Rural healthcare initiatives in spinal cord injury.

For a variety of reasons, people with spinal cord injuries (SCI) in rural areas have been underserved by the healthcare system.

Not only are there fewer healthcare providers -- particularly providers trained in rehabilitation or spinal cord injury -- family practitioners and other generalists in rural areas often have less experience with medical management f spinal cord injuries than do their urban counterparts; this lack of experience is due to the fact that people with SCI previously remained close to tertiary care centers to receive essential medical care following injury.

Similarly, behavioral healthcare has been fragmented and inconsistent. Few mental or behavioral health providers in rural areas are familiar with the unique challenges of spinal cord injury. In failing to recognize these challenges during diagnostic evaluation and treatment planning, persons with SCI have been treated ineffectively and/or inappropriately.

Other impediments to quality healthcare include transportation limitations, physical/architectural barriers, attitudinal restraints, and lack of knowledge about the specific needs of people with SCI in rural America. In spite of these obstacles, individuals with SCI and other disabilities are exercising their right to choose where to live and, increasingly, they are choosing rural communities.

Accurate estimates of the number of rural dwellers with spinal cord injury are not available, but perhaps as many as 13 million rural Americans have permanent disability of some form. The Breaking New Ground Resource Center (BNGRC) estimates that there are approximately 4,500-6,500 farm/ranch families with a member with SCI.[1] Although the healthcare delivery system has been slow to respond to the unique needs of this population, programs that may improve the quantity and quality of healthcare for persons with SCI in rural areas are being developed. These programs are not typically specific to the needs of persons with SCI, but are usually designed for individuals with a variety of disabilities.

Most rural healthcare initiatives operate on a state and/or local level (sometimes with financial support from federal agencies) and the reader is encouraged to contact local resources (e.g., Center for Independent Living, library, county commission) to identify available rural healthcare programs.

Barriers to Quality Care in Rural America

The major healthcare concern for persons with SCI in rural areas is access to high quality, least restrictive care. Lack of access to knowledgeable providers and adequately staffed and equipped facilities increases the potential for unnecessarily compromised quality of life, including reductions in independent functioning, productivity, and life satisfaction.

The obstacles to healthcare access in rural areas have been well documented.[2] Local, state, and federal government agencies have begun to focus on overcoming these barriers to provide more comprehensive and effective services.[3] This task has been enormous, however, given the disproportionate number of rural people who are poor[4] and the lack of financial resources in rural areas. The difficulties the general population experiences in accessing quality healthcare are compounded by the challenges associated with a disability. A previous needs assessment in rural Arkansas, for example, revealed the most significant problems encountered by persons with disabilities included economic limitations, unemployment and underemployment, restricted transportation, and healthcare shortages.[5] A survey by the Breaking New Ground Resource Center revealed that more than 30 percent of farmers and ranchers with SCI purchased and obtained service on their wheelchairs and other mobility aids more than 100 miles away from their homes. Additionally, approximately 34 percent lived more than 51 miles from rehabilitation services.[1]

Passage of the Americans with Disabilities Act (ADA) in 1990 is facilitating removal of barriers to healthcare, employment, transportation, and other important domains of life, but application of ADA to rural areas is slow and will take many more years before full compliance is obtained. There is sparse empirical data about the extent or impact of physical, educational, financial, attitudinal, and other barriers for persons with SCI in rural America. Nevertheless, anyone who lives in or travels to small towns in rural America will see that wheelchair accessible housing, shopping, recreational facilities, and public facilities are uncommon. The BNGRC study found that farmers and ranchers with spinal cord injuries were frequently unable to participate in previously enjoyed social and community activities, such as church or agricultural organizations, because facilities were physically inaccessible.[1] Furthermore, the continuing economic crisis in rural America has left many main streets with empty buildings. With the migration to urban centers, there is an increasing scarcity of resources for implementing changes to accommodate persons with SCI.

The limited available information suggests that the recognized barriers associated with rural areas have been shown to be very costly both to the person with SCI and the health delivery system. For example, delayed discharge from acute rehabilitation following SCI due to the lack of wheelchair accessible housing is costly to the individual and the rehabilitation hospital.[6] As many as 10 percent of all patients admitted for SCI rehabilitation have been found to be delayed in their discharge due to a lack of appropriate settings for discharge. The average costs associated with these delays was $29,280. The cost for one patient who remained in the hospital 210 days after being ready for discharge was $102,480.[6]

This problem was experienced firsthand recently by Dr. Clay (one of the authors of this article) at his rehabilitation center. A 24-year-old patient with C6 tetraplegia was ready for discharge for 2 months before actual discharge because facilities were not available that could provide the level of skilled care needed. As with many rural people with SCI, this patient did not have adequate access to reasonably-priced health insurance and, therefore, was underinsured. At a per diem cost of $987, this patient cost the hospital $59,220. There have been a number of studies evaluating the costs of care[7] and the effects of insurance coverage, payment, and utilization of monetary resources on psychosocial outcome in SCI.[8] However, to date there are no studies that look specifically at barriers to community reintegration and access to care specifically in rural areas related to costs of healthcare.

Research on outcome of persons with SCI is increasingly focusing on subjective well-being, or life satisfaction, as well as community reintegration. Life satisfaction has been recently identified as an important determinant of outcome for persons with disabilities.[9] Studies have found that persons with chronic physical impairments have reported lower life satisfaction scores than people in the general population,[10,11] but life satisfaction has been shown to be unrelated to the severity of disability.[10] Nosek and colleagues[12] examined the relationship between life satisfaction and self-appraised adequacy of personal assistance in 45 people with disabilities and found evidence suggesting that the adequacy of personal assistance may have a strong influence on life satisfaction. If the quality of care provided in rural areas is poorer due to lack of available caregivers and resources, life satisfaction, independence, and productivity will be lower also.

Overall, the problems of poor access to high quality care encountered by persons with SCI in rural communities are similar to those of persons without significant disabilities but are compounded by physical, attitudinal, educational, and economic barriers. Unavailability of quality care appears to have a significant negative impact on the quality of life for persons with SCI in rural America, although there is inadequate knowledge of the extent and nature of the barriers unique to SCI in rural areas. Nevertheless, advocates, clinicians, and researchers have heeded an unwritten mandate to develop innovative programs to meet the healthcare needs of this population.

Model Spinal Cord injury Systems

The 18 Model Spinal Cord Injury Systems, funded by the National Institute on Disability and Rehabilitation Research, are increasingly turning their focus to persons with SCI who have been underserved, including those in rural areas. Two collaborative demonstration and research projects involving several model systems and affiliated Centers for Independent Living (CIL's) are examples of initiatives that may prove useful to meeting the previously unmet needs of rural dwellers with SCI. The Mount Sinai Model Spinal Cord Injury System is leading a project to establish a national network of advocacy groups to focus on teaching, individuals with SCI how to participate in the development of clinical programs, influence the direction and scope of research, and direct policy development. The University of Michigan Model Spinal Cord Injury System is directing a project involving CIL's to enhance community integration by including independent living personnel during acute rehabilitation to help shift the focus from medical interventions and physical restoration to independent living following discharge. Further collaboration between the model systems and other tertiary care centers with CIL's is needed to enhance the transition from medical care to independent, productive living and to enhance consumers' advocacy skills. Through CIL's and national consumer organizations, consumers should become major players in state and federal healthcare policy, including guiding research, developing clinical endeavors, and advocating for legislation to serve rural areas.

Missouri Model Spinal Cord Injury System

The mission of the Missouri Model Spinal Cord Injury System (MOMSCIS) focuses on improving access to high quality rehabilitation services by supporting integrated comprehensive community-based systems of healthcare delivery. Increasing access is intertwined with identifying those populations that have been underserved. Through focus groups and discussions with community agencies (including a CIL), the MOMSCIS identified the underserved in Missouri to be primarily women, minorities, and those persons living in rural areas. Following the concept of "rehabilitation without walls," two projects were initiated to redesign the manner in which healthcare is provided to individuals in rural Missouri. The first involves a physiatrist-clinical nurse specialist team that travels on a quarterly basis to rural CIL's to provide education on SCI to the center staff, local physicians, and other local healthcare providers. Also, these CIL's provide space for a 'clinic" in which persons with SCI can be seen by the physiatrist and the nurse practitioner. Setting up clinics in churches, CIL's, local organization buildings, and other nontraditional settings is one way in which needed care can reach those in rural areas.

The second initiative is a collaborative project to establish a managed health delivery system for persons with disabilities receiving Medicaid benefits in central Missouri. Under the technical guidance of the Medicaid Working Group, the University of Missouri Health Sciences Center; the State of Missouri Department of Social Services, Division of Medical Services; and a licensed health maintenance organization, "Healthcare Options Plus," will soon be enrolling voluntary participants in a managed healthcare delivery model in which physiatrists will team with nurse practitioners and internists to provide primary healthcare for people with disabilities, including SCI. A focus of this program is providing outreach services to patients who are not able to travel for medical services and/or have not been able to establish a relationship with a knowledgeable community-based general practitioner. The outreach services, designed to prevent costly medical complications and improve quality of life for patients, will include healthcare professionals visiting patients m their homes to provide preventive and primary care. An additional aspect of the program design is the complete programmatic and financial integration of behavioral health services, including rehabilitation psychologists as primary mental health care providers. Finally, the local CIL is working with the other collaborators to teach consumers to hire, contract, and manage their own personal care assistants, which will be a covered service in Healthcare Options Plus.

AgrAbility Project

The AgrAbility Project was created with the 1990 farm bill to enable individuals with disabilities to resume their careers in agriculture.[13] This program, directed by the U.S. Department of Agriculture (USDA) Cooperative State Education, Research and Extension Service, in cooperation with the National Easter Seal Society and Purdue University's Breaking New Ground Resource Center, provides expertise and service to farmers, ranchers, and agricultural workers who have been injured and who might not return to work because of the lack of knowledge about the interaction between rural and disability needs.

AgrAbility currently operates in 22 states and, although its consumers include the 500,000 farmers, ranchers, and agricultural workers with varying disabilities, persons with spinal cord injury comprise one of the principal consumer groups.

AgrAbility focuses on providing education and assistance in the form of expert advice on modification of equipment and/or methods, coordinating resources, and promoting agricultural safety and preventing secondary injury. The BNGRC also provides technical and onsite assistance for persons with disabilities and conducts research and disseminates information addressing disability and agriculture.

Telemedicine

Telemedicine[1] is exploding across the nation and may prove to be a valuable tool for patients and providers in rural areas; its projects are in use or are being developed in at least 40 states with hundreds of millions of federal, state, and private dollars funding new initiatives. Although it involves a number of technologies, telemedicine usually refers to two-way interactive television providing long-distance specialty medical consultation (Perednia & Allen, 1995), which clearly makes it a promising form of health services delivery for persons with SCI, especially those who live in rural areas. Other common uses for this technology include education and administrative functions. As described by Perednia and Allen,[14] "Telemedicine can be useful for situations in which (1) physical barriers prevent the ready transfer of information between patients and healthcare providers and (2) the availability of information is key to proper medical management." Transportation difficulties and long distances between knowledgeable providers and consumers are common physical barriers whose negative impact on the lives of persons with SCI in rural areas should not be underestimated. Clinicians who serve remote areas note that patients often aggravate skin breakdown by traveling from home to the clinic to be seen, resulting in more costly and cumbersome treatment, including hospitalization. Telemedicine that utilizes "real-time" interactive video can efficiently bring much needed access to high quality medical services. In general, healthcare providers hope to use telemedicine to reduce the economic barriers and medical complications of providing rural healthcare.

In most rural settings, specialty healthcare services are unavailable to the community because the costs of staffing and infrastructure are prohibitive.[14] Physiatrists and other healthcare providers with specialized knowledge of SCI and its treatment can use telemedicine to provide services to persons who would otherwise have to travel great distances or only be seen by providers without specialty training. Increased access to high quality care potentially will facilitate prevention of secondary complications, reduce the morbidity of complications, promote health, and increase patients' confidence and satisfaction with treatment.

However, there exist a number of critical issues to be resolved prior to the easy and widespread application of telemedicine. Telemedicine has not been adequately tested for delivering care to persons with SCI, nor for persons with other disabilities. In fact, its effectiveness as a diagnostic and therapeutic tool remains largely unknown.[14] Furthermore, the cost of the infrastructure to support telemedicine may be beyond the financial capabilities of many rural communities. Finally, legal and social issues, including licensing requirements for providers of interstate services and liability for rendered services have not been adequately addressed.[14] Overall, telemedicine is a promising but not fully tested healthcare delivery model for rural SCI care.

Area Health Education Centers

The Area Health Education Center (AHEC) program is funded by the U.S. Department of Health and Human Services, but matching funds are often generated to meet the varied missions of the approximately 120 AHEC's. All AHEC's involve partnerships between medical schools and communities and many serve rural areas and facilitate the survival of rural hospitals and boost the number of physicians serving rural communities. For example, the University of Missouri and the Kirksville College of Osteopathic Medicine have teamed up with 23 primarily rural counties in Missouri to provide improved service to these counties and train medical students in these settings simultaneously. One of the core programs of the University of Missouri (MU) AHEC is the Rural Scholars Preadmission Program in which highly qualified rural students, who are committed to practicing medicine in rural areas, are guaranteed admission to the MU School of Medicine. The MU AHEC also uses advanced telecommunications and computer systems, including telemedicine, to link rural providers and students with specialists and other resources at the university.[15]

SCI healthcare providers should initiate involvement with rural AHEC's, because these programs provide an exceptional opportunity for improving healthcare delivery for persons with disabilities. Involving physicians-in-training and general practitioners in these programs may significantly improve access to basic rehabilitation needs of persons with SCI.

Rural Institute on Disabilities

The Montana University Affiliated Rural Institute on Disabilities Program is a comprehensive research and dissemination center whose mission emphasizes "full participation in rural life" by "developing and disseminating innovations in teaching, research, community services, and policy advocacy." An example of one of the many rural focused projects of this organization is identification, prevention, and management of secondary conditions. The most troublesome secondary conditions identified by persons with disabilities in rural areas were problems with mobility, fatigue, joint and muscle pain, chronic pain, and difficulties with access.[16] For persons with SCI specifically, the secondary conditions that were the most troublesome included problems with mobility, access difficulties, chronic pain, joint and muscle pain, physical conditioning problems, and spasticity.[17] Through a case management system in collaboration with CIL's, the Rural Institute on Disabilities is providing outreach workshops that include individualized assessment, educational and informational materials, peer support, and followup services.

Summary and Recommendations

We need to learn more about the barriers to high quality healthcare services for persons with SCI in rural America. There is a dearth of published empirical data on the obstacles to healthcare and community integration or the impact that these barriers have on quality of life. The limited existing information suggests that persons with SCI in rural settings are underserved. Several independent initiatives are beginning to identify the limitations of the current health delivery system and experiment with innovative delivery models, including increasing involvement of CIL's and consumers. Further health services research is needed to identify the critical resources to improve healthcare delivery in rural America. When combined with data from current health delivery experiments, this research will help shape much needed policy for health delivery in rural America.

Note

(1.) To locate telemedical clinics, contact the Telemedicine Research Center at http://tie.telemed.org.

Bibliography

[1.] Breaking New Ground Resource Center. (1992). Assistive technology needs assessment of farmers and ranchers with spinal cord injuries. Lafayette, Indiana: Purdue University.

[2.] United States Congress, Office of Technology Assessment. (1990, September). Health care in rural America. Washington D.C.: U.S. Government Printing Office.

[3.] Human, J., & Wasem, C. (1991). Rural mental health in America. American Psychologist, 46, 232-239.

[4.] Rowland, D., & Lyons, B. (1989). Triple jeopardy: Rural, poor, and uninsured. Health services research, 23, 974-1004.

[5.] Omahundro, J., Schneider, M.J., Marr, J.N., & Grannemann, B.D. (1982). Disability in rural America: A four-county needs assessment. Fayetteville, Arkansas: Arkansas Rehabilitation and Research Training Center, University of Arkansas.

[6.] Forrest, G., & Gombas, G. (1995). Wheelchair accessible housing: Its role in cost containment in spinal cord injury. Archives of Physical Medicine and Rehabilitation, 76, 450-452.

[7.] Waters, R.L., Sie, I.H., & Adkins, R.H. (1983). Rehabilitation of the patient with spinal cord injury. Orthopedic Clinics of North America, 26, 117-122.

[8.] Tate, D.G., Stiers, W., Daugherty, J., Forchheimer, M., Cohen, E., & Hansen, N. (1994). The effects of insurance benefits coverage on functional and psychosocial outcome after spinal cord injury. Archives of Physical Medicine and Rehabilitation, 75, 407-414.

[9.] Fuhrer, M.J. (1994). Subjective well-being: Implications for medical rehabilitation outcomes and models of disablement. American Journal of Physical Medicine and Rehabilitation, 73, 358-364.

[10.] Fuhrer, M.J., Rintala, D.H., Hart, K.A., Clearman, R., & Young, M.E. (1992). Relationships of life satisfaction to impairment, disability, and handicap among persons with spinal cord injury living in the community. Archives of Physical Medicine and Rehabilitation, 73, 552-557.

[11.] Menhert, T., Krauss, H:H., Nadler, R., & Boyd, B. (1990). Correlates of life satisfaction in those with disabling conditions. Rehabilitation Psychology, 35, 3-17.

[12.] Nosek, M.A., Fuhrer, M.J., & Potter, C. (1995). Life satisfaction of people with physical disabilities: Relationship to personal assistance, disability status, and handicap. Rehabilitation Psychology, 40, 191-202.

[13.] USDA Cooperative State Education, Research & Extension Service. (1995). AgrAbility Project: Promoting success in agriculture for people with disabilities and their families. Washington, DC: USDA.

[14.] Perednia, D.L., & Allen, A. (1995). Telemedicine technology and clinical applications. Journal of the American Medical Association, 273, 483-488.

[15.] Smith, D. Making a rural connection. Missouri Medical Review, 15, 3-9.

[16.] Seekins, T. (1992). Preventing secondary conditions in rural areas: A case management model. Human Services in the Rural Environment, 15, 9-13.

[17.] Ravesloot, C. (1996). Personal communication, May 30,1996.