Imperiled state program a lifeline for deaf and blind
Ona Stewart uses her hands to see and hear, and aides say she has a sense of touch so subtle she can read someone’s mood by the tension of their grip.
The 52-year-old, who makes pottery and weaves for a living, takes pride in her independence, and though deaf and blind, manages to live on her own in Cambridge, cook her meals, and navigate nearby streets and subways.
But because she does not have family nearby, she relies on a decade-old state program that provides aides who communicate with her through tactile sign language. They also help her shop for groceries, attend community meetings, run errands, and live as full a life as possible.
That may end soon.
Governor Deval Patrick’s proposed budget for fiscal 2012 eliminates the $450,000 the state spends annually to manage the DeafBlind Community Access Network, which provides up to 16 hours of assistance each month to Stewart and 63 other state residents who have similar disabilities.
“If they really do this, I would be devastated,’’ she said through an interpreter on a recent afternoon in the Allston office where the program is run. “I would be so scared. I would no longer be able to live independently. I would be lost.’’
Administration officials said they must make undesirable cuts this year as they try to close a projected $1.2 billion budget gap. The governor’s proposed $30.5 billion budget for fiscal 2012 would cut $570 million in state spending — the largest year-to-year cuts in 20 years — eliminating two state prisons, 900 government jobs, and space to treat 160 mentally ill patients.
“In the face of unprecedented fiscal challenges, we’ve been forced to make some very difficult budget decisions that no agency wants to be faced with,’’ said Paulette Song, a spokeswoman for the state’s Executive Office of Health and Human Services. “We are working hard to mitigate the impact of budget constraints on the deafblind community, and to ensure that direct services to the most vulnerable members of the community are preserved.’’
But advocates for state residents who are both deaf and blind say the cuts to such a vital program go too far and the consequences would be intolerable.
They note the program reaches fewer than one-fifth of the 510 adults who are registered as deaf and blind with the state Commission for the Blind. They say there are about 42,000 people in the country who are deaf and blind.
Without the program, “a deafblind person faces dangerous risks to safety, including increased opportunities for abuse, increased health problems that are allowed to go unchecked, resulting in possible hospitalizations due to failing health, mental health problems, and institutionalizations,’’ said Sharon L. Applegate, executive director of Deaf, Inc., the Allston organization that oversees the program.
She added: “People will lose their independence and their safety, and the resulting costs could be devastating.’’
Among those worried about losing services is Elaine Ducharme, director of the Access Network. The 54-year-old, whom aides describe as a “human computer’’ with a photographic memory and such a sharp sense of smell that she knows who was in a room after they left, believes the program’s elimination will make it challenging for her and others to accomplish simple tasks such as buying milk.
Ducharme, like many others in her program, wants to be as independent as possible, and there is much she can and has done on her own. Among other feats, she has a master’s degree in human services and can manipulate spreadsheets, read and write e-mails, and make full use of a computer by feeling a strip of metal pins beside her keyboard that quickly translate what is on the screen into braille.
But the program’s 33 interpreters and service providers remain vital to her and the others. Without their help, she says, it would be hard to do her job and hard to live. They drive her to meetings, monitor her exercise, and help her attend to others in her program.
“If these cuts occur, deafblind people will be left with nothing,’’ Ducharme said through an interpreter. “We’re just begging the state to reconsider. The cuts would have a terrible impact.’’
Some of the trained service providers such as Heidi Cote, each of whom earn an average of $15 an hour, said they would volunteer as much as possible if the program is canceled. She and other providers have grown close to those they serve, accompanying them to everything from weddings to doctor appointments.
But Cote, who like the other providers is trained in tactile sign language, said she has to earn a living. “I just wouldn’t be able to spend the time with them that I do now,’’ said Cote, who like nearly half of the other service providers is deaf. “It pains me to think what it would be like for them without this program.’’
Those in the network and their advocates hope to find support on Beacon Hill.
Representative Jay Kaufman, a Lexington Democrat who cochairs the Joint Committee on Revenue and whose wife works as a sign language interpreter, says he will lobby for the program, and at worst, argue that its budget be merely reduced.
“The program really has allowed them to play a role in the community that they would not otherwise be able to play,’’ Kaufman said. “To take that away, it would be cruel and unusual punishment.’’
He added: “To go from serving 64 people to zero doesn’t seem to be an equitable distribution of the responsibility for cuts. To cut this entirely would be balancing the budget on the backs of highly vulnerable people.’’
To underscore their concern, three deafblind members of the network testified through interpreters yesterday at a budget hearing before the Joint Ways and Means Committee.
Janet Marcous, 63, who helped establish the program in 2001, said she needs the program more than ever.
“It’s strange how people think that if a particular service is offered, somehow the need disappears after a while,’’ she wrote in an e-mail before the hearing.
She has relied on the network to attend wakes, vote, swim, and much more.
The program has “become an intricately woven aspect of my life that helps me to be a part of my community,’’ she wrote.
She worries she will become isolated, a major problem for those who are deaf and blind.
“Why take it away from us when it has done such a great service?’’ she said. “To eliminate [the program] would be similar to eliminating our lifeline. This would be most inhumane.’’
David Abel can be reached at firstname.lastname@example.org.