Conclusions of a national think tank: on issues relevant to community-based employment for survivors of traumatic brain injury.

Nature of the Problem

Community-based employment approaches for people with severe disabilities have drawn considerable attention in the rehabilitation literature in recent years. The widespread promotion and acceptance of these programs with people diagnosed as developmentally disabled and mentally ill have given rise to initiatives investigating the usefulness of similar community employment approaches for people who have survived TBI. Until recently, however, little information was available regarding the feasibility of using community-based employment options, such as transitional or supported employment, with this population. It seemed clear to rehabilitation professionals that sheltered employment and work-adjustment programs were not well accepted by head injured people.

People who sustain a traumatic head injury tend a retain their pre-injury self-concept--they continue to view their skills, abilities and personality characteristics as if they were the same as they were before the injury. it is therefore common for TBI survivors to report that working around people with severe disabilities is discomforting, even though they themselves may exhibit similar problems with physical, psychosocial, cognitive, and behavioral disabilities. Their strong desire to work in integrated community settings, supported by a national movement in this direction for all people with disabilities, has encouraged development of community-integrated work programs for people with TBI.

To meet the need for rehabilitation programming, both private and government funding sources have been used to establish community-based employment programs throughout the nation. As community-based employment programs for TBI survivors have increased, there has been an increased demand to develop programs which share a common language, use standardized assessment approaches and make appropriate use of technology. An apparent societal dilemma developed as advances in medical technology rapidly progressed to the point where many people who a decade earlier likely would have died from their injuries were surviving. As these people began to request rehabilitation services from a service delivery system ill-equipped to understand the resulting disability and which was financially restricted from providing the costly but needed services the magnitude of this problem became more apparent.

Unlike the literature surrounding chronic mental illness, until the past decade there were few vocationally useful materials avaliable on the rehabilitation of people with TBI. People having other disabilities have been able to access services through the vocational rehabilitation system, including the relatively new community-based programs. However, serving people with the unique problems of the TBI survivor presented a new and unusual challenge to most rehabilitation workers because the typical service provider had little experience with, or knowledge of, this disability.

As a science, neuropsychology has come into prominence only within the past one or two decades, while knowledge of the neuropsychological principles of vocational rehabilitation have developed even more recently. The lack of understanding of vocational rehabilitation processes by neuropsychologists and the lack of knowledge of brain-behavior relationships by vocational rehabilitation personnel served to slow the development of comprehensive vocational rehabilitation programs using the knowledge base of neuropsychology and the service resources of vocational rehabilitation.

To further complicate matters, the needs of TBI survivors are likely to vary tremendously; therefore, there is no such thing as a typical TBI survivor. Moreover, a person who has suffered a relatively minor head injury with a brief period of unconsciousness or none at all may exhibit profound difficulties in returning to work, whereas a person with a moderate to severe head injury may make an adequate adjustment and return to employment, depending on the type of injury, time since injury and a host of other variables. Unlike other disabilities, it is impossible to get a general picture of probable rehabilitation needs and potential from a disability diagnosis and specialty report.

The purpose of the Atlanta TBI Think Tank was to provide a forum for distinguished leaders, advocates and consumers in brain trauma rehabilitation to discuss and focus on critical rehabilitation issues. Specifically, the TBI Think Tank was planned to identify, discuss and obtain consensus on important issues in services, employment-related problems, research, and public policy.

Development of a Research Agenda

The Research and Training Center at the University of Wisconsin-Stout and the National Head Injury Foundation (NHIF) began collaborating on development, research, demonstration, and training efforts in 1983. Traumatic brain injury rehabilitation was selected as a priority topic for the Institute on Rehabilitation Issues (IRI) [1] in 1983 and the center, with funds provided by the National Institute on Disability and Rehabilitation Research (NIDRR), brought together leaders from a variety of disciplines to develop a book titled Traumatic Brain Injury Rehabilitation. The book, edited by Paul Bach-Y-Rita, M.D., became a milestone document which discussed the nature and scope of TBI and suggested specific vocational rehabilitation methodologies. [2]

During the preparation of this book, it was apparent that there was a need for research into the types of rehabilitation needs common to people following a traumatic brain injury. Joint studies and activities were undertaken between the center, NHIF and other rehabilitation service systems. Among the activities were a statewide study of causes and needs of TBI survivors and a rural supported employment demonstration project. The statewide study explored issues documented in Traumatic Brain Injury Rehabilitation and led the way for the demonstration project funded by NIDRR. This project, known as the UW-Stout Head Injury Re-entry Project (Project HIRe), examined and demonstrated model approaches to community-based employment for TBI survivors, conducted a think tank on issues relevant to this subject and contributed to the subsequent national conference. The conference theme was developed by a research agenda initiated by the think tank and guided by the National Advisory Committee of Project HIRe. From the development of the think tank agenda through the national conference, all papers to be presented were peer-reviewed to avoid biased or unsubstantiated information from being presented at this critical point in the development of a new branch of an evolving discipline.

The advisory committee's role, in addition to the peer review of papers for both meetings, was to identify issues and to select participants for the national think tank and conference. The seven-person advisory committee included representatives with considerable training and experience in research methodology, clinical and rehabilitation psychology, client advocacy, and clinical experience.

In initial planning meetings, the committee agreed that the state of the art was ill-defined in this emerging discipline and that consensus was needed on which issues to address in the upcoming national forums. Three areas were identified and the committee solicited the participation of people in the professions and from advocacy groups whom they knew to be actively involved in research or problem solving.

The TBI Think Tank

The 1-day think thank, which was held prior to the NHIF annual conference in Atlanta on November 16, 1988, was designed to stimulate creative thinking and problem solving in an open and unrestricted atmosphere. Activities were planned to promote divergent and innovative approaches to the identification of issues and problems facing the TBI survivor entering community-based employment situations. A combination of panel presentations, open discussions and small-group consensus activities were used to identify critical issues in the three topical areas. Panel presentations and discussions in the morning broadly explored the issues, while the three small groups held in the afternoon sought a fuller array of important issues and sought consensus on which issues were most critical.

People who were nationally recognized leaders in the field were selected either to present their points of view in each area or to serve as reactors and participants in subsequent discussions. Peter Griswold, State Director of Rehabilitation, Michigan Rehabilitation Services, moderated the think tank and kept panels and participants on task and on time. Each presenter defined the key issues in his or her topic area, presented an overview of what was known, discussed what needed to be done to attack the issue, and attempted to be controversial in order to stimulate group discussion and interactions.

Fifteen panelists presented position papers which explored topical areas assigned to them by the Advisory Committee to incite discussion. Following each panel the full think tank contingency was asked to react and comment. Each group participant was then assigned to one of the three topic areas on the basis of his or her primary interests. These groups explored the issues and problems identified in the panel presentations and compiled a list of priority issues. A variation of a Delphi-type technique was used to gain consensus among group members regarding salient issues and prioritzation of these issues. A large group session concluded the think tank process with each group presenting and defending the issues it identified.

Primary Issues Identified at the

Think Tank

The panelists successfully stimulated high levels of involvement, volatile discussion and productive efforts by participants. In 6 hours, nearly 100 issues of importance were identified through the panel presentations and small groups. The remainder of this article extracts and discusses the 15 global concerns which were identified as "most critical" in the think tank. [3] These concerns are presented in a logical, rather than priority, order followed by a brief description which summarizes the spirit of the discussions.

Vocationally relevant reports. Evaluative reports from all rehabilitation professionals need to be presented in vocationally relevant terms, especially those prepared by the clinical neuropsychologist.

Grass roots program planners, job coaches and employment specialists are frequently unable to understand the technical language involved in voluminous diagnostic reports. It is rarely possible to translate this information efficiently into employment strategies. Ways of expressing background information in functional terms, using agreed upon operational definitions, need to be developed and used by the entire rehabilitation field.

Ecological validity of neuropsychological measures. The validity of neuropsychological assessment indices as they predict specific skill components needs to be investigated. This may require a critical review of the content relevance of neuropsychological tests to specific jobs targeted as a primary goal of individuals.

Research which investigates the psychomotor, cognitive and behavioral correlates of a wide variety of jobs would be useful. Such information could provide clues for what to look for in structuring a worksite to accommodate individual needs. This information could be used as a resource to predict possible problems which may need to be remediated or compensated for at the worksite. The issue was raised that it may be of more value to have a neurospychologist assess the job goal before assessing the person in order to determine which aspects of the job may be tempered by neuropsychological problems.

Productivity measurement. Improved definitions of employment productivity need to be developed.

Employment productivity needs to be considered in reference to at least three factors--current abilities, productivity in relation to past abilities and potential productivity (i.e., potential for future work and employment mobility). Criteria for rehabilitation program success should consider all three sources of productivity when reporting outcome statistics rather than simply considering whether or not the person is working.

Meaningful outcome criteria. Appropriate outcome criteria need to be defined in order to establish reasonable integration goals for people with head injury. These criteria must consider both what constitutes meaningful work activity and what type of work would be a reasonable goal.

Independent competitive employment may not be a reasonable goal for all brain injured people. There seems to be controversy over whether or not supported employment, volunteer work, sheltered employment, and day activities are reasonable goals and which of these activities would represent time-limited transitional program options or stepping stones to other goals. Descriptions of eventual vocational outcomes, as well as criteria for suitable program participants, need to be developed and made available to families and care-givers. Since this is quite controversial among providers and consumers, some consensus must be developed before standards can be proposed for the field.

Measuring quality of placement. Measures for assessing the quality of a placement in terms of degree of community integration, job satisfaction and opportunity for interacting with non-disabled peers need to be developed.

In addition to the typical employment information collected following a job placement, measures which document the quality of life of people placed into community-based jobs are also needed. In some cases, the opportunity to interact with others and satisfaction with the work may be as important to continued employment and emotional well-being as a good paycheck. Analysis of these factors may be valuable for estimating the extent and importance of job maintenance training or support.

Direct access to rehabilitation services needs to be developed. Mechanisms which support long-term followup need to be defined and models which include alternative approaches to a central referal point for planning and funding of individual cases need to be devised, studied and demonstrated.

Vocational rehabilitation planning with many TBI survivors is complicated by problems associated with the identification of long-term funding sources for on and off job supports. State and county regulations vary considerably and states need to be encouraged to explore programs which streamline the referral process by using a single point of entry for head injury rehabilitation services. Presently, family members and head injury survivors often need to fend for themselves as they seek sources of support for their vocational, medical and psychological rehabilitation, each of which requires separate applications and entry requirements.

Moderator variables. The impact of moderator variables on social, academic and vocational outcomes needs to be investigated.

Certain variables seem to moderate outcomes of social, academic and work activities. Regardless of other circumstances, factors such as substance abuse, family support and pre-injury personality characteristics seem to significantly moderate eventual outcomes. The impact of such moderator variables need to be studied and reported in the literature.

Syndrome-based strategies. Research is needed which identifies possible syndromes following a TBI and how effectively persons with those syndromes respond to clinical and community-based treatment approaches or models.

People with certain constellations of deficits and disablements following a traumatic brain injury may be far less likely to benefit from treatment or rehabilitation programs than people with other dissimilar syndromes. The development of a means of assessing "what works for whom" is an important research consideration.

Team interaction models. Models of team interaction need to be demonstrated which define how the head injured person, the family, rehabilitation personnel, and employers can work together to foster and sustain community-based employment.

Depending on the resulting disability, community resources and family structure, rehabilitation teams can be constituted to optimize community integration. Models for organizing these teams need to be designed, studied and documented so that new programs can have various models and approaches to follow in organizing the resources necessary for community-based rehabilitation. This aspect of rehabilitation may be one of the most important contributors to vocational adjustment than any other single factor; however, studies which investigate team interaction models are lacking in the literature.

Necessary support systems. Support systems necessary to maintain people with head injuriesin the community and on a job need to be studied in order to estimate rehabilitation service needs, duration of support needs and costs associated with these programs and services.

In addition to the expenses associated with bringing a person to the point of placement onto a job, systems of long-term support, treatment and case management need to be delineated. Details suggesting necessary personnel, facilities and mechanisms for responding to long-term services need to be studied and reported in the literature as proposed program guidelines. These guidelines could provide communities which are planning comunity re-entry programs with a "blue print" of the necessary services and their associated costs as a guide for developing local programs.

Compensatory aids. Investigations are needed to examine and report on the functional utility of compensatory aids that will foster community-based employment opportunities.

As more is learned about the common cognitive deficits associated with head injury, approaches for compensating for problems encountered on the job are becoming more commonplace. In much the same way that counting boards, go/no-go gauges and job simplification procedures were used with developmentally disabled people, orthotic devices and compensatory strategies are also being developed which are specific to the needs of head injured people. Funding of research and development in this area could promote a more rapid improvement and application of technology to job and community integration.

Disincentive to community-based rehabilitation. Factors that serve as disincentives to vocational rehabilitation programs need to be defined and studied so that solutions can be developed.

A variety of disincentives to employment exist which may interfere with vocational rehabilitation. These may include:

* impending litigation and potential loss of worker's compensation or social security benefits; and

* a client's fear of failure, reluctance to try something new and unwillingness to accept a job that is less than what the client believes is his or her potential for.

Procedures for identifying possible disincentives to work and for dealing with them is needed.

Patterns of necessary employment supports. Typical patterns of employment supports (types, frequency and amount) needed to maintain employment under different community-based models need to be determined.

What typically is included as an employment support must be identified and operationally defined before comparable data across community-based employment programs can be acquired. Such information is essential for determining staffing needs and resource allocation. The amount and type of initial employment support may be a good predictor of the best candidates for transitional or independent competitive employment.

Pre-placement skills and prerequisites. Investigations into which skills are necessary prerequisites to vocational placement are needed.

Controversy abounds as to whether job readiness skills should be taught in the environment in which they will be used or whether pre-placement and job readiness training can be a part of a cognitive rehabilitation program. Guidelines are needed which suggest the types of pre-employment skills necessary before a community-based or sheltered employment program is initiated.

Training for practitioners. Training for all levels of service providers and family members is an essential requisite of future success.

Both preservice and inservice training for professionals in disciplines relevant to vocational rehabilitation (i.e., medical, psychological, vocational, education) are desperately needed. Programs where job coaches, rehabilitation case managers, counselors, and employment training specialists can acquire basic skills necessary to competently perform their jobs are especially needed. Similar programs are also essential for parents, advocates and employers.

Summary and Conclusions

As the critical issues derived from the TBI Think Tank are examined, two underlying needs can be extracted. First, there is a need for effective community-based models to the demonstrated and detailed for general dissemination. Second, public policy needs to be established to provide leadership in the development of programs of research, service and education. Most, if not all, of the identified critical issues address different sides of a general need to define, demonstrate and document effective community-based rehabilitation models which can be used by others as they attempt to meet the needs of people who have experienced a brain injury. For such models to be meaningful, they must take into account the wide individual differences among TBI survivors and, consequently, the variety of potential rehabilitation needs.

Furthermore, public policy at the federal, state and local levels must be developed to guide the evolutions of new programs and services. Much of the discussion at the think tank spoke to the need to have legislation and regulations in place to assure that both the acute and ongoing vocational rehabilitation needs of people with traumatic brain injury are adequately addressed in their communities. Public policy must address issues related to early and ready access to medical and vocational rehabilitation servuces for brainnjured people and long-term funding for services in appropriate community-based settings. Public policy must also provide support for research and development of the assessment, planning, technology, and program approaches, as well as for inservice and preservice training of medical, rehabilitation and employment personnel. Finally, an agenda to achieve such public policy should include advocates, consumers, employers, and professionals. A primary goal of public policy should be to educate both the American public and legislators about the extent, impact and manner of need among this growing segment of Americans with disabilities.

The development of effective community-based treatment strategies for the vocational rehabilitation of people with traumatic brain injury is a difficult task, to say the least. The wide variations in individual consequences of traumatic brain injury and, until recently, the novelty of people surviving traumatic brain injury has brought consumers, advocates and practitioners to question what vocational rehabilitation is about and to search for how and what it can accomplish on their behalf. The wide range and very fundamental nature of the critical issues identified at the Atlanta TBI Think Tank is a testimony to the infancy of our knowledge of brain trauma and how differently it affects different people and their potential for work and involvement in society following injury. The subsequent article on the National Conference, which focuses on the issues defined by the think tank, will discuss how educators, practitioners, public policy makers, and consumers have begun to address the issues identified in this article.

References

(1) Three topics are identified annually by the Council of State Administrators of Vocational Rehabilitation, the Rehabilitation Services Administration and the National Institute on Disability and Rehabilitation Research. The Research and Training Centers at UW-Stout and Arkansas sponsor study groups which develop a training document of relevance to the state-federal program.

(2) This IRI document has had numerous reprints. It is currently being rewritten through the UW-Stout RRTC and was scheduled for release in June 1990. See Corthell, D. (Ed.). Vocational Rehabilitation and Traumatic Brain Injury. Menomonie, WI, Research and Training Center, June 1990.

(3) See the chapter, "Unresolved Issues in Traumatic Brain Injury Rehabilitation" by Menz and Thomas (1990), for a detailed summary of all issues of importance for assessment, model and public policy identified at the think tank.

Bibliography 

[1] Corthell, D., & Thayer, R. Traumatic brain injury rehabilitation, Menomonie, WI: Institute on Rehabilitation Issues, Research and Training Center, University of Wisconsin-Stout, 1983.

[2] Corthell, D. (Ed.). Vocational rehabilitation and traumatic brain injury, Menomonie, WI: Research and Training Center, University of Wisconsin-Stout, 1990.

[3] Menz, F. E., & Thomas, D. Unresolved issues in traumatic brain injury rehabilitation. In Corthell, D. (Ed.), Vocational rehabilitation and traumatic brain injury, Menomonie, WI: Research and Training Center, University of Wisconsin-Stout, 1990.

[4] Thomas, D., & Menz, F. Think tank on issues relevant to community-based employment for survivors of traumatic brain injury, Menomonie, WI: Research and Training Center, University of Wisconsin-Stout, 1989.

Dr. Thomas is a research scientist and Dr. Menz is Research Director at the Research and Training Center, University of Wisconsin-Stout.