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Jody Newman estimates that she’s been hospitalized 20 times in the past 20 years. To be honest, she says, she’s lost count.
“I had many counselors over the years, and they just didn’t work for me. I was suicidal, and didn’t know how to cope with myself or situations,” said Newman, 58, of St. Louis, through an American Sign Language interpreter one recent afternoon. “But not now.”
Two years ago Newman, who has been deaf since she was 5, met Irvine Stewart, and her life hasn’t been the same since. She’s happier; more stable.
Stewart is a caseworker and member of the Deaf Services Team at BJC Behavioral Health in Kirkwood. Laura Shapiro, clinical supervisor, and Sarah Lograsso, case manager, make up the rest of the team. All three are either deaf or hard of hearing. They are the only caseworkers of the sort in Missouri.
The team “came out of a need expressed during several town hall meetings of the deaf community here,” says Schapiro. “About 100 people showed up for each meeting, saying there are no clinicians we can go to who understand what we’re talking about.”
They were tired of trying to communicate through interpreters, Stewart says. Interpreters change the dynamic of counseling. Meanings get lost in translation without the patient realizing it, and it’s often hard for the psychiatrist to get a deaf client to understand his or her diagnosis through an interpreter because the client’s vocabulary is unique and often limited.
“It’s also not as intimate and the trust is harder to get,” Stewart says. “They don’t trust the third person. It’s awkward.”
BJC Behavioral Health treats clients with serious chronic mental illness, including depression, bipolar disorder and schizophrenia. Missouri has about 1,100 deaf people with those types of issues. And 20 percent of them are children.
Historically, the state of mental health treatment for deaf people has been dismal, which is odd, Shapiro points out, because there are two schools for the deaf here.
Two years ago the Missouri Association of the Deaf and 13 deaf residents sued the Missouri Department of Mental Health and Missouri Department of Social Services, claiming that the agencies weren’t helping deaf clients and were wasting money on interpreters rather than using it to find therapists and counselors fluent in American Sign Language.
Lograsso points out that only 10 interpreters are trained in American Sign Language in the state and that providing services for deaf people can be a lot more costly than serving people with other disabilities.
“Bills for interpreters never stop, and they cost between $50 and $75 an hour with a two-hour minimum,” she says. “And most therapy groups are under 10 people, so they don’t have to hire an interpreter or make accommodations.”
The suit was settled earlier this year when the state agreed to provide more interpreters, enhanced mental health treatment and create a 24-hour crisis hotline for deaf people.
The settlement gave no stipulation that the interpreters be deaf. And the BJC Deaf Services Team was not a result of the suit. It was, in fact, created two years ago about the time the lawsuit was filed.
The staff at BJC Behavioral Health came up with the idea. Finding qualified candidates wasn’t easy though.
Only four colleges in the nation have social work programs for deaf people, and they’re in Texas, California, Washington, D.C., and Arizona.
“And those students tend to stay in those places,” Shapiro says.
Stewart and Lograsso, both graduates of Gallaudet University, a liberal arts university in Washington for deaf people, are from Missouri. Shapiro knew that when she asked if they’d be interested in joining the team.
COPING BETTER
Newman and Stewart spent a counseling session recently discussing difficulties that she was having communicating with fellow residents at the Mary Ryder Home, an assisted-living facility for women in the Central West End.
Newman has a video phone, but it doesn’t always work.
Stewart taught her how to use radical acceptance, a tool in Dialectical Behavioral Therapy, when things go bad. It helps her focus on improving the moment through mindfulness and problem solving, rather than letting her emotions get the best of her.
“What about using a pen and paper or a whiteboard?” Stewart asked. “Maybe there are days when you feel frustrated with communicating, and you can write on the board to make things clear.”
They talked about how she has to be patient with the other residents and that they have to be patient with her. Stewart constantly validates her feelings. He knows that being deaf in a hearing world isn’t easy.
Newman remembers the first time she met Stewart.
“How to describe it ...” she said, pausing to think. “I was describing me, and he got it. Someone finally got it. He told me about my diagnosis, and I finally understood what had been bothering me through the years.”
Lograsso estimates that 70 percent of people who are deaf suffer from personality disorders or trauma, because they’re often abused or exploited.
And if they come from a poor socioeconomic background or rural areas, there are few resources for them and their families. Often they have no insurance, no transportation, no income, no friends.
Caseworkers are the first to meet with the clients when they seek treatment at BJC Behavioral Health. They take their histories and assess their needs before turning them over to psychiatrists.
And sometimes, that’s not even necessary.
According to Stewart, family members often think deaf clients have bad attitudes or are mentally ill because they stamp their feet or flip light switches off and on. In reality, though, they’re just trying to get someone to pay attention to them and understand their needs.
“We have patients come and say, ‘My family told me to come here because I need medication,’” Lograsso says. “And during assessment, we realize it’s just a matter of communication problems.”
Right now, the team is working with 60 clients with major mental illnesses and has a waiting list. A fourth deaf caseworker will soon begin working at the center, focusing on telemedicine. One day, Shapiro says, they’d like to work with deaf people with developmental disabilities as well.
Dr. Donald Bohnenkamp, a psychiatrist at Washington University, treats deaf patients at the center. The deaf services team taught him how to greet patients with American Sign Language. They’ve also educated him on deaf culture. Sometimes they step in during counseling sessions to sort out misunderstandings.
Psychiatrists tend to ask generic questions that don’t make sense to deaf people. For instance, when it comes to delusions, they’ll ask patients if they are hearing voices.
Lograsso or Stewart will change the questions to ask the client if people on television are signing to them, or if they are signing to people on television.
“It’s a huge benefit, because they grew up in this culture and can explain things to me,” Bohnenkamp says. “It puts the clients at ease to know that someone there had some of that shared experience. They don’t get that very often, especially with psychiatrists. And it’s not something I can necessarily provide for them.”
Before coming to BJC Behavioral Health, Newman had been on a lot of medications. Many times, she didn’t know what they were for, because no one explained them to her. She accidentally overdosed once, she says.
But Bohnenkamp is different, she says. “He took the time to explain why I was taking each medication. Things are going so well, she says, that they’ve eliminated one or two medications and are getting ready to reduce the dosages of others. She also hasn’t been hospitalized since she met Stewart.
She says she’s been using the coping techniques she’s been taught to help deal with her emotions.
“I’m so excited,” she says. “I hope I can get to no medications.”
In Kirkwood, deaf caseworkers bring vital skills to their job : Stltoday