The role of independent living centers in delivering rehabilitation services to rural communities.

More than 8.5 million people with disabilities live in non-metropolitan and rural areas. According to the National Center for Health Statistics, 12.75 percent of the rural nonfarm population and 12.6 percent of rural farm resident have serious functional limitations, compared to 10 percent of the urban population (U.S. Department of Health and Human Services, 1980). Despite this overrepresentation of people with disabilities in rural areas, barriers to living independently in rural communities far exceed those in urban areas (Schneider, Leland, & Ferritor, 1986). Numerous studies indicate that rural residents are more disadvantaged by disability than are their urban counterparts. Rural people with disabilities are less educated (Tamblyn, 1971), have fewer job opportunities (MacGuffie, Janzen, & McPhee, 1969) and, consequently, have lower family incomes (Matthews, 1974). Housing in rural communities is often inaccessible to people with disabilities (Van Vechten & Pless, 1976; Richards, 1986), and public transportation systems are poor when available at all (Revis & Revis, 1978; Richards, 1986). The meager supply of rural-based health care personnel and health care facilities (American Hospital Association, 1987; England, Amkraut, & Lesparre, 1989) compounded by inadequate training of health care providers to address the special needs of people with disabilities (Batavia, DeJong, Halstead, & Smith, 1988) means traveling long distances to urban centers to obtain adequate health care or ignoring health problems until they become critical, even life-threatening. Furthermore, the delivery of rehabilitation services is often impeded by hostile local attitudes toward "outsiders" (Page, 1989), refusal to accept assistance perceived as "charity" (Tonsing-Gonzales, 1989) or "welfare" from outsiders (Hutchinson, 1970), employer prejudices toward hiring workers with disabilities, and client resistance toward relocation for skill training and employment (Bitter, 1972; Clark, 1973; Hulek, 1969; MacGuffie, Janzen, & McPhee, 1969).

This article will discuss the most powerful barriers to independent living for rural residents with severe disabilities, then examine the application of some successful strategies to overcoming these barriers in specific rural communities.

Barriers to Rural Independent Living

In 1983, a meeting of 40 representatives of independent living programs in 13 states convened to discuss barriers to independent living in the community faced by rural residents with severe disabilities (Richards, 1986). The most significant barriers identified included the following.

* Housing - too few wheelchair-accessible housing units;

* Attitudes - misconceptions of the general public about and the need for greater visibility in the community of people with disabilities;

* Finances - difficulty of covering the extraordinary expenses of a disabling condition, such as personal assistance services, medical and pharmaceutical costs and special equipment with federal and state benefits programs such as Supplemental Security Income, Social Security Disability Insurance, and Medicaid;

* Transportation - absence of organized public transportation systems and inaccessibility of existing private transportation;

* Architectural Barriers - inaccessibility of buildings essential to participating in community life, such as court-houses, post officer, school, libraries, and banks.

* Limited Community Resources - lack of health care facilities and human service agencies;

* Isolation - unwanted solitude resulting from geographical limitations, weather conditions that affect transportation, inaccessible roads, and lack of contact with other people with disabilities; and

* Personal Assistance Resources and Household Support - insufficient availability of people and funds to meet the personal assistance needs of people with severe disabilities.

(Because the lack of personal assistance is a particularly pervasive barrier compounding the detrimental effects of the other barriers preventing or limiting employment, compromising health, and threatening survival, its ramifications will be discussed in more detail.)

Unavailability of Personal

Assistance

Personal assistance is defined as assistance from another person with activities of daily living to compensate for a functional limitation. For people with severe physical disabilities it means, more specifically," assistance, under maximum feasible control, with tasks aimed at maintaining well-being, personal appearance, comfort, safety, and interactions with the community and society as a whole. In other words, personal assistance tasks are ones that people would normally do for themselves if they did not have a disability" (Litvak, Zukas, & Heumann, 1987, p. 1).

Three levels of need have been identified.

* Minimal, for those who can perform functions autonomously but choose to use assistance to conserve energy and/or time or to minimize discomfort or damage to weakened muscles;

* Moderate, for those who could perform functions autonomously in emergency situations but require assistance to manage with a reasonable degree of efficiency; and

* Extensive, for those who could not perform survival functions under any circumstances (Nosek, 1990).

Rural residents with disabilities encounter severe restrictions in obtaining adequate personal assistance to meet even their most basic survival needs (Nosek, in press) and, according to leaders in the Association of Programs for Rural Independent Living (APRIL), also are forced to rely heavily on family, neighbors and friends, frequently resorting to word of mouth to locate assistance. As in urban areas, the most common source of assistance is family members; however, unlike their urban counterparts, rural families are more willing to accept responsibility for the needs of their relatives with disabilities and less inclined to expect the "system" to provide transportation, housekeepers, and personal care. The primacy of the stronger family unit and sense of duty to provide whatever a family member needs in rural areas are generally acknowledged (Marrs, 1989). This helping attitude is also evident in neighbors treating one another as extended family. Although helping a neighbor in need is expected more in rural in urban areas, people with disabilities are still reluctant to ask for long-term commitment or informal assistance with intimate personal tasks from people who are not related to them. Despite this willing attitude, rural families are just as susceptible as urban families to stress or "burnout" associated with assisting other family members with the extensive physical impairments (Carlson, 1990; Snyder & Keefe, 1985).

People in rural areas who seek, as an alternative, formal options for paid personal assistance are limited by funding restrictions as well as suitable assistants. Medicaid, the most common source of public funding, strictly regulates the provision of service and the characteristics of the provider. In one very rural northwestern state, for example, Medicaid funds can be used for personal assistance services only if the service provider is a certified nurse's assistant. Certification requires 12 months of experience in a nursing home within the past 5 years or completion of a training program for which tuition was charged. Since opportunities to acquire such experience are limited in rural areas, qualified service providers are difficult, if not impossible, to find in such states. Fortunately, most state policies are less restrictive and agencies that deliver home health services are usually able to at least meet the demand for survival services, though not without a struggle to locate qualified personal assistants.

Finding personal assistants is even more difficult for those who are not only ineligible for publicly funded services through a home health agency, but also cannot afford to purchase services using their personal resources. Although independent living programs can help recruit, screen, and refer potential personal assistants, unreliability and turnover among personal assistants is notoriously high. Typical disincentives to performing this type of work, such as erratic working hours and low wages, are compounded in rural areas by long distances to employers' homes, difficult terrain, poor road conditions, and inclement weather. In addition, one readily available option in urban areas - hiring low income members of minority groups or immigrants - is virtually nonexistent in many rural communities.

Considering the limitations on funding and the numerous obstacles to identifying people to work as personal assistants, it is not surprising that rural residents with disabilities have little access to the generally preferred options of using a full-time paid assistant or a combination of relatives and hired assistants. When 19 independent leaders in the independent living movement who use personal assistants were asked to rate options for receiving assistance in terms of cost, risk incurred by the consumer, quality of service, dignity afforded the consumer, and consumer control, using a full-time assistant was rated the highest, using a combination of relatives and hired people the second highest, and residing in an institution by far the lower (Nosek, 1990). Even the less preferred option of shared provider in a congregate living program, which tied for third place in consumer ratings, is unavailable in rural areas or requires that consumers move a long distance from home and family. Independent living programs that do have such facilities in their communities, which are usually available through funding from Housing and Urban Development, report extremely long waiting lists compounded by little turnover.

In practice, most rural residents with severe disabilities do qualify for public funding of personal assistance services due to their overwhelming inability to find employment and resulting low income level. Ironically, families may actively discourage relatives with disabilities on public assistance from moving to a more independent lifestyle if they have become dependent on their income support payments. Such dependence is even more common in states where family members are eligible to receive payment as assistants from public sources.

In summary, rural residents with disabilities who require personal assistance to function face overwhelming barriers to pursuing independent lives. They are forced by tradition, bureaucracy, and circumstance to depend on relatives for personal assistance, regardless of their preference or inconvenience to the consumer and family members alike. For those without family resources, such as widows or newly disabled young people, some assistance is available, but often at the price of dignity and self-determination. A movement is gathering support, however, toward consumer-directed services that are more socially than medically oriented. Many states are initiating publicly funded programs that help consumers locate personal assistants while allowing them to choose and manage their own service needs. This trend promises to expand opportunities for people in rural areas in securing the financial and human resources needed to meet their need for personal assistance. Only when people change their attitude toward having unrelated people provide assistance, and when publicly supported personal assistance services become more available, will options for independent living in rural areas truly expand.

Options for Delivering Independent

Living Services in Rural

Communities

A successful, nontraditional approach to overcoming these obstacles to living independently has been service delivery by consumer-controlled independent living centers. Although these centers initially served urban areas - the first independent living center opened 20 years ago in Berkeley, California - by the 1980's they were assisting people with disabilities to achieve independent lives across the nation, including rural communities (Richards & Smith, in press). The model underlying these centers - independent living - is defined as having "control over one's life based on the choice of acceptable options that minimize reliance on others in making decisions and in performing everyday activities. This includes managing one's affairs, participating in day-to-day life in the community, fulfilling a range of social roles, and making decisions that lead to self-determination and minimization of physical or psychological dependence on others" (Frieden et al., 1979). Although operation of the hundreds of centers varies somewhat according to community needs, independent living centers are unique in sharing four minimum criteria (Nosek, Jones, & Zhu , 1989):

* At least 51 per cent of governing board members are people with disabilities.

* At least one person with a disability is employed in a management role.

* At least one person with a disability is employed at the center in a staff, nonmanagerial position.

* At least two different independent living services are offered by the center.

In practice, most centers offer a wide variety of services. The four basic services provided by all independent living centers are: 1) information and referral, which include files on accessible housing, people available to serve as personal assistants, interpreters and readers, accessible transportation, and employment opportunities; 2) peer counseling (Barker, Altman, & Youngdahl, 1987); (3) independent living skills training, which may include courses on using various transportation systems, developing a personal support network, and managing a personal budget; and 4) advocacy, which consists of obtaining necessary services from other agencies in the community and activities to eliminate barriers to independent living (Kailes, 1988). Based on the needs of the community, additional services that may be provided include recreational and social activities, transportation, community education, equipment repair, and transitional services for young people moving from school to community living.

To deliver these services to rural communities, independent living centers use the following three different operational models:

* a center located in a rural community with a multicounty service area;

* a center responsible for serving an entire state, with staff members based in communities all over the state; and

* a center located in an urban setting with satellite offices in rural portions of its state.

In 1986, a national network of rural independent living centers was established. Today, APRIL has 31 members (Seekins, Ravesloot, Jackson, & Dingham, 1990). This network has successfully provided mutual technical assistance and problem solving among network members, assisted organizations seeking help in starting independent living services in unserved rural areas, and kept the rural independent living concerns of people with disabilities before national policy makers, other rural service providers, and consumer advocacy organizations.

Thirteen rural independent living centers surveyed in 1986 were instrumental in reducing the impact of barriers to independent

Dr. Nosek is Director of Research, ILRU Research and Training Center on Independent Living at TIRR, and Assistant Professor, Baylor College of Medicine, Houston, Texas, and Ms. Howland is Research Associate, Baylor College of Medicine. dependent living (Richards, 1986). To improve access to housing, 23 percent of the centers offered housing services and 83 percent referred people to accessible housing. To dispel negative attitudes against people with disabilities, 69 percent of the centers published newsletters, 85 percent maintained speakers' bureaus, 85 percent had media coverage, 83 percent offered peer counseling, and 50 percent provided family counseling. Transportation services were offered by 54 percent of the rural centers. Community advocacy activities, which were conducted by all of the centers, addressed the removal of architectural barriers. In an attempt to use the limited resources in rural communities, all of the centers provided information and referral. Rural independent living centers compensated for inadequate personal assistance services and household support by providing attendant care referral in 75 percent of the centers, family counseling in 50 percent, and independent living skills training in 75 percent. Isolation was combatted through the provision of transportation services by 54 percent of rural centers, social and recreational activities by 69 percent, newsletters by 69 percent, and peer counseling services by 83 percent.

In a study currently underway, Independent Living Research Utilization (ILRU) identified more than 300 programs that offer independent living services to rural residents with disabilities. Considering that only 13 programs could be identified as rural in 1983, the growth of service to this traditionally ignored segment of the disability community has been remarkable.

With the goal of promoting the development of independent living services to meet the needs of people with disabilities living in rural communities, ILRU established five rural independent living projects between 1983 and 1986, funded through a grant from the National Institute on Disability and Rehabilitation Research. Two of the sites established independent living centers, whereas the other three pursued other options for delivering services. Two of the rural communities that chose contrasting approaches to overcoming barriers to independence were selected for in-depth followup studies. People living in Town One formed an independent living center. In contrast, people in Town Two chose to promote independent living principles in existing community agencies and governmental entities with consumer coordination of existing services.

By 1987, significant improvements in reducing barriers to independent living had been made by both rural communities (Potter, Smith, Quan, & Nosek, in press). Common to both communities, all health care facilities became architecturally accessible, due to the installation of curb cuts, ramps, automatic doors, elevators, and accessible rest rooms. Similarly, nearly all public buildings, including the courthouse, civic center, post office, public library, schools, shopping malls, banks, and entertainment and service facilities became architecturally accessible. People with disabilities became actively involved in various advocacy and support groups related to disability and civic organizations, with several holding highly responsible public offices. Both also improved communication services, but through different means. Facilities for taping and braille printing, TDD services, and interpreter services became available through the independent living center in Town One. In Town Two, a local organization began to serve as central information and referral source, while a second organization prepared a written community resource guide.

The following improvements were also made in Town One:

* The number of accessible public housing and privately owned multi-family housing units markedly increased.

* The number of industries that employed people with disabilities consistently increased.

* Several local churches and the Senior Citizens Center began providing personal assistance to supplement the already existing formal system for hiring, training, and placing personal assistants through its Home Health Care program

* The telephone company lowered pay telephones in public buildings.

The following improvements were made in Town Two only:

* The sole taxi cab company acquired wheelchair-accessible cabs, which supplemented private cars made available through local churches and civic organizations and by transportation provided on a volunteer basis to retired community members.

* The number of tickets for parking in handicap spaces increased from 6 to 600.

In Town Two, the housing situation remained unchanged because there was no demand for government-subsidized accessible housing for people with disabilities, and some accessible housing already existed in the form of Federal Housing Authority (FHA) housing, nursing homes, and privately owned apartments. Likewise, improvements in employment opportunities were not needed, due to the relatively low unemployment rate (3.4 percent) combined with the high percentage of retirees (over 30 percent). At the start of the study, people with physical disabilities were already employed by the major industries and government agencies in the community. No formal mechanism for hiring, training and placing personal assistants was needed because most of these needs were being met through services for the elderly and retired.

Interviewing people with disabilities revealed that more people in Town One were aware of resources for independent living than were people in Town Two, mainly because the retired people in the latter group had little need to know about employment or vocational rehabilitation services. The most commonly known resources in Town One were accessible housing, transportation, vocational rehabilitation services, health-related services, and educational services. In Town Two, people were most aware of transportation, vocational rehabilitation, entertainment, educational services, and personal assistance services. People in Town One had learned about these services through the independent living center, other service providers, and friends, whereas those in Town Two learned from community organizations, especially senior citizen groups, and friends. The majority of interviewees were satisfied with their ability to obtain adequate information about resources when needed. The majority of interviewees were members of civic organizations and disability support groups, but those who were not members cited lack of knowledge about the organizations, lack of interest, and lack of transportation as reasons for noninvolvement.

Religious leaders interviewed indicated that church members watched out for each other and provided transportation, home visits, errand service, and similar services as needed. According to most religious leaders, special efforts to involve members with disabilities in church functions were unnecessary. Although some of the larger churches in Town Two provided formal financial assistance, this aid was designed for relief purposes only and not earmarked specifically for people with disabilities.

Media personnel interviewed indicated that all local radio stations, television stations, and newspapers were willing to provide space or time for public service announcements and community education, but that these opportunities were being underused by independent living proponents.

The results of the ILRU demonstration projects show that very different avenues to implementing independent living practices may successfully improve the quality of life for people with disabilities in rural communities. Because Town One began with few disability-related services as well as with economic hardship associated with recession in the oil industry, its citizens with disabilities clearly benefitted from the establishment of an independent living center to organize services, to seek funding for services, and to advocate for community change. Town Two, on the other hand, with its wealth of community services and primarily retired population with disabilities, was able to meet the needs of its people adequately without formally establishing an independent living center. Which approach is selected to deliver independent living services to a given rural community is not as important as tailoring the approach to meet the specific needs of the residents with disabilities.

Conclusion

Although a larger proportion of people with disabilities resides in rural than in urban areas, delivery of rehabilitation services to this population traditionally has been inadequate. Barriers to living independently in rural areas abound, including inaccessible homes, public buildings, and medical facilities; negative attitudes toward people with disabilities; insufficient finances; lack of accessible transportation; limited health care facilities and human service agencies; isolation; and insufficient personal assistance. These barriers can be overcome, however, through the efforts of consumer-controlled independent living centers and the implementation of those independent living services that best meet the specific needs of residents with disabilities.

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