Issues and Challenges in Facilitating Health Communication with Immigrant, Refugee, and Migrant Populations1
The workshop opened with a moderated panel discussion on issues and challenges to facilitating health communication with immigrant, refugee, and migrant populations. Moderator Alicia Fernandez, professor of clinical medicine at the University of California, San Francisco, began the discussion by asking each of the three panelists—Paul Geltman, medical director for ambulatory care services at Franciscan Children’s Hospital; Jeffrey B. Caballero, executive director of the Association of Asian Pacific Community Health Organizations (AAPCHO); and Henry R. Perea, former member of the County of Fresno Board of Supervisors—to describe the work they do with these populations and identify some of the biggest challenges and opportunities.
Geltman explained that he has worked with refugee and immigrant communities for his entire career, including in his current position as medical director of the Massachusetts statewide health screening program for all refugees entering the country from overseas and in his prior position with the Cambridge (Massachusetts) Health Alliance, where his patients included individuals from some 50 countries and a variety of socioeconomic and ethnic backgrounds. In response to a prompt from Fernandez to define a refugee, Geltman said that refugee is a defined visa category that includes
1 This chapter is based on a panel discussion involving Paul Geltman, medical director of ambulatory care services at the University of California, San Francisco; Jeffrey B. Caballero, executive director of the Association of Asian Pacific Community Health Organizations; Henry R. Perea, former member of the County of Fresno Board of Supervisors; and moderator Alicia Fernandez, professor of clinical medicine at the University of California, San Francisco.
similar individuals such as those seeking political asylum and temporary protected status, victims of trafficking, and Amerasians from Southeast Asia, among others. Before reaching U.S. shores, he noted, most refugees go through a health screening program that is overseen by the Centers for Disease Control and Prevention (CDC) and implemented by the International Organization for Migration.
Most states now have a defined public health system for conducting additional health screens once refugees enter the United States, and they offer, via a network of community organizations, housing services, English language instruction, and job placement services, he said. While health screening is a public health function, it can serve as what Geltman called “an excellent bridge for primary care.” Financial supports for health care through automatic Medicaid enrollment of refugees typically end after 8 months, added Geltman, though coverage now lasts for 1 year in states that accepted Medicaid expansion under the Patient Protection and Affordable Care Act (ACA). Refugees are also exempt from the 1998 welfare restrictions that apply to other documented immigrant groups. These restrictions, Geltman explained, require a 10-year work history to receive public benefits.
As a final note to his introductory comments, Geltman said that depending on the state, “the vagaries of health insurance come into play for those who do not meet the typical categorical eligibility requirements for Medicaid.” As an example, when the Lost Boys of Sudan came to the United States in 2001, many of them lost their health care benefits after their immediate eligibility period ended. “They lost their health insurance and that effectively shut them out from care even though they were refugees here in the country with proper documentation,” said Geltman.
Next, Caballero explained that AAPCHO is a national association representing 35 community-based organizations in 12 states serving more than 750,000 patients annually who are predominantly Asian Americans, Native Hawaiians, and Pacific Islanders. Of the 35 AAPCHO organizations, 30 are federally qualified health centers, and they serve as the safety net provider, particularly for Asian American and Pacific Islander populations in the communities they serve. Caballero noted that 77 percent of the patients served by AAPCHO organizations are within 100 percent of the federal poverty level and 92 percent are within 200 percent of the poverty level. At some AAPCHO health centers, the percentage of patients who have limited English proficiency can reach 98 percent. Chinese is the predominant primary language at many of the centers, but language diversity can be large. Oakland Asian Health Services, for example, provides services in 14 languages, while the AAPCHO health center in Seattle and King County (Washington) provides services in 42 languages.
Caballero noted that his primary function is to advocate on behalf
of these community health centers as part of an overall effort to raise awareness about health disparities in these communities and to promote cultural competency and language access resources. Over the past 4 years, AAPCHO has partnered with the Asian American Health Forum and Action for Health Justice, a network of national and 70 community-based organizations in 22 states, to help in the health insurance enrollment process. This effort, he said, touched some 1 million lives and enrolled individuals who speak more than a dozen different languages. More recently, however, he and his colleagues have been responding to the anti-immigrant fears in their communities. “We have spent significant resources nationally and with many other organizations responding to these fears,” said Caballero.
AAPCHO has been collaborating with a number of national partners, including the Oregon Primary Care Association and the National Association of Community Centers, on a tool—the Protocol for Responding to and Assessing Patient Assets, Risks, and Experiences (PRAPARE)—to assess social determinants of health in these communities. The partners have piloted PRAPARE over the past 3 years. The goal is to be able to integrate this needs assessment into electronic health records (EHRs) so that organizations across cities, states, and even at the national level can begin aggregating data to better understand the needs of immigrant, refugee, and migrant populations in their communities.
As an introduction to his comments, Perea noted that he has taught at a university, been a police officer, a school board member, a medical center human resources director for 30 years, a member of the Fresno city council, and for the past 12 years a member of the County of Fresno Board of Supervisors. Those experiences, he explained, prepared him for the political activism he was now going to embark on in the next phase of his life. He then recounted how an issue arose in Fresno County when the ACA came into being. Prior to that time, Perea said, Fresno County paid approximately $20 million annually to the local privatized health system to provide health care for everyone in the county, including undocumented individuals. However, the ACA created a gap in specialty care, particularly for undocumented individuals.
At the time, said Perea, the county received a $5 million grant from the state of California that it needed to use or return to the state. Each of five county supervisors had a different idea on how to spend the money, and his idea was to use it to address that coverage gap. “You can imagine the debate we had for over a year in trying to move that money,” said Perea. In the end, Perea’s son, who represented Fresno County in the California legislature, proposed legislation requiring counties and cities to spend the money on health care for undocumented individuals. The bill passed, and after another six months of arguing and an election that changed the Board of Supervisors’ composition, the county board decided to spend that money
to address this coverage gap. He acknowledged that this is a short-term solution, since the money will run out eventually, but it points to the progress that communities can make when they engage in political advocacy.
After noting that immigrant, refugee, and migrant populations have different legal status that affects their access to health care, Fernandez asked the panelists to speak about the common challenges the health care system faces in providing care for these populations. Geltman replied that language proficiency and limited health literacy are major challenges for providing appropriate care. Even those individuals who come from countries where English is a second language, such as Nigeria or Sierra Leone, have limited English proficiency, he explained. Community supports and social networks play a critical role in providing health care and other needed services to these individuals, he said. In fact, he added, using friends and families as interpreters, something that is normally discouraged, can be a critical factor in overcoming limited English proficiency and delivering appropriate care to individuals in these populations.
Caballero explained that many of the health care centers his organization represents do not ask individuals if they were born outside of the country or about their country of origin. “Based on the best legal counsel that we have received thus far, there are some protections for the health records, but if ICE [Immigration and Customs Enforcement] agents come with a subpoena you have no choice but to provide the health records.” One effect has been that many health care organizations are considering mechanisms to systematically disenroll people to make sure that the names of potential enforcement targets are no longer in their systems. This activity, in turn, creates the challenge of how to reach out to these communities to deliver health care without creating more panic, he said. One approach the health centers are taking, and with which their clinicians feel comfortable, is to collect preferred language, race, and ethnicity information, which can serve as a proxy for the “foreign-born question.”
For the past 12 years, Caballero said, AAPCHO has been trying to standardize the delivery of what it calls care-enabling services and to categorize these services and their relevance to patient outcomes in immigrant, refugee, and migrant communities. These non-clinical services include eligibility counseling, enrollment support, case management, transportation, and language services. This work has played an important role in creating the PRAPARE needs assessment tool, Caballero said. In the past, these enabling services functioned as a proxy for social determinants of health. Going forward, this new tool will serve as a more direct measure of those social determinants and help the health centers determine which of its
enabling services are having the biggest impact on these social determinants and on the effectiveness of the clinical services they deliver to these populations. “We are also trying to demonstrate that with the combination of monitoring and quality improvement we can help reduce the total overall cost of care,” said Caballero.
A major difference between the refugee and undocumented populations, said Perea, is that the former can legally receive services, while the latter cannot. What he has seen, though, is that there are many people who begrudge spending tax dollars on providing members of either group with health care. One change he has noticed is how the increase in diversity in the immigrant population in Fresno County has affected care delivery. “In the last few years, we have had discussions about cultural competency and how to deal with the differences in the Hmong community versus the Hispanic community versus the growing Ukrainian community,” said Perea. Fresno County’s health system is trying to deal with this diversity by hiring people with different religious and cultural perspectives to be part of health teams and by employing some unusual strategies, such as establishing community gardens.
Community engagement, he said, plays a critical role in helping the health system—and the political bodies that provide funds to the health system—better understand the care needs of these different populations. He noted the importance of setting aside the emotions of the immigration issue and looking at the need to care for these populations in terms of basic economics. In Fresno County, for example, agriculture is a $7 billion industry, and the local agriculture industry now admits officially that 90 percent of its workforce is undocumented. Without a healthy workforce, that industry would suffer, as would the American hospitality and construction industries, said Perea.
Returning to the subject Caballero raised regarding increased immigration enforcement, Fernandez noted that Zuckerberg San Francisco General and the San Francisco Department of Public Health, in response to changes in immigration policy, have started a “You are safe here” campaign featuring prominent posters placed throughout the hospital and its affiliated clinics. In addition, the parent of every child in the San Francisco Unified School District received a postcard promoting this idea. Also, all 300 community-based organizations with a city services contract received “You are safe here” materials to distribute to their clients. She also said that a huge issue for clinicians, and particularly pediatricians, is that social history matters when it comes to delivering care, and the issue of whether to document immigration status and social history in patient charts has become a concern. “The advice that we are giving people is to ask only when you have a need-to-know, meaning when it completely affects the medical care,
not as part of the general background and not to chart that,” Fernandez explained.
However, she added, “in this climate of fear, we have found that hospital and health care systems that receive federal funding are required now to ask questions about race, ethnicity, and preferred language in order to get prime dollars.” In many places, she said, staff is pushing back against this requirement. Geltman noted that he believes that an immigrant’s legal status is very important to know about because it is tied to the social supports, services, and other benefits for which that individual is eligible. While asking about legal status is important, he agreed that writing it down in the patient’s chart should no longer be done. He added that the only time to ask about a person’s immigration status is when there is an existing trusted relationship between the clinician and the community. In his case, he had become the go-to pediatrician for a large evangelical Brazilian church in one of the communities he served. “They all knew me and were reassured to come to me and I could ask them these questions in a way that was not threatening,” said Geltman.
In today’s climate, he added, even those who have legal immigration status are living with a sense of uncertainty about their future in the country, a situation that reminds him of the days after the September 11, 2001, attacks. He also pointed out that refugees in particular go through extreme vetting that is far more rigorous than the screening other immigrants have to go through to legally come to the United States. In addition, many of these refugees now belong to smaller groups and so are not coming into large preexisting communities that can help them get settled and secure needed services, he said.
Federal funding is available to establish what are called mutual assistance associations, which Geltman explained are small community agencies designed to support local refugee populations. It is important, he said, for clinicians and public health practitioners to establish relationships with those associations as one means for creating a trusted bond with the communities they serve. Another way to build such a bond, said Caballero, is to include community advocates on health centers’ patient-majority boards and to create patient leadership councils that include representatives of all ages from the local community. The AAPCHO health centers, he said, have been engaging these leadership councils for more than a decade, and in today’s political climate these councils have become increasingly important players in helping the health centers remain connected with and trusted by the communities they serve. The key point here, said Caballero, is that these trusted relationships were cultivated before they were needed.
Another important role for these councils, he added, is in designing culturally competent programs.
Perea touched on this issue by recounting a recent dinner he was invited to over the holidays by a group of influential and well-respected Muslim doctors. At this dinner, which was served by a Syrian refugee family that had completed the 18-month extreme vetting process, the doctors noted that when it came to clinicians, nobody in the community had qualms about being seen by a Muslim doctor. Yet in the community, their children were being picked on at school and their wives were being criticized at the grocery store. Perea’s response was to recommend that these experienced clinicians need to “hold hands” with community organizations representing the other ethnic and cultural groups and create a political power to counter those kinds of behaviors. “We have to push back,” said Perea. He also noted that immigrant, refugee, and migrant populations, whether they are documented or not, have a tremendous economic power that they need to harness. As a final thought, he said that health care providers and community organizations need to get out of their silos and work together to counter current anti-immigrant sentiment and actions. “If we stay in our silos, they pick us off. If we come together, we have strength,” he said.
Caballero agreed with Perea and noted that AAPCHO’s member organizations have been conducting active civic engagement campaigns that include voter turnout efforts. Early evaluations of these efforts show that voter turnout has increased 20 to 40 percent in some of the areas served by these health centers. He added that while there are undocumented immigrants in the Asia and Pacific Islander community, this same community largely comprises citizens who are eligible to vote, though one not engaged by any particular political party.
From his work with the Somali community in Massachusetts, Geltman learned that the relationships among culture, English proficiency, and health literacy are complex. For example, in a study he conducted on oral health, there were some aspects in which health literacy played some role and others for which health literacy had no bearing on outcomes. The extent to which health literacy matters, he said, has much to do with social capital and community supports. “There are ways to get around low health literacy when working with communities or individual patients,” he said. Somalis, for example, generally have good oral health status that derives in part from their Islamic faith and the cleansing rituals they engage in before praying. “Understanding these undercurrents and that the community can support people without having literacy skills becomes an important factor in effectively engaging and providing care to those communities,” said Geltman.
This last comment prompted Caballero to note how literacy and English proficiency has played a role in enrollment efforts conducted by AAPCHO’s health centers. While Massachusetts’s health exchange offers multilingual computer enrollment forms, an AAPCHO member health center has to hire staff every year to help the 35,000 clients who do not speak English or Spanish, particularly for patients who feel more comfortable speaking Chinese or Vietnamese. AAPCHO health centers have also found much of enrollment materials’ language too complex. As a community network, the AAPCHO health centers worked among community partners and their community panels to develop a glossary of the 100 most frequently used enrollment terms and concepts in an additional 10 languages. These are now posted online, though he noted that the federal government would not endorse these glossaries because they did not use the federally approved—and too complex—terms.
Bernard Rosof began the discussion period by noting that the comments from the panelists reminded him of something Martin Luther King, Jr., said, which was “If I cannot do great things, I can do small things in a great way.” That prompted Ruth Parker, professor of medicine, pediatrics, and public health at Emory University School of Medicine, to ask the panelists for examples of the strategies, practices, and approaches that can work and that can get lost in the overwhelming burden of the issues confronting these populations.
Geltman responded that he had hoped to apply something he learned from a health literacy conference presentation by a pediatrician from a Kaiser Permanente facility in North Carolina that served a predominantly low-literacy and low-income African-American and Latino population. This pediatrician, Geltman recounted, had concluded that she needed to provide written materials with basic, bulleted take-home messages with no more than three to five key points. After hearing this presentation, Geltman returned to Massachusetts and broke down the standard information contained in dense American Academy of Pediatric information sheets into simple bulleted lists for his patients, who came from 50-some countries and a variety of ethnic and religious backgrounds. However, when he gave these new information sheets to families whose first language was not English, they did not like them. “They actually loved the American Academy of Pediatrics forms because of the density of information,” Geltman explained. Even though the language was too complicated for them, these families wanted the information and they wanted it in writing.
The solution, he said, was too add back more information from the American Academy of Pediatrics forms while retaining the easy-to-read for-
mat, with big fonts and bulleted lists. “It worked and we got great feedback on them,” said Geltman. “Even if people could not read them themselves, they had friends and families who could read them for them.” He noted that he had 15 5- to 7-page bulleted documents translated into Brazilian Portuguese, Spanish, and Haitian Creole, the most common languages in his clinic, thanks to a $20,000 grant from the Cambridge Health Alliance. His clinic, however, could not afford to translate them into other languages. “The desire for information is universal regardless of people’s literacy levels and you have to find a way to provide it to people,” he said, adding that “this was a local solution for us in Massachusetts, and it may not work in other communities. You have to figure out what your needs are in your community and a way to deliver it to them effectively.”
Catina O’Leary, president and chief executive officer of Health Literacy Media, asked Caballero to comment on the proxies that his organization and its health centers have developed to replace asking a patient if they are foreign born. He replied that preferred language, race, and ethnicity combined is a more accepted or appropriate proxy than collecting undocumented status, which is what the health centers used to ask about in the 1990s.
Earnestine Willis, the Kellner Professor in Pediatrics at the Medical College of Wisconsin, asked Geltman if he has found anything that works with regard to overcoming the fear and mistrust common among marginalized populations. Geltman replied that he has been fortunate to work for the past 11 years in Cambridge, Massachusetts, where the community is sensitive to these issues and tries to go out of its way to include groups that are marginalized elsewhere. He also noted Massachusetts, like the rest of New England, has centralized its public health services at the state level and contracts with nonprofit community health centers to provide many of these services. These nonprofit community health centers, such as the Cambridge City Hospital where he worked, have developed good relationships with their communities through their clinic-level patient advisory boards and other outreach efforts that come down from their boards of directors and permeate institutional structures. In addition, he said, the people who work at these health centers are committed to having these kinds of relationships. “They attract the type of person to work there who wants to be engaged in the community and get involved,” said Geltman. In Boston, he noted, there are not many private medical practitioners, in part because of the trusted role of the community health centers that formed in the late 1960s and early 1970s. The result is that in the Greater Boston and eastern Massachusetts region, people know that these institutions support them. “We get to that level of trust,” he said.
Perea remarked that he believes that the majority of people in the United States “think the way we do.” In his opinion, a small number of
people are dominating the discussion today and creating the fear that these communities are experiencing. If the majority does not remain silent, good things can happen. One lesson he learned in his time as an elected official was that he and his colleagues operate on a three-legged stool model. One leg is a thorough understanding of an issue gained from talking to the experts. The second leg is community input, with the media serving as the third leg. Understanding this concept and getting all three legs of the stool working together will, he said, lead to more successes than failures and provide cover when taking necessary steps that do not please the small but vocal minority.
Robert Logan, communications research scientist at the National Library of Medicine, pointed out that while immigration enforcement is not unique to the current federal administration, the tone of the conversation has changed. Moving on, he said a previous roundtable workshop featured several speakers who made a compelling argument that the most effective way to deliver indigent care in the United States and to help marginalized populations is to have a health care system that combines medical care and social welfare care. Caballero responded that one of the biggest strengths of the PRAPARE2 social determinants tool is that it will provide health systems with a systematic way of identifying the social needs prevalent in their patient populations. This, in turn, will enable them to prioritize which social factors are more common among their most expensive or complex patients and either develop the services to address those factors themselves, or build community partnerships to provide those services, in combination with the health services they already provide for those patients.
Jennifer Dillaha, medical director for immunizations and medical advisor for health literacy and communication at the Arkansas Department of Health, noted that Arkansas has a large population of migrant Pacific Islanders who are in the country legally but not eligible for Medicaid and are having difficulty navigating health care and obtaining needed care. Her observation is that the faith-based community of these Pacific Islanders could be important partners for bridging the health literacy and access to care gaps, but that her state has found it difficult to connect to that faith-based community. She asked Caballero if he had any ideas on how to make that connection. He replied that his recommendation was to develop relationships with the community groups that serve the communities of interest and through those relationships learn which strategies and approaches would be most effective.
Geltman then recounted how he and his colleagues spoke to the imam of a local mosque serving the Somali community to have him encourage his congregation to include toothbrushing as part of the pre-prayer ablu-
tions, an approach he called social marketing using a faith-based approach. In terms of being a best practice, he said his research has shown there is a great role for faith-based organizations. However, he added that he is “not a big fan of just saying this community goes to church or temple or the mosque and therefore we should use that for a public health agenda. There is no evidence to suggest that that is going to be better than any other approach unless you have a specific targeted practice that you are trying to promote and have access to that community in a very culturally appropriate manner.”
Laurie Francis, senior director of clinical operations and quality at the Oregon Primary Care Association, first reminded the workshop that the federally qualified health centers started as centers of community health focused on social and economic issues. She then asked the panelists for their ideas on how an increased understanding of social and economic drivers of health and well-being, obtained using tools such as PRAPARE, can help communities align their voices and increase their power to produce change. Geltman recommended an approach developed by a group now called the Right Question Institute3 that helps people become empowered to advocate for themselves. He first encountered this group when it was working to empower parents to advocate for their children with regard to improving Boston’s schools. He has since worked with this group to apply their strategy around parent activism and advocacy in a health care setting in a similar manner to the way the health literacy community has developed the Ask Me 3 approach. That approach encourages patients and families to ask three specific questions of their providers to better understand their health conditions and what they need to do to stay healthy. What these approaches come down to, said Geltman, is that they teach people how to advocate for themselves even if they lack literacy skills.
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