The federal (IDEA Federal Register) definition is: “Deaf-blindness means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational needs that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.”
There are many causes of deaf-blindness. Those that are present or occur around the time a child is born include prematurity, childbirth complications, and numerous congenital syndromes, many of which are quite rare, Deaf-blindness may also occur later in childhood or during adulthood due to causes such as meningitis, brain injury, or inherited conditions.
Many experts in the United States and other countries believe that the population of children who are deaf-blind has become more severely disabled over the past several decades. This may be due, in part, to advances in medical technology that have increased the survival rates for premature infants and children with very serious conditions, who are also deaf-blind.
However, deaf-blindness is not always associated with additional disabilities. For example, Usher Syndrome, an inherited condition that causes hearing loss and progressive vision loss, is not typically associated with other significant challenges.
Early testing of children’s eyes and ears can provide information to help treat problems that could lead to deaf- blindness.
Women who are considering trying to have a baby should have their immunity to rubella tested by their physician before becoming pregnant, as a rubella infection could lead to the unborn baby becoming deaf-blind.
It is also important that parents ensure that their children receive the MMR vaccine. If they catch rubella, not only will they be at risk of developing serious complications such as a lung infection (pneumonia), they could also spread the disease to a pregnant woman, putting her unborn baby at risk of deaf-blindness.
Characteristics of deaf-blindness
Although the term deaf-blind implies a complete absence of hearing and sight, in reality, it refers to children with varying degrees of vision and hearing losses. The type and severity differ from child to child. The key feature of deaf-blindness is that the combination of losses limits access to auditory and visual information.
More than 90% of children who are deaf-blind have one or more additional disabilities or health problems and some may be identified as having multiple disabilities rather than deaf-blindness. In these cases, the impact of combined hearing and vision loss may not be recognized or addressed.
Deaf-blind people communicate in many different ways determined by the nature of their condition, the age of onset, and what resources are available to them. For example, someone who grew up deaf and experienced vision loss later in life is likely to use a sign language (in a visually modified or tactual form). Others who grew up blind and later became deaf are more likely to use a tactile mode of their spoken/written language.
The lack of access to sound and visual information may result in severe psychosocial consequences, and impact on the ability to develop and maintain social contacts. These impacts vary with the influence of multiple factors: age, the mode of communication, being a part of the deaf culture or not, the nature of the sensory loss, the education level, the revenue, the social network, employment, personality, etc. Having few exchanges with others and becoming impervious to feedback due to difficulties in communication and perception, the person with deaf-blindness may loose perspective and their emotions may take over.
Implementation of Instructional Strategies
Training and support are available through federally funded technical assistance projects in each state. Early identification and intervention are critical. Appropriate early intervention services are important for the development of communication skills in infants who are deaf-blind.
National Deaf Blind Child Count data shows that although children who are deafblind are educated in a variety of settings most are educated separately from students who do not have disabilities.
Children with deaf-blindness require teaching methods that are different from those for children who have only hearing or vision loss. When both vision and hearing are affected, especially from birth or early in life, natural opportunities to learn and communicate can be severely limited.
Methods of communication include:
Multisensory methods have been used to help deaf-blind people enhance their communication skills. These can be taught to very young children with developmental delays (to help with pre-intentional communication), young people with learning difficulties, or older people, including those with dementia. One such process is Tacpac.
Educators working with deaf-blind students should facilitate interaction among students, adapt classroom activities and materials such as the computers, use grouping strategies to increase interaction and implement cooperative learning strategies.
Mar, Harvey H and Sall, Nancy. Social Relationships of Children and Adolescents with Deaf-Blindness. Final Report, 1996. Eric Document ED 395416
Effects of Deaf-Blindness on Adolescents
For young adults who are deaf-blind to develop self esteem and self determination, and to transition smoothly from school to work and
community environments, specific skills must be acquired. Michael Wehmeyer (1992) suggests that in order to promote self-determination the teaching environment needs to provide classroom control, not overregulation. Skills such as self-regulation and problem-solving should be taught, self-management procedures in the workplace must be encouraged, environments must be structured so that choice-making is supported, and instruction should be organized to provide adequate challenges and appropriate feedback.
Wehmeyer, M. L. (1992). Self-determination: Critical skills for outcome-oriented transition service: Steps in transition that leads to self-determination. Journal for Vocational SpecialNeeds Education, 15(1), 3-7.
Effects of Deafblindness on Adults
Despite the diversity in the deaf-blind community, they all have the same needs: to lead productive and independent lives with equal access to the community where they live and work the same as non-disabled people. Deaf-blind individuals are often stuck at home and isolated, leading to frustration and depression at not being able to communicate, access information, get out in the community, maintain employment and vote.
Employment opportunities are often limited for people who are deaf-blind for a number of reasons. One of the reasons may be that people who are deaf-blind often have limited life experiences that have not allowed them to interact with a wide range of jobs. Without specialized services for this population, barriers will continue to exist. Many individuals who are deaf-blind do not have the resources to self-advocate, nor have access to agencies.
Despite these profound challenges faced by deafblind people, many live full and active lives. For example, the famous deafblind writer, Helen Keller, won worldwide admiration for her books and campaigns for women's and workers' rights.
The nature and extent of deaf-blindness in children is often misunderstood, but a report, The National DeafBlind Child Count:1998–2005 in Review, shines a light on this unique group of children. The review, which summarizes 8 years of data, not only provides a count of the number of children, from birth through age 21, who have been identified as deaf-blind in each state, but also reports other details about this population. These include the classification of vision and hearing loss, and the types of additional disability.
The Helen Keller National Center for Deafblind Students and Adults is one of many on line resources created to assist deaf- blind children, adults and their families.
Technology is a necessary link toward information and communication access, independence, access to community resources and maintaining a competitive edge in today’s employment market. There is a need for affordable adaptations to technology with consideration to the needs of individuals who are deaf-blind as well as qualified trainers and services.