“We Find a Way” Challenges and Facilitators for Health Care Access Among Immigrants and Refugees With Intellectual and Developmental Disabilities Matthew Bogenschutz, MSW, PhD

Background: Immigrant and refugee populations and people with disabilities are known to have inequitable access to a range of health services. Very little study has been undertaken, however, about immigrants who have disabilities and their experience of the American health care system. Research Design: This qualitative study seeks to discover the particular challenges that immigrants with disabilities face when accessing health care, and the facilitating factors that assist them in this process. A complex multicase study design was utilized, and included purposively sampled individuals from 3 different immigrant communities, having an array of developmental disabilities. Interviews and participant observation provided the data that were analyzed in NVivo9 using a conventional content analysis approach. Results: Findings from this study suggest strong resilience among immigrant families with a member with a disability, as they continue to seek help despite experiencing confusion in navigating a complex health care system. Factors challenging access included difficulty finding accurate information on insurance and service providers, troubles with coordinating multiple specialist services, and a lack of cultural competence in all levels of health service provision. Access to health care services was facilitated by linguistically and culturally sensitive practitioners, favorable comparisons to the country or origin, and systems such as schools that helped to coordinate care. Conclusions: Much can be done to integrate and improve health services to immigrants with developmental disabilities. Emerging models such as medical home may assist with coordination, and improvements in communication patterns could help to improve service access and outcomes. Key Words: developmental disability, immigrant and refugee, health care access, qualitative methods

From the Virginia Commonwealth University, School of Social Work, Academic Learning Commons, Richmond, VA. Presented at the Conference of the Association of University Centers on Disabilities, November 18, 2013, Washington, DC. Supported by the UCare Fund of the Minnesota Medical Association. The author declares no conflict of interest. Reprints: Matthew Bogenschutz, MSW, PhD, Virginia Commonwealth University, School of Social Work, Academic Learning Commons, 3rd Floor, P.O. Box 842027, Richmond, VA 23284. E-mail: [email protected] Copyright r 2014 by Lippincott Williams & Wilkins ISSN: 0025-7079/14/5210-0S64

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lthough knowledge about health care access among immigrants and refugees and people with disabilities has expanded in recent years, health care for immigrants and refugees with disabilities has largely gone unstudied. This study offers a qualitative investigation into challenges and facilitators affecting this population’s access to health services, and is informed by 2 distinct strains of the literature.

HEALTH SERVICE ACCESS AND IMMIGRANT STATUS Accessing health care is a challenge to many immigrants and refugees. Although there are many reasons, commonly cited barriers include uninsured status,1,2 limited access to a regular health care provider,3,4 and lack of awareness of available resources.5 Many immigrants are excluded from public insurance programs such as Medicaid and Medicare until they are naturalized, meaning many immigrants rely exclusively on the marketplace for their health care needs,6,7 except when states exercise options to enable access to programs such as the State Children’s Health Insurance Programs.8 This becomes particularly troublesome as both documented and undocumented immigrants in the United States are less likely to obtain and more likely to lose health insurance, compared with the general population.9,10 Limited English proficiency also inhibits access to health care,6 even though policy requires medical providers to ensure equal access to services for people with limited English proficiency.11,12 Focus groups with Chinese and Vietnamese immigrants found that respondents preferred medical providers who take culturally grounded medical practices into consideration, and that the respondents placed importance on the use of linguistic interpreters.13 Despite emphasis on interpretation, patients who use interpreters remain more likely to have unanswered questions than language-concordant patients.14 Finding initial access to a health care provider is often facilitated through intraethnic social networks.15,16

HEALTH SERVICE ACCESS AND PEOPLE WITH DISABILITIES As is the case with immigrant communities, people with disabilities experience challenges accessing health supports. Lack of consumer and family familiarity with service Medical Care

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systems, particularly among cultural minorities17 and lack of availability of generalist and specialist health care providers with adequate knowledge of disability-related issues,18–20 are key contributors to access issues. Although discrepancies in access to health care services seem to affect most individuals with disabilities, access to specialist services is particularly limited for people with autism spectrum disorders.21 Review investigations of people with disabilities in the medical system reveal that, compared with the general population, they have less access to prevention services,18,22 fewer health maintenance visits,23 contributing to a series of documented disparities in health outcomes.24 Communication factors also play a role in equitable access to health services for people with disabilities, as health care providers do not allow extra time for communication, do not make communication accommodations, and do not assist people with disabilities in understanding medical terminology.22,24 The current investigation sought to answer 2 main research questions: (a) what factors present the greatest challenge to health care access, and (b) what are the factors that help immigrants with disabilities facilitate health care access.

METHODS This project utilized a complex multiple case study design. Nine case studies were conducted, each consisting of 3 components: (a) hour-long interview about health care access, (b) hour-long interview about social service access, and (c) observation of the participant as they attempted to access a health service. Multiple case study design was selected because it enables rich understanding of human phenomenon within real-life contexts25 and because the method is well suited to the elucidation of the ethnographic present.26 This study was approved by a university’s institutional review board.

Health Access for Immigrants With IDD

(or refugee) and as having an IDD, as record review to identify formal diagnoses was outside the scope of this study. Participant recruitment took place through the Project Advisory Committee (PAC). PAC members referred potential families to the researcher who screened them for inclusion. After initial screening, a purposive sampling approach was taken to secure a final sample with an array of disabilities, migration experiences, and participant ages that represented those of the focal populations, while equally representing each. Recruitment continued until stable themes emerged in the analysis, representing data saturation.

Profile of Participants The sample contained 9 participants, 3 each from the Hmong, Mexican, and Somali communities in 1 metropolitan area in which these were the main immigrant populations. A demographic profile of participants may be viewed in Table 1. Pseudonyms are used in all references.

Data Collection Protocol Development The interview protocol used for this study was developed in collaboration between the researcher and the PAC. The PAC consisted of advocates and service providers representing each of the 3 targeted ethnic populations. PAC members and the researcher met twice to generate potential lines of inquiry, and then refined those to the final list of questions for the interview protocol. PAC members also vetted questions for cultural relevance and interpretation strategies. The protocol contained 6 questions designed to elicit information about what factors helped or hindered access to services, how their disability and ethnicity influenced care access, and specific experiences seeking care.

Interview Administration

Participants Sampling For the purposes of participant selection, the definition of intellectual and developmental disability (IDD) from the Developmental Disabilities Act was used. This definition stipulates that a mental or physical impairment must manifest by age 22 and be expected to remain indefinitely, resulting in significant functional impairment. Potential participants were required to self-identify as an immigrant

Each of the 9 families participated in 2-hour-long interviews. In all cases, a parent of the individual with IDD was present, and perspectives were elicited from all family members, even when the person with IDD was the core respondent. The researcher sought to balance the desire for self-report with the reality that several participants had limitations in self-report capacity which typically limits utility on complex issues.27 It is known that proxy report may not always fully recognize the subjective experience of the person with IDD.28 Interviews

TABLE 1. Participant Profiles Participant Pseudonym Pao* Mai Teng* Abdul* Fatima* Amina* Eduardo* Carlos Maria*






8 23 18 20 4 8 19 17 2


Hmong Hmong Hmong Somali Somali Somali Mexican Mexican Mexican

Autism Cerebral palsy Intellectual disability Cerebral palsy Spina bifida Autism Autism Autism Cerebral palsy/blind

Urban Urban Rural Urban Suburban Urban Urban Suburban Suburban

*Parent was the primary informant. F indicates female; M, male.


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were conducted by the researcher in the preferred language of each participant. Linguistically skilled disability advocates provided interpretation. Interviews with 6 families were conducted in the participants’ native languages and 3 used a mixture of the native language and English. Interviews were semistructured, with the interview protocol providing the guide, and space for additional discussion on issues of interest. Interviews were audio recorded, with the exception of 1 participant who declined to be recorded. This participant’s perspectives were documented using extensive notes from the researcher and interpreter.

Participant Observation Procedures Each family participated in an observation of their attempt to access a health service. Health service providers were contacted before the visit to obtain approval for the researcher and an advocate to attend the office visit with the participant. Fieldnotes were taken during each observation, documenting communication processes, use of interpreters, disability knowledge, and other factors. Observations included direct interaction with a health care professional and activity during check-in and check-out.

Analysis Before data were analyzed, recorded interviews were conceptually translated by bilingual disability advocates. Conceptual translation allows for interpretation of difficult ideas which may lose meaning in word-for-word translation,29 allowing meaning of statements to remain intact. The use of disability advocates as interpreters was important, as many disability-related concepts do not have direct translation. Although some loss of meaning is inherent in any translational process, this study’s methods were designed to retain as much linguistic integrity as possible. Translation and analysis occurred throughout the data collection process, and informed the completion of data collection. When themes were firmly established, data saturation was considered to be present, and enrollment of new participants ceased. A conventional qualitative content analysis approach was taken as data were analyzed using NVivo9, as the researcher wished to remain open to interpretation that arose from the data without imposing preconceived notions of what participants might state about their experiences.30 The analytic approach was chosen because it permitted flexibility in studying topics that have not been widely investigated in the past to derive initial conclusions about human experiences.31 Open coding provided the initial set of codes that were used for subsequent rounds of more targeted coding of the text which developed general themes comprised of interconnected codes. All coding was undertaken by the researcher. Notes from participant observation experiences were used to triangulate findings of the interviews, and provided a rich form of supplementary data. An initial draft of the analysis was shared with disability advocates, members of the PAC, and a subset of participants, selected based on availability. Because of the variable language skills of the participants, the draft results were presented visually in the form of a chart similar to Figure 1, supplemented with verbal

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descriptions of each theme, provided by the researcher. This member checking was critical in enhancing the trustworthiness32,33 of the findings.

RESULTS Results follow the previously stated research questions, seeking to find challenges and facilitators for health care access among immigrants with developmental disabilities. Major themes are summarized in Figure 1. Among the general themes, participants had a tendency to frame their health care access experience in terms of their ethnic identity more strongly than their disability identity, or that of their child. The negotiation of multidimensional personal identity, and the tendency to favor one aspect of identity over another, may contribute substantially to how a person seeks health care. In the narratives of several participants, ethnically based health beliefs informed decisions to seek (or avoid) treatments, whereas influences of disability were more subtle. In addition, analysis revealed major points of confusion about the American health system. Factually inaccurate statements about insurance, public assistance, medical procedures, and the nature of disabilities were commonplace. With dissemination of accurate information being limited in many immigrant and disability communities, participants relied heavily on word-of-mouth to build their knowledge of the health care system. Misinformation clouded the decisions of some families to seek health care treatments for their children with IDD.

Access Challenges Finding Information Among the most common challenges reported by informants in this study was in finding reputable health information. Difficulties finding information about insurance, whether public or private, was of particular concern shared by the majority of participants. Many participants, including Abdul’s sister, said they relied on word-of-mouth from other members of their ethnic community in order learn about health care and insurance options, even though this sometimes resulted in frustration and exclusion of disability-specific information. For at least 2 of the informants, the lack of information regarding service options and insurance resulted in service lapses lasting at least a year. Information access issues extended to finding health care providers. Participants frequently cited a long path of struggle and resilience in finding providers who were both attuned to the cultural preferences of the family and competent in providing disability-specific intervention. This struggle and resilience was exemplified by Eduardo’s mother: “You don’t know how much I suffered in order to get people to help him. I went knocking on so many doors trying to get answers. We find a way.” Difficulties finding accurate disability-specific information were exacerbated by language and interpretation challenges. Many service providers do not offer interpretation services throughout the appointment-making process, as the researcher witnessed while Pao’s mother tried r

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Health Access for Immigrants With IDD

Health Care Access for Immigrants with IDD

Facilitators for Access

Challenges to Access

Access to Information

Lack of Service Coordination

Limited Culturally Appropriate Services

Cultural & Linguistic Competence

Integration of Services

Cultural Reference Points

Insurance Information Hard to Find

Navigation of System is Difficult

Gaps in Trust

Native Language Essential

One-Stop Healthcare Venues

Comparison to Home Country's Services

Help Needed Interpreting Concepts

Little Coordination Available

Language Challenges

Provders Ask Questions about Culture

Informal Supports & Schools Help Coordinate

Happy to Have any Type of Help

Unsure Which Providers to Seek

Providers Lack Cultural Understanding of Disability

FIGURE 1. Summary of main themes.

to make an appointment with a specialist. The automated system had no option for Hmong language, and prompted her to enter numbers on the phone’s keypad. Not understanding how to navigate the menus, she hung up without making an appointment. Linguistically, many disability-specific terms do not have direct translation into other languages, leaving even skilled interpreters to provide lengthy descriptions.

Service Coordination Families reported frustration with having to navigate uncoordinated systems independently, with limited support. Further, because social service and health systems are distinct, families had to coordinate both within and across systems. In cases such as Abdul’s, in which his sister reported having services from 17 different professionals in the past year, the burden of this coordination was overwhelming. Transportation to appointments was also challenging, posing a challenge to service coordination as lack of transportation sometimes limited potential service providers to those in a small geographic area or within a short distance of a bus line. In the case of specialist services, which often have a limited pool of potential health care professionals, lack of transportation could be especially troublesome. Three of the families reported that they did not have a reliable transportation, and 2 reported that the vehicle they used could not accommodate the wheelchair used by the family member with a disability, making transportation for appointments daunting. In other cases, such as Eduardo’s, the family relied on public transit, which constrained choice of health care providers to those located on a bus line, making coordination of specialists r

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particularly challenging as options were limited. The commute from Eduardo’s home to one of his specialists took 90 minutes each way, with 2 transfers, causing his mother to miss an entire day of work.

Lack of Culturally Relevant Services The centrality of trust in the relationship between a service user and a service provider cannot be overstated. Participants were not willing to continually access services that disregarded their cultural needs. For immigrants with IDD and their families, trust is contingent upon the balance of American notions of professional practice, including competency in disability-specific issues, and honor of an individual’s culture. Often, however, these elements were unbalanced, as families reported that professionals often disregarded cultural needs in favor of American medical practices. Although each family dealt with this tension uniquely, a common resignation is summarized by Teng’s father: “I do believe [physicians] understand, but since they have their own beliefs about disabilities it is difficult to make them understand your own beliefs. So at times we just have to let it be.” A story shared by Mai illustrates the importance of balancing cultural understanding with quality care, and the consequences when only medical issues are considered. Shortly after arriving in the United States, her doctor recommended a surgery. As Hmong culture prohibits cutting the skin, Mai’s mother declined the operation. The physician contacted child protective services, which threatened to remove Mai from the family if they did not consent. Fearing separation, Mai’s mother approved the operation, but the www.lww-medicalcare.com |



events left Mai and her mother mistrustful of the medical profession, and she still tries to avoid any type of professional intervention, even when ill. This story underscores the importance of understanding IDD within the context of culture (and understanding culture in context of IDD).

Access Facilitators Cultural and Linguistic Competence Informants stated that an important factor to facilitate access to health care was a culturally and linguistically competent service provider. They were happiest when the cultural and linguistic competence extended to all aspects of the service process. Two Somali families used the same primary clinic, and related their positive impressions. One of the physicians was Somali, interacted with people with IDD in a culturally grounded manner. Interpreters had special training about certain disabilities, and took extra time after the physician’s visit to explain treatment plans in depth. The receptionist was Somali, so making appointments was easy. The primary nurse in the clinic, a white woman, worked hard to understand the needs of Somali children with IDD, and asked families lots of questions. Practitioners’ skilled use of interpreters was effective in facilitating continued access to service. According to Maria’s father, a good interpreter, “helps me understand when [Maria] needs to go to the doctor again, and what I should do for her until then.” Mai stated that she preferred doctors who give the interpreter enough time to speak, without rushing them, as it can be hard to understand medical ideas related to her disability when explained in Hmong.

Service Integration Because most people with IDD who informed this study had health care needs that required high levels of coordination, a strong preference for “one-stops” where many services are provided in 1 location was expressed. This facilitating theme encompassed provision of health care services directly, as well as indirect coordination of services. Indirect provision of coordination was often facilitated through schools or faith communities. For instance, Eduardo’s mother spoke of the importance of her son’s school in coordinating support needs, “There is special education in school, and a therapist, psychologist; he has various things like speech help. And all of that is within the school.” Carlos’ mother also expressed her preference for highly integrated service provision. She tried to find health service providers who have offices in the same public hospital in the city center. This way, she could take Carlos to multiple appointments on the same day, limiting her missed work time.

Cultural Relativity of Services Results suggest that immigrants and refugees with IDD and their families value the health care services they receive. Often, the researcher heard that health services that did not meet expectations were preferable to nothing at all. Amina’s mother summarizes the sentiment as, “People with autism

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can get help here in this country. In Africa people with disabilities may not receive adequate services. It’s possible they don’t get any services.” Comparison with one’s home country was quite common among members of this sample. For the Mexican families, all of whom lacked official documentation, comparison with Mexican medical services for people with IDD was particularly poignant. For instance, breaking into tears, Maria’s mother told of her fear of deportation, not for herself, but for Maria, whose multiple severe disabilities would almost certainly go unaddressed in the family’s home village.

DISCUSSION Taken together, the findings suggest complex considerations for the provision of medical care for immigrants and refugees with disabilities. First, health system administrators and practitioners may wish to consider revision of systems that will enable care coordination to be more integrated, particularly for this population. As this population relies heavily on specialist services, and because of communication challenges facing immigrants with disabilities, practitioners should be aware of the extra attention that must be paid to care coordination. Models such as medical home34,35 may be of particular benefit for this population, as it enables person-centered care in conjunction with thorough coordination among service providers, who often feel overwhelmed or dissatisfied when faced with care provision and coordination for people with IDD36 and immigrants.37 In cases where it is possible to coordinate specialist services in the same physical location and the same system coordination structure, this would be beneficial, as has been previously indicated for both immigrants38 and people with IDD.39 Outreach targeted at community centers, advocacy organizations, schools, and faith communities may also assist at bringing immigrants and refugees with disabilities into such coordinated systems of practice, as they often struggle to navigate into the complex service system independently. Communication challenges were common among members of this sample, both because of their disabilities and because of their limited English proficiency. Use of interpreters assists the exchange of information between health care provider and patient, but is not sufficiently a solution, largely due to the relational and role issues inherent in the interpreter-practitioner relationship.40 Barriers in access may be addressed when appropriate communication accommodations are furnished throughout the contact between a health care provider and a patient, beginning with scheduling and extending to appointment check-out. It is also imperative to afford additional time during the provision of health care services, as both immigrants and people with IDD41 will need additional communication time, although this time is often not furnished.42 Although the managed care environment constrains the time of health care providers, equitable access and outcomes may only be expected when patients fully understand their conditions and recommended interventions. This study’s results suggest that this type of system-level cultural competence, which is adaptable to both culture and disability, is elemental in establishing a health system that is culturally responsive. r

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Finally, the results of this study underscore the multifaceted identities that immigrants and refugees with disabilities negotiate to access the supports they need. Although disability may often be important in driving decisions on accessing health services, it seems that members of this sample rely heavily on their ethnic background in making health care– related choices. Providers, however, should remain aware that individuals will call upon all of the complex interrelations of their identity when interfacing with the health care system and providers. Providers who acknowledge the complexities of health belief systems from multiple perspectives may best be able to negotiate positive treatment options, balancing medical best practices, with a patient’s worldview. As this study is qualitative, it is important to remember that results are not meant to be generalizable, but to illuminate the experience of informants. Although the methods used were rigorous and grounded in qualitative theory and ethics, this method does not enable weighting importance of key findings. These findings should be considered interpretivist and descriptive. Many of the respondents were proxies for individuals with disabilities. Although proxy report is common in disabilityrelated research, there are drawbacks. As the family members who served as respondents have never lived with a disability, their perspectives may not capture the nuance inherent in living as a person with a disability.27,28 Finally, this study was informed strictly by the perspectives of immigrants with IDD and their families. The perspectives of service providers and other stakeholder groups may reflect very different experiences which may be interesting grounds for future inquiry. For immigrants with IDD, accessing vital services in the American health care system can be a multifaceted challenge. Finding reliable information, communicating across disability and language challenges, and finding uncoordinated systems of care are common challenges which may be facilitated by a number of factors. Health service providers may wish to give immigrants with IDD special consideration, as their complex health care needs cannot be understood without the context of personal identity encompassing disability and ethnic background. ACKNOWLEDGMENT The author thanks Vangyee Yang, Ryan Anderson Pascual, Zahra Omar, Charlie Lakin, and Matt Ziegler for their contributions to this work. REFERENCES 1. Huang Z, Yu S, Ledsky R. Health status and health service access and use among children in US immigrant families. Am J Public Health. 2006;96:634–640. 2. Lucas J, Barr-Anderson D, Kington R. Health status, health insurance and health care utilization patterns of immigrant black men. Am J Public Health. 2003;93:1740–1747. 3. Marshall K, Urrutia-Rojas X, Mas F, et al. Health status and access to health care of documented and undocumented immigrant Latino women. Health Care Women Int. 2005;26:916–936. 4. Weathers A, Novak S, Sastry N, et al. Parental nativity is an important factor in where children usually go for health care. Matern Child Health J. 2008;12:499–508. 5. Yu S, Huang Z, Schwalberg R, et al. Parental awareness of health and community resources among immigrant families. Matern Child Health J. 2005;9:27–34.


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32. Lincoln YS, Guba EG. Naturalistic Inquiry. Newbury Park: Sage Publications; 1985. 33. Elo S, Kaariainen M, Outi K, et al. Qualitative content analysis: a focus on trustworthiness. Sage Open. 2014;4:1–10. 34. Nutting PA, Miller WL, Crabtree BF, et al. Initial lessons from the first national demonstration project on practice transformation to a patientcentered medical home. Ann Fam Med. 2009;7:254–260. 35. Rosenthal TC. The medical home: growing evidence to support a new approach to primary care. J Am Board Fam Med. 2008;21:427–440. 36. Wilkinson J, Dreyfus D, Cerreto M, et al. “Sometimes I feel overwhelmed”: education needs of family physicians caring for people with intellectual disability. Intellect Dev Disabil. 2012;50:243–250. 37. Kamath C, O’Fallon WM, Offord KP, et al. Provider satisfaction in clinical encounters with ethnic immigrant patients. Mayo Clin Proc. 2003;78:1353–1360.

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38. BeLue R, Degboe AN, Miranda PY, et al. Do medical homes reduce disparities in receipt of preventive services between children living in immigrant and non-immigrant families? J Immigr Minor Health. 2012;14:617–625. 39. Lin SC, Yu SM, Harwood RL. Autism spectrum disorders and developmental disabilities in children from immigrant families in the United States. Pediatrics. 2012;130:S191–S197. 40. Brisset C, Leanza Y, Laforest K. Working with interpreters in health care: a systematic review and meta-ethnography of qualitative studies. Patient Educ Couns. 2013;91:131–140. 41. Antonelli RC, Stille CJ, Antonelli DM. Care coordination for children and youth with special health care needs: a descriptive, multisite study of activities, personnel costs, and outcomes. Pediatrics. 2008;122:209–216. 42. Tocher TM, Larson EB. Do physicians spend more time with nonEnglish-speaking patients? J Gen Intern Med. 1999;14:303–309.


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"We find a way": challenges and facilitators for health care access among immigrants and refugees with intellectual and developmental disabilities.

Immigrant and refugee populations and people with disabilities are known to have inequitable access to a range of health services. Very little study h...
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