Being undocumented comes with detrimental barriers. Without a social security number, having access to health insurance becomes very challenging. When emergencies hit undocumented and mixed status families, the only accessible care is an emergency room and an insurmountable amount of debt. Data shows that adequate healthcare is dependent on the accessibility of health insurance. This study aims to depict the different aspects impacting undocumented and mixed status families in their attempt to access healthcare. The study gathered 13 in-depth stories in which four major themes were observed, (1) the emotional and financial stress of lacking health insurance, (2) fear of exposing one’s immigration status to a healthcare institution, (3) dependence on community health clinics and (4) seeing hospitals as the last resource. All data and analysis was introduced to community members of Albuquerque and Santa Fe, NM. After a facilitated dialogue and anti-racism activities, youth in both cities expressed a need for a policy change at the state level. Two policy request formulated by the community were: (1) A policy that opened access to undocumented families to obtain a form of health insurance and (2) more community health clinics in low income neighborhoods. To address these issues, the New Mexico legislature can enact policy like the Targeted Medicaid Buy-In which will open the access to a health insurance to the undocumented community.

Lawmakers cannot keep ignoring the global health statistics that describe the deficient state of healthcare in the US. The US is spending two times more than other developed countries on healthcare per capita[1]. However, in terms of quality of healthcare, the US does not compare to other countries spending half of what the US spends[1]. One of the biggest concerns on the healthcare system is its accessibility, especially among the low income, undocumented immigrants of color. Even though the Affordable Care Act (ACA) has shown to increase the access to healthcare by providing accessible health insurance[2], the undocumented community has been left out. Undocumented immigrant are ineligible to obtain health insurance through the ACA. This leaves approximately 3.3% of the U.S. population still uninsured [3].

Upon Institutional Review Board approval, the NMDTUR team collected a total of 13 individual interviews across the state of New Mexico. All the participants consented to record and use their quotes for the publication. No identification information was ever collected from the participants. All data was transcribed in its original language and analyzed. The NMDTUR team used Nvivo for organizational and analysis purposes. There was a total of four rounds of analysis that was composed of (1) individual transcription and thematic analysis, (2) collaborative thematic analysis development with discussion between the team with a code book development, (3) final round of thematic coding of all data with code book, (4) discussion of significance and trends of themes in data. Funding support for all rounds of data analysis was provided by the University of New Mexico Transdisciplinary Research, Equity and Engagement Center for Advancing Behavioral Health (TREE Center).

Analyzing the demographics of all 13 participants Table 1 depicts, there was a majority of self-identified female participants and an overall dreamer and undocumented social identity. However, 3 of the interviewers transitioned into Legal Permanent Resident status or otherwise naturalized but came from mixed status family households. All interviewers had Spanish as the primary language, 9 individuals reported in having no health insurance while 4 reported in having access to health insurance through an employer.

Table 1: Demographics of Participants (n =13)

Thematic analysis of all individual interviews resulted in 4 major overlapping themes which included (1) the emotional and financial stress of lacking health insurance, (2) fear of exposing one’s immigration status to a healthcare institution, (3) dependence on community health clinics and (4) seeing hospitals as the last resource. Those 4 major themes overlap and depict the complex situations in which both undocumented and mixed status families find themselves in the process of obtaining healthcare in New Mexico.

The emotional and financial stress of lacking health insurance. Access to health insurance is a critical bridge to healthcare not only in low-income families but also undocumented and mixed status families. America, a 19 year old college student from Santa Fe, NM,  grew up in a mixed status family. America shares how her undocumented sister struggled with navigating healthcare institutions. The root of the problem was her sister’s lack of health insurance.

The beginning of every year my sister [who is undocumented] used to get these huge fevers!... It was horrible I remember… One of my aunts, after she became a citizen here, she became a nurse at the hospital and I remember one of the nights that my sister got very ill, my family were like… “this is fucked up!”... My aunt help us get through the hospital… I mean we couldn’t do anything with that huge fever she got, it was not like “here you go, here is ‘el caldito de pollo’ [here is the chicken soup]”[...] She got admitted to the hospital and I remember seeing her while she slept, all sweating… I remember asking myself “what is going to happen to my sister?” [..] [After that] my sister could never go to the bi-monthly physicals [because of her lack of insurance]... like I remember even going to the dentist, all my other sisters [who are U.S. citizens] would go to the dentist expect her [because she lacked health insurance][...] There comes a point in our lives that we are like “fuck it!” when a situation is so bad that somehow we figure out how to spend $5,000 or $10,000 for my sister to go to the hospital…. For example, they [the doctors] detected a tumor in her brain and they had to do a surgery and because she can’t get insurance it would cost us $10,000 …. How the fuck would we get that money!?...My sister had to go to get financial help like five times to try to get a payment plan [...] it really sucks to see my sister in surgery and be thinking [about] how we are going to pay for it… like it’s different with me right? I get sick and at least you know that we are going to have to figure it out with the insurance and all that but with my sister it’s like “Fuck! We have to get $3,000 somehow…” you know?

The life on an undocumented family is impacted significantly when a member or everyone has no health insurance. One can only imagine the insurmountable stress stemming from the financial and health burden of the participant’s loved one. While it is obvious that surgery is necessary, the participant and her family are faced with a dilemma. A dilemma of having to stress about money and not the surgeries’ success.This is due to institutional barriers to adequate financial support. Similarly, there are other situations in which the lack of health insurance plays a role on the decision of whether to attend follow up appointments with doctors or not. Luz, a 19 year old undocumented student from Albuquerque, NM, shares an incident that happened to her mom. Her mom even in critical health, hesitated in attending follow up appointments. Her mom hesitated because of the cost they would have to pay without insurance.

The time the H1N1 was around… it was so common for people to get it and like people were dying from it and stuff… well turns out that my mom got it and she lasted with the cold or whatever for a few weeks and then one day my dad decided that if she didn’t get better in a week we had to take her to the hospital… we went to a hospital first but they didn’t want to treat her [because of the lack of health insurance] and then we went to another one and she got admitted [to the hospital] that day and actually went into a coma. She was there for a week and a half… they told her that she could have died and needed to go again [for follow up appointments] but she didn’t want to go because of the money even though she knew she was ill…. That was the only time I remember we went into a hospital….

Luz’s mom decided that it was better not to spend a ridiculous amount of money in being seen by a doctor. Instead she endured the illness, which may have placed her at risk for getting worse. Many other families go through the same experience. Having a health insurance changes the lives of people and influences the decision of whether to seek a hospital or not.  Juice, a 31 year old undocumented accountant student shares his experience and point of view on the significance of having a health insurance.

I have never requested or been able to [access community resources and hospitals]. I mean the only times has been like...hum… going to the doctors to “La Familia” [Clinic] because of the discount but that’s it… if you don’t have a social security number or health insurance it’s not the same… that’s what I have discovered. Once someone gets a health insurance it’s another whole world when you go to the doctor because when you don’t have a social security number or health insurance they don’t do so much for you but once you have a health insurance they would do every single test they can to find whatever you have.

Having health insurance indicates how much access an undocumented or mixed status family can have to healthcare institutions. Most stories collected throughout the study show the dilemma of weather worrying about the medical intervention needed or the financial debt that will come with it. Not only does the lack of health insurance play a role but also the fear of exposing one’s immigration status.

Fear of exposing one’s immigration status to a healthcare institution

Being undocumented in the United States involves the fact that one fears exposing one’s immigration status to institutions. Most fear comes from the idea that one will get immigration officers called on them and thus leading to one’s deportation. Nadine, a 31 year old graduate student reflects on her experience growing up:

...I think my parents didn’t take us to like the dentist or the doctor because we didn’t have health insurance and my parents didn’t speak English so they couldn’t….like there were things to help us out but my parents just didn’t know how to ask for them since they didn’t know the language[...]Growing up we never seeked any help like that and also my parents were really afraid of asking help because ‘la migra’[ICE] was going to get us or something.

The fear of exposing one’s immigration status is not only rooted in the fear of deportation but also fear of inhibiting a pathway to citizenship. Raul, a 29 year old, reflects on reasons why he and his mom never seeked financial assistance.

My mom would avoid any sort of public assistance. The only time I and even my mom would go to the hospital was if it was an emergency[...] most people that are not undocumented, when they feel bad they go to the hospital and they schedule an appointment with a doctor… that was not the case for me and my family… we were just told to rest and have some remedy from my grandma or something like that… but only a few times we had to go to the hospital …  we wanted to avoid it as much as possible though[...] in general I would say that as an undocumented person you fear that… hum… that if you try to seek help someway that is going to lead to you … being seen as you are abusing the system… so we would try to avoid like any sort of aid. Even if it was well intended…[We would avoid seeking aid] because we wanted to avoid that perception that we were abusing the system and because of [the] consequence [of] not being eligible to becoming legal residents.

Families, like Raul’s, avoid going to hospitals to prevent the narrative that undocumented families take unfair advantage of government support systems. Not only do families have fear of that rhetoric but also avoid government support systems to protect their chances of future naturalization. Because of this, Raul and his family resorted to preventative measures despite the impact on their health.

Dependence on community health clinics

While home remedies are important, they sometimes are not sufficient enough to take care of serious illnesses as they develop. The question comes up, how is it that undocumented families take care of their health needs? The most used resource participants mentioned was community health clinics. Despite the utilization of these clinics, concerns with financial burden continued to be of mention. Juan, a 28 year old graduate student from Albuquerque remembers an incident where he went to a community clinic. In attempting to not accrue debt, Juan took the risk of not using appropriate emergency services, which would otherwise get his medical needs met immediately.

I do remember going to the hospital once but it was because I broke my nose… well someone broke my nose… [In the past]I had friends that needed an ambulance and the ambulance actually came for them but that bill was… and friends who were also undocumented actually… and that bill was a $5,000 bill just for an ambulance. So, knowing about the bills, [when that person broke my nose] I decided to get up and walk home with a broken nose and bleeding. It wasn’t until the next day that I went to a local clinic to get an x-ray and MRI actually. If I was [an] adult, that MRI would have cost me $5,000 plus [the] ambulance that would be $10,000, plus the service for re-breaking my nose and putting it back into place was another charge…. Thankfully I was a minor so I had a discount.

The reality is that for undocumented families, the only places known to the community are local health clinics that are actively working with low income patients. Tina, a 23 year old student living in Albuquerque remembers when she had just immigrated and needed vaccines to be admitted into the public school system.

We had access to community clinics so like… the first choice clinics. Yeah I think it was the first place we visited because for school you had to be vaccinated and they wanted to make sure you had the shot record and all that so that was the first place… It was actually one of the first and accessible places that we had because we couldn’t go to the hospital because it was really expensive and all that…

Undocumented and mixed status families see community health clinics as the only accessible source of healthcare. This reality is caused by the high cost of healthcare and the fact that community health clinics are known to serve low-income and immigrant families. An issue rises from this dependence on community health clinics; that is the fact that families see major healthcare institutions at the last resource.  

Seeing hospitals as the last resource

Unfortunately, combining the lack of health insurance, and fear of exposing one’s immigration status leads undocumented and mixed status families to see hospitals as the last resource. A common theme among all stories was the reality that all participant’s families would wait until the last moment to go to the hospital. They would simply avoiding going to a hospital in situations in which one’s health could be at risk. It is only when the family or individual feels like there is no other option that health institutions are considered. Adala, a 24 year old graduate student, shares about a time when her mother was ill and seeing a doctor was critical.

Yeah, when we were little… if we went to the doctor we went to the emergency room. We didn’t have like a regular doctor we would go to… and we didn’t know of any clinics that would take you if you didn’t have a social security number … so, we knew we could go to the ER but I remember at that time my mom would give a… a fake SSN [Social Security Number] but like…. It wasn’t until later in New Mexico that I realized we didn’t have to have a SSN to get emergency care[...] My brothers had regular doctors...but like my brothers are US citizens! (laughs) But... I don’t remember how often we would go, but my mom has suffered from hypertension and like... Cholesterol and things like that… so there was no other option, we would have to go to the ER[...]

Undocumented families know that going to the hospital without insurance means that they may end up with insurmountable debt. Utilization of a hospital as a last recourse, because of financial strain, jeopardizes the health of these families. This situation causes worry and stress on how they are going to pay for it. Luz explains how the worry and stress has impacted her community.

[My dad] got very ill but it wasn't until they forced him to take a week off so he could rest, then he did it… like people had to force him to take care of himself. Otherwise, he would continue going to work….I think that’s true as a community though...we turn to go to the hospital until we are dying or like when we really need to go and we don’t want to most of the time because of money and also because we don’t know of resources…. So it’s like we don’t go because we don’t know of the resources and when we do know we don’t go because we don’t have the money for it.

All stories depict a healthcare system that is dehumanizing for undocumented and mixed status families. Undocumented individuals should no fear exposing its immigration status or debt when it comes to obtaining healthcare. Stories like the one’s shared in the study, makes it clear that if New Mexico wants a healthy community, healthcare should be accessible for all.

Community Gathering Summary

The community gatherings were hosted in two specified local communities where New Mexico Dream Team chapters are established and where some participants were recruited from. The community gathering assisted in further conceptualizing, verifying, and finalizing the four major themes. The main objective was to facilitate discussion between the community members who participated and to collaboratively delineate nexts steps. Overwhelmingly, participants at both community gatherings were concerned with policy. Specifically, it was discussed that (1) a healthcare insurance be open and accessible to undocumented families and (2) there be an increase in community clinics in low-income communities.

The results of this study reflect a common notion prevalent throughout the undocumented and mixed status community. Avoiding the need to go to hospital institutions or clinics is clearly rooted in the lack of access to health insurance and fear of exposing one immigration’s status. The inaccessibility of health insurances in the undocumented community is placing undocumented and mixed status families of New Mexico in grave danger. It is putting their health and lives at risk. This has a unique impact to children in the state that are growing up undocumented or in a mixed status household. Families and future children would grow up with the same sense of seeing healthcare institutions as the last resource. New Mexican legislators must work to pass legislation that will allow undocumented families to have access to health insurance.