Independent living services for older individuals who are blind: issues and practices.

Given the surge in the population of older people who are visually impaired, the rehabilitation community has devoted increased attention to the independent living needs of older people. Both the 17th Institute on Rehabilitation Issues (IRI) (1991) and the 15th Mary E. Switzer Memorial Seminar (Perlman & Hansen, 1991) emphasized the importance of independent living services to this population. The IRI Study Group Report delineated various elements of a rehabilitation model for elders and included a number of issues (e.g., the heterogeneous quality of elders, the importance of small gains, the importance of sustained functional ability, and the importance of sustaining active life). It is imperative from a policy and a service perspective that we not ignore the conditions of elderly individuals who are blind.

As blind people age, most strive to remain independent and productive. However, a variety of circumstances in the environment and in the public policy arena often threaten their ability to remain independent. Likewise, as those who are aging experience vision loss for the first time, the notion of independence becomes an unanticipated issue, particularly as it relates to the loss of sight. It is essential that we as a nation move toward a variety of models that promote dignity, choice, and self-esteem for our elderly citizens who are blind or severely visually impaired (Crews & Frey, 1993).

Demographics of Vision

and Aging

Nearly 1 out of every 6 Americans age 65 or older is blind or severely visually impaired - a group totalling over 5 million people (House Select Committee on Aging, 1992). One out of every four elderly persons over the age of 85 is severely visually impaired and represents a segment of the elderly population that is expanding most rapidly. While some of these individuals have no useful vision, many others have only partial vision. A majority of these cannot see well enough to read a newspaper, even with the help of eyeglasses.

The National Society to Prevent Blindness (now called Prevent Blindness America) estimates that approximately 50,000 people in the United States become blind each year. A great many of these are elderly people who are severely visually impaired but have some residual vision. Because the major causes of blindness and severe visual impairment are associated with the aging process, there has been and will continue to be an enormous increase in the need for outreach services to older individuals who are blind.

For a significant number of older citizens, blindness is a major contributor to dependence. Recent studies have indicated that as many as 30 percent of nursing home residents have severe visual impairments. Moreover, older persons who are blind are 15 times more likely to be institutionalized than are other older individuals (Rogers, 1993). With the public cost of nursing home placements now ranging from $20,000 to $30,000 per year, it is essential that more appropriate and less expensive alternatives be found. Many of these institutional placements could be avoided if older individuals with severe vision disabilities received the kinds of specialized training in adaptive living skills which can be provided under Chapter 2 of Title VII of the Rehabilitation Act of 1973, as amended.

In an effort to address these problems, Congress authorized Title VII Part C (Independent Living Services for the Elderly Blind) in 1973. However, an appropriation was not provided for Title VII Part C until 1986, at which time approximately 25 agencies were successful in securing VII-C funds to serve older blind persons. Since that time, Title VII Part C has been changed to Chapter 2 of Title VII as part of the Rehabilitation Act Amendments of 1992 (PL 102-569). Independent living services for older individuals who are blind are now being provided in 33 states and territories, with grants typically being awarded on a 3-year cycle.

Funding under Chapter 2 of Title VII of the Rehabilitation Act of 1973, as amended, provides independent living rehabilitation services to elders who are blind through an appropriation of approximately $8.1 million. These services enable individuals to perform tasks that preserve independence by continuing the activities of meal preparation, shopping, keeping checking accounts, maintaining the home, etc. These services allow for the preservation of dignity, self-esteem, and control that is centrally important in everyone's life. In a position paper prepared by Crews (1991) for the National Council of State Agencies for the Blind, it was pointed out that the number of elders who experienced vision problems so severe that they could not read newspaper print is surging as the general population ages. For example, in 1960, there were over 1.2 million older people who experienced severe vision impairment (that is, they could not read newspaper print with best corrective vision). By 1990, the population had increased to 2.7 million and by the year 2020, when baby boomers enter the ranks of the elderly, the numbers will increase to over 4.6 million (Crews, 1991).

In a national survey conducted for the Alliance for Aging Research, Belden and Russonello (1991) found that a large majority of Americans (66 percent) would like to live to be 100 years old. On the other hand, however, they reported that Americans are quite uneasy about losing their control and independence in old age. Nearly 8 in 10 say they fear ending up in a nursing home more than they fear a quick death from a sudden disease. Similarly, many - especially women - fear other effects of aging. A large majority of adults (75 percent) are concerned they will loose their independence as they age because of deteriorating health (Belden & Russonello, 1991).

The four leading causes of blindness among older Americans are cataracts, glaucoma, diabetic retinopathy, and macular degeneration (National Society to Prevent Blindness, 1992). Nearly 80 percent of the people who experience severe vision impairment in the United States - some 2.7 million people are over the age of 55 (Crews, 1991). Most of these people have lost vision in or near retirement years as a result of age-related changes in the eye. These 2.7 million individuals are therefore, by and large, people who have worked, reared their families, and retired as sighted people. They are likely not individuals who have been able to avail themselves of special education or vocational rehabilitation services that target younger populations.

More than 50 percent of the legally blind people in the United States today are 65 years old or older (Rogers & Long, 1991). No nationwide service delivery system currently exists to meet the independent living needs of older individuals who are blind. As "baby boomers" age, the number of older people with functional visual impairment will likely double (Branch, Horowitz & Carr, 1989). Because of advances in healthcare, many people now entering middle age will live into their 80's and beyond, thus joining the cohort that gerontologists call the "oldest old." Blindness and visual impairment are expected to be relatively common among members of this cohort. All too frequently, older adults do not seek or are not referred for vision rehabilitation services which promote independent living (Stuen, 1993). Older adults experiencing visual impairments must have the opportunity to learn how to do visual tasks in a new way that allows maximum functioning in the home, on the job, or at leisure. Given the number of older individuals who are severely visually impaired, there is a pressing need to examine the service delivery models being utilized to deliver independent living services to older individuals who are blind.

Models of Service Delivery

Chapter 2 of Title VII of the Rehabilitation Act of 1973, as amended, supports a broad range of rehabilitation services designed to increase independence. These include services to help correct blindness, such as outreach services; visual screening, surgical, or therapeutic treatment to prevent, correct, or modify disabling eye conditions; and hospitalization related to such services. Chapter 2 also provides for eyeglasses and other visual aids or equipment to assist an older individual to become more mobile and more self-sufficient. A wide variety of other services may be provided, including mobility training, braille instruction, guide services, reader services, transportation, and any other appropriate service designed to assist an older blind person in coping with daily living activities. These include rehabilitation teaching services and independent living skills training, information and referral services, peer and family counseling, and individual advocacy training.

In 1987, the National Council of State Agencies for the Blind (NCSAB), in collaboration with the Rehabilitation Research and Training Center (RRTC) on Blindness and Low Vision at Mississippi State University, established a joint committee for develop a data collection mechanism for connecting and analyzing data associated with the older blind independent living program. Agencies began voluntarily collecting and submitting data to the RRTC in 1988. Those data have been compiled and analyzed annually on a pro bono basis for NCSAB. Herndon et al. (1990, 1991, 1992, & 1993) and Stephens (1994) have published annual data analyses summarizing those types of services provided and demographic data on those who have been served. In reviewing each of these annual reports for the last 5 years, three basic types of service delivery models seem to have emerged from those states who have been successful in securing Chapter 2 Title VII grants. These models would be most accurately characterized as itinerant outreach models, center-based models, and mixed service delivery models, which combine aspects of both the itinerant outreach model and the center-based model.

The itinerant outreach model is best exemplified by the Alabama Division of Rehabilitation Services and the Vermont Division for the Blind and Visually Impaired. Both states are rural in nature with scattered population distribution and inadequate public transportation in rural areas. Many of the state agencies providing independent living services to older individuals who are blind have moved away from financing medical services to expanding the availability of low vision services and independent living skills training. This model can be particularly effective in providing comprehensive independent having rehabilitation services in underserved regions of a state. It can also be effective in conducting needs assessments for elderly individuals who reside in nursing homes and for providing vision assessments and low vision services to nursing and senior citizen centers.

The center-based model is best exemplified by the Tennessee Division of Vocational Rehabilitation (not currently funded), which has developed community-based senior citizen center low vision resources complimented by peer support and training in offering classroom skill instruction. The New York Commission for the Blind and Visualy Handicapped also utilizes a community-based, consumer-controlled, freestanding independent living center model through a contractual agreement. This model can be particularly effective in those states where large numbers of older blind individuals have in urban settings.

The Mixed Service Delivery Model is best exemplified in states such as Mississippi and Alaska where services are provided both in a comprehensive rehabilitation center and on an outreach basis to various regions within the state. This model can be particularly effective for those states which have large numbers of older blind individuals in urban areas as well as in areas which are underserved.

Severe visual impairment and blindness often lead to withdrawal from community activities, isolation, dependence on family or friends, and loss of self-esteem. These problems become even more complex when the individual is older and having in environments which are inherently isolating due to geographic and socio-economic factors. The needs of older blind Americans are numerous and complex. Many have problems in such areas as reading, money identification and handling /budgeting, administering medications, communication, shopping, preparing meals, dressing, socialization, isolation, and personal/psychological adjustment to blindness. This segment of the disabled population is believed to be subject to earlier institutionalization since they are seen as unable to maintain their independence.

Overview of Services

The initial Title VII Part C statutory language and subsequent regulatory guidelines did not require the Rehabilitation Services Administration (RSA) to conduct formal program evaluation studies of the older blind independent having program data. The 1992 Rehabilitation Act Amendments (PL 102-569) to Title VII now provide for data elements to be connected that will furnish a mechanism to conduct formal program evaluation studies on the independent having services provided to older individuals who are blind. Over 58,546 older individuals have received independent living services nationally under the Title VII program since data collection efforts were initiated by the RRTC in 1988. It is important to keep in mind that all states did not report their service data during this 5-year period. Likewise, some individuals could have been served more once during this timeframe. In reviewing each of the annual reports by Herndon et al. (1990, 1991, 1992, & 1993) and Stephens (1994), it is obvious that far more females than males have been served. This may reflect the longer lifespans of females and the fact that males appear more reluctant to seek or take advantage of independent living services. The largest proportion of those served nationally are 76 years of age and older. This is consistent with other published studies on services provided to older blind individuals. For example, Crews and Frey (1993) reported a larger portion served in the 75 and above age range by the Michigan Commission for the Blind.

In terms of service provision, the largest proportion of clients received training in community integration skills and daily living skills. Low vision services and communication aids training have also been widely provided by the 33 states that have received independent having grants for older individuals who are blind. The most common secondary and tertiary disabilities were cardiovascular conditions and diabetes, in that order. Most state independent living programs are serving between 350 and 600 older blind clients per year. The vast proportion of those served over the 5-year period for which data are available were white females. The primary services provided throughout this period of analysis included community integration skills and training and daily having skills. As state agencies gain experience and confidence in providing independent having services, the service delivery models have evolved and now offer a wide variety of services. For example, some agencies now offer peer companion programs, equipment loan programs, and visual screening. There is no doubt that this program has significant impact on helping older individuals who are blind to have more independently in their homes and communities and to participate more actively in the social, recreational, and civic of their communities.

Summary

Blindness and severe visual impairment are conditions whose handicapping effects vary with the individual, depending upon the degree of remaining useful sight, the person's ability to use residual vision effectively and efficiently in the performance of various tasks, and the presence of other impairments, such as loss of hearing or loss of actual sensitivity. Given the large numbers of elderly blind people, it is essential that efforts be made to expand the independent living program for this population throughout the country. The Rehabilitation Act Amendments of 1992 provide for a Title VII Chapter 2 formula grant program to take effect when the appropriation level reaches $13 million (currently, funding is at $8.1 million).

During the most recent grant competition under Title VII, 12 states that had been previously funded were unsuccessful, while 12 states not previously funded received new grant awards. The number of older individuals reported served dropped precipitously from 13,475 in 1990-91 down to the 9,305 (Herndon, 1993). Many of those counted as being "served' in the past were provided visual screening services; it is very likely that the loss of grants in those 12 states previously providing such services contributed to the drop in the number of clients served. Furthermore, it is also likely that the 12 states which received new grant awards also contributed to the drop in the number of older individuals served, especially when considering that these newly funded states had to hire new staff, solicit referrals, establish a service delivery network, etc. Given the inherent service delivery problems encounter in initiating new programs, it is counter-productive to establish programs and terminate those programs 3 years later. It would be far more prudent to expand the independent living program for older blind individuals into all 50 states and territories, given the cost-benefits associated with the program.

An aging population implies an increasingly disabled population, because the correlation between advancing age and prevalence of disability is quite high. Yet, only 31 states and territories currently receive federal funds on a 3-year cycle and 2 receive funding on a 1-year cycle for independent having services to older individuals who are blind. The 1992 Amendments to the Rehabilitation Act retained the requirement for grantees to incorporate any new methods and approaches relating to independent having services for older individuals who are blind into the State Plan. In light of this, the need for grantees to share new methods and approaches for delivering independent having services continues; there is also a need to conduct ongoing research or evaluation studies to determine the most effective service delivery models and the types of settings where those models are most appropriate in providing independent having services. Lastly, administrators who administer these programs need to ensure that independent living staff reach out to males, African Americans, and others who need such services to remain independent in their homes and community.

Bibliography

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