Another barrier: The language challenges for disabled Latinos
Cris Villalonga-Vivoni
Report for America corps member
The Record-Journal
November 1, 2023
Cris Villalonga-Vivoni
Report for America corps member
The Record-Journal
November 1, 2023
Maria Canales became the official family translator when her family moved from Puerto Rico to Connecticut. By the time she was nine years old, Canales was reading the instructions on prescription medications, making agreements with the landlord and filling out Social Security paperwork.
Simple things like acronyms were a challenge for her parents, Canales recalls. At medical appointments, doctors would provide almost no health education and used the language barrier as an excuse.
She remembered how when her mother learned enough English to hold her own in medical appointments, the medical care worsened. She felt that the doctors wouldn’t listen to her mother as much due to the language barrier.
“[My mother] went in for an appointment and had a massive stroke two days later,” Canales said. “ Explain that to me. You go in two days earlier, obviously, you must have had symptoms that were never discussed, that were never reviewed. You can’t tell me that the language barrier did not have something to do with.”
Even though the United States does not have an official language, it offers limited services for people that don’t speak English. In the absence of formal interpreting services, Canales’ memory mirrors the experience of many other bilingual children who are often asked to help their loved ones navigate.
In 2021, the U.S. Census Bureau estimated that 46 million people in the United States from over 50 languages spoke English less than “very well.” Among these, the largest group is Spanish speakers as about 16 million Spanish speakers spoke English less than “very well.” For them, the language barrier is present in every aspect of their lives, preventing them from such essential activities as accessing healthcare, participating in local government, filing taxes or participating in their children’s education.
Language, like national origin, is a protected category under title VI of the landmark Civil Rights Act of 1964. Even though every agency that receives federal funding is required to offer access in multiple languages by a 2002 executive order, its implementation varies across the country and depends on funding and the availability of trained interpreters.
In response, nonprofits, health organizations, school districts, local governments and family members all over the country are stepping up to fill the gap left by the language barrier. The response is as varied and unique as each community. Some provide live interpretation at safety meetings, others advocate at their state legislature or file complaints with the Department of Justice.
Beyond the daily frustrations of the language barrier, the ability to speak English is also a factor in determining a resident’s education, health, wealth and even safety.
In 2021, the Census estimated that 12% of the people who spoke English at home lived at or above the Federal Poverty Level. This number rose to 16% for those who spoke a language other than English and home and to 17% for those who spoke Spanish at home.
The Census also reported that 7% of the people above 25 who spoke English at home earned less than a High School degree. This rose to 24% for those who spoke
a language other than English at home and to 31% for those who spoke Spanish at home.
For Canales, she felt that English-speaking adults were more likely to listen to her as a nine year old because she spoke clearly. Meanwhile, her parents with limited English would be dismissed or ignored although they had college educations.
“Language is important because it defines us and when people sometimes dismiss language, you’re dismissing the whole culture,” Canales said.
When the language barrier becomes a security matter
Beyond quality of life, the absence of language services often has more immediate and dangerous consequences. Sometimes, it impacts access to domestic violence services since access to services in a survivor’s language is often required for a survivor to find help.
In other cases, the lack of language services is a matter of public safety. In Stockton, CA, officials called for a public meeting in October of 2022 to discuss the threat of serial killings that had been taking place in the city since April 2021. At the time, seven people had been killed or shot. Five of them were Hispanic men.
However, there wasn’t a translator on site to help the attendants that didn’t speak English, even though Spanish speakers were at the highest risk because they went out in the early morning to work in the fields. Several left the meeting disappointed and feeling left out.
“I felt like I went to waste my time… I went to sit and warm up a chair, as people would say,” said Stockton resident Griselda Juarez.
This disappointment was just the latest in a widening gap between police and residents, who point at the lack of outreach in their language and clear communication as the main obstacle to developing trust in the police. The local police chief has promised to provide interpretation in upcoming meetings, but residents are asking for more.
“Dialogue is good, forums are good, but you have to do work beforehand and develop the trust of the people,” said Luis Magana, an advocate for farmworker justice in the Central Valley.
Advocating for English Language Learners
This gap between language policy and its application is also on display throughout the education system, especially for students who learn English as a second language. Nationwide, there is a growing number of Spanish speakers studying in the U.S. schools. About 3.9 million public school students were counted as English Learners in fall of 2019, according to the latest data from the National Center for Education Statistics. This is about 76% percent of all language learners.
In response, some states have developed programs that aim to increase the number of bilingual graduates, but these face big hurdles to accomplish their goals. For example, California expects to have three out of every four students to be bilingual by 2040. They offer a “Seal of Biliteracy” program as an official recognition of proficiency in one or more languages in addition to English.
Officials had projected that the state would have 100,000 graduates earning the seal annually by now. However, only 57,000 students, or 13 percent of all graduates, earned a “Seal of Biliteracy” last year.
Part of the problem can be traced to the lack of dual-language programs in schools across the state. Research shows that English learners do better in dual-language programs because they acknowledge and incorporate their native language into their instruction, making it easier for students to solidify concepts.
Despite their effectiveness, only 97,000 students out of the million English learners in the state were enrolled in a dual-language program during the 2020-21 school year, the most recent year for which federal data is publicly available. Experts point to the lack of funding and the scarcity of bilingual teachers as the reasons behind this gap, urging the state to approach the problem as an equity issue:
“You’re gonna have to disproportionately put money towards English learners’ access (and) disproportionately, frankly, deprioritize English-dominant kids until you’ve rectified the imbalance that you built for 18 years,” said Conor Williams, a senior fellow at The Century Foundation, an independent think tank that conducts research and advocates for policy changes.
In other states, there isn’t even an agreement within school districts on what’s the best English-learning model to employ. Washoe district, NV, which includes Reno, employs seven different models of English language instruction across their schools, which means that students can have drastically different levels of proficiency and academic success depending on the model that their school decides to use. Only two schools in the entire district use a dual-language model.
The Office for Civil Rights in the U.S. Department of Education continues to receive complaints. In 2022, the office investigated 39 complaints surrounding access to services for English Language Learners. In the cases that it found discrimination, required the school districts to begin providing language services and communicating with parents in a language that they can understand.
In an effort to address these imbalances, states like Connecticut and New York have passed a “Bill of Rights” legislation for English Language Learners and their parents in all public schools.
Although there are already a number of laws and requirements in place to protect English Language Learners in Connecticut, the bill adds formal protections to these rights – including the right to attend public school regardless of immigration status, the right of parents to receive school forms in a language they can understand and the right for families to have a qualified translator at critical interactions with schools.
This law was pushed by people like Imelda Barajas. She immigrated to Hartford, CT from San Miguel de Allende, Mexico about 17 years ago. Even though she understands some English, she says she doesn’t speak it well. This obstacle has made it more difficult to raise her son, Adrian, who is now 15.
Adrian was diagnosed with Autism and is studying in a special education program at a Hartford public school. Even though having a qualified interpreter at meetings for planning and placement teams is a right for all parents, she said the district did not provide a qualified interpreter for her son’s meetings and received all communications in English.
“Ever since my son started at school, I’ve had to face a lot of barriers because there was never an interpreter at my son’s school. It was so frustrating that I would go home and cry with powerlessness sometimes,” she said in Spanish.
Her experience began to change when a friend invited her to join the “Mamás Guerreras,” or “Warrior Moms,” group as part of Make the Road Connecticut, a community advocacy group. She found out that she had the right to cancel a planning and placement team meeting if the district did not provide a qualified interpreter. She also started organizing other Spanish-speaking parents in the area to advocate for change in their children’s education.
“I didn’t know about the rights I had so I could advocate for myself and my son. So I had to educate myself to learn how to defend myself at the school and defend my son,” she said. “I know we can change this if we keep on fighting. I know we can make lots of changes if we keep on this path. We have to persist, persist, persist until they change this.”
Barajas has since spoken at countless public hearings, rallies, meetings and assemblies. Beyond the satisfaction of seeing her advocacy become part of a law, she won a small victory when she started receiving written materials from her son’s school in Spanish. She added that her son is learning and is acquiring better language skills.
Similar grassroots initiatives are pushing for better language access services for people with disabilities and their families in North Carolina, educating migrants on what programs are available and how they can apply for them.
“The help and resources are there, it is just difficult to find them. Everything is different for white people and African-Americans, compared to Latinos, more so if you don’t have documents and don’t speak the language,” said Jessica Aguilar, a Salvadoran mother of twins with autism who founded “Grupo Poder y Esperanza,” a support forum that helps and connects Latino families with children and adults with special conditions with services and resources.
Focusing on Civil Rights for English learners has become a policy priority of the Department of Education, said Montserrat Garibbay, the Assistant Deputy Secretary & Director in the Office of English Language Acquisition. She said that the current administration is promoting dual language programs, seal of biliteracy initiatives, immersion programs, parent webinars and other initiatives that promote bilingual education.
“When students have a strong foundation in their native language, it’s so much easier to learn a second or third or fourth language,” she said. “ When we uplift a students’ primary language and give them all the resources that they need, they can actually be successful”
Language of medicine
In the medical world, language barriers can manifest any place communication happens, said Dr. Lisa Diamond, associate attending physician at Memorial Sloan Kettering Cancer Center in New York. From ordering lunch from the hospital room to receiving complex treatment instructions, all communication between medical providers and patients is stilted when language barriers aren’t adequately addressed through a medical interpreter or language line.
According to Pew Research, in 2021, around 44% of 37,16 Latinos said that language barriers are a main contributor to them having worse health outcomes than other U.S. adults. Under half of the participants also said they have a close friend or family member who needs a Spanish-speaking healthcare provider or translator.
Those who rely on their children to translate, like María Canales’ parents, are exposed to misunderstandings because doctors can only partially gauge the language capabilities of the family member or friend asked to interpret in an appointment, Diamond said. They may struggle to understand and accurately interpret a doctor’s diagnosis or instructions because they don’t have the medical terminology expertise needed to translate the conversation.
Diamond added that a patient might be more hesitant to share their ailments in front of a loved one or vice versa. For example, some cultures consider cancer taboo, so a family member may misinterpret a diagnosis to soften the news.
“It’s not an evil intent at all… they’re trying to protect their family member from that news that they’ll say tumor or they’ll say mass, but they won’t say cancer,” Diamond said. “The doctor using a family member to interpret may not even realize that the family member is editing.”
A JAMA Pediatrics Network survey found that patients with limited English were less likely to advocate for themselves and ask questions at doctor’s appointments. As a result, they cannot fully communicate when they need clarifications or feel uncomfortable with the care offered.
Diamond remembers working with one medical professional who spent 20 minutes “chit-chatting” with their patient about their upcoming X-Ray exam without realizing that their patient hadn’t understood anything. She added that the patient had been hooked to an IV and needed to be transferred from the hospital bed to a wheelchair for the exam.
“It’s something as simple as getting from the bed to the wheelchair can actually be a big deal if you don’t speak English,” Diamond said.
The role of medical interpreters
The demand for language services in healthcare settings has opened the door for medical interpreters, professionals who bridge doctors and patients by translating and clarifying.
Kevin Thakkar, co-Founder and Executive Director of Americans Against Language Barriers, explained that medical interpreters also identify and help address cultural differences that may impact a patient’s adherence to treatment plans. For example, he explained that some indigenous patients are wary of Western medicines and prefer herbal-based remedies. An interpreter can bring this to a doctor’s attention.
Hospitals that receive Medicaid and Medicare are required by the Clinton executive order to provide interpreting services whenever a language barrier is identified or if the patient requests one. This could include live medical interpreters, language lines and video translation services.
Diamond explained that many of these services, especially interpreters, are considered an “unfunded mandate” since hospitals cover them directly. So, smaller health clinics and hospitals may not have enough funds to hire a full-time medical interpreter.
The consequences of not having a professional medical translator on site can be devastating.
Thakkar often shares with his students the story of Willie Ramirez and how one mistranslated word left him quadriplegic. Ramirez, an 18 year old star baseball player, arrived at his local hospital’s emergency room unconscious with his panicked non-English speaking family in tow on the evening of January 22, 1980. His family attempted to communicate with the attending staff, but no one understood Spanish.
Thakkar said Ramirez’s family described his condition as “intoxicado,” referring to poisoning. However, the doctor understood “intoxicado” as intoxicated and assuming he had overdosed on drugs, treated Ramirez as such. In reality, Ramirez had been experiencing an aneurysm that could have been treated if a neurosurgeon had been called on time.
“They didn’t really make an attempt to do a proper history. They treated him for the wrong thing and the aneurysm had progressed to the extent that he became quadriplegic and was no longer able to use his limbs,” Thakkar said.
Extensive training that goes beyond language proficiency is key to medical interpreting. Two years ago, Eastern Connecticut State University launched its “Medical Interpreting in Spanish” minor to encourage more students to enter the public health workforce as trained translators.
Department Chair of Health Sciences Dr. Yaw Nsiah said the minor is a dual language program offered by his department and the department of world languages and culture. There are fewer than 10 people currently enrolled in the minor, with most of the students studying Spanish as a second language.
In other parts of the country, local healthcare systems are experimenting with other approaches. In Yakima Valley, WA, MultiCare Yakima Memorial, the largest hospital in the county, and the Farm Workers Clinic have developed a model that combines multiple layers of language support.
The hospitals have partnered with services that offer training and testing for their health care providers so they can become certified as medical interpreters or become proficient in another language. In 2022, more than 50 providers at Yakima Memorial passed the certification exams, said Bertha Lopez, director of diversity, equity and inclusion at the hospital.
In addition, the interpreters on staff are paired with the same medical providers consistently, which allows them to pick up their speech patterns and ways they like to convey information.
“My MA (medical assistant) that I’ve been working with for almost the 10 years I’ve been here, she is already anticipating what I’m going to say,” said Amber Shapton, a nurse and primary care provider at Yakima Valley Farm Workers Clinic. “For example, I always say the same things when I’m talking about constipation. So when I talked about that, she’s already anticipating what I’m going to say based on the topic we’re talking about.”
The hospitals also incorporate language services even before patients arrive at the building. For example, when a Spanish speaker calls to set up their first appointment, and indicates that they prefer communication in their language, staff will add a note to the medical records that will ensure that all appointments, discharge papers, prescriptions and communications will be in Spanish from that moment on.
Like many other healthcare providers, the Yakima area hospitals had to adapt to remote care for some ailments during the pandemic, but the changes they implemented to reach a population as vulnerable to the virus as Latinos helped them add another tool to their language model. Memorial’s telehealth service comes with remote video interpreting, which allows healthcare providers to follow-up on patients and ensure that their instructions are being followed.
Life of translations
Approximately 13% of Hispanics who are 65 or older have Alzheimer’s or another dementia, according to the Alzheimer’s Association. However, Canales noticed that the resources and education weren’t available in their native language.
Canales started volunteering with the Alzheimer’s Association in Connecticut after learning they didn’t have a Spanish-speaking community educator. In her role,
She connects “time and time again” with Latinos needing services who had no idea what was available because the information wasn’t in their native language. She said this sparked a lifelong passion to bring health-related education in all languages. It has also given her an understanding of the language barrier and how it affects people.
“Language, with all the technology we have, shouldn’t really be a barrier to understanding, communicating and interacting with other people,” Canales said. “There’s so many other barriers that we have…language should just be a gateway to have started that conversation.”
This story is part of “More than Words,” a Report for America initiative that brought together newsrooms covering Latino communities in eight states to examine the impact of language barriers on the social, economic, and educational advancement of Latinos and the local efforts to close this gap.
This project is made possible by
The post Despite a federal executive order, many places don’t offer translation services appeared first on The GroundTruth Project.
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