Disability Evaluation Study Design

First Interim Report

Gooloo S. Wunderlich and William D. Kalsbeek, Editors

Committee to Review the Social Security Administration's Disability Decision Process Research

Dorothy Rice, Chair

Division of Health Care Services

INSTITUTE OF MEDICINE

Committee on National Statistics

Commission on Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL

NATIONAL ACADEMY PRESS
Washington, D.C.
1997



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Disability Evaluation Study Design First Interim Report Gooloo S. Wunderlich and William D. Kalsbeek, Editors Committee to Review the Social Security Administration's Disability Decision Process Research Dorothy Rice, Chair Division of Health Care Services INSTITUTE OF MEDICINE Committee on National Statistics Commission on Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL NATIONAL ACADEMY PRESS Washington, D.C. 1997

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National Academy of Sciences 2101 Constitution Avenue, N.W. Washington, D.C. 20418 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 report has been reviewed by a group other than the authors according to procedures approved by a Report Review Committee consisting of members of the National Academy of Sciences, the National Academy of Engineering, and the Institute of 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. Bruce Alberts 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. William 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. Kenneth I. Shine 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. Bruce Alberts and Dr. William A. Wulf are chairman and vice chairman, respectively, of the National Research Council. The project that is the subject of this report is supported by Contract No. 600-96-27893 between the National Academy of Sciences and the Social Security Administration. 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 agency that provided support for this project. International Standard Book Number 0-309-05889-9. Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Box 285, Washington, D.C. 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP's home page at http://www.nap.edu. This report is also available via the Internet at http://www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at http://www2.nas.edu/iom. For more information about the Committee on National Statistics, visit the CNSTAT home page at http://www2.nas.edu/cnstat. Copyright 1997 by the National Academy of Sciences. All rights reserved. Printed in the United States of America.

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COMMITTEE TO REVIEW THE SOCIAL SECURITY ADMINISTRATION'S DISABILITY DECISION PROCESS RESEARCH DOROTHY P. RICE* Chair, Professor Emeritus, Department of Social and Behavioral Sciences, Institute for Health and Aging, University of California at San Francisco MONROE BERKOWITZ, Professor of Economics, Emeritus, and Director, Disability and Health Economics Research, Rutgers University, New Brunswick, New Jersey RONALD S. BROOKMEYER, Professor of Biostatistics, The Johns Hopkins University School of Hygiene and Public Health GERBEN DEJONG, Director, National Rehabilitation Hospital Research Center, and Professor of Family Medicine and Adjunct Professor, Georgetown University Institute of Public Policy, Washington, D.C. MARSHAL F. FOLSTEIN, Chairman and Professor of Psychiatry, Tufts University School of Medicine; and Psychiatrist-in-Chief, New England Medical Center, Boston DAVID B. GRAY, Professor and Associate Director for Research, Program in Occupational Therapy, Washington University School of Medicine ROBERT M. GROVES, Professor and Program Director, Survey Research Center of the University of Michigan at Ann Arbor, and Director of the Joint Program on Survey Methodology at the University of Maryland at College Park WILLIAM D. KALSBEEK, Professor of Biostatistics and Director, Survey Research Unit, University of North Carolina at Chapel Hill JERRY L. MASHAW, Sterling Professor of Law and Management and Professor, Institute for Social ant Policy Studies, Yale University CATHARINE C. MASLOW, Director, Initiative on Alzheimer's and Managed Care, Alzheimer's Association, Washington, D.C. DONALD L. PATRICK,* Professor of Health Services, University of Washington School of Public Health and Community Medicine HAROLD ALAN PINCUS, Deputy Medical Director and Director, Office of Research, American Psychiatric Association, Washington, D.C. JOHN A. SWETS,** Chief Scientist, Information Sciences, BBN Corporation, Cambridge, Massachusetts EDWARD H. YELIN, Professor of Medicine and Health Policy, Department of Medicine and Institute for Health Policy Studies, University of California at San Francisco Study Staff GOOLOO S. WUNDERLICH, Study Director KRISTEN N. ROBINSON, Program Officer MARGO L. CULLEN, Project/Research Assistant *   Member, Institute of Medicine. **   Member, National Academy of Sciences.

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BOARD ON HEALTH CARE SERVICES INSTITUTE OF MEDICINE DON E. DETMER Chair, Senior Vice President, The University of Virginia STUART H. ALTMAN, Sol C. Chaikin Professor of National Health Policy, The Florence Heller Graduate School for Social Policy, Brandeis University NANCY W. DICKEY, Private Practice, College Station, Texas ANNETINE C. GELIJNS, Associate Professor, Public Health and Surgery, Columbia University B. KEN GRAY, Corporate Medical Director, Metroplex Emergency Physician Associates, P.A., Dallas, Texas PAUL F. GRINER, Vice President and Director, Center for the Assessment and Management of Change in Academic Medicine, Association of American Medical Colleges, Washington, D.C. CLARK C. HAVIGHURST, William Neal Reynolds Professor of Law, Duke University School of Law BRENT C. JAMES, Executive Director, Institute for Health Care Delivery Research, and Vice President, Medical Research and Continuing Medical Education, Intermountain Health Care, Salt Lake City, Utah JACQUELINE KOSECOFF, President and Co-Chief Executive Officer, Value Health Sciences, Inc., Santa Monica, California SHEILA T. LEATHERMAN, Executive Vice President, Center for Health Care Policy and Evaluation, United Health Care Corporation, Minneapolis, Minnesota JOHN LUDDEN, Senior Vice President for Medical Affairs, Harvard Pilgrim Health Care, Brookline, Massachusetts BARBARA J. McNEIL, Ridley Watts Professor, Department of Health Care Policy, Harvard Medical School RUSSELL L. MILLER, State University of New York, Health Science Center, Brooklyn MILDRED MITCHELL-BATEMAN, Clinical Director, Huntington Hospital, Huntington, West Virginia MARY MUNDINGER, Dean and Centennial Professor in Health Policy, Columbia University UWE E. REINHARDT, James Madison Professor of Political Economy and Professor of Economics and Public Affairs, Princeton University MARY LEE SEIBERT, Acting Provost, Ithaca College STEPHEN M. SHORTELL, A.C. Buehler Distinguished Professor of Health Services Management and Professor of Organization Behavior, Kellogg Graduate School of Management, Northwestern University GAIL L. WARDEN, President and Chief Executive Officer, Henry Ford Health System, Detroit, Michigan CLYDE J. BEHNEY, Deputy Executive Officer and Director, Board on Health Care Services, IOM

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COMMITTEE ON NATIONAL STATISTICS NATIONAL RESEARCH COUNCIL NORMAN M. BRADBURN Chair, National Opinion Research Center, University of Chicago JULIE DaVANZO, RAND, Santa Monica, California WILLIAM F. EDDY, Department of Statistics, Carnegie Mellon University JOHN F. GEWEKE, Department of Economics, University of Minnesota, Minneapolis JOEL B. GREENHOUSE, Department of Statistics, Carnegie Mellon University ERIC A. HANUSHEK, W. Allen Wallis Institute of Political Economy and Department of Economics, University of Rochester RODERICK J.A. LITTLE, Department of Biostatistics, University of Michigan CHARLES F. MANSKI, Department of Economics, University of Wisconsin, Madison WILLIAM D. NORDHAUS, Department of Economics, Yale University JANET L. NORWOOD, The Urban Institute, Washington, D.C. EDWARD B. PERRIN, School of Public Health and Community Medicine, University of Washington PAUL R. ROSENBAUM, Department of Statistics, The Wharton School, University of Pennsylvania KEITH F. RUST, Statistical Group, Westat, Inc., Rockville, Maryland FRANCISCO J. SAMANIEGO, Division of Statistics, University of California at Davis MIRON L. STRAF, Director

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Contents 1   Introduction   1 2   Background   2     Statement of the Problem   2     SSA's Redesign Plan for Determining Program Eligibility   3 3   SSA'S Proposed Design for the Disability Evaluation Study   5     Information Goals of the DES   5     General Features of the DES Design   6     Sample Design   11     Analysis of Data from Existing National Surveys   14 4   Data Collection Plan   18     Screening Interview   18     Medical Examination   21     Miscellaneous Data Quality and Procedural Issues   24     Data Linkage with SSA Files and Confidentiality Issues   26 5   Concluding Comments   28     Recommendations   29     References   30     Appendix: Review of the Social Security Administration's Disability Decision Process Research   32     Acronyms and Abbreviations   33

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