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Abstract:
Using a standardized assessment instrument, the authors compared 182 adults with congenital deaf-blindness and those with acquired deaf-blindness. They found that those with congenital deaf-blindness were more likely to have impairments in cognition, activities of daily living, and social interactions and were less likely to use speech for communication.
People who are deaf-blind differ in their degree of vision and hearing loss and in the age of onset of deaf-blindness, language development, communication mode, and level of independence. With this functional diversity among persons who are deaf-blind, it is important to identify the needs of this population at the individual level.
People who are deaf-blind can be classified into at least two groups: those who are congenitally deaf-blind, who experienced the onset of both hearing and visual impairment from birth to age 2 (Munroe, 2001), and those with acquired deafblindness, whose onset was later in life. Common causes of congenital deafblindness include intrauterine infections (like congenital rubella); congenital brain damage; and chromosomal abnormalities, such as CHARGE syndrome (Munroe, 2001; Watters, Owen, & Munroe, 2004). Acquired deaf-blindness can also be caused by genetically inherited disorders (such as Usher syndrome), as well as aging, postnatal or early childhood infections, and acquired brain injury (Munroe, 2001).
In Canada, approximately 55% to 70% of persons who are deaf-blind become deafblind after age 2 (Munroe, 2001; Watters et al., 2004). A survey by the Canadian Deafblind and Rubella Association resulted in the development of a National Volunteer Registry of Persons with Deafblindness in Canada (Munroe, 2001). Of the 1,725 individuals with deaf-blindness who were identified as eligible to participate in the registry, 777 (45.0%) completed the survey. The survey included questions related to the participants' demographic characteristics, modes of communication, diagnoses associated with vision and hearing loss, education and training, and the receipt of intervenor services for persons with congenital and acquired deaf-blindness. These two populations differed in many respects. A higher proportion of persons with acquired deaf-blindness lived independently, had a significant other, and used speech or writing or printing as modes of communication than did those with congenital deaf-blindness. The majority of individuals in the congenital group (69.6%) received at least 21 hours per week of intervenor services compared with only 12.3% among the acquired group.