DB-link: National Information Clearinghouse on Children Who Are Deaf-Blind. (Better Speech and Hearing Month)(Organizational Spotlight).

ELIZABETH is the mother of a five-year-old with CHARGE Syndrome. (CHARGE is a complex syndrome involving multiple anomalies of the eyes, heart, throat, genitals and ears, also affecting growth and development.) She needs information to share with her physician about the effects in behavior of combined hearing and vision loss.

ELEANOR has just learned that her six-month-old daughter, who is deaf, also has significant visual impairments. She wants to understand more about using touch to connect with her baby.

STEVEN is a special education teacher. In two weeks, an eight-year-old boy who is deaf and blind will be enrolled in his third grade class. He has never worked with a child who has deaf-blindness before. He is anxious to learn as much as he can, as well as communication and teaching strategies for this student.

JENNIFER is a graduate student of a master's program in severe disabilities. She is writing a research paper on the impact of learning in individuals who are deaf-blind. She needs help locating what has been written on this subject.

DB-LINK, The National Information Clearinghouse On Children Who Are Deaf-Blind responds to questions such as these Monday through Friday; via telephone, e-mail and the internet. Individuals across the country have access to the world's most comprehensive and dynamic collection of information about deaf-blindness. For persons with disabilities, information is an essential tool when making choices. DB-LINK services and products make it possible for families, teachers and service providers to find resources that will make a difference for the deaf-blind children in their lives.

Why a clearinghouse for deaf-blindness?

The Office of Special Education Programs (OSEP) has funded DB-LINK since 1992. DB-LINK is the only federally funded clearinghouse dedicated to a specific disability. That singularity of focus is warranted by the unique and exceptional circumstances that arise for any child when hearing and vision loss occurs in combination.

Deaf-blindness may seem to refer to a total loss of sight and hearing. While for some children that will be true, but most children who are deaf-blind have some usable vision or hearing. The combined loss, however, creates intense communication and developmental needs that cannot be met by strategies for children who are only blind/visually impaired or deaf/hearing impaired. This population of children is small in number and very diverse in the nature of their disabilities. Communication is their single most important need. For information to be useful, it must be tailored to match the immediate needs of a particular child.

Deaf-blindness is a low-incidence disability. The number of children identified across the country is just under 11,000. This means that only a few school districts or teachers will ever serve a student who is deaf-blind. In most instances, they will find themselves responsible for the education of students for whom they have little or no professional expertise.

History

With the belief that information could improve the education and quality of life for deaf-blind children, the federal government made funds available for the clearinghouse. DB-LINK was formed as a consortium project and is a partnership of three agencies: Teaching Research Division of Western Oregon University, Perkins School for the Blind Massachusetts and the Helen Keller National Center in New York. DB-LINK's task has been to organize the information about deaf-blindness, insure that families and professionals are aware of our resources and make information widely available and accessible.

Before DB-LINK, it was difficult to locate in-depth information about deaf-blindness. It was not a topic included in the disability information found in most education programs or libraries. The numbers of professionals and experts in the field are few and practices and research had no network for distribution. Often, those closest to a child--parents and teachers--were the farthest removed from the kinds of information that could make a difference.

DB-LINK is the most recent addition to a 30-year history of federal support for deaf-blind children. It began as a result of the devastating effects of the international rubella epidemic in 1964 and 1965. That epidemic left approximately 2,500 children across the country with dual sensory losses and in need of extensive special education services and programs. Today, OSEP also funds state deaf-blind projects and a national deaf-blind technical assistance project.

Over the years, the population of deaf-blind children has grown and changed. The babies of the rubella epidemic have grown up and moved into adult services. New medical technologies and breakthroughs in neonatal intensive care have improved the mortality rates of infants born with significant disabilities. Diagnostic technologies and research are leading to earlier identification and treatment of children with syndromes that put them at risk for combined hearing and vision losses.

The educational environment has also changed. Federal laws that insure children with disabilities the right to a full and appropriate education have moved deaf-blind children out of institutions and state schools, onto the school bus and into the classroom with their non-disabled peers. The educational strategies and techniques developed over the last 30 years are needed now by new generations of families and teachers in communities large and small across the country.

What services does DB-LINK provide?

For persons with limited hearing and vision, their hands become a primary sense organ. At DB-LINK we like to think of ourselves as a "high touch--hands on" service project. Six information specialists are available by phone and email to respond to inquiries five days a week. Our staff uses our extensive library of nearly 8,000 books, articles, curricula and videos to answer requests. Our responses include a tailored packet of information for each of our consumers. This can be a series of articles, a list of consultants or a literature review on recommended practices. For parents, DB-LINK is often their first contact with the broader deaf-blind community. Teachers call with questions on assessment and we are often asked to prepare information for an educational team or put together items for training teachers. Outreach materials specific to new teachers and graduate students in special education have been developed.

Each year, DB-LINK receives nearly 2,000 requests via phone and email and logs, on average, 146,000 visits to our web site. While we believe in the value and depth of our library, we also value our connections to human resources. We partner directly with two groups of consumers: the National Family Association for Deaf-Blind (NFADB) and the American Association of the Deaf-Blind (AADB). NFADB is a national organization of families who come together to support, encourage and advocate for their children. Many parents have never met another family with a child who is deaf-blind. With their strong network of regional directors, DB-LINK is able to work with NFADB parents to connect families to share experiences and support. We also support NFADB regional directors in their efforts to build and share information within their states. AADB is the national organization of deaf-blind adults and DB-LINK has partnered with them to develop a national mentoring project to train deaf-blind adults to be effective mentors to deaf-blind youth.

De-LINK Products

We have developed a library of ten fact sheets covering various aspects of deaf-blindness including communication, early intervention, orientation and mobility. These are continually requested and used by parents, teachers, trainers and staff-to-state deaf-blind projects. They are available in hard copy, alternate formats, full text from our website and on CD-ROM. We have partnered to produce two additional products, one on sexuality education and another on creativity. We participate in the publication of Deaf-Blind Perspectives. Our web site is the gateway to an extensive array of full text documents, selected topics, state contacts and resources as well as the clearinghouse databases. All of DB-LINK's products and services are free of charge.

Together, our services, products and partnerships help to create a network that extends the impact of information and is transforming the field of deaf-blindness. DB-LINK is now part of a dynamic community that is developing information and increasing awareness about deaf-blindness throughout the world. Please contact us with your questions or for any of our products. We look forward to serving you.

RELATED ARTICLE: Profiles--children who are deaf-blind.

LUCIA, a four-year-old, was diagnosed with CHARGE syndrome shortly after birth. He has overcome a multitude of health issues and currently attends preschool. He has colobomas that affect his central vision so that he often tilts his head to get a better view. He communicates primarily using a combination of signs and pictures. He also wears hearing aids that help him to understand some spoken language. Although frequent illness and hospitalizations caused him to have a slow start, Lucia is catching up and is, according to his Dad, "always in the thick of things" at home and at school.

AMBER is trying to decide whether to go straight to college next year or work for a year and save up some money. She is graduating in June, at the top-quarter of her class from the State School for the Deaf in. Amber, whose primary language is American Sign Language (ASL), has Usher Syndrome. Currently, Amber still has good central vision but her field of vision is narrow and she has very little vision at night. Dealing with progressive vision loss is a struggle for Amber but she has managed to make adjustments and use accommodations when necessary. For example, she uses tactile sign in darker areas now and has learned some mobility techniques.

ERIC was born a few months before his parents expected him. He weighed less than two pounds and required a lot of medical support to survive those first few months. It is hard to know exactly what Eric can hear or see. Sometimes he seems to respond to his Mom's voice and at other times, he does not. Eric, who has cortical visual impairment, received a lot of early intervention services and has learned to use the vision he has. At age eleven, Eric attends his neighborhood school with the help of a one-to-one teacher's assistant. Eric communicates using gestures and objects. He uses an object calendar and if given a choice, he would always choose the disk that represents computer class. He manages a touch screen very well.

KATIE is a middle school student with an engaging smile. As is true for many children who are deaf-blind, the doctors don't know what caused Katie's hearing and vision loss. From her wheelchair, Katie uses her right arm to make choices from the objects on a tray in front of her. Her teachers and fellow classmates use a combination of signs, voice and objects to communicate with her.

Gail Leslie is the DB-LINK Project Coordinator.

To contact DB-LINK, call 800.438.9376 (voice) or 800.854.7013 (TTY), send email to [e-mail] or visit their web site at http://www.tr.wou.edu/dblink.