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Workshop on Disability in america A new look: Summary and background papers P Biographical Sketches of Workshop Committee and Workshop Presenters* Alan M. Jette, Ph.D., M.P.H., P.T. (Committee Chair), directs the Health and Disability Research Institute at Boston University. He also serves as professor of rehabilitation sciences at Boston University’s Sargent College of Health & Rehabilitation Sciences and professor of social and behavioral sciences 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 produced several workshops and 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 Andresen, Ph.D., is professor and chief of the Epidemiology Division, Department of Health Services Research, Management & Policy at the University of Florida Health Sciences Center and is also Research Health * Following the workshop and with the initiation of the second phase of the disability study, additional members were appointed to the committee: Michael Chernew, Ph.D., professor of health management and policy, School of Public Health, University of Michigan; Margaret A. Turk, M.D., professor of physical medicine & rehabilitation, State University of New York Upstate Medical University at Syracuse; Gregg Vanderheiden, Ph.D., professor of industrial and biomedical engineering and director, Trace Research and Development Center, University of Wisconsin at Madison; and John Whyte, M.D., Ph.D., director, Moss Rehabilitation Research Institute, Philadelphia.
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Workshop on Disability in america A new look: Summary and background papers Scientist at the Rehabilitation Outcomes Center of Excellence at the North Florida/South Georgia Veterans Health System. 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 chronic disease epidemiology. She has developed and taught graduate-level courses in disability and health. Her funded research includes topics in 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. Dudley S. Childress, Ph.D., is 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 executive director of the Northwestern University Prosthetics and Orthotics Education Program. He is a member of the Institute of Medicine and served with 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 includes the design and development of modern technological systems for amputees and other disabled people. Vicki A. Freedman, Ph.D., is 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 disability measurement 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 for the promotion of late-life disability decline, the socioeconomic and the racial disparities and causes of late-life disability trends, and the role of assistive technol-
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Workshop on Disability in america A new look: Summary and background papers ogy 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 assistant professor in the Division of General Academic 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. Many of these children and families depend on medical devices. 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, and clinical decision support and monitoring. Dr. Hicks is also the mother of a son who relies on a varying array of life-sustaining medical devices that he uses at home and at school. Lisa I. Iezzoni, M.D., M.Sc., is professor of medicine at Harvard Medical School and codirector of research in the Division of General Medicine and Primary Care, Department of Medicine, at Beth Israel Deaconess Medical Center in Boston. 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 and is on the board of directors of the National Quality Forum and serves on the editorial boards of major medical and health services research journals. A 1996 recipient of the Investigator Award in Health Policy Research from The Robert Wood Johnson Foundation, she is studying disability policy issues relating to mobility impairments. Dr. Iezzoni has published a textbook on risk adjustment for measuring health care outcomes and has conducted numerous studies for the Agency for Healthcare Research and Quality, the agency responsible for the Medicare program, and private foundations on a variety of topics. Her research interests include risk adjustment for measuring health care outcomes; developing and evaluating methods for assessing quality of care; and examining the personal and societal implications of disability, specifically, difficulty walking. June Isaacson Kailes, M.S.W., L.C.S.W., is an adjunct professor and associate director at the Center for Disability Issues and the Health Professions,
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Workshop on Disability in america A new look: Summary and background papers Western University of Health Sciences. She is a disability rights advocate and is a national leader in the independent living movement. As a presidential appointee to the United States Access Board from 1995 to 2003, she served as its chair and vice chair. She also chaired the Committee on Telecommunication as well as served as the Board’s liaison to the Telecommunication Access Advisory Committee and the Passenger Vessels Access Advisory Committee. Additionally, Ms. Kailes has held many offices on the boards of the National Council for Independent Living and the California Coalition of Independent Living Centers. With over 30 years of experience, she consults and trains managed care organizations, businesses, universities, state associations, government entities, centers for independent living, and other not-for-profit organizations. 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 the Ronald W. Reagan Endowed Chair in Geriatrics. As the director of geriatrics, she oversees both clinical and academic programs that include clinical care for seniors and adults with disabilities, research projects and grants, 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 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 professor of biomedical engineering and orthopedics at Case Western Reserve University. He also serves as director for the Functional Electrical Stimulation Center at the Louis Stokes Veterans Affairs Medical Center and director of orthopaedic research for the Reha-
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Workshop on Disability in america A new look: Summary and background papers bilitation 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 U.S. 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 (MGH) for Children and the MGH Center for Child and Adolescent Health Policy and 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 the Quality of Long-Term Care Services in Home and Community-Based Settings, 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 Healthcare Policy and Research, the National Advisory Council for the Agency for Healthcare Research and Quality, and the National Commission on Childhood Disability. He directs the MGH coordinating center for the Autism Treatment Network. His research has examined asthma, middle ear disease, children’s hospitalization, and childhood chronic illness and disabilities. WORKSHOP PRESENTERS Jay Bhattacharya, M.D., Ph.D., is an assistant professor at the Center for Primary Care and Outcomes Research. Dr. Bhattacharya received both an M.D. degree and a Ph.D. degree in economics from Stanford University, the former in 1997 and the latter in 2000. Dr. Bhattacharya’s research interests focus on the importance of insurance markets to the well-being of vulnerable populations. A primary focus of Dr. Bhattacharya’s research is the population of individuals with limitations in activities of daily living. His
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Workshop on Disability in america A new look: Summary and background papers work has shown rising levels of disability among adult nonelderly populations in the United States over the past two decades. In related work, Dr. Bhattacharya, along with his colleagues at RAND and Stanford University, have developed a sophisticated demographic model to forecast Medicare expenditures and the demand for long-term care. This Future Elderly Model accounts for changing life expectancy, trends in disability in younger and older populations, trends in chronic disease, and technological changes William A. Bauman, M.D., is professor of medicine at the Mount Sinai School of Medicine, New York, New York, with a secondary appointment in rehabilitation medicine, and is a staff physician at the Veterans Affairs (VA) Medical Center, Bronx, New York. He is board certified in internal medicine, with a subspecialty in endocrinology and metabolism. In the 1980s, he received a career development award from the U.S. Department of Veterans Affairs, under the mentorship of Rosalyn S. Yalow, Ph.D., Nobel Laureate in Physiology or Medicine. In 1989, he established and remains director of the Spinal Cord Damage Research Center at the Mount Sinai School of Medicine, with research activities at the VA Medical Center, Bronx, New York. Under his guidance, clinician-investigators and scientists have been studying the secondary disabilities of spinal cord injuries. The varied and numerous contributions of this unit have been recognized at the national and international levels. In 2001, the VA Rehabilitation Research & Development Center of Excellence for the Medical Consequences of Spinal Cord Injury was awarded to Dr. Bauman and his associates. He has been active in the programs of the Spinal Cord Injury Model System of National Institute on Disability and Rehabilitation Research, U.S. Department of Education, at several medical centers, including the Mount Sinai School of Medicine, the Kessler Institute of Rehabilitation, the Rancho Los Amigos National Rehabilitation Hospital, and the University of Miami. Dr. Bauman is chairman of a U.S. Department of Veterans Affairs cooperative study entitled Anabolic Therapy on Pressure Ulcer Healing in Persons with Spinal Cord Injury. He has served on the boards of directors for the American Paraplegia Society and the American Spinal Injury Association. He is on the editorial boards of Advances in Skin and Wound Care and the Journal of Rehabilitation Research & Development. In 2002, he has received the Excellence Award from the American Paraplegia Society. Dr. Bauman has chaired the U.S. Department of Veterans Affairs Merit Review study section on spinal cord injury. Vicki A. Freedman, Ph.D. (see IOM committee biography). Jack Guralnik, M.D., Ph.D., is acting chief of the intramural Laboratory of Epidemiology, Demography and Biometry at the National Institute on Ag-
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Workshop on Disability in america A new look: Summary and background papers ing. He attended medical school in Philadelphia, and after receiving training in internal medicine at Georgetown University, he spent several years practicing medicine in community and public health clinics. He obtained an M.P.H. degree from the University of California, Berkeley, in 1982 and a Ph.D. in epidemiology in 1985. He is board certified in public health and general preventive medicine. He has been in the intramural epidemiology research program at the National Institute on Aging since 1985. His primary areas of interest in the epidemiology of aging include the study of physical functioning and disability, the prevalence and impact of multiple coexisting chronic conditions, factors associated with healthy aging, methods of assessment of health and functional status, and trends in the demographic and health status characteristics of the older population. He has published more than 325 journal articles and book chapters in these areas of aging research and has taught and lectured extensively in the United States and abroad. June Isaacson Kailes, M.S.W., L.C.S.W. (see IOM committee biography). Bryan J. Kemp, Ph.D., obtained a Ph.D. in clinical psychology and aging from the University of Southern California in 1971. He has worked in the fields of aging, rehabilitation, and mental health for more than 30 years and currently holds several related positions. At Rancho Los Amigos National Rehabilitation Center, he is director of Gerontology Outpatient Programs and director of the federally funded Rehabilitation Research and Training Center on Aging with a Disability. At the University of California at Irvine (UCI), Dr. Kemp is professor of medicine and psychology in the Program in Geriatrics. He is also the clinical psychologist on the Elder Abuse Forensic Center at UCI. He is the author of more than 150 articles, chapters, books, and invited lectures on aging-related issues, including the recently published text Aging with a Disability: What the Clinician Needs to Know. His areas of interest are aging with disability, geriatric depression, quality of life, and elder abuse. Julie Keysor, Ph.D., P.T., is an assistant professor of physical therapy at the Sargent College of Health and Rehabilitation Sciences, Boston University. She received a doctorate in health behavior and health education from the University of North Carolina. She has master of science and bachelor of science degrees in physical therapy. Dr. Keysor’s area of research is in preventing and minimizing disability among individuals with chronic functional limitations, with an emphasis on understanding the environmental determinants of disability as well as the personal motivational determinants of disability.
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Workshop on Disability in america A new look: Summary and background papers John Reiss, Ph.D., is chief of the Division of Policy and Program Affairs, Institute for Child Health Policy; and associate professor in the Department of Pediatrics, University of Florida, Gainesville. Dr. Reiss, who is a counseling psychologist by training, has focused much of his time and effort on facilitating collaborative action among public- and private-sector organizations at the federal, regional, and state levels and between families and professionals to improve the organization, financing, and delivery of health care for children and youth with special health care needs and to promote full partnership with families. From 1993 to 2003 he directed a series of Maternal and Child Health Bureau (MCHB)-funded projects that provided training and technical assistance to Title V Children with Special Health Care Needs (CSHCN) Program staff and other key stakeholders through yearly CSHCN Leadership Training Institutes; Tri-Regional Meetings; e-mail listservs; and web-based, video, and print materials. In 1998, Dr. Reiss began his work on the issue of health care transition. Currently, Dr. Reiss is the principal investigator for three health care transition projects: a 5-year National Institute on Disability and Rehabilitation Research (NIDRR)-funded research and training project on the transition of youth with special health needs from child-centered (pediatric) to adult-oriented health care; a 3-year contract from the Florida Title V CSHCN Program (Children’s Medical Services) to develop a web-based health care transition training curriculum for program staff; and a contract from the Florida Developmental Disabilities Council to develop web-based health care transition training materials for families and youth. Through the NIDRR grant, Dr. Reiss also moderates a special-interest e-mail discussion group, which has more than 2,000 members internationally. James H. Rimmer, Ph.D., is a professor in the Department of Disability and Human Development, College of Applied Health Sciences, University of Illinois at Chicago. For the past 25 years, Dr. Rimmer has been developing and directing health promotion programs for people with disabilities. He has published more than 70 peer-reviewed journal articles and book chapters on various topics in health promotion, physical activity, and disability. He is the director of two federally funded centers, the National Center on Physical Activity and Disability (www.ncpad.org) and the Rehabilitation Engineering Research Center on Recreational Technology and Exercise Physiology for Persons with Disabilities (www.rercrectech.org). Tom Seekins, Ph.D., is the director of the Research and Training Center on Disability in Rural Communities at the University of Montana and the director of research for the Rural Institute on Disabilities. He received a Ph.D. from the University of Kansas in 1983. He has been involved in disability research and service for more than 25 years, emphasizing issues of
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Workshop on Disability in america A new look: Summary and background papers consumer advocacy, rural health and disability, self-employment, independent living center services, rural transportation and housing, disability among American Indian tribes and reservations, and rural economic and community development. He has published extensively in the professional literature; presented reports of his work to numerous national, regional, state, and local organizations; and provided technical assistance to state and local programs. He has served as president of the American Association on Health and Disability and as president of the National Association of Rehabilitation Research and Training Centers. He is particularly interested in the intersection between disability and community development. Rune J. Simeonsson, Ph.D., M.S.P.H., is professor of education, Research Professor of Psychology, and a fellow at the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill. He also holds an appointment as adjunct professor in the Department of Psychiatry at Duke University. He is coordinator of the School Psychology Program and teaches graduate courses in psychological assessment and intervention, child development and disability and research design and analysis. His research interests reflect the intersection of child development, special education, and public health, focusing on issues in the assessment and classification of childhood disability and the promotion of child health and development. He is actively engaged in research and scholarship on human functioning and disability and currently serves as chair of a work group for the World Health Organization to develop a version of the International Classification of Functioning, Disability and Health for Children and Youth. Ruth E.K. Stein, M.D., is professor of pediatrics at the Albert Einstein College of Medicine and former vice chairman in the Department of Pediatrics at the Albert Einstein College of Medicine and Children’s Hospital at Montefiore. Her research on children’s health and children with chronic conditions has been supported by a number of federal agencies and private foundations. For more than a decade she was director and principal investigator of the National Institute of Mental Health-supported Preventive Intervention Research Center for Child Health at Albert Einstein College of Medicine/Montefiore Medical Center. She has published extensively on children with chronic conditions, the measurement of outcomes for child health, and mental health issues in primary care. She was a charter member of the board of directors and executive committee of the Center for Child Health of the American Academy of Pediatrics. She is the editor of two books: Caring for Children with Chronic Illness: Issues and Strategies and Health Care for Children: What’s Right What’s Wrong What’s Next. She is a member of the Board on Children, Youth, and Families of the National
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Workshop on Disability in america A new look: Summary and background papers Research Council and the Institute of Medicine and cochaired the Board’s Committee on the Evaluation of Child Health (which recently published Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health). Margaret A. Turk, M.D., is 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 the 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 individuals 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 individuals with disabilities, 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. She has served on the Medical Rehabilitation Research Subcommittee, National Institute of Child Health and Human Development, National Institutes of Health, and was chair of that subcommittee for 2 years. She participated in the Institute of Medicine report on rehabilitation science and engineering, Enabling America. Gale Whiteneck, Ph.D., has been the director of research at Craig Hospital in Englewood, Colorado, since 1986. He is principal investigator for three federal projects, including the Rocky Mountain Regional Spinal Injury System, the Rocky Mountain Regional Brain Injury System, and a collaborative study of mortality after traumatic brain injury. Major investigations focus on spinal cord injury and traumatic brain injury program evaluation, functional assessment, handicap-participation measurement, environmental impact assessments, long-term outcomes, aging, and the cost of lifetime care. He is the author of three books, numerous articles, and the Craig Handicap Assessment and Reporting Technique and the Craig Hospital Inventory of Environmental Factors, which are used in the national spinal cord injury and traumatic brain injury databases and other disability research. Dr. Whiteneck has been invited to present award lectures to the
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Workshop on Disability in america A new look: Summary and background papers American Congress of Rehabilitation Medicine, The American Paralysis Society, the International Society of Paraplegia, and the American Spinal Injury Association. He served as a consultant to the World Health Organization for the revision of the International Classification of Impairments, Disabilities and Handicaps and the development of the International Classification of Functioning, Disability and Health.
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Workshop on Disability in america A new look: Summary and background papers
Representative terms from entire chapter: