trying to sell elders products they may not need while endeavoring to lure them with cheap marketing freebies. One elder woman recalled cautioning other elders in the community to “read this first before you sign it and make sure or wait until you get home and talk to somebody.” Moreover, few MCO outreach workers spoke relevant Native languages, and they depended on interpreters who struggled to make insurance-related jargon understandable to elders. In many cases, the efforts of these MCO representatives were the only form of outreach related to health insurance occurring in the direct presence of elders. For example, when asked how she learned about the ACA, one elder replied, “Just what you hear on the news. I heard about it on TV. Nobody has come out to talk to the seniors about it. People just come out to talk about Medicare.” An American Indian benefits coordinator spoke critically of the sales practices of MCO outreach workers and their potential to exploit elders:

One of the things I find difficult for the elders is when certain organizations or insurance companies come in and talk to them about their own plans, trying to sell it to them without proper interpretation. Sometimes they [elders] fall for it and a lot of these people, especially the insurance agents, will have paperwork on hand for them to sign so [they can] quickly receive their benefits. . . . They entice them with certain things that are not necessary. To me it's just a total loss of respect for them, that they entice individuals: “I'm going to give you this if you sign up for this,” and it's not a good thing when they come in to do that. And a lot of times, they'll [elders] sign up for it and we won't know about it until they come up to the facility [clinic]. We either find insurance or we talk to them and they'll say, “Oh, well, this guy came by to the senior center,” or “They came to my house and they had me sign some paperwork,” and we ask for copies, who the person was, and there's no paper trail.

Because such scenarios were not considered infrequent, elders and tribal leaders were often skeptical of such efforts, perceiving MCO representatives to be “predatory” and “self-serving,” and expressing concerns about potential “scams” targeting elders. For such reasons, tribal leaders were reportedly disinclined to allow MCO representatives to conduct outreach activities in their communities, and some also limited who could engage in enrollment assistance on tribal lands.

Extra Burdens on Tribal Outreach Workers

In the absence of federal or state outreach, tribal communities were largely left to manage the health insurance enrollment of tribal members themselves. For example, in one community, tailored education and outreach efforts were undertaken successfully by a tribal provider organization contracted by the state government using federal dollars to promote insurance enrollment under the ACA. These efforts did not focus on seniors and were short-circuited prematurely by an unsupportive gubernatorial administration. However, two unpaid volunteers from a local elder advocacy organization assumed both the responsibility and the expense of informing elders about the ACA and relevant state policy reforms by organizing and delivering presentations at senior centers on tribal lands throughout the state. When staffed by these volunteers, such efforts were generally appreciated by the elders who attended these events and trusted these individuals based on prior interactions. Nevertheless, the elders often expressed less concern about the reforms that were presented and instead used these opportunities to ask probing questions and receive advice about their own Medicare coverage.

Most often, IHS benefits coordinators and other tribal outreach workers were the ones who worked hardest to enroll elders in health insurance plans both before and after the ACA. Without such assistance, it fell on the elders and their families, if available, to review paperwork and decipher insurance options. Having access to a benefits coordinator or another outreach worker helped alleviate the bureaucratic burden of enrollment, as an American Indian health system administrator explained: “I have to read a lot of the paperwork for them [elders] and interpret it and fill it out and then send it back in. . . . Before you're 65 they [Medicare] send you that card that says, ‘If you're interested in Part B check off here and send back.’ You don't know how many times I have to do those cards for people. They just aren't sure or they just don't understand or know what it is.” Similarly, an American Indian benefits coordinator described her process for working with elders, emphasizing the need to set aside time to familiarize elders with the fundamentals of their insurance:

Usually when I deal with the elder they often ask, “Well, what do I have?” So, I ask them to bring their package, all their health insurance and cards and then I sit with them and [say], “Do you see the red, white, and blue card? That's the Medicare. If it's just a blue card, that's the state Medicaid, and if you have a Blue Cross Blue Shield from [workplace insurance] that means that you're still covered under that.” So, I explain the prescription, if they have vision, but if they don't get an explanation then they don't know what the services are or what the benefits are. . . . So, I explain to them, I read out the whole letter and I try to translate it for them to understand it, then we do the role play, then I make sure that they understand what we're talking about. Most of the time it's just making time for them, just going over the whole health insurance.

For their part, elders also emphasized their reliance on these outreach workers to help them sort out their health insurance. When asked how they had signed up for their current health insurance plan, elders most commonly indicated that they had done so with the help of someone at their IHS clinic or another social service agency, such as the Social Security office. In one representative comment, an elder woman recalled seeking in-person assistance after struggling to sign up for a new health insurance plan online: “I tried it and I got about halfway through but then I didn't understand it, so I went to the clinic and the receptionist made me an appointment with someone from [area] IHS. She got me into Medicare and Social Security.” However, the quality of assistance from coordinators was characterized as variable across tribal communities, as they had to maintain awareness of eligibility requirements and enrollment processes for multiple public programs at both federal and state levels. An American Indian administrator described the challenges coordinators were up against: “Navigating Social Security and Medicare and Medicaid and all those things, it's not easy. . . . You really need to have someone that knows what they're doing, is well trained, and also persistent, because the other thing that happens is the issues become complicated and it's just going nowhere and people start to give up.”

Because no two public programs were alike, participants said it was not uncommon for benefits coordinators to have “specialized” knowledge of one or two programs but not necessarily all programs. An American Indian outreach worker commented, “Another outreach worker is the lady who takes care of the VAs. If I have a question, I go to her. If I'm not too sure and I don't have the answer, I know where to go and at least get information, and then I come back and explain it to the elders.” However, having specialized benefits coordinators on site in IHS facilities was not the norm, given budget constraints on staffing.

Moreover, a few participants suggested that some coordinators did not keep up with the latest health insurance resources, resulting in the circulation of outdated or inaccurate information about Medicare and health plans to elders. Others shared the perception that their local coordinators picked and chose which elders to assist, essentially playing favorites. They also contended that some benefits coordinators discouraged elders from signing up for Medicare Advantage Plans as well as Medicare Part B, which covers outpatient services but requires a copayment, based on the rationale that patients could access such services at no cost through the IHS and PRC system. In sum, while elders relied heavily on the assistance of tribal outreach workers to make sense of their health insurance, this assistance varied widely from community to community and depended entirely on the resources and staff that individual tribes were able to dedicate to these efforts.

Discussion

Many of the struggles and ambiguities associated with health insurance that our interview participants described are experienced by US citizens of all ages and backgrounds. In our study, the expansion of new health insurance options offered by Medicaid and the Marketplace under the ACA were often accompanied by a proliferation of bureaucratic complexities—a process familiar to researchers of health system reform (Jaramillo and Willging 2021; Joseph 2018; Lopez 2005; Mulligan and Castañeda 2018)—which elders experienced as confusing, burdensome, and alienating. Scholars have documented how such complexities are inextricably tied to the ideology of consumer choice that underpinned the passage of the ACA (Hoffman 2019, 2020). In our findings, these complexities may have been especially common because of excessive turbulence in the Marketplace (e.g., plan turnover) when these interviews were conducted in 2016 and 2017. Still, research has extensively documented how burdens of time and attention, such as those associated with understanding, selecting, and using health insurance plans, tend to be especially heavy for people who need public programs like Medicaid and who often lack the resources required to overcome bureaucratic impediments, such as American Indian elders (Herd and Moynihan 2018). The resulting discouragement that reportedly deterred many elders from using their health insurance is what anthropologist Leslie López (2005) has named “de facto disentitlement.” Moreover, such experiences undercut public support for programs like Medicaid by contributing to the perception that they are ineffective (Graeber 2015; Herd and Moynihan 2018) or that users are not responsible enough to deserve them (Andaya 2018; Watkins-Hayes and Kovalsky 2016).

Our findings suggest some methods to improve elders' ability to understand and use health insurance to meet their health care needs within the current health system. Most importantly, state and federal governments can fund tribal benefits coordinators and patient navigators. In our study, when such personnel were knowledgeable and well-trusted within their community, they reportedly provided the most effective guidance to elders. Such culturally congruent navigation services, which have been shown to be successful and well received (Burhansstipanov et al. 2014), are imperative given that American Indians have not historically used health insurance. Importantly, cultural congruence in this case must include linguistic competence as well as an understanding of the structural vulnerabilities that make enrolling in and using health insurance difficult for elders, including the legacies of colonization and present-day educational, socioeconomic, and political inequities affecting elders (Metzl and Hansen 2014).

However, our findings also highlight the importance of questioning a reliance on health insurance as ostensibly the most effective method of reducing health disparities among American Indians. Participants in this research described several ways in which efforts to enroll all American Indian people in health insurance have in effect created a hybrid insurance/IHS system in which large numbers of American Indians continue to rely on the IHS for health care, while the IHS relies on health insurance to subsidize the services it provides. The implications of this system are mixed for tribes, health care providers, and elders. Notably, the push to enroll tribal members has involved new stakeholders with little or no knowledge of American Indians, such as insurance company representatives who may not know how to help elders choose the best options for themselves or who are limited in the advice they are allowed to give. Similarly, even the American Indian–specific provisions in the ACA and tribal efforts to provide navigation services sometimes created new obstacles for elders when they could not trust that health care providers or benefits coordinators were knowledgeable enough to help them. These challenges were only deepened when funding for outreach and navigation for the Marketplace were cut by the Trump administration in both 2017 and 2018 (Brooks 2018). The ways that different tribes managed enrollment efforts in this vacuum sometimes depended on the other financial resources they had available, such as gaming revenue, opening up the possibility of significant differences between tribes. Ultimately, our research participants emphasized the extent to which elders' experiences of health insurance both within and outside the IHS, and both before and after the passage of the ACA, depended heavily on the presence of advocates within the health care system who had specialized knowledge, interpersonal and linguistic skills, and an ethical commitment to translate the bureaucratic complexities of health insurance plans into actionable information for elders.

Significantly, the use of third-party reimbursement is a crucial source of funding for tribal health care providers, a phenomenon that only became more common in states that accepted the Medicaid expansion (Frerichs et al. 2019; Warne and Frizzell 2014). This windfall has made it easier for elders to get services that were out of reach before the ACA, such as substance use treatment. However, the Trump administration's aggressive efforts to repeal, limit, and undermine Medicaid highlighted how this funding arrangement is insecure and subject to shifting political winds and challenges to tribal sovereignty, revealing that it is not an adequate replacement for direct financing of health services for American Indians. In this way, the promises of the ACA to reduce health disparities for American Indians are undermined by this population's vulnerability to the political will of Congress to provide funding (Michener 2020), leaving tribes to rely on health insurance alone to meet members' needs. At the same time, recurrent political threats to Medicaid and the ACA, such as those leveled by the Trump administration and congressional Republicans, have compelled tribes to fight to keep this deeply inadequate arrangement (Skinner 2016).

Ultimately, reliance on third-party reimbursement to fund American Indian health care represents an abandonment of the federal government's trust responsibility to American Indian people, which, as health policy scholar Daniel Skinner (2016: 48) notes, “is only as meaningful as the material support that underpins it.” Moreover, any solution to American Indian Elder health disparities that does not directly fund the IHS disregards the fact that the vast majority of American Indian elders have historically accessed care through the IHS and that many still prefer to access care this way. Rather, efforts to improve health equity for American Indian elders must focus on the specific circumstances and vulnerabilities of American Indian people. Interventions based on a “rising tide” method of improving health that seeks to enhance health care access for all people, such as the expansion of health insurance under the ACA, are not enough to address the specific history and present reality of racial inequity that affects the health and well-being of American Indian people (Coates 2017).

Conclusion

Despite the advances in health insurance enrollment among American Indian elders after the passage of the ACA, our findings suggest that the use of health insurance to reduce health disparities for this severely underserved group is not only inadequate from a racial justice perspective but also is out of touch with the fact that many American Indian elders prefer to access care through the IHS. In future rounds of health reform, rather than further hybridizing the IHS with private health insurance, legislators must focus on strengthening the IHS and meeting their trust responsibility to American Indian people.

Acknowledgments

The authors would like to thank Roxane Spruce Bly and Erin Debenport for their assistance in developing the qualitative coding scheme used to analyze the data described in this manuscript. We also thank the Seasons of Care Community Action Board and Erik Lujan for their generous contributions to the research design and the interpretation of the findings presented here and the tribal nations, communities, organizations, and professionals who supported this work.

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