BR A IN INJURY professional vol. 5 issue 2
The official publication of the North American Brain Injury Society
Hidden Issues in Brain Injury Mi ld Traumatic B ra i n I n j u r y : I d e n t i f i c a t i o n, t he Key t o Prevent ing Social Failure D iffer e nces A mong Y o u n g a n d O l d N u r s i n g Home Resident s w it h TBI T r a um atic B r ain In j u r y a m o n g ‘ C i t i z e n S o ldiers’ T r a um atic B r ain In j u r y a s a S o u r c e o f F i nancial St rain and Bankrupt cy: What ’s t he evid e n c e ?
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contents
BRAIN INJURY professional vol. 5 issue 2, 2008
The official publication of the North American Brain Injury Society
north american brain injury society
departments 4 Executive Vice President’s Message 6 Guest Editor’s Message
chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family liason Julian MacQueen executive vice president Ronald C. Savage, EdD executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Joyce Parker graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes
28 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 Joyce Parker
30 Legislative Round-up 32 Non-profit News B R AIN INJURY professional vol. 5 issue 2
The official publication of the North American Brain Injury Society
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
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THEç+EYçTOç0REVENTINGç3OCIALç&AILURE $IFFERENCESç!MONGç9OUNGçANDç/LDç.URSINGç(OMEç2ESIDENTSçWITHç4")ç 4RAUMATICç"RAINç)NJURYçAMONGç³#ITIZENç3OLDIERS´ 4RAUMATICç"RAINç)NJURYçASçAç3OURCEçOFç&INANCIALç3TRAINçANDç"ANKRUPTCY ç 7HAT´SçTHEçEVIDENCE BRAIN INJURY PROFESSIONAL
EDITORIAL ADVISORY BOARD
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editorial inquiries
features 8 Mild Traumatic Brain Injury: Identification, the Key to Preventing Social
Failure By Wayne A. Gordon, PhD, Margaret Brown, PhD 12 Differences Among Young and Old Nursing Home Residents with TBI By Sarita L. Karon, PhD and Jo-Anne C. Lazarus, PhD 18 Traumatic Brain Injury among ‘Citizen Soldiers’ by John Driscoll, Vice President, National Coalition for Homeless Veterans 24 Traumatic Brain Injury as a Source of Financial Strain and Bankruptcy:
What’s the evidence? by William Hollingworth, PhD, Jeffrey G Jarvik, MD, MPH
Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org Email: contact@nabis.org
advertising inquiries Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787
national office
North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2008 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com
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executive vice president’s message
Ronald Savage, EdD
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BRAIN INJURY PROFESSIONAL
Said the little boy, “Sometimes I drop my spoon.” Said the old man, “I do that too.” The little boy whispered, “I wet my pants.” “I do that too,” laughed the old man.” Said the little boy, “I often cry.” The old man nodded, “So do I.” “But worst of all,” said the boy, “it seems Grown-ups don’t pay attention to me.” And he felt the warmth of a wrinkled old hand. “I know what you mean,” said the old man. - - - - Shel Silverstein We know that aging changes us in many of the review articles in this issue addresses ways, physically, cognitively and spiritually a particular topic and sets the agenda for to name a few. None of us want the aging further research. This topic is significant to process speeded up in our adult years. We all of us in multiple ways, not only for our want our abilities and skills to continue patients, but also for ourselves. We need to as long as possible. Many of us entering look a brain injury through an aging teleour middle and later decades are already scope and see as far ahead as possible into complaining about aching knees that were the future. Might we need to develop speoriginally injured in high school sports and cialized brain injury supports and services never really bothered us until we got “old”. that parallels the good work in Alzheimer’s (Think about it, how many friends do programs? Will we need to investigate you know with knee replacements?) Hu- newer cognitive enhancing medications as mans get older despite all the good things preventive treatment? Do we need to betwe do for ourselves. And what about all ter prepare families about the aging issues those missing car keys or cell phones or lost commonly found after brain injury rather names many of us confront on occasion? than take a “wait and see” approach? And When we forget something it puts a little what about our Boomer Generation – still fear into all of us. Obviously, losing the active in sports, riding motorcycles (TBI functioning of one’s knee is one thing, but on the increase!), and still thinking that “60 losing one’s mental faculties is even more is the new 40”? It’s not just falls with TBI frightening. Now we add a brain injury to in the elderly that we need to think about. the mix…what happens now? Does a brain Aging is a whole new arena in brain injury injury sustained earlier in life accelerate the treatment, services and supports. NABIS wants to particularly recognize aging of the brain, just like our earlier knee Mr. Robert L. Moody who created and injury worsens as we get older? Drs. Gordon, Dijkers, Abreu and Brown supports this tremendous opportunity for assembled a national team at the Spring clinicians and scientists each year and to 2008 Galveston Brain Injury Conference. thank Dr. Brent Masel who orchestrates The focus over this year and next will be to the meetings with his exemplary leadership further investigate the relationship between and extraordinary intellect. brain injury and early dementia, as well as expanding our knowledge of brain injury Ronald Savage, EdD in our ever growing older population. Each
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guest editor’s message
Debra Braunling-McMorrow, PhD On Saturday Oct. 6, 2007 I happened to be on a flight from St Petersburg, Florida when I ran across the Epilogue of Deborah Carey in the St. Petersburg Times written by Stephanie Hayes (see sidebar opposite). It seems fitting that we reprint her story as the opening to this special edition on hidden issues in brain injury out of respect for Ms. Carey and her family and the many persons living with brain injury. Ms. Carey’s life story is not unusual but rather grounds us in continuing to challenge ourselves in making a significant difference in the lives of persons with brain injury. Many years ago, as a clinician, I realized that many people with moderate to severe brain injury, often had to live below the means they were accustomed to… sometimes at the poverty level. As a result of their brain injury, they had less income, had depleted their savings, and/or encountered significant medical expenses. I am honored to have been asked to serve as guest editor for the Brain Injury Professional. My intent is to represent hidden issues in brain injury. They are issues that we know, yet often may not think about or write about. I could have picked a number of topics, and in sifting through the possibilities, I selected authors to provide a snapshot of unidentified TBI, persons with TBI in nursing facilities, citizen soldiers, and those in bankruptcy and poverty. In particular, I wanted to invite authors who mostly are not experts in brain injury but rather experts in their 6
BRAIN INJURY PROFESSIONAL
own fields who are from the outside looking in. In doing this, I hoped to provide some diverse perspectives in the ongoing challenge of finding better ways to serve and support those with long term disability as a result of brain injury. Many of us have been trying to keep up with the abundance of stories in national and local newspapers and on television. While most of the stories have been about TBI as the signature injury of Operations Iraqi Freedom and Operation Enduring Freedom (Afghanistan), these stories have opened a window of opportunity to represent the needs of all persons with brain injury. The Wall Street Journalist, Thomas Burton provided such a view in highlighting the research of Dr. Wayne Gordon and his colleagues in the January 29, 2008 story “Hidden Trauma: Studies Cite Head Injuries as Factor in Some Social Ills.” The lead article for this edition is provided by Dr. Gordon and Dr. Brown. Their focus is on unmasking hidden or mild injury that may lead to social failure among children with learning disabilities, and adults with chronic alcoholism and homelessness. Earlier screening and identification may result in circumventing potential post-TBI failure. Dr. Karon and Dr. Lazarus use the Minimum Data Set (MDS) from the Centers for Medicare and Medicaid Services to study issues of care as they relate to younger persons with TBI who are served in nursing homes. Understanding how the needs of persons vary by age and disability results in suggesting more targeted services and activities to meet their unique needs. With brain injury as the signature injury of the wars in Iraq and Afghanistan, John Driscoll from the National Coalition for Homeless Veterans provides timely insight into brain injuries among “Citizen Soldiers”, the Reservists and members of the National Guard. He provides recommendations for private and public providers to work in collaborative partnership with Veterans Affairs Facilities to ensure adequate education, screening and supports to those that may have been missed. Dr. Hollingworth and Dr. Jarvik, bring light to the often uncounted and underrepresented financial burden of a brain injury on individuals and their families. The authors suggest that much needed medical, auto and disability insurance policy reform should im-
prove more than just the financial health of patients. Finally, Dr. James Schraa, who has served persons with brain injury most of his life as a neuropsychologist and relentless advocate, provides insight and comment on current public policy. I am grateful to Dr. Ron Savage and Chas Haynes for their support and assistance in guiding me from the beginning in creating this special edition. I want to thank the North American Brain Injury Society for the opportunity to serve as a Guest Editor for this issue. I also want to thank all the contributors who made my job easy and who were willing to share their expertise in helping to identify, support, and advocate for persons with brain injury and their families, for that task is never ending. Finally, I want to thank Deborah Carey and her family for allowing their story to be told.
Debra Braunling-McMorrow, PhD
About the Guest Editor
Dr. Debra Braunling-McMorrow is Vice President of ABI Service Diversification for The MENTOR Network, a national leader in brain injury neurorehabilitation, neurobehavioral rehabilitation and long-term community supports. She served as Vice President of Quality Assurance for the Mentor ABI Group, as well as lead operations for the Center for Comprehensive Services for 12 years, a member of The MENTOR Network. She has designed and continues to direct the Mentor ABI Group’s outcome and quality measurement systems. She serves on the board of the North American Brain Injury Society and on the Federal Legislative Action Committee for the Brain Injury Association of America. She was the recipient of the 2007 NABIS Clinical Service Award and is a CARF surveyor for Medical Rehabilitation Programs. Dr. McMorrow is the past chair of the American Academy for the Certification of Brain Injury Specialists (AACBIS) and has served on the Brain Injury Association of America’s board of executive directors as the Vice-Chair for Program Outcomes. Additionally, Dr. McMorrow has served on several national committees and editorial boards as well as on a number of Peer Review Panels including for the U.S. Department of Education NIDRR and the Department of Health and Human Services HRSA. Dr. McMorrow has published in numerous journals and books and has presented extensively in the field of brain injury rehabilitation. She has been working for persons with brain injuries for over 25 years.
One Crash Set Her Life’s Direction; Another Ended It St. Petersburg Times – Saturday, October 6, 2007
Epilogue / Deborah Carey BY STEPHANIE HAYES
NEW PORT RICHEY – More than anything, Deborah Carey wanted stability. To have a nice apartment where she could snuggle with her black cat, Shadow, and rebuild her life. But she was fighting a brain that wouldn’t allow it. “She had the body of a woman, and yet it’s like, I always wanted her to be better in her thinking,� said her mother, Carol Ritchey. “But that was her problem. She just couldn’t.� *** Ms. Carey liked to impress those she met by sharing her most exotic life detail: she was born in Honolulu, Hawaii, at an Army hospital when her dad was in the service. Those were happy times. Ms. Carey would reminisce about her life on the island, before her parents’ devastating divorce. As a teen, she was outgoing and had girlfriends by the dozen. She also had a major wild streak from the second she hit puberty. Before seat belt laws, she rode with a friend in a convertible. They crashed.
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She was 16. Her brain was injured beyond repair. She started having seizures and taking pills to control them. She lost her common sense and decision-making skills, her mother said. She became forgetful. “You would talk to her just two minutes and you would realize maybe she wasn’t just like you and me, said Ritchey, 66. Ms. Carey had a string of bad relationships, some violent, said her mother. She was arrested dozens of times in Florida, mostly on battery charges. She had a son, but lost contact with him years ago. And last year her only brother, Rex, died. Shooting pool, playing cards and fishing made Ms. Carey happy. She didn’t have much, but she routinely gave her things away. She lost a typewriter and a microwave because people asked to borrow them. She attracted bad people, her mother said. She just wanted friends. She had her mother.
***
They spoke on the phone every day. When Ms. Carey got into trouble, she’d call her mother. When someone paid Ms. Carey a compliment, Ritchey was the first to know. She was living in an Oldsmar hotel, but she considered New Port Richey, where her mom and stepfather live, her home. She didn’t work, and spent her days talking to people on the street or grocery shopping. On Saturday, she walked to a drugstore to pick up seizure medicine and buy eyeliner. She stepped into the path of a sport utility vehicle driving on Tampa Road. Her head and body once again were injured, she died the next day. She was 48. Reprinted with the permission of the St. Petersburg Times
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BRAIN INJURY PROFESSIONAL
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Mild Traumatic Brain Injury: Identification, the Key to Preventing Social Failure
Wayne A. Gordon, PhD Margaret Brown, PhD In the past year, TBI has become more widely known within the general population due to substantial attention in the mass media, starting with Bob Woodruff ’s national TV coverage, where he discussed both his TBI and raised awareness about the large number of brain injuries experienced by soldiers in Iraq and Afghanistan. He continues to appear regularly, keeping TBI “in the news”. Recently, a profile of the research we have done at Mount Sinai School of Medicine in New York City – research on the identification of people with “hidden” TBI and on treatment of executive dysfunction in people with known TBI – has appeared in a Wall Street Journal article1, the third in a series on TBI written by reporter Tom Burton. Given this context of greater public awareness, we believe that this article may be useful for professionals who work in the brain injury field, to increase their awareness of and knowledge about the phenomenon of hidden TBI – how it can be identified and what can be done once it is found. It is our contention that unidentified TBI is a major unrecognized cause of social failure: in educational, vocational and economic arenas. Complex barriers often prevent people with mild TBI from: (a) self-identifying as having a brain injury that is seen as the cause of the disabling symptoms they experience, (b) gaining access to help and (c) addressing long-term, TBI-related problems that affect their quality of life. The story of John and his mother Patricia provides as strong an illustration of these barriers as any we have encountered clini8
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cally over many years. (As we discuss below, consequences at the level of those John experienced happen only to some people who experience a mild TBI.) At age 3, John was hit in the head in the playground by a swing. His mother Patricia called his pediatrician, who felt it unnecessary to take John to the emergency room, as the child wasn’t crying and had no outward signs of injury. His nursery school teacher noticed changes shortly after the playground incident and leaped to an easy conclusion: He must be an abused child. So the recommendation was family counseling. When Patricia explained to her about the playground accident, the teacher dismissed it as “unimportant”. Over the next three years, John had seizures; but no one (including his mother) put this label on the fist clenching and shaking that had appeared out of the blue. When Patricia told the pediatrician of this strange behavior and several other sudden changes she had seen (e.g., highly anxious behavior such as not wanting to go to nursery school, refusing to go to bed at night), the pediatrician explained these new behaviors as “the terrible threes”. Over many years no matter what behavior John evidenced, his doctor and teachers explained it by trying to normalize it: “This is a highly imaginative child who will be the next Steven Spielberg.” When Patricia took John to see a pediatric neurologist, he put John through the usual tests (e.g., “touch your nose”) and declared him “neurologically normal.” On the way out the door, he told Patricia, in effect, “You just have to be a better mother.” Over the next dozen years
many people interacted with John and should have done better by him: another pediatric neurologist, a school study team, a private psychologist and many teachers. Finally, his mother tried to help John by following a different path. She hired a reading tutor, who recognized unusual patterns, including synaesthesia, and recommended a neurological evaluation (another one). With this referral at age 19, John’s brain was finally scanned – the SPECT scan clearly showed a brain injury. If this path had been taken 16 years earlier, much of the horror John and his family faced could have been avoided. With identification of TBI, there would have been an explanation of the “inexplicable” changes and problems John experienced. There would have been options to pursue to address his challenges. In any case, with a clear diagnosis, Patricia pursued and found a brain injury rehabilitation program for her son. But, by that time, he had been so verbally and emotionally abused by others, who for so long had misinterpreted his behavior, that he was overwhelmed by anger and depression. At age 22 he took his own life. His mother still grieves deeply, but asks that their story be told, to help others. John’s journey and his mother’s attempts to get him help over many years clearly illustrate the need for medical professionals, educators and service providers of all types to be aware of hidden, unidentified TBI as a potential explanation of problems reported by clients and students. This raises several questions. How likely is it that a service provider will encounter a person like John? Is hidden TBI rare, or not? What are typical consequences of “mild” brain injuries? How can one determine that a person has had a TBI if he/she has not been hospitalized? And, finally, what can be done to help people with mild TBI who are identified?
How Many Americans Are Living with Unidentified Mild TBI?
First, many people with mild TBI are identified. However, many more people never seek medical help and do not put two and two together to causally link a blow to the head (with changed mental status) to the problems that may follow – sometimes permanently. In trying to estimate the numbers of people with unidentified mild TBI, problems arise when we look to existing data on prevalence, which only document the number of people hospitalized with TBI (across all severities, from the most severe to the so-called mild injuries). A 1998 NIH Consensus Statement on TBI2 estimated that up to 6.5 million individuals who have been hospitalized with TBI live with significant consequences of injury. Of these, many agree that 75-85% are mild injuries. So, the best estimate of people with TBI who are most likely to identify as having a mild TBI is up to 5.5 million. Although this number is large, two aspects give pause, leading to much higher estimates. The first problem, as noted above, is that many people who experience a blow to the head, like John, are not hospitalized nor do they seek any medical treatment at all. Bernstein3 estimates that, for every person with a mild TBI who is hospitalized, three to five others are not. What about these “three to five” others? Should we count all of them? This question suggests the second problem: Many people with mild TBI – both those hospitalized and those who are not – experience problems that are quite short-lived. These are people who go back to their lives and proceed nicely, as if the brain has healed, or any problems they do experience do not interfere with the demands of day-to-day living. Alexander4 estimates that only 15% of people who experience a mild TBI also have persisting problems in functioning. Given this reality, if we want to identify
Paths to Post-TBI Success and Failure within Service Systems
Figure 1
Factors Affecting Decisions At Each Crossroads 1st Crossroad: Person identifies as having a TBI? 1. Medical attention? 2. Socialization as a person with TBI? 3. Causal link between symptoms and TBI?
yes
no
yes
yes
2nd Crossroad: Are services sought? 1. Unmet needs based upon post-TBI sequelae? 2. Adequate knowledge of community resources?
3rd Crossroad: Will TBI be identified? 1. System is aware of the relevance of TBI to its services? 2. Policies are based on adequate information about TBI? 3. Screening for TBI is in place?
4th Crossroad: Are services responsive to need of individuals with TBI? 1. System is aware of TBI and of the need for shifting service paradigms? 2. System policies are informed? 3. Resources are adequate and appropriate?
LIKELY SUCCESS
P E R S O N
no
no
no
S E R V I C E S Y S T E M
LIKELY FAILURE
those with TBI who need help, we are only interested in counting those who do have continuing challenges caused by the injury AND who do not self-identify as having a TBI with disability. Thus, although we are quite sure that the 5.5 million who have a known mild TBI and who experience long-term disability as a result of their injury, we do not know what proportion of people who are amongst the “three to five” experience persisting TBI-related problems. Two studies by our research group found that 8% of college students sampled and who self-identify as non-disabled5 and 7% of a more diverse community sample6 reported having had a blow to the head with loss of consciousness or feeling dazed and confused and persisting complaints. One population-based study is also available that provides a similar estimate. In a 2001 study by Silver et al.7, based on the New Haven Epidemiological Catchment Area data, 8.5% of the population reported having experienced a “head trauma” with loss of consciousness or confusion. These findings imply that a substantial part of the “non-disabled” population has had a mild TBI, experience continuing disability and are unaware that their persisting problems are probably related to a prior brain injury; presumably these are among the “three to five.” If we extrapolate our findings and the results of Silver’s group to the full U.S. population, we see that somewhere in the neighborhood of 21 million people have experienced a mild brain injury and live with substantial conBRAIN INJURY PROFESSIONAL
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the person may not self-identify as a person with a TBI, but may seek services for other reasons; but his/her lack of self-identification remains a handicap within whatever service system he/she may later enter. Consequences of Mild TBI At the second crossroad, the person must decide to seek postIn their study of people in New Haven, Silver and colleagues7 found that, in comparison to individuals with no disability or ER services. To the degree that he/she has knowledge of resourcto those with a physical disability, one-third more of those who es available within the community, the person will be able to experienced TBI (mostly mild and unidentified) reported poor delineate service options and select those that better fit his/her physical health and two-thirds more reported poor emotional needs. In choosing to seek services, the person may choose from health. Further, two-thirds more received welfare or disabil- the private arena (e.g., a local physician) or the public (e.g., the ity payments, and four times as many had attempted suicide. state VR agency); the services may be disability-specific or be geSimilarly, Gordon et al.8 have demonstrated that many cognitive nerically aimed. Again, the person who has not self-identified at symptoms are commonly found in people with mild TBI, indi- the first crossroad, is relatively handicapped in being more likely cating patterns of complaints quite distinct from those of people to seek services that are relatively unrelated to brain injury (e.g., with no disability and with other disabilities. Our research group substance abuse treatment, HIV treatment). The final two crossroads reside within service system venues. also reports that individuals who self-identified as non-disabled, but in fact, reported an altered mental state resulting from a blow At the third crossroad, the system must correctly identify the person with TBI, which will depend to the head, had many symptoms While the exact numbers of people with mild TBI, on its awareness of TBI’s relevance commonly found after known mild TBI, such as headaches, memory unidentified/hidden TBI and moderate-to-severe to its program and on informed problems, high levels of emotional TBI can be debated, we know they are large. We are policy. Program policy should addistress and difficulties with work beginning to see that, particularly in its mild and dress mechanisms for identifying TBI both in people who self-identify and school6. A variety of similar problems have been documented hidden forms, TBI can be a major, but unrecognized, as having had a brain injury as well source of disability leading to social failure. as among those who do not. Thus, by others, e.g., attention problems, some form of systematic screening impaired concentration, depression and memory problems9,10. Binder11 estimates that about 14% of for TBI is crucial at this crossroads. (And, Mount Sinai is develindividuals with mild TBI are unable to work. Thus, mild TBI oping a computerized approach to do just this, the Brain Injury (hidden as well as identified) is typically associated with substan- Screening Questionnaire12 – more about the BISQ below.) Additial physical, emotional and social dysfunction. tionally, the system must communicate results of such screening to those who will use it to shape the services provided. The fourth crossroad refers to the availability of TBI-approPathways to Failure and Success After experiencing a TBI, a person can take a variety of pathways priate services, which are dependent upon the system’s awareness that lead to either success or failure in community life (see Fig- of the sequelae of TBI, of compensatory strategies that are useful ure). In comparison to those with moderate to severe injuries, for people with TBI and of the need to shift the paradigm of those with mild TBI face pathways that are more complex, as treatment to acknowledge the specific cognitive and behavioral decisions regarding an appropriate response to injury are associ- challenges faced by many people with TBI. TBI-appropriate serated with less certainty. For example, for some people with mild vices are dependent, in sum, on informed policies and on adinjuries, post-TBI challenges are relatively brief and self-resolv- equate resources. At this crossroads, the system must take the ing, while others with mild injuries face life-long problems and final step in acknowledging a service recipient’s TBI: not only require intervention from multiple elements within social sys- identification and communication, but also appropriate adaptatems. Furthermore, service systems are less likely to identify the tion of services. Thus, the person’s likely success depends on two important individual’s TBI. Four crossroads are encountered by the person with mild TBI who experiences persisting symptoms along the decisions within his/her own control (i.e., self-identification and seeking services) and a service system that identifies the person as pathway toward success or failure. At the first crossroad, self-identification as a person with TBI having a TBI and provides services responsive to the needs and is the first step to likely success for the person who has experi- impairments of the individual. However, the pathways to failure enced a blow to the head with altered mental status and persist- are many: For example, as was true for John, self-identification ing symptoms. Self-identification will shape the person’s efforts may never happen or be delayed for years, leading the person in seeking services as well as the service system’s response to the with mild-TBI-and-continuing-disability to wander many paths, individual. Self-identification is based on at least two factors. seeking answers to TBI-related problems and running into a vaFirst, those who have received medical attention are more likely riety of dead ends. The data from Gordon et al.6 indicate that to self-identify, in response both to educational measures offered large numbers of people inappropriately fail to self-identify as in hospitals and emergency rooms, and to the socialization pro- having a TBI; they never link causally their substantial probcess of being “defined” by others as a person with a brain injury. lems to the source: the brain injury. Two primary paths to failure We would argue that the more intensive the education effort follow: No help is sought, or services are sought but without associated with medical care, the more likely that self-identifi- informing the helping agency that a brain injury triggered the cation will occur. Second, the person with greater self-awareness presenting complaints. At this point, the agency may further fail will be more likely to recognize the persistence of symptoms and the person by not screening for TBI and, therefore, not identifyto causally link symptoms to the brain injury. At this crossroad, ing the root of the problem; instead, they provide inappropriate sequences – quite an amazing number compared to estimates based just on the hospitalized population.
10 BRAIN INJURY PROFESSIONAL
services. Examples illustrate the diverse paths to failure: It is well recognized that TBI is the leading cause of disability in children. Yet, according to IDEA figures reported by the U.S. Department of Education13, in 1998-99, only 13,000 children were identified in U.S. schools as having had a TBI. In recent years, of the nearly seven million children enrolled in special education under the IDEA, the number identified with TBI “rounded out to zero percent”14. If we were to take these data seriously, we would believe that in 1997 no children with TBI attended schools in Michigan and Delaware and only 21 children in New Jersey and in Ohio15. The parents of the children with TBI who are “missing” from U.S. schools may or may not have identified their children to the school as having had a TBI, but, in any case, these children are on paths to likely failure due to the school’s failure to adopt systematic methods for identifying TBI in its students and then systematically providing them suitable services and accommodations. In a 1999 study by Jenny and colleagues16, about one-third of the brain injuries of abused children examined in an emergency room were not identified in the initial examination. Physicians who were not looking for TBI sent one-third of the children on pathways beset not only by parental but also by system failure. In one of our studies17, 10% of students screened for TBI in “good” New York City schools were found to have a probable TBI (with persisting symptoms) that was previously unidentified. Another form of system failure is misidentification of individuals with TBI: giving them a label that provides special services that are inappropriate to their needs. For example, in an unpublished study, Gordon et al.18 found that one-third of students receiving a special tutoring program for children with learning disability (LD) in reality were children with TBI and were not getting the kind of instruction they needed; their TBI-rooted impairments were misattributed to LD. Frequently in schools, the poor distinctions that are made between TBI, LD and emotional disability lead to failure-tinged pathways for far too many children, whose TBI remains hidden-to-system and mislabeled. In a recent study of ours19, more than 850 people enrolled in substance abuse treatment programs across New York State were screened using the Brain Injury Screening Questionnaire, or BISQ. More than 50% were identified as having experienced one or more TBI’s, with 40% of these reporting a large number of symptoms we have identified as sensitive and specific to mild TBI6. When comparing those with and without a TBI, the data suggest that comorbid TBI is indicative of “hard times”, indeed: those with a history of TBI were more likely to have had more than two prior episodes of substance abuse treatment, a current or past mental illness and past hospitalization for a mental illness. In addition, those with a TBI were more likely to have been a child of an alcoholic and to have used cocaine. In sum, while the exact numbers of people with mild TBI, unidentified/hidden TBI and moderate-to-severe TBI can be debated, we know they are large. We are beginning to see that, particularly in its mild and hidden forms, TBI can be a major, but unrecognized, source of disability leading to social failure. Brain injury professionals can help by becoming more aware of the problem, ensuring “their” agency or organization appropriately screens for TBI and helping develop accommodations for people served who have been identified with brain injuries that carry with them persisting challenges in day-to-day living.
About the Author
Wayne A. Gordon, Ph.D., is the Jack Nash Professor of Rehabilitation Medicine and Associate Director of the Department of Rehabilitation Medicine at the Mount Sinai School of Medicine (MSSM). He joined the faculty of MSSM in 1986 from the Rusk Institute of the New York University Medical Center. He is the Project Director of MSSM’s TBI Model System, the RRTC on TBI Interventions, and the Mount Sinai Injury Control Research Center. Dr. Gordon is a Diplomate in Clinical Neuropsychology and Fellow, American Congress of Rehabilitation Medicine. In 2006, he received a special recognition award from the National Association of Rehabilitation Research Centers; he was president of NARRTC from 2004 to 2006.Currently, he is president-elect of the American Congress of Rehabilitation Medicine, a member of the Board of BIAA, and board member of the Ontario Neurotrauma Foundation. He has published more than 100 articles and book chapters and has presented nationally and internationally on TBI research, stroke rehabilitation, cognitive remediation, and assessment of rehabilitation outcomes. Margaret Brown, Ph.D., is the director of dissemination of the RRTC on Traumatic Brain Injury Interventions, at Mount Sinai School of Medicine in New York, and is an assistant professor in the Department of Preventive and Community Medicine. She is also a consultant on dissemination and on research design. Previously she was program director of the Aaron Diamond Foundation Postdoctoral Research Fellowship Program and research director at the American Paralysis Association. At NYU Medical Center, she was director of training of the RTC on Head Trauma and Stroke and served as project coordinator of the Rehabilitation Indicators project. She has published more than 35 articles and chapters. Dr. Brown received her doctoral degree from NYU, an M.A. from the University of Kansas and a B.A. from the University of California, Berkeley.
References 1.
2.
3. 4. 5. 6. 7.
8.
9. 10.
11. 12.
13.
14.
15. 16. 17.
18. 19.
Burton, T.M. (2008, January 29). Studies cite head injuries as factor in some social ills. Wall Street Journal, pp. 1+. Consensus conference. (1999). Rehabilitation of persons with traumatic brain injury. NIH consensus development panel on rehabilitation of persons with traumatic brain injury. Journal of the American Medical Association, 282, 974-983. Bernstein, D.M. (1999). Recovery from mild head injury. Brain Injury, 13, 151-172. Alexander, M.P. (1995). Mild traumatic brain injury: Pathophysiology, natural history and clinical management. Neurology, 45, 253-260. Gordon WA. (1992). Hidden TBI in college students. Unpublished data. Gordon, W.A., Brown, M., Sliwinski, M., et al. (1998). The enigma of “hidden” traumatic brain injury. Journal of Head Trauma Rehabilitation, 13, 39-56. Silver, J.M., Kramer, R., Greenwald, S., & Weissman, M. (2001). The association between head injuries and psychiatric disorders: Findings from the new haven NIMH epidemiologic catchment area study. Brain Injury, 15, 935-945. Gordon, W.A., Haddad, L., Brown, M., Hibbard, M.R., & Sliwinski, M. (2000). The sensitivity and specificity of self-reported symptoms in individuals with traumatic brain injury. Brain Injury, 14, 21-33. Macciocchi, S.N., Barth, J.T., & Littlefield, L.M. (1998). Outcome after mild head injury. Clinics in Sports Medicine, 17, 27-36. Silver, J.M., Kramer, R., Weissman, M., Greenwald, S. (1998). The association between severe head injuries and psychiatric disorders: Findings from the new haven NIMH epidemiologic catchment area study. Binder, L.M. (1997). A review of mild head trauma. part II: Clinical implications. Journal of Clinical and Experimental Neuropsychology, 19, 432-457. Brain Injury Screening Questionnaire. (1998). New York: Research and Training Center on Community Integration, Mount Sinai School of Medicine (for information: wayne.gordon@mssm.edu). U.S. Department of Education, Office of Special Education Programs. (2000). Twentysecond annual report to Congress on the implementation of the Individuals with Disabilities Education Act. U.S. Department of Education, National Center for Education Statistics. (2006). The condition of education, 2006, NCES 2006-071. Washington, DC: U.S. Government Printing Office. U.S. Department of Education. (1997). To assure the free appropriate public education of all children with disabilities. Nineteenth annual report to Congress. Jenny, C., Hymel, K.P., Ritzen, A., Reinert, S.E., & Hay, T.C. (1999). Analysis of missed cases of abusive head trauma. Journal of the American Medical Association, 281, 621-626. Cantor, J.B., Gordon, W.A., Schwartz, M.E., Charatz, H.J., Ashman, T.A., & Abramowitz, S. (2004). Child and parent responses to a brain injury screening questionnaire. Archives of Physical Medicine and Rehabilitation, 85, S54-S60. Gordon, W.A., Hibbard, M.R., & Martin, T. (1996). Unidentified TBI in children with learning disabilities. Unpublished data. Gordon, W., Fenske, C., Perez, K., & Brandau, S. (2004, Jan. 7). Co-morbidity between TBI and substance abuse. Strengthening Systems: Investing for Results. Alcoholism and Substance Abuse Providers of New York State 7th Annual Statewide Conference. New York, NY. BRAIN INJURY PROFESSIONAL
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Differences Among Young and Old Nursing Home Residents with TBI
Sarita L. Karon, PhD and Jo-Anne C. Lazarus, PhD
Acknowledgments The authors thank Lauralynn Holman of the Center for Health Systems Research and Analysis, University of Wisconsin-Madison for her assistance in analyzing the data; Dr Jean Langlois and Ms Marlena Wald of the Centers for Disease Control and Prevention for their contributions to this work; and the Centers for Medicare and Medicaid Services for providing access to the data. Disclaimer: The views expressed in this article are those of the authors and do not necessarily represent those of the Centers for Disease Control and Prevention, or of the Centers for Medicare and Medicaid Services. Background Young people are among those at greatest risk of experiencing a TBI, either as a result of an accident or, particularly these days, as a result of a service-related injury (National Center for Injury Prevention and Control, 2007). An estimated 20% to 30% of people hospitalized with a moderate to severe TBI are discharged to nursing homes (Federal Register, 2003). Although nursing homes are most often a place of residence and care for older adults (age 65 or greater), residents with TBI tend to be younger. Almost 90% of nursing home residents without TBI are age 65 or older whereas only 50% of nursing home residents with TBI are in that age group (Figure 1). Understanding how the needs and experiences of nursing home residents with TBI vary by age is necessary to ensure that they receive the best care possible in the most appropriate setting. Data and methods The data presented in this paper come from the Minimum Data Set (MDS), a comprehensive assessment of virtually all nursing 12 BRAIN INJURY PROFESSIONAL
home residents in the United States (Centers for Medicare and Medicaid Services, 2007). The assessment is done at admission to nursing homes and periodically after that to aid in care planning. The data used here represent all individuals who had one or more assessments done in the third quarter of calendar year 2005. When more than one assessment was found for an individual, only the last assessment was used. Data were accessed under the terms of a Data Use Agreement with the Centers for Medicare and Medicaid Services. Research was performed with oversight from an Institutional Review Board at the University of Wisconsin – Madison. More information about the data used here and the approach to identifying people with TBI can be found in Karon et al. (2007). For comparative purposes, nursing home residents with a TBI are divided into four age groups: children (ages 0 – 21); young adults (22 – 44 years); middle-aged adults (45 – 64 years); and older adults (65 years and older). The sample includes 26,485 individuals with TBI residing in the nation’s nursing homes during this time period. These people represent about 2% of the total nursing home population.
Demographics Unlike nursing home residents without a TBI, those with a TBI tend to be younger (average age less than 65) and, except for older adults, are predominantly male. Younger people with TBI are more racially and ethnically diverse than their older peers (Figure 2). Fewer than half of all children with TBI living in nursing homes are white, compared to 83% of older residents with TBI. With life experiences that differ by age, sex, and racial/ethnic background, nursing home residents with TBI may have difficulty finding a peer group among their fellow residents. Activ-
Age Distribution of Nursing Home Residents Without TBI
Figure 1A 0.2%
1.8%
Racial/Ethnic Distribution of Nursing Home Residents with TBI by Age
Figure 2 100%
90%
9.9%
80% 70%
88.2%
60%
<= 21 yrs
22-44 yrs
45-64 yrs
65+ yrs
50% 40%
Age Distribution of Nursing Home Residents with TBII
Figure 1B
30% 20%
1.3%
10%
17.7%
0% Children
49.7%
31.3%
Young Adult
American Indian/Alaskan Native
Middle-Aged Adult
Asian/Pacific Islander
22-44 yrs
45-64 yrs
65+ yrs
ity planning may be targeted to life experiences and interests that are different from their own, resulting in social isolation.
White
60.0%
50.0% Percent with co-morbid condition
Co-occurring conditions and diagnoses Most nursing home residents have at least one condition or diagnosis in addition to the TBI, regardless of age. The number of co-occurring conditions increases with age from 1.5 for children to 3.2 for older adults. The types of conditions that are most common vary by age (Figure 3). Among the three youngest groups, seizure disorders were the most common co-morbidity; mental retardation, mental illness, or developmental disability and aphasia also were relatively common. These conditions were less common among older adults. It is likely that some of these conditions result from the TBI; however, it is not possible to determine from this data if any of these conditions actually caused the TBI or were pre-existing conditions. The percentages of people with co-morbid depression and with co-morbid hypertension increase with increasing age. Hypertension is known to be age related (Burt et al., 1995), and this finding holds among people with TBI. It is not clear why depression should increase with age, especially as other studies of community-based populations have found the reverse (Narrow et al., 2002; Kessler et al., 2005). The difference may accurately reflect clinical differences, or it may be that the tools used to identify depression among nursing home residents are not appropriate for use with younger populations. Significant efforts have been made to increase the identification and treatment of depression among nursing home residents in general (Masspro, n.d.). Tools used to identify depression among nursing home residents have been developed for use with a popula-
Hispanic
Common Co-morbidities by Age Group
Figure 3 <= 21 yrs
Black
Older Adult
40.0%
30.0%
20.0%
10.0%
0.0% Children Seizure disorder Depression Cancer
Young Adults
History of MR, MI, or DD
Anemia
Quadriplegia
Hemiplegia/hemiparesis
Diabetes
Middle-Aged Adults Aphasia Stroke
Older Adults
Cerebral palsy Dementia
Hypertension
Emphysema/COPD
Renal Failure
tion that tends to be older. Nursing home staff should be made aware of available tools for identifying depression in different age groups. Other conditions that are seen at relatively high rates in the two older age groups include emphysema (10%-16%); dementia (Alzheimerâ&#x20AC;&#x2122;s and non-Alzheimerâ&#x20AC;&#x2122;s; 9-18%); stroke (15%25%); and diabetes (19-27%). Anemia, cancer, and renal failure also were found more commonly among older adults than BRAIN INJURY PROFESSIONAL
13
any of the younger age groups. These findings suggest that older individuals with TBI are receiving care in the nursing home for multiple conditions, some of which may be unstable and require intensive medical management. The most common comorbid conditions among children and young adults tend to be stable; these conditions may restrict physical functioning, but do not necessarily require intensive medical management.
Psychosocial well-being Children are the least likely to be at ease interacting with others (46%), doing planned or structured activities (29%), or doing self-initiated activities (16%). People with TBI become more at ease interacting with others as they increase in age, with 76% of older adults said to be at ease in this regard. The differences among adults of different ages with TBI at ease in interacting with others, taking part in activities, or doing self-initiated activities are small. The difference between children and adults of all ages could reflect natural differences in development; disability-related limitations, especially those related to communication limitations; or the lack of a peer group for children residing in nursing homes. Functional status Cognitive function is generally low in nursing home residents with a TBI in all age groups. This is especially true among children, where 74% were reported to be severely impaired in the cognitive skills needed for daily decision-making. The same was true for 36% of young adults, and for 23% of middleaged and older adults. Significant shares of people at all ages experienced problems with both short- and long-term memory, with children being more likely than adults of all ages to have these types of problems. Over 80% of children had memory problems (88% short-term and 84% with long-term memory). Among adults, the similar proportions ranged from 77% to 85% having problems with short-term memory, and 64 – 67% having problems with long-term memory. These serious cognitive deficits make it hard for people to function independently and safely. A return to community would require extensive support, often around the clock. For people with this level of needed support, alternative residences might be group homes, community-based residential facilities, or adult family homes. These types of supports often are preferred by individuals as less restrictive and more home-like; however, access to them may be limited by supply and available funding. The most common behavioral concern was inappropriate or disruptive behavior, observed most often among young and middle-aged adults (about 26%), and least commonly among children and older adults (10% and 14%, respectively). Adults of all ages were more likely than children to be resistant to care (about 21% vs. 10%, respectively). Behavioral issues can make it hard to think about providing support to a person outside of a nursing home. However, in studies of people with intellectual disabilities, behavior problems often have been found to reduce in frequency or severity when people are supported in community-based environments (Kim et al., 2001), suggesting that behavioral concerns on their own should not negate the possibility of discharge to the community. Children were the most dependent in terms of physical function. Regardless of the physical activity (e.g., bathing, dressing, eating, ambulation, toileting), children were the most likely to 14 BRAIN INJURY PROFESSIONAL
be totally dependent on others, requiring one or two other people to provide physical assistance. There was little difference across age groups in the percent of people who use a wheelchair as their primary mode of locomotion (63 – 69%), but children were the least likely to wheel themselves (13% vs. 30-42% for adults). It is not known whether this difference reflects lack of access to equipment that can be used independently, or whether it stems from differences in the cognitive and physical abilities to operate the equipment independently. It may be that providing more appropriate equipment could increase independence among children (as well as among adults).
Special treatments and therapies Large numbers of children with TBI were receiving treatments to support breathing. Over one-quarter were receiving oxygen therapy; 39% were receiving suctioning, 37% had a tracheostomy, and 9% were on a ventilator or respirator. These types of respiratory treatments were less common for people with TBI at older ages. A vast majority of children with TBI (80%) were receiving nutrition through a feeding tube. The same was true for 44% of young adults and only 10% of elders. Children also were more likely than adults of all ages to be receiving speech therapy (30% of children), occupational therapy (38%), physical therapy (27%), and respiratory therapy (30%). Although adults were less likely than children to be receiving these therapies, when they did receive therapy they tended to receive more (measured in minutes per week) than did children. Communication abilities Among residents with TBI, children and younger adults are particularly subject to communication barriers. About 11% of children are highly impaired in hearing. Nearly three of every five (57%) rarely or never understand others, and 68% of them are rarely or never understood by others. Only 29% of children with TBI communicate through speech. Communication problems are less frequent with increasing age. Only 18% of young adults, 10% of middle-aged adults, and 9% of older adults are rarely or never able to understand others. Where over two-thirds of children are rarely or never understood by others, the same is true for 27% of young adults, 15% of middle-aged adults, and 11% of older adults. The ability to communicate – both to make oneself understood and to understand others – has a profound impact on one’s quality of life and health. Communication challenges can prevent one from making preferences known or exercising choices, and can contribute to social isolation. While there are many ways to communicate with people who have various types of communication barriers – sign language, letter boards, picture books, idiosyncratic body language – these forms of communication can take more time than speech. In a nursing home with limited staffing or with high rates of turnover among staff, workers may have neither the time nor familiarity with individuals needed to communicate effectively. Discharge likelihood There is extensive literature suggesting that individuals generally prefer community-based residence (e.g., private home, group home, assisted living) to nursing homes (Reinhard and Fahey, 2003; Kane et al., 2006). Further, support in the community
is, on average, less costly than care in a nursing home (Braddock et al., 2005; APS Healthcare, 2005; Weissert et al., 1997). The cost obviously varies with the individual’s needs and, as seen throughout this article, many people with TBI who are living in nursing homes have quite extensive needs. Factors that affect the likelihood of discharge to the community include the potential for rehabilitation, the stability of medical conditions, and attitudes and preferences of the individual and of their primary support people. Regardless of age, about 12-15% of individuals believed they were capable of increased independence, and 14-20% of direct care staff believed the individuals could achieve increased independence. The individual’s desire to return to the community did not differ by age (19-22%), but there was a sizeable difference in the preference of their primary (non-paid) support person’s preference. In about two of every five cases (38%), the support person for children would prefer they return to the community. The same was true for 19% of young adults, and only 12-13% of the support persons for middle-aged and older adults. This may reflect the differences in age and abilities of the support people. Support people for children are likely to be parents, whereas the support people for middle-aged and older adults are likely to be either parents or spouses, who themselves are aging and may have health concerns. Children are more likely to be medically stable. Only onequarter of children were reported to have unstable conditions, whereas 44% of older adults had unstable conditions that could make it difficult to move to a community-based setting. Despite the challenges, 80% or more of people admitted to a nursing home with a TBI were discharged within the first year. This percentage was greatest among children (88%) and older adults (87%). The average time to discharge was under three months, regardless of age. Although older adults were the most likely to be discharged within a year, they also were the most likely to have that discharge result from death (11% vs. 3% for all other age groups). The percent of discharges to a private home, with or without in-home health care, was similar across age groups (31 – 40%). Discharge to other community-based settings (e.g., board and care homes, assisted living facilities) was greatest among older adults (9%) and least among children (1%). The oldest group was the least likely to be discharged to another institution (e.g., acute care hospital, psychiatric facility, other nursing home, rehabilitation hospital), while the three younger groups were equally likely (55 – 57%) to be discharged to other institutions. Children were the most likely to be discharged to a rehabilitation hospital.
Discussion The needs of nursing home residents with TBI are different from those of residents without TBI, and the needs of people with TBI differ greatly by age. Children with TBI who are living in nursing homes tend to have severe disabilities that require extensive support. However, their conditions are stable and there is a strong preference for community-based living and supports. Young and middle-aged adults are less disabled, and also prefer community-based services. Older adults are the least medically stable, with complex medical conditions requiring intensive intervention. They are the least likely to have support people who prefer them to be served in the community. Understanding these differences in needs and preferences is important
to assuring that people are served in ways that best meet their needs and desires. The growing number of initiatives to help transition people from nursing homes to community-based settings can benefit by targeting their services and activities to meet the distinct needs of each group. About the Authors
Sarita (Sara) Karon, PhD, is an Associate Scientist at the Center for Health Systems Research and Analysis at the University of Wisconsin – Madison. Dr. Karon has extensive background and experience in the measurement of quality of long-term care, both in the community and in institutions. Her work includes development and validation of quality measures, including risk adjustment and benchmarking, and also the practical application of data for quality assurance and improvement, and program evaluation. Dr. Karon was one of the developers of the nursing home Quality Indicators now used across the country. She has conducted numerous studies of issues of quality and access in nursing homes, including her recent study of the prevalence and outcomes of TBI among nursing home residents, which was funded by the CDC. Jo-Anne C. Lazarus, PhD, is a professor in the Department of Kinesiology at the University of Wisconsin-Madison. Prior to her faculty position in Kinesiology she did post-doctoral work in the Department of Rehabilitation Medicine at UW-Madison, studying the recovery of brain function following traumatic brain injury. Her current research involves understanding how various interventions allow the brain to reorganize to allow for recovery of motor function in various neurological disorders such as TBI and Parkinson disease. She received her PhD in Motor Control and Development from the University of Michigan.
References APS Healthcare, Inc. Family Care Independent Assessment: An evaluation of access, quality and cost effectiveness for calendar year 2003-2004. Report to the Wisconsin Department of Health and Family Services, 2005. Downloaded November 28, 2007 from http://dhfs.wisconsin.gov/ LTCare/pdf/FCIndepAssmt2005.pdf Braddock D, Hemp R, Rizzolo MC, et al.. The State of the States in Developmental Disabilities 2005. Coleman Institute for Cognitive Disabilities, University of Colorado, 2005. Burt VL, Whelton P, Roccella EJ, et al. Prevalence of Hypertension in the US Adult Population: Results from the Third National Health and Nutrition Examination Survey, 1988-1991. Hypertension, 25:305-313, 1995. Centers for Medicare and Medicaid Services. Revised Long Term Care Facility Resident Assessment Instrument User’s Manual Version 2.0. Revised March 2007 Federal Register: 68(237): 68926-68931, December 10, 2003. Kane R, Kane R, Kitchener M, et al. State Long-Term Care Systems: Organizing for rebalancing. Report to the Division of Advocacy and Special Programs, Centers for Medicare and Medicaid Services. December 2006. Karon SL, Lazarus J, and Holman L. Challenges and Approaches to the Identification of Traumatic Brain Injury Among Nursing Home Residents. Journal of Head Trauma Rehabilitation, 22(6):350-359, November/December 2007. Kessler RC, Bergland P, Demler O, et al. Lifetime Prevalence and Age-of-Onset Distributions of DSM-IV Disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62:593-602, 2005. Kim S, Larson SA, Lakin KC. Behavioral outcomes of deinstitutionalization for people with intellectual disability: A review of US stides conducted between 1980 and 1999. Journal of intellectual and developmental disability, 26:1): 35-15, March 2001. Masspro. A Systems Approach to Quality Improvement in Long-Term Care: Depression screening and treatment. Downloaded on March 16, 2008 from https://wcrc.chsra.wisc.edu/wcrc/ content/Depression/Resources/MedQIC%20A%20Systems%20Approach%20to%20QI%20 in%20LTC.pdf Narrow WE, Rae DS, Robins LN, et al. Revised Prevalence Estimates of Mental Disorders in the United States: Using a clinical significance criterion to reconcile 2 surveys’ estimates. Archives of General Psychiatry, 59:115-123, 2002. National Center for Injury Prevention and Control, Centers for Disease Control and Prevention. Traumatic Brain Injury Facts. September 21, 2007. Downloaded March 5, 2008 from http:// www.cdc.gov/ncipc/factsheets/tbi.htm?s_cid=nchmTV_ERSe14_003 Reinhard S and Fahey CJ. Rebalancing Long-Term Care in New Jersey: From Institutional toward Home and Community. New York: Milbank Memorial Fund. 2003. Weissert WG, Lesnick T, Musliner M, et al. Cost Savings from Home and Community-Based Services: Arizona’s capitated Medicaid long-term care program. Journal of Health Politics, Policy, and Law, 22(6): 1329-57, December 1997. BRAIN INJURY PROFESSIONAL
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17
Traumatic Brain Injury among ‘Citizen Soldiers’
By John Driscoll Vice President, National Coalition for Homeless Veterans By the summer of 2008, an estimated 1.8 million men and wom- tegrated national outreach and assessment program made compreen serving in the U.S. military will have been deployed to par- hensive study of this veteran population a challenging prospect. ticipate in combat and support operations in Operations Iraqi Providing an appropriate level of post-deployment counselFreedom and Operation Enduring Freedom (Afghanistan). This ing, health care, transition assistance to ensure smooth reintegrais the largest mobilization of American armed forces for service tion into civilian society, and other supportive services for this on foreign soil since the close of the Vietnam War in 1975. evolving veteran population has presented significant challenges The demographic profile of for the Departments of Defense, Vetground forces serving in OIF/OEF is State, municipal and local health care delivery erans Affairs (VA) and Labor, as well unlike any other in modern U.S. milas the U.S. Congress and the Execuitary history. According to Depart- systems are positioned to help the Department of tive Branch. It would be fair to say ment of Defense (DoD) information, Defense and Department of Veterans Affairs iden- researchers, policy makers, care proapproximately 45 percent of person- tify and provide proper treatment and follow-up viders and community leaders are nel in the theater are Reservists and support for the largest group of wounded veterans all struggling to adapt to the service members of the National Guard. needs presented by this new generasince the Vietnam War. These men and women are not tion of combat veterans. members of the regular armed forces. Last year Congress passed legislaThey are called into active service, trained, deployed for combat tion extending Guard and Reserve members’ access to Departand support operations, and then deactivated to resume their ment of Veterans Affairs (VA) health care for service in a combat civilian lives. This period of activation may last for two years or zone from two to five years. That campaign lasted nearly four longer for troops deployed to OIF/OEF. More than 40 percent years. Adoption of the law represents an historic benchmark in of National Guard personnel who have served in Iraq and Af- both U.S. military and medical history. The nation’s state and ghanistan have been deployed more than once. More than 14% community health systems now have an important role in providof them are women, many with dependent children. ing optimum post-deployment support for the wounded veterans This article focuses on these “citizen soldiers” because they of these wars. are the veterans who are most likely to seek primary care in priIncidence of Traumatic Brain Injury vate and community health systems after deactivation. The mental, physical and economic impacts of deployments Advances in medical technology, trauma management and baton the men and women who are called to serve in Iraq and Af- tlefield evacuation systems are saving lives. The most marked ghanistan are being studied, but are still largely unknown. Though survival rate increases among the seriously wounded include these troops represent a unified force in the field, once they return victims of multiple traumatic amputations, severe burns, spinal to their communities they are subject to authorities and policies cord injuries and head injuries. However, the signature wound of Operations Iraqi and Enthat vary from state to state. Until very recently, the lack of an in18 BRAIN INJURY PROFESSIONAL
Important VA Contacts Department of Veterans Affairs (www.va.gov) • VA Medical Facilities Locater: 1-877-222-8387 • Medical Centers • Community-based Outpatient Clinics • Veteran Reintegration (VET) Centers • VA Facilities On-line Locator: www.va.gov/directory/guide/home.asp • Regional VA Benefits Offices Locater: 1-800-827-1000
during Freedom is traumatic brain injury (TBI). The Defense and Veterans Brain Injury Center reports that up to 64% of troops evacuated from the battlefields of Iraq have suffered some degree of TBI, ranging from more obvious and severe head trauma to mild TBI which, officials say, may go unnoticed or unreported because of the severity of other wounds. The main cause of these injuries is proximity to the blast of improvised explosive devices (IEDs), including roadside bombs, booby traps, mortar rounds, hand-held rocket launchers and crude mines. According to a report in the May 19, 2005, New England Journal of Medicine, the Office of the Surgeon General of the Army estimated that 12% to 14% of all combat casualties in the Vietnam War had a brain injury. However, because the mortality rate of those with serious head and chest wounds was nearly 75% or greater, only a small percentage of those casualties were treated in evacuation hospitals. What is not known is how many troops who do not receive medical treatment and are not evacuated from units in Iraq and Afghanistan have sustained mild to moderate brain injuries. Military medical officials have estimated as many as 18% of all personnel deployed may have been impacted at some level. Even without validated incidence reporting, the exposure rate is considered high enough that both DoD and VA have implemented system-wide screening and intervention protocols for all OIF/ OEF veterans, in early 2007. Both the military and veterans health care systems define mild TBI as “concussion” injuries, characterized by a brief loss of consciousness or altered mental status caused by a head injury, either from sudden and forceful impact with another object or proximity to an IED explosion. A host of other symptoms, such as lingering or recurrent headaches, vision or hearing impairment, dizziness, irritability and mood swings are not readily identified, particularly in combat operations, and some may not be evident immediately following the injury. In fact, many of those symptoms do not appear until later, and may be misdiagnosed as symptoms of other conditions. Further complicating assessment of TBI on the battlefield is that most of the personnel in the “blast zone” do not lose consciousness or exhibit impaired mental status, yet are exposed to the same blast force -- or violent jarring -- as those who do. Since most of the Reservists and Guard personnel in the theater are career-oriented, even those who suspect they may have incurred a mild to moderate injury may be reluctant to report their concerns. Of greater concern to providers, is the lack of knowledge about the impact of repeated exposures to explosive blasts. As previously mentioned, more than 40 percent of these men and women have been deployed more than once for combat and support operations, and many have been subjected to multiple exposures during their tours of duty.
Link to Mental and Behavioral Issues
A 2006 study conducted by the Division of Psychiatry and Neuroscience, Walter Reed Army Institute of Research, and the Deployment Health Clinical Center and Uniformed Services University of Health Sciences, Washington, D.C., provides critical insight into the possible impacts of mild TBI on veterans following a one-year deployment to Iraq. The findings were reported in the New England Journal of Medicine, January 31, 2008. Two Army units -- one regular Army and one National Guard -- were included in the study. The participants were asked to complete questionnaires three to four months after their return from duty in Iraq. As reported in the New England Journal of Medicine, troops that were identified as having mild TBI were “significantly more likely” to report poor health, missed time at work, more postconcussive symptoms and more frequent doctor’s visits than those who suffered other injuries. However, after adjusting for those who tested positive for post-traumatic stress disorder (PTSD) and depression, none of those conditions or symptoms persisted other than headache as a direct consequence of TBI. The report concluded: “Mild traumatic brain injury is strongly associated with PTSD and physical health problems 3 to 4 months after the soldiers returned home. PTSD and depression are important mediators of the relationship between mild traumatic brain injury and physical health problems.” Other significant findings in the study: 4.9 percent of soldiers reported injuries with loss of consciousness • 10.3 percent of soldiers reported injuries with altered mental status • 15.2 percent met criteria for diagnosis of TBI • 17.2 percent reported other injuries • 43.9 percent of those who lost consciousness met criteria for PTSD • 27.3 percent of those with altered mental status met criteria for PTSD • 9.1 percent of those with no injury met criteria for PTSD The impact of repeated exposures to blast-related mild TBI episodes, which generally have no long-term symptoms, is still unknown. Nor can they be certain that neurological impacts of mild TBI cases are no more serious or long-lasting than physical post-concussion symptoms. The proven association between mild TBI and PTSD and emotional issues, however, is extremely important. In 2004 the VA published the “Iraq War Clinician Guide,” which cited research that found up to 30% of combat veterans are likely “to experience some clinical degree of depression, post-traumatic stress disorder, or other emotional distress.” The relatively high presumptive incidence of mild to moderate TBI among veterans returning from Iraq and Afghanistan will, in all probability, add to the health, social and economic burdens many of these men and women encounter once they are discharged. Anxieties about strained family ties, haunts they cannot or do not want to share with loved ones, economic stresses from disruptions in their careers or employment, concerns about their health – these issues are trip wires on the path to reintegration back into the civilian world. Without the proper guidance and support, many of these men and women will find themselves at a higher risk of home•
BRAIN INJURY PROFESSIONAL
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Veterans and Families Who Need Help Every VA medical center and most VA Regional Offices have a homeless veteran service coordinator to help homeless veterans and provide referrals to services in the community. Go to www.va.gov and click on VHA Facilities Locator for the medical center serving your area; call 1-877-222-8387; or look in the blue pages of your phone book under U.S. Government, Department of Veterans Affairs. To locate the nearest VA Regional Benefits Office, call 1-800-827-1000. Vet Centers – VA Readjustment Counseling Centers serve combat veterans who need help reintegrating into their communities after discharge. Referrals include access to medical, housing, employment and other services. To find the nearest Vet Center, call 1-877-222-8387. Veterans separating from active duty after deployment to Iraq and Afghanistan are entitled to two years of free medical care through the VA for conditions related to their service. This is a critical opportunity to also receive benefits counseling. Contact your nearest VA medical center to schedule an appointment. www.nchv.org – The National Coalition for Homeless Veterans website offers a wealth of resources for veterans and their families: Are You a Homeless Veteran?” is a step-by-step guide on how to find emergency assistance, transitional housing programs, obtain personnel records, and access VA medical services. The “Employment” section steers visitors to a wide range of employment services and job listings. “Homeless Veteran Service Providers” is a national directory of veteran assistance programs and agencies. www.hud.gov – Click on “Homeless” under “Homes and Communities” for a comprehensive list of organizations that offer assistance to homeless and low-income individuals and families in thousands of communities nationwide.
lessness than their non-veteran contemporaries. In 2005, the VA Northeast Program Evaluation Center (NEPEC) reported that male veterans are 1.3 times more likely than non-veteran males to become homeless; and female veterans are 3.6 times more likely than non-veteran females. NEPEC reported it did not find conclusive evidence of a link between an increased risk of homelessness among veterans and the stresses of military service, whether veterans served in combat or peacetime operations. However, service providers who perform intensive assessment interviews with homeless clients who request admission into their programs tell a different story. Aside from the causes shared by all homeless people – health issues, economic hardships, and lack of affordable housing – veterans do present additional burdens. Most are separated from family and social support networks for extended periods of time for training and deployment, periods of potentially extreme stress and personal conflict. Many serve valiantly in combat, but return home with skills that are not readily transferred into the civilian work force. Some are impacted by coping strains they have not yet begun to work through – mild to severe depression, anxiety and guilt, heightened nervous and startle reflexes, and stress-related insomnia. Many women experience sexual harassment and assault during their active military service, according to officials from the Department of Defense and Veterans Affairs. Women who have dependent children, which is not uncommon among “citizen soldiers,” and persistent 20 BRAIN INJURY PROFESSIONAL
gender bias in some communities and industry hiring practices likely add to their higher risk of homelessness. Service providers are concerned that the infusion of new data showing a correlation between mild traumatic brain injury and PTSD and emotional distress may adversely impact those ratios. A report published in The Journal of the American Medical Association in November 2007 further adds to these concerns. The article focused on the results of a study conducted by the Department of Defense that focused on mental health assessments of more than 88,000 combat veterans returning from Iraq. Assessments were performed immediately upon their return and at three to six months later. According to the report: “Soldiers reported more mental health concerns and were referred at significantly higher rates from the [second assessment] than from the [first]. Based on combined screening, clinicians identified 20.3 percent of active and 42.4 percent of Reserve component soldiers as requiring mental health treatment... Rescreening soldiers several months after their return from Iraq identified a large cohort missed on initial screening. The large clinical burden recently reported among veterans presenting to Veterans Affairs facilities seems to exist within months of returning home, highlighting the need to enhance military mental health care during this period.” Role of Private, Public Health Care Providers
The results of the TBI study and DoD “Assessment of Mental Health Problems” herald the potential for considerable impacts on public and private health systems nationwide by “citizen soldiers” who have returned from service in Iraq and Afghanistan. Though these men and women are now entitled to VA medical care for service-connected illnesses and injuries for up to five years after deactivation, many may not know about TBI screening and available treatment. Many may not realize they should request those services. Most of them left active military service before the health benefit extension law was passed. Others may be in areas underserved by VA facilities, or receive primary health care at private or community health care facilities. The VA’s system-wide TBI screening and referral protocols have been in place for 14 months; combat veterans have been coming home for more than four years. The number of men and women from the National Guard deployed since 2003 alone suggests hundreds of thousands of these deactivated Reservists and National Guard veterans of the Iraq and Afghanistan wars are likely to seek medical care at non-VA facilities. Those who were injured while on duty, particularly if the injury involved exposure to explosive blasts or any sudden impact by an object with the head or neck, should be referred to the nearest VA Medical Center or VA community-based outpatient clinic (CBOC). Medical professionals in primary care offices and facilities, emergency rooms, specialty clinics, counseling centers and substance abuse treatment programs should familiarize themselves with the VA TBI screening and treatment protocols (see GAO Report GAO-08-276, February 2008), and determine where they should refer veterans for these services in their community. Involvement by private and community health systems in partnership with the VA Healthcare System will help ensure that all combat veterans receive the care they need, maximize the benefits of TBI research, and enhance the development of effective medical interventions and follow-up support.
How You Can Help There are many opportunities to improve the services available to help homeless veterans in your community, either as an individual or as a member of a group or organization. Focus your efforts on supporting the homeless veteran service providers or homeless assistance agencies in your area. For a list of agencies in each state, go to www.nchv.org, and click on “Homeless Veteran Service Providers.” • Support Veteran Service Providers – Donate personal care items, clothing (new underwear, socks and T-shirts are always needed) and food, or make cash contributions. • Serve as mentors, counselors or legal aides – Homeless veterans in transitional or supportive housing often need help with learning basic life and social skills, employment training and placement, mental health or substance abuse counseling, and help with legal problems. • Raise funds for programs – Churches, civic and business groups, professional organizations, and veteran service organizations (American Legion, VFW, AMVETS, Disabled American Veterans, Vietnam Veterans of America) often provide critical support to local programs through community and charitable events. Involve the local media to ensure benefactors are recognized for their support of veterans in crisis. • Participate in Stand Down programs – These one- to threeday events give homeless veterans a secure, community-like retreat to receive healthcare and personal hygiene services, food, clothing, housing, employment referrals, and VA benefits counseling – all in one location. A list of upcoming Stand Downs and event coordinators is available at www.nchv.org. • Medical professionals may volunteer at local community health clinics in areas not well served by VA medical facilities. Develop an outreach program to inform local veterans how to access the services they need. • Become involved with your community’s public assistance planning groups. Federal and state funding for homeless programs depends on citizen participation in public meetings and hearings.
LiveOakLiving.com
About the Author
John Driscoll is Vice President, Operations and Programs, for the National Coalition for Homeless Veterans (NCHV), which is one of the nation’s foremost authorities on homeless veterans’ issues, programs in place to help homeless veterans, legislation, federal funding streams, national policy issues, inter-agency coordination of services, and organizations providing direct services to homeless veterans.
Resources
“VA Health Care – Mild Traumatic Brain Injury Screening and Evaluation Implemented for OEF/ OIF Veterans, but Challenges Remain” – Government Accountability Office (GAO), GAO-08276, February 2008. “Mild Traumatic Brain Injury in U.S. Soldiers Returning from Iraq” -- The New England Journal of Medicine, January 31, 2008. “Longitudinal Assessment of Mental Health Problems Among Active and Reserve Component soldiers Returning from the Iraq War” – Journal of the American Medical Association, November 14, 2007. “Traumatic Brain Injury: Hope Through Research” – National Institute of Neurological Disorders and Stroke, Bethesda, Maryland, December 11, 2007. “Common Reactions After Trauma” – National Center for Post Traumatic Stress Disorder, U.S. Department of Veterans Affairs, May 22, 2007. (www.ncptsd.va.gov) “Defense & Veterans Brain Injury Center: A Congressional Program for Service Members and Veterans with Traumatic Brain Injury and Their Families” – Walter Reed Army Medical Center, Washington, D.C. (www.DVBIC.org)
LifeLong Living Programs for Adults with Cognitive Disabilities David Seaton, Owner/CEO • ds@tc-tx.com • 512.371.1078 P.O. Box 1410 • Manchaca, Texas 78652
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Traumatic Brain Injury as a Source of Financial Strain and Bankruptcy: What’s the evidence?
William Hollingworth PhD, Jeffrey G Jarvik MD, MPH
Acknowledgements The authors thank Chief Judge Karen Overstreet, JD and her colleagues at the US Bankruptcy Court, Western District of Washington, Seattle, Washington and Annemarie Relyea-Chew, JD, MS, University of Washington for their help in data collection and their contribution to the original research on injury and bankruptcy. Introduction The costs of treatment and rehabilitation for patients with traumatic brain injury (TBI) are staggering. In the year 2000, the costs and productivity losses attributable to TBI in the US totalled $60 billion (Finkelstein, Corso, & Miller 2006). While some of the burden is shared by the tax payer (through programs such as Medicare and Social Security Disability Insurance (SSDI)), employers and all privately insured individuals (through insurance premiums), a substantial proportion falls upon the patient and their family. Research has detailed the impact of TBI on the mortality (Flaada et al. 2007) and morbidity (Thurman et al. 1999). But, the financial impact of TBI on individual households remains a hidden issue. Newspaper headlines, such as “Injury decimates finances of soldier’s parents”(Associated Press 2007), remind us that, for some families, financial rehabilitation following TBI is just as fraught as physical and psychological recovery. But it is difficult to establish a comprehensive picture of household financial problems. Difficulties can occur immediately as families struggle to pay medical bills, in the medium-term as lost income impairs the ability to service debt, and into the long-term if cognitive problems from the injury affect financial management. This protracted time line means that any one clinician is unlikely to be aware of all the financial problems faced by families post-injury. Although a hidden issue, financial problems after TBI often 24 BRAIN INJURY PROFESSIONAL
play a key role in a negative spiral of events. Injury depletes income and wealth, which presents additional obstacles to accessing needed health care, further reducing health and wealth. More effective management of economic problems post-injury should improve more than just the financial health of patients. Our interest in financial outcomes following TBI arose when we had the opportunity to link a hospital trauma registry with the district bankruptcy records (Hollingworth et al. 2007). Bankruptcy represents just the tip of the iceberg of financial problems following injury. Many injured patients struggle to repay medical debts or maintain income without filing for bankruptcy. As our research progressed it became apparent that bankruptcy following TBI was relatively common. Furthermore, there was clearly no one single pathway between TBI and bankruptcy. Some patients did have large medical debts evident on the bankruptcy petition that swamped their ability to repay. But the remainder, in fact the majority, did not have massive medical debts. Of course, some individuals would have gone bankrupt even if they had not had the TBI. However, in a few of the remaining cases it seemed that other factors, such as injury-related loss of income or legal costs, instigated the bankruptcy. These observations prompted us, in ongoing research, to investigate the intermediate factors between TBI and financial insolvency. In this review, we describe the intermediate factors that link TBI to financial problems and, ultimately, bankruptcy. We review previous evidence and provide anecdotal cases from the bankruptcy petitions of patients with TBI to illustrate the most common financial problems.
Factors linking TBI and bankruptcy Pre-existing debt
Figure 1 outlines the potential links between TBI and bankruptcy. Pre-injury financial vulnerability is important. Over a lifetime we take on a variety of debts. These include debts such as
mortgages or car loans that are secured against the asset. In theory, these secured debts are less risky for lenders because, in the event of defaulting on repayments, the asset can be repossessed. However, in practice it is not that straightforward. Home equity loans and house price decreases mean that some individuals are unable to sell their homes to repay the whole debt. For patients with TBI, it is not uncommon for the value of the secured asset (i.e. an underinsured car) to be destroyed in the incident that caused the TBI. Many patients also have pre-existing unsecured debts and obligations such as student loans, credit card debt, store charge cards, alimony, child support payments and unpaid income tax. Some of these unsecured debts are taken on in the expectation that future income will be sufficient to repay them, a hope that may have to be revised after TBI. The financial vulnerability of US households has increased in recent years. The Financial Obligations Ratio (FOR) expresses consumer debt payments, mortgage payments, homeowner insurance, property tax, rental payments and automobile lease payments as a percentage of disposable income. The FOR has risen steadily from 13.8% in 1980 to a peak of 18.2% in 2006 (Board of Governors of the Federal Reserve System 2008). Total debt payments rise with the age of the household head until around age 45 and then fall steadily (Johnson & Li 2007). The rise of debt in early adulthood partially coincides with the demographic profile of TBI, which has peaks in infants, younger adults and the very elderly (Bruns, Jr. & Hauser 2003). Therefore, TBI often affects those least prepared to deal with the economic consequences. Uninsured Medical Bills
Financial problems caused by the TBI can quickly erode wealth. In figure 1, we delineate problems caused by direct medical costs, income loss and other non-medical direct costs. Medical bills are the most obvious and immediate financial concern after TBI. In unpublished data from our study of patients who survived a TBI (Hollingworth et al. 2007), the median hospital charge for acute care alone was $23,000 ranging up to a maximum of $744,200 for one patient who spent more than 80 days on the intensive care unit. Thirty six percent of patients were discharged to a rehabilitation unit or skilled nursing facility adding further to the medical bills. In the longer term, a study of patients with Medicaid insurance found that, more than one year after the TBI, average annual medical bills were approximately $8,000 per patient. These bills were predominantly made up of outpatient, residential and home health care services (Vangel, Jr. et al. 2005). It is estimated that, in the year 2000, the lifetime medical cost for an individual TBI caused by a motor vehicle collision ranges from $42,000 for the mildest injuries up to $249,000 for the most severe (Zaloshnja et al. 2004). Medical bills only result in medical debts if the patient is under- or uninsured. It is estimated that approximately 46.5 million Americans aged less than 65 do not have medical care insurance (The Kaiser Commission on Medicaid and the Uninsured 2007). At 31%, the probability of having no insurance is highest among young adults. In addition, many insured patients find that clauses in their contracts, including deductibles, co-insurance, insurance caps and coverage gaps, cause medical debts to accumulate at an unsustainable pace. Until recently, many States had alcohol exclusion laws that allowed insurance companies to deny medical care coverage for alcohol or narcotic-related injuries (Rivara et al. 2000), further complicating insurance claims.
Figure 1
Factors linking TBI, financial difficulties and bankruptcy
Pre-injury debts (e.g. mortgage, car loan, student loan, credit cards) and assets (e.g. real estate, savings, pension) Brain Injury
Direct Medical Costs Acute and rehabilitation medical bills
Indirect Costs Loss of job or earning power
Other Direct Costs Other costs (e.g. property damage, legal bills, personal injury claims, child care)
Inadequate health insurance
Inadequate disability or social security insurance
Inadequate liability insurance etc
Medical debts
Unable to service preexisting or new debt
Legal debts etc
Financial insolvency File bankruptcy
Loss of earnings and household productivity
Another financial concern is the ability of the individual with TBI to return to any paid work. This has domino effects for other household members who may give up work to provide care or take up work to compensate for lost income. Over a lifetime, these indirect costs of lost productivity may dwarf the direct medical costs. For the most severe brain injuries following a motor vehicle collision, Zaloshnja et al. (Zaloshnja et al. 2004) estimate that 69% of lifetime costs are due to lost productivity. Forty two percent of adults employed prior to TBI are unemployed one year after the injury compared to an expected rate of just 9% (Doctor et al. 2005). The absolute increase in risk of unemployment is highest in those with the most severe injuries and with the least education. Lack of employment has a negative effect on income, even after accounting for public income support programs such as Supplemental Security Income (SSI) and SSDI. In a study of persons with TBI, individual monthly income prior to injury was $1,700 of which 13% came from public income support programs. One year after injury the total had fallen to $1,200 of which 34% came from the public purse (Johnstone, Mount, & Schopp 2003). The study concluded that, post-injury, many individuals were probably living below the poverty line. Vocational outcomes cannot be viewed in isolation from medical bills. The majority of working-age Americans receives health insurance through employer-sponsored programs. Therefore inability to return to employment becomes an increasingly urgent issue as medical bills accumulate and employer-sponsored insurance is lost. Interim extensions of insurance, such as the Consolidated Omnibus Budget Reconciliation Act (COBRA) health benefit provisions, tend to be more expensive and are of limited duration. Even assuming that the injured individual successfully applies for SSDI and is, therefore, eligible for Medicare disability benefits 24 months later, there may be periods when insurance lapses. BRAIN INJURY PROFESSIONAL
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Other costs
Other consequences of the TBI and the event that caused the injury may strain finances. For the most severe brain injuries arising from motor vehicle collisions, Zaloshnja et al estimate that legal costs and property damage account for 7% and 1% of the total lifetime costs respectively (Zaloshnja et al. 2004). In extreme cases, jury awards for economic damages, such as medical care costs and lost income, and non-economic damages for pain and suffering may amount to several million dollars (Tovino & Winslade 2005). In many cases the person with the TBI is the plaintiff. However, others with TBI may find themselves as defendants in cases where they are deemed liable for the accident and injuries to others. Other smaller costs may accumulate over time. Although there has been little work to quantify these costs, home and automobile modification to cater for the needs of the person with TBI, travel and accommodation costs to receive care and additional child care expenses can all be important sources of financial stress. TBI may also have more subtle influences of household financial strength. Orbitofrontal brain damage and resulting executive dysfunction has been associated with disinhibition and impulsivity (Spinella, Yang, & Lester 2004). Therefore for some patients with TBI, the difficulties of managing debts may be compounded by poor financial decisions. Several studies have noted high divorce rates post-injury; one study (Wood & Yurdakul 1997) reported that 49% of individuals with TBI divorced or separated during the 5 to 8 years post-injury. It is unclear how this divorce rate compares to similar married couples in the absence of TBI. However, neurobehavioral changes post-injury clearly place pressure on relationships. And, for those families that do split up, financial difficulties will be exacerbated by legal costs and increases in previously shared costs such as accommodation and utilities. Overall Impact
Very few researchers have tried to provide an overview of the impact of a TBI on household finances. Work from the 1980s, interviewing spouses of individuals with head injury, found that 48% had to borrow money, 26% lost possessions or sold a house and 9% declared bankruptcy (McMordie & Barker 1988). More recent work found that 79% of parents of children with severe TBI reported financial 26 BRAIN INJURY PROFESSIONAL
problems 1 month after the injury (Osberg et al. 1997). This proportion had fallen to 57% by 6 months after the injury. At six months post-injury, 71% of parents reported that time was lost from work because of the childâ&#x20AC;&#x2122;s care needs. In our own work, examining bankruptcy rates before and after injury, we found that 3.5% of adults with brain or spinal cord injury filed for bankruptcy within 5 years after injury (Hollingworth et al. 2007). This represented a 33% increase on the bankruptcy rate before the injury, although this estimate is not statistically precise because of a relatively small number of bankruptcies. The most vulnerable group were patients with Medicaid acute care insurance, where bankruptcy rates more than doubled after injury.
Anecdotal bankruptcy case studies We have outlined some of the many possible links between TBI and financial difficulties. These factors may act in combination to bring about insurmountable problems that result in bankruptcy. To illustrate this, we have selected three case studies from the bankruptcy petitions of individuals with previous TBI. All were treated at a major trauma center and details were recorded in the institutionâ&#x20AC;&#x2122;s trauma registry. Additional financial information was taken from the bankruptcy petition in which petitioners report current assets, debts, income and expenses. The cases are selected from our original research study that was approved by our institutional review board. The first bankruptcy case involved a middle-aged female. She was transferred to the trauma center from another hospital with mild TBI and cervical spine injury following a motor vehicle accident. After a two-day inpatient stay, she was discharged home with hospital bills totalling more than $30,000. According to the hospital database, she had private medical insurance. Some nine months later she filed for bankruptcy. At the time of bankruptcy she was employed and earning about $20,000 gross income per annum. There was no evidence that this income had declined in the previous two years. Her total assets were reported as approximately $14,000 with total debts of $70,000. More than 80 percent of her debts were clearly identifiable as medical debts including the entire bill for acute care. It is possible that her insurance status was incorrectly coded in the hospital database, the insurer may have denied coverage, or the bankruptcy
petition may have been filed before the insurer had reimbursed the hospital. In any case, it is highly likely that her bankruptcy would not have occurred but for the injury and that the bankruptcy could have been prevented through more adequate insurance against medical debt. The second bankruptcy case was a female with more severe TBI. She was involved in a pedestrian versus motor vehicle accident. On admission she had a Glasgow Coma Score of 3 and spent about two weeks in hospital. Total acute care hospital bills were in the region of $60,000; according to the hospital database she had insurance through the Medicaid program. After acute care, she was discharged to a skilled nursing facility. At the time of bankruptcy, two years later, she had about $4,000 in personal assets and $150,000 in unsecured debt. She had a pending personal injury claim against an uninsured motorist. She reported no income from work in the previous two years and received approximately $500 monthly income from the Department of Social and Health Services and food stamps. A social security disability claim was pending. Although she did have medical debts of about $5,000, they accounted for less than 5% of debt. She had more than $100,000 in student loan debt. In this case, it appears that loss of income due to TBI and failure to get timely compensation through the legal system or income support through SSDI all contributed to bankruptcy in an individual who was financially vulnerable due to pre-existing debts. The final bankruptcy case is a young adult female who suffered a mild TBI in a motor vehicle accident. She spent one day in acute inpatient care and was discharged home. The acute care hospital bill and medical insurer were not recorded. At the time of bankruptcy, just over one year later, she reported about $2,000 in assets, $50,000 in debt and an annual earned gross income of $15,000. Approximately 2% of her debts at bankruptcy were medical bills. By far the largest single debt was a $45,000 personal injury claim awarded to other parties involved in the accident. In this case it seems very likely that it was not the TBI itself, but rather the accident and specifically the lack of adequate auto insurance that caused the subsequent financial problems. These three examples demonstrate the multifaceted nature of the relationship between injury and economic outcomes. Because of this complexity, it would be unrealistic to expect isolated policy changes
to solve the financial difficulties of all individuals after TBI. However, from these examples we can speculate that partial solutions could involve a more comprehensive medical insurance system, faster access to disability insurance for individuals with TBI, stricter auto insurance requirements and further investment in vocational and rehabilitation programs.
Summary In 1988, one of the few papers examining the financial impact of head injury (McMordie & Barker 1988), noted that existing work typically “suggest[s] the financial costs are steep... ...while providing no data”. The situation has not advanced substantially in twenty years. We know that the overall cost of TBI to society is huge, but the actual financial trauma caused to individual families is still a hidden issue. Navigating the maze of public and private medical insurance, disability insurance and income support options is often time consuming and extremely frustrating for families and impedes access to needed health care. Publications such as the Brain Injury Association of America’s guide for families and carers of individuals with brain injury (Rocchio 2008) are extremely valuable resources for families seeking financial help. However, because the system of support is so fragmented, it is inevitable that individuals with TBI and their families will continue to slip through the gaps and fall into poverty as a consequence of the injury.
fect on patient outcomes and cost-effectiveness; patterns of and reasons for clinicians’ adoption of emerging technologies and abandonment of obsolete technologies.
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Associated Press. Injury decimates finances of soldier’s parents. msnbc online . 2007. Ref Type: Newspaper Board of Governors of the Federal Reserve System. Household debt service and financial obligations ratios. http://www.federalreserve.gov/releases/housedebt/ . 2008. Ref Type: Electronic Citation Bruns, J., Jr. & Hauser, W. A. 2003, “The epidemiology of traumatic brain injury: a review”, Epilepsia, vol. 44 Suppl 10, pp. 2-10. Doctor, J. N., Castro, J., Temkin, N. R., Fraser, R. T., Machamer, J. E., & Dikmen, S. S. 2005, “Workers’ risk of unemployment after traumatic brain injury: a normed comparison”, J Int Neuropsychol.Soc, vol. 11, no. 6, pp. 747-752. Finkelstein, E., Corso, P., & Miller, T. 2006, The Incidence and Economic Burden of Injuries in the United States Oxford University Press, New York. Flaada, J. T., Leibson, C. L., Mandrekar, J. N., Diehl, N., Perkins, P. K., Brown, A. W., & Malec, J. F. 2007, “Relative risk of mortality after traumatic brain injury: a population-based study of the role of age and injury severity”, J Neurotrauma, vol. 24, no. 3, pp. 435-445. Hollingworth, W., Relyea-Chew, A., Comstock, B. A., Overstreet, K., & Jarvik, J. G. 2007, “The risk of bankruptcy before and after brain or spinal cord injury: a glimpse of the iceberg’s tip”, Medical Care, vol. 45, no. 8, pp. 702-711. Johnson, K. & Li, G. 2007, Do High Debt Payments Hinder Household Consumption Smoothing? FEDS Working Paper No.2007-52. Johnstone, B., Mount, D., & Schopp, L. H. 2003, “Fi-
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nancial and vocational outcomes 1 year after traumatic brain injury”, Arch Phys Med Rehabil, vol. 84, no. 2, pp. 238-241. McMordie, W. R. & Barker, S. L. 1988, “The financial trauma of head injury”, Brain Inj, vol. 2, no. 4, pp. 357364. Osberg, J. S., Brooke, M. M., Baryza, M. J., Rowe, K., Lash, M., & Kahn, P. 1997, “Impact of childhood brain injury on work and family finances”, Brain Inj, vol. 11, no. 1, pp. 11-24. Rivara, F. P., Tollefson, S., Tesh, E., & Gentilello, L. M. 2000, “Screening trauma patients for alcohol problems: are insurance companies barriers?”, J Trauma, vol. 48, no. 1, pp. 115-118. Rocchio, C. 2008, Challenges, Changes and Choices: A Brain Injury Guide for Families and Caregivers, Brain Injury Association of America. Spinella, M., Yang, B., & Lester, D. 2004, “Prefrontal system dysfunction and credit card debt”, Int J Neurosci, vol. 114, no. 10, pp. 1323-1332. The Kaiser Commission on Medicaid and the Uninsured 2007, The Uninsured - A Primer, The Henry J Kaiser Family Foundation. Thurman, D. J., Alverson, C., Dunn, K. A., Guerrero, J., & Sniezek, J. E. 1999, “Traumatic brain injury in the United States: A public health perspective”, J Head Trauma Rehabil, vol. 14, no. 6, pp. 602-615. Tovino, S. & Winslade, W. 2005, “A Primer on the Law and Ethics of Treatment, Research, and Public Policy In the Context of Severe Traumatic Brain Injury”, Annals of Health Law, vol. 14, pp. 1-54. Vangel, S. J., Jr., Rapport, L. J., Hanks, R. A., & Black, K. L. 2005, “Long-term medical care utilization and costs among traumatic brain injury survivors”, Am J Phys Med Rehabil, vol. 84, no. 3, pp. 153-160. Wood, R. L. & Yurdakul, L. K. 1997, “Change in relationship status following traumatic brain injury”, Brain Inj, vol. 11, no. 7, pp. 491-501. Zaloshnja, E., Miller, T., Romano, E., & Spicer, R. 2004, “Crash costs by body part injured, fracture involvement, and threat-to-life severity. United States, 2000”, Accid Anal Prev, vol. 36, no. 3, pp. 415-427.
About the Authors
Jeffrey G. Jarvik, MD, MPH, is a professor in the Departments of Radiology, Neurological Surgery and an Adjunct Professor in the Department of Health Services at the University of Washington. Dr. Jarvik received both his BA and MD from the University of California, San Diego. He did his residency in Diagnostic Radiology and fellowship in Neuroradiology at the University of Pennsylvania. He then moved to Seattle where he was a Robert Wood Johnson Clinical Scholar at the University of Washington (UW). He received his Masters in Public Health (MPH) in Health Services from UW and joined the faculty with a primary appointment in the Department of Radiology. He has served as Director of the Neuroradiology Fellowship training program and Chief of Neuroradiology. He is currently the director of the Comparative Effectiveness, Cost and Outcomes Research Center at the University of Washington. William Hollingworth, PhD, is a Senior Lecturer Health Economics, Department of Social Medicine, University of Bristol, United Kingdom. His research focuses on the impact of illness and injury on the financial solvency of patients and their families; the diagnostic and therapeutic impact of medical imaging and its afBRAIN INJURY PROFESSIONAL
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bip expert interview Most pressing issues currently facing persons with brain injury An Interview with Dr. Jim Schraa, Craig Hospital What do you see are the most pressing issues for persons with brain injury in accessing rehabilitation and ongoing support? In the case of catastrophic central nervous system injuries we have allowed the traditional purpose of insurance to be subverted. Currently people are increasingly sold “subprime” health insurance that is insufficient to protect them financially and to rehabilitate them. They are issued the financial product of insurance and the product they are sold does not perform when a severe injury occurs. Often cognitive therapy is not even included as a covered benefit. The poorly designed insurance product damages their right to maintain as much independence as possible and pursue a happy future. The “subprime” insurance problem weakens rehabilitation programs because there is not enough funding for therapists to be able to effectively and completely do their jobs. This is a huge public policy problem in that patients with insufficient rehabilitation benefits are more likely to stay institutionalized and to become chronic patients with very high health care costs and a poor quality of life. Over 100,000 Americans sustain disabling brain injuries and spinal cord injuries a year. The lack of sufficient insurance for rehabilitation is an annual tragedy for many families that we have slipped into accepting. The problem is that we have not yet been successful in focusing the attention of various levels of government on the fact that civilian traumatic brain injury rehabilitation is one area where providing sufficient and timely treatment would both meet the responsibility of the government to “promote the general welfare” and cut long term government costs. A priority in public policy advocacy is to secure the cooperation of government in looking at the societal consequences of insufficient insurance for rehabilitation. What do you see is the most important issue in future legislative advocacy for patients with brain injury? An innovative way of looking at the question is that we want the government to function in a more business-like manner. That is, we need our government to do better cost accounting on issues such as rolling the financial costs from private insurers to the government for severe injuries. In terms of Medicaid, many states have policies that have the effect of delaying the availability of treatment even for patients with initial Glasgow Coma Scale Scores of 8 or less. Holding back on treatment during the early months post injury does not allow the positive interaction between neurological recovery and rehabilitation to maximize treatment gains. Not providing Medicaid in a timely way results in less intensive rehabilitation and a higher level of long term disability. It is cost inefficient in that these 28 BRAIN INJURY PROFESSIONAL
patients generate costs that exist, but the immediate financial figures are on someone else’s budget line or not included in any accounting. We need the government to fund studies which include consideration of the full societal cost of not maximizing rehabilitation in moderate to severe traumatic brain injuries. This translates into the need for professionals in the TBI rehabilitation field to participate in electing representatives who we can work with to deliver more effective care. This means supporting candidates for Congress who belong to or are willing to join the brain injury caucus. How do you envision persons with like disabilities being able to collectively advocate for legislative issues in the future and do you see an important next step? Disability advocacy groups for stroke, epilepsy, TBI and spinal cord need to support each other so that governmental entities come to recognize that these are very specialized expensive injuries where public policy initiatives founded on clinical experience and research can promote patient independence and reduce costs. Where the groups can present coordinated proposals to legislative aids they will secure more cooperation and follow through. For example, patients with TBI involving the brain stem and spinal cord injury patients have greater independence and are less likely to be re-institutionalized if they have access to the right durable medical equipment. Unfortunately, recently there have been a variety of actions that have negatively impacted access to durable medical equipment. The groups need to work together on such issues. More importantly all of the disability advocacy groups for acquired central nervous system injuries need to work together to make sure that discussions related to “health care reform” include the clinical realities of central nervous system injuries rather than just overgeneralizations based upon economic studies that have methodological problems. Folks in the rehabilitation field need to participate in public forums on health care reform and ask questions that force the “experts” to take into consideration issues related to trauma and rehabilitation. What impact do you see brain injury as the signature injury of the Iraq and Afghanistan conflict having on civilians with brain injury? My father-in-law was an old marine. He used to say that the purpose of the marines was to keep civilians safe. The service members with severe injuries from OIF/OEF are still keeping their fellow citizens safe by demonstrating how much time in inpatient rehabilitation with diffuse
axonal injuries from vehicle crashes require. Last year the figure reported at the International Neuropsychological Meeting was about 60 days. This is better data than any N.I.H. study. It demonstrates the patient needs sufficient rehabilitation to get better right now. The civilians being protected by the soldiers also need specialized rehabilitation to maximize their recovery. There is no way to thank the injured soldiers and their families enough for making society more aware of the importance of rehabilitation. Their experience is setting the standard for the length of treatment that civilian patients need in a way that even the most profit driven insurance executive will find difficult to dispute. It is important that rehabilitation professionals let their congressional representatives know that funding for Tricare has to be increased. It is impossible to stay in business if you are attempting to provide services for 20% less than Medicare. Furthermore, there needs to be a mandate that cognitive therapy is a covered Tricare benefit that will be authorized regardless of what part of the country people live in. Americans care about issues they can relate to. The traumatic brain injuries sustained by the soldiers have made TBI relevant and something of personal importance. The sacrifice of the soldiers and their families has brought TBI to the level of social consciousness. It never would have happened in another way. About Jim Schraa, PsyD
As a neuropsychologist at Craig Hospital, Dr. Jim Schraa has served and advocated for persons with brain injury and their family for more than 25 years. Dr. Schraa was an appointed member of the Colorado State Task Forces on Traumatic Brain Injury and Workers Compensation for the State of Colorado, Dept. of Labor and Employment. He is a member of the Legislative Committee of the Brain Injury Association of America and has been working closely with congressional legislative aides and members of the Congress to improve the treatment of active duty soldiers with TBI and veterans.In 2007 he testified before the House of Veterans Affairs Committee on the topic of the treatment of traumatic brain injury and has consulted with the Triwest Insurance Company on the treatment of traumatic brain injury for military personnel, retired military, and their families.
conferences 2008 AUGUST 14-17 – the 116th APA Annual Convention, San Francisco, CA. Contact: www. apa.org. SEPTEMBER 18-21 – 7th Mediterranean Congress of Physical Medicine & Rehabilitation Medicine, Potorose, Slovenia. Contact: marincek.crt@mail.ir-rs.si. 24-27 – 5th World Congress for NeuroRehabilitation, Rio de Janeiro, Brazil. Contact: traceymole@wfnr.co.uk. Rio de Janeiro, Brazil. Contact: traceymole@wfnr.co.uk. OCTOBER 2-4 – The North American Brain Injury Society’s Sixth Annual Brain Injury Conference, New Orleans Convention Center Marriott, New Orleans, Louisiana. Contact: conference@nabis.org, or call (703) 960-6500. 2-4 – The 21st Annual Conference on Legal Issues in Brain Injury, New Orleans Convention Center Marriott, New Orleans, Louisiana. Contact: conference@nabis.org, or call (703) 960-6500. 22-25 - National Association of Neuropsychology Annual Meeting, New York, NY. Contact: www.nanonline.org. BRAIN INJURY PROFESSIONAL
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legislative round-up Susan L. Vaughn, Editor, Legislative Issues “You can’t always get what you want. But if you try sometime you just might find you get what you need.” The Rolling Stones. Congress and state legislatures continue to debate and pass significant legislation impacting individuals with brain injury and their families. At the congressional level, these include the TBI reauthorization and fiscal year 2009 appropriations for federal programs; moratorium on several Medicaid regulations; mental health parity; physicians’ reimbursement under Medicare; and a bill to restore certain provisions under the Americans with Disabilities (ADA) Act. On April 28, President Bush signed S. 793, the “Traumatic Brain Injury Act of 2008,” which reauthorizes appropriations for the Centers for Disease Control and Prevention (CDC) TBI Program and the Health Resources and Services Administration (HRSA) Federal TBI Grant Program. The legislation expands HRSA’s State Grant Program to include the American Indian Consortium as an eligible recipient. Congress added a new section that directs CDC, National Institutes of Health (NIH), Department of Defense (DoD) and Department of Veterans Affairs (VA) to submit a report to Congress on methods for collecting and disseminating compatible epidemiological studies on the incidence and prevalence of TBI in the military and veterans populations that return to civilian life. Senators Orrin Hatch (R-UT) and Ted Kennedy (D-MA) sponsored S. 793. Reps. Bill Pascrell, Jr. (D-NJ) and Todd Platts (R-PA) sponsored the House version. The House and Senate have included a moratoriaum on Medicaid regulatory changes in their war supplemental bills. The federal Medicaid agency issued regulations affecting targeted case management, school-related health services and optional rehabilitation services that would result in decreased Medicaid entitlement spending, shifting costs to the states. The House Appropriations Labor, Health and Human Services and Education Subcommittee approved the FY 2009 appropriations bill that funds most of the programs that impact people with disabilities and their families. The Subcommittee’s figures had not been released to the public before this article went to print. The Senate Subcommittee also passed its version that would exceed the Administration’s proposed budget for the three departments by $7.2 billion. As the President has threatened to veto any appropriations bill that is above the Administration’s recommended level, there has been speculation that Congress will pass Continuing Resolutions (CRs) to maintain funding for federal programs at 30 BRAIN INJURY PROFESSIONAL
current levels until a new president assumes office next January. Mental health parity legislation is moving forward, although the mechanism for funding the measure has yet to be determined. The bill requires that most group health plans provide coverage for the treatment of mental illnesses comparable to that provided for physical illnesses. On June 20, Reps. Charles B. Rangel (D-NY) and John D. Dingell (D-MI) introduced the “Medicare Improvements for Patients and Providers Act of 2008”, which will prevent the pending 10 percent reduction in Medicare payments for physicians and will enhance preventive and mental health benefits. The House passed the bill June 24. Congress is also moving forward on the “ADA Amendments Act” to improve the legal outcomes of people with disabilities who bring employment discrimination cases before the courts. These cases have largely been unsuccessful due to the narrow interpretation of disability by the Supreme Court. Most state legislatures have adjourned their regular session. Utah and Vermont passed TBI Trust Fund legislation, although Utah’s bill did not provide a funding mechanism. The Vermont bill extends services to returning troops with TBI and their families. Indiana legislators passed legislation to change the source of funding for the Spinal Cord and Brain Injury Fund that was enacted last year. Almost half of the states now have legislation that establishes a trust fund for programs and services. Increasing numbers of state legislatures have passed legislation and resolutions to help returning troops with TBI and related conditions. Michigan Governor Jennifer M. Granholm signed a bill that requires the Michigan Department of Military and Veterans Affairs to administer a post traumatic stress disorder (PTSD) and a TBI questionnaire to National Guard returning from Operation Iraqi Freedom or Operation Enduring Freedom who have not completed similar questionnaires approved by the VA or DoD. Illinois passed similar screening legislation last year. In March, Virginia Governor Timothy M. Kaine signed legislation that requires the Virginia Department of Veterans Services, the Department of Mental Health, Mental Retardation and Substance Abuse, and the Department of Rehabilitative Services to coordinate mental health and rehabilitative services for returning servicemembers. Minnesota and Virginia legislators increased funding for a range of services and benefits for returning military personnel with brain injury. With pending elections this fall, members of Congress and state legislatures are frequently in their home districts meeting with their constituents to discuss issues of importance. This presents an excellent opportunity for all who are involved in brain injury rehabilitation, research, prevention, community and long-term services to meet with legislators and discuss their needs and concerns. About the Editor
Susan L. Vaughn of S.L. Vaughn & Associates, consults with states on service delivery and serves as the Director of Public Policy for the National Association of State Head Injury Administrators. Ms. Vaughn retired from the State of Missouri after nearly 30 years, where she served as the first director of the Missouri Head Injury Advisory Council. She founded NASHIA in 1990, and served as its first president..
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non-profit news Brain Injury Association of America The Caregivers’ Conference, held Jun 6-8 in Dallas, was a smashing success! Planning is underway for the 4th Annual Brain Injury Business Practices College at the Westin Casuarina in Las Vegas on Nov 10-12. This year’s program features interactive workshops on admissions, contracting, reauthorization, billing, collections and more. Currently we are lobbying for TBI Act appropriations and TRICARE coverage of cog rehab and will soon launch a new online National Directory, an improved online Bookstore, and a new online AACBIS application process. Please visit www.biausa.org for more details.
Brain Trauma Foundation The Brain Trauma Foundation is in the process of enhancing one of our flagship programs, TBI-trac™. The primary clinical tool of our QI program is a secure database which allows each trauma center to examine its own performance and also to benchmark its results with the other participating trauma centers in our program. TBI-trac™ is designed to help trauma centers measure and monitor their performance on key clinical indicators based on established best practice guidelines for TBI care. Participants use TBI-trac™ as a routine part of their ongoing monitoring and evaluation process to identify areas for improvement and to share information with clinical department chairs, quality and performance improvement coordinators, and senior administration personnel. The centers can also combine TBI-trac™ data with other internal data sources to reveal cost saving opportunities associated with improvement strategies. The upgraded version of TBI-trac™will be available this summer and will be more user friendly with new criteria, new fields and new reporting functions. If you are interested in taking part in the program please contact the Brain Trauma Foundation at www. braintrauma.org.
International Brain Injury Association The Seventh World Congress on Brain injury of the International Brain Injury Association was held in conjunction with the Portuguese Society of PRM in Lisbon, Portugal, from April 9-12, 2008. A pre-congress, one day symposium on MTBI, co-sponsored with the World Federation of Neurological Rehabilitation (WFNR), was held on April 8. The event was an overwhelming success with delegates from every corner of the world in attendance. IBIA looks forward to meeting all those who joined us in Lisbon, as well as new participants, in the Spring of 2008 for the Eighth World Congress on Brain Injury scheduled to be held in the United States. Dr. Ross Zafonte, Chairman of the Department of PM&R at Harvard, has
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been named President for the 2010 meeting and we look forward to working together with him to make the next meeting the biggest and best IBIA meeting in the organization’s history. Details will be posted on our website, www.internationalbrain.org.
National Association of State Head Injury Administrators Join us at our 19th Annual State of the States in Head Injury Conference September 9-12 in Williamsburg, VA “Revolutionizing Systems of Care: Leading the Way”. This meeting will feature keynote speakers who will present on Federal legislation and policies impacting TBI and state services, national trends and cross cutting issues. There is a pre-conference meeting on September 9th- “TBI Model Systems and Evidence Based Practices: Linking Research to Service Delivery”. Check out the brochure and registration information at www.nashia.org. We are delighted that the TBI Act has been reauthorized. Once again we are asking for an increase in appropriations to $21 million for the HRSA Federal TBI Program to provide funding for States ($15 million) and Protection & Advocacy Systems ($6 million); and $9 million for the Centers for Disease Control and Prevention TBI Program. Be sure to contact your Congressional representative. Check out the NASHIA website (www.nashia.org) to obtain the latest information on state systems development to meet the needs of individuals with brain injury and their families.
The North American Brain Injury Society The North American Brain Injury Society is hard at work putting the finishing touches on our Sixth Annual Conference on Brain Injury and the concurrent event, the 21st Annual Conference on Legal Issues in Brain Injury. Both meetings will be held at the New Orleans Convention Center Marriott on October 2 – 4, 2008. In all, over 60 of the leading experts from North America will present the latest advances in the science, rehabilitation and treatment of traumatic brain injury. Building on the success of last year’s Blast Injury Institute sessions, NABIS is again planning a comprehensive series of educational offerings that will specifically address the unique challenges presented by wartime brain injury caused by blast. Brain injury professionals working in the military or VA settings are strongly encouraged to attend these sessions. Visit the NABIS website for more information on these conferences (and to register as space is going fast), and also download a copy of “Barriers and Recommendations: Addressing the Challenge of Americans with Brain Injury,” a new consensus document that calls for major reforms within the military and civilian sectors and addresses the realities facing Americans with brain injury. See www.nabis.org for more information.
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For more than 120 years, Bancroft NeuroHealth has helped people with brain injuries rebuild their lives, step by step. Our person-centered programs are based on the needs of each individual, with the goal of helping each person reach his or her maximum level of independence and lead the most fulfilling life possible. With a range of community-based and campus-based options, Bancroft provides a full continuum of life skills rehabilitation at several locations in New Jersey. These include a return to school, work, social and recreational activities. Our outcomes-oriented planning encourages personal achievement — leading to both greater independence and reduced costs.
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Serving the community for two decades, Beechwood has expanded its TBI offering to encompass broad neurological services as well as new Behavioral Remediation and Late Adolescent programs. In addition to TBI, we serve individuals with brain damage due to: • Anoxia/Hypoxia due to drowning, heart attack, drug overdose, alcohol poisoning, anesthesia errors, etc.
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RARE DEDICATION.
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Craig Hospital in Denver is
exclusively dedicated to specialty rehabilitation and research for persons with spinal cord injury and traumatic brain injury. Craig is committed to helping rebuild lives following catastrophic injury — and to unsurpassed clinical outcomes, patient and family satisfaction, and financial value for the insurance industry and society. As an international leader in the field, Craig consistently serves more than 1,700 inpatients
and outpatients from 48 to 50 states each year. Craig is federally designated by NIDRR as a Model Systems Center for SCI and TBI, and is the NIDRR TBI National Data and Statistical Center. Craig has been ranked in the Top 10 Rehab Hospitals since the rankings began in 1990, and is one of only a few Magnet® Recognized rehabilitation hospitals in the U.S. The success of our patients is due to Craig’s focused expertise and resources, remarkable longevity of staff and physicians, large patient milieu, family services and on-site housing, financial stability and an upbeat culture of contagious caring and compassion. As a non-profit, independent hospital governed by a volunteer board of directors, the Craig “family” is dedicated to delivering the highest quality of rehabilitation treatment available anywhere. Ask anyone who has ever been associated with Craig Hospital and you’ll receive a consistent answer: Craig is a very special place. We look forward to serving you.
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