I am happy to announce the release of the latest transition product! As many of you know, the transition institute has been a highly collaborative venture spanning eleven years and fifteen states. This product, a video compilation of youth, family and the DB network’s perspectives regarding good transition planning, is a must see!
The boxed copies will also be available shortly for you to use in any capacity you think would be of benefit to your stakeholders
We are excited to share this with you and welcome your feedback on its utility.
National Center on Deaf-Blindness / Helen Keller National Center
141 Middleneck Road Sandspoint L.I 11050
516 393 -7596
Although the term “deaf-blind” may at first seem absolute, in reality people who are deaf-blind experience a broad range of perceptions. Someone may be completely blind but only partially deaf, or have some vision early in life, no hearing at all, and gradually lose that vision. Only a very few people described as “deaf-blind” are profoundly deaf and totally blind.
It is difficult for sighted, hearing people to imagine the world of a person who is completely deaf-blind. Their experience is limited to that which they can touch, which is why developing options for communication and mobility become an all-consuming goal. If the person has some vision and/or hearing, their world expands somewhat, but adapting to the condition is still a monumental challenge.
Communication and mobility are the two areas most affected by a loss of sight and hearing. A person who cannot hear or see is essentially alone unless someone is in actual physical contact, which adds to a feeling of isolation and loneliness. Many deaf-blind children, as many as 80 percent, have additional disabling conditions. These may include mental retardation, physical handicaps, social/emotional issues and communication delay.
Who is Deaf-Blind?
Some children called deaf-blind have enough hearing to recognize familiar sounds, including recognizing some speech and perhaps even developing some speech. Other children who are deaf-blind may have enough vision to be able to read large print, recognize familiar people, see sign language and move around in their environment.
It has been estimated that 40,000 people in the United States are deaf-blind. Of that number, 10-11,000 are children. While not all people who are deaf-blind are born that way, estimates indicate that deaf-blindness occurs in three of 100,000 births.
Legally, children are called “deaf-blind” if they have “such severe communication and other developmental and learning needs that the persons cannot be appropriately educated in special education programs solely for children and youth with hearing impairments, visual impairments or severe disabilities, without supplementary assistance to address their educational needs due to these dual, concurrent disabilities” (1990, IDEA, Sec. 622).
Causes of Deaf-Blindness
There are many causes of deaf-blindness. Some of the more common ones are rubella, CHARGE Syndrome, Usher’s Syndrome, genetic disorders, accident and illness. Maternal rubella causes loss of hearing, loss of sight, and sometimes heart defects as well. CHARGE is a collection of symptoms including coloboma, or lesions on the eye which impair vision, heart defects, atresia, which is complications of the respiratory system, retarded growth, genital hypoplasia or genital abnormalities in male children, and ear anomalies or deafness. The cause of CHARGE Syndrome is not known.
Usher’s Syndrome is a genetic problem which accounts for about 50 percent of all people diagnosed as deaf-blind. One in 20,000 people are born with it. The first symptom of Usher’s Syndrome to be diagnosed is usually a problem with hearing. Night blindness can be diagnosed early, but most symptoms of vision loss are not noticed until late childhood or adolescence.
Down’s Syndrome can cause deaf-blindness, as can fetal alcohol syndrome, hydrocephaly, maternal drug abuse, premature birth, AIDS, herpes, syphilis and toxoplasmosis. Some causes occurring after birth include: asphyxia (loss of oxygen), encephalitis, head injury or trauma, meningitis and stroke.
How deaf-blindness affects a child’s development depends on several critical factors, according to the Arizona Deafblind Project. These include the age of onset, the degree and type of vision and hearing loss, the stability of each sensory loss, and the educational intervention provided.
What we see and what we hear are our primary methods of learning about the world. Much of what children learn is called “incidental learning;” parents don’t tell their child that the sky is blue or that birds sing, because sighted and hearing children just absorb information like this through their senses of hearing and sight. It is estimated that up to 80 percent of what we learn is learned visually. Since hearing is the basis of the communication system that most people use, combined sensory loss can have serious consequences for a child’s development.
Deaf-blindness affects a child’s language development, motor development, cognitive development and emotional and social development. Teaching parents and others how to overcome these challenges is the primary goal of early intervention.
Early intervention often focuses on communication needs first. Children who are deaf-blind can’t communicate like other children, and parents need to accept this and adapt to it. Including the child in the family might mean learning sign language or learning to be more descriptive in communication. A second issue for parents of children who are deaf-blind is mobility. Parents must learn how to make the home environment safe for a low-vision or blind child, and how to encourage the child’s motor development.
Early intervention is available for families no matter where they live. Services may include transportation to and from special facilities, home visits from professionals trained to teach families how to adapt, and more. Parent support groups are often available, and give parents an appropriate and often much-needed outlet for their feelings of frustration and someone who can share their triumphs.
For anyone who is deaf-blind, the primary challenge is to “make sense of the world using the limited information available to him or her,” explains Barbara Miles in an article on the DB-Link site. “If the person’s sensory disabilities are great, and if people in the environment have not made an effort to order the world for him or her in a way that makes it easier to understand, this challenge may be overwhelming.” Miles points out that behavioral and emotional problems are not uncommon for people who are deaf-blind, and are a normal response to the person’s inability to communicate and understand the world.
For people who are deaf-blind, the world can seem to be an unpredictable or even a threatening place. Many cues about what is happening around us are either visual or audible — the sound of a footstep signaling the approach of someone else, or the sight of a flashing yellow light to indicate danger. Family and friends who surround people who are deaf-blind must be aware of this and knowledgeable about what to do to make the world more predictable and safe.
Assistive devices can help. They are available in categories ranging from aids to daily living to play and leisure or adapted toys, alarm and emergency call devices to cognitive and learning aids, adapted computers and telephones, even ideas for home modifications.
Depending on the degree of sensory loss, devices designed to help people who are deaf may be useful, such as a TDD or telecommunications device for the deaf. This equipment lets people who are deaf make telephone calls by typing in text instead of speaking.
A similar device for people who are deaf-blind is the TeleBraille. Instead of the text appearing in a screen on the machine, the text appears in Braille, the raised-dot alphabet system. The TeleBraille can also be used for face-to-face communications between a person who is deaf-blind and a sighted person.
For people with some sight, a device called a Visual Ring signaler can be hooked up to the telephone and a lamp, which will blink when the telephone rings. A similar device can be connected to the doorbell, or to a baby monitor to alert parents when a baby is crying.
Another device might shake the bed when it’s time to get up, instead of ringing an audible alarm. There are cordless devices which connect to a doorbell and are carried in the deaf-blind person’s pocket — they vibrate when someone’s at the door. Another device can detect loud noises approaching and vibrate to alert the person who is deaf-blind; this can be used to help cross a street, for example.
People who are deaf-blind may use amplification devices or hearing aids if they are not profoundly deaf. Hearing aid technology has made remarkable advances over the past quarter-century. Now, some hearing aids sample sound fifty times per second and have the ability to make loud sounds soft and soft sounds louder. Some hearing aids can produce fidelity as good, if not better, than expensive stereo systems.
Cochlear implants may be a choice for some people who are deaf-blind. This system requires surgery to implant a device which is then connected to a receiver outside the ear. It allows people to experience the sensation of sound, but does not restore normal hearing. The person can hear environmental sounds better, and hear rhythms and patterns of speech and use speech reading or lip reading more effectively.
The Massachusetts Eye and Ear Infirmary at Harvard Medical School is currently working on a Retinal Implant Project, trying to develop a silicon chip eye implant that can restore vision for patients suffering from Retinitis Pigmentosa (RP) and Macular Degeneration. Retinitis Pigmentosa and age-related Macular Degeneration are the leading causes of blindness throughout the world.
Braille typewriters, Braille notepads, computer programs which use voice synthesizers to read the text on the screen and screen enlarging software are all adaptive devices for people with visual disabilities who use computers.
Guide dogs can be trained to recognize sounds such as a door bell, a telephone ringing, a smoke alarm, a baby crying, or other noises. Guide dogs can also help with mobility. Other people who are deaf-blind may choose to have a companion, or a Support Service Provider, who acts as their eyes and ears, helping them to live more independently.
Adaptive strategies to help people learn to wash and sort clothes, cook and otherwise live independently are taught at rehabilitation centers everywhere.
Learning to express our thoughts and feelings is the most elementary part of joining the human community. Learning language without hearing is the most difficult challenge people who are deaf-blind will face, but it is also their greatest opportunity: Language will open the world to them.
Families, teachers and caregivers are responsible for giving children access to language, and through that language, the world. Barbara Miles, in a past article on the DB-Link site, says, “…the people in the environment of children or adults who are deaf-blind must seek to include them — moment-by-moment — in the flow of life and in the physical environments that surround them. If they do not, the child will be isolated and will not have the opportunity to grow and to learn. If they do, the child will be afforded the opportunity to develop to his or her fullest potential.”
Involving people in their environment requires the use of some language, whether it is manual or oral. There are a number of different communication systems used by people who are deaf-blind. They include touch cues, gestures, American Sign Language (ASL), fingerspelling, Braille writing or reading, large print writing or reading, the Tadoma method of speech reading, or lip-reading speech.
People who are culturally Deaf and have sufficient sight can use ASL as long as they are fairly close to the person signing. A variation of this for people who have tunnel vision, or a narrow field of vision, is visual frame signing. The hands are kept near the upper body and face so they can be seen and understood. People who have no vision can use tactile sign language by placing their hands over the hands of the person signing and feeling the hand shape, position and movement.
Words can be spelled out letter by letter and felt by the person who is deaf-blind. This method is based on English and has a different grammar and syntax structure than ASL. Letters can also be traced onto the palm of the deaf-blind person’s hand, using block capitals and as few strokes as possible to make it easier to feel.
Some people who are deaf-blind have enough hearing to understand speech, and/or may be able to speak clearly enough to be understood. Lipreading, speechreading and cued speech may also be communication options if the person who is deaf-blind has sufficient vision.
According to Hugh Sasse, writing for A Deafblindness Resource Site, “Tadoma is tactile lipreading (or tactile speechreading). It is named after the first two children to whom it was taught: Winthrop ‘Tad’ Chapman and Oma Simpson. The person reading the speech places their thumb on the speaker’s lips and their fingers along the jaw line, touching the speaker’s cheek and throat. They therefore pick up the vibrations of speech as well as the lip patterns.”
Another critical issue for people who are deaf-blind is learning to get around the home and the community as independently as possible. The lack of vision makes it difficult to move around without getting hurt; the prospect of encountering a dangerous situation can also decrease motivation to move around.
Many adults who are deaf-blind can lead interesting and independent or semi-independent lives. The foundation for these achievements is laid early in childhood, and Orientation and Mobility training plays a large part.
Parents and teachers need to work hard to create spaces which are safe and motivating for children who are deaf-blind. If children have other physical problems which limit mobility, these need to be taken into account as well. A team of physical and occupational therapists, orientation and mobility specialists and healthcare professionals can all work with parents and teachers to make a child’s home and classroom environments accessible and motivating.
Older children or adults who have lost vision can also benefit from the advice and training of Orientation and Mobility professionals. While these specialists often teach people to use a cane, they can also help their students gain the confidence to use public transportation, navigate busy streets and even adapt their workplace to make it safer and more predictable.
Helen Keller, perhaps the world’s most famous individual who was deaf-blind, said, “Blindness separates a person from things, but deafness separates him from people.”
Connecting a child who is deaf-blind with the world is an enormous undertaking. Children who are deaf-blind often have limited means of communicating; their mobility may also be impaired, and they may face a number of other educational challenges. Because of this, their educational plan must be carefully designed to address their unique challenges and their areas of interest.
Educators and parents must conduct regular assessments to determine which teaching strategies are working. If a child’s intelligence is underestimated, it has the potential to further isolate the child with many undesirable side effects. Professionals who specialize in educating children with a combined sensory deficit are a crucial resource for parents. Working with a team of knowledgeable and experienced educators will help parents maximize their child’s potential for learning, and increase the child’s connection with the surrounding world.
An education may start with basic self-help training, such as dressing and feeding. Leisure skills and effective work habits are important components of an educational program as well. Some people who are deaf-blind may never achieve the level of independence that would allow them to work outside the home, so learning what to do in their free time can have a great impact on their quality of life.
Throughout, educators should emphasize the continuing growth of communication skills, including written and expressive language, if appropriate. Parents need to adjust their expectations for their children, understanding that for many children who are deaf-blind, learning how to ask for help is as important an achievement as learning to drive might be for another child.
When school-based education is coming to an end, transition and rehabilitation services become essential. As an adult, the person who is deaf-blind must be encouraged to build a life which is as independent as possible. Help with housing, transportation, job skills, healthcare needs including mental health, Orientation and Mobility must all be coordinated with as much input from the client as possible.
Barbara Miles, from the DB-Link site, says, “…the individual’s own goals, directions, interests, and abilities must guide the planning at every step of the way. Skilled interpreters, family members and friends who know the person well can help the adult who is deaf-blind have the most important voice in planning his or her own future.”
There are many challenges facing people who are deaf-blind, and the people who care for them. But the challenges can be met successfully, and a high quality of life can be enjoyed.
Barbara Miles points out that people who are deaf-blind and have achieved their goals have many things in common:
“First, they have each, in their own way, come to accept the absence of sight and hearing as a life situation which gives them a unique and valuable experience of the world…. Second, they have had educational experiences which have helped them maximize their abilities to communicate and to function productively. Finally, these happy, involved persons who are deaf-blind live in families, communities, or social groups that have an attitude of welcoming acceptance. They have friends, relatives, and co-workers who value their presence as individuals with significant contributions to make to the world around them.”
Warning Signs for Deaf-Blindness
Sometimes a child is diagnosed from birth with conditions which predispose him or her to deaf-blindness. If you are concerned that your child is developmentally delayed, talk to your pediatrician or family doctor immediately. Remember, the earlier your child receives specialized attention, the more likely it is that she or he will be able to meet the challenges ahead.
Arizona DB Project. An Internet resource available at: http://www.azdb.org (last updated July 25, 1999).
DB-Link. An Internet resource available at: http://nationaldb.org/
Gallagher, James. A-Z to Deafblindness . An Internet resource available athttp://www.deafblind.com (last updated July 15, 1999).
Miles, Barbara. “Overview on Deafblindness” An Internet article available on DB-Link athttp://nationaldb.org/documents/products/Overview.pdf (Last accessed on July 29, 1999).