NIH Consensus Development Conference on Rehabilitation of Persons with Traumatic Brain Injury
*Paper commissioned by the Panel.
The Consumer Perspective on Existing Models of Rehabilitationfor Traumatic Brain Injury*
Theresa M. Rankin
This Consumer Perspective report is a discovery project for the purpose of identifying themes and trends in the consumer literature on views and needs of consumers on traumatic brain injury (TBI) rehabilitation (see Acquired Brain Injury, Figure 1, Lucas, 1994). A consumer is defined as a person with a TBI or a family member. The literature review was guided by a set of questions presented by the NIH TBI Consensus panel that address (a) the current rehabilitation models and (b) the various practices/methods of treatment for traumatic brain injury. The questions used were:
This discovery project serves to acknowledge the consumer perspective on a multiplicity of issues regarding TBI rehabilitation, but it is not designed to provide systematically collected data of what actually works in TBI rehabilitation practices. Based on the literature review consumer recommendations for research will be discussed in the Summary.
In an effort to identify nationally published sources of literature that originated with or reflected consumer perspectives, the leading authorities in the field of brain injury were contacted. The inquiry for consumer literature on rehabilitation practices found reports primarily from researchers or therapists speaking for or about consumers. The national project directors and resource managers acknowledged that no compendium of consumer literature exists nor is there a focused literature analysis dealing with a scientific/medical model review.
Therefore, the scope of this consumer-driven and consumer-oriented project, conducted over a period of four months, involved developing a search strategy focused on locating the networks of consumers who self-publish and for consumers who contribute to the national and regional publications. The literature that was reviewed included 107 sources with approximately 1300 items that were collected from the following sources:
The results of the consumer perspective literature review provided first person accounts on the wide range of needs and concerns; this broad overlay of topics was used to identify themes and trends primarily in the principles and practice of rehabilitation for community reintegration. The literature relevant to each consumer question on community integration is presented in terms of (a) issues as summarized from the consumer literature, and (b) consumer statements illustrating the issues.
Consumers, recovering from TBI diagnosed as mild, moderate or severe, tended to perceive the most effective rehabilitation practices for community integration as those that focused on person centered planning and enhancing the quality of their life: physical well being, mental health, return to school or employment, and community living.
"There is much to say about Acquired and Traumatic Brain Injury. The needs of the Acquired and Traumatic Brain Injured individual are broad and significant. There is a void in the health care for these people that must be addressed. How that will be accomplished is more dependent on the funds that are available than upon the techniques or facilities that are provided" (Fogel 1998).
"All too often, we define outcome in terms of medical prognosis, family wishes or monetary availability. Hopefully the TBI Act of 1996 will offer the monetary support for rehabilitation efforts to become more community-oriented and less institutional in nature." (Cleveland, 1997)
"We must recognize all resources for us to use in ‘living our own recovery,’ thus allowing us to have lives, not outcomes. Total healing, recovery and good health may need to involve the use of concepts, techniques and resources outside of the box of traditional medical/drug models." (Cannon, 1994)
The primary issues related to satisfaction with quality of life for a person with TBI are acknowledged in a current community integration outcomes study with 300 consumers (Bogner, 1995):
To understand the course and potential barriers to optimal recovery, the outcomes study, selected these several areas of outcome based on recommendations from consumers and family members seen as affecting long-term quality of life. General satisfaction with one’s life situation is being studied extensively (see Gordon, 1998).
The most effective rehabilitation component from the family perspective is identified as education, support services and family systems therapy:
Anne E. Peterson, M.S., has worked over 10 years in health care and clinical research, and is a family member of two brothers who sustained TBI, Hugh in 1972 and then Peter in 1995: "It wasn’t just the medical advances of 23 years that gave Peter a better outcome, and it certainly wasn’t better insurance coverage. The change was the leap in awareness of what it takes to adjust and live with a brain injury for life. Through new rehabilitation methods that included lifetime family support therapy, my brother and his wife learned to better use their own resources to recognize and respond in healthier ways to the changes that naturally occur. As a result, Peter’s family has survived." (Peterson, 1995)
These quality of life issues are identified by consumer authors who have 10-20 years of first person knowledge and systems expertise in surviving the challenges of TBI and rehabilitation.
Lynda G. Cleveland, doctoral candidate University of Texas at Austin, a person with TBI sustained in 1984; after being told "you’ll never work again" she recalls years of agonizing physical therapy and the years of living the ‘silent epidemic’:
"You can begin to sense inadequacies in our rehabilitation systems that fail to teach compensatory strategies for life beyond brain injury, and you certainly see the problems with the traditional system of belief that after 18 months surely the individual has made all the progress really possible.
I believe there are three keys to outcome potential in ‘my story’ that can benefit survivors of all ages:
Consumers tend to perceive the least effective rehabilitation practices as those that do not address the systems issues of the TBI and long term real world functional issues. The systems-focused rehabilitation model focuses on coordinating rehabilitation services within a lifelong continuum of care in order to understand all dimensions of an injury and the discovery of real-world patterns of function (Dolen, 1991).
With the current medical model, consumers report these areas of concern:
(a) the under/misdiagnosis of TBI
(b) inappropriate diagnosis and placement
(c) failure to provide person centered supports for related problems:
(d) difficult access to long-term rehabilitation & case management
(e) cultural diversity and cultural healing belief systems
Examples from the literature that reflect the least effective rehabilitation practices are:
The medical model addresses the physical injuries, but the family finds itself searching for brain injury diagnosis and rehabilitation:
Diane Murphy, a survivor since 1990: "I am six years post-accident. However, getting here was not an easy task. Taking the advice of very educated Dr.s, my husband brought my broken body home after being in the hospital in critical condition for two weeks. My family did not worry about my brain injury, at least not out loud. They tended to the visible injuries thanking God every day that my daughter and I had survived the accident. Who ever heard of a brain injury that doesn’t kill the person or put them into a life-long coma? Right?
Becoming better wasn’t nearly as hard as finding the right place to get better. I would really like to see the health community and the general population informed about all the problems associated with a mild brain injury. I am hoping that the next person with a brain injury gets directed to immediate care, not a band-aid excuse of ‘Don’t worry - it will all work itself out’." (Murphy, 1996).
The medical model provides a narrow window of entry for the majority of the identified TBI population who are seen in ER, but the protocol for diagnosis and referral is neither clear nor guaranteed:
Dr. Claudia Osborn, July 1988, injured as a bicyclist, taken to ER, but discharged within several hours. The at-home observation by her friend, Dr. Marcia Baker, was reported to Osborn’s mother I can tell you I was terrified about brain damage, but she woke up. She seems just fine, just fine.
In March 1989, unable to return to her medical practice, cognitive rehabilitation services were secured by Dr. Osborn not in her community in Michigan, but at New York University’s Head Trauma Program.
Osborn’s observation in correspondence to a member of the rehabilitation team in 1990 after rehabilitation: "I know I’m lucky. After all, I have a happy job, it looks as though I will be teaching, my writing is progressing well, and I still make my home with Marcia. Even so, Joan, despite my blessings, despite rehabilitation, I find my life difficult. How much harder it must be for the others."
"If I had been younger at the time of my injury, without long-term, strong relationships with supportive people; if I had lacked vocational ideas and life experiences; if I’d had greater impairments, I doubt that I would be okay." (Osborn, 1998)
The existing health care delivery system provides no choices or options for the services that people really need to address areas of dual diagnosis (substance abuse, mental health, TBI & spinal cord injury), as well as the areas of chronic illness, depression, or chronic pain.
Constance Miller, M.A., Director of the Phoenix Project, sustained a TBI in 1982: "‘The System May Get You’. Treatment for the sequelae of closed head injury is frequently colored by the presence of an unseen, third party. In a number of circumstances, the type as well as the length of treatment is decided by individuals outside of the actual treatment situation. Too frequently, the uninformed medical or psychiatric professional called upon to provide services forms an inaccurate diagnosis. This diagnosis can lead to inappropriate treatment and rehabilitation plans." (Miller, 1988)
The constant battle for consumers is not only to access health care but to navigate the obstacles in the managed care system as well as disability barriers to achieving one’s goals.
Tony Lazzaretti identifies the critical need to make appropriate services available: "I was injured in 1983; from July 85 to Dec 85, I participated in a hospital that served people with psychological problems. This was the only treatment setting that my insurance company would approve, but it was also the only opportunity for professional support at the time, so I took it. While I was in the hospital I began to see that my problems were not psychologically-based, they were the result of the problems caused by my brain injury. This was not understood by the hospital staff and I felt trapped and scared."
In June 1986, TBI rehabilitation began and "dealing with the problems caused by my brain injury was not necessarily easier, but I did feel more calm because I could explore the injury with other survivors and with professionals. I felt less isolated and less trapped." (Lazzaretti, 1993)
The physical, cognitive, psychosocial, behavioral services that a person needs after becoming medically stable continue to be limited in scope. Additionally, the current rehabilitation models need to prepare the consumer and family for assuming a management role in securing specialized treatment and needed services.
As a college graduate, a young man moved to California and a new job. "P.S." was injured in 1988 as an alcohol impaired driver. He describes the limited rehabilitation and long search for treatment after the single vehicle car crash: "My rehabilitation started immediately after I awoke from the coma. I went to one of the top rehabilitation centers in California but they failed to hold out some hope to me of ever walking again. I believed them and sat around for almost 3 months, not even trying.
Due to the diagnosis I received and the probability of never walking again, I lost all hope of ever returning to ‘normal.’
I was faced with the decisions to either die miserably or to get on with my life. I chose the latter. After I joined that twelve step group in New Jersey, I found that I wasn’t alone and was among people that understood. Since the accident changed my life and through the process of self-discovery, I have felt drawn to counseling field and I’m now pursuing my Master’s Degree in Substance Abuse Counseling." (TPN Magazine, 1996)
The TBI rehabilitation programs also need to address the day to day life management issue of relationships and rebuilding the quality of emotional intimacy. Sexuality and the adjustment to disability after TBI are becoming integrated into the rehabilitation process, but the teaching of communication and interpersonal boundaries are elements that few programs address. "If the practice of rehabilitation is to move beyond simple physical and functional restoration to genuine healing and restoration of quality of life, more time, energy and imagination must be applied to helping restore such qualities as intimacy, communication and spirituality in persons with brain injury and their families." (Blackerby, 1993)
Carol Taylor, now on a new career as a Paralegal, sustained a brain injury caused by a driver who ran a red light:
"‘Was I Absent the Day They Covered This In Rehab?’ The ability to meet people decreases for a survivor specially if you’ve lost the ability to return to work. For the first couple of years you’re busy "pursuing" just getting your life back on track. How does one pursue a relationship when they have limited physical abilities?" (Taylor, 1993)
Of equal importance in rebuilding one’s life is the counseling and intervention in the domain of mental health.
Frank Foss, a musician who studied at the Royal Academy of Music, sustained a TBI that detoured his goal to be a College Level Music Teacher: "I ended up homeless on the beach, very disoriented. I found myself cooking outside, surrounded by strangers. I had no security and felt psychologically disturbed from emotional issues." (Vincent 1998)
The intervention was provided by his parents, Bill and Lita Manson: "My parents brought me to a Psychiatrist. Dr. Robertson pinpointed neurological damage after a CAT Scan. Because of his professional attention and some cognitive rehabilitation, I graduated from college after my injury. Now I am able to work again. Some of us, who are just a little out of the ordinary because of TBI don’t need institutionalization. It is very difficult to not feel a part of society. We do need to feel that we exist in a community that accepts us (Vincent, 1998).
The family perspective by Lita Manson: "At times, I am bitter, I was quite shocked by the unkindness of people here in the USA who need us all to be ‘beautiful people’. I know from my travels abroad as a Social Field Anthropologist, that brain injury can result from many causes and can happen to anyone. This is a silent epidemic! Brain injury must be studied. The American Public needs to be awakened about TBI." (Vincent, 1998)
The rehabilitation models provide no follow-up plans, so that after the families’ resources are exhausted, the threat of institutionalization is predominant.
John Burns sustained a TBI at age 21 in Ohio: "After the car accident and treatment in the hospital, I began a ten year battle to regain my rights and my dignity. I was transferred from nursing home to nursing home trying to find someone who cared enough to ask me if I needed anything, instead of telling me what I needed or worse, ignoring my simple questions.
I now live in a home in a community setting, with another man who also has a brain injury. We have staff in our home 24 hours a day who address our physical needs, our emotional needs and are also our friends." (Life After Brain Injury, 1994)
A primary theme in the literature from family members, significant others, and caregivers is the compounded crisis and trauma of fighting for appropriate care:
Janet Rife, parent, author and disability advocate, fought the crisis for her son, Brian Rife, injured in 1985: "Considering how hard we had to fight for funding and continued therapy when Brian’s future hung in the balance, it is easy to imagine how many people have neither the energy nor the knowledge to stand up to insensitive systems.
Using sophisticated medical technology to save a life, and then consigning that person prematurely to maintenance care is a horrendous injustice." (Rife, 1994)
Health care providers need to understand the belief systems embodied by the people coming in for diagnosis and treatment. This is an area of study that the literature is lacking in, but is an area of concern surfacing at national and regional conferences. "The United States is represented by many diverse populations. However, there is a subset of this multicultural society which utilizes fewer health services and collectively tends to be in poorer health. This subset is predominated by African Americans, Hispanic Americans, Native Americans, and Asian/Pacific Americans" (Morgan, 1997). The need to bridge the gaps in health care and injury prevention are paramount in alcoholism, unintentional injury, depression and violence related injuries.
Advocate’s Perspective: "My name is Theanvy Kuoch and I am a survivor of the Pol Pot Regime in Cambodia. I am a Health Program Assistant for the State of Connecticut and am also a Family Therapist. I am here today to share with you about the culture and context of the Cambodian people and how it affects their health care. In the Cambodian culture, if you don’t feel good, something is wrong and there is always something you can do about it. Sometimes you do something traditional like coining, sometimes something spiritual or sometimes something Western, like surgery or medicine.
If you feel that a Cambodian does not have a condition that you can treat, suggest that they seek help from a Cambodian healer or a monk if they are Buddhist. But, tell them clearly that you cannot help with this illness; don’t tell them they are not sick." (Kuoch, 1997)
Based on this literature review, consumers report varied experiences with involvement in goal setting during rehabilitation. This question assumes that consumers have the access and the availability of their families as well as the length-of-stay allowance for goal setting provided under full comprehensive insurance coverage or long term case management. The reality for consumers is that the doorway for goal setting is set by hours or days, not long term outcomes of skills, strength or self-esteem.
Consumers present their perspectives in terms of recovery, not rehabilitation, this being a long-term outcome process which is not complete until restoration of quality of life is established and maintained. Therefore, an important "discovery" of this paper is to recognize that different languages are being spoken in reference to goals by the medical/scientific community compared to the language of consumers and families. Consumers face an ongoing search for access to systems and appropriate services when talking about "rehabilitation goals."
Kathy Moeller is a skills trainer and creator of the Brain Book@ Life Management System; a compensatory skill and residual strength building program for persons with brain injury. Kathy experienced a brain injury in 1990, but received appropriate acute care, 5 months in residential program therapy and 9 months of outpatient treatment to in which she learned how to apply new life skills to a professional environment. In her 1994 first published article post trauma, "Compensatory Skills Training," she states:
I am passionate about the value of practical compensatory skills training because solid strategies are essential for people with head injury to succeed at work. Many of my peers would be working, too, if they were given the opportunity to learn how to compensate. The main difference between my situation and the situations of many of my clients is that many of the individuals with whom, I work enter the vocational rehabilitation process without receiving much in the way of compensatory skills training. Based on the so called "medical model," many people with head injury are discharged from acute care, deemed medically stable and ready to return to their homes and families--with little or no cognitive rehabilitation therapy.
It saddens me to encounter people exactly like myself who receive little or no follow-up care for practical compensatory skills development. Often, they do not realize that they are lacking in this area. What they do know is that things are not working right, they are hurting, and they need ‘something’, not quite knowing what that ‘something’ is." (Moeller, 1994)
Consumers have long known that the process of brain injury recovery does not follow a linear path once one has exited the acute phase of medical care. In the same way, services designed and driven by consumers acknowledge that the individual needs of consumers are different in substance and in timing. "Providing the service that the individual needs at the appropriate time in the recovery process is the most effective, and empowering rehabilitation practice." (Cannon, 1994) The universal goal is to have all consumers experience the following:
Tony Lazzaretti’s perspective and experience from a specialized brain injury rehabilitation program: "I had supportive opportunities to work collaboratively with therapists out in the real world. These initiatives were focused on goals that I identified as being important to my future. Rehabilitation gave me a foundation to move forward with my life." (Lazzaretti, 1993)
Overall, consumers report dissatisfaction with the outcomes of TBI rehabilitation based on not being included in the goal setting and the common problems of the lack of information (Dolen, 1991), the lack of options, the lack of assistance for problem solving and decision making, and lack of coordination among programs and service providers (Palmer,1998; Taylor,1998; Vincent,1998). A characteristic of the consumer literature is the retrospective value that consumers’ have given the inappropriate length of time between when the consumer experienced TBI, the access to appropriate rehabilitation, and a return to the community, and the window of opportunity for when a consumer finds the means by which to publish a viewpoint.
The goal setting process in any one quality of life domain may not even begin until several years of survival have passed and the consumer discovers a new resource or community of support. The profile of persons with TBI includes a population of survivors who are just now being acknowledged but still not accessing critical services after years of survival: "(1) individuals with cognitive impairment who ‘lack physical disabilities’; (2) individuals without an effective advocate to negotiate the social service systems or without a social support system; and (3) individuals with problematic behaviors….without treatment, these individuals are most likely to become homeless, institutionalized in a mental facility, or imprisoned." (GAO/HEHS-98-55, 1998)
Yet there is also a population of survivors, now in their second or third decade of life post trauma, who are working on the issues of aging and living with this chronic disability:
Kiersten Rain sustained a TBI as the result of a violent sexual assault nearly two decades ago:
"Two weeks after the attack, as I slowly gained consciousness, I began to discover that the world had changed, irreversibly. All decisions were made for me. My own opinion no longer counted. When I lost the ability to speak, I lost the ability to make choices concerning my life. When I was eventually told I suffered a severe brain injury, I thought that meant I was mentally retarded. Other’s responses to me only validated this.
As years moved on, I re-learned many things. ….A kind neurologist told me that even though my body was filled with uncontrollable and painful spasms, he could see that I still had a mind.
A few years ago, I heard about the Mt. Sinai Medical Center’s research concerning women with TBI. ....For the first time in over 15 years I was in a group of others who could truly understand me. These women shared with me the same type of struggles to survive and function with their disabilities." (Rain, 1997)
The often unspoken and undiagnosed pervasiveness of secondary conditions includes chronic orthopaedic or myofascial pain, chronic fatigue, vestibular complaints, fibromyalgia, post-traumatic vision syndrome, immunosuppressive disorders, neuroendocrine dysfunction, and neurological difficulties (Hibbard, et al. 1998).
The consumer dissatisfaction and decades of concerns are again based on issues dealing with community integration and the larger quality of life questions cited in Figure 2, Advocacy Statements of Consumers (Life After Brain Injury: Answers I Can Live With (1994), and Figure 3 the "Community Integration: Barriers to Optimal Quality of Life" provided by Corrigan (1994). The reality for consumers is that the medical model of rehabilitation may adequately address goals in physical survival, but the remainder of rehabilitation models in cognition, psychosocial, behavioral and vocational domains are currently not successful in addressing long term consumer and family needs for education in the transitions needed for ‘recovery beyond rehabilitation’ (Patrick, 1996).
According to consumers, the primary missing piece in the goals, administration and overall organization of TBI rehabilitation is the active involvement and consideration of the consumer perspective. This paper acknowledges the framework of a universal consumer perspective presented in Figure 2, Figure 3 and Figure 4, a model of the community integration components (State of Virginia, 1994). These three illustrations of the consumer perspective serve as essential elements that must be considered in the design and data collection protocols for future studies and designs of effective systems for rehabilitation of people with TBI.
These three elements have been introduced in different arenas of TBI rehabilitation design: a national consumers conference, a Rehabilitation Services Administration Comprehensive TBI Center now a TBI Model System, the State of Virginia and the MidAtlantic TBI Consortium. And all of these ‘voices’ speak to the long overdue change in expectations, practices, and policies supporting self sufficiency and community membership. This literature represents how persons with TBI and their families are acquiring piece by piece, ownership of the rehabilitation process and regaining the array of rights that are infringed on after a catastrophic injury.
"…..as the community integration and independent living movements being to converge.....there is an evident shift in practice and policy from defining community life in terms of residential facilities toward more flexible, consumer-responsive approaches. Yet, in part due to their medical roots, fields such as traumatic brain injury are just experiencing these changed expectations, practices and policies supporting self-sufficiency and community membership on the part of people with disabilities" (Racino & Williams, 1994).
Poor outcomes in rehabilitation for brain injury survivors may be directly related to failure to involve consumers in goal setting; failure to consider long term quality of life issues in planning rehabilitation; failure to appropriately diagnoses and provide treatment for persons with TBI in programs that will maximize their residual strengths. In addition to these problems within the existing rehabilitation models, persons with brain injury typically find themselves with no supports after the initial period of acute or post acute rehabilitation (Windsor, 1993a).
Wanda Windsor, Project LINCS Director, San Diego Community College District (SDCCD) and a person with TBI, stated during her presentation at the Journey Toward Independence conference, 1993:
"at a time when funding resources are scarce and long term needs of survivors are expensive, it is incumbent on providers and community support systems to design creative coalitions and partnerships that meet the needs of individuals with head injuries, most of whom are without long term insurance support for rehabilitation, re-education, and community re-integration (Windsor, 1993a)."
An important acknowledgment throughout this project is the difference in language and focus presented in the consumer literature compared to the medical/scientific literature. The medical community speaks of models and modalities, the consumer speaks of the return to their community and the relationships that signify their quality of life.
The gaps in the current "continuum of care" challenge the consumer to create pathways for getting on with life in spite of it all (Nelson, 1990; Gwin, 1992; Bogdan, 1992; The Needs Conference, 1994). Access to wellness is one of the predominant themes of consumer literature that represents a gap in the continuum. The consumer, the majority relying on state assisted services and a small percentage enabled through insurance or personal funding, is characteristically searching for access to appropriate health care (Vincent, 1998), individual and family therapy (Rocchio, 1998), complementary medicine (Dolen, in press), educational resources (Windsor, 1993a), and support services for independent living (Gwin, 1992) and vocational development (Thomas, 1993).
"Fourteen years post injury, I finally realized that I couldn’t do everything I wanted. I became clinically depressed and began to grieve the loss of a life I could never have. I sought the help of the Michigan Rehabilitation Services. The head injury specialist there sent me to my first head injury rehabilitation program in 1989. Today I am working in my chosen field of interest (Social Work). My greatest strengths lie in group work. I have created an acceptance group for head injured survivors, where attitudes and skills necessary for successful independent living are developed" (Bauser, 1993).
Addressing this loss of self and the grieving process is an area of rehabilitation often overlooked or only partially included in the process of cognitive rehabilitation. But given the fragmented system of care, most consumers and families need to be linked with the existing network of community based brain injury support groups and other self-help groups (Rocchio, 1998).
Another critical recovery and systems need deals with the principles of self-determination and independent living as outlined by consumers in The Needs Conference for Underserved Consumers with Head Injury (1994), Life After Brain Injury: Answers I Can Live With (1994) and in Navigating the Future (1994). These first-person accounts demonstrate that the knowledge and expertise of the consumer provides a critical resource for structuring rehabilitation practices and community based services (Youngbauer et al., 1994).
In terms of the organization of rehabilitation, the current rehabilitation model continues to provide access to acute rehabilitation, but with an increasingly shortened approach to care. Consumers and their communities are fully aware that this model is not adequate in designing or achieving long term effective outcomes in physical, cognitive and psychosocial function.
The models for effective involvement of consumers begin with a TBI Curriculum for consumers and families to navigate the stages of trauma, rehabilitation and recovery (Dolen, in press; Miller, 1988; Rife, 1994; Talbert, 1991). The primary and secondary disabilities present a long term cycle of searching for information and referral (I&R) (Rocchio, 1996a). The point of entry for a consumer into this I & R process begins from time of injury, to the ER and Trauma Center, throughout acute and post-acute rehabilitation, and continuing for the community integration/quality of life (Brain Injury Association of Virginia, 1994).
Isolation is a chronic systems condition that impacts the family and consumer: " I am a believer that the entire family unit should be rehabilitated. When the family is a part of the rehabilitation team it is more likely that the family will not become dysfunctional " (Bolden, 1992).
Of equal importance to the quality of life for persons with TBI is employment. As known by James S. Brady, Chairperson of the Board of Directors of the Brain Injury Association: "The most common question among those with TBI is ‘When will I be able to return to work?’ Society is such that often our sense of worth is directly related to our occupation. Nothing can destroy self-esteem faster than having your opportunity to ‘make a living’ taken away.
The only thing we want or deserve is to have the exposure and access to all the community has to offer. We are entitled to be treated with the same dignity and respect afforded non-disabled citizens.....and the chance to experience the benefits of employment that most of the workforce takes for granted: a regular paycheck, an avenue for developing friendships and the opportunity to be seen by others as a valued, productive member of the community" (Brady, 1994).
In 1992, consumers testified to a Congressional Subcommittee about their dissatisfaction with the existing facilities and models for rehabilitation.
"I am alarmed at the lack of consumer involvement in services for people with head injuries, the lack of community based supports, and alternatives to institutionalization. The Federal Government continues to fund multimillion dollar research grants that do not address our real needs. Tax dollars would be better spent on identifying and developing community-based supports. In the current rehabilitation system, there is this continuum of care with the difference being that you move away from your community and support the facility’s community" (Watson, 1992).
Given the fundamental changes in the health care environment, including the shift from inpatient to outpatient care, the need for community based research and innovations in rehabilitation models is evident.
Based on the review of the available literature here are recommendations for research:
The process of re-learning is critical to successful integration back into the family, community and work/school. This process is more effectively facilitated when learning takes place in natural settings, in addition to the classroom or rehabilitation setting. Project LINCS (Learning in Natural Community Settings) was designed to provide follow-up with the real life needs of survivors and their families. This model views the rehabilitation process "as essentially educational, requiring skilled instructional training and long-term maintenance support in community settings....The goal of Project LINCS was to establish a consumer-driven system to engender successful long-term employment or productive activity, maximize independent living and provide community support to survivors and families. The intent was to do these things through a cost-effective community-based reintegration program for adults with head injuries, funded by partnership coalitions and cooperative agreements within a network of providers and consumers that would be replicable in other communities nationwide" (Windsor, 1993b).
A program utilizing rehabilitation in neuro-behavioral training is the club house model, providing a consumer-driven environment where individuals are "members" rather than "patients". In the process of running the clubhouse, the members learn life skills that enable those considered "too disabled" to gain greater control of their lives. This provides a safe, supportive environment where individuals can begin to explore the question, "What next?" (Jacobs and DeMello, 1995). The process of community rehabilitation is to achieve or regain the confidence and skills necessary to lead vocationally productive and socially satisfying lives (Rufing, 1995)
With the goal of providing better outcomes in the delivery of employment services, Project CIRCLE established a new collaboration among service providers under the guidance of ICON Community Services (Yaffe, 1993). The project combined the consumer’s determination and willingness with the at least three service providers: the case management services of a community based agency, the resourcefulness of the vocational counselors from the Department of Rehabilitation for the state (MD,VA,DC) and the creativity of the employment specialist in developing work re-entry strategies.
Project CIRCLE is based on collaborating with metropolitan area businesses which have agreed to provided a Mentor to the new employee. The Project CIRCLE staff identifies the job tasks that match the skills of the client, and then provides training and support during this "situational assessment." The focus on empowering the consumer involves first building a "circle of support", which is a core group of persons close to the individual who can provide hope, encouragement, and advice as the work re-entry process is carried through for a successful return to the world of self-sufficiency and community membership (Rankin, 1993).
Adapted by Stacy O. Lucas from: R.C. & Wolcott, G.F. (1994). Overview of acquired brain injury. In R.C. Savage & G.F. Wolcott (Eds.), Educational dimensions of acquired brain injury (pp. 3-12). Austin, TX: Pro-ed.
Used with permission from S. Lucas, adapted from Savage, R.C. and Wolcott, G.F. (1994)
ADVOCACY STATEMENTS OF 6 RSA FUNDED TBI CENTERS
OSERS Conference November 1994 - "Life After Brain Injury:
Finding Answers I Can Live With "
Rehabilitation ACT AMENDMENTS of 1992 "Congress finds that disability is a natural part of the human experience and in no way diminishes the right of individuals to live independently; enjoy self-determination; make choices; contribute to society; pursue meaningful careers; and enjoy full inclusion and integration in the economic political, social, cultural, and education mainstream of American society..." P.L. 102-569, Title 1, Section 101 (29 U.S.C. 701) Sec. 2
From: "Life After Brain Injury" (1994)
Corrigan J. "Community Integration Following Traumatic Brain Injury." Table: Barriers to Optimal Quality of Life. NeuroRehabilitation, An Interdisciplinary Journal 1994; Vol. 4 #2:109-121. Table 2, pg. 113, copyright 1994, reprinted with persmission from Elservier Science
Source: State of Virginia (1991)
Is a publication with stories from people with brain injuries written to illustrate the following Principles of Empowerment and Self Advocacy:
Navigating a Future is a publication of the Comprehensive Regional Brain Injury Rehabilitation & Prevention Center, the Dept. of Rehabilitation Medicine, Mt. Sinai Medical Center. New York. Support for the Regional Center came from Grant #H128A000222, the Rehabilitation Services Administration, U.S. Department of Education, Washington, D.C. (1994)
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