- How Big of a Problem is Post-TBI Failure to RTW?
- What Do We Know from Current Research About RTW After TBI?
- What Can We Conclude From Current Research?
- What are the Implications of Current Research?
How Often Does TBI Happen?
Returning to work, school or being a homemaker is a major problem for many people with traumatic brain injury (TBI). (This TBI Research Review does not distinguish between those who did not work at the time of injury and those who did, although important differences characterize these two groups.) The failure to return to productive roles comes at great economic and personal costs to people with TBI, to their families and to society. The costs are great because the number of people with TBI is huge, estimated at more than five million individuals in the U.S.1
TBI is often an injury of youth, as incidence rates peak between ages 16 and 255, leading to many years of living with disability. This adds to the tremendous cost, which Thurman6 estimates at $56 billion yearly in the United States. Much of this is due to lost economic productivity. Failure to return to work (RTW) after TBI is the focus of this issue of TBI Research Review.
How Big of a Problem is Post-TBI Failure to RTW
Whiteneck and colleagues7, analyzing data from the Colorado TBI registry, which includes all people hospitalized with TBI in that state, found that about 50 percent of those who were severely injured failed to RTW at one-year post injury. Twenty percent of those with so-called mild injuries were unemployed. Other studies vary in their estimates. This variation is due to differing definitions of "successful" RTW, how long after injury the outcomes are studied and the severity of injury.
Despite study differences, all evidence points to many people with TBI being unable to return to the vocational roles they had established before injury. This has strong implications at the personal level, where research shows lower subjective well-being8 in people who fail to RTW after TBI compared to those who succeed in RTW. Research also shows many people feel they have strong unmet needs in connection with working9. At the societal level, lost wages and increased dependence on governmental and other financial support contributes to the huge yearly cost of TBI. Further, employers face the cost of lowered productivity due to unfilled positions and the cost of hiring and training replacement staff.
What Do We Know from Current Research About RTW After TBI?
A few studies are available that evaluate the effectiveness of efforts to maximize RTW; however, there are many more studies that document the factors associated with, but not necessarily promoting, RTW. The results of systematic reviews and other substantive reviews of this literature on RTW10-13are summarized in this TBI Research Review. Then we review policy implications for researchers, clinicians and policy makers.
Prognostic Studies
Most reports of research on post-TBI vocational outcomes seek to identify the personal (and, occasionally, the environmental) characteristics that hinder RTW. These research results are potentially useful in pinpointing who needs the most help, but the results seldom demonstrate the specific nature of the needs.
Many studies reviewed10-13suggest what is obvious: that, other things being equal, people with more challenges in functioning after TBI will have more difficulty in RTW. For example, studies find poorer outcomes for those persons who have more severe injuries, experience fatigue, are dependent on others in their activities of daily living, have transportation challenges, who evidence significant emotional issues and poor neuropsychological functioning, such as problems with memory, sequencing and judgment. Other studies that focus on demographics (such as age, gender and minority status) have generated variable results. In both types of study, however, the correlations between characteristics of the person with TBI (for example, severity of injury or gender) and RTW are quite modest.
In short, while existing research tells us general characteristics of people who are less likely to return to productivity, the research does not tell us whether any specific person with TBI will succeed or fail. At best, the results of prognostic research can define the conditions/ characteristics that should be attended to in developing an array of services to aid RTW. The research results do not, and should not, imply that the person on the negative side of these "predictors" is destined (or even likely) to fail.
Studies Evaluating Service Effectiveness
Effectiveness studies in the past often grossly focused on whether better outcomes were associated with receiving services or not. These "Yes/No" global assessments typically showed that vocational rehabilitation (VR) services help some clients – a not-surprising result. Recent studies that hone in on specific elements or characteristics of service programs have proved to be somewhat more useful.
Before reviewing these findings, some research weaknesses in this area need highlighting, as these weaknesses often undermine the validity of study findings and hinder the comparison of studies focused on the same topic to learn if evidence is consistent across studies:
- While randomized controlled trials (RCT)* comprise the gold standard for judging cause and effect, studies of this type have not been undertaken to evaluate VR services. Thus, because of the weak methodology of most of the studies done (non-RCT), one cannot conclude that a service is effective (or ineffective). For example, any positive results could be due to clients simply receiving a service (any service), due to receiving more attention than they would otherwise or due to being selected from the most capable people with TBI.
- Comparing studies is difficult when "success" is not uniformly defined from study to study. For example, some studies define success as return to "competitive full-time work;" other studies define it as return to "any productive role at any level." Alternatively, success is defined as "maintaining work status" for a specified period.
- Research reports often fail to describe adequately the treatment or service being evaluated, so that, if successful, the service is not easily duplicated elsewhere, for lack of program detail that others can "run with."
- Most studies are unclear about which types of clients fail and which succeed. Studies often do not use statistical methods to control for the impact of certain characteristics, such as severity of injury, on the client's program success. When these methods are not used consistently, comparing results across studies is impossible.
- Most research in this area is conducted with very small samples. Frequently, the degree to which the sample studied represents the full TBI population is not discussed. This is important since only a small fraction of people with TBI seeking or wanting to RTW ever receive VR services.
- Studies are difficult to compare as they may include very different types of people. These include small convenience samples that represent everyone with a TBI who has received rehabilitation services at a particular place; registry-based samples that represent everyone with a TBI hospitalized in a particular geographic region during a specific time; all individuals who have managed to find their way into and complete (successfully or not) a VR program during a certain time; people entered into either "arm" of a study of a specific treatment aimed at improving RTW, and other differences. "Success" means very different things in these varying types of samples.
Given these methodological problems, the reviews of research referred to above10-13have found moderate support for some service elements in aiding RTW:
- Providing VR services early in the rehabilitation process14-16
- Creating a supportive work environment16
- Providing cognitive skills training17-18
- Supplying assistive technology and training in its use19
As for obtaining and maintaining work, supported employment has been found useful14, 20-23, although one study24 did not find this to be the case.
Within the context of state VR agencies, the following elements have been associated with greater probability of RTW:
- On-the-job training25
- Counseling and guidance25
- Job placement services24,26
- Creation of a working alliance with the counselor27
O'Neill and colleagues 28 compared outcomes of community-based teams within VR offices to the outcomes of typical VR services. They found that the former outperformed the latter in achieving RTW, at equivalent costs.
A recent study analyzed state VR agency data (that is, RSA-911 data) on 7,366 persons with TBI who ended services in 2004, either successful in RTW or unsuccessful. This study addressed several criticisms enumerated above. To determine the services associated with successful RTW for VR clients with TBI, Catalano and colleagues24used a "data mining" statistical technique known as CHAID on the RSA-911 data. The data mining took place within groups that were homogeneous on several variables, for example gender, age, race, education and co-occurring conditions such as substance abuse or depression. Clients who succeeded in RTW differed strongly from those who failed. The successful clients:
- Had more federal money spent on their services.
- Spent less time receiving services.
- Received on-the-job training, job readiness training, other training, job search assistance, job placement assistance, on-the-job supports, maintenance, rehabilitation technology or other services.
Individuals with the lowest rates of RTW were receiving disability-related benefits and received only services such as assessment and counseling. However, the interpretation of such findings is unclear. For example, if those who only received assessment services had received more services, would there have been any difference in outcomes? Alternatively, did those who were viewed as "destined to fail no matter what" receive minimal services to avoid "wasting" resources? Catalano's study as well as other studies24,26 suggest that "job placement" is effective in RTW. However, is this simply an artifact, since this service is provided only to those who through other means have been prepared for RTW? Despite the drawback in interpretation, because of the large number of records examined, Catalano's study provides leads about what may be helpful in nurturing RTW and generates specific hypotheses for further study.
What Can We Conclude From Current Research?
- We know that too many people with TBI fail to RTW. In this context, the Catalano study24 reveals a related problem in that relatively few of the many Americans with TBI who have failed in RTW are "graduating" from State-Federal VR services yearly. Thus, VR services are reaching a small minority of people with TBI who might benefit.
- Each study reviewed suggests that one or more elements of VR services are helpful, mostly because people who are exposed to them "get better." With few exceptions, the studies often rely on relatively weak pre-post designs, anecdotal approaches or retrospective data mining. The methods prevent us from knowing that positive "change" in vocational status is due to the services provided.
- Prognostic studies have been less than helpful because many are based on small numbers of study participants. The results are all too often obvious or inconsistent across studies because of differing approaches to studying the interrelationships and interdependencies among predictors.
- The body of research shows that our knowledge is clearly inadequate regarding our effectiveness in attempting to help people with TBI in RTW. We also have no clear idea of just what the problem is in successfully promoting RTW. Thus, to define and evaluate potential solutions to the problem of RTW, we first need to better define the problems that interfere with post-TBI RTW.
What are the Implications of Current Research
Implications for Researchers
The first requirement implied by the current state of research in this area is to better define the causes of post-TBI failure to RTW. For example, the Catalano study suggests that financial "disincentives" play a strong role. If that is correct, we must ask why approaches such as Ticket to Work29 do not work. For example, Do people know of these alternative paths and programs? Although the National Planning Assistance and Outreach Program has provided training and consultation to support better counseling on benefits, Catalano's findings indicate stronger measures are needed. As another example, the prognostic research strongly suggests that people with more cognitive, physical and behavioral challenges succeed less often in RTW. What are the exact reasons for this? Some may say, "The answer is obvious," but to what degree does this problem require "fixing the person" versus "fixing the environment?" It raises the critical question: How can we fit services to the person to achieve success whenever possible? To answer questions like these, we need carefully conceived qualitative studies to better define pathways that people follow in successfully returning to work. We need to document how these pathways differ for those who fail to achieve their productivity goals.
Once we more precisely define "the problem," specific interventions and services to address various parts of the problem need to be developed and evaluated. Clearly, we need a range of approaches to evaluation. In the end, though, we need to back up initial explorations with stronger research designs, including randomized controlled trials (RCTs). In addition, we must not stop with the yes or no answers of an RCT, but also determine the characteristics of those for whom a specific intervention is useful and why it fails those who do not achieve their productivity goals. Additionally, we need to undertake research that will pinpoint the elements that comprise the "active ingredients" of successful treatments30. If we can identify the critical elements, we can better document the program intervention in detailed manuals for easier duplication of successful interventions by others. In short, research needs to add new, more effective tools for service providers. We also need to better evaluate existing tools and try to explain why certain tools fail certain people and what might work better.
Implications for Service Providers
The body of research reviewed does not offer a strong basis for "evidence-based practice" in post-TBI vocational rehabilitation. However, study results do offer some interim "hypotheses" about what helps people after TBI in RTW. The ideas and directions that find "moderate support" in research reviews10-13provide potential directions for service providers in providing appropriate VR services. Catalano and colleagues24note, for example, that although on-the-job training was strongly associated with RTW, most post-TBI VR clients did not receive this service. Until better research reveals which clients are unlikely to benefit, the hypothesis should be that "on-the-job training works."
Service providers across venues should collaborate with the research community to develop new approaches to services for people with TBI and to provide greater access to treatment settings so that better evidence can be developed. This is perhaps an even more important implication of the lack of a sufficient evidence base for post-TBI VR practice. Although this proactive stance by providers is likely to come from administrative and supervisory levels, we need to bring front-line workers into the partnership from the get-go, so that they are more likely to embrace the facility's or agency's participation in research.
Implications for Policy Makers
Strong improvements in public policy are needed with respect to funding VR services to better address the many people with TBI who are not participating in productive activity and who are not accessing the State-Federal VR system. To provide strong advocacy for this stance, individuals with TBI or family members of persons with TBI should be included in the composition of independent commissions and advisory bodies within the public VR system.
Several lines of research suggest that we need to consider carefully what we view as "success" with respect to RTW. First, full-time competitive work at the same level as before injury may be an inappropriate goal for many or most people post TBI. Second, full-time work of any type may be less satisfying than part-time work8,31. Most important, "achieving personal productivity goals" may be a more appropriate definition of success since it accounts for variations due to individual preferences, values and circumstances. This may mean a variety of "outcomes" are incorporated into the "successful" end of the continuum as we redefine success concerning meeting personal goals. For example, working as a volunteer in a disability advocacy organization, working part-time in one's old job, or being self-employed may prove most satisfying. Flexibility in defining "success" should be built into policy that regulates VR funding; more research is needed to document further how success is defined32.
In addition to the results of systematic research, we can draw on testimony from people with TBI and their support network, who with strong voices have communicated their challenges and needs in a variety of venues, including local and national brain injury associations. For example, testimonials from Ohio citizens who had access to TBI specialty counselors indicate their counselors set more realistic RTW goals based on the individual's strengths, were persistent in exploring options, used creative approaches to funding higher education, and identified natural supports in the workplace. This type of input pointing to a promising practice needs to be followed up with systematic research, as suggested above, and funding support for states who are willing to evaluate such practices.
Consumer voices also suggest that inadequate treatment, inadequate rehabilitation and failure to fully prepare the individual and employer contribute to the lack of successful RTW after TBI. Early and repeated job failures add insult to (brain) injury, causing further emotional and psychological harm. Supported employment of sufficient intensity and duration, with the use of job coaches, on-the-job compensatory strategies and work hardening experiences, with ongoing follow up and adaptation, should be the standard until such practices are proven unsuccessful in RTW. Moreover, it is crucial that standards be developed for determination of readiness for VR following medical rehabilitation, since employers are not prepared to provide all the supports and services needed to support RTW following TBI, particularly when the individual has not received appropriate and sufficient medical and vocational rehabilitation.
Most importantly, policy makers must rectify the paucity of research focused on evaluating methods to help people successfully RTW after TBI. Consumer voices tell us repeated that the traditional VR approach of seeking out jobs, filling out applications, modifying a work setting and placing the candidate doesn't work for individuals with TBI. Neither do attempts to return individuals to their previous work environments where their performance is scrutinized by those who are most familiar with their pre-injury skills.
Freud defined the elements in human lives necessary for well-being as work and love. People with TBI clearly are in need of stronger support in helping return them to a standpoint from which they can again participate in both of these defining aspects of a life lived well.
References
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2. National Center for Injury Prevention and Control. (2003). Report to Congress on mild traumatic brain injury in the United States: Steps to prevent a serious public health problem. Atlanta: Centers for Disease Control and Prevention.
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9. Brown, M., & Vandergoot, D. (1998). Quality of life of individuals with traumatic brain injury: Comparison with others living in the community. Journal of Head Trauma Rehabilitation, 13 (4),1-23.
10. Crepeau, F., & Scherzer, P. (1993). Predictors and indicators of work status after traumatic brain injury: a meta-analysis. Neuropsychological Rehabilitation, 3, 5-35.
11. Ownsworth, T., & McKenna, K. (2004). Investigation of factors related to employment outcome following traumatic brain injury: a critical review and conceptual model. Disability and Rehabilitation, 26, 765-784.
12. Gordon, W.A., Zafonte, R., Cicerone, K., Cantor, J., Brown, M., Lombard, L., Goldsmith, R., & Chandna, T. (2006). Traumatic brain injury rehabilitation: state of the science. American Journal of Physical Medicine and Rehabilitation, 85, 343-382.
13. The ERABI Research Group. (undated). Evidence-based review of moderate to severe acquired brain injury. Executive summary. Ontario, Canada: Ontario Neurotrauma Foundation.
14. Malec, J.F., Buffington, A.L., Moessner, A.M., et al. (2000). A medical/vocational case coordination system for persons with brain injury: an evaluation of employment outcomes. Archives of Physical Medicine and Rehabilitation, 81, 1007-1015.
15. Buffington, A.L.F., & Malec, J.F. (1997). The vocational rehabilitation continuum: maximizing outcomes through bridging the gap from hospital to community-based services. Journal of Head Trauma Rehabilitation, 12 (1), 1-13.
16. West, MD. (1995). Aspects of the workplace and return to work for persons with brain injury in supported employment. Brain Injury, 9, 301-313.
17. Parente, R., & Stapleton, M. (1999). Development of a cognitive strategies group for vocational training after traumatic brain injury. NeuroRehabilitation, 13 (1), 13-20.
18. O'Reilly, M.F., Lancioni, G.E., & O'Kane, N. (2000). Using a problem-solving approach to teach social skills to workers with brain injuries in supported employment settings. Journal of Vocational Rehabilitation, 14, 187-194.
19. Gamble, D., & Satcher, J. (2002). Rehabilitation outcomes, expenditures and employment outcomes of individuals with traumatic brain injury. Journal of Applied Rehabilitation Counseling, 33, 41-44.
20. Gamble, D., & Moore, C.L. (2003). The relation between VR services and employment outcomes of individuals with traumatic brain injury. Journal of Rehabilitation, 69, 31-38.
21. Wehman, P., Kregel, J., Keyser-Marcus, L. et al. (2003). Supported employment for persons with traumatic brain injury: a preliminary investigation of long-term follow-up costs and program efficiency. Archives of Physical Medicine and Rehabilitation, 84, 192-196.
22. Wall, J.R., Rosenthal, M., & Niemczura, J.G. (1998). Community-based training after acquired brain injury: preliminary findings. Brain Injury, 12, 215-224.
23. Wehman, P., Kreutzer, J.S., Stonnington, H.H., & Wood, W. (1988). Supported employment for persons with traumatic brain injury: a preliminary report. Journal of Head Trauma Rehabilitation, 3(4), 82-94.
24. Catalano, D., Pereira, A.P., Wu, M.-Y., Ho, H., & Chan, F. (2006). Service patterns related to successful employment outcomes of persons with traumatic brain injury in vocational rehabilitation. NeuroRehabilitation, 21, 279-293.
25. Johnstone, B., Vessell, R., Bounds, T., et al. (2003). Predictors of success for state vocational rehabilitation clients with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 84, 161-167.
26. Bolton, B.F., Bellini, J.L., & Brookings, J.B. (2002). Predicting client employment outcomes from personal history, functional limitations, and rehabilitation services. Rehabilitation Counseling Bulletin, 44, 10-12.
27. Lustig, D.C., Strauser, D.R., Weems, G.H., et al. (2003). Traumatic brain injury and rehabilitation outcomes: Does the working alliance make a difference? Journal of Applied Rehabilitation Counseling, 34, 30-37.
28. O'Neill, J.H., Zuger, R.R., Fields, A., et al. (2004). The Program Without Walls: innovative approach to state agency vocational rehabilitation of persons with traumatic brain injury. Archives of Physical Medicine and Rehabilitation, 85, S68-S72.
29. Campbell, L.R., Yasuda, S., Wiley, K., Miller, L., & Hardy, S. (2006). Benefits planning for individuals with traumatic brain injury: first step on the road to employment. Brain Injury Professional, 3(3), 18-22.
30. Whyte, J., & Hart, T. (2003). It's more than a black box; it's a Russian doll: Defining rehabilitation treatments. American Journal of Physical Medicine and Rehabilitation, 82, 639-652.
31. Pagan, R. (2007). Is part-time work a good or bad opportunity of people with disabilities? A European analysis. Disability and Rehabilitation, 29, 1-10.
32. Levack, W., McPherson, K., & McNaughton, H. (2004). Success in the workplace following traumatic brain injury: are we evaluating what is most important? Disability and Rehabilitation, 26, 290-298.
TBI Research Review is a publication of:
New York TBI Model System
Mount Sinai School of Medicine
Department of Rehabilitation Medicine, Box 1240
New York, NY 10029
Project Directors: Wayne A. Gordon, Ph.D., and Steve Flanagan, M.D. Issue Editors: Margaret Brown, Ph.D., and Susan Connors
We wish to acknowledge the input of Drs. John O'Neill and Dave Vandergoot, both of the Employment Service System Rehabilitation Research and Training Center (New York, NY), supported by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education (Grant No. H133B040014). NIDRR also supports the NY TBI Model System (Grant No. H133A070033).
* An RCT at minimum requires that service recipients are randomly assigned to an experimental treatment of to a control group, such as receiving "the usual" services.
From Mount Sinai School of Medicine. www.mssm.edu.
Comments (16)
Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.
Anonymous replied on Permalink
I had a TBI from an aneurysm in 2008 after a heart valve problem from endocarditis. I spent 90 days in the hospital(had a 2nd heart valve replacement during the hospitalization) and 35 days in cognitive rehab. I went through the death of my father and brother within 6 months of these health issues, was terminated from my job and the wife filed for divorce. I had a residual health problem of a seizure disorder. I spent 3 1/2 years in therapy for PTSD during 3 years of divorce legal proceedings. I was fortunate enough to get SSDI immediately and have been on it for 9 years. I am remarried and we live a good life. I believe I am capable of returning to my career as a senior executive. Intellectually capable, but not certain of my endurance at 62 yoa. I have severe bouts of depression associated with not working and contributing to my familys economic situation. I also feel guilty not working. I have 2 children who are preteen and ssdi pays me the maximum and they receive money as minors. To replace that income, I would need to make over $80k/year(considering taxes and health insurance). I have limited savings(most the kids educational savings). I spent all of my retrirement funds on legal costs during the divorce and medical bills(post surgery and pre-medicare). I dread the thought of needing my children or wife to help me if/when I become physically and/or mentally incapable of helping myself. I took care of my Dad the last 25 years of his life and it was emotionally draining and limited my opportunities. It is so humbling and sad to be faced with such life changing situation after being a successful executive, a elite amateur athlete and an engaged father, brother and son. We are mere mortals and cannot predict our fate in this short life. God bless you all, we fight similar battle. People you love and know as friends and family will begin to treat you differently and that is also hurtful.
Anonymous replied on Permalink
I'm a TBI survivor of three years. Currently, I'm working but I'm always checking over myself, always. I'm also hypersensitive about my performance. So if I still make mistakes despite checking over myself five or six times, I take it very personally. I don't know whether to attribute that to my TBI or general carelessness. Yesterday, my boss wasn't happy with the department and it made me wonder how many of those mistakes were mine. This whole weekend, I'm going to be paranoid about whether or not I'm actually contributing at work, that maybe I've gone back to work too soon or something. I thought I was doing fine, but now I'm worried that I'm not
Anonymous replied on Permalink
Very good article. After years of seeing neuropsychiatry doctors a total of 2 actually knew how to help. They are now retired. The wisdom needed to diagnosing, treat, and relate is gone from the under 45 age group for they are being taught improperly. All were dumbfounded why I could even function after my severe TBI. They all lacked the one most important aspect of the human brain!
Anonymous replied on Permalink
I had a brain injury close to 3 Years ago from an car wreck. I got my then neurologist to let me go back to work after a little over 2 months off as my FMLA would soon run out. He wanted me to wait for at least six months. I said No I would rather sink trying to swim than not be allowed to at all. I continued rehab while I went back to work. When we switched office locations things became 10 times worse. I was no longer at the front of the office by myself rather the front with several in short distance. Long story short (try) multi tasking, organizational skills, prioritizing, and other skills that got me my job was now what I tried to pull off and is fall apart. My stress level is unreal. I never realized I could not do these things. I thought I would just you know reach in my pocket in pull out my God give talents only to find "there's a hole in pocket dear Georgie, A BIG STINKING HOLE". I feel like I don't even know who I am most of the time. I see the evidence coming as they are preparing my exit. Wow, no one told me this part. Where do you go from here.... or do I even want to
Anonymous replied on Permalink
Hello, I received my TBI in 1997 in an auto accident. In 2000 I was TRICKED into doing badly on a M.E.Q.(Mental Evaluation Quiz) this has made it so that I was unhireable. I know I could still do the work I did prior to my T.B.I. but because of failing that so said "mental evaluation" I'm stuck for life now. I'm stuck doing piece-work making pennies when I priorly was making $23.00/hr. Now I'm lucky if I make $2/hr. Is there any way in getting a new evaluation for returning to the employment I had prior to T.B.I.?
Anonymous replied on Permalink
I received my TBI in 2007 from a car wreck, because of the lack of proper medical treatment( had no health insurance ) I still struggle today. I never know what each day will bring, sometimes I have convulsions, sometimes I can't walk or talk, and sometimes I feel great but it never lasts long. Not being dependable enough to work is very stressful mentally, went from owning a business to being homeless and a wreck. Every day I will struggle and it won't always be visible and more people need to be educated about the injury so as not to judge!
Anonymous replied on Permalink
I am a survivor of TBI 2007. The Social Security Disability Judge ruled I was fine, no benefits at all. My doctors disagreed. The insurance settlement covered only what I owed the lawyer & medical bills from past plus the health ins co wanted & got reimbursed of any judgment I received.
The system is so flawed for those with TBIs. It is a no win & few advocates. I've tried to return to work I've done before but am unable to sustain any employment except limited self employment & temp jobs, well below the poverty level.
I finished a college degree recently thanks to ADA (Americans with Disabilities) accommodations & my doctors help to get that. I now have in $25,000 student loans that begin repayment in two months = and no job. Am working with the MN Workforce, they help those with disabilities find work (DEED), but how to exist on my own financially?
I have an assistant for the past nearly 4 years I pay myself to help me weekly with paperwork and basics. I rest a lot, am one who does not qualify for hardly anything & have drained all my retirement to survive.
I have so many fears regarding how to survive and the future, have few friends (but the few I have are true), and live in a world of quiet aloneness. I cannot handle the sound of a phone to ring or alarms. Light and noise are issues when I am tired. Vision issues. The hardest part is everyone but my doctors will say, "You look just fine."
Five hours a day is about my limit and that is for half of the week. Fatigue is horrid. The more I try to do the more fatigue & less days to work. Vicious cycle. I try to do less but I need to make a living. I've improved dramatically to get to this level over the past nine years.
Thank God my children are now grown. It was hard when they were younger and at home. My husband first emotionally left me then physically left, so I am divorced.
A livable wage job is nonexistence for me and unrealistic. My apologies this sounds so crazy. That is the world I exist in.
I will never have my previous lifestyle, work, or world back prior to the TBI. It is hard to make it in society that is built on a 40 hour work week, or 8 hour work day, and in need of benefits. I never thought my life would turn out this way.
Anonymous replied on Permalink
Reading these comments are really helpful.
Anonymous replied on Permalink
17.5 years after my TBI I was left with no option but to find a job...disability checks and insurance were discontinued...the thing I had relied on for my basic support just disappeared! I was devastated and nearly homeless when I got hired at Walmart. Ive worked there for 6 months now as a cashier...everyone is amazed at how well i do my work despite having a paralyzed arm and agoraphobia and MANY other residual injuries as a result of my tbi...even I am amazed of what I CAN do! But i have spent 6 months forcing myself every single day to just get our of bed...my body constantly aches and i'm an emotional disaster...working in many many ways is much more traumatic than the tbi itself! Wondering...will there EVER come a day when going to work will be natural...like breathing...and something that my brain just "accepts"?? I love the job...my coworkers are great...my bosses are understanding and helpful...bit i HATE the work..lifting...standing...thinking on the spot LOL its SO hard everyday...but i dont have any other choice now.. I DO recommend walmart as a company for any disabled individual who WANTS to work...they ate definitely the place to go...especially if you are unskilled and dealing with tbi life issues on a daily basis...they need to relax the absentee policy a bit tho lol (which they WILL do for tbi associates by the way) Not a sales pitch for walmart hr...but all companies should seek to employ those candidates who they can HELP...who WILL give 110% for normalcy, acceptance and a chance! More pay would be GREAT naturally, but for the work, all in all...the pay is not THAT bad...at least I can eat now AND pay a few bills...I REALLY could use a financial counselor though LOL
Anonymous replied on Permalink
I am in my mid 40s and suffered a tbi six years ago. I agree with the comment that thinking back to how one was is a big hindrance. Also though, I tried very early on to go back to quite highly skilled work, but due to fatigue, newly poor social skills and depression I lost or left three such jobs. Since then (3 years) I have been doing very badly paid, unskilled work and really have no idea what I am capable of doing, nor how to find out my capabilities. Is this it for the rest of my working life? What a waste.
Anonymous replied on Permalink
I have been married to a man who has a tbi for 30 years. Through those years we have worked together to create life strategies that have allowed us to have a wonderful life. After spending 20-plus years supporting my husband in his work life, I now work as an employment specialist and job coach for people who have tbi. I also facilitate a support group for friends and family of folks who have tbi which gives me much experience on which to do my work.
The tallest hurdle I have found in working with people who have brain injuries vs. people with other cognitive challenges is the memory of who they were getting in the way of who they are and what their current abilities are.
Anonymous replied on Permalink
To the 15 yr survivor, I relate. I am a 30 yr survivor. I lost my business,my husband left, I raised my children alone. I don't know how I made it but I did without working. And now at age 70 it is work, or go homeless, or quit living. I can't work for the very reasons that you mentioned. The fatigue, social skills, and the inability to handle being laughed at for these things. These things that seem so subtle yet are so pernicious.
Anonymous replied on Permalink
Hello I am post 15 yr TBI survivor. Ive had ssi disability income support me right after my trauma for 2 ys. Then I went back to work and I've found out my social skills gone? Making my work environment very unstable so as my job history? Its getting harder to keep a job because of fatigue etc due to my TBI.I just quit another job because my boss and coworkers make fun of me because of my tbi - social function! please help. I don't know what kind of job I need with my TBI!!
Anonymous replied on Permalink
My daughter has a brain injury from a car accident and returned to work a year after. As a caretaker, I can tell you there is a real need for individuals with brain injury to be re-taught social skills. Re-entering the work place lacking social skills is what it would be like to send a small child to work.
Anonymous replied on Permalink
Thank you. I am a TBI survivor and Brain Injury Advocate. We are working with several new VR programs specifically designed for bi clients. Your research will definitely help us design our program. Pat Murray, Director Brain Injury Help Center /BIAOR
Anonymous replied on Permalink