Alexander Dillabaugh1*, Dr. Robert Irwin 1
1Department of Spanish and Portuguese, University of California, Davis
Abstract
In the United States, 25% of adults have a disability, and one-third of them lack a regular healthcare provider, often experiencing unmet medical needs due to financial barriers (CDC 2020a). Additionally, with a quarter of U.S. children having at least one immigrant parent (Harwood 2012), and studies showing that foreign-born, uninsured children are among the most likely to go without consistent healthcare (Guendelman 2001), the healthcare system significantly underserves both immigrant and disabled communities.. This marginalization is even more pronounced at the intersection of these identities.
This thesis explores the unique challenges that monolingual Latino immigrants families face while raising children with developmental disabilities, with particular attention to the linguistic and cultural barriers that hinder access to care. It draws on existing research to contextualize the disparities affecting these communities, while also addressing the lack of scholarship on their overlap. The study includes interviews with seven monolingual Spanish-speaking mothers in Sacramento, California, offering qualitative insight into the specific barriers they encounter and the resources they find most helpful. The findings aim to inform more inclusive healthcare practices and improve service delivery for this intersectional population.
Introduction
Healthcare inequities in the United States are shaped by intersecting social, linguistic and cultural barriers that disproportionately affect marginalized groups. Immigrant families and individuals with disabilities are among the most impacted, often reporting unmet medical needs, limited access to consistent care and experiences of systemic exclusion (CDC 2020a; Guendelman et al. 2001). Nearly one-quarter of U.S. children have at least one immigrant parent (Harwood et al. 2012) and 25% of adults live with a disability (CDC 2020a), yet these populations frequently encounter barriers such as inadequate insurance coverage, provider bias and a lack of culturally and linguistically appropriate services (Khanlou et al. 2015; Fujiura et al. 2018).
While research has documented barriers for immigrant and disabled populations independently, few studies have examined the compounded challenges faced by those at their intersection. Families raising children with developmental disabilities must navigate complex service systems, confront stigma and often struggle with the scarcity of providers trained in both disability care and cultural competency (Ervin et al. 2014; Pondé and Rousseau 2013).
Cultural and linguistic incongruency compounds these barriers. Language differences can impede diagnosis, delay treatment and diminish trust in medical providers, particularly when interpreter services are inconsistent or unavailable (Juckett and Unger 2014). For immigrant families, these challenges are exacerbated by unfamiliarity with U.S. healthcare systems, fear of discrimination and the emotional burden of social isolation (Khanlou et al. 2015; Harwood et al. 2012).
This study addresses this gap by combining a literature review with qualitative interviews of seven monolingual Spanish-speaking mothers in Sacramento, California. It examines how linguistic incongruency, cultural differences and structural healthcare limitations affect their ability to access services for their children. By amplifying these voices, the study seeks to inform more equitable, culturally competent and patient-centered healthcare practices for this intersectional community.
Methods
To achieve this aim, I reviewed existing research on health disparities that affect the U.S. immigrant and disabled populations separately, along with the limited research that explores the intersection of these communities. I then collected qualitative data by interviewing seven monolingual Latina mothers of children with developmental disabilities in the greater Sacramento area. By combining these two approaches, I will highlight the specific barriers these individuals have encountered and the resources they found most helpful.
Inclusion and Exclusion Criteria
During the screening process, participants rated their English language proficiency as 2 or below on a 1-to-5 scale (with 5 indicating 'native speaker' and 1 indicating 'no language competency'). Interviewees identified as U.S. immigrants, originally from Mexico or a country in Central or South America. Participants also reported that their child had an intellectual or developmental disability, as defined by the National Institutes of Health. Adults unable to consent were excluded, as were any individuals under the age of 21.
Procedures
Prior to the interviews, participants received a detailed description of the research project and an outline of the interview procedure. Each participant was provided with a consent form written entirely in Spanish and was asked to provide verbal consent. This procedure was designed to avoid the collection of legal signatures, thereby minimizing potential risks to participant anonymity. Following the provision of oral consent, it was reiterated that participants retained the right to withdraw from the study at any time and to share only information they felt comfortable disclosing. Interviews were conducted virtually, either by phone or Zoom, depending on participant preference, and ranged from 30 to 45 minutes in duration.
Participants were withdrawn from the study only if they rescinded their consent. Although no participants elected to do so, the study protocol specified that, in such cases, all associated materials – including audio recordings and transcriptions – would be destroyed immediately to protect confidentiality. There were no anticipated circumstances under which participants would be removed without their consent, provided they met the established inclusion criteria and did not meet any exclusion criteria.
Participant Recruitment and Compensation
All participants resided in the greater Sacramento area and were recruited through Angie Rivera, the leader of the UC Davis MIND Institute’s support group El Grupo de Apoyo de Padres para Padres, which serves immigrant parents of children with developmental disabilities. To compensate participants for their time, each interviewee received a $25 gift card delivered either by physical mail or email, according to individual preference.
Anonymity and Protection of Participants
To ensure participant anonymity, legal names were not recorded, and no personal identifiers were included in the data. Video recordings of the interviews were destroyed immediately after completion. Only audio recordings were retained until transcription was finalized, after which the recordings were securely destroyed to protect any potentially identifying information. Confidentiality was maintained throughout all stages of the research; participants’ legal status in the United States was neither asked, mentioned nor recorded. Furthermore, all names used in reference to the interviews are pseudonyms, unlinked to the actual identities of the participants.
Language Disclosure
Throughout this work, I use intentional language to best represent the individuals to whom the terms refer. However, I acknowledge that terminology continuously evolves to more accurately and respectfully describe the people it represents. To ensure accuracy and appropriateness, I follow the definitions and terminology recommendations provided by the National Center for Disability and Journalism, Freedom for Immigrants, and the Centers for Disease Control and Prevention (CDC).
The CDC defines disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions)” (CDC 2020b). Disabilities encompass many different types; however, this thesis focuses on developmental disabilities, which the CDC defines as “a group of conditions due to an impairment in physical, learning, language or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning and usually last throughout a person’s lifetime” (CDC 2020c). I chose to use the term “disability” rather than “differently-abled” to fully acknowledge the reality that these individuals require additional resources and accommodations, particularly within healthcare settings.
When discussing individuals who immigrated to the United States from a foreign country, I used the term “immigrants”; however, it is important to acknowledge that this terminology does not fully capture the diverse range of statuses and subcategories within this population. I also used “Latinx/Chicanx” to refer to individuals or groups of Latin American or Mexican cultural or ethnic identity living in the United States who have not disclosed their pronouns, in order to maximize gender-inclusive language.
Literature Review
Community Prevalence
According to 2018 data collected by the Centers for Disease Control and Prevention, 23.9% of all Californians have a confirmed disability, with that same statistic increasing to 26% nationwide. More specifically, 11.5% of the entire U.S. population and 10.2% of all Californians have a cognitive disability. However, these disabilities are not evenly distributed across demographic groups. For example, in California alone, 20.8% of white non-Hispanic individuals have a diagnosed disability, while 29.9% of Hispanics, 32% of Blacks and 43.8% of Native Americans/Native Alaskans are living with a disability (CDC 2021).
Additionally, the population size of the U.S. and Californian immigrant communities is significant. “Recent census data shows that nearly one-quarter of the U.S. children have at least 1 immigrant parent” (Harwood 2012 p.191). According to the Pew Research Center, “the U.S. foreign-born population reached 45 million in 2015” and is “projected to reach 78 million by 2065” (Pew Research Center 2017). Among this large population, Mexico is the leading country of origin for U.S. immigrants, accounting for 25% of all foreign-born residents. Yet these immigrant populations are not evenly distributed throughout the country and typically reside in cultural hubs or geographic regions. The Pew Research Center identified Sacramento as one of the 20 U.S. metropolitan areas with the largest number of immigrants in 2018 (Pew Research Center 2017). Therefore, it is clear that the immigrant and disabled populations are prevalent in the United States and especially within California and the greater Sacramento area. Accordingly, our healthcare system has a responsibility to shape its structure and functionality to accommodate its changing landscape and the specific needs of individuals it serves. However, this can only be done by elevating the voices of these individuals and researching the overarching barriers that these communities face independently and how they are exacerbated by the intersection between the two identities.
Health Disparities Faced by the U.S. Disabled Population
The U.S. disabled population not only requires substantial medical care related to their conditions, but also faces elevated risk factors that extend beyond their disabilities. According to extensive data from the Center for Disease Control and Prevention, individuals with intellectual and developmental disabilities are more likely to experience poor health outcomes, unmet healthcare needs, victimization and early mortality. Among individuals with a cognitive disability 38.2% are obese, 31.6% smoke, 41.3% have high blood pressure and 43% live inactive lifestyles. All of these are statistically significant since, among individuals without a disability, only 26.3% have obesity, 13.4% smoke, 25.9% have high blood pressure and 24.3% live inactive lifestyles (CDC Grand Rounds 2019). These risk factors are not directly associated with their disability but rather are manifestations of the marginalization that these individuals face.
Furthermore, research based on Special Olympics Healthy Athletes screenings, occurring between 2017-2018, illuminated startling statistics. On an average U.S. Special Olympics Team of 10 athletes, eight are overweight or obese, seven have significant problems with flexibility, four need a new prescription for eyeglasses, two have an eye disease, three will fail a hearing test, three have low bone density, three have tooth decay and one needs an urgent referral to a dentist (Special Olympics 2018). Although the Special Olympics are open to any individual with a disability, the attendees are likely to represent the proportion of the population that is most active and has the support system to take them to these events. Thus, it can be assumed that these health risks are more prevalent among the entirety of the disabled population. However, these health risks typically develop into serious and life-threatening medical emergencies. “Children with DDs [are] 2 to 8 times more likely to have more health care visits”, “undergo a surgical or medical procedure, [and] visit medical specialists, health professionals and/or emergency departments” (Harwood 2012 p.192). Healthcare in the United States is often a significant financial burden on individuals and families. It has been found that “prescription medication costs were the primary driver of total health care expenditures for Americans with IDD” (Fujiura 2018). According to the CDC, during 2001-2011, Medicaid members with intellectual/developmental disabilities experienced over 21,000 potentially avoidable visits to the emergency department with overall financial costs reaching over $35 million in South Carolina alone (McDermott 2019).
These health disparities stem from a multitude of interrelated factors, and addressing them requires multifaceted, systemic interventions rather than a singular solution. A recurrent concern among individuals with disabilities involves the quality of their direct interactions with healthcare providers. Many report that providers fail to listen attentively, demonstrate respect, or engage meaningfully with their concerns, resulting in significant challenges when seeking providers who are both competent and willing to meet their healthcare needs. The discomfort affects all parties, as healthcare providers frequently report that they are unprepared and uncomfortable when caring for patients with disabilities, as well. This is unsurprising given the limited training and preparation providers receive in this area. According to a 2014 article published in Frontiers in Public Health, there are few national standards for medical school training on caring for individuals with disabilities. The authors note that “in residency or traineeships, whether curricular programs of primary care or consulting specialties, there are no national expectations,” and that “what happens in a particular medical school often depends on the presence or absence of faculty ‘champions’ who advocate for IDD content” (Ervin 2014). Despite physicians completing extensive education – including four years of undergraduate studies, four years of medical school, and two to seven years of residency training – there remain virtually no national requirements for preparing them to work with a population that comprises approximately 25% of American adults.
In light of these statistics, the health disparities experienced by the intellectually and developmentally disabled population appear to stem from insufficient representation and visibility within the healthcare system on which they heavily rely.
Health Disparities Faced by the U.S. Immigrant Population
There is a relatively abundant amount of research on the health disparities faced by the U.S. immigrant population. These works point to a variety of factors that result in the marginalization of this community and the barriers limiting access tohealthcare. In a study conducted by the Maternal and Child Health Bureau of the Health Resources and Services Administration, it was found that “children from immigrant households were more than 2 times as likely to not have a usual source of care” (Harwood 2012 p.194). Additionally, an article published in Health Affairs states that “after adjusting for confounders, foreign-born uninsured children stood the highest risk of not having a regular care source, for that care source not to have been provided in a doctor’s office or HMO, and for not having seen or visited a doctor on a timely basis, if in less-than-excellent health” (Guendelman 2001). These disparities cannot be solved by minor adjustments in the healthcare system, for they are rooted in a variety of factors. One of which is the lack of understanding of how to navigate the healthcare system for “38.4% of immigrant households reported need for extra help in coordinating health care as opposed to 23.3% of nonimmigrants” (Harwood 2012 p.193). Additionally, immigrant parents are more than twice as likely to report physicians not spending adequate time with them or their children. For a community that inherently struggles to understand the complexities of the U.S. healthcare system due to language barriers, their disenfranchisement is exacerbated by the lack of sufficient communication and connection to healthcare providers.
Additionally, language is a major barrier faced by “immigrant parents, particularly those with limited English skills, [whom] are more likely to need and receive help (including interpreters) with making phone calls and medical appointments than nonimmigrant parents” (Harwood 2012 p.195). Insurance coverage is also a significant obstacle to accessing healthcare for this population, considering the various factors that impact insurance eligibility including legal status and employment. According to the Migration Policy Institute, “in 2017, approximately 21 percent of Mexican immigrant families were living in poverty, a higher rate than for the native born (9 percent) and for immigrant families overall (14 percent)” (Zong 2021). The significantly higher poverty rates of Mexican immigrants illuminate the higher relative financial burden that healthcare imposes upon these families and often serves as a deterrent to seeking medical attention until it becomes a healthcare emergency. In a study by Western Michigan University in the Journal of Sociology and Social Welfare, among undocumented Mexican immigrants “thirty-eight percent of respondents reported that they would use hospital ER for medical care” and “those with one or two children reported the highest ER use rates (40%), compared to the subgroup with no children” (Akincigil 2011).
The barriers discussed here are by no means exhaustive and only begin to reveal the broader marginalization experienced by the U.S. immigrant population. While these inequities do not have simple solutions, it remains essential to acknowledge the existing disparities and understand the factors that contribute to these challenges.
Disparity Exacerbation at the Intersection Between the Immigrant and Disabled Populations
As previously mentioned, there is a startlingly scarce amount of literature centered on the intersection between the disabled and immigrant communities, which seems to reflect the general lack of visibility for this community. However, the sparse literature that does exist illuminates the overwhelming need for further research on this specific intersectional community. One such reason is the recurring discovery of a correlation between immigrant families and a higher prevalence of developmental and intellectual disabilities. Many papers’statistics vary in their findings in regard to the extent of the correlation between the two and vary even more severely on the countries of origin that are included in this correlation. However, the papers overwhelmingly point to some sort of correlation. One such research paper by Robin L. Harwood et. al published in 2012, states that “for children aged 3 to 5 years, the proportion of children with ASDs and select DDs from immigrant households was twice that of nonimmigrant households” and that “a higher percentage of male children with ASDs and selected DDs was found in immigrant households” (Akincigil 2011). Another study published in the Journal of Pediatrics claims that “from 1997 to 2010, children born to mothers from foreign-born low-income countries had an increased relative risk of autism spectrum disorder with intellectual disability, and children born to foreign-born mothers from upper-middle-income countries had an increased risk of cerebral palsy with intellectual disability” (Abdullahi 2019). The same article additionally states that a “recent review found that maternal migration was a significant risk factor for the subsequent development of neurodevelopmental disability (autism spectrum disorder with and without intellectual disability, intellectual disability, and attention deficit hyperactivity disorder).”
Interestingly, a paper published in the Journal of Autism and Developmental Disorders echoes these same findings: “Compared to children of non-immigrant mothers, 10 studies found increased risk of autism and intellectual disability and four studies found increased risk of autism without identifying concomitant intellectual disability. Very high risks were observed if the mother’s country of birth was a developing country or region.” Furthermore, “each study found an increased prevalence of ASD and ID in children with a mother of immigrant background compared to the children of non-immigrant mothers” (Abdullahi 2017 p.29). However, this same article later elaborates that “risks were reduced for immigrant Hispanic mothers from developing countries such as Mexico and central/south America, whereby Mexican mothers were less likely to also have a child diagnosed with ASD and ID.” This additional specification is not shared by all other studies but divulges an interesting exception to the generalized correlation.
I do not claim that the increased rate of developmental disorders among children of immigrant parents reflects a causal relationship, as numerous factors may contribute to this correlation – none of which are the fault of the individuals involved but rather stem from systemic stressors. Instead, this correlation underscores the importance of recognizing the intersection of these communities and prioritizing efforts to dismantle the barriers these families face.
Resolutions
There is no overarching solution that will fix the struggles of every family. However, there are general changes that address common barriers faced by the vast majority of these communities. Firstly, many articles that investigated the immigrant and disabled populations respectively call for more family-focused interventions “because of their focus on family behaviors and parenting styles” (McCubbin 1993). It may therefore be beneficial to engage in a whole family and patient-centric approach when providing care to these communities.
Research has also shown that home visits to families who have children with disabilities may be better for them, rather than the hospital setting” (Khanlou 2015 p.670). Second, “simply extending health insurance coverage to uninsured foreign-born children of the working poor is likely to have a major impact on their access to and use of health care” (Guendelman 2001). Third, addressing and compensating for income inequality can vastly reduce the relative financial burden of medical care for low-income families and increase their likelihood to seek care. Lastly, “improving cultural-sensitivity of health care, social and developmental services” as well as “increasing participation of fathers” (Khanlou 2015 p.668) will decrease aversion to the traditional American healthcare setting by creating a family-centric experience that reflects individual cultural preferences.
Milena Pereira Pondé and Cécile Rousseau, in their research article ‘Immigrant Children with Autism Spectrum Disorder: The Relationship between the Perspective of the Professionals and the Parents’ Point of View,’demonstrate the need for cultural sensitivity and the importance of adaptable medical practices in order to match the needs of every patient, especially when working with a population that sits at the intersection of two historically marginalized communities. They exemplify the extent of this claim with the following statement: “Parents’ origin appears to influence their perception of the child’s problems. Some mention autistic traits, while others prefer to categorize it as a ‘developmental delay or communication problem’ or ‘no problem at all.’” These diverse strategies may be related to the need to preserve hope for their children’s future or to a different perception of the child based on cultural diversity. Community services have to balance the need to convey objective and accurate information with the necessity to protect parents’ investment in their children. Although true for all parents of ASD children, it may be particularly important for immigrant parents who are undergoing losses and experiencing a cultural shock and may not be ready to acknowledge that their child is facing major difficulties (Pondé 2013 p.137).”
As stated above, the quantity of literature dedicated to this specific intersectional community is extremely scarce. Accordingly, the limited number of articles results in a limited scope of conclusions. Therefore, it is necessary to include the voices of these individuals and hear personal testimonials to their experiences, struggles and triumphs.
Community Interviews
Interview Questions
The questions asked to each interview participant are as follows:
1. What is your home country, and for how many years have you lived in the United States?
2. What is your child’s official diagnosis, and when did you receive this diagnosis?
3. On a scale of 1 to 5 (5 being a native speaker and 1 being little to no language abilities), how would you rate your English language proficiency?
4. Thinking back to when your child was first diagnosed in the United States, what resources were you given by the doctors and how was the diagnosis experience?
5. How would you describe your trust in the U.S. healthcare system, and do you usually seek alternative options for your child prior to formal U.S. healthcare?
6. If there was an immigrant family in the U.S., whose child has just received the same diagnosis as yours, what would you say to them and how would you support them? What advice would you give to their doctors to help them better support this family?
7. What barriers have you faced while seeking professional assistance or attention for your child in the U.S.? Have there been resources that you have been unable to attain due to these barriers?
8. Do you feel that your understanding of or access to resources related to your child’s condition in the U.S. is inhibited by your English language competency?
Presentation of Interviews
To elevate the voices of participants, I have chosen not to organize their responses strictly by interview question. Instead, I present a cumulative, narrative-based summary that centers their lived experiences. While it is not feasible – nor methodologically appropriate – to include every individual response in full, doing so could obscure the broader patterns and themes conveyed. Rather, I highlight the central sentiments shared across interviews and incorporate translated quotations that reflect the core of their perspectives. All quotations were originally given in Spanish and have been translated by me, with care taken to preserve the participants’ intentional diction and rhetorical nuance.
Anita
Our first interviewee, who I will refer to as Anita, is a mother from Zacatecas México who has lived in California for over 21 years. Her son has cerebral palsy and received his diagnosis no more than 6 months after birth. Anita describes her English language abilities as a 2 on a scale from 1 to 5.
When asked about her child’s diagnostic experience, Anita took a serious tone and stated that “part of herself was erased.” Doctors had noted that all she could do for her child was to give him the best quality of life that she could because, at the time, there was no way to know the extent of his condition or abilities. She added that she did not understand the diagnosis during this first discussion with the doctor because the conversation was in English, but that eventually, she began to understand the basis of the condition, the range of its severity and the associated ramifications. Upon asking whether she believes she has a better understanding of her son’s condition today, she contended that although it is not perfect, she has a much better understanding of “what it can be” and “the different ways of seeing children with diagnoses” such as ASD, Down syndrome and so forth.
As our discussion continued, I asked about what obstacles she has faced when looking for professional assistance for her child in the United States. Anita responded that language barriers are by far the most cumbersome. She then iterated that “the vocabulary that they use in the doctors’ offices is very difficult to understand” because the terms used are not typical in day-to-day conversations. I then asked if there are specific resources that she cannot access as a result of these linguistic barriers. She quickly answered, “well yes, because for example… many times in the therapies they do not speak Spanish,” so she is resultantly unable to understand the specialist. As a result, Anita divulged, these repeated barriers cause her to often withdraw from the situation, resulting in a lower quality of care for her child. “You don’t have the security of asking questions,” she said, “so you are left blank or are ashamed because you cannot say the words” and therefore “you lose valuable information about how you can help your child.” She then elaborated that without the power of having these conversations, you cannot obtain the same necessary “resources and everything you might have had if you were able to ask” your doctor freely.
Anita was then asked what she would say to a family, similar to hers, that has just received the same diagnosis as her child. To which she responded with “first, you have to have patience because the road is not easy. Second, is that you need to be aware of your child’s needs and what specialists are needed in the areas that the family is concerned.”
Lastly, Anita was given the opportunity to expand upon anything that she wished to share, and accordingly she added that one’s culture is an important factor to consider. “For example,” she elaborated, “I am Mexican. The Mexican culture aside does not ask for many resources because we have the mentality that it is our child and our responsibility, and other people don’t have the same responsibility…So, this idea is stuck in my head that sometimes simply the language limits us from looking for other options” and that “your child is your responsibility,” soand no one else needs to help support them.
Bella
The following interview was with a Guatemalan mother who has lived in the United States for over 22 years, whom I will refer to as Bella. Her 22-year-old child received his first diagnosis of Down syndrome at birth and the second diagnosis of Autism with an intellectual disability at 3 years old. Bella describes her linguistic abilities as a 2 on a scale of 1 to 5, explaining that she considers herself to be on the lower-middle end of the linguistic spectrum.
Bella described the experience of receiving her child’s diagnosis as overall “a beautiful experience because [the doctors] gave [her] the support that she needed.” When asked what specific resources, she was offered and most utilized she responded with primarily local Sacramento organizations: Warmline, the Regional Center of Sacramento and el Grupo de Apoyo de Padres para Padres (the support group associated with the UC Davis MIND Institute and led by Angie Rivera).
When asked what obstacles she faces while finding healthcare for her child, Bella responded by saying that usually there are not sufficient bilingual Spanish-translators present, and many times she does not receive appropriate attention as a result of these linguistic barriers. Bella, additionally, stated that language is one of the most significant barriers that she consistently faces when interacting with healthcare professionals. When asked if her understanding of her child’s condition was inhibited by these linguistic barriers, she claimed that when she received her child’s diagnosis, she did not know how to handle the situation. However, the support group, el Grupo de Apoyo de Padres para Padres, was full of many families that helped her immensely. Now, she said, she may not know everything, but she knows how to defend herself and feels more confident navigating the U.S. healthcare system, thanks to this community-led support group.
Finally, Bella was given the chance to share what advice she would give to a family similar to hers that hadreceived the same diagnosis as her child. She stated that she would tell the family “not to worry, that everything will be okay, that there are plenty of resources available and that they are not alone.”
Carla
The following interview was conducted with a mother who immigrated to the United States from Mexico over 30 years ago, whom I will refer to as Carla. Carla’s child is quadriplegic and was first diagnosed with Cerebral Palsy when they arrived in the United States in the ’90s. She claimed little to no English language abilities, and she ratedherself as a 1 on the scale of 1 to 5.
When asked about the diagnostic experience of her child, she answered by saying that she began by going to the Grupo de Apoyo de Padres para Padres, and through this support system, she learned how to control the condition and how to treat her child’s present problems.
When discussing what obstacles she primarily faces when obtaining medical attention for her child, she contended that language barriers are the biggest obstacle and that “some appointments are easy and some are harder.” This was especially true in the beginning of the diagnostic process when coming to terms with the difficulties of not speaking the same language as the professionals. Carla even claimed that in the beginning her understanding of her child’s diagnosis and access to certain resources was inhibited by this language barrier, “especially when there aren’t interpreters” because one needs to wait until one is available, which can be an extremely long process.
Despite the many arduous barriers that Carla faces when navigating her child’s needs, she still claimed that she has faith in the U.S. healthcare system and that she does not use alternative methods to compensate for any deficits in care. When asked what advice she would give a healthcare professional caring for a family similar to hers with the same diagnosis, she answered that she would simply advise them to explain the family’s situation completely so that they can have a complete understanding of their child’s diagnosis and options.
Daniela
Our next participant, who I will refer to as Daniela, is a mother of 10 who moved to the United States from Mexico in 2000. She reports no English language abilities, electing a 1 on the scale from 1 to 5. Her daughter received a rare diagnosis of Rubenstein Syndrome around 2008, just 8 years after moving to the United States.
Upon asking about her child’s initial diagnostic experience, Daniela shared that it was very difficult and that she does not want to remember it. She adds, “sometimes you think that you don’t know how to get the resources or even the therapies” that your child needs. However, when asked what resources served the greatest benefit to her, Daniela contended that since participating in the support group (el Grupo de Apoyo de Padres para Padres), she has learned an immense amount, but it is still very difficult, especially in regards to language barriers. She claims, “I would have never found the resources that I needed if I didn’t join the support group, because through the group… I learned that there are many resources to help our children with disabilities.”
When asked about her trust in the U.S. healthcare system, she stated that at first “it was very difficult because [she] already had a pediatrician for several years that wasn’t able to diagnose” her daughter. Eventually, she moved to a new doctor, with whom she had a much better experience, for he was able to provide a diagnosis and offer several resources. However, she additionally asserted that, even with the new doctor, there have been issues, for example being told that her 5-year-old daughter needs an urgent eye surgery yet not providing them with an appointment for said surgery until over 6 months. She then asserted that even with these changes in provider she is still struggling and that she believes that “all of us with children with disabilities are battling with either the therapies or with the specialists” because it is always a struggle to learn about the therapies and resources that work best for your child and as soon as you feel comfortable with one it switches to another.
When asked about what obstacles she is facing in her process of finding medical assistance for her child, she employed a diverse array of answers that were both within and outside the scope of the U.S. healthcare system. Daniela mentioned that a major obstacle is with insurance because “they don’t want to cover some therapies.” She even insinuated that the doctors do not always refer her to resources that would be covered by her insurance. She then quickly asserted that language barriers are major obstacles “because sometimes you can’t talk or communicate with the [providers].” Additionally, Daniela mentioned that her child’s school is also a major difficulty “because there were lots of problems and… they no longer wanted to educate [her] daughter anymore.” Then, however, she mentioned that she is thankful for these struggles because “God gives us these obstacles so that we appreciate and value all that we have” and “thank God we have obstacles in this country.” She shared how her family in Mexico is unable to find a school that is willing to take in her nephew because of his many delays, further illuminating the extent of her gratitude in the face of countless hardships.
I then asked Daniela if she believes her comprehension of her child’s condition or access to related resources is inhibited by her English language competency. To this, she responded with a strong yes and that she has not had many good interpreters. Daniela claimed that many times she takes the burden upon herself and does her best to understand using tools like the computer, friends or even with the assistance of God who helps her to “understand a bit of the explanations when it comes to [her] daughter.” Daniela primarily mentioned the inconsistency of the language assistance services in healthcare settings, claiming that some interpreters are “good and others are bad,” yet in the face of these inconsistencies, she remains steadfast in doing what is necessary to surmount these obstacles.
Daniela was then asked what she would say to a family in a similar position to hers whose child has just received the same diagnosis as her own. She quickly responded by suggesting for them “to see if their insurance can cover everything,” “for example the therapies.” She adds the recommendation that, if necessary, they change insurances to get their child these resources because it will help them “learn and grow.” Daniela continues to explain the importance of getting an early diagnosis: “The earlier you receive the diagnosis the sooner you can get started on finding a specialist and the appropriate resources.” She mentioned an American family that did not get a timely diagnosis, and, resultantly, their child must be on dialysis and is at high risk of having a stroke. When extrapolating this question to pertain to advice for the medical professionals caring for the hypothetical family, Daniela provided an extensive answer that essentially enforced the need for honesty and transparency from your healthcare professionals and for them to provide timely services. She concluded the interview by iterating the importance of learning and growing alongside your child. She illuminated the reality that this is a learning process not just for the child but for the family, doctors and community around them.
Estefany
Our next interview is with a single mother, whom I will refer to as Estefany, who immigrated from Nayarit, Mexico and has lived in the United States for over 21 years. At the age of just 6 months, her daughter received her diagnosis of severe Autism with an intellectual disability, resulting in her being primarily non-verbal. Estefany rates her English language competency as a 2 on a scale of 1 to 5, claiming that she knows very little English.
Upon discussing the initial diagnostic experience of her child, Estefany shared that “it was very, very sad and [she] didn’t expect it”, and that she “didn’t understand many of [her] child’s diagnoses.” “I didn’t have support from anyone even the father,” she explains, and “I felt very sad inside because, well, this was my first daughter, and I didn’t understand her diagnoses.” Estefany then elaborated that she is slowly learning more and more about her daughters’ condition and how to best support her, but, as a single mother, the process is not easy.
When asked about her confidence in the U.S. healthcare system, she responded that she trusts the advice of the doctors and that her daughter has been referred to many specialists, such as those for the heart and intestines since she is 18 and still requires the use of diapers. She also added that the doctors referred her to many specialists and programs, such as the Sacramento Regional Center, however “they were referring different specialists than the specialists that my daughter needed.”
Next, I asked Estefany what obstacles she has faced in the process of finding professional care for her child and she quickly and thoroughly responded that the biggest barrier she faces is not knowing English. She states that because of this “I can’t have good communication with the doctors” and resultantly, “I have lost appointments” and “didn’t understand what they were telling me about my daughter and the insurance as well.” “They didn’t assure me if the translators were going to arrive or not,” she continues, “and sometimes I had to bring someone” or even “contest on the phone” to have a better translator. As a result of this significant barrier, Estefany is determined to learn English, stating “I already decided that I have to learn it for my daughter.” “It is very frustrating for us Hispanics or people that don’t know English. It is very frustrating and is very sad… to miss important appointments that your children need, and you even doubt yourself for not knowing it.” “It is very important that we clearly understand our doctors because how my child is doing depends on it and that she is receiving the attention that she needs as well.” When further discussing the barriers, she faces due to language incongruency she discloses that “many people get mad with you because you don’t know English and by force, people try to get you to understand and even get upset with you until… they make you feel very bad.” “The truth is,” she continues, “I have even had to cry from the sadness from having to leave the place because there is no one there that can help me understand what is happening or to explain the situation to me.” “I have had to suffer… from how badly people see me… because they make me feel horrible that I can’t understand what they are telling me.”
When asked about advice she would give to a family similar to hers that has just received the same diagnosis as her daughter, she contested that this is not much of a hypothetical because she runs into this situation often. She stated, “well there are many families that don’t know about the programs and resources for children that have problems,” so “I give them the information and offer to give them a lift and take them to the office or make the needed call so their child can start receiving what they need.” She elaborated that she likes to do this for people because for a long time she was learning from other people and wants to do the same for others who could use the extra help. When asked what advice she would give to the doctors of this not-so-hypothetical family, she claimed that she would tell the doctors to do their best to care for the child and to listen to the family completely to ensure that they know exactly what their child’s condition is and the specific specialists, therapies and resources that they need.
Estefany was then given the opportunity to share any information that she did not feel was adequately covered. She took this opportunity to its fullest and continued to share an immense amount about her story and journey. In this, she disclosed her battles with her mental health because of her circumstances and illuminated the reality that there are people who, as a result of these same mental health tolls, “don’t look for resources for their child and prefer to stay home in order to avoid the shame” associated with the previously discussed barriers. “Discrimination, the experiences that one goes through, are something ugly, something horrible, and well since I am a single mother, I don’t have support from anyone. I have experienced many horrible things with my child, but I believe that there are families that don’t expose themselves and suffer through these situations… and they don’t do anything for their child.” She added,“I have encountered people at social security in hospitals who tell me about their situations, so I give them my number, but they never call… people remain forgotten with their children and prefer to live like this because… they don’t know how to read or write,” and the burden is too much for them to handle. “There are people who prefer not to suffer and don’t search for help to not endure ugly experiences,” she concluded.
Estefany then transitioned into mentioning more specific struggles that she has faced regarding her child’s condition, stating that there is an immense amount of time and effort that is needed to simply make an appointment. More specifically, the numerous phone calls she needs to make and the struggles with insurance companies. She provided a specific example of when her insurance company did not allow her to advocate for her child since her daughter had recently turned 18 and was a legal adult. “They kept saying they needed to speak to my daughter,” she claimed, and resultantly she had to continuously disclose her daughter’s condition and her non-verbal status. Estefany tirelessly fought the insurance company’s threats to negate the insurance coverage that her daughter desperately needed, all while battling the obstacle of communicating in a language that is not hers. “Thank you for taking the time to hear our truth,” she concludes, “because many people prefer to stay not doing anything… It gives me courage.”
Florence
Our next participant, Florence, is a mother of a son diagnosed with Translocated Down syndrome, who first received his diagnosis just four months after birth. Florence is from Hidalgo, Mexico and has lived in the United States for close to 40 years. She describes her English language competency as context-dependent but categorizes it as around 5% or a 1 on a scale of 1 to 5, indicating little to no language abilities.
Florence described her child’s diagnostic experience as very difficult, for upon his birth they did not realize anything was wrong, and “there were no other people with sick children in [her] circle of friends to speak to” about the diagnosis. “I didn’t go out, I didn’t meet anyone and he got pneumonia every two weeks,” she said. Florence explained that she continued to be in and out of the doctors for 6 years and expressed the depth of her grieving the reality that her child was going to pass away. Eventually, the doctors referred her to different services, but she was unable to utilize them because she does not know how to drive. As a result, she was assigned a social worker that would come from San Francisco and tell her about the different services, but she still struggled to understand them even though they were in Spanish. When discussing problems regarding her son’s education, she stated that “my closed mind didn’t think he would be able to learn anything.” Florence then explained the isolation she began to impose upon herself due to the scrutiny, which even came from her husband, and from “everyone wanting to see how my son was doing.”
She elaborated that she felt consumed by the pity that people were imposing upon her child, while she did notfeel sorry for him because it is a part of who he is. “I didn’t want him to endure the constant judging, so we stopped going out and grew even more isolated.” Florence elaborated that she even stopped bringing him out to stores and parks because he often had epileptic episodes, and people would always insist on calling an ambulance, which wasneither affordable nor sustainable for the frequency of his condition. Their isolation was exacerbated by her son’s condition because bringing him out of the house would cause serious health problems. In 2009, he would get very sick, where the cold air itself became a threat to his health.
Florence argued that the biggest obstacle she faces regarding navigating the U.S. healthcare system is the language barrier. However, the bulk of her response referred to financial burdens. Florence has had to pick up night shifts on top of her primary job in order to pay rent, and, when compounded with her other children’s responsibilities and caring for their education, she is left with very little time to dedicate to her son. Florence then discussed her grievances with insurance and the coverage that her son can receive, as well as the resultant lack of flexibility for seeing specific providers and specialists.
When asked what advice she would give to a family similar to hers that has just received the same diagnosis as her son, Florence endeavored on a lengthy response. She began by claiming that she would “tell them of the medications that are best” and help them navigate the best therapies. More importantly, she stated, “I would assure them of their child’s ability to do many things,” referring primarily to their abilities to learn. She then provided many specific pieces of advice she has learned regarding specific care methods and even provided references to a family in Mexico with children with the same diagnosis that have lost children as a result of untimely care. Florence concluded her response with another reference to her guilt surrounding her lack of confidence in her child’s abilities. She referenced how her husband would often not help with certain resources that were inaccessible to her due to her inability to drive because he did not think “that the child could learn anything,” all while still battling the countless additional obstacles in her way.
Gabriella
Our final participant, who we will refer to as Gabriella, immigrated to the United States from Aguascalientes, Mexico just under 30 years ago. Gabriella rated her English language competency as a 1 or 2 on a scale of 1 to 5, insinuating a primarily Spanish-centric communication style. Her daughter “has several diagnoses,” she claimed, “partial paralysis, Autism and severe mental retardation.” She explained that there was not necessarily one diagnostic experience but rather rolling and continuous additions that culminated with her diagnosis of Autism.
Gabriella divulged how traumatic the experience of learning of her daughter’s disabilities was, for “she was moving around like most babies but then she stopped.” Upon comparing her development to her other children and to her niece born within 20 days of her daughter, she realized that something was wrong. She was passed around to a range of specialists before they were able to give her any information: “It took them a long time to explain everything and for me to be able to process everything.” But, before she was ready, the process of navigating all the possible therapies to identify which would be best for her daughter had already begun.
Upon asking Gabriella about her confidence in the U.S. healthcare system she divulged that she is thankful for the opportunities she was presented but then shared points of contention like how “because of [her] daughter’s age she no longer qualified for insurance coverage” in various circumstances. “This is what kept [her] from accessing many therapies,” such as Music Therapy, which was working very well for her daughter but had to be paid out of pocket because it was not covered by her insurance policy.
Today, she claimed, she has a much better understanding of how to navigate the intricacies of the U.S. healthcare system and more specifically the associated insurance policies. She elaborated on a specific example by saying, “if I paid out of pocket, they would see me within the hour or at the time that I wanted and if I paid with my daughter’s insurance, they would put me in with all the people that also have that type of insurance.”
Gabriella shared that the biggest obstacles she faces when accessing care for her daughter are language barriers and insurance. “Sometimes the barriers are due to language and sometimes they are due to incorrect translations [provided by the interpreter]. So, you do not understand something and then they say, “okay well you agree with what the doctor told you, sign here…Then there is a pressure to sign so you have to comply.” Adding to this example, she emphasized that language is the biggest barrier during appointments and when asking for resources. For instance, there was one notable appointment where the doctor insisted on her daughter being referred to Down syndrome services. “She does not have Down syndrome,” Gabriella said. “The doctor has studied for so long and yet doesn’t know her condition or at least doesn’t read her file.” She also shared that the amount of time that doctors dedicate to their patients is often inadequate. For example, upon scheduling an appointment with her daughter’s psychiatrist to discuss how some of her five medications are affecting her, the office required Gabriella to set up and pay for another appointment because the doctor “had to see another patient at 4:30.” “Some of these professionals don’t have any ethics,” she claimed.
Lastly, when asked what advice she would give to another family, similar to hers, that has just received the same diagnosis, Gabriella responded that she would help them find the resources that they need. She put a great amount of emphasis on referring them to a support group like that of el Grupo de Apoyo de Padres para Padres. Even claiming that “there you learn about the type of services that exist for your child’s diagnosis.”
Summary
As reflected in the testimonies of the seven mothers interviewed, there is a notably strong sense of trust in the U.S. healthcare system. However, this trust coexists with significant obstacles to accessing care – foremost among them, language incongruency. Every participant identified language as a major barrier, often citing the inconsistency and unreliability of translation services. Insurance-related challenges also emerged prominently, particularly in the narratives of Estefany, Florence, and Gabriella. These included difficulties navigating complex insurance systems and securing coverage for necessary specialists and services.
Gabriella voiced a key concern regarding the lack of time and attention many physicians provide, noting that doctors often fail to fully listen to or educate their patients about their care and diagnoses. Florence and Estefany shared the emotional toll of these experiences, describing feelings of isolation and the mental health impacts of discrimination. Florence also highlighted the internalized stigma surrounding disability, and the damaging effects of diminished expectations for her child’s potential.
Despite these challenges, all participants pointed to el Grupo de Apoyo de Padres para Padres as a vital resource. This support group played a central role in helping them better understand their child’s condition, connect with other families, access essential services, and normalize their experiences through community support.
Results
The majority of interview participants expressed both gratitude for and trust in the U.S. healthcare system – an encouraging observation, particularly given the long history of marginalization endured by these communities. Furthermore, a wide range of resources is available to support immigrant and disabled populations, suggesting that the root of ongoing medical disparities does not lie solely in the availability of services. Resources exist, and trust is present – yet systemic barriers persist, continuing to obstruct access to equitable and quality care. These barriers must be identified and addressed through structural changes and targeted interventions.
It is important to acknowledge that the perspectives shared in this study, while valuable, do not fully represent the breadth of experiences within immigrant and disabled communities – nor the complex intersection between them. The seven individuals interviewed offer a window into shared struggles, but further research is essential to capture the diversity of voices within this population. This study focused specifically on monolingual Spanish-speaking immigrants from Latin American countries, one cultural subset of the broader immigrant community. Additionally, because all participants were women who resided in the greater Sacramento area, the study does not capture gender differences or the unique challenges faced in more rural or geographically isolated settings.
Language Incongruency and Cultural Competency
I employ the term language incongruency to emphasize that there is no universally “correct” language for any given space or individual. Rather, language incongruency occurs when an individual's language abilities do not align with the dominant language of their geographic location. As noted earlier, all seven interview participants identified language as one of the most significant barriers to accessing healthcare for their children with disabilities.
While language inclusion has improved substantially over the last 20 years, barriers remain due to ongoing language incongruency. As the participants emphasized, these barriers can be mitigated through various strategies. One of the most commonly used – and arguably most effective – approaches involves bringing an individual’s primary language into the English-dominant space. This is typically done through translated written materials, interpreters, or medical translators. However, as multiple participants described, these services are often inconsistent and come with burdensome wait times and logistical challenges, especially when accessing specialist care. Increasing the number of available, qualified interpreters in healthcare settings could reduce the additional burden associated with language assistance.
However, interpreter availability alone does not address the deeper stigma surrounding limited English proficiency – a theme illustrated in Estefany’s and Florence’s stories. Alleviating this stigma requires a broader cultural shift within healthcare settings: one that normalizes linguistic diversity rather than treating it as an exception. Though difficult, this transition can be supported through the integration of language inclusion within broader cultural competency efforts (CDC 2023). As noted in the literature review, there is a severe lack of national standards for training healthcare professionals in working with disabled patients, and this gap extends to culturally competent care as well. Mandating training in cultural competence would underscore the diversity of patient populations and the need for individualized, patient-centered care – including meaningful language accommodations.
However, this approach alone does not directly address the stigma associated with limited English proficiency, as illustrated by Estefany and Florence’s experiences. To truly alleviate this stigma, there must be a cultural shift within healthcare settings – one that normalizes language diversity rather than treating it as an exception. While this transition is far from simple, I believe the challenge of language incongruency can be addressed in tandem with broader cultural competency efforts (CDC 2023).
As noted earlier, there are few to no national standards guiding healthcare professionals on how to provide care to disabled patients. This gap is mirrored in the insufficient training on culturally competent practices. Implementing mandatory training for healthcare providers on cultural competence would emphasize the diversity of patient populations and reinforce the importance of personalized, patient-centered care – including accommodations for language needs.
Another promising avenue is the integration of cultural liaisons – sometimes referred to as patient advocates – whose primary role is to support patients in receiving care that aligns with their personal needs and preferences (Patient Advocate Foundation 2018). These professionals can help bridge gaps by translating medical terminology, simplifying complex topics, consolidating relevant resources, and ensuring treatment plans are aligned with patient expectations. This role need not exist separately from current healthcare staff; rather, the principles of patient advocacy and cultural mediation can be woven into the training of nurses, physicians, interpreters, and other frontline professionals (Juckett 2014). Still, creating a specialized position may enhance accountability and dedication to this mission.
Cultural liaisons must be equipped not only with biomedical knowledge but also with a deep understanding of systemic inequities and strong cultural competency skills – fields that have historically existed in tension. Nevertheless, the emergence of such a role signals a shift toward a more human-centered model of care. This approach need not be limited to cultural or linguistic communities; it can and should be extended to LGBTQIA+ individuals, neurodiverse populations, and people of diverse religious backgrounds. By investing in culturally competent care, the healthcare system affirms the value of difference and works to dismantle stigma within medical environments.
Why is this patient-centered model of care so vital? Contemporary medicine largely focuses on restoring the body to a "normal" or "healthy" state – treating illness as a mechanical malfunction to be fixed. But for many disabled individuals, whose bodies may never conform to such definitions, this model is alienating and inadequate. While some may wish to eliminate the burdens of their condition, the medical model often enforces a narrow concept of the “normal” or “clean” body, suppressing biological, psychological, and social diversity (Fisher 2007). A culturally competent, patient-focused approach rehumanizes care by recognizing that patients are the authors of their own health journeys. It offers individuals the freedom to define what “healthy” means to them and to pursue it in a way that honors their unique experiences and values.
Community-Led Support
When asked about the resources that aided them most, interview participants overwhelmingly identified el Grupo de Apoyo de Padres para Padres as one of the most influential. Community-led support provides not only access to and understanding of available resources but also the normalization of one’s lived experience. While this may appear to be a minor factor, it encompasses several essential aspects of the human condition. Creating a space where individuals can find solidarity within shared hardships fosters an environment in which members empower both themselves and each other. In doing so, they come to internalize that their own or their child’s condition does not make them inferior, but rather reflects one point along the broader spectrum of human diversity.
Receiving a diagnosis often proves to be an isolating experience. Yet humans are inherently social beings, and the healing power of community plays a vital role in the delivery of quality care. Support groups, such as el Grupo de Apoyo, represent a low-cost intervention that returns agency and collective strength to communities historically excluded from the healthcare system and broader society.
As described by participants, this community-led support enabled them to discover resources, receive healthcare advice, validate emotions, and better understand the nuances of their child’s condition. These same benefits can be extended to countless other communities and populations. Creating space for grassroots peer support not only offers emotional solidarity but also provides a platform to share practical knowledge – such as insurance navigation, specialist referrals, and condition-specific insight. In doing so, support groups help reduce isolation while addressing several of the systemic barriers faced by immigrant and disabled populations.
Discussion
This work makes clear that the need for further research is ongoing. In particular, studies that center the intersection of disability and immigration are both lacking and urgently needed. The voices of individuals who are least represented – within both broader society and institutions of power – must be elevated and meaningfully integrated into research, policy, and care delivery.
Redirecting the focus of healthcare toward culturally competent, patient-centered care requires intentional advocacy – especially from those who benefit from the current system. This shift may be uncomfortable, but it is essential to building a medical future that moves beyond one-size-fits-all solutions and instead embraces and honors the diversity of human experience.
Findings from this project underscore the value of community-led support, culturally informed care, and a deeper awareness of the heterogeneity that exists within all patient populations. While this study focuses on immigrant families navigating disability, the proposed interventions – greater cultural competency, empowerment through peer networks, and structural change within the healthcare system – have the potential to benefit countless other marginalized groups.
True advocacy for disabled and immigrant communities requires a clear-eyed recognition of the intersectionality that shapes their experiences. Only by centering this complexity can we foster a healthcare system that offers equitable, individualized, and dignified care for all.
References
Abdullahi, I., Short, S.E., Kourouma, M., Hoy, E. and Nguyen, M. (2019) ‘Risk of developmental disorders in children of immigrant mothers: A population-based data linkage evaluation’, The Journal of Pediatrics, 204, available:https://doi.org/10.1016/j.jpeds.2018.08.047.
Abdullahi, I., Short, S.E., Kourouma, M., Hoy, E. and Nguyen, M. (2017) ‘The risk of neurodevelopmental disabilities in children of immigrant and refugee parents: Current knowledge and directions for future research’, Review Journal of Autism and Developmental Disorders, 5(1), 29–42, available: https://doi.org/10.1007/s40489-017-0121-5.
Akincigil, A., Sanchez Mayers, R. and Fulghum, F.H. (2011) ‘Emergency room use by undocumented Mexican immigrants’, The Journal of Sociology & Social Welfare, 38(4), available:https://scholarworks.wmich.edu/jssw/vol38/iss4/3.
Centers for Disease Control and Prevention (CDC) (2019) Addressing gaps in health care for individuals with intellectual disabilities (CDC Public Health Grand Rounds, October 15), National Center on Birth Defects and Developmental Disabilities, available: https://archive.cdc.gov/www_cdc_gov/grand-rounds/pp/2019/20191015-intellectual-disabilities-H.pdf. [accessed November 2020]
Centers for Disease Control and Prevention (CDC) (2020a) ‘Disability impacts all of us infographic’, available:https://www.cdc.gov/disability-and-health/articles-documents/disability-impacts-all-of-us-infographic.html?CDC_AAref_Val=https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html. [accessed January 2021]
Centers for Disease Control and Prevention (CDC) (2020b) ‘Disability and health overview’, available:https://www.cdc.gov/disability-and-health/about/?CDC_AAref_Val=https://www.cdc.gov/ncbddd/disabilityandhealth/disability.html. [accessed December 2020]
Centers for Disease Control and Prevention (CDC) (2020c) ‘Facts about developmental disabilities’, available:https://www.cdc.gov/child-development/about/developmental-disability-basics.html?CDC_AAref_Val=https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html. [accessed January 2021]
Centers for Disease Control and Prevention (CDC) (2021) ‘Disability and health data systems (DHDS)’, National Center on Birth Defects and Developmental Disabilities, Division of Human Development and Disability, available:https://dhds.cdc.gov. [accessed May 17, 2021]
Centers for Disease Control and Prevention (CDC) (2023) ‘Cultural understanding and awareness’, available: https://www.cdc.gov/std-ips/php/about/cultural-understanding-and-awareness.html. [accesssed December 2020]
Ervin, D.A., Hennen, B., Merrick, J. and Morad, M. (2014) ‘Healthcare for persons with intellectual and developmental disability in the community’, Frontiers in Public Health, 2, available: https://doi.org/10.3389/fpubh.2014.00083.
Fisher, P. and Goodley, D. (2007) ‘The linear medical model of disability: Mothers of disabled babies resist with counter-narratives’, Sociology of Health & Illness, 29(1), 66–81, available: https://doi.org/10.1111/j.1467-9566.2007.00518.x.
Fujiura, G.T., Li, H. and Magaña, S. (2018) ‘Health services use and costs for Americans with intellectual and developmental disabilities: A national analysis’, Intellectual and Developmental Disabilities, 56(2), 101–118, available:https://doi.org/10.1352/1934-9556-56.2.101.
Guendelman, S., Schauffler, H.H. and Pearl, M. (2001) ‘Unfriendly shores: How immigrant children fare in the U.S. health system’, Health Affairs, 20(1), 257–266, available: https://doi.org/10.1377/hlthaff.20.1.257.
Harwood, R.L., Schoeny, M.E., Schulz, M., Tolan, P.H. and Szapocznik, J. (2012) ‘Autism spectrum disorders and developmental disabilities in children from immigrant families in the United States’, Pediatrics, available: https://doi.org/10.1542/peds.2012-0900r.
Juckett, G. and Unger, K. (2014) ‘Appropriate use of medical interpreters’, American Family Physician, 90(7), 476–480, available: https://pubmed.ncbi.nlm.nih.gov/25369625/.
Khanlou, N., Haque, N., Sheehan, S., Jones, G., Shirazian, T., Fitch, P. and Vazquez, L.M. (2015) ‘Stressors and barriers to services for immigrant fathers raising children with developmental disabilities’, International Journal of Mental Health and Addiction, 13(6), 659–674, available: https://doi.org/10.1007/s11469-015-9584-8.
McDermott, S., Royer, J., Mann, J.R. and Armour, B.S. (2018) ‘Factors associated with ambulatory care sensitive emergency department visits for South Carolina Medicaid members with intellectual disability’, Journal of Intellectual Disability Research, available: https://doi.org/10.1111/jir.12517.
Pew Research Center (2017) ‘Key findings about U.S. immigrants’, available:https://www.pewresearch.org/fact-tank/2020/08/20/key-findings-about-u-s-immigrants/. [accessed November 2020]
Pondé, M.P. and Rousseau, C. (2013) ‘Immigrant children with autism spectrum disorder: The relationship between the perspective of the professionals and the parents' point of view’, Journal of the Canadian Academy of Child and Adolescent Psychiatry, 22(2), 131–138, available: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3647629/.
Special Olympics (2018) Healthy athletes prevalence report 2018, available:https://media.specialolympics.org/resources/research/health/2018-Healthy-Athletes-Prevalence-Report.pdf. [accessed January 2021]
Zong, J. and Batalova, J. (2018) ‘Mexican immigrants in the United States’, Migration Policy Institute, available: https://www.migrationpolicy.org/article/mexican-immigrants-united-states-2017. [accessed November 2020]