Group home fills a need for mentally ill deaf people.
Regional center offers mentally ill deaf people a chance for new lives.
By Stacey Burling
Inquirer Staff Writer
Celine Dreher cannot hear you, but sometimes she can hear Sarah, a creation of her malfunctioning brain who "speaks" to her from inside her head.
This medical double whammy - deafness and schizophrenia - has left Dreher, 44, feeling doubly isolated for much of her life. She was the only deaf person in her group home, the only deaf person at the psychiatric hospital.
"I felt like there was no communication," she said through a sign-language interpreter. She sometimes had to write notes to fellow patients and staff.
Dreher is now part of a rare and growing program called the Deaf Services Center, which serves 130 people from throughout the region who are deaf and seriously mentally ill.
She lives in a set of apartments operated in Roslyn for people like her. One day this month found her at the center's day program in its Glenside headquarters, happily playing cards with other sign-language users.
"I felt like I needed to be around deaf people," said Dreher, an animated, outgoing woman in an Eagles cap. "This is just wonderful."
While there is a smattering of programs in Pennsylvania and New Jersey that offer acute hospitalization, residential placement or day programs, experts said none was as comprehensive as this one in Montgomery County.
"It's quite unique," said Roberta Altenor, an official with the Pennsylvania Office of Mental Health and Substance Abuse Services. "Certainly, there are other community mental-health centers that provide services, but no other agencies provide to the extent that they do."
The Deaf Service Center's director and most of its staff are deaf. All are fluent in sign language. The center provides residential and day programs, intensive case management, and outpatient therapy. The for-profit program recently accepted its first mentally retarded resident and is planning a program in Philadelphia for deaf, mentally ill adolescents. Its $2.9 million budget comes from a combination of state and county funding and insurance reimbursements.
"Because we're the only game in town, we have to meet the needs of a really diverse population," said Wendy Heines, a social worker who is the program's vice president and chief operating officer.
Heines, 52, was hard of hearing as a child, and her hearing has grown progressively worse. She considers herself deaf, though she can communicate by phone when the caller's voice is amplified. She signs fluently, speaks and reads lips.
Heines believes it is essential that deaf people with mental illness be able to communicate with counselors. "The tool that is used to treat behavioral-health disorders is communication," she said.
Deaf people experience the same symptoms of mental illness as hearing people, including delusions, confused thinking and auditory hallucinations, Heines said. They "hear" what they perceive as whispers or voices. "It may not be what you experience as a voice," she said. "It doesn't matter, because it's coming from their head."
Their sign language can be just as baffling as the speech of hearing people in the throes of psychosis. Untrained interpreters sometimes try to make sense of it, which just makes it harder for therapists who don't understand sign language to discern what's wrong. The center's interpreters translate precisely, no matter how odd the conversation.
According to the National Center for Health Statistics, about one quarter of 1 percent of the United States population are unable to hear and understand any speech. The percentage should be the same for people with mental illnesses, Heines said. Pennsylvania's mental-health system serves about 200,000 people.
A New Jersey Department of Human Services spokeswoman said state programs served almost 2,000 mentally ill people with "auditory conditions" out of its total of 340,000 clients.
The Deaf Services Center grew out of Jane and Richard Hender's search for help for their daughter, Erin, in the late 1990s.
Montgomery County suggested a group home for hearing people to the Abington couple. "If they have a fire drill and she's in the bathroom, how are you going to notify her that there's a fire?" Jane Hender wondered. And how would her daughter benefit from her treatment when she couldn't communicate well with staff? "It's the same as going to the doctor and having your tongue cut out."
The Henders pressed for more, and Erin was among the first residents of the center's new apartments in 2001.
Now 32, she still lives there. Lights signal visitors and phone calls, and beds vibrate during fire drills.
"It's worked out wonderfully well," Jane Hender said. "... It just gives her freedom to be who she is."
The program meets deaf people where they are, allowing them to remain part of deaf culture. Deaf people can never be fully integrated into the broader culture because of its reliance on oral communication, Heines said, but they can support and appreciate one another.
"I have a beautiful deaf world that I'm a part of," she said.
Medical facilities must provide deaf people with interpreters if they ask for them, but the law is not always enforced, said Rachel Mann, senior staff attorney with the Disability Rights Network of Pennsylvania.
About two years ago, she filed a lawsuit so that a Philadelphia man could join the Deaf Services Center's residential program. "Where he lived, he could not communicate with anybody," she said. That suit and another one paved the way for other Philadelphians and people from other area counties to use the Montgomery County program.
Some clients' behavior improved dramatically once they could communicate more easily, said Roland Turk, a vice president at Salisbury Behavioral Health Inc., which operates the center.
Before, he said, "the frustration level was so great when they were not able to express their wishes and desires that they acted out. Now they don't have to do that because they can communicate."
On a recent day, participants in the Services Center's day program watched a movie, played cards, and exercised to an aerobics video for the deaf.
Matthew Frey, 35, who has mental retardation and anger issues, said he had calmed down since moving into the apartments a year ago. When he lived at home and the Eagles lost, he said, "I would want to fight, and I know that's inappropriate, and I know my Dad would call the cops." Now, he said, he just thinks about some other team.
Ivy Sims, 37, who has schizoaffective disorder and depression, arrived at the center as a client six years ago. She is now a peer counselor, a paid employee who listens to other client and does some administrative work.
"I was interested in the job instead of being a member. I wanted to take on more of a leadership role," Sims said. She'd like to do the job a couple more years, then think about something else. "I haven't really decided what my future looks like," she said.