Evaluating the HRSA
Traumatic Brain Injury Program

Committee on Traumatic Brain Injury

Board on Health Care Services

Jill Eden and Rosemary Stevens, Editors

INSTITUTE OF MEDICINE
OF THE NATIONAL ACADEMIES

THE NATIONAL ACADEMIES PRESS
Washington, D.C.
www.nap.edu



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Evaluating the HRSA Traumatic Brain Injury Program Evaluating the HRSA Traumatic Brain Injury Program Committee on Traumatic Brain Injury Board on Health Care Services Jill Eden and Rosemary Stevens, Editors INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES THE NATIONAL ACADEMIES PRESS Washington, D.C. www.nap.edu

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Evaluating the HRSA Traumatic Brain Injury Program THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001 NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competences and with regard for appropriate balance. This study was supported by Contract No. HHSH25056028 between the National Academy of Sciences and the Department of Health and Human Services. Any opinions, findings, conclusions, or recommendations expressed in this publication are those of the author(s) and do not necessarily reflect the view of the organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Evaluating the HRSA Traumatic Brain Injury Program / Committee on Traumatic Brain Injury, Board on Health Care Services ; Jill Eden and Rosemary Stevens, editors. p. ; cm. Includes bibliographical references. This study was supported between the National Academy of Sciences and the Department of Health and Human Services Contract No. HHSH25056028 ISBN 0-309-10113-1 (pbk.) 1. HRSA Traumatic Brain Injury Program. 2. Brain damage—Patients—Rehabilitation—United States. 3. Brain damage—Patients—Services for—United States—Evaluation. I. Eden, Jill. II. Stevens, Rosemary, 1935- . III. Institute of Medicine (U.S.). Committee on Traumatic Brain Injury. IV. United States. Dept. of Health and Human Services. V. Title: Evaluating the Health Resources and Services Administration Traumatic Brain Injury Program. [DNLM: 1. HRSA Traumatic Brain Injury Program. 2. Brain Injuries—rehabilitation—United States. 3. Brain Injuries—economics—United States. 4. Disabled Persons—United States. 5. Government Programs—organization & administration—United States. 6. Program Evaluation—United States. WL 354 E918 2006] RC387.5.E92 2006 362.196’8—dc22 2006010928 Additional copies of this report are available from the National Academies Press, 500 Fifth Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area); Internet, http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. Copyright 2006 by the National Academy of Sciences. All rights reserved. Printed in the United States of America The serpent has been a symbol of long life, healing, and knowledge among almost all cultures and religions since the beginning of recorded history. The serpent adopted as a logotype by the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche Museen in Berlin.

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Evaluating the HRSA Traumatic Brain Injury Program “Knowing is not enough; we must apply. Willing is not enough; we must do.” —Goethe INSTITUTE OF MEDICINE OF THE NATIONAL ACADEMIES Advising the Nation. Improving Health.

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Evaluating the HRSA Traumatic Brain Injury Program THE NATIONAL ACADEMIES Advisers to the Nation on Science, Engineering, and Medicine The National Academy of Sciences is a private, nonprofit, self-perpetuating society of distinguished scholars engaged in scientific and engineering research, dedicated to the furtherance of science and technology and to their use for the general welfare. Upon the authority of the charter granted to it by the Congress in 1863, the Academy has a mandate that requires it to advise the federal government on scientific and technical matters. Dr. Ralph J. Cicerone is president of the National Academy of Sciences. The National Academy of Engineering was established in 1964, under the charter of the National Academy of Sciences, as a parallel organization of outstanding engineers. It is autonomous in its administration and in the selection of its members, sharing with the National Academy of Sciences the responsibility for advising the federal government. The National Academy of Engineering also sponsors engineering programs aimed at meeting national needs, encourages education and research, and recognizes the superior achievements of engineers. Dr. Wm. A. Wulf is president of the National Academy of Engineering. The Institute of Medicine was established in 1970 by the National Academy of Sciences to secure the services of eminent members of appropriate professions in the examination of policy matters pertaining to the health of the public. The Institute acts under the responsibility given to the National Academy of Sciences by its congressional charter to be an adviser to the federal government and, upon its own initiative, to identify issues of medical care, research, and education. Dr. Harvey V. Fineberg is president of the Institute of Medicine. The National Research Council was organized by the National Academy of Sciences in 1916 to associate the broad community of science and technology with the Academy’s purposes of furthering knowledge and advising the federal government. Functioning in accordance with general policies determined by the Academy, the Council has become the principal operating agency of both the National Academy of Sciences and the National Academy of Engineering in providing services to the government, the public, and the scientific and engineering communities. The Council is administered jointly by both Academies and the Institute of Medicine. Dr. Ralph J. Cicerone and Dr. Wm. A. Wulf are chair and vice chair, respectively, of the National Research Council. www.national-academies.org

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Evaluating the HRSA Traumatic Brain Injury Program COMMITTEE ON TRAUMATIC BRAIN INJURY Rosemary A. Stevens (Chair), DeWitt Wallace Distinguished Scholar, Social Medicine and Public Policy, Weill Cornell Medical College, and Professor Emeritus, University of Pennsylvania John D. Corrigan, Professor, Department of Physical Medicine and Rehabilitation, Ohio State University Ramon Diaz-Arrastia, Associate Professor, Department of Neurology, University of Texas Southwestern Medical School Peter C. Esselman, Chief, Rehabilitation Medicine, Harborview Medical Center Wayne A. Gordon, Jack Nash Professor, Department of Rehabilitation Medicine, Mount Sinai School of Medicine Josette G. Harris, Associate Professor of Psychiatry and Neurology, University of Colorado School of Medicine Muriel D. Lezak, Professor Emeritus, Neurology, Psychiatry, and Neurosurgery, Oregon Health & Science University School of Medicine Gina A. Livermore, Assistant Director, Cornell University Institute for Policy Research Claudia L. Osborn, Associate Clinical Professor, Internal Medicine, Michigan State College of Osteopathic Medicine Linda Robinson, Trauma Research Manager, Inova Regional Trauma Center/Inova Fairfax Hospital Vikki L. Vandiver, Associate Professor, Graduate School of Social Work Portland State University Staff Jill Eden, Study Director Clyde J. Behney, Acting Director, Board on Health Care Services, until December 2005 John Ring, Director, Board on Health Care Services, from December 2005 Aliza Norwood, Research Assistant Ryan Palugod, Research Assistant Consultant Holly Korda, Principal, Health Systems Research Associates Editor Kerry B. Kemp, Editor

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Evaluating the HRSA Traumatic Brain Injury Program Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the NRC’s Report Review Committee. The purpose of this independent review is to provide candid and critical comments that will assist the institution in making its published report as sound as possible and to ensure that the report meets institutional standards for objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We wish to thank the following individuals for their review of this report: Kathleen Bell, University of Washington Nancy Carney, Oregon Health & Science University Keith D. Cicerone, JFK-Johnson Rehabilitation Institute Bill Ebenstein, JFK, Jr. Institute for Worker Education John Kregel, Virginia Commonwealth University Pamela H. Mitchell, University of Washington Enola Proctor, Washington University in St. Louis Mitchell Rosenthal, Kessler Medical Rehabilitation Research Anbesaw Selassie, Medical University of South Carolina Marilyn P. Spivack, Spaulding Rehabilitation Hospital Kirby Vosburgh, Center for Integration of Medicine and Innovative Technologies Gale Whiteneck, Craig Hospital

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Evaluating the HRSA Traumatic Brain Injury Program Although the reviewers listed above have provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations nor did they see the final draft of the report before its release. The review of this report was overseen by Paul D. Cleary, Harvard Medical School, and Dennis W. Choi, Merck Research Laboratories. Appointed by the National Research Council and Institute of Medicine, they were responsible for making certain that an independent examination of this report was carried out in accordance with institutional procedures and that all review comments were carefully considered. Responsibility for the final content of this report rests entirely with the authoring committee and the institution.

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Evaluating the HRSA Traumatic Brain Injury Program Acknowledgments The Committee on Traumatic Brain Injury wishes to acknowledge the many people whose time and contributions made this report possible. Special thanks go to Jane Martin-Heppel (Health and Resource Services Administration) and Kenneth Currier (National Association of State Head Injury Administrators) who continuously contributed their time and knowledge to assist the committee throughout the report. Many other representatives of state and federal TBI agencies, protection and advocacy systems, brain injury associations, and other organizations served as important sources of information. The committee acknowledges with special appreciation the testimony and other assistance of the following individuals who participated in the IOM Workshop on Traumatic Brain Injury: Ruth Brannon from the National Institute on Disability and Rehabilitative Research, Jan Brown from the TBI Technical Assistance Center Steering Committee, Alta Bruce from the Indigenous Peoples Brain Injury Association, Augusta Cash from the Alabama Department of Rehabilitative Services, Susan Connors from the Brain Injury Association of America, Susan Vaughn, Sandra J. Knudson, and Rebecca Zeltinger from the National Association of State Head Injury Administrators, Curt Decker from the National Association of Protection and Advocacy Systems, Beverly Francisco-James from the New Mexico “Empowerment” Program, Jean Langlois from the Centers for Disease Control and Prevention, Carolyn Rocchio from the Florida Brain Injury Association, Bil Schmidt from the New Mexico Department of Aging &

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Evaluating the HRSA Traumatic Brain Injury Program Long Term Services, and Manfred Tatzmann from the Michigan Department of Community Health. The committee thanks the many representatives of state TBI agencies, brain injury associations, protection and advocacy systems, persons with TBI, and family members and others who graciously gave their time for extensive interviews. Special thanks for the warm hospitality of the Colorado and Georgia representatives who hosted the IOM site visits. Thanks also to the National Center for Injury Prevention and Control at the Centers for Disease Control and Prevention. Alabama: Augusta Cash, Mike Daltry, Ellen Gillespie, Barbara Hankins, Carol Mysinger, Charles Priest, Melissa Slater, Maria Crawley California: Betty Clooney, Suzanna Gee, Jane Laciste, Roger Trent, Jane Laciste, Todd Higgins, Connie Valentine Colorado: Bill Bush, Randy Chapman, Jean Demmler, Jeanne Dise-Lewis, Mary Anne Harvey, Christine Highnam, Kenny Hosack, Helen Kellogg, Jan Nice, Geoff Peterson, Kathy Rohan-Hague, Kathleen Stillman, Barbara Gabella, Joan Bell Georgia: Susan Johnson, Mark Johnson, Tobin McDaniel, Carl McRae, Ruby Moore, Robert Raubach, Mary Sloan, Nicole Smith, Kristen Vincent, Cindy Saylor New Jersey: William Ditto, Celeste Andriot-Wood, Leroy Webster, Janet Gwiazda, Barbara Geiger-Parker, Judi Weinberger, Katherine Hempstead, Brian Fitzgibbons, Roy Lippin Ohio: Nancy Harry, Kristin Hidebrant, Julie Johnson, Carolyn Knight, Tim Tobin, Mel Borkan, Jim Downi, Sherri Lowe, Bill Crum, Suzanne Minnich Washington: Rosemary Biggins, Susan McDonnough, Gillian Maguire, Phil Jordan, Jan Navarre, Michael Valdivia, Civillia Hill, Kathy Bell

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Evaluating the HRSA Traumatic Brain Injury Program Contents     PREFACE   xix     EXECUTIVE SUMMARY   1 1   OVERVIEW OF THE HRSA TRAUMATIC BRAIN INJURY PROGRAM   17      Approach to the Study,   18      Organization of the Report,   20      Legislative Mandate for the HRSA TBI Program,   21      The HRSA TBI Program’s Place in the HRSA Bureaucracy,   25      Budget for the HRSA TBI Program,   25      Staffing for the HRSA TBI Program,   27      Grants Provided Under the HRSA TBI Program,   28      TBI State Grants Program,   28      Protection and Advocacy for TBI (PATBI) Program,   30 2   EPIDEMIOLOGY AND CONSEQUENCES OF TRAUMATIC BRAIN INJURY—AN INVISIBLE DISABILITY   33      Epidemiology of TBI,   34      TBI Incidence and Prevalence Estimates,   34      Causes of TBI,   36      Risk Factors for TBI,   37      Range in Severity,   41

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Evaluating the HRSA Traumatic Brain Injury Program List of Boxes, Figures, and Tables Executive Summary Boxes ES-1   The Quality and Coordination of Post-Acute TBI Service Systems,   3 ES-2   The Impact of HRSA’s TBI State Grants Program,   4 ES-3   The Impact of HRSA’s Protection and Advocacy for TBI (PATBI) Grants Program,   6 ES-4   Adequacy of the Management and Oversight of the HRSA TBI Program,   7 ES-5   Four Core Capacity Components of a State TBI Infrastructure,   8 Figure ES-1   Traumatic brain injury program grants by state, 2005,   13 Table ES-1   Number of States Participating in HRSA’s TBI State Grants Program, by Type of Grant, 2005,   13 Chapter 1 Boxes 1-1   Charge to the Committee on Traumatic Brain Injury,   19 1-2   Federal Initiatives Mandated by the Traumatic Brain Injury Act of 1996,   22 1-3   State-Based Protection and Advocacy (P&A) Systems for Individuals with Disabilities,   23

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Evaluating the HRSA Traumatic Brain Injury Program 1-4   TBI State Program Grants Awarded by HRSA on a Competitive Basis, 1997–2005,   29 1-5   Federal Statutory Guidance on the Use of TBI State Program Grants,   31 Figure 1-1   The HRSA TBI Program’s place in the HRSA bureaucracy, 2005,   24 Table 1-1   HRSA TBI Program Appropriations and Spending, FY 1997 to FY 2005,   26 Chapter 2 Boxes 2-1   TBI—The Invisible Disability,   34 2-2   TBI Among Veterans of the War in Iraq,   41 2-3   “Mild” TBI—Its Impact May Be Far from “Mild”,   42 2-4   Children with Traumatic Brain Injury,   46 Figures 2-1   Average annual number of TBI-related emergency department visits, hospitalizations, and deaths, U.S., 1995–2001,   36 2-2   Average annual TBI-related emergency department visits, hospitalizations, and deaths, percent by external cause, U.S. 1995–2001,   37 2-3   Average annual TBI-related rates for emergency department visits, hospitalizations, and deaths, by age group and external cause, U.S., 1995–2001,   39 2-4   Average annual TBI-related rates for emergency department visits, hospitalizations, and deaths, by age group and sex, U.S. 1995–2001,   40 2-5   Architecture of the brain,   45 Tables 2-1   TBI-Related Emergency Department Visits, Hospitalizations, and Deaths, Number and Percent by Age Group, U.S., 1995–2001,   38 2-2   Rate of TBI-Related Hospitalization, Emergency Department Visits, and Death, by Age, U.S., 1995–2001,   38 2-3   Constellation of Physical, Cognitive, and Behavior Changes After TBI,   44

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Evaluating the HRSA Traumatic Brain Injury Program Chapter 3 Boxes 3-1   One TBI Survivor’s Challenges in Obtaining Needed Services,   59 3-2   One TBI Survivor’s Journey from a Nursing Home to the Community,   60 3-3   A TBI Survivor’s Return to Work,   67 Figures 3-1   Continuum of needs post-traumatic brain injury,   60 3-2   Persistent need for services 1 year post-traumatic brain injury hospitalization,   62 3-3   Public and private systems serving persons with traumatic brain injury,   63 Tables 3-1   Types of Services Needed by Persons with TBI and Their Families,   64 3-2   Selected Government Programs Supporting Acute and Post-Acute Service Needs of Persons with TBI-Related Disabilities,   69 Chapter 4 Boxes 4-1   The Quality and Coordination of Post-Acute TBI Service Systems,   78 4-2   The Impact of HRSA’s State Grants Program,   79 4-3   Selected Comments from TBI Stakeholders in the Seven Study States on Their State’s TBI Infrastructure,   84 4-4   Selected Comments from TBI Stakeholders in the Seven Study States on Their State’s TBI Resources,   91 4-5   Special TBI Trust Funds in the States,   92 4-6   Selected Comments from TBI Stakeholders in the Seven Study States on Their State’s TBI Systems Improvement,   93 4-7   HRSA’s Review Criteria for Implementation Grants Under the TBI State Grants Program, 2006,   94 4-8   The Impact of HRSA’s Protection and Advocacy for TBI (PATBI) Grants Program,   96 4-9   Selected Comments from TBI Stakeholders in the Seven Study States on Their State’s P&A for TBI,   99 4-10   Adequacy of the Management and Oversight of the HRSA TBI Program,   100

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Evaluating the HRSA Traumatic Brain Injury Program Figure 4-1   TBI Program grants by state, 2005,   81 Tables 4-1   Number of States Participating in HRSA’s TBI State Grants Program, by Type of Grant, 2005,   82 4-2   Summary of the Four Core Components of TBI Infrastructure, by State, 2005,   83 4-3   Dedicated TBI Funding by State, 2005,   88 4-4   Examples of State TBI Program Accomplishments Reported by the Seven Study States, 1997–2005,   90 4-5   PATBI Grant Activities Reported by the Seven Study States, 2005,   97 Appendix A Box A-1   Agenda for IOM Workshop on Traumatic Brain Injury July 18, 2005,   108 Figures A-1   Linkages between the Federal TBI Program and other entities,   110 A-2   Interview respondent pool by organizational affiliation,   114 Tables A-1   The Committee’s Criteria for Selecting Seven States for an In-Depth Look,   111 A-2   Dedicated State Funding for TBI in the Seven States,   112 A-3   Participation in the Federal TBI Program by the Seven States,   112 A-4   Locus of the Lead State Agency for TBI in the Seven States,   113 A-5   Other Pertinent Characteristics of the Seven States,   113 Appendix C Tables C-1   Characteristics of State Traumatic Brain Injury (TBI) Programs by State, 2005,   128 C-2   Accomplishments of State Traumatic Brain Injury (TBI) Programs by State, 1997–2005,   176

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Evaluating the HRSA Traumatic Brain Injury Program C-3   State-Based Protection and Advocacy (P&A) Systems for Individuals with Developmental Disabilities: Goals and Accomplishments Related to P&A for Individuals with Traumatic Brain Injury (PATBI) by State, 2005,   210 Appendix D Tables D-1   Federal TBI Grants Received by Alabama,   262 D-2   Federal TBI Grants Received by California,   267 D-3   Federal TBI Grants Received by Colorado,   271 D-4   Federal TBI Grants Received by Georgia,   275 D-5   Federal TBI Grants Received by New Jersey,   279 D-6   Federal TBI Grants Received by Ohio,   283 D-7   Federal TBI Grants Received by Washington State,   287 Appendix E Figures E-1   TBI study respondents,   293 E-2   Respondents’ use of specific services, by type,   316 E-3   TBI TAC user ratings,   316 Tables E-1   HRSA TBI Grants Program History: State Award Years,   294 E-2   Post-Demonstration Grant Projects Funded in Sample States,   302 E-3   TBI Services and Systems Coordination in Study States,   306 E-4   Medicaid Waivers Serving Individuals with TBI in Study States,   307 E-5   TBI Trust Funds in Study States,   309

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Evaluating the HRSA Traumatic Brain Injury Program Preface Bumps or blows to the head are commonplace events in ordinary life. Fortunately they are often of small importance: an “ouch,” bruises, brief pain, or transient tears rather than something intractable and life changing. There are many instances, though, where traumatic brain injury (TBI) has lasting effects. Every day 4,000 individuals, on average, sustain an externally inflicted head injury in the United States. Among this very varied group—the child injured in the playground, passenger flung off motorcycle, driver of car hurled into windshield, someone slipping on ice or in the bath tub or falling downstairs, another surviving a ski accident, mugging, or gunshot wound, and many, many more—the injury may come to define their life: how it was before, and how it is afterward. More than five million people in the United States live with a disability as a result of brain injury. This report evaluates what is being done to improve services to this population and their families through a dedicated federal program of grants to states for traumatic brain injury. Coping with the effects of brain injury presents unique opportunities and problems for public and private initiative, as this report shows. TBI also presents a stark example of more general challenges to medicine and health care in the twenty-first century; notably, how to optimize rehabilitation, encourage care, achieve the best quality of life, and (not least) keep family members functioning in the face of long-term effects of injury or disease. Those effects may be behavioral, cognitive, social and economic, and include personality changes, memory problems, and loss of income,

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Evaluating the HRSA Traumatic Brain Injury Program jobs, or ability to learn. Much, if not all, of the responsibility and the costs fall on individuals and their families. The central organizational and policy questions in the federal-state programs addressed here involve consumer-centered and systems improvement approaches to change. How, for example, can individuals be helped to navigate their way through an otherwise disconnected array of possible services—which for an individual TBI survivor, family, and friends might include finding appropriate and affordable rehabilitation, neuropsychological and psychological testing, job and disability advice, behavioral training, advocacy and legal services, family and community support services, or applying for a Medicaid waiver? How can available federal and state programs relevant to TBI, which are scattered among different government agencies, be used more effectively? How can coordination be improved between public and private organizations? Congress authorized the federal TBI program under the TBI Act of 1996 (P.L. 104-166). Administration of the program resides in the Health Resources and Services Administration (HRSA), part of the U.S. Department of Health and Human Services. HRSA’s Maternal and Child Health Bureau has responsibility for the TBI program (though it applies to all members of the population, not just mothers and children); and the program was reauthorized under the Children’s Health Act of 2000 (P.L. 106-310). The Bureau’s objective for the program, as stated on its website, is: “Ensure that the estimated 5.3 million individuals and their families who live with the effects of TBI in the United States have access to comprehensive, coordinated systems of care that are person-centered and attend to their changing needs from the moment of injury throughout the rest of their lives.” Ringing words. In March 2005, HRSA asked the Institute of Medicine (IOM) to conduct an evaluation of the program. This is the report of the IOM committee set up to undertake the evaluation. To understand the scope and purposes of the program—and thus this report—it is useful to begin with a caveat or two. The committee was not charged with examining the diagnosis and treatment of individuals with acute brain injury in hospitals, emergency rooms, and other clinical settings, nor with evaluating the current state of clinical and basic neuroscience as these affect TBI, nor with considering prospects for acute treatment of head injury in the future. We were not charged to examine questions of head injury prevention. Such issues fall outside the responsibility of the HRSA TBI program. The committee is aware, for example, that exciting and important advances in diagnosis and treatment may result from current research in neuroscience that might decrease the extent of permanent injury and long-term disability for at least some individuals. Let us hope that better pharmacological and behavioral (or mixed) approaches to the acute phase of traumatic brain injury will become available through encourage-

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Evaluating the HRSA Traumatic Brain Injury Program ment of basic, clinical, and behavioral research—and eventually made readily accessible to patients. But now is now. This report deals with the realities of patients and their families in the light of the knowledge, practices, and experiences of today. Three other observations about the program should be made here as preface to the report. The first, if perhaps most mundane aspect of the federal TBI program is that it is, in dollar terms, quite small. Its budget was approximately $9 million in fiscal 2005. This includes grants to states, awarded on a competitive basis; a contract for technical assistance to the states, including information about innovative state programs; and grants for protection and advocacy (P&A) services in the states along the lines of other forms of legal advocacy on behalf of disabled individuals. When divvied up, a particular state or P&A may (or may not) receive an amount in federal funds that is sufficient to cover the cost of one full-time employee. Acceptance of such funds signifies a duty—and a willingness—to improve TBI services beyond the capacity of the federal funds alone. A second characteristic of the TBI program is its focus on the states. The federal government provides seed money for organizational and systems change in, by, and through the states. Indeed there is only one professional director of the program with no other staff at the federal level. Federal requirements for grants to the states include four core components, which we describe in the report. Suffice it to say here that states have to (1) set up a statewide TBI advisory board representing public interests and private organizations (such as the state brain injury association, typically an affiliate of the Brain Injury Association of America, the major organization representing TBI patients and their families); (2) designate a single state agency (their choice of which agency) as the lead agency for TBI activities under the grant; (3) conduct a needs and resources assessment for the state (approaches may vary); and (4) write a state action plan (again in a format chosen by the state). Apart from these core components, states are relatively free to develop programs as they think fit, in the light of the specific historical, economic, and political contexts of each state, and the presence or absence of strong program leadership. While not specifically stated this way, the Federal TBI Program challenged each state to be entrepreneurial, each in its own way. A member of our committee put the goal succinctly: “To make something out of nothing.” A third observation, common to traumatic brain injury in general but of great interest to the committee in making its evaluation, is the degree to which there are few standardized measures of TBI status, recovery trajectories, actual use of services (and which services) by individuals, or long-term outcomes. Basic statistics are incomplete on how many individuals there are across the states who suffer at any given time from the effects of a brain injury. Assessing patient or client data was not part of the committee’s

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Evaluating the HRSA Traumatic Brain Injury Program charge, which was to evaluate and recommend improvement in the federal TBI program. We do point out, though, that there is a need, outside of this study, for federal, state, and private research agencies to encourage scientific research studies, establish scientific consensus on standards, and provide better data systems for TBI than now exist. Assessing the impact of the program on how states are working or failing to work in support of individuals with TBI was, however, part of our charge. In an ideal world we might present statistical data showing utilization and service trends in the states, based on scientifically grounded patient or client data, both before and after the implementation of the federal TBI program. Even if such data were generally available, though, they might be difficult to interpret as part of our evaluation. In order to address HRSA’s goals for the TBI program we would need to know which services these were, who received them (and who not), whether they did any good or were appropriate to need, who paid for them and whether they were cost effective, and whether services as a whole were coordinated so as to provide the best possible care to the individual. HRSA’s goals are not about volume but organization. They include improving state and local capability; using existing research-based knowledge, state-of-the-art systems development approaches, and drawing on promising program innovations; and generating support from local and private sources, as well as legislative, regulatory, and policy changes in the states, so as to achieve sustainable support for services for individuals with TBI and their families, and the incorporation of such services into state service delivery systems. These are organizational and systems goals. To address our evaluation of the Federal TBI Program—modest in expenditures, large in purpose and practical in its goals—the IOM committee thus focused on organized responses to the program by the states. What have the states actually done? How and how well does the program work as implemented in different states? How far and in what ways has the program succeeded so far, or failed? Our conclusions are based on multiple sources, including a special study of experiences in seven states. I would like to extend my thanks to members of the committee. The committee has worked hard and diligently on a concentrated basis through face-to-face meetings and conference calls. The committee gives hearty thanks to Jill Eden, director of the study, and her staff at the Institute of Medicine, and to Holly Korda, the project’s consultant. This study is of a small federal program that has huge implications for individuals with traumatic brain injury and their families. It is in some ways a study of hope: that the disparate collection of resources in the public and private sector (including for TBI the significant enterprise of volunteers) can be harnessed for the good of neighbors, families, friends, or ourselves if any

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Evaluating the HRSA Traumatic Brain Injury Program of us suffers a traumatic brain injury, maybe by just crossing the wrong street. There is remarkable commitment to this hope across the states. In contrast, systems change is difficult and slow, hobbled by the dead weight of inertia or the clash of bureaucratic cultures. TBI agendas can easily be ignored without the efforts of energetic, effective leaders in the public and/or private sector. Nevertheless, making systems work, town by town and state by state, is a necessary, commonsense key to service innovation and improvement. In the case of TBI this requires government agencies to work together and as partners with private individuals, organizations, and communities. Rosemary A. Stevens Chair

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