US public charge policy and Latinx Immigrants’ thoughts about health and healthcare utilization

Abstract

Objectives:

We examined Latinx immigrants’ perceptions of US policy related to restrictions on immigrants’ use of public resources and their thoughts about the influence of these on immigrants’ healthcare utilization.

Design:

A series of 16 focus group discussions with Latinx immigrant men and women (documented and undocumented) (N=130) were conducted between May and July 2017 across four US cities.

Results:

Four central themes emerged: participants attributed the limited resources available for affordable healthcare for many uninsured US immigrants (both documented and undocumented) to the US government’s view of immigrants as burdens on public resources and its subsequent unwillingness to dedicate funds for their care; participants expressed concerns, some unfounded, about negative immigration ramifications arising from diagnosis with health conditions perceived to be serious and/or expensive to treat; participants noted that some immigrants avoided using health programs and services to which they were entitled because of immigration concerns; finally, participants described how access to information on immigration laws and healthcare resources, and conversely, misinformation about these, influenced healthcare utilization.

Conclusions:

Participants were acutely aware of the image of immigrants as public charges or potential burdens on government resources that underlies US immigration policy. In some cases, participants came to inaccurate and potentially harmful conclusions about the substance of laws and regulations based on their beliefs about the government’s rejection of immigrants who may burden public resources. This underscores the importance of ensuring that immigrants have access to information on immigration-related laws and regulations and on healthcare resources available to them. Participants noted that access to information also fostered resilience to widespread misinformation. Importantly, however, participants’ beliefs had some basis in US immigration policy discourse. Law and policy makers should reconsider legislation and political commentary that frame self-reliance, the guiding principle of US immigration policy, in terms of immigrants’ use of publicly funded healthcare resources.

Introduction

Immigrants’ limited access to health insurance is widely recognized. (Philbin et al. 2018; Chang et al. 2019; Tolbert et al. 2020) In 2019, an estimated 40% of US Latinx immigrants did not have health insurance. (Kaiser 2021) Many immigrants do not receive employment-based health insurance and may not be eligible for subsidized health insurance through public insurance exchanges. (Buchmueller et al. 2016; Joseph & Marrow 2017; NCSL 2017; Tolbert et al. 2020). Further, a sizeable number of US immigrant families live below the US poverty threshold. The expense of private health insurance can make it virtually inaccessible to them. (Batalova 2021) Lack of access to affordable health insurance also appears to cross immigration documentation status lines. While nearly half of all undocumented immigrants do not have health insurance (46%), one-quarter (25%) of those who are documented are also uninsured (Kaiser 2021). For comparison, an estimated 10.9% of the US population as a whole was uninsured in 2019. (Tolbert et al. 2020)

The high cost of medical care in the US, when coupled with immigrants’ limited access to health insurance, often leads uninsured immigrants to postpone care until their medical needs are dire. (McMorrow et al. 2015; Goozner 2019; Tolbert et al 2020) Postponed care creates missed opportunities for disease prevention and for management of conditions that if left untreated can cause disability and ultimately may require more intensive and expensive treatment. (Sun & Smith 2015; Rochlin et al. 2020)

US public charge policy

There is little agreement about the definition of ‘public policy’, but virtually all definitions refer to official laws and regulations promulgated to address a particular issue or problem. Many also refer to the principles upon which these laws and regulations are made. (Longest 2016; Smith et al 2018) US immigrants’ eligibility for publicly funded social services is one of these highly contested issues. (Thompson, 2018) US immigration policy, and the laws and regulations informed by this, are a focal point for this controversy.

Policy restricting US immigrants’ use of government resources is longstanding. (USCIS 2021) From the nation’s first general immigration law in 1882 (22 Stat. 214; 8 U.S.C.) to the present, US laws and regulations provide that immigrants who are or may become dependent on US government for their subsistence may be ‘inadmissible’ or ineligible to immigrate to the US, or if already residing in the US, may become “removable” or subject to deportation. A 1996 congressional policy statement outlined the grounds for this position:

• (1)Self-sufficiency has been a basic principle of United States immigration law since this country’s earliest immigration statutes.
• (2)
  It continues to be the immigration policy of the United States that—

  • (A)
    aliens within the Nation’s borders not depend on public resources to meet their needs, but rather rely on their own capabilities and the resources of their families, their sponsors, and private organizations, and
  • (B)
    the availability of public benefits not constitute an incentive for immigration to the United States… 8 U.S.C. 1601 (1-2)

The rationale behind restrictions on immigrants’ use of public resources reflects longstanding concerns about immigrants becoming ‘public charges’ or burdening the US government by relying on public resources to meet their subsistence needs. (USCIS 2019) This policy statement not only presents the foundational principle of self-reliance that underlies US immigration policy, it also reflects an image of immigrants choosing to depend on public resources rather than seeking their own. Indeed, the policy statement suggests that some individuals may be motivated to come to the US to take advantage of the country’s largess. The term ‘public charge’ has therefore come to signify at least three things: a formal US policy position; the laws and regulations that operationalize this policy; and an image of immigrants as potential burdens on government resources. (Strauss, 2013)

There are several notable examples of legislation enacted in furtherance of US public charge policy. In 1996, the Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) (63 FR 41658) became law. In part, PROWORA limited or withdrew eligibility for public assistance programs for documented immigrants to whom it applied and instituted a 5-year ban on new permanent residents’ use of some public assistance programs. The Act characterized the restriction of public benefits for immigrants as a “compelling government interest”. (US Budget Counsel, 1996) This legal standard is used to describe the nation’s most critical, “essential” priorities. (Miller, 2018) A companion Act, the Illegal Immigration Reform and Immigrant Responsibility Act (IIRIRA) (Pub.L. 104–208 (10 Stat. 309)), included provisions that made legally enforceable the requirement that certain immigrant groups prove that they have sufficient resources to support themselves and their families while in the US. The Act also strengthened mechanisms to prevent undocumented immigrants from entering the US and to identify those already residing here.

Due to confusion about the factors that should be considered when designating an immigrant as a public charge (USCIS 2019), a 1999 proposed immigration rule provided a definition of the term. (64 FR 28676) The proposed rule defined ‘public charge’ as an immigrant who is or is likely to become reliant on the US government for subsistence as evidenced by “…either (i.) the receipt of public cash assistance for income maintenance or (ii.) institutionalization for long-term care at government expense”. Although the proposed rule is quite circumspect and applied infrequently (USCIS 2019), immigrants who are designated as public charges are inadmissible or deportable. Though the 1999 rule never became final, its definition of public charge was incorporated into US immigration field guidance (64 FR 28689). In 2019, an amended public charge rule (84 FR 41292) greatly expanded the 1999 definition of public charge (84 FR 41292) and replaced the 1999 provision. After a series of court battles (USCIS 2019), the 2019 amended rule came into effect in the Fall of 2020. The 2019 rule was subsequently vacated in the Spring of 2021 and the1999 guidance was reinstated (86 FR 14221), thus the 1999 definition of ‘public charge’ is being applied today.

Restrictive immigration policy as a deterrent to healthcare utilization

Numerous public health commentaries have presented serious concerns about the potential for restrictive immigration provisions to prompt immigrants to avoid seeking healthcare in the US. (Katz & Chokshi 2018; Perreira et al. 2018; Bovell et al. 2019; Page et al. 2020;) Results of research on immigrants’ utilization of services after the enactment and/or effective date of particularly restrictive legislation have suggested that these concerns are valid. (Berk 2001; Hagan et al. 2003, Bernstein et al 2019; Bernstein 2020; Yu et al 2020; Wang et al 2021)

Hagan and colleagues (2003) noted declines in health clinic attendance immediately after the effective date of PRWORA. This decline in service utilization was seen even among those who continued to be eligible for services. In 2017, after an Executive Order describing an initial version of the 2019 amendment to the public charge rule was circulated in unapproved draft form (US Office of the President, 2017), researchers also noted declines in immigrants’ utilization of public programs and services. (Bernstein et al. 2019; Bernstein et al 2020; Tolbert et al. 2019) For example, researchers found immigrants in Texas opting not to reapply for Medicaid because of concerns over citizenship opportunities. (Bernstein et al. 2020; Bernstein et al. 2019) The researchers also noted that a subset of immigrant parents had stopped taking their ill children to public agencies or hospitals for healthcare due to a fear of their personally identifying information being shared with local and federal officials. (Bernstein et al. 2020; Bernstein et al. 2019) Notably, the Executive Order was in unapproved draft form when it was circulated and thus these deleterious consequences emerged well before the rule was even finalized. Once the rule became effective in all US states, additional research revealed that the immigrants were still hesitant to seek publicly funded services including Medicaid and that declines in healthcare use persisted. (Urban Institute 2020)

Knowledge gaps

Despite evidence of the chilling effect of restrictive immigration policies, including laws and regulations, on immigrants’ willingness to utilize publicly funded healthcare, few published studies have directly examined immigrants’ beliefs about the immigration ramifications of using government-sponsored health services. These beliefs represent an important link between policy and behavior. (Galletly et al. 2019) The present study examined Latinx immigrants’ perceptions of US policy related to restrictions on immigrants’ use of publicly funded services and their thoughts about the influence of these on immigrants’ utilization of publicly funded healthcare.

Methods

The purpose of the focus groups was two-fold: to expand our understanding of US immigrants’ perceptions of US immigration policy and the influence of these on immigrants’ utilization of health-related services and to identify overarching survey topics to be addressed in a subsequent quantitative portion of the study. (Lechuga et al. 2018) A series of 16 focus groups (N=130) were conducted between May and July 2017 as part of a larger study of the influence of actual and perceived immigration-related laws on US Latinx immigrants’ willingness to utilize, and actual utilization of, services for HIV testing and for two drivers of HIV infection—alcohol and drug use disorders (SUDS) and intimate partner violence (IPV). Interviews also included questions about the availability of affordable healthcare for US immigrants and the US government’s provision of resources for immigrants’ care. The Internal Review Board of the first author’s institution approved all study procedures and materials.

Setting

Participants were drawn from four US metropolitan areas representing diverse immigration environments: Chicago, IL, Los Angeles, CA, Phoenix AZ, and Raleigh, NC. The focus groups were conducted in private rooms at sites familiar and accessible to area Latinx immigrants.

Recruitment and participants

Participants were recruited through word-of-mouth among research team members’ professional networks, through flyers posted in places frequented by Latinx immigrants (e.g., ethnic markets, restaurants, community centers), and through referral by other participants. Recruitment locations were varied in order to reach diverse groups of Latinx immigrants. For example, flyers were distributed at universities, places where day laborers gathered, and in neighborhoods where immigrants from specific Latin American countries (e.g., Mexico, El Salvador, Argentina) resided.

Study recruitment flyers generally described the focus group opportunity and directed interested persons to contact study staff at a phone number provided to be screened for eligibility. Names and other personally identifying information were not collected during participant screening or scheduling. (See below.) Eligibility criteria were: being at least 18 years old; being a non-citizen Latinx immigrant (documented or undocumented); living in the US for at least six months (in order to become familiar with the local law and policy climate); and willing to participate in a confidential focus group discussion in Spanish. No additional criteria were applied.

Our sample comprised 130 participants—25 persons participated in Chicago, Il, 34 participated in Los Angeles, CA, and 35 and 36 participated in Phoenix, AZ and Raleigh, NC respectively. In total, 58 self-identified men and 72 self-identified women participated. On one who called to be screened, whether eligible or ineligible, identified their gender as non-binary. (See Table 1.)

Table 1.

Number of Participants in Focus Groups by Location and Group (N=130)¹

	Chicago, IL	Los Angeles, CA	Phoenix, AZ	Raleigh, NC
Women’s Group 1	7	9	12	8
Women’s Group 2	5	11	10	10
Women Total	12	20	22	18
Men’s Group 1	6	9	4	8
Men’s Group 2	7	5	10	9
Men total	13	14	14	17
Total participants	25	34	36	35

¹Focus groups were conducted in Spanish between May and July 2017 across four US cities. Participants were foreign-born, non-citizen, Latinx immigrants, both with and without immigration documentation. Due to the sensitive nature of discussion topics, sperate groups were conducted for self-identified women and men. No individuals identified as gender non-binary during screening.

Given the highly contentious US immigration environment occurring when we conducted the focus groups, and given immigrants’ heightened immigration enforcement concerns, our community advisors recommended that we not collect sociodemographic data from participants, including participants’ documentation status, lest we deter participation or prompt concerns within communities about the use of study data. We followed this advice and thus limited the demographic data collected to only that which was necessary to establish participant eligibility and to assign eligible persons to appropriate focus groups.

Procedures

Two bilingual facilitators conducted each focus group with a total of ten facilitators conducting the focus groups. Due to the sensitive nature of the larger study’s topics, including HIV infection and IPV, separate focus groups were conducted for self-identified men and women. The focus groups were conducted in Spanish.

Again, given the tumultuous US immigration climate when the focus groups were being conducted, procedures were developed to protect participants’ confidentiality. Participants’ names were not recorded during focus group screening or scheduling and participants were encouraged to avoid using their own or others’ formal names during discussions. Because the only document linking a participant to the study would be signed consent form, the Institutional Review Board waived the requirement that signed consent forms be collected. Participants received consent forms but did not sign them or return them to study staff. To further protect participants’ confidentiality and privacy, only eligible participants were informed of when and where their focus group would be conducted.

Because screening and scheduling procedures were anonymous, a process was developed to ensure that all persons who arrived to participate in a focus group had been screened and met eligibility requirements. This prevented, for example, friends or family members invited by eligible participants from joining the group although they had not been screened for eligibility. To accomplish this, eligible individuals created four-digit codes when they were scheduled for a focus group. They presented this code to the group’s facilitators upon arrival at the focus group. The facilitators then cross-referenced the code against a list of participant codes provided to them.

The focus group discussions themselves were semi-structured. Discussions began with a series of open-ended questions on topics related to immigrants’ use of public services for HIV testing, SUDS, IPV, and general healthcare. (e.g., “If an immigrant were experiencing […] and believed that it was a significant problem, why might they still not seek help?” The questions did not direct participants to consider any particular immigrant group such as immigrants who were undocumented or uninsured. The last third of the focus group interviews was more structured in order for us to identify salient topics to be addressed in a measure to be developed for a subsequent quantitative portion of the study. Representative questions for this portion included “What does the term […] (‘public charge,’ ‘moral character requirement,’ ‘official discretion’) mean to you in immigration terms?”

At the conclusion of each focus group, facilitators conducted a debriefing presentation to provide information on relevant immigration laws and regulations. Participants were also given a debriefing brochure that summarized this information and contained a list of relevant organizations in strategic areas within each city that provided information, services, and assistance to Spanish speakers. Participants received $50 after the focus group discussion and debriefing presentation.

Data analysis

Focus group discussions were audio-recorded, transcribed verbatim in Spanish, and then translated to English. A professional service was used for transcription and translation. Any incidental identifying information shared within the groups (e.g., names) was redacted. Dedoose online qualitative data analysis platform (SocioCultural Research Consultants, n.d.) was used to facilitate coding and data analysis among team members who were geographically distant.

Data analysis followed inductive and deductive approaches. A preliminary codebook was developed with codes reflecting themes identified during an initial review of the transcripts, topics being considered for inclusion in the subsequent measure (Lechuga et al. 2018; Galletly et al. 2019), and primary and secondary legal sources relevant to laws and policies in each metropolitan area. A penultimate set of codes was developed through discussions among research team members. Lists of coded excerpts were then downloaded and examined for further exploration and refinement. Two persons coded each transcript with five persons total participating in transcription.

Results

Four central themes emerged from the focus group discussions. Participants attributed the limited resources available for affordable healthcare for US immigrants to the US government’s view of immigrants as burdens on public resources and its subsequent unwillingness to dedicate resources for their care. Participants also expressed concerns, some unfounded, about potential negative immigration ramifications arising from diagnosis with health conditions perceived to be very serious and/or expensive to treat. Participants noted that some immigrants, both documented and undocumented, avoided using health programs and services, even those to which they were entitled, because of immigration-related concerns. Finally, participants described how access to accurate information on immigration laws and on resources available to immigrants both empowered immigrants to seek quality healthcare and fostered their resilience to misinformation. Despite variations in immigration policies across the four metropolitan areas, these themes emerged in focus groups in each city. Below we describe the themes and provide illustrative quotes.

The US government’s assumptions about immigrants as burdens and unwillingness to dedicate resources for immigrants’ healthcare

When asked what the phrase ‘public charge’ meant to participants in immigration terms, virtually all participants referred to their belief that the US government perceived that immigrants were burdens on national resources. As one participant explained about the term ‘public charge’ as applied to healthcare ‘… that’s what they [healthcare personnel] call us ... ‘a burden for their government.’ (Chicago Female Group 1) Another participant described the term in much the same way when referring to immigration authorities’ view of immigrants who are ill. To the participant, the term ‘public charge’ meant ‘being a burden for the state…for your treatment.’ (Raleigh Male Group 2) Another participant believed that while the term referred specifically to immigrants who receive public assistance, in actuality, all immigrants are seen as burdens:

Oh, well, usually they say it to people who do receive help [public assistance] …but they generalize this to all immigrants. (Los Angeles Male Group 1)

Some participants believed that the care available for uninsured immigrants was limited and of poor-quality and attributed this to the US government’s reluctance to dedicate funds for immigrants’ care. Commenting on the lack of resources for affordable healthcare for immigrants, one participant summed up this perspective ‘They [the government] don’t want to spend on you.’ (Chicago Female Group 2)

In an exchange between participants in another group, a participant commented on the US government’s restriction of funds to support healthcare for immigrants. In her experience, resources for affordable healthcare for immigrants are available through charitable organizations but not through the US government. She noted wryly that while immigrants are ineligible for government-funded care, the government still collects taxes from them.

P1: There are charities … that one can apply to, and based on an income table they tell you, “You qualify for 80% - 50% - 100% [reduction]”.

F: There are clinics in the community that have a discount ...

P1: Yes.

F: ... that are funded?

P1: Yes. But with charitable donations, not with federal [funds]. They [the government] do not give one anything.

P2: Yes, ha ha.

P1: On the contrary you have to give when you do your taxes.

P2: Yes.

P1: There they do not ask us, “Are you an immigrant? [Then] you do not pay.” (Chicago female Group 1)

The participant is referring to the fact that, contrary to a common assumption, many immigrants, including those who are undocumented, pay US taxes. (Nadadur 2007)

Several participants believed that the unwillingness of the US government to provide funding for healthcare for immigrants resulted in what they characterized as immigrants receiving under-resourced and inadequate care. A participant shared her experience when attempting to seek care for her uninsured and undocumented son’s mental illness. She explained that while US hospitals are required to treat all persons whose conditions are life threatening, only minimum care is provided. In this case, her son was treated until he was no longer a danger to himself or others. His underlying condition was not treated:

I mean, they [hospitals] accept you, but in two days they throw you out. “And we [the hospital] already fulfilled our legal duty of supporting anyone who is in danger,” but after two days they throw you out. (Raleigh Female Group 1)

Here, the participant shared that the care that was provided was the minimal legally allowed and inadequate in practice. Further, although emergency medical treatment is not intended to address long-term, chronic conditions, participants identified hospital emergency departments as dependable sources of care.

Another participant expressed a similar sentiment about emergency Medicaid, which is often used to reimburse hospital costs when an uninsured individual is treated for a serious medical emergency:

…But there are also limitations, even if you are an immigrant and apply for Emergency [Medicaid]. You have an accident, you go to the hospital, and it covers the emergency, but for how many days? Just a month ago I met a person who had an accident. They had him [in the hospital] for three days, and they said, “This is as far as your Emergency [Medicaid] covers, only three days. We have to discharge you”—still with his guts almost out. What now? Because you don’t have money to cover for hospital expenses, because that’s all Emergency [Medicaid] covers. (Chicago Female Group 2)

Another participant described similar circumstances when her mother was released from the hospital virtually immediately after a hysterectomy. Her description of her experience with her mother was particularly telling:

P1: Well once they operated on my mother. They removed her uterus and they almost wanted to remove her from the [hospital] room that very same day, and I almost did not arrive in time. They had just operated on her and she’s still under anesthesia and I had to hurry there to get her, but they kick them out like that, all dizzy.

P2: Yes.

P3: Yes.

P4: That to me is very ugly. Like you’re not worth anything. That’s the truth. You really are not worth anything. (Chicago Female Group 1)

Participants described a US government and healthcare system that considers all immigrants to be potential burdens and is unwilling to dedicate resources for immigrants’ healthcare. This restriction of resources resulted in uninsured immigrants receiving inadequate care and having limited access to necessary aftercare services.

Communicable and manageable health conditions associated with negative immigration ramifications

A fundamental public health strategy is to encourage utilization of basic healthcare, especially for the diagnosis and treatment of communicable diseases and/or conditions where early diagnosis and treatment can prevent more serious and more costly illness. (Sun & Smith 2015; Rochlin et al. 2020) Yet participants associated diagnosis and treatment of even common, manageable conditions with serious negative immigration consequences. This was true even when the conditions they referred to were either not relevant in immigration terms (e.g., HIV infection, diabetes) or were not a basis for inadmissibility if no longer active (e.g., tuberculosis). (USCIS 2021)

When asked if there were specific health conditions that might limit an immigrant’s immigration options based on public charge grounds, one participant offered the example of HIV/AIDS and reasoned ‘It [HIV/AIDS] is a burden [to the government] because it is a very bad disease.’ (Los Angeles female Group 2) Yet infection with HIV is no longer relevant in immigration terms. (Global Institute 2011) Similarly, when asked about health conditions that might disadvantage an immigrant’s immigration options, participants in another group suggested that cancer (again incorrectly) and HIV infection could be disqualifying conditions:

P1: Cancer, some serious tumor. Some serious tumor that needs big surgeries.

P2: Aha.

F: How about HIV?

P1: It’s also a problem.

F: Why would it be a problem?

P2: Because medicine is expensive for the disease.

P1: It is a chronic disease that goes for life as well. (Chicago Female Group 1)

Although participants were aware that HIV infection is now a chronic, manageable condition, they believed nonetheless that having cancer or HIV would jeopardize their immigration prospects based on the infected person’s potential burden to the government for healthcare.

A participant in another focus group believed that having diabetes could result in a public charge determination by immigration officials based on the expense of managing the disease. This is also incorrect. Again, responding to the question of whether there were health conditions that might prevent immigrants from adjusting their immigration status, the participant said,

P: Yes, I think like diabetes, right?

F: Diabetes? Okay.

P: It is a disease that is very expensive to treat.

F: Okay. So, you think that can harm the prospect of becoming a resident or a citizen?

P: Yes, because they are already are, or will become, a burden… (Raleigh Male Group 1)

Immigrants are routinely tested for communicable health conditions such as tuberculosis. Two participants shared the belief that conditions for which immigrants are tested when petitioning for immigration status advances would cause their petitions to be rejected based on a potential public charge determination:

P1: You cannot deny it if you have HIV and if you have tuberculosis. I heard that. My sister-in-law became a citizen and says that they [USCIS officials] told her.

P2: Yes, they ask you questions, and you do [medical] tests, and all that, and if you have that, they will not give you your residenc[y] for that.

P3: You are not eligible.

P1: But it will be because they do not want to carry you, or the costs.

P2: Of course. Because you are a public charge. (Phoenix Female Group 1)

As these quotes illustrate, immigrants considered a range of health conditions as possible causes for a public charge designation. They based this conclusion on the burden to the government presented by the cost of their care.

Of particular concern was that some participants described healthcare providers themselves notifying USCIS when an uninsured and undocumented immigrant required costly care. Participants believed that providers did this rather than assume the cost of the immigrant’s care. A participant shared a story about an undocumented immigrant woman who was hospitalized:

There was a recent case, in recent years, I think about five years. There was a case of a Central American person, a woman, who was in the hospital for several days, and they [the hospital] told her that they had to transfer her to keep helping her, and they returned her to her country…so because she was already a lot in indebted and not aware, they took her out. (Raleigh Male Group 2)

A participant in a different focus group shared a similar belief:

P1: For example, people who have cancer problem. They have been long time in a hospital. For them [the hospital] it is a burden because they are not paying anything. For them [the hospital] it is better to speak to immigration [officials] and say...

P2: …Yes, it is true.

P1: “...Here we have an immigrant, let’s go.” This has happened. They have been taken out of the hospital to send them to Mexico because it is a burden on them [the hospital]. (Chicago Female Group 1)

Here the participant believed that the hospital notified immigration officials that a patient was undocumented and effectively initiated removal (deportation) proceedings rather than provide care.

A participant in another focus group commented that healthcare centers will also notify immigration officials when an undocumented immigrant needs costly care. Again, the participant believed that healthcare representatives do this because of the burden the immigrant may place on resources:

Yes, that too happens in the health centers, that if you arrive with an advanced illness and you do not have documents, they will deny treatment and report you to be deported and you are going to die in your country, because this country does not want you to be a public burden. (Los Angeles Female Group 1)

The belief that healthcare representatives will notify immigration services to initiate deportation of an uninsured, undocumented immigrants was an important extension of concerns about the US government’s rejection of immigrants whose healthcare needs may be a burden on public resources.

Avoidance of healthcare

Considering participants’ perceptions of the severity of potential immigration consequences arising from utilizing services and being designated as a public charge, it was not surprising that several participants shared stories of immigrants who avoided seeking health services. As one participant shared:

… I know of [cases] where people do not want to go to the doctor because later they will be in the system, like they depend on the government, and are the first to be expelled [deported]. (Raleigh Female Group 2)

A participant in another focus group who worked in an organization that served immigrants shared that there were immigrants who were enrolled in Medicaid but would not use their benefits or re-enroll in the program:

They don’t want to get their medical card [enroll in Medicaid] or even sometimes if they do get the medical card – but many already – and I have clearly heard – many people stopped having LINK [disenrolled in the state’s Medicaid and social service assistance program], and they did not want to apply again… (Chicago Female Group 2)

Another participant described how immigrants’ undocumented status further deterred their utilization of public healthcare resources. First, there was the concern that they would be identified as undocumented if they sought services. Second, there was the concern that service utilization could disadvantage future immigration petitions to adjust their status based on public charge grounds. According to the participant:

... People avoid asking for help because they do not want their legal situation to be exposed, and you also think that if you ask for help, at the moment there is immigration reform, they will tell you, “How are you going to fix papers if you were asking for help from the government? You cannot maintain yourself.” (Phoenix Female Group 1)

A participant in another focus group described a dual deterrent to seeking healthcare, that of stigma and immigration concerns. When asked about immigrants’ utilization of services for HIV infection, alcohol or drug disorders, or intimate partner violence, the participant shared:

… our community prefers not to talk about what they suffer from because we will be stigmatized more, and now with this political situation, with this President, [the Trump presidency] everything is worse. We are simply not going to ask for help. (Los Angeles Female Group 2)

Access to accurate information

Across focus groups, participants commented on the role that access to accurate information played in immigrants’ ability and willingness to utilize healthcare and to advocate for quality care. Many also noted the deleterious effects of inaccurate information. Here a participant attributed immigrants’ concerns about seeking healthcare to their belief in the veracity of information from inaccurate sources. In this case, the information was from sensationalized stories in the media about immigrants that were deported because they had serious health conditions:

…back again to the radio and TV – what happens is that when they [immigrants] see something there, it is what they [tv/radio] will sell and then will exaggerate. They [tv/radio] talk of people who will be sent back to their countries because they spent a lot of time in the hospital, have a terminal disease, so there is no way to help them, then they will be returned to their countries…It happens every day, working in what I do, seeing what is happening each day…This makes it scarier for people to go to hospital... (Phoenix Male Group 2)

Another participant attributed immigrants’ reluctance to seek services, even for citizen children, to political rhetoric about immigrants misusing public assistance:

…because when Trump started, he said people who were abusing public benefits could be deported. So many people are afraid to apply for [Medicaid] for their children. (Raleigh Female Group 1)

Participants also noted that lack of information led some immigrants to assume that publicly funded health services were not available when there actually were sources for care. A participant shared that she had been overwhelmed by the prospect of paying for vaccinations for her child to attend school. Ultimately, she found that vaccination services were available at no cost. She commented that she had assumed the worst—that care was not available:

…Wow, he [her son] will not be able to enter school this year. First of all, we do not have $1,000 dollars saved up to go [to get vaccinations] because I did the math and it was almost $3,000 dollars, what I had to pay. I said, “From where?” So for one year we started to save money, like you have no idea, and me without working and without knowing the language, and the day we had like $1600 or $1800, I told him [her husband] then “We will see if it’s enough or else we say we pay them later, but the child cannot miss another year of school. He cannot.” And when I went, I was not charged anything, nothing. Sometimes we think, but imagine [the worst]. That happened to me. (Chicago Female Group 2)

In this case, the participant described her child missing a year of school because she was unaware that public resources were available to have her child vaccinated.

Another participant noted how lack of information about healthcare options led her to assume that she had to accept what she experienced as inadequate and personally invalidating treatment because she was an immigrant:

P1: …In my personal case, when I arrived in this country, I was soon pregnant and right there in the clinic they told me, “We are going [to get you] your Medical Card.” Well, no, to start I did not even know what that was or what it was about. But he said, “So you can come and be seen here.” …So, in that clinic, the services they gave me were not really the best and the way they treated me was not the best either. They sent me to the hospital [associated] with the clinic, when in my ignorance I did not know that by having a Medical Card I could decide what clinic, with what doctor, at which hospital I want to give birth.

P2: [Or] what pharmacy.

P1: In which pharmacy—everything. I mean, I would let them move me…[They] moved me as they wanted. Sometimes accepting long waits - hours and hours - when I could have gone to another clinic. And in my mind, I foolishly told myself, “This is the only thing I have a right [to] because I am an immigrant.” (Chicago Female Group 2)

Other participants commented on the role that having access to accurate information played in fostering immigrants’ resilience to misinformation and willingness to seek healthcare in an otherwise hostile US immigration environment. One participant described how she benefitted from having access to correct information about the immigration ramifications of utilizing services:

It’s just that they scare you. They say, “Oh, do not ask for emergency [Medicaid]!” or “Do not ask for [food] stamps for your children.”… It’s a lie… There were many lawyers in that place. They came from all over California. It was at the University of Arizona and we were invited and the lawyers said, “It’s a lie.” What they do is to scare you, people misinformed you, but it is not true. (Phoenix Female Group 2)

Here, the participant’s concerns were addressed when she had the opportunity to attend a community informational event. She commented that her fears were based on inaccurate information. She also believed that the misinformation was actively promulgated.

Two participants referred to enormous medical bills incurred when an immigrant who is uninsured or has a low income needs extensive medical treatment such as surgery. They believed that immigrants did not know that there were programs available to defer costs for healthcare:

P1: An example is that people do not want to go to the – go to the doctor, and without asking if they offer financial help, they go to a doctor. They come for a surgery. [Bills for] thousands of dollars arrive, and they say, “How am I going to pay?” Right? And they [the bills] go to collection, unfortunately, because they cannot pay for that—because they do not know that there is financial help for them…

P2: There are hospitals that have those types of programs. Programs that are low cost and dependent on your income.

P1: Yes. …that has been around for a long time. [It is] simply that we are not informed of that and it was not known. They, the hospital, will not say, “Do not worry…Here is this program…Look, [you] earn little? Enroll in this program.”

P2: No, in the hospital they will tell you, “Okay, you don’t have [insurance]?”

P3: “[You] owe this much.”

P1: “[You] owe this much. You can pay in installments. Yes, you can pay [in installments]. How much can you pay? $100? $200?” (Chicago Female Group 2)

The participants explained that some people were unaware of resources to help pay for medical bills and believed that hospitals purposefully did not provide information on these programs.

These excerpts highlight both the deleterious effect that lack of information and misinformation had in promoting concerns about utilizing healthcare. They also noted the role that accurate information can play in fostering resilience and empowering persons to advocate for their needs.

Discussion

We examined Latinx immigrants’ perceptions of US policy related to restrictions on immigrants’ use of publicly funded services and their thoughts about the influence of these on immigrants’ utilization of publicly funded healthcare. The beliefs, experiences, and anecdotes they shared were alarming both from public health and social equity perspectives. They described their experiences of receiving sub-adequate care in invalidating healthcare environments and shared narratives of the dispassionate treatment of seriously ill and injured immigrants. Narratives, whether reliable or not, about healthcare providers ‘turning in’ uninsured, undocumented immigrants to immigration authorities rather than providing them with care extend their vulnerability. Of particular concern were immigrants’ beliefs, many erroneous, about the potential immigration ramifications associated with utilizing healthcare and the stories they shared about immigrants who avoided seeking care because they were afraid of immigration ramifications. Finally, the assumption that resources won’t be available when in actuality they are, appears to be another unintended consequence of policy and associated discourse around immigrants as public charges. This is a largely unexplored topic.

Our study findings are particularly concerning in light of the COVID pandemic. Several commentators have noted the potential for immigrants to avoid COVID-19 testing and treatment because of concerns, often erroneous, about the immigration ramifications of using these. (Artiga 2020; Kim 2020; Page et al. 2020; Bernstein et al. 2021). Findings from our own and others’ research appear to support this concern. (Bernstein 2021; Galletly et al. 2021; Cervantes et al. 2021; Lechuga 2021; Ross et al. 2021)

Limitations

The generalizability of the results of these focus group discussions was necessarily limited in that they reflect the beliefs and experiences of only those who participated. The focus groups were also conducted during a particularly tumultuous time in the history of US immigration law. The themes identified, while instructive, should be explored in further research.

As mentioned, we followed community advisors’ advice and did not record sociodemographic information about participants. We thus cannot make distinctions among participants related to characteristics such as their immigration statuses, countries of origin, and the amount of time they have lived in the US. Although during discussions, some participants did identify their immigration statuses (e.g., undocumented, legal permanent resident), systematic comparisons among participant groups was outside of the scope of the qualitative portion of the study. Data from the subsequent survey portion of the study should, however, elucidate differences.

Finally, focus groups were conducted in Spanish, thus excluding Latinx immigrants who did not speak Spanish. Given survey findings suggest that the majority of foreign-born US Latinx immigrants speak only Spanish or are Spanish-English bi-lingual, (Noe-Bustamante & Flores 2019) we felt this was the best approach in light of the limited number of groups to be conducted in each city.

Conclusion

Participants were acutely aware of the image of immigrants who rely on government resources for subsistence that underlies US public charge policy. Participants made erroneous conclusions about the substance of laws based on the notion of the government rejecting immigrants who may burden government resources. This underscores the importance of ensuring that immigrants have access to information on immigration-related laws and regulations and the healthcare services and resources to which they are entitled.

Importantly, however, participants’ concerns did have a basis in US immigration policy. Law and policy makers should reconsider legislation and political commentary that frame the US policy principle of self-reliance in terms of immigrants’ use of healthcare resources. An alternative frame could emphasize the role that routine preventative care and prompt diagnosis and treatment of health conditions that do arise plays in achieving self-reliance. This frame would advance US immigration policy principles, public health objectives, and the interests of immigrants themselves.