Promoting self-direction: consumer involvement in regional RSA brain injury centers.

Too often within the rehabilitation research community, input from people with disabilities regarding their experiences and perceived needs is not solicited. Service providers and researchers alike, working from their own perspective, propose research priorities, conduct research, and design co-called solutions which only partially improve existing service delivery systems. In the field of traumatic brain injury (TBI), it is only recently that consumers (individuals with TBI and theri families) have been given some opportunities to provide feedback on new initiatives, participant on advisory boards and review panels, or serve as paid project staff. However, the growth of consumerism, which Carney (1992) defines as the influence of consumer needs in policy and program development, has assisted the TBI community in forging a partnership to effect change and improve the current system of care.

Primarily the result of advocacy efforts by consumer groups, priorities were identified for establishing Regional Head Injury Centers for Rehabilitation and Prevention under the umbrella of the Rehabilitation Services Administration (RSA) mandate of "close consultation with and participation of individuals with traumatic brain injury and their families in the design and conduct of the centers" (Federal Register Vol.54, No.247, 1989). One philosophy unites the centers across all regions: no one can better identify the needs and aspirations of individuals with TBI than those people themselves. In addition to serving in advisory roles, consumers are actively engaged in the execution and evaluation of multiple projects. This article describes efforts made by each center to increase consumer involvement and facilitate self-direction. In doing so, the many contributions of dedicated survivors and family members are highlighted.

The Rocky Mountain Regional Brain Injury Center

The Rocky Mountain Regional Brain Injury Center involves consumers in every aspect of operation. The Rocky Mountain Center has a 15-member Governing Board with survivor representation. In addition, survivors and family members also participate in each of the center's 10 advisory committees. In particular, the Consumer Advocacy Advisory Committee (CAAC) has been critical to the operation of the Rocky Mountain Center by providing input Mountain Center by providing input and dirrection regarding the goals and objectives of the grant.

Center staff solicited and incorporated input from consumers, while developing and evaluating project requests for funding. For instance, one proposal resulted in the development of training in TBI for law enforcement officers. A former Denver police officer who sustained a brain injury when shot in the line of duty assisted the Rocky Mountain Center's Training Coordinator in developing the training curriculum and now assists in training sessions regionwide.

Survivors strongly expressed the need for self-advocacy and empowerment training in the region. As a result, the Rocky Mountain Center's Governing Board allocated dollars to fund the Self-Advocacy in Independent Living (S.A.I.L.) project. A self-advocacy and empowerment training manual is being developed jointly by staff and survivors for distribution throughout the region. Survivors will be trained to use S.A.I.L. in training other consumers in the region.

Concern was also voiced over the large unemployment rate of people with brain injury. Rocky Mountain Center staff and consumers wrote a grant to RSA to employ two survivors. These two survivors will participate in a series of internships over a 6-month period to learn about the different systems involved in case management (e.g., Social Security, vocational rehabilitation) with the goal of acquiring the basic skills needede to beocme case managers for other TBI survivors in Colorado.

The Rocky Mountain Center has survivors from all seven states involved in the development and implementation of public policy in three areas: prevention, the establishment of a designated state TBI agency, and long-term funding. Through their efforts, they are making a real and significant impact of future TBI service availability and delivery.

Comprehensive Eastern Regional Traumatic Brain Injury Rehabilitation and Prevention Center

Consumer involvement at the Comprehensive Regional Traumatic Brain Injury Rehabilitation and Prevention Center (TBI-NET) occurs in all projects. Consumers are members of the management team and serve on the advisory Board and multi-cultural Task Force. One particular project, the Head Injury Associations/Independent Living Centers (HIA/ILC) Linkages Project, focuses extensively on consumer self-determination and inclusion. The participants identify real-world needs and barriers faced by individuals with brain injuries and their families. The project is achieving a unified action toward realistic solutions and satisfactory outcomes. To facilitate community reentry, a person with a disability needs to obtain access to local resources for economic, occupational, and cultural integration. The Independent Living Centers are known for their expertise in community resources for consumers with disabilities, while the Head Injury Associations are experts in specific community resources needed by people with TBI. Thus, a partnership of these organizations will enhance the availability of community-based opportunities, resources, and public awareness for consumers with TBI.

The HIA/ILC Linkages Project has held regional conferences in which mutual training between Head Injury Association members and Independent Living Center members was accomplished. These regional conferences were planned, developed, and organized by consumers who invited members of the local community to attend. Throughout the year, representatives of the associations and independent living centers in each state have continued to meet for networking, cross-training, and educational activities.

The Southwest Regional Brain Injury Rehabilitation and Prevention Center

The Southwest Regional Brain Injury Rehabilitation and Prevention Center has also been committed to consumer involvement since its inception by involving consumers in the organization of the center itself. A total of 10 survivors of brain injury and 6 family members serve on the Advisory Board and on center committees. Consequently, a coalition of people with a variety of perspectives and experience has been formed. The center staff identifies this alliance as one of the center's greatest strengths. Through this coalition, consumers, professionals, and providers can obtain information in the development of services and work together with service professionals as allies.

Instructional Institutes developed by the Southwest Center are designed to prepare service providers to work more effectively with the recipients of their services and to promote the involvement of consumers in the design and implementation of service delivery systems. Each 3-day course brings together 150-200 invited participants, including vocational rehabilitation counselors, special educators, case managers, independent living counselors, community service agency personnel, survivors of TBI and their families, medical and allied health professionals, policy makers, and rehabilitation administrators. Faculty promote the adoption of values which can further the philosophy of:

* prevention of traumatic brain injury;

* adoption of best practices in services for traumatic brain injury in acute medical care, rehabilitation, and community reentry;

* development of community-based supportive services;

* informed choice in services used by survivors, family members, service players, and others;

* individualized, consumer-driven service delivery; and

* full physical accessibility to services and living options in all communities.

Southwest Center staff also recognized that few qualified survivors were known to professionals working in the TBI community throughout their region. This suggested a need to identify people with TBI who are able and willing to serve on boards and committees as well as to make presentations regarding the survivor's perspective on brain injury issues. Consequently, a roster of qualified consumers is currently under development and will be available to individuals and organizations wanting to include people with TBI in workshops, conferences, and speaking engagements and to appoint them to committees and boards. Additionally, center staff, in conjunction with the center's Committee on Advocacy and Empowerment, developed advocacy training for survivors and family members. Designed in a "train the trainer" format, the training emphasizes issue identification and prioritization, community organizing, legislative process, and action plan development. The first advocacy leadership training was held in Houston in early 1993. The Southwest Center also offers technical assistance to consumers. Currently, support is being offered to three survivor groups seeking to develop survivors' councils within their state head injury chapters.

Another means of facilitating the direct participation of consumers in the activities of the center is through their employment. Three full-time staff members at the Southwest Center are survivors of traumatic brain injury. In addition, the center has provided opportunities for five clients of the Challenge Program to participate in supported employment activities, enabling them to work part-time while developing employment skills for full-time work. For example, one person who had been doing maintenance work at the center recently left to accept full-time employment as a shop helper. He now has a driver's license and is working 40 hours a week at his new job.

The Southwestern Comprehensive Head Injury Center

The Southeastern Comprehensive Head Injury Center, based at the University of Alabama at Birmingham, serves a region of high need and previously inadequate service availability. Both the public and the private sector have joined in a commitment to serve the needs of the southeastern TBI population, sharing rather than duplicating materials and resources.

The Southeastern Center is designed to provide both empowerment and enhanced assistance to consumers throughout the service continuum. Since employability increases independence, promoting optimal vocational outcomes for people with TBI is a special emphasis. The Interactive Community-Based Model (ICBM) provides for care coordinators who will assist consumers in:

* gathering information concerning the client's family, previous education, work experience, physical and mental condition, personality traits, and attitudes;

* working with family, medical professionals, transportation providers, and others in determining and arranging required services;

* using data gathered to identify the TBI survivor's current level of functioning within the family and community;

* evaluating cost-effectiveness of services;

* offering training to the client and/or family on a variety of topics, including home safety, accessing community services, setting daily schedules, and social and recreational options;

* providing counseling services designed to encourage and support the TBI survivor and family members;

* establishing goals and intermediate objectives with the client and family; and

* planning everyday activities that take into account cognitive deficits and degree of family support.

The ultimate goal of the project's activities is to improve the client's readiness for services that will lead to employability.

Southeastern Center's advisory boards serve to guide and focus each of the center's project components as well as its administrative center. The Center Advisory Board is composed of three state vocational rehabilitation directors, two directors of state head injury associations, two TBI survivors, two family members, one vocational rehabilitation educator, two medical rehabilitation professionals, two acute care providers, one independent living center representative, one representative of a state Client Assistance Program, one rehabilitation technology specialist, and a representative of the Health Care Financing Administration.

The Survivor and Family Support component of the Southeastern Center addresses the issue of strengthening the capabilities of head injury consumer groups, family support groups, and advocacy organizations in addressing nonprofessional TBI support needs and fostering positive community change throughout the region. An Information and Family Support Linkage Program will be used to provide timely and accurate information to TBI survivors and family members on everyday problems and practical solutions associated with community reentry after TBI with a model information and referral service (toll-free HELPLINE) providing information on specific types of problems and a family support volunteer training program. Working with the RSA-supported Regional Independent Living Long-Term Training Project at Auburn University in Alabama, curriculum will be developed and then disseminated to facilitate empowerment of people with TBI and family members. Mailings and newsletters are expected by January 1995 with a conference on empowerment scheduled for 1996.

Ohio Valley Center for Head Injury Prevention and Rehabilitation

The other newly-funded regional head injury center, the Ohio Valley Center for Head Injury Prevention and Rehabilitation at Ohio State University, began operation in December 1992. While projects are only at an initial stage of implementation, the proposal for the Ohio Valley Center was developed with a spirit of "transcending consumer input and accomplishing consumer self-direction." This philosophy is reflected in the composition of the center's Advisory Council, the content of specific projects and, most importantly, in the center's philosophy of model public policy, social supports, and service delivery systems.

The Advisory Council for the Ohio Valley Center will consist of service providers, advocates, consumers, and representatives from state government. To increase the representation of consumers on the Advisory Council, each state head injury association in Ohio, Indiana, West Virginia, and Virginia will be asked to appoint two family members of TBI survivors and two people who have experienced traumatic brain injury, in addition to the state association's president or executive director. Because the Advisory Council will be quite large and can only meet periodically, a smaller Center Executive Committee will meet quarterly and directly oversee center activities. The Executive Committee will include all of the consumer members of the Advisory Council as well as representatives of the four state head injury associations. As a result, people who have experienced a traumatic brain injury, family members, and consumer advocacy staff will comprise a majority of the Center Executive Committee.

A guiding principle in the development of the Ohio Valley Center proposal was that people who have experienced traumatic brain injury and their family members should be the pivotal agents in directing prevention and rehabilitation efforts. Service delivery systems are not designed for such consumer self-direction. To address this incongruity, most projects of the Ohio Valley Center are eithe rconsumer-directed or are modeling new approaches that will be consumer-directed. For instance, the Ohio Head Injury Association in cooperation with the head injury associations in the other three states will provide training, systematic support, and networking for survivors' councils in each state in one project; in another project they will provide local support group leaders. Two other projects of the center will model and/or replicate approaches to case management. While case management often is not consumer-oriented, in both of these projects a service coordination role is proposed that would make the professional case manager accountable to either the individual who has sustained the injury or to that person's family member, rather than to a funding source or service provider. Still another project of the center attempts to facilitate self-directed services through the provision of training and technical assistance to individuals who have experienced head injury and their families as they make decisions and configure their own array of services.

The Midwest Regional Head Injury Center for Rehabilitation and Prevention

The Midwest Regional Head Injury Center for Rehabilitation and Prevention is dedicated to the belief that all people have the right and responsibility to make choices about their own lives and to experience success as active participants of society regardless of any disabilities. The Midwest Center's Advisory Council is comprised of people with TBI and family members who work alongside medical and rehabilitation professionals, state agency representatives, and community leaders representing a variety of programs to oversee the operation of the center and ensure that regional needs are met. In addition, consumers participate on each of the three advisory committees (medical, vocational, and community) and five working task forces. Input was solicited from each group regarding development of products and training materials. For example, consumers contributed information included in both the vocational rehabilitation counselor resource manual and the substance use prevention manual. Honorariums are provided to each consumer who reviews materials and participates in the various training programs.

During the last year, the Midwest Center has funded leadership training for support group leaders in four mid-western states and provided assistance to two states in establishing information and referral systems at state head injury association offices. Beginning in January 1993, funding was provided to the Michigan Head Injury Alliance to establish a community liaison in Grand Rapids, Michigan. This community liaison will function as a bridge between the state office and the local community and will assist people with TBI and their families to access services and local resources. Additionally, the Midwest Center facilitates a monthly phone conference between teh six state association presidents to promote information sharing and regional networking.

The Midwestern Regional Head Injury Center distributes a consumer targeted newsletter nationally three times a year. Topics for inclusion in each issue are identified via consumer input to staff and through information requests received through the center's helpline. Two consumers have also recently been hired as writing staff.

One of the primary goals of the Midwest Center is the provision of state vocational rehabilitation counselor training programs. Consumers participate in all phases of the development and implementation of training. In particular, they assist in identifying training objectives and participate on consumer panels as part of each training program.

The Midwest Region Head Injury Center believes strongly in providing vocational opportunities for people with TBI. The Midwest Center has identified itself as a job training site and currently works with the Vocational Rehabilitation Department at the Rehabilitation Institute of Chicago to identify candidates for placement.

Conclusion

Involving individuals with traumatic brain injury and their families in the RSA regional centers network promotes consumer self-direction. Enhanced self-direction is seen as a means of improving the service delivery system as consumers participate in the development of services and resources to meet their vast and changing needs. The failure of current practices to meet the needs of this population may be due to previous lack of consumer involvement. Only by incorporating their needs and perspective can the regional centers set the tone for future efforts and truly achieve a community-based, consumer-driven rehabilitation system.

Bibliography 

Carney, N. (19921). The influence of consumerism on rehabilitation service delivery and rehabilitation education. Rehabilitation Education, 6, 193-194.