Panel on communicating with deaf patients gets early lesson when interpreter can’t be seen

A new task force seeking to improve access to sign language interpreters in health care settings was less than an hour into its first meeting Monday when its leaders realized they did not have an American Sign Language interpreter visible to people watching the meeting online.

The oversight perfectly highlighted the challenge members of the Deaf and hard-of-hearing communities face in a world not geared to them, some of which the task force was set up to address.

“This forum is happening in spoken English for the most part, but the interpreters who are here for us in the room are not accessible to those who are joining online,” said Emily Blachly, who is deaf and a teacher at the Maine Educational Center for the Deaf and Hard of Hearing. “The Deaf community is very interested in the work this task force is doing, and it would have been beneficial for access to be completely available to those remotely.”

The task force took a 30-minute break to ensure that signers were visible on the stream before resuming its work. But the oversight was not lost on the task force co-chair.

“We have a lot to learn,” said Sen. Henry Ingwersen, D-Arundel. “This demonstrates the work we have to do.”

The Legislature formed the Task Force on Accessibility to Appropriate Communication Methods for Deaf and Hard of Hearing Patients last session. But the issue has taken on more significance in the wake of the Oct. 25 shootings in Lewiston, in which four members of the Deaf community were among the 18 people who were killed. One, Joshua Seal, was a prominent ASL interpreter.

Five of the 13 people who were injured also were deaf.

State officials and TV stations failed to include sign language interpreters onscreen during the initial media briefings in the immediate aftermath of the shooting, as police were searching for the shooter. And deaf victims and their families struggled more than others to get information from local hospitals.

As police conducted a sprawling manhunt for the shooter, ASL interpreters were prevented from entering the hospital for hours to help the wounded communicate with medical professionals and relay information to concerned family members, some of whom waited outside desperate for information.

“We can’t discount the events in Lewiston that in the face of a crisis, we really need an effective way for people to communicate and for their concerns to be heard and for the providers to be able to respond in a way that makes sense to people,” said Rep. Colleen Madigan, D-Waterville.

Around 12 million people in the United States, including around 70,000 Mainers, consider themselves deaf or significantly hard of hearing, according to the U.S. Census Bureau’s 2021 American Community Survey. That’s 3.6% of all U.S. residents and 5.1% of Mainers.

Betsy Hopkins, the assistant director of the state’s Office of Aging and Disability Services, said the state worked with the Deaf community after the shooting to develop a two-page information sheet that has been distributed to hospitals describing the best practices for treating deaf and hard-of-hearing individuals.

“I think this is such a timely topic for so many reasons,” Hopkins said.

The seven-member task force includes four members of the Deaf community, who said hospitals need to give patients the choice of having either an in-person ASL-certified interpreter or a remote virtual interpreting service.

“Hospitals are often making the decisions for us, and we have the right to make those decisions with dignity,” said Sitara Sheikh, who grew up deaf and originally relied on her parents for interpretation. “I would like for this task force to consider statewide systems for access and make sure there is that equity for our deaf individuals regardless of where they live.”

ISSUES WITH VIRTUAL INTERPRETATION

Deaf task force members said that hospitals and other health care providers are focusing mostly on the virtual interpreting service and it’s negatively impacting their care. Often, they said, the hospital’s public Wi-Fi systems don’t have enough bandwidth for the virtual service, which leads to disruptions and dropped calls. And lip-reading often can lead to mistakes.

The lack of high-speed internet – and thus access to high-quality virtual interpretation services for deaf patients – is especially common in rural areas, they said.

Sheikh said physicians spend too much time trying to get the technology to work for a virtual interpreter and even then it can be difficult to see the interpreter on a relatively small computer screen. And when a video call gets dropped, often a new interpreter picks up the next call, forcing patients to repeat themselves.

“You have to start all over again explaining the situation and all the information,” Sheikh said through an onsite interpreter. “When you’re ill, you don’t want to have to repeat yourselves over and over.”

Tommy Minch, who represents Disability Rights Maine, a nonprofit that advocates for enforcing and expanding the rights of people with disabilities, would like to see more hospitals use more in-person ASL-certified interpreters, which might require an increase in pay and training to bolster the ranks of such interpreters available. That would go a long way, he said, to giving patients a choice in communication methods that are best for them.

“My hope for this task force is that we can ensure that all of the hospitals and clinics and doctors’ offices are going to provide the options and not just video remote interpreting services,” Minch said through an onsite interpreter. “We are not all the same. … Each one of us has different needs.”

The task force is supposed to wrap up its work and issue a report by Dec. 15.

Ingwersen, the co-chair, said the group may need to ask lawmakers to be able to continue working through next summer.

“This is such an important topic, and we need to take the time to gather the information we need,” Ingwersen said. “I don’t think we should rush this issue.”