Involving consumers and service providers in shaping a rural rehabilitation agenda.

Government efforts to address the broad range of conditions faced by rural Americans have nearly a century of history. They date from the organization of the Office of Road Inquiry by Grover Cleveland in 1893 (Rasmussen, 1985) and the creation of the Cooperative Extension Services by Congress in 1914 to the recent establishment of the National Office of Rural Health Policy.

As with the increased attention of researchers to rural issues, such as the emergency and primary health care needs of residents of rural America (DeFriese and Ricketts, 1989), there has been a growing awareness of the problems of rural disability and rehabilitation. Since early discussion by Bitter (1972) and the initial assessment of the state of the art of rural rehabilitation conducted at the University of Arkansas in 1982 (Leland & Schneider, 1982), there has been a marked growth in projects to identify and address the special needs of people with disabilities who live in rural areas (REHAB BRIEF, 1990). Such efforts are important to the process of formulating an agenda for rural rehabilitation research and services. This article represents a consumer-oriented approach to shaping an agenda for rural rehabilitation and independent living.

Rural Rehabilitation

There are some inherent difficulties in assessing the needs of people with disabilities who live in rural areas. Even basic information such as the size of this population remains problematic, largely due to a lack of consensus on definitions of both "disability" and "rural."

The concept of disability is a complex one and involves an interaction between an individual's physiological or psychological conditions, personal characteristics, and the environment (Heller & Monahan, 1977; Mathews & Seekins, 1987). The World Health Organization's definition of a disability as "any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being" (WHO, 1980) is perhaps the most widely used. The National Health Interview Survey (NHIS), collected by the National Center for Health Statistics, bases its estimates of disability in the United States on a variation of the WHO definition in terms of limitations on activities usually associated with a person's age group due to an impairment or health problem.

The most basic definitions of rural are those used in counting the population. The U.S. Bureau of the Census distinguishes between rural/urban as well between farm/nonfarm rural areas. The Census definition of rural includes places with 2,500 or less residents and other areas outside named urban areas. Metropolitan Statistical Areas (MSA's) designated by the U.S. Office of Management and Budget refer to counties or groups of counties that represent an integrated area with a central city of 50,000 or more residents included in an urbanized area of 100,000 or more population. These areas include 77 percent of the population (Rural Health Research Program, 1991). While estimates of size of the rural population generally range from approximately 24 to 26 percent of the total population, varying and diverse types of "rural" settings result from these definitions (Cordes, 1989).

In a study based on the 1983 and 1985 nationwide samples of households conducted by NHIS, it was estimated that 14.1 percent, or 32.5 million out of 231.5 million civilian non-institutionalized United States residents, have an activity limitation due to chronic health conditions (LaPlante, 1988). Similarly, Krause and Stoddard (1989) reported higher rates of activity limitations among people living outside MSA's (16.7 percent of 55 million people) than were reported by residents of MSA's (13.1 percent of 181 million people) (Kraus & Stoddard, 1989). Based on these studies, it may be estimated that between 7.8 million (24 percent of all people with disabilities) and 9.2 million people with disabilities live in rural or nonmetropolitan areas.

Increased rates of disability in rural areas are not unexpected given two other demographic factors associated with both higher rates of activity limitations and rural residence: age and income. A greater proportion of the population of rural areas is over age 65 than is the case in urban areas and the median family income is consistently lower in nonmetropolitan than it is in metropolitan areas (Norton, 1989). In addition to activity limitations attributed to chronic health conditions that often accompany aging are those caused by injuries. Considerably higher injury death rates are associated with both lower incomes and rural residence (Baker, O'Neill, & Karpf, 1984). Finally, some of the most hazardous occupations that may lead to disability such as those in the resource extraction industries are primarily rural in nature. (Mathesen & Page, 1985)

Given the substantial numbers of people with disabilities in rural areas, surprisingly little information exists about the challenges posed or the solutions developed to meet their needs for rehabilitation or community services. The establishment of the Research and Training Center on Rural Rehabilitation Services RTC: Rural) at the University of Montana in 1987 through the support of the National Institute on Disability and Rehabilitation Research (NIDRR) provided an opportunity for providers as well as consumers of rehabilitation to define research and service issues of importance. One element of our work has involved documenting these issues from the perspectives of consumers and medical and community service providers. Further, by conducting our studies on a national level the diversity of rural settings is recognized at the same time that a means of identifying common themes is possible.

Identifying Rural Issues and Needs

Focus groups of consumers and providers at the RTC: Rural's first national conference on rural rehabilitation held in April 1988 set a goal for us to identify service issues involved in the transition of adults with disabilities from rehabilitation hospital to independent living in rural areas, and to develop program and policy recommendations for further research and training. The emphasis on transitional issues is an explicit recognition that the rehabilitation process does not end (and, in many cases, does not begin) with discharge from a medical facility. Rather, the rehabilitation process is an ongoing interaction between a person and his or her environment, including service providers and natural supports. In that sense, our approach reflects the behavioral perspective on the disability-rehabilitation process rather than the disease-medical model (Fordyce, 1976). Discussions at the RTC: Rural's conference suggest that the latter model falls short in meeting the needs of rural Americans.

Dimensions of Transitions

Our approach to consumer involvement as a means of identifying needs draws upon methods developed in earlier studies of people with disabilities in urban areas (Fawcett, Czyzewski, & Lechner, 1986). In narrowing the focus of our research on transitions issues, it was nearly to define those service and treatment functions included in the concept of transitions from a variety of perspectives. In addition to input from consumers participating in focus groups, a broad literature review was conducted. Further, in-depth interviews with personnel from hospitals that serve rural populations, discharge planners, vocational rehabilitation counselors, independent living center staff, and consumers living in rural areas provided other insights into the transitional process. As a result of these efforts, 21 broadly defined functions were identified that relate to transition from rehabilitation to a rural setting.

These functions, then, served as the basis for developing a menu of 315 potential survey items that reflected the concerns of rehabilitation service providers and consumers about the transition from a hospital to rural independent living. We worked with representatives from the three groups to select items from this menu that were relevant, clear, and complete. Three related surveys were designed to help define the major issues in rural rehabilitation from the perspectives of medical rehabilitation providers, community service providers, and patients/consumers.

The final surveys consisted of statements phrased in a positive manner that were to be rated by respondents on two dimensions: importance and satisfaction. A scale ranging from 0 (not important/not satisfied) to 4 (very important/very satisfied) allowed for calculation of importance (I) and satisfaction (S) scores for each item. A combination of these scores (IxS) provided a mean of identifying strengths while problems could be identified as those items with the greatest difference between importance and maximum satisfaction Ix(4-S).

Identification of Study Participants

We surveyed three primary groups to establish an issue agenda, including rehabilitation hospitals serving rural areas, rural independent living centers and, adults with physical disabilities living in rural areas.

The medical rehabilitation study population included a random sample of comprehensive inpatient rehabilitation facilities listed in the 1989 Directory of the Commission on Accreditation of Rehabilitation Facilities (CARF). Some 67 facilities were selected from a pool of 127 located in the 29 most rural states. Although most of these facilities were themselves located in metropolitan areas, they were considered to be ones most likely to serve rural populations.

Independent living centers (ILC's) were selected as representative of community service providers. Prior to this study, no comprehensive list of rural independent living centers existed. Working with the Association of Programs for Rural Independent Living (APRIL) and state ILC coordinators, 98 rural ILC's were identified and selected for the survey (Seekins, Ravesloot, & Maffit, in press).

Letters of introduction describing the purpose of the survey were sent to chief executive officers of the hospitals, who were asked to nominate a member of their staff to serve as respondent for the survey; a self-addressed, stamped postcard was provided for this purpose. A total of 43 (64 percent) of the sample population from 22 states returned completed surveys. A similar letter of introduction was sent to directors of independent living centers. A total of 49 (50 percent) of the total rural ILC's identified returned completed surveys.

The third stage of the survey process involved identification and recruitment of former patients/consumers. This proved to be the most challenging part of the study. In order to gather data from a nationwide sample while assuring anonymous responses, we decided to seek the help of respondents to the medical rehabilitation and ILC surveys. Contact persons were asked to mail, at RTC expense, surveys similar to the one they had completed to former patients or active clients. Forty-seven ILC's and five hospitals agreed to distribute questionnaires. A total of 368 survey packets were sent to these 52 programs.

As would be expected, given the low response rate from hospitals, most of the 124 consumers who returned completed surveys were contacted through ILC's. The respondents came from 25 states and reported a wide range of disabilities. It is of note that disabilities reported by the consumer population are among those typically treated at rehabilitation centers, but do not reflect the same proportional mix. For example, only 12 percent of consumers reported their primary disability to be related to stroke, whereas, on average, stroke patients represent 42 percent of the patients served by the rehabilitation centers. Consumers with spinal cord injuries represented 30 percent of the sample while constituting about 10 percent of the rehab sample.

Assessing Rural Needs: Three

Perspectives

Responses to our three national studies provide both demographic information as well as perspectives on issues. The median family income reported by consumers was $11,000; 53 percent were unemployed; and two out of three were Medicare/Medicaid beneficiaries. On average, nearly one out of three patients treated by comprehensive rehabilitation facilities resided in communities further than 45 miles. Some facilities reported that up to 42 percent of their patient population came from hometowns further than 90 miles and up to 30 percent came from distances in excess of 180 miles. Also, three out of four patients were discharged to their homes and 64 percent of facilities reported personal or telephone followup 3 months following discharge.

Results from the consumer survey confirmed that distance from specialized services is a distinctive fact that shapes the delivery of rehabilitation to rural residents. Of those consumers who had received rehabilitation services within the last 3 years, two out of three went to facilities further than 45 miles from home and one out of three went further than 120 miles. When asked how far they had to travel to see service providers within the last month, only one out of three had access to a physician specialist in their community and one out of four reported traveling further than 90 miles to a physician specialist. Similarly, approximately two out of five consumers travelled further than 45 miles to receive the specialized services of vocational rehabilitation counselors and therapists.

In the communities, rural independent living centers reported serving fewer than 30 percent of the nation's 2,400 rural counties. Yet, these programs serve over 44,000 consumers annually on a typical budget of $100,000-$250,000. Further, most of these programs were operated on local and state funding, rather than Title VII Part B.

Results of the surveys reported in Table 2 show common themes that cut across the three groups. Lack of community services in rural areas was ranked at the top of the list of problems by both the rehabilitation and ILC providers. Financial issues, although in somewhat different forms, appeared on all three lists. Problems associated with discharge planning were identified by both consumers and ILC staff. Lack of vocational options in rural areas was an issue raised by both consumers and medical rehabilitation specialists, as was the problem of lack of community support for people with disabilities.

Most of the problems identified suggest that people who residue in rural areas may face barriers affecting their ability to live independently that are somewhat different from those of their urban counterparts. The fact that rehabilitation typically takes place outside and, in many cases, far removed from the client's hometown is a barrier to the involvement of family and community service providers during rehabilitation. This lack of involvement is reflected in the concerns raised about discharge planning - both in terms of coordination with case managers and in having a home care program in place at discharge. These issues suggest potentially serious gaps in information that may affect continuity of care to maintain gains made during rehabilitation. It also suggests that an element of uncertainty is introduced into the transition process that might place additional burdens on the rural client and family.

The lack of community service providers is another reality of life with a disability in rural areas. Not only are medical and vocational specialists generally not available, but neither are more basic service providers such as personal care attendants. It is notable here that 88 percent of respondents to the consumer survey reported needing at least one type of assistance in carrying out their daily activities, such as in housekeeping, transportation, shopping, keeping medical appointments, mobility, and money management. Friends were most commonly listed as those who usually helped with any of these activities. Once again, gaps are implied in the formal service delivery network which would support the efforts of a person with a disability to live independently in a rural area.

Notably absent from the list of top problems is transportation. While consumers rated transportation as an important issue, their ability to go where they needed was ranked 45th in the problem ranking of 68 issues. While our data showed that consumers relied heavily on private rather than public sources of transportation, discussions of these findings with advocates for rural consumers suggest that many people have simply given up or have become accustomed to doing without, because they are convinced that nothing can be done about transportation. Alternatively, it may be that the other, more highly ranked issues simply present more of a problem to consumers.

The findings of our three national studies expand upon earlier work suggesting that people with disabilities living in rural communities are disadvantaged relative to their urban counterparts in economic, educational, and vocational areas (Omohundro, 1983). The results of our work indicate that there are basic deficiencies in the rural health and social services sectors that present barriers to seeking specialized rehabilitation services and independent living.

The common recognition by both consumers and providers that these problems exist is somewhat encouraging. Equally relevant, in terms of developing solutions to these problems, are some of the strengths perceived in the area of rural rehabilitation and adaptations made to meet the needs of rural residents. Taken together, these issues suggest a rural rehabilitation research, service, training, and policy agenda shaped by consumers and providers.

Developing an Agenda

for Rural Rehabilitation and

Independent Living

An important step in building a response to the problem of rural rehabilitation and independent living is to begin articulating criteria by which such efforts might be judged. Rural rehabilitation should systematically extend to all segments of the diverse rural population - to people of any age or gender and with any disability. Research, training, and program development efforts should address methods to attain the basic goals of health and independence for people with disabilities. These methods should respect the ecological and cultural diversity of rural areas. Further, where possible, the methods should be generalizable from one service sector to another, from one problem to another; and should address unmet rural needs. Finally, the methods should be sustainable.

One approach to developing solutions to rural rehabilitation problems involves a resource management approach, which assumes that it is unlikely (and perhaps undesirable) that there will ever be enough resources allocated to rural rehabilitation services to solve all problems. Rather, in rural tradition, this approach asks how available resources can be redefined, restructured, enhanced, extended, or supplemented to support the efforts of people with disabilities to live independent lives in rural communities.

Redefining Relevant Services

If one looks narrowly for specifically defined rehabilitation services there is often little to see in rural areas. On the other hand, there is a surprising abundance of organized services of one kind or another, such as churches, pharmacies, public health, and libraries, which are relevant to people with disabilities (Summit, 1991). These natural community support systems, however, rarely view their services as applicable to solving problems associated with disability or rehabilitation. One strategy for increasing support for rural independent living is to work with these systems, redefining their activities to show their applicability to rehabilitation and independent living.

One example of such a redefinition strategy is the RANGE EXCHANGE (Procter, Wells, & Seekins, 1991). The Rx uses the time-honored, community development strategy of organizing local resources through recruitment of Extension Homemaker Volunteer Units who provide information about adaptive equipment to isolated rural residents. This collaboration helped redefine the local extension organization to include services to people with disabilities. The program's popularity with participants has expedited its replication.

Another example of such a redefining strategy involves a support program developed by the Rhode Island Housing and Mortgage Finance Corporation (RIHMFC) (King, 1991). This traditional finance corporation noted the many problems faced by the agency's clients, landlords, and their low-income disabled tenants, including late rental payments and high turnover rates. RIHMFC redefined their range of services to include case management for tenants. Their new services increased tenant access to services and programs for which they were eligible. That, in turn, reduced cashflow and turnover problems experienced by landlords.

Restructuring Services

The structure of existing rehabilitation services often presents barriers to efficiency. In rural areas, geographic isolation adds another barrier. One strategy for improving services is to develop models for restructuring the relationships between existing providers and organizations.

One example of a restructuring strategy addresses the problem of promoting a smooth transition from inpatient rehabilitation to independent living in rural areas. By inviting community service providers to participate in discharge planning conferences via audio teleconference, information about the medical and social service needs of clients discharged from rehabilitation may be exchanged expeditiously. Installation stallation of a statewide WATS line is another means of encouraging staff and patient followup after discharge (Milhous, undated).

Another example of restructuring relationships is provided by the HAMMER Project of Fairbanks Alaska (Crandall, 1991). This project emerged as a collaboration between ACCESS Alaska, an independent living center (ILC), and the Fairbanks carpenter's union to improve the accessibility of homes. The ILC identified consumers needing home modifications and worked with them to secure materials through purchase or donations. Together, the ILC staff and carpenter's union designed projects; volunteer carpenters did the work. Such an effort restructured the relationships between public and private sector entities.

Enhancing Service Quality

The isolation of many rural communities also makes it difficult to maintain the quality of services. This problem often involves recruitment and retention of professionals, arranging access to professionals as consultants and providing training to providers to upgrade knowledge and skills.

There are many models for enhancing the quality of existing services. One example of enhancement comes from our efforts to address dysphagia - disorders in swallowing that may lead to life-threatening aspiration pneumonia. People with stroke and brain injury are at particular risk. In urban areas the problem is generally addressed by speech or occupational therapists, but in rural areas such professionals are usually available only on a limited basis. The Dysphagia Network model redefines the role of direct care providers (e.g., rural nursing home staff) to include symptom identification (Love, Sims, Garcia, & Jackson, 1991). Therapists are restructured into a rural dysphagia referral network and linked to participating nursing homes so they may conduct evaluations, design treatment plans and provide consultation. The components are wrapped together in a two-part self-supporting training program conducted by staff of a centrally located rehabilitation facility for nursing home staff and rural outreach therapists.

Extending Independent Living

Services

A number of good models for providing services in rural areas currently operate, but these are not widely known or generally available. One method for contributing to the improvement of rural services is to identify such programs and promote their adoption through information dissemination or policy advocacy (Whyte, 1982). Examples of such programs are rural independent living programs. Generally, ILC's are recognized as promoting the independence of people with disabilities, but rural ILC's face unique challenges and have developed innovative strategies for serving their consumers (Richards, 1986). Unfortunately, as noted earlier, fewer than 30 percent or rural counties even have access to IL services. Such programs should be extended by systematic efforts of dissemination, including increased funding stability.

Supplementing Existing Resources

Two recent studies show that while there has been significant growth in rehabilitation programs and personnel in the last 30 years the distribution of resources is far from equitable. Small run facilities are at a competitive disadvantage in the recruitment and retention of allied health professionals typically involved in rehabilitation programs (Institute of Medicine, 1989). Further, there are vast disparities in availability of medical rehabilitation services across the nation, with fewer inpatient facilities in the rural West and South than in other areas (Jackson, 1990). While much can be done to improve the availability of rehabilitation services by supplementing existing resources, it is reasonable to expect that additional resources, either new or reallocated, can be directed toward rural areas.

One particular issue that should be examined involves followup on rural demonstration projects. For example, several demonstrations of mobile outreach services have demonstrated great potential for training and utilizing rural providers as rehabilitation resources (Page, Bornhoeft, Barcome, & Knowlton, 1985; Milhous, undated). Unfortunately, such demonstrations too often do not continue after grant funding has ended. Efforts to obtain external support for direct services based on validated rural service delivery models should become a priority.

Conclusion

Rural residents are, almost by definition, dispersed and diverse. The dispersion contributes to the difficulty that policy makers, consumers, and rehabilitation providers have in focusing on the patterns of rural problems. The diversity of people who reside in rural areas makes it difficult to see their commonalities. One important contribution of research is to help both consumers and providers see their common problems and articulate their needs. A second is to point in the direction of solutions. This paper summarizes some of our efforts to address these missions.

Copies of the reports containing a fuller discussion of the studies may be obtained from the Research and Training Center on Rural Rehabilitation Services, 52 Corbin Hall, University of Montana, Missoula, Montana 59812.

Bibliography 

[1.] Baker, S.P., O'Neill B., & Karpf, R.S. (1984). The Injury Fact Book, Lexington, MA: D.C. Health. [2.] Biter, J.A. (1972). Some viable service delivery approaches in rural rehabilitation. Rehabilitation Literature, 33(12). [3.] Cordes, S.M. (1989). The changing rural environment and the relationship between health services and rural development. Health Services Research, 23(6). [4.] Crandall, B. (1991). Affordable and accessible housing: The HAMMER project. Common Threads Conference on Rural Resources for People with Disabilities. Missoula, MT: Rural Institute on Disabilities. [5.] DeFriese, G.H., & Ricketts, T.C. (1989). Primary health care in rural areas: An agenda for research. Health Services Research, 23(6). [6.] Fawcett, S.B., Czyzewski, M.J. & Lechner, M. (1986). A grassroots approach to state policymaking for persons with physical pisabilities. Journal of Rehabilitation, 52(1). [7.] Fordyce, W.E. (1976). A behavioral perspective on rehabilitation. In G.L. Albrecht, (Ed.) The Sociology of Physical Disability and Rehabilitation, Pittsburgh: University of Pittsburgh Press. [8.] Heller, T., & Monahan, J. (1977). Psychology and community change. Homewood, IL: Dorsey Press. [9.] Institute of Medicine. (undated). Report to Congress on the Study of the Role of Allied Health Personnel in Health Care Delivery. Washington, DC: U.S. Department of Commerce, NTIS. [10.] Jackson, K. (1990). Policy issues in physical rehabilitation: Access and selection of patients. Paper presented at the 1990 Annual Meeting of the American Political Science Association. Ann Arbor, MI: University Microfilms International. [11.] King H. (1991), Personal assistance for independent living. Common Threads Conference on Rural Resource for People with Disabilities. Missoula, MT: Rural Institute on Disabilities. [12.] Kraus, L.R., & Stoddard, S. (1989). Chartbook on disability in the United States. An Info Use Report. Washington, DC: National Institute on Disability and Rehabilitation Research. [13.] LaPlante, M.P. (1988). Data on disability from the National Health Interview Survey, 1983-1985. An Info Use Report, Washington, DC: National Institute on Disability and Rehabilitation Research. [14.] Leland, M., & Schneider, M.J. (1982). Rural Rehabilitation: A State of the Art. Fayetteville, AR: University of Arkansas, Arkansas Research and Training Center in Vocational Rehabilitation. [15.] Love, K.M., Sims, K.D., Reinsel-Garcia, S., & Jackson, K.O. (1991). Identifying and treating dysphagia in rural areas: A training and neworking model. A poster presented at the National Rural Health Association Annual Conference. [16.] Mathesen, D.V. & Page, C.M. (1985). Prepared testimony to the Oversight Hearings on the Rehabilitation Act by the 99th Congress (Serial No. 99-85). Washington, DC: U.S. Government Printing Office. [17.] Mathews, R.M. Seekins, T. (1987). An interactional model of independence. Rehabilitation Psychology 3. [18.] Milhous, R.L. (undated). Community-Based Rehabilitation. Paper presented at the Annual Meeting of the American Academy of Physical Medicine and Rehabilitation. [19.] Norton, C.H., & McManus, M.A. (1989). Background tables on demographic characteristics, health status, and health services utilization. Health Services Research, 23(6). [20.] Omohundro, J., Schneider, M.J., Marr, J.N., & Grannemann, B.D. (1983). A Four County Needs Assessment of Rural Disabled People. Fayetteville, AR: University of Arkansas, Arkansas Research and Training Center in Vocational Rehabilitation. [21.] Page, C.M., Bornhoeft, D.M., Barcome, D.F., & Knowlton, D.D. (1985, September/October). Providing outreach services in a rural setting utilizing a multidisciplinary team: The CARES Project. Rehabilitation Literature. [22.] Procter, N., Wells, M., & Seekins, T. (1992, Spring). A rural assistance technology outreach program by extension homemakers. American Rehabilitation, 18, (1). [23.] Rasmussen, W.D. (1985). 90 years of rural development programs. Rural Development Perspectives, 2, (91). [24.] REHAB BRIEF. (1990). 2,(11). [25.] Richards, L. (1986). Independent living in rural America: The real frontier. Houston, TX: Independent Living Research Utilization. [26.] Rural Health Research Program. (1991). National Rural Health Policy Atlas. Chapel Hill, NC: The University of North Carolina. [27.] Seekins, T., Ravesloot, C. & Maffit, B. (in press). Extending the independent living center model to rural areas: Expanding services through state and local efforts. Rural Special Education Quarterly. [28.] SUMMIT, Inc. (1991). Overall provider report: Perspectives on services to people with disabilities in four countries in Western Montana. Missoula, MT: SUMMIT, Inc. [29.] Whyte, W. F. (1982). Social inventions for solving human problems. American Sociological Review, 47, 1-13. [30.] World Health Organization, Geneva. (1980). Some of the most hazardous occupations that may lead to disability such as those in the resource extraction industries are primarily rural in nature.

Dr. Jackson is Research Associate, Community Rehabilitation Center, Missoula, Montana. Dr. Seekins is Research Director, Research and Training Center on Rural Rehabilitation, University of Montana. Dr. Offner is Director, Montana University Affiliated Rural Institute on Disabilities, Missoula, Montana.