Brain Injury as a Chronic Condition by Brain Injury Professional

BR A IN INJURY professional vol. 10 issue 1

The official publication of the North American Brain Injury Society

Brain Injury as a Chronic Condition Rethinking Brain Injury Implications for Public Policy Implications for Education Implications for Medical Practice Implications for Research Implications for Psychosocial Interventions BRAIN INJURY PROFESSIONAL

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contents

BRAIN INJURY professional vol. 10 issue 1

The official publication of the North American Brain Injury Society

north american brain injury society

29 legal spotlight

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

33 literature review

brain injury professional

departments 4 editor in chief’s message 6 guest editor’s message

34 bip expert interview 36 non-profit news 38 legislative roundup

features 8 Rethinking Brain Injury by Flora M. Hammond MD & James F. Malec, PhD 12 Brain Injury as a Chronic Condition:Implications for Public Policy By Susan H. Connors, John D. Corrigan, PhD (Group Facilitators); Mark J. Ashley, ScD; Ruth Brannon, MSPH, MA; Amy C. Colberg, MA; Wayne A. Gordon, PhD; Karen Gratten; John T. Hinton, DO, MPH; Peter W. Thomas, JD; Ronald C. Savage, EdD; Susan L. Vaughn, MEd. 16 Brain Injury as a Chronic Condition: mplications for Education By Harvey E. Jacobs, PhD, CLCP (Group Facilitator); Beatriz Colon Abreu, PhD, OTR; Roberta DePompei, PhD; Timothy R. Elliott, PhD, ABPP; Gerard E. Francisco, MD; Lynn H. Gerber, MD; Richard A. Huang, MD; Kurt A. Mossberg, PhD, PT. 18

Brain Injury as a Chronic Condition: Implications for Medical Practice By Kathleen Bell, MD (Group Facilitator); Gina Armstrong, MD; Julia Fidler Dixon, MS; Stephen Flanagan, MD; Cindy Ivanhoe, MD; Brent E. Masel, MD; Nancy L. Swigonski, MD, MPH; Dennis Zgaljardic, PhD. 22 Brain Injury as a Chronic Condition: Implications for Research By Mark Sherer, PhD (Group Facilitator); Sureyya Dikmen, PhD; Flora Hammond, MD; Jacob Kean, PhD; Kenneth Ottenbacher, PhD; Elizabeth Protas, PhD; Gale Whiteneck, PhD. 26 Brain Injury as a Chronic Condition: Implications for Psychosocial

Interventions By Lance Trexler, PhD (Group Facilitator); D’Andrea Anders, MD; Cynthia Braden, MA, CCC; Margaret Brown, PhD; Charles Christensen, EdD; Keith Cicerone, PhD; James Malec, PhD; Angelle Sander PhD; Gary Seale, PhD.

publisher J. Charles Haynes, JD Editor in Chief Ronald C. Savage, EdD Editor, Legal Issues Frank Toral, Esq. Editor, Legislative Issues Susan L. Vaughn Editor, Literature Review Debra Braunling-McMorrow, PhD Editor, Technology Tina Trudel, PhD founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Megan Bell

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

editorial inquiries Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Website: www.nabis.org Email: contact@nabis.org

advertising inquiries Megan Bell Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Email: mbell@hdipub.com

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. © 2013 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 mbell@hdipub.com

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editor in chief’s message

Ronald Savage, EdD Thanks to the Moody Foundation and philanthropist Robert L. Moody, Sr, each year Dr. Brent Masel, M.D, Dr. Betty Protas, PhD, and their staff at University of Texas Medical Branch – Galveston School of Health Professions and the Transitional Learning Center of Galveston, bring together professionals from around the country to tackle some of the most complex problems in brain injury rehabilitation and treatment. For those of us who have attended these “brain injury think tanks”, i.e., The Galveston Brain Injury Conference (GBIC), the GBIC is always one of the most intellectually stimulating and collaborative meetings we have ever attended. “All egos are

left at the door” as Dr Masel directs, “This is the time we all think and think hard.” Needless to say, over the years this meeting has taken on some of the toughest and most complex issues in brain injury rehabilitation and set forth recommendations and plans to “make the world a better place for people with brain injuries and their families” (Dr. Masel again!). This year, Dr. Flora Hammond and Dr. James Malec led a meeting of 50 professionals from various disciplines to better understand and examine the implications of reframing brain injury as a chronic condition. The core principals around this thinking were based upon a seminal paper written by Dr. Masel and his colleague, Dr. Douglas DeWitt (2010). While families and professionals have long recognized that traumatic brain injury is often associated with increased risk for dementia and Parkinsonism, cognitive impairments and decline, seizures and hormonal disorders, long term emotional and social problems, and school failure and unemployment, we have usually identified TBI as an “injury” that needs to be rehabilitated rather than as a chronic condition that requires more of a disease management model. As GBIC participants noted, citing from the World Health Care (WHO) “General Principles of Good Chronic Care”, a chronic disease management (CDM) approach has been found to be the optimal way to address other medical conditions, such as, diabetes, asthma, high blood pressure, high

cholesterol, that expose affected individuals to additional medical risks. So... why not traumatic brain injury? In this issue of BIP, Dr. Hammond and Dr. Malec have asked GBIC participants to address five key issues in re-framing our thinking about TBI as a chronic condition from several perspectives, including developing a consensus definition of Chronic Brain Injury (CBI). And, as Dr. Masel states in his interview, “Physicians spend a lot of time in school learning about obscure diseases (especially neurologists like me) and yet we’re not taught about a medical condition like brain injury that every single medical specialist will encounter over and over. Chronic brain injury MUST be a part of every health care student’s curriculum. “ NABIS wants to thank Dr. Hammond and Dr. Malec for this issue of BIP that summarizes the proceedings of the 2012 GBIC. Their leadership of this conference addressing a very complex issue is remarkable. Both Flora and Jim have dedicated hours and hours of their expertise and experience in helping all of us re-think TBI as a chronic condition. Most importantly, the proceedings of this conference will help change the way we think about long term brain injury recovery and, hopefully, direct multiple resources (government, insurance, medical, clinical, etc.) towards proactively managing traumatic brain injury as a lifelong condition to improve health, independent functioning and participation in society. Ronald Savage, EdD

2012 galveston brain injury conference participants Beatriz Colon Abreu, PhD, OTR D’Andrea Anders, MD Gina Armstrong, MD Mark J. Ashley, ScD Kathleen Bell, MD Cynthia Braden, MA, CCC Ruth Brannon, MSPH, MA Margaret Brown, PhD Charles Christensen, EdD Keith Cicerone, PhD Amy C. Colberg, MA 4

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Susan H. Connors John D. Corrigan, PhD Roberta DePompei, PhD Sureyya Dikmen, PhD Julia Fidler Dixon, MS Timothy R. Elliott, PhD, ABPP Stephen Flanagan, MD Gerard E. Francisco, MD Lynn H. Gerber, MD Wayne A. Gordon, PhD Karen Gratten

Flora Hammond, MD John T. Hinton, DO, MPH Richard A. Huang, MD Cindy Ivanhoe, MD Harvey E. Jacobs, PhD Jacob Kean, PhD James Malec, PhD Brent Masel, MD Kurt A. Mossberg, PhD, PT Kenneth Ottenbacher, PhD Elizabeth Protas, PhD

Angelle Sander PhD Ronald C. Savage, EdD Gary Seale, PhD Mark Sherer, PhD Nancy L. Swigonski, MD Peter W. Thomas, JD Lance Trexler, PhD Susan L. Vaughn, MEd. Gale Whiteneck, PhD Dennis Zgaljardic, PhD

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guest editors’ message

James Malec, PhD and Flora Hammond, MD

The Galveston Brain Injury Conference (GBIC) is an invited forum that provides the opportunity for experts in the field of brain injury (BI) to come together for two days to discuss topics of importance to the care of individuals living with the effects of BI. A “Think Tank” that has convened annually since 2000, the GBIC is coordinated and sponsored by the University of Texas Medical Branch – Galveston Health School of Health Professions and the Transitional Learning Center of Galveston. The GBIC in 2011 and 2012 discussed the concept of BI as a chronic condition and how chronic disease conceptualization may help improve care and outcomes. Fifty experts in BI research and treatment convened at the GBIC in May 2012 to examine the implications of reframing BI as a chronic disease. After thoughtful consideration, the experts developed the following consensus statement: “Injury to the brain can evolve into a lifelong health condition termed Chronic Brain Injury (CBI). CBI impairs the brain and other organ systems and may persist or progress over an individual’s lifespan. CBI must be identified and proactively managed as a lifelong condition to improve health, independent functioning and participation in society.”

CBI is a complex set of disorders that impairs multiple brain and other bodily functions. Impaired function can occur at the time of initial insult to the brain or result from degenerative processes triggered by one or more brain injuries. CBI can both cause and accelerate such degenerative processes. The consequences of CBI include physical, cognitive, and behavioral deficits that may manifest at different points throughout an individual’s lifespan. The effects of CBI on psychological and social functioning can be severe, resulting in unemployment, family dysfunction, substance abuse, incarceration, homelessness and other causes of dependence on social support programs. The cost of providing services designed to lessen the likelihood of these devastating outcomes must be weighed against the cost of these outcomes on society. Addressing the deleterious effects of CBI requires research, specialized medical and rehabilitative treatment, psychosocial services, and education. While medical and rehabilitative treatment is required upon injury, effectively managing BI as a chronic condition in some individuals requires multiple psychosocial services in a wide variety of settings to address ongoing needs. Public policy and health care coverage policies must be appropriately designed to meet the needs of these individuals. After reaching consensus on the issue of BI as a chronic condition, the large gap between the current status and the desired status of care that adequately addresses the long term needs of individuals with BI and their families was clear. Less obvious was how to create the needed changes. The GBIC of 2012 focused on this gap between where we are now and where we should be. The GBIC attendees brainstormed on the steps that are needed to bridge the gap with a focus in five areas: Research, Medical, Psychosocial, Education, and Public Policy. This issue of the Brain Injury Professional summarizes the proceedings of the 2012 GBIC. The opinions expressed here represent the consensus opinions of the 2012 GBIC conference attendees, and not the positions or policies of the institutions or agencies with which they are or were affiliated. Flora Hammond, MD and James Malec, PhD

about the guest editors Flora M. Hammond, MD is a board certified physiatrist who completed her medical degree at Tulane University School of Medicine, Physical Medicine and Rehabilitation (PM&R) residency at Baylor College of Medicine, and brain injury fellowship at the Rehabilitation Institute of Michigan. Since December 2009, Dr. Hammond has served as the Covalt Professor and Chair of PM&R at the Indiana University School of Medicine (IUSM) and Chief of Medical Affairs at the Rehabilitation Hospital of Indiana (RHI). She also serves as the RHI Brain Injury Program Medical Director and Director of the NIDRR-funded TBI Model System at IUSM/RHI. Dr. Hammond is an experienced researcher who has conducted numerous clinical trials and prospective multicenter studies. She has authored more than 85 peer-reviewed publications. Her excellence in research, teaching, and administration has been acknowledged by receipt of the 2001 Association of Academic Physiatrists Young Academician Award 6

BRAIN INJURY PROFESSIONAL

from the Association of Academic Physiatrists and the 2011 Brain Injury Association of America William Caveness Award. James F. Malec, PhD is Professor and Research Director in PM&R IUSM and RHI, Professor Emeritus of Psychology at the Mayo Clinic, and Board Certified in Clinical Neuropsychology and in Rehabilitation Psychology. Dr. Malec is currently Co-Director of the IUSM/RHI TBI Model System and directed the Mayo TBI Model System from 1999 through 2007. For the past 30 years, he has worked as a clinician and researcher in neuropsychology and brain injury rehabilitation with a particular interest in postacute rehabilitation and outcome measurement. He has over 130 peer-reviewed publications, and has received a number of professional recognitions including: the North American Brain Injury Society Research Award, and the Moody Prize for Distinguished Initiatives in Brain Injury Research and Rehabilitation.

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Rethinking Brain Injury

by Flora M. Hammond MD & James F. Malec, PhD

To some degree, we always knew that brain injury (BI) was a complicates normal aging as the first cohorts of these early chronic condition. However, its presentation is often life- survivors reach more advanced age. In this article, we review threatening and dramatic with the initial medical response so the nature of BI as a chronic condition, associated risks and intensive, that it is easy to lose sight of the aftermath. After increasing risks with advancing age, and the potential benefits of the initial storm passes — for those who survive the storm—life applying chronic disease management (CDM) strategies over the is often never the same. Individuals with BI and their families life time of individuals living with BI. and close others often want to believe that once they leave the hospital things will soon return to normal. So early care Chronic BI: Associated Risks providers may not belabor the reality that the return to normal A recent Institute of Medicine (IOM) report (Ishibe et al., may take months if not years — and even then, it is likely to be 2009) on the long term consequences of BI found convincing evidence in the literature that a history of traumatic BI is to a “new normal.” Masel and DeWitt’s (2010) landmark article brought this associated with increased risk for dementia and Parkinsonism, cognitive impairments and decline, reality clearly into focus. They described the medical implications Picture any individual with BI familiar to you seizure and hormonal disorders as as long term emotional and and advantages of reconceptualizing and then imagine how his or her health and well social problems, and unemployment BI as a chronic condition rather than as an “injury” which, like a quality of life would be improved if this person (Table 1). Many of these risks broken bone, will heal with complete had the opportunity simply to receive regular may be compounded by a normal return to normal function. Although and routine follow-up with a written plan for aging process. Advancing age also risk for these same medical mechanisms remain controversial, ongoing care, education in self-management, increases conditions as well as for social renewed interest in chronic traumatic encephalopathy (CTE; McKee et and more intensive medical and psychosocial isolation and depression. The IOM reported suggestive evidence (Table al., 2009) reinforced this reality by interventions as required. 1) of increased risk for suicide and identifying individuals for whom psychosis and that many of the risks associated with moderatea traumatic BI appears to initiate a disease process resulting in severe traumatic BI may also be present in cases of milder injury. neurological deterioration. Marwitz and colleagues (2001) note that such co-morbid Survival after BI increased dramatically following the broader medical conditions may result in re-hospitalization after the initial availability of emergency response teams in the community injury, and that the reason for re-hospitalization varies with time in the 1970s. We are only now beginning to witness how BI 8

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Long term Changes After Traumatic BI: IOM Report Summary

table 1 Sufficient Evidence

Suggestive Evidence

• • • •

•

• •

• • •

Long term unemployment Diminished social relationships Depression & aggression Postconcussive symptoms: memory, dizziness, irritability Professional boxing: dementia pugilistica Moderate-severe: Hypopituitarism & GH insufficiency; Alzheimer-type dementia & Parkinsonism Moderate-severe & penetrating: unprovoked seizures Severe: cognitive deficits Penetrating: cognitive decline

•

• • •

Completed suicide and psychosis Mild with loss of consciousness: Alzheimer type dementia & Parkinsonism; ocular & visual motor disturbance Mild in Gulf War military populations: Post-Traumatic Stress Disorder (PTSD) Moderate: neurocognitive impairment Decreased drug & alcohol use (in 1st 3 years)

post-injury. Seizures and psychiatric disorders tend to present in the first years after trauma; whereas, other conditions requiring hospitalization are more typical five years post-injury. A single traumatic BI significantly increases the risk of a subsequent traumatic BI with potentially even more severe and cumulative effects (Coronado et al., 2013). The risk for substance abuse may decline in the first few years after injury (Table 1), probably because greater disability and supervision during this early period reduces access. Studies of substance abuse in BI may also be biased by the dependence on the subjective report which requires both honest reporting and successful follow up contact. Hammond et al. (2000) documented a pattern of increasing illicit drug use over the first five years following BI. Upon initial impression it appears there is a flat 8-15% illicit drug use during the first 5 years post-injury. However, 45-76% of those reporting drug use were new reports from individuals who had declined drug use

Change in Function Over Time: GOS-E

Figure 1

100%

%2 categ. Declined

%1 categ. Declined

%1 categ. Improved

%2 categ. Improved

8.8%

12.9%

11.5%

80%

60%

% no change

20.7%

23.7%

13.3%

8.2%

14.2%

48.2% 41.8%

39.2%

40%

Chronic Disease Management (CDM)

A chronic disease management (CDM) approach has been found to be the optimal way to address other medical conditions, such as, diabetes, asthma, high blood pressure, high cholesterol, that expose affected individuals to additional medical risks. Primary features of the CDM approach include: (1) integration of care across organizational boundaries that is supported with information and communication technology, e.g., telehealth, smartphone apps, (2) patient self-management, and (3) guideline implementation and systems to promote standardized care (Fitzsimmons et al, 2012). More specifically, CDM is based on the best available evidence relevant to the target disorder and begins with a comprehensive evaluation and screening for commonly associated conditions. On the basis of these initial evaluations, well-defined treatment priorities and goals, including prevention and maintenance, are established and documented in written care plans. These goals and priorities are developed in active collaboration with patient, close others, other members of the medical and psychosocial team, and community partners. As clinical experience and research in chronic care of the target disorder becomes more table 2

44.8%

20%

the prior year. While several studies have found shortened life expectancy following traumatic BI, in a tightly controlled study of mortality, Brown and colleagues (in press) found that the risk of death is no greater after traumatic BI than after other injuries when these two groups are equated for the severity of nonhead injuries. However, longevity is reduced for both brain and nonbrain injuries—suggesting that premature death may not be due to the BI itself but associated medical conditions. The evidence of increased risk after BI for medical and psychosocial morbidity is clear. Additionally, data from the TBI Model Systems National Database (www.tbindsc.org) reveals that almost a third of individuals demonstrate functional decline over a 15 year period following traumatic BI (Figure 1). On a more positive note almost 40-45% are stable over this period, and about a quarter improve. Factors that contribute to the direction and slope of this functional trajectory are not well understood at this time, and may include the presence or absence of medical co-morbidities, genetic predisposition, and quality and consistency of ongoing care. That functional status remains stable or even improves in the majority of cases offers hope that, with more consistent follow-up and services and with continuing research, the proportion of cases showing decline can be reduced and decline itself can be progressively delayed.

19.0%

17.3%

15.5%

18.6%

12.5%

10.8%

8.7%

10.3%

Year 2 vs. Year 1 (N=4,986)

Year 5 vs. Year 2 (N=2,867)

Year 10 vs. Year 5 (N=796)

Year 15 vs. Year 10 (N=194)

WHO: General Principles of Good Chronic Care

1. Develop a treatment partnership with your patient 2. Focus on the patient’s concerns and priorities 3. Use the 5 A’s: Assess, Advise, Agree, Assist, & Arrange 4. Support patient self-management 5. Organize proactive follow-up 6. Involve “expert patients,” peer educators and support staff in your health facility 7. Link the patient to community-based resources & support 8. Use written information—registers, treatment plan, treatment cards, written information for patients—document, monitor and remind 9. Work as a clinical team 10. Assure continuity of care BRAIN INJURY PROFESSIONAL

available, detailed protocols for lifelong management can be disseminated in the field. The condition may be stratified by severity or other features that link to more specific interventions. Such protocols include stepped care plans that prescribe progressively more intensive interventions to more aggressively address the emergence or worsening of medical and psychosocial co-morbidities or functional decline. Most importantly, an active and defined follow-up schedule is established with regular re-evaluations and modification of the care plan as appropriate. These elements are summarized in the World Health Organizationâ&#x20AC;&#x2122;s (WHO) General Principles of Good Chronic Care (WHO, 2004; Table 2). As mentioned previously, an important component of CDM is engaging patients in active self-management of their conditions with the support of close others as required. It is estimated that individuals with chronically disabling conditions spend an average of only 2 hours out of the 8,760 hours available each year with their physician. (see www.diabetesinitiative.org/documents/ Overview_3-08rev.pdf ). Thus, to create change we must look beyond the traditional health professional encounters and empower the person with CBI to be in charge of their care. Self-management approaches activate, empower, and build a sense of self-efficacy through teaching patients and their close others how to monitor and manage their conditions as well as when to seek professional help. Education and implementation in selfmanagement typically uses multiple modalities including individual and group sessions reinforced with written, web-based, and multi-media materials. As with CDM generally, self-management approaches can become more detailed and specific as research and experience in chronic care of a disorder develops to provide a basis for protocol-driven care.

and quality of life for individuals with BI. Prevention or delay of functional decline is also a reasonable expectation as is an associated increase in the proportion who experience functional improvement over time post-BI. The field is not yet at the point of developing highly detailed, evidence-based protocols for management and self-management in BI CDM. However, such evidence will become available through ongoing research and clinical experience. Appropriate funding for both clinical care and research in BI CDM is critical to successful implementation. While the initial implementation of a CDM approach in BI may initially increase health care costs for this previously neglected group of patients, these costs should be offset over time as the prevalence of costly rehospitalizations, medical and psychosocial co-morbidities, and productivity loss is reduced. Picture any individual with BI familiar to you and then imagine how his or her health and quality of life would be improved if this person had the opportunity simply to receive regular and routine follow-up with a written

10 BRAIN INJURY PROFESSIONAL

References

Brown A, Leibson C, Mandrekar J, Ransom J, Malec J. Longterm survival after traumatic brain injury: A population-based analysis. Journal of Head Trauma Rehabilitation in press. Coronado VG, McGuire LC, Faul M, Sugerman DE, Pearson WS. Traumatic brain injury epdiemiology and public health issues. In: Zasler ND, Katz DI, Zafonte RD (eds), Brain Injury Medicine (2nd ed), New York: DemosMedical, 2013. Fitzsimons M, Normand C, Varley J, Delanty N. Evidencebased models of care for people with epilepsy. Epilepsy & Behavior 2012;23:1-6. Hammond F, Donnelly K, Sasser H, Corrigan J, Bogner J, Weintraub A, Berry J, Kreutzer J. Illicit drug use over time following traumatic brain injury. Archives of Physical Medicine and Rehabilitation 2000;81:1260. Ishibe N, Wlordarczyk RC, Fulco C. Overview of the Institute of Medicineâ&#x20AC;&#x2122;s committee search strategy and review process for Gulf War and health: Long-term consequences of traumatic brain injury. Journal of Head Trauma Rehabilitation 2009;24:424-9. Marwitz JH, Cifu DX, Englander J, High WM, Jr. A multicenter analysis of rehospitalizations five years after brain injury. Journal of Head Trauma Rehabilitation 2001;16:307-17. Masel BE, DeWitt DS. Traumatic brain injury: a disease process, not an event. Journal of Neurotrauma 2010;27:1529-40. McKee AC, Cantu RC, Nowinski CJ, Hedley-Whyte ET, Gavett BE, Budson AE et al. Chronic traumatic encephalopathy in athletes: progressive tauopathy after repetitive head injury. Journal of Neuropathology & Experimental Neurology 2009;68:709-35. WHO. General Principles of Good Chronic Care 2004. Available from: http://www.who.int/hiv/pub/imai/generalprinciples082004.pdf.

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CDM for BI

The increased risk of medical comorbidities as well as psychosocial and functional decline after BI justifies the implementation of a CDM approach to lifelong care following these types of injuries. The WHO principles for good chronic care (Table 2) provide a roadmap for this far-reaching practice change with expected benefits in improved health

plan for ongoing care, education in self-management, and more intensive medical and psychosocial interventions as required.

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Brain Injury as a Chronic Condition: Implications for Public Policy From the 2012 Galveston Brain Injury Conference Public Policy Work Group: Susan H. Connors, John D. Corrigan, PhD (Group Facilitators); Mark J. Ashley, ScD; Ruth Brannon, MSPH, MA; Amy C. Colberg, MA; Wayne A. Gordon, PhD; Karen Gratten; John T. Hinton, DO, MPH; Peter W. Thomas, JD; Ronald C. Savage, EdD; Susan L. Vaughn, MEd.

Where We Are, Where We Should Be Chronic brain injury (CBI) can manifest in varying physical, communicative, psychosocial, cognitive and behavioral deficits at different points throughout an individual’s lifespan and result in debilitating disease and disability, poor quality of life and costly dependence on society. This article provides a framework for advancing public policy for CBI, which for many is the start of a chronic condition that is disease-causative and disease-accelerative. Currently, public policy for BI is a disjointed amalgamation of state and federal laws, programs, regulations and funding streams that provide limited support for immediate, episodic or long term medical care, rehabilitation, education, psychosocial intervention, research and community-based supports and services. Federal resources. More than a dozen major federal laws and programs1 affecting persons with CBI play a significant role in shaping available services. Annual federal appropriations 12 BRAIN INJURY PROFESSIONAL

for these measures are significant drivers of public policy. The key traumatic BI programs, not including stroke and other acquired BI include: • National Institutes of Health (NIH): $81 million annually for direct traumatic BI medical research and $219 million in trauma and childhood-related injury studies that may indirectly address CBI. (See National Institutes of Health Portfolio Online Reporting Tools: http://report.nih.gov/categorical_spending.aspx) • U.S. Department of Education National Institute on Disability and Rehabilitation Research (NIDRR): $10 million annually for 16 TBI model systems, a national data center, two rehabilitation research and training centers (RRTC) on traumatic BI and community integration, RRTCs for pediatrics and transition, as well as smaller research projects on BI. • U.S. Department of Defense (DoD): $2.7 billion was appropriated from 2007 to 2010 to the DoD for TBI and psychological health studies and service member care.2 DoD and the U.S. Department of Veterans Affairs recently announced an initiative to research TBI as a chronic issue.3 • Centers for Disease Control and Prevention: $6.1 million annually for injury surveillance, prevention, and public education.

•

Health Resources and Services Administration (HRSA): $9.76 million annually for the TBI Grant Program to improve service system access through grants to states and protection and advocacy organizations.

payer practices, and funding streams provide necessary medical, rehabilitation, psychosocial, and community-based services and supports as needed throughout the lifespan to restore functional capacity, minimize limitations on physical, psychological, communicative, social, educational, vocational and/or cognitive functioning, and maintain or prevent deterioration of functioning as a result of an illness, injury, disorder, or other health condition in keeping with evidence-based research. CBI public policy should support medical and psychosocial research, education, legal services and accommodation, availability of community services and supports and maximal independent living.

The Patient Protection and Affordable Care Act designates rehabilitative and habilitative services and devices as one of ten essential health benefits that must be included in all individual and small group health plans as of January 1, 2014. State policymakers are working now to select and enhance benchmark benefit plans that will define the scope of coverage to be provided by private health plans within Health Benefit Exchanges (also known as State Insurance Exchanges). State resources. Medicaid provides some funding for Getting from Here to There health and long term services for individuals with disabilities. Public awareness and education. To advance public policy, we BI “waivers” accounted for only 1.4 percent of total waiver must first build knowledge and consensus about CBI among expenditures of $35.1 billion spent for home and community- individuals with BI, family caregivers, professionals, educators, based waiver programs for all populations in 2009.4 Fewer researchers, legislators, and state and federal agency staff who than 20 states administer separate BI waivers, and these are responsible for administering BI programs and services. vary considerably in terms of level of care, services provided Early adopters can integrate CBI concepts, described in the and numbers served. States have substantial latitude in introductory article of this publication, into patient literature, administration of protocols and practices, program eligibility journal articles, conference lectures and training curricula. Initial acceptance of CBI within the field will lay the determinations, provider qualifications, scope and duration groundwork for acceptance of services, and reimbursement Research must be available to the general public by policymakers and others rates. States also receive federal (and CBI advocates) in a user-friendly format that in the health and disability communities. Success will funding – primarily through substantiates the validity and effectiveness of hinge on consistent messaging, block grants – for a range of services for individuals with medical treatment, rehabilitation, education, and including repetitive use of a other services and supports needed to maximize simple statement such as: disabilities, including vocational rehabilitation, community and maintain neurophysiological and psychosocial “For many, brain injury is not an services geared toward recovery and functional status following BI. event or an outcome; it is the start employment, rehabilitation of a chronic condition that is disease-causative and diseaseservices in a special education context, personal assistance accelerative.” services, mental health, substance abuse, special health care needs and aging, and independent living services. Additionally Such statements can be incorporated into grant applications, states regulate health care plans and workers’ compensation programs, participate in credentialing of Medicare providers, marketing collateral, guest lectures, awareness campaigns, and license health care professionals and settings. This creates position papers, testimony, and similar public forums. Human tremendous variability across states in access to the complete interest stories that reflect the chronicity of BI and the need for a coordinated chronic disease management approach can spectrum of care for persons with BI. Nearly half of the states have enacted legislation to generate be furnished to print and broadcast outlets. Social media are traumatic BI-specific funding, often from motor vehicle- ideal mechanisms to introduce CBI concepts into the broader related fees or fines. These revenues provide for some services public discourse. Ultimately, formal education is needed for physicians, unavailable through other state and federal programs. A few states use general revenues to pay for services. These funds nurses, allied health disciplines, public health professionals, fluctuate in annual allocations ranging from less than $1 case managers, educators, insurance professionals, vocational million to approximately $20 million, and programs vary by rehabilitation, and substance abuse counselors and others. Policies that require certification and continuing education in services provided, ages served, and eligibility requirements. Cost is a primary driver of access to care, and mechanisms CBI concepts for these workers and for staff of integrated health to address cost have made advocacy for CBI more complex. delivery models, such as, medical homes and accountable care This can be seen in the shift to patient-centered models of care, organizations, may be needed in the future. Research. Research is needed to accurately characterize the dismantling of the institutional bias in long term care, emphasis on evidence-based medicine, research, public opinion, and a definition, scope, and natural history of CBI and to establish range of proposals designed to slow or reverse the trajectory evidence for the parameters of a disease management approach. of health care costs (e.g., comparative effectiveness research or NIH established Common Data Elements for research and, in partnership with the DoD, has received $10 million to launch payment for health outcomes rather than procedures). The desired state for CBI policy is one in which state and the Federal Interagency Traumatic Brain Injury Research federal laws, regulations, programs, administrative practices, (FITBIR) database to serve as a central repository for new data BRAIN INJURY PROFESSIONAL

that allows valid comparison of results across studies. Adherence to Common Data Elements and surveillance of patient health and social outcomes is intended to enable creation of a national registry, yield prevalence data, demonstrate at-risk population segments, quantify costs to society, promote data sharing across research projects, and identify primary and secondary prevention opportunities. Research must be available to the general public (and CBI advocates) in a user-friendly format that substantiates the validity and effectiveness of medical treatment, rehabilitation, education, and other services and supports needed to maximize and maintain neurophysiological and psychosocial recovery and functional status following BI. Federal agency administrators can be urged to use available data to influence and coordinate basic and applied CBI research agendas through comment on Federal Register notices of proposed planning, grant awards and other rulemaking. Research should focus on identification of consequences of CBI, improvement of both the rate and extent of recovery, identification of mechanisms of cortical remodeling, neuroplasticity and neuroregeneration, characterization of therapeutic dose-response relationships, halting progressive neurodegenerative processes, psychosocial ramifications of CBI, and determination of effective methods of CBI disease management. Individual advocacy and systems change. Advocates can work to modify existing laws, expand current programs, and/or recommend new legislative and regulatory remedies grounded in principles of parity and non-discrimination as well as economic arguments that illustrate improved health outcomes, cost effectiveness, and benefits to society. Targets might include amending the TBI Act of 1996, the Individuals with Disabilities Education Act, and the Rehabilitation and Workforce Investment Act. A Project of National Significance via the Administration on Children and Families may be possible. Initiatives are underway at the state level to carry out provisions of the Affordable Care Act, including expanding Medicaid eligibility, home and community-based service options, Aging and Disability Resource Centers and establishing Health Benefit Exchanges. It is crucial to advocate for benefit language that supports comprehensive treatment for persons with catastrophic injuries and chronic conditions. Advocates can partner with other disability and health organizations working on these initiatives to ensure that individuals with BI are included. Many states are applying for and receiving grants to rebalance their long term services and supports for persons with disabilities and seniors in lieu of institutional care, and advocates can engage in these discussions. A growing number of states are now adopting mandatory enrollment in Medicaid managed care plans for children with disabilities, children with special health care needs, and/or seniors and adults with disabilities. Most states have adopted certain “carve outs” (i.e., acute care, behavioral health, substance abuse treatment, dental care), but some states are now pursuing managed-care plans for behavioral health services and long term care, services and supports. Advocates can press states to obtain public input on the importance of appropriately addressing CBI in these contexts. Solutions governing payer practices include the 14 BRAIN INJURY PROFESSIONAL

disallowance of proprietary treatment and payer guidelines, prohibitions on stinting-on-care by providers and payers, development of comprehensive BI treatment guidelines, truth and transparency-in-insurance legislation, and explicit CMS recognition of BI as a chronic condition that is disease-causative and disease-accelerative. Finally, advocates can avail themselves to courts to help facilitate repatriation of citizens who reside in inappropriate institutional placements outside the state or in institutional settings that are not of one’s choice.

Summary & Next Steps Our goal is to foster public policy that assists individuals with CBI to access age-appropriate treatment including adequate medical and rehabilitative treatment, ongoing symptom management, and the array of supporting interventions including legal, educational and psychosocial services to integrate the individuals with CBI into community life and achieve a level of wellness that prevents secondary injury, minimizes functional deterioration, reduces re-hospitalization and avoids inappropriate institutional placement. We must pursue policies that support: 1. individuals with BI to live a productive life in the most integrated setting of their choosing; 2. evidenced-based practices across health care, disability, education and payer systems; 3. funding and payment policies throughout the spectrum of care for medical and rehabilitative treatment and services/supports addressing needs over the lifespan; 4. training/education for physicians, allied health, and education professionals; legislators; and relevant disability and human services professionals to recognize BI including CBI, and to address its deleterious effects; and 5. research across all domains of service delivery (i.e., primary/secondary prevention, medical and rehabilitative treatment, education, and community living). Achieving the desired state in BI policy will be a challenge. Ultimately it will require strategic thinking, a unified voice across the BI community, powerful champions, alignment with groups outside the field, public relations, and a healthy dose of good luck. References 1.

Federal laws affecting individuals with BI include, but are not limited to, the Americans with Disabilities Act (ADA), Developmental Disabilities Act, Employee Retirement Income Security Act (ERISA), Individuals with Disabilities Education Act (IDEA), National Defense Authorization Acts (NDAAs) of 2008 and 2012, Patient Protection and Affordable Care Act (ACA), Public Health Act, Rehabilitation Act, Social Security Act (including Medicare, Medicaid, Children’s Health Insurance, and Social Security Disability Income Programs), Traumatic Brain Injury (TBI) Act, and numerous federal laws involving Veteran’s health care, labor and transportation safety. Coordinating Authority Needed for Psychological Health and Traumatic Brain Injury Activities, General Accounting Office, Report to the Chairman and Ranking Member, Committee on Armed Services, U.S. House of Representatives, Jan. 27, 2012 (GAO-12-154). Program Announcement, Psychological Health and Traumatic Brain Injury Research Program (PH/TBI RP), Chronic Effects of Neurotrauma Consortium (CENC) Award, solicited by the Assistant Secretary of Defense for Health Affairs, Defense Health Program (DHP), in collaboration with the Department of Veterans Affairs Office of Research and Development, Funding Opportunity Number: W81XWH-12-PHTBI-CENC, Catalog of Federal Domestic Assistance Number: 12.420, Sept. 10, 2012. Medicaid1915(c) Waiver Expenditures: 2011 Update, Steve Eiken, Brian Burwell, Lisa Gold and Kate Sredl, Thomson Reuters Oct. 3, 2011.

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Brain Injury as a Chronic Condition:

Implications for Education From the 2012 Galveston Brain Injury Conference Education Work Group: Harvey E. Jacobs, PhD, CLCP (Group Facilitator); Beatriz Colon Abreu, PhD, OTR; Roberta DePompei, PhD; Timothy R. Elliott, PhD, ABPP; Gerard E. Francisco, MD; Lynn H. Gerber, MD; Richard A. Huang, MD; Kurt A. Mossberg, PhD, PT.

Where We Are, Where We Should Be

Education is a dynamic process involving the coordination of students, teachers, information, and timely dissemination. Additional effort is required when attempting to alter prevailing opinions and conventional wisdom, such as changing commonly regarded perceptions of brain injury (BI) as an event to the concept of a chronic condition. This effort is further complicated since basic concepts regarding BI are still incompletely understood within professional fields and by the general public; i.e., many misconceptions prevail. This includes primary issues such as the definition, etiology, treatment/service options, and likely courses of BI. As a result, a multifocal effort is required that identifies those likely to want and benefit from the information, key dissemination groups, available materials, gaps requiring new information, opportunities to influence established training and dissemination venues, and key themes across constituencies. Special consideration is required in presenting the concept of BI as a chronic condition to help people understand that chronic brain injury (CBI) includes medical challenges as well as social, psychological, vocational, educational, community, cultural, life span, legal and judicial issues. Accordingly, the means to manage life with BI involves multiple systems and perspectives similar to many other chronic disease processes. Thus, stakeholders need information to help balance the negative implications of having such a condition with proactive coping strategies that promote capacity and life quality.

Getting From Here to There

BI involves a multitude of stakeholders. Individuals with BI are one obvious group, but so are family members, friends and others who have historically been involved in that person’s life; people providing services; funders, legislative and advocacy groups who promulgate policy; researchers, teachers, and trainers; product and curricular developers; media groups who disseminate information 16 BRAIN INJURY PROFESSIONAL

and the general public. Educating these different groups requires coordinated yet divergent efforts according to the roles, resources and accessibility of different participants/stakeholders. Seemingly, obvious approaches to education may not always be effective or practical. For example, students would appear to offer a captive audience. Yet they are often overwhelmed with the sheer amount of material they are already expected to master. Consequently it is difficult to add additional material to densely packed curricula. Practicing professionals are synonymous with overextended time commitments, making continuing education difficult enough— let alone transformational training, such as, the reconceptualization of BI as a chronic condition. Other groups offer their own unique challenges, constraints, and opportunities for outreach. For purposes of education strategy, it may be possible to classify diverse participants and stakeholders into the following five categories, each of whom may require their own unique approach. Pre-service: People involved in their initial training within a given field or position. Revising curricula and training programs can take years and additional material on BI is not always a priority in many medical, educational or allied health training programs. One possible means to influence such training is to become involved in the InterProfessional Educational Collaborative (IPEC) movement. IPEC has been developing nationally as a means for training students in multiple professions to be educated both didactically and clinically as teams. Most experts believe that in order to deliver high-quality, safe, and efficient care, and meet the public’s increasingly complex health care needs, the educational experience must shift from one in which health profession students are educated within “disciplinary specific silos” to one that fosters collaboration, communication, and a transdisciplinary team approach to providing care. Team-based care, which frequently includes patients and their caregivers, is likely to be the “new normal” for care and hence, education should include how best to function as a team member. In 2010, the IPEC developed core competencies to advance substantive interprofessional learning experiences and help prepare future clinicians for team-based care. With this approach, healthrelated colleges and university programs create teams, document

cases, and develop various methods to train students. Opportunities exist within this infrastructure to develop training cases based on BI. This method of infusing information to students is the educational wave of the future and holds promise for developing a cadre of students and professionals who understand the complexity of BI from a team perspective. In medical and other health-related discipline schools, instruction in cultural competency that includes responsiveness and sensitivity to the needs or persons with disabilities is included in the curriculum. Without having to significantly revise the curricular content or method of delivery, existing curricula can emphasize topics in disability management for persons with BI. Similar opportunities exist in schools of regular and special education. In-service: Training of practicing professionals/people in the field. Established practitioners have to be reached in several different formats. Most disciplines have statutory expectations for continuing education (CE) and a wide range of training venues are already available to deliver these services. Existing CE providers, especially those providing on-site seminars, webinars, conferences and other didactic training experiences, are generally receptive to new and timely information. The information disseminated must be validated both professionally and scientifically. A concerted effort towards publishing high quality research, reviews and position papers in both peerreviewed and professionally circulated journals, as well as in books, can aid this process though publication timelines can be lengthy. Acknowledging the limited time available for healthcare professionals, venues for knowledge dissemination need to provide accessible information frequently to reinforce and articulate this information. Short pieces in periodicals, mailers, and on-line services can aid this effort. Providing relevant information to professional organizations and professionally-oriented peer support networks via list-serves and other available venues can also aid this process of information dissemination and translation into practice. Changing practice requires that we go beyond solely disseminating information. Practitioners will practice the way they were trained until convinced otherwise and then the change is incorporated into daily care. The information often must be translated to be ready for implementation in order to be carried into practice. For example, the development of guidelines, protocols, electronic applications, and educational handouts for patients may help the practitioner make shifts in thinking and practice. We need to go beyond the education of those who are already thinking about and treating people with BI. In order to care for BI as a chronic condition we will need to educate more rehabilitation providers and reach out to primary care providers and midlevel providers and to case managers, General public/society. There are broad arrays of venues for the general public to access information about BI. The internet is one frequently accessed domain that is populated by advocacy organizations, service providers, professional organizations, military and veteransâ&#x20AC;&#x2122; organizations, government supported sites, academic organizations, first-hand accounts, chat rooms, list servers, news links, as well as attorney and other marketing sites. Other media outlets, such as, television, radio, newspapers, magazines, and books, are also readily available. The overall accuracy and quality of this information appears to be improving. However, it still may be important to help users interpret the quality, timeliness and accessibility of available information, especially if they are new to the field, or seeking information on complex or debatable topics.

Consumers: People with brain injury and people in their support circles. In addition to information available to the general public, consumers may also receive information from providers and service organizations that is specific to their current and future needs. Providing practitioners with relevant materials that they can distribute to their clients/patients can help and provides the dual benefit of educating the consumer while concurrently teaching or reminding the provider. Accessibility of knowledge is critical as a variety of cognitive and perceptual problems may impair comprehension. Some information may be at an academic or professional level that is too difficult to understand. This is a frequent complaint of consumers and adaptation of such information is critical. Finally, consumers need tools to determine the authenticity and relevance of the information they secure, especially when it relates to treatment or service decisions. In some cases, problems can develop when accurate information is misunderstood. In other cases, inaccurate information can place recipients at risk. Policy/Funding: People and groups involved in policy, funding or advocating for service provision and models. Groups in this category may include public, private, collaborative and hybrid organizations with a variety of agendas. Some may be involved in developing public policy ranging from local to national levels. Others may be advocating for commensurate funding or categorization of funding â&#x20AC;&#x201C; such as, means tests for financial or service qualification. Funding sources such as insurance companies may seek criteria for exclusionary or inclusionary procedures; whereas, legal and advocacy groups may seek information for promoting access to care. Other groups may focus on research agendas, public education or other issues. Regardless of the specific focus, most groups in this category require two types of information: (1) succinct information to form and disseminate the key point of focus, and (2) more indepth references and annotated material to substantiate the groupâ&#x20AC;&#x2122;s focus and basis for identified needs and recommendations. The National Injury and Violence Prevention and Control Center at the Centers for Disease Control has an explicit public health mission and now features traumatic BI as one of its three research domains. Its agenda includes identifying the services needs and barriers that restrict access for persons with BI, and identifying the programs that effectively reduce disability and prevent post-injury symptoms and long term effects. This agenda, commensurate with a chronic disease model of BI, exemplifies the kind of community, public health approach necessary to facilitate community reintegration and promote health and well-being following BI.

Summary and Next Steps

There is already a significant amount of information regarding BI. However, additional work is required to incorporate new information from scientific, clinical, philosophical and advocacy perspectives on the implications of BI as a chronic condition. Much like the rungs of a ladder, this may best be approached in four distinct steps though activities in each of these steps can occur concurrently as information becomes available. 1. optimize existing dissemination and knowledge translation materials; 2. adapt conceptually relevant information/material that may not be contextually correct to a CBI model; 3. fill in knowledge gaps where we know we have accurate information but need to create the material; 4. create systems to effectively capture/create new material as the CBI model evolves in response to societal changes. BRAIN INJURY PROFESSIONAL

Brain Injury as a Chronic Condition: Implications for Medical Practice From the 2012 Galveston Brain Injury Conference Medical Work Group: Kathleen Bell, MD (Group Facilitator); Gina Armstrong, MD; Julia Fidler Dixon, MS; Stephen Flanagan, MD; Cindy Ivanhoe, MD; Brent E. Masel, MD; Nancy L. Swigonski, MD, MPH; Dennis Zgaljardic, PhD.

Where We Are, Where We Should Be Medical management of brain injury (BI) over the years has reflected the larger practice of medicine with both medical care and rehabilitation being delivered episodically and often in response to patient or family crises or worsening symptoms. The predominant focus of care has been on the acute and immediate subacute stages of recovery from BI. Many of the United States do not include chronic BI as a condition that might qualify for Medicaid funding of rehabilitation services. (Imagine the equivalent situation of patients with “chronic” diabetes or hypertension being denied therapy for their ongoing disorders.) However, we know from clinical experience and increasingly from observational research that those with BI may continue to struggle with fatigue, depression, sleep disorders, pain, muscle weakness, mobility challenges and are more likely to struggle with chronic health disorders stemming from limited lifestyle options as well as limited income, socialization, and neurogenic lack of motivation or compliance. Equally concerning is the elevated potential for developing dementia or Parkinsonism. Ideally, a medical care program for the long term care of persons with BI would emphasize the management of chronic 18 BRAIN INJURY PROFESSIONAL

sequelae, rehabilitation, prevention of symptom exacerbations and associated conditions, and maintenance of health. In other words, health care providers would emphasize surveillance for known sequelae and complications of BI with an eye toward prevention and maintenance of high levels of health and function.

Getting from Here to There Advancing health care for persons with BI past the initial lifepreserving surgical and acute rehabilitation efforts will require a change in the definition of BI from one which emphasizes BI as an EVENT to one which acknowledges the effect of this event on multiple physiological, psychological, and societal structures resulting in long term alterations to those same structures. The expectations of health care providers and patients must be realigned from an often unattainable focus on cure to a focus on long term (and possibly) lifelong monitoring with early identification and treatment of disorders and “immunization” against loss of health and function. To attain this goal, we will need to educate providers, provide for supportive infrastructure, and build capacity for collaboration among providers. A stepped approach to achieving these goals would include: Identification of the likely specific and general health issues that will confront the person with BI over a lifetime. An obstacle to this basic first step is a lack of validated assessment measures for BI. For instance, we still lack an impairment

assessment for BI, let alone more advanced measures of activities and participation. There are many symptoms and associated disorders that might be included, such as, depression/anxiety, headache, irritability/lability, late onset psychiatric disorders, spasticity and joint contracture, visual disorders, poor balance and coordination, altered cardiovascular responses, endocrine disorders, hyper/hyposexual responsiveness, fatigue, acne, and cognitive impairment (memory, executive function, speed of processing), among many other problems encountered with chronic BI. Development of treatment guidelines for BI specific health issues and likely co-occurring disorders. These guidelines would preferably be based on the best available evidence including recommendations supported by consensus as the body of scientific literature on aging with a BI develops. Currently, many treatments for associated disorders are derived from other populations and efficacy for patients with BI is not known. One challenge of creating guidelines for treatment is the need for regular updating and the identification of a qualified health care provider group to do so. Development of rehabilitation treatment guidelines for chronic BI. Guiding principles for the initiation and duration of rehabilitation interventions are necessary. For instance, for persons with cognitive impairment, a review of cognitive strategies might be indicated at changes of employment or levels of daily supervision. Interventions might be applied individually or combined at different surveillance points. In formulating these recommendations, attention to decreasing costs by utilizing group or electronic education or treatments and community-based programs should be considered. Development of a surveillance and screening timeline. An additional aspect of guideline development would be the determination of a timeline on which surveillance activities would occur (akin, for example, to Pap smears, mammography, colonoscopy). This would provide prospective and expectant attention to and care for physical and psychiatric issues at standardized assessment intervals. Both BI specific disorders and general health maintenance should be part of suggested timelines. Monitoring should occur for functional declines (e.g., increased number of falls, limb weakness, changes in cognition), as well as for health and wellness benchmarks. Disorders that might be expected to occur with higher prevalence in those with moderate to severe BI include: dementia, obesity, poor fitness and inactivity, “accelerated aging,” osteoarthritis, depression, substance abuse, Parkinsonism, and recurrent trauma. It will be equally important to avoid over-treatment and over-medicalization of “normal” aging which might result in unintended adverse events. Surveillance checklists such as those proposed would provide the foundation for clinical BI registries to provide large scale observational data to evaluate the appropriateness of existing guidelines and to identify unexpected outcomes (i.e., a practice-based evidence approach to analysis). Definition of transition protocols and hand-offs between health care teams. Checklists and communication for transitions and health care system hand-offs must be operationalized. Transitions may include changes in health care providers, systems of care, social and educational systems, or life stage succession. A common transition point occurs with completion of K-12 services; often, follow-up is lost at this time

which is crucial for adult social success. Case managers or lay health coaches could be crucial personnel for managing aging transitions, information and guideline transfers, and provider education. Shared care and exploration of collaborative care models will be necessary for successful implementation since there will never be enough physiatrists or rehabilitative neurologists to successfully implement surveillance care. Innovative economic and practice models should be considered. Successful “outsourcing” of rehabilitation interventions to primary care venues or lay providers would require adequate linking to rehabilitation specialists. Steps that will be needed to accomplish this goal will include: • stratification models to identify levels of care/health monitoring needed by patients (i.e., which patients are independent in health care follow-up and which might benefit from being teamed with care managers) • partnerships of specialists with primary care providers, • innovative economic and practice models (medical home models, chronic care models, shared care model, prospective surveillance model), • information exchange, • increased use of mid-level providers in rehabilitation settings, • integration of environmental and social factors into BI health maintenance, • telemedicine, and • infrastructure for collaboration. Development of appropriate tools for encouraging “compliance” or adherence to health measures for BI survivors/ supports/providers. Implementation of guideline use and collaborative models of care will require the development of appropriate tools for optimizing “compliance” or adherence to health measures for BI survivors, social supports, and providers. Success in this health care model has to account for the cognitive and behavioral challenges presented in BI with improved educational and health participation models. Examples include: • use of shared decision making (such as a patient-centered care model), • electronic reminders, shared calendars, cuing from smart phones and other interactive devices, • access to providers via telemedicine systems, • development of environmental monitors that provide feedback cues (think of insulin pumps – now imagine anger management sensors with immediate feedback loops to the patient), • establishment of lay health care partners or peer health care circles, • identification of appropriate educational approaches for enhancing compliance in those with probable cognitive impairment, • education of individuals with BI and their community supports (e.g., family members) about the role of long term follow up to avoid decline or illness. Development of performance metrics and benchmarks for guideline implementation and interventions. Measures should be chosen or developed to ensure consistency in approaches BRAIN INJURY PROFESSIONAL

to monitoring and intervening. Ideally, a pilot system for implementation of surveillance guidelines and performance measures should be implemented using implementation and/ or quality improvement science methods. Adaptation of EMR/documentation to facilitate collaborative care. To support collaborative care and information transfer between providers, cross talk between electronic medical record (EMR) systems and other forms of documentation must be implemented or patient direct access to medical records facilitated. Expand health support system to community level (including social and employment options to enhance wellness). Social opportunities and employment options are crucial to maintaining cognitive, physical, and spiritual health.

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Summary and Next Steps Health care and wellness can be improved with an anticipatory monitoring and surveillance program utilizing innovative care models, guidelines, and timelines. However, considerable effort will be necessary to develop sufficient data regarding aging with a BI, adaptation of guidelines to BI, and utilizing appropriate educational supports to engage the person with chronic BI. This effort should include family or other individual personal caregivers to provide structure and assistance to enhance health and well-being. In order to accomplish this, we propose a pilot using implementation and/or quality improvement science methods. Potential next steps are numerous and include: • identification of physicians and other providers to begin the guideline development or selection process, • a review of the current literature and clinical programs for models of care and existing guidelines and measures that might be adopted/adapted, • professional consensus conferences for guideline development, • field review by consumers and other stakeholders, • pilot implementation with grant funding (innovation grant) as three year study, • plan for implementation of findings with website and open source material and training seminars, • design for maintenance of certification projects and other “high-stakes” support to encourage adoption of the model, • collaboration with state Medicaid systems, Medicare, and insurers. Funding support for the development of treatment guidelines, protocols, and a timeline will be crucial. Sources for this might include governmental and non-governmental grants, unrestricted grant funds from industry sources, and philanthropic foundations. Timelines for recommended rehabilitation interventions can be developed from a combination of systematic reviews and the implementation of a practice-based evidence model possibly from pre-existing scientific collaborative groups (e.g., TBI Model Systems). At each successive step, guidelines/protocols should be published and submitted for evaluation to entities, such as, the National Quality Forum and Guidelines.gov with sign-on by professional societies and specialty organizations. 20 BRAIN INJURY PROFESSIONAL

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Brain Injury as a Chronic Condition:

Implications for Research From the 2012 Galveston Brain Injury Conference Research Work Group: Mark Sherer, PhD (Group Facilitator); Sureyya Dikmen, PhD; Flora Hammond, MD; Jacob Kean, PhD; Kenneth Ottenbacher, PhD; Elizabeth Protas, PhD; Gale Whiteneck, PhD.

Where We Are, Where We Should Be Research on brain injury (BI) has been shaped by a perception that BI is a discrete event that happens in a narrow timeframe and is followed by an improving course for those who survive their injuries. This view has been informed by large multicenter observation studies that have shown substantial progress on global outcomes for most persons with BI (e.g., Murray, Teasdale, Braakman et al., 1999). While a few studies (e.g., Millis, Rosenthal, Novack et al., 2001) have shown that some persons with BI show cognitive and functional decline over time, the perception of most BI clinicians and researchers is that persons with moderate and severe BI improve over a timeframe of several months, eventually reaching a relatively steady state of cognitive ability and functional status (Sherer, Madison, Hannay, 2000). Consequently, there has been little investigation of factors that might predict late decline after BI. The conduct of such research is complicated by the inadequate capture of late functional status and comorbidities that would be needed to detect late decline in a subset of patients. Clinical trials of interventions have generally focused on the early post-injury period. A quick survey of 20 BI medication trials drawn from the ClinicalTrials.gov website revealed that a substantial majority were restricted to persons in the early hours post-injury. A few extended to a few months post-injury and fewer still were open to persons with BI regardless of time post22 BRAIN INJURY PROFESSIONAL

injury. A survey of 20 cognitive rehabilitation trials from the same website revealed that a substantial minority of these were restricted to persons within the first 3 years post-injury despite the lack of any empirical evidence that cognitive rehabilitation interventions are only effective for a limited time post-BI. While it is possible that these limited samples may not represent the universe of intervention trials for BI, review of these 40 studies suggests that many intervention trials are focused on the early hours, days, and weeks post-injury. This heavy focus on the relatively early post-injury period likely reflects that view that BI is a discrete event from which injured persons recover over a period of months eventually reaching a relatively stable plateau in cognitive and behavioral functioning. In order to conduct programmatic research on BI as a chronic condition, a number of infrastructure, attitudinal, and funding priority changes will be necessary. Researchers will need access to large data sets that support more sophisticated research on long term consequences of BI and identification of risk factors for decline in function or development of associated medical or psychosocial complications. Researchers will have to shift from their view of BI as a discrete event to increased interest in trials of interventions with persons who are several months or years post-injury. Funding agencies will have to prioritize projects that have extended follow-up periods or that capitalize on existing long term databases.

Getting from Here to There The Research Workgroup identified a number of foundational constructs that could guide programmatic research on BI as a chronic condition. These included prevention, change in incentives, coordination of care, and selection.

Prevention. In this context, prevention refers to minimizing adverse long term consequences of BI and minimizing the impact of these long term consequences on functional status, participation, and quality of life. Prevention efforts generally entail early interventions including education that prepare persons with injury to be more resilient to factors that might cause late complications or functional decline. As an example, there is some evidence that persons with BI have a greater incidence of sleep disturbance than non-injured persons. A preventative educational intervention might include information about diet, exercise, consistency of schedule, and other factors that might decrease the likelihood of later development of sleep disturbance. Effective prevention depends on understanding the incidence of the injury or illness that one wishes to prevent as well as knowledge of factors associated with onset of the injury or illness. Due to the limited emphasis on long term complications in previous BI research, knowledge of the incidence and causes of co-morbidities of chronic BI is lacking. In order to move forward, investigators will need access to datasets reporting on large groups of persons with BI that include the full range of key risk factors, such as, age at injury, sex, pre-injury physical health, pre-injury psychological health, social support, injury severity, and genetic parameters. While some long term datasets, such as, the National Institute on Disability and Rehabilitation Research (NIDRR) TBI Model Systems National Database exist, longitudinal components of this dataset have largely been focused on overall functional status, community participation, and quality of life. Limited data on the occurrence of seizures, re-hospitalizations, and psychiatric treatment are included in the database but more general followup queries on health conditions and overall health status have only recently been added. It is also important to have an adequate comparison group in order to detect differences with normal aging. The creation of large datasets that can be used to track late complications of BI and to identify subpopulations that are at particular risk would be facilitated by standards for longitudinal follow-up for large BI studies as well as use of the same measures across studies. The National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements initiative is a step in this direction. However, the Common Data Elements recommendations do not currently include a broad assessment of possible late adverse events that could be associated with the long term post-BI period. We recommend reconsideration of the Common Data Elements recommendations to include additional data elements to facilitate study of late medical complications after BI. Change in incentives. Payers for healthcare services have been primarily focused on initial management in the acute care setting and inpatient rehabilitation services if needed. Little attention has been given to long term costs associated with BI that occur due to late complications or deterioration in functioning. Similarly, research funding agencies have given little attention to funding trials of interventions to prevent late complications or to manage these complications when they occur. The first step in creating incentives for healthcare payers and funders of research to focus on long term consequences of BI is high quality research documenting late morbidity in persons with BI as well as determination of factors that predispose persons with injury to sustain these late medical complications. Since late complications of BI may be numerous and risk factors for various complications may differ substantially between individuals, very large datasets will be needed to support this research. Research that documents the

incidence of late complications, their impact on cost of care, and risk factors for their development will set the stage for a new emphasis on preventing and treating these complications. A key element in such research would be early determination of subgroups of injured persons who have increased risks for general categories of late complications. For example, there may be genetic markers that could identify persons at risk for late cognitive decline or there may be early behavioral indicators that are associated with increased risk of eventual development of depression or anxiety disorders. Payers would be incentivized to reduce their long term exposure by preventing complications and/or effectively managing them when they occur. Research funding agencies would be incentivized to provide funding to support interventions that improve long term outcomes for injured persons. Coordination of care. Current models of care for persons with BI are overly dependent on early care by highly specialized providers with eventual transfer of care to providers with little or no specialized training in BI. There was broad agreement within the Research Workgroup that it is unlikely that persons with BI can receive all care from specialized BI providers across their life spans or that all general providers can be efficiently trained to a higher level of expertise in BI. Given this reality, a possible route to improved care across the life span for persons with BI would be increased coordination of care between specialized providers and general providers. One attractive means of enhancing coordination of care is individualized case management. There are existing models of extended case management that could be applied to persons with BI. Some models such as case management for persons with injuries covered by Worker Compensation benefits have already been applied in BI. Other models can be drawn from mental health, diabetes, and palliative care. BI researchers should draw from prior investigations of the clinical and cost effectiveness of case management strategies for other clinical populations. Investigations of the cost effectiveness of case management in reducing the incidence and impact of long term adverse consequences of BI will require large longitudinal datasets. Design alternatives to randomized controlled trials must be considered as it will be difficult to plausibly achieve equipoise in a trial comparing coordination of care using extended case management to a control condition with no case management services. Selection. There are multiple issues that require the selection of limited options from many. Selection from many research strategies and options is required whether investigations are observational with a focus on determining the range and incidence of long term adverse consequences of BI, risk factors for these consequences, or in trials intended to determine the effectiveness of a single intervention or range of interventions. These include: (1) patient cohorts (e.g., mild vs. moderate and severe), (2) interventions (specific interventions for specific conditions or general health management interventions targeting overall health status), (3) outcomes (prevention or mitigation of a particular clinical condition as compared to overall health status), and (4) risk factors (selection from a myriad of options, such as, demographics, genetics, injury characteristics, pre-injury status, social support network, access to services). Given the current state of knowledge of the long term impact of BI, there is a clear need for longitudinal observational studies but, given the urgency of the need, intervention trials cannot wait years for these longitudinal studies to be completed. Rather intervention trials should address long term consequences for which there is substantial current knowlBRAIN INJURY PROFESSIONAL

edge. Intervention trials can also examine the effectiveness of educational interventions targeting overall health status. There may be natural experiments that can be conducted by comparing differences in systems of care that exist between states or regions. Databases supporting such natural experiments may be available from state Departments of Rehabilitative Services, Medicaid, or large managed care organizations. While health conditions, risk factors, demographics, and other key issues for Veterans and Military Service Members may differ somewhat from civilian groups, these groups may also be appropriate initial targets. The Veterans Administration (VA) and the Department of Defense (DoD) have long term commitments to veterans and military service members and are likely to have public policy support for large efforts geared towards improving long term health status for these groups. Ideally, VA and DoD resources would support research that includes civilians, particularly for health conditions that are likely be common between civilian and military populations and are likely to respond similarly to interventions.

Summary and Next Steps Conceptualization of BI as a chronic condition has multiple implications for changes in current approaches to BI research. In many ways, these implications point toward a more challenging, complex, and expensive research agenda given the need for large longitudinal datasets that capture a wide range of data elements. Intervention trials will need to include multiple centers in order to identify subgroups of adequate size with risk factors for development of specific health conditions. Given the resources needed to fund these efforts, the key next step is an advocacy campaign focused on governmental agencies and private foundations with the resources and interest needed to fund these efforts. References

Millis SR, Rosenthal M, Novack TA, Sherer M, Nick TG, Kreutzer JS, High Jr WM, Ricker JH. Long-term neuropsychological outcome after traumatic brain injury. Journal of Head Trauma Rehabilitation 2001;16:343-355. Murray GD, Teasdale GM, Braakman R, Cohadon F, Dearden M, Iannotti F, Karimi A, Lapierre F, Maas A, Ohman J, Persson L, Servadei F, Stocchetti N, Trojanowski T, Unterberg A. The European Brain Injury Consortium Survey of head injuries. Acta Neurochir (Wien) 1999;141:223-236. Sherer M, Madison CF, Hannay HJ. A review of outcome after moderate and severe closed head injury and an introduction to life care planning. Journal of Head Trauma Rehabilitation 2000;15:767-82.

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Brain Injury as a Chronic Condition:

Implications for Psychosocial Interventions

From the 2012 Galveston Brain Injury Conference Psychosocial Work Group: Lance Trexler, PhD (Group Facilitator); D’Andrea Anders, MD; Cynthia Braden, MA, CCC; Margaret Brown, PhD; Charles Christensen, EdD; Keith Cicerone, PhD; James Malec, PhD; Angelle Sander PhD; and Gary Seale, PhD.

Where We Are, Where We Should Be

While the temporal course of recovery after moderate to severe brain injury (BI) is lengthy (i.e., months to years), it has been suggested that the greatest degree of recovery occurs within the first year following injury. Physical and cognitive recovery during this period can be quite dramatic. However, psychosocial sequelae also persist and can become a long term problem for a significant number of individuals living with BI. Some researchers suggest that psychosocial problems after BI may be the greatest challenge for providers of rehabilitation services, and a primary barrier to successful community re-integration (Morton & Wehman, 1995). For example, it has been estimated that as many as 50% of persons with moderate to severe BI report clinically significant levels of anxiety and depression within the first year of injury (Jorge et al., 2004). A large number of individuals with BI develop maladaptive coping responses that involve denial, isolation/withdrawal, or substance use/abuse. Reports of hopelessness and suicidal ideation, as well as suicide attempts post-injury are high among persons with mild to severe BI (Simpson & Tate, 2007; Tsaousides et al., 2011). Emotional 26 BRAIN INJURY PROFESSIONAL

problems and maladaptive coping following BI can be particularly disabling as BI affects young adults between the ages of 1524 when developmental tasks involve gaining independence in a number of life domains including living, work, leisure, and relationships. Children who sustain BI are likewise at risk for long term psychosocial problems as their intellectual, physical, and emotional development depends upon critical interactions within home and community environments (eg., school, church) which may be limited or negatively impacted by a BI (Gerring & Wade, 2012). Unfortunately the current BI service delivery model treats BI as an event rather than a chronic condition that can affect psychosocial functioning long term. The current model capitalizes on spontaneous neurological recovery, providing the majority of acute and post-acute interventions within the first year of injury. The model, therefore, is not designed to provide interventions beyond the early recovery period and certainly not across the life span. Additionally the current BI service delivery model is reactive—not proactive—failing to adequately anticipate needs that might emerge developmentally or that might arise following an individual’s exit from the continuum of care. Given the length and complexity of recovery, treatment interventions should be individually designed and staged throughout the recovery process and beyond as recovery overlaps with natural development and aging. Rather than treating BI as a single event, a more reasonable approach to rehabilitation might

based system of classifying persons with BI on the basis of predictors of psychosocial outcomes would allow for matching to appropriate interventions at different time points post-injury. This classification system should include both the problems and needs of persons with BI and environmental facilitators and barriers to mental health and participation outcomes. Once we have a prognostic system for classifying persons with BI with regard to their problems/needs, as well as their environmental supports and barriers, we will have the knowledge necessary to direct them to specific interventions to improve outcomes. The effectiveness of specific interventions for specific clusters of symptoms and environmental characteristics could then be empirically investigated. The linking of people with specific clusters of symptoms and environmental characteristics to specific interventions also deGetting from Here to There pends on having a range of interventions available. That is, a While interventions should be individually designed, they should taxonomy of psychosocial interventions is also needed. This taxbe based on sound empirical findings. In order to develop a com- onomy should be based on empirical evidence for effectiveness prehensive system of directing people to needed psychosocial in- of specific interventions but should also include expert consensus terventions, two main bodies of knowledge are needed: 1) knowl- on the types of treatments that would best address certain probedge of the problems experienced by persons with BI, including lems and needs. Again, the effectiveness of specific interventions adults and children, over the entire course of recovery and living for treating certain clusters of problems and characteristics will with a BI; and 2) knowledge of the types of interventions that need to be empirically demonstrated. While evidence exists for would most likely meet the needs of persons with a particular set the effectiveness of some psychosocial interventions (e.g., treatof problems at different stages in the recovery process. ment of depression, vocational intervention), it is not entirely There is already a good start toward reaching the first goal known which subgroups of people with BI are most likely to of knowledge of the problems of persons with BI. There is a benefit from which interventions (e.g., people of certain age, wealth of literature demonstrating the types of emotional and certain functional ability, certain environmental supports). This behavioral difficulties experienced after BI, as well as problems evidence is needed in order to develop a comprehensive system in achieving full participation in of services to be available for perEven after we have a system for classifying people sons with BI. society. However, the empirical studies documenting these prob- with BI, a system for matching people with specific Even after we have a system for classifying people with BI, a lems vary in regard to the age, interventions, and knowledge of the comprehensive system for matching people with injury characteristics, and postinjury interval of participants in- set of interventions needed, we will not be successful specific interventions, and knowlin meeting the needs of persons with BI until cluded. A systematic compiling of edge of the comprehensive set of this literature is a first step toward interventions needed, we will not adequate infrastructure is in place. documenting needs of persons at be successful in meeting the needs different ages, stages of recovery, time post-injury, and different of persons with BI until adequate infrastructure is in place. Inpatterns of problems. While empirical studies are important, frastructure is needed to allow for periodic screening of persons qualitative data on problems and needs, obtained directly from with BI at regular intervals across the lifespan. The screening persons with BI and their caregivers, are also important. The would include the problems and environmental characteristics quantitative and qualitative data compiled can serve as a com- included in the classification system. Persons who were identiprehensive list of problems and needs requiring intervention, for fied through screening as having specific clusters of problems and persons of different ages and along a post-injury continuum. characteristics would be referred for the appropriate treatments In order to reach the second goal, of knowledge of types of that have been identified through the taxonomy of interventions. interventions needed, we will first need an understanding of Their progress and outcomes would then be monitored at reguwhat predicts certain outcomes. Long term follow-up studies lar intervals, and further referrals would be made as necessary. have shown that while some individuals show no change in the Infrastructure is also needed to follow people over time and to years following a BI, others decline and still others improved facilitate their use of available resources. We need infrastructure (See Hammond & Malec, this issue). How can we identify for training and funding of resource facilitators/case managers. those persons with high risk and complex needs? What are the We need a system of networks to identify existing resources and predictors of whether someone experiences emotional distress promote the development of new resources. Use of technology after injury? What are the predictors of who is able to achieve to link people with comprehensive resources should be explored. good participation outcomes like returning to work or a full For example, comprehensive resource websites where people can social life? There are numerous empirical studies on predictors enter information about themselves and be directed to specific of psychosocial outcomes after BI. However, the quality of services could reach more people at a potentially lower cost. Electhese prognostic studies varies, and there is often insufficient tronic record systems that can be utilized throughout all stages evidence for the value of specific predictors (e.g., self-reported of the recovery process, including long-term proactive resource symptoms or problems, environmental factors). An empirically- facilitation, are needed. Methods of promoting access to services, include brief, intensive rehabilitation followed by a series of contacts and structured interventions over a longer period of time. Ideally these interventions would be collaborative in nature and driven by input from the patient and family; be based upon best evidence or best clinical practice; and focused on well-being, social participation, and quality of life. This type of service delivery model would better ensure maintenance of gains made in rehabilitation, provide support to caregivers, take advantage of neuropslasticity (Doidge, 2007) and late cortical recovery (Mills et al., 2001; Hammond et al., 2004), and address needs that emerge following discharge from rehabilitation (Corrigan et al., 2004). Other advantages to this approach might include a reduction in the onset of secondary disabling conditions, maladaptive behaviors and rates of re-hospitalization.

BRAIN INJURY PROFESSIONAL

particularly for traditionally underserved groups and for people in rural areas, need to be established. Given the potential for under-funding of needed services, emphasis on self-management and advocacy training for persons with BI and their caregivers will be important.

Summary and Next Steps

We recommend the development of a psychosocial intervention matrix to help manage BI as a chronic condition. Individual follow-up care plans need to be established post-injury, with established follow-up intervals over a lifetime. Based on prognostic indicators and evaluation/screening for known psychosocial problems, persons with BI would be provided age-appropriate, proactive interventions to maximize life activity and psychosocial functioning and promote aging well with a BI. Steps to achieve a psychosocial intervention matrix to manage persons with BI include: • systematic literature review to identify the psychosocial conditions that interfere with optimal participation over the lifespan of a person with BI; • compilation of a taxonomy (DeJong et al, 2004) of available best practice and evidence- based interventions that address emergent and active psychosocial conditions, promote participation and quality of life, and is based on recovery stages and post-injury needs over a lifespan, including the effects of aging; • refinement of the predictors of long term psychosocial outcomes and participation in society in order to match the interventions with the person at the appropriate time post injury; the National Institute on Disability and Rehabilitation Research (NIDRR) is currently funding a grant to develop a classification system of symptoms and environmental characteristics that predict psychosocial outcomes (RRTC on Developing strategies to foster community integration and participation for individuals with TBI; see http://www.tbicommunity.org/); • development of an evidence-based chronic disease management protocol for follow-up and continuity of care to link the person with BI to community-based resources and support as medical and psychosocial needs evolve over the lifespan post-BI. References

Corrigan JD, Whiteneck G, Mellick D. Perceived needs following traumatic brain injury. Journal of Head Trauma Rehabilitation 2004;19:205-16. DeJong G, Horn SD, Gassaway JA, Slavin MD, Dijkers MP. Toward a taxonomy of rehabilitation interventions: using an inductive approach to examine the “black box” of rehabilitation. Archives of Physical Medicine and Rehabilitation 2004; 85:678-86. Doidge N. The Brain that Changes Itself. Penguin Books, New York, 2007. Gerring JP, Wade S. The essential role of psychosocial risk and protective factors in pediatric traumatic brain injury research. Journal of Neurotrauma 2012;4:621-8. Hammond FM, Grattan KD, Sasser H et al. Five years after traumatic brain injury: a study of individual outcomes and predictors of change in function. NeuroRehabilitation 2004;19:25-35. Jorge RE, Robinson RG, Moser D, Tateno A, Crespo-Facorro B, Arndt S. Major depression following traumatic brain injury. Archives of General Psychiatry 2004;61:42-50. Mills SR, Rosenthal M, Novak TA et al. Long term neuropsychological outcome after traumatic brain injury. Journal of Head Trauma Rehabilitation 2001;16:343-55. Morton MV, Wehman P. Psychosocial and emotional sequelae of individuals with traumatic brain injury: a literature review and recommendations. Brain Injury 1995;1:81-92. Simpson G, Tate R. Suicidality in people surviving a traumatic brain injury: prevalence, risk factors and implications for clinical management. Brain Injury 2007;21:1335-51. Tsaousides T, Cantor JB Gordon WA. Suicidal ideation following traumatic brain injury: prevalence rates and correlates in adults living in the community. Journal of Head Trauma Rehabilitation 2011;26:265-75.

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conferences 2013

MARCH 6-9 – 21st European Congress of Psychiatry EPA2013, Nice, France. For more information, visit www.epa-congress.org 7-8 – International Conference on Recent Advances in Neurorehabiliation 2013, Valencia, Spain. For more information, visit www.icranconference.com 22-23 – 8th Annual Brain Injury Rehabilitation Conference, Carlsbad, CA, USA. For more information, visit www.scripps.org/ events/brain-injury-rehabilitation-conference April 18-21 – NORA Annual Meeting, San Diego, CA, USA. For more information, please visit http://nora.cc/2012-conference. html may 18-23 – ASNR 51st Annual Meeting, San Diego, CA. For more information, visit www.asnr.org June 16-20 – ISPRM World Congress, Beijing, China. For more information, please visit www.isprm.org September 18-21 – 26th Annual Conference on Legal Issues in Brain Injury, New Orleans, LA. For more information, visit www.nabis. org 18-21 – 11th Annual Conference on Brain Injury, New Orleans, LA. For more information, visit www.nabis.org November 12 – 16 – 2013 ACRM Annual Conference: Progress in Rehabilitation Research, Orlando, FL. For more information, visit www.acrm.org 2014 MARCH 19-23 – IBIA Tenth World Congress on Brain Injury, San Francisco, California, USA. For more information, visit www. internationalbrain.org

legal spotlight “Men stumble over the truth from time to time but most pick themselves up and hurry off as if nothing happened” – Winston Churchill Mission Possible: Collaboration Several years ago I received a phone call from Dan, father of Cindy, a nineteen year old whose small car had been crushed in a violent collision with a dump truck in North Florida. With his voice quivering, Dan asked if I would meet him at the trauma center as soon as possible. Within a few hours I found myself in a familiar but emotionally charged environment. Dan was visibly shaken as he struggled to understand why his little girl was in a coma and wondered aloud whether she would ever wake up. Admittedly he had many questions related to his daughters Traumatic Brain Injury (TBI) that I was regrettably, at the time, not equipped to answer. As uncomfortable as I became at being unable to address his immediate concerns, I reminded myself that I was there as an “attorney” and Cindy’s medical care was outside of my “box”. In assessing the merits of the case, I considered the severity of the injury, which was apparent; the probability that someone else was responsible for the collision; and whether any liability insurance was available on the dump truck and its driver. We decided to take the case. Right away Cindy’s case presented a frequently encountered problem: both she and her father were uninsured. Although I was reasonably confident we would obtain a financial recovery for her in one to two years, she needed help now. Cindy came out of her coma in a few days, which was a great relief to her father, but now the reality of her situation was beginning to settle in. Who would pay for her medical bills? How would she get the necessary rehabilitation and therapy she desperately needed? Where would she live? Dad was physically unable to care for her, so who would? Would she ever return to school? Would she be able to work? Once again I tried in vain to push thoughts of doing something more for Cindy out of my mind, after all I was just her lawyer, what could I do? In that moment of uncertainty I became aware that I had stumbled over a truth in my profession. Legal representation by itself would be insufficient to meet Cindy’s immediate healthcare and psycho-social needs. Additionally, as an uninsured patient/client there was very few resources Cindy could access without assistance. With some hesitation, I stepped out in faith and threw myself into Cindy’s complicated world of accessing quality healthcare and resources for the uninsured. At first my interest in Cindy’s care was met with skepticism and at times resistance. Her family’s dynamics were not atypical. Her father became her daily emotional caregiver. Intervention in his life was necessary to educate, guide, and help support his decision to be by his daughter’s side. Cindy’s case eventually resolved and we were able to reimburse and pay for all of her past medical expenses and provide a measure of financial stability for her future. For me, Cindy’s case was not so much of a success story as it

was a realization that prior to addressing Cindy’s non-legal needs I had at some level probably failed many of my past TBI clients and their families in addressing their comprehensive needs. My paradigm had unexpectedly shifted. Merely thinking “outside of the box” would not be enough. What I learned was that I needed a bigger box, a box that included committed and passionate healthcare professionals willing to collaborate with Cindy’s lawyer because they appreciated the bigger picture. I can say with great confidence that Cindy’s medical and rehab team, without whom she would not be living the life she is today, were some of the most caring and dedicated healthcare professionals I have ever worked with. I genuinely believe the vast majority of healthcare and legal professionals share the same passion to help the patient/client achieve meaningful quality of life following a TBI. In order to have the greatest impact on the overall outcome of the TBI patient/client we must address the full spectrum of the patient and family needs. Equally important is the willingness for the legal and healthcare communities to collaborate as a true multi-disciplinary team. Perhaps we have stumbled on a truth or perhaps not. In either case a choice must be made by us to whom the responsibility and trust falls to care for TBI families. We can ignore the truth, remain in our respective silos of group think, hurry off and visit the next patient/client or we can stop and ask ourselves do I need a bigger box?

About the Author

Frank Toral is the Senior Partner of Toral Garcia Battista, a Florida-based law firm focusing on brain and spinal cord injury cases. Frank is a passionate advocate for brain and spinal cord injury survivors and their families and has served in various leadership and advisory roles with multiple organizations including Brain Injury Association of Florida, Brain Injury Association of America, Sarah Jane Brain Foundation and the University of Florida Presidents Council. Frank received his Bachelor of Science in Political Science from the University of Florida and his Juris Doctorate from Shepard Broad Law School at Nova Southeastern University. Frank is a frequent speaker and contributor on Brain injury topics and issues and has also authored the handbook Brain Injury: Where do we go from here?. Frank founded the Toral Family Foundation whose mission is to collaborate with the healthcare community to improve the lives of all persons with a brain or spinal cord injury through research, education and access to resources. BRAIN INJURY PROFESSIONAL

brain bytes The Defense Department added new features to its website for military children

The Defense Department added new features to its website for military children, MilitaryKidsConnect.org, to help parents and educators explain difficult topics associated with military life. Since its launch last January, MilitaryKidsConnect.org has served more than 125,000 visitors and won five industry excellence awards. To mark the one-year anniversary, the website has new content designed for children, parents and educators. The new features include: • Military culture videos and lesson plans for teachers, school counselors and educators to better understand the differences between military and civilian youth experiences • Graphic novels and minidocumentaries by military kids sharing their experiences • New modules for children and parents on handling grief, loss and physical injury The website uses innovative ways to help military youth cope with the unique strains of military life. In addition to disruptions from parents deploying to assignments away from home, military children are affected by moving frequently,

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changing schools and making new friends. They also have to live with readjustment issues a parent might experience after a deployment. These issues may be associated with post-traumatic stress or physical disabilities, for example. For more information see DCoE Public Affairs (January, 2013) Long-term consequences for those suffering traumatic brain injury Researchers from the University of South Florida and colleagues at the James A. Haley Veterans’ Hospital studying the long-term consequences of traumatic brain injury (TBI) using rat models, have found that, overtime, TBI results in progressive brain deterioration characterized by elevated inflammation and suppressed cell regeneration. However, therapeutic intervention, even in the chronic stage of TBI, may still help prevent cell death. While TBI is generally considered an acute injury, secondary cell death caused by neuroinflammation and an impaired repair mechanism accompany the injury over time, said the authors. Long-term neurological deficits from TBI related to inflammation may cause more severe secondary injuries and predispose long-term survivors to age-related neurodegenerative diseases, such as Alzheimer’s disease, Parkinson’s disease and post-traumatic dementia. Study is published in the journal PLOS ONE, January, 2013. New model of tau pathology and brain diseases Dr. Virginia M.-Y. Lee, Ph.D., MBA, director of the Center for Neurodegenerative Disease Research and Professor of Pathology and Laboratory Medicine at the Perelman School of Medicine, University of Pennsylvania, published their findings

on brain diseases associated with the misformed protein tau. The findings included Alzheimer’s disease and frontotemporal lobar degeneration with tau pathologies that are characterized by neurofibrillary tangles (NFTs) comprised of pathological tau filaments. Tau tangles are also found in progressive supranuclear palsy, cortical basal degeneration and other related tauopathies, including chronic traumatic encephalopathy due to repetitive traumatic brain injuries sustained in sports or on the battle field. By using synthetic fibrils made from pure recombinant protein, Penn researchers provide the first direct and compelling evidence that tau fibrils alone are entirely sufficient to recruit and convert soluble tau within cells into pathological clumps in neurons, followed by transmission of tau pathology to other inter-connected brain regions from a single injection site in an animal model of tau brain disease. “Our new model of tau pathology spread provides an explanation to account for the stereotypical progression of Alzheimer’s and other related tauopathies by implicating the cell-to-cell transmission of pathological tau in this process,” says Lee. Study is published in the Journal of Neuroscience, January, 2013 Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury Update Status of PTSD and TBI Care A top Defense Department health official told a Pentagon task force that determining the impact of mental health programs across the military will be a key project this year for the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury. DCoE’s director, Navy Capt. Paul S. Hammer, listed accomplishments over the past year as well as areas

where improvement is needed, including “streamlining functions that effectively accomplish the stated DCoE mission and vision.” “Our job is to make the system better so that our service members, their families and veterans get better care,” he told the Recovering Warrior Task Force, whose mission is to provide DOD with advice on managing care for post-traumatic stress disorder and TBI. In addition, he called on DOD as well as the services to adopt strategies to better recognize PTSD among returning warriors and to step up efforts to ensure those who need treatment stick with it. The Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury was established in 2007 to develop excellence in prevention, outreach and care for service members with psychological health conditions including TBI. It oversees three centers: the Defense and Veterans Brain Injury Center, the Deployment Health Clinical Center and the National Center for Telehealth and Technology. Story published in American Forces Press Service, Washington, DC, Jan. 16, 2013 Poorer neighborhoods often have less safe playgrounds Most playgrounds are safe for children, but many of them -- particularly those in poorer neighborhoods -- need improvement, a Chicago-area survey found. The good news is that many of the safety issues, such as increasing the depth of wood chips covering playground surfaces, are easily correctable. And a softer landing can mean the difference between a harmless fall and one that causes serious injury, an expert said. There are about 500 playgrounds in the Chicago area, according to study background information. The researchers assessed 467 of those playgrounds in 2009 and 459 in 2010. In 2011, the researchers also went back and reevaluated the 154 playgrounds that had failed the 2010 survey. The study found that in playgrounds

with a loose-fill surface, most didn’t have the recommended 9 to 12 inches of fill in place. But nearly all of the playgrounds did have cover over the concrete footings used to secure playground equipment, and provided a 6-foot use zone of soft surfacing. Similarly, neighborhoods with a larger percentage of the population living below the poverty level had more failing playgrounds, and fewer playgrounds overall. Areas with more blacks had more failing playgrounds, and areas with more Hispanics had fewer playgrounds, according to the study. Study published in the February, 2013 print issue of Pediatrics. The National Football League commits $30 million donation to the Foundation for the National Institutes of Health to support medical research. The Foundation for the National Institutes of Health (FNIH) announces that the National Football League (NFL) has agreed to donate $30 million in support of research on serious medical conditions prominent in athletes and relevant to the general population. This is the largest philanthropic gift the NFL has given in the league’s 92-year history. With this contribution, the NFL becomes the founding donor to a new Sports and Health Research Program, which will be conducted in collaboration with institutes and centers at the National Institutes of Health (NIH). Specific plans for the research to be undertaken remain to be developed, but potential areas under discussion include: chronic traumatic encephalopathy; concussion; understanding the potential relationship between traumatic brain injury and late life neurodegenerative disorders, especially Alzheimer’s disease; chronic degenerative joint disease; the transition from acute to chronic pain; sudden cardiac arrest in young athletes; and heat and hydration-related illness and injury. The FNIH hopes to welcome other donors, including additional sports

organizations, to the collaboration. Announcement published at www.ninds. nih.gov. NIH Conference investigates which neuroimaging tools and biomarkers show promise in diagnosing CTE A major focus of the conference was how the pathological features of CTE identified at autopsy could be correlated with imaging studies of autopsied brains. If correlations could be determined, the neuroimaging techniques could then be tested for their ability to diagnose CTE in living persons. Diffusion tensor imaging (DTI), a type of magnetic resonance imaging (MRI) that reveals white matter tracts, shows promise for detecting CTE. Substantial technological improvements are needed before DTI is ready for routine clinical use, according to David Brody, M.D., Ph.D., Associate Professor of Neurology at Washington University School of Medicine. MRI studies also are complicated by the enormous amount of data collected, said Susumu Mori, Ph.D., Assistant Professor at Johns Hopkins University School of Medicine. Before DTI and other MRI techniques are applicable for assessing CTE in a living person, their accuracy and precision need to improve. Positron emission tomography, or PET scanning, is another imaging tool that shows promise for detecting CTE. PET scanning can map the location of particular molecules in the brain. Novel PET markers now are being validated to detect tau abnormalities associated with neurodegenerative disease, according to Hartmuth Kolb, Ph.D., Vice President of Biomarker Research at Siemens Healthcare. A PET marker that identifies the tau pathology of CTE in living individuals would constitute a major breakthrough in the field. Report on the Neuropathology of Chronic Traumatic Encephalopathy Workshop (December 5-6, 2012), National Institutes of Health, Bethesda, Maryland, Sports and Health Research Program.

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literature review Tell Tale Brain: a Neuroscientists Quest for What Makes us Human. By V.S.. Ramachandran, W.W. Norton, 2011 Deb Braunling-McMorrow, Ph.D. January, 2013 This special edition of Brain Injury Professional focuses on further defining the taxonomy of brain injury as a chronic condition with potential impact over the lifespan of an individual which may require long term oversight and management. Inherent in this is the need to reframe the thinking of physicians, persons with brain injury and their loved ones, payers and legislators from brain injury as a one-time event to brain injury as an acquired condition. For that reason I chose a book on the brain from the popular press to gain further understanding of the layperson’s baseline knowledge of the uniqueness of the brain and its malfunctions. Certainly most popular examples of books about the brain have been Dr. Oliver Sack’s bestselling books on peculiarities of the brain. I chose the latest book by V.S. Ramachandran, the Tell Tale Brain: A Neuroscientist’s Quest for What Makes us Human. Dr. Ramachandran, somewhat of a Renaissance man, was fascinated with Sherlock Holmes as a child, and chemistry, botany, astrology, religion and biology in later years. While grounded in neuroscience, he is intrigued by how we perceive the world, what defines consciousness, how to account for the mysterious faculties that define humans such as language, art, creativity, awareness and religion and what goes wrong in autism and other neurological disorders. He briefly traces the development of psychology and neuroscience and states that “after decades of floundering in the shadow of ‘hard’ science”, the age of neuroscience has dawned. As with Dr. Sack’s, he uses mysterious clinical examples of brain malfunction to explain how the normal healthy brain functions. Certainly this approach is what draws not only the expert in neuroscience, the clinician but also the lay reader. He highlights the evolutionary process yet clearly distinguishes elements such as brain plasticity and ‘mirror’ cells that allow the human species to attain culture, aesthetics, and self-awareness. These mirror cells activate when we perform certain behaviors or observe others doing so. Ramachandran suggests that this elaborate system of mirror neurons is essential in creating self-awareness and

refers to them as “empathy neurons”. In turn when these mirror neurons are “broken” it may result in a lack of self-awareness as in Cotard syndrome, a condition in which the person believes they are dead or a “walking corpse”. In addition to chapters on autism, phantom limbs, and synesthesia (people who taste colors, see sounds and hear shapes), he provides case examples of “unusual brain wiring” or as he speculates again, when mirror cells are not properly functioning. He also discusses analyzing “brain maps” as evidence of brain plasticity to predict greater functional recovery following stroke and traumatic brain injury. Dr. Ramachandran makes no apologies for what he refers to as his speculative side based on a research foundation and he uses this grounding to extrapolate on what “might” be true and highlights the use of “small science” and simple experiments from which to assert broader speculations about human behavior. While he prefers low technology and the “Q tip over the brain scanner” as you will see in the first chapter, to make the point that he believes that good science is driven by good questions, not good methodology. While critics may site his speculations as veering too far from the data when suggesting neuroscience may provide answers as to why one might prefer Giuseppe Arcimboldo over Vincent Van Gogh, it is such speculation that also makes this book provocative. Ramachandran believes that it is through allowing for speculations rooted in science that may propel us to yet greater scientific discoveries. It is also this speculation and intriguing stories that will have you enjoy reading this book.

About the reviewer

Dr. Debra Braunling-McMorrow is the President and CEO of Learning Services. She serves on the board of the North American Brain Injury Society. Dr. McMorrow is a 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. Additionally, Dr. McMorrow has served on several national committees, editorial boards, and peer review panels. 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 almost 30 years

BRAIN INJURY PROFESSIONAL

bip expert interview Brain Injury as a Chronic Disease An Interview with Brent Masel, MD Brent E. Masel, M.D. is the President and Medical Director of the Transitional Learning Center (TLC) at Galveston. Dr. Masel received his Medical Degree from the Loyola University Stritch School of Medicine and completed his post-graduate training from the University of Texas Medical Branch (UTMB). He is a Board Certified Neurologist. After 16 years of private practice, he accepted his position with TLC. He holds clinical appointments at UTMB in the Departments of Neurology, Internal Medicine, Family Medicine, Physical Therapy and Occupational Therapy. He has conducted research and published in the areas of brain injury rehabilitation and virtual reality, as well as hyperbaric oxygen treatment, sleep abnormalities, metabolic abnormalities, and hormonal dysfunction after brain injuries. Dr. Masel is the Past President of the United Way of Galveston, and serves on the Board of Directors of the TIRR Foundation, the North American Brain Injury Society, and the Brain Injury Association of America where he serves as the National Medical Director. He is the recipient of the Lifetime Achievement Award from the Brain Injury Association of Texas and the Innovations in Clinical Treatment Award from the North American Brain Injury Society. What do you see as the major problems with current medical treatment of brain injury, and how would treating brain injury as a chronic condition improve the situation? When I first wrote my paper (Masel & DeWitt, 2010) on the concept of brain injury as a chronic disease, Susan Connors (Executive Director of the Brain Injury Association of America) told me that I would become the “darling” of the plaintiff’s bar.1 And although I certainly embraced the idea of being somebody’s darling, that certainly wasn’t the purpose. Brain injury is not being taught in medical schools. Both of my sons are physicians, and all they learned about brain injury was at my kitchen table. Physicians spend a lot of time in school learning about obscure diseases (especially neurologists like me) and yet we’re not taught about a medical condition like brain injury that every single medical specialist will encounter over and over. Chronic brain injury MUST be a part of every health care student’s curriculum. Up to now, the overwhelming majority of basic science brain injury researchers have focused on the first 90 minutes after the injury in order to find something to stop the toxic cascade of events that lead to increased morbidity and mortality. It is clear, however, that there is another toxic cascade: slow, progressive, irregular and chronic, that becomes a part of the life of almost every individual with a brain injury. Bench scientists must be aware of this, and funding sources must give the scientists the support needed to address these issues. I think the science of brain injury is where we were with the science of cancer awareness and treatment 50 years ago. With the appropri34 BRAIN INJURY PROFESSIONAL

ate education and allocation of resources, we can start talking about a cure. Brain injury medical and rehabilitation providers usually like to focus on the positive. How would you respond if they object to reminding patients with brain injury that they have a chronic condition? We should always focus on the positive. Nevertheless, if we are not honest about the issue, we do that patient an enormous disservice. No one likes to give bad news, but when that is our job, we should do that professionally and compassionately. My approach to practicing medicine has always been to picture myself or a loved one on the other side of the desk. What would I want to be told? Our approach to explaining the issues of chronic brain injury should be exactly the same. Individuals with brain injury and their families may also object to thinking of brain injury as a chronic disease or condition. What would you tell them? I hate to sound cold hearted but it is what it is. When we diagnose a cancer and explain it to the family and patient, we lay out the good and the bad. We tell them the various treatment options and the odds of having specific issues relative to the treatment and the prognosis of the disease. We give them our very best educated guess as to what the future holds—and what can be done to alter that future. An individual with a brain injury deserves no less. An informed educated patient and/or their caregiver is going to have the best

potential possible outcome. There is unfortunately little that a patient with cancer can do to control their destiny. An individual with a brain injury can indeed alter many aspects of their disease. Can you think of a particular patient in whose care you have been involved whose outcome would have been much improved by a chronic disease management approach? I am aware of several patients with post-traumatic epilepsy who were “weaned” off their anticonvulsants by the family (because the patient was seizure free), only to later have major convulsions requiring emergency department evaluations. Proper education and disease management would have prevented this from occurring. Would managing brain injury as a chronic condition be different for mild brain injury vs. moderate or severe brain injury? Just as all cancers have different prognoses and treatments, as we all know, no two brain injuries are alike. The approach to an individual with a mild brain injury would be no different than with any other disease: here’s what we know; here are the odds; here is what science can do to improve your situation; and here is what YOU can do to improve the situation for yourself. Unfortunately, at this time, we don’t have a lot of knowledge about mild brain injury. As a neurologist, how would your care of individuals with brain injury change if you had the financial support to treat brain injury as a chronic condition?

I really don’t think that my care would change much, although I might increase the frequency of follow-up. I would, however, become more of a case manager, and if allowed, would refer the patient for regular follow-ups with allied health personnel for evaluation and treatment to prevent decline. The recent ruling that the CMS must pay for treatment to prevent decline in the Medicare population was an enormous victory for brain injury.

vent them. As an example, if one has spasticity, stretching must be done every single day—or it will clearly get worse—which then leads to more debility, becoming bedridden, and ultimately an increased risk for infections and early death. As health care providers, we can recommend, advise and admonish, but ultimately it is the responsibility of the patient and/or their caregivers to help prevent this from happening.

Chronic disease management for other chronic conditions like asthma or diabetes usually emphasizes the role of patients and families in managing their condition. What are the roles for patients and families in managing brain injury?

Providing chronic or lifelong care for brain injury will no doubt cost more and third party payers will try to find reasons not to pay. Their chief gambit these days is usually to demand an extremely high level of research evidence to support any practice change. How should medical care providers respond?

As I mentioned previously, most medical professionals have very little knowledge and training in brain injury. Therefore, it is the educated patient and family who become the manager of the disease. One must understand the morbidities of chronic brain injury in order to pre-

The data are there, and the numbers are irrefutable. As an example, 40% of individuals with a moderate-severe traumatic brain injury have neuroendocrine dysfunction. Shouldn’t everyone

in that situation be screened and treated? To say that we shouldn’t treat someone with hypothyroidism from their brain injury because it hasn’t been proven to make a difference in “that population” is no different that denying them treatment for their diabetes or hypertension for the same reason. A key priority in our field is to establish treatment guidelines—even though those guidelines may be based predominantly on consensus. The truth is, that’s the way most medical guidelines as well as the standard of care ultimately are established. We should not be held to a different standard than the rest of the medical field. And we must use those guidelines to relentlessly pursue what is best for our patient. Reference

Masel BE, DeWitt DS. Traumatic brain injury: a disease process, not an event. Journal of Neurotrauma 2010;27(8):1529-40.

Editors’ Note

“Plaintiff ’s bar” refers to attorneys who generally advocate for individuals with brain injury in court cases seeking financial compensation for injuries and support for medical and other necessary care.

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non-profit news NORTH AMERICAN BRAIN INJURY SOCIETY Building on the success of our 2012 meeting, we are pleased to announce that Tina Trudel, PhD, has again agreed to serve as the chair of the annual NABIS conference. The conference will be held September 18-21, 2013, at the InterContinental Hotel in New Orleans, Louisiana, steps away from the world famous French Quarter. The planning committee is in the process of developing an integrated educational program that promises to be of interest to researchers, clinicians, administrators, and other multidisciplinary brain injury professionals. The meeting will open with a special pre-conference on state of the art neuroimaging. The submission site for scientific abstracts is now open and brain injury professionals are encouraged to submit their original research for presentation at the conference. All abstracts accepted for presentation will be published in the Journal of Head Trauma Rehabilitation. The conference will be held in conjunction with the 26th Annual Conference on Legal Issues in Brain Injury. For more information, visit www.nabis.org.

Brain Injury association of america

2012 was another stellar year for the Brain Injury Association of America (BIAA). We welcomed almost 600,000 unique visitors to our website and together with our affiliates answered more than 40,000 individual requests for information and resources. Our quarterly newsletter, THE Challenge!, was mailed to more than 60,000 homes and businesses and downloaded an average of 4,000 times per month. BIAA’s Academy of Certified Brain Injury Specialists processed 1,731 certification applications – a record high – and we hosted 18 Mitch Rosenthal, David Strauss and Caregiver webinars, also attracting record attendance. 2013 is already shaping up to be a big year. We are actively pursuing funding for the development and dissemination of Guidelines for Rehabilitation and Chronic Disease Management of Adults with Moderate to Severe Traumatic Brain Injury and, in collaboration with the Brain Injury Research Center of the Mount Sinai School of Medicine, will soon publish the results of our NIDRRfunded study on how schools are meeting the needs of children with TBI. We are introducing two new webinar series – one for advocates and the other for individuals with brain injury and family members, sponsored by the Butch Alterman Memorial Fund. March is Brain Injury Awareness Month. Again this year, BIAA and its affiliates will coalesce under the theme of “Anytime, Anywhere, Anyone – Brain Injuries Do Not Discriminate” as we conduct hundreds of local events, including Walk for Brain Injury in Texas and Bowling for Brain Injury in Indiana, Illinois, Missouri, Nebraska, and New York. In collaboration with other TBI stakeholder groups, we will again support the Congressional Brain Injury Task Force in conducting Awareness Day on Capitol Hill, March 13, 2013, followed by public policy strategy meeting to which BIAA has invited representatives from the American Congress of Rehabilitation Medicine, National Association of State Head Injury Administrators, North American Brain Injury Society, Sarah Jane Brain Foundation, TBI Model Systems Project Directors, and the U.S. Brain Injury Alliance. For more information about BIAA’s advocacy activities and other programs and services, please visit www.biausa.org. 36 BRAIN INJURY PROFESSIONAL

DEFENSE CENTERS OF EXCELLENCE

This quarter’s update from Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury (DCoE) offers, “Tips for Treating Chronic Symptomatic Mild Traumatic Brain Injury and Post-Traumatic Stress Disorder.” Although useful for all who treat, and otherwise work with, mild traumatic brain injury, this article should be of particular interest to civilian health care providers. Traumatic brain injury (TBI) has been described as the “signature wound” of the Iraq and Afghanistan conflicts. Modern body armor has greatly enhanced a warrior’s chance of survival after sustaining a TBI. Increased awareness and screening measures have helped to identify individuals needing care, however, caring for chronic, symptomatic mild TBI patients remains challenging in the clinical setting. Posttraumatic stress disorder affects thousands of individuals who have experienced a traumatic event. Our nation’s most recent generation of deploying men and women are no exception. The Defense Department has an increased need for psychological health care providers, and many non-military providers have answered the call to treat service members and veterans. In this article, Tips for Treating Chronic Symptomatic Mild Traumatic Brain Injury and Post-Traumatic Stress Disorder, health care providers will find detailed tips, resources, educational information and advice on how to work with military patients. For more information, please visit dcoe.health.mil, or contact the DCoE Outreach Center by email, resources@dcoeoutreach. org, or phone, 866-966-1020. Assistance is available 24/7.

INTERNATIONAL BRAIN INJURY ASSOCIATION

Over 14 international organizations, including the North American Brain Injury Society, have officially endorsed the Tenth World Congress on Brain Injury scheduled for March 19-23, 2014, in San Francisco, California. The Congress is being organized under the leadership of the IBIA President, Dr. David Arciniegas, and IBIA Chairperson, Dr. Nathan Zasler, and will focus on the theme of “Neurotrauma, Technology, and Neurorehabilitation”. Drs. Arciniegas and Zasler are being supported by planning committee of internationally recognized leaders from the brain injury field representing a broad, multidisciplinary range of disciplines and subspecialties. A listing of these committees can be found on the IBIA website. In addition to the oral and poster sessions, the biennial event will feature a host of world renowned invited speakers, panels and workshops providing attendees with state-of-the-art research on brain injury research, assessment and treatment. As in previous events, delegates will have the opportunity to enjoy wonderful planned social events conducive to establishing new friendships and future collaborations. Members of NABIS should note that they are entitled to register for the Congress at the discounted IBIA member rate. For more information, visit www.internationalbrain.org.

NATIONAL ASSOCIATION OF STATE HEAD INJURY ADMINISTRATORS

The National Association of State Head Injury Administrators asks that you join us at the Congressional Brain Injury Task

Force (CBITF) Brain Injury Awareness Day Wednesday, March 13, 2013. This year’s Awareness Day will be held at the Rayburn House office in Washington DC. This is the one day that national attention is focused on brain injury! It is an excellent opportunity to learn about current federal and national research, prevention and rehabilitation/community services initiatives. For a detail agenda of the day’s activities, visit www.nashia.org. Plans are now fully underway for our 24th NASHIA State of the Sates meeting to be held in Detroit, Michigan at the Dearborn Inn- Marriott, October 7 to 10! Please contact us if you have specific topic areas that you would like considered by our planning committee NASHIA, its partners, and the Congressional TBI Taskforce continue their efforts on the re-authorization of the TBI Act which includes: • The Health Resources and Services Administration (HRSA) to provide funds to states to develop TBI programs that improve access to service delivery for individuals with TBI. • Funding to Protection and Advocacy services in each state to ensure legal services are available for individuals with TBI. • Funding to Centers for Disease Control and Prevention (CDC) for surveillance, outreach, and prevention efforts specific to TBI, including the creation and dissemination of treatment guidelines. Remember to contact your legislators to support this vital piece of legislation! Information on state TBI programs, NASHIA technical assistance, and other resources may be found at www.nashia.org

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UNITED STATES BRAIN INJURY ALLIANCE

The United States Brain Injury Alliance (USBIA) is working to improve the lives of children and adults by preventing brain injuries, increasing awareness and understanding of brain injury, and building support. As we continue in our first year as a nationwide organization, USBIA is expanding our focus on advocacy. To inform Congress about the needs of people with brain injury and their caregivers, USBIA is conducting a needs assessment of members which will form the basis for a larger survey. USBIA also is participating in the Congressional Brain Injury Task Force Awareness Day activities. To hone the advocacy skills of our state leaders, the United States Brain Injury Alliance has conducted two webinars on advocacy issues in February and will be continuing this as an on-going series throughout the year. These trainings are complemented by a collection of model state braininjury-related legislation and advocacy campaign documents which are housed on the www.USBIA.org website. USBIA is launching a monthly e-newsletter for state Alliances to distribute to their members. The inaugural February 2013 issue contains Brain Injury Awareness Month campaign materials developed by USBIA. To spread the word about USBIA and our resources, Board members have accepted invitations to present keynote addresses at some upcoming statewide conferences during the spring. To increase the capacity of state Alliances, we have paired state Alliance staff and volunteer leaders with mentors who have expertise in identified needs. USBIA also is focused on our internal operations. The Board is drafting the organization’s strategic plan and readying for the establishment of additional committees. We look forward to expanding the opportunities for participation in USBIA by those affected by brain injury and others with an interest in service.

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Restore Neurobehavioral Center is a residential, post acute healthcare organization dedicated exclusively to serving adults with acquired brain injury who also present with moderate to severe behavioral problems. Services range from intensive inpatient neuro-rehabilitation and transitional community re-entry services to long term supported living services. Restore Neurobehavioral Center, located in a suburb north of Atlanta, is the site of our inpatient post acute neuro-rehabilitation program as well as one of our supported living sites. We operate two other community living sites, Restore-Lilburn (GA) and Restore-Ragland (AL).

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legislative roundup “I am a firm believer in the people. If given the truth, they can be depended upon to meet any national crises. The great point is to bring them the real facts.” - Abraham Lincoln As noted in the last issue of Brain Injury Professional, federal spending continues to be front and center with the new 113th Congress, which convened January3rd, and the President who was sworn in for his second term two weeks later. Congress is faced with the self-imposed sequestration, along with appropriations for federal programs for the remainder of this year, and the raising of the debt ceiling to pay for existing bills -- all coming to a head in March, unless action is taken prior to that. Unless Congress takes action by March1st, non-defense discretionary programs will take at least a five percent across-the-board cut. This will impact most programs affecting disability, health, education, research, and brain injury. Discretionary spending refers to programs requiring an annual appropriation, while mandatory spending programs, such as Social Security and Medicare, do not need to go through the annual congressional budget process. Congress may make changes to mandatory programs, such as changing eligibility and benefits offered, however, which could affect overall spending. Mandatory programs have become the largest portion of the federal budget with two-thirds of the budget automatically goes to these programs. Last year, discretionary spending made up about 36 percent of the total federal budget, of which, about half of which was for military and other defense purposes. The other half of discretionary spending includes funding for primary and secondary education, transportation infrastructure, health care and rehabilitation research, veterans’ health care services, housing, special health care needs, and vocational rehabilitation. At the time of this article was written Congress was considering legislation to suspend the sequestration until May. Meanwhile, March 27th is when the Continuing Resolution, which keeps the federal government operational, ends. Congress will need to resolve the budget for yet this year, which ends September 30th. The President’s budget for fiscal year 2014, beginning October 1st, is being released late this year. However, the White House senior economic adviser has publicly stated that the President’s budget will not recommend cuts to Medicaid. While much of the focus of Congress is on federal spending, both the Administration and key members of Congress are developing strategies for addressing injuries and fatalities related to gun violence. The President has called for lifting the ban on research by directing the Centers for Disease Control and Prevention and other scientific agencies to research the causes and prevention of gun violence – a ban placed by Congress nearly twenty years ago. Both houses have also begun debating legislation which may be of interest. The House is considering the National Pediatric Research Network Act of 2013 (NPRNA), which calls on the National Institutes of Health’s Eunice Kennedy Shriver National 38 BRAIN INJURY PROFESSIONAL

Institute on Child Health and Human Development (NICHD), in collaboration with other national entities, to create a national pediatric research network focused on rare childhood diseases and conditions, including genetic disorders and birth defects. The Violence Against Women Act of 2013 has been reintroduced. Similar legislation was stalled last year with each body having a different version. Separate legislation is also being drafted to reintroduce therapy cap repeal; to reauthorize programs under the Traumatic Brain Injury Act (TBI) of 1996, as amended; and to provide funding to assist schools and coaches with developing return to play guidelines following a sports-related concussion, known as the ConTACT Act. Congressman Tom Rooney (R-FL) has agreed to be co-chair of the Congressional Brain Injury Task Force, along with Congressman Bill Pascrell, Jr. (D-NJ). The Task Force is holding its annual Brain Injury Awareness Activities on March 13, and the congressional briefing will highlight public and private partnerships that promote brain injury. The Task Force is comprised of over 120 bipartisan members, whose mission is to further education and awareness of brain injury -- including incidence, prevalence, prevention and treatment. The Task Force relies on brain injury stakeholder organizations, professionals, and individuals with brain injury and their families to help with that endeavor. As federal spending is a top priority of our elected officials, it is imperative for them to understand the impact of any proposed cuts to individuals with brain injury and their families with regard to receiving direct services; the impact on service delivery with regard to professional development and research; and the costs of injuries when rehabilitation, services and prevention activities are no longer available. Brain injury advocates should share their knowledge and expertise so that funding decisions are based on the best information possible. Anyone may provide this information through e-mails, phone calls and visits with members of their congressional delegation. Hopefully, through these efforts, Congress will make its decisions based on facts and best practices in the field. About the Editor

Susan L. Vaughn, S.L. Vaughn & Assoc., is the Director of Public Policy for the National Association of State Head Injury Administrators and consults with the Brain Injury Association of America on state policy issues. She retired from the State of Missouri in 2002, after working nearly 30 years in the field of disabilities and public policy. She served as the first director of the Missouri Head Injury Advisory Council, a position she held for17 years. She founded NASHIA in 1990, and served as its first president.

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Legal Representation Care Management Brain Injury Attorneys “In every serious injury case we have the opportunity to help make a difference in the recovery and the quality of life of our clients and their families that goes far beyond the legal scope.” -Frank Toral, Esq., Senior Partner

Improving Lives through Caring, Commitment and Community Toral Garcia Battista Attorneys at Law firmly believe that the responsibility of a law practice is not simply a successful settlement but rather providing an individual who has suffered a lifealtering injury, the resources needed to lead a greater quality of life. Focusing on Traumatic Brain Injuries and Spinal Cord Injuries, the TGB firm structure supports care management in the medical and social elements of the clients’ situation through the employment of a team that includes a Registered Nurse and Licensed Clinical Social Worker. The legal and care management team works collaboratively to address the comprehensive needs of the client and facilitate navigating the complex system of care.

The Toral Family Foundation, a 501(c)3 nonprofit organization based in Ft. Lauderdale Florida, is committed to collaborating with the healthcare community to improve the lives of all persons with a brain or spinal cord injury through research, education and access to resources. www.toralfamilyfoundation.org

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