Introduction to the RSA regional brain injury centers – Rehabilitation Services Administration
L. Don Lehmkuhl
To stimulate improved care and research for any serious medical condition, at least three key factors are necessary: an interested and concerned medical group, active consumer groups, and government support, encouraged by these meducal and consumer groups. In the past few years, these elements have come together to focus on improved services for the 400,000 to 500,000 people hospitalized each yeat with permanent sequelae from brain injuries. The result has been an advocacy movement for improving the availability and quality of services for people with brain injury and their families. The National Head Injury Foundation (NHIF)–the primary consumer group–played a significant role in this movement by expressing to legislators federal personnel its dissatisfaction with the quality and availability of appropriate Services.
In 1987, the U.S. House of Representatives Committee of Appropriations encouraged the establishment of an Interagency head Injury Task Force to identify the gaps in research, training, and service delivery and to recommend solutions in meeting the needs of people in meeting the needs of people with traumatic brain injury (House-Report No. 100-256, page 81). At the same time, the U.S. Senate Committee on Appropriations encouraged increased efforts among government agencies in these same areas (Senate Report No. 100191, page 103). The task force was established in early 1988 by the Secretary of the Department of Health and Human Services. He appointed as in chairman the Director of the National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health (NIH).
Thirteen federal agencies provided representatives to serve on the task force. Participating agencies include the Department of Defense, the National Institute of Disability and Rehabilitation Research, the Department of Transportation, the Veterans Administration, the National Science Foundation, the National Institute of Mental Health, the National Center for Health Statistics, the Food and Drug Administration, the Centers for Disease Control, the Health Resources and Services Administration, the National Center for Health Services Research/Health Care Technology, the Health Care Financing Administration, and the National Institute of Neurological Disorders and Stroke.
In carrying out its activities, the task force defined its scope to focus on traumatic brain injury (TBI). The knowledge and understanding of TBI by task force members were enhanced through the solicitation of public comments during a 2-day public hearing (September 8-9, 1988) in Washington, DC. These findings, along with the activities of the task force’s three sub-committees, provided the background and framework for examining the problems and addressing their solutions.
The task force noted that the acute and long-term care, rehabilitation, and community reintegration of people with TBI pose unique problems that overlap with many other neurologic disabilities but that are distinct and different. These range from the acute response of the brain to trauma to the long-term consequences of frontal or temporal lobe damage in a child or adult. The gaps in understanding among healthcare providers and the community about the problems associated with TBI often result in counterproductive, long-term management of the survivor in existing care systems designed not for persons with TBI but rather for persons who are paralyzed, mentally retarded, or mentally ill. In addition, TBI poses its own unique problems in children and elderly persons. For these reasons, the task force developed a set of recommendations that would represent the core of a national strategy for dealing with TBI and identified issues to be addressed in the implementation of its six recommendations. These recommendations and issues to be considered are contained in the Interagency Head Injury Task Force Report (February 1989) published by the National Institute of Neurological Disorders and Stroke, NIH, Public Health Service, U.S. Department of Health and Human Services, Bethesda, MD.
These are the recommendations of the task force:
* Establishment “traumatic brain injury” as a category in reporting systems.
* Designate a lead federal agency with responsibility for overall coordination and planning for federal, state, and private sector activities; establish a government/private sector advisory group to assist the effort.
* Encourage the establishment of working groups at the state and local levels to provide leadership and coordination.
* Create a national network of 15 comprehensive regional brian injury research centers, beginning with the immediate establishment of 5 centers and adding 5 additional centers per year for the next 2 years.
* Organize a decentralized system of care networked with regional brain injury research centers to ensure accessibility to appropriate care and inform TBI survivorsand their families about the availability of such services and facilities.
* Study and document the financial issues relevant to patient and family services, societal cost, and the related economic impact of TBI.
The task force recommended that the following issues be addressed in implementing the national strategy:
A. Primary Prevention
A1. Developing behavioral and environmental interventions aimed at reducing the frequency of severity of TBI.
A2. Encouraging the use of both innovative and proven model prevention programs with provisions to evaluate their results.
A3. Encouraging activities that minimize brain injury risk in athletics and stimulate the use of helmets (or other head protective device) by boxers, bicyclists, motorcyclists, and other high-risk groups.
A4. Evaluating existing societal barriers to the effective implementation of prevention strategies.
A5. Improving community-level access to existing database systems to assist in designing and developing prevention programs.
B. Clinical and Community Service Settings
B1. Enhancing the provision of emergency services through training, improved communications, and availability of rapid transportation of the injured.
B2. Ensuring adequate geographical distribution of local acute care trauma facilities.
B3. Encouraging the continuing review of standards of service for TBI clinical care and rehabilitation by appropriate public and private organizations.
B4. Emphasizing outpatient rather than inpatient services for noncritical care and retying on outpatient services at the local level.
B5. Encouraging the use of “care manager” systems that operate throughout all stages of care, from acute care through community reentry.
B6. Focusing in the ultimate goal of independent function in the Community, including training in problem solving and incorporating proven behavior and educational therapies.
B7. Encouraging appropriate local and state agencies to mount special efforts to provide: (a) counseling for TBI survivors and their families; (b) supportive resources such as day care: (c) vocational counseling and training; and (d) specialized treatment for concomitant mental health, alcohol, or substance abuse problems.
B8. Utilizing for TBI care appropriate mental health, mental retardation, and special education facilities and programs.
B9. Facilitating community reentry by the provision of transitional and supervised residential facilities and programs. For those TBI survivors whose recovery is delayed or incomplete, a wide range of residential settings is needed, from skilled nursing units to domiciliaries and semi-independent group living facilities.
C. Mild Brain Injury
C1. Defining anatomic, physiologic, and behavioral criteria for measuring the severity of mild brian injury.
C2. Encouraging academic and progessional instititions to include in primary and continuing eduction programs for healthcare providers the recognition and management of muld brain injuries. Encouraging the inclusion of mild brian injury management in community-based TBI educational programs.
C3. Stimulating high-risk industries and union groups to establish model acute and subacute management programs for workers recovering from mild brain injury.
C4. Developing early followup and intervention programs for patients and family members that emphasize maintenance of established role relationships and dynamics of family adjustment.
C5. Creating in-service training programs for educators and counselors designed to make them aware that mild brain injuries can result in behavioral changes and learning difficulties which interfere with the activities of daily living.
C6. Increasing the support for research on mild brain injury, particularly in athletics.
D. Finncial Issues
D1. Exploring needed improvements in personal injury insurance for motorists and work-related injuries.
D2. Requiring full health insurance disclosure and including options for long-term or catastrophic care coverage.
D3. Encouraging the use of prospective payments systems.
D4 Encouraging adoption of the “care manager” approach.
D5. Establishing reserves or trust funds for acute and long-term for uninsured accident victims.
D6. Identifying and publicizing financial resources for community services.
D7. Fostering insurance industry efforts to reward safe practices among policyholders and publicizing the results.
D8. Supporting legislation to allow for automatic release of accident insurance funds for acute and long-term trauma care, independent of the tort systems. Exploring the liability issues surrounding trauma incidents.
E. Training and Education
E1. Encouraging and funding training programs in TBI research, clinical care, and rehabilitation.
E2. Incorporating model programs for TBI care in the training and accreditation of paramedics, police and firefighters.
E3. Enhancing public and professional awareness of TBI.
F. Public Health Surveillance
F1. Initiating field investigations of the incidence and prevalence of TBI.
F2. Improving the coding of TBI in existing database systems.
F3. Conducting population-based epidemiologic studies to identify the risk factors associated with TBI and to better identify causative factors that are amenable to intervention.
F4. Fostering the development of model community and state surveillance of TBI, drawing on public health, clinical care, and rehanilitation perspectives and expertise.
F5. Encouraging the use of the existing and well-functioning National Library of Medicine MEDLINE database for retrieval of basic and clinical research information on TBI. Establishing clinical and rehabilitation care directories on a regional basis linked to regional networks.
G. Research Priorities
G. Elucidating the biomechanics of brain injury.
G2. Defining the molecular and cellular characteristics of primary and secondary injury to the brain and their relation to outcome.
G3. Defining the molecular and cellular characteristics that lead to acute and prolonged coma and developing improved experimental brain injury models.
G4. Seeking and developing improved experimental brain injury models.
G5. Developing new methods and modalities for more effective measurement of diagnosis, decree of injury, post-injury monitoring, and prognostic assessment of brian injury for the acute and prolonged phases of care.
G6. Developing, modifying, and evaluating therapies that: (a) retard, prevent, or reverse brain damage after acute brain injury; (b) arrest further detrioration during the subacute phase; and (c) provide for restitution of function for patients with long-term injury.
G7. Integrating clinical brain injury research into clinical care settings.
G8. Addressing informed consent issues in the management of traumatic brian injured patients who cannot provide consent.
G9. Conducting additional research on TBI rehabilitation and habilitation, using modern methods of experimental design.
G10. Establishing and developing an understanding of the dysfunctional behavioral, cognitive, and emotional responses and sequelae of brain injury.
G11. Conducting research on community service issues of TBI with an emphasis on progressive rehabilitation, independent living, and family participation and support.
In the fall of 1989, an appropriation from Congress designated that $15 million be allocated from fiscal year 1990 funds to provide “one-time start-up cost for projects designed to initiate a system of regional (multistate) comprehensive head injury rehanilitation and prevention centers.” The Federal Register, December 27, 1989 [54(247): 53175. 1989], contained a request for proposals (RFP) to initiate the competition. Funding of these centers was administered by the Rehabilitation Services Administration (RSA), U.S. Department of Education. Of those institutions/agncies submitting grant applications by the March 12, 1990, deadline, four were selected to establish regional programs for a 4-year period (1990-95):
* The Southwest Regional Brain Injury Rehabilitation and Prevention Ceter is based at The Institute for Rehabilitation and Research (TIRR) in Houston, Texas, and includes Arkansas, Louisiana, New Mexico, Oklahoma, and Texas (RSA Region VI). Project Period: October 15, 1990, through October 14, 1994. Project Director: L. Don Lehmkuhl, Ph.D.
* The Rocky Mountain Regional brain Injury Center is based at the Colorado Rehabilitation Services Office in Denver and includes Colorado, Montana, Northern New Mexico, North Dakota, South Dakota, Wyoming, and Utah (RSA Region VII). Project Period: November 1, 1990, through October 30, 1994. Project Directorz: Sharon Mikrut.
* The Midwest Regional Head Injury Center for Rehabilitation and Prevention is based at the Rehabilitation Institute of Chicago (RIC) and includes Illinois, Indiana, Michigan, Minnesota, Ohio, and Wisconsin (RSA Region V). Project Period: December 1, 1990, through November 30, 1994. Project Director: Henry B. Betts, M.D.
* The Comprehensive Regional Traumatic Brain Injury Rehabilitation and Prevention Center (TBI-Net) is based at Mount Sinai Medical Center in New York City and includes Connecticut, New Jersey, New York, and Puerto Rico (RSA Region II). Project Period: December 1, 1990, through November 30, 1994. Project Director: Wayne A. Gordon, Ph.D.
In January 1992, a second RFP was issued for the purpose of creating two additional regional programs. Of the agencies/institutions submitting grant applications by the April 15, 1992, deadline, those selected were:
* The Southeastern Comprehensive Head Injury Center based at the University of Alabama in Birmingham and includes Alabama, Florida, Kentucky, North Carolina, South Carolina, Tennessee, Georgia, and Mississippi (RSA Region IV). Project Period: November 30, 1992, through November 11, 1995. Project Director: Thomas J. Boll, Ph.D.
* The Ohio Valley Center for Head Injury Prevention and Rehabilitation is based at Ohio State University in Columbus and includes Indiana, Virginia, Ohio, and West Virginia (RSA Region V). Project Period: November 30, 1992, through November 29, 1996. Project Director: John D. Corrigan, Ph.D.
Each of these regional centers has undertaken a series of projects designed to address the following general goals specified in the RFP:(2)
* Improve the quality and number of brain injury prevention programs.
* Develop and implement an outreach program to expand the knowledge and skills of personnel providing services to persons with traumatic brain injury.
* Identify and eliminate barriers to providing effective services.
* Improve the linkages among services and their providers.
* Improve the followup of brain injury survivors.
* Strengthen the involvement of brain injury survivors and families in the regional systems.
The specific strategies being used to achieve these general goals differ from center to center; however, significant sharing of information among centers has been achieved so that unnecessary duplication of development efforts can be avoided. In addition to fact-to-face meetings to project directors twice a year, a regular schedule of conference calls involving staff members from each center is being conducted to share information, discuss common strategies, and set priorities.
The following articles in this special issue summarize some of the projects, activities, and products developed by the RSA Regional Centers. During their relatively short existence, these Regional Centers have become important and effective “change agents” for improving the availability and quality of community-based services for people surviving traumatic brain injury. They are also increasing the number and quality of injury prevention efforts in communities in their region.
(1) The term “brain injury” is used in place of “head injury” and “mild brain injury” is used in place of “minor head injury” to reflect current usage.
(2) Note that not all of the issues cited by the Interagency Head Injury Task Force are reflected in these goals.
COPYRIGHT 1993 U.S. Rehabilitation Services Administration
COPYRIGHT 2004 Gale Group