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BARRIERS TO NEUROLOGY CARE FOR IMMIGRANTS
LANGUAGE IS ONLY ONE OF MANY OBSTACLES

In mid-August, embroiled in a contentious debate over immigration reform, the US Congress held a hearing that placed the blame for the strain on America's health care system on illegal immigrants. “Fewer poor Americans get Medicaid because illegal aliens get Medicaid,” said Representative Charlie Norwood (D-GA), a member of the House Committee on Energy and Commerce, at a Congressional field hearing organized by House Republicans. “It's that simple.”

Meanwhile, a new Medicaid rule, implemented in July, requires more than 50 million poor Americans to prove their citizenship or lose their medical benefits or long-term care.

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Dr. Olajide Williams: “There is a lot of discomfort and fear of the health care system. Some of it has to do with language and language barriers. Once you can reach out to people in their own language, misperceptions that lead to fear and discomfort may start to wither away.”

But while policymakers focus on the health care that immigrants who are here illegally are getting at taxpayer expense, little attention is paid to the barriers facing the hundreds of thousands of immigrants – both legal and illegal – when they seek medical attention in the United States. It's a growing problem, according to a June 2005 report from the Urban Institute, A Profile of Low-Income Working Immigrant Families.

“Despite significant benefit restorations in 1997 and 2002, most legal immigrants with less than five years of residency in the United States are ineligible for cash welfare, food assistance, public health insurance, housing assistance, and other major federal benefits,” write authors Randy Capps, Michael Fix, Everett Henderson, and Jane Reardon-Anderson.

“Although over three-quarters of children in immigrant families are US citizens and therefore not subject to these eligibility bars, their access to benefits may be affected by their parents' lack of citizenship, as well as other factors including language barriers, cultural misunderstandings, and fear of interaction with government agencies.”

IN THE HOTBED OF MIAMI

Neurologists practicing in urban areas with large immigrant populations know these barriers all too well. In Miami, about 500,000 of the 2.3 million residents have no health insurance, said Walter Bradley, MD, Professor and Chairman of the Department of Neurology at the University of Miami School of Medicine.

“Many of those are recent immigrants, both legal and illegal. In many ways, we are rather fortunate, because we do have the University of Miami and Jackson Memorial Hospital, which are supported by the county and provide care for medically indigent individuals,” he said. “There are primary clinics operated by the Jackson Health System, but there really aren't the resources necessary to provide care throughout the community. In some areas, there is good primary care, and in some, there is not.”

Like others who lack health insurance, many immigrants get their primary health care through the emergency room. Jackson Memorial's, in some years, has been the busiest emergency room in the nation. The result, said Dr. Bradley, is that by far his largest inpatient neurology service is for stroke care.

“People have hypertension and diabetes, and they have virtually no primary medical care structure, so they don't get treated until after they have a stroke and come into the emergency room. Of course, their care then is much more expensive than if their diabetes and blood pressure had been kept under control.”

NEW YORK CITY

Some 1,300 miles north, in the East Harlem neighborhood of New York City, Olajide Williams, MD, Director of Harlem Hospital's Stroke Initiative, faces a similar situation. At Harlem Hospital, which serves a large French-speaking West African and Spanish-speaking immigrant population, about half of the neurology service's cases are stroke patients. For Dr. Williams, whose Stroke Initiative is an innovative outreach program to close gaps in stroke care in the area, reaching these particular patients means understanding the barriers they face.

“There is a lot of discomfort and fear of the health care system,” he said. Some of it has to do with language and language barriers. Once you can reach out to people in their own language, misperceptions that lead to fear and discomfort may start to wither away.”

The Stroke Initiative, which takes a health care team (including managed care and pharmacy representatives, as well as doctors and nurses) into Harlem community settings to provide stroke risk appraisals and individual counseling, includes permanent Spanish-speaking staff members and regular French-speaking volunteers.

Outreach to immigrant communities, said Dr. Williams, is more than just providing brochures in different languages. “People can go to events and pick up printed materials and never read them, or read them but it doesn't hit home. Individualized counseling and interventions in the primary language, especially in a community where literacy might play a role, is much more powerful.”

In Miami, about half of Dr. Bradley's residents are of Hispanic origin and can get Spanish-speaking patients' history in their native language – offering a much richer understanding than when a non-native Spanish speaker tries to get the story from the patient. “The specifics of neurocognitive problems, memory, speech, and language demand that you understand the language at a much deeper level,” he said.

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Dr. Elise Caccappolo: “The tools we have are culturally biased and fail to evaluate people properly. Even when we could give tests to Spanish-speaking patients, they hadnt been properly translated and normed.”

But language is only one of the barriers. Many immigrants don't understand the health care system and don't know what to ask for. They are not aware about available services and programs, Dr. Williams said.

“When we go out into these communities, people are very surprised that these services are available through Harlem Hospital,” Dr. Williams said. “We can't bring our stroke awareness campaign into the community without addressing these fundamental needs, such as access issues. That's one of the reasons why we've integrated managed care teams and pharmacy teams into community outreach. These people are often the busiest people in the field, enrolling people in plans and referring people to charitable assistance programs.”

FINANCIAL BARRIERS

And, of course, there is always the financial barrier. In 2001, according to the Urban Institute report, 42 percent of immigrant families were low-income, compared with 21 percent of native families; and 12 percent of immigrant families were poor, compared with 5 percent of native families. Not surprisingly, many of these low-income families lack insurance, the report adds: In 2002, more than half of foreign-born adults in low-income working families were uninsured (56 percent), almost twice the level for comparable native-born adults (29 percent).

Although many institutions, like Harlem Hospital, provide uncompensated care to the uninsured, including both legal and illegal immigrants, there are often gaps in care.

The Memory Disorders Clinic at Columbia University in the Washington Heights neighborhood of Manhattan – an area with a substantial Spanish-speaking Dominican population, as well as other immigrant groups – sees only private-pay patients and those with Medicare and Medicaid.

If you're under 65 and don't qualify for Medicaid, “There's nowhere for you to go unless someone is working hard for you and can find a research study,” said Elise Caccappolo, PhD, Assistant Professor of Neuropsychology at the Clinic, which is located within Columbia's Neurological Institute. “Here at Columbia, we do have a couple of research studies but not nearly enough to capture everyone who needs it. We have to turn people away – we're already in a deficit.”

Even when a patient has the financial resources to access the Memory Disorders Clinic, said Dr. Caccappolo, those other barriers often reassert themselves. A state law (New York is the only state with such a law) requires that only licensed neuropsychologists or graduate students in psychology can conduct neuropsychological testing.

“Until we found out about this law, we used a tester who spoke Spanish and 30 percent of our tests were done in Spanish, but she isn't a neuropsychologist and now we can't use her. If there are any neuropsychologists or externs around who speak Spanish, they've already been scooped up by other programs, so we're turning people away for that reason, as well,” said Dr. Caccappolo.

And speaking Spanish isn't necessarily enough in evaluating complex neurological disorders, such as dementia, in immigrant patients. “The tools we have are culturally biased and fail to evaluate people properly. Even when we could give tests to Spanish-speaking patients, they hadn't been properly translated and normed,” she explained. [When tests are normed, a person's results are compared to those of others from the same background.] “For instance, if I have a 65-year-old Dominican woman with 10 years of education, I cannot compare her to other women with that level of education. All I can compare her to is a 65-year-old white woman with higher education.”

CULTURAL BARRIERS

Indeed, said Dr. Caccappolo, the concept of neurological conditions such as memory disorders can be quite different in some immigrant communities, erecting yet another barrier to appropriate diagnosis and care. “Elderly Spanish speakers, particularly Dominicans, don't view their symptoms the same way we do. For example, if they have a visual hallucination, which can be part of a certain diagnosis, they may just say, ‘Oh, someone came to talk to me in my bedroom.’ They don't make as big a deal about it as we do, and if you're not aware of these cultural issues, you're going to misdiagnose more easily,” she said. Anxiety about failing memory is often dismissed as “nerves,” and men, defensive about such things, must be asked more specific questions like, “Have you been losing your glasses more often lately?”

Immigrants come to the health care system with low expectations already, said Dr. Bradley. “Many of the countries in Latin America, for example, don't have a health insurance system. The poor can't get health care until they get very sick, and they almost expect that as what they should have here in the United States. We believe and hope that we can provide a better level of care for them, but sadly, it is not true.”

ARTICLE IN BRIEF

  • ✓ Neurologists discuss the language, cultural, and financial barriers that affect care for immigrants, legal and illegal.