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vol. 2 issue 1
Brain Injury and Community Based Issues
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4 Chairman’s and Guest Editor’s Message 33 Conferences 38 Professional Appointments
contents
departments
vol. 2 issue 1, 2005
6 Acknowledging Severe Brain Injury as a Chronic Disability. Developing Viable Community Resources where they are needed most
features
by David Seaton
10 Skill Acquisition and Automatic Process Development after Brain Injury: A Holistic Habit Retraining (HHR) model for Community Reentry
by Michael F. Martelli, PhD, Nathan D. Zasler, MD and Patricia J. Tiernan, RN
18 Discharge Planning Following Traumatic Brain Injury
by Mark J. Ashley, Sc.D., CCC-SLP, CCM and Susan M. Ashley, M.S., CCC-SLP, CCM
24 A Quality Scorecard for Community Based Services by Debra Braunling-McMorrow, Ph.D. and Randy Evans, Ph.D.
28 Evaluation and Treatment Plan Implementation in Community Re-Entry Following Brain Injury: A Neuropsychological Approach by Bradley G. Sewick, Ph.D., ABPN, CCM
36 Professional Viewpoints: Controversies in Neuropsychology by Dorothy Sims, Esq.
north american brain injury society chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family liason Julian MacQueen executive vice president Michael P. Pietrzak, MD, FACEP executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD communications manager Brandy Buzinski marketing manager Joyce Parker graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes
brain injury professional publisher Charles W. Haynes publisher J. Charles Haynes, JD executive editor Donald G. Stein, PhD editor in chief Nathan Zasler, MD design and layout Nikolai Alexeev advertising sales Joyce Parker
editorial inquiries Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org
advertising inquiries Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787
national office North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org
Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2005 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 772191400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com
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chairman’s and guest editor’s message The War In Our Brain Injury Community Conflicts have become an integral part of our lives over the history of the human race. We, historically, have gone to war over economics, race, gender, religion, sexual orientation, political beliefs, and hunger, among others. Today, we continue to go to war over the same issues; however, there are even more battles being fought. There is an outcry regarding the more than one thousand soldiers killed in Iraq. Yet, there is no outcry for those 50,000 Americans who die from TBI every year. There is an outcry regarding the AIDS crisis, which affects 850,000 - 950,000 people and, this year alone, it is estimated by the National Institute of Health, that there will be research funding of 2.8 billion dollars available. Alzheimer, which affects 4.5 million people, became another new battle, and 680 million dollars is pledged. However, for the 5.3 million Americans living with TBI, only 78 million dollars are pledged. Therefore, the biggest battle that is taking place, is regarding our citizens who have become disabled as a result of traumatic brain injury. In the "golden years" of traumatic brain injury rehabilitation, programs flourished, advocacy was established and traumatic brain injury was on the road to recognition. Today, fewer and fewer of our citizens receive care, and our communities of people with brain injuries are in danger of being lost. Community re-entry programs were deemed "not medically necessary" and long-term community living programs became warehouses or skilled nursing facilities. The battle rages between those who fund and those with disabilities. Who wins? We see turf wars between professionals, war between family members (Florida case of Theresa Schiavo), war in communities that do not want people with brain injuries to be their neighbors. A battle is brewing regarding Medicare reform that will shut down thousands of beds in our rehabilitation hospitals. We battle over patients. Providers battle over survivors by making deals and diminishing care. Providers battle the insurance world over funding, who gets care and what kind of care. Our survivors are at war with their families, their treatment providers, their communities and, even, their spirit. There is the battle in the courtroom. Two neuropsychologists, two neurologists, two psychiatrists, two different opinions, same patient. The reality which we face is 50 million Americans without healthcare coverage including federal funding, tens of thousand of soldiers returning from Iraq with permanent disabilities, no federal mandate or debate on healthcare, assault weapons once again available, a desensitization by the American public for people with disabilities, and no clear vision as to how people with long term handicaps from brain injury will thrive in our communities. We need to declare war! War against a mindset which seeks to limit care, and war against those who will limit the voices of individuals with disabilities. War must be waged against political agendas which increasingly show little concern for establishing communities where people who are challenged cannot only survive but thrive and once again find joy in their lives. War must take place against new government regulations that are convoluted and whose aim it is to serve fewer people or serve them in inappropriate settings. This is a battle that must be waged if we hope to serve our citizens with brain injuries in our communities. We need to wage war in case those of us who serve become challenged, that we will receive appropriate interventions. We must persevere so that even though we have lost many battles, we will not lose this war! This, the third issue of the Brain Injury Professional, marks what is becoming an increasingly popular periodical for professionals working in the field of brain injury.
The first issue addressed the bio mechanics of brain injury and the second described controversies in the field of neuropsychology. In addition to the five excellent articles prepared for this periodical, we are also printing a very well articulated rebuttal by Dorothy Sims regarding opinions presented in our previous issue, "Controversies in Neuropsychology." I would encourage readers to post their thoughts regarding any article appearing in Brain Injury Professional on our website forums at www.nabis.org. I also would like to thank each author for taking the time to prepare such excellent materials for this issue, entitled "Brain Injury and Community Based Issues". The first article by David Seaton describes brain injury as a chronic disability. He also underscores the magnitude of the problems facing professionals in brain injury by suggesting that the current health care and social services systems simply are not prepared to cope with the fact that brain injury is a chronic care issue in our society. He lays out a holistic chronic care approach to help both the individual and their families establish a support system. The article by Martelli, et.al, gives a very thorough description of the Holistic Habit Retraining (HHR) model for community reentry. It also provides a review and comparison of traditional rehabilitation versus a newer neurorehabilitation model. The article postulates that a major learning function of the brain involves what is called "habit manufacturing." The charts that accompany this article can be found on the NABIS website. Mark and Susan Ashley focus on the discharge issues facing both individuals with acquired brain injuries, and their care givers, a number of years post injury. The article offers a thorough review of the literature, as well as addressing significant issues in long term discharge planning. Much of this has been prompted by the significant changes that have occurred in our health care reimbursement system. Debra Braunling-McMorrow and Randy Evans, propose a score card for community based services. The article suggests moving away from outcome or treatment gains and to focus on quality and value for individuals who are receiving brain injury services. The score card and definitions provide an excellent tool to integrate the consumer's input into the rehabilitation process. Bradley Sewick outlines a neuropsychological approach to community reentry following brain injury. An extensive review of standardized assessment procedures is undertaken. A number of tools and techniques that may be of benefit in the rehabilitation process are discussed. He further suggests that assessment procedures for individuals who have sustained a brain injury, should consider valid standardized objective measures which will include information from both the individual, as well as the family. This third issue provides the reader with a wealth of information regarding many problems involved in community reentry and long term living after traumatic brain injury. This is yet another excellent presentation of materials that will be of benefit to professionals working in brain injury and, therefore, by increasing their knowledge and adding to their practice, will obviously enhance the delivery of services to their clients. It is important to mark your calendar for what will be the first major brain injury conference in a number of years. It will take place in Amelia Island, Florida, on September 22-24, 2005. More details are given in this issue and on our web site.
NABIS welcomes its first official state affiliate: the TEXAS BRAIN INJURY SOCIETY 4
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Robert D. Voogt, Ph.D., C.R.C. Chairman and President
tbis
texas brain injury society
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Acknowledging Severe Brain Injury as a Chronic Disability Developing Viable Community Resources where they are needed most by David Seaton A Chinese proverb states “the first step towards wisdom is calling something by the right name.” For millions of Americans a brain injury means a chronic disability. While the majority of traumatic brain injuries (TBI) reported annually are classified as “mild”, this article contends that the brain injury industry has not done an adequate job over the past 25 years acknowledging the millions of catastrophic brain injuries in America that result in a chronic disability, and educating society about the long-term realities. The average American is still quite unaware of the potential long-term implications of a severe TBI. Most people have either a “Hollywood” view of a brain injury as something you overcome, or as a miraculous recovery, or a comical view, like the Three Stooges, that a hit on the head makes you “act silly” for a period of time. There remains today a limited awareness about the potential long-term implications of brain injury, and few public resources for the millions of individuals and their families living with the related chronic disabilities.
Occurrence Brain Injury has long been referred to as the “Silent Epidemic.” The staggering incidences of TBI are well documented. For millions of families in America, brain injury becomes an unremitting force. With advances in medical technology, many individuals have survived conditions once fatal. However, our funding, healthcare delivery system and social services have not kept pace with the needs of this growing, surviving population. The Centers for Disease Control and Prevention (CDC) estimates that annually 1.5 million Americans sustain a TBI, resulting in 80,000-90,000 new individuals experiencing the onset of long-term disability. As the cumulative result of past traumatic brain injuries, an estimated 5.3 million men, women, and children are living with a permanent TBI-related disability in the United States today1. While the risk of having a TBI is substantial among all age groups, this risk is highest among adolescents and young adults (15-24 year olds), presenting a potential 50-year life span living with a chronic disability. These injuries have both short-term and long-term effects on the individuals, their families, and society and their financial cost is enormous. According to one study, the annual direct and indirect costs associated with TBI in the United States are $37 billion2. The CDC referred to brain injury as the “invisible epidemic” in a report to Congress because the disabilities are not readily apparent to the public, unlike a broken leg for example. These disabilities, arising from cognitive, emotional, sensory, and motor impairments, often permanently alter the person’s vocational aspirations and have profound effects on social and family relations1. 6
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While other disabilities, such as spinal cord injury (SCI), occur far less frequent than TBI in the U.S., (Nearly 200,000 SCI living with related disability vs. 5.3 million TBI)3, awareness for SCI is much greater partly because of celebrity occurrence (i.e. the late Christopher Reeves), media coverage (i.e. stem cell research) and the SCI itself requires the person to use a wheelchair, which creates visibility and is usually understandable by the public. Harris Interactive recently conducted a survey for the Brain Injury Association, Public Perceptions of Brain and Head Injuries. The findings included: ● One in three Americans says that they are not familiar with the term brain injury. ● Seven out of 10 Americans (70%) believe it is possible for a person to recover from a brain injury. One in five (20%) think a brain injury is permanent. ● 77% of American adults who believe brain injuries are survivable think that a person who has sustained a brain injury is usually capable of living a productive “normal” life. ● Three out of four of adults believe there is a difference between a brain and head injury and 97% of these individuals think it is possible for a person with a head injury to recover4. Over the past 25 years our society has made great strides accommodating the needs of many physical disabilities (handicapped parking, ramps, transfer bars, visual impaired & hard of hearing technology, etc.). When we see someone with severe physical disabilities, such as someone with Cerebral Palsy or a Spinal Cord Injury, we understand the permanency of the disability and the need for ongoing supports and compensating devices to assist in long-term functionality for the remaining lifespan. Few people would ever expect someone with a spinal cord injury to “recover” from their neurological disability and no longer require supports or resources. As a result, we anticipate the long-term needs of the individual with a chronic disability and make accommodating plans for a lifetime. When an individual is severely disabled it forces a revision of many life plans and expectations as the family reorganizes itself around the disability. And for millions of families, following acute care, the parents are often forced into the role of primary caretakers. In recent years, changes in our healthcare delivery system, including shorter hospital and rehabilitation stays, have shifted even greater responsibility and cost for the care of persons with disabilities onto the family. Family caregiving is at the core of what supports individuals with chronic disabilities. The Family Caregiver Alliance reports in their 2004 Policy Brief, Family Caregiving and Longterm Care that 78% of adults receiving long-term care at home rely exclusively on family and friends to provide
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assistance5. Family caregivers continue to be the most neglected group of the health and long-term care system. Most family caregivers face multiple competing demands of providing long-term care in addition to work, childcare and other family responsibilities. The juggling act can contribute to burnout, depression, and other adverse health effects. In addition, for millions of “baby boomers” with chronic disabilities, their aging parents who serve as the primary caretaker, now or will soon require their own caretakers. Our current social healthcare system is ill equipped to address the complex needs of this growing population of people with chronic disabilities. So who will subsequently assume this primary caregivers role of both the person with the disability and their aging parents? For many families it will be the siblings who, historically, may have been only peripherally involved. However, with the parents no longer being capable of remaining the caregiver, they may now be forced to assume the primary caregiver role. This usually means a significant disruption in the siblings’ present lifestyle and plans, as they must simultaneously care for the needs of their sibling and parents. The challenge of a severe brain injury is to get our society to recognize it as a chronic disability for millions of individuals and his/her family. It has become painfully clear that the most debilitating long-term problems faced by most individuals with brain injury, their families, and society, are the subsequent cognitive, psychosocial and behavior deficits, not necessarily the physical deficits. A severe brain injury evolves from a medical phenomenon to a long-term sociological issue. Unfortunately, 80-90% of all the financial resources are spent during the first year after the injury, but are needed over the remaining 40-50 year lifespan. The chronicity of a brain injury requires us to avoid a short-term, medical model, curative approach and adopt a long-term “contingent functionality” philosophy. Simply put, a person with a brain injury lives optimally when the necessary environmental supports remain in place. A supportive environment does not change the individual with a disability, but allows the person to maintain or gradually improve their functionality on an ongoing basis. However, this is highly contingent upon the environmental supports staying in place, and should be recognized as permanent, not transient in nature. We don’t remove the environmental support for someone with a spinal cord injury (i.e. wheelchair, ramps, etc.) and expect him or her to function well. The same can be said about someone with a brain injury. It is not surprising that an individual does well in a structured, supported treatment setting, but regresses when discharged to an environment without those support systems. Compensating for a deficit is known as interdependence and suggests the relationship between a person’s needs and their use of environmental supports determine their degree of autonomy. Interdependence refers both to the person’s ability and the amount of personal and environmental support they require to function optimally. Thus, the disability is amplified when the environment fails to provide the needed supports. Since the environment has such a pervasive effect on functional level achieved by individuals with disabilities, most experts agree today that the individual should no longer be the sole focus of intervention. Attention must be also be applied on ongoing environmental supports, especially the family. Since spontaneous recovery after a brain injury is limited, deficits can only be lessened through on-going therapeutic interventions and support services. The on-going support promotes transition along a continuum of care into less restrictive environments. Stability within the least restrictive environment ultimately contributes towards the quality of life attained and the long-term financial implications of the disability. It is clear the current health care and social service systems are not prepared to cope with the challenges that brain injury chronic care presents to our society. New public policies and innovative service delivery systems are desperately needed. Our current bureaucratic, fragmented service delivery system significantly limits services and resources to individuals with brain injuries and their families. While this system may achieve the short-term goal of containing expenses, it’s proving to be inefficient and ineffective in addressing the long-term issues related to brain injury. For example, in 1991, the Texas legislature created the Comprehensive Rehabilitation Fund (CRF) to be utilized for rehabilitation of persons with TBI and SCI. The CRF generates approximately $10 million annually and are the only designated source of state funds for brain injury rehabilitation. It was reported that in 2003 approximately $6,000,000 of the fund was spent on residential care for up to 6 months. In 2004, it is estimated that 363 people will be served by the almost $10,000,000 fund. In a state where there is an estimated 381,000 Texans with brain injuries already living with disabilities6 and 5,728 new TBI-related disabilities each year7, a $10,000,000 fund that serves only 363 individuals appears highly
inadequate. One should ask, “what happens to the other 5,365 individuals with severe TBI after acute care? While funding 6 months of residential care for some individuals may prove appropriate and beneficial, for others who are 5,10, 15, 20+ years post injury it may provide little more than very expensive respite care for the family. Since the inception in 1991, the fund has remained largely unchanged in its role and services provided. It is challenged that the current limited use of the fund for short-term residential rehabilitation is largely ineffective and inefficient to address a large population of individuals requiring diverse services and resources. Less expensive and more applicable long-term services should be investigated that can serve a larger number of individuals. It is the responsibility as professionals in brain injury to provide oversight and direction to determine the best use of public and private resources to meet the short and long-term needs of individuals in our states.
So what are some steps to take? 1. Acknowledge severe brain injury is a chronic disability for millions of Americans 2. Create viable long-term service delivery models that effectively and efficiently utilize public and private resources. 3. Include more long-term issues in conferences, journals and books 4. Create greater awareness and understanding in society, and with our legislators about the long-term implications of brain injury. 5. Join hands with other organizations with experience in chronic care such as Professionals with Personal Experience in Chronic Care, National Family Caregivers Association, National Guardianship Association, National Academy of Elder Law Attorneys, and Family Caregiver Alliance 6. Advocate for long-term public resource for brain injury. 7. Require insurance carriers to clearly define what is covered in catastrophic injury and long-term care. Acknowledging a severe brain injury as a chronic disability does not mean accepting the person cannot get better. To the contrary, it means planning for the future and establishing the support systems to make life as good as possible. For brain injury to advance it is time to join hands and forces with the other estimated 50 million individuals living with chronic disability in the U.S5. In summary, until we recognize severe brain injury as a chronic disability, it is unlikely we will see advances in services, funding, public policy, or public awareness. Today, there remains very little attention or discussion about longterm issues in brain injury in the literature or at professional conferences. There is a clear and compelling need to address these lifespan issues, including publicly funded respite and home care services, family counseling and support, and educational programs that include issues such as guardianship, and medical special needs trusts. In order to meet the diverse challenges presented by catastrophic brain injury, a holistic chronic care approach needs to be established that keeps an ongoing support system in place that promotes the individual to live in meaningful ways. No family should be expected to carry the responsibility and burden of chronic care alone. Brain injury must become part of a broader effort to create and maintain a viable chronic care delivery system that supports individuals with TBI with their family, in the community and society as a whole.
ABOUT THE AUTHOR David Seaton is CEO and Owner of LiveOak Long-term Living Programs in Austin, Texas. He has more than 20 years experience working in brain injury rehabilitation. He is a graduate of The University of Texas and completed his graduate studies in Rehabilitation Counseling. He is the President of the Seaton Foundation, which provides brain injury education and training programs for families and professionals on issues related to long-term planning. He currently serves on the Board on Directors for the Texas Traumatic Brain Injury Advisory Council.
REFERENCES 1. Centers for Disease Control and Prevention: Traumatic Brain Injury in the United States: A Report to Congress, 1998. 2. Max W, MacKenzie EJ, Rice DP. Head injuries: costs and consequences. J Head Trauma Rehabil 1991;6:76-91. 3. Berkowitz M, O’Leary P, Kruse D, Harvey C. Spinal Cord Injury: An Analysis of medical and social costs. New York: Demos Medical Publishing Inc., 1998. 4. Brain Injury Association of America, Inc., Public Perceptions of Brain and Head Injuries, Harris Interactive, 2002. 5. Thomson, L. Long-term Care: Support for Family Caregivers. Issue Brief. Long-term Care Financing Project, Georgetown University: Washington, D.C., March, 2004. 6. Brain Injury Association of Texas web site, Brain Injury Statistics. October, 2004. 7. Federal Traumatic Brain Injury Program State Grant Fact Sheet, Texas, October, 2004.
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north american brain injury society supporters (through 4th quarter, 2004)
CHAIRMAN'S COUNCIL Julian and Kim MacQueen, Robert and Karen Voogt, Anthony Gamboa SUSTAINING MEMBER Michael Bee, Carlton Bennett, Joel D. Bieber, Gordon Johnson, Thomas Keefe, Dale K. Perdue, Randall Scarlett, Bruce Stern, Mariusz Ziejewski CONFERENCE, CORPORATE AND GENERAL SUPPORTERS Timothy Titolo, Brain Injury Law Center, Harrell & Johnson, P.A., Creative Capital, Vocational Economics, Charles Haynes, Michael Pietrzak, Margaret Roberts
Quality Living
Quality Life
Residential & Supported Living for Individuals with Brain Injuries
SAN MARCOS, TEXAS w w w. t c - t x . c o m David Seaton, CEO • ds@tc-tx.com • 512.371.1078 8
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Tree of Life provides state of the art, community-based neurorehabilitation services for persons with acquired brain injury including those with chronic pain diagnoses. We offer supervised supported living as well as transitional rehabilitation services. The Habit Retraining Model serves as the core neurobehavioral intervention with functional task analyses as the primary retraining method. Assessment and treatment are individualized using an integrated biopsychosocial model. Tree of Life strives for unsurpassed commitment to improving functional abilities and quality of life for even the most challenging clients.
Key Elements of Our Program Include: • On-site medical supervision by internationally respected, brain injury specialist, Nathan D. Zasler, M.D. • Neuropsychological and behavioral management supervised by Michael F. Martelli, Ph.D. • Case management services • Vocational and avocational skill development • Community re-entry training • Therapy services including occupational, physical, speech and nutritional therapy • Community networking with multiple client support services
“The greatest pleasure in life is doing what people say you cannot do.” Walter Bagehot
The goal of Tree of Life is to build upon the strengths of clients through compassion, innovation and expertise. For more information, please contact us at 1-888-886-5462 or by e-mail at info@tree-of-life.com.
Living Assistance for Persons with Acquired Brain Injury Tree of Life, L.L.C. 10120 West Broad Street • Suite H • Glen Allen, VA 23060
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Skill Acquisition and Automatic Process Development after Brain Injury: A Holistic Habit Retraining (HHR) Model for Community Reentry
by Michael F. Martelli, PhD, Nathan D. Zasler, MD and Patricia J. Tiernan, RN I. INTRODUCTION Persistent cognitive, emotional and behavioral dysfunction following brain injury present formidable challenges in the area of brain injury rehabilitation. This article reviews a model of community based neurorehabilitation, along with illustrative methodology, that conceptualizes brain injury sequelae in terms of disruption of previously established habits that are hierarchical, interdependent and underlie all efficient, adaptive living skills. In this paper, a Holistic Habit Retraining (HHR) model and methodology of neurorehabilitation (Martelli, 2003; 2003) is eluciated which issues from: The “automatic learning” and “errorless learning” literature and recent supportive evidence of skills relearning after brain injury; A task analytic examination of acquisition of relevant habits as a model for building skills retraining protocols; Analysis of organic, reactive, developmental, and characterologic obstacles to, and facilitators of, strategy utilization; and A strategy for promoting rehabilitative strategy use adapted to acute neurologic losses, an individual’s inherent reinforcement preferences and coping style, and reliant on naturalistic reinforcers which highlight relationships to functional goals, utilize social networks, and employ a simple and appealing cognitive attitudinal system and set of procedures. Holistic Habit Retraining (HHR: Martelli, 1999; 2002; 2003) offers a model and methodology for continuing community based neurorehabilitation that integrates psychotherapeutic strategies as necessary rehabilitation process ingredients. As such, HHR reduces the complexity of both doing psychotherapy with persons with acquired neurologic disorders and identifying and facilitating accomplishment of meaningful individual goals through optimal learning procedures. HHR does this by simplifying and integrating the processes and methods of interdependent goal accomplishment in psychotherapy & rehabilitation. The HHR Model of Rehabilitation presents practical, utilitarian strategies for retraining adaptive cognitive, emotional, behavioral and social skills, as well as strategies for overcoming common obstacles to utilizing methods that promote effective habit acquisition. II. Rehabilitation and the Holistic Habit Retraining (HHR) Model: Rehabilitation is Relearning. The understanding of brain function may not be complete, but we do know that the ability to learn and store information and execute tasks related to that learning is dependent on intact brain cells. Damage to brain cells that 10
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occurs in acquired brain injury (ABI) can diminish or delete the stored knowledge and habits that sustain important human abilities. Fortunately, even though damage to brain cells can erase the stored knowledge and habits associated with them, the ability to re-learn is seldom destroyed. Importantly, human beings are equipped with a highly evolved brain that makes them the greatest learning organisms ever to roam the earth. While animals are controlled by instincts, human behavior is driven by complex learning and the establishing of a network of complex habits. From the time of birth, human behavior is predominantly shaped by learning. Everyday functioning becomes increasingly sophisticated through the construction of a complex sequence of hierarchically arranged habits with more complex habits built on top of more basic habits. The complex behaviors that make up the average persons everyday behaviors are performed efficiently and automatically because of the establishment of a hierarchy of habits acquired through incremental learning. The important role of habits was recognized by William James, the father of American Psychology, who referred to them as the flywheel of society (James, 1890). The capacity of the human brain to convert repeatedly performed behaviors into habits is the mechanism of neural plasticity which allows the learning of complex behaviors that can be performed automatically. This ability of the human brain to manufacture habits and produce its own learned instincts enables man to perform tasks automatically while concentration, energy and effort are freed up for other tasks. At the same time, damage to neural tissue can weaken or erase some of the most basic acquired habits of adaptive living. Everyday abilities and routines can be seriously disrupted while efficiency is lost. What was once automatic can require an enormous amount of effort, as if the tasks were being performed for the first time, before efficient ways of performing the components of daily activities were learned. Fortunately, even if very basic and important learned habits are erased, newly learned habits can be developed as replacements. Importantly, we know the primary requirements for both learning and relearning. Our emotional state, our attitudes and our expectancies constitute some of the most important variables relating to how much can be relearned, and how well habits can be replaced (e.g., Wood, 2004; Martelli, in preparation). Emotions and attitudes can either promote and guide re-establishment of new habits, or prevent their development. If we think or expect that we cannot learn, if we think only the old learning/ way of knowing how to do things are sufficient, or if we think that only children can or should learn, we will undermine relearning. Such attitudes contaminate relearning and are poisonous to rehabilitation. In the HHR model, the essential ingredients for relearning and reha-
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bilitation can be roughly summarized in three basic components, the 3 P’s, or the Plan, Practice and Promoting attitude: The Plan component is a prescriptive strategy or design for stepwise progress toward relearning a desired task or behavioral sequence. Plans are derived from thorough functional task analyses. Functional task analyses are the most relied upon building block of relearning and involve breaking seemingly complex tasks down into simple component steps, and demarking them on a checklist that can be followed in a list wise fashion. Clearly, the more specific, concrete, and conspicuous the prescription for successful task completion, the more likely the plan can be effectively utilized. The Practice, or repetition component, involves repeated and consistent trials of practice, conducted over many weeks to months. It is the cement for learning that makes complex, challenging and cumbersome or boring tasks more automatic and effortless. This is the habit manufacturing process stage. With practice and repetition, even complex tasks become automatic and habitual. That is, a habit, or our automatic robots, can perform many tasks for us without special effort, energy, concentration, memory, or other cognitive demands. The Promoting attitude (or facilitative attitude) component fuels the prerequisite mobilization and persistence of energy for sustaining the repeated practice necessary for establishing reliable skills learning. Sustaining motivated practice over numerous repetitions, sometimes very many, and over a progressive series of challenging sequences, is required to achieve automaticity in performance of adaptive task sequences and behavioral habits. The promotional attitude facilitates and shapes continued practice, incremental (baby step) expectancies and self-reinforcement for incremental gains. It fosters resistance to such adaptive attitude challenges as significant anger, frustration, depression, fear, pessimism, feelings of victimization, self pity and, importantly, the kind of low grade chronic despair that is frequently left over from the early post-injury experience of being confronted by overwhelming deficits. Perhaps the greatest obstacle to learning or relearning is the redirection of energy away from sustained goal directed activity and toward debilitating activity. Some of the most potent relearning or rehabilitation debilitating attitudes, or poisons, are depression, anger and resentment, feelings of victimization, fear, and inertia. These are the obstacles that not only redirect energy away from relearning, but inhibit it. They reflect the catastrophic emotional reactions following brain injuries that represent significant internal obstacles that must be removed as barriers before the very challenging process of relearning can be optimally achieved (Miller, 1998, 2000; Martelli, 2003). III. The Catastrophic Reaction Central postulations in the HHR model are that significant emotional reactions typically follow neurologic injuries, that these reactions often exert persistent negative influence, and that they require treatment to optimize rehabilitation. Early after injury, the discovery of traumatic loss of abilities and accustomed aspects of the self can be overwhelmingly devastating to the affected individual. The sudden loss of function in a limb, the inability to stand or the inability to control one’s bowels or express a need through speech or understand another persons words can produce a powerful reaction characterized by incredible despair and distress. This response has been observed after left hemisphere stroke, other strokes, brain injury and other neurologic insults and was labeled the “catastrophic reaction” by Kurt Goldstein (1939, 1995). The acute despair that is initially experienced usually becomes less acutely manifested over time, although much of it can remain just below the surface. For example, it can be expressed in significantly reduced frustration tolerance (Prigatano, 1987) and aggravated by fatigue and metabolic changes (Sbordone, 1990). The catastrophic reaction described by Goldstein was best captured in the extreme catastrophic emotion he observed in patients after left- hemisphere lesions. When faced with unsolvable tasks, states of ordered behavior decompensate into catastrophic reactions showing all the characteristics of acute anxiety. He viewed this as the person struggling to cope with the challenges of the environment and his/her own changed body. Goldstein argued that the person could not be divided into “organs” or “mind” & “body”, and defined disease as a changed state of adaptation with the environment versus tissue damage. This early biopsychosocial conceptualization posited that “healing” came from adaptation to conditions causing the new state of person-environment interaction, and not through “repair”. As previously noted, passage of time is accompanied by decreased acuity of the catstrophic reaction. Although “adaptation” may explain decreased salience of catastrophic reactions, observations of patients over long periods of time suggests that less visible catastrophic emotional reactions can continue to operate on persons long after injury and even inter-
minably. The catastrophic reaction can be frequently maintained or recapitulated through the continued confrontation of injury related deficits and requirement for chronic compensatory efforts (e.g., Hopewell, 2001; Prigatano, 1997; Prigatano, 1999; Martelli, 2003). Clearly, continued confrontation of residual deficits and the chronic compensatory efforts that follow injuries, even though less overtly expressed, can create the kind of anxiety, frustration and resignation that converts progress inspiring hope and energetic efforts to feelings of powerlessness, helplessness and being overwhelmed by the challenge of coping. In the HHR model, the remnants of early catastrophic reactions are seen as frequently underlying the negative, energy consuming emotions that deplete the precious energy, hope and persistent goal directed effort necessary for successful goal achievements. The most critical tenet of the habit retraining model is the postulation that persistent catastrophic emotional reaction is a frequent but often subtle impediment to adaptation that must be resolved in order to optimize rehabilitation. Further, considerable observational data and as yet unpublished case reports collected by the authors, along with emerging research reports in related areas (e.g., Taub, Uswatte & Morris, 2003; Taub, Crago & Uswatte, 1998; Sbordone, 1990) indicate that the gains that can follow resolution of the catastrophic reaction, when combined with the most facilitative retraining, can be impressive improvements in functional status and adaptation even many years after injury. The conceptualization of many mental health and rehabilitation syndromes as reflecting problems in adaptation and coping with injury is certainly not new. Miller (1998; 2000) has nicely summarized the empirical and theoretical work in the area of post traumatic accidents that produce long-term demoralizing disability and conceptualized the group of traumatic disability syndromes as “neurosensitization syndromes”. Disorders such as persistent postconcussion syndrome, chronic pain, posttraumatic stress disorder, depression, and others, share common pathophysiological mechanismas and are hypothesized to develop as the result of progressively enhanced sensitivity or reactivity of central nervous system (CNS) mechanisms causing persistent CNS changes. These syndromes are frequently comorbid and can create vicious cycles of impairment and reduced quality of life. A primary mechanism in the perpetuation of disability in these disorders is an avoidance of stimuli that evoke anxiety and emotional distress. The idea that persistent emotional distress must be reduced in order to improve functional adaptation in many mental health and rehabilitation disorders is also not a new idea. For example, Miller (1998; 2000) notes that the same classes of psychotropic medications are usually the first stop gap measures for most of these disorders, while psychotherapy is usually the treatment of choice. Dubovsky (1997) describes that the psychotherapy relationship “splints” neurophysiological regulatory mechanisms and provides a repeated corrective stabilization that eventually allows normal functioning. Ben Yishay (2000) has devised a system of holistic neuropsychotherapy which is the central part of his rehabilitation program and Prigatano (1987, 1999) has strongly articulated the importance of psychotherapy for facilitating post injury adaptation. In the HHR model, resolving the persistent catastrophic reaction is seen as a prerequisite to rehabilitation and is integrated into the rehabilitation training process. The HHR rationale and method for resolving the persistent catastrophic reaction comes largely from the research literature on learning (e.g., Schachter, 1996), cognitive-behavioral psychotherapy, and coping with anxiety, especially procedures involving graduated exposure and cognitive restructuring (Masters, Burish, Hollon & Rimm, 1987). In HHR methodology, resolving the persistent catastrophic reaction involves three integrated components: 1) Confronting deficits in an incremental manner in order to prevent being overwhelmed by distressful emotion, through graduated exposure. 2) A supportive conceptual framework and rehabilitation methodology that bolsters hope and includes self-instruction to reinforce graduated successes in very incremental goal achievement toward desired goals. 3) A rehabilitation methodology that emphasizes errorless learning and task analyses, as described below, in order to simplify reacquisition and habitualization of many basic adaptational skills while minimizing anxiety and distressful emotions associated with failure. The HHR methodology is designed to promote learning through calming the central nervous system and decreasing the significant anxiety and negative emotional states which are consistently shown to be disruptive to performance and learning (e.g. Ormod, 1999). It specifically focuses on decreasing the catastrophic emotional, cognitive and neurophysiologic reactions that would block optimal relearning. At the same time, it is designed to counter residual BRAIN INJURY PROFESSIONAL
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learned avoidance responses that may have been conditioned in the remote past when catastrophic reactions were more potent and conspicuous The summary of many years of attempts to identify adaptive, rehabilitation promoting attitudes characterized by rehabilitation patients who were able to achieve remarkable progress despite seemingly insurmountable odds, is included in the “Five Commandments of Rehabilitation”. These commandments serve as a primary prescription for countering the catastrophic emotional reactions that block optimal rehabilitation achievement. They are integrated in a model that prescribes that the optimal confrontation of deficits must occur: (a) incrementally, to reduce being overwhelmed by their magnitude; (b) with a methodology that promotes graduated successes through incremental expectancies, accurate self monitoring and incremental self reinforcement and is necessarily integrated with a supportive conceptual framework that reduces debilitative emotional reactions and allows adaptive reinterpretations of experience to promote hopefulness, self efficacy and self-esteem. Importantly, the envisioning of a progressively more desirable future is the guiding principle and psychoemotional magnet in HHR that pulls persons toward their goals. Incremental movement toward desired goals can be achieved to the extent that a person focuses on the vision of a desirable future, breaks expectancies and goals into small, progressive steps, and develops rehabilitation habits that facilitate persistent and stepwise, goal directed efforts. Patterns of interpreting events and expectancies about how things will turn out represent predictions of the future. Habitual patterns of expecting failure or dissatisfaction, or mistreatment, and habitual patterns of becoming depressed, angry, fearful and/or resigned are energy depleting debilitative habits that reinforce disability and failure. In contrast, the single best remedy, or antidote, is a habit that reinforces self-esteem through graduated successes. This facilitative habit is summarized in the “Five Commandments of Rehabilitation” (Martelli, 1999). Making accurate comparisons, learning new ways to do old things, building one self up and employing positive self-coaching, and viewing rehabilitation as a series of small steps each requiring celebration, are some of the important attitudinal prescriptions offered by “the commandments”(see Table 1). The antidotes included in the “Five Commandments of Rehabilitation” are the medicines that interrupt the rehabilitation poison cycles. Importantly, energy tends to be self propagating in a cyclical fashion. If it proceeds in a negative direction, in catastrophic negative interpretations and expectations, more and more energy will be expended nonproductively. This direction of energy depletes it and redirects it away from allocation toward adaptive relearning and rehabilitation accomplishments. For example, a habitual depressive response to physical losses can reduce activity, prevent adaptive relearning, and reinforce more depression by depletion of brain chemicals associated with positive mood and energy. More depression, in turn, leads to poorer progress and more reason to be depressed. Antidotes like the “Five Commandments”, a positive vision of a gradually improved future, and planning and practicing compensatory behavioral selfcontrol strategies serve to protect the rehabilitation reserve by inoculating persons against depression, anger, and destructive emotion. This ensures that energy and motivation will be available for the persistent pursuit of desired goals, with each step of progress adding new hope, self-efficacy, energy, and effort for the next step. With the addition of task analyses and scheduling to help promote routines, energy is increasingly turned toward protecting the rehabilitation energy reserve through adaptive interpretations and expectancies. Consistent repeated practice turns these rehabilitation promoting strategies into increasingly automatic habits that allow achievements that further strengthen them. To reiterate, anything that is consistently repeated will become a habit. Therefore, the HHR model promotes the attitude and activity routines that will produce facilitative habits that turn energy toward protecting attitudes, taking antidotes, and letting healing reserve help nudge patients toward their goals.
the incorporation of such treatments as constraint induced movement therapy into clinical practice, for increased research efforts exploring treatment induced plasticity in the nervous system and for guiding the training of neurologists and other practitioners. Some of the most powerful evidence relating neural plasticity and rehabilitation efficacy comes from recent research on constraint induced movement therapy (CIMT). CIMT grew out of animal research that has been expanded to humans (Taub, 1977; Taub, Crago & Uswatte, 1998; Kunkel, Kopp, Müller, Villringer et al, 1999; Taub, Uswatte, Morris, 2003). CIMT techniques induce patients with stroke, brain injury and other types of injury to practice using an affected limb on an intensive, concentrated or massed practice basis for consecutive weeks, usually >= 6 hours/day for approximately 2 weeks) while constraining use of the less-impaired arm (for 24 hours/day). Demonstration in controlled studies show substantial functional improvements in the actual amount of use of the more-impaired arm in activities of daily living coincident with a large use-dependent cortical reorganization that substantially increases the size of the cortical motor control areas for the affected limb. Continuing research indicates that the concentrated intensity of retraining efforts is the most critical component in CIMT. Further, the demonstration of improvements in humans many years after injury, along with creative research on monkeys, indicates that a significant portion of disability is explained by “learned non-use”. Taub (Taub, Crago & Uswatte, 1998) notes that in the early period post injury, initial inability to use a body part produces failure and punishment for use attempts versus rewards for using other body parts. Subsequently, after resolution of original acute organic damage and return of potential for retraining and regrowth for body part use, the powerful learned inhibition of movement persists, and usually permanently. CIMT has demonstrated that this learning can be reversed. Taub’s research has described that an organism learns to discontinue use attempts early post injury because of incoordination, pain and the punishing effects of repeated failures. Similar to Seligman’s learned helplessness model of depression and coping (Seligman & Isaacowitz, 2000), this demonstrates that learning and expectancy are extremely powerful determinants of behavior and health. Moreover, this demonstration provides strong evidence that the “catastrophic reaction” to impairments is a residual effect of injury and that emotional reactions and learning strongly influence the course of disability. Importantly, the CIMT research provides empirical support for Goldstein’s observations and biopsychosocial model indicating that neurologic disability following an injury is more of an adaptational phenomenon than a
IV. Neuroplasticity, Rehabilitation and Relevance of the Catastrophic Reaction In an editorial in the British Medical Journal, Richard Greenwood (2001) summarized the recent explosion of research into the three “R”s of restorative neurology: how Retraining reorganizes neural circuits and networks; the Replacement of cells and chemical messengers; and Regrowth of axons, dendrites, and synaptic connections. From both animal and human research, it is now known that remodelling of the cortex and other parts of the brain and spinal cord after brain lesions is not only possible, but use-dependent and task-specific. This remodelling explains why functionally useful rehabilitation and retraining techniques can work. It is the basis for his call for hastening
Rehabilitation is appropriately viewed One Step At a Time - by focusing on the gains over where we were when we were one step behind where we are now, we can focus on the Graduated Successes and feelings of accomplishment (despite giant obstacles) which will leave us feeling proud and hopeful and enable us to focus and reach the next small step ahead, and make progress through the many small steps necessary to make substantial progress. Focusing on our current gains and small steps of progress (compared to where we were earlier in rehab and when we were at our worst) will build hope and a sense of challenge and growing victories (versus comparing ourselves to before the injury, which only makes us feel sad & depressed. Inch by Inch & It's a Cinch. Meter by Meter, Life is Sweeter.
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TABLE 1
Five Commandments of Rehabilitation
Commandment 1: Thou Shall Make Only Accurate Comparisons. Thou shall not make false comparisons. That is, it is only fair (and adaptive) to compare oneself to persons with similar injuries, illnesses, disabilities and stress. It is unfair to compare ourselves to others without similar challenges, or to ourselves before we were challenged, as this makes us look poor by comparison. It is fair, however, to compare ourselves to others of similar injury, challenge, age, etc., as this comparison allows us to accurately measure ourselves. Commandment 2: Thou Shall Learn New Ways to Do Old Things. Learning new ways, or finding another way to do desired tasks, vs. giving up & feeling hopeless because the old way doesn't work, is the key to Challenging obstacles and overcoming them. ...Overcome Thinking that the old way is the best way (i.e., Stinking Thinking) Commandment 3: Thou Shall Not Beat Thyself Up...Instead, Thou Shall Build Thyself Up! We clearly understand that when we have a physical injury, such as a broken leg, getting mad, yelling at, or hitting (i.e., beating up) the leg only delays recovery, increases symptoms and pain, and makes us and the leg function worse. We know that pampering the leg, massaging it and coaxing it along gently & patiently will help it recover. Unfortunately, we too often forget that our brains are similar. An injured brain will perform poorly when we get mad with it, or get frustrated. Instead, understanding it, pampering it, being patient, using pacing & coaxing it along in a supportive way will help us function our best, and help our recovery and rehabilitation. Talking to ourselves in supportive and understanding ways (vs. getting mad at ourselves for being injured) and coaxing things out gently is a good way of building ourselves up in order to face the challenges of rehabilitation. Rewarding ourselves for efforts and each small step of progress, despite tremendous obstacles & challenges, is the best way to build ourselves up! ...Child & Spouse Abuse are recognized as illegal and immoral....Self Abuse is just as bad! Commandment 4: Thou Shall View Progress as a Series of Small Steps.
Commandment 5: Thou Shall Expect Challenge & Strive to Beat It. By Converting Complaint (I don't want) To Challenge (I want), We Can Shape Our Future Through Our Vision and Driving Thoughts. We will actively shape our future by focusing on a vision of hope, challenge, control & satisfaction. By changing our focus from complaint and feelings of victimization & helplessness & pessimism, we can avoid giving up and giving in to a pessimistic prophecy of dissatisfaction and doom. (cf. "Thou Shall not Pretend to Have a Contract Guaranteeing Freedom from Injury, Disease, Illness or Unfair circumstances or Significant Stress!")
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Task Analysis Samples
'Making A Bed'
TA Samples: Single Tasks 1. Strip sheets, blankets and pillow cases 2. Put blankets and pillows on table 3. Take break 4. Get sheets and pillow cases from closet
At This time, doing with Mom: 5. Put on fitted sheet 6. Put on top sheet, evening it out 7. Put on blankets and tuck in corners 8. Put pillow cases on pillow 9. Put comforter on bed
canister handle 1. Remove Cleaner and Parts From the Closet floor brush hand brush crevice
Vacuum Cleaning Task Analysis
2. Unwind Power cord
3. Decide task
carpets wood/vinyl floors hand dusting change dust bag
4. For Carpets
attach power handle adjust carpet level on canister turn on power vacuum first in main traffic paths and then to the sides turn off power
5. For Hard Floors
attach long handle brush turn on power vacuum from the center outward turn off power removee handle clean brush head with vacuum power
6. For Hand Dusting
attach brush head to hand grip turn on power carefully dust all surfaces turn off power remove brush and clean it with vacuum handle
7. Change Dust Bag
when red light on canister comes on, or check monthly when bag supply is low, purchase more at Sears. Bring code# to store. open canister, carefully pull bag off attachment. place dirty bag carefully into the trash put new bag following reverse procedure
8. After Cleaning
recoil power cord into canister store all parts in the closet
Eat Dinner PRN (PowerRelaxationNap; Use Tape) Engage in Evening Activity 10:00pm: Complete Chart (Behavioral Activity Monitor & Tally Pts) Shower (if not done in am; or, again?) Watch TV News Prep for Bed (PJ's, Brush Teeth, etc.) BedTime
Fill Out Chart (Behavioral Activity Monitor & Points) Clean Countertops Daily Sweep Floor Daily Organize Cabinets & Wipe off Ice Box Every Weds Mop Floor & Wipe Walls
AFTERNOON
Wash Face Shave Apply medication to face if needed Brush Teeth Comb Hair Dress before "morning" nap Check finger nails & toe nails; trim when needed Check hair length and get a haircut as needed Shower and wash hair Perform an Activity/Chore (Choose from Menu) Check Schedule (e.g., M,W,F=Y; Tues=RedX) Check your appearance before leaving the house
BEDROOM
MORNING
TA Sample: Daily Habits & Routines
AT's Initiative/Energy Retrainer
V. Errorless Learning There are a growing number of studies that consistently demonstrate effectiveness of errorless training methods for teaching skills to impaired individuals who were previously unresponsive to trial and error teaching. Evidence for errorless strategies was initially presented for persons with severe learning disabilities and dementia, but has recently emerged in the treatment of persons with aphasia, Parkinson’s disease, schizophrenia, autism, and many other neurologic and neuropsychiatric disorders. This includes an increasing number of studies demonstrating efficacy and relative superiority over traditional trial and error methods in treatment of persons with significant memory problems following brain injury (Glisky and Schacter, 1989; Verfaellie, Cermak, Blackford and Weiss, 1990; Leng, Copello and Sayegh, 1991; Schachter, 1996; Squires, Hunkin and Parkin, 1997 Clare, Wilson, Carter, Roth and Hodges, 2002; Kern, Liberman, Kopelowicz, Mintz & Green, 2002; Ducharme, 2003; Kessels and dee Haane H, 2003; Masters, MacMahon and Paul, 2004; Schmitter-Edgecombe and Beglinger, 2001). Errorless learning strategies are straightforward and relatively simple. They involve preventing persons from making either most or all errors during learning trials. Necessary assistance and support is offered to ensure successful task completion. Assistive cues can take the form of task analytically derived checklists (see below) or through verbal instruction. For example, in the “method of vanishing cues”, maximum cues are provided and progressively withdrawn only as not needed for successful task performance. The reduction in the number of competing memory traces and elimination of frustration and distressful emotional responses is associated with improvement in memory and learning performance. In contrast, traditional learning methods include trial and error procedures and involve effortful supposition and guessing. Although errorful methods can be very effective for unimpaired learners, they can tax and overwhelm persons with compromised attentional, memory and/or executive skills. In persons with these deficits, failure recollections interfere with recall of successful efforts in a limited memory store, while learning can be further undermined by requirement for recalling and discriminating component task steps for memories of successes versus failures. Further, failures typically produce frustration and distress that is especially inhibitory to learning in persons with brain injuries, given frequent reductions in attentional capacity and frustration tolerance and vulnerability to rekindling patterns of catastrophic reactions to deficits. In errorless learning, only correct and successful
TABLE 2
EVENING
simple reflection of diseased brain tissue. The adaptional nature of disability is also supported by a very recent research report that investigated and offered direct empirical support for anxietyrelated avoidance of activities after brain injury (Riley, Brennan & Powell, 2004). Most important for the HHR model, CIMT and other emerging research provides strong and accumulating evidence that catastrophic reactive emotional distress following injury can suppress rehabilitation, and that this suppression can be reversed.
KITCHEN
15:12
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Fill Out Chart (Behavioral Activity Monitor & Points) Eat Lunch PowerRelaxationNap (PRN; Use Tape) Perform Activity or Chore (Choose from Menu)
Fold clothes or hang them up and store where appropriate. Daily Sweep and vacumn floors when appropriate or prn Organize computer area Empty cat box daily Mop floors when appropriate prn
Sweep floor Vacuum daily etc... BRAIN INJURY PROFESSIONAL
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Task Analysis Samples (continued)
GENERAL
Dust around the Mirror and Light and Window, including the tops of the light and mirrors and window sills. Dust, with a damp cloth, around the windows ills, on the front of the blinds and the back (reverse sides by adjusting slats up and down), and along the tile division.
TUB & TOILET
Wipe down the bathtub walls, going to the ceiling. Use cleanser and a brush to quickly wipe grime in the tub, and scum stains on the wall. Use soapy brush to quickly wash and rinse the inside shower curtain. With a soapy disinfectant, clean the toilet top, seat, behind the seat, and under the seat, along the walls to the floor Fold all towels neatly on the towel racks
FLOOR
Sweep the floor, including behind the toilet. Take out the rug and shake it off of the porch vigorously to remove dirt and dust. Remove and empty the garbage can. Mop the floor, using ammonia or Clorox and be sure to get behind the toilet. Use a rag to get the floor behind the toilet. Be sure to get in all the nooks and crannies along the edges of the floor, near the tub, etc.
Kitchen
Dust dresser tops, around doors and windows, and along baseboard and ceiling molding Same for Study/Office and Dining Room... 9:00am Saturday: Take Clothes to Dry Cleaners before 10:am 5:00pm Saturday: Pick up clothes from Dry Cleaners and Arrange in closet 10:00am Sunday: Launder socks, underwear, bathroom towels, bed sheets, etc. 11:00am Sunday: Use Dryer & Fold & replace clothes when done. Hang Dry other clothes 11:20am Sunday: Steam mist to refresh any pants, shirts in need Sunday 9:00pm: Fold, hang, put away dry clothes
Cleaning Schedule
Empty Trash Can Clean Top of Refrigerator and Microwave (Wet Soapy Cloth) Clean Inside Refrigerator and Microwave Wash Any Dishes and Clean Sink with Cleanser Clean Sink and Surrounding Countertop Sweep, and then Mop Floor
Bedroom
Dust Furniture, including all shelves Use broom/duster to dust along all baseboards, window sills, ceiling molding & fireplace mantle Sweep and Vacuum Under Rugs Sweep and Vacuum Floors Vacuum the couch, love seat, and chair
Laundry
Living Room
Bathroom
Single Male Professional Chores CheatList
A: Daily duties: Straighten up each room B: Calendar: Bathroom and Floors on Tuesday pm__; LR, Kitch on Wed pm__; Study, Dining, BR on Sat am__
Relax
2. REHAB CENTER
wash dishes wipe off countertops, stovetop; rinse out sink sweep floor; mop if needed Change or empty cat litter if needed Vacuum Carpet/Rugs if needed Dust Furniture if needed
4. EVENING:
Dinner at Grandma's & take medication Home between 6:00-7:00PM Get mail, read & sort; put bills on microwave
Arrive between 7:30-8:00Am by van Follow Morning Schedule (In Rehab SchedBook) Lunch at 11:30, Take medication Follow Afternoon schedule Leave for Grandma's between 3:30-4:00
PREPARE FOR THE NEXT DAY Laundry if needed (clothes, sheets,bath/kit towels) separate colors and whites set water level put soap in put clothes in turn on put clothes in dryer - set timer for 45min Listen for Buzzer - fold when dry PUT CLOTHES AWAY: Drawers/Closets
6. BATHROOM if needed
Wake 6:00 AM to the Alarm Clock Take Medication Make Bed Shower Get Dressed Comb Hair Make and eat breakfast Clear, rinse, stack breakfast dishes (for pm wash) Wipe counter, table stovetop if needed Feed animals Brush teeth Gather items to take for the day Leave house at 7:00; go to Grandma's
clean sink, tub, countertop put toilet cleaner in toilet clean floor, mirror wash toilet inside and out change towels, mat, washcloths Check off things needed on list; write out list when going shopping -Keep list in kitchen drawer Pick & lay out clothes to wear for the next day
8. PREPARE FOR BED
3. LATE AFTERNOON 7. FREE TIME
5. KITCHEN
DH's Daily Plan Checklist
1. MORNING
TA Samples: Daily Activity Trainers
Floss/Brush Teeth Wash Face Shave Put away clothes (in hamper or drawer/closet) Set Alarm for 6:00AM
Importantly, the ingredients for rebuilding these automatic habits are the 3 P's: Plan, Practice, Promotional Attitude. The result is rehabilitation, or removing obstacles to independence while achieving incremental progress toward important goals.
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learning procedures are learned. This greatly simplifies the learning process. VI. Functional Task Analyses Model Task Analysis involves breaking any task or chore or complex procedure into single, logically sequenced steps and, typically, recording the steps in a Checklist (Jonassen, Tessmer, and Hannum, 1999). The checklist allows checking off each step as it is completed. Task analyses always make task initiation, completion & follow through much easier. Performing a Task Analysis and generating a checklist can greatly improve ability to perform tasks in persons with limitations in memory, attention, energy, initiative, ability to sustain performance, organization, or almost any other difficulty (Martelli, 2003). Task Analysis Checklists are also extremely useful in minimizing fatigue by reducing the demand for, and energy consumed by reasoning and problem solving associated with planning, organizing & having to recall, make decisions & prioritize appropriate steps and sequences for a task. Task analyses are useful for both basic and complex behaviors. Most importantly, Task Analyses allow re-establishing the efficient routines that make up normal everyday human behavior and activity. When the procedures assisted by Task Analyses are repeated consistently, they eventually become automatic [habits] and become as natural as tying a shoe. Samples of task Analyses are included in Table 2. Further illustration of the conceptual differences between traditional rehabilitation models and methodologies versus newer neurorehabilitation models is offered in Table 3 (Martelli, 1999). Model 1 is based on education and physical rehabilitation models, while Model 2 represents the post acute neurorehabilitation models from which HHR is generated. VII. Application of HHR Principles and Strategies An especially illustrative example of the early development of HHR comes from the example of JF, a 39 year old woman who was first seen 2.5 years status post craniotomy for resection of a very large pituitary adenoma that resulted in complete blindness, amnestic syndrome and numerous vegetative-metabolic disturbances. This former architect showed severe memory problems at 2.5 years post injury, was unable to recall the route out of the bathroom in the house in which she grew up and returned to be taken care of by her parents, was only able to conduct over learned activities of daily living with assistance. She had just been discharged from the state school for rehabilitation of the visually impaired due to inability to show any benefit from training. Virtually all health and rehabilitation professionals had deemed her incapable of new learning and recommended that her elderly parents institutionalize her. JF was seen at that time for a more focal and supportive approach to memory rehabilitation screening. Previously unable to demonstrate recall of any new information after 10 to 20 seconds, her memory was assessed in a relaxed atmosphere during discussion invoking her more intact remote memory. Numerous repetitions of the examiner’s name were conducted while recall was subsequently prompted after one minute with calming self talk and the following repeated phrases: “Patience, persistence, coax it out gently, build
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TABLE 3
A comparison of Traditional Rehabilitation Versus Newer Neurorehabilitation Models
FEATURE
MODEL 1
MODEL 2
Treatment Theory Base
Acute Rehabilitation Outpatient Rehabilitation Day Rehabilitation Physical / Industrial Rehabilitation Traditional Education
Post-Acute Neurorehabilitation Transitional / Community Reentry Neurobehavioral Rehabilitation Executive Skills Rehabilitation Progressive Special Education
Treatment Targets
Isolated Component Behaviors
Complex Behaviors
Treatment Goals
Restoration of Absent/ Deficient Behavioral Components
Compensation - Emphasis is with Integrating Complex Behaviors and Executing Complex Sequences
Treatment Method
Stepwise Component Skills Building
Task Analysis Based Compensation
Treatment Model
Simple - Assumes Sufficient Patient Skills, Participation & "Motivation" - Primary Determinants of Outcome are Patient Variables
Complex - Assumes Neurobehavioral & Executive Deficits, Catastrophic Reactions, Deficient Coping; Requires Specialized Behavioral Treatment Skills - Primary Outcome Determinants are Program, Therapist Variables
Therapist Role
Expert: Instruct, Direct, Teach Patient, Family Members
Reference/Collaborator: Guide & Shape Behavior of Client, Family Members, Life Skills Tutors (LST's), Liaisons, etc.
Prerequisite Therapist Skills
Technical Skills Competence in Physical Medicine & Rehab Disciplines
Technical & Behavioral Skills Competence (with personal adjustment, emotional stability & flexible problem solving style)
Treatment Setting
Analog - Tx exercises mimic class room, often reflect remote simulations, and offer indirect rewards
Real Life - Realistic, relevant Tx exercises with rewards that mimic life & are inherently rewarding to Client
TX Schedule
Part-time, during the work day
24 hours/day, Everyday
Ecological Validity
Training Setting and Functional Goal Relationships are Often Indirect
Training Setting and Functional Goal Relationships are Direct & Apparent
Vocational Training
Train & Place - Assumes Generalizability; e.g. Traditional VocRehab, Work Hardening
Place & Train - Assumes Specificity of Learning; e.g., Supported Employment
Performance on: a. Training Tasks in the Rehab Center b. Standardized Neuropsych & Other Office Tests
Performance on Everyday Activities: a. Home b. Workplace c. Community
Outcome Measures
yourself up, don’t beat yourself up...if it comes it will come in calmness and that will be okay, and if it doesn’t, that’s very, very good too, because you persisted without quitting and you have the best persistence I’ve ever seen”, along with lots of support, encouragement and instruction to breath slowly and deeply. Notably, this patient demonstrated her first documented successful recall of new information at about five minutes. Her second documented recall was that her memory had worked and that she had been able to eventually recall something, even if she couldn’t recall what. Over the next two years, with only twice weekly outpatient group attendance, and once to twice a week tutoring form a humorous and friendly volunteer, and instruction of volunteer and mother in repetition (e.g., “Three-Peat” - a timely term after the Chicago Bulls had won three consecutive NBA championships) and association enhancement strategies and “tiny step” expectations with positive shaping and liberal praise, she slowly showed increasing recall for more and more information. Increasing social activities were especially facilitative as they seemed to reawaken this previously very gregarious woman. During outpatient group attendance, she contributed to development of the “Five Commandments of Rehabilitation” by offering inspirational one liners which she coined or borrowed from Sunday television preachers. At four years post injury, she was re-accepted at the state school for the visually impaired for a one week evaluation for ability to benefit from a typing recording device. She essentially learned the basics of the device during the evaluation, to the staff’s true amazement. Two years later, she was typing 60 words a minute and had learned to use adaptive text-voice equipment and was volunteer-
ing and applying for jobs with the assistance of a job coach. JF’s case was conceptualized in terms of the suppression of memory by the subterranean catastrophic emotion experienced every time she attempted to recall information. JF was undoubtedly sensitized to distressful emotion by her blindness and in her repeated confrontations with it due to amnestic syndrome. JF could not be expected to endure the continued excruciating distress that must accompany repeated failed recollection efforts without expectation of success. However, when recollection efforts were incremented for a single, simple piece of socially relevant information and strongly supported through emotionally calming talk, it was discovered that she did possess at least some memory storage capacity with ability and some slow retrieval capacity after about five minutes. She subsequently recalled that her memory could work given patience, and this experience ushered in a hope that undoubtedly transformed JF through application of hopeful self talk that is now transcribed in the “5 Commandments” that she contributed to. In addition to JF, a couple of other illustrative HHR case studies are included on the VillaMartelli Disability Resources webpage, including an especially interesting one involving rehabilitation of severe dorsolateral frontal lobe based initiation problems (Martelli, Siegal and Zasler, 2002). Although space limitations do not allow review or discussion of other case studies, or even many specific HHR strategies, an instructive introduction to building rehabilitation protocols using the “3 P’s” approach is included in Figure 1. The included protocol segments illustrate samples of application of task analytic derived, errorless learning based skills building protocols (the
Plan), individually adapted reinforcement via a palatable cognitive attitudinal approach for countering inherent resistances to strategy utilization and practice (the Practice and Promotional attitude components) and promoting incremented goal achievement and reinforcement from graduated successes. Complete protocols and a larger sample of illustrative adapted strategies can be downloaded from the Villamartelli Disability Resources website (Martelli, 1999; 2000-2004). VIII. CONCLUSION HHR proposes a “habit” (instinct replacement) model of brain function and a “habit retraining” model of rehabilitation. It postulates that a major learning function of the brain involves “habit” manufacturing - that is, converting repeated behaviors that are functionally adaptive into efficient habits. For example, it is adaptive to remember how to walk, so the sequences involved in walking are chained together in a task analysis that makes it automatic so that performance requires minimal thought and energy. The same conversion occurs when such habits as attentional focusing, memory and multi-tasking are acquired and automated through chaining of the component steps. Through learning, tasks such as internally incorporating the tasks involved in getting dressed, or remembering what to take with us when we leave the house, or “who, what, when, where, how and why” in reading, or the “where we are going, what we are taking with us”, are acquired as habits through natural task analysis that sequences behaviors as if we were learning automatic task inventories. The same is true for self control habits ranging from initiation and awareness to inhibition, which involve the very complex chaining of multiple tasks to produce the highest level executive skills habits. Brain injury can significantly disrupt these previously acquired habits. It can remove general efficiency, greatly tax attention, sequencing, memory, reasoning and energy. It can decompensate adaptive functioning across a wide range of previously automatic skills. The “habit retraining” model posits that by performing and repeating the task analytically derived protocols for these functions, effective learning chains can be reestablished and automaticity achieved. In HHR, retraining methodologies are essentially task analysis derived (http://go.to/MFMartelliPhD) and these constitute the Plan of rehabilitation. Practice is the retraining vehicle for rehabilitation, and the most effective learning procedures are required. Finally, significant emotional responses to losses are conceptualized as the primary obstacle to relearning and rehabilitation. Hence the incorporation of psychotherapeutic principles is posited as an integral component for emotional desensitization and optimizing participation and benefit from rehabilitation strategies. Models similar to HHR allow an almost endless number of individualized facilitative attitudinal protocols to be designed to help optimize rehabilitation process and outcome. HHR parallels other holistic neuropsychotherapy models, but bears some notable distinctions. It is a parsimonious model – it is relatively simple to understand and apply and can even be summarized in this short paper. It offers an uncomplicated and intuitively appealing model and method for devising and individBRAIN INJURY PROFESSIONAL
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ualizing specific retraining protocols. Protocols exist for a broad range of relevant skills areas that afford utilization of intuitively appealing internal and external prompts and posters. Most importantly, HHR extends recognition of the importance of neuropsychotherapy by synchronizing it to compatible learning methods, integrating it as an integral and inseparable part of the rehabilitation process and exporting it to rehabilitation therapists and family members. HHR empowers therapists and family members as agents armed with highly potent neurorehabilitation specific learning and psychotherapeutic strategies. Finally, HHR’s purpose is to expand neuropsychotherapeutic rehabilitation beyond simple emotional adjustment and functional compensation to include promotion of neuroplastic based rehabilitation of cognitive, behavioral and physical capabilities. To download a complete presentation on HHR by the authors of this article, visit: www.nabis.org/hrr
ABOUT THE AUTHORS Michael F. Martelli, PhD directs Rehabilitation Neuropsychology at Concussion Care Centre of Virginia and Tree of Life. He has 17 years of experience in rehabilitation psychology and Neuropsychology, specializes in practical, holistic assessment and outpatient and residential rehabilitation of neurologic and chronic pain disorders, has several academic appointments, serves on several journal editorial review and brain injury related boards and is the current President of the Brain Injury Association of Virginia and a non-profit affordable housing program for traumatic CNS injury survivors, serves as the commissioner of psychology for the Commission on Disability Examiner Certification. He frequently lectures and publishes, with over 350 talks, papers, chapters and abstracts and maintains a very useful disability resource website: http://villamartelli.com. Nathan D. Zasler, MD, FAAPM&R, FAADEP, CIME, DAAPM, an internationally respected specialist in acquired brain injury (ABI) care and rehabilitation, is CEO and Medical Director of the Concussion Care Centre of Virginia and Tree of Life living assistance and transitional rehabilitation program in Glen Allen, Virginia. In addition to several fellowships, diplomats, academic appointments and distinctions, he has lectured and written extensively on neurorehabilitation issues and is very active in relevant national and international organizations. He has co-edited three textbooks (“Rehabilitation of Post-Concussive Disorders”, “Medical Rehabilitation of Traumatic Brain Injury” and “Rehabilitation of Functional Disorders”) and is currently working on several others including a TBI core textbook “Brain Injury Medicine: Principles and Practice”. He is on several journal editorial boards and is an editor of “NeuroRehabilitation: An Interdisciplinary Journal”, “The International Neurotrauma Letter”, “Brain Injury” and “Brain Injury Professional”. Patricia J. Tiernan, RN is currently the Program Director at the Tree of Life living assistance and transitional rehabilitation program in Glen Allen. She brings personal experience and awareness as the mother of a son who sustained a severe TBI. She has 22+ years of experience in development, operations and case management of rehabilitation services for survivors of brain injuries, primarily in community based transitional and long term support settings. She is trainer for the Certified Brain Injury Specialist Program and Chairperson of the Virginia Neurotrauma Advisory Board that reviews and awards grants related to medical research projects and expansion of community based services to survivors of neurotrauma, both TBI and SCI.
REFERENCES Ben-Yishay, Y. (2000). Postacute Neuropsychological Rehabilitation, in Christenson and Uzzell (eds.), International Handbook of Neuropsychological Rehabilitation, Kluwer Academic/Plenum: New York. Clare, L, Wilson, B.A., Carter, G., Roth, I., Hodges, J.R. (2002). Relearning face-name associations in early Alzheimer’s disease. Neuropsychology, 16(4), 538-547. Ben-Yishay, Y. (2000). Postacute Neuropsychological Rehabilitation, in Christenson and Uzzell (eds.), International Handbook of Neuropsychological Rehabilitation, Kluwer Academic/Plenum: New York. Ducharme. J.M. (2003) . “Errorless” rehabilitation strategies of proactive intervention for individuals with brain injury and their children. Journal of
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Head Trauma Rehabilitation, 18, 88-105. Greenwood, R. (2001). The future of rehabilitationLies in Retraining, Replacement, and Regrowth. British Medical Journal, 323, 1082-1083. Hopewell, C.A. (2001). The Neuropsychological Assessment of Personality and Emotional Changes after Traumatic Brain Injury. Sparks, NV: IMHNetwork, Limited. James, William. 1890. The Principles of Psychology. 2 vols. New York: Henry Holt and Co. Jonassen, D.H., Tessmer, M. and Hannum, W.H. (1999). Task Analysis: Methods forInstructional Design. Mahwah, NJ: Lawrence Erlbaum Associates Kern, R.S., Liberman, R.P., Kopelowicz, A., Mintz, J. and Green, M.F. (2002). Applications of Errorless Learning for Improving Work Performance in Persons With Schizophrenia. American Journal of Psychiatry, 159, 921-1926. Kessels, R.P., dee Haane H. (2003). Implicit Learning in Memory Rehabilitation: A Meta Analysis on Errorless Learning and Vanishing Cues Methods. Journal of Clinical and Experimental Neuropsychology, 25(6), 805814. Kunkel A, Kopp B, Müller G, Villringer K, Villringer A, Taub E, Flor H. (1999). Constraint-induced movement therapy for motor recovery in chronic stroke patients. Archives of Physical Medicine and Rehabilitation, 80:624-628. Leng, N.R.C., Copello, A.G., and Sayegh, A. (1991). Learning after brain injury by the method of vanishing cues: a case study. Behavioural Psychotherapy. Volume 19. p. 173-181. Martelli, M.F. (1999; 2000-2004). Villa Martelli Internet Disability Resources: A Comprehensive Listing of Some of the Most Useful Information and Links for Professionals and Persons Who Assess, Treat, or Cope with Physical and/or Neurologic Injury and/or Impairment [Comprehensive Website]. Richmond, VA: Author. World Wide Web: http://villaMartelli.com. Martelli, M.F. (2002). Neurobehavioral Rehabilitation: Empirical Evidence for Habit Retraining. Candlelight Presentation at the 21st Annual Symposium of the Brain Injury Association of America, Minneapolis. Martelli, M.F., Siegal, A.W. and Zasler, N.D. (2002). Grand Rounds: Frontal lobe syndromes following neurologic insult. Bulletin of the National Academy of Neuropsychology, 17, 1, 8-17. Martelli, M.F. (2003). Integrating Psychotherapy with Brain Injury Rehabilitation for Rebuilding the Shattered Self. Workshop presented at the annual meeting of the Coalition of Clinical Practitioners in Neuropsychology (CCPN), Dallas. Martelli, M.F., Zasler, N.D., Tiernan, P.J. (in preparation). Practical Approaches to Neurobehavioral Rehabilitation: A handbook of coping strategies. Masters, JC, Burish, TB., Hollon, SC, Rimm, DC. (1987). Behavior Therapy: Techniques and Empirical Findings. New York: Harcourt College Pub Masters, R.S., MacMahon, K.M., Pall, H.S. (2004). Implicit Motor Learning in Parkinson’s Disease. Rehabilitation Psychology, 49(1), 79-82. Miller, L. (1998). Shocks to the System: Psychotherapy of Traumatic Disability Syndromes. New York: Norton. Miller, L. (2000). Neurosensitization: A model for persistent disability in chronic pain, depression, and posttraumatic stress disorder following injury. Neurorehabilitation, 14, 25-32. Ormrod, J E (1999) Human learning (3rd edition), Sydney, New South Wales: Merrill, Prentice Hall Australia Pty Ltd. Prigatano, G.P. (1987). Psychiatric aspects of head injury: Problem areas and suggested guidelines for research. In H.S. Levin, J. Grafman, & H. M. Eisenberg (Eds.), Neurobehavioral Recovery from Head Injury (pp. 215231). New York: Oxford University Press. Prigatano, G. (1999). Principles of Neuropsychological Rehabilitation, Oxford: New York. Riley GA, Brennan AJ, Powell T. (2004). Threat appraisal and avoidance after traumatic brain injury: why and how often are activities avoided? Brain Injury, 18(9):871-88. Sbordone RJ (1990). Cognitive rehabilitation of the traumatic brain injured patient in the year 2000. Psychotherapy in Private Practice 8(2), 129-138. Schacter, D. (1996). Searching for Memory , Basicbooks: New York, New York. Schmitter-Edgecombe M, Beglinger L. (2001). Acquisition of skilled visual search performance following severe closed-head injury. Journal of the International Neuropsychological Society, 7(5), 615-30. Seligman M.E.P., Isaacowitz D.M. (2000). Learned helplessness. In G.Fink (ed), Encyclopedia of stress. San Diego: Academic Press Squires, E.J., Hunkin, N.M., and Parkin, A.J. (1997). Errorless learning of novel associations in amnesia. Neuropsychologia. Volume 35, Number 8. p. 1103-1111. Taub E. (1977). Movement in nonhuman primates deprived of somatosensory feedback. In: Exercise and Sports Science Reviews (Vol.4, pp.335-374). Santa Barbara, CA: Journal Publishing Affiliates. Taub E, Crago JE, Uswatte G. (1998). Constraint-induced movement therapy: A new approach to treatment in physical rehabilitation. Rehabilitation Psychology, 43:152-170. Taub E, Uswatte G, Morris DM. (2003). Improved motor recovery after stroke and massive cortical reorganization following Constraint-Induced Movement therapy. Phys Med Rehabil Clin N Am., 14(1 Suppl):S77-91, ix. Verfaellie M, Cermak LS, Blackford SP, Weiss S. (1990). Strategic and automatic priming of semantic memory in alcoholic Korsakoff patients. Brain Cognition, 13(2), 178-92. Wilson, F.C. And Manley, T. (2003). Sustained attention training and errorless learning facilitates self care functioning and chronic ipsilesional neglect following severe traumatic brain injury. Neuropsychological Rehabilitation, 13(5), 537-548. Wood, R.L. (2004). Understanding the ‘miserable minority’; a diathesisstress paradigm for post concussional syndrome. Brain Injury, 18, 11, 1135-1153.
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DISCHARGE PLANNING FOLLOWING TRAUMATIC BRAIN INJURY by Mark J. Ashley, Sc.D., CCC-SLP, CCM and Susan M. Ashley, M.S., CCC-SLP, CCM
Community-based treatment for acquired brain injury (ABI) first emerged in the early 1980s. Since that time, the impact of managed care has forced more and more care away from hospital-based treatment settings and into community-based treatment models. Since 1990, the overall length of stay for acute hospitalization and for hospital-based rehabilitation has decreased markedly for persons with traumatic brain injury (TBI) (Traumatic Brain Injury Facts and Figures, 1997; Kreutzer, Kolakowsky-Hayner, Ripley et al., 2001). Acute hospitalization length of stay decreased to an average of 16 days in 1996. Length of stay for acute rehabilitation hospitalization decreased from 47.74 days in 1990 to 29.49 days in 1996. Access to community-based treatment for acquired brain injury was quite limited in the early days. However, in recent years, acceptance of community-based treatment by a multitude of payer sources has improved. That being said, however, the vast majority of individuals who sustain acquired brain injury have limited or no access to community-based treatment. As a result on these substantially reduced lengths of stay in acute and rehabilitation settings, some people are returned to home care settings still in posttraumatic amnesia. Others, fortunate enough to be able to seek treatment in a community-based treatment setting, are admitted to those settings with greater medical acuity. There does not appear to exist a reliable data set by which one can compare lengths of stay for communitybased treatment settings. In general, lengths of stay have been reported to be diminished over the last 25 years (Ashley, Persel, and Krych, 1993). Contractual obligations vary by payer source. Casualty carriers, such as workers’ compensation and the liability carriers, are obligated to provide medical care and treatment necessary to restore an individual, as much as possible, to their previous level of functioning. This obligation can include lifetime medical costs. Health maintenance organizations (HMOs) have contractual limitations for rehabilitation services that can range from access to rehabilitation for a period of 30 to 90 days. Accident and health insurance carriers that operate as preferred provider organizations, for example, may provide access to community-based rehabilitation via benefit substitution programs whereby skilled nursing facility benefits are utilized to provide time-limited access to community-based treatment settings. Often, these limitations extend to 100 days; however, many carriers have been rewriting policies so as to preclude benefit substitution. Public payer sources such as Medicare and Medicaid are highly variable from state to state. Some states have Medicaid waiver programs that will provide for coverage in community-based treatment programs of a limited nature while 18
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other states have no such programs. Chan et al. (Chan, Doctor, Temkin et al., 2001) reviewed 1,271 cases of moderate to severe TBI and compared the frequency with which individuals were placed in skilled nursing facilities (SNFs) or rehabilitation facilities. Individuals with Medicaid coverage were much more likely to be discharged to a SNF than to a rehabilitation setting. These individuals were also more likely to have been injured by assault and to have a longer length of stay. People with fee-for-service insurance coverage tended to have shorter lengths of stay for acute hospitalization and were more likely to be transferred to rehabilitation settings. People with HMO coverage had a higher percentage of referral to SNFs though this difference did not reach statistical significance. Wrigley et al. (Wrigley, Yoels, Webb et al., 1994) reviewed the discharged disposition of 756 people with TBI and found a significant difference in disposition related to the presence or absence of a specialist in physical medicine and rehabilitation. Severity of injury, marital status, and age are also observed to impact the likelihood of referral to a rehabilitation setting. Against the backdrop of higher acuity admissions and substantial variation in payer source contractual liability, community-based treatment settings must prepare individuals being treated for discharge. It is often tempting to limit one’s view of discharge goal establishment to readying the individual to be able to participate in an environment that will immediately follow the community-based treatment setting. While the importance of such an approach is quite real, this article will deal with long-term discharge planning. That is to say, the focus of this article is to draw the treater’s attention to known issues facing persons with acquired brain injury and their caregivers years post-injury. An essential component to discharge management is found in a facility’s follow-up protocol. The breadth and depth of a group of professionals’ experience with TBI can be brought to bear in a properly designed follow-up program. The purpose of the follow-up program should be to identify problems for persons with TBI and their caregivers before the problems become complicated or develop into insurmountable obstacles that may require major changes in a person’s living arrangement. Such follow-up is ideally conducted not only in the days and weeks immediately following discharge but in the months and years that follow. Unfortunately, most community-based treatment facilities have no long-term solution in place to provide this resource. The follow-up contact must be applied to the individual’s family, social, academic, and/or vocational experiences post-discharge. To that end, discharge planning should include the education and preparation for individuals and their caregivers with
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reference to likely post-discharge complications. A Caregiver Manual can be prepared to address known areas of concern, long-term complications that may be encountered, and methods for either avoiding those complications or ways to address them when they occur (Ashley and Ashley, 2004). The literature provides a great deal of information regarding the cumulative nature of injury to the brain seen with repetitive trauma (Carlsson, Syardsudd, and Welin, 1987) and the susceptibility of persons to re-injury following a first or second traumatic brain injury (Annegers, Grabow, Kurland et al., 1980). As individuals attempt to return to desired social, vocational, and recreational pursuits, the risk of re-injury must be balanced with the need to engage in a productive and meaningful lifestyle. Discharge planning must include adequate education with individuals and their caregivers to ensure that consideration has been given to reducing the likelihood of re-injury while engaging in activities that provide for life satisfaction. Topics to consider include transportation, socialization, sexual activity, job safety, and risky recreational pursuits. These discussions should begin early in the rehabilitation process with all parties involved since they represent potentially major shifts in activities from which one may have previously derived life satisfaction. It may be helpful to facilitate development of a view that these changes in lifestyle are voluntary and the result of educated choices resulting in alteration of lifestyle rather than changes that are imposed by well-meaning health care providers, family members, or the injury itself. In some cases, the person with ABI may have difficulty in understanding and appreciating the changes in his/her abilities resulting from injury (Ben-Yishay and Diller, 1993; Giacino and Cicerone, 1998). Early identification of such discrepancies in the rehabilitative process may be especially helpful to these individuals. Discharge planning should include a review of activities and activity levels suitable to the individual. TBI frequently leaves an individual unable to work and socially isolated (Corrigan, Bogner, Mysiw et al., 2001; Miller, 1993; Tennant, MacDermott, and Neary, 1995). The demoralizing effect of loss of vocation and social isolation contributes, at least in part, to the development of depression. Funding for vocational rehabilitation is neither sufficient nor appropriate in most parts of the United States (Sim, 1999). Even workers’ compensation systems frequently are inadequate to undertake vocational rehabilitation following TBI. It is of great importance that the discharge environment be established to support and further the gains made in the rehabilitation setting. Additionally, the discharge setting should be such that development of additional skill sets is facilitated by the environment. All too often, however, caregivers may be pressed for time or patience and may choose to complete tasks for the individual that would be better completed by the individual but would require more time. Some caregivers conclude that an individual’s frustration is so great as to be emotionally painful for the person after observation of the difficulty encountered by the individual. Caregivers who complete basic activities for the individual may inadvertently strip the person of a sense of independence and individuality while unwittingly perpetuating an unnecessary level of dependence. An additional goal in follow-up contact is to identify circumstances such as those outlined above or to identify instances where the individual’s abilities have outgrown the environmental demand. A comprehensive resource analysis conducted prior to discharge allows for identification of available venues for meaningful engagement in the real world. Engaging in this pursuit with an injured person and/or caregivers can provide both with insight into the long-term nature of the problems before them and teach them to undertake resource analysis on an ongoing basis. The resource analysis should include options for volunteer activity, return to school, or return to work, as well as information about more immediate care and treatment needs, such as pharmacy location, current and future professional contact information, durable medical equipment suppliers, and support groups. This process must include a review of the proper timing of return to school or work in order to avoid premature return to either of these activities. A review of family and friends’ vocational and avocational interests should be included in the resource analysis. Family system adaptation following return of a person with TBI to the home can be quite complicated. Families report increased depression, a decreased ability to express feelings, decreased time and energy for social or recreational activity, and a tendency toward exercising increased control following severe TBI (Boyle and Haines, 2002). Family functioning across multiple domains is stressed following brain injury (Gan and Schuller, 2002). Emotional disturbances and disorders of executive function in a family member with TBI contribute distinctively to the family burden and ongoing education, counseling, and emotional support are recommended for families (Lezak, 1988). Lezak has identified six stages of families’ reactions once the
stress of a having an injured family member at home is experienced. First, the return of a person with TBI to the home is met with great pleasure, which is then replaced by bewilderment and anxiety as energy supplies diminish. Bewilderment is followed by guilt, depression, despair, and mourning as optimism diminishes and families undergo reorganization and, finally, emotional disengagement (Lezak, 1986). Position in the family appears to result in differential reaction to the stresses of TBI within the family (Orsillo, McCaffrey, and Fisher, 1993; Wiler, Allen, Durnan et al., 1990; Thompson, 1997; Rosenberg, 1993; Lyth-Frantz, 1998). Parents, for example, report increased global marital distress, reduced expression of affection, and a feeling of less spousal understanding. Mothers report greater dissatisfaction than fathers with regard to spousal support (Thompson, 1997; Lyth-Frantz, 1998). Mothers are more likely to be under a physician’s care, more likely to be using psychotropic medications, and more likely to express negative emotion than fathers (Thompson, 1997). Not surprisingly, many wives report a high degree of negative impact in their relationships due to changes following TBI (Rosenberg, 1998). The impact on the marital relationship reported by couples who are parents of a child with TBI contrasted to couples with children who are without disabling conditions demonstrates the impact of TBI to include decreased marital satisfaction, decreased satisfaction with parent-child relationships, enmeshment of the family more deeply into their situation, creation of a perception that the family’s fate was a function of circumstances beyond its control, and decreased interest and involvement in intellectual, cultural, and physically-oriented recreation (Lyth-Frantz, 1998). Siblings of individuals with TBI report family stress in integration of all changes and activities encountered following TBI (Wiler, Allen, Durnan et al., 1990). Coping strategies used by siblings include suppression of frustration, wishful thinking, avoidance, and self-blame (Orsillo, McCaffrey and Fisher, 1993; Wiler, Allen, Durnan et al., 1990). Overall, siblings show significant signs of emotional distress (Orsillo, McCaffrey, and Fisher, 1993). TBI clearly impacts the nature of family systems as well as the quality and nature of family interactions. Knowledge of common reactions within families can be used to counsel families as they prepare for life following TBI. Family resources consisting of time, attention, financial resources, and energy tend to become focused on an injured family member, often to the exclusion of all others’ needs. While this process begins innocently enough as a result of the injury itself, an exclusionary focus on the injured family member tends to continue over long periods of time. Families must be counseled, however, to attempt to avoid this trap on a long-term basis. Families are rarely ready to hear of the need to care for themselves, feeling as though such a response would be unwise, risky, selfish, or all of these. Families must be encouraged to both plan and actively return to normal patterns of family living. Families may need assistance in learning to discuss concerns and fears within the family unit. Parents need assistance in learning to facilitate open discussions amongst their children, extended family, and friends. A primary need asserted by families following TBI is for information (McPherson, McNaughton, and Pentland, 2000). Families desire information regarding the range of outcome possibilities for their family member. They also desire information regarding the various levels of care frequently encountered, including acute care, acute rehabilitation, subacute care, residential and outpatient postacute services, home and community treatment, and assisted-living services. They should be provided with all of the available treatment options as well as with explanation as to which of those are accessible based upon the financial constraints individual to their situation. All too often, families are provided with information about locally-available resources only and, while these resources may be most readily available, they may not be comprehensive enough to represent the range of options available. Families should be educated regarding the importance of establishing and utilizing a structured routine once the family member returns home. While some families naturally function well in structure, other families may need assistance in both learning structure and understanding the value of structure. The importance of a regular schedule for waking/sleeping, medications, meals, hydration, exercise, and completion of activities of daily living must be stressed for the individual with TBI. Unstructured approaches increase the risk of missed medications, meals, fluids, or rest. Caregivers must also be advised regarding the provision of feedback and consequences for inappropriate behaviors that may be encountered. Many families are at a loss as to whether feedback should be provided when a social behavior occurs. In some instances, feedback is overdone. Caregivers must be taught when to deliver consequences, which consequences to deliver, and how to deliver consequences. BRAIN INJURY PROFESSIONAL
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CAREGIVER CONCERNS The burden TBI places upon families and caregivers is tremendous and cannot be overstated. Few families, if any, are prepared to manage the vast array of difficulties posed by TBI. Additionally, families and caregivers can turn to only limited resources for assistance and, then, only in some communities. These problems range from accessibility of a home environment for individuals with physical challenges to dealing with the pervasive demands created by a person with medical, physical, cognitive, communicative, and/or behavioral problems. Depression, anxiety, anger, fatigue, mood disturbance, and family dissatisfaction are frequently encountered by the individual with TBI and caregivers alike (Perlesz, Kinsella, and Crowe, 2000). These complaints are not isolated to primary caregivers but extend to secondary and tertiary caregivers as well. Most often, the primary caregiver is a woman, usually a wife or mother. The mean age of caregivers is 44 years, suggesting a fairly long future of management of such responsibilities. Approximately 70% of caregivers live in the same residence as the injured person (Marsh, Kersel, Havill et al., 1998). Brooks et al. (Brooks, Campsie, Symington et al., 1986) reported frequently encountered problems as identified by relatives of individuals with TBI either remained stable or increased from one year post-injury to five years post-injury. The largest increase in frequency was in the area of disturbed behavior. Threats or gestures of violence increased from 15% at Year One to 54% at Year Five with actual assaults increasing from 10% at Year One to 20% at Year Five. Not surprisingly, measures of life satisfaction show a progression over time. Employment was predominantly associated with life satisfaction in the first year of injury while age, marital status, social integration, and depressed mood were not. At two years post-injury, employment, social integration, and depressed mood were associated with life satisfaction. In both instances, a strong relationship existed between perceived quality of life and employment. In fact, those individuals who were able to become gainfully employed or productive on a day-to-day basis reported greater life satisfaction (Corrigan, Bogner, Mysiw et al., 2001; Tennant, MacDermott, and Neary, 1995). In families where TBI involves a parent, unique challenges are presented for children. Parenting techniques change following brain injury and parents with TBI are reported by their spouses to be less nurturing and less involved with their children. They are less focused on goal setting, encouragement of skill development, and promotion of work values. Spouses report their counterparts to be less affectionate to and less accepting of the children. Finally, children report parents to be less demanding with reference to disciplinary issues (Uysal, Hibbard, Robillard et al., 1998). It is clear, then, that the bulk of responsibility for provision of treatment and caregiving falls to families. A number of approaches are suggested in the literature for family education and support. Holland and Shigaki (1998) provide a list of bibliographic resources consisting of educational materials for caregivers. DePompei and Williams (1995) recommend a family-centered counseling approach that is useful and Acorn (1993) provides a guide for community-based family education and support groups. Seizure hygiene The incidence of posttraumatic epilepsy (PTE) is estimated to be about 5% in cases with non-missile head injury (Jennett, 1975). PTE for individuals with moderate head injury occurs in 1.6% of all cases and, following severe head injury, PTE occurs in 11.6% of all cases (Annegers, Grabow, Groover et al., 1980). Some authors report the overall incidence for PTE to be as high as 25% and, for those individuals in coma for three or more weeks, to be as high as 35% (Guidice and Berchou, 1987). Unfortunately, the first occurrence of PTE can be many years post-injury (Bixler, Kales, Vela-Bueno et al., 1982; Dalmady-Israel and Zasler, 1993). Given the incidence of PTE, it is important that individuals with TBI and their families understand the relative risk associated with the development of seizures. Those individuals with known seizure conditions also need to understand those factors that are within their control that may impact the nature of a seizure disorder. In cases where a seizure condition does not exist, it is important for individuals with TBI and their caregivers to be aware of the various types of seizures and their manifestations. Likewise, those individuals who have an existing seizure disorder should also be aware of other manifestations of seizures. While grand mal seizures are easily recognizable, partial motor seizures and complex partial seizures are far less recognizable. Given that complex partial seizures constitute a high percentage of seizure prevalence following TBI, great care should be taken to ensure that all parties are able to recognize this condition (Jennett and Teasdale, 1981). Complex partial 20
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seizures are difficult to diagnose and are frequently misinterpreted by professionals and laypersons as psychiatric conditions. It is important to educate individuals with TBI and their caregivers regarding medication compliance and scheduling. A number of systems are available to assist individuals in maintaining compliance with chronic medication dosing. One of the most useful is bubble-pack packaging. While the systems are bulky and more expensive, enhanced levels of independence in medication compliance and improved accountability of medication compliance probably combine to reduce seizure frequency and the costs associated with therein. They will need to understand whether missed medications should be taken or not, whether medication should be abruptly stopped, and whether medications increase risk of pharmacological interaction with other drugs (Ramsay and Pryor, 2000). They should understand the half-life characteristics of anticonvulsants so as to enable them to recognize seizures which may occur at trough serum levels. Additionally, they must be educated to understand the importance of regular serum level testing as well as certain level testing immediately following breakthrough seizures. Information should be provided regarding the importance of monitoring drug levels during periods of diarrhea or constipation for the individual with a relatively fragile seizure disorder. Finally, education should be given advising how to monitor hydration status through observation of urine quality and frequency as well as the importance of maintaining electrolyte balances when engaging in extended air travel, outdoor activities, or during periods of illness. The nature of the diuretic effect of alcohol and caffeine should be discussed. Education should be provided regarding the importance of sleep, restedness, and stress. Depression Perhaps the most significant, long-term complication of TBI is depression (Perlesz, Kinsella, and Crowe, 2000; Ashley, Persel, and Krych, 1997; Rosenthal, Christensen, and Ross, 1998; Satz, Forney, Zauche et al., 1998). Depression is a major complaint by both injured individuals and their caregivers three to seven years post-injury (Dalmady-Israel and Zasler, 1993; Ashley, Persel, and Krych, 1997; Satz, Forney, Zauche et al., 1998; Burns, Kay, and Pieper, 1986). Biochemical and situational factors appear to contribute to the development of depression following TBI. It is important for individuals with TBI, their caregivers, and medical professionals involved with their care to be able to recognize the signs and symptoms of depression, agitated depression, panic attacks, and anxiety. The development of the SSRI class of drugs has been advantageous in the treatment of individuals with TBI who suffer from these conditions. It is also important for individuals with TBI to have ongoing access to health care providers experienced with TBI to allow for diagnostic differentiation of various behavioral episodes from agitated depression, panic attacks, anxiety, and seizures. The situational component of depression must be addressed by caregivers, in particular, ensuring that the individual with TBI is engaged in meaningful activities of daily living. This is a significant challenge, however, in that society does not provide for adequate supports for individuals with problems like those seen following TBI. Social isolation following TBI is prevalent for both individuals with TBI and their caregivers. Impaired interpersonal relationship skills are common and contribute to the difficulties in social interaction (Sale, West, Sherron et al., 1991; Rao and Lyketsos, 2002). Impaired judgment following TBI frequently causes caregivers to provide restricted choices for activities which ultimately result in reduced interaction with the real world. The aware caregiver should be encouraged to provide an increasing array of choice and control in daily decision-making. The caregiver needs to continually re-examine choice/control issues. Persons with impaired judgment are vulnerable to financial, legal, emotional, sexual, or social situations that are beyond their capabilities. Unfortunately, the need to protect stands in opposition, in many cases, to the pursuit of life satisfaction, participation in age-appropriate activities, and overall, meaningful involvement in daily living. Guardianships and conservatorships can assist in management of some risk; however, not all families can afford these legal devices. In some situations, the rights and powers afforded to a guardian or conservator are misunderstood by the guardian or conservator, medical professionals, or by the individual with TBI resulting in either misuse of these powers and rights or creation of liabilities for the guardian or conservator. Likewise, trusts can be established to protect the assets of an individual or to provide long-term care for an individual from family assets. While these matters will be discussed in further detail later, it is important to recognize the risk posed to freedom of
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choice, rights to self-determination, and life satisfaction by the well-meaning desires of caregivers to protect individuals with TBI and/or themselves. Sleep Sleep disorders are surprisingly prevalent in persons with TBI. Sleep disturbance manifests in three primary problems: 1) sleep apnea/hypopnea, 2) periodic living movement disorder (PLMD), and 3) hypersomnolence (excessive daytime sleepiness). Sleep apnea/hypopnea is evidenced in 11.3% of people with TBI, PLMD in 25.4%, and hypersomnia in 29.6% (Masel, Scheibel, Kimbark et al., 2001). In uninjured populations, sleep has been associated with cognitive functioning, behavioral functioning, and psychological health (Masel, Kimbark, and Kuna, 2001; Greenberg, Watson, and Deptula, 1987; Findley, Barth, Powers et al., 1986; Montplasir, Bedard, Richer et al., 1992). Motor vehicle collisions and unintentional injuries are also associated with sleep apnea (Young, Bluestein, Finn et al., 1997; TeranSantos, Jimenez-Gomez, and Cordero-Guevara, 1999; Horstmann, Hess, Bassetti et al., 2000). It is likely that sleep disorders contribute, in some fashion, to the predisposition of people with TBI to re-injury. Individuals with TBI and their caregivers should be aware of the potential contribution of sleep disorders to overall functional capabilities and the potential for increased risk of injury/re-injury. Crisis management Persons with TBI and their caregivers face an amazing array of challenges in day-to-day living. These challenges often reach crisis proportion leaving persons and their caregivers alone to face what can be financial, social, medical, and legal crises. A succinct medical history that can be conveyed to emergency personnel should be prepared and provided to individuals with TBI or their caregivers. Likewise, similar information should be provided, in advance, to health care providers who will continue to care for the individual upon his/her return home. Contact information for past treaters should be included. Education should be provided regarding treatment authorization requirements, advanced directives, and durable power of attorney for health care arrangements. Information should be provided to caregivers directing them to experienced legal resources within their community to assist in the development of advanced directives and durable powers of attorney for health care arrangements and competency proceedings. Home adaptations It is highly likely that most individuals’ homes will be made more suitable with some sort of modification to assist in management of day-to-day affairs. These may be major or minor modifications depending upon the nature of the assistance to be provided. Impairments of smell and taste are frequently overlooked, yet pose significant risk to the individual for safety. Smoke, natural gas, and CO2 detectors should be considered; however, since these devices are often batteryoperated, a plan must be put in place to assist those individuals who have memory impairments in timely battery replacement. A food storage and labeling procedure should be established since spoiled food cannot be detected with impaired smell, taste or, in some cases, vision or judgment. Additional lighting in bedroom, hallway, closet, and bathroom areas may be advisable for those individuals with visual and/or balance impairments. Low-light conditions increase the likelihood of a loss of balance and fall, thereby increasing the risk of re-injury (Jury and Flynn, 2001). The physically-challenged individual will require consideration of ease of access and egress from the living environment, as well as moving around the environment safely. Not only should ramping be considered, but time required to egress from various areas of the home should be considered as well. Handles and locks on some doors may need to be modified, if the individual has dexterity problems, for easy operation in the event of an emergency. Doorway widths, bathroom fixture access, hot water temperature controls, transfer bars or equipment, height and elevation angle of the bed, and placement, height, and sturdiness of furniture should all be considered. It may be advisable to install locks on the access door for the circuit breaker box so that large appliances can be electrically disabled, if needed. Ideally, controls for cooking services should be at the front of the stove. It may be advisable to suggest non-breakable dishes and for these dishes to be placed in lower cupboards for easier access, along with frequently used foodstuffs. For individuals with oral dysarthria, balance impairments, seizure disorders, or other serious health conditions, it may be advisable to obtain a med-
ical alert bracelet which will allow public safety officials a means of independent verification of a condition. Likewise, it may be advisable to inform local public safety officials of the special needs of an individual with TBI in their community in advance of any emergencies. Portable telephone equipment can be useful in the home; however, it should be accompanied by standard telephone equipment. The portable telephone should have an extended-life battery and allow continuously sounding page/find feature for those individuals with memory impairments. Placement of multiple phones around the living environment should be considered for the physically-challenged individual. Phones are available with very large buttons for easy dialing for the visually- or physically-challenged person and phones with indicator lights for incoming calls and volume adjustments can be useful for persons with hearing impairment. Lastly, an easily operated answering machine with adjustable “number of rings” capability is suggested. Emergency telephonic alert systems are commercially available, some of which require the user to wear a medallion for activation. Such systems can be useful for individuals with balance problems or for individuals whose seizure disorders include an aura. Bathrooms should have grab bars installed in the sink, shower/tub, and toilet areas. Hand-held shower wands, bath benches which are non-slip, and non-slip floor coverings in the bathroom and adjacent area should be considered. It may be advisable to remove the glass shower door fixtures, both for access and safety in the event of a loss of balance. Finally, ground-fault electrical outlets should be installed in the vicinity of all water faucets, such as in bathrooms, kitchens, and utility areas. Remote electrical control devices can be helpful in managing the environment; however, such devices can also pose a source of frustration as they are easily lost or misplaced. These include remotes for common equipment like televisions, radios, and stereos and can also be used to control lighting and other electrical appliances. Some individuals own weapons, heavy equipment, equipment used for their hobbies, etc., some or all of which may pose safety hazards for the individuals or those around them. The Internet provides access to services for individuals who have limitations in mobility or are challenged in access to community transportation. Shopping for many items can be safely conducted via the Internet and social contact can be enhanced. Of course, the same virtues pose risks to individuals with impaired judgment, in particular. E-mail contact with an established list of friends and/or professionals can be quite useful. Resources identified in advance, such as useful web sites or services, can also be quite helpful. Financial planning The financial consequences of TBI for both individuals and their families can be extreme. A long-term outcomes survey conducted with over 300 families averaging seven years post-injury found a mean reduction in monthly earnings for the individual reported at over $1000 per month in 1997 (Ashley, Persel, and Krych, 1997). On a family basis, mean monthly income reduction was reported to be over $400. Of interest in the study is the fact that all participants in the study had insurance coverage of one sort or another, with 49% of those individuals having workers’ compensation coverage. Since such coverage typically provides for some measure of income replacement, income loss experienced by many people without these coverages may be markedly higher. Similar difficulties are seen early on (e.g., one to six months post-discharge) with a high percentage of families recording a loss of work time and injury-caused financial problems (Bixler, Kales, Vela-Bueno et al., 1982). Consequently, families must be encouraged to immediately begin a review of their budgets and spending plans. Formal referral to budgetary counseling may only create additional burden to an already constrained budget. Council should be given to avoid larger purchases or to postpone these purchases, such as new automobiles and homes. Refinancing, debt consolidation, or restructuring of family debt may be necessary. Families may need to turn to other income sources, such as monies to be found in retirement funds, whole life insurance policies, and/or supplemental disability policies. They may need to consider the sale of certain assets to both generate income and reduce debt. Additionally, families may need to begin to adjust to lower income as a family. Since most families are overwhelmed by the changes in their day-to-day responsibilities, they will benefit not only from education in these arenas, but also from any contacts discharge planners can provide for free or nearly free service. The discharge planner should provide information or, preferably, appropriate application forms necessary for SSI, SSDI, and/or Financial Aid to Dependent Children. BRAIN INJURY PROFESSIONAL
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Families should be advised to conduct informal or formal estate planning. This can consist of a simple review of family assets and likely net worth or can involve formal trusts that might be necessary in reducing tax consequences in preserving maximal funding for an injured family member. It may be advisable to purchase life insurance policies, both individual and second-to-die policies as instruments to provide for funding for care. It can be helpful for families to discuss their intentions for the use of proceeds from their estate upon their death. Advance notice to siblings, for example, that parents desire for the proceeds of their estate to be used to the benefit of an injured family member will help to set expectations and perhaps avoid unnecessary conflict and legal expense. Additional rehabilitation timing In today’s medical cost-containment environment, rehabilitation of sufficient duration to maximize outcome potential is rare. Some individuals experience fairly rapid recovery in the early months following injury, while others experience more protracted recovery, sometimes over many months to years. From the available literature, it appears that access to rehabilitation services, treatment duration, treatment intensity, and the experience of the rehabilitation professionals involved appear to impact the degree of recovery to be experienced by the individual, notwithstanding the severity of injury, of course. A number of studies demonstrate significant functional improvements in reduction in disability levels following late application of rehabilitation services (Cope, 1995; Johnston and Lewis, 1991; Ashley and Persel, 1999; Fryer and Haffey, 1987; Eames, Cotterill, Kneale et al., 1995; Wood, McCrea, Wood et al., 1999; Gray and Burnham, 2000; Bell and Tallman, 1995). There is, however, relatively little information to guide professionals in determining which individuals with traumatic brain injury are likely to respond well to late rehabilitation. As characteristics of individuals’ living environments change over time, additional rehabilitation may be indicated. In instances, for example, where parents have been providing care, as the parents age, they may be unable to continue to provide care. At the same time, the individual with traumatic brain injury may have developed skills that could allow him/her, if further facilitated, to live independently or semi-independently. In some cases, decisions for divorce or separation necessitate a review of individuals’ living skills and furtherance of the skills may be possible with additional rehabilitation programming. It is highly likely that individuals with traumatic brain injury will be followed medically by practitioners with limited experience with this population. These professionals cannot be expected to necessarily make the best choices in treatment, be that pharmacological, surgical, or other. Iatrogenesis is not uncommon and should not be unexpected. It is important to understand that additional rehabilitation programming in a void of changes in the discharge environment that will support changes achieved in functional capabilities is ill-advised. Summary Given the tremendous changes that have occurred in health care delivery for people with traumatic brain injury over the last two decades, discharge planning must take on a longer term view than is traditionally undertaken. We can no longer be satisfied with a short term view of a person’s needs, relying upon further care to pick up where our treatment ends. Most individuals with TBI will not be afforded access to treatment and care consistent with their needs and, consequently, health care providers must attempt to provide education and information to these people and their likely caregivers to best prepare them for the life that awaits them.
ABOUT THE AUTHORS Susan M. Ashley, M.S., CCC-SLP, CCM, is the Vice President of Clinical Services for Centre for Neuro Skills which provides postacute brain injury rehabilitation and assisted living programs at facilities in Bakersfield, California, Encino, California, and Irving, Texas. Ms. Ashley received her Bachelors Degree in Speech Pathology from State University of New York at Geneseo and her Masters Degree in Speech Pathology from Southern Illinois University at Carbondale, Illinois. She is a licensed Speech Pathologist in California and Texas, a Certified Case Manager, and has specialized in brain injury rehabilitation since 1982. Mark J. Ashley, Sc.D., CCC-SLP, CCM, is the founder and President/CEO of Centre for Neuro Skills which provides postacute brain injury rehabilitation and assisted living programs at facilities in Bakersfield, California, Encino, California, and Irving, Texas. Dr. Ashley received his Bachelors Degree in Speech Pathology from State University of New York at Geneseo and his Masters Degree in Speech Pathology from Southern Illinois University at Carbondale, Illinois. Dr. Ashley was awarded a Doctorate of Science from Southern Illinois University at Carbondale. He serves as an Adjunct Professor in the Communication Sciences
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and Disorders department of the Rehabilitation Institute at Southern Illinois University and serves on the Board of the Brain Injury Association of America. He is a licensed Speech Pathologist in California and Texas, a Certified Case Manager, and has specialized in brain injury rehabilitation since 1978. Dr. Ashley has had two books published -- Working with Behavior Disorders: Strategies for Traumatic Brain Injury Rehabilitation and Traumatic Brain Injury Rehabilitation. The second edition of Traumatic Brain Injury Rehabilitation was published in early 2004. In addition to his books, Dr. Ashley has published in numerous research publications dealing with neurological rehabilitation, neuroembryological development, speech/language pathology, and rehabilitative outcomes.
REFERENCES Acorn S, An education/support program for families of survivors of head injury. Canadian Journal of Rehabilitation. 7(2): 149-151, 1993. Annegers JF, Grabow JD, Groover RV et al., Seizures after head trauma: A population study. Neurology. 30: 683, 1980. Annegers JF, Grabow JD, Kurland LT et al., The incidence, causes, and secular trends of head trauma in Olmstead County, Minnesota, 1935-1974. Neurology. 30(9): 912-919, 1980. Ashley MJ and Persel, CS, Traumatic brain injury recovery rates in post-acute rehabilitation of traumatic brain injury: Spontaneous recovery or treatment? Journal of Outcomes Measurement. 3(4): 15-21, 1999. Ashley MJ, Persel CS, and Krych DK, Long-term outcome follow-up of postacute traumatic brain injury rehabilitation: An assessment of functional and behavioral measures of daily living. Journal of Rehabilitation Outcomes Measurement. 1(4): 40-47, 1997. Ashley MJ and Ashley SM: Discharge planning in traumatic brain injury rehabilitation. In: Traumatic Brain Injury: Rehabilitative Treatment and Case Management, 2nd Edition. MJ Ashley (Ed.) CRC Press, Inc., Boca Raton, FL. Pages 727-755, 2004. Ashley MJ, Persel CS, and Krych DK, Changes in reimbursement climate: Relationship between outcome, cost, and payer type in the post-acute rehabilitation environment. Journal of Head Trauma Rehabilitation. 8(4): 30-47, 1993. Bell KR and Tallman CA, Community re-entry of long-term institutionalized brain-injured persons. Brain Injury. 9(3): 315-320, 1995. Ben-Yishay Y and Diller L, Cognitive remediation in traumatic brain injury: Update and issues. Archives of Physical Medicine and Rehabilitation. 74(2): 204-213, 1993. Bixler EO, Kales A, Vela-Bueno A et al., Nocturnal myoclonus and nocturnal myoclonic activity in a normal population. Res Commun Chem Patho Pharmacol. 36(1): 129-140, 1982. Boyle GJ and Haines S, Severe traumatic brain injury: Some effects on family caregivers. Psychological Reports. 90(2): 415-425, 2002. Brooks N, Campsie L, Symington C et al., The five year outcome of severe blunt head injury: A relative’s view. Journal of Neurology, Neurosurgery, and Psychiatry. 49: 764-770, 1986. Burns PG, Kay T, and Pieper B: A Survey of the Vocational Service System as It Relates to Head Injury Survivors and Their Vocational Needs. Grant No. 0001229. New York State Head Injury Association, 1986. Carlsson GS, Syardsudd K, and Welin L, Long-term effects of head injuries sustained during life in three male populations. Journal of Neurosurgery. 67(2): 197-205, 1987. Chan L, Doctor J, Temkin N et al., Discharge disposition from acute care after traumatic brain injury: The effect of insurance type. Archives of Physical Medicine and Rehabilitation. 82(9): 1151-1154, 2001. Cope DN, Brain injury: Analysis of outcome in a post-acute rehabilitation system. Part 1: General analysis. Brain Injury. 5(2): 111-125, 1995. Corrigan JD, Bogner JA, Mysiw WJ et al., Life satisfaction after traumatic brain injury. Journal of Head Trauma Rehabilitation. 16(6): 543-555, 2001. Dalmady-Israel C and Zasler ND, Posttraumatic seizures: A critical review. Brain Injury. 7(3): 263-273, 1993. DePompei R and Williams J, Working with families after TBI: A family-centered approach. Topics in Language Disorders. 15(1): 68-81, 1995. Eames P, Cotterill G, Kneale TA et al., Outcome of intensive rehabilitation after severe brain injury: A long-term follow-up study. Brain Injury. 10(9): 631-650, 1995. Findley L, Barth JT, Powers DC et al., Cognitive impairment in patients with obstructive sleep apnea and associated hypoemia. Chest. 90: 686-690, 1986. Fryer L and Haffey W, Cognitive rehabilitation and community readaptation: Outcomes from two program models. Journal of Head Trauma Rehabilitation. 2(3): 51-63, 1987. Gan C and Schuller R, Family system outcome following acquired brain injury: Clinical and research perspectives. Brain Injury. 16(4): 311-322, 2002. Giacino JT and Cicerone KD, Varieties of deficit unawareness after brain injury. Journal of Head Trauma Rehabilitation. 13(5): 1-15, 1998. Gray DS and Burnham RS, Preliminary outcome analysis of a long-term rehabilitation program for severe acquired brain injury. Archives of Physical Medicine and Rehabilitation. 81: 1447-1456, 2000. Greenberg GD, Watson RK, and Deptula D, Neuropsychologic dysfunction in sleep apnea. Sleep. 10: 254262, 1987. Guidice MA and Berchou RC, Post-traumatic epilepsy following head injury. Brain Injury. 1(1): 61-64, 1987. Holland D and Shigaki CL, Educating families and caretakers of traumatically brain injured patients in the new health care environment: A three phase model and bibliography. Brian Injury. 12(12): 993-1009, 1998. Horstmann S, Hess CW, Bassetti C et al., Sleepiness-related accidents in sleep apnea patients. Sleep., 23: 383389, 2000. Jennett B: Epilepsy after Non-Missile Head Injuries. Ed. 2. London: Heinemann, 1975. Jennett B and Teasdale G: Management of Head Injuries. Philadelphia: F. A. Davis, 1981. Johnston MV and Lewis FD, Outcomes of community re-entry programmes for brain injury survivors. Part 1: Independent living and productive activities. Brain Injury. 5(2): 141-154, 1991. Jury MA and Flynn MC, Auditory and vestibular sequelae to traumatic brain injury: A pilot study. New Zealand Medical Journal. 114(1134): 286-288, 2001. Kreutzer JS, Kolakowsky-Hayner SA, Ripley D et al., Charges and lengths of stay for acute and inpatient rehabilitation treatment of traumatic brain injury 1990-1996. Brain Injury. 15(9): 763-774, 2001. Lezak MD, Brain damage is a family affair. Journal of Clinical & Experimental Neuropsychology. 10(1): 111123, 1988. Lezak MD, Psychological implications of traumatic brain damage for the patient’s family. Rehabilitation Psychology. 31(4): 241-250, 1986. Lyth-Frantz L, Traumatic brain injury of a child: Effects on the marital relationship and parenting. Dissertation Abstracts International, A (Humanities and Social Sciences). 59(1-A), 1998. Marsh NV, Kersel DA, Havill JH et al., Caregiver burden at 1 year following severe traumatic brain injury. Brain Injury. 12(12): 1045-1059, 1998. Masel BE, Scheibel RS, Kimbark T et al., Excessive daytime sleepiness in adults with brain injuries. Archives of Physical Medicine and Rehabilitation. 82(11): 1526-1532, 2001. McPherson KM, McNaughton H, and Pentland B, Information needs of families when one member has a severe brain injury. International Journal of Rehabilitation Research. 23(4): 295-301, 2000. Miller L, Back to the future: Legal, vocational, and quality-of-life issues in the long-term adjustment of the braininjured patient. Journal of Cognitive Rehabilitation. 10(5): 14-20, 1993. Montplasir J, Bedard MA, Richer F et al., Neurobehavioral manifestations in obstructive sleep apnea syndrome before and after treatment with continuous positive airway pressure. Sleep. 15(suppl 6): S517-519, 1992. Orsillo SM, McCaffrey RJ, and Fisher JM, Siblings of head-injured individuals: A population at risk. Journal of
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Head Trauma Rehabilitation. 8(1): 102-115, 1993. Perlesz A, Kinsella G, and Crowe S, Psychological distress and family satisfaction following traumatic brain injury: Injured individuals and their primary, secondary, and tertiary carers. Journal of Head Trauma Rehabilitation. 15(3): 909-929, 2000. Ramsay RE and Pryor F, Epilepsy in the elderly. Neurology. 55(1): S9S14, 2000. Rao V and Lyketsos CG, Psychiatric aspects of traumatic brain injury. The Psychiatric Clinics of North America. 25(1): 43-69, 2002. Rosenberg LE, The effects of traumatic brain injury on spouses. Dissertation Abstracts International: Section B: the Sciences & Engineering. 59(1B), 1998. Rosenthal M, Christensen BK, and Ross TP, Depression following traumatic brain injury. Archives of Physical Medicine and Rehabilitation. 79(1): 90-103, 1998. Sale P, West M, Sherron P et al., Exploratory analysis of job separation from supported employment for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation. 6(3): 1-11, 1991. Satz P, Forney D, Zauche K et al., Depression, cognition, and functional correlates of recovery outcome after traumatic brain injury. Brain Injury. 12(7): 537-553, 1998. Sim J, Improving return-to-work strategies in the United States disability programs, analysis of program practices in Germany and Sweden. Social Security Bulletin. 59(3): 41-50, 1999. Tennant A, MacDermott N, and Neary D, The long-term outcome of head injury: Implications for service planning. Brain Injury. 9(6): 595605, 1995. Teran-Santos J, Jimenez-Gomez A, and Cordero-Guevara J, The association between sleep apnea and the risk of traffic accidents. New England Journal Of Medicine. 340: 847-851, 1999. Thompson A, Parental marital functioning following TBI in an adolescent/young/child. Dissertation Abstracts International: Section B: the Sciences & Engineering. 57(9-B), 1997. Traumatic Brain Injury Facts and Figures, The Traumatic Brain Injury Model Systems National Data Center, 2(1) April, 1997. Uysal S, Hibbard MR, Robillard D et al., The effect of parental traumatic brain injury on parenting and child behavior. Journal of Head Trauma Rehabilitation. 13(6): 57-71, 1998. Wiler B, Allen K, Durnan M et al., Problems and coping strategies of mothers, siblings, and young adult males with traumatic brain injury. Canadian Journal of Rehabilitation. 3(3): 167-173, 1990. Wood RLl, McCrea JD, Wood LM et al., Clinical and cost effectiveness of post-acute neurobehavioral rehabilitation. Brain Injury. 13(2): 69-88, 1999. Wrigley JM, Yoels WC, Webb CR et al., Social and physical factors in the referral of people with traumatic brain injuries to rehabilitation. Archives of Physical Medicine and Rehabilitation. 75(2): 149-155, 1994. Young T, Bluestein J, Finn L et al., Sleep-disordered breathing and motorvehicle accidents in a population-based sample of employed adults. Sleep. 20: 608-613, 1997.
AGNEW&BRUSAVICH – LAWYERS Specialists In Representing Individuals With Acquired Brain And Spinal Cord Injuries Let Us Help Rebuild Your Life with Our Successful Team Approach • • • • • • • • • • •
Highest Rating by Martindale-Hubbell - AV Preeminent Rating Trial Lawyer of the Year 1979, 1988, 1989, 1992 Past Presidents Consumer Attorneys of Los Angeles Vice President - Consumer Attorneys of California Members, American Board of Trial Advocates Named: “Top Fifty L.A. Lawyers Who Stand Out” (Los Angeles Business Journal) Named: “Top 100 Most Influential Lawyers in California” (Los Angeles Daily Journal) Named: “Among California’s Most Respected Plaintiff Trial Lawyer”(California Lawyer Magazine) Member: Trial Lawyer for Public Justice Member: International Academy of Trial Lawyers Lecturer & Speaker: “Communicating the Loss in a Traumatic Brain Injury Case”
Gerald E. Agnew, Jr.
–
Bruce M. Brusavich
AGNEW & BRUSAVICH - LAWYERS 20355 Hawthorne Blvd. – Torrance, CA 90503 Tel: (310) 793-1400 – Fax (310) 793-1499 http://www.agnew-brusavich.com BRAIN INJURY PROFESSIONAL
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A QUALITY SCORECARD FOR COMMUNITY BASED SERVICES
by Debra Braunling-McMorrow, Ph.D. and Randy Evans, Ph.D. In response to requests by consumers of community-based brain injury services, for the past 10 years providers of services for persons with brain injury have placed increasing emphasis on measures of “outcomes”. In particular, there has been a focus on after-hospital community based provider models. Ironically, this is an area where fewer standards of measure exist. Nonetheless, some definable measure of treatment gains is expected by purchasers of services as well as by professional peers and by consumers and their family members. While there have been important gains in the measurement of specific treatment approaches, the focus on clinical outcomes alone remains rather limited in representing the overall quality and value of services rendered. There remains a clear challenge to articulate the overall accountability, outcome and value in healthcare. In addition, with the increasing costs of providing health care services and unpredictable dollars to support an individual with brain injury, programs also need to be increasingly attentive to the “return on investment” principles demanded by the payers of services. Consequently, it is a challenge to not become preoccupied with financial indicators as a primary indicator of success for an organization and place less emphasis on the “softer” measures of quality and outcomes. In part, this is due to the relative ease in measuring performance in terms of revenues and costs. The challenge occurs for most providers in measuring and representing something as complex and often times elusive as “quality”. The purpose of this article is to encourage movement from a primary focus on outcome or treatment gains to one that more broadly represents quality and value to all the constituents of brain injury services. We are certainly not implying that measuring outcomes or treatment gains are not important, however they are only one of many indicators of quality and value. In addition, we will attempt to provide a framework from which a quality scorecard can be developed that, when placed side-by-side with economic indica24
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tors, provide providers, consumers, and payers with the necessary tools to guide their decisions. Trends in Healthcare Over the last 15 years, healthcare providers have been increasingly challenged as consumer knowledge of available treatment options has increased. As a result, demands for a “menu” of health services have increased. For example, public awareness of new treatment interventions has steadily increased through the media including the internet, television and radio ads, newspaper ads, etc. However payment for new and novel services has not necessarily corresponded with these increased choices. Consumers are also more empowered in making decisions about the direction of their healthcare. This is viewed as an overall positive trend in health care service delivery in part through wellness programs offered by employers and by such practices embraced by “evidence based medicine” (Weiner, 2004). An end result is that providers often find themselves in a position where the consumer is requesting more (professional service delivery, increased lengths of stay, or increased in-home/community support services) than what the limits of an agreement allowed by the person’s benefit plan. While some payers may elect to provide “out of contract” services, this practice is clearly more the exception than the rule. The cost of providing services has also climbed consistently in this same period. Providers and others have experienced this as insurance rates have accelerated more since 9/11 (Fuhrmans, 2004). Healthcare providers also have experienced additional expenses in attracting competent staff in the midst of shortages, such as the current national shortage of nurses.. For example, the U.S. Department of Health and Human Services (2002) projected supply and demand shortages for registered nurses with an estimated 800,000 open positions by 2020. This is in addition to reduced job satisfaction frequently reported by healthcare staff in performing their jobs and a national increase in medical error rates (Huff,
1997 and Weingart, Wilson, Gibberd & Harrison, 2000). In summary, a situation now exists where increases in the costs of providing health care services continues to rise but the “quality” of such services may not be occurring in step with these cost increases. Among providers of services to persons with brain injury, a great deal of variability exists in service delivery models. While there is a move toward evidence-based rehabilitation, much of what is currently provided is a mix of empirically validated treatment efforts along with homegrown tools and techniques. This creates an additional challenge in comparing one program or set of services to another. While all this exists, consumers including the person with brain injury, families, payers, and providers would agree that what they really want is more quality and value. The challenge as providers is to come to consensus with constituents on the indicators that best represent diverse and at times discrepant views. What is Quality and Who Determines It? Several special issues of professional peer reviewed journals have focused, from various vantage points, on the issue of “quality” of care for persons with brain injury (Ling and Evans, 1997; Evans and Malkmus, 1992). We contend that among the best conceptual model of judging the “value” of any health care intervention is embodied within the principles of “Evidence Based Medicine” (EBM). The basic premise of EBM is that health care decision making is heavily reliant upon scientific research that is relevant to the health care problem at hand. While this makes intuitive sense, the fact of the matter is that many health care decisions that are made by practitioners have only a tenuous relationship to the most up to date research (Knottnerus and Dinant, 1997). That is, many health care decisions are made consequent to the habits and routines of the practitioner. While many of these habits and routines may produce “good” results; they may not produce the “best” results.
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Frameworks to assess Quality and Value While we often think of quality and value as interchangeable terms, there may be unique features of each. In defining quality one often associates meeting some criteria of excellence whereas value implies worth, usefulness and some assessment of cost benefit. For example, providing contemporary empirically validated rehabilitation practices may be an important indicator of quality. Value, in the same circumstance, may be defined as the consumer achieving the best outcome within their resources or obtaining the right amount and type of service when needed in order to continue to live in his/her desired setting. Both typically imply some type of evaluation or comparison to a standard. In this case, the service provider may define the quality of his/her intervention based upon obtaining similar outcomes from previously treated patients with a similar condition. The patient (consumer) of the intervention may judge the quality of the intervention in comparison to “how I was” prior to the health care problem.
C USTOMER F OCUS
Q
Participant Satisfaction
Q
Payer Satisfaction
Q
Significant Other Satisfaction
Q
Participant Outcomes
Q
Prediction of Outcomes
Q
Participant Reasons for Discharge
M
Participant Critical Incidents
M
Health & Safety
Q
Dissatisfaction Needing Attention
M
Staff/Participants Interactions PEARL
M
Environmental Appearance
M
Q
Attained
Goal/Benchmark
December
November
October
September
August
July
June
Quality Scorecard
May
Proposed Quality Scorecard April
FIGURE 1
March
That said, what relationship does EBM have to the “quality” of services rendered? It could reasonably be argued that many quality decisions, within or external to health care, are decided by the “consumer” of the decision. Quality then involves concerns over cost, timing, durability, return on investment, satisfaction, convenience, and even something as elusive as piece of mind. How on earth can these various, objective and subjective variables be rolled up into a quality “indicator”. The simple answer: just ask the consumer if he/she is satisfied with the decision that they made following “consumption” of their decision. EBM embraces patient (i.e. customer) input not only into the health care decision but also into the outcome of that decision. We contend that it is virtually impossible to always get the various parties involved in critical, let alone day to day, health care decisions to always agree with one another. That said, we contend that if the provider, payer, and consumer of health care services consistently attempt to “align” themselves toward a mutually agreed upon outcome, that the likelihood of a “quality” embraced outcome is more likely (Jones and Evans, 1991). The Jones and Evans study, performed with 50 consumers and 50 payers of neuro-rehabilitation services demonstrated a rank order of desired outcomes from neuro-rehabilitation providers. The authors concluded, that in general, when early “alignment of expectations” were openly discussed and debated, that higher level of customer satisfaction significantly improved (vs. when less formal means of consumer input were utilized). This study also demonstrated that outcomes and resulting satisfaction levels were relatively easy to collect and measure, thereby making the process itself efficient, yielding an attractive return on investment. In summary, quality not only should involve a state of the art research basis, it should also involve taking into account the inclinatio--ns and desires of the consumer of services. We are not advocating that the consumer is in total control of their health care decisions, but we are advocating that the provider of such service take a serious consideration of the consumer’s input lest we run the risk of perhaps diminished, sabotaged, or, a nil outcome.
February
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Timing
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Q
E FFICIENCY M EASURES Direct Care Staff Efficiency
M
Direct Care Staff Turnover
M
Service Report Timeliness
M
F INANCIAL Days Sales Outstanding
M
Lengh of Stay
M
Census
M
S TAFF W ELL B EING Staff Satisfaction
A
Staff Tenure
A
Staff Injury
M
Staff Enhancement Opportunities
M
POSITIVE COMMUNITY INVOLVEMENT Community Presentations
M
Community Service Events
M
There are a number of “standards” for measuring performance excellence. In community based rehabilitation for persons with brain injury, providers often defer to standards set by The Commission on Accreditation of Rehabilitation Facilities (CARF). In working with public payers, specific standards may be set by funding agencies such as state Medicaid programs, or by in house research conducted by an insurance company. Often times the latter are intended to set standards of care by which to assess and compare to a network of providers. While setting a standard above the minimum, CARF and the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) are purposely non-prescriptive in outlining what constitutes value or quality. Instead, expectations are outlined in areas such as health and safety, input of persons receiving services, coordination of and outcome driven rehabilitation, and information management. There have also been efforts at the federal level to regulate quality of care standards, in particular, a national medical-error reporting system (Lovern, 2002). These efforts are mainly aimed at setting minimum standards limited to basic health and safety to allow comparison of healthcare providers. With rare exception, such as the National Quality Forum’s effort to identify a national healthcare quality agenda (Lovern, 2002), efforts to set standards continue to remain in the hands of the private sector and state regulators. Certainly that is the case with providers of community based services for persons with brain injury.
At the national level, quality indicators found in high performing industrial organizations have now been extended to healthcare such as Total Quality Management (TQM) (Deming, 1986) and the Malcolm Baldrige National Quality Award (2004). In 1999, Congress developed the Baldrige Criteria for Performance Excellence in Health Care modeled on demonstrated common practices in the world’s best companies in the manufacturing and service industries. The targeted practices fall into several categories including a focus on customers (the person receiving services, payers and other constituents) and staff wellbeing and satisfaction. In addition, service efficiency, and results both at the individual (e.g., satisfaction with services and health outcomes) and the organizational level (e.g., financial performance and service delivery results) are included. In response to a national focus on governance and ethics, measures of social responsibility and leadership accountability have been expanded in the Baldrige criteria. Common among all of the above standards is a multidimensional view of quality that blends a variety of indicators. This ensures that we do not base our assessment on a single measure such as outcome or satisfaction but rather a compilation of indicators that assess the breath of the organization and services provided. For example, an individual may meet his/her outcome goal, but may have been very dissatisfied with how the services were provided or their level of inclusion or input into goals. BRAIN INJURY PROFESSIONAL
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TABLE 1
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Quality Scorecard Definitions Definition
Time of Measure
Participant Satisfaction
Percentage of respondents indicating satisfaction overall with services
Discharge or quarterly
Payer Satisfaction
Percentage of respondents indicating satisfaction overall with services
Discharge or quarterly
Significant Other Satisfaction
Percentage of respondents indicating satisfaction overall with services.
Discharge or quarterly
Participant Outcome
Participant outcomes as measured by the Functional Area Outcome Menu FAOM
Discharge
Prediction of Outcomes Meeting promises to constituents
Total percentage of outcome areas (as measured by FAOM) each participant meets or exceeds from the predicted level of outcome at time of pre-admission projections.
Pre-admission
Reasons for Discharge or Planned Discharge
Percentage of planned discharges. Planned = successful met majority of outcomes, or team initiated discharge planning due to medical, cognitive or behavioral deterioration requiring alternative level of care, or withdrawal from program satisfied.
Discharge
Participant Critical Incidents
Frequency of significant events involving a participant.
At time of incident
Health & Safety
Percentage of respondents indicating overall he/she feels safe as measured through Participant Satisfaction Survey.
Discharge or quarterly
Dissatisfaction needing attention
Any customer complaint to be followed-up by appropriate staff.
At time of complaint
Staff Interaction with Participant
Random observation of staff interactions using the PEARL Scale.
At minimum one time per month
Environmental Appearance
Percentage of criteria met for environmental cleanliness, neatness and overall pleasant appearance
Random monthly checks
Average hours worked per direct care staff per participant in each residential setting.
Per day
Turn over rate for all full and part-time direct care staff.
Each month with annualized estimate
Timeliness of all clinical/service reports to constituents. Percentage of reports on time by program.
Monthly
Category of Measure Customer Focus:
Efficiency Measures: Direct Care Staff Efficiency Direct Care Staff Turnover Service Report timeliness Financial: Days Sales Outstanding DSO
Average number of days that the average daily revenue (over past 3 mos.) is outstanding. Monthly with running average up to that month
Length of Stay
Median and Average length of admission to discharge of participants by program.
Discharge
Census
Average daily census in each program reported as percentage of capacity.
Daily
Staff Satisfaction
Percentage of staff indicating satisfaction overall with job
Annual
Staff Tenure
Average tenure of all staff
Annual
Staff Injury
Number of accidents reported on Employee Accident Form
At time of accident
Staff Enhancement Opportunities
Number of opportunities for enhancement or acknowledgement of staff; Service Awards, Monthly Non-required training opportunities including in-house seminars, Certification for Brain Injury Specialists.
Staff Well Being:
Positive Community Involvement: Community Presentations
Number of presentations to a group at formal conference, formal in-service, CEU generat- Monthly ing activity, etc.
Community Service Events
Number of activities by the organization which enhances community relationships (donations, Monthly co-sponsored events, organizations membership in Chamber of Commerce, etc.)
There may be growing consensus related to the streams which constituents in brain injury rehabilitation use to define quality and value. These include: ● an outcome as a result of participating in services; prediction of outcome or getting what was promised, including estimated expense (time and money) to produce the outcome; ·health and safety; ● satisfaction of consumers (the person participating in the service; significant other or family; and payer), as well as satisfaction of staff or providers of services; and ● some measure(s) of efficiency of services (e.g., meeting goals ahead of schedule, efficient use of services, timeliness of reports). While all these indicators may be important, the data derived from them is likely to prompt different reactions from managers. Some may be considered “lead” indicators which can detect problems early and necessitate quick action while others may be considered “lagging” indicators permitting a somewhat retrospective analysis (Blazey, Ettinger, Grizzell, Janczak, 2003). For example, by the time financial results are available, typically the services have already been rendered, the customers are either satisfied or 26
BRAIN INJURY PROFESSIONAL
dissatisfied, and services have been provided in efficient or inefficient ways. Blazey et al. (2003) indicated that the second most lagging indicator is customer satisfaction, since the service has already been provided and the customer has already evaluated that service. Often, by the time one gathers the results, the customer has already completed their services. By contrast, lead indicators provide pulse-points on multiple areas, which can be followed by quick corrective action. For example, staff well being or respectful or positive ways in which they interact with the consumer can be a lead indicator to customer satisfaction. Similarly, measures of efficiencies such as report timeliness may be a leading indicator of financial performance and payer satisfaction. This is especially important if a payer’s reimbursement is dependent upon having a progress report prior to payment. It is important for a provider to balance the use of both leading and lagging indicators in order to provide immediate and long-term management of the organization. Another important factor to consider in evaluating quality is the capacity to compare or benchmark performance against a standard. In both Total Quality Management and the Baldrige National Quality Program this type of
comparison is required, accreditation agencies such as CARF have advocated for benchmarks. Historically, in post-acute rehabilitation, there has been a challenge in finding comparable tools or measures across programs. Over the past several years numerous outcome tools have been recommended as part of a minimum data set, yet providers of services have not broadly adopted them. In part, they have been insufficient in adequately measuring the diverse type of outcome and support persons with brain injury may need across their life span. Many providers have created their own tools to measure consumer outcome across a variety of areas of life (McMorrow, Braunling-McMorrow, & Smith, 1998). New tools such as the Mayo-Portland Adaptability Inventory - 4 (Lezak & Malec, 2003) has become more widespread, but have yet to be used by the majority of post-acute providers. Benchmarking against a common set of measures therefore poses a challenge. This becomes more of a challenge with proprietory providers who may be reluctant to share data beyond outcomes. Agencies are best advised to identify reasonable comparisons that may exist in comparable programs or outside the field of rehabilitation. For example, a program may compare participant rate of falls with a company similar in size and population demographics of consumers. In other areas such as customer satisfaction, comparisons with other health care providers or other consumer-oriented businesses may be reasonable. Benchmarking provides not only an indicator of how a program measures up to its own standards but also to standards of excellence set by recognized leaders. A Proposed Quality Scorecard A Scorecard can represent a useful way to identify measures, determine measurement procedures, reflect consumer consensus and provide comparison to a consensus standard. Components which reflect consumer consensus includes a focus on customers, efficiency, staff well being, and positive community involvement as well as financial indicators which reflect return on investment principles. Figure 1 represents a proposed quality scorecard template with possible indicators in several different areas. Table 1 provides a detailed definition of each scorecard element. The largest area, Customer Focus, includes participant, significant other, and payer satisfaction as well as a measure of outcome and how well the participant achieved the predicted outcome. In addition, reasons for discharge, health and safety, and participant critical incidents are included. Measures of dissatisfaction, and environmental appearance are examples of lead indicators of consumer satisfaction. Another example, random interactions between staff and the person served are rated to detect Positive, Early, All, Reinforcing, and Looking for opportunities to interact (PEARL) (McMorrow, 2003) and may be a lead indicator for consumer satisfaction and positive consumer outcomes. “Efficiency” may be measured by the ratio of direct care staff to consumers as well as staff turnover and service report timeliness. Days sales outstanding (DSO), lengths of stay, and census are all leading indicators of financial performance. Staff well being is assessed through mea-
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sures of staff satisfaction, turnover rates, and staff injury as well as the number of enhancement opportunities and staff recognition and awards. An agency’s contribution to their community may include a measure of community service events and community educational presentations. The scorecard represents comparison of month-over-month, quarter-over-quarter or even year-over-year results, depending upon the most useful unit of measurement. Each is then compared to a specified goal or benchmark with a (+) or (-) in the attained column. While measures such as dissatisfaction needing attention may be tallied monthly, response to consumer dissatisfaction should be addressed at the time of a complaint. The scorecard is intended to serve as a template for streams of indicators in which to measure quality and can be modified to meet individual program, consumer and payer needs. Utilization of Performance Feedback A quality scorecard provides a summary of key indicators of performance at a glance and allows the opportunity to provide internal and external constituents performance data beyond outcomes. A scorecard also helps ensures fact-based management, allowing managers to acknowledge their success and confront areas where quality does not meet the standard. Corrective action planning can then be created for those components not meeting expectations. The proposed scorecard provides a model in which to assess quality, which encourages providers of services to place in-balance quantitative measures of quality side-by-side with financial indicators to overall measure the health of an organization. Aside the financial indicators, the scorecard provides managers with consistent data to monitor & ensure prompt responding to consumer needs. Lastly, and perhaps most importantly, the scorecard should be user friendly and a valuable tool for all parties involved.
Tangram Behavioral Program San Marcos, Texas For over twenty years, the Tangram Behavioral Program has served individuals with acquired brain injury, mental illness, and behavioral disorders, offering: • Emergency placements • Behavioral stabilization • Residential rehabilitation
• Transitions to less restrictive environments, and • When necessary, long term supported living services
For Admission Information Please Call Toll Free
800.28.BRAIN
(800.282.7246) admissions@rescarepremier.com
www.rescarepremier.com
License# 108870 000738
ABOUT THE AUTHOR Dr. Debra Braunling-McMorrow is the Vice President of ABI Service Diversification for the Mentor Network. Dr. McMorrow has published in numerous journals and books and has presented extensively in the field of brain injury rehabilitation. She has served on several national committees and editorial boards and is the immediate past Chairperson for the American Academy for the Certification of Brain Injury Specialists and is an AACBIS Clinical Examiner. She serves on the Brain Injury Association of America Board of Directors and is the Vice-Chairperson for Program Outcomes. Dr. McMorrow is a Licensed Clinical Psychologist and an adjunct professor in the Rehabilitation Institute at Southern Illinois University at Carbondale. Dr. McMorrow is also a CARF surveyor. Dr Randy Evans is President of the Mentor ABI Group which provides community based services for persons with acquired brain injury. A clinical neuropsychologist by training, Dr. Evans is also Board Certified in Rehabilitation Psychology and he is also a Fellow of the National Academy of Neuropsychology. Dr Evans is well published and also is an Adjunct Associate Professor of Psychiatry at the University of North Carolina School of Medicine at Chapel Hill.
REFERENCES Baldrige National Quality Program: Health Care Criteria for Performance Excellence. Gaithersburg, MD, National Institute of Standards and Technology, Department of Commerce, 2004.
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Evaluation and Treatment Plan Implementation in Community Re-Entry Following Brain Injury: A Neuropsychological Approach by Bradley G. Sewick, Ph.D., ABPN, CCM Estimates from the Centers for Disease Control and Prevention (1999) suggest that each year, approximately 80,000 individuals are discharged from hospitals with traumatic brain injury (TBI)-associated deficits. Further, the National Institute of Health (1998) has determined that TBI is significantly underdiagnosed. This study tells us that the social consequences of mild, moderate, and severe TBI are multiple and serious including increased risks of suicide, divorce, chronic unemployment, and substance abuse. It is recognized that in many cases the consequences of TBI endure over the life span and that new and related problems are likely to occur as a result of challenges and the aging process. Some people with acquired brain injury (ABI) remain in nursing homes on ventilators and others may remain totally dependent in persistent vegetative states. Many persons require residential care, semi-independent living (SIL) programs and outpatient care. Community re-integration (CR) is the process wherein survivors of illness attempt to return to life outside of treatment institutions. Returning to home, work or recreational activities with or without supports are goals of community re-entry. Rehabilitation professionals may assist people with brain injuries with CR, and improve life quality, by employing methods of assessment and intervention to enhance this process. In this paper we review methods we have found useful in the CR process and discuss related issues, particularly as they relate to neuropsychological and behavioral factors. Persons returning to the community following traumatic brain injuries often experience impairments in areas of sensory-motor, cognitive, or emotional-behavioral symptoms that individually or in combination represent barriers to independence. Sensory and motor limitations are usually quite obvious and may be readily measured and quantified within the clinic with an understanding of what care needs and accommodations and adaptive equipment may be required. Many cognitive and emotional-behavioral problems can be identified in routine examinations from Neuropsychology, Speech and Language Pathology, and Occupational Therapy, yet serious impairments in these areas can be elusive and escape detection in routine neuropsychometric testing. Varney (1999), for example, has noted that individuals with TBI’s may perform normally on many neuropsychological measures and can appear relatively normal within the structure of patient interviews yet are often substantially impaired in independent behaviors and activities of daily living. He notes that there has thus been increasing recognition of the importance of obtaining information from collateral sources familiar with the patient including significant others (SO’s), parents, spouses, siblings, co-workers, etc. He notes that those with TBI may provide inaccurate histories and over-report or under-report symptoms. They may have a lack of insight concerning their behavior. At the same time, caregivers or SO’s may also over- or under-report symptoms and, as such, consideration should be given to these possibilities in assessment. Finally, it is noted that the limitations and insensitivities of traditional adaptability measures utilized in rehabilitation medicine such as the Functional Independence Measure (FIM) have been recognized, particularly within the post-acute state of rehabilitation (Hall, Mann, High et al., 1996). One may attempt to control for the above problems by utilizing assessment procedures that are standardized and ecologically valid for community re28
BRAIN INJURY PROFESSIONAL
entry in combination with measures of validity and reliability related to the source of information. THE COMMUNITY RE-ENTRY ASSESSMENT PROCESS Optimally, assessment procedures for people in community re-entry or those who are already in the community but struggling with significant reintegration issues consist of an interdisciplinary team responsive to the person’s needs. The evaluation process may in theory begin and end with only one professional discipline such as a psychologist or vocational rehabilitation counselor but may be expanded or contracted based upon information that is generated. Routine discipline-specific evaluations are frequently completed. It is suggested that the examinations include input from caregivers and/or SO’s. When possible, examination procedures may be conducted in vivo, i.e., in the patient’s home or environment of interest. Finally, consideration should be given to utilizing procedures that include broad-based standardized measures of independent living capacities that are sensitive to underlying behavioral disturbances such as executive dysfunction, abulia, and disinhibition with checks for validity. Results of evaluations may be utilized to formulate treatment plans including formal therapies, community-based interventions and care to be provided by the professionals, paraprofessional staff, family and others. The plan should include information regarding the living structure, requirements for modifications and adaptive equipment, and the number of hours required from specific providers. Re-examinations can be performed as necessary dependent upon observed changes. Follow-up contacts may be scheduled after discharge. In the sections below, we review several standardized assessment procedures that we have found useful relating to community re-entry. THE COMMUNITY INTEGRATION QUESTIONNAIRE (CIQ) The Community Integration Questionnaire (Willer, Rosenthal, Kreutzer et al., 1993) is a brief 15-item procedure addressing a person’s functional capacities in the following areas: home integration, social integration, integration into productive activities and information regarding school/training program situation and volunteer activities. Within each subscale of the CIQ, each item contributes equally to the score. The coefficient alpha of the overall CIQ was .76. The cited study included analysis of 59 adults with brain injury living in the community. The CIQ was completed by each person and a family member. Correlation coefficients between the two sources of assessment were .81 for home integration, .74 for social integration, .76 for productive activities, and .89 for total CIQ. All correlations were significant at p < .01. The study also involved a comparison of individuals with brain injuries compared to a nondisabled sample. Results indicated that persons with brain injury were significantly less integrated on multiple CIQ measures relative to individuals in the nondisabled sample. It should be noted, however, that while the CIQ is a useful technique to quickly evaluate a patient’s overall level of community integration, it lacks detail in demonstrating specific areas of deficit and is of more limited use for functional assessment or treatment planning. It is thus perhaps best used as an outcome measure. It does not assess integration skills or deficit of skills.
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THE VINELAND ADAPTIVE BEHAVIOR SCALES (VABS) The VABS (Sparrow, Balla and Cicchetti, 1984) is a semi-structured interview technique that was originally developed for developmentally disabled children and adults but clearly has application for assessing the problems and difficulties with functional capacities that persons with ABI experience. Norms are provided for samples ages 0 through 18 years 11 months. The procedures have early adult level ceiling effects in the sense that normal individuals older than the oldest sample group perform similarly given the nature of items that essentially establish basic competencies in several areas. We recommend the expanded form, which includes 577 items and requires 60 to 90 minutes to complete. Functional capacities are reviewed in areas including receptive and expressive communication, functional reading, writing and corresponding abilities, activities of daily living, home maintenance, safety precautions, and abilities to function within the community and utilize transportation, etc. Functional capacities are also assessed in areas of socialization, recreation, behavioral controls, coping abilities and gross and fine motor capacities. All 577 items are rated on a three-point scale. There is a special section on maladaptive behaviors reviewing 36 additional items addressing symptoms such as impulsivity, inappropriate sexual behavior, and bizarre speech. A system is included within the procedures for generating a treatment plan to address identified problem areas. Split half reliability coefficients for the various VABS scales were primarily in the high .90’s. Test-retest reliability studies for the scales were consistently high as well. The validity of the VABS has been supported through studies of its correlation with other adaptive behavior scales and scales of abilities. AAMR ADAPTIVE BEHAVIOR SCALES-RESIDENTIAL AND COMMUNITY: SECOND EDITION (ABS-RC:2) The ABS-RC:2 (Nihira, Leland and Lambert, 1993) is a set of procedures that are completed by a caregiver, a professional familiar with the person or in an interview with the caregiver. Testing time is only 15-30 minutes. This is the latest version and the items have gone through numerous modifications since the 1969 edition. Multiple scores are generated for domains including: independent functioning; physical development; economic activity; language development; numbers and time; domestic activity; prevocational-vocational activity; self direction; responsibility; socialization; conformity; trustworthiness; stereotyped and hyperactive behavior; sexual behavior; selfabusive behavior; and, disturbing interpersonal behavior. General factor scores are produced in areas of: personal self-sufficiency; community self-sufficiency; personal social responsibility; social adjustment; and, personal adjustment. Multiple studies have investigated reliability and validity. Internal consistency reliabilities and stabilities for all scores exceed .80. The procedure has been standardized on more than 4000 persons from 43 states with developmental disabilities residing in institutional communities or in residential settings ranging in age between 18 and 80 years. The ABS-RC:2 is a relatively brief, standardized and well conceptualized procedure that surveys diverse areas of adaptive functioning that are important to consider in evaluation and treatment planning for community reentry with persons with ABI. A weakness is that the scales have not been standardized with individuals with ABI or a normal population and some components of the procedures are more appropriate for populations with developmental disabilities. INDEPENDENT LIVING SCALES (ILS) The ILS (Loeb, 1996) are a psychometrically based examination conducted between an examiner and the person receiving services. Scales are generated in areas of memory/orientation, money management, managing home and transportation, health and safety, and social adjustment. A total of 68 items are presented. A number of environmentally relevant materials are utilized in the examination including actual currency, checkbook materials, an envelop, map, and telephone. The person is asked to perform a number of activities directly related to functional capacities required for normal living. Each item is scored along a three-point continuum. Norms are provided for adults ages 65 and older and for a clinical group ages 17 years and older with diagnoses including dementia, psychiatric illness, mental retardation and TBI. The test requires approximately one hour to administer and score. Limitations inherent in this procedure include a lack of detail in several areas of functioning that may be of use in treatment planning, and the scales do not readily capture problems that patients may be experiencing in daily life with initiation, follow-through, and higher level organizational functions. Given the item-byitem nature of the testing and the interaction between the examiner and the person, such deficits in behavior can indeed escape detection. The scales have a strength of demonstrating ecologically valid behaviors that a person may or may not be capable of performing under structured conditions but lack the
ability to predict whether the person may or may not be capable of reliably performing such related behaviors independently in the community. Persons with significant problems with inertia and initiation may appear relatively intact on these scales. REITAN AND WOLFSON’S CONATION INDEX Reitan and Wolfson (2000) have noted difficulties that may be encountered when predicting performance capabilities in everyday life on the basis of routine cognitive test performance and suggest that we revisit a neglected dimension in neuropsychological assessment—conation. The authors describe conation as the ability to focus and maintain persistent effort in order to achieve maximal production in performance of a task. Conation is associated with the ability to work with continued efficiency and speed and to achieve as much effective production as possible. Tests with a low sensitivity to conation include measures that are administered on an item-by-item basis from the examiner to the person and require relatively brief answers. Tests with a higher sensitivity to conation may include pencil and paper versions of the same relative procedures but in a format wherein the person has to independently read and respond to each item and progress though many items until completion. In the initial study, subjects with brain damage, compared to controls, showed progressive impairment in accordance with the degree to which tasks were judged to require conative ability. In a subsequent study (Reitan and Wolfson, 2004) found that intelligence test requiring greater conative ability tend to produce lower scores for brain-damaged persons, as compared to controls, than do intelligence tests that are less demanding of conation. Most recently, Reitan and Wolfson (unpublished manuscript) have developed the Conation Index which is derived by generating a ratio between scores on tests that are sensitive to impaired conation and those that are relatively insensitive to impaired conation. The above studies suggest that conative ability is a signifanct dimension of normal versus abnormal brain functions. These methods show promise in improving the ecological validity of standardized neuropsychological test procedures. It appears that conation has a negative effect on the functional application of cognition in brain injury. THE IOWA COLLATERAL HEAD INJURY INTERVIEW (ICHII) The ICHII (Varney, 1999) is a structured interview that assesses psychosocial symptoms frequently reported after TBI that are closely related to brain injuries, particularly those involving dysfunction of the orbital frontal regions. The interview consists of 21 items with associated questions that address areas of functioning such as disorganization, poor judgment, apparent low motivation, and disinhibition. A collateral interview is conducted with an informant such as a caregiver or SO. Two points are given for each item if a substantial change has occurred with respect to the behavior in comparing pre-injury vs. post-injury functioning. A score of one point is given if change has occurred but is only a modest problem. No points are given if no change has occurred or the change poses no problem to the informant and/or the person’s life. Data reviewed indicate that in a study of 100 nonclinical control subjects, the average score was only one point. Scores of 10 or more are rated as clearly abnormal. It should be noted that this procedure was developed for sensitivity to specific orbital frontal presentations and includes an attempt to measure the reliability of the results for this syndrome. As such, most items relate to dimensions of inertia or lack of drive and initiation. Four items, however, are included that are not commonly seen in focal orbital frontal syndromes. As such, very high scores may be viewed with some suspicion as a presentation of specific classical orbital frontal syndrome. Presentations associated with the same four items, however, may be seen in persons with other or multi-focal brain lesions. In a study of 40 normal individuals who were experiencing unusual stressors in the home, the mean score was still only slightly above one point and the worst score obtained was a raw score of 6. The maximum score possible is 42. In contrast, when 100 mild head injury patients with partial or total anosmia were studied, the majority of collaterals endorsed more than half of the items, resulting in scores of greater than 25, and only four obtained scores that were clearly within normal limits of 6 or less. It is noted that these patients were for the most part normal-appearing on both standard neuropsychological tests and structured interviews yet frequently demonstrated poor judgment, indecisiveness, etc., to the extent that they were unemployable or disabled. The ICHII has a benefit in that the author has attempted to include an assessment of reliability. The procedure has the advantage of being quantified and standardized and studied with both normal and abnormal organic conditions. The procedure addresses abnormalities in cognitive and behavioral functioning that may escape routine neuropsychometric BRAIN INJURY PROFESSIONAL
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assessment. Scores are not rated in the abnormal direction unless symptoms cause problems for the person or those in the environment. The technique does not by itself identify specific life areas where problems are identified but such information can be documented through inquiry during the procedure. In that scores are generated on the basis of changes in behavior rather than the mere presence of symptoms, findings in the positive range are indicative of acquired rather than developmental symptoms. The ICHII has been modified twice since its original development in 1989. THE FRONTAL SYSTEMS BEHAVIOR SCALE (FrSBe) The FrSBe (Grace and Malloy, 2001) is another behavioral rating system that was developed in part with an understanding that some persons with brain injuries are capable of normal performance on traditional neuropsychological measures yet may demonstrate severe impairments in daily living within their natural settings as a result of their injuries. One set of scales are completed by the person (self-rating) and another set of scales are completed by a family member or caregiver (family rating). Administration time is only approximately 10 minutes. Scales are generated for three constellations of symptoms that are oftentimes seen in individuals with brain injuries including apathy (14 items), disinhibition (15 items), and executive dysfunction (17 items). Each item is rated on a 5-point scale. Ratings are made pre- and post-injury/illness for each item. The FrSBe has been standardized on a normative sample of 436 men and women ages 18 to 95 years including those with less than or more than a high school education. Data are also provided for several clinical samples including head injury, frontotemporal dementia, frontal lesions, stroke, Alzheimer’s disease and Parkinson’s disease. Several validity and reliability studies have been conducted with the procedures. Reliability studies have demonstrated internal consistency of .96 and split half reliability of .93. Validity studies have demonstrated sensitivity of the scales in differentiating changes in the behavior of persons before and after frontal brain injuries and in differentiating between those with frontal versus non-frontal brain lesions. The scales are particularly useful in comparing ratings of behavior between persons and caregivers or family and are thus useful in objectively documenting mechanisms related to anosognosia. The FrSBe is a more broad approach than the ICHII to behavioral syndromes that may be observed in individuals following brain injuries, particularly those with frontal system dysfunction. MAYO-PORTLAND ADAPTABILITY INVENTORY-4 (MPAI-4) The MPAI-4 (Lezak and Malec, 2003) has undergone extensive research and multiple revisions resulting in its current form. The MPAI-4 is a 35-item instrument that can be completed by a professional, a team of professionals, a person with a brain injury, or SO’s. The test has four major components. Part A addresses specific abilities such as mobility, use of hands, vision, speech, nonverbal communication, and problem solving. Each item is rated on a fivepoint scale ranging from no noted problem to severe problems that interfere with activities more than 75% of the time. Part B assesses components of adjustment including symptoms of anxiety, depression, anger, pain, fatigue, social interaction, and self-awareness. Part C addresses components of participation including initiation, socialization, leisure and recreation, self-care, home care, transportation, employment, and money management. Part D addresses associated conditions including alcohol and substance abuse, psychotic symptoms, law violations, and other conditions causing physical or cognitive impairment. The scale addresses the most frequent types of problems that persons with ABI encounter within physical, cognitive, emotionalbehavioral, and social spheres as they attempt to re-integrate. Reference data are presented for two groups of persons with ABI’s ranging in age from 14 to 77 years. The sample includes males and females and Caucasian, Asian, African-American, Hispanic, and Native American individuals. Brain injury types include TBI’s, cerebrovascular accidents, resected tumors, infectious diseases, anoxia, toxic exposure, and multiple sclerosis. Injury severity ratings ranged from mild to severe injuries, although most injuries were within the moderate to severe category. Item reliability studies were very high and ranged between .98 and .99 for the three scales and the total scale. Concurrent and predictive validity studies have demonstrated significant correlations between the scales and other disability rating scales and neuropsychological measures. Raw scores for the various scales can be converted to T scores for the different rater groups. T scores between 40 and 60 are considered average or typical for a person involved in outpatient, community-based, or residential rehabilitation following brain injury. T scores between 40 and 50 are considered in the mild to moderately impaired range of overall severity compared to other people with ABI. T scores between 50 and 60 are considered in the moderate to severe range. T scores of 60 suggest severe limitations. T scores between 30 and 40 suggest mild limitations compared to other paersons with moderate to 30
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severe brain injuries. The MPAI-4 is not as detailed as the VABS in its ability to identify very focal areas of impairment that may adversely affect daily functioning, but it has the advantages of development and standardization on persons with ABI’s. The scales do not include internal measures of response reliability, but such assessment may be achieved concurrently with the use of additional methods. It is noted that in the above procedures and in reviews of other related adaptation scales, there has been relatively scarce efforts to develop associated measures to assess the reliability of information provided by collaterals or SO’s. Virtually all symptom validity tests that are utilized in neuropsychological assessment are administered to the individual with brain injury such as the Test of Memory Malingering (Tombaugh, 1996) and the Validity Indicator Profile (Frederick, 1997). These and other procedures are useful in measuring the individual’s effort and other dimensions of behavior that may affect the validity and reliability of neuropsychological test results but such procedures are not well suited to assess the reliability of information obtained from collaterals and they have not been studied in relation to measures of adaptation in the community. When performing assessments associated with community reintegration, it would be optimal if clinicians had the option of objectively assessing the reliability of information provided by collaterals as well as reliability measurements of behaviors generated by persons with brain injury that have been studied in relation to measures of adaptation. The author of the present paper and colleagues (Smith, Karell, Staszkow and Nettleman) have been developing two such procedures: the Collateral Validity Scale (CVS); and, the Functional Sorting Test (FST). We have been collecting data on the CVS and FST in association with adaptation data obtained from SO’s and persons with ABI in community-based settings (e.g., home and vocational environments). The CVS is a brief series of statements related to symptoms such as anxiety, depression and pain but also included are a number of statements that are less common and unusual and hence form the basis of the validity component of the procedure. SO’s rate each item on a 5-point Likert Scale. Preliminary data suggests that the CVS differentiates between SO’s who are rating ABI patients with significant adaptation deficits versus SO’s who are exaggerating the adaptation problems of individuals. The FST consists of 1,000 plastic chips of five different colors that are mixed in a clear plastic bin. Subjects are asked to sort the chips into trays as quickly as possible for 15 minutes, after which time the number of chips correctly sorted is counted as well as the number of sorting errors and strategies used. Subjects can use both hands and any method they choose to sort the materials most efficiently. Each tray holds up to 100 chips of a particular color. Two trays are provided for each color. Preliminary data indicate that, barring significant upper extremity limitations, most persons with ABI can sort at least twice as many chips in 15 minutes as normal subjects putting forth poor effort intentionally. Data in community-based settings has indicated a relationship between performance on this measure and performance on concurrent measures of adaptation, particularly within the higher ranges. TREATMENT PLANNING, TEAM MEETINGS AND STAFF COMPOSITION The administrative and clinical staff composition of programs providing community-based rehabilitation services are necessarily different than those seen in traditional rehabilitation facilities. Venzie, Felicetti and Cerra-Tyl (1996) discuss several challenges to such organizations including community fears of persons placed in the community and the roles of professional and paraprofessional staff members. The organization of staff meetings is more difficult. Since care providers are often working with persons in the community, sometimes in distant locations, they must travel to a common location to meet with other team members. Multiple related logistical challenges are encountered. Kneipp (1995) recommends that organizations providing nonresidential community-reintegration programs should consider having team meetings at the home of the person served, indicating that the process fosters empowerment and enhances the ecological validity of the treatment plan. The use of portable phones improves communication among team members working in different community locations. The treatment plan should be based upon evaluations completed by the professional team. Treatment should focus on real world problems identified in the assessment process and in ongoing experience with the person gleaned by professional and paraprofessional staff and others. When possible, rehabilitation interventions should be implemented and practiced in the specific environments wherein problems occur. Paraprofessionals are utilized to a great extent in community-based rehabilitation under the supervision of professional staff. Becker, Harrell and Keller (1993) report that a survey of nationwide rehabilitation programs revealed that over three fourths of the programs uti-
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lized paraprofessional staff in the treatment of individuals, with subacute programs reporting the most use of paraprofessionals. Indeed, paraprofessionals often play a major role in community-based rehabilitation. If people require multiple hours of care per day and treatment in the community, it is more cost-effective to have interventions provided by paraprofessionals when possible. Paraprofessionals have been given various titles between different organizations. They have been referred to as Therapy Assistants, Behavioral Technicians and other titles. More recently we observe a trend toward the use of the title Life Skill Trainer (LST). Our informal survey of rehabilitation providers in 2002 revealed a great amount of variability in the job descriptions, experience, training, and education of such staff in different organizations. My impression is that paraprofessional staff utilized in LST-type positions typically individuals who have broad or specific life skill knowledge who could work effectively with a professional health care team and are able to provide interventions in more complex clinical situations. They are typically described in terms of having good people skills and usually a high school education with at least some college-level training and additional training in health care delivery regarding ABI. In some situations, however, an LST-type staff member may have less than a high school education but may have specific or broad experience and knowledge directly relevant to the rehabilitation needs of an individual. For example, a mechanic with a 10th grade education and good interactional and teaching skills may be invaluable to a person attempting to re-integrate into a previous area of functioning within that field. LST level staff are distinguished from attendant care level staff based upon their experience, training, their interaction with the professional team and the types of interventions that they provide. Attendant care level interventions are typically custodial in nature. BRAIN INJURY SPECIALIST CERTIFICATION AVAILABLE FOR PARAPROFESSIONAL STAFF In 1996, the American Academy for the Certification of Brain Injury Specialists (AACBIS) was established to certify knowledge and experience in the field of ABI rehabilitation. Certification is available for workers at the level of direct care staff. The Level 1 basic certification is based upon passing a national written examination, a positive recommendation from the AACBIS internal reviewer, satisfactory completion of a performance-based assessment, and a minimum of one year full-time work experience or a minimum of 24 months of part-time work experience along with training. This certification is not a substitute for in-depth didactic training in brain-behavior relationships and intensive individually supervised professional-level internship or residency training with neurological populations, but represents a marked advance in opportunities for paraprofessional staff and professional staff with limited experience or training in the field. The result of these developments will translate into improved knowledge among care providers and better care and outcomes. The Third Edition of the Training Manual for the Certification of Brain Injury Specialists from the AACBIS (2004) has recently been published. The training manual is 190 pages in length and represents an excellent resource guide for training in ABI rehabilitation. Eight chapters provide information including an overview of brain injury, philosophies of rehabilitation, functional neuroanatomy, medical and medication issues, treatment approaches, issues related to children, adolescents and families, as well as legal and ethical issues. FAMILY MEMBERS AS CAREGIVERS Family members often bear the responsibility for supervision and care of persons surviving ABI. This can be a most difficult situation. Wade, Taylor and Drotar (2002) studied families of persons with brain injury 4.1 years post injury and found significant long-standing injury-related caregiver stress and burden. Romano (1989) discusses multiple dilemmas faced by the families of brain injured individuals including surrogacy, goal setting, and limits of obligations. Albert, Im, Brenner et al. (2002) have demonstrated that social work liaison-type interventions periodically with families may offer substantial benefit to the rehabilitation process. Carnevale (1996) studied 17 families with an individual with brain injury who received natural-setting behavior management program training. The program proceeded over a period of three years. The program is a mobile team approach that is designed to teach persons with TBI and their caregivers how to implement and sustain homebased behavior management programs. Results indicated an 82% improvement in target behaviors over the course of the training, but it is noted that only 11 families completed the training. In most situations, care for individuals with ABI is provided by professional staff and paraprofessionals in conjunction with some level of involvement from family members. Family members usually provide attendant care
or custodial level interventions but in some instances may be trained to employ higher level interventions including behavioral modification plans. The responsibility of direct care from family members can, over time, cause multiple problems including divorce and even estrangement from biological relatives. Some people have limited resources to fund care needs, and family members face additional burdens by sacrificing competitive employment opportunities in order to meet care responsibilities. In many situations, of course, persons would prefer to receive care directly from family members. In some situations, this may work out well with training and supports, especially if the responsibilities are minimal and if there are financial supports for family taking on this new role. Several potential conflicts, however, may be inherent in such arrangements. Conflicts may arise including questions associated with for whom the family-caregiver is actually working and to whom they are responsible for clinical and employment-related considerations. In many situations, it is optimal to have care and supervision provided by an external organization with professional supervision so that family members may interact with the person in a manner most consistent with historical relationships. We have seen good long-term outcomes in some situations with family providing the majority of direct care. IMPLEMENTATION OF TREATMENT Treatment services provided to persons with ABI in the community are dependent upon assessment results, recommendations and resources available to implement the desired plan. Economic factors can weigh heavily in this process. Therapists oftentimes need to look to financial resources available for the individual including insurances that cover services, other funds that may exist for care, and resources that are available through governmentally funded supports and services as well as involvement from family, friends, and volunteers. Most states have protection and advocacy services and resources available through Community Mental Health and institutions such as the Family Independence Agency. Various low-cost or subsidized services are also frequently available for activities including the Department of Parks and Recreation, libraries, museums, community houses, community-sponsored events, and support services such as those available through local chapters of the Brain Injury Association. Federal, state, and local funding for services for individuals with ABI can vary widely and frequently on an unpredictable and even month-to-month basis. Unfortunately, the availability of resources may determine whether or not a given person may be able to proceed from a residential facility to a more independent level of functioning. Brzuzy and Corrigan (1996) studied a sample of individuals with ABI in Ohio randomly drawn from 1,265 residents of the state. They concluded that living independently after moderate to severe TBI may be achieved by a complex interaction of prior skills, available resources, current capabilities, and the expectations of both the family and the individual. They indicated that the minimal role that severity of injury appeared to play in that process was consistent with the World Health Organization model and suggests that the determinants of independent living may be subject to systematic intervention. QUALITY OF LIFE PERCEPTION AND TREATMENT GOALS Definitions of life quality and meaning can be highly individualized and must be assessed on that basis. There are certain factors, however, that are common perceptions among persons with ABI. Corrigan, Bogner and Mysiw (2001) studied 218 persons following traumatic brain injury. Results indicated that gainful employment, social integration and the absence of depressed mood were associated with life satisfaction ratings two years after injury. Oâ&#x20AC;&#x2122;Neill, Hibbard, Brown et al. (1998) studied 337 persons with TBI between the ages of 18 and 65. The findings reveal that employment showed a strong and consistent relationship with perceived quality of life among this sample as well as social integration within the community and home and leisure activities. They note that part-time employment may have been superior to full-time employment for individuals with TBI in that part-time workers had fewer unmet needs and were more socially integrated and more engaged in home activities than full-time workers. In a study of 240 individuals with TBI, Gordon, Sliwinski, Echo et al. (1998) found that exercise among TBI patients improves mood and aspects of health. PSYCHOTHERAPY AND BEHAVIOR MODIFICATION Emotional, behavioral, and personality disturbances are a frequent consequence of TBI. Psychotherapy can play a major productive role in the postacute rehabilitation process (Prigatano, 1991; Prigatano and Klonoff, 1988). Yody, Schaub, Conway et al. (2000) present a community-based model of behavior interventions for individuals with ABI that utilize analytic behavioral approaches to decrease frequency, intensity, and duration of unwanted behavior. Reinforcement, environmental restructuring, and skills training are demonstrated to produce desired behaviors. A focus is noted on specialized BRAIN INJURY PROFESSIONAL
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training of all staff. The technique reinforces behaviors inconsistent with unwanted behaviors. Charts and techniques are presented for plotting antecedents, behaviors, consequences (e.g., the ABC’s of behavior modification), and results/outcomes. The program presented involved the individual with brain injury, the family, and the funding source throughout the treatment process. Pace and Colbert (1996) present a detailed example of a homebased interdisciplinary treatment intervention driven by behavior analysis for a person with behavioral disturbance following ABI. Results indicated improvement in all targeted outcomes. Conclusions were that services provided in the home appeared to result in greater levels of motivation from the person when focusing on real activities as opposed to simulations in a hospital or treatment center. Sewick and Nettleman (1988) present a model of operant conditioning utilizing paraprofessional staff that may be applied to behaviors in diverse community settings. In a book by Karol (2003), an eclectic approach is presented with respect to the practical treatment of severe behavioral dyscontrol following ABI. A major focus of the approach is to provide an accommodative environment that will enable persons to approach underlying needs and experience decreased frustration and symptoms. A chapter by Sevenich includes a discussion of medication interventions associated with the neuropsychological approach. A chapter by McDaniels provides specific behavior modification plans for 18 problem behaviors frequently observed in persons with ABI. The chapter includes a discussion of different forms of disinhibition and methods for managing suicidal behavior, delusional symptoms, anosognosia, social withdrawal and other problems. VOCATIONAL REHABILITATION Nettleman and Sewick (1988) describe a model of vocational rehabilitation for persons with ABI wherein cognitive rehabilitation interventions related to specific job skills are provided in real world work settings that are progressively more complex. Vandiver, Johnson and Christofero-Snider (2003) present a brain injury assessment model for use as a vocational assessment tool for those with ABI. The approach emphasizes the need for a multidisciplinary provider team including medical examinations, vocational assessment, neuropsychological testing, team meetings, situational assessment, job search, job placement, and follow-along activities. Interventions are utilized that focus on relevant tasks supporting the development of generalizable, transferable, and functional skills. Training examples are provided. The technique is designed to help people discover the personal assets related to employment and functions as a support system for family members.
py and cognitive rehabilitation therapy with persons in outpatient acute rehabilitation and transitional living facilities. The book provides multiple assessment and treatment tools such as charts, checklists, outlines, individual and family handouts, etc., that can be readily adapted across settings for immediate use. Sections are presented on case management and treatment planning, cognitive rehabilitation, emotions and behavior. Materials include contracts such as no suicide/impulsive behavior contracts and contracts for patients with noncompliant behavior. Suggestions are made with specific approaches to many problems including strategies to manage repeated “emergency calls” from persons in crisis. Again, Internet-related activities may be readily integrated with the materials presented. DeBoskey, Hecht and Calub (1991) provide an extensive workbook of materials for families caring for persons with ABI. The materials are of great practical value. Chapters are presented addressing funding sources, cognitive problems and how to manage them, behavioral problems and how to manage them, and emotional problems that may be experienced by family members. Concrete and specific examples with management techniques are reviewed. For example, in a section on lack of initiative, family members are instructed to assist the person in making a daily schedule each evening with subsequent methods for the person to check off activities as he/she completes them and with instructions for family to call periodically during the day to cue behavior, etc. HI-TECH HELP Hart, Buchhofer and Vaccaro (2004) performed a survey of 80 persons with moderate to severe TBI 3.5 years following injury. Two thirds of the sample regularly used computers. With respect to the use of portable computer devices for memory and organizational tasks, respondents expressed preferences for simplicity of use, technical support and longlasting battery power. Desired functions were indicated for keeping track of money spent, remembering things to do and remembering what others have said. At the present time, the data indicate that portable computer devices are not yet being utilized as widely as desktop models. The use of computer technology and the Internet within the person’s living situation enhances opportunities for communication, socialization, recreation, organization and deficit compensation. The use of portable computer technology and portable phones in the community provide similar advantages out of the home.
SOCIAL AND RECREATIONAL REINTEGRATION Condeluci and Gretz-Lasky (1987) apply the concept of social role valorization (SRV) to persons with ABI pursuing CR. The SRV model is defined as the process of bringing value to the social role that disabled individuals have in the community by providing age-appropriate activities and training methods in real community settings and concurrently working to change societal perceptions and attitudes about the abilities of individuals with ABI. Condeluci (1996) discusses the manner in which disabled populations are perceived and devalued because of their differences and thus fall prey to exclusion from society. Methods for inclusion and association within the community are discussed.
PROGRAM CERTIFICATION The Rehabilitation Accreditation Commission (CARF, 2004) offers a voluntary process wherein organizations providing brain injury home and community-based rehabilitation programs may apply for accreditation. Accredited programs have submitted materials regarding the administrative and clinical operations of their program that have been approved and have successfully completed a site visit by surveyors. Specific requirements for home and community-based rehabilitation programs include, for example, descriptions of all service providers and an educational program as well as policies and procedures regarding the personal security for providers while delivering services and how transfers are handled to other levels of care, etc.
COMPREHENSIVE RESOURCE WORKBOOKS FOR COMMUNITY RE-ENTRY We have identified three workbooks that we have found particularly useful in community re-entry work. Angle and Buxton (1991) have developed an extensive manual that represents a collection of graded activities that are readily transferable to home or community settings. Multiple modules are presented for skill-building exercises that progress from simple to more difficult activities. A functional integrative approach is followed for attaining living skills. Cognitive remediation exercises emphasize real life settings that allow for effective compensatory strategies to be designed and implemented. Multiple evaluation and screening forms are presented. Skillbuilding exercises are provided in areas of home management, money management, interpersonal skills, leisure, transportation, and prevocational and vocational skills. There is a family education module. Techniques are presented for stress management, coping strategies, and the development of support systems. Vocational materials include the development of telephone skills and interview skills and forms to accomplish work trial contracts. It is noted that the materials in this workbook may be readily incorporated into work that therapists and trainers may conduct with persons in association with computer technology and the Internet. O’Hara and Harrell (1991) provide a large collection of materials involving an empowerment approach to the rehabilitation process. The authors developed the materials over several years of work in psychothera-
OVERALL GUIDING PRINCIPLES Work in the rehabilitation field is guided by principles to promote health, safety, well-being, and maximization of function. We have outlined many tools and techniques that may be of benefit in the rehabilitation process with this population. Unless those techniques are applied by kind, sensitive, and conscientious individuals, the process will often be incomplete. Rehabilitation involves dynamic interactions between the person, the treatment team and family and the general environment. An individual’s sense of self is often shattered following ABI. An effective team provides a supportive environment wherein the person may be able to redefine themselves. From the individual’s perspective, this may indeed represent the most important component of rehabilitation. We have found concepts from existential psychiatry particularly useful in this respect such as the work of Viktor Frankl (1962) and methods of logotherapy. Basic tenets of logotherapy involve a focus on the future and techniques aimed at defining and finding meaning in one’s life. Therapeutic activities supporting this process can significantly improve life quality and adjustment to compromises that have occurred because of illness. The rehabilitation process proceeds through different stages. Following active steps of treatment, some individuals are capable of recovering and compensating for their problems to the extent that they may be discharged from care completely. Many people, however, require long-term interven-
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tions (oftentimes at the LST and attendant care level) to maintain therapeutic activity patterns and control ongoing symptoms. Such long-term maintenance plans are frequently required for those persons with marked behavioral, cognitive and/or physical limitations. In a sense, the team and others became orthotic-like mechanisms to assist persons in maximizing levels of continued adaptive functioning. In optimal plans, ongoing therapeutic plans are designed around activities that become intrinsically rewarding and that are inconsistent with unwanted behaviors. CONCLUDING REMARKS In summary, our review of contemporary and traditional literature provide support for the notion that assessment procedures for persons with ABI in community re-entry should optimally include consideration of ecologically valid standardized objective measures of adaptive capacities. Treatment planning should include information derived from assessment procedures including input from the person, guardian and family. Rehabilitation activities geared to improve functioning in areas of employment, social activities, leisure and recreation activities, emotional stability, and exercise appear to be of particular benefit in improving life quality. Psychotherapy and a supportive environment wherein the person may take steps toward redefining their sense of self and meaning following injury appears to represent an important component of the rehabilitation process for many people.
ABOUT THE AUTHOR
conferences
Bradley G. Sewick, Ph.D., ABPN, CCM, is a board certified Clinical Neuropsychologist and Certified Case Manager. He is Chief of Clinical Services at Spectrum Rehabilitation Centers in Southfield, Michigan, and is on the teaching or clinical staff of several institutions and University Hospitals. He is widely published in the field of brain injury and has worked on inpatient units, residential treatment programs, semi-independent living programs, and outpatient and day treatment programs for more than 20 years. Send correspondence to Dr. Sewick at 26555 Evergreen Rd., Southfield, MI 48076, e-mail address: bgsewick@aol.com or by phone at 248-350-3650.
REFERENCES Albert SM, Im A, Brenner L et al. J Head Trauma Rehabil 2002, 17 (2), 175-189. American Academy for the Certification of Brain Injury Specialists. Training Manual for Certified Brain Injury Specialists, Mclean, VA 22102, or www.biausa.org. Angle DK and Buxton JM. Community Living Skills Workbook for the Head Injured Adult, Pro-Ed, 1991, Austin, TX. Becker G, Harrell WT and Keller L. A survey of professional and paraprofessional training needs for traumatic brain injury rehabilitation. J Head Trauma Rehabil 1993, 8 (1), 88-101. Brzuzy S and Corrigan JD. Predictors of living independently after moderate to severe traumatic brain injury: a comparison study. J Head Trauma Rehabil 1996, 11 (3), 74-83. CARF Standards Manual…The Rehabilitation Accreditation Commission 2004, Tucson, AZ. Carnevale GJ. Natural-setting behavior management for individuals with traumatic brain injury: results of a three-year caregiver training program. J Head Trauma Rehabil 1996, 11 (1), 27-38. Centers for Disease Control and Prevention. Epidemiology of traumatic brain injury in the United States [on-line], Available: http://www.cdc.gov/ncipc/dacrrdp/tbi.htm, 1999. Condeluci A. Beyond Differences. DC Press, 1996, Sanford, FL. Condeluci A and Gretz-Lasky S. Social role valorization: A model for community reentry. J Head Trauma Rehabil 1987, 2 (1), 49-56. Corrigan JD, Bogner JA, Mysiw WJ et al. Life satisfaction after traumatic brain injury. J Head Trauma Rehabil 2001, 16 (6), 543-555. DeBoskey DS, Hecht JS and Calub CJ. Educating Families of the Head Injured: A Guide to Medical, Cognitive and Social Issues. Aspen Publishers, 1991, Gaithersburg, MD. Frankl VE. Man’s Search for Meaning: An Introduction to Logotherapy. Beacon Press, 1962, Boston. Frederick RI. Validity Indicator Profile Manual. NCS Assessments, 1997, Minnetonka, MN. Gordon W, Sliwinski M, Echo J et al. The benefits of exercise in individuals with traumatic brain injury: a retrospective study. J Head Trauma Rehabil 1998, 13 (4), 58-67. Grace J and Malloy P. Frontal Systems Behavior Scale (FrSBe). PAR Psychological Assessment Resources, Inc., 2001, Lutz, FL Hall KM, Mann N, High WM et al. Functional measures after traumatic brain injury: ceiling effects of FIM, FIM + FAM, DRS, and CIQ. J Head Trauma Rehabil 1996, 11 (5), 27-39. Hart T, Buchhofer BS and Vaccaro, MS. Portable electronic devices as memory and organizational aids after traumatic brain injury: a consumer survey study. J Head Trauma Rehabil, 2004, 19 (5), 351-365. Karol RL. Neuropsychosocial Intervention: The Practical Treatment of Severe Behavioral Dyscontrol After Acquired Brain Injury. CRC Press, 2003, Boca Raton, FL. Kneipp S. A model for team meetings in nonresidential community-integrated programs. J Head Trauma Rehabil 1995, 10 (6), 50-59. Lezak ME and Malec JF. Manual for the Mayo-Portland Adaptability Inventory-4 (MPAI-4), 2003, James F. Malec, Ph.D., PM&R-1-D-St. Mary’s, Mayo Clinic Rochester, MN 55905, or (www.tbims.org/combi/mpai). Loeb PA. Independent Living Scales. PsychCorp, 1996, San Antonio, TX 78259-3701. Nettleman RH and Sewick BG. Cognitive treatment in the workplace: a
MARCH 31- April 3rd – Fourth Annual Galveston Brain Injury Conference, Opening the Black Box: Characterizing Brain Injury Treatment for Research & Practice, Galveston, Texas. Contact: geastmond@tlc-galveston.org, web: www2.utmb.edu/TLC/MoodyPrize/conference.htm. APRIL 2nd – Neuroimaging: Current Developments; Implications for Assessment and Treatment; Neurobehavioral Correlates presented by the New York Academy of Traumatic Brain Injury, New York, NY. Contact: (212) 9477111 ext. 328, e-mail: rolland.parker@med.nyu.edu, web: www.nyacadtbi.org. 14-16 – First International Conference on Vocational Outcomes in Traumatic Brain Injury, Vancouver, BC. Contact: (604) 875-1775e-mail: sljproductions@telus.net, web: www.tbicvancouver2005.com. MAY 5-8 – International Brain Injury Association's 6th World Congress on Brain Injury, Melbourne, Australia. Contact: +61 3 9682 0244, e-mail: braininjury@icms.com.au, web: www.icms.com.au/braininjury. 11-13 – Ontario Brain Injury Association Certificate Training Program: Neuropsychological Assessments: Beyond Testing, St. Catharines, Ontario. Contact: Ontario Brain Injury Association (800) 263-5404, e-mail: obia@obia.on.ca, web: www.obia.on.ca. 12-13 – Brain Injury Conference presented by Contemporary Forums. Seattle, Washington. Contact: (925) 828-7100, ext. 102, e-mail: info@cforums.com, web: www.contemporaryforums.com.
multi-stage process. Proceedings of the 7th Annual National Symposium of the National Head Injury Foundation, 1988, Atlanta, GA. NIH Consensus Statement. Rehabilitation of persons with traumatic brain injury. National Institutes of Health, Office of the Director, Vol. 16, No. 1, October 26-28, 1998. Nihira K, Lelard H and Lambert N. AAMR Adaptive Behavior Scales-Residential and Community: Second Edition, Pro-Ed, 1993, Austin, TX. O’Hara CC and Harrell M. Rehabilitation with Brain Injury Survivors: An Empowerment Approach. Aspen Publishers, 1991, Gaithersburg, MD. O’Neill J, Hibbard MR, Brown M et al. The effect of employment on quality of life and community integration after traumatic brain injury. J Head Trauma Rehabil 1998, 13 (4), 68-79. Pace GM and Colbert B. Role of behavior analysis in home and community-based neurological rehabilitation. J Head Trauma Rehabil 1986, 11 (1), 18-26. Prigatano GP. Individuality, lesion location and psychotherapy after brain injury. In: A.-L. Christensen and B. Uzzell (Eds.), Brain Injury and Neuropsychological Rehabilitation: International Perspective, Lawrence Erlbaum, 1994, Hillsdale, NJ, 173-179. Prigatano GP and Klonoff PS. Psychotherapy and neuropsychological assessment after brain injury. J Head Trauma Rehabil, 1998, 3, 45-56. Reitan RM and Wolfson D. Conation: A neglected aspect of neuropsychological functioning. Archives of Clinical Neuropsychology, 2000, 15, 443453. Reitan RM and Wolfson D. The differential effect of conation on intelligence test scores among brain-damaged and control subjects. Archives of Clinical Neuropsychology, 2004, 19, 29-35. Reitan RM and Wolfson D. Unpublished manuscript. Computation of the conation index. Romano MD. Ethical issues in families of brain injured persons. J Head Trauma Rehabil 1989, 4 (1), 33-41. Sewick BG and Nettleman RH. Behavior modification paradigms in community-based brain injury rehabilitation. Proceedings of the 7th Annual National Symposium of the National Head Injury Foundation, 1988, 309310, Atlanta, GA. Sparrow SS, Balla DA and Cicchetti DV. Interview Edition Expanded Form Manual (Vineland Adaptive Behavior Scales). American Guidance Service 1984, Circle Pines, MN 55014-1796. Tombaugh TN. The Test of Memory Malingering (TOMM). Multihealth Systems, 1996, Toronto, Canada. Vandiver VL, Johnson J and Christofero-Snider C. Supporting employment for adults with acquired brain injury: a conceptual model. J Head Trauma Rehabil 2003, 18 (5), 457-463. Varney NE: Post-traumatic anosmia and orbital frontal injury. In: Varney NR and Roberts RJ (Eds.) The Evaluation and Treatment of Mild Traumatic Brain Injury, Lawrence Erlbaum Associates, 1999. Venzie DR, Felicetti T and Cerra-Tyl D. Planning considerations for community integrative brain injury programs. J Head Trauma Rehabil 1996, 11 (6), 51-64. Wade S, Taylor H, Drotar D et al. A prospective study of long-term caregiver and family adaptation following brain injury in children. J Head Trauma Rehabil 2002, 17 (2), 96-111. Willer B, Rosenthal M, Kreutzer JS et al. Assessment of community integration following rehabilitation for traumatic brain injury. J Head Trauma Rehabil 1993, 8 (2), 75-87. Yody BB, Schaub C, Conway J et al. Applied behavior management and acquired brain injury: approaches and assessment. J Head Trauma Rehabil 2000, 15 (4), 1041-1060.
JUNE 8-11 – Annual Conference & Exposition of the American Physical Therapy Association, Boston, Massachusetts. Contact: (800) 999-2782, web: www.apta.org. 14-17 – Canadian Association of Rehabilitation Professionals National Conference, Charlottetown, Prince Edward. Contact: (902) 368-6123, e-mail: kdmullins@gov.pe.ca, web: carpnational.com. 21-25 – Case Management Society of America's 15th Annual Conference & Expo, Orlando, Florida. Contact: (501) 225-2229, e-mail: cmsa@cmsa.org, web: www.cmsa.org SEPTEMBER 29-October 2 – American Congress of Rehabilitation Medicine, Achieving, Evidence-Based Rehabilitation, Chicago, Illinois. Contact: (317) 915-2250, e-mail: acrm@acrm.org, web: www.acrm.org. 22-24 – 18th Annual Brain Injury Medical-Legal Conference presented by the North American Brain Injury Society, Amelia Island, Florida. Contact: (800) 3217037, e-mail: contact@nabis.org, web: www.nabis.org. 22-24 - NABIS Presents: Brain Injury, New Science, Best Practices and Future Innovations, Amelia Island, Florida. Contact: (800) 321-7037, e-mail: contact@nabis.org, www.nabis.org. OCTOBER 13-16 - Finding a Cure for Brain Injury: Improving Outcomes. Johnstown, Pennsylvania. Contact: (434) 220-4824, e-mail: info@nbirtt.org, web: www.nbirtt.org.
12-15 – American Occupational Therapy Association's 85th Annual Conference & Expo, Long Beach, California. Contact (301) 652-2682, web: www.aota.org.
To list your professional event on this page, e-mail: conference@nabis.org BRAIN INJURY PROFESSIONAL
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[ professional viewpoints ] Controversies in Neuropsychology Paul R. Lees-Haley in his recent article appearing in the previous issue of Brain Injury Professional discusses what he purports are controversies in the field of forensic neuropsychology. The question that one must ask is whether these are ‘real’ and accepted controversies or are created and raised by forensic experts who earn a living serving as defense experts for defendants and insurance companies. As the United Supreme Court recognized in General Electric v. Joiner, 522 US 136, 146 (1997) an expert’s opinion is not admissible only by the ipse dixit of the expert. Dr. Lees-Haley bemoans bias on the part of doctors diagnosing brain damage. However, where is the concern about the bias of doctors claiming no brain injury exists? For example, Dr. Lees-Haley states: "How many mild brain injury plaintiffs are malingering, and do we dare admit it?"1 "Are substantial numbers of postconcussive complaints iatrogenic effects of contact with lawyers and irresponsible clinicians?"2 "The use of self-report data is fraught with controversy."3 "Some experts act as if everything causes concussions and concussions last forever."4 "These experts persist in diagnosing brain injury regardless of contrary evidence."5 "Although the better quality scientific literature clearly indicates the improbability of significant lasting consequences following a mild brain injury, some experts routinely assume they have found exceptions based on self report, even in silly accidents."6 Nowhere in his article does Dr. Lees-Haley focus or even admit the bias against brain injuries by those who profit from such testimony the most. In a recent deposition of Dr. Lees Haley, he advised: His practice is “almost all defense.” His practice is so reliant upon defense referrals his template, or pre written report, already indicates the defense hired him before he even receives the referral. He treats no patients. By the time the case in question comes to trial, his charges could exceed $25,000.00. Is it possible that there could be a built in bias in favor of finding NO brain injury considering the publications one produces and the source from which one’s income rises? I ask, instead, How many mild brain injury patients are falsely accused of malingering and/or having no brain injury? Let’s use the “Fake Bad” scale created by Dr. Lees-Haley as an example. The Fake Bad MMPI-2 scale was created for use with personal injury claimants to detect response bias and intentional symptom distortion. Let’s say a patient has a car accident, hits his head, herniates a disc in his neck. He can no longer work and becomes depressed and anxious. He is on narcotics for pain and pain interferes with his sleep. This is not an uncommon scenario. The following is an example of why this 36
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“malingering” scale might just not be appropriate and could explain why Dr. James Butcher, the individual who co-normed the MMPI-2, as well as Pearson Assessments, remains so opposed to the use of the Lees-Haley Fake Bad Scale on the MMPI-2. The Lees-Haley “fake bad scale” gives this man a point towards malingering for each statement even when the patient is telling the truth. 1. Feeling pain in his neck. 2. Having headaches. 3. Having a great deal of stomach trouble (common, by the way, when taking narcotics and/or if suffering from anxiety). 4. Sleep disturbance. 5. Having a hard time keeping his mind on his task. 6. Feeling like he is about to go to pieces. 7. Having more trouble than others concentrating. 8. Feeling pressure or stress. 9. Feeling tired most of the time. 10. Feeling his difficulties were piling up so much he can’t overcome them. 11. Having an unsatisfactory sex life. 12. Being so sick of what he has to do every day he just wants to get out of it all. 13. Considering killing himself. 14. Tiring quickly. 15. Feeling like everything tastes the same (anhedonia). 16. Having sleep that is fitful and disturbed (pain/depression can certainly cause this). 17. Having trouble with nausea and vomiting (back to side effects of narcotics). 18. Having pains. 19. Having nightmares every few nights (anxiety). 20. Everything tasting the same (anhedonia). 21. And, God forbid the man wears glasses. He even gets a point towards malingering if his eyesight has deteriorated over time. We are now up to 21 points towards malingering when each and every complaint can clearly and honestly be explained by this man’s condition. Now, keep in mind that a man only needs a score of 24 to be considered a malingerer. Pretty easy to reach a 24 score if you hurt, are depressed, and have a brain injury. In fact, one could conclude that failing the Lees-Haley Fake Bad Scale is proof of a brain injury instead of malingering. An example of this type of problem with this “malingering” test is seen in Dr. LeesHaley’s testimony in a deposition taken in the Trotter, et al v. Washington International, et al, case: A: If she is feeling pain in the back of her neck and answers truthfully then that item would be wrong for her. Q: She would get a point for malingering, according to your scale, even when she’s telling the truth. Is that or is that not, Dr. Lees-Haley, correct?
by Dorothy Sims, Esq. A: If she’s feeling pain truthfully and answers the question truthfully, yes. These: “malingering” tests are not the panacea he and others would have you believe them to be. For example: 1. Many courts reject the ability of one witness to comment on the credibility of another. That is simply the job of the jury. 2. A person can still have a brain injury regardless of his or her scores. 3. The results of “malingering” tests do not permit us to conclude, with any accuracy, just what percentage the individual may be lying about. 4. Malingering tests were created by having individuals “pretend” to malinger and “malingering studies have often been criticized because the circumstances under which research subjects falsify (their symptoms or performance) differ from those under which real malingerers operate.“ 5. The fact that a person may not try hard on a test can be an example of low motivation which can be entirely consistent with Major Depression. In fact, the DSM TR suggests that, “Even the smallest tasks seem to require substantial effort. I am confused when he states that “most of us feel that attorneys should not have unrestricted access to tests and their answers…, which is directly contrary to his position in his article in Claims magazine, a magazine relied upon by the insurance industry wherein he states: “Psychologists who claim that the ethical code of psychologists prohibits disclosure of tests and raw test data to attorneys, judges and jurors are misinformed… “Competent psychologists know from the outset that their work will be scrutinized in the context of trial proceedings.” In fact, he goes on to state, “For example, if a psychologist claims an attorney is not qualified to use the data, one must ask, ‘Who is better qualified than an attorney to use the data to cross-examine a psychologist?” He acknowledges, “Without seeing the tests and test data, an attorney cannot possibly fully understand the methodology or the reasoning process used to draw conclusions from test data, and cannot possibly fully cross-examine the expert on the reliability and validity of the allegedly scientific methodology.” It appears, however, that Lees-Haley is only upset that, apparently, the DEFENSE attorney is having difficulty getting the data: “And if psychologists can give the data to a patient or client, who is a plaintiff, then in effect they are giving it to the plaintiff attorney, but not the defense attorney. So, how can they claim to be unbiased?” Dr. Lees-Haley thrashes attorneys and plaintiffs in his article. However, I note he fails to address what appears to me to be a serious problem: Why has Dr. Lees-Haley chosen to leave
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out the problem of defense bias? It’s time to admit the Emperor has no clothes. There is a potential for bias on the part of doctors who evaluate individuals solely for the defense. A bias that seeks to find malingering regardless of the facts. Since my practice is limited to cross examining defense doctors for other lawyers througout the US, I have seen what appears to be an incredible bias towards doing anything possible to avoid relating symptoms to an injury. Now, usually these individuals never have to explain their behavior. Why? Because most attorneys don’t know that raw data can no longer be hidden pursuant to new HIPAA laws, and even if they got it, they wouldn’t understand it. Ok. Now what? What about “research” that supports certain answers that lead one to conclude malingering, or, for that matter, the “fact” that most mild brain injured patients are just plain fine? Perhaps the bias of the researcher should be considered. Bias in publications has long been a serious problem (over-reporting and/or withholding responses). In fact, recent research reveals concealment occurs in data reporting in a MAJORITY of the cases. An observational study found that authors of randomized controlled trials frequently use concealment of randomization and blinding, despite the failure to report these methods. Where in the articles on malingering is it revealed if the author receives the significant bulk of his or her income from the defense who serves to benefit from the article? How about that doctor who cannot come up with ONE single case spanning his or her career wherein he testified he agreed with the treating doctor. That seems like a pretty important fact that ought to ooze its way into the article.
Lees-Haley at page 93. 11. Butcher, James, et al., “The Construct Validity of the Lees-Haley Fake Bad Scale. Does this scale measure somatic malingering and feigned emotional distress?”, Archives of Clinical Neuropsychology, 18 (2003) 473-485. 12. Lees-Haley, Paul.; “Efficacy of MMPI2 Validity Scales and MCMI-II Modifier Scales for Detecting Spurious PTSD Claims: F, F-X, Fake Bad Scale, Ego Strength, Subtle-Obvious Subscales, DIS, and DEB”, Journal of Clinical Psychology, Vol. 48, No.5, pp.681-89 (September 1992). 13. Trotter et al. v. Washington Group Int’l, Inc. et al., Case No: A466763, Dept. No: V111 (D.C. Clark Co., NV), Aug. 2004, Deposition of Lees-Haley at page 262. 14. Lenz v. Commonwealth, 261 Va. 451, 469, 544 SE 299, 301 (2001); Kimberlin v. PM Transport, Inc., 264 Va. 261, 266, 533 SE2d 665, 667 (2002); Feller v. State, 637 So.2d 911 (Fla. 1994); see also, Mills v. Red Wing Carriers, Inc., 127 So.2d 453 (2d DCA 1961). 15. Faust, David & Ackley, Margaret A., “Did you Think It Was Going To Be Easy? Some Methodological Suggestions for the Investigation and Development of Malingering Detection Techniques,” Detection of Malingering During Head Injury Litigation (1998), Cecil R. Reynolds (ed.). 16. DSM 4th Ed, TR page 350, American Psychiatric Association 17. “Are Psychologists Hiding Evidence? A Need for Reform”, Claims Magazine (April 2000), pg. 9. 18. “Are Psychologists Hiding Evidence? A Need for Reform”, Claims Magazine (April 2000). 19. Id. at 1-2. 20. Id. at 2. 21. Id. 22. Id. at 1. 23. Id. at 2. 24. American Psychological Association Code of Ethics, 11.04, www. APA.org 25. Higham PA, “Strong cues are not necessarily weak: Thomson and Tulving (1970) and the encoding specificity principle revisited”; Memory and Cognition, 30(1):67-80 (01-JAN-2002), NIH/NLM MEDLINE, 11958356 (PubMed); Department of Psychology, University of Southampton, Highfield, England. 26. J Clin Epidemiol. 2004 Dec;57(12):1232-6. 27. Devereaux PJ, et al., Choi PT, El-Dika S, Bhandari M, Montori VM, Schunemann HJ, Garg AX, Busse JW, Heels-Ansdell D, Ghali WA, Manns BJ, Guyatt GH; Department of Medicine, Department of Clinical Epidemiology and Biostatistics, Faculty of Health Sciences, McMaster University, Room 2C8, 1200 Main Street West, Hamilton, ON, L8N 3Z5, Canada.
Conclusion If one describes malingering as an individual modifying his or her behavior for external gain, does not the potential for that very same problem exist with the doctor him/herself? Could it be that this type of behavior is based on the territorial protection of a feeding source? There is much more money in forensic neuropsychology than for the poor practitioner who is out there in the fields, arguing with insurance companies who downcode his or her bills, or downright refuse to reimburse for treatment and whose treatment for years may be 1/10th the bill for a single evaluation by a “forensic” neuropsychologist as a result of one of those “silly” accidents. My heart goes out to those fine people, and their poor patients.
REFERENCES 1.
Lees-Haley, Paul R., “Forensic Neuropsychology: Still Controversial After All These Years,” Brain Injury Professional, pp. 6-10, 6. 2. Id. at 6. 3. Id. at 8. 4. Id. at 8. 5. Id. at 9. 6. Id. at 9. 7. Trotter et al. v. Washington Group Int’l, Inc. et al., Case No: A466763, Dept. No: V111 (D.C. Clark Co., NV), Aug. Deposition of Lees-Haley at page 94. 8. Trotter et al., Deposition of Lees-Haley at pages 23-25. 9. Trotter et al., Deposition of Lees-Haley at page 68. 10. Trotter et al. v. Washington Group Int’l, Inc. et al., Case No: A466763, Dept. No: V111 (D.C. Clark Co., NV), Deposition of
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professional appointments
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Multiple Openings - Lakeview Specialty Hospital & Rehabilitation has the following available opportunities open: Resident Assistant, Director of Therapy Services, Certified Nursing Assistant; Registered Nurse, Licensed Practical Nurse, Driver, Receptionist; Respiratory Therapist, Housekeeping, Charge Nurse. Qualified candidates will have the ability to work with all ages and be skilled in the treatment of TBI and a wide range of neurological disorders. We provide a competitive compensation and benefits package in a team-oriented work environment. Lakeview Specialty Hospital & Rehabilitation, 1701 Sharp Road, Waterford, WI 53185, (262) 534-7297, fax (262) 534-8579, TTY (262) 534-8596. For more information visit: www.lakeviewsystem.com EOE-JCAHO Accredited. Behavior Specialist - ResCare Premier, a recognized leader in brain injury rehabilitation, is looking for a full-time Behavior Specialist at the Texas Hill Country School in San Marcos, Texas. Master’s degree with specialization in Behavior Analysis required and Behavior Analyst Certification preferred. 1-2 years experience in field of acquired brain injury or working with children with neurological behavior disorders preferred. Please email resume to: Patrice_adoue@rescarepremier.com or fax to 512.396.2024 EOE, M/F/D/V
Physical Therapist - Tree of Life Services, a nationally known transitional/residential rehabilitation program directed by Nathan Zasler, MD, is seeking a full-time physical therapist due to program expansion. Experience in neurorehabilitation highly preferred. Must exhibit good interpersonal skills, great initiative and flexibility. Excellent opportunity to shine and grow as an active part of a comprehensive rehabilitation team. Highly competitive salary. Please e-mail resume to: abrown@cccv-ltd.com or fax to (804)346-1956 to the attention of Andrea Brown. Life Skills Trainers, FT/PT - Learning Services has Life Skills Trainer positions at locations around the country. Visit www.learningservices.org for more information. Stroke Coordinator - Centinela Freeman Regional Medical Center has an opening for a Stroke Coordinator with the following requirements: California RN license, Minimum 5 years Acute Hospital experience, 3 years Neuro, Current BLS and BSN or equivilant. Responsible for Case Management (24/7) of the Neurosurgical and Neurological patient from pre-admission to post discharge, education of the patient and family, discharge planning, utilization review and post discharge follow-up. Contact Joan Ahern, (310) 419-8228, Joan.Ahern@centinelafreeman.com.
To list your professional appointments on this page, please contact Joyce Parker, (713) 526-6900, or by e-mail: jparker@hdipub.com.
Quality Scorecard... continued from page 27 Blazey, M.L., Ettinger, J.H., Grizzell, P.L., & Janczak, L.M.: Insights to Performance Excellence in Health Care 2003. Wisconsin: Quality Press, 2003. Deming, W.E. Out of Crisis. Cambridge, Mass: MIT Press, 1986. Evans, R.W. & Jones, M.I., Integrating outcomes, value, and quality: an outcome validation system for post-acute rehabilitation programs. Journal of Insurance Medicine. 23: 192-196, 1991. Evans, R.W. & Malkmus, D. (Eds) Outcome and value in brain injury rehabilitation. Journal of Head Trauma Rehabilitation, 7(4), 1992. Condeluci, A., Ferris, L.L., & Bogdan, A., Outcome and value: The survivor perspective. Journal of Head Trauma Rehabilitation. 7(4): 37 – 45, 1992. Commission on the Accreditation of Rehabilitation Facilities CARF, Medical Rehabilitation Standards Manual. Tuscon, AZ, 2004. Fuhrmans, V., Health-Care costs surge set to ease. Wall Street Journal, Oct. 6, 2004. Huff, C., Job Satisfaction: Why your job isn’t a bowl of cherries. Nurseweek Healthweek, Oct. 23, 1997. Joint Commission on Accreditation of Healthcare Organizations JCAHO, Standards Manuals 2004-2005. Oakbrook Terrace, Ill. Knottnerus, A. & Dinant, J.G. Medicine based evidence, a prerequisite for evidence based medicine. British Medical Journal, 315, 1997. Lezak, M. & Malec, J. Mayo-Portland Adaptability Inventory. Center for Outcome Measurement in Brain Injury (COMBI) web site. Available at: www.tbims.org/combi/mpai 2003. Ling, J.S. & Evans, R.W. The influence of outcome studies on rehabilitation policy. Journal of Head Trauma Rehabilitation, 12(1), 1997. Lovern, E., The privatization of quality. Modern Healthcare. January 28, 2002. McMorrow, M.J., Braunling-McMorrow, D., & Smith, S. Evaluation of functional outcomes following proactive behavioral-residential treatment. Journal of Rehabilitation Outcomes Measurement, 2(2), 1998. McMorrow, M.J., PEARL: Five components of active treatment interaction. Brain Injury Association of Wisconsin News, 22(1), 2003. U.S. Department of Health and Human Services. Bureau of Health Professions National Center for Health Workforce Analysis, Rockville, MD 2002 Weiner, S.J. From research edivence to context: the challenge of individualizing care. Evidence Based Medicine, 9, 2004. Weingart, S.N., Wilson, R.M., Gibberd, R.W., Harrison, B. Epidemology of medical error. British Medical Journal, Mar 18:320(7237), 2000.
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