Outreach from the regional centers to improve services for brain injury survivors in the community

Outreach from the regional centers to improve services for brain injury survivors in the community

Mary Ellen Young

Outreach in the Rehabilitation Services Administrations’s (RSA) Regional Head Injury Centers is defined as the process of reaching out to others to reduce the human and economic consequences of traumatic brain injury (TBI). Because effective outreach is simple in concept but complex in execution, each regional center has undertaken outreach activities in different ways, but there are some underlying factors, common to all of them.

Basic to initiating a successful outreach effort is determining who is to be reached. This involves identifying key persons, groups, or organizations having responsibility or potential impact on achieving the center’s goals. In dealing with the complex issues of TBI, the key players may be:

* professionals providing services to persons with TBI (e.g., physicians, vocational rehabilitation counselors, social workers, special education teachers);

* organizations having direct responsibilities to persons with TBI (e.g., head injury foundations, independent living centers, government agencies, facilities);

* brain injury survivors and family members who are consumers of rehabilitation services;

* policymakers who decide the nature and funding levels of programs or services for persons with TBI; and

* the general public, including potential employers, whose attitudes and practices may greatly influence the true level of community integration achieved by brain injury survivors.

Having identified who is to be involved, the next question to be addressed by outreach efforts is how to effectively structure the key players to achieve the goals. Committees, consortiums, or task forces may be formed, with members charged to address broad or specific goals. Individuals or groups may also be on lists for dissemination of information about products (publications, video-tapes, audiotapes, manuals, training sessions, conferences).

Once the people have been identified and the structure of the outreach determined, they may then be contacted in a number of different ways–personally, by letter or telephone call; by formal or informal invitations to participate at various levels; or through advertising, directed to specific groups or to the general public.

Objective evaluation of outreach efforts may be measured in the number of people reached, how well they represent the target populations, and the actual achievements of those involved

Qualitative evaluation is more difficult. Effective outreach also results in recognition of the contributions of the people involved, the development of increased understanding among key players, the development of unit of purpose, opening of channels of communication, decrease in adversarial stances, and an increased respect for what others have to contribute to the achievement of the defined goals.

Southwest Regional Brain Injury Rehabilitation and Prevention Center and its Instructional Institutes

The Southwest Regional Brain Injury Rehabilitation and Prevention Center has undertaken a unique effort to each its goal of developing and implementing ann outreach program to expand the knowledge and skills of personnel providing services to people with TBI. The concept of Instructional Institutes surfaced during brain storming sessions for the grant application, but was more fully developed by the members of the Curriculum Committee together people from diverse groups interested in furthering the center’s goal of improved services. One Instructional Institute is held in each state, each year, for 3 years of the project period.

At their first meeting, members of the Curriculum Committee adopted a statement of philosophy to guide their planning efforts:

“We believe that persons with TBI have the right to learn, to live, and to work in the community. We believe that persons with TBI, their families, friends, and advocates have the right to services and information which assist them in making informed choices. We believe the services to persons with TBI should be consumer-driven, should focus on the functional needs of the consumer, and should include consummer involvement as these services are provided.”

The goals of the instittues are 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 150-120 participants together–including vocational rehabilitation counselors, special education teachers, case managers, independent living counselors, professionals from community service agencies, survivors of TBI, their family members, medical professionals, policymakers, and rehabilitation administrators. Participants expand their working knowledge about prognostic indicators and the continuum of recovery following TBI, as well as current strategies for providing effective services. To date, approximately 850 people from this region have participated in the Instructional Institutes on TBI. Participants are urged to return to their communities as change agents, to advocate for improving services to people who have TBI.

Strategies for Enchancingg Educational Reentry

A second area of outreach in the Southwest Regional Center focuses on the school communitya nd issues related to children and adolescents. A comprehensive continuing education program has been developed under the leadership of the center’s Education Liaison to describe TBI in the pediatric/adolescent population. This program can be included in staff development for educational professionals or as a lecture in special education training programs. The training outlines appropriate educational practices and provides opportunities to develop Individual Education Plans (IEP’s), classroom modifications, and other interventions for specific case studies. In addition to the training manual, which accompanies this program, center staff have researched topics/issues for inclusion in a booklet distributed through state and local head injury associations. Its target audience is educational professionals, but the booklet also includes simple “how to” lists for parents.

Another area of interest centers around current trends in “transition planning” for youth with disabilities, with specific emphasis on TBI. Approximately 250,000-300,000 students leave special education each year; the dropout rate for youth with disabilities is between 25 and 30 percent. Given statistics like these, the need to facilitate and support the transition of young people with disabilities cannot be ignored. A goal of the Southwest Regional Center is to design and field test a projector for “School-to-Adult Life Transition Services,” which can be implemented with existing systems in Region VI (Arkansas, Louisana, New Mexico, Oklahoma, and Texas).

Development of Injury Prevention Coalitions

The Injury Prevention Liaison of the Southwest Regional Center has established a working relationship with people who are in some way involved in brain injury prevention. Meetings have been scheduled in each state with people involved in injury prevention activities to introduce the center to the existing injury prevention network or to create a network where none exists, discuss brain injury prevention efforts in the state, exchange information, and, when necessary, introduce people involved in injury prevention activities to one another. The meetings have been held successfully in each state in Region VI. In addition, a working relationship has been established with people and agencies involved in injury prevention at a regional level.

To facilitate outreach, networking, and collaboration, the center’s Injury Prevention Liaison has compiled a directory which identifies agencies and individuals who are involved in injury prevention throughout the region and summarizes their activities.

The Injury Prevention Liaison also facilitates the creation of multiagency coalitions to sponsor injury prevention programs that address various high-risk behaviors. One of these projects is a multiagency coalition to develop an educational program for Gulf Coast area high school students on the risks and possible consequences of drinking and driving. Another coalition of organizations and individuals has been created to implement a bicycle safety program in elementary schools.

Some of the organizations involved in the outreach process include state departments of public health, offices of disability prevention, offices of injury control, bureaus of maternal and child health, city departments of health and human services, state departments of transportation, the National Highway Traffic Safety Administration, Mothers Against Drunk Driving, SAFE KIDS, THINK FIRST Brain and Spinal Cord Injury Prevention Programs, emergency medical services, bicycle clubs, state departments of education, Parent-Teacher Associations, major hospitals, rehabilitation facilities oand trauma centers, task forces on injury prevention, and state head injury associations and foundations.

Development of Housing Coalitions

Recognizing the growing need for long-term community housing of people with TBI, the Southwest Regional Center is actively seeking solutions through the Committee on Living and Working.

The center’s first meeting on housing was held in May 1992 in Houston, Texas, and was attended by survivors and family members, rehabilitation professionals, community agency personnel, and the Program Director of Special Needs/Housing Trust of the Texas Department of Housing and Community Affairs.

The outcome of this 2-day seminar was the formation of a Housing Coordinating Council, chaired by the Executive Director of the Texas Head Injury Association who has been a key person in disseminating information regarding housing issues to survivors and family members. The Southwest Regional Brain Injury Center’s staff has developed a housing needs assessment questionnaire which was distributed at the annual Texas Head Injury Association conference in August 1992 and at center-sponsored Instructional Institutes in each state in Region VI. This information is being used to characterize housing needs for survivors of TBI in the center’s five-state region.

It is the intent of the Southwest Regional Center to initiate similar housing seminars in New Mexico, Arkansas, Louisiana, and Oklahoma in the next 2 years. The goal of these 2-day seminars is to organize key persons/agencies in the states who will be instrumental in developing grassroots support for affordable housing for people with brain injury in their own communities. The center staff provides technical assistance and support as needed through the Community Integration Liaison for the center, who is responsible for initiating and coordinating the housing seminars in the states and utilizes the expertise of various local Southwest Regional Center committee members to accomplish these tasks.

Advocacy and Empowerment Training

Since its inception, the Southwest Regional Center has been committed to consumer involvement. This commitment extends beyond the limitations commonly exerted upon such efforts (i.e., permitting involvement so long as it remains limited, or so long as distance is maintained between the consumer and the professional). The center has involved consumers in the main framework of the center itself, with 10 survivors of brain injury and 6 family members serving on the Advisory Board and on the center’s committees. Consequently, a coalition of people with a variety of perspectives and experience has been formed.

While fulfilling the center’s commitment to consumers, the center’s Advocacy Liaison recognized that few qualified survivors were known to the professionals working in the brain injury field. This suggested a need to identify survivors 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 is being compiled which lists qualified survivors and is available to individuals and organizations who wish to include TBI survivors in workshops and conferences, arrange speaking engagements for them, or appoint them to committees and boards.

The Advocacy Liaison offers technical assistance to survivors of brain injury and family members. Currently, support is being offered to three survivor groups seeking to develop survivors’ councils in their state head injury chapters. In the past year, the Texas Head Injury Association–Survivors’ Council has selected board members and elected officers. They now hold regular meetings, and survivors throughout Region VI receive information on effective advocacy and empowerment. Information routinely provided includes the location of independent living centers and advocacy and empowerment groups and how to reach local advocacy leaders.

To address the advocacy needs of people who have had a brain injury and their family members, the committee has developed advocacy training to help them provide advocacy instruction in their home states. Five participants have been selected by each of the State Head Injury Chapters in Region VI. The first Advocacy Leadership Training was held in Houston, Texas, on January 9-11, 1993.

Comprehensive Regional Traumatic Regional Brain Injury Rehabilitation and Prevention Center (TBI-NET)

ALL TBI-NET projects contain out-reach efforts. Consumers (families and survivors) are the key participants in planning, administration, and dissemination of all activities. Overall, TBI-NET is conducting 13 projects. Three of these projects are being highlighted for their unique outreach activities.

Natural Setting Behavior Management

The integration into the home community of survivors of TBI who have residual behavioral deficits following rehabilitation places a financial burden and stress on their families. The ability to transfer the use of compensatory strategies by consumers is often lacking when the consumer is returned to his or her natural setting, and families are often inadequately prepared to implement behavioral management programs at home.

Natural Setting Behavior Management structures interventions in the consumer’s home, school, and/or work environments in order to develop skills directly applicable to functioning in those settings; it provides practical education in behavior principles of people in their own environment; and it seeks to develop a database to identify critical factors in the caregiver system which are associated with poor vs. successful long-term community integration and vocational outcomes. TBI-NET disseminates the methods and results to influence subsequent service delivery to this population.

The procedural aspects of the project involve a mobile outreach team that performs situational assessments, training, and implementation of the behavioral management plan in the consumer’s natural setting with thhe consent, involvement, and participation of the consumer and family members. Video taping is frequently used as a training tool in this project. The family monitors and evaluates the intervention on an ongoing basis and takes on increased responsibility to develop and implement the behavioral plan. This dynamic process invites ongoing education specific to the individual situation and the learning style of the family. The overriding goal is enhanced competency in the caregiver system leading to effective long-term management of target behaviors and sucessful community integration. The use of a mobile outreach team decreases the family’s reliance on the rehabilitation institution and fosters and practical philosophy that the family and survivor can collaborate successfully with professionals to develop and maintain long-term community liaisons.

The Needs of College Students with TBI

Another outreach effort of TBI-NET involves college students. In an effort to identify and enumerate the needs of these students, TBI-NET has extended its outreach effort to college campuses. Coordinators of services for students with disabilities at college campuses in the State University of New York and the City University of New York have worked with TBI-NET in locating students for the interview and survey process. Only a few students in this age group could be identified as incurring TBI, even though the incidence among persons 14-34 years of age is known to be very high. This suggests that students with TBI are underrepresented in the program serving students with disabilities. One explanation may be a relative lack of awareness regarding TBI by staff providing services to students with disabilities; another is that students with TBI are often unaware that services are available to them through programs for students with disabilities.

To influence more college students with brain injuries to take advantage of available services, college counselors need to participate in outreach activities to familiarize such students with the services that are available to them. Additionally, vocational rehabilitation counselors need to consider that college placement for students with TBI is an appropriate option and that students should be informed of the support services available.

The survey pointed out that students with significant brain injuries are succeeding in college even though their physical, cognitive, and social/emotional difficulties present many educational challenges. Often they are unable to take the number of courses required to be eligible for financial aid. Students with brain injuries indicate that they would like their college to increase the availability to tutoring, personal counseling, and self-help/study groups. They feel that these services would significantly improve their social/emotional functioning as well as their academic achievement.


Professionals in the field to TBI use tool to obtain an accurate history of their patients/clients. For professionals outside of the medical field, however, there is need for a brief, easily administered set of questions designed to screen for the presence of brain injury. H.E.L.P.S., an acronym for head injury assessment (H = hit on head, E = emergency room visits, L = loss of consciousness, P = any problems?, S = other significant sickenss, illness?) is such a screening tool. Better identification of TBI will lead to more appropriate referrals to effective treatment resources. Better screening will also indicate the need for treatment programs that take into acocunt the cognitive, physical, behavioral, and emotional sequelae of TBI as they impact on learning and the person’s ability to benefit from treatment.

Obtaining an accurate history requires recognition that the person may not conceptualize head injury in the same manner as does the clinician. Our experience has demonstrated that individuals questioned about a blow to the head may respond in the negative. However, if you ask the same person, “Have you ever been unconscious?” he or she may reply. “Oh yes–I woke up in the hospital 3 days later,” apparently not making the conceptual connection between loss of consciousness and brain injury. This phenomenon occurs with many people seeking services in many different types of health settings. People may not recognize that they sustained a brain injury unless specific causes of such injury and consequent behavioral changes are described to them. In addition, people may also forget traumas, illness, and injuries of childhood or be preoccupied with the current psychological issues that they are presenting. Thus, it is possible that some people are attributing changes in their behavior to other factors when, indeed, they are the result of a brain injury. Finally, other people may intentionally deny a prior brain injury to avoid stigma.

Professionals who routinely assess the health status of clients could assist in screening by asking this basic set of questions that might elicit a positive history of TBI. H.E.L.P.S. provides a simple process in which positive responses point to the need for further assessment. To date, copies of H.E.L.P.S. have been distributed to nearly 20,000 people.

Rocky Mountain Regional Brain Injury Center

The Employers Committee of the Rocky Mountain Regional Brain Injury Center (RMRBIC) has made substantial contributions to the Rocky Mountain Center’s efforts to address employment issues. This group includes employers from each of the states in Region VIII (Montana, North Dakota, South Dakota, Utah, Wyoming, and Colorado) who have hired one or more survivors of TBI and who are willing to spread the word about survivors as an untapped labor resource. We have several survivor members, one of whom is also an employer. The committee has developed materials anad a presentation outline which are used by the members in giving quarterly presentations to other employers to promote the hiring of survivors of TBI. Groups addressed have included chambers of commerce, local service clubs, the Mountain States Employers Council, and trade associations.

Brain Injury Consortium

Six public and private entities sponsored the 1st Brain Injury Consortium in Colorado in September 1992 to develop expertise on TBI in each school district. Teams from each public school district in Colorado were invited; 145 educators attended.

Medical Overview for Clinicians

The Rocky Mountain Center, members of the American Congress of Rehabilitation Medicine, Head Injury Interdisciplinary Special Interest Group (ACRM HI-ISIG), and the Statewide Educational Activities for Rural Colorado’s Health (SEARCH) held a conference, entitled “TBI-A Medical Overview for Clinicians,” which had the dual purpose to educate rural health professionals and to pilot curriculum developed by ACRM, HI-ISIG. Sixteen thousand rural healthcare professionals in the region were notified. Video tapes from the conference are being used to educate other health professionals who can study them to earn continuing education credits (CEU’s).

Law Enforcement

The Rocky Mountain Center has prioritized the training of peace officers (umbrella term for law enforcement personnel). Dave Roberts, a medically retired Denver police officer, who received a penetrating brain injury when he was shot while making an arrest in 1985, has been an integral part of the research, development, and implementation. Colorado District Attorneys and staff, Montana Highway Patrol, New Mexico cadets, and veteran police officers have been trained. The Rocky Mountain Center will continue to work with local contacts in each state to conduct the training and to try to incorporate into core curriculums of law enforcement academies the message that not all persons who stagger or have slurred speech are intoxicated. Some may have incurred TBI and are unable to respond quickly to interrogation. Peace officers need to avoid causing additional injuries to innocent citizens with disabilities.

Injury Prevention

The RMRBIC Prevention Advisory Committee, comprised of representatives from each of the seven states in the region, has undertaken an effort to change public policy related to TBI. They have designed a survey to determine existing and potential public policy initiatives on TBI prevention in each of these states and to identify those public policy initiatives for which the Rocky Mountain Center can provide assistance. The center will provide technical assistance to facilitate coalition building; share information on regional similarities, differences, and approaches; share information on potential sources of funding; and disseminate resource materials on other public policy initiatives and media resources. Through a grant to Community Medical Center, Missoula, Montana, an outreach program is being conducted with Native Americans to educate them about the prevention of TBI.

State TBI Task Forces

State-based focus groups were conducted at the initiation of the Rocky Mountain Center project to identify unmet needs and the perception of solutions within each state and to bring together people concerned about TBI programs and services.

The Public Sector Committee of the Rocky Mountain Center acts as the catalyst to develop state-based TBI task forces, which receive support and guidance and promote research efforts to assist in the development of progressive and innovative legislation in their states focusing on long-term financing, program development, prevention, and other concerns. Members of the Public Sector Advisory Committee work in mental health systems, in agencies serving people with developmental disabilities, in the corrections system, in Medicaid offices, in Indian Health Services, and in other public systems. TBI task forces, in turn, are typically comprised of some of these same people, along with equal or majority representation from consumers and family members. We have learned from other disability movements that “grass roots” support is the main determinant of success in enacting legislation.

Case Managers Referral and Training Network

An interagency referral network has been organized in each state of Region VIII. People within each system are identified as contacts and their names are added to the state resource data bases to facilitate expedient referral and communication. During the first year of operation, case managers held monthly teleconference calls and conducted study sessions on specific problem areas/topics with members of this network.

Independent Living Counselors

Training of independent living center staff and case managers is being conducted throughout the region through collaborative conferences with state head injury foundations and vocational rehabilitation counselor training sessions.

Midwest Regional Head Injury Center for Rehabilitation and Prevention

The Midwest Regional Head Injury Center for Rehabilitation and Prevention was approached by a semi-rural community in McHenry County, to assist in the development of services and educational programs dealing with TBI. A task force was formed, consisting of representatives from community mental health centers, rehabilitation facilities, the Illinois Department of Rehabilitation Services, independent livig centers, and local hospitals. Meeting monthly, the primary focus of the task force is to plan, develop, and improve access to a coordinated system of care for county residents with TBI.

Model Supported Employment

Additionally, the Midwest Center, Pioneer Center (a vocational rehabilitation facility), and the Illinois Department of Rehabilitation Services have entered into a collaborative relationship to establish and implement a model supported employment project for people with TBI. Funded by the Rehabilitation Services Administration, goals of the project include:

* clarifying the roles and responsibilities of the state VR counselor and supported employment staff;

* functionally assessing the unique needs of people with TBI; and

* identifying and developing community resources.

The model includes the development and use of a Community Support Network involving the state vocational rehabilitation counselor, the supported employment provider, employers, social service providers, and individuals with TBI and their families and friends. This network will enhance the community’s ability to provide the needed support for people with TBI.


The Midwest Center and the Rehabilitation Institute of Chicago (RIC) have also been designated as a model training center by the National THINK FIRST Foundation to facilitate training opportunities for other regional groups who wish to replicate THINK FIRST in their community. Over the past 2 years, approximately 9,000 Chicago students have been reached. Midwest Center staff maintains consistent contact with all state departments of health in Region V to promote prevention programs.

Technical Assistance

Another method of outreach is the technical assistance provided by Midwest Center staffers, which, to date, have provided specialized training in injury prevention, substance abuse prevention, and vocational services. About 204 state vocational rehabilitation counselors have been trained in Illinois, and additional training sessions are planned during 1993 in Indiana, Minnesota, and Ohio. In 1992, supported employment technical assistance has also been provided to 29 agencies in Wisconsin.

The Midwest Center has provided substance abuse prevention “Train the Trainer” programs for 30 RIC clinicians, some 150 survivors and family members have received substance abuse prevention materials, and a substance abuse prevention resource manual has recently been published.

Midwest Center staffers have also provided individualized technical assistance to various organizations and individuals as follows:

* They have worked with a parent group to establish an enrichment program for adults with brain injuries. This program’s objective is to maintain the intellectual, emotional, social, vocational, and physical capacity of a person who may be unable to maintain a job or participate in a vocational or educational program.

* They have made recommendations to the Indian Public Health Department.

* They have provided recommendations to organizations serving people with disabilities in the establishment of services to people with TBI.

* They have disseminated over 200 copies of the Region V Centers for Independent Living Directory.

* They have provided technical assistance to all Region V State Head Injury Associations.

* They have disseminated the In Contact newsleter to approximately 2,200 persons/organizations.

* They have provided a toll-free number of people with TBI, family, friends, and professionals in Region V.

* They have established an information and referral database for services in Region V.

COPYRIGHT 1993 U.S. Rehabilitation Services Administration

COPYRIGHT 2004 Gale Group