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Innovations in rural independent living.

Census data indicate that nearly 80 million people, that, one-third of the U.S. population, live in rural areas (Offner, 1989). This includes people living on farms, in small towns, on Indian reservations, and in cities across the U.S. with populations of less than 50,000. Between 11 and 15 million of these rural citizens have a chronic or permanent disability (Barker, O'Neill, & Karp, 1984; Matheson & Page, 1984). This represents a higher per capita rate of disability than exists in cities with populations over 50,000 (Kraus & Stoddard, 1989).

Most disabled citizens living in rural areas do not want to move to an urban environment and leave their familiar surroundings and culture. Yet, by remaining in rural areas they have far fewer opportunities to receive health care and independent living (IL) services than do their counterparts in urban areas.

As articulated elsewhere in this special issue of American Rehabilitation, services are often sparse in rural America. Few hospitals, schools, or law enforcement agencies have access to a sign language interpreter, the nearest place to buy or repair a wheelchair is often several hundred miles away, and no public transportation system exists - accessible or otherwise. Similarly, few public facilities are accessible. "Choosing between services or service providers is a laughable concept; getting any service at all is the critical question" (Tonsing-Gonzales, 1989, p. 3).

An increasing number of IL service options are being created in rural areas. There are currently 96 ILC's serving rural areas in 32 different states (Seekins, Ravesloot, & Maffit, 1989). Less than half of these programs receive federal funding through Title VII Part V (Seekins, Ravesloot, & Jackson, 1989). Some are funded entirely from state or local community resources and typically operate on a relatively small budget; they serve large geographic areas with a relatively sparse population. Most also appear to be independent, private nonprofit corporations directed and governed by people with disabilities. All serve adults with a variety of disabilities and offer a wide range of services. These community-based IL and service delivery programs located in rural areas are in particular need of technical assistance.

The Innovations in Rural Independent Living Project was initiated October 1, 1990. This project involves a collaborative effort by the University of Kansas, the Research and Training Center on Rural Rehabilitation Services (RTC:Rural), and the Association of Programs for Rural Independent Living (APRIL). The project was designed to:

* Identify exemplary rural IL programs that have successfully assembled unique resources to increase disabled citizens' potential to live independently;

* Verify the effectiveness of these programs and develop strategies to replicate these practices in other areas for similar groups; and

* Disseminate information from this nationwide project to other rural IL programs.

APRIL Board Members and project staff were polled to rank the importance of issues that should be solicited for Innovations Awards during the first year. Based on this process, the following issues were identified: accessibility of commercial and public buildings, accessible transportation, affordable and accessible housing, community support and responsiveness, disability rights and advocacy, resource development, peer support, and personal assistance for independent living. An announcement describing the Innovations in Rural Independent Living Program was published and distributed to over 1,647 independent living programs and Indian organizations and reservations.

In addition, personal telephone calls were placed to the independent living coordinator of each state office of vocational rehabilitation to solicit nominations of innovative rural independent living programs and describe the Innovation Awards Program and awards applications were distributed at various regional independent living conferences and a national conference on "Wellness and American Indian Women."

Over 60 applications were received and reviewed and 18 of those programs received site visits. From these programs, seven were selected to receive an award and invited to describe their innovative programs at the Rural Rehabilitation Conference (Common threads: Weaving together rural resources for people with disabilities) held in Missoula, Montana, on September 15-17, 1991.

The seven award winning programs include:

* Access Alaska (Fairbanks), for its approach to promoting accessible housing. Home accessibility is a crucial problem for many people with disabilities. The Independent Living Center in Fairbanks established a partnership with the local carpenter's union. Union carpenters volunteer their time and expert labor to make home access modifications for people with disabilities. Union volunteers are then "moved up" on the work list by the union's business manager for paying jobs. To date, over 60 home access modifications have been provided for people with disabilities. Initial funding to establish a revolving fund to purchase building materials was provided through a $2,000 grant from the Easter Seal Society. Access Alaska has recently received funding from the State of Alaska to expand the program statewide.

*The Easter Seal Society of Iowa (Des Moines), for promoting community support. The farm family rehabilitation management (FaRM) project assists Iowa farmers by providing support and access to rehabilitation technology to allow them to continue living and working on their farms after they become disabled. Program components include a peer technical assistance network of disabled farmers who are successfully working their farms; an ingenuity network of volunteers to fabricate assistive devices, generate ideas, and obtain materials; and a Mobile Rural Technology Unit to construct assistive devices onsite at the participant's farm. Over 350 disabled farmers have received assistive devices to allow them to continue farming since the project began in 1986.

* Southeastern Minnesota CIL (Red Wing, Winona, and Rochester), for promoting disability rights and advocacy. SEMCIL established consumer-driven access and advocacy commissions in three rural Minnesota communities. Each commission, composed entirely of people with disabilities, is designed to provide opportunities for people with disabilities to learn how to advocate for themselves at local, and national levels; to take an active role in their community by advocating for positive changes; and to improve the accessibility of their own community and enhance the integration of people with disabilities. Local impacts include creation of curb cuts, expanded transportation services, enhanced disability awareness of bus drivers and public officials, and access modifications in public buildings and public transportation.

* Access Hibbing (Hibbing, Minnesota) for promoting public building accessibility. Business owners and public officials often actively resist change, particularly if they believe they are being "forced" to change. Therefore, access advocates in Hibbing first created an access guide for public and commercial buildings and focused on enhancing community awareness about accessibility. In the process, they enlisted participation of the local chamber of commerce, newspaper, service organizations, and building officials in promoting the message that access is a benefit to everyone in the community. Information and technical assistance were provided to business owners and resulted in access modifications in numerous commercial buildings. The Hibbing City Council passed a resolution to make Hibbing barrier free.

* New Vistas ILC (Raton & Santa Fe, New Mexico), for promoting accessible transportation. The only form of public transportation in many small, rural communities is the ambulance service operated through the nearest hospital; thus, a one-way ride can cost over $100. Taxi and bus service is typically unavailable, so private transportation is the only possibility. Yet, many disabled people do not have personal transportation. An outreach worker from New Vistas ILC collaborated with a local Raton church to obtain federal funding to purchase a lift-equipped van to serve disabled and elderly residents in Raton. The church secretary maintains the schedule for the van and the church insures the van All van drivers are volunteers. In addition, the church uses the van to transport disabled and elderly members to Sunday services.

* Vision Northwest (Portland, Oregon), for its statewide peer support program. Vision Northwest coordinates peer support programs for people who have lost their vision as adults. Some 34 support groups, serving over 500 members, operate throughout the state. Vision Northwest maintains a toll-free telephone number for support group leaders and conducts monthly training sessions from them. Support group leaders guide discussions about both the physical and emotional aspects of coping with vision loss. Each peer support group also operates separate support group sessions for friends and family members.

* Rhode Island Housing and Mortgage Finance (Providence), for its approach to promoting personal assistance for independent living. RI Housing and Mortgage Finance is responsible for 9,627 Section 8 housing units located in 72 separate developments. The foundations of its senior health "Residence Services" program was initially funded by a grant from the Robert Wood Johnson Foundation to expand in-home assistance services to disabled elders living in public housing projects. RI Housing established a $1 million endowment to be used as matching funds for in-home assistance. Participating building managers similarly contribute $10,000 each year for in-home assistance services for disabled elders living in their buildings. Onsite services include homemakers services, financial management, information and referral, and attendant services.

Information about these programs will be included in the Rural Options Database. By retrieving existing options and those identified from fields other than rehabilitation, the database will extend the knowledge available to decision makers. Knowledge users will include staff and administrators of rural IL and VR programs at local, state, and national levels, consumer advisory boards, state IL councils, and board members of rural IL programs.

The structure of the database will permit users to find program and service options at local, state, and national levels for major rural IL concerns. For each area, such as housing or transportation, major issues, such as availability and affordability, will be identified. Concerns Report data from over 17,000 people in 12 states and needs assessment survey responses will be used to specify the issues that will serve as the framework for the database (Fawcett, Suarez de Balcazar, Whang-Ramos, Seekins, Bradford, & Mathews, 1988; Suarez de Balcazar, Bradford, & Fawcett, 1988).

Program and service alternatives will be identified for major issues in the IL field. Options will be organized under issue categories (e.g., housing, accessibility). Potential program and service alternatives will be obtained using written questionnaires and structured interviews involving IL experts with general and specialized knowledge. These will be reviewed and analyzed by experts in consultation with those reporting the alternative.

Each program or service option will have a narrative text that evaluates the program and describes contextual features that may affect its successful implementation. The issue of accessible and affordable housing, for example, may have as an option that of using volunteer carpenters to make access modifications for low and moderate income families. This option would be followed by a discussion of the advantages and disadvantages of that option and some conditions, such as the relationship between the ILC, city government, and local trade unions that may affect the adoption and successful implementation of that option.

This year, we have specifically targeted another seven programmatic areas, including alternative funding strategies for independent living, interagency networking, strategies to reach minority populations, leadership development, home accessibility modification programs, public awareness of IL philosophy, and health promotion activities.

Applications for the 1992 Best Practices Awards Program are available from: Innovations in Rural Independent Living, Institute for Life Span Studies, 4089 Dole Human Development Center, University of Kansas, Lawrence, KS 66049. The submission deadline for this year's applications was March 15, 1992.

Dr. Mathews is Associate Director of the KU Gerontology Center, 4089 Dole Human Development Center, University of Kansas, Lawrence, Kansas 66045.
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Title Annotation:Rural Rehabilitation
Author:Mathews, R. Mark
Publication:American Rehabilitation
Date:Mar 22, 1992
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