Why is this booklet needed?
In this manual, we have tried to pull together in one place diverse insights into the vocational rehabilitation of individuals with TBI. We believe that many resources and innovations can be brought to the complex task of helping people who have experienced brain injuries enter or reenter the world of work. We believe that much is to be gained in our sharing ideas that have worked for us. At minimum, the reading of this manual should help all who work in the vocational rehabilitation arena obtain a few more ideas for their tool kit. We most urgently want to ‘sell’ the idea of networking — a sharing of responsibility, a pooling of resources, a gathering-place for problem solving — as an alternative to the vocational rehabilitation worker’s taking too much on his or her own shoulders when trying to help the person with a brain injury define and reach a vocational goal.
What is traumatic brain injury (TBI)?
Traumatic brain injury (TBI) refers to damage or destruction of brain tissue due to a blow to the head, such as occurs in an assault, a car accident, a gunshot wound, a fall or the like. The damage associated with the two types of injury that occur (closed head and open head injury) is described below.
In closed head injury, damage occurs because the blow to the person’s head whips it forward and back or from side to side, causing the brain to collide at high velocity with the bony skull in which it is housed. This jarring bruises brain tissue and tears blood vessels, particularly where the inside surface of the skull is rough and uneven; damage occurs at (and sometimes opposite) the point of impact. Thus, specific areas of the brain — most often the frontal and temporal lobes — are damaged because of this harsh shaking/rotating of the gelatinous brain tissue within its jagged casing. This localized damage often can be detected through MRI and CAT scans.
The rapid movement of the brain can also stretch and injure neuronal axons — the long threadlike arms of nerve cells in the brain that link cells to one another and that link various parts of the brain to each other. This diffuse axonal injury interrupts functional communication within and between various brain regions. However, this type of diffuse damage cannot be detected through currently available imaging technology.
In sum, after a closed head injury, damage can occur either in specific brain areas (due to bruising and bleeding) and/or can be diffused throughout the brain (due to stretched or destroyed axons).
Open head injuries, the second type of TBI, occur when the skull is penetrated, for example by a bullet. Damage following open head injuries usually is focal, not diffuse. The effects on the individual's functioning (see page 2) are likely to be more limited because damage is not spread throughout the brain.
Typically with TBI, loss of consciousness (LOC) occurs — for anywhere from a few minutes to several months. Sometimes LOC does not occur at all, and only a sense of confusion, dizziness or the like signifies the brain’s immediate reaction to trauma.
What are the effects of TBI on the person's life?
A wide range of cognitive, physical and behavioral impairments may follow TBI. Basic sensory and motor functions can be affected, as well as the functioning of hormonal, endocrine and other body systems. Cognitively, individuals with TBI may have very subtle to major impairments in their perception, language, attention, concentration, learning and memory. They may also have difficulty in thinking abstractly and in planning/organizing themselves and their worlds. The injury can modify their affective behavior and overt behavioral patterns. In sum, the direct effects of TBI can be complex and diverse within any one individual and will vary greatly from one injured person to the next.
Some individuals who have experienced a TBI are highly aware of these effects; others may be surprisingly unaware, despite feedback from others.
Also, for any specific person the severity of the injury and the resulting direct effects may in no way predict the amount of disruption in his/her life. This follows because each of us draws differentially on differing parts of our brains. A severe frontal injury may have less impact on an agricultural worker’s job performance than a so-called ‘mild’ frontal injury would have on a physicist’s work.
An example will be used here to illustrate several of these points:
Joan, a senior in college, was struck by a car and suffered a head injury. Following a few hours LOC and a two-week hospitalization, she was discharged as “recovered.” Returning to college, she found that she had to spend an inordinate amount of time studying to complete her class assignments. After graduation, she attended law school and passed the bar examination. A bright student before injury, afterward Joan succeeded academically by devoting many more hours than most students to studying. She attributed the need for so much homework to her continuing anxiety following the accident.
When she began to work as an attorney, the sequelae of Joan’s TBI further manifested themselves, although she did not connect her problems to the injury. She reported that she was having trouble organizing, reading briefs and following conversations; she felt irritable, was hypersensitive to noise and took too much time completing work assignments. She felt her work was too stressful. Her law firm asked her to resign. Joan similarly failed in several subsequent positions with law firms and finally decided to pursue a lower level position outside law while deciding a future course of action. However, during her interviews for positions below her educational qualifications, she reported that she would argue with interviewers — to justify her application. She eventually found a job that she could handle, as a part-time receptionist in a doctor’s office.
Realizing, finally, that something was wrong, Joan sought help. Through a series of referrals, she found a neuropsychologist, who discovered that, although her intellectual abilities were intact and her conceptual skills were excellent, she had “cognitive deficits that included decreased speed of visual information processing, visual scanning and impaired verbal memory. These were not severe, but taken together these deficits significantly impeded her career progress.” Based on commonly used criteria, her brain injury was considered “mild,” camouflaging significant sequelae. She was now reporting that she was feeling constantly angry and out of control; she was having trouble coping with travel, with crowds and with daily tasks. Cognitive remediation, counseling and vocational rehabilitation were introduced.
While continuing to succeed in her part-time position, she considered this only a short-term plan. It was a dilemma for her to work at a nonprofessional level, which was at odds with her sense of self. This motivated her to explore vocational options. Working with a vocational rehabilitation counselor, she reviewed her areas of interest, and, where additional training was needed, she examined training curricula to decide if they suited her abilities and willingness to commit to course work. She decided, at that point — seven years post-injury — to postpone a career change: to allow her time to receive cognitive remediation and to achieve some successes in a behavioral management program.
Joan continued her remediation over the course of the next two years, but has now stopped. She is still employed in her part-time job, and now has decided to resume her vocational pursuit, with occupational therapy as her chosen profession. She feels she can handle the training, and, if she succeeds, she will find the status and job opportunities she seeks.
This example illustrates points previously made and demonstrates some considerations that are important in vocational rehabilitation of people with TBI:
- Services are likely to be needed over lengthy periods. People with TBI are commonly not quickly ‘in and out’.
- The consumer and counselor, in formulating an acceptable plan, need to address pre-injury life style, interests, abilities and goals.
- Typically, starts and stops, not a nonstop progression, will characterize the course of rehabilitation.
- For a variety of reasons, the time frame for achieving specific markers during rehabilitation needs to be kept loose; rigid deadlines are not likely to work to the advantage of the individual with TBI.
- The need of each consumer of VR services to be empowered to make choices that will become his or her customized rehabilitation plan is multiplied in importance for the person with TBI.
How common is TBI, and who is the typical person with TBI?
The incidence of TBI is high, but just how high is not known, primarily for two reasons: (1) many head injuries are not included in official statistics, and (2) definitions of TBI and of disability vary across the respective groups and agencies that track TBI incidence. Estimates have been made as high as three million injuries a year, with 750,000 persons being hospitalized, 100,000 dying and 90,000 left permanently disabled. However, what is clear from any of the estimates of incidence is that many people with injuries do not enter the health care system, because many such injuries are labeled incorrectly or are ignored. We can understand this if we consider that if LOC does not occur or is very brief, the injured person may never go to a hospital or see a doctor. And, with this type of TBI, called ‘minor’ TBI, often the injured person does not tie the dysfunctional consequences of TBI to the injury. No one had told them what to expect even if they did get medical attention. Thus, the individual may have all the symptoms of TBI and not know the cause of his or her symptoms.
The typical person with TBI historically has been depicted as a young male, under the age of 24. The ratio of males to females has been estimated at 4:1. These data may adequately describe people with head injuries who have been hospitalized. However, newer data based on interviewing people with head injuries living in the community suggest that the ratio of head injured males to females in this group is closer to 3:2. This may be the case partly because females are more likely to receive blows to the head, for example because of domestic violence, that are not viewed as serious enough to send them to the hospital, but the cumulative effects lead eventually to serious consequences in day-to-day functioning.
The significance of this is that many people have experienced a TBI, but they do not necessarily tie problems in living to LOC or TBI. However, where difficulties are found to occur in cognitive, behavioral, affective and social functioning, TBI should be suspected. And, remember that TBI is not rare, it may never have been diagnosed, it may be very debilitating, but it can be diagnosed and worked with. Also to be kept in mind is that myths about the ‘typical’ person with brain injury may prevent us from recognizing actual brain injury when we see it in front of us.
What are the major barriers to successful vocational outcome?
For the person with TBI, four types of barriers to vocational success need to be considered: (1) the complexities and characteristics of the injury itself,
(2) services — not available or inappropriate if available, (3) restraints within the community and society, and (4) potential loss of benefits associated with vocational placement.
Characteristics of the Injury. Essentially, the challenge for vocational rehabilitation rests with individuals with mild and moderate injuries; those with severe injuries are often unable to pursue a vocational course at all after injury. The complexities of injury can only be briefly outlined here, but the import for the VR counselor is that, with the person with TBI, a ‘cookbook’ approach will seldom be useful, as it assumes that individuals with TBI are more or less alike. In fact, no two individuals with a brain injury will have had the same history, interests and abilities before injury and will not display the same post-injury deficits or implications for daily living.
For many individuals with moderate TBI, the brain injury leads to reduced functioning; however, areas of strength and interests also define the person, as does his or her social context. In evaluation, goal setting and treatment, the counselor must creatively attend to these complexities. Artistry, as much as experience, will aid the counselor, as will some of the innovative tools and adaptations described herein.
For the person with a mild injury, deficits may be less than with a moderate injury. However, significant difficulties may arise because of the often lengthy lag between injury and the point when the individual recognizes that the injury is the cause of functional problems. Months, sometimes years, go by before the problem is correctly diagnosed and appropriate treatment introduced. By then, a “psychological overlay” may have emerged, as the individual’s difficulties in daily life weave their effects throughout his or her social and vocational worlds.
Services. People with disabilities rely upon the state-federal VR system to help them become employed. Aspects of this system, along with the lack of other services and programs, may inhibit successful vocational outcomes for people with TBI. More specifically:
- The VR system is a time-limited service provider that does not meet the long-term needs of many individuals with TBI.
- Large case loads prevent concentrated delivery of services and discourage the pursuit and adoption of innovative approaches to service.
- Counselors are not specifically trained to be ‘experts’ in traumatic brain injury and effective approaches to rehabilitation.
- Delayed referral to VR results in delayed services, but too early a referral may result in a determination of ineligibility for services. Timeliness of referral is fundamental with this disability group.
- Vocational programs adapted to the special needs of people with TBI are rare. Long-term supported employment programs are also absent within many geographic regions.
Community and Society. Within the individual’s immediate and societal worlds, many barriers to successful vocational outcomes exist, for example, inadequate housing, inaccessible transportation and lack of social supports. Within the service system, no coordinated system of care for community reentry exists. The absence of community resource linkages to provide pre- and post-vocational support is also clearly problematic.
Loss of Benefits. Because some benefits will be withdrawn under certain circumstances when the individual with TBI earns money, the risk of losing benefits can inhibit vocational progress. To minimize this disincentive, the individual must evaluate his or her ‘portfolio’ of benefits to determine what will be affected and what protected, and under what circumstances. For example, Social Security Work Incentive Programs, particularly PASS (Plan to Achieve Self Support) and IRWE (Impairment-Related Work Expenses), have the potential to assist people with disabilities secure a variety of necessary supports to obtain and maintain employment (e.g., job coaches, transportation, equipment, work-site modifications, training). Knowledge of these incentives and how to help in applying for them is part of the essential arsenal of VR counselors (see Appendix I). Also, in New York State, funds have become available through a TBI-Medicaid waiver to help severely disabled individuals with TBI to receive services in the community, avoiding placement in nursing facilities (see Appendix II).
What does the record say about vocational success with this group?
What do we know about the impact of TBI on return to work? Generally, studies have shown that TBI compromises post-injury employment status on many dimensions: Fewer people work post-injury, and those who do work do so for fewer hours, earn less money and enjoy fewer employee benefits.1-7
How can one tell if an individual with TBI is a good risk for vocational rehabilitation services? Research cannot tell us who definitely will or will not reach their vocational goals. However, we do know some variables associated with success (but certainly do not guarantee it). For example, many studies1-3,6 have found that those with a more substantial career path or higher employment status pre-injury have a greater likelihood of returning to work after injury. However, a study done by O’Neill and colleagues5 found the opposite. This inconsistency is probably due to varying subgroups of people with TBI being sampled into respective studies: Because the O’Neill study5 selected participants solely from those who had had contact with a VR agency, they eliminated individuals with TBI who had returned to work post-injury without requiring any formal VR assistance.
Follow-up studies have also shown consistently that severity of injury (based on indicators such as time unconscious or numbers of days hospitalized) and severity of impairment (in terms of mobility, cognitive functioning and behavioral/emotional performance) are inversely related to level of involvement in the labor market. Those ‘hardest hit’ are least likely to work. One fact that ‘softens’ this finding is that the amount of time since injury has been found correlated positively with attachment to the labor market;2,5 thus, time promotes healing, recovery of psychosocial strengths and consequent return to work — for individuals at all levels of severity.
Two other factors have been consistently shown to be associated with return to work: age and education. Those who are younger and have more education have a greater likelihood of returning to work post injury. One of the better studies2 used all of the variables discussed above (e.g., time since injury, education, severity of impairment) in predicting return to work. Administrators may find the formula they developed useful in helping allocate limited resources and services.
What must be kept in mind is that data such as these tell us about tendencies within groups of people. None of this can predict what will happen to any single member of that group. For example, in the O’Neill et al. study5 although most of those who had been in coma for a long time did not return to work, 12% of these most severely injured people were employed at least part-time at follow-up. Thus, if 100 severely injured people presented themselves as candidates for vocational rehabilitation, and, if all of them were rejected as “too risky,” this rejection would be wrong, the data suggest, for 12 members of this group.
How well does the state-federal VR system address the vocational rehabilitation needs of people with TBI? The study by O’Neill and his colleagues5 provides some sense of “who” the VR system serves. In looking at VR populations in the New York and Connecticut state agencies over three years (1991 - 1993), this study revealed that people with TBI constitute 1.2% and 3.1% of the average caseload in the respective states. Is this good? The rates of acceptance for people with TBI show that, although they were a small percentage of the caseload, they were accepted at a slightly higher rate than the general population of all applicants for VR services. Thus, for example, in New York, 77% of all VR applicants were accepted for services, while 83% of those with TBI were accepted.
In terms of numbers rehabilitated, VR agencies are succeeding with only a few people with TBI. Thus, 413 individuals with TBI were closed “rehabilitated” in New York over the three years, with 137 "26 closures" in Connecticut. This is a small number, given estimates of the TBI populations in these states. However, the rate of rehabilitation (successful closures vs. all closures) was about the same for individuals with TBI as for all clients. Thus, in New York 57% of individuals with TBI were 26 closures vs. 55% of all clients, while the respective percentages were 44% vs. 40% in Connecticut.
Whether one looks at numbers of people with TBI in the total caseload or numbers rehabilitated, VR agencies in these two states are doing about the same for this disability group as for their total caseloads. Services may not be reaching sufficient numbers, but the data suggest that this is not a matter of discrimination. Instead, it is more likely that insufficient resources within these agencies are at the root of the problem.
When one looks at the impact of VR services on hours worked per week and average earnings, the O’Neill study shows that both of these important indicators increased dramatically for individuals with TBI who were successfully 'closed.' In New York, individuals with TBI who were closed rehabilitated increased their working hours from 3 at referral to 30 at closure. Their earnings increased from $16 per week to $174. In Connecticut, hours worked increased from 5 to 30 at closure, with earnings increasing from $27 to $201.
In looking at the jobs obtained by individuals with TBI in the VR system, O'Neill 5 found that a large portion of the 26 closures were in clerical/sales or service positions, which reflects employment opportunities in the region. Specifically, 44% of consumers with TBI finding jobs in New York went into these two employment categories, with 60% in Connecticut. Professional/technical/managerial positions also drew large numbers -- 12% of clients with TBI in each state. The study also found that New York State VR counselors more often used sheltered workshops for placements, compared to those in Connecticut (23% vs. 3%). These proportions remained relatively constant over the three years surveyed. However, in both states a trend toward increasing homemaker closures was found. Again, New York had more of this type of closure (8% vs. 3%), but the percentage was increasing in both states from 1991 to 1993.
What specific methods or techniques produce better outcomes within the VR context? Studies show that both the VR planning process itself and the mix of services provided to individuals with TBI can affect outcome. For example, the O’Neill study shows that those individuals with TBI who were more aware of steps in the VR process, particularly being aware of the Individualized Written Rehabilitation Plan, were more likely to be employed after discharge. Thus, the quality of the individual’s involvement with a state VR agency made a difference to the vocational outcome (participants in this part of the study were 77 individuals with TBI who had applied to or availed themselves of VR services in New York or Connecticut in 1992-1993 and were willing to be interviewed). This underscores the need for consumer empowerment through active participation in the VR process, a service direction strengthened in the 1994 Amendments to the Rehabilitation Act of 19738.
Studies have also raised the question of the services or mix of services that work. In sum, vocational interventions (i.e., supported employment9-11, enhanced vocational placement services12) were more successful in helping individuals with TBI return to work than was neuropsychological treatment13; the latter may be necessary for some but is likely to be insufficient on its own. Also, in the O’Neill study5, those who reported receiving services for productivity while clients of a VR agency were more likely to be engaged in the labor market after being 'closed'.
What approaches can be used to assist people withe TBI achieve their vocational goals?
Section II (pp. 8 - 12) recommends adaptations of traditional approaches used within vocational rehabilitation, to best benefit the population of individuals with TBI. Section III (pp. 12 - 20) describes innovative methods, all of which draw upon resources within community networks and speak to the power of networking in helping people with TBI reach vocational goals.
From TBI-Net, the Mount Sinai Medical Center Department of Rehabilitation Medicine. Used with permission. www.mssm.edu/tbicentral