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Institute of Medicine (US) Committee on Disability in America; Field MJ, Jette AM, editors. The Future of Disability in America. Washington (DC): National Academies Press (US); 2007.
Alan M. Jette, Ph.D., M.P.H., P.T. (Chair), directs the Health and Disability Research Institute at Boston University. He also serves as a professor of health policy and management at Boston University’s School of Public Health. He was a member of the Institute of Medicine committee to review the Social Security Administration’s disability decision process research (1998 to 2002), which conducted several workshops and produced several reports. His research emphases include late-life exercise; evaluation of treatment outcomes; and the measurement, epidemiology, and prevention of late-life disability. He has published more than 125 articles on these topics in the rehabilitation, geriatrics, and public health literature.
Elena M. Andresen, Ph.D., is a professor and chief of the Epidemiology Division, Department of Health Services Research, Management & Policy, at the University of Florida Health Sciences Center. She served on an Institute of Medicine committee tasked with developing an agenda for health outcomes research for elderly people and was a member of the Healthy People with Disabilities 2010 work group. With more than 60 publications, Dr. Andresen’s training and interests include health services research and the epidemiology of chronic disease. She has developed and taught graduatelevel courses in disability and health. Her funded research includes topics on disability epidemiology, aging, and surveillance measures of health for use in policy and planning. Dr. Andresen is a member of the Society for Epidemiologic Research, the International Society for Quality of Life Research, the Academy for Health Services Research and Policy, the American College of Epidemiology, and the American Public Health Association.
Michael Chernew, Ph.D., is a professor in the Department of Health Care Policy at Harvard Medical School. One major area of Dr. Chernew’s research focuses on assessing the impact of managed care on the health care marketplace, with an emphasis on examining the impact of managed care on health care cost growth and on the use of medical technology. He recently served on technical advisory panels for the Centers for Medicare and Medicaid Services that reviewed the assumptions used by Medicare actuaries to assess the financial status of the Medicare trust funds. In 1998, he was awarded the John D. Thompson Prize for Young Investigators by the Association of University Programs in Public Health. In 1999, he received the Alice S. Hersh Young Investigator Award from the Association of Health Services Research. Dr. Chernew is a research associate of the National Bureau of Economic Research, and he is on the editorial boards of Health Services Research, Health Affairs, and Medical Care Research and Review. His recent research has examined the economics of home health care and the growth of health care expenditures among Medicare beneficiaries with disabilities.
Dudley S. Childress, Ph.D., is a professor of biomedical engineering and of physical medicine and rehabilitation in the McCormick School of Engineering and the Feinberg School of Medicine, Northwestern University. He is director of the Northwestern University Rehabilitation Engineering Program and the Northwestern University Prosthetics Research Laboratory and is executive director of the Northwestern University Prosthetics and Orthotics Education Program. He is a member of the Institute of Medicine and served on the Committee on Assessing Rehabilitation Science and Engineering. Dr. Childress is the recipient of numerous honors and awards, including the Missouri Honor Award for Distinguished Service in Engineering and the Magnuson Award. He serves on the editorial board of the Journal of Rehabilitation Research and Development and has been a member of the Advisory Board, National Center for Medical Rehabilitation Research of the National Institutes of Health, and the National Research Advisory Council of the U.S. Department of Veterans Affairs. His research and development activities are concentrated in the areas of biomechanics; human walking; artificial limbs; ambulation aids; and rehabilitation engineering, which involves the design and development of modern technological systems for amputees and other people with disabilities.
Vicki A. Freedman, Ph.D., is a professor of health systems and policy at the University of Medicine and Dentistry of New Jersey’s School of Public Health. Dr. Freedman is a demographer and chronic disease epidemiologist with expertise in the measurement of disabilities in older populations. She has published extensively on the topics of population aging, disability, and long-term care, including several widely publicized articles on trends in late-life functioning. Her current research emphasizes interventions that can be used to prevent late-life disability decline, the socioeconomic and racial disparities in the incidence of late-life disabilities, the causes of latelife disability trends, and the role of assistive technology in ameliorating disability. She has served on more than a dozen national advisory panels for federal agencies, including the National Institute on Aging and the U.S. Department of Health and Human Services.
Patricia Hicks, M.D., is an associate professor in the Division of General Pediatrics in the Department of Pediatrics at the University of Texas Southwestern Medical School at Dallas and adjunct professor of law at Southern Methodist University. She is the director of the Residents’ Continuity of Care Clinic in the residency training program, where she teaches residents and also cares for children with complex chronic health conditions and counsels and advises their families. Her teaching responsibilities include clinical ethics and a course in law, literature, and medicine. As a member of the hospital’s Information Systems Committee, she is involved with projects related to electronic medical records and database organization and design for research, reporting, clinical decision support, and monitoring.
Lisa I. Iezzoni, M.D., M.Sc., is a professor of medicine at Harvard Medical School and associate director of the Institute for Health Policy, Massachusetts General Hospital. She is a member of the Institute of Medicine and has served on the Committee to Evaluate Measures of Health Benefits for Environmental, Health, and Safety Regulation; the Committee on Identifying Priority Areas for Quality Improvement; the Committee on Multiple Sclerosis; the Institutional Review Board Committee; and the Committee to Advise the National Library of Medicine on Information Center Services. Dr. Iezzoni has conducted numerous studies for the Agency for Healthcare Research and Quality, the Centers for Medicare and Medicaid Services, and private foundations on a variety of topics, including methods for predicting costs, clinical outcomes, and quality of care. She has worked extensively on risk adjustment and has edited Risk Adjustment for Measuring Health Care Outcomes, now in its third edition (2003). She now studies health care quality and policy issues relating to people with disabilities, publishing When Walking Fails in 2003 and More Than Ramps: A Guide to Improving Health Care Quality and Access for People with Disabilities, coauthored with Bonnie L. O’Day, in 2006.
June Isaacson Kailes, M.S.W., L.C.S.W., is a disability policy consultant and serves as Associate Director and Adjunct Associate Professor at the Center for Disability Issues and the Health Professions at the Western University of Health Sciences. Her work focuses on health-related disability and aging issues as well as emergency plannng and response. Ms. Kailes works with a variety of managed care projects and government-related research projects as a consultant, trainer, writer, researcher, and policy analyst. These projects have included work with the Rehabilitation Research and Training Centers on Aging with a Disability, the National Center on Physical Activity and Disability, and the Rehabilitation Engineering Research Center on Accessible Medical Instrumentation. She teaches “Disability Competency in the Health Professions,” an introductory course on disability issues for health professionals. It covers disability demographics, etiquette and communication, medical and social models of disability, quality of life, risk factors for disability, secondary conditions, compliance with the Americans with Disabilities Act, and other major disability-related public policy and ethical issues. As a presidential appointee to the United States Access Board from 1995 to 2003, Ms. Kailes served as its chair and vice chair. She is a frequent speaker at conferences, workshops, and seminars and has published widely on disability-related topics.
Laura Mosqueda, M.D., is a board-certified geriatrician and family physician. She is the director of geriatrics at the University of California, Irvine (UCI), School of Medicine, where she is also a professor of family medicine and holds the Ronald W. Reagan Endowed Chair in Geriatrics. As the director of geriatrics, she oversees both clinical and academic programs, including clinical care for seniors and adults with disabilities, research projects and grants, the education of health care professionals, and community outreach. In the clinical setting, Dr. Mosqueda implemented a multidisciplinary health assessment program for seniors and adults with disabilities and was instrumental in the development of the UCI Senior Health Center (SHC), an outpatient setting that caters to the special needs of seniors and adults with disabilities. As the medical director of SHC, she has an outpatient clinical practice specifically for seniors and adults with disabilities. For more than 10 years she was involved with the Rehabilitation Research and Training Center on Aging-Related Changes in Impairment for Persons Living with Physical Disabilities, a federally funded center headquartered at the Rancho Los Amigos Medical Center in Downey, California. Additional research activities include a study on osteoporosis in adults with cerebral palsy and, more recently, a primary care initiative to improve access to care for adults with disabilities. Dr. Mosqueda coedited and contributed to a textbook entitled Aging with a Disability: What the Clinician Needs to Know (Johns Hopkins University Press, 2004). She is the founder of the Elder Abuse Forensic Center, which focuses on the abuse of elders and adults with disabilities. Areas of special interest include aging with a disability, dementia, abuse, and bioethics.
P. Hunter Peckham, Ph.D., is a professor of biomedical engineering and orthopedics at Case Western Reserve University. He also serves as director of the Functional Electrical Stimulation Center at the Louis Stokes Veterans Affairs Medical Center and director of orthopedic research for the Rehabilitation Engineering Center at MetroHealth Medical Center. He is a member of the National Academy of Engineering and serves on the Committee on Spinal Cord Injury: Strategies in a Search for a Cure. He is an expert in the areas of neural prostheses and the use of electrical stimulation of nerves to restore function in cases of central nervous system paralysis and holds multiple patents related to his work. Dr. Peckham is the recipient of numerous honors and awards for his innovative research, including the Paul B. Magnuson Award and the Food and Drug Administration Commissioner’s Special Citation. In 2000, he was elected Engineer of the Year by Design News. In 1996–1997, he chaired the National Institutes of Health National Advisory Board to the National Center for Medical Rehabilitation Research.
James Marc Perrin, M.D., is director of the Division of General Pediatrics at the Massachusetts General Hospital for Children and the Massachusetts General Hospital Center for Child and Adolescent Health Policy and is a professor of pediatrics at Harvard Medical School. He has served on four Institute of Medicine committees, including the Committee on the Evaluation of Selected Federal Health Care Quality Activities, the Committee on Improving Quality in Long-Term Care, the Committee on Home-Based and Long-Term Care and Quality, and the Workshop on Maternal and Child Health Under Health Care Reform. For the American Academy of Pediatrics, Dr. Perrin chaired the Committee on Children with Disabilities and a committee to develop a practice guideline for attention deficit hyperactivity disorder. He is past president of the Ambulatory Pediatric Association (APA) and founding editor of the APA journal, Ambulatory Pediatrics. Dr. Perrin was a member of the Health Care Technology study section of the Agency for Health Care Policy and Research, the National Advisory Council for the Agency for Healthcare Research and Quality, and the National Commission on Childhood Disability. He has also served as a consultant to the Social Security Administration on children’s disability issues. He directs the Massachusetts General Hospital coordinating center for the Autism Treatment Network. His research has examined asthma, middle-ear disease, children’s hospitalization, and childhood chronic illness and disabilities.
Margaret A. Turk, M.D., is a professor of physical medicine and rehabilitation at the State University of New York Upstate Medical University at Syracuse, with a joint appointment in the Department of Pediatrics. She is also medical director of rehabilitation services at St. Camillus Health and Rehabilitation Center. Dr. Turk serves as chair of the American Board of Physical Medicine and Rehabilitation. In addition to her clinical and administrative responsibilities, Dr. Turk is involved in rehabilitation research and has been funded by the Centers for Disease Control and Prevention over a 10-year period for projects related to secondary conditions of and health promotion for people with disabilities. Her publications and national and international presentations have been on pediatric rehabilitation, pediatric electrodiagnosis, tone management, adults with cerebral palsy, secondary conditions, health promotion in disability, and the health of women with disabilities. She participates with the New York State Department of Health Disability Prevention Program Working Group on Secondary Conditions, which she cochairs. She received the United Cerebral Palsy Research and Educational Foundation Isabelle and Leonard Goldenson Technology and Rehabilitation Award in 2004. She was recently appointed to the National Advisory Board on Medical Rehabilitation Research at the National Institutes of Health. She was a member of the Institute of Medicine committee that developed the report Enabling America: Assessing the Role of Rehabilitation Science and Engineering (National Academy Press, 1997).
Gregg Vanderheiden, Ph.D., is a professor of industrial engineering (human factors) at the University of Wisconsin–Madison. He directs the Trace Research and Development Center, which focuses on making standard information technologies and telecommunications systems more accessible and usable by people with disabilities. The Center has two Rehabilitation Engineering Research Center (RERC) grants from the National Institute for Disability and Rehabilitation Research (one for the Universal Interface and Information Technology Access RERC and the other for the Telecommunications Access RERC). Dr. Vanderheiden has worked with the computer industry to develop and build disability access features directly into their standard products. Interface features from Dr. Vanderheiden’s research group are built into the MacOS, X-Windows for Unix, OS/2, and Microsoft Windows 95 through Vista operating systems. His work can also be found in the U.S. Postal Service’s Automated Postal Systems and the new Phoenix Airport cross-disability accessible information and paging system. His research interests focus on technology, human disability, and aging and include such specific topics as ergonomics, universal design, rehabilitation engineering, computer interface design, and augmentation of human functional capacities. He studies and develops standards for access to Web-based technologies, operating systems, and telecommunication systems. He served on the Toward an Every-Citizen Interface to the Nation’s Information Infrastructure Steering Committee of the National Research Council.
John Whyte, M.D., Ph.D., is a physiatrist and experimental psychologist specializing in traumatic brain injury rehabilitation. He directs the Moss Rehabilitation Research Institute and is a professor of rehabilitation medicine at Thomas Jefferson University in Philadelphia. His research focuses on recovery from prolonged unconsciousness and attention deficits that result from traumatic brain injury. In addition, he has a long-standing interest in the special methodological challenges presented by rehabilitation research topics, including the definition of rehabilitation treatments and the measurement of treatment effects. His research has been funded by the National Institutes of Health (NIH), the National Institute on Disability and Rehabilitation Research, the Department of the Army, and a number of private foundations. He is the incoming president of the Association of Academic Physiatrists, former chair of the National Center for Medical Rehabilitation Research’s Advisory Board, and principal investigator and program director for the Rehabilitation Medicine Scientist Training Program, an NIH-funded program to train physiatric researchers. He is the 2002 winner of the William Fields Caveness Award from the Brain Injury Association of America.
IOM Study Staff
Marilyn J. Field, Ph.D., study director, is a senior program officer at the Institute of Medicine (IOM). Her recent projects at IOM have examined postmarket surveillance of pediatric medical devices and clinical research involving children. Among earlier projects, she has directed three studies of the development and use of clinical practice guidelines, two studies of palliative and end-of-life care, and congressionally requested studies of employment-based health insurance and Medicare coverage of preventive and other services. Past positions include associate director of the Physician Payment Review Commission, executive director for Health Benefits Management at the Blue Cross and Blue Shield Association, and assistant professor of public administration at the Maxwell School of Citizenship and Public Affairs, Syracuse University. Her doctorate in political science is from the University of Michigan, Ann Arbor.
Afrah J. Ali is a senior program assistant at the Institute of Medicine. Prior to joining the Board on Health Sciences Policy, she held short-term positions in the National Academies’ marketing and development departments and studied biology at Howard University. Ms. Ali has 7 years of integrated project management, executive administration, publishing, event planning, research, and marketing experience. Her previous positions include marketing specialist at Standard and Poor’s E-marketing division in New York City.
Franklin Branch is a research assistant for the Board on Health Sciences Policy. Prior to joining the Institute of Medicine, he worked for the Adolescent Health Research Group at Johns Hopkins University and at the American Association of People with Disabilities. Mr. Branch graduated with a B.A. in psychology from the University of Michigan, Ann Arbor.
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