The challenge to independence: severe vision and hearing loss among older adults.

The combination of two sensory losses - particularly of hearing and vision - creates a barrier between the individual and his/her world that is difficult, if not at times impossible, to surmount. Among older adults this impairment is combined with other chronic conditions associated with age, as well as psychosocial issues such as loss and changes in activity. This creates a unique population with needs that differ, often dramatically and sometimes subtly, from those of other individuals who are deaf-blind.

It is not possible to provide an exact number of the people over age 55 who have both severe hearing and vision loss. Because of the variation in estimates of single sensory impairments among older adults, it is difficult to formulate reliable estimates. However, service providers with cross disability training readily recognize the existence of this group of older adults in large numbers.

There is a definite and demonstrable link between age and sensory loss. It has long been recognized that the incidence and prevalence of vision loss increases with age (National Society to Prevent Blindness, 1980; Nelson, 1987; Kirchner, 1985). Visual impairment is among the top 10 most frequent physical impairments among people over the age of 65 (Branch, Horowitz, & Carr, 1980; Blake, 1984). There is a similar link between age and hearing impairment (National Resource Center on Health Promotion and Aging, 1990; Glass, 1983), which is also among the most frequently cited impairments of persons over age 65 (Davis & Silverman, 1970; Williams, 1986). According to the one study that provides an indication of the number of people with the most severe impairment of hearing and vision by age (Wolfe, Delk, and Schein, 1982), the prevalence of deaf-blindness increases with age.

By the year 2030, the percent of people 65 and over in the United States will exceed 65 million (AARP, 1991). The proportion of older adults with the most advanced age is much higher than ever before. Coupled with information about the incidence and prevalence of vision loss, hearing loss, and deaf-blindness, it is possible to project a steady increase in the number of older adults with vision and hearing losses.

The population of older adults with both hearing and vision impairments is not a homogenous one. It is diverse in ways that affect both service needs and delivery. Probably the largest portion of the population are individuals who had been sighted and hearing for the majority of their lives and have acquired age-related sensory losses. These people are particularly vulnerable because the sensory losses are often dismissed as a normal part of the aging process and are not recognized as a cause of functional problems that could be remediated with rehabilitation services. Individuals who fit into this group may have other lifelong disabilities, such as mental retardation, or other age-related disabilities, such as arthritis. Individuals with limited access to preventative healthcare (regular vision and hearing exams), as well as certain ethnic groups (African Americans, Hispanic Americans, and Native Americans), are particularly vulnerable to age - related sensory losses.

The next largest group consists of individuals who have one sensory impairment - acquired at birth or early in life - and then acquire an additional age-related disability. Their situation is similar to that of a person with Usher syndrome who learns to cope with a severe hearing loss and is then faced with loss of vision. For these older adults the additional loss occurs late in life, after many years of successfully living with one sensory impairment. The older person is faced with returning to the rehabilitation process and to issues that had been dealt with and left behind.

The third category is represented by those with lifelong impairments of vision and hearing. These individuals, who are developmentally disabled, may not have been expected to live until adulthood, much less past 55 or 60. For them, the adjustment to later life is similar to that experienced by individuals with sight and hearing. They must cope with age-related chronic conditions and social changes, such as retirement or the loss of friends and family. This becomes difficult when there is no younger support system, such as children or grandchildren, or when community programs for older adults are unavailable. To complicate matters, there are indications that people with developmental disabilities, including congenital rubella syndrome, experience chronic physical problems often associated with advanced age earlier in life (O'Donnell, 1991; Cotten, 1986; Janicki, Seltzer, & Krauss, 1987).

Whenever needs and service solutions are discussed, it must be recognized that specifics will vary according to when the impairments have been acquired. There are three broad areas of need for this diverse population. Most specific needs can be subsumed under these broad areas; however, they should not be viewed as a completed conceptualization, but as a beginning in the process of understanding the needs of older adults with severe vision and hearing loss. These three critical areas are planning, support services, and program development.

For severely disabled people, who do not have the luxury of being able to successfully roll with the flow of their lives, planning is critical. It takes a good deal of energy and commitment to keep their lives flowing, particularly if independence is a valued lifestyle. For the person with a lifelong dual sensory disability, the transition into the later years is just as critical as the transition from school to community. Service providers, such as counselors, medical professionals, and rehabilitation workers, must be able to talk openly and honestly with older adults with sensory losses about the future, to encourage and teach planning, and, when necessary, to facilitate the planning process. Personal Futures Planning (Mount & Zwernik, 1988) could be useful. This technique develops a "circle of friends" willing to work with the individual to develop a personal profile and future "dreams." The Personal Futures Planning model would be extremely useful in bringing together fragmented families and service systems not used to working together.

Support systems are important to all older adults, particularly those with hearing and vision loss. Many older adults find that self-help and support groups that focus on a single sensory impairment are helpful. Support systems are being developed for parents of people with deaf-blindness; and it is slowly being recognized that siblings also need support. However, support systems are unavailable for the spouses and children of older adults with dual sensory losses. Just as with parents and siblings, caregiving often falls to spouses or children. Children often live far away from parents and find themselves divided between caring for their parents and for their own children. In some cases, the spouse is the caregiver who must deal with his or her own sensory loss or other chronic physical condition at the same time. As we live longer, children may find themselves in a similar situation. These family caregivers need support, information, and assistance to be good caregivers for their parents and spouses.

Older adults with developmental disabilities may not have spouses or children to provide support. Individuals who do not have families need a broader variety of support options, ranging from companionship to nursing care, in the home as well as in community facilities. Older adults with severe dual sensory impairments must have options outside of the medical longterm care system (i.e., nursing homes).

Finally, program development must be seriously undertaken. Currently, older adults with dual sensory loss at best have severely limited access to sensory rehabilitation services and adaptive aids. Such services could forestall institutionalization for many, and for those currently residing in long-term care facilities such services could increase independence or prevent further physical or cognitive losses. Rehabilitation services are desperately needed by individuals who are faced with learning to live with a second sensory impairment, as much as by those dealing with sensory loss for the first time. Regular medical screening that can prevent some losses must be available to everyone, particularly individuals from ethnic groups at particular risk and individuals with developmental disabilities. Community based services for older adults must become physically and socially accessible to sensory impaired persons who may be perceived as "sick" and dependent. Community based programming is needed for people with severe sensory impairments who choose to retire from employment, whether that employment is full or part time, competitive, sheltered, or supported.

Probably the most critical problem faced by a person with severe hearing and vision loss is how to maintain contact with the world in which he/she lives. A wide range of techniques for communication is available to the dual sensory impaired person; however, no technique will work when the other individuals in the environment do not know how to or refuse to use it. This is exactly the situation that many older adults find themselves in, whether they are institutionalized in long-term care facilities or struggling to retain inclusion in their community. All of the other needs discussed become moot points when the individual is unable to communicate with those around him.

Those responsible for program development, planning, and providing support - whether they are professionals or consumers, whether their constituents are people who are hearing or visually impaired - must realize that people have constellations of problems to deal with and for which they need assistance. It is not simply inappropriate but actually damaging to the individual to treat one part or problem at a time. It is imperative that service providers learn to recognize dual sensory loss and adapt their approaches to dealing with a single sensory loss in a younger population. Specifically, rehabilitation agency professionals must achieve the following:

* They must learn to recognize dual sensory losses and their effects on the individual.

* They must understand how hearing and sight interact and the effects of loss in one area on the ability to cope with loss in the other area and must promote that understanding among professionals and consumers.

* They must be able to adjust coping strategies that are heavily dependent upon one sense (hearing or vision).

* They must assist the consumer in maximizing remaining vision and hearing, as well as in developing alternative techniques by providing complete information and opportunities to experiment with and to learn to use devices and adaptive techniques.

* They must be prepared to support the consumer's use of adaptive techniques for communication and daily living by using appropriate communication strategies through interpreters and assistive devices and by developing staff skill.

* They must build bridges to other programs through cooperative agreements, working relationships, and cross referral that will allow the pooling of expertise.

The challenge to independence that severe vision and hearing losses bring is one that older adults must not be left to face alone. It is a challenge that has not been adequately addressed. It nonetheless is one that we can no longer afford to ignore. The alternatives, needless loss of independence, inappropriate institutionalization, unnecessary loss in the quality of life, and the unmanageable burden placed on families, will worsen as the older population grows larger.

Living Confidently with Vision

and Hearing Loss

The Helen Keller National Center with funding from the U.S. Administration on Aging has developed a structured educational program for older adults with hearing and/or vision loss. Located in senior centers, hospitals, a recreation department, and in a senior housing facility, this Confident Living Program (CLP) has been conducted nine times in Texas, Arkansas, New Jersey, and Tennessee.

This 6-week program educates and empowers older adults with sensory losses and provides a safe haven where vision and hearing loss is accommodated and issues related to that loss can be discussed with peers.

Facilitator materials, including a detailed manual containing the program curriculum, and participant materials are available through HKNC's Older Adult Program. CLP facilitator training is also available through HKNC. For additional information contact Martha Bagley, Coordinator, Older Adult Program, HKNC, 4455 LBJ Freeway, LB#3, Ste 814, Dallas, TX 75244. Telephone: [phone].

Bibliography

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2. Blake, R. (1984). What disables America's elderly. Generations, 8, pp. 6-9.

3. Branch, L.G., Horowitz, A., & Carr, C. (1989). The implications for everyday life of incident self-reported visual decline among people over 65 living in the community. The Gerontologist, 29(3), p. 359.

4. Cotten, P.D., & Spirrison, C.L. (1986). The elderly mentally retarded (developmentally disabled) population: A challenge for the service delivery system. In S.J. Brody and G.E. Ruff (Eds.). Aging and rehabilitation: Advances in the state of the art, pp. 159-187. New York, NY: Springer Publishing Co.

5. Davis, H., & Silverman, S.R. (1978). Hearing and deafness. (3rd ed.). New York: Holt, Rinehart & Winston.

6. Glass, L. (1983). Psychological aspects of hearing loss in adulthood. In Orlans, H. (Ed.). Adjustment to adult hearing loss. San Diego, CA: College Hill Press.

7. Janicki, M., Seltzer, M.M. & Krauss, M.W. (1987). Contemporary issues in the aging of persons with mental retardation and other developmental disabilities. Washington, DC: DATA Institute.

8. Kirchner, C. (1985). Data on blindness and visual impairment in the U.S.: A resource manual on characteristics, education, employment and service delivery. New York, NY: American Foundation for the Blind.

9. Mount, B., & Zwernik, K. (1988). It's never too early, it's never too late: a booklet about personal futures planning (Publication #421-88-109). St. Paul, MN: Governor's Planning Council on Developmental Disabilities.

10. National Resource Center on Health Promotion and Aging. (1990). Perspectives, 5(3).

11. National Society to Prevent Blindness. (1980). Vision problems in the U.S. New York: NSPB.

12. Nelson, K.A. (1987). Visual impairment among elderly Americans: Statistics in transition - statistical brief #35. Journal of Visual Impairment and Blindness, 81, pp. 331-334.

13. O'Donnell, N. (1991). A report on a survey of late emerging manifestations of congenital rubella syndrome. Sands Point, NY: Helen Keller National Center for Deaf-Blind Youths and Adults.

14. Williams, P. (1987). Hearing loss: Information for professionals in the aging network. Washington, DC: National Information Center on Deafness, Gallaudet University.

15. Wolfe, E., Delk, M., & Schein, J. (1982). Needs assessment of services to deaf-blind individuals. Silver Spring, MD: Rehabilitation and Education Experts, Inc. (REDEX).

Ms. Bagley is Coordinator of the Helen Keller National Center's Older Adult Program, 4455 LBJ Freeway LB #3, Suite 815, Dallas, TX 75244.