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Charlotte, North Carolina – When Ana Beatriz López González went into labor on September 21, 2022, she was rushed to Atrium Health Carolinas Medical Center by her family.
López González, who is deaf-mute and has trouble communicating because she doesn’t know American or Spanish sign language and doesn’t know how to read or write, was assigned to the maternity ward on the eighth floor of the hospital. Her sister, Jessy López, accompanied her during the registration process and her brother Nelson stayed with her until 11:00 p.m., when the security guards asked him to leave.
When they returned to the hospital the following day, the López family couldn’t see Ana Beatriz. The receptionist told them that their family member wasn’t in the system and because of that they couldn’t enter. For Atrium Health Ana Beatriz, who is a permanent U.S. resident, “didn’t exist.”
Although this is an atypical case, hundreds of Latino families in North Carolina who care for a disabled person face challenges to access services, treatments, and support due to a lack of resources and knowledge of the system.
This barrier is not limited to healthcare. Parents who don’t speak English have trouble signing up their children with disabilities in state programs, or miss opportunities to access support programs because they can’t find information in their language or don’t know anyone who can help them sign up. This leads to development delays in children and, in the case of healthcare, situations that endanger the lives and health of patients.
These challenges have motivated some families to create networks where they offer help and educate the community about the existing resources, as well as lobbying the local and state governments to provide more options for disabled and their families who don’t speak English.
The consequences of a misspelled name
From the moment that the López family was told that Ana Beatriz “didn’t exist” in the patient directory, they tried every possible way to find out what happened to her, but no one at the hospital gave them any information. On October 2, they took to Facebook to make the case public and denounce that hospital employees had threatened them with arrest for trespassing if they continued their inquiry.
The López family contacted the police, the consulate of El Salvador in Charlotte and consulted with lawyers to find Ana Beatriz and her baby, which by that point, they assumed, had been born. The case became well known in the local Latino community, giving room to multiple theories, but few certainties.
After weeks of silence, Jessy López told Enlace Latino NC that Ana Beatriz and her daughter were healthy and already at home with them, but declined to provide more details about what happened.
The hospital didn’t provide answers either, referring to federal privacy laws that prohibit sharing information about patients.
“If you provide a name that is misspelled, I can’t give you an update on the condition of the patient. The name has to be spelled exactly as it appears in our directory of patients,” said Kate Gaier, spokeswoman for Atrium Health to Enlace Latino NC.
Gaier added that “Atrium Health has a language access department that works to close the communication gaps between patients and providers, reduce barriers to the access to quality medical care and advocate for patients and family members who may have a limited command of English, those who are deaf or have hearing impairments.” The spokeswoman also pointed out that language assistance is available for free for patients 24-7.
However, Atrium didn’t explain why there wasn’t clear communication between their employees, Ana Beatriz and her family. It also didn’t explain what role its language access department played in this case, if any; why it took so much time to find Ana Beatriz in their system and what type of agreement they reached with the family to settle the case.
Navigating an unknown system in an unknown language
“I heard about the case. Quite a distressing situation, but also very striking to see how a woman her age had no way to communicate with others outside her family,” said Jessica Aguilar, a Salvadoran mother of twins with autism.
Aguilar knows the feeling of helplessness that comes with the language barrier because she had to navigate through the diagnostic process for her children without speaking English. “When I had my kids I was bombarded with diagnoses and words I had never heard before. I didn’t understand a thing. It was all very stressful. To communicate they had to find an interpreter and sometimes they wouldn’t even do that because it was an urgent decision. I had to say ‘yes’ to everything,” she said.
Her pediatrician gave her a directory where she could find resources for the education and support of her children, but when she called the organizations they always answered in English and often would hang up when she asked to speak in Spanish.
With the resolve to not be pushed to the side, Aguilar decided to learn English on her own and study the médical terms related to her son’s condition. With a dictionary in hand and using online materials, she started to learn the language.
That knowledge empowered her to manage her son’s condition, find programs and resources and navigate the healthcare and education systems of the state.
Throughout her learning process, Aguilar, 40, met other families who faced the same challenges, which motivated her to create the “Grupo Poder y Esperanza," a support forum that helps and connects Latino families with children and adults with special conditions with services and resources.
Aguilar pointed out that if the López family had been connected to a support group or had the knowledge of what to do in a situation like that, maybe they wouldn’t have had to have such a difficult experience.
“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, moreso if you don’t have documents and don’t speak the language,” said Aguilar.
Knowing your rights
One of the places that offer those resources is Disability Rights North Carolina, a private organization that advocates for the rights of people with disabilities in the state and who offers its services in Spanish. Vivianette Ortiz, a bilingual advocate at the organization, acknowledges that from the perspective of an immigrant, looking for help can be intimidating.
“Ever since I’ve been here I have realized that many people don’t know their rights or even where to start when they need help. We get calls asking for help with many things: from immigration services to housing, depression and anxiety support, physical and mental disabilities and even emotional support,” she said.
The demand for these services is significant, given the number of people with disabilities in the state. According to the report from the Centers for Disease Control and Prevention (CDC) updated in 2021, North Carolina has 2,460,352 adults with disabilities, 29 percent of the state’s population or about one in every three adults. But according to Disability Rights NC, that number can exceed three million by adding children with disabilities.
The CDC report doesn’t break down the data by race or ethnicity, but according to data from the 2020 Census, 97,043 Latinos in the state reported some type of disability, a number that doesn’t include many undocumented. The data also doesn’t specify how many of the respondents don’t speak English, which contributes to the lack of visibility of this problem.
What to do if you need help
For Ortiz, the first step for a family that has a member with a physical or mental disability is to speak with the health professional who made the diagnosis. But for those who don’t speak English, demanding information can be intimidating.
“Don’t say yes without understanding. Many times, because of fear, we say yes without understanding what people are telling us. Promise yourself to put aside the fear to ask for help or explanations. You are your best defender and the best defender of your child or family member because nobody knows them better than you,” said Ortiz.
The bilingual advocate recommends asking for an interpreter in each hospital or doctor’s office you go to, given that in many of these places it is required to provide you with one if you request it.
Although Ortiz believes that the state agencies have increased their options to provide information in Spanish, as well as their number of bilingual employees, there’s still a long way to go.
The language barrier remains present beyond the on-site services, making it difficult for families to know what’s available to them. “Another challenge is the lack of awareness of the rights and laws that protect people with disabilities and their families and in this case Disability Rights North Carolina can provide information or help the families know what are the next steps.”
Aguilar also acknowledges those obstacles and through her group and the organization NC Child, she has taken a more active role to advocate for systemic changes. “We go beyond that. We advocate for the availability of documentation in Spanish so that families can understand, for example, the changes in Medicaid. We attend legislative gatherings in Raleigh to make suggestions to the Department of Health and the lawmakers to improve the conditions of people with disabilities,” she said.
The extra barrier for the undocumented
Undocumented Latinos face additional challenges, according to Ortiz. “When
an undocumented person contacts us, on top of the language access issues and the lack of knowledge of the services, they have a fear of the consequences of using those services” and be identified by the authorities.
Every disabled person, regardless of their migratory status has a right to receive “reasonable adaptations” to have equal access, says Christopher Hodgson, a lawyer with Disability Rights NC. This means that they can request and receive support or changes in the programs to guarantee equal opportunity and participation in the labor market, public programs, and services.
For example, a blind person can request materials in braille to access written materials in school, the deaf can request interpreters to communicate in an effective manner with their doctors, and people with reading impairments can ask for someone who reads them the materials. These adaptations can be requested in the language spoken by the disabled person.
“And those are just a few examples. There are many more ways to support and help disabled people adapt to participate in an equal way in their communities,” said Hogson.
Although people with disabilities have these rights, the gap between the letter of the law and what happens, in reality, is still wide. Many families with disabled members (like the López) are at a disadvantage at the time of accessing services and procuring what they need to live in community, says Aguilar.
“It’s still difficult, even if they know English and have papers. The laws are there, but not the resources. If it was that easy, there wouldn’t be so many organizations and groups fighting for the rights of the disabled,” she said.