Meeting the needs of late-deafened adults.

Among service providers and people with hearing impairments there are disputes over the appropriateness of terminology and the lines of demarcation for those populations who are "deaf," "Deaf," "hard of hearing," "late-deafened," and "oral deaf."(1) Nonetheless, all of these populations would probably agree that deafness does not mean the complete absence of sound any more than blindness implies the total absence of vision. Many deaf people can hear some sounds either with or without amplification devices. For the purpose of this paper, then, the term "deafness" refers to the inability to understand conversational speech through the auditory channel alone, regardless of amplification mode. To clarify further, the term "late-deafness" refers to deafness that occurred after the normal acquisition and development of speech and language or, generally speaking, at adolescence or beyond.

In the current vernacular, audiologists refer to late-deafness as adventitious(2) deafness. In functional terms, late-deafened adults can no longer understand speech without visual clues and cannot rely on audition alone as a means of receptive communication. For example, they cannot understand speech through the standard telephone. Instead, they depend on visual or tactile modes of communication to replace or supplement audition, such as speech reading, text reading, sign language interpreting, or tactile cuing.

Late-deafness can occur suddenly or progressively over a period of years. Most commonly, it is the result of head injury, ototoxic medications, bilateral vestibular schwannomas (NF2), noise exposure, Meniere's syndrome, cochlear otosclerosis, or presbycusis.(3) Regardless of etiology, late-deafened adults share the experience of becoming deaf after once having normal hearing.

Incidence and Prevalence

The late-deafened population in the United States is surprisingly large. Schein and Delk (1974) conducted the most recent National Census of the Deaf Population in 1972. When deafness was defined by self-report as "the inability to hear and understand speech" and the age of onset was considered, the census revealed that slightly more than two-thirds (66 percent) of the respondents who reported being unable to hear or understand speech fell into the postvocational category (i.e., age of onset after 19 years). Also, when deafness was considered a "significant bilateral hearing loss" (i.e., a hearing loss that is present in both ears and in which the better ear has difficulty hearing and understanding speech), the census revealed much higher prevalence rates for those in the 25 and older categories than in those under the age of 17 (Table 1).

Table 1 Prevalence and Prevalence Rates for Significant, Bilateral Impairment by Age and Sex: United States, 1971.

Sex/Age        Number      Rate per
                           100,000
Both Sexes    6,549,643    3,237
Under 6          56,038     262
6 to 16         384,557     852
17 to 24        235,121    862
25 to 44        642,988    1,356
45 to 64      1,870,356    4,478
65 and over   3,360,583   17,368
Females       2,706,124    2,583
Under 6          23,771     227
6 to 16         155,738     701
17 to 24         81,923     568
25 to 44        243,403     990
45 to 64        610,741    2,783
65 and over   1,590,818   14,257
Males         3,843,519    3,938
Under 6          32,267     295
6 to 16         228,819     997
17 to 24        153,198    1,191
25 to 44        399,585    1,749
45 to 64      1,259,885    6,535
65 and over   1,769,765   21,606

Table 1. Reprinted from Schein, J. D., and Delk, M. T., Jr. (1974). The Deaf Population of the United States (p. 29). Sllver Spring. MD: National Association of the Deaf.

Ries (1982, 1992), who published the most definitive statement currently available on the epidemiology of hearing ability and its sociodemographic correlates in the United States, dramatically illustrated the overwhelming association between increasing age and increasing prevalence of hearing loss (Figure 1).

[CHART OMITTED]

Figure 1 charts data from the National Health Institute Survey in which serious hearing loss was defined as "at best, can hear shouted speech." An age chart of normally hearing people resembles a pyramid whereas that of people with hearing loss resembles an inverted pyramid, the shape differing only in degree for those with mild to moderate hearing loss and those with a serious hearing loss.

When age of onset of deafness was considered, Ries (1992) demonstrated that of those persons who reported no measurable hearing or at best can hear words shouted in the ear, 73.4 percent reported age of onset of hearing loss after 19 years. Thus, among the deaf population in the United States, late-deafened adults appear to be a distinct majority. Despite this evidence, the literature on adult-onset deafness is scant as almost all the funding focuses on congenitally and prevocationally deaf habilitation programs. Moreover, a significant proportion of research dollars for deafness goes toward psychoacoustic and otophysiological investigations of the auditory mechanism. Based on the available data, it appears that monies would be more wisely spent developing much needed training and rehabilitation programs that would meet the needs of the late-deafened population, rather than exclusively chasing after the elusive cure.

Psychosocial Ramifications

People who become deaf as adults face substantially different challenges than people who grow up deaf. A person who becomes deaf must relearn adaptation activities as responding to a knock at the door, asking for directions, getting change from a store clerk, and socializing at family gatherings. Late-deafened adults are unique in that their deafness carries no cultural identity. They are newly estranged from the "hearing" world to which they once belonged and they are excluded from the traditional Deaf community because they are "oral" and lack fluency in American Sign Language. No longer able to communicate with their families and peers, most late-deafened adults become confined to a limited world in which they are viewed as aloof, withdrawn, depressed, passive, and/or over-reactive (Jackson, 1982; Nowell, 1985; Reiter, 1990).

Past the critical period for language learning, most late-deafened adults do not develop a reliable mode of communication, whether in speechreading or manual communication. They are often forced to make major career changes because they experience communication and attitudinal barriers that do not allow them to reach their full potential.

At the present time, vocational rehabilitation programs for late-deafened people appear focused on meeting the needs of people who grow up deaf and aural rehabilitation programs for late-deafened people are designed to encourage auditory training and listening when the auditory function is severely impaired. Both of these service areas should be collaboratively addressing the difficulties of such things as continuing or re-entering the postsecondary educational setting, job counseling, vocational training, finding social and cultural activities where communication is not stressful, advocating for appropriate communication access, and coping with radical changes in lifestyle.

Data from the Rehabilitation Services Administration (RSA) reveals that 19,479 people with hearing loss were rehabilitated in 1990. Of those, 5,500 were prelingually deaf and 743 were prevocationally deaf. However, of the remaining 13,236 who experienced a postlingual and postvocational hearing loss, only 625 were successfully rehabilitated that year, using RSA's status 26 criteria. This is a trend that has been consistent over the years based on RSA-911 data collected from state vocational rehabilitation (VR) agencies.

An informal poll of late-deafened adults in four states indicates that service delivery from state VR agencies is less than satisfactory. The poll revealed that counselors are often unable to communicate with late-deafened people, frequently exhibit attitudinal bias, and generally remain unaware of the consumer's needs.

One of the primary reasons for negative consumer experiences with VR counselors is the counselor's lack of training and knowledge about late-deafened people. At almost all of the colleges and universities that offer allied health and counseling programs, cross-curriculum electives generally include Deaf studies where students learn about Deaf theater, Deaf poetry, Deaf history, American Sign Language, and other topics related to Deaf culture. Thus, these students only assimilate the rich cultural heritage of a minority of deaf people in the United States today.

As a result of this gap in knowledge and training of providers, it often takes late-deafened adults years to learn about coping strategies, assistive technology, and their basic rights to communication access. Nowhere in the rehabilitation scheme is there a specific place for the person with adult-onset deafness to learn how to readjust communication strategies and cope with the enormous adaptations required to formulate a new identity. The Association of Late-Deafened Adults has evolved to address those needs.

The Association of Late-Deafened Adults

In 1987, a group of people who became deaf as adults got together in Chicago. Although most of them had never met or spoken to another deaf person before, they found themselves comfortable with each other. There was a feeling of unspoken understanding and patience with each other's communication difficulties. The good feelings of that evening led to more social gatherings and self-help support groups. That evening was the genesis of what soon became the Association of Late-Deafened Adults (ALDA).

Since that time, ALDA has been striving to create an environment where late-deafened people fit in, a place where they can feel comfortable as deaf people working and living in a hearing society. ALDA has received hundreds of letters from late-deafened individuals experiencing essentially the same sense of profound isolation and hopelessness in coping with their disability. They enthusiastically respond to the services and activities that ALDA provides. Our organization is their link with people who, like themselves, struggle daily with the adjustment to deafness.

Our self-help groups provide opportunity for members to talk about their feelings, experiences, frustrations, and coping strategies with others who share the same sense of estrangement from the hearing world. Recognizing that late-deafened people want to get out and mingle without fear of communication failure, ALDA encourages social activities in a stress-free communication environment. Our organization also advocates strongly for relevant legislation, restructured rehabilitation programs that address our needs, accessible media, modifications in telecommunications policies, self-representation, consumer responsiveness, and compliance with all the major pieces of civil rights legislation, such as the Americans with Disabilities Act (ADA).

In 1992, ALDA received a grant from the Illinois Department of Rehabilitation Services to implement a model program where late-deafened adults in the Chicago area could receive services. Called ALDA-Link, the program provided direct outreach, consultation, and information services to late-deafened adults, their families, friends, and employers. Link staff provided information about late deafness and other related activities and programs, such as sign language classes, audiological services, Illinois' free TDD distribution program, vocational assistance, and various social and selfhelp activities.

ALDA has an "anything goes" philosophy when it comes to communication. We have no statements or position papers about the "right" or "wrong" way to communicate. Individuals can use sign language, speech-reading, or printed text. Similarly, ALDA has no preference or position on listening systems to heighten awareness of sounds in the environment. Some members wear hearing aids, some have cochlear implants, and some prefer vibrotactile aids, while others derive no benefits from amplification or simply choose not to try. ALDA believes that both the preferred mode of communication and the favored mode of amplification are personal choices for each individual.

While strongly in favor of consumer choice, ALDA recognizes that one of the greatest challenges we face is the need for group communication. Having lost our hearing after a period of normal language acquisition, most of our members do not use sign language and are unable to speechread proficiently. As a result, text reading is the only common denominator for successful group communication. By advocating for the use of computer-aided realtime translation (CART) as a reasonable mode of communication, we have embarked on a new journey that provides new and better ways to serve our population.

Computer-Aided Realtime Translation (CART): Meeting the Challenge of Communication

Whereas prelingually or culturally deaf people traditionally grow up with sign language as their preferred mode of communication, only a few deafened people know any sign language at all, and many are unable to speechread. People with adult-onset deafness generally require enormous amounts of motivation and time to become fluent in sign language or speechreading. A high majority have no family or friends who know sign language and, therefore, have little desire to learn it. Regardless of whether we eventually learn sign language, late-deafened adults require interpretation into the printed form, either as a temporary measure while learning sign language or as a long-term preferred mode of access. Thus, printed English in the form of capitions is an essential mode of interpreting for every deafened person.

In 1991, the Commonwealth of Massachusetts took an important first step when its Commission for the Deaf and Hard of Hearing (MCDHH) recognized the need to broaden its communication approach beyond sign language interpreters in order to serve its constituency. Realizing that speech recognition systems were not yet ready to meet consumer demands or needs, MCDHH, together with ALDA and the Massachusetts Shorthand Reporters Association (MSRA), determined that a feasible mode of interpretation would utilize the skills of court reporters (also known as court stenographers or shorthand reporters) with stenotype speeds of up to 260 words per minute.

Working collaboratively, the three organizations--ALDA, MCDHH, and MSRA--have developed and put into place a program whereby qualified court reporters (i.e., court reporters with additional training and experience working with deaf consumers) are invited to sign a state contract as providers of CART (Computer-Aided Realtime Translation) services. As a state agency, MCDHH established a purchase-for-service fund for CART services parallel to the purchase of services for interpreters. While other state and private agencies are required to pay for the service which is listed as an "auxiliary aid or service" in the Americans with Disabilities Act, MCDHH pays for the CART service for most activities sponsored by consumer-run, self-help organizations.

Currently, the three organizations are developing a training manual and a code of ethics for CART reporters similar to the code of ethics developed by the Registry of Interpreters of the Deaf. In order to increase the pool of qualified reporters, we also conduct regional training for court reporters who are interested in becoming CART reporters. Topics addressed at these training sessions include software and hardware requirements, shorthand skills--such as conflict-free writing and dictionary entries--confidentiality, ethical concerns, and sensitivity training on the communication needs and expectations of deaf consumers. While the National Court Reporters Association currently estimates there are approximately 40,000 active court reporters in the United States, only a small percentage are skilled in realtime reporting. Thus, if CART services are going to be offered universally as an auxiliary aid or service, the consumers must create the demand while the court reporting profession resolves the limited supply.

Conclusion

As late-deafened people, we see a great deal of hope and inspiration with the broadening scope of assistive technologies that allow us to participate in routine settings and with self-help philosophies that allow us to recover our plummeting self-esteem and teach us to cope with the communication barriers we meet daily. As consumers of rehabilitation services, we envision a time when all hearing-impaired populations are treated equally with respect and with diversified programs tailored to meet our unique needs.

Readers who would like more information about ALDA may telephone the author at [phone] (TTY/FAX) or write to ALDA, P.O. Box 93075, Rochester, NY 14692-7375.

Notes

(1.)The term, "deaf" (lower case "d") refers to any person with hearing loss so severe that communication and learning is primarily by visual methods. The capital "D" Deaf indicates a cultural identification with members of the Deaf community and the use of American Sign Language as the primary communication method.

People who are "hard of hearing" have some degree of hearing loss ranging from mild to profound, as defined by audiological measurement; can benefit to some extent from the use of hearing aids or other assistive listening devices; depend primarily upon spoken or written English in communicating with others (do not rely on any form of sign language as their primary means of communication); and may or may not have taken steps to deal with their hearing loss (i.e., audiological assessment, use of hearing aids or other technology).

The above definitions are from Rehabilitation of Individuals Who Are Hard of Hearing and Late Deafened: A Guide for Rehabilitation Practitioners, developed by the Region VI Rehabilitation Continuing Education Program at the University of Arkansas and produced under a grant (H246A20002) from the Rehabilitation Services Administration, U.S. Department of Education.

"Oral deaf" persons have an early onset (usually prelingual) of a profound hearing loss who have to communicate through the use of speech and speech-reading, writing, and reading and do not use sign language.

(2.)Accidental or acquired; not hereditary.

(3.)Hearing loss that results from vascular degeneration, particularly as one ages.

Bibliography

1. Jackson, P. (1982). The psychological and economic profile of the hearing-impaired adult. In R. Hull (Ed.) Rehabilitation Audiology. New York: Grune & Stratton (pp. 27-33).

2. Nowell, R.C. (1985). Psychology of hearing impairment. In J. Katz (Ed.) Handbook of Clinical Audiology, Third Edition. Baltimore: Williams & Wilkins, pp. 776-786.

3. Reiter, R.S. (1990). Psychology of the hearing-impaired and hearing aid use: the art of dispensing. In R. Sandlin (ed) Handbook of Hearing Aid Amplification, Volume II. Boston: College Hill Press, pp. 1-30.

4. Ries, P.W. (1982). Hearing ability of persons by sociodemographic and health characteristics in the United States. (Series 10, No. 140.) National Center for Health Statistics. Washington, DC: U.S. Government Printing Office.

5. Ries, P.W. (1992). Prevalence and characteristics of persons with hearing trouble. 1990-1991 Health Interview Survey, HR-2-9109. Health and vital statistics (Series 10). In press.

6. Schein, J.T. and Delk, M.T. (1974). The Deaf Population in the United States. Silver Spring, MD: National Association of the Deaf.