Brain Injury Professional, vol. 4 issue 3 by Nikolai Alexeev

BRAIN INJURY professional vol. 4 issue 3

The official publication of the North American Brain Injury Society

Lifelong Living with Brain Injury

• The Critical Nature of Social Capital – An Organizational Story • Brain Injury Services: Roads Not Taken • The Path to Possible Selves: Restoring Hope in Individuals with Traumatic Brain Injury • Lifelong Living Revisited • Brain Injury and Social Exclusion: A New Opportunity for Communty Action • In Search of Eden: Deinstitutionalizing Long-Term Living Environments BRAIN INJURY PROFESSIONAL

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contents

BRAIN INJURY professional vol. 4 issue 3, 2007

The official publication of the North American Brain Injury Society

north american brain injury society

departments 4 Executive Vice President’s Message 6 Guest Editor’s Message 14 Book Review 32 Non-Profit News

chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family liason Julian MacQueen executive vice president Ronald C. Savage, EdD executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD 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 Editor in Chief Ronald C. Savage, EdD founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Joyce Parker

EDITORIAL ADVISORY BOARD

features 10 The Critical Nature of Social Capital – An Organizational Story by Al Condeluci, PhD, Jeffrey Fromknecht, MSW 16 Brain Injury Services: Roads Not Taken By Debra Braunling-McMorrow, PhD 20 The Path to Possible Selves: Restoring Hope in Individuals

with Traumatic Brain Injury By John Sassin, PhD (ABD), CRC 22 Lifelong Living Revisited by Harvey E. Jacobs, PhD 26 Brain Injury and Social Exclusion: A New Opportunity

for Communty Action BY Lynn C. Todman, PhD and Sherrod Taylor, JD 28 In Search of Eden: Deinstitutionalizing Long-Term

Living Environments By Sandy Ransom and Greg Walton

Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD

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 Email: contact@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. © 2007 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 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com

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executive vice president’s message

Meaningful work. Safe housing. Loving companionships. Person-centered planning. Financial security. Social networks. Choice making. Community in-

blocks, those components that make all our lives so enjoyable. In fact, the majority of people with brain injuries are forever “disadvantaged”. They live in poverty and have difficulty accessing jobs, affordable housing, transportation, healthcare and meaningful relationships. They are without

Ronald Savage, EdD tegration. The list of “real life outcomes” for persons with brain injuries is endless. As a society we have long recognized that all people embrace the right to life, liberty and the pursuit of happiness. Yet, as our guest authors eloquently point out, the majority of people with brain injuries achieve only a few of these life building

BRAIN INJURY PROFESSIONAL

people “social capital”. Dr. Condeluci, a returning Plenary Speaker at the 2007 NABIS Conference, cites research studies that document the positive impact that social capital has on our health and happiness. Furthermore, he states, when one examines human service systems for people who are disadvantaged in North America, three particular measures— jobs, housing and transportation—are often the core activities to building social capital. A place to start; a place to build; a place to grow.

Professionals working with people with brain injuries have long understood that working in isolation does not produce long term changes. It takes a team of service providers working diligently together and it often requires changing the existing systems, i.e., those agencies, funding streams, and/or decision makers who are resistive to change. Professionals must be “change agents, as well as highly skilled technicians…” according to Marilyn Price Spivak, the Godmother of Brain Injury in America (who still holds everyone’s feet to the fire). Furthermore, professionals must recognize that “brain injury is us” or, as Dr. McMorrow so superbly states: “Along the way, I have been moved and frequently humbled by the realities that many people must face after having experienced a life-altering disability. The truth is that any one of us could be standing in those shoes, and I often remind myself of that fact. For the most part, brain injury is non-discriminatory and unanticipated.” NABIS wishes to thank with great appreciation David Seaton, our Guest Editor, and the extraordinary authors he assembled for creating an issue of BIP that challenges all of us to think with our hearts as well as our brains. Ronald Savage, EdD

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guest editor’s message Several years ago, I began a conversation with the Board of Directors of NABIS about the need for our profession to directly address and openly discuss the fact that a severe brain injury was a lifelong disability. In 2005, NABIS invited me to write the lead

David Seaton article in Brain Injury Professional’s issue on Brain Injury and Community Based Issues, “Acknowledging Severe Brain Injury as a Chronic Disability” (vol. 2 Issue 1). And for the past two years, NABIS has focused additional attention on the issue by introducing a Life-Long Living professional track at their annual conference. With this issue of Brain Injury Professional, I have been given the opportunity to deviate from the traditional journal topics addressing medical treatment and current research and focus on holistic and social issues related to lifelong living after a brain injury. I would like to express my gratitude to Ron Savage and Bob Voogt for their support in my commitment to bring this important issue to the forefront and to thank the outstanding writers who have contributed to this edition. I was extremely fortunate to enlist a great group of professionals, each with more than 25 years of experience in their respective fields, to share their unique perspectives and experiences regarding lifelong living with a brain injury.

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The greatest challenge for the millions of individuals affected by a severe brain injury is to recognize it as a chronic disability and to plan accordingly. Over the years, it has become painfully clear that a severe brain injury quickly evolves from a medical/rehabilitation phenomenon to a lifelong sociological issue. As professionals, we acknowledge that lifelong support differs from other types of healthcare in that the goal is not to cure or “fix” the disability, but rather to provide an environment where the person can maintain optimal functioning and experience long-term well-being. Today, individuals with severe brain injury are faced with the same challenges and questions that existed 25 years ago: How can they reintegrate into their communities and family, reframe relationships, secure employment and above all, manage the new reality of their lives? And so, that has also become our challenge as a professional community. As I wrote two years ago, “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.” And I have never believed this more strongly than I do today. The lead article on the topic of social capital was beautifully written by Al Condeluci, PhD & Jeffrey Fromknecht, MSW, and sets the tone perfectly for the remaining articles. Al has enlightened our industry for years with his passion, forethought, and commitment to advancing community integration and inclusion of individuals with disabilities. Debra Braunling-McMorrow, PhD, eloquently shares her 25 years of experience to stress the importance of continuing to challenge ourselves as service providers to seek applicable, interesting, desirable and affordable community support options for people with brain injury as their needs change throughout their lives. The article written by veteran professional Harvey E. Jacobs, PhD clearly presents the challenges faced by persons who have experienced a traumatic brain injury after formal rehabilitation has ended and advocates for a

stable discharge environment that will allow the individual to get on with the business of living life. Sandy Ransom and Greg Walton have contributed a piece that presents one of the most exciting philosophies and movements to come to long-term care. They offer an illustrative case study and discuss in detail the approach of Eden Alternative®, which emphasizes person-directed supports and individual autonomy to the greatest extent possible, personal relationships and connectedness between individuals, the inclusion of naturalistic elements such as plants, animals and children in the living environment. The important role of hope in recovery and the anticipation that our actions will have a positive consequence is discussed by John Sassin, PhD, (ABD), CRC. Sherrod Taylor, JD and Lynn C. Todman, PhD, detailing the processes through which certain individuals and communities of people are systematically blocked from access to the rights, opportunities, and resources that are normally available to members of a society in which they live and that are key to social integration. Finally, I’d like to personally dedicate this issue of Brain Injury Professional to the memory of a dear friend and colleague, Dr. Randy Evans, who sadly passed away this past July. For the past 20 years Randy was committed to improving the lives of individuals with brain injury and was a shining light adored by many. Randy will be dearly missed, but not forgotten, by the many of us who were fortunate to know him and call him a friend. A Tribute page in memory of Randy has been included in this issue. About the Editor:

David Seaton is Owner/CEO of Therapeutic Communities (www.tc-tx.com), which provides long-term residential programs in San Marcos and Austin, Texas for individuals with brain injury and other chronic disabilities. He’s also served as the President of the Seaton Foundation since 1987 and Center for LifeLong Planning (www.CLLP.org). He has worked with adults with cognitive disabilities for 25-years and has served on numerous local, state and national boards. e-mail: ds@tc-tx.com

In Memoriam ~ Dr. Randy Evans Dr. Randy Evans, Neuropsychologist and Consultant for The Mentor Network, suddenly passed away last Friday, July 6, 2007. Dr. Evans was a renowned expert in both ABI policy and clinical practices. He frequently wrote and lectured on ABI issues and has served as a member of the National Leadership Panel for CARF and other national organizations. Dr. Evans received his Ph.D. from the United States International University in San Diego and has completed post-doctoral work at the University of California and University of North Carolina medical schools. He was a Fellow at the National Academy of Neuropsychology and is Board Certified in Rehabilitation Psychology.

They say that you can learn much about a person by playing a round of golf with them. I had the good fortune to play golf with Randy a year ago in my home course in Austin. We pretty much spent the day and late into the evening playing golf, eating and drinking at my favorite places and passing the time talking about our personal lives, professional endeavors, problems in the industry, and of course sports. For anyone who spent any time around Randy, you would not be surprised to hear me say that the depth of knowledge, complexity of thinking, humor and passion he evidenced were truly remarkable. That day in Austin however, and later when I visited him in North Carolina, I was struck by what a rarity he was. In my lifetime, I do not think I have known anyone who had so many personal and professional gifts. He excelled in clinical, administrative, research, and business skills. He was clearly peerless, but was quick to disarm any compliment with a self-deprecating sense of humor. He did not take himself (or anyone else for that matter) very seriously. Perhaps that contributed to his success. When I heard the news of his passing, I, like all who knew him, was shocked. He was so vital and alive. He seemed to burn bright. We will miss his light. Walter Harrell, PhD Like so many others, I will miss Randy’s knowledge of the issues faced by persons with brain injury...and his endless tidbits of information and “inside scoops” on who was doing what, when, where and how. Perhaps more than this, however, I will miss certain aspects of his character...his smile, his laughter, his sometimes silly jokes and commentary. No matter what, Randy was always moving forward. He had a special sense of optimism that things would work out, even when the evidence seemed to suggest otherwise. He never stopped “fighting the good fight” for people with brain injuries, as well as those (all of those) who attempted to assist them. I do regret that I never got to play golf with him, that “my team” never got to play his mighty Tarheels, and that I won’t have just one more opportunity to “hang out” with him. Marty McMorrow, MS There are two things that come to mind when I think of Randy. First of all I never heard him say a negative word about anyone. He respected the people he worked with, both internal to the companies that he was involved with and externally. To Randy it was not an issue of competitors it was an issue of colleagues. I heard him say many times; “Hay man we’re all in this together.” Secondly, he was truly able to find humor in almost any situation. Not the kind of humor expressed at the expense of another, but the humor of the moment. His wit was second to none. He was a professional colleague it’s true, but more importantly he was a friend. I will miss him. David K. Krych, MS, CCC-SLP Those of us who everyday are faced with tragic situations in our professional lives, are not ready when death steals one of our own from us. I will miss him personally and professionally. He was one of the pioneers of the brain injury movement. Prayers for his family, friends and all of us. Robert Voogt, PhD Randy Evans provided a unique mix of academic curiosity, intellectual wonderment and entrepreneurial drive to challenge and expand the means in which services to people who experience disability following brain injury are provided, and the quality and integrity of such services. Harvey E. Jacobs, PhD

Dr. Evans joined the Mentor Network in 2002, where he worked in collaboration with other Acquired Brain Injury (ABI) experts and Network leaders to create a network of services across the country for those suffering from brain injuries, and their families. Prior to joining The Mentor Network, Dr. Evans served as President and CEO of Learning Services Corporation of North Carolina. He also previously worked as a clinical psychologist, and remains a faculty member at the University of North Carolina School of Medicine. Randy’s passing is a tremendous loss for all of those who were lucky enough to have met or worked with him. Randy was a wonderful man, and a leader in the acquired brain injury field. He will be deeply missed by all of those who knew him.

“Perhaps my time seemed all too brief, don’t lengthen it now with undue grief… If my parting has left a void, then fill it with remembered joy.” I remember starting at Learning Services the same week as Randy in 1987 and working nine years with him. I remember all those raw oysters we ate at Union Bay Oyster House in Boston at our quarterly meetings. I remember we both named our daughters “Madison”, born around the same time. I remember our whitewater rafting adventure on the Arkansas River. I remember Randy’s cool neckties, his tassled shoes, his contagious laughter, his intelligence and wisdom, his thoughtful counsel, his pride about his children, and his friendship with a “Hoser” from Colorado. Thank you Randy, we lift up our hearts to you as we remember and celebrate your life. Kenny Hosack, MA Randy was a true mentor to me as a marketer, meaning that he wanted to educate and always put people in touch with one another. His goal in doing this was to discover ways to serve more people with brain injury. Randy always trusted those he worked with to be the best they could be. That level of confidence was inspiring. Beth Crawford

Dr. Randy Evans NABIS Award for Clinical Service The North American Brain Injury Society is pleased to announce the creation of the Dr. Randy Evans NABIS Award for Clinical Service. This award, which will be given annually at the NABIS Conference, will recognize professionals who “follow in Randy’s footsteps” in developing needed and innovative services for individuals with brain injuries. Each recipient will be awarded a one year scholarship to help him or her develop an idea or service to promote independence in individuals with brain injuries, especially for

those individuals with life long needs. The Dr. Randy Evans Scholars will then present their projects or research at the NABIS Conference the following year to help disseminate their ideas to others. Brain injury professionals are asked to pledge their support to fund this award. Pledges may be extended over several years. To make a pledge, please visit www. nabis.org. BRAIN INJURY PROFESSIONAL

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The Critical Nature of Social Capital – An Organizational Story

Al Condeluci, PhD, Jeffrey Fromknecht, MSW

It’s amazing how ideas can often interconnect without us even knowing. Then one day, a light bulb goes off in your head and you see the interconnection. I experienced this phenomenon a few years ago while working at Community Living and Support Services (CLASS) with UCP of Pittsburgh (CLASS/ UCP). CLASS/UCP serves people with a wide range of abilities who live in the Pittsburgh, PA area. It offers programs that build on individual strengths and promote inclusion in the community - we are working toward a community where each belongs. Frequently we feel frustrated as we watch our clients struggle to find jobs, housing, and transportation, and our agency focuses on these issues. Trying to address these struggles using traditional methods has yielded little success. Then, we were introduced to the concept of social capital and began to look at this approach as one that might bear more fruit in our challenge. Social capital is a term that refers to “the connections and relationships that develop around community and the value these relationships hold for the members.” (Condeluci, 2002) Clearly, all people have some form of social capital, but recently sociologists have come to realize the power and potency of this concept. We began to think and research social capital and how we might harness this concept to better serve our clients. We looked at the literature, went off to conferences, and, ultimate10 BRAIN INJURY PROFESSIONAL

ly, wrote a couple of books ourselves on the topic (Cultural Shifting, 2002; Together is Better, 2005). As we reviewed the literature, we discovered that social capital had a direct impact on the people whom we serve, helping them to be healthier, happier and live longer. (see Cohen et al, 1997; Cohen, 2001; Cohen, 2004; Cohen & Pressman, 2004; Halpern, 2005; Leana & Pil, 2006) Then, the light bulb went off. I began to consider that if social capital could improve the lives of the folks we serve, might it be harnessed within our own agency’s walls to provide similar benefits? After all, CLASS/UCP’s greatest administrative challenges are health care costs, employees being happy in their work, and retention of quality staff. Did the light bulb go off for you just then? If social capital positively impacts these three things for individuals—healthfulness, happiness and longevity—shouldn’t it do the same for organizations? UCP has uncovered many powerful studies that support social capital’s influence in individual, community, organizational success and well being. This article provides an introduction to the concept of social capital and its benefits for both individuals and organizations, and reports on our agency’s initial efforts to harness this concept in order to see if it could be successfully applied organizationally to ultimately enhance outcomes for the men, women, and children that CLASS/UCP supports.

A Social Capital Primer

Alexis de Tocqueville (1883) first wrote about the concept of social connectedness in his 1883 analysis of the United States titled “Democracy in America.” In this work, de Tocqueville described a phenomena he called “habits of the heart,” where people watched out for each other for no other apparent reason than “what is good for you is good for me.” In the 1900s, Americans began to enhance these “habits of the heart” to a whole new level. As our society shifted from primarily agrarian to industrial mode, and as immigrants came from all the Eastern European countries, all types of clubs, groups and associations began to develop and grow. From 1871 until 1920, over sixty groups moved from a parochial context to become nationwide entities, all creating a buildup of culture, community and connections. People need people and need to feel useful. L. J. Hanifan first coined the idea of social capital in 1916 although his focus was to put a “face” on the notion of “habits of the heart” that de Tocqueville identified in 1883. He defined social capital as: “those tangible substances that count for most in the daily lives of people: namely good will, fellowship, sympathy, and social intercourse among the individuals and families who make up a social unit (Hanifan, 1916).” James S. Coleman (1988) describes social capital as fluid and “defined by its function,” explaining that social capital involves the actions between “actors” in a social network or community that are “productive, making possible the achievement of certain ends, that in its [social capital’s] absence would not be possible”. Coleman further explains that “actors” can be individuals or organizations and that both reap the benefits of social capital. The notion of social capital is critical to all of us. Social capital is a universal issue — affecting and impacting everyone — a key ingredient in a community where each belongs. Stop and think about it. Your life is a complex web of people to whom you relate on various levels and on whom you rely for various things. Those people you are closest to are your “covenant relationships.” These are the people you love, with whom you spend the most amount of time, and with whom you have the most social reciprocity. Next, the people with whom you freely exchange and share common interests make up your “friendship” relationships. Last are the people that you know and see in your daily or weekly activities. You exchange pleasantries with these folks and might even discuss or debate events around you, but you do not go much beyond these dimensions. Robert Putnam (2000) defined the concept of social capital as “referring to connections among individuals – social networks and the norms of reciprocity and trustworthiness that arise from them … (It) is closely related to … civic virtue … A society of many virtuous but isolated individuals is not necessarily rich in social capital.” In summary, social capital is the result of relationships, trust, social reciprocity, norms, culture, and community. De Tocqueville and Hanifan discussed the societal dimensions of social capital. CLASS/UCP believes that relationships and friendships are the building blocks for the “habits of the heart”—or social capital—these authors discuss. Social capital is a dynamic concept and can be discussed and studied from a micro (individual or family), meso (community

or organization), and/or macro (city, state, or nation) perspective and often these artificial designations overlap (Halpern, 2002; Putnam, 1996). Halpern (2002) suggests that a community’s aggregate social capital – social trust, norms of social reciprocity, and participation in the community – can have a positive impact on the whole community, including those with less or limited social capital. The following review highlights the poignant social capital literature. Social Capital and Health

Over the past 25 years, researchers have been looking closely at the potency of social capital on health and happiness. Study after study has concluded that the more social capital an individual has, the fewer sick days and sad days they experience. A 1979 study, by Berkman and Syme, done in Alameda County, California found that healthy adults who were more socially integrated with deeper forms of social capital, such as wives/ husbands/partners, as well as with close friends and associates, were more likely to still be living nine years post-study than others who were less connected (Berkman & Syme, 1979 as cited by Berkman & Kawachi, 2000). Twenty years later, Berkman and Glass found that the more social capital present, the greater the survival rate from heart attacks, less risk for cancer recurrence, less depression/anxiety, and less severe cognitive decline with aging (Berkman & Glass, 2000 as cited by Berkman & Kawachi, 2000). Similar studies over the same timeframes found that social capital predicts who is resistant to illness. Going even further, the literature suggests that social isolation (the lack of social capital) actually causes disease (Putnam, 2000). Dr. Sheldon Cohen, a researcher at Carnegie Mellon University, has examined the effects of social capital on health. His research is clear – social capital prevents illness. For example, in a series of carefully controlled experiments, Cohen (1997; 2004) exposed subjects to a virus known to cause the common cold. The study demonstrated that those with more social capital, in terms of supportive relationships and sociability, were significantly less likely to ‘catch a cold.’ Summarizing all of this research, Robert Putnam (1995, 2000) contended that social capital is not only essential to individuals, but it is also critical to communities overall because it: • allows citizens to resolve collective problems more easily • “greases the wheels” that allow communities to advance smoothly • widens our awareness of the many ways we are linked • lessens pugnaciousness, or the tendency to fight or be aggressive • increases tolerance • enhances psychological and biological processes The fact that social capital keeps us safe, sane and secure cannot be understated. Most of us tend to think that institutions or organizations are keys to safety. Places like hospitals or systems like law enforcement are thought to keep us safe, but the bold truth is that these systems have never really succeeded in keeping us safe or healthy. Rather, it is the opportunity for relationships that community offers us, as well as the building of social capital. Simply stated, your circles of support and the reciprocity they create are the most important element in your BRAIN INJURY PROFESSIONAL

safety. In fact, Putnam reports that social isolation is responsible for as many deaths per year as is attributed to smoking. Drilling deeper on this critical nature of social capital, Sheldon Cohen (2004) contends that there are two major aspects responsible for these positive effects — the “main social effect” and “stress buffering.” The “main social effect” is the obvious nature of having your social capital available to support you. This “main social effect” promotes positive psychological aspects of identity, purpose, self-worth and other pro-social aspects that induce health-promoting physiological responses. It also provides information and is a source of motivation and social pressure to care for oneself. “Stress buffering” asserts that social capital promotes health by providing psychological and material resources needed to cope with stress. Quite simply, this concept suggests that stress has an adverse effect on health and that social capital buffers the ill effects of stress. The more friends you have, the more you can get assistance in dealing with stressful situations. When someone faces stress alone, the interpretation of the stressful event has ill effects. But, if you can talk with friends about this stressful situation, often the interpretation is softened, and you can face the stress with less negative impact. Without a doubt, the potency of social capital is a concept with which to reckon. The research, studies and reviews are overwhelmingly consistent in their conclusions that the more relationships people have, especially key, close relationships, the better they are able to deal with the stresses of life and the better their lives become. Tom Rath (2006) suggests that the literature also indicates that one need not have a lot of relationships. Studies seem to show that the positive effects of social capital kick in when people have at least four close relationships. Curiously, more than four do not necessarily make your life better, but less than four lead to serious ill effects. This study was done at Duke University Medical Center in 2001 with patients afflicted with heart disease. Over a four year span, they found that people in the “isolated” group (those with fewer than four friends) were more than twice as likely to die from heart disease. Social Capital and Life Success

Beyond the health and safety benefits, there is mounting evidence that social capital has a positive effect on the more tangible outcomes associated with life success. That is, when one examines key life success outcomes, some simple areas can be isolated for review. These are: • Jobs and meaningful things to do • Housing and living choices • Transportation to engage in community Certainly, there are other outcomes important to people, but when you look at any human service systems anywhere in North America supporting people who are disadvantaged, these three measures—jobs, housing and transportation—are often the key activities supported by services. Be they poor, elderly, disabled, addicted, homeless or otherwise socially disadvantaged, systems and services are trying to help people get established in these three domains. In CLASS/UCP’s area of 12 BRAIN INJURY PROFESSIONAL

expertise—supports to people with disabilities—these areas are critical, and funding sources are looking to measure our success within them. Yet, when these three areas are closely examined, success in each one is linked to social capital. Quite simply, the more social capital people have, the more options people have in each of these critical life success areas. Consider your typical experiences here: Jobs and meaningful things to do – Regardless of your age, if you look closely at your employment history, you can probably trace your success back to your social capital. Networking is often key in job searches, and when you think about your jobs and how you obtained them, probably a friend, family member or associate was directly involved. Then, when you applied or interviewed for that job, you listed more of your social capital as job references. Moreover, when the interviewer called your references, these people (your social capital) vouched for your integrity, diligence, and competence, even if they had to stretch! In our experience, there are some clear coincidences in this area of jobs. One is that people with disabilities are overwhelmingly unemployed or underemployed. In fact, national statistics (National Organization on Disability, 2004) suggest that close to 76% of people with disabilities (16 to 60 in age) are unemployed or underemployed, and our experiences support this data. Similarly, our experiences also reveal that the folks we support who are unemployed are equally socially isolated with limited social capital. Housing and living choices – Most disadvantaged people are extremely limited in housing options. Safe and affordable housing is often out of reach to people of limited means. Consequently, many of these people are in substandard housing, in the most vulnerable areas, and with the worst school systems, resources and the like. In the most severe situations, disadvantaged people end up homeless or on the streets. Just as we see with jobs, people with limited social capital are also limited in housing options. In our work in disability, this housing disparity is overwhelming. Along with the limited social capital to assist with housing, many people with disabilities have the added challenge of needing accessible housing. The net result is that the best that the human service system is offering right now is to build segregated or congregated housing specifically for people with disabilities. This isolation not only adds to the social stigma, but further limits the opportunity to build new social capital. The spiral continues. The National Council on Disabilities (2001) reports that the overall home ownership data suggests that close to 71% of adults in a community either own their own home or live with someone they love who owns the home. Yet when they isolate the adult disability population, home ownership drops to 6.2%. Of course, when you factor in the unemployment rate of people with disabilities (76%), then this cohort becomes the poorest in the country, so who can afford a home? And what bank will lend to someone who doesn’t have a job? Again, when we factor in social capital, the impact is clear. People with more social capital have greater options in housing

and housemates. If you needed to change your living arrangement quickly, for whatever reason, your social capital would be there to bail you out. You might have someone who could take you in temporarily and then help you find a new place to live, or perhaps you would move in with them on a more permanent basis. The net result is that social capital is a key factor in preventing homelessness. Transportation to engage the community There is no doubt that the ability to get around in the community is critical to a person’s life success. Getting to work, meetings, appointments or to recreate are key to keeping a person (or family) moving forward. Quite simply, the more limited you are in getting around, the more limiting life becomes. People who are disadvantaged are usually limited in transportation options. If you don’t have a job, often you cannot afford a private vehicle. This leaves either public transit or finding friends to transport you. If public transit is not available, and you have limited social capital, you are stuck. Furthermore, if you need some special features in transit, such as accessibility, you are even further isolated. Ironically, if you cannot get into community, then your chances of building social capital are further affected. Yet we know that social capital is key to assisting in transportation if you do not have or cannot operate a vehicle. This is a cruel no-win situation. Disadvantaged People and Social Capital

It is safe to suggest that people who are disadvantaged anywhere in North America are equally limited in social capital. There is very little literature to corroborate this statement which, in and of itself, is revealing. No one has cared to even measure the social capital network of disadvantaged people. Still, if you have any exposure or contact with groups of people that are often at a disadvantage—the elderly, poor, disabled, homeless, and addicted—be certain that these cohorts are disconnected from social capital. Similarly, disadvantaged people are limited in all the aspects that social capital affects: jobs, housing, and transportation are all challenging areas for devalued people. Equally, we know that disadvantaged people have more sick days, more depressed days and, in some cases, have a higher mortality rate. This is certainly true with the homeless, addicted, poor, and disabled populations. Without any detailed studies, conventional wisdom tells us that all of these populations are more socially isolated than other groups. Without the resources, energy, accessibility, or general community acceptance, members of these disadvantaged groups languish in the area of social capital. To this end, it seems that human services for these groups of people are missing the boat. Each year, millions of public and private charitable dollars are directed to “helping” disadvantaged groups, but without efforts to identify and strategies to help build social capital, it appears that these efforts will be doomed to failure. Social Capital at CLASS/UCP

Armed with this general and specific interest in social capital, our leadership team at CLASS/UCP began to explore ways of

harnessing social capital within our organization to see if we could reap the many benefits of this concept. We began to talk about it within our organizational context and started to consider ways we can facilitate coworker connections. One early effort was to create a Safety and Wellness Committee (SWC). This group was recruited from throughout our agency and empowered to think about ways we could bond more and, in this effort, keep ourselves safer and healthier. The SWC meets on a regular basis and explores ways and means to this goal. As the SWC deliberated, many ideas grew. One idea was to sponsor a Weight Watcher’s™ club at the agency. We negotiated with our health care provider and were able to get reimbursement of half of the cost for staff that signed up and finished the program. CLASS/UCP opted to cover the costs for the other half. Forty people enrolled in the first round and, not only did the pounds begin to come off, but other interesting things also unfolded. Consider these positive benefits: • People began to eat healthier: the morning donuts gave way to fruits and “low-point” items. • Folks began to walk more at lunch and on breaks. • People from various divisions in the agency began to learn more about each other and the work they do, leading to greater respect, trust and more effective interoffice communication. • Folks seemed to be more supportive of each other, cheering the good stuff and supporting each other through the bad stuff. • Other side benefits unfolded, such as people talking about and sharing books that they were reading. • Maybe it was (is) a halo effect, but folks seem more pleasant, upbeat and kind. • We started to see a decrease in sick days, although we are continuing to collect firmer data. Beyond the Weight Watchers™ group, we have begun to find other ways to build social capital at our agency. We have supported many social/recreational opportunities for our employees and their families. When we organize some of these events, we try to incorporate some social capital “bridging” questions that allow folks who may not know each other to discover ways in which they are similar. CLASS/UCP also incorporated our Board of Directors into the process. We spent a full board retreat on the concept of social capital and conducted some bridging exercises with the members. We also try to deliberately position or seat people with other folks they may not know as well. More recently, CLASS/UCP has established the “Social Capital Workgroup.” The workgroup meets regularly to discuss social capital literature and has been developing a Social Capital Training Curriculum and a CLASS/UCP Social Capital Project. The curriculum is going to be part of a new CLASS/UCP Human Resources training series set to launch in 2008. The curriculum is designed to educate all participating CLASS/UCP staff and consumers about the notion of social capital and its importance. Staff will share their knowledge and discuss social capital with folks supported by CLASS/UCP. The CLASS/UCP Social Capital Project is an effort intended BRAIN INJURY PROFESSIONAL

to collect data and information that can be used to advocate for more programs and funds designed to promote and initiate social capital building, not only for people with disabilities, but for everyone. Conclusion

We are early in our voyage, but CLASS/UCP is convinced that the route to success in community, no matter the group or agenda, rests in understanding the concept of social capital, and then developing strategies and supports to facilitate building, maintaining, and sustaining social capital among both the disadvantaged groups we serve and everyone affiliated with our organization. When human service agencies move in this direction, CLASS/UCP is convinced that the field will not only make real progress in helping people find value and relevance in community, but also reap the benefits that social capital offers, for our organizations and for those we serve. References

Berkman LF. Kawachi IK, Ed., Social Epidemiology. New York: Oxford University Press, Inc., 2000. 137-173 Cohen S. Doyle WJ. Skoner DP. Rabin BS. Gwaltney JM, Social Ties and Susceptibility to the Common Cold. JAMA 277(24): 1940-1944, 1997. Cohen S, Social Relationships and Health. American Psychologist: 676-684, 2004. Cohen S. Pressman S, Stress-Buffering Hypothesis. Encyclopedia of Health & Behavior. edited by N. Anderson. Thousand Oaks: SAGE Publications, 2004. Cohen D. & Prusak, L. In Good Company: How Social Capital Makes Organizations Work. Boston: Harvard Business School Press, 2001. Coleman JS, Social Capital in the Creation of Human Capital. The American Journal of Sociology 94: 95-120, 1988. Condeluci A, Cultural Shifting. St. Augustine: Training Resource Network, Inc., 2002. Condeluci A, Burke K, Gooden-Ledbetter M, Evans McGuirk MA, Ortman D, Together is Better: A guide to fostering community inclusion for individuals with disabilities. Pittsburgh: UCP Press, 2004. deTocqueville, A. (1883). Democracy in America. Edited by J.P. Mayer. Harper & Row, 1996. Halpern D. Social Capital. Malden, MA: Polity Press. (2005). Hanifan, L.J. (1916). “The Rural School Community Center.” Annuals of the American Academy of Politcal and Social Science. 67: 130-138. Leana CR, Pil FK, Social Capital and Organizational Performance: Evidence from Urban Public Schools. Organization Science 17(3): 353-366, 2006. National Council on Disability, National Disability Policy: A Progress Review. October, 1997. The National Organization on Disability, 2004 N.O.D./Harris Survey of Americans with Disabilities, http://www.nod.org/Resources/harris2004/harris2004_summ.pdf (accessed 2007). Putnam R, Tuning In, Turning Out: The Strange Disappearance of Social Capital in America. PS: Political Science and Politics 28(4): 664-683, 1995. Putnam R, Bowling Alone. New York: Simon and Schuster, 2000.

About The Authors Dr. Al Condeluci has been an advocate and catalyst for building community capacities and understanding culture since 1970. Al received his Bachelors Degree in Psychology from Youngstown State University, his Masters in Social Work and Ph.D. in Education from the University of Pittsburgh. He is the CEO of UCP/CLASS of Pittsburgh. Since 1975 Al has emerged as a national leader and consultant on human services and community issues. He has written many books that have won praises and awards for their thoughtful approach to culture and community. Jeffrey Fromknecht graduated from Allegheny College in 2004 with a Bachelors of Science degree in Psychology and recently earned his Master’s of Social Work degree, studying Community Organizing and Social Administration, at the University of Pittsburgh, School of Social Work. Jeff is a Fellow with the University, Community, Leaders, and Individuals with Disabilities (UCLID) Center. Currently, Jeff works for UCP/CLASS of Pittsburgh in the UCP Kids division as a Community Partner. 14 BRAIN INJURY PROFESSIONAL

book review The New Worklife Expectancy Tables Gamboa, A.M. and Gibson, David S., Published by Vocational Econometrics, Inc., Louisville, KY, 2006. ISBN 1-886870-04-7 Worklife expectancy for a person after a brain injury usually results in a loss of income over that person’s lifetime and a modification or reduction in job level. Gamboa and Gibson in their book, The New Worklife Expectancy Tables (Vocational Econometrics, Inc., Louisville, KY), have provided vocational specialists, life care planners, attorneys, and other professionals with updated data and information on worklife expectancy based upon the most recent U.S. Census Bureau’s Current Population Survey (CPS) and the American Community Survey (ACS). The CPS data are specific to persons defined as severely work disabled, work disabled, and not severely work disabled. The ACS data are specific to persons with a cognitive disability. While cases of catastrophic brain injury often produces total loss of earning capacity, mild traumatic brain injury can also result in reduced residual functional capacity to perform work and earn money. The U.S. Census Bureau data provides professionals with both earning and employment data specific to persons having cognitive problems (i.e., learning, remembering, and concentrating) and problems that are work disabling. Each can be used in assessing earning ability for a person with Traumatic Brain Injury (TBI) who is either employed or clearly capable of employment. Gamboa and Gibson have developed also a software package entitled “Worklife Probability.” It accompanies the Worklife Probability Tables. It provides the user with a spreadsheet containing government probabilities of life and employment as used in their publication. In addition, it allows the user to perform a present value calculation on future expected earnings. For example, a year-round, full-time employed male with a baccalaureate degree who is not disabled earns at an average rate of $80,344 over his adult work years. In contrast, a year-round, full-time employed male with a baccalaureate degree identified as “having cognitive problems with learning, remembering, and concentrating” only earns at an average rate of $58,527 per year. Worklife expectancies specific to no disability and cognitive disability are reported out at 36.5 years and 26.4 years, respectively. Thus, when consideration is given to fringe benefits at a national average rate of 26%, the lifetime loss of expected earnings is $1.7 million. Gamboa’s and Gibson’s book and software will help professionals better understand the real impact of brain injury on a person’s worklife expectancy utilizing current government data. Through use of government data, jurors can better decide a fair and reasonable compensation for those with reduced capacity to perform work and earn money as a result of TBI. Ronald C. Savage, Ed.D.

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Brain Injury Services: Roads Not Taken Debra Braunling-McMorrow, PhD As a professional serving people with brain injury and their families for the past 25 years, I count myself among many providers who are continually challenged to uncover alternative, innovative, effective and efficient ways to meet the remarkably diverse and complex needs of individuals with brain injury. Along the way, I have been moved and frequently humbled by the realities that many people must face after having experienced a life-altering disability. The truth is that any one of us could be standing in those shoes, and I often remind myself of that fact. For the most part, brain injury is non-discriminatory and unanticipated. Most people believe that community inclusion is a basic human right and that when given a choice, human beings would prefer to live in or be part of a community. However, there is a dilemma embedded in the actualization of this outcome for individuals with disabilities. Put simply, many people do not have access to the necessary services and supports to live successfully in the community. For example, it has been estimated that only approximately 5% of individuals with severe brain injury have adequate funding for long-term treatment (BIAA, 2003). If this is accurate, then the other 95% are apparently left to rely on unfunded family support, public supports or no 16 BRAIN INJURY PROFESSIONAL

supports at all in the challenging years following a brain injury. While there have been remarkable efforts to influence commercial insurance payers and develop home and community-based Medicaid waiver programs intended to address these gaps, more often than not these programs are inadequately funded, narrow in scope, and implementation is a distant cry from what most would consider a “standard of care.” The intent of this article is to emphasize the importance of continuing to challenge ourselves as service providers and advocates to seek applicable, interesting, desirable and affordable community support options for people with brain injury as their needs change throughout their lives. Not only is this pursuit relevant to the 5,300,000 Americans currently living with a disability resulting from a brain injury and the 80,000 - 90,000 (Thurman, et.al., 1999) new persons diagnosed with permanent disability each year, but it is now relevant to the estimated 75,000 – 150,000 young servicemen and women returning from Iraq and Afghanistan with the “signature injury” of those wars (Glaser, 2007; ABC News, 2007). Over the past quarter-century, the proportion of the population with disability has risen markedly (Kaye, et al., 1996). While there has been an increased accuracy of reporting, this

can primarily be attributed to a demographic shift to an aging population and a greater number of children and young adults reported with disability. In addition, the proportion of the population needing personal assistance has increased in the 18- to 64-year-old population from 2% in the 1980s to 2.7% in 1990 and has continued to rise. Due to medical and trauma care advances, people are now surviving catastrophic injuries more frequently and are left to confront more severe disability. This dynamic is mirrored in the current Iraq and Afghanistan conflicts, where there is a high survival rate due to the rapid access to trauma care. Current population trends predict that the number of people over age 50 will grow by 74% between 2005 and 2020, while the number of people under 50 will grow by only 1%. If this trend continues, in order to sustain the current proportion of long-term care workers to people in need, the number of workers would need to more than double, from the current 1.9-million estimated workers to at least 4 million by 2050 (Friedland, 2004). While there could be fewer caregivers available in the future, there will also be fewer persons contributing to the Medicaid, Medicare and Social Security systems to support those requiring more assistance. In addition, there is a projected shortage in health care professionals. For example, the U.S. Department of Health & Human Services projects a supply and demand shortage for registered nurses with an estimated 800,000 open positions by 2020 (HRSA, 2002). Functional Impact of Brain Injury For the majority of persons with disability, the family provides the primary support function, whether by choice or necessity. It is estimated that 84% of these individuals live in their family homes (Thompson, 2004), where direct support is most often provided by an aging family member or a child who has given up his or her income to care for an aging parent. Though the 2005 U.S. Census survey reported only 16% of persons with disability living at the poverty level, this figure clearly underestimates those who would be considered impoverished if it were not for their family support and income (U.S. Census, 2005). According to the 2004 National Organization on Disability /Harris Survey of Americans with Disability, persons with disability were three times more likely to live at the poverty level, had less access to transportation and were more likely to go without needed health care. Only 35% reported being employed, and they were twice as likely to drop out of high school. These individuals were also less likely to socialize and reported a lower level of satisfaction in life in comparison to their non-disabled peers (Humphrey, 2004). If not dependent upon their family, underemployment or unemployment significantly limits living options for persons with disabilities, often restricting them to high crime neighborhoods (Curry, et.al., 2001). Individuals are also four to ten times more likely to be victims of violence, abuse, or neglect than persons without disability. Children are particularly vulnerable with an incident of physical or sexual abuse two times higher than their non-disabled peers (Petersilla, 2001). Promoting community inclusion of persons with disability and persons with brain injury, is an increasingly important economic and practical issue, where historically it has been a social and political advocacy issue. We can only anticipate that as the number of persons with brain injury and those with long-term

disability as a result of a brain injury increase, the resources to support these individuals will further shrink. Where do we go from here? An unfortunate realization I came to is that given the financial future of many persons with brain injury, I often need to figure out how to teach people to live at the poverty level or below. Many individuals in this situation are solely reliant on monthly Social Security checks with minimal opportunities to earn additional money. In part, my role includes establishing links to typical and atypical community supports such as utility assistance programs, food banks, thrift stores, and local church and civic group special needs projects. There is an increasing need to identify survival based and geographically dispersed supports for persons who return to their often rural homes. An interesting alternative that needs to be further explored is communal and shared living options where individuals may pool their resources or talents. The Accessible Space programs offer a unique living arrangement whereby persons pool their personal assistance to “cover” them as a small community, which allows for each resident to receive the level of support that best fits his needs. For example, a person may have benefits to cover 3-5 hours of personal assistance per week, yet what is needed is someone to check in 10–15 minutes each day. In addition, we have considered matching persons with complementary disabilities as roommates as a way to pool abilities. For example, a person with a physical disability may choose to live with a person with primary cognitive disability. This creates a symbiotic arrangement in which each individual is supported in areas of weakness and can compensate for the other with areas of strength. A model that has been at the root of the MENTOR Network’s service array since 1980 was designed to provide a lower cost community integrated alternative for many persons with developmental disabilities or mental illness residing in institutional settings. The Host Home Model provides an individually designed living arrangement with a person or a family and a person with disability. In general, the Host Home provides social links, daily and weekly supports, and inclusion into a “family” with the support of a Service Coordinator for training and assistance. This model has been expanded successfully for some persons with brain injury and may be particularly suitable for children or adolescents who may not have a family with whom they can live. In addition to alternative living arrangements, assistive technology, especially those generic or easily accessible devices, may often provide cheap and least intrusive solutions for some to continue to live with minimal support. Use of personal pocket computers (Gillette and DePompei, 2004), regulators to control lights, computers, answer phones, beeping watches or other “minder” systems may mean the difference for many between accessing community housing or bumping into institutional care. In a study on technology and persons with disability, only half (26.7%) of persons with disability accessed internet services in comparison to their non-disabled peers (RTC, 2006)). In addition, the 2004 National Organization on Disability /Harris Survey of Americans with Disability reported Americans with disabilities rely upon assistive technology, with a third indicating they would lose their independence without it (Humphrey, 2004). Unfortunately, the development of low BRAIN INJURY PROFESSIONAL

cost, accessible, user-friendly assistive technology has outpaced our ability to pay for these supports. Many times a person may get what is paid for as opposed to what is needed. While hourly benefits for physical therapy and occupational therapy may be provided in an individual’s policy, what may be more important is a 15-minute daily follow-up or a wristwatch to remind her of medication times. Conclusion As advocates and providers of services to persons with brain injury we are obligated to continually explore alternative, innovative, effective, and efficient ways to support a growing number of persons with disability in their communities. It is likely that the public will remain the largest provider of supports, and as the demographics of persons with disability change, that will determine how the resource “pie” is divided. There will be an increased need for geographically dispersed, survival-based supports provided by multi-talented providers to meet the diverse needs of this population.

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References:

ABC News. Bob Woodruff Reports. Available at http://www.abcnews.go.com/wnt/woodruffreports/ storysid+2908676&page=1. Accessed March 27, 2007. Curry, M., Hassouneh-Phillips, D., & Johnston-Silverberg, A. (2001). Abuse of women with disabilities: an ecological model and review. Violence Against Women, 7(1): 60 – 79. Friedland, R. (2004). Caregivers and long-term care needs in the 21st century: Will public policy meet the challenge? Issue Brief, Caregivers and long-term care needs: Will public policy meet the challenge?, (Washington, DC: Georgetown University Financing Long-Term Care Project, July 2004). Gillette Y, DePompei R: The Potential of Electronic Organizers as a Tool in the Cognitive Rehabilitation of Young People. NeuroRehabilitation, 19(3), 233, 2004. Glaser, R. (2007) A shock wave of brain injuries. The Washington Post. April 8, 2007: B1, B5. Humphrey, T. (2004). 2004 National Organization on Disability/Harris Survey of Americans with Disability. Kaye, S., LaPlante, M., Carlson, D., & Wenger, B. (1996). Trends in disability rates in the United States, 1970-1994. National Institute on Disability and Rehabilitation Research, Washington, D.C. Petersilia, J.R. (2001) Crime victims with developmental disabilities: a review essay. Criminal Justice & Behavior, 28 (6): 655-694. Projected Supply, Demand, and shortages of registered nurses: 2000-2020 (2002). U.S. Department of Health and Human Services. Available at http://bhpr.hrsa.gov/healthworkforce/rnproject. Research and Training Center on Disabilities in Rural Communities (2006), Disability and the digital divide: Comparing surveys with disability data. Available at http://rtc.ruralinstitute.umt. edu/TelCom/Divide.htm. Thompson, L. (2004). Long-term care: Support for family caregivers, Issue Brief (Washington, DC: Georgetown University Financing Long-Term Care Project, 2004). Thurman, D., Alverson, C., Dunn, K., Guerrero, J., Sniezek, J. (1999). Traumatic brain injury in the United States: a public health perspective. Journal of Head Trauma Rehabilitation, 14 (6), 602 – 615. U.S. Census Bureau, 2005 American Community Survey. Available at http://factfinder.census.gov/ servlet.

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 has served on numerous national boards and currently serves on the North American Brain Injury Society board of directors. Dr. McMorrow is a Licensed Clinical Psychologist and a CARF Medical Rehabilitation surveyer.

For Adults with Cognitive Disabilities

Acknowledgement

This article is based on observations of the Traumatic Brain Injury Technical Assistance Center’s (TBI TAC) work with the States. Special thanks to the TBI TAC Technical Assistance and Knowledge Exchange Team members for their leadership, comments, and edits. 18 BRAIN INJURY PROFESSIONAL

David Seaton, Owner/CEO • ds@tc-tx.com • 512.371.1078 P.O. Box 1410 • Manchaca, Texas 78652

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The Path to Possible Selves: Restoring Hope in Individuals with Traumatic Brain Injury John Sassin, PhD. (ABD), CRC

Hope. It’s a small, unassuming word, but its meaning in the life of a person with Traumatic Brain Injury (TBI) can be powerful beyond measure. I have seen this time and time again in my practice, and have learned that one of the most important things I can do as a counselor is to introduce and instill the idea of hope as a power resource (Miller, 2000). Hope is the anticipation that our actions will have a positive consequence; it is an intrinsic component of life that provides dynamism for spirit (Adams & Proulx, 1975; Miller, 2000), saving people from apathetic inaction. Likewise, I recognized long ago the importance of the working alliance (Koch & Rumrill, 2005), which in itself can create hope that through our relationship and interaction, together we can achieve a positive outcome. And in the world of vocational rehabilitation, the concept of hope is key to accomplishing goals and success in obtaining employment. Individuals who have developed realistic goals and who have the motivation and a plan of action to pursue and eventually reach those goals can develop a vision of their Possible Selves (Markus & Nurius, 1986). The idea of Possible Selves includes the hoped-for self as well as the feared self; it is the vision of the positive, hoped-for selves that make up the cognitive component of hope that gives it form, meaning and direction. In this article I will examine the importance of hope in the working alliance and explore the concept of Possible Selves and its relationship to goal achievement in individuals with TBI, specifically when it comes to career success.

positive outcome or at least, movement towards one, a person can feel loss of ownership in the process. J.F. Miller (2000) describes the importance of the relationship of significant others and the belief that when there is a possibility of a positive outcome each party shares a willingness to “share the crisis,” and hope is enlivened. Therefore, hope motivates each stakeholder to clearly develop their role in accomplishment of goals thus forging the establishment of the working alliance. Hope is the bridge that connects thought and action: it is the ultimate motivator in times of despair. According to Miller (2000), hope exists on three levels, and it is the third, intensely powerful level of hope that individuals need to realize their Possible Selves. A superficial optimism or hope without action cannot be sustained when depression and low self-esteem become entrenched. But through the working alliance formed between the rehabilitation counselor and the person seeking employment, concepts are transcended and goals are actualized by a series of practical assignments. The individual’s progress is reviewed to reinforce that the actions taken are moving him forward. Once he recognizes that he has the power to change his existence, the reality of a future in which he can live as his hoped-for self seems attainable.

Defining Hope

Possible Selves are defined by the individual. Many of the titles are shaped by previous social expectations and experiences. Thus, an individual is free to create a pool of possible selves that are derived both from past experiences and from the hope for potential happiness or fulfillment in the future. Many times rehabilitation professionals are focused on the didactic outcome of “employment,” and we tend to use a standardized or a fixed approach. While standardized approaches are important, they can be limited. Realistic appraisal of hope and goal setting can lead to a novel approach to life after a TBI and

When describing hope in my practice I like to use both a spiritual and operational definition. I believe spiritually that hope is a result of faith and that it motivates one to act with the belief that there will be a positive outcome through optimism and perseverance. I also ascribe to Stanley’s (1978) seven common elements of hope: (1) expectation of a significant future outcome, (2) feeling of confidence in the outcome, (3) transcendence, (4) interpersonal relatedness, (5) a comfortable feeling, and (7) action to affect outcomes. Without an expectation of a 20 BRAIN INJURY PROFESSIONAL

The Path to Possible Selves

“I am a person with a brain injury who is unemployed and struggling a bit but I can be employed as an artist or a hospitality worker; I can be happy again.”

can be a powerful intervention. Restoring hope gives control back to the individual, where it belongs, thereby allowing for the creation of a Possible Selves. The working alliance then becomes a source of empowerment and a real skill-building interaction in which the person thinks, “My therapist wants me to succeed; her concern for me is genuine.” This process is far stronger in delivering hope than “getting someone a job.” While I have found working to restore hope a challenge at times, it is incredibly worthwhile when I am able to get an individual to explore his current experience, imagine the possibilities offered by the future, and find that hope, deep inside himself, links the two. Reminding an individual with TBI that each day brings another opportunity may be a little nebulous, but encouraging her to savor a warm sunny day is not, especially after being in the hospital. I gently emphasize the importance of having just one encounter with another human being because it will be something that can be built upon to frame future interactions. By simply taking charge and planning out one’s day, an individual can cast apathy aside temporarily, which lessens the risk of ever being consumed by it. Even the act of being on time to an appointment is a step in the right direction. It is recognizing each and every experience as a learning opportunity to build upon and to savor that is the embodiment of hope and the path to the creation of Possible Selves. Conclusion

The working alliances I form in my practice—those that value each stakeholder as a person first—are anchored by hope. Hope can be a cognitive exercise to reframe and shape thoughts and actions. Helping an individual learn to focus on the positive is a powerful tool to give to someone who has experienced life challenges after trauma. In hope lies possibility. It rewards and gauges success. It can mean the difference between a person who lives in despair and apathy and a person who views the future with excitement and determination. From this state of mind, the idea of Possible Selves can take shape and allow individuals with traumatic brain injury to see themselves as relevant and capable people. When we as counselors can instill hope, we give a person the power and control to recreate his life in a positive and meaningful way. What a powerfully simple intervention. Reference:

Adams C, Proulx J: The role of the nurse in the maintenance and restoration of hope. In Bereavement: Its Psychosocial Aspects. B Scheonberg et al. (Eds.) Columbia University Press, New York, NY. Pages 256-263, 1975. Koch LC, Rumrill PD: Interpersonal communication skills for case managers. In Case Management for Rehabilitation Health Professionals, 2nd edition, Vol. 1. F Chan, M Leahy, JL Saunders (Eds.), Aspen Professional Services, Linn Creek, MO. Pages 122-144, 2005. Markus H, Nurius P, Possible selves. American Psychologist, 41: 954-968, 1986. Miller JF: Coping with Chronic Illness; Overcoming Powerlessness. Philadelphia, PA: Davis Company, 2000. Stanley AT, The lived experience of hope: The isolation of descriptive elements common to the experience of hope in healthy young adults. Unpublished doctorial dissertation. Catholic University, Washington, DC, 1978.

Biography

John Sassin, PhD. (ABD), CRC, is the Undergraduate Rehabilitation Service Coordinator at Langston University. He is currently the CEO of Sassin & Associates, and co-owner of Comprehensive Community Rehabilitation Services, a long-term brain injury program in Tulsa, OK. His background is in rehabilitation counseling and community living, specializing in people with brain injury and other cognitive impairments for the past 25 years.

Lifelong Living Revisited

Harvey E. Jacobs, Ph.D. In 1990 several colleagues and I published a special issue of the Journal of Head Trauma Rehabilitation on the topic of Lifelong Living. The issue’s title caused some furrowed eyebrows among those who felt that the title was redundant. Some asked “Isn’t living lifelong?” and equally, “What else do you do throughout your life but live?” Some suggested that we title the issue “Lifelong Care” or “Living with a Traumatic Brain Injury.” Others presumed that the issue would cover transitional living settings and other forms of professionally directed care. At that point in time, there was a better funded and more institutionally focused continuum of care for people who experienced disability following a traumatic brain injury. People remained in inpatient rehabilitation for months at a time. Many then moved on to equally long outpatient or transitional living services. There was little on the horizon to suggest that methods of service delivery and funding would radically change. However, the focus of the issue was not on service delivery mechanisms but on recognizing each person over their brain injury. As noted in the opening page of the lead article [1], What Is Lifelong Living and How Does It Relate to Quality Of Life?: Lifelong living addresses the challenges that persons who have experienced a traumatic brain injury face after formal rehabilitation has ended, a stable discharge environment has been established and it is “time to get on with living.” It is a time when a person is again recognized for their overall make-up and character, rather than for one catastrophic event; when the “brain injured patient” is replaced by the “person who experienced a brain injury.” While we may continue to acknowledge the significant residuals that may remain after the accident, we also begin to recognize the individual as a “whole,” albeit dif22 BRAIN INJURY PROFESSIONAL

ferent person again. A brain injury changes a life, but over the long term it must not define the life. We believed that how many people viewed brain injury too often robbed individuals of their integrity and identities. Common parlance was to talk about “life after brain injury” and “life before brain injury,” as if these lives were separate entities. There was no doubt that for many, things substantially changed as a result of their injury, but too often we discarded salient histories, interests, abilities, resources, circles of support and other aspects of the person – becoming overwhelmed by the injury itself; as if it defined the whole person. We noted that is was critical to recognize the unique nature of each person as well as personal empowerment. We promoted transcending empowerment to establish personal rights and responsibilities. At the time, empowerment [2] could signify other people giving permission for individuals to assert their rights. We felt that such rights were implicit without the permission of others. Still, empowerment programs have helped many realize their own personal authority. Each lifelong living program is personal and unique, according to the abilities and resources of the specific individual. Consumer control of programs, within individual abilities, helps to assure personal responsibility and self-determination. We emphasized least restrictive programming in community inclusive environments, but noted that what worked for one person, would not necessarily work for another. Additionally, the long-term nature of supports inherent in lifelong living programs would challenge existing funding mechanisms and then current concepts of treatment.

Residential placement is not synonymous with lifelong living. Many of the supports required in lifelong living can be developed from existing community services with specialized programs used as necessary. Because of the long- term nature of most programs, funding can be a formidable challenge and a number of approaches are being investigated to moderate direct costs. The ultimate success of lifelong living programming is measured by the lack of institutionalization that it “suffers” over time and how such programming helps the individual improve the control and quality of their life. In fact, the efficacy of lifelong living hinged on who controlled goals, services, resources, and interventions. Under then common treatment systems, most of these issues were directed by outside agents such as physicians and therapists towards the benefit of the individual with the brain injury. Lifelong living concepts completely reversed this locus of control to the individual and when necessary, those most closely involved with him or her. We noted that treatment systems were invaluable in early stages of recovery, but that there were limitations of such systems and the need for alternative approaches over time. Our hope focused on a greater emphasis on community as compared to institutional supports, with resources following each consumer. What we suggested may have been novel to many readers of the special issue, but had strong roots among other groups of people who experienced disability due to other impairments. The independent living center movement was already well established, principally by people who experienced disability due to physical impairments such as spinal cord injury. Concepts of positive behavioral supports were increasingly recognized for people with developmental disabilities. Community-based services for people who experienced disability due to chronic mental illness had reported mixed results, mainly due to institutional, political and funding hurdles for over a decade. However, promising programs such as Fountain House had established the positive results of consumer centered and community-based supports. These were not programs and services directed towards consumers in the community, but programs, services and resources directed by consumers. In true consumer-centered fashion, rather than being a third party to discussions and deliberations about them around the treatment table, people were becoming the President and CEO of their lives once again; with all privileges and all responsibilities. Dramatic changes in funding, beginning in the early 1990s, increased attention to concepts of lifelong living. Dramatic reductions in medical insurance coverage for brain injury rehabilitation resulted in more people being discharged from treatment programs earlier, with greater levels of handicap and fewer supports. Much like the deinstitutionalization movements in many state mental health systems in the 1970s and 1980s, the promise of community supports failed to adequately materialize. Unlike many people who experienced chronic disability due to mental health impairments, who had no one to turn to and became homeless, many people who experienced disability following brain injury still had some levels of family support. Going back to the future, family members found themselves assuming significant burdens and responsibilities that they were just as unequipped to handle as families were in

the late 1970s and early 1980s. The past 15 years has seen further assaults on programmatic and financial resources to help people succeed following brain injury. Medical treatment services continue to be reduced and uncoupled so that therapists from different disciplines have less opportunity to collaborate on treatment. Community-based programs and resources for the most part have also been under increasing fiscal pressure as our nation has focused its priorities on other issues. Homelessness and nursing home placements are on the rise. Despite these challenges, there have also been glimmers of hope. A number of states offer Medicaid waivers for persons who experience disability following brain injury. The lifechanging effects for many participants are truly heart warming, but the number of people served through such waivers is miniscule compared to the need. Today there are over 20 clubhouse programs in the United States operated by and for people who experience disability following brain injury, but again, hundreds more are needed, as well as other consumerdirected supports geared to the many diverse communities in our country. Supported employment and other venues to help people enter compensated employment have been widely accepted. More states and municipalities have publicly-funded, community-based case management systems seeking to find services for individual needs, but with so few community-based services, the waiting lists for each service overwhelm existing programs and resources. It is not unusual to find waiting lists closed to newcomers because of the sheer size of the list. For example, in one region of Virginia, there are over 8,000 people on a now-closed waiting list for several hundred units of lowcost housing. Unfortunately, this is not the exception. Because of a lack of universal supports, individual supports to lifelong living remain much more expensive and available to only a “fortunate few.” The Brain Injury Association of America still estimates that at least 95% of all people who experience disability following brain injury fail to get the services and supports that they need. Living in the community, whether it be in a family member’s home, an assistive living center, under an overpass, or a nursing home is far different from having a life in one’s community and the latter still eludes far too many. A major part of this solution is political. We know how to do this work, and the cost per individual decreases dramatically as we expand to the masses. Let’s work to assure that “community supports” and “consumer direction” become venues for personal integrity and accomplishment instead of euphemisms for “doing more with less” and personal opportunity denied. References 1. 2.

Jacobs HE, Blatnick M, Sandhorst, J, What is lifelong living and how does it relate to quality of life? Journal of Head Trauma Rehabilitation 5: 1-8, 1990. Condeluci, A: Interdependence: The route to community. Winter Park, FL: St Lucie Press, 1995.

About the Author

Harvey Jacobs received his doctorate from Florida State University and has served on faculty at the Johns Hopkins University School of Medicine, UCLA, and Temple University, as well as working and consulting with numerous rehabilitation programs across the country. Currently in private practice, his current interests include behavioral rehabilitation for neurological, psychiatric, medical and developmental disorders; brain injury; rehabilitation outcomes research; and community integration across the life span. BRAIN INJURY PROFESSIONAL

BRAIN INJURY AND SOCIAL EXCLUSION: A NEW OPPORTUNITY FOR COMMUNITY ACTION

Lynn C. Todman, PhD and Sherrod Taylor, JD

As fans of Garrison Keillor know well, the ability to weave disparate threads into the fabric of a good story (e.g., “the news from Lake Wobegon”) constitutes high art. Although we do not seek artistic results here, we do strive to unite several seemingly unrelated concepts to propose a plan for community action that could improve the lives of individuals with brain injury and other people who are oppressed by debilitating social structures within American society. To accomplish this task, we shall discuss “belonging” and quality of life in light of the work of the psychologist Alfred Adler, explore the emerging concept known as “social exclusion,” and examine the mission of the Adler Institute of Social Exclusion. Most importantly, perhaps, we shall describe how people with brain injury may assist in combating social exclusion in the United States. ALFRED ADLER AND “BELONGING” According to Ann Hubbard (2004a), “belonging” is the major activity of life. In two major law review articles, Hubbard points out that psychologist Alfred Adler was among the first thinkers to fully comprehend the importance of belonging in human existence. Adler was persuaded that “all of our functions are calculated to bind the single individual to the community” and that human striving was animated by a “social feeling” or “social interest” that leads a person to seek cooperation within the community [1]. Confirming his belief in the “power of the sense of community,” Adler said: “It is important to instill in early life the idea of the community of mankind”; these strong feelings led him also to say: “Activity in the direction of the spirit of the community of mankind is, therefore, the triumphant commandment of human evolution” [2]. For this reason, Hubbard (2004b) observes, Adler maintained that the three principal aims of life centered upon pursuit of community, engagement in useful work, and finding romantic and family love. Encouraged by a “spirit of fellow feeling,” Adler discovered that life in the community anchors one’s sense of belonging in the world [3]. That sense of belonging increased when one’s useful work was also deemed to be “useful for society” [4]. Since these Adlerian themes (i.e., community, work, and love) have been discussed in the scholarly literature dealing with community integration, readers of Brain Injury Professional may already be familiar with Adler’s theories. McColl et al. (1998), for example, defined community integration for people with brain injury as consisting of “having something to do; some24 BRAIN INJURY PROFESSIONAL

where to live; and someone to love” [5]. Indeed, a strong sense of belonging has always been thought to contribute to one’s overall quality of life. People with disability, especially, tend to believe that belonging is important for personal well-being. At least one model for quality of life, called “Being, Belonging, and Becoming,” developed by Renwick and Brown (1996) places belonging in the center of life and uses belonging to refer to a sense of inclusion within a community [6]. As we shall soon see, this sense of inclusion within a community is very significant because “exclusion” from community destroys one’s sense of belonging and has a profoundly deleterious effect upon quality of life. In a recent review of Rights of Inclusion: Law and Identity in the Life Stories of Americans with Disabilities, a book by David M. Engel and Frank W. Munger, Berrey and Nielsen (2007) noted that one of those authors’ major insights was that people’s sense of self and sense of belonging are tied to perceptions of inclusion or exclusion in mainstream society [7]. Once a member of Freud’s Vienna Circle, Alfred Adler later developed the area of professional practice known as “individual psychology.” In 1937, Adler died while on a speaking tour in Scotland. His daughter, Dr. Alexandra Adler, completed the lecture series and later returned to the United States to help found the Alfred Adler Institute of New York. In 1952, Alfred Adler’s colleague, Rudolf Dreikurs, M.D., established the Alfred Adler Institute in Chicago, which is now known as the Adler School of Professional Psychology. Equality, civil rights, mutual respect, the advancement of democratic values, and the importance of nurturing feelings of belonging in everyone constitute core values shared by Alfred Adler and his students.

SOCIAL EXCLUSION

The term “social exclusion” refers to the processes through which certain individuals and communities of people are systematically blocked from access to the rights, opportunities, and resources (e.g., housing, employment, healthcare, civic engagement, democratic participation, and due process) that are normally available to members of the society in which they live and that are key to social integration. Specifically, “social exclusion” describes the injustice, deprivation, and disadvantage flowing from constraints imposed on people by various structural features of society. Those societal structures include, but are not limited to, the laws, regulations, public policies, institutional practices, organizational behaviors, and cultural values that un-

necessarily and inappropriately limit one’s full participation in the ordinary affairs of daily living. SOCIAL EXCLUSION AND BRAIN INJURY People with disabilities are among the most socially excluded members of society. [8]. In fact, the concept of social exclusion itself was initially “proposed in France to describe the exclusion of people with disabilities from full citizenship” [9]. Indeed, early in the history of the disability rights movement, activists expressed the view that it was society, not injury or illness, which disables people living with bodily impairments. Individuals with brain injury confront societal impediments on myriad levels. Like other human beings who are socially excluded – people of color, members of the lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) communities, and many women in the workplace – they generally are: unemployed or under-employed, relatively impoverished, subjected to stigmatization or discrimination, recipients of unequal healthcare, challenged while seeking adequate housing or satisfactory modes of transportation, or otherwise thwarted by imbedded societal structures when they seek to participate in mainstream life.

SHAPING NEW POLICY AGENDAS

Recognizing that a common identity exists among all individuals and groups who experience social exclusion in the United States sets the stage for potentially significant social change. If individuals with disability were to join people of color, women, and members of the LGBTQI communities in a common quest for social justice, people who are socially excluded would constitute a formidable force in American society that would be capable of raising a unified voice that could be heard loud and clear in the halls of Congress, the White House, and beyond. Due to a serendipitous array of converging circumstances, people with brain injury now have an unusual, if not unique, opportunity to contribute widely to the American conversation on social exclusion. Literally thousands of men and women are returning home every day, having served with our armed forces in Iraq and Afghanistan. Many of these soldiers have been seriously wounded and most importantly, brain injury has become the signature malady of the war on terror. After these soldiers recover from their acute injuries and undergo rehabilitation sponsored by Department of Defense and the Veterans Administration, most of these heroes will seek to re-enter mainstream American life. When many of these veterans discover that they will not be successful in that endeavor, scholars like Ann Hubbard (2006) believe that they may become motivated to form a “military-civilian coalition” to fight for disability rights [10]. We, the authors of this paper, fear that a substantial number of these returnees may, perhaps for the first time in their lives, go on to experience social exclusion. That is, they may unexpectedly encounter the structural barriers – especially the institutional prejudices, organizational attitudes, and cultural biases – that prevent their future full participation in normal society. If that occurs, these men and women will be able to fight against that exclusion in ways previously unavailable to any other group of people in American history. Not vulnerable to charges of having been responsible for causing their own exclusionary conditions and not subject to blame-the-victim arguments that customarily plague others who are excluded, these returning members of the military will

be empowered to speak out against exclusionary barriers of every kind. Imbued with a new sense of belonging to a community of activists, they will have an opportunity to engage in constructive social action at unprecedented levels. Their presence in future social exclusion conversations will underscore Condeluci’s observation that: “All people no matter the severity of the situation, have things to add, offer and contribute” [11]. ADLER INSTITUTE ON SOCIAL EXCLUSION Seeking to encourage new methods of cooperation and development of a strong sense of community among all people who are socially excluded, the Adler School created the Institute on Social Exclusion (ISE) in 2005. Today the ISE engages in active programs of applied research, public awareness, and community outreach designed to bring social exclusion into the American public policy conversation. Presently, this social justice think tank focuses its attention upon social structures that adversely influence human welfare. Aspiring to join and even lead returning veterans and other people who desire to tackle social exclusion on multiple levels, the Adler Institute on Social Exclusion now stands poised to become a major catalyst for positive social change in the United States. ABOUT THE AUTHORS

Lynn C. Todman, PhD is the Director of the Institute on Social Exclusion and a member of the core faculty at the Adler School of Professional Psychology in Chicago. A graduate of Wellesley College and the Massachusetts Institute of Technology (MIT), her professional interests focus on problems related to marginalization, disadvantage, and deprivation resulting from systems and structures that comprise and organize American society. Her recent research and writings explore the relevance of the concept of social exclusion to the American social policy context and the development of a transdisciplinary discourse on social exclusion. Sherrod Taylor, JD is Faculty Fellow at the Institute on Social Exclusion and also a member of the core faculty at the Adler School of Professional Psychology. After coining the term “neurolaw” in 1991, he served as editor-in-chief of The Neurolaw Letter for 10 years and authored the medicolegal treatise Neurolaw: Brain and Spinal Cord Injuries now published by Thomson/West. He is a member of the Editorial Advisory Board of Brain Injury Professional.

REFERENCES 1.

2. 3. 4. 5. 6.

7. 8. 9. 10. 11.

Hubbard A, The major life activity of belonging. Wake Forest Law Review. 39: 217-266, 2004a. Adler A, Mass psychology. International Journal of Individual Psychology. 2: 111-120, 1937. Hubbard A, Meaningful lives and major life activities. Alabama Law Review. 55: 997-1042, 2004b. Adler A, Individual psychology. Journal of Abnormal and Social Psychology. 22: 116-122, 1927. McColl M.A., Carlson P., Johnston J, et al. The definition of community integration: perspectives of people with brain injuries. Brain Injury. 12(1): 15-30, 1998. Renwick R and Brown I: The centre for health promotion conceptual approach to quality of life: Being, belonging, and becoming. In: Quality of Life in Health Promotion and Rehabilitation: Conceptual Approaches, Issues and Applications. R. Renwick, I. Brown & M. Nagler (Eds.) Sage, London. Pages 75-86,1996. Berrey E and Nielsen LB, Rights of Inclusion: Integrating identity at the bottom of the dispute pyramid. Law & Social Inquiry. 32(1): 233-260, 2007. O’Grady A, Pleasence P, Balmer NJ, et al. Disability, social exclusion and the consequential experience of justifiable problems. Disability & Society. 19: 259-271, 2004. Bynner J., Childhood risks and protective factors in social exclusion. Children & Society. 15: 285-301, 2001. Hubbard A, A military-civilian coalition for disability rights. Mississippi Law Review. 75: 975- 1006, 2006. Condeluci A: Interdependence: The Route to Community. Orlando: Paul M. Deutsch Press, 1991. BRAIN INJURY PROFESSIONAL

bip expert interview Dan Keating, Ph.D., Bancroft NeuroHealth What are the most serious challenges facing individuals with brain injuries today? The most serious challenge for survivors of acquired brain injuries is access to appropriate and necessary services. The long-term effects of acquired brain injuries vary from person to person and their needs vary along a broad continuum. However, wherever one falls on the spectrum, there are consistent access issues. Access is limited because of insufficient funding, insufficient trained professionals, and lack of sensitivity on the part of the general public. While immediate medical attention and care provide life-saving interventions, the follow-up services needed to completely integrate people who have survived brain injuries into society are often lacking. There is still not a full appreciation that the medical service delivery system is only one component of the array of services needed. Has much progress been made in brain injury services in the past 10 years? There has been significant progress in brain injury services over the past ten years. Dr. Kristjan Ragnarsson reported that since the 1998 NIH Consensus Conference on Traumatic Brain Injury Rehabilitation there has been “new knowledge in the epidemiology of TBI, the management of TBI and its secondary medical complications, rehabilitation of cognitive impairment, impact of TBI on community integration and quality of life, incidence of psychiatric dysfunction, and how caregivers and family members are affected. (“Traumatic Brain Injury Since the 1998 NIH Consensus Conference: Accomplishments and Unmet Goals”, J Head Trauma Rehabil, Vol.21, No. 5, pp. 379-387, 2006, Lippincott Williams & Wilkins, Inc.)” The Brain Injury Rehabilitation Model Systems program funded by the National Institute on Disability and Rehabilitation, within the U.S. Department of Education and other federally funded research programs have been a tremendous asset to providers of services for people with brain injuries. The Model Systems have generated and disseminated research that has looked at the needs of people with brain injuries and strategies to address those needs at all points on the severity continuum. What impact does “aging” have on people with brain injuries and their families? Everyone is familiar with the effects of aging in our society. People are living longer. This presents lifestyle challenges for everyone. These challenges are exacerbated for people with 26 BRAIN INJURY PROFESSIONAL

brain injuries. People with brain injuries often have physical issues like balance or gait dysfunction, spasticity, ataxia and the like which may worsen as they get older. Cognitive issues like memory loss, slow learning and diminished executive functioning are also magnified. We have begun to experience more sharply the effects of aging. People with brain injuries are experiencing physical deterioration seemingly earlier than their non-injured peers and there is some evidence that they may also be experiencing earlier dementia. The burden of care for aging caregivers is another issue that requires attention. While many resources are available at the outset of the rehabilitation process, there are few resources available at the back end of the process. More adequate realistic lifestyle planning is required to address the needs at the back end. How has funding, or lack thereof, impacted brain injury programs? As I indicated above, funding, or lack thereof, has had a significant impact upon the accessibility of services for people with brain injuries. With no funding, access to necessary and appropriate services is denied. People are left to manage on their own. They are often socially isolated. The mental health effects of this are great. People with brain injuries who feel helpless may become depressed, exhibit low self-esteem, and resort to drugs for comfort or escape. They may also be heavily dependent upon their family or other caregivers. The burden on the support system takes a heavy toll on those providing the care. Additionally, people with brain injuries who could be active, productive citizens with the appropriate resources are instead using valuable resources necessary to sustain them in less than ideal situations. What do professionals need to know about lifelong challenges for people with brain injuries? Consistent with the World Health Organization’s International Classification of Function, people with brain injuries want improved function so that they can be active participants in society. As much as we focus on physical functioning, we need to focus on how we can provide interventions to increase activities of the person’s own choosing in the interest of their being fully participative in society, again as they choose. Person Centered Planning truly focused upon what the individual with a brain injury wants needs to be the basis upon which services are provided. We often look at what an individual with a brain injury can’t do. We need to change our focus to what they can do and what supports they require to do it. We need to encourage the individuals who seek our services to dream

and explore what they want to accomplish and then set about creating plans to help them realize their aspirations. What service components need to be part of every program serving people long term? Every program serving people with brain injuries long-term needs a program evaluation strategy based upon goals designed to increase the persons with brain injuries’ integration into the community and their well being. Goals in individual plans should reflect the person’s wants and desires, and the program should evaluate how well it meets those needs and wants. Service providers need to identify creative strategies to allow participants in their programs to explore new vocational, educational, recreational and technological activities and reinforce new learning. The concept of “dignity of risk” needs to be applied. Dignity of Risk reflects a commitment to each person’s right to control his or her destiny and fully experience life, both the good and the bad. The service provider’s challenge is to manage risk, not avoid it. The degree of risk is determined by weighing the dangers in the environment, individual skills, experiences, and supports. Skills, experience and supports can lessen the amount of risk present in a given situation. We tend to be protective rather than inquisitive. Rather than stay within the limits of the known we need to explore the regions outside those limits. What is important for the government to address to best serve members of the military returning from Iraq and Afghanistan with acquired brain injuries?

The needs of members of the military returning with brain injuries from service in combat zones have brought a great deal of attention to brain injury in general. This is good for the returning service members. It is also good for the thousands of people with brain injuries who have been in need of attention to their plight for decades. The government needs to realize that there are many services available in the private sector that have been dealing with the issues just now becoming apparent to them for a long time. The government should look to partner with community providers that are located within the communities of service members with needs. They can draw upon the experiences of people with brain injuries and service providers who are familiar with the local scene to enhance community integration. About Daniel J. Keating, PhD

Dr. Keating, Executive Vice President of Life Span Services at Bancroft NeuroHealth in New Jersey is responsible for the organization’s Community-Based Residential, Clinical, Day-Treatment and Vocational Programs for adults with brain injuries and developmental disabilities. He has held several positions in organizations that provide acute, post-acute and longterm rehabilitation programs with people with brain injuries over the past 25 years. He has been an active advocate for people with brain injuries and has provided educational seminars and workshops at many local, regional, and national forums. He is currently an adjunct professor of psychology at Drexel University. He is an active member of the Brain Injury Associations of New Jersey and Delaware and was a Founding Member of the Board of the American Academy for the Certification of Brain Injury Specialists (AACBIS). He is also a member of the American Congress of Rehabilitation Medicine and the Brain Injury Interdisciplinary Special Interest Group.

BRAIN INJURY PROFESSIONAL

In Search of Eden: Deinstitutionalizing Long-Term Living Environments

Sandy Ransom and Greg Walton

The practice of providing long-term care for individuals with traumatic brain injury and other cognitive impairments is undergoing a significant change – a Culture Change. The institutional model predominant in most nursing homes, assisted living facilities, psychiatric, and long-term living programs is being challenged by a holistic philosophy of care that views these environments as habitats for human beings rather than facilities for the frail or disabled. At the forefront of this Culture Change movement is Eden Alternative® (www.EdenAlt. org), which emphasizes person-directed supports and individual autonomy to the greatest extent possible, personal relationships and connectedness between individuals, the inclusion of naturalistic elements such as plants, animals and children in the living environment. In addition, Eden addresses the business operations such as collaborative organizational decisionmaking and responsibility (Fox 2007). Seeking to create a more humanistic paradigm, Eden Alternative offers a tangible set of values and practices to help organizations move away from the medical/treatment system of supports towards a more sustainable model of healthy long-term living. The Eden Alternative is the brainchild of Dr. William Thomas, a Harvard educated geriatrician, who realized that the bulk of suffering in nursing homes occurred not because of medical or physical problems, but as result the social plagues of loneliness, helplessness, and boredom. In 1991, he received a grant from the New York Department of Health to conduct a 3-year pilot project to study the effects of creating an environment that incorporated plants, animals, and children into the daily lives of those living in a rural New York nursing home. Additionally, he altered the management hierarchy by empowering those workers closest to the clients, the hands-on caregivers. Outcomes of that initial study included fewer medications given, lower staff turnover, decreased infection rates, and a lower mortality rate. The newly formed Texas Long Term Care Institute then performed a larger study to determine if Dr. Thomas’s results were replicable. The results of the “Texas Study” revealed additional significant outcomes including a 60% decrease in behavioral incidents, a 57% decrease in decubitus ulcer formation, 28 BRAIN INJURY PROFESSIONAL

a 48% decrease in staff absenteeism, and an 11% decrease in employee injuries. Dr. Thomas’ Eden philosophy is based on ten Principles. These principles rest on the premise that, given the proper environmental stimuli, the client is capable of continued personal growth and development, despite specific medical, cognitive or emotional limitations. Eden Alternative Principles 1. The three plagues of loneliness, helplessness and boredom account for the bulk of suffering among people in care. 2. A Person-centered community commits to creating a Human Habitat where life revolves around close and continuing contact with plants, animals and children. It is these relationships that provide a pathway to a life worth living. 3. Loving companionship is the antidote to loneliness. People deserve easy access to human and animal companionship. 4. A Person-centered community creates opportunity to give as well as receive care. This is the antidote to helplessness. 5. A Person-centered community imbues daily life with variety and spontaneity by creating an environment in which unexpected and unpredictable interactions and happenings can take place. This is the antidote to boredom. 6. Meaningless activity corrodes the human spirit. The opportunity to do things that we find meaningful is essential to human health. 7. Medical treatment should be the servant of genuine human caring, never its master. 8. A Person-centered community honors its People by deemphasizing top-down bureaucratic authority, seeking instead to place the maximum possible decision-making authority into the hands of the People or into the hands of those closest to them. 9. Creating a Person-centered community is a never-end-

ing process. Human growth must never be separated from human life. 10. Wise leadership is the lifeblood of any struggle against the three plagues. For it, there can be no substitute. While recognizing that persons requiring care have medical needs and may have physical and cognitive limitations, the overarching thrust of the Eden Alternative and other culture change philosophies is to enhance the total well-being of persons entrusted to care. Eden advocates believe one means to this end is to motivate and empower Direct Support staff in such a way that it positively impacts those whom they serve. Ultimately, at the heart of the Eden Alternative mission is the desire to create an environment and introduce a broad range of experiences that will give meaning to the life of each and every individual. Culture Change Case Study: RidgeOak Living Program Many long-term care organizations have embraced the Eden philosophy. Organizations adopting the Eden principles have the potential to produce dramatic positive results, but such farreaching changes will be met with resistance, as well as enthusiasm. For these organizational changes to take hold permanently, they must be made incrementally. A notable example is the RidgeOak Living Program in Austin, Texas. This long -term living facility serves adults with cognitive/behavioral challenges. In January of 2006, RidgeOak embarked on its own Culture Change, by incorporating the Eden Alternative philosophy and approach. A number of gradual changes, building one upon another, were made to the physical plant, organizational structure and operating practices, resulting in significant changes over the course of 18 months: Activities:  The array of activities, classes, outings and community opportunities available to residents was gradually but significantly expanded. On-site classes, such as cooking, landscaping, gardening, flower arranging, vehicle maintenance and computer, were added to the program offerings. A bowling club was formed, and vacations with residents were initiated.  Live-in cats were introduced, enabling residents to enjoy the companionship of a pet and also to assume the responsibility for the care of these animals.  Volunteer opportunities were made available to residents, giving them a sense of connectedness and an opportunity to contribute to the community. Placements were established at the local animal shelter, Meals on Wheels program and church-sponsored childcare centers. Environment:  The physical site was modified to be more inviting and more interactive, with the addition of tree-lined walking trails, outdoor benches, vegetable gardens and flower beds, a fire circle and a Frisbee golf course. Rooms were painted in colors other than the typical institutional white and plants were placed throughout the interior. Resident photos were hung and buildings were renamed with less institutional-sounding names.  A significant effort was made to enhance the sense of community and interconnectedness among and between employees and residents. Residents were included in employee

interviews. Personal employee accomplishments and milestones, such as promotions, weddings and births were celebrated by the larger group, enhancing the social capital and cohesiveness of the group. A quarterly newsletter was created and sent to families and funding sources, recognizing resident accomplishments, program changes and the adoption of the Eden philosophy.  Resident input was sought to a much greater degree for decisions large and small, including menu planning and meal preparation, activity choices, and animal adoption Staff:  A gradual shift was made toward the diffusion of authority and responsibility among employees at all levels in the organization. Overnight staff was given the authority to selfschedule. Shift supervisors were designated and empowered to make important decisions about day-to-day operations.  Specific training was provided to all employees on the adoption of non-institutional terminology and values, nonconfrontational behavior management, supportive problem solving, conflict management, and eventually on Eden principles and practices.  After a serious examination of the facility’s myriad rules and more restrictive practices, many of the undignified and institutional customs were eventually abandoned in favor of more flexible, realistic and resident-initiated approaches. These changes have transformed what was once a rather unremarkable small program into a vibrant, spontaneous and joyful environment for employees and residents alike. The elimination of many restrictive rules, practices and policies has created more time for individuals to interact with one another, pursue individual and collective interests, and to build a stronger sense of community. Employee absenteeism and turnover are significantly reduced, dependence on psychoactive medication has been reduced, and residents report a significantly greater degree of personal satisfaction and fulfillment. Families are universally pleased by the changes in their family member, and employees report greater personal and employment satisfaction. References

Fox N. Leadership Pathways to Culture Change in Long Term Care. Wimberley, TX: Eden Press 2007. Ransom S: Eden Alternative: the Texas Project. Texas Long Term Care Institute. IQILITHC Series Report 2000-4, 2000. Thomas W: Life Worth Living – How Someone You Love Can Still Enjoy Life in a Nursing Home. Acton, MA: VanderWyk & Burnham, 1999. Thomas, W: Learning from Hannah – Secrets for a Life Worth Living. Acton, MA; VanderWyk & Burnham, 1999. Thomas, WH: What are Old People For? How Elders Will Save the World. Acton, MA; VanderWyk & Burnham, 2004.

About The Authors

Sandy Ransom, RN, MSHP, is the Director of the Texas Long Term Care Institute at Texas State University at San Marcos and has been involved in long-term health care since 1971. As a respected speaker and expert on innovations in nursing home care, she has published in numerous professional journals and has been invited to speak on the topic to groups throughout the country. She currently serves as the Vice President of the Eden Alternative Board of Directors Greg Walton M.Ed. serves as Director of the RidgeOak Living Programs, for adults with long-term cognitive disabilities in Austin Texas. Mr. Walton has worked in the field of long-term living and brain injury rehabilitation for thirty years and is a Certified Brain Injury Specialist and a certified Eden Associate. BRAIN INJURY PROFESSIONAL

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non-profit news Brain Injury Association of America Big News: the Brain Injury Association of America has moved its office! Our phone, fax, website and email remain the same but the new mailing address is 1608 Spring Hill Road, Suite 110, Vienna, VA 22182. Amidst the move and Washington’s sweltering summer heat, BIAA managed several other noteworthy accomplishments. In July, the Senate passed “wounded warrior” legislation, containing important brain injury provisions recommended by BIAA’s ad hoc Federal Legislative Advisory Committee. The legislative package, drawn from bills S. 1606, S. 1233 and S. 1349, promises comprehensive diagnosis and treatment for service members and veterans who sustain brain injuries, ensures access to non-governmental facilities to meet rehabilitation goals and includes several other measures relating to collaborative research. BIP readers can follow veterans legislation, as well as developments on the TBI Act, TBI Model Systems funding and other issues by signing up for BIAA’s electronic newsletter, Policy Corner, at http://capwiz.com/bia/mlm/signup/ Earlier this year, BIAA staff and volunteers were pleased to pitch another story to Wall Street Journal reporter Tom Burton—this one on Don Stein’s remarkable research. Mr. Burton will be a keynote speaker at BIAA’s upcoming Brain Injury Business Practices College, taking place November 5-7, 2007 at the Westin in Las Vegas. Watch our website, www.biausa.org, for details on the Business College and for announcements about upcoming conferences for state affiliates, attorneys and caregivers. Also coming soon to BIAA’s website is a comprehensive, searchable national directory of rehabilitation providers and other professionals in brain injury. BIAA will continue to print this “must-have” resource, but we are also making the information available to consumers in a 24/7 on-demand format. In the meantime, BIAA’s quarterly newsletter, THE Challenge!, recently got a makeover. The summer issue featured a compilation of Model Systems research on outcomes, updates on the assistive technology collaboration and a tribute to Mitch Rosenthal. The newsletter, which can be downloaded from BIAA’s website, includes an editorial on the challenges our field faces in research, treatment, awareness and advocacy. The article was written with input from ACRM, BIAA, NABIS and NASHIA members and is worth the read. The fall edition of THE Challenge! focuses on marriage and family relationships and is a fitting tribute to Randy Evans, whose death shocked and saddened our field and left a hole in our hearts.

Brain Trauma Foundation Following the release of our new learning portal, BTF has overhauled and redesigned the organization’s primary site at www.braintrauma.org. The new site offers more than just a new look. Users can now learn in greater detail about BTF, its research, methods, publications and implementation efforts. In addition, users can

32 BRAIN INJURY PROFESSIONAL

register to receive our newsletter, BrainWaves, and other updates via email and make purchases in the brand new, easy to use online store. The new 3rd Edition of the Guidelines for the Management of Severe Traumatic Brain Injury is now available for download or purchase through the site, along with other BTF guidelines and educational materials. BTF’s educational efforts continue on our learning portal at www.btflearning.org, where health care professionals are able to take online courses and enroll in our Lunchtime Lectures. Continuing Education credits are available for participating nurses, physicians, and EMS providers upon completion of an evaluation and post-test. Upcoming lectures in the series include: •

• • • •

September: Hypertonic Saline and its Use in Neurocritical Care Patients by Roger Hartl, M.D., Assistant Professor of Neurological Surgery, Weill Cornell Medical College, New York Presbyterian Hospital and Christian Wess, M.D., Fellow Neurotrauma and Critical Care, Weill Cornell Medical College; October: Brain O2 Monitoring by Peter Le Roux, MD, FACS, Associate Professor, Department of Neurosurgery, University of Pennsylvania; November: Prehospital Treatment of Pediatric TBI by Halim Hennes, MD, Professor of Pediatrics & Emergency Medicine, Medical College of Wisconsin; December: Resuscitation End Points in Adults by Samir Fakhry, MD, Trauma Surgeon, Inova Fairfax Hospital, Virginia; and January: Brain Tissue Oxygen Monitoring by Mary Kay Bader, MSN, RN, Neuroscience Clinical Nurse Specialist, Mission Hospital and Regional Medical Center, Mission Viejo, California.

International Brain Injury Association The International Brain Injury Association continues to make progress in the planning of the Seventh World Congress on Brain Injury, scheduled for April 9-12, 2008. We were delighted and honored to recently receive an official endorsement from the Ministry of Health of the Portuguese Government. This endorsement, which comes with a substantial monetary grant, recognizes the high level of scientific content and educational importance of this meeting. The Portuguese Ministry of Health joins the following organizations who have also endorsed the Congress: • • • • • • •

European Brain Injury Society International Neuropsychiatric Association International Society of Physical Medicine and Rehabilitation Latin American Brain Injury Consortium North American Brain Injury Society Portuguese National Institute of Emergency Medicine Portuguese Neuroscience Society

• • • • • •

Portuguese Society of Physical Medicine and Rehabilitation Portuguese Society of Neurology Portuguese Society of Neurosurgery Portuguese Society of Psychiatry Portuguese Society of Neuropsychology World Federation of Neurological Rehabilitation

As an endorsing organization, members of NABIS may register for the World Congress at the IBIA member rate. Also of note to NABIS members, Ronald Savage, EdD, NABIS Executive Vice President, was recently appointed to the Scientific Planning Committee for the World Congress. Aside from the wonderful scientific program with world renowned experts in the field of brain injury, we are also introducing at this World Congress a number of new events including candlelight sessions with experts, among others, and several new awards, including the Henry Stonnington Award for best review article in Brain Injury, IBIA’s officially endorsed organizational research journal, and the Jennett & Plum award for clinical achievement in the field of brain injury medicine. Also new this year, awards will be given to top scoring submitted papers. In addition, there will be a pre-conference, full-day symposium on mild traumatic brain injury co-sponsored by IBIA and the World Federation of Neurological Rehabilitation. Finally, we would like to remind all professionals that the deadline for submitting a paper for the World Congress is November 16, 2007 and you are encouraged to submit your research through the online submission system via the IBIA website. For more information on submitting a paper or the World Congress in general, please visit www.internationalbrain.org.

National Assciation of State Head Injury Administrators The 18th Annual State of the States in Head Injury Conference September 5-8 in St. Louis “Gateway to Solutions: Doing What Works” was a success with nearly 200 people in attendance. Over half of the SOS attendees also attended the preconference workshop on “Seamless Transitions…Supporting our Veterans and Families” to focus on the need for improved identification, treatment and support of returning soldiers with TBI from the Iraq and Afghanistan wars. This is a testament to the urgency of the issue and how determined states are to address the needs of those who despite the best efforts of the military and Veterans systems will remain undiagnosed with a TBI. Communities and states are preparing now to welcome our veterans home and to provide them the services and supports they will need. Follow this issue on the NASHIA website www.nashia.org. Congress has not followed through with supporting the state TBI systems infrastructure at the needed funding levels ($21 million for the HRSA Federal TBI Program and $9 million for the Centers for Disease Control and Prevention TBI Program). Please

join us as we continue to try to convince Congress of the importance of these appropriations amounts and in reauthorizing the TBI Act. The latest information is available at www.nashia.org. NASHIA has recently completed the 2007 National Directory of State Government Brain Injury Contacts. This directory contains contact information for over 500 State government employees involved in some aspect of traumatic brain injury service delivery in the 56 U.S. States and Territories. Order a copy at www.nashia.org.

North American Brain Injury Society As this issue of Brain Injury Professional goes to press, the North American Brain Injury Society is busy putting the finishing touches on the Fifth Annual Conference on Brain Injury and the Twentieth Annual Conference on Legal Issues in Brain Injury. We are happy to report that attendance at both conferences will be by far and away our most well-attended events ever. The response to the Blast Injury Institute that kicks-off the Conference has been overwhelmingly positive with professionals from the Veterans Administration, state agencies and every branch of the military registering to attend the specific BII sessions. This new initiative of NABIS seeks to provide professional education on the topic of brain injury caused by exposure to blasts. Through basic science, applied research, multidisciplinary collaboration, conferences and events, the BII provides a fact-based perspective on innovative approaches to help professionals, organizations, public entities and the media address the challenges presented by this growing issue. Much of the science presented at the Conference will be posted on the BII website in the coming months and a follow up scientific meeting for professionals working with soldiers with brain injury is being planned for mid-winter 2008 in the Washington, D.C., area. For more information visit www.blastinjuryinstitute.org. The Conference also marks the first time that NABIS will present the Dr. Randy Evans NABIS Award for Clinical Service. This award, which will be given annually, recognizes professionals who “follow in Randy’s footsteps” in developing needed and innovative services for individuals with brain injuries. Each recipient will be awarded a one year scholarship to help him or her develop an idea or service to promote independence in individuals with brain injuries, especially for those individuals with life long needs. The Dr. Randy Evans Scholars will then present their projects or research at the NABIS Conference the following year to help disseminate their ideas to others. Brain injury professionals are asked to pledge their support to fund this award. Pledges may be extended over several years. To make a pledge, please visit www.nabis.org. Finally, NABIS is very pleased with the response to the new Brain Injury Career Center which is now up and running on the NABIS website. This interactive online job board allows professionals to make employment connections in the specialized brain injury field. To search the job listings or post an employment opening, please visit www.nabis.org and click on “Career Center”.

BRAIN INJURY PROFESSIONAL

More than

conferences

Traumatic Brain Injury Serving the community for two decades, Beechwood has expanded its TBI offering to encompass broad neurological services as well as new Behavioral Remediation and Late Adolescent programs. In addition to TBI, we serve individuals with brain damage due to: • Anoxia/Hypoxia due to drowning, heart attack, drug overdose, alcohol poisoning, anesthesia errors, etc.

• Electric shock/lightning strike • Degenerative diseases • Infectious diseases • Early stage moderate dementias • Tumors • Brain surgeries • Many neurological disorders

• Stroke

2007 SEPTEMBER 27-29 – 20th Annual Conference on Legal Issues in Brain Injury, San Antonio, TX. Contact: conference@nabis.org, www.nabis.org. 27-30 – 68th Annual Assembly of the AAPM&R, Boston, MA. Contact: www.aapmr.org. OCTOBER 7-10 - American Neurological Association’s 131st Annual Meeting, Washington DC. Contact: www. aneuroa.org. NOVEMBER

For information and admissions, call 1-800-782-3299. Our facilities are adapted to accommodate all levels of accessibility.

2-4 - Pediatric Brain & SCI Conference, Miami, FL. Contact: www.pedibrain.org. 3-7 - Society for Neuroscience, 37th Annual Meeting San Diego, CA. Contact: www.sfn.org.

REHABILITATION

SERVICES

A Community-Integrated Brain Injury Program An affiliated service of Woods Services, Inc. www.beechwoodrehab.org

5-7 – BIAA’s Brain Injury Practice College, Westin Casuarina Resort & Spa, Las Vegas, NV. Contact: www.biausa.org. 14-18 – National Association of Neuropsychology Annual Meeting, Scottsdale, AZ. Contact: www. nanonline.org.

Langhorne, PA • Bensalem, PA

2008 FEBRUARY 6-9 - 36th Annual International Neuropsychological Society Meeting,Waikoloa, Hawaii. Contact www:. the-ins.org

A Unique Discharge Planning Option for those patients with:  Acquired Brain Injury  Behavioral Dysregulation  Physical Disability Mission: To develop and provide state of the art transitional, residential, and vocational rehabilitations services for individuals who have a known or suspected brain injury through a continuum of services allowing the individuals to progress to the highest functional level possible. To Schedule an Assessment or Make a Referral: www.touchstoneneuro.com or call 1-800-414-4824 34 BRAIN INJURY PROFESSIONAL

20-22 - International Stroke Conference, New Orleans, LA. Contact: www.strokeassociation.org. APRIL 9-12 – The International Brain Injury Association’s 7th World Congress on Brain Injury, Pestana Palace Hotel, Lisbon, Portugal. Contact: mjroberts@aol. com, www.internationalbrain.org. JUNE 4-7 - European Congress on Physical Medicine & Rehabilitation, Brugge, Belgium. Contact: www. medicongress.com. SEPTEMBER 18-21 – 7th Mediterranean Congress of Physical Medicine & Rehabilitation Medicine, Potorose, Slovenia. Contact: marincek.crt@mail.ir-rs.si. 24-27 – 5th World Congress for NeuroRehabilitation, Rio de Janeiro, Brazil. Contact: traceymole@ wfnr.co.uk. OCTOBER 22-25 - National Association of Neuropsychology Annual Meeting, New York, NY. Contact: www. nanonline.org.

A Continuum of Care for Adults and Children with Brain Injuries.

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Brain Injury Rehabilitation Programs Rainbow’s unique “Continuum of Care” approach to brain injury rehabilitation offers a variety of programs providing residential, day treatment and outpatient services for individuals of all ages. Our professional staff, specially trained in brain injury treatment, consistently provides understanding, supportive and progressive rehabilitation at every stage of the recovery process. To receive a free copy of Rainbow’s Brain Injury Rehabilitation “Continuum of Care” brochure call...

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36 BRAIN INJURY PROFESSIONAL