BIP: Family and Prefessional Partnerships

BR A IN INJURY professional vol. 8 issue 4

The official publication of the North American Brain Injury Society

Working Together: Professional and Family Partnerships to Improve Outcomes after TBI The Importance of Family in Recovery: What They Can Teach the Professional Aging With a Brain Injury Family Involvement x Professional Accessibility + Shared Goals = Outcome What Must a Lawyer Do When Representing a Person With Traumatic Brain Injury And That Person’s Family Coping Styles of Individuals and Families After Traumatic Brain Injury Finding the Voice of Advocacy Through the Silence of Brain Injury.

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contents

BRAIN INJURY professional vol. 8 issue 4

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 4

The official publication of the North American Brain Injury Society

Working Together: Professional and Family Partnerships to Improve Outcomes after TBI The Importance of Family in Recovery: What They Can Teach the Professional Aging With a Brain Injury Family Involvement x Professional Accessibility + Shared Goals = Outcome What Must a Lawyer Do When Representing a Person With Traumatic Brain Injury And That Person’s Family Coping Styles of Individuals and Families After Traumatic Brain Injury Finding the Voice of Advocacy Through the Silence of Brain Injury.

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features 8 The Importance of Family in Recovery: What They Can Teach

the Professional

bY James Petrick, PhD, Michael W. Davis, CBIS-CE and anonymous parent 12 Aging With a Brain Injury

by Richard Paul Bonfiglio, MD 16 Family Involvement x Professional Accessibility + Shared Goals

= Outcome

by CAROLYN ROCCHIO, JIM SCHRAA, PsyD, and ALAN WEINTRAUB, MD 22 What Must a Lawyer Do When Representing a Person With Traumatic

Brain Injury And That Person’s Family by c. Michael Bee, esq.

26 Coping Styles of Individuals and Families After Traumatic Brain Injury

by Roberta DePompei, PhD 28 Finding the Voice of Advocacy Through the Silence of Brain Injury.

by Nadine Lund

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

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editor in chief’s message

Ronald Savage, EdD

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I frequently refer to Michael Davis as “The Last Man Standing”. I use this phrase respectfully and with admiration to recognize Mike for the many, many years of service he has given to the brain injury community both as a family member and as a professional. I do not know of anyone else since the beginning days of NHIF that has lasted as long as Mike, or has made such a lasting impact. He truly is remarkable. Mike never waivers, never quits, and is always, always there when a family needs him. His passion for helping people and families is contagious.

Mike has always felt that the partnership between family members and professionals “working side-by-side” is critical to the outcomes and quality of life for individuals with brain injuries. No one denies that, but making it happen is difficult. It is like creating overlapping sets of circles whereby the best of all worlds are brought together with one goal – how do we best support people with brain injuries now and throughout their lives.

In fact, Carolyn Rocchio and Mike Davis, several years ago, put on a national conference on this very topic. The conference brought together individuals with brain injuries, family members, professionals and other caregivers. Unique to the conference was that every workshop had to be jointly presented by an individual or family member AND a professional or caregiver. At the last NABIS Conference, Mike created a panel of family members and professionals to address what works and what needs to change. Mike and his authors have replicated that theme in this issue of BIP. As you read through the articles, you will experience a sense that while we have made progress in brain injury rehabilitation in many areas, we still lag behind in others. Our Expert Interview with the “Godmother of Brain Injury”, Marilyn

Spivak, takes us back in time to the beginnings of the National Head Injury Foundation and also pushes us into the future.

Marilyn challenges all of us to “unify” our voices once again. As many professionals may have forgotten, the state-by-state brain injury movement in the US was created by family members and survivors who relentlessly pulled the professionals into the mix, not the other way around.

Family members led the way, then and they continue to keep all of us focused on that mission.

NABIS wishes to thank Mike Davis and all his authors for this issue of Brain Injury Professional that re-focuses all of us on the core of what we do as professionals.

Individuals with brain injuries and their families are the people that professionals serve. The better we do it, the better our outcomes our people experience.

I am also pleased to announce the launch of our new and much improved website! We expect our new internet presence to greatly enhance communication and exchange within the professional community. And, as a value added bonus to NABIS members, the new membership area now contains all of the back issues of Brain Injury Professional – in all over 1100 pages of original content unavailable anywhere else! Please visit the new site at www.nabis.org and let us know your thoughts.

Finally, NABIS members are encouraged to mark their calendars for two important NABIS anniversary events: the 10th Annual Conference on Brain Injury and the 25th Annual Conference on Legal Issues in Brain Injury; both meetings will be held September 11-15, 2012, at the InterContinental Hotel in Miami, Florida. Check the NABIS website for details as they become available!

Ronald Savage, EdD

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guest editor’s message

Michael Davis, CBIS-CE

I am honored to be chosen as the guest editor for this exciting edition of Brain Injury Professional. As the only family member serving on the Board of Directors of the North American Brain Injury Society, I am pleased the decision was made to focus this issue on families who have worked side by side with professionals who provided services to their loved ones.

The emphasis of this issue is how families have educated their treating doctors and clinicians to better serve the individual with a brain injury.

Almost 32 years ago, my life was changed forever when my son and I were involved in a catastrophic motor vehicle accident. Todd was just 8 years old in 1980, a very young, energetic and bright child. His whole future was ahead of him but it was destroyed in an instant. He now functions on a 4-5 year old level, has an intractable seizure disorder along with declining age and brain injury related disorders. Thus began my life-long journey into the world of brain injury.

At the same time my family was dealing with Todd’s hospitalization and treatment, Marilyn Price Spivack was forming the National Head Injury Foundation, now the Brain Injury Association of America, out of her home in Framingham, MA. In 1982, I began receiving calls from other families in West Virginia who were searching for services for their

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loved ones. In 1985, the West Virginia Head Injury Foundation, now the Brain Injury Association of West Virginia (BIAWV), was formed and I became the first President and Executive Director. I have remained heavily involved in the BIAWV throughout these years by counseling families, networking with professionals, and continually advocating for services.

In 1993, I established a Case Management Company by assisting attorneys with their brain injury cases. Today, I work nationwide advising families, attorneys, trustees and others about brain injury matters. I have dedicated my life to this disability and hope others who read this issue will consider doing the same.

Therefore, I am dedicating this issue to the many professionals and family members who have made it possible for me to continue my work. Thomas J. Spicuzza, MD, now deceased, was the life-saver for my son, my family and many others who were fortunate enough to find him. He was a highly skilled and inspirational Neurologist and was the first Director of Brain Injury Services at the Woodrow Wilson Rehabilitation Center in Fishersville, VA. Until his untimely death in 2007, Dr. Spicuzza treated Todd for 26 years. Without his professional guidance, treatment and friendship, I shudder to think of where Todd and others would be today.

C. Michael Bee has been my personal attorney and friend for many years. He has helped me personally, my family and especially Todd with the myriad of legal issues that every family faces during these crises. Mike is a true advocate for those who have sustained serious injuries, for their families and for the professionals who work with them. I cannot say enough about his expertise in these matters. I am sure many others would join me in saying “Thanks” for his dedication to this disability.

I would be remiss if I did not mention some of the others who have made a difference in my personal and professional life. Thanks to Marilyn Spivack for her leadership in the development of BIAA, to

Carolyn Rocchio and to other state founders. To Drs. David Strauss and Randy Evans who have gone on before us. May they rest in peace. Michael Meadows of WV DRS and John Perticone of New Medico (formerly) without whose assistance the BIAWV would never have gotten off the ground. Thanks to Ron Savage for his continued leadership of NABIS and to every educator who assists our children.

To Dr. Robert Voogt, founder of NABIS, for his volunteerism and giving to this disability. To Dr. Danny Wedding as the first Neuro-Psychologist I was introduced to and who provided me with the beginning knowledge of TBI. Many thanks to my friends and colleagues, especially Paul Larkin and Dr. Jamie Petrick for their support throughout the years. Most of all, to my first secretary, Ella Lipscomb who worked with me diligently during those first trying years of the BIAWV. There are many others and I’m sure I have missed some, though unintentionally. Last, but most importantly, to my son Todd, whose inspiration has allowed me the vision to assist others with brain injuries and their families. His endurance is remarkable and I will love him forever!!

Many articles and books have been written about the success stories in brain injury. My son Todd, Tim Rocchio and Debbie Price were not as fortunate as some. But despite their ongoing limitations, due to the dedication of the many professionals, some of whom I have mentioned here, our loved ones’ quality of life has been improved.

Clearly my work in brain injury rehabilitation will never be done and Todd, along with millions of others, will continue their daily battles with this devastating disability. Yet, I am grateful for this journey. As you read the articles in this issue, I challenge you, whether you are a family member, an individual with a brain injury or one of the many professionals who work with this disability, to find someone as I did to make a difference in your life.

Michael Davis, CBIS-CE

The Importance of Family in Recovery: What They Can Teach the Professional

bY James Petrick, PhD, Michael W. Davis, CBIS-CE and anonymous parent

Note to readers: In this article, Lorie G.’s case is a prime example of how early intervention with case management can alleviate many long-term problems. If families can find the right experts to treat their loved one, they avoid the many pitfalls that so many people go through during this Introduction

This article addresses the importance of family involvement in the recovery of an individual following traumatic brain injury.

How the family can help teach the professional is emphasized through the perspective of a family member, a professional, and a case manager.

The Family’s Perspective

After our son was injured, initial medical reports indicated that he would recover in a few months. The routine scans were administered with no abnormal findings. John was released from an overnight stay in the hospital, and sent home. Post-release instructions were to administer Tylenol for pain, allow for plenty of rest, and return to the emergency room if any other symptoms of post-concussion syndrome developed. There was a return trip to the emergency department soon after the accident and successive trips to doctors, psychologists, and neurologists.

If only they could have given accurate answers to us or some relief to my son, or, if just once one of them would have said, “I 8

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life-changing ordeal. A case manager experienced in brain injury cases can make a significant difference in the outcome of individuals with brain injury. Ms. G. discusses how case management has assisted her to provide the proper care and treatment for her son.

don’t know how to help you, but I will help you find someone who can,” our son’s recovery would have been expedited, and his suffering abated sooner.

As any parent would do, my husband and I researched specialists in traumatic brain injury, treatments, care providers, and rehabilitation alternatives. There did not seem to be anyone with expertise in the area of TBI. All the while, our son was experiencing debilitating headaches, insomnia, diminished thinking, and severe fatigue. Our son’s world was falling apart, and we could not put it back together for him. We felt helpless, and alone. Our sole purpose on this earth was to protect our child, and provide a safe environment for him. When this could not be achieved, the stress on the family structure was enormous.

After several months of searching, with numerous false starts and disappointing ends, we found a knowledgeable, wellconnected, and empathetic case-manager who took charge by designing an action plan that would finally get John the assistance he so desperately needed. Families, no matter their

educational level or financial status, cannot begin to manage the myriad of services required when a loved one suffers a brain injury. The system is too vast, and the list of practitioners with the appropriate expertise is too small.

Our case manager quickly started making appointments with a host of specialists including a physiatrist, an educational consultant, a neuropsychologist, a neuro-radiologist, an endocrinologist, and a neurologist. He obtained appointments within weeks that we were unable to secure in months. The level of expertise these various practitioners exhibited was phenomenal. Tests were given, and results were received back in a timely manner. Explanations were given in a language that our family could understand, and not a member of the team ever made us feel that we asked too many questions, or went over our appointment time. It seemed as if our son was their only focus.

When a family is faced with a life-altering event, knowledge is power. However, the use of that knowledge goes far beyond what you would expect. Intellectual ability must be intertwined with what is felt. Without a doubt, our son has received the best care available. As parents, we feel confident that our son has been assessed and diagnosed properly. In our family’s case, science, and medicine have worked in tandem with our specific knowledge of how our son functions, and feels on a daily basis. Appropriate plans are underway for his continuing success, and it has been a team approach. There have been no egos present. Everyone has the same goal. My son feels valued because his feelings and insights are taken into consideration.

Without the case manager, our son would still be suffering needlessly. His academic performance would continue to decline, and his future would be quite uncertain. The case manager has provided endless reassurance and advice. He has linked us to the best care providers possible. But mostly, he has become an advocate for our son. We can never thank him enough, and will always consider him to be more than just a case manager. He is part of our family.

The Professional’s Perspective

John is a classic example of how even “good and strong families” can experience poor outcomes without the right professionals.

Clinically, it is well recognized that individuals with good family support usually do “better” than those without. Outcomes for individuals after brain injury are highly personal and are highly variable depending upon the family’s perspective. Thus, as a health care provider in a rehabilitation setting, it is obviously important to provide “patient and family education” to the professionals involved in the day-to-day care delivery.

While the primary role of the family is to provide emotional support to their loved one, the family also provides support and education to the professionals (e.g., physician, nurse, psychologist, neuropsychologist, therapist, etc.). Family members can provide insight into those qualitative factors that cannot be so easily measured in a clinical setting, especially the illusive “quality of life” indicators (e.g., return to home, return to work, return to community). As such, informal observations by family members regarding social behaviors, emotional adjustment, quality of sleep, day to day functioning, relationships with loved ones, and even level of cognitive endurance can be invaluable in terms of adjusting treatment approaches

and goals.

Lastly, the family of an individual who is recovering from a traumatic brain injury is also in a very unique position to teach professionals the importance of “life’s cornerstones” such as motivation, hope, faith, and love. These are qualities of life that are not readily conveyed to professionals in medical school or graduate school. Furthermore, these are variables that are difficult to scientifically measure or even understand on the level that most professionals are traditionally familiar. As a science, our profession has not been successful in quantifying these quality of life indicators, but clearly the importance of these indicators in the recovery process is central in an individual’s outcome. Unfortunately, while textbooks like Love, Medicine and Miracles by (Segal, 1990) are well known by the public, including the importance of the crucial “patient-doctor relationship” in other chronic diseases (e.g., cancer, and cardiac disease), this subject matter is often not a core component in how professionals see recovery after traumatic brain injury.

Professionals need to realize that despite their years of education, they are still students in the field of traumatic brain injury, and the best teachers are their patients and the family members.

Who else can provide that level of instruction? Who else is in a position to actually define “quality of life” other than the family?

Case Management

The “glue” between professionals and families with a person living with brain injury is often the Case Manager. Case Management has evolved in the past 40 plus years into an integrated approach to rehabilitation and long-term care. Since the 1960’s, the Case Manager has been the key organizer of services in traditional rehabilitation settings. Today, Case Managers are routinely and almost universally involved in organizing and coordinating rehabilitative services and resources to facilitate an injured person’s functional recovery. The Case Manager works closely with the rehabilitation team, insurance representatives and appropriate medical, legal and educational consultants, but most importantly with the family. An experienced Case Manager attends to concerns from all parties involved, prioritizes the issues, develops and ultimately directs and oversees the implementation of the recommended services.

It has been a distinct pleasure to work with this family and the treating professionals who are working with John. John’s case is unique in the fact that it was “early on” and the family was still struggling with what to do. Not only is John’s family well educated, they were willing and open to work with a case manager, someone whom they had never been exposed to in their lifetime. They were also willing to not let geography get in the way of treatment for their loved one. John was a good son with good parents and needed assistance. A knowledgeable TBI case manager would evaluate this case and quickly determine the individual’s needs, as well as the family’s needs, and begin services immediately. This family desperately needed these types of experts to ease their fears and concerns. To best understand John’s complex needs, it was clear that an educational consultant was required, a physiatrist, a neuropsychologist, and to get advanced neuro-radiological studies completed.

These evaluations were necessary to provide John’s family and the case manager with the tools necessary to assist John with his future educational, psychological and medical needs and to BRAIN INJURY PROFESSIONAL

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have all this information carefully laid out in a comprehensive and detailed plan of care.

Such a “managed care” approach truly allows for a planned approach to providing John, or any other person with a brain injury, the optimum ability to have a quality of life beyond that which the typical “survivor” of this awful disease has available to him/her. Case managers with extensive TBI experience will provide a person with a brain injury, their family and the professionals who serve them with the vast knowledge that enables the “team approach” and will ultimately allow increased rehabilitation outcomes that improve the overall situation for the long-term.

With the blending of the multiple skills and knowledge from family members, professionals and case managers, successful outcomes and better quality of life opportunities are realistic for persons with brain injuries. A good independent case manager is the key to any successful outcome in brain injury. From a personal perspective, over many years, I have watched those who have tried to assist these individuals with limited success and I have discovered that it takes a case manager with special talents to manage the very complex issues in these matters. Someone with sympathy, empathy and a family approach to the myriad of problems facing families, survivors and the professionals who treat them is imperative.

ABOUT THE AUTHORs

Michael Davis, CBIS-CE, is a Certified Brain Injury Specialist and an independent case manager specializing in traumatic brain and spinal injury cases. Since 1985 Mr. Davis has been a consultant to attorneys, insurance companies, families, survivors and service providers lending his expertise in the areas of case reviews, rehabilitation needs assessment, educational/vocational planning, access to resources and life care plan implementation. He has been actively involved in public education, program development and advocacy throughout his many years of service in the field of rehabilitation. Mr. Davis is the current President, Co-Founder and past Executive Director of the Brain Injury Association of West Virginia (formerly the West Virginia Head Injury Foundation). He serves on the Board of Directors of the Brain Injury Association of West Virginia and is former Chairperson of the Ethics and Standards Committee of the Brain Injury Association (formerly the National Head Injury Foundation). Over the years Mr. Davis has served on the Advisory Boards of several rehabilitation facilities as well as other health related organizations including the West Virginia Traumatic Brain & Spinal Injury Rehabilitation Fund Board and the North American Brain Injury Society. To contact the author, email: mdavis@ brainman.com James D. Petrick, Ph.D. is a clinical neuropsychologist in independent practice specializing in working with people with various neurological, neurodevelopmental, and neuropsychiatric disorders, in addition to individuals who have sustained neurological trauma as a result of head trauma (traumatic brain injury; concussion; blast injury), chemical exposure, cerebral vascular accidents, hypoxia/anoxia, etc. He has offices in Pittsburgh, Pennsylvania, and Morgantown, West Virginia. He is on the medical staff at Allegheny General Hospital, Suburban Campus, Department of Psychiatry in Pittsburgh, and was with Healthsouth Mountainview Regional Rehabilitation Hospital in Morgantown for close to 18 years. He is an assistant professor with the Department of Psychiatry of the West Penn Allegheny Health System, Allegheny General Hospital, Drexil University, and the Medical College of Pennsylvania. He is also associated with West Virginia University, the Robert C. Byrd Health Sciences Center, and the Center for Excellence in Disabilities (CED) as a consultant. He directs several programs with the CED including clinics related to traumatic brain injury, sports related and blast related (military and industrial) and concussion.

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AGING WITH A BRAIN INJURY

by Richard Paul Bonfiglio, MD

I routinely advise my patients that we are all fighting two los- Joseph to take over my practice in 20 years (assuming he goes ing battles, time and gravity; however, for my patients who straight through).

I have been blessed with the opportunity to work with have suffered significant brain injuries, these forces can be especially problematic. The aging process can lead to additional many incredible individuals who have suffered brain injuries. impairments and medical complications with the potential for However, none have taught me more about the sanctity and further reducing quality of life for the affected individuals. A value of life in the face of profound challenges than Tony, comprehensive, but individualized approach to the provision Kathryn, and Kevin. Tony and Kevin have each lived more than 15 years since their brain inof ongoing daily, medical, and reWhenever Sondra calls, I know that she has juries and for Kathryn it has been a habilitative care is essential in minlife-long challenge. imizing the negative consequences already done everything to prevent Tony is 36 years old and suffered of the aging process on those who complications from his brain and spinal cord an iatrogenic anoxic brain injury in have suffered a significant brain ininjuries. I take each call with humility and some 1996. He lives with his parents in jury. trepidation, recognizing that careful an addition to their lovely home.

I believe that providing vignettes of the lives of individuals who have medical consideration is needed since Sondra He receives 24-hours per day nurslived many years following brain has already fully analyzed the situation and has ing care from devotedly attenand dedicated staff. His daily injuries will help to illustrate the provided appropriate daily and nursing care. tive care needs require assistance with inherent long term care issues and struggles that we face together. Maintaining daily, medical, all activities of daily living and mobility and provision of his and rehabilitative stability for a person’s status post significant medications and tube feedings. Despite his global aphasia and brain injuries requires a well-functioning team that works best markedly impaired mobility due to tetraplegia, Tony attempts when it includes the individual with the brain injury, family to communicate his needs and wants through facial gestures, members, and all the caregivers and other stakeholders. Physi- guttural sounds, and cries. Despite his impairments, he concians specializing in Physical Medicine and Rehabilitation are sistently and boisterously laughs at his father’s bathroom huin a unique position to help orchestrate the care for such indi- mor, reportedly consistent with his pre-injury sense of humor.

Working with Tony and his family for more than 15 years viduals, since we are trained to focus on enhancing functional recovery and routinely consider the long term consequences of has been rewarding, educational, and a pleasure. His parent’s medical conditions and impairments. In my attempt to plan devotion to his ongoing care and well-being permeates their for the long term needs of my patients, I am grooming my son lives and aspirations. Our quarterly staffing meetings in their 12 BRAIN INJURY PROFESSIONAL

Kathryn was admitted by me to an inpatient rehabilitahome have included wide-ranging discussions from healthcare to politics, but meeting Tony’s acute and long term care needs tion hospital for a comprehensive rehabilitation program that included physical, occupational, and speech therapies. Her has remained preeminent.

The home addition is barrier free and includes a bedroom, progress included improved bed mobility and greater particbathroom, and sitting area. There is an elevator to the base- ipation in basic activities of daily living. However, neither ment that provides Tony access to an indoor exercise pool. medications, nor physical modalities eliminated her apparThere is also a “walking trail” and outdoor pool for use dur- ently intense and distracting pain. Only narcotics provided modest relief. Fortunately, over many months, this pain coming the warmer months.

Tony’s medical condition has generally been stable since pletely resolved. However, she still has marked spasticity that his inpatient rehabilitation program. However, he has had requires incredible doses of oral anti-spasticity medications, periodic setbacks, especially due to painful conditions. Over repeated Botulinum toxin injections, and regular stretching the years he has been bothered by recurrent abdominal pain exercises. With time and therapy, her swallowing has greatly with a variety of etiologies including gastric distress and uri- improved and she again receives all her nutrition by mouth. nary tract stones. He is now most bothered by pain due to left She can stand with the assistance of a therapist and even take hip arthritis that limits his tolerance of the use of a standing a few steps.

Kathryn’s mother, Linda, has always provided her care and frame. I anticipate that he will eventually need a left total hip arthroplasty due to the severity of his hip arthritis. However, Kathryn remains largely dependent for all basic activities of I also anticipate difficulty finding an orthopedic surgeon who daily living and mobility. Despite her limitations, I now see will be willing to perform the necessary procedure. However, Kathryn and Linda more often in the community attending the surgery will be needed to improve his quality of life and events including school functions, festivals, and historical disreduce the potential for additional medical issues. Manage- plays, than I do with my quarterly house calls. Kathryn has an ment presently includes the judicious use of narcotics and ever present smile that reflects her satisfaction with her quality of life and is a testament to her mother’s doting care. Due anti-inflammatory medications.

Tony has had a variety of gastrointestinal problems. Due to to her own age and medical condition, Linda is concerned about Kathryn’s future daily care allergies and intolerances, it took Preventing further deterioration in the since Kathryn is likely to outlive a long time to find a tube feeding that he could digest without caus- individual’s medical condition and especially in her. Finding someone to provide ing abdominal pain and bloating. their residual functional capabilities are essential the twenty-four hours per day lovHe still only tolerates a simple, el- to maintaining and enhancing their quality of life. ing assistance to which Kathryn has become accustomed and deemental diet and requires frequent venting of the gastric tube. An ongoing challenge is the need pendent seems daunting. Advances in medical and rehabilitato frequently review Tony’s multiple medications and prevent tive care have allowed Kathryn the likelihood of a normal life a natural increase in their number and variety, setting him up expectancy, but it has been the seemingly inexhaustible care by her mother that has provided her with the quality of life that for intolerances, side effects, or drug interactions.

Tony has never been a “morning person” and this continues she has enjoyed.

Kevin is a 65-year-old with a complex medical history that to be the case. However, adapting to his schedule is made easier by his being at home. His quality of life is further improved includes a seizure disorder since age thirteen, a traumatic brain by periodic shopping trips and other outings and annual vaca- injury from a fall in 1995 that occurred while he was riding a tions, especially to the beach. The lives of Tony and his family mountain bicycle, and an incomplete spinal cord injury with have been dramatically altered by his brain injury. However, C 5 tetraplegia, ASIA class C due to a fall in 2000. Kevin accepting his new reality has allowed him to have a dramati- is now unable to routinely ambulate. Only with the use of cally improved quality of life despite his cognitive, linguistic, bilateral hip knee ankle foot orthoses (HKAFO’s), a rolling platform walker, and the assistance of a therapist can Kevin and motoric impairments.

Kathryn is a 52-year-old who has cerebral palsy with as- walk short distances. However, after assistance with transfers sociated expressive aphasia and motor impairments. Despite to a powered wheelchair, Kevin can independently navigate her physical and linguistic limitations, she easily expresses her the wheelchair.

Kevin always presents interesting medical dilemmas. I opinions with head nods and vocalizations, but is dependent on others, primarily her devoted mother, for mobility and all tease him that he has “never done things the easy way.” I have had the challenge of managing his care through a variety of criactivities of daily living.

When I first met Kathryn in April 2008, she was hospital- ses including severe hyponatremia (low blood sodium levels), a ized for an apparent right hip injury following a fall. Prior renal neoplasm, idiopathic hives, and pancreatitis. His course to the fall, she could ambulate short distances with minimal has been further complicated by hypothyroidism, Cholelithiaassistance provided by her mother. The seemingly intense sis, obstructive sleep apnea, peripheral vascular insufficiency, and intractable right hip pain persisted despite no evidence recurrent urinary tract infections, urinary tract stones, orthoof bony injury and multiple and varied attempts at treatment static hypotension, gastroesophageal reflux disease (GERD), including various medications. Her acute course was further recurrent fevers, recurrent lower limb deep venous thrombosis, complicated by aspiration pneumonia and increased dyspha- basal cell skin cancer, and chronic fatigue. Fortunately, begia (swallowing difficulty). A gastrostomy tube was placed to tween the crises, Kevin’s daily care is provided by his extremely competent wife. Kevin chose well when he married Sondra for provide her nutrition and medications.

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she is not only a devoted wife, but she is also an R.N. and his primary daily caregiver. Whenever Sondra calls, I know that she has already done everything to prevent complications from his brain and spinal cord injuries. I take each call with humility and some trepidation, recognizing that careful medical consideration is needed since Sondra has already fully analyzed the situation and has provided appropriate daily and nursing care.

Kevin resides with his wife in a beautiful house that has been built with a barrier free design that includes a residential elevator. There is a ceiling-mounted lift device that transports Kevin from his bed to the bathroom, facilitating his daily care, especially bathing. The housing adaptations are difficult to identify by an untrained observer since they do not detract from the loveliness of the home.

The combined effort of his wife and the medical and rehabilitative team have allowed Kevin the opportunity to live with a quality of life that he finds pleasurable including regular vacations and time spent with family.

Thus, these three unique individuals, Tony, Kathryn, and Kevin have shown me the importance of ongoing medical vigilance whenever possible to prevent secondary medical complications and impairments. For those medical problems that do arise, careful monitoring and timely medical management are essential. Even seemingly minor acute medical issues can fulminate into chronic debilitating problems if not managed aggressively. Preventing further deterioration in the individual’s medical condition and especially in their residual functional capabilities are essential to maintaining and enhancing their quality of life. Individuals with severe brain injuries may be constrained by their impairments, but meaningful and enjoyable lives continue. With the ongoing support and care by

subm nline and o r e t s R egi

family members, caregivers, and healthcare providers, individuals with brain injuries can live a lifetime full of enjoyable events sandwiched in the travails of routine life that we all experience.

About the Author

Richard Paul Bonfiglio, MD, has devoted his 30 years of clinical practice to helping individuals following catastrophic injuries and illnesses to maximize their functional capabilities and quality of life, while preventing or timely managing secondary complications. He has focused on the provision of life long care for these individuals, especially by providing the medical foundation for life care plans, outlines for their future needs.

Dr. Bonfiglio has also served as the medical director of premiere rehabilitation hospitals including the Schwab Rehabilitation Hospital in Chicago, Bryn Mawr Rehabilitation Hospital in Philadelphia, Lake Erie Institute of Rehabilitation in Erie, and Healthsouth Harmarville Rehabilitation Hospital in Pittsburgh. He also served as the first Medical Director for the Rehabilitation Division of the Industrial Commission of Ohio during its development of the Camera Center in Columbus. He has been a CA.R.F. (Commission on Accreditation of Rehabilitation Facilities) surveyor, an oral board examiner for the Academy of Physical Medicine and Rehabilitation, was on the founding board of PASSOR, and helped write the initial board examination for ABIME (American Board of Independent Medical Examiners).

He has maintained academic appointments throughout his career.

He presently is on the faculty of the University of Pittsburgh in the Department of Occupational and Environmental Medicine and Temple Medical School in the Department of Physical Medicine and Rehabilitation. He has given hundreds of talks nationally and internationally on topics within the field of Physical Medicine and Rehabilitation including presentations on pain management, dealing with the long term needs of catastrophically injured individuals, and the medical foundation of Life Care Planning.

it a poster abstract now for

PACIFIC COAST BRAIN

INJURY CONFERENCE

Real People with Real Lives: It takes a village www.brainstreams.ca/conference • or call 1.604.984.6448

February 15 – 17, 2012

Sheraton Vancouver Wall Centre, Vancouver, BC, Canada

Lois McElravy, Brain Injury Survior “Navigating through the Complexities of Life and Brain Injury”

Dr. Catherine Mateer, University of Victoria Co presenting: “Neuroplasticity, MRI and Recovery”

14 BRAIN INJURY PROFESSIONAL PCBIC Half PageOct3.indd 1

Dr. Ryan D’arcy, National Research Council Canada Co presenting: “Neuroplasticity, MRI and Recovery”

Dr. Gabor Maté, Physician and Author “Brain Injury and Addictions: What is the Causal Relationship”

Val Lougheed, Med, RSW, CCRC, MCVP, ACE, RRP “Trauma, Rehabilitation and Recovery – It Takes a Village” 11-10-26 8:34 AM

Family Involvement X Professional Accessibility + Shared Goals = Outcome

by CAROLYN ROCCHIO, JIM SCHRAA, PsyD, and ALAN WEINTRAUB, MD

There is an overwhelming sense of naivety amongst families that seems to protect one against the long term reality following traumatic brain injury. When my newly turned twenty-two year old son, Tim, was injured in a 1982 car crash, I clung to the belief that he would emerge victoriously from the catastrophic event. I was very optimistic and organized about keeping daily journals so he would have an accurate record of the unfolding cascade of medical issues that threatened his life for the forty-two days he remained on the critical list.

Unless one has a background in medicine, it is very difficult for family members to grasp what happens inside the skull when a loved one sustains a brain injury. I have always been a curious person who asks questions, seeks answers, and needs to understand the whys and wherefores. Unfortunately, this often resulted in being shut out by treating professionals during the 16 BRAIN INJURY PROFESSIONAL

acute hospitalization. In fact, in Tim’s case, the neurosurgeon was particularly reticent about discussing anything with me which resulted in a confrontation which prompted him to suggest that he would sign off the case if I was unhappy with the treatment he was providing. I wasn’t questioning his skill, only trying to begin to understand what the future held for Tim and our family. Some years later, I read all of Tim’s acute care records and was well pleased that all appropriate treatment interventions were provided. Were it not for private duty nurses employed, however, I would have been kept completely in the dark about his condition.

Just short of three months post injury, Tim began to wake up and my thoughts turned to rehabilitation. Once more I naively believed brain injury rehabilitation was available everywhere, but in a serendipitous moment I learned that there was a specialty

hospital for brain and spinal cord injury in Denver. Several weeks later we were on a Lear jet traveling three quarters of the way across the country to find the help Tim needed. From the minute the flight nurse, Anne, entered Tim’s room in the acute care hospital and prepared him for the trip, I knew we had made the right decision.

The degree of professionalism reassured me about Tim’s safety from the manner Anne prepared him for travel to relieve pressure on his skin for the nearly five hour flight and her willingness to discuss his condition with me. She had reviewed all of Tim’s medical records prior to the trip so when we hit a storm in the panhandle of Florida and the pilot asked to increase altitude, she informed him that medical records noted air in Tim’s skull that was apparently never discharged, and she instructed the pilots they would have to go around or under the turbulence as it was too risky to go to higher altitudes.

Events unfolded rapidly on arrival in Denver. We first met Tim’s physician who immediately began a complete examination while my husband and I were whisked away to meet our family counselor. The atmosphere was a far cry from the acute care hospital we were used to, the staff wore street clothes, and the patients were happily engaged in therapies or participating in some of the many recreational activities. It was a happy place where patients were treated as people and not as patients to be pitied.

Our first family conference was held at the end of a two week evaluation. The entire team presented their short and long term goals for Tim. The initial emphasis was upon physical recovery as his cognitive level was still so low that a neuropsychological assessment would be postponed until later when more valid information could be obtained. Tim was in the room during that meeting and I worried that information he would hear could be discouraging, but I should have trusted his team and their experience.

The initial evaluation of Tim was sobering, particularly concerning his ability to ever walk or talk again due to the extensive damage to areas of the brain that controlled those functions.

However, time frames were established regarding when these functions would be reassessed. Although there was no reason to expect a miracle, the team preserved our hope for substantial improvements. The most incredible information from that conference was the announcement of his discharge date, just some three months away. I was shocked at first, but later realized that the Tim’s Team was so experienced that they were able to plan ahead that well.

Tim was assigned to an interdisciplinary treatment team with a lead physician and all usual therapists, including a recreational therapist. Recreational therapy became Tim’s favorite class and it’s amazing how many therapeutic gains he made while “having fun”. Several times a week, Tim was in the indoor pool, he went to miniature car races, for bus rides in the Rockies to see the snow, and wheel chair square dancing to name a few of the things he enjoyed. The daily schedule was grueling with six hours of therapies. I was living across the street in the family apartments and I was always encouraged to be involved in all aspects of therapeutic interventions.

At this wonderful rehabilitation hospital, you became “family”, a part of Tim’s Team. The physician’s offices are in house, there is constant access to them in the hallways, the dining room, and the environment provided a holistic atmosphere of heal-

ing. Our entire family was included in the program and I never missed a Wednesday night family meeting. I attended all therapy sessions, became a “quasi” therapist to help Tim through mat class, learned to transfer him with his physical therapist, understood the degree of perceptual problems sitting behind him in occupational therapy, and learned about aphasia in speech sessions. It was an eye opening education for me working side-byside with Tim’s therapists.

We left on our discharge date with prescriptions for outpatient therapies, a daily structured plan, custom fitted wheelchair, forearm crutches, and we were fortunate to have ample insurance available for additional rehabilitation in the future. Tim’s Team felt it was important that he experience some home time to spontaneously improve while still receiving outpatient therapies.

Tim made great physical strides at home and eight months after his initial discharge from Craig we returned for the neuropsychological assessment and reevaluation with his team. His tolerance for the hours required for a full neuropsychological battery was low that his neuropsychologist arranged breaks and rest stops in order to obtain the most valid information. Additionally, very few families have the benefit of meeting with the neuropsychologist to explain the results of this important evaluation. We were fortunate to have a conference which was also audiotaped for the benefit of other family members unable to be present, a hard copy of all test scores, and the interpretation.

It was also at this discharge conference that we learned that Tim, due to the extent of cognitive deficits, would require a lifetime of supervision. That news did not come as a shock to us because we had the advantage of seeing, first hand, how impaired he was at home and in the community. Tim’s neuropsychologist explained in great detail about Tim’s unchanged abilities along with areas of the brain adversely affected which would impact on his life. He gave us clear descriptions of ways certain deficits would affect Tim’s day to day existence. This important information helped our family more effectively guide and support Tim by encouraging use of his preserved abilities and reinforcing strategies to compensate for his deficits. This vital piece of the puzzle helped our family push Tim forward without expecting more than he was capable of doing. We certainly did not give up, and on recommendation of Tim’s Team some months later, he entered a transitional program where the goal was to acquire more strategies and structure to compensate for deficits thus increasing his level of semi- independence.

Over the years, as Tim continued to go through occasional troubling changes, I called his neuropsychologist and other members of Tim’s Team for advice. Today, Tim is 29 years post injury and lives with me in a very structured environment. He works in a family business and enjoys a reasonably high quality of life. We still make periodic visits back to Denver for “tuneups” and many members of Tim’s original team are still there. It’s like a family reunion for us.

Comment

Tim’s case reflects a rich time period during the history of rehabilitation for patients with traumatic brain injuries. Our emphasis was on applied behavioral neurology directing rehabilitation and involving families in treatment. The relatively long length of stay that Tim benefitted from allowed his family and treatment team to learn about how to effectively structure Tim to reduce BRAIN INJURY PROFESSIONAL

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the occurrence of episodes of dyscontrol, and maximize his potential. Having family members actively involved in treatment permitted realistic family/team discussions in regard to achievable goal setting.

From a societal perspective, Tim’s case illustrates the long term advantages of having sufficient rehabilitative therapy in that Tim was able to return home and stay home. This has allowed huge cost savings to the Medicare system and better quality of life for Tim. From a professional view point, Tim has been lucky that his mother and family of origin have been able to provide long term structure, scheduling, and case management services for him.

An ongoing goal for the brain injury rehabilitation field will be to generate systems for providing respite care, and placements that provide maximum levels of independence as patients and their parents’ age.

An irony associated with Tim’s case is that his funding actually permitted more treatment than the vast majority of health and accident policies would allow today. In turn Carolyn Rocchio’s ongoing advocacy in the brain injury field reflects the informed awareness that sufficient treatment produces better outcomes.

Jim C. Schraa, PsyD Neuropsychologist Craig Hospital

Comment

It’s critically important as specialists in the field of Brain Injury Medicine to learn from the heroic story of Tim Rocchio and his family. All too often, physicians and other health care providers, albeit well-meaning, focus their attention and expertise solely on the injured person and less effectively have the resources for dealing with a catastrophically injured family that benefits from realistic individualized education and support.

Over the last three decades since Tim’s injury, state of the art advances have occurred in acute care and neurorehabilitation.

However, as a specialty field of medicine, we remain challenged professionally, politically and financially how best to meet the relevant lifelong needs of those persons and families afflicted by this life altering catastrophic disease.

Three years following Tim’s injury, he experienced episodic “ behavioral spells” which were superimposed onto his already troubling chronic neurocognitive impairments. Ultimately, his diagnosis of Post-Traumatic Epilepsy was confirmed as the culprit for these “spells”. While advanced neurodiagnostic tests confirmed this diagnosis, equally important were the observational logs the family kept and family vigilance managing these spells. Over many years following, this collaborative medical-family approach, optimal antiepileptic medication management has controlled these behavioral spells instead of treating him with potentially deleterious psychotropic medication. This example of close collaboration between the medical system and family has allowed Tim’s mother, Carolyn and other family members to also become aware of other TBI aging related issues which may occur over time. This includes but is not limited to further cognitive decline, neuroendocrine dysfunction, sleep changes and alterations in physical mobility and ADL independence. Only an educated and informed family can provide the vigilant monitoring necessary to monitor for these conditions in an effort to maintain longevity and an aging 18 BRAIN INJURY PROFESSIONAL

process associated with quality of life.

Successful aging as an optimal state of overall functioning and well being following a catastrophic traumatic brain injury is a wonderful goal and is difficult to achieve. The Rocchio family story highlights the importance of a realistic, trusting relationship between experienced health care professionals and a family yearning for information and guidance. Only this collaborative approach can lead to successful outcomes and ultimate happiness.

Alan H. Weintraub MD Medical Director Brain Injury program Craig Hospital ABOUT THE AUTHORs

Carolyn Rocchio is a nationally recognized advocate, author, and speaker in the field of brain injury. She developed her expertise in brain injury following a 1982 auto crash in which her son sustained a severe traumatic brain injury. She is the author of Ketchup on the Baseboard, as well as numerous monographs and book chapters. She is the Founder of the Brain Injury Association of Florida and over many years has served on numerous federal, state and local boards and committees. She is currently a consultant for the Teaching Research Institute, Western Oregon University and an advisor for the International Severity Information Systems, NIH Grant.

Ms Rocchio received the James H. Bruce Lifetime Achievement Award from the Florida Department of Health, Brain and Spinal Cord Injury Program. She is also the recipient of several major national awards: Jim and Sarah Brady Award for Public Service; the Association of Trial Lawyers of America Civil Justice Foundation Community Champion Award; the 2004 John Young Lectureship, Craig Hospital, the 2005 David Strauss Memorial Lectureship, and the North American Brain Injury Society 2005 award for Public Policy and Advocacy.

Jim Schraa, PsyD. As a neuropsychologist at Craig Hospital, Dr. Schraa has served and advocated for persons with brain injuries and their families for 28 years. Dr. Schraa was an appointed member of the Colorado Task Force on Traumatic Brain Injury and Workers Compensation for the State of Colorado, Department of Labor and Employment. He was a member of the Legislative Committee of the Brain Injury Association of America and had worked closely with the congressional legislative aides and members of Congress to improve the treatment of active duty military and veterans with TBI. In 2007 he testified before the House of Veterans Affairs Committee on the topic of treatment of traumatic brain injury and has consulted with the Triwest Insurance Company about treatment of TBI for military personnel, retired military and their families. He is chairman of the OIF/OEF Operation TBI Advisory Board. The OIF/OEF program serves members of the military and veterans. He also regularly sees traumatic brain injury patients at a Level One Trauma Center. His experience also included seeing central nervous system injury patients from the Columbine School shootings.

Alan Weintraub, MD has been Medical Director of the Brain Injury Program at Craig Hospital since 1986. Dr. Weintraub also served as the Medical Director for the Rocky Mountain Regional Brain Injury System, a federally designated Model System of Care with extensive clinical, research and dissemination activities. Over his tenure in the field of Traumatic Brain Injury Care and Rehabilitation Dr. Weintraub has served as Medical Director of post acute residential brain injury programs and several long term subacute brain injury programs. He is also assistant professor at the University of Colorado Health Sciences Center and an active consultant to the Colorado Division of Worker’s Compensation Medical Treatment Guidelines TBI Task Force. He is board certified in Physical Medicine & Rehabilitation and is fellowship trained in Neurotrauma, Brain and Spinal Cord Injury. Dr. Weintraub has special interests in pharmacological management of adults with brain injury, spasticity, sports-related concussion and the long term consequences of brain injury. He is actively involved in local, regional and national organizations and is devoted to the aging and long term needs of individuals with brain injuries and their families. For over 25 years Dr. Weintraub has lectured extensively to broad audiences and published on a number of specific clinical and research topics related to both traumatic and acquired brain injury.

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

FEBRUARY 8-12 – American Physical Therapists Association Combined Sections Meeting, Chicago, IL. For more information, visit www.apta.org/ CSM/ 15-17 – 22nd Pacific Coast Brain Injury Conference, Vancouver, BC, Canada. For more information, visit. www.brainstreams.ca/conference 17-19 – 22nd North American Skull Base Society Annual Meeting: Managing Risk at the Skull Base, Las Vegas, NV. For more information, visit www.nasbs.org.

23-25 – Santa Clara Brain Injury Conference: Building on the Legacy of Coma to Community, San Jose, CA, USA. For more information, visit www.braininjuryconference.org.

MARCH 6-7 – 2nd Annual Traumatic Brain Injury Conference, Washington, D.C. For more information, visit www.tbiconference.com.

21-25 – Ninth World Congress on Brain Injury, Edinburgh, Scotland.

For more information, visit internationalbrain.org. This is the official World Congress of IBIA. 27-28 – Brain Injury Association of West Virginia: Sports Concus-

sion- Not Just a Bump on the Head, Charleston, WV. For more information, visit www.biausa.org/WVirginia/news.htm MAY 3-5 – Fourth Annual Brains, Trains & Automobiles Seminar, Napa Valley, CA. For more information, visit www.media-rich.com .

JULY 22-25 – NNS 2012: The Spectrum of Neurotrauma, Phoenix, Arizona.

For more information, visit www.neurotraumasymposium.com.

SEPTEMBER 11-15 – 25th NABIS Annual Conference on Legal Issues in Brain Injury, Miami, FL. For more information, visit www.nabis.org 11-15 – 10th NABIS Annual Conference on Brain Injury, Miami, FL. For more information, visit www.nabis.org OCTOBER 9-13 – ASNR/ACRM 2012 89th Annual Meeting: Progress in Rehabilitation Research, Vancouver, BC, Canada. For more information, visit http://acrm.org/meetings .

NOVEMBER 7-10 – National Academy of Neuropsychology 32nd Annual Conference, Nashville, TN. For more information, visit http://nanonline.org/ NAN/Conference/Conference.aspx 15-18 – 72nd Annual Assembly of the AAPM&R, Atlanta, GA. For more information, visit www.aapmr.org.

Fourth Annual Brains, Trains & Automobiles Seminar

The Westin Verasa - Napa Valley, California - May 3-5, 2012

Featured Speakers Include: David Ball William Dussault Dr. Mark Eastham Dr. Michael Freeman Dr. Gregory O'Shanick Robert L. Pottroff Dr. Mariusz Ziejewski

C. Micheal Bee - Moderator For Registration or further information visit www.media-rich.com or call 1.888.325.3044 Co-sponsored by Hill, Peterson, Carper, Bee & Deitzler, PLLC 500 Tracy Way, Charleston, WV 25311 20 BRAIN INJURY PROFESSIONAL

2012 Brain Injury Summit A Meeting of the Minds

Endorsed by:

January 9-11, 2012 Beaver Creek, Colorado

Craig Hospital invites you to join us in one of North America’s most popular winter venues for a state-of-the-art continuing education experience designed for professionals committed to enhancing the lives of persons with brain injury and their families.

Program Information: http://www.braininjurysummit2012.org/program.asp Registration: Registration is open, and space is filling up quickly! http://www.braininjurysummit2012.org/registration.asp

PROCEEDS TO Craig’s Patient Assistance Fund and the Brain Injury Alliance of Colorado

Hotel Information: For hotel information and reservations for conference hotels with discounted rates, go to the Summit website: http://www.braininjurysummit2012.org/default.asp#hotel Sponsorship and Exhibitor Opportunities: http://www.braininjurysummit2012.org/sponsorship.asp BRAIN INJURY PROFESSIONAL

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What Must a Lawyer Do When Representing a Person With Traumatic Brain Injury And That Person’s Family by c. Michael Bee, esq.

Note to readers: NABIS has educated attorneys about the services and supports that individuals with brain injuries require since its founding in 2003. One of the preeminent attorneys in the country is C. Michael Bee. Mr. Bee, as well as many of his colleagues who represent people with brain injuries and their families, has long been aware that these

I have been representing individuals with TBI and their families for 25 years. Ninety-five percent (95%) of my practice is devoted to working with this population. It is both challenging and exciting to help these people reclaim as much of their prior lives as possible.

When representing these individuals, it is necessary that the lawyer take a proactive role in assisting them and their families in making decisions about medical care, rehabilitation and return to work issues. Most families have no clue as to what should be done about these issues. Many attorneys are not qualified to help families with these problems and, if they are not qualified to do so, they should seek help from competent lawyers who regularly practice in the field of traumatic brain injury.

As medical science has advanced, more and more persons with severe brain injuries remain alive. Decisions must be made very quickly regarding competent medical care, treatment and proper rehabilitation.

Many lawyers are afraid to get involved in these issues because they lack the necessary knowledge to help these clients and their families and/or many are simply afraid to step in to assist these families with respect to medical treatment and rehabilitation because of ethical concerns. One of the major concerns for theses lawyers is the ethical concern that a lawyer should not help obtain competent medical care and/or arrange for medical examinations and/or treatment. Although each lawyer must consider the rules of professional responsibility in one’s state, most ethical codes require the attorney to provide competent representation for the client and, in fact, as stated by Thomas Metzloff, Professor at Law at Duke University in a letter to me dated 8/16/2011: “Obtaining a 22 BRAIN INJURY PROFESSIONAL

cases can sometimes take years to settle. During that time, people most often go without services and can regress or worsen. Mr. Bee discusses how attorneys can help stabilize this regression for their clients until the case is resolved. Case management is imperative in these cases whether it is fostered through the law firm or independently.

quality medical examination both to assist the client in obtaining good care as well as obtaining qualified medical opinion for use in the course of a legal proceeding is fully consistent with providing competent care.” Professor Metzloff concludes by stating: “It is my opinion that it is entirely appropriate for an attorney to advise and assist a client to receive quality medical care for treatment relating to the injuries that are part of the matter in which the attorney is representing the client if the attorney’s assessment is that the client will benefit from such treatment or evaluation.”

Although Metzloff ’s opinion applies in North Carolina, I have similar opinions from experts in legal ethics in many other states. It is wise that the attorney representing a person with a brain injury obtain such an opinion from an ethics expert in the state in which the client resides. Once you are satisfied that you are acting within your state’s rules of ethics how do you proceed?

I recently represented a person in the state of Kansas. John M was a competent career engineer working for an engineering firm in Wichita, Kansas. On April 24, 2009, John was performing an inspection on a building that was near completion. He walked into a dark room and was trying to find the light switch, when he fell through an opening in the floor eight to ten feet and landed on his head. He suffered a severe traumatic brain injury. He was in critical condition in the hospital’s intensive care unit for 18 days, at which time he was transferred to the Shepherd Center in Atlanta, Georgia for ventilator weaning and subsequent intensive brain injury rehabilitation.

Because John was injured at work, his medical treatment was covered and case managed by workers compensation. This should raise a red flag for any lawyer working with a person who

has sustained a traumatic brain injury because the interests of your client and the interests of the workers compensation insurance carrier are not always convergent. Frequently, the workers compensation carrier wants to take shortcuts both with medical treatment and care and rush the injured person back to some form of work as quickly as possible thus cutting off certain of the workers compensation benefits. It is in the best interest of the workers compensation carrier to urge the medical professional to declare that the injured person has reached maximum medical improvement so that medical payments and medical benefits, as well as earnings benefits, can be terminated.

When someone like John M sustains a severe traumatic brain injury and when you know that the interests of the workers compensation carrier and your client are going to be divergent at some point, you must help your client develop his or her own treatment team who can advocate for your client.

Within two months after John’s injury, I met with him and his wife, Lisa, at the Shepherd Center in Atlanta, Georgia. After getting the basic information from them so I could begin my work in his file, my last question to John was, “What do you want to do with the rest of your life?” As many of my clients have replied, John said “I want to go home to be with my family, I want my life to be as it was before this incident and I want to get back to work as a mechanical engineer, because next to my family and my religious beliefs, my work as a mechanical engineer is the most important part of my life.”

I told John and Lisa that I would help them try to achieve those goals. I told them that these goals could only be achieved if they listened to me and to the medical professionals who were treating them. I told them that I would put together a treatment team for them that would look after their interest as compared to what I expected the workers compensation carrier to do and say. Sure enough, as I expected, the workers compensation carrier was making arrangements for John to go back to his previous employer for a trial work endeavor, even before John left the rehabilitation center at Shepherd.

After working with individuals with traumatic brain injury for an excess of 25 years, I have come to realize that the worst thing that can happen to such a victim is to push too hard and too soon to return to work. When this occurs, the client, more often that not, will fail, and then the rehabilitation needs extend not only to the initial injury but to the psycho-social injury suffered when that person fails.

So, what did I do? I employed a nationally recognized neuropsychiatrist to evaluate and assess John neuropsychiatrically.

I employed a highly respected neuropsychologist to perform a neuropsychological evaluation on John and an outstanding vocational rehabilitation counselor to assist John with his endeavor to return to work.

After the evaluation by each of these renowned experts, we had a teleconference to determine how to best treat John’s medical conditions and difficulties as well as how to assist John in his endeavor to return to work. The neuropsychiatrist became John’s primary treating physician although workers compensation tried to obtain treaters in Kansas who were far less qualified.

All treatment decisions suggested by workers compensation were reviewed and John followed his treatment regimen. Later, another teleconference with the three experts occurred to try to determine the best possible placement for John so he could receive rehabilitative care with a focus on John getting back to work with his prior employer and hopefully back to work as a mechani-

cal engineer. The vocational expert was in charge of making all decisions with respect to such vocational rehabilitation, care and treatment.

The vocational expert literally spent hours conferring with John and Lisa to make the best possible choice for such vocational rehabilitation taking into consideration their family needs and desires. It was determined that John would enter a specialized TBI program in St. Louis, Missouri. The vocational expert worked with the program director and the therapists to lay out a specific program that would allow John to attempt to return to work at his prior employment. The vocationalist served as an interface both with the employer and the workers compensation carrier to facilitate this rehabilitative effort. I am proud to say that John has now successfully completed his vocational rehabilitation treatment and has started to work again with his prior employer. He is working on a part time basis and within the next few months is hopeful of returning to his full time employment.

Without the development of John’s own personal treatment team, both John and I believe he would not have achieved this successful outcome. Most importantly, I know John and his family thought I was crazy when I sent John to these evaluations and treatment to Richmond, Virginia, Detroit, Michigan and St. Louis, Missouri. I certainly cannot take all the credit for John’s success. His treatment team gave John the very best advice, his treaters did a remarkable job helping John in this endeavor, and most importantly, John listened to the professionals who were attempting to help him and did every single thing they asked of him and more.

Success with those who have sustained traumatic brain injuries is always facilitated by a multi-factorial approach. I am proud to say I tried my best to help John achieve his goals as he told them to me that day at the Shepherd Center. I am proud to have had the opportunity to work with John and his family and to know John and his family through this most difficult time in their lives.

I have been criticized by medical professionals, insurance companies, defense lawyers and the like for taking an active role in attempting to help my clients. I take their criticism willingly and I am happy to tell them that if they really cared about John and other similarly situated persons to come join hands with me to see if we can really make a difference in the life of that person who has been severely traumatically brain injured.

About the Author

C. Michael Bee, born in Parkersburg, West Virginia, 1950. B.A. Marietta College, 1971. J.D., West Virginia University College of Law, 1976. Admitted to West Virginia Bar 1976. Also admitted to U.S. District Court, Southern and Northern Districts of West Virginia. Member, West Virginia State Bar. Member, Law School and Admissions Committee, 1988. Member, The Association of Trial Lawyers of America and West Virginia Association for Justice. President, South Charleston Chamber of Commerce, 1987 and 1988. Served on the Board of Directors South Charleston Area Development Corporation; Board of Directors, South Charleston Convention and Visitors Bureau; served on the Board of Directors, West Virginia Brain Injury Association; Past President West Virginia Brain Injury Association; served on the Board of Directors of the National Brain Injury Association; President’s Council for National Brain Injury Association; Past Chairman of the Development Committee for the National Head Injury Foundation. Presently, serves on the Board of Directors of the Traumatic Brain Injury Litigation Group. Elected to Outstanding Young Men of America. Speaks throughout the country on legal issues and funding issues confronting the traumatically brain injured individuals and their families. Mr. Bee has also taught at the University of Florida as an adjunct professor in their professional certification programs.

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useful resources & services National Disability Rights Network Protection and Advocacy for Individuals with Disabilities Protection and Advocacy (P&A) System and Client Assistance Program (CAP). This nationwide network of congressionally mandated disability rights agencies provides various services to people with disabilities, including TBI. P&A agencies provide information and referral services and help people with disabilities find solutions to problems involving discrimination and employment, education, health care and transportation, personal decision-making, and Social Security disability benefits. These agencies also provide individual and family advocacy. CAP agencies help clients seeking vocational rehabilitation. For more information on P&A and CAP programs, contact the National Disability Rights Network at: www. napas.org or (202) 408-9514.

Traumatic Brain Injury Model Systems Funded through the National Institute on Disability and Rehabilitation Research, the TBI Model Systems consist of 16 TBI treatment centers throughout the U.S. The TBI Model Systems have extensive experience treating people with TBI and are linked to well established medical centers which provide high quality trauma care from the onset of head injury through the rehabilitation process. For more information on the TBI Model Systems, go to www.tbindsc. org/Centers/centers.asp or call the TBI Project Coordinator at (973) 414-4723 to find the center nearest you.

Brain Injury Association of America (BIAA) Chartered State Affiliates BIAA is a national program with a network of more than 40 chartered state affiliates, as well as hundreds of local chapters providing information, education and support to individuals, families and professionals affected by brain injury. To locate your state’s TBI programs that can be of assistance, visit the Brain Injury Association of America’s online listing of chartered state affiliates at www. biausa.org/stateoffices.htm, or call (800) 444-6443.

Social Security Disability Insurance (SSDI) & Supplemental Security Income (SSI) It is possible that your loved one may be entitled to SSDI and/or SSI. SSDI and SSI eligibility is dependent on a number of factors including the severity of the disability and what assets and income your loved one has. You should contact the Social Security Administration to find out more about these programs and whether your loved one will qualify for these benefits. For more information on SSDI and SSI, contact the Social Security Administration at www.ssa.gov or (800) 772-1213.

Centers for Independent Living (CIL) Some families have found that it is important to encourage their loved one with a TBI to continually learn skills that can allow them to live independently in the community. The CILs exist nationwide to help people with disabilities live independently in the community and may have resources to help your loved one reach a goal of living alone. CIL services include advocacy, peer counseling, case management, personal assistance and counseling, information and referral, and independent living skills development. For more information on the CIL system, contact the National Council

on Independent Living at www.virtualcil.net/cils or (703) 525-3406.

Ketchup on the Baseboard: Rebuilding Life After Brain Injury Book chronicles Carolyn Rocchio’s son’s brain injury over 20 years from coma care to rehabilitation and living in the community. Excellent resource with articles on special topics for families on traumatic brain injury advocacy, information and support. www.lapublishing. com or (919) 556-0300.

The Essence of Interdependence: Building Community for Everyone By exploring the roles, expectations, behavior and stereotypes of people with and without disabilities, Condeluci shows how to support the development, growth and independence of people with disabilities in their communities. www.lapublishing.com or call (919) 556-0300.

Managing Care and Services after Brain Injury: A Workbook for Families and Caregivers Families become the real “case managers” for services in the community over time, whether is it a son, daughter, parent, sibling, or spouse who has a brain injury. This workbook teaches families how to communicate effectively, set goals and plan for the future, locate and coordinate services, make referrals that get results, advocate for services and funding, and evaluate what’s important. Every family can use information in this workbook to cut through barriers, find resources, locate services, pull together care plans and build a future. www.lapublishing.com or call (919) 556-0300.

A Change of Mind: One Family’s Journey Through Brain Injury Book on marital stress and adjustment for families when a spouse has a brain injury. Discusses emotional trauma for family, grieving, mourning, parenting, and caregiving after severe head trauma. www.lapublishing.com or call (919) 556-0300.

Overcoming Grief and Loss After Brain Injury Grief is a normal reaction to loss. This practical workbook and manual helps family members, survivors, and clinicians identify the symptoms and phases of recovery from brain injury. It is filled with personal examples, exercises and information that address cognitive, social, behavioral and functional changes. It can be used as a self-help workbook or with a professional. www.lapublishing.com or call (919) 556-0300.

Brain Injury: A Guide for Families This popular book authored by Dana DeBoskey, PhD and the staff of the Tampa General Rehabilitation Center, addresses the emotional and behavioral problems of both the patient and the family. It is written in a straightforward, easy to understand manner with resolution strategies for common problem areas as well as real-life examples of management situations and coping techniques. For more information, visit www.braininjurybooks.com or call (713) 526 6900.

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Coping Styles of Individuals and Families After Traumatic Brain Injury

by Roberta DePompei, PhD There are a variety of coping styles (avoidant, rational, emotional, internal, external, etc) that families employ after a medical crisis occurs in their lives. The information that follows is based on informal surveys that were completed with families who had a member who had experienced a traumatic brain injury (TBI). The responses were grouped into five categories: cognitive; psychological; support system users; spiritual and physical. A summary of the types of coping they employed and examples of each follow.

thinking. They find small improvements in their family member and believe that positive outcomes can happen, even if a return to “normal” is not possible. Examples of psychological coping behaviors include: • Take up a cause (your child’s) • Count your blessings • Take one day at a time • Replace negative thoughts with positive ones • List family member’s strengths • Realize you are not alone • Find the improvements being made

Cognitive Individuals who cope cognitively locate and use information as a support. They use resources such as the internet and websites to find the most recent information available. They also may contact experts who they believe can help. Examples of cognitive coping behaviors include: • Read books and pamphlets about TBI • Call Brain Injury Associations (National and State) for information • Talk to families with a member who has TBI • Attend workshops • Listen to audio and videotapes • Access internet links for information

Spiritual Individuals who cope spiritually place their trust in a higher power. They often state that control is “out of their hands” and they have comfort in that belief. Examples of spiritual coping include: • Talk to priest, minister, rabbi, shaman • Read devotionals • Read/discuss the Bible/Koran • Read inspirational stories (many like Reader’s Digest) • Spend time meditating • Visit peaceful places – woods, lake, seashore

Psychological Individuals who cope psychologically use internal thought processes to strengthen positive attitudes and modify negative

Support Systems Individuals who cope by using external supports seek the counsel and attention of others. They find sharing their burdens with

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others and gathering support from them lessens the impact. Examples of using support systems include: • Participate and socialize with friends (old and new) • Attend church (to be with like minded persons and to receive personal support from them) • Count on family (when the family was supportive prior to the injury/illness) • Join support groups focused on TBI • Join heterogeneous support groups (Coalition for Handicapped Students) • Participate in community activities (scouts, YMCA, school board, intramurals)

Physical Individuals who cope physically find that actively participating allows for reduction of stress and tension. From those who cook and bake to those who involve themselves in sports activities, these individuals use increased physical activity to enhance feelings of well being. Examples of physical coping include: • Cry, laugh, use sense of humor • Exercise • Eat well • Rest • Take long walks • Spend personal time with spouse or alone • Maintain normal routine(even though we enjoyed that vacation, there is a feeling of well being to return home) • Listen to music • Run, jog • Clean, keep house (interesting that some of us organize and clean during stressful events-seem it is something we can control when there are aspects of our lives that we cannot control).

As we all have different coping styles, we sometimes do not recognize those that are different from our own. When we believe that if another family member or colleague is not reacting as we do that they are uncaring or self centered. In reality, we can use a variety of healthy coping mechanisms aid us to handle the changes in our lives. Recognizing the different styles can help us through the difficult times and allow us to deal with others without believing that they are not dealing with their issues as they should.

About the Author

Roberta Depompei is a distinguished professor and director of the School of Speech-Language Pathology at the University of Akron, located in Akron, Ohio. Her major area of research and interest is in cognitive-communicative challenges to the individual with brain injury and the impact of brain injury on the family system. She is an advocate for the needs of youths with brain injuries and their families and serves on numerous national task forces and committees.

Roberta was awarded the Sheldon Berrol, M.D. Clinical Service award

by BIAA in July, 2002. In March 2004, she received the Robert L. Moody Prize for Distinguished Initiatives in Brain Injury Research and Rehabilitation. Roberta is also a Fellow of the American SpeechLanguage Hearing Association and was awarded the first Legend Award from the North American Brain Injury Society in October, 2008. To learn more about Roberta’s work, see Coping Styles, which she developed for this program.

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Finding the voice of advocacy through the silence of brain injury.

by Nadine Lund Our daughter was a vibrant, social, high achieving “A” student at Monarch High School in Louisville Colorado. On April 14 of 2007, she sustained a blow to her head while playing in a national collegiate recruiting basketball tournament that resulted in a brain injury. Her grades the following year suffered and her self confidence was continually shaken by comments like” shake it off ” or “she looks fine, she must be faking it.” Brain injury is a silent disease, people with a brain injury struggle moment by moment, and experience loss in every aspect of their lives: physically, psychologically, socially and financially. Our family became isolated and confused. Through our TBI Trust Fund Care Coordinator we found our voice to advocate through medical and school systems.

In the spring of 2009, our Trust Fund Care Coordinator asked me to testify on a piece of legislation so that others suffering from brain injuries could receive the necessary help and support provided by the TBI Trust Fund. It was the first time in my life that I had ever contributed to any legislation or even entered the halls of our State Capitol. After the bill passed, I heard that my testimony put a “face” to the bill and as a result, the waiting list for those needing TBI Trust Fund services was erased. It was at that point, I realized that my voice was a powerful tool to bring about change in the community. The following fall I was introduced to the Family Leadership Training Institute and my life is forever changed.

The Family Leadership Institute (FLTI) is a proven curriculum that inspires, trains, and empowers individuals to become effective leaders on behalf of children, youth and families. FLTI utilizes the training methods developed by the Parent Leadership Training Institute (PLTI) of Connecticut. Elaine Zimmerman, the Director of the Connecticut Commission on Children and founder of PLTI, created this curriculum over 20 years ago. The curriculum features twenty weeks of training that is based on the premise that the fam28 BRAIN INJURY PROFESSIONAL

ily is a forgotten constituency when it comes to health policy for children and youth. Through this training, family members are taught how to develop actionable plans to become better advocates for children and communities. FLTI teaches participants how to speak out and engage policymakers on issues that help improve the community. FLTI offers stimulating educational sessions that boost leadership skills and help participants address areas of concern, such as accessible healthcare, gaps in educational achievement, neighborhood safety, nutrition and parent involvement. In my case, FLTI helped me participate in the development of a concussion management protocol in our local school district. FLTI is not only for the brain injury community but for all individuals who want to make a change for their community.

Brain injuries so often put the survivor and family members in a place of silent and isolating suffering. It is easy to become preoccupied with navigating medical treatments, schools, and service systems. While we may not be able to eliminate brain injuries anytime soon, through a chorus of all our voices we can bring about change regarding how brain injury survivors are viewed, and through advocacy we can create effective partnerships to improve the lives of everyone in the TBI community.

About the Author

Nadine Lund is currently a Colorado FLTI Statewide Liaison, supporting the implementation of FLTI. She is also a trained Family Leader and Facilitator for the Family Leadership Training Institute (FLTI), a civics family leadership training program. Nadine serves locally on the Colorado Brain Injury Advisory Council and has conducted numerous advocacy trainings for TBI Survivors and Family members. She also serves nationally on the Planning Committee for the TBI Leadership Meeting.

book review

The Water Giver the story of a mother, a son, and their second chance New York Simon & Schuster, 2009.

Every family’s pathway when a loved one sustains a traumatic brain injury is unique and similar at the same time. The Water Giver tells the story of one family’s struggles after their son, Ryan, is injured in what at the time seemed to be a minor skateboarding incident.

Ryan’s Mom is the “water giver”, the nurturer, the soother, the comforter, so named by her son when he was emerging from coma.

The Mom who, with Ryan’s father, guides her son through hospitals, brain injury programs, community services, and into college. The rocky road of brain injury recovery becomes a path of most resistance, and a path that every family has to negotiate in their own unique way.

Joan Ryan shares her extraordinary story and her inner turmoil with a renewed understanding that life truly does go forward, especially if you have heart, humor, and family and friends. Perhaps Ryan says it best “I think my accident changed my mom more than it changed me. First I have to say she was a good mom before the accident…I’ve always loved my mom even when she was a little crusty and annoying. I have a great mom, and, of course, she is very lucky to have me as a son, even if I am a pain in the butt (ha-ha).”

About the author:

Joan Ryan is an award-winning journalist and author. She is a pioneer in sports journalism, becoming one of the first female sports writers in the country. Her first book, Little Girls in Pretty Boxes: the Making and Breaking of Elite Gymnasts and Figure Skaters, was named by Sports Illustrated as one of the Top 100 Sports Books of All Time.

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bip expert interview Marilyn Price Spivack

Marilyn Price Spivack is a cofounder, past president of the National Head Injury Foundation. She is a Neurotrauma Outreach Coordinator at Spaulding Rehabilitation Hospital/ Boston.

Since founding the National Head Injury Foundation, what kinds of advances have you seen in supports and services for individuals with brain injuries and their families?

ized brain injury services if Medicaid and Medicare are the only source of funding?

did there was little or no hope. My daughter was among them.

What has your daughter, Debbie, taught you over the years?

There have been many advances across the continuum of care depending on the state in which one resides. The systems of triage, trauma services, acute care, diagnostic technologies, neuropharmacology and rehabilitation have so advanced.

Many more lives are saved every day and severity of disability for many has decreased which has enabled individuals to regain greater function. However, this is a cautious statement since recovery depends upon many factors, including where in this country is one injured? Or what is the availability and access to the state of the art of treatment for TBI? Or what type of insurance or lack of does the individual have? Specifically concerning to me is the access to acute rehabilitation wherever one might be injured, and of the resources the patient might and might not have to allow such access. All needed services are shrinking along with length of stay. When the specialized TBI programs in acute rehabilitation diminish, so do the teaching, training and research opportunities diminish. Then where will the needed specialists be if training is so limited? We just can’t afford to let that happen. Then the final question to be asked, what will happen to all our special-

So very much! She leads me! She is among the pioneers of people who have survived in a period when very few did.

Deb, like Carolyn Rocchio’s son Tim, had the best available care. From a small community hospital where we were told she should die, we took charge and had her transferred 10 hours later to the Massachusetts General Hospital. Time was not on our side, there were no helicopters to transport emergently back then and trauma care was not what it is today. (As you know, my son was killed 18 months later and we had another issue to address, no appropriate triage.) However, we have all benefited from what I learned from Deb. Her experiences and her needs, family needs, drove the creation of the National Head Injury Foundation (NHIF). Every decision I made in leading the NHIF was based on Debbie’s needs, my frustrations and the directions and services that were so lacking and/or non-existent altogether.

The first lesson I learned was the glaring lack of professional and public understanding of head injury. Very few specialized services had even been created for individuals who sustained severe head injuries. Sadly, there was little need at that time since few survived and for those who

You’ve been called the “God Mother of Brain Injury”. If you had a magic wand what would you do today to improve the lives for people with brain injuries and their families?

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It is a very long wish list and I do not have a platinum wand. But first , I would like to know how that there will be a stronger coordinated advocacy effort to speak to the broad issues and challenges caused

by TBI, BIAA, NASHIA, NABIS or ACRM cannot be as effective as its potential without increased numbers of voices and sufficient resources to carry out a sustained and persistent effort. While each of the organizations named above has its unique mission, in the world of advocacy we need a strong unified voice. We need to all “speak as one”.

Secondly, access to the right services and supports in a timely basis is critical to good outcomes. I have witnessed daily over the past 12 years at Spaulding Rehabilitation that early interventions, expertise, technologies and time really make a difference in the future lives of those so injured.

It is painful to know that most do not have such access to the fine specialty rehabilitation facilities.

Thirdly, increasing community-based supports, residential and independent living services, and the TBI Club House models

After brain injury...

Rebuilding lives, one step at a time As a leading provider of rehabilitative brain injury services for 20 years, Bancroft Brain Injury Services offers a multi-disciplinary approach to help people with traumatic brain injuries regain their independence and successfully reintegrate back into their communities.

Bancroft Brain Injury Services is also pleased to be a participating contractor in the U.S. Department of Veterans Affairs’ Assisted Living for Veterans with Traumatic Brain Injury Pilot Program, which provides a dedicated funding source to cover the cost of private rehabilitation programs.

For more information or to arrange a tour of our facilities, call us today at (800) 774-5516 or visit www.bancroft.org.

need to be funded by Medicaid and HCBW waivers instead of day programs that are not designed to serve the needs of individuals months and years after TBI. There should be a life after rehabilitation which allows people to reach their goals in an environment that fosters confidence, growth and social networks. Programs like Community Works in Kansas, or housing opportunities as developed by Accessible Space, or case management services over a lifetime for those without family advocates.

Fourthly, an appropriation level that makes sense at the federal level so that states can build infrastructures to serve people better. We also need a coordinated effort within government to enhance and coordinate research opportunities and encourage this generation of young talented clinicians and researchers to stay in the field.

Fifth, we need to examine the issues that impact children and adolescents with brain injuries and consider the impact of brain injury as a chronic disease process as young people get older.

I appreciate the invitation to be interviewed and I want to thank all who stood with us in building this movement and I want to encourage this current generation of clinicians to get involved with the people whose lives you will change and have changed already. It does make a difference! Just remember this fact that if your mentors and teachers didn’t join us in the 1980’s, there might not be the field you work in today. We need everyone’s help to keep moving forward!

NATIONALLY ACCREDITED PROGRAMS Bancroft Brain Injury Services is fully accredited by CARF, the Commission on the Accreditation of Rehabilitation Facilities. © 2011 Bancroft. All rights reserved

Holding Standards High.

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 Mark your calendars for two important NABIS anniversary events! The 10th Annual Conference on Brain Injury and the 25th Annual Conference on Legal Issues in Brain Injury will be held September 1115, 2012, at the InterContinental Hotel in Miami, Florida. Medical conference chair Tina Trudel, PhD, is already hard at work assembling internationally recognized panels and speakers for what promises to be an exceptional program with a special focus on brain injury and technology. For the legal conference, co-chairs Simon Forgette, Kenneth Kolpan and Bruce Stern have begun to craft a varied educational program featuring some of the leading trial attorneys and medical experts in North America.

At our September annual meeting, Dr. Brian Greenwald was named as the newest member of the NABIS board of directors.

Dr. Greenwald is currently Assistant Professor at Mount Sinai School of Medicine and the Medical Director of Brain Injury Rehabilitation at the Mount Sinai Rehabilitation Center in New York City and Co- Project Director of the New York Traumatic Brain Injury Model System. NABIS is honored to welcome Dr. Greenwald as part of our leadership.

NABIS is pleased to announce the launch of our new upgraded website! Far more than simply an updated user interface, the new site allows for the creation of special interest groups on various brain injury topics and new platforms for communication and exchange. In addition, the site provides the NABIS administrative office with the membership management tools necessary to customize membership types and membership applications, and generate automatic reminders and renewal notices. Plus, for NABIS members, an enhanced membership area contains all of the back issues of Brain Injury Professional – that’s over 1100 pages of original content unavailable anywhere else!

Please visit the site at www.nabis.org.

Brain Injury Association of America BIAA is proud to introduce the ACBIS Alliance Award, recognizing and honoring 32 BRAIN INJURY PROFESSIONAL

brain injury service providers that support and encourage Academy of Certified Brain Injury Specialists certification for their staff.

The following companies have qualified and are now participating in the Alliance: Robin Hill Farm, Special Tree Rehabilitation System, LifeBridge Health, Pate Rehab and the West Virginia Traumatic Brain Injury Services at the Center for Excellence in Disabilities. The 7th BIAA Brain Injury Business Practice College will be February 21-23, 2012, at the Platinum Hotel and Spa in Las Vegas, Nev. The program will cover the continuum of care, including the ever-popular case study, round-table discussions and networking opportunities. Check www.biausa.org for details or call Marianna Abashian, director of Professional Services, at 703-761-0750 x636. BIAA is pleased to welcome Amy Colberg as our new director of Government Affairs, effective December 12, 2011. Amy will continue to pursue BIAA’s advocacy objectives with respect to rehabilitation as an essential benefit under the Affordable Care Act; coverage of cognitive rehabilitation by TRICARE and other payers; appropriations for federal TBI programs, including the development of postacute treatment guidelines; and reauthorization of the TBI Act in 2012. Planning is also underway for Brain Injury Awareness Month with the theme of “Brain Injury: Anywhere, Anytime, Anyone.”

Defense Centers of Excellence The Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury, in collaboration with the Department of Veterans Affairs, has developed a substance use disorder (SUD) tool kit to assist health care providers with related clinical practice guidelines. The SUD tool kit includes a pocket guide to help providers treat patients and improve outcomes by assisting with symptom recognition, treatment and management. It also has a booklet covering medication-assisted treatment for alcohol dependence to educate patients and empower them with the knowledge to make informed choices regarding treatment. The tool kit also has a brochure for family members with support facts on substance use disorder and resources. The SUD clinical support tool kit is scheduled to be posted

on U.S. Army Medical Command’s online shopping cart by late December of 2011.

For more information on DCoE and toolkit resources, please visit www.dcoe.health.mil.

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 categories: 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.

The program committee is hard at work developing a world-class program covering a variety of topics ranging from neurobiology to neurorehabilitation and from the theoretical to the applied. Invited speakers include internationally renowned experts in the field including: Steven Laureys, Erin Bigler, Nathan Zasler, Tom McMillan, Ian Baguley, Sir Graham Teasdale, Jeffrey Kreutzer, Ronald Savage, John Corrigan, William McKinlay, Jennie Ponsford, and many, many others. A preliminary program will be posted on the IBIA website by the end of September. In addition to the scientific program, IBIA is planning a number of social events, including a Gala Banquet at the National Museum of Scotland, as well as a post-congress excursion to Glasgow. For more information, visit www.internationalbrain.org.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS NASHIA held its annual State of the States conference in Kansas City, Missouri October 3 to 7! Colleagues representing key State and federal government employees, consumers, Brain Injury Association of America chartered State affiliates, and other professionals responsible for administering an array of brain injury prevention, rehabilitation, community integration programs and services, assembled for this conference. The program offered pre-conference on concussion, plenary and workshop sessions on a variety of topics covering emerging federal and State issues and promising practices on service delivery. A highlight of the conference was the opportunity for information sharing among participants. Visit our website at www.nashia. org to view individual presentations.

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 focused on the re-authorization of the TBI Act. The Act authorizes three main areas: •

•

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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.

Suggestions are being received for possible changes as we develop the language for the re-authorization. Join NASHIA and let your voice be heard by contacting us at www.nashia.org and thank you for your continued support!

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legislative roundup I am a firm believer in the people. If given the truth, they can be depended upon to meet any national crises. The great point is to bring them the real facts.

- Abraham Lincoln

Although Congress was called to act on the budget crisis, the members of the Joint Select Committee on Deficit Reduction (“Super Committee”), established by the Budget Control Act of 2011, were unable to develop a package of deficit reduction strategies by the Nov. 23 deadline. The committee was charged to make recommendations for reducing the federal budget in the amount to $1.2 - 1.5 trillion over the next ten years. The Budget Control Act stipulated that if the Super Committee failed to produce a bill to reduce the deficit, there will be across-the-board cuts sufficient to reduce the deficit by a total of $1.2 trillion, starting in 2013.

The legislation provided a formula for establishing specific cuts, known as sequestration. A large number of mandatory programs are exempt from sequestration, including Social Security, Medicaid, federal retirement programs, and many programs that assist those with low incomes.

In general, unless a program is specifically exempted by such rules, then it is assumed that it would be included in the cuts. This “sequestration” process means deep cuts for a number of discretionary health, disability and education programs.

Meanwhile, Congress had yet to pass the FY 2012 appropriation bills for nine federal agencies at the time of this article, 34 BRAIN INJURY PROFESSIONAL

having extended federal funding through December 16, 2011, for these agencies.

The new continuing resolution continues funding for most federal programs at 1.503 percent below FY 2011 levels. It is anticipated that these remaining appropriations bills will be passed as a single “omnibus” package prior to the end of the calendar year and will include programs administered by the Departments of Health and Human Services, and Education.

During October, the Institute of Medicine (IOM) issued two reports of interest to brain injury advocates. The IOM released the report “Cognitive Rehabilitation Therapy for Traumatic Brain Injury: Evaluating the Evidence”, which was developed at the request of the Department of Defense to determine whether existing research on cognitive rehabilitation therapy provides a conclusive evidence base to support using such therapy for members of the military and veterans with brain injuries. The report noted that while cognitive rehabilitation interventions are promising approaches, additional research is needed to further define, standardize, and assess the outcomes of cognitive rehabilitation interventions.

The IOM also released the report, “Essential Health Benefits: Balancing Coverage and Cost”, to assist the Secretary of Health and Human Services (HHS) in making recommendations on the criteria and methods for determining and updating the essential health benefits package which private health insurance plans are to cover. The Patient Protection and Affordable Care Act (ACA) of 2010 defined the essential health benefits package, which includes mental health and substance use disorder services including behavioral health treatment; rehabilitative and habilitative services and devices; preventive and wellness services and chronic disease management; and pediatric services including oral and vision care.

To help uninsured Americans obtain health insurance, in accordance with the ACA, private health insurance plans will be offered to low- and moderate-income individuals and small business employ-

ers through state-based “purchasing exchanges”. These insurance plans must also cover the essential health benefits package as defined by HHS. Every state is to have an Exchange by 2013, or the federal government will assume that responsibility on behalf of the state.

While the HHS has been busy implementing provisions of the ACA, there are also efforts to repeal certain provisions. The House Energy and Commerce Subcommittee on Health approved a bill (H.R. 1173) to repeal the Community Living Assistance Services and Supports (CLASS) Program, which was to establish a national, voluntary insurance program for purchasing community living services and supports. Prior to this action, the Administration announced that it was suspending CLASS implementation due to concerns about its long-term sustainability. Aging and disability advocates have urged the Administration to continue its work to ensure that long-term services and supports be an option.

Finally, the U.S. Supreme Court agreed to hear a challenge to the ACA with regard to whether the provision requiring most Americans to obtain health insurance by 2014 is constitutional. 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. The Court will also hear arguments as to whether the rest of the law can stand if the mandate is found unconstitutional; whether the issue can be decided before the law takes effect; and whether Congress is improperly coercing states to expand Medicaid. The court’s decision will likely come in June.

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.

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.

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Neurobehavioral Rehabilitation

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

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