Part one in a two-part series.
John Silva was suddenly taken to Hartford Hospital following a brief stroke-like attack last year. He is deaf and has relied on the hospital’s American Sign Language interpreting service for over 40 years.
John and his wife Kim, who is hard of hearing, expected to have access to in-person interpreters. However, no in-person sign language interpreters were available when they arrived. Medical staff could also not find the video remote interpreting (VRI) system, typically on an iPad or computer.
Kim Silva said the staff eventually located a VRI system, but only had access to it for an hour since other patients also needed it. John Silva was left to wait six hours for an interpreter to arrive. An in-person interpreter eventually arrived to care for another patient but was able to stay with John and Kim for an hour.
Ultimately, John needed to undergo a series of examinations and scans with lip-read instructions and relied on a speech-to-text transcriber he provided during the discharge process.
The Silvas, of Hartford, are just one of hundreds of deaf, hard of hearing and deafblind Connecticut residents experiencing issues accessing sign language interpreting services at medical centers across the state, resulting in worsened health outcomes for the community.
“Something’s wrong with the system,” John Silva signed. What’s the law?
The Americans with Disabilities Act requires that all health-care providers offer patients effective communication means through auxiliary aids or services and promptly supply them for free. Accommodations for individuals who use sign language can include in-person or video remote interpreting with qualified interpreters, notetakers, cued speech translators, tactical interpreters or text-based services.
The law requires that hospitals obtain and pay for interpreter services and can’t request patients to bring their own interpreter to an appointment. Patients also have the right to request a different communication means or a different interpreter than the one provided.
Most medical providers will provide more than one communication style type; however, these are often limited, especially regarding in-person interpreting, said Luisa Gasco-Soboleski, president of the Connecticut Association of the Deaf and friend of the Silvas.
“We want equal access and if there's no interpreter, then we don't have equal access,” Soboleski, of Southington, expressed through sign language.
National studies show that communication issues can result in worsened health outcomes for people who are deaf, hard of hearing, or deafblind, which is a combination of vision and hearing loss.
For example, a comparison study on access for deaf individuals by Idaho State University found that people who are deaf have fewer physician visits due to communication issues but are more likely to access care through an emergency room. In a medical appointment, lack of communication can lead to misunderstandings of diagnosis, poor adherence to treatment regimens and patients being less likely to ask questions or advocate for themselves. This could also contribute to feelings of fear, mistrust and frustration.
Among patients who didn’t receive the interpreting service they requested, 82% couldn’t understand their diagnosis, 70% couldn’t understand the treatment guidelines, and 63% discontinued their care in 2010, according to a study in the Journal of Evaluation in Clinical Practice.
Following her husband’s stroke-like attack, Kim Silva said she’s terrified of hospitals and the potential treatment they would receive. The Silvas said they experienced issues during the follow-up appointments at the Hartford Hospital Stroke Center with medical staff not knowing where their video remote interpreting system was located or how to use it. They also didn’t have in-person interpreters available. She said it felt like they were “drowning” every time their requests for in-person interpreters or VRI were dismissed.
“Nobody knew what I was talking about,” Kim Silva said in English and in American Sign Language. Routine appointments hardly routine
Just setting up an appointment can be a challenge for a person who is deaf, hard of hearing or deafblind, said Gasco-Soboleski.
Cherry Byrnes, who is deaf and blind, has had over 30 appointments canceled since January because an interpreter wasn’t available. The Manchester native began losing hearing and sight as a teenager and has been using tactile interpreters since.
Unlike sign language interpreting, tactile interpreters sign into their client’s hands, which allows the client to follow the conversation through motion. In addition, tactile interpreting requires more in-depth descriptions, such as setting, describing people’s clothes and their actions.
Byrnes has had to switch health providers throughout the years due to the lack of tactile interpreters. She said that routine appointments, such as her physical, were being constantly rescheduled even though she was experiencing migraines and joint pain. There were also many times when she arrived at her appointment on time, but a tactile interpreter wasn’t available, so she was dismissed by medical staff.
For example, Byrnes said she was discharged even though she complained about pain to the doctors. A few days later, she was taken to the emergency room, where doctors discovered two hernias after an interpreter helped her communicate.
Even with video remote, Byrnes said she still needs a tactile interpreter to help describe what the remote interpreter looks like and what they are signing to her.
Whenever she brought up her need for a tactical interpreter with the medical staff, she felt they were pointing fingers to explain the lack of an interpreter.
Medical centers are “blaming interpreters and interpreters [are] blaming health care, who knows where the problem or the breakdown was,” Byrnes said in American Sign Language. “But in the meantime, I just need interpreters and was being ignored and pushed away.”
Byrnes currently has lost 90% of her vision and the doctors that have met with her said that the additional stresses worsened it. She added these constant cancellations and rescheduling are taking a toll on her immediate family, especially her daughter, who is now Byrnes’ full-time caregiver.
“I want to fight for my rights. I want to get my interpreters,” she said. “I need to meet with the doctors to meet my needs. (Health is) very important to me, I can't stop. I need to fight for this.” What’s happening in Connecticut hospitals?
According to the Centers for Disease Control and Prevention, an estimated 5.6% of Connecticut residents 18 years or older have a hearing disability. The highest rates are among residents over 65, making up 16.3%.
Gasco-Soboleski said Connecticut was one of the leading states in deaf, hard of hearing and deafblind services and accommodations for a long time.
A statewide needs assessment released in February from Innivee Strategies and the American School of the Deaf, based in West Hartford, found many other deaf, hard of hearing and deafblind residents took similar pride in Connecticut’s services.
For example, Connecticut was the first state to create a Commission for the Deaf and Hard of Hearing in 1974 and implement telecommunications devices and interpreting services in hospitals in the 1990s.
Gasco-Soboleski explained that the commission acted as a watchdog to address grievances and provide training to businesses and medical centers. It was also the central resource for medical centers to hire interpreters. However, she said that the commission shut its doors in 2016, significantly worsening communication access for all deaf individuals throughout the state.
As of February, only 50% of the 101 deaf, hard of hearing and deafblind respondents felt that current interpreting standards in the state were satisfactory, according to the report from Inivee Strategies and the American School of the Deaf. Meanwhile, over 65% felt interpreting standards needed to be established.
For example, more than 40% of the respondents said they prefer in-person interpreter services to communicate with a medical provider; however, they were instead provided with video remote (30%), paper and pen (22%), lip-reading (18%) and gesturing (11%). Similarly, over 60% reported receiving their preferred communication method never or only sometimes
In addition, even if all the technology worked properly, many respondents said that video remote is an insufficient form of communication since sign language relies on body language and physical space, which may not translate through a screen. There are also regional grammatical and linguistic components of sign language that an interpreter from outside the state may not know.
The statewide report found that the only hospital system with several sign language interpreters on staff is UConn Health. As a result, respondents traveled over an hour to receive care.
Gasco-Soboleski added that the lack of a centralized group like the commission makes reporting civil rights violations much more difficult.
For example, the state Attorney General’s Office has settled four lawsuits against Connecticut hospitals since 2019.
In addition, the Silvas and Byrnes have met with their hospital system after filing grievances with Soboleski’s help. However, they are unsure what the next steps are. More than just Connecticut
However, Commissioner Amy Porter of the state’s Department of Aging and Disability Services emphasized that the issues with providing sign language interpretation are not unique to Connecticut.
There has been a shortage of sign language interpreters for many years, she said.
The number of interpreters working in Connecticut is generally similar each year; however, not all the interpreters are local, Porter said. Interpreters working remotely outside of Connecticut are still required to register with the state, she said, so the number of in-person interpreters is smaller than the number registered, making it more difficult to track.
There are currently 362 registered interpreters in Connecticut, according to the Deaf and Hard of Hearing Interpreter Registry. However, Porter said that more and more interpreters are opting to work remotely due to its ease and flexibility. In addition, not enough people are entering the interpreting field to balance it out.
“We have some phenomenal interpreters in the state but … I think there's not a lot of new folks coming in, so that's an issue that I think we'll need to address,” Porter said.
Hartford HealthCare declined to comment on individual complaints but discussed the organization’s efforts to address the barriers.
Gerry Lupacchino, senior vice president of human experience with Hartford HealthCare, said that many hospitals, including Hartford HealthCare, face challenges in providing interpretation, such as consumers’ changing communication preferences, high turnover of staff and the interpreter shortage.
Similarly, Lupacchino noted that although many individuals in the Deaf community prefer in-person interpreting, the shortage makes hiring them difficult, especially in emergencies, since the other hospital systems are also competing for their services.
Lupacchino also said VRI options are available at all Hartford HealthCare locations, and with turnover, it’s important to be sure staff members are trained. He estimated that 52% of current frontline staff are new to Hartford HealthCare and many will rise through the ranks to fill leadership roles. Lupacchino explained that this high turnover makes tracking who has received VRI training difficult. He added that sign language training resources through outside resources, such as community colleges, have decreased over the years.
“There wasn’t a go-to person per se that felt the highest level of confidence and competence in managing or facilitating the use of the device,” Lupacchino said. “We've been working on making sure that that's more consistent as well.” Barriers’ impact?
As hospitals work to address these access issues, the needs of the deaf, hard of hearing and deafblind are often not met. For example, when Mark Bouchard was hospitalized for suicide ideation and addiction recovery, he never imagined how frustrating accessing basic services would be.
Bouchard, who was born deaf, was admitted to Meriden’s MidState Medical Center for overnight hold and mental evaluation in late June. Between grieving his father’s passing the year prior, recovering from alcohol addiction and years of inconsistent employment, he thought his life was over.
Even though he requested an in-person interpreter, Bouchard was provided a VRI device during his overnight stay because he was told it was his only option.
“On top of already being in this fragile state, now I have to try and communicate with hearing people who don’t understand my language,” he said in sign language.
Following the discharge from MidState, Bouchard was transferred to Hartford HealthCare’s Institute of Living in Hartford for inpatient mental health services. He said the staff were attentive there and provided an interpreter for most of his stay. However, he noted that the Institute of Living had recently reached a settlement in a lawsuit regarding sign language interpretation and felt that he was receiving the resulting benefits.
Bouchard was eventually transferred to Rushford Medical in Meriden for outpatient service and support group five days a week with an in-person interpreter. He explained Rushford had around two weeks to hire interpreters before he started because of a family vacation to Cape Cod that he had scheduled earlier in the year.
He hoped that the two-week break between care could act as a buffer period for Rushford to secure interpreters. However, Bouchard said that access ended up being “hot and cold.” He said that sometimes he’d have an in-person interpreter, while on other days he would need to rely on VRI, which is difficult in a group setting. He described how he would run around the room with the VRI, so the interpreter on the phone could hear what the group member was saying and then sign.
Although he brought up his concerns to the medical staff, the in-person interpreter service was still unreliable. Bouchard said that these additional stresses left him “deflated” and ultimately pushed him to relapse into drugs after two years sober.
“If I were a hearing person, I would just be able to go into this facility and, boom, my recovery would be on track,” Bouchard said. “Whereas, now, because of all these issues, I feel like my recovery was really delayed.”
Despite these challenges, Bouchard was hopeful to continue working with the Rushford support groups after developing meaningful relationships with the members. However, Bouchard said he was asked to start attending support groups in Waterbury, which he described as a “toxic” area due to easy access to drugs and alcohol.
Bouchard said the staff responses to his needs felt cold and uncaring, especially after a good experience with the Institute of Living.
“It’s infuriating … to carry this load all of the time. I don’t understand how that could ever be considered an equitable experience. It definitely doesn’t feel fair,” Bouchard said.
Since finishing with Rushford, Bouchard has been working on his mental health with his therapist and has built support through his connection in the Deaf community. For example, Bouchard began working with Gasco-Soboleski at the Connecticut Deaf Association and filed grievances against MidState and Rushford.
“To make an analogy, nobody wants to drown, right?” Bouchard questioned. “We all want to be able to keep our head above the water, but I feel like hearing people have this life jacket and deaf people don't. We're just constantly treading, trying to keep our head above water, and it almost feels like when they deny us [communication] access, they sort of shackle us, pulling us under.”
Health Equity reporter Cris Villalonga-Vivoni is a corps member with Report for America, a national service program that places journalists in local newsrooms. They can be reached at firstname.lastname@example.org and 203-317-2448. Support RFA reporters through a donation at https://bit.ly/3Pdb0re.