BIP: Social Capital and TBI

BR A IN INJURY professional vol. 8 issue 3

The official publication of the North American Brain Injury Society

Social Capital and Brain Injury

The Power and Potency of Social Capital Social Capital: What are the community CLUES? Balancing the “Cost” of Contra-Social Behavior with One’s Social Capital: Considerations for Brain Injury Professionals Life, Liberty and the Pursuit of Happiness: The Applications of Culture Change to Improve Long-term Care after Brain Injury Social Capital, Rehabilitation Professionals and Brain Injury: Independence to Interdependence BRAIN INJURY PROFESSIONAL

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contents

BRAIN INJURY professional vol. 8 issue 3

The official publication of the North American Brain Injury Society

north american brain injury society

departments 4 Editor in Chief’s Message 6 Guest Editor’s Message

chairman Ronald C. Savage, EdD Immediate Past Chair Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family Liaison Skye MacQueen executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Megan Bell graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes

30 bip Expert Interview brain injury professional

publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legislative Issues Susan L. Vaughn founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Megan Bell

32 Non-profit News 34 Legislative Roundup BRAIN INJURY professional vol. 8 issue 3

The official publication of the North American Brain Injury Society

Social Capital and Brain Injury

The Power and Potency of Social Capital Social Capital: What are the community CLUES? Balancing the “Cost” of Contra-Social Behavior with One’s Social Capital: Considerations for Brain Injury Professionals Life, Liberty and the Pursuit of Happiness: The Applications of Culture Change to Improve Long-term Care after Brain Injury Social Capital, Rehabilitation Professionals and Brain Injury: Independence to Interdependence BRAIN INJURY PROFESSIONAL

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features 8 The Power and Potency of Social Capital

bY Al Condeluci, MSW, PhD 12 Social Capital: What are the community CLUES?

by Janet M Williams, MSW PhD 16 Balancing the “Cost” of Contra-Social Behavior with One’s

Social Capital: Considerations for Brain Injury Professionals

by David Krych and Joanne Finegan 22 Life, Liberty and the Pursuit of Happiness: The Applications

of Culture Change to Improve Long-term Care after Brain Injury

by David Seaton

26 Social Capital, Rehabilitation Professionals and Brain Injury:

Independence to Interdependence

by Jill Koppang, RN, CRRN, M.Ed, and Patti Flaherty, Executive Director CONNECT Communities

EDITORIAL ADVISORY BOARD 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 Megan Bell 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. © 2011 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

BRAIN INJURY PROFESSIONAL

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editor in chief’s message

Ronald Savage, EdD

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Community... Culture... Compassion... three “Big C” words that belong in our brain injury vocabulary that are all brought for us by another “Big C” – Condeluci. Dr. Al Condeluci is well known as a powerful speaker and writer, and, more importantly, as a caring professional who exemplifies another important “C word” – Change. In this issue of Brain Injury Professional, Al challenges all of us to change and think differently about post-traumatic growth after brain injury.

As we all know, most individuals with brain injuries and their families spend their lives circling the wagons cobbling together splintered services, searching for professionals who understand their ongoing needs, and desperately trying everyday to remain active members in their chosen community. We all know the many struggles these individuals experience and how hard professionals work to ameliorate these problems, but we also have to admit we know that people with brain injuries living in a supportive community with people who truly care about them can often keep the other ravages of brain injury at bay.

As such, Dr. Condeluci discusses the concept of “social capital” and the connections and relationships that develop around community and the value these relationships hold for its members. He states “… your circles of support and the reciprocity they create are the most important element in your safety. In fact, it has been suggested that social isolation, or the opposite of social capital, it responsible for as many deaths per year as is attributed to smoking.”

Furthermore, for people living in these supportive communities, such as the ones Dr. Janet Williams has created

in Kansas, there are “…community clues after brain injury that offer a framework for tailoring services to a person”. Dr Williams queries: How do we make the shift to support community membership, the civil rights of people with brain injury and the right of every person to live, work and play in his or her own community? It is not learning certain skills in one setting to prove you can perform them at home? Is it not getting home to learn skills where you will use them? Does function create form?

Of course, all these ideas require professionals to push their thinking beyond their traditional training, to change the way we look at brain injury recovery, adjustment, and post-traumatic growth.

David Seaton, a Plenary Speaker on Culture Change at this year’s NABIS Conference, has long pointed out that people with brain injuries spend 99% of their time in “life” and not in hospitals or rehab facilities. Yet, more money is spent on the “medical side” of brain injury than the “community life side”. He states that culture change seeks to transform longterm care by promoting the continued personal growth and well-being of the individuals who both live and work in the setting and “transforming traditional long-term care programs into more vibrant and joyful living environments for employees and residents alike”.

NABIS wants to thank Dr. Al Condeluci and his authors for a thought provoking issue of Brain Injury Professional that not only offers up a new way of thinking, but also provides examples of how we can make these changes and truly realize the power and potency of social capital.

Ronald Savage, EdD

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For more information, please contact us at: 1-888-886-5462 or visit our website at: www.Tree-of-Life.com

Transitional Neurorehabilitation and Living Assistance for Persons with Acquired Brain Injury Tree of Life Services, Inc. 3721 Westerre Parkway • Suite B • Richmond, VA 232335 BRAIN INJURY PROFESSIONAL

guest editor’s message

Al Condeluci, PhD

The Asian culture uses a term, “shibumi,” which has no equivalent in western culture. The closest that we can get to this term is to describe its impact. The term “shibumi” refers to the blending of simplicity and complexity. It is used to describe concepts that are both simple, yet complex, such as a bridge or a Japanese garden. Both a bridge and even a Japanese garden are simple things. A bridge connects two points, and a Japanese garden is a simple display of sand, rocks, and vegetation. Yet, when you look a bit closer, a bridge becomes a complex array of steel, girders, cement, and engineering that meets complex specifications. Similarly, a Japanese garden, when looked at more closely, especially through the eyes of the gardener, is a complex blend of designs, positioned carefully so as to accentuate the key intent of the gardener. A Japanese garden and a bridge are shibumi concepts.

So too is social capital. It is a term used to describe the relationships in people’s lives and the benefit derived from these relationships. Social capital is a shibumi

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concept. In one way it is a simple, almost innocuous phenomenon that is so commonplace for us that it hardly merits any more discussion. All people have relationships in their lives, end of story.

Yet, like a bridge or a Japanese garden, relationships have their deep and complex side. Any of us reading these words have had struggles, some powerful and challenging, with relationships in our lives.

They are simple, yet complex.

More, we know today that most of the good things in life – health, happiness, satisfaction, advancement, achievement, generosity, compassion, kindness, even life expectancy are all elements tied to social capital. Quite simply the more relationships in your life, both in quantity and quality, the better your life becomes.

And so, in Brain Injury Rehabilitation it would seem to be, if we really want the folks who receive services to get back to the things they experienced in life, then the key should be found in building social capital. Can it really be this easy?

This issue of the Brain Injury Professional explores this simple, yet complex concept of relationships. The lead article, gives an overview of the notion of social capital. This introduction attempts to define terms, explore some of the things we know, and set the stage for a thorough examination.

The first supporting article by Dr. Janet Williams focuses the importance of community and uses an interesting approach to create, listen, understand, and expect surprises, but center on social capital.

Next, David Krych and Joanne Finegan counter with a detailed look at the complex behavioral challenges that often accompany brain injury, offering some treatment approaches.

The third supporting article by David Seaton illuminates the growing move-

ment of “culture change” which is looking to transform how facilities provide long term care.

The final supporting article comes from Patti Flaherty and Jill Koppang as they conceptualize the importance of social capital in a community support setting.

The last three aspects of this issue are developed by Jeff Fromknecht and unfold in a provocative interview with John McKnight, a long time community builder from Chicago, a review of his recent book, The Abundant Community: Awakening the Power of Families and Neighborhoods, and a listing of key websites and resources listings to learn more about social capital and community building.

The work in Brain Injury Rehabilitation is varied and challenging, but the one key goal for the consumers served is successful return to community. This single goal is, in essence, useless, unless people can build, sustain, and maintain relationships in their lives. And so we come full circle. Until we can find a way to assist individuals, and in a macro sense, change the perspectives of the greater community, people with brain injuries will continue to languish in the goals they want to achieve.

I want to thank my colleagues who have participated in this special issue and especially Jeff Fromknecht, who tirelessly helped move this project to completion.

Similarly, thanks to Dr. Ronald Savage, and Charles Haynes, who are the driving forces behind the” Brain Injury Professional.” But mostly I want to thank you, the reader, for opening up your mind and consideration to the power and potency of social capital. Day in and day out, as professionals, you give of yourself, so that others may lead a more valued life. Together we can and do make change; together we can reshape the world.

Al Condeluci, PhD

The Power and Potency of Social Capital

bY Al Condeluci, MSW, PhD Introduction

The field of Brain Injury Rehabilitation is at a key juncture. If you identify the initiation of this field with the advent of the NHIF in 1980, we are now turning our 30 year corner. Much has occurred and many advances have unfolded in this time.

Still, as a discipline, we are hard pressed to say that that the goals, objectives, and wishes of survivors and their families have been realized. Far too many people with disabilities are unemployed, institutionalized, frustrated and socially isolated in their lives (Erickson & Lee., 2008).

This reality challenges us to remove our blinders and look more closely at our programs, services and approaches and consider a reformation of sorts. We know that any viable change is found at the borders of existing paradigms. When we consider new alternatives we must look beyond the status quo.

I am not so bold to suggest that I have the answers, but in my 40 years of advocating and providing services and supports to people with brain injuries I do know what questions to ask.

Indeed, Steven Covey suggests that you start any endeavor by beginning with the end in mind (1989). In this spirit, then, I suggest that as we start our 31st year as a discipline we challenge ourselves to do just that. What do the people we serve want for themselves? What is the end they have in mind? I think these questions will reframe our challenge and offer new ideas, direc8

BRAIN INJURY PROFESSIONAL

tions and possibilities, and in my experience the key answers to these questions are found in the elements of viability in community and the opportunity to build sustaining social capital (relationships).

To fully appreciate how we might change, we need to examine these concepts of community and social capital in a much more deliberate manner.

Primer on Community

Community is a network of people who regularly come together for some common cause or celebration. A community is not necessarily geographic, although geography can define certain communities. To come to an understanding of community is to appreciate that community really is based on the relationships that form, not on the space. In fact, space can be an abstract notion when it comes to understanding community. Think about the global community created by the Internet. These communities are not bound by geography, but are relationships forged in cyberspace.

The term “community” is the blending of the prefix “com,” which means “with,” and the root word, “unity,” which means togetherness and connectedness. The notion of being “with unity” is a good way to think about the concept of community.

When people come together for the sake of a unified position or theme, you have community.

The term “culture” is analogous to community, but culture relates more to the behaviors manifested by the community. People bound together around a common cause create a community, but the minute they begin to establish behaviors around their common cause they develop a culture. In this way, culture is the learned and shared way that communities do particular things. Cultures and communities have many features, but one key ingredient is regularity. That is, for a community to be viable it must have some regular points of contact and connection. For a family community, this might be annual reunions or the celebration of holidays together. For a religious community, this would be weekly services and holy days for celebration. For organizations, this would be regular staff meetings or stakeholder gatherings. For clubs, groups or associations, regular meetings or gatherings formalize the group as a community.

The more people come together, the more they find other ways that they are linked. That is, when a person first comes to a community he or she is drawn by the common interest of the community. As she attends again and again she will find other similarities with people in the community and create a deeper sense of bonding.

Other features of community include the notions of consent, creativity and cooperation. Years ago Robert Nisbit (1969) suggested that community thrives on self-help and equal consent.

He felt that people do not come together merely to be together, but to do something together that cannot be done in isolation.

Others (Sussman, 1959) identified community for its sense of interdependence. McKnight (1988) described community as a collective association driven toward a common goal.

Indeed, if we think about communities that we know, they all work toward some identified goal. From teaching people new skills, to saving souls, to addressing a common problem, or to launching a government, all these ventures capture the power of community, and then, through their behavior, create a culture.

The most vibrant and successful of these communities are the ones that have built more social capital.

This basic approach to community and culture blends three key features. One is the fact that community is a network of people. Often these people may have great differences or even distances between them. They can be different in age, background, ethnicity, religion or many other ways, but in spite of their differences, their commonality or common cause pulls them together. The similarity of the common cause or celebration is the second key feature of community and the glue that creates the network. Regardless of who the members of the network are as people, their common cause overrides whatever differences they may have and creates a powerful connection. Finally, as the collection of people continues to meet and celebrate on a regular basis, they begin to frame behaviors and patterns and become a culture, the third key ingredient. These regular meetings bond the community members as they discover other ways that they are similar.

Again, these three key features are: 1. Diversity of membership 2. Commonality of celebration 3. Regularity of gathering One of the most important facets of community is that it

promotes a sense of social capital for the members who belong.

Social capital refers to the connections and relationships that develop around community and the value these relationships hold for the members. Like physical capital (the tools used by communities) or human capital (the people power brought to a situation), “social capital” is the value brought on by the relationships.

Primer on Social Capital

L.J. Hanifan first introduced the idea of social capital in 1916.

He defined it 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…The individual is helpless socially, if left to himself… If he comes into contact with his neighbor, and they with other neighbors, there will be an accumulation of social capital, which may immediately satisfy his social needs and which may bear a social potentiality sufficient to the substantial improvement of living conditions in the whole community.

The community as a whole will benefit by the cooperation of all its parts, while the individual will find in his associations the advantages of the help, the sympathy, and the fellowship of his neighbors.”

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.” (p.19).

Other sociologists suggest that social capital is enhanced by social currency. This idea is how social fodder links people together. For example, a popular person who is the life of the party might be regularly included in activities. To this extent he is strong in social capital. His jokes and storytelling, the items that make him popular in the gathering, are the social currency he exchanges.

Think about the many communities with which you are involved. People who might be different from you in many ways surround you—your family, your work team, your church, or your clubs or associations—but the commonality of the community tends to override the differences you have and create a strong norm for connections. The exchange is based in social currency.

Further, these relationships become helpful to you for social reasons. Sociologists call this helpfulness “social reciprocity.”

Social capital is critical to a community 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 processes, and as a result, biological processes This last point prompts Putnam (2000) to assert: “If you belong to no groups, but decide to join one, you cut your risk of dying over the next year in half!”

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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 key 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 health, happiness and safety. In fact, it has been suggested that social isolation, or the opposite of social capital, is responsible for as many deaths per year as is attributed to smoking.

Social Capital and Brain Injury

One of the clear realities of social capital and brain injury is that, although we have not had any clear empirical studies, most professionals and family members will tell you that relationships often end after an injury. Marriages, partnerships and other unions are often impacted by divorce or separation. Even the loss of children or the separation of children from the parent with a brain injury is, unfortunately, commonplace. These losses are not just with families, but the broader notions of friendships are equally at risk. Individuals and their families report the powerful loneliness and isolation that unfolds after an injury or disability.

When we consider social capital for people with disabilities, we must recognize this void. We know that people with disabilities still are separated from the greater community and mostly involved in special programs or services designed for him or her.

In these realities, the major outlet for social capital is found only within the borders of the special programs. To this extent then, the relationships that constitute the social capital of many people with disabilities are other people with disabilities. The narrowness of this reality leaves a significant void.

Consider the notion of reciprocity. The more you become connected with your community, the more people begin to watch out for each other. If one day a regular member of your group doesn’t show up, a natural inclination would be to check up on them. This sense of group reciprocity is what leads to individual safety.

If the major social capital outlet for people with disabilities is other people with disabilities, then the reciprocity factor can become narrow. The more narrow the confines of reciprocity, the less impact it offers.

Putnam’s ideas of how social capital builds tolerance and lessens pugnaciousness also fit closely to the concept of cultural shifting. Anthropologists have found that for communities to get better, new and different ideas, people or products are necessary. Yet intolerant and angry communities are not as open or as ready to absorb new things. Consequently, cultural shifting is more difficult when communities remain narrow. Social capital helps build tolerance because the exposure to others challenges us to consider new things. This developing openness then has an effect on both intolerance and pugnaciousness. Simply put, if you become more exposed to difference, anger levels have a greater potential to go down and openness goes up.

This notion of social capital and the blending of similarity of interest with natural diversity of the members create unique phenomena for growth and development in both people and 10 BRAIN INJURY PROFESSIONAL

organizations. The drive to find, create or be more than we had before is magically transformed when it is blended with community. The reciprocity developed through social capital is helpful as well for either specific or general reasons.

There are many other issues that might impact social capital when associated with disability. Along with the narrowness of exposure and the tendency to congregate people who have disabilities, the notion of basic physical issues and architectural barriers often preclude participation.

Many brain injuries bring associated physical disabilities and this creates a variety of problems. First might be the attendant needs of the person. It is hard to expect a developing friendship to sustain some of the personal care needs. Indeed, any family caretaker will tell you how exhausting it is to take the most routine of trips into the community.

In some cases where individuals require wheelchairs or other mobility devices the simple elements of access might be mitigated by a curb or staircase. The sheer time demands that follow can also compromise a simple trip to a restaurant or theater.

Beyond all of these issues are stark behavioral manifestations that can also be a part of the brain injury reality. An outburst or narrow perspective that might be a new reality for the person who has a brain injury can wreak havoc on any community outing.

Clearly the challenges of engaging community and building relationships are difficult at best and any person reading these words who has been on a community outing with a person who has physical or behavioral manifestations related to brain injury can offer testimony. Still, we must try. In a simple equation, if treatment or clinical intervention can not change the person, then the target of action must shift to the community.

Actions for Consideration

So, knowing what we do about community and social capital, what directions, actions, and new approaches might we consider in Brain Injury Rehabilitation? To this end I want to suggest some key adjustments and shifts in perspective that are much more from a macro framework than from a micro or clinical approach that the field currently uses to achieve its goals.

First we must understand that social capital is a cornerstone issue in experiencing success in the broader aspects of community. More than therapy or programs, friends provide the fulcrum in the following areas: •

•

Most people get jobs in the community via their social capital. In fact, one recent study found that 71% of respondents to a vocational rehabilitation survey reported that they got their first job through a friend or family member. In fact, we all know that the best way to get a new or better job is through your social networks—your social capital. Certainly, even if you find a job on your own, you still need to list references—friends that will vouch for you. Social capital is closely tied to vocational success, not only in getting but in keeping jobs as well.

Most people lose jobs not because they cannot do the work, but because they have difficulty fitting into the social fabric.

Housing is another area where social capital is critical.

Most people reading these words are probably living with someone they chose from their social network. In fact,

•

social capital is an absolute for people—no one, unless he or she is in an institutional model, lives with someone he or she has not chosen. Yet, most people with disabilities find themselves in housing “programs” where their roommates are selected for them by an agency, program, or case manager.

Finally, transportation, the key to our ability to get around the community, is closely aligned with social capital. Unless you are poor or institutionalized you probably ride in your own car, and if your car breaks down, you call a friend.

Clearly the more social capital you have the better your chances for getting a job, finding someone to live with, and getting a ride. Social capital is directly related to the key goals that people with disabilities report that they want from systems. But there is more.

If you push the outcomes discussion to a higher level, and think about the most important quality of life indicators known to people in general, we find that again, social capital is directly connected as well. When sociologists ask people to identify the most important things they want for the people they love the top three answers are health, happiness, and longevity. These three things — health, happiness, and longevity — are the highest measure of life success - for all people.

To this end, studies over the past 40 years show clearly that our health, happiness, and longevity are all enhanced by our social capital. Quite simply, the more relationships in your life, the healthier you are, the happier you are — and listen to this — the longer you live.

So the facts are clear: The very things that people with disabilities want from the human service system can and are enhanced by social capital. Yet the very notion of social capital has not at all been embraced or understood by these very systems that relate to people with disabilities. In fact, we don’t even know the extent of social isolation (except in anecdotal ways) that people with disabilities experience.

So what does all of this mean for us? Clearly, if we want to see people with disabilities be more successful in community outcomes, we must start with a shift in perspective and consider the power and potency of relationships. To this extent I recommend the following key actions: •

•

•

We have to shift from a micro perspective where we look at the dysfunction of disability and begin to understand and build competence in the macro notion of community. All people have things that make them engaging.

Let’s stop trying to “fix” people and start trying to connect them to the community via their affinities.

We need to define community and understand the key elements related to community building. Most of us in human services give lip service to community but have not really explored the elements, notions, and aspects associated with it. We must try to shed our “clinical bent” and think more anthropological.

We must appreciate that all social capital starts with basic affinities and commonalities that people have. These affinities or cultural commonalities are the first step to community and relationships When people begin to

•

•

•

embrace that which is common, they begin to dismiss the differences that can get in the way.

We need to explore community and find the places of association where people share their affinities. All communities are rich in assets and opportunities. We all want to gather around the things we like, and these gatherings offer the start point for our social capital.

We need to gain competence in how communities operate. This means understanding that all communities meet on a regular basis and have rituals, patterns, jargon, and a shared sense of history. These elements are key things that can play an instrumental role in someone becoming a “part of the mix.”

Finally, and maybe most important, we must understand the cultural power of gatekeepers who create the segue for newcomers to enter existing communities. All of us have experienced gatekeepers—people in our life who have welcomed us and shown us the ropes when we entered a new community or group.

All of these actions demand a new framework for human services in and of themselves, and we should all become students of this information. Suffice it to say, the single most important action any program or service that purports to serve people with disabilities must do is to focus actions on having people build more social capital.

Over the years we have put much time, energy, and money into services for people with disabilities. Yet the data suggests that we have not significantly moved the needle on community outcomes for the very people we serve. We must be bold enough to face these failures and have enough strength to move our actions from current programs to a focus on social capital and the actions that will build social capital. Until we do this, we will continue to fail the very people we are chartered to serve.

REFERENCES Erickson, W., & Lee, C. 2007 Disability Status Report: United States. Ithaca, NY: Cornell University Rehabilitation Research and Training Center on disability Demographics and Statistics, 1987.

Covey, S: The 7 Habits of Highly Effective People. New York: Free Press, 1989.

Hanifan, L. J. (1916) as reported in Putnam, R: Bowling Alone. New York: Simon and Schuster, 2000.

McKnighjt, J: The Careless Society. New York: Basic Books, 1988.

Nisbit, R: The Quest for Community. Delaware, ISI Publishing, 1969.

Sussman, M: Community Structure and Analysis. New York: Crowell, 1959.

ABOUT THE AUTHOR

Al Condeluci is a lifelong resident of the Pittsburgh area. He received his masters and doctorate degrees at the University of Pittsburgh. For the past 38 years Al has been associated with UCP of Pittsburgh where he currently serves as Chief Executive Officer. Al holds faculty appointments with the University of Pittsburgh’s School of Health and Rehabilitation Sciences and Robert Morris University’s Graduate School of Business. Al serves as a consultant, collaborator and lectures extensively around the country often on material from his books, Interdependence (1991, 1995), Beyond Difference (1996), Cultural Shifting (2002), Advocacy for Change (2004) and Together is Better (2008). Al and his wife, Liz, have 3 children, Dante, Gianna and Santino. They live on the family “hill” in McKees Rocks PA with some 17 other Condeluci families. Al can be reached at 412-683-7100 x 2122, acondeluci@ucpclass.org, www. alcondeluci.com BRAIN INJURY PROFESSIONAL

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Social Capital: What are the community CLUES?

by Janet M Williams, MSW PhD

I get by with a little help from my friends. ~John Lennon What is it that Albert Einstein said about doing the same thing over and over again and expecting different results? This article explores the pervasive expectations, practices and policies in the field of brain injury. It introduces a new paradigm that challenges three main concepts that have been the mainstay of brain injury rehabilitation for the past 25 years. These three beliefs will be addressed in light of creating a new paradigm that supports community membership, the civil rights of people with brain injury and the right of every person to live, work and play in his or her own community.

There are some unwavering beliefs that have taken hold in the field of brain injury. First, there is an expectation that a person must complete rehabilitation with experts before returning to the community to “get a life� after a brain injury. If you are not one of the lucky few who get such care, you are considered to have lost out and have a slimmer chance of a good outcome.

The expertise is often extended into the community and there has become a pervasive belief that every person who comes into contact with a person with a brain injury must somehow be a certified specialist. This specialization further drives up the cost of rehabilitation and widens the gulf of deficits that separates 12 BRAIN INJURY PROFESSIONAL

people who have experienced brain injury from those who have not. It also further accentuates a person’s deficits or problems and alienates people from community membership.

Second, the lack of participation by people with brain injuries in their own future is standard practice. Team meetings occur on a regular basis without the person, with time often spent discussing what the person will and will not be told about his or her condition. Discharge plans take place and people are moved from program to program, without even the choice of who will share their room. Family members are given precedence to information about the person and it is the exceptional situation when a person is put in charge of her own life. While there are many seemingly good justifications for this benevolence, professionals intentionally exclude people from their own future plan. Seldom is there a professional within a program who stands up and questions the status quo. If the person with a brain injury stands up for herself, she is often said to be exhibiting some type of symptom of her brain injury that is causing her to do so. People with brain injuries are then ill prepared to be self advocates when professional services are no longer available.

And third, in the arena of public policy, the focus on early and post acute rehabilitation to the exclusion of freedom for people with brain injuries in the community creates an even

greater chasm. The initial sprint of inpatient and post acute rehabilitation exhausts even the best insurance plans, leaving few financial resources for the marathon that looms ahead. The transition is the car ride home, and people with brain injuries are left to their own devices to find a place to live, employment and friends. This is particularly ironic given that most discharge plans list a myriad of deficits that would preclude the person from finding a place to live, employment and friends.

Thus, even 25 years later, too many people end up in nursing homes, homeless, or incarcerated.

A New View How do we make the shift to support community membership, the civil rights of people with brain injury and the right of every person to live, work and play in his or her own community? It is not learning certain skills in one setting to prove you can perform them at home. It is getting home to learn skills where you will use them. Being “of ” the community becomes as important as learning skills to get “to” the community. Rather than taking the view that someone cannot go home until she needs fewer services, the person goes home as soon as possible and funding follows. Paid supports are provided at whatever level is needed and staff fade out as new skills are acquired or community supports step up. Unpaid supports of friends and neighbors can be enlisted so there is an active relationship early on. In short, the intensity of services is truly tailored to a person.

Therapists also make a shift. Functional goals address everyday activities like going to the grocery store and working out at the gym. These activities are incorporated with reaching out to meet new people and invite friendships. The therapist uses a collaborative approach formed with the person to achieve goals set by the person. Additionally, the therapist becomes the coach, consult and support for the person to develop his or her own creative solutions to building social capital.

The enormous advantages of this approach are clear. Assessment becomes asking the person what he or she wants to achieve and what her friendships will look like. Now, important issues that have been left for the end of rehabilitation, like making friends, can be addressed immediately. Because goals are set based on the environment, they don’t have to be set up in an artificial way. For example, if a person wants to go to the prom, he can begin problem solving about that goal, overcoming whatever barriers may exist. Who will I take? How will I get there? What friends will I hang out with on prom night? These questions all become part of the goal and all of the intertwining circumstances are worked out in real life.

Community CLUES Community CLUES after brain injury offers a framework for tailoring services to a person in his or her own home and community while creating social capital the entire way.

Create positive environments with control and choice.

Many of the adaptations a person needs after brain injury are environmental. Changing how a person walks, talks, or remembers is a small part of rehabilitation. Those are the issues often addressed early after a brain injury and in the hospital environment. The shift to home puts a greater focus on adapting the environment to support the person to be successful. A positive

environment is one in which the necessary compensation techniques are built right into the person’s day. Adaptations may be as simple as a ramp into the person’s home if he uses a wheelchair, or more complex such as systems that provide prompts and reminders for appointments or medication schedules. A person has the opportunity to progress in walking, talking and remembering while going about his daily life at home.

Another important environmental factor is making sure control and choice are ever present for the person. Control means the person is making all decisions. A simple rule that “nothing for me without me” keeps families and professionals honest in the decision-making process; the person chooses everything from the place where she will live, the goals she will work on and the type of friends she wants. The person also chooses who will provide her personal care attendant services.

With more control and choice comes more ownership of both the process and the outcome of rehabilitation.

Listen to the person and develop goals based on what you hear, not on what assessments reveal.

People are motivated by what they are interested in and what they do well. Listening for these interests and strengths forms the basis for goal setting. That is, goals are based on what the person wants to accomplish, not on what the team thinks has to happen. Assessment, then, reveals the challenges and strengths the person brings to trying to achieve the goal. For example, if a person wants to return to school, the focus is now on HOW that can be accomplished rather than on whether it can be accomplished. Goals are broken down into whatever steps help a person accomplish it. For example, a person may want to drive. Instead of telling him that he will never drive, driving becomes the goal. The person is not given the keys to the car; he is given the steps and skills necessary to drive. The steps include measures that look at things like driving safety and ability. This way, as each step is mastered, or not, the person receives reallife feedback on his driving ability. If the person does not pass a specific test necessary for a part of driving, he learns from reallife experience, like all of us, what he can or cannot do. Again, he learns from real-world experience what he needs to do for future success.

Understand what is happening from the person’s perspective.

All team members put themselves in the person’s shoes and ask: Are these the services I would want to receive? Is the focus on what is most important to the person receiving services? Based upon what we know about the person’s strengths and challenges, have the goals been broken down in a way that supports the person to accomplish them?

True understanding helps everyone unify an approach that is truly consumer centered. It is an important way to avoid miscommunication and goes a long way to minimize what has been referred to as “behavior problems” in other arenas.

Expect that everyday life brings pitfalls, surprises and successes.

In a home and community-based setting people learn by experience. And experience is a hard teacher because she gives the test first and the lesson later. Everyone is committed to knowBRAIN INJURY PROFESSIONAL

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ing that they will do “whatever it takes” to support the person at home. By trying new things within an environment that respects health and safety, the world becomes the classroom.

This includes those days of uncertain performance and uneven skills. Pitfalls are a part of life and offer a chance to learn. Surprises at home are managed better when staff are present to help solve the issue on the spot rather than waiting for a team meeting at a program away from home. The successes are great, even when it is something as seemingly small as making your own appointment with your doctor or setting up transportation yourself after a long stretch of having others do it for you.

Social capital is the journey, not the destination.

Professionals are with a person in the beginning sprint of rehabilitation, and families are there through the entire marathon. Most families use friends and family for coping with brain injury; few seek counseling. Often, friends will gather immediately after a brain injury and fade over time. Rather than lament about lost friends, it is important to encourage the person to look ahead to new friendships. The same attention in breaking down the task of learning any other skill can be applied to making friends.

The best approach is to give the person and family tools and education that will enable them to support each other over the long haul. Realize that professional services and support are a small part of life after brain injury. This includes teaching people to access resources, reach out to others in similar situations for advice and to honor their own values and instincts in advocacy. Additionally, educating people about the importance of social capital and social networks will help people find the support and friendships they need in their own community for the long haul.

Community CLUES after brain injury offers a framework for tailoring services to a person with a brain injury in his own home and community. By creating positive environments with control and choice, and by listening and developing goals based on what the person tells us, not on what assessments reveal, the person begins to gain confidence to master his life at home after brain injury. Additionally, support staff who understand what is happening from the person’s perspective and know that he will experience pitfalls, surprises and successes during the course of daily life show an empathy that goes a long way in building the trust that is needed for him to be successful. And finally, services that support individuals to increase their social capital to create networks for jobs, friends and community during the journey of brain injury launch them off on the marathon with the skills they will need to traverse the terrain ahead.

About the Author

Janet Williams has been an advocate for community inclusion since 1982. In 1991, after work in a rehabilitation setting and brain injury association, Janet founded communityworks inc. For the past 20 years Janet has learned to walk the talk of full inclusion for people with brain injuries. Her organization, communityworks inc, has assisted more than 2,000 people to live free of institutions and become engaged in their own community. Janet consults and speaks frequently on how to transform organizations to become more consumer focused. Janet has written many articles and edited two books related to families, community and brain injury.

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new tbi documentary Going the Distance: Journeys of Recovery is a hour-long character-driven documentary in which four survivors take us inside the experience of traumatic brain injury (TBI) to reveal their personal stories of devastation, heroism and hope. Often called “the Silent Epidemic,” TBI impacts 1.5 million Americans and costs American society $60 billion every year. Going the Distance focuses an intimate lens on the daunting, inspiring journeys of the survivors as wezll as the people who love and care for them.

The film’s profiles in courage include: Jason Poole, an African-American Iraq War vet nearly killed by a roadside bomb; Kristen Collins, a nurse who was badly injured in a motorcycle accident; Jay Waller, a Yale graduate who was the victim of a savage road-rage beating; and Ian McFarland, a six-year-old who survived the auto accident that made him an orphan.

For Jason, Jay, Kristen and Ian, Going the Distance involves both acceptance of an impaired new self as well as learning to adapt to the changed person they have become. Although the individual stories and circumstances are unique, the dilemmas they face are universal and profoundly human, impacting that part of ourselves, the brain, that informs who we are and governs our personality, thoughts, feelings and perceptions. An injury to the brain is an injury to the essential self, which is why Kristen explains that she and all TBI survivors “have to reinvent who they are.” Interweaving cinema verite scenes, interviews, home movies and archival footage, Going the Distance explores the physical, emotional and economic challenges of traumatic brain injury and disability for these survivors as they reinvent themselves.

In spite of undeniable and enduring hardship, including life-long cognitive and emotional challenges, each protagonist has an inspiring recovery arc in which he or she regains a significant measure of his or her pre-injury dream and envisions a new life path. Woven with the compelling personal stories, the documentary also explores the urgency of this silent epidemic in which millions of TBI survivors do not receive the care and rehabilitation they need.

Produced and directed by three-time Emmy Award winning filmmaker, David L. Brown, Going the Distance promises to be an inspiring and invaluable addition to the media resources on TBI. The documentary is five weeks and $40,000 from completion. For more information visit: www.goingthedistance.info. Brown’s website is www.DLBfilms.com.

conferences 2011

SEPTEMBER 14-17 – 24th Annual Conference on Legal Issues in Brain Injury, New Orleans, LA. For more information, visit www.nabis. org.

14-17 – 8th Annual Conference on Brain Injury, New Orleans, LA. For more information, visit www.nabis.org.

OCTOBER 4 – 6 – Annual State of the States in Head Injury Meeting, Kansas City, MO. For more information, visit www.nashia.org/ SOS2011.asp .

11 - 15 – ACRM-ASNR Annual Conference, Progress in Rehabilitation Research, Atlanta, GA. For information, visit www. acrm.org NOVEMBER 12 - 13 – 32nd Annual Neurorehabilitation Conference on Traumatic Brain Injury, Stroke, and Other Neurologic Disorders, Cambridge, MA. For more information, visit www.braintreerehabhospital.com/Braintree-Rehabilitation-Annual-NeuroConference.asp 16 - 19 – 31st Annual Conference, Translational Neuropsychology: Bridging Science and Practice, Marco Island, FL. For more information, visit http://nanonline.org/NAN/Conference/Conference.aspx 17 - 20 – 2011 AAPM&R Annual Assembly, Kissimmee, FL. For more information, visit www.e-aapmr.org/imis/imisonline/ eMeetings/eMeetings/MtgInfo.cfm?MtgCode=AA2011

2012

JANUARY 9 -11 – 2012 Brain Injury Summit - A Meeting of the Minds, Beaver Creek, CO. For more information, visit www.braininjurysummit2012.org.

FEBRUARY 15 -17 – 22nd Pacific Coast Brain Injury Conference, Vancouver, BC, Canada. For more information, visit. www.brainstreams. ca/conference MARCH 21-25 – Ninth World Congress on Brain Injury, Edinburgh, Scotland. For more information, visit internationalbrain.org. This is the official World Congress of IBIA. BRAIN INJURY PROFESSIONAL

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Balancing the “Cost” of Contra-Social Behavior with One’s Social Capital: Considerations for Brain Injury Professionals

by David Krych and Joanne Finegan

Nothing can spend social capital faster than acting in a way that is counter to the culture of the community one wishes to be identified with. In the case of individuals with traumatic brain injury (TBI), behaviors that put the individual at odds with his or her peers represent a significant obstacle to successful community reintegration. Even when an individual is not at risk for doing specific harm to him/herself or others, problems with impulse control, disinhibition, social communication, mood disturbance and self-awareness set the person who has sustained a TBI apart and makes his or her being part of a group difficult.

Consider this scenario: You are on an Audubon nature walk and are paired with a young woman who walks with too much vigor and talks too much and too loudly. You know that it is likely that the offending party will be taken aside and advised that her behavior needs to change. The implication is that she will not be welcomed back for a future gathering if she doesn’t conform to the quiet vigilance that is needed to see birds in the wild. If that young woman has a brain injury it is unlikely that she will be aware that her behavior does not fit the expectation of the group, and she will not be able to intuit the behavior change needed to better meet the group’s expectation. The point is that introducing someone to the idea of getting involved in something that he or she might “enjoy” is not enough to secure the person’s acceptance into the group.

While brain injury rehabilitation often addresses cognitive 16 BRAIN INJURY PROFESSIONAL

and behavior changes, most interventions are limited to hospital or clinic settings and are made in preparation for discharge to home. Treatment is often limited to a short period of time and frequently falls short of facilitating a meaningful lifestyle for the individual and his or her family. For a small number of individuals, picking up the pieces of their lives and finding a new path is possible. For some, supports and opportunities disappear, leaving a life of loneliness and isolation. For others, the consequences are more severe and can include lives that are plagued with serious problems including incarceration, homelessness, substance abuse and victimization (Schofield et al., 2006; Slaughter et al., 2003). This is especially true for individuals who manifest significant behavioral problems after brain injury.

The kinds of behavior problems we often see after brain injury are just the kind of difficulties society is set up to prevent and protect itself from. Physical and verbal aggression, agitation and irritability, disinhibition, impulsivity and otherwise socially unacceptable conduct are called unwanted behaviors for a reason—and by definition they make community reentry especially difficult. In this article, treatment methods to address behavioral changes that include the individual and his/her community will be discussed, with an emphasis on selecting appropriate communities to reenter, providing appropriate levels of personal and professional support, and engendering and reinforcing natural supports.

Treatment methods to address behavioral changes Working with individuals with behavioral difficulties requires both skill and finesse, and in brain injury rehabilitation this is particularly true. Effective treatment begins with comprehensive transdisciplinary evaluation including information about the individual’s strengths, brain injury sequelae, pre-injury level of functioning, community and resources. Additionally, a functional assessment of problematic behaviors is critical (Benson Yody, et al., 2000). Treatment teams need to identify target behaviors, generate hypotheses about the purpose of unwanted behaviors, and develop interventions that address the behaviors not only within the rehabilitation setting but with an eye toward what will be realistic upon discharge. This means that in addition to their work within the rehab setting, teams need to physically look at discharge environments and support systems so that they may craft interventions that are culturally relevant, implementable, and realistic.

Questions to consider at assessment include: • Are the targeted behaviors the result of an individual’s skill deficits and resultant confusion or frustration?

• What does the individual gain when he/she engages in this behavior?

• Does the behavior seem to be out of the individual’s control altogether?

• Is the individual aware of/concerned about his/her behavior and the resulting consequences?

• Where are we heading—and who is going to support this individual and his/her goals? What does the individual want? What will bring meaning to his/her life?

Initial interventions to minimize problem behavior should occur on the antecedent side of behavior. Teams should consider the benefits of meaningful and well-established daily activity patterns, the minimization/elimination of provocative situations, and the inclusion of positive events/partners for leisure and communication as tools that assist individuals in refraining from problem behaviors (Ylvisaker, Jacobs, & Feeney, 2003). Teams also need to educate families and redesign environments to provide the best opportunity for success. Suggestions here include making recommendations regarding the level of stimuli (visits, noise, etc.), number and type of expected demands, the use of “breaks,” and even the use of visual prompts.

Additionally, teams need to identify the personal sources of social capital an individual possesses and work to expand those.

If an individual is funny, kind, or appreciative, how can the team further shape and hone those skills? Teaching individuals to recognize these sources of strength and reinforcing their power and value is critical. Treatment methods here include modeling, role-playing, group work, practice in real environments, and self evaluation.

Obviously, teams also need to look at the minimization of problematic behaviors. Some behaviors like aggression, explosiveness, and hyper-sexuality may never be tolerated in community settings. They are, therefore, critical to minimize through interventions on both the antecedent and consequence side (Corrigan & Bach, 2005).

It is impossible to discuss treatment interventions without mentioning awareness training. The relationship between selfawareness and treatment outcomes is reciprocal—and this is

particularly true of individuals with problematic behaviors (McGlynn, 1990). Components of effective awareness training include education about brain injury and its specific effects on an individual; real inclusion of the individual in treatment planning (are the team’s and the individual’s goals in line? Are individuals able to sit in on team meetings?); use of self-monitoring tools like checklists, group therapy, real-world practice and video-taping; and the practice of skills in real-life settings with natural consequences (DeHope & Finegan, 1999).

Selecting appropriate communities to reenter and providing appropriate levels of personal and professional support As treatment moves toward home and community, it is critical for teams to begin to identify the resources available to make the transition forward possible. We know that success does not depend solely on the transfer of skills and compensatory strategies. The building of natural supports, practice and modification of strategies in areas such as behavior, substance abuse, social skills and sexuality are crucial to the development of well-rounded and meaningful lives. For individuals with behavioral issues and limited social capability, we especially need to develop personal and professional circles of support to build social capital and connections.

As illustrated in our nature walk, this means more than offering leisure suggestions for a person. Selecting activities an individual will enjoy that are located within a reasonable distance to his or her home is insufficient for true integration. Teams need to consider the demands of the environment (antecedent control) as well as the value of the individual and his or her family’s social capital in the venue. The implicit demands of settings, the frequency with which they will be visited, and the timing of visits are all variables that can and should be manipulated to maximize success.

Once communities are identified, teams also need to identify the circles of support that will surround the individual to insure success. Coaches within the activity (professional, peer, family, community) are important and will ultimately provide the needed feedback, cueing, and buffering that is required when integrating someone with challenging behaviors. This can even be true of the most personal of relationships. Reentering a marriage or trying to date after a brain injury can be difficult; developing appropriate supports to a relationship, including couples counseling or relationship meetings, is another area teams should consider.

Building and using social capital: Engendering and reinforcing natural supports In addition to treating individuals, teams need to begin to include “acting on the community” as part of their role. This includes more specific work with immediate and extended families, peers/friends, community resources, neighbors, employers, and the like. Having someone on the “inside” with whom to negotiate can extend the likelihood that at least some of the costs of off-target behaviors will be mitigated and also allow for a communication link that may help the person self-monitor more efficiently.

Brain injury often results in the loss of friendships (Kersel et al., 2001; Koskinen, 1998), with social isolation and loneliness being the primary complaint of individuals with brain injury (Morton & Wehman, 1995). Some even posit that as much as Continued on page 20 BRAIN INJURY PROFESSIONAL

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Real Challenges, Real Outcomes, Real Life Learning Services programs are designed to provide specialized support for adults with brain injuries in a real life setting. All of our programs are equipped to maximize each resident’s quality of life as they take on the challenges of a brain injury. Our approach supports outcomes by offering individuals the tools necessary to live life on their terms.

•

Neurobehavioral Rehabilitation

•

Residential Rehabilitation

•

Supported Living

•

Therapeutic Day Activities

To learn more about how we can make a difference, call 888.419.9955 or visit learningservices.com.

Locations Nationwide

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Real Challenges, Real Outcomes, Real Life Learning Services’s programs are designed to provide specialized support for adults with brain injuries in a real life setting. All of our programs are equipped to maximize each resident’s quality of life as they take on the challenges of a brain injury. Our approach supports outcomes by offering individuals the tools necessary to live life on their terms.

•

Neurobehavioral Rehabilitation

•

Residential Rehabilitation

•

Supported Living

•

Therapeutic Day Activities

To learn more about our programs nationwide, call 888.419.9955, or visit learningservices.com.

BRAIN INJURY PROFESSIONAL

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Contra-Social... Continued from page 17

90% of an individual’s personal network will have fallen away within two years of injury. As professionals, we can do some things to help combat this. The earlier we help families to begin this process the better. Keeping those who are interested in the condition of an individual informed and involved is of great importance. This maintains the bond developed and allows friends and others to realize the need for their continued support and friendship. Many social network tools available today include personal websites that coordinate the distribution of information, offer the opportunity to blog, and provide a forum for well wishes and offers of practical support/assistance. www.caringbridge.org, www.carepages.com, www.carecalendar.org, and www.lotsahelpinghands.org are all examples.

Sometimes the biggest challenge is convincing a family that it is worth the effort to accept offers of help. Informing families that research indicates that individuals with families with welldeveloped social networks fare better and have far less emotional distress than others may convince loved ones to reach out to their community for assistance (Vangel et al., 2011). Another natural extension of an individual and his/her family’s community may be disability-relevant communities like support groups, special classes (Rediscover U), “clubhouse” programs, and advocacy groups. Social peer networking, whereby individuals are paired with other individuals as mentors to facilitate community involvement, is also worth consideration (Struchen et al., 2011). While these outlets may not work for everyone, individuals and their families may find meaning and community in these settings.

Similarly, teams should think about other elements that may be used in order to increase capital. For example, schoolaged kids with disabilities often gain acceptance when they are the holder of an iPad or other “cool” piece of equipment that helps them adapt to their disability. Service dogs are another example of this kind of capital. Individuals’ associations/affiliations and connections are still another source of capital, as are their interests and willingness to associate with the identified audience. An individual’s passion for a cause or intense interest in/knowledge of a subject may neutralize some of the “costs” of his or her behavior. Practiced scripts can also help people gain the acceptance of a group, and along with physical contributions, like volunteer work, the person may gain considerable traction.

Conclusion Assisting individuals with brain injury and behavioral difficulties in their quest to establish meaningful and satisfying lives is complicated. It requires creativity, forethought, perseverance, and expertise. The challenges some individuals present with may limit their ability to participate in community settings significantly. However, we must remember that family, social pursuits, social networks, and free time are the greatest motivators for living. In addition to traditional methods of treatment rehabilitation professionals need to look beyond “changing” the individual and move toward influencing society to accept and accommodate all people. Still, with individuals with complex behavioral issues, the challenge is great—and sometimes may be impossible. One way for teams to conceptualize the idea of intervention and social capital may be a formula of sorts by 20 BRAIN INJURY PROFESSIONAL

which the “cost” of an individual (as measured by his or her contra-societal behaviors) must be counterbalanced by a measure of social (or other) capital.

Hopefully, future research can be conducted to investigate the utility of interventions designed to increase social capital for individuals with challenging behaviors. An analysis of the variables on both the “cost” and value side of the formula would be of particular interest to those attempting to facilitate true community reentry.

REFERENCEs

Benson Yody, B., Schaub, C., Conway, J. et al. Applied behavior management and acquired brain injury: Approaches and assessment. Journal of Head Trauma Rehabilitation 15: 1041-1060, 2001.

Corrigan, P.W. & Bach, P.A. Behavioral treatment. In: Textbook of traumatic brain injury. Silver, J.M., McAllister, T.W., & Yudofsky, S.C. (Eds.) American Psychiatric Publishing, Inc. :Washington, D.C., Pages 661-678, 2005.

De Hope, E. & Finegan, J. The self-determination model: An approach to develop awareness for individuals of traumatic brain injury. NeuroRehabilitation, 13: 3-12, 1999.

Kersel, D.A., Marsh, N.V., Havill, J.H., & Sleigh, J.W. Psychosocial functioning during the year following severe traumatic brain injury. Brain Injury, 15: 499-506, 2001.

Koskinen, S. Quality of life 10 years after a very severe traumatic brain injury (TBI): The perspective of the injured and the closest relative. . Brain Injury, 12: 631-648, 1998.

McGlynn, S.M. Behavioral approaches to neuropsychological rehabilitation. Psychology Bulletin 108: 420-441, 1990.

Morton, M. and Wehman, P. Psychosocial and emotional sequelae of individuals with Traumatic Brain Injury: A literature review and recommendations. Brain Injury, 9 (1): 81-92, 1995.

Schofield, P.W., Butler, T.G., Hollis, S.J., et al. Traumatic brain injury among Australian prisoners: Rates, recurrence, and sequelae. Brain Injury, 20(5): 499-506, 2006.

Slaughter, B., Fann, J.R., & Ehde, D. Traumatic brain injury in a county jail population: prevalence, neuropsychological functioning, and psychiatric disorders. Brain Injury, 17(9): 731-741, 2003.

Struchen, M.A., Davis, L.C., Bogaards, J.A., Hudler-Hull, et al. Making connections after brain injury: Development and evaluation of a social peer-mentoring program for persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 26(1): 4-19, 2011.

Vangel, S.J., Rapport, L.J., & Hanks, R.A. Effects of family and caregiver psychosocial functioning on outcomes in persons with traumatic brain injury. Journal of Head Trauma Rehabilitation, 26 (1): 20-29, 2011.

Ylvisaker, M., Jacobs, H., & Feeney, T. Positive supports for people who experience behavioral and cognitive disability after brain injury. Journal of Head Trauma Rehabilitation 18 (1):7-32, 2003.

ABOUT THE AUTHORs

David Krych is currently the VP of strategic Development at ReMed Recovery Care Centers. He earned his graduate degree in Communication Disorders and Sciences in 1979 at Southern Illinois University (SIU). He co-founded the Centre for Neuro Skills, a post-acute brain injury facility with programs in California and Texas. David received the Distinguished Alumni Award from SIU for contributions to the field of brain injury rehabilitation. He was also an adjunct professor at SIU. He has edited and contributed to books and articles on brain injury and has presented extensively in the US and abroad on a variety of brain injury topics. He is active in The American Congress of Rehabilitation Medicine; The American Speech Language and Hearing Association and The Brain Injury Association of PA. Joanne Finegan is the CEO and Managing Partner of ReMed Recovery Care Centers, a rehabilitation and long-term care provider for people with acquired brain injury. She leads ReMed utilizing her skills as a Certified Therapeutic Recreation Specialist, her Masters Degree in Administration (West Chester University, 1990) and her years of experience specializing in brain injury treatment. She has worked continuously on educating others on the impact and lifelong effects of brain injury and utilizes ReMed’s “real life rehabilitation” model as her foundation. Finegan has served on the Commission on Accreditation of Rehabilitation Facilities (CARF) for many years as a board member, trustee and Chairman of the Board in 2004. She has also served as the Chairman of the Board of the National Council on Therapeutic Recreation Certification and has been honored by the American Therapeutic Recreation Association (ATRS) as a Distinguished Fellow, the organization’s highest distinction, in 2005. During 2010, she was presented the Distinguished Alumni Service Award by the Penn State University’s College of Health and Human Development and is the President of a non-profit, Council on Brain Injury (CoBI). Finegan is also an Advisory Board member at Penn State’s Brandywine Campus.

Restore-Ragland

Restore-Roswell

Restore-Lilburn

Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems.

Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

www.restorehealthgroup.com 800-437-7972 ext 8251

Canoeing at Vinland’s main campus in Loretto, Minnesota

drug & alcohol treatment for adults with disabilities Vinland Center provides drug and alcohol treatment for adults with cognitive disabilities, including traumatic brain injury, fetal alcohol spectrum disorder and learning disabilities. We make all possible accommodations for cognitive deficits and individual learning styles.

Located in Loretto, Minnesota — just 20 miles west of Minneapolis.

(763)479-3555 • VinlandCenter.org BRAIN INJURY PROFESSIONAL

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Life, Liberty and the Pursuit of Happiness: The Applications of Culture Change to Improve Long-term Care after Brain Injury

by David Seaton

In the 1890s philosopher William James stated that “No more fiendish punishment could be devised, were such a thing physically possible, than that one should be turned loose in society and remain absolutely unnoticed”(thinkexist.com). While it is doubtful he was referring to individuals with brain injuries, this is often the outcome of someone with a disability as he or she struggles to reclaim a place with his or her friends and family, his or her community, and society.

Humans are social animals. One only has to look at the recent explosion of electronic communication, such as cell phones and Facebook, as proof. Currently, there are approximately 4 billion cell phones, and 685,559,620 Facebook users socially networking more than 383 million hours every day (Ask.com). So, what is it that drives people to be connected with others? Is it a sense of identity when we share about common interests, politics, and religion? Is it companionship and a sense of purpose, meaning, belonging and well-being that we desire? Well, it’s all these factors and many more.

Throughout history, individuals with disabilities have often been seen as incapable of making independent decisions and must rely upon systems and structures of support in order to ensure their safety. This misguided belief has led to a diminished value and opportunity for normal social inclusion by pushing individuals with disabilities to the margins of society.

In the video, What is Self-Determination?, John O’Brien discusses how current service systems tend to enforce patterns that keep people who receive services experiencing the “three D’s”: • Different (not one of us); • Disconnected (not part of our communities or culture); • Dependent (kept or managed) 22 BRAIN INJURY PROFESSIONAL

And the need to move support to people to experience the “three I’s”: • Individual (like you and me); • Included (like you and me); • Interdependent (like you and me).

Self-Determination grew out of the independent living and disabilities rights movements that were begun during the 1960s when individuals began to speak out against the commonly held belief that the condition of having a disability was an illness that was treatable only through on-going interventions by experts.

Self-determination is, at its core, designed to transform societal perceptions, prejudices, and acceptance about individuals with disabilities through relentless advocacy efforts that promote realization that all people want to experience life, liberty and the pursuit of happiness, and that self-determination is both a basic human and civil rights issue.

During the 1990s, notable proponents of self-determination, such as the Robert Woods Johnson Foundation (RJWF), forged four governing principles that serve as the framework for selfadvocates as they speak out across the country for the right to enjoy a life that is self-determined. The Four Robert Wood Johnson Principles: • Freedom: the ability to plan a life with supports, rather than purchase a program.

• Authority: the ability to control a certain sum of dollars to purchase supports.

• Responsibility: accepting a role in the community through competitive employment, organizational affiliations, and general caring for others in the community

Brain injury has been well chronicled to predominately afflict a younger population of individuals who might be expected to live another 30, 40, or 50 years post injury. Unfortunately, many of these young adults quickly experience being on the social fringes of society as friends, siblings, and colleagues go on with their lives and the person with a brain injury begins feeling left behind and left out. Brain injury rehabilitation quickly evolves from a treatment model of care to a social model of support as the person struggles to regain a sense of purpose, dignity, esteem, belonging and connection to the larger community.

and authorities in the type of service and support that the person may want or need in order to get on with the business of life.

This also implies that the services and supports that the person requests and receives are uniquely designed to be responsive to individual needs and desires. Most service systems are not set up to provide the level of intensity required to customize services. For organizations to move away from system-centered care toward supports and services that are more person-centered or person-driven, shifts in priorities need to happen. The culture, leadership, organizational structure and design must align with the values and principles of person-centered work. System reform relies upon the design of services that are built upon the objective to support people toward community participation, to have valued social roles, to recognize and appreciate individual contributions, and to have real opportunities to make choices.

Culture Change

A Comparison of Cultures

•

and accountability for spending public dollars in life enhancing ways.

Support: through use of resources, arranging formal and informal supports to live within the community.

“The challenge is to create a Human Habitat where people of all ages come together day after day — eager and able to Thrive, not just Survive.”

Dr. Bill Thomas, Founder of Eden Alternative

Culture Change is a national movement that challenges our beliefs and prejudices about long-term care for individuals with brain injuries and other cognitive disabilities. Culture Change seeks to transform long-term care by promoting the continued personal growth and well-being of the individuals who both live and work in the setting. This “person-centered” approach is in stark contrast to the traditional custodial, medical or treatment model of longterm care, which is usually “system-centered” and often driven by excess rules, policies and procedures, risk management, and staffing efficiencies. While there is no official definition of personcentered care, it’s generally defined as a comprehensive and ongoing process of transforming the traditional patriarchal long-term culture into a nurturing, empowering one that promotes choice, purpose and meaning, and supports well-being for individuals in a relationship-based, home environment. A person-centered approach seeks to create a long-term living environment that the person regards as home, not just homelike. A simple yet poignant saying that captures person-centered support is “Not about Me without Me.” This statement is so basic, but yet in our clinically oriented long-term care model, it’s often not implemented. Quite often the person receiving the services is not even included in the meetings about him or her, as if it’s a secret plan we are going to do to him or her. This approach is a mistake. Any planning we do about the person should include the person.

Many, if not most, support services for people with disabilities have been traditionally organized to respond to entities that are far removed from the people for whom the services and supports were originally intended. Program structures, resource use and allocations, job descriptions, and outcome measurements are crafted based on external controls, such as funding sources, political agendas, compliance, etc., leading to a domino effect of establishing cost and control centers that serve the system itself rather than serving the unique interest and needs of the individuals who are relying upon the system to be responsive to them.

“System-centered” services are incompatible with providing person-centered services. Person-centered services assume that the “driver” of the services is the person who is making the request for services. It assumes that the person and those who know and care best about the person are the foremost experts

An institution is not about the size of a facility, but about an organization’s mindset being based primarily on rules, regulatable 1

Institutional Directed Care

Staff provides standardized “treatments” based upon medical/clinical diagnosis.

Schedules and routines are designed by the institution and staff, and residents must comply.

Work is task-oriented and staff rotates assignments. As long as staff know how to perform a task, they can perform it “on any patient” in the facility.

Decision making is centralized.

There is a hospital/clinical treatment environment.

Structured activities are goal directed and driven by professional clinical staff.

There is a sense of isolation, helplessness and loneliness.

Resident-Directed Culture Staff enters into a caregiving relationship based upon individualized care needs.

Residents and staff design schedules that reflect their personal needs and desires.

Work is relationship-centered, and staff has consistent assignments. Staff brings their personal knowledge of residents into the caregiving process.

Decision making is as close to the resident as possible.

The environment reflects the comforts of home.

Spontaneous activities are available.

There is a sense of community and belonging.

tions, efficiencies, and avoiding risks. The chart below compares the differences between long-term Institutional vs. Resident Directed Cultures.

In the early 1990s, Dr. Bill Thomas, a Harvard educated physician, was making his rounds at a long-term care facility in upstate New York when he had an encounter with a resident who affected him deeply. Pulling Dr. Thomas close, this frail, blue-eyed woman shared with him in a desperate whisper her profound sense of loneliness. This experience inspired Dr. Thomas to dedicate his efforts to create a better world for people in long-term care, one in which the plagues of loneliness, helplessness and boredom were addressed head-on and not simply accepted as the status quo. In 1994, Eden Alternative was born and today is a world-wide leader in the Culture Change movement. Eden has shown how vibrant “Human Habitat” environments that offer variety and spontaneity, companionship, social capital, and opportunities to give as well as receive support can succeed where pills and therapies fail.

Dr. Thomas received a grant from the New York Department of Health to conduct a 3-year pilot to study the effects BRAIN INJURY PROFESSIONAL

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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 residents, 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 Texas Long Term Care Institute subsequently performed a larger study to determine if Dr. Thomas’ results were replicable. The results of the study revealed additional significant outcomes including a 60% decrease in behavioral incidents, a 48% decrease in staff absenteeism, and an 11% decrease in employee injuries (Edenalt.org).

Dr. Thomas’ Eden philosophy is based on basic Culture Change principles. These principles rest on the holistic premises that, given the proper environmental supports, opportunities and continued relationships, the person with the disability is capable of continued personal growth and development despite physical, cognitive or emotional limitations. While recognizing that persons requiring care have medical needs and may have physical and cognitive limitations, the overarching thrust of the 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.

John O’Brien introduced five valued experiences and accomplishments as a means to explore the nature of interacting with and/or providing services and support to individuals with disabilities. The “O’Brien Principles” highlight the need to support people who have disability labels toward experiences that allow for the: • Sharing of and in ordinary places • Growing in relationships • Experience of respect found in valued social roles • Opportunity to make contributions • Opportunity to make choices While there is not a specific model for Culture Change, there are over-arching philosophies and principles steering resident care, organizational practices and the physical environment.

They include: • Close relationships among staff, residents and community • Empowered staff to make decisions with the resident • Collaborative decision making • Choice and risk • Dignity and respect • A home-like environment • Recognition of the potential for growth • Appreciation for the uniqueness of each individual The Culture Change movement has historically focused on transforming nursing homes and other long-term care for elders. With a grant from the Seaton Foundation, a demonstration project was completed to determine the applicability and effectiveness of utilizing the principles and philosophies of Culture Change with the more than 20 million younger individuals with disabilities in the U.S. The project resulted in the development of Eden LifeLong Living (ELL), an affiliated national training program of Eden 24 BRAIN INJURY PROFESSIONAL

Alternatives, and subsequently created a broader application of the Culture Change movement to include individuals with disabilities. ELL is based on the belief that individuals with disabilities are capable of continued personal growth, regardless of their cognitive or mental abilities, within a humanistic, holistic environment that offers adequate supports and opportunities.

The ELL philosophy demonstrates how a person-centered environment, coupled with empowered direct support staff, can promote well-being and a thriving human habitat for individuals with cognitive disabilities whose lives have been interrupted by disability but still have a full life of opportunity in front of them.

By incorporating Culture Change principles and practices, organizations can begin the journey of transforming traditional long-term care programs into more vibrant and joyful living environments for employees and residents alike. The elimination of restrictive rules, practices and policies creates more time for individuals to interact, pursue both personal and collective interests, and build a stronger sense of community. Culture Change studies have documented benefits that include a significant reduction in employee absenteeism and turnover and decreased dependence on psychoactive medication. As a result of these changes, residents reported experiencing a greater degree of personal satisfaction and fulfillment. Culture Change, when applied in a gradual and systematic manner, can greatly improve the lives of those living and working in long-term living environments.

Conclusion

“Be the change you wish to see in the world” Simple and eloquent, Gandhi’s words speak to the power that each one of us has to make a difference. And by joining together in our efforts to effect change in the lives of the most vulnerable and frail in our society, we all benefit. It takes courage and commitment to reject the status quo and suggest that there may be a better way to assist others in need. When it comes to providing support and services for individuals with brain injuries, it is our responsibility to question our current models of long-term care and ask ourselves, how can we do better? To do better, we must recognize that we are all social-beings and the individuals we work with want the same things that we all want in our lives — purpose, meaning, dignity, respect, opportunities for growth, relationships, a sense of belonging and community. If we can begin to take these steps toward addressing these fundamental humanistic and holistic issues, we can drastically improve the culture of longterm care provided to individuals in need of support. on-line References 1. Thinkexist.com 2. Ask.com 3. Edenalt.org

About the Author

David Seaton is a graduate of the University of Texas with a degree in Psychology, and completed his graduate studies at the University of Texas Health Science Center in Rehabilitation Counseling. David is President of the Seaton Foundation, Founder/CEO of Eden LifeLong Living, and Chair of the Texas Culture Change Coalition. He is the Owner/CEO of LiveOak Living Communities, providing lifelong residential programs in San Marcos and Austin, Texas for adults with brain injuries and other cognitive disabilities. David has worked with adults with cognitive disabilities for more than 25 years and is a national leader in advancing the Culture Change movement for individuals with disabilities.

websites of note

If the articles and ideas in this issue have sparked your interest in the following websites would be useful tools as you begin to think about how to platform people with disabilities to be valued and respected members of the community.

CULTURE CHANGE Picker Institute www.pickerinstitute.org Planetree www.planetree.org Action Pact, Inc. www.culturechangenow.com Eden LifeLong Living www.EdenLifeLongLiving.org The Eden Alternative www.edenalt.org The Green House Project www.thegreenhouseproject.org Pioneer Network www.pioneernetwork.net SOCIAL CAPITAL Journal of Vocational Rehabilitation http://iospress.metapress.com/content/p74g5572k2x4/ Social Capital Blog http://socialcapital.wordpress.com Saguaro Seminar www.hks.harvard.edu/saguaro Better Together www.bettertogether.org TED: Ideas Worth Spreading www.ted.com (search David Brooks and Simon Sinek) Al Condeluci www.alcondeluci.com Community Building Asset-Based Community Development Institute www.abcdinstitute.org Abundant Community www.abundantcommunity.com BRAIN INJURY PROFESSIONAL

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Social Capital, Rehabilitation Professionals and Brain Injury: Independence to Interdependence

by Jill Koppang, RN, CRRN, M.Ed, and Patti Flaherty, Executive Director CONNECT Communities

What is Social Capital?

Social capital is about the relationships we have in our lives.

We know both intuitively and experientially that relationships are good for us. We are healthier and happier and live longer and richer lives. Social capital is much more than just being surrounded by family and friends. It includes formal and informal relationships, acquaintances, neighbors and the lady passing us coffee through the drive-through window. We all have varying and individual needs about the number and types of relationships we want and need in our lives. If we are lucky enough to live an “ordinary” life where our basic needs are met and we have the ability to control our own lives, we can maintain and build relationships based on our interests and access to our local and virtual communities.

A common misconception about social capital is that it is just about making friends, but in reality it is so much more than that. In our daily lives, those of us without disability issues par26 BRAIN INJURY PROFESSIONAL

ticipate in a number of roles, including being family members, friends, neighbors, and citizens. Our roles and contributions to society define us. Each of our roles puts us in touch with others in some way. Those connections to others are the collateral that create social capital.

In this article, we challenge rehabilitation professionals to consider the impact that traditional rehabilitation practices may have on a person with a brain injury’s ability to maintain and build social capital. By considering our own experiences with social capital, we better understand how our interventions can actually prevent the people we serve from building new lives rich in relationships and connections. With this knowledge, we choose to change the way we practice.

Components of Social Capital

Three things come to mind when considering social capital and acquired brain injury (ABI): freedom, choice and risk. Freedom

is essentially being able to live the life you want with the people you choose in the place of your choosing. Choice is the power, right or liberty to choose from options. Risk is the possibility of suffering harm, loss or danger. Those of us living “ordinary” lives exercise freedom and choice, and determine what levels of risk we find tolerable on a daily basis. Exercising these options allows us to self-direct our lives. We have opportunities to make connections with others and more opportunities come from those connections. We find places to live, transportation, jobs and social activities that bring us joy and satisfaction, which make us healthier and happier and live longer, better lives.

limited public and accessible transportation options. Most compelling and heartbreaking of all is that the average number of relationships in the life of a person with a disability is about 30 as compared to typically over 150 relationships for most of us.

This is not to say that our roles as rehabilitation professionals have no value. We bring much needed services to people recovering from catastrophic illnesses and injuries. People who are early in the ABI experience want and need our professional expertise, and whatever can be “fixed” should certainly be fixed. As the person with ABI moves through the continuum, the “broken” parts become strikingly obvious to the person with brain injury and to his or her loved ones. As the person moves through Brain Injury and Social Capital the continuum of health and rehabilitation services, maintainBrain injury has the power to destroy our freedom, choice and ing and building social capital becomes increasingly important. risk-taking by changing how we think and function in life. Brain Going back to the earlier question: What if we, as rehabilitainjury steals identities and can drive off existing relationships, tion professionals, consider that in some way we contributed thereby limiting new opportunities in our lives. It becomes a vi- to the poor outcomes experienced by many people with ABI cious circle resulting in increased isolation and limitations. in regards to their quality of life and relationships? Although As professionals, we intellectually understand the social iso- unintentional, this is in fact true. However, with a shift in our lation that often occurs after ABI. We see the loneliness and professional perspectives and clinical approaches, professionals confusion that become part of the can change these outcomes for lives of the people with ABI and A huge opportunity is missed for professionals the better by thinking and acttheir networks. Flaherty (2011) more socially. Thinking and if we do not listen and learn from the real brain ing notes that people living with ABI acting more socially will support often experience a loss of their so- injury experts: those who live it daily. Spending the incorporation of social capicial, professional and personal roles. time in these forums as a student rather than as tal into our practices and service There can be a loss of identity, and an expert opens new possibilities of how we might delivery. Thinking socially creates people with ABI must learn new more opportunities. transform the way ABI services are provided. ways of being. As a result, they are Given what we know about twice as likely to be depressed and losses experienced from ABI, it abuse drugs and alcohol. There is a tendency to withdraw so- behooves us to use our professional expertise in whatever ways cially and have difficulty maintaining and building relation- possible to prevent the loss of existing relationships, as well as ships. As social capital diminishes, opportunities in all life do- supporting the development of new relationships. We suspect mains diminish, creating a vicious cycle of further isolation and that rehabilitation professionals might question if it is their role decreased opportunities. to address social capital in a holistic way that includes weaving it into every discipline’s goals and interventions at every Traditional Rehabilitation Framework point of the continuum. We suggest that ignoring social capital versus Interdependence Framework creates ever-increasing problems for people with ABI and their Traditional rehabilitation and health services focus on deficits, families. deficiencies and illness. The way services are delivered often isolates the person with ABI from community. In our roles as Independence to Interdependence experts we relegate the person with ABI to a prescribed lifestyle ABI rehabilitation focuses on assisting the person in becoming based on what we have learned from the experiences of those as independent as possible in functional activities. Rehabilitawho have gone before within our systems of support. We take tion programs are designed around the core belief that a perthose experiences and build the evidence-based best practices son must be as “normal” as possible to fit into and function that guide our programs and services whenever possible. Future in society. Rehabilitation experts, the person with brain injury planning is based on past experiences created within existing and the community at large often hold true to this belief. Independence is the target outcome of ABI rehabilitation and each systems.

What if we, as professionals, consider that in some way we goal achieved is celebrated. Condeluci (1998) posits that having contributed to the poor outcomes experienced by many people independence as the end goal of rehabilitation can actually lead with ABI in regards to their quality of life and relationships? to further isolation and disconnection, and suggests that interWhat if poor outcomes were systems based rather than the out- dependence should be the goal of all our services and supports.

Interdependence is described as being “about relationships that come of the brain injury?

We can ask how traditional rehabilitation models have suc- lead to mutual acceptance and respect” (Condeluci, 1998, p 89). ceeded so far in helping people with disabilities build good lives An interdependence paradigm shifts the focus from deficits to and become part of the community. Condeluci (2008) notes capacities, stresses relationships and is driven by the person with that 75% of people with disabilities are unemployed, under- ABI. Traditionally, persons with disabilities are considered to be employed or idle; 7% own their own homes compared to 71% the problem and it is somehow their fault when they are unable of the typical adult population; and most communities have to find places to live, get jobs, or raise families. If they were BRAIN INJURY PROFESSIONAL

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“normal” they would be able to fit in and achieve those goals. If we apply this “model of blame” to our professional practices, we might consider how many times we wanted to do something differently in our practices, something creative that we knew would benefit the people we work with, only to be hamstrung by system obstacles and limitations. Were we the problem or was the system the problem?

Which Rehabilitation Discipline Owns Social Capital?

The quick answer is that we all own social capital! We own it on both personal and professional levels. We are all part of families, friends and neighborhoods. The prevalent belief system that people with disabilities can’t be part of the community in the same way as “ordinary” people prevents us from considering alternative possibilities. We take that belief into our practices, often being unaware of how it affects the way we provide services and supports. The ways we incorporate social capital into our daily practices will vary across the continuum of care and services, but it should be present in everything we do.

Making Social Capital Part of Daily Practice

Listening and Learning How can rehabilitation professionals and providers increase awareness of a person’s existing social capital and become part of the plan to maintain existing networks and provide opportunities to build new networks? How can we shift to a more social context of service delivery to ensure that people with ABI have frequent opportunities to figure out who they are in their new way of being and how things are different for them? Incorporating social capital into our daily practice requires shifting from a primarily clinical mindset to a more social way of thinking and being. A more social way of being includes being aware of how our practices can contribute to maintaining or inadvertently causing the loss of the person’s freedom, choice, and right to take risks and have relationships. Imagine what might happen if these discussions took place early in our professional training? As we understand the enormous importance and benefit of social capital for all of us, our conversations begin changing and we begin to challenge our traditional practices. As the conversations start taking place, small changes start happening and we recognize the value of social capital for ourselves as well as for the people we serve. It becomes a topic in our orientation and education and drives service delivery and program planning.

For professionals involved in the acute phase of ABI, supporting persons with ABI and their families through the initial shell-shocked phase is an important component of maintaining the existing social network. This is where a tool such as a secure and individualized social network (TYZE.com) might be set up to keep the people in a person’s life included and informed of how they can help. As the person with ABI moves through the continuum of services, the realization and adjustment that ABI has touched and changed every part of his or her life becomes reality. Existing relationships begin changing and significant others struggle to figure out who this new person with a brain injury is and how it affects their relationships. The person with ABI no longer recognizes him/herself in this new body and mind. Our professional role becomes one of listening and responding to what the person with ABI is saying he or she wants for his or her life. The biggest challenge for professionals 28 BRAIN INJURY PROFESSIONAL

is to let go of beliefs, based on expert experiences, that this person will never walk, talk, work, play, drive, marry, or have sex, money or friends. Because we so strongly believe these things and “know” them to be true, we design programs and supports based on that belief. We essentially close doors to people that may have remained open.

Rehabilitation professionals often assume that ABI support groups, chat rooms and narratives about the experience of ABI are for people who have personally experienced brain injury so that they can see they are not alone and network with people with similar experiences. A huge opportunity is missed for professionals if we do not listen and learn from the real brain injury experts: those who live it daily. Spending time in these forums as a student rather than as an expert opens new possibilities of how we might transform the way ABI services are provided.

People with ABI often tell us what they need and want, yet we are trapped in belief and service systems that force us to stick to the menu; no a la carte services here.

Why Consider Change?

People continue to learn, grow and change throughout their lives. When we challenge what we are doing, we create tensions that often lead to creativity and new solutions for old problems. If we think it through, social capital is anchored strongly in common sense and the Golden Rule. That somehow seems unpalatable in the world of professionals and experts. Nothing we do can be that simple…or can it?

Social Capital is here to stay. Communities of leadership are developing in many of the organizations represented in this journal. Flaherty (2008) notes that “leadership is about relationships between and among many people, about a strong community as well as reciprocity between group members.” As we all connect around the topics of social capital represented in this journal, we spread the word and hope to make lives better by understanding and contributing to the body of knowledge.

References 1.

2.

3.

4.

Flaherty, P. Presentation at Okanagan Brain Injury Conference (2011) Condeluci, A. Presentation at Okanagan Brain Injury Conference (2008) Condeluci, A. Interdependence: The route to community. 2nd Edition. Boca Raton, London, New York, Washington D.C. St. Lucie Press (1998) Flaherty, P., Social capital and its relevance in brain injury rehabilitation services. Journal of Vocational Rehabilitation, Volume 29, Number 3, 2008

About the Authors

Jill Koppang has been involved in the field of brain injury for over twenty-five years, providing services across the continuum of care in both the United States and Canada. Her interest in social capital has been growing over the last few years and she is actively working to change her professional practice to a more social model of service delivery. Jill grew up in Louisiana where she completed her Registered Nursing certification.

She now lives with her husband in Abbotsford, British Columbia. Since moving to Canada Jill completed her Master of Education in Community Rehabilitation and Disability Studies at the University of Calgary.

Patti Flaherty lives in British Columbia, Canada and is the Executive Director of CONNECT Communities. She has been working with people with disability and in the field of rehabilitation and health services for over 20 years. Patti has an undergraduate degree in Physical Education and a Master of Education from Brock University in St. Catharine’s, Ontario. Patti has also completed the Executive Health Leadership Program from the Rotman School of Business at the University of Toronto.

book review The Abundant Community Reviewed by Jeffrey Fromknecht, MSW The Abundant Community is a must read for anyone that believes that people with disabilities belong in the community. In this book, co-authors John McKnight and Peter Block draw on their experiences in community organizing and organizational leadership to develop their thesis on how best to support people and communities in reaching their full potential. This thesis is born out of experience and research that demonstrates that institutions and human service systems have limits. This is by no way a criticism, just a realization. Surely, this fact can resonate with those of us who work in the system. Despite the extensive array of supports and services, people with disabilities, brain injury or otherwise struggle to find jobs and housing and to build relationships in the community. The Abundant Community suggests that the route to success for all people starts in community.

The book thoroughly explores the meaning of “community.” The book explains that communities have three major properties: gifts, associations, and hospitality. Each is related and feeds off the other two, McKnight explains in the book, that each is needed to create the “capacities of an abundant community.” These chapters provide a primer for anyone attempting to understand the importance of social capital.

While much of the book is admittedly on the limits of systems in keeping us safe and secure, the book does offer some poignant recommendations for organizations that wish to “support the local community’s effort to nurture its gifts, welcome strangers, and strengthen associational life.” While there is no one way to do this, the book suggests a number of things to keep in mind, such as understanding that people’s gifts are more valuable than their deficiencies. Moreover, the book echoes the theme of this special edition by pointing out the importance of social capital—“the community grows out of ever-increasing cooperative local relationships and connections.” Change happens in the street, in the neighborhoods fueled by the power and energy of people’s social capital. Pick up this book if you are interested in tapping into this power.

Jeff Fromknecht graduated from Allegheny College in 2004, earning a Bachelors of Science degree in Psychology with a minor in biology. In 2007, he earned his Master’s of Social Work degree in Community Organizing and Social Administration, from the University of Pittsburgh School Of Social Work. During this time, he was a Fellow with the University, Community, Leaders, and Individuals with Disabilities (UCLID) Center, involved in researching social capital and its effects on health and well-being. The UCLID Center is one of 34 LEND Programs, a national interdisciplinary leadership training programs for graduate students federally funded through the Maternal Child Health Bureau. Currently, Jeff works for UCP/CLASS of Pittsburgh in the Research and Development division and is a graduate student at Duquesne University School of Law. BRAIN INJURY PROFESSIONAL

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bip expert interview John McKnight John McKnight is the co-director of the Asset-Based Community Development (ABCD) Institute located at the School of Education and Social Policy at Northwestern University. Challenging the traditional approach to solving urban problems, which focuses service providers and funding agencies on the needs and deficiencies of neighborhoods, ABCD Institute has demonstrated that community assets are key building blocks in sustainable urban and rural community revitalization efforts. Additionally, McKnight has conducted his own research for over three decades examining the social service delivery systems, health policy, the inclusion of marginalized people and institutional racism. He currently contributes to ABCD Institute efforts and continues his own research and community work. Contact John at jlmabcd@aol.com.

Your book, The Abundant Community, suggests that there are limits on what institutions can accomplish, and that real community change starts with families and communities. How might this information be used by brain injury professionals to promote government-supported human service programs for people with brain injuries?

I think it’s important to recognize that the resources society has to make things better come in two forms. One is resources that you have to pay for, the one delivered by governments, by not-for-profits, or by businesses.

The other part of society is where the resources don’t have to be paid for. Our book, Abundant Community, is about that part of society where the resources don’t have to be paid for. Our way of defining that space is to say it is where citizens are operating together and that the primary resources are the gifts, abilities and skills of local citizens and the associations, groups and, organizations they create. A lot of the well being of society is generated outside of these paid institutional services.

And so if we want to expand the capacity of institutions, they have to understand the nature of the citizens’ space; about people’s gifts, abilities and talents; and about their associations, clubs, and groups, where they come together to magnify their talents to get things done, rather than their needs, problems and deficits. So it’s the awareness of the importance of the non-paid citizens’ space and how it works that would allow a good professional to extend his or her purposes and goals.

We know that people with brain injuries often lose important relationships after their injuries. How might this information, combined with the thesis of your book, be used to impact brain injury rehabilitation?

By making a rule that they [brain injury professionals] never ever deal with a client where they only find out about his or her problems and needs.

Rehabilitation professionals need to find out about people’s gifts, their interests, and their capacities. The key to entering into community relationships is to focus on what people have to offer and contribute. Our work has demonstrated over and over again that when people are about the business of connecting people who have been labeled in the community life, the key is that the connection is made around their gifts and talents.

Often, the problem with the professional field is that it starts with labels that are about needs and deficits. So I do not think you get people with brain injuries connected in the community. Who you get connected in the 30 BRAIN INJURY PROFESSIONAL

community is Charles who, because he reads so much, knows an incredible amount about American history, and there are four or five kids in the block who aren’t doing well in that field. So they are connected to him because he has something to offer. Everybody has something to offer.

When thinking about the research utilized in your book, what professional actions should be promoted to best serve vulnerable people?

I’m answering in terms of vulnerable people being connected in community life. There are two things that professionals who have been effective have done. They are focusing on what these people, who have been labeled, have in terms of interests and abilities that could be connective tissue to the community. The second thing is that they have to understand that it is in what we call the associational space in the community where the connections are most easily and effectively made. Every local neighborhood, every town has hundreds of associations that people belong to.

And if you understand that space many, many of those associations are prepared to welcome somebody who has a gift or a common interest into community life. Our research shows that the welcome mat is there when you match capacities with the associational purposes.

What is your next book project?

Well the project that I’m involved in right now is a research project that will produce a guidebook. It will be a guidebook on how to discover at a very local level—on a block—all the gifts, the skills, the passions and the desire to teach that each person on the block has, and then how to begin to connect people across those interests, abilities and gifts, which is how almost all communities that do not work with money work. They are places where people bring together the things they have and jointly share them in order to enjoy each other, to create something jointly together, or to achieve some goal in the larger community. So we’re very interested in finding out from every single person on a block what he or she have to offer, and in beginning to make the connections between those people where it is clear that what one person has to offer another person would like to receive and vice versa. That’s how a community culture gets built. And if you do that, then you are going to find on that block people with various kinds of so-called disabilities, and they will be part of a process of community building, rather than people who have to be the objects of programs.

“Imagine my joy when I was able to move back home again...”

- Mike Tarry

TREE OF LIFE SERVICES Physical Therapist Community Based ABI Program

Tree of Life Services, Inc., a recognized provider of transitional and long term neurorehabilitation services, is seeking an experienced physical therapist, preferably NCS certified, looking for a unique, well paying job opportunity in our expanding state-of-the-art community based program. You will be an integral member of a transdisciplinary team and work with nationally recognized neurorehabilitation experts.

Applicants should exhibit initiative, creativity, flexibility and good interpersonal skills.

Please fax cover letter and resume to Dr. Nathan Zasler, CEO, at: (804) 346-1956 or e-mail to: nzasler@cccv-ltd.com.

Rebuilding lives... One step at a time Mike Tarry’s life changed in a flash two years ago when he was seriously injured in a fall at his job, and sustained a traumatic brain injury. Through a great deal of hard work, a supportive family, and Bancroft’s dedicated team of rehabilitation professionals, Mike is getting back to his life.

How Bancroft can help With programs in locations throughout New Jersey, we offer a comprehensive array of treatment options including: • Residential Rehabilitation • Outpatient Programs • Home- and Community-Based Rehabilitation • Neuropsychology • Physical, Occupational and Speech Therapy • Cognitive Rehabilitation Therapy

To learn how Bancroft can help you, call or visit us online: (800) 774-5516 • www.bancroft.org

Holding Standards High.

TREE OF LIFE SERVICES RECRUITING AN EXPERIENCED NEUROPSYCHOLOGIST FOR OUR EXPANDING COMMUNITY BASED PROGRAM Tree of Life Services, Inc., a recognized national provider of transitional and long term community based neurorehabilitation services, is seeking a NEUROPSYCHOLOGIST. This unique and well paying job opportunity will allow you to be an integral member of a transdisciplinary team and work with nationally recognized neurorehabilitation experts. Applicants should exhibit excellent clinical skills (including assessment skills, differential diagnostic skills and behavioral management skills). familiarity with both “brain and pain” issues and have at least 5 years clinical experience in ABI Neurorehabilitation. We are looking for someone with initiative, creativity, flexibility and great interpersonal skills. Please fax cover letter and resume to Dr. Nathan Zasler, CEO & Medical Director, at: (804) 346-1956 or e-mail to: nzasler@cccv-ltd.com.

For over three decades Beechwood’s interdisciplinary brain injury program has been competitively priced and is nationally recognized for its comprehensive community-integrated approach. As a not-for-profit rehabilitation program, Beechwood has demonstrated that it is possible to provide state-of-the-art treatment at a reasonable cost to the consumer.

Services include: • Physical, occupational, speech, language and cognitive therapies and psychological counseling • Case management • Medical services including on-site nursing, neurological, physiatricand psychiatric treatment • Vocational services from sheltered employment through to community placement • Residential services on a main campus, in community group homes and supported community apartments • Outpatient services

A COMMUNITY-INTEGRATED BRAIN INJURY PROGRAM An affiliated service of Woods Services, Inc • Program Locations in PA 1-800-782-3299 • 215-750-4299 • www.BeechwoodRehab.org Beechwood does not discriminate in services or employment on the basis of race, color, religion, sex, national origin, age, marital status, or presence of a non-job related medical condition or handicap.

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non-profit news North American Brain Injury Society

Brain Injury Association of America

The North American Brain Injury Society’s Ninth Annual Conference on Brain Injury was held September 14-17, 2011, at the InterContinental Hotel in New Orleans, Louisiana. NABIS thanks Harvey E. Jacobs, PhD (onference Chair), Mariusz Ziejewski, PhD (Abstract chair), and Michael Davis, CBIST (Development Chair) for organizing an excellent program this year. NABIS’ concurrent event, the 24th Annual Conference on Legal Issues in Brain Injury, was organized by attorneys Stewart Casper, Kenneth Kolpan, Simon Forgette and Bruce Stern.

Kit Malia, BED and Anne Brannagan, OBE, both experts in Cognitive Rehabilitation from the United Kingdom, started the event on Wednesday with a highly informative pre-conference workshop focusing on practical activities used in the rehabilitation of attention, visual processing, information processing, memory and executive functions. The main meeting began on Thursday with plenary talks from Brent Masel, MD, David Seaton, Nathan Zasler, MD, James Kelly, MD and Patrick Donohue, JD. Also on Thursday, Zhifeng Kou, PhD, was awarded the Charles W. Haynes Fellowship which recognizes promising new professionals in the field of brain injury. The following day, attendees broke out into four separate tracks covering a variety of topics including Aging with TBI, PTSD, Concussion, Neuropsychology, Life-long Living, Family Issues and Pediatrics. On Saturday an expert panel held a special three-hour panel on Blast Injury. Also on Saturday, sessions were held on Pain Disorders, Social Capital, Behavior and Translational Science. In addition to the invited speakers, there were numerous oral and poster presentations selected from abstracts submitted to the conference. All accepted abstracts were published in the Journal of Head Trauma Rehabilitation.

NABIS is already working on the program for next year’s meetings. As 2012 will mark the 10th Anniversary of the Medical Conference and the 25th Anniversary of the Legal Conference, we are planning some unique programs and special events to commemorate these milestones – so mark your calendars now for September 11-15, 2012, in sunny Miami, Florida! Details will be posted on the NABIS website, www.nabis.org

BIAA is thrilled to announce that Nathan D. Zasler, M.D., has been awarded the 2011 Sheldon Berrol, M.D. Clinical Service Award, which recognizes the individual who, through a long service career, has made outstanding contributions to improving the quality of care, professional training and/or education in the field of brain injury. Dr. Flora Hammond has been awarded the William Fields Caveness Award, which recognizes the individual who, through research on both a national and international level, has made outstanding contributions to bettering the lives of people who have sustained brain injury. These awards will be presented at the ACRM/ASNR annual conference in Atlanta, October 11-15, 2011.

Mark your calendar for the 7th BIAA Brain Injury Business Practice College February 2123, 2012, at the Platinum Hotel and Spa in Las Vegas, Nev. The planning committee is assembling a program covering the continuum of care, including the ever-popular case study, round-table discussions and networking opportunities. Check www.biausa.org for details.

On Sept. 21, Rolf Gainer PhD, CEO, Brookhaven Hospital and Neurologic Rehabilitation Institute of Ontario, will present the next Caregivers Webinar on Double Whammy: Managing Brain Injury and Severe Mental Illness after Rehabilitation. The next David Strauss Memorial Lecture will take place on Sept. 27, focusing on Hypoxic-Ischemic Brain Injury. Details and registration can be found here: https://secure.biausa.org/. Coming up in October will be webinars on Suicide and TBI as well as Adolescent TBI.

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Defense Centers of Excellence The Department of Defense and the Department of Veterans Affairs have teamed to produce a series of 12 Web-based case studies – featuring actual mild TBI cases – to provide education about various clinical practice guidelines and clinical tools. These case studies will help health care professionals put into practice the VA/DoD Clinical Practice Guideline for the Management of Concussion/Mild TBI (2009), the Updated DoD mild TBI Clinical Guidance (2008), the Military Acute Concussion Evalation (MACE) and the DoD’s ICD9 coding guidance for TBI.

New case study modules are released monthly, each with a different focus including, but not limited to, mild TBI screening and diagnosis, headache management, sleep dysfunction management and coding. The fourth case study in the series, Assessing the Individual with Persistent Headaches, was recently made available to healthcare professionals.

Military and civilian DoD health care professionals can access this case study at MHS Learn: https://mhslearn.cds.disa.mil; VA health care professionals can access it using the VA Learning Management System www.lms.va.gov.

If you are a civilian health care provider, you may access the case studies via MHS Learn’s Civilian Provider Education page at www.health.mil/Education_And_Training/Civilian_Provider_Education.aspx Previous Web-based case studies are still available on MHS Learn and include: Use, Administration and Interpretation of the MACE, Diagnosing Mild TBI and Assessing the Individual with Persistent Symptoms. The fifth case study, Managing the Individual with Fatigue & Sleep Dysfunction, will be released in late September 2011. Be sure to check back monthly to find the most recent web-based case study!

For more information about the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, please visit www. dcoe.health.mil and www.facebook.com/ DCoEpage.

INTERNATIONAL BRAIN INJURY ASSOCIATION Please note that the Call for Abstracts deadline for the International Brain Injury Association’s Ninth World Congress on Brain Injury is October 14, 2011! All professionals who work with people with acquired brain injury are encouraged to submit their research to this international Congress and meeting of minds. The Congress will be held March 21-25, 2012, in the historic and picturesque city of Edinburgh, Scotland.

Abstracts will be reviewed by the Congress’s International Scientific Committee, which will determine the most appropriate presentation format (oral presentation or poster) for each abstract accepted. Abstracts accepted for the Congress will be published in a supplemental issue of IBIA’s official journal Brain Injury.

Submissions must be data-driven or assessment/treatment model descriptions and fit within one of the following submission catego-

ries: prevention, epidemiology, basic research/ animal, basic research/ human, basic/clinical translational research, case report, clinical research/acute care, clinical research/rehabilitation, clinical research/vocational, clinical research/educational , clinical research/life-long care, and descriptive models.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS As this message goes to press, NASHIA is completing its final preparations for the annual State of the States conference in Kansas City, Missouri! More on the results of that conference will be forthcoming and also available on our website.

In addition to providing technical assistance to States, NASHIA has turned its focus to the re-authorization of the TBI Act. The Act authorizes three main areas: • The Health Resources and Services Administration (HRSA) to provide funds to states to develop TBI programs that improve access to service delivery for individuals with TBI. Specifically, states are required to form an advisory board, a designated lead agency and state plan to facilitate improved service delivery.

• Funding to Protection and Advocacy services in each state to ensure legal services are available for individuals with TBI. • Funding to Centers for Disease Control and Prevention (CDC) for surveillance, outreach, and prevention efforts specific to TBI, including the creation and dissemination of treatment guidelines.

The NASHIA Membership, Public Policy Committee, with Susan Vaughn, Director of Public Policy, and Rebeccah Wolfkiel, Governmental Relations, in collaboration with its partners and the Congressional TBI Taskforce are seeking input into suggestions as we develop the language for the re-authorization.

Please let your voice be heard by contacting us at www.nashia.org!

NASHIA continues to hear of the deep and discouraging financial challenges being expressed and experienced across our country! In lean economic times, NASHIA’s presence and activities in the Nation’s Capital are even more vital. In order to be that voice we welcome and thank you for your continued support!

Remember to check our website at www. nashia.org.

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legislative roundup “It is not necessary to understand things to argue about them.”

-- Pierre de Beaumarchais, French Playwright, Financier and Diplomat (1732-1799)

After Labor Day, Congress returned to the nation’s Capital to resume work on reducing the federal deficit, as directed by the Budget Control Act of 2011, signed into law on August 2; proposals relating to job creation; and appropriation bills to fund federal agencies and programs beginning October 1, the beginning of Fiscal Year (FY) 2012. While Congress was on summer recess, Congressional leaders selected the 12 members of the bipartisan deficit panel, referred to as the Super Committee, established by the budget deficit law. The panel is to develop a package of deficit reduction strategies that will amount to $1.2 - 1.5 trillion in cuts over the next ten years. The panel can examine reforms to entitlement programs in order to achieve the savings.

The bill also included a number of up-front cuts which lawmakers will be finalizing over the next two months.

There are two ways the federal deficit can be cut – through automatic “caps” on categories of spending or through a proposed budget by the Super Committee that will identify programs to be cut to result in an overall savings to the federal government. The automatic caps exempt some mandatory programs such as Social Security, food stamps, and Medicare.

However, no revenues would be raised to 34 BRAIN INJURY PROFESSIONAL

help retire the deficit. The Super Committee could cut any program or raise revenues. The panel’s recommendations are due by Thanksgiving. These recommendations and deliberations could have significant and long lasting impacts on entitlement and other disability, education and health related programs.

Republican leaders selected Senators John Kyl (AZ), Patrick Toomey (PA) and Rob Portman (OH), and Representatives Fred Upton (MI), Dave Camp (MI) and Jeb Hensarling (TX). Democrats selected Senators Max Baucus (MT), John Kerry (MA), and Patty Murray (WA), and Representatives Chris Van Hollen (MD), James Clyburn (SC) and Xavier Becerra (CA).

Meanwhile, the Office of Management and Budget (OMB) issued a directive to federal agencies to reduce their budget requests for funding for FY 2013, which begins on October 1, 2012. Federal agencies are to make budget requests that are at least five percent below what agencies received for FY 2011, current fiscal year, but should also identify additional cuts that would put their requests 10 percent below current funding. Agencies are directed to avoid across-the-board reductions by identifying specific programs.

During August, the US Department of Health and Human Services (HHS) continued to award grants to state and local health agencies to improve public health infrastructure, public health workforce and prevention, including substance abuse prevention and treatment -- all in keeping with the Patient Protection and Affordable Care Act (ACA) of 2010. Up to $75 million was awarded to fund nine Screening, Brief Intervention, Referral and Treatment programs over the next five years. These programs will allow communities throughout the nation to provide more comprehensive substance abuse screening, secondary prevention, early intervention and referrals to treatment for people at higher risk for substance abuse. HHS awarded a total of $137 million to states to boost prevention and public health.

In mid-August, HHS awarded $40 million in grants for efforts to identify

and enroll children eligible for Medicaid and the Children’s Health Insurance Program (CHIP). Grants were awarded to 39 state agencies, community health centers, school-based organizations and non-profit groups in 23 states. The two-year grants are authorized under the Children’s Health Insurance Program Reauthorization Act (CHIPRA) of 2009, and are designed to reduce the number of uninsured children.

Finally, the U.S. Court of Appeals for the 11th Circuit recently ruled that a provision in the ACA requiring most Americans to obtain health insurance by 2014 is unconstitutional. The “individual mandate” is a main piece of the ACA, in order to have a broad pool of participants deemed necessary to support the expansion reforms to provide coverage to all Americans. Courts have ruled both ways regarding this issue.

The issue is expected to be decided by the U.S. Supreme Court this fall.

Following the deliberations of the Super Committee will be critical for disability advocates. Many programs affecting individuals with disabilities and their families are considered discretionary programs in that they are funded annually through the appropriations process. This includes education, health, employment, rehabilitation, research, prevention, aging, housing, veterans, mental health, substance abuse and brain injury programs. Should entitlement programs, such as Medicare, Medicaid, Social Security and Food Stamps, be targeted for reductions, this will further impact many vulnerable populations. Most national organizations will be tracking these recommendations and will be posting information on their websites, should you wish to follow their deliberations.

About the Editor:

Susan L. Vaughn, S.L. Vaughn & Assoc., consults with States on service delivery and is the Director of Public Policy for the National Association of State Head Injury Administrators.

She retired from the State of Missouri, after working nearly 30 years in the field of disabilities and public policy, and was the first director of the Missouri Head Injury Advisory Council for 17 years. She founded NASHIA in 1990, and served as its first president.

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Craig Hospital in Denver is dedicated exclusively to specialty rehabilitation and research for people who have sustained devastating spinal cord (SCI) and traumatic brain injuries (TBI). Craig rebuilds lives, leading to unsurpassed outcomes, independence, productivity, and life satisfaction. These outcomes also result in high levels of satisfaction, value, and cost savings for patients, families, employers, insurance companies, and society.

Craig’s focused expertise and in-depth programs, extraordinary longevity of physicians and staff, family inclusion, and real world skills training all contribute to the success of our patients. Craig is more than a hospital — it is a powerful culture of normalization, healing, and a remarkable integration of medicine, education, recreation, and life.

As a premier leader in the field of rehabilitation for more than five decades, Craig Hospital serves patients from all 50 states and several foreign countries. Craig is federally designated as a Model Systems Center for SCI and TBI, has been ranked in the Top 10 Rehabilitation Hospitals for 22 consecutive years by U.S. News and World Report, and has twice consecutively achieved the highly coveted Magnet® Recognition. Craig is also pioneering cutting-edge research and advances in adaptive technology.

As a non-profit, independent hospital, the Craig “family” delivers the highest quality of rehabilitation treatment available anywhere. Ask anyone who has ever been associated with Craig Hospital and you’ll receive a consistent answer: Craig Hospital is a very special place.

3425 South Clarkson Street | Englewood, Colorado 80113 | 303-789-8000 |

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