By Matt Ellis
You could say Sam Aiken is a social guy. He talks to his brother three to four times a day. He has two daughters, five grandchildren and two great-grandchildren, and uses social media to chat with friends and share memories.
"I like to go on to Facebook to see photos and stay caught up," he said.
Aiken is deafblind, but because he has the right technology, it's pretty easy for him to stay in touch.
Aiken, and as many as 1 million other Americans like him who have combined vision and hearing loss, are exactly who the Federal Communications Commission had in mind when it created the National Deaf-Blind Equipment Distribution Program (NDBEDP), mandated by the 21st Century Communications and Video Accessibility Act. Supported by $10 million in annual federal funding, it provides for the local distribution of distance communications equipment to low-income individuals living with these disabilities.
Customized Communication Technology Training through iCanConnect.org
Recently, Aiken sat down to learn how to use his new ZoomText Magnifier—software from AI Squared that enlarges and enhances everything on the computer screen, making all applications easy to see and use, even with his very limited vision.
Sitting with him was Jerry Berrier, who works for Perkins in Watertown, Mass., and manages the NDBEDP for Massachusetts and Rhode Island. Berrier, who has been blind since birth, first met Aiken in 2004, when Berrier was working with the Massachusetts Commission for the Blind providing adaptive equipment and training people on how to use it.
"Having me set up your Zoom Text is like having a deaf guy set up your stereo," quipped Berrier.
NDBEDP aims to reach every American who has combined vision and hearing loss through partnerships with advocacy groups that work with individuals who are blind and deafblind in every U.S. state, the District of Columbia and in the territories of Puerto Rico and the U.S. Virgin Islands. Perkins, along with Helen Keller National Center For Deaf-Blind Youths and Adults, is leading the campaign to spread the word about NDBEDP, called iCanConnect.org.
Many Americans with combined vision and hearing loss lack educational, vocational and recreational opportunities. With passage of the Communications and Video Accessibility Act, those individuals with income that does not exceed 400 percent of the federal poverty guidelines will have free access to communications technology for help with schoolwork, job searches and social connections. A wide range of technology is available, from tablet computers and braille displays, to mobile devices and amplified phones, and can be distributed to people depending on which of those tools will provide the most benefit. Advocates agree the program will have a transformative impact on their lives.
"These kinds of tools tend to be expensive and for many people the money is the biggest stumbling block to having equipment that helps them stay connected," said Berrier.
Some Americans who will receive products through the program have lived with hearing and vision loss their whole lives; others have adjusted following illness or injury. Regardless of an individual's circumstances, the program promises the same goal: giving people the technology to be active members of their community.
"Although this program is focused on enabling individuals to engage in distance communication, it does require a lot of person-to-person contact," said Betsy McGinnity, director of the Training and Educational Resources Program at Perkins. "We are fortunate to have so many skilled state partners to work on the ground in their states."
McGinnity points out the program does more than just mail new adaptive equipment to people's homes.
"It also provides support for training, as much training as the individual needs. We've encountered people who have 12-year-old computers with dial-up access. They need the training and support to learn how to use the latest equipment," said McGinnity.
Berrier's role begins with installing or setting up the technology that will best assist the individual with whom he is working. His training varies greatly depending on the individual's abilities and level of comfort and familiarity with technology.
"I start out by putting the device in their hands. For the first session, all I'll do is talk to them about what the device can do. We take it one little step at a time," said Berrier. "When you introduce something new to a person who is deafblind it can be overwhelming. Most people who need this kind of equipment are not geared to learn how to use it on their own."
The tools and training available through NDBEDP will likely benefit many older Americans who still have some amount of hearing and/or vision, he said. In addition to the cost of the equipment, which can easily be unaffordable, a lack of exposure to the equipment could mean that many people who would benefit are simply unaware of the possibilities they could enjoy.
"Many people don't even know what they're missing," Berrier said. "Others may know about it, but can't imagine themselves ever learning how to use it. Thanks to NDBEDP and iCanConnect, we're going to be able to bridge that gap."
Decades ago, Aiken would never have guessed he would someday be a candidate for such a program. His life changed dramatically after a serious auto accident when he was 34 years old.
"My head went through the windshield. The doctors discovered glass in my neck and when they removed it, it had damaged the nerve that connects to my hearing and vision," he said.
The accident claimed Aiken's right eye. He has an artificial cornea in his left eye which allows for some vision, but he is bothered by sunlight and can only see a distance of about five feet. He still has some hearing in both ears, thanks to cochlear implants.
Yet, access to the right kind of technology has allowed Aiken to stay connected with friends and family, as well as help others. For friends and acquaintances who have low vision, he creates large print versions of letters, emails and other documents, thanks to the amplified telephone, ZoomText keyboard and software he received through NDBEDP.
Today, Aiken is grateful to Berrier for his training and to NDBEDP for the technology that will continue to ensure his independence and productivity into the future.
"I love this," said Aiken, navigating the screen as Berrier fiddled with wires. "I can see the screen almost perfect."
The keyboard and associated software provide a fully integrated magnification and screen reading program that enlarges, enhances and reads aloud everything on the computer monitor. It allows the user to listen to text while doing other work, turns documents into audio files and highlights text so the user can hear and see what the cursor touches.
"The white-on-black color set-up helps me see almost perfect," said Aiken while he was navigating the Boston Channel website. He was particularly interested in the latest news from Foxboro about the New England Patriots.
Hundreds of miles from Aiken's home in Peabody, Mass., Kevin Parker is preparing to meet his trainer so he can begin using a specialized laptop and iPad to accommodate his vision loss. Parker suffers from Usher syndrome which is causing a gradual loss of his eyesight. He is one of the first people in Ohio to receive equipment through NDBEDP.
"Peripherally, my vision is almost gone," said Parker. "I can still see through the centerof my eyes but the doctors tell me it will continue to get worse." Usher syndrome has affected Parker's hearing since birth. He is tone deaf and struggles to hear what most people take for granted.
Parker lives with a roommate in Columbus. He is 28 and left his job as an operating room assistant at a local hospital; he was forced to leave because he could no longer see well enough to do it safely.
"It's hard to see if the lights are dim. That could be a problem for me working in a hospital because the lighting is not always bright," he said.
Parker was referred to Columbus Speech and Hearing Center for job training and support. At the time he didn't even know the Center was overseeing Ohio's outreach for NDBEDP.
"Kevin is young and has so much potential," said Jennifer Smith-Dudash, director of the Comprehensive Program for the Deaf at Columbus Speech and Hearing Center. "He didn't realize how poor his vision was; he couldn't really see the cursor on the screen. So we thought this program was perfect for him. Getting Kevin a laptop with assistive technology will give him the ability to take online college courses and receive support from our Vocational Rehabilitation Program."
Like Aiken, Parker is a social person. He is active in his church and is close to many of the people in his congregation.
"When I'm home I like to be on the computer doing email and getting on Facebook. It's one way I stay connected with my family and friends," he said.
Parker is also hoping to get a new laptop to take advantage of the most up-to-date Zoom-Text software and an illuminated keyboard.
Because he doesn't know how extensive his blindness could become, Parker knows he will continually have to adjust to a new degree of vision loss.
"I don't want to think about it," he said. "Sometimes I don't know how to adjust. People are telling me to learn sign language but if I can't see, it won't matter."
Parker is counting on his new equipment to help him find a new job and expand his social circle. Most of Parker's friends have regular sight and vision so he doesn't want his condition to impair his ability to connect with new people, and perhaps even start a family of his own.
"I want to meet the right woman and get married one day," he said.