ONE ON ONE

DIALOGUE Interviews Nancy O'Donnell
of the Helen Keller National Center for Deaf-Blind Youths and Adults

If you saw the Dr. Phil show, "Silent Darkness," featuring the world's only known deaf-blind triplets, you may have wondered what the future holds for these little girls. If you missed the show, visit www.drphil.com/shows/show/853/ and read about the documentary based on the Dunn girls, "Through Your Eyes." There is a growing number of children and adults who are deaf-blind and we wanted to know more. We contacted Nancy O'Donnell, coordinator of special projects at the Helen Keller National Center for Deaf-Blind Youths and Adults, to gain insights into the services available to people who experience both vision and hearing loss and how they can adapt to a dual sensory impairment and learn to manage their lives. Here is what we learned.

The Helen Keller National Center for Deaf-Blind Youths and Adults is the only agency in the United States that provides vocational and rehabilitation services on a national basis exclusively to youths and adults who are deaf-blind. Authorized in 1967 by an Act of Congress, HKNC officially began operation on June 24, 1969 and moved to its current facility in beautiful Sands Point, New York in 1976. The mission of HKNC is to enable each person who is deaf-blind to live and work in the community of his or her choice.

HKNC services include a vocational training program and residence at the headquarters in the suburbs of New York City, and information, advocacy and referral through a national system of field services. The vocational training program incorporates areas such as work skills, communication, independent living, travel training, adaptive technology, audiology, low vision and creative arts. At the residential training program in New York, students may, for the first time in their lives, have the opportunity to meet and socialize with a group of peers who are also deaf-blind. This experience can have a profound, positive impact and forge lifelong friendships. When one hears the term "deaf-blind," many people think only of the world famous Helen Keller. Yet today, it is estimated that there are hundreds of thousands of people with combined vision and hearing loss, each of whom have unique skills, interests and communication abilities, depending on when they lost their vision and hearing.

HKNC is continually growing and expanding services. There is so much to be done, including better identification of those with combined vision and hearing loss; provision of information, support and services; research, including improvements in adaptive technology; interagency collaboration; personnel preparation; expanded residential options; and increased support for job placement and follow-up. In recent years, a community services program has been added, which provides training in independent living, communication, job development and orientation and mobility in the consumer's home and work setting. The adaptive technology department has grown from a small office to a multi-station computer lab with state-of-the-art equipment. The adaptive technology department opens the world to students by offering computer instruction in accessing e-mail, instant messaging, surfing the Internet, screen reading programs, and travel using GPS (global positioning systems) with refreshable braille output. Vocational services have evolved from an on-campus sheltered workshop model to competitive work sites in the community. To meet the needs of consumers who are deaf-blind with developmental disabilities, HKNC has established a customized program with a core group of staff in an on-campus apartment setting focusing on typical activities of adult life. These are just a few examples of the many innovative programs that are continually evolving at HKNC.

Depending on the training needs and communication methods of the individual who is deaf-blind, a local agency serving blind adults may be able to provide basic services to a deaf-blind consumer in the home community. Yet, staff at these agencies may be unfamiliar with the specific teaching strategies and communication methods necessary to work with consumers who are deaf-blind. HKNC offers professional seminars as well as customized, on-site in-service training to staff at these agencies who will be working with consumers who are deaf-blind.

HKNC has a long history of collaboration with agencies for the blind through a national network of affiliated agencies, interagency task forces and the National Coalition on Deafblindness, which provides information to policy makers regarding the needs of individuals who are deaf-blind. In addition, HKNC staff members belong to professional organizations and participate in conferences focusing on services for the blind. Many staff members started their careers in blindness and then made the transition to deaf-blindness.

HKNC receives its funding primarily through a line item in the federal budget, with additional funding coming from state agencies that sponsor individual consumers who are receiving training. HKNC also relies on grants and donations from the community.

By the end of this calendar year, HKNC will be opening its first permanent residential program for five adults who are deaf-blind in the local Port Washington community. Residential settings such as this one may incorporate adaptive technology that alerts residents to alarm clocks, doorbells and fire alarms. For those who use sign language as their main method of communication, new technology allows residents to call hearing friends and family members via a video phone. Communication with neighbors and local storekeepers can be facilitated in a variety of ways, including using pre-printed communication cards in large print or braille or a portable electronic device which allows deaf-blind people to type print messages to the sighted public, while reading their responses on a small, electronic refreshable braille display. Technology continues to rock our world!

For more information, please contact HKNC Information Services, 141 Middle Neck Road, Sands Point, NY 11050-1299; Phone: 516-944-8900 ext. 253; E-mail:  hkncinfo@hknc.org ; Web site:  www.hknc.org .


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