THE DYNAMICS OF DISABILITY

MEASURING AND MONITORING DISABILITY FOR SOCIAL SECURITY PROGRAMS

Gooloo S. Wunderlich, Dorothy P. Rice, and Nicole L. Amado, Editors

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

Board on Health Care Services

INSTITUTE OF MEDICINE and

Committee on National Statistics

Division of Behavioral and Social Sciences and Education

NATIONAL RESEARCH COUNCIL

NATIONAL ACADEMY PRESS
Washington, D.C.



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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs THE DYNAMICS OF DISABILITY MEASURING AND MONITORING DISABILITY FOR SOCIAL SECURITY PROGRAMS Gooloo S. Wunderlich, Dorothy P. Rice, and Nicole L. Amado, Editors Committee to Review the Social Security Administration’s Disability Decision Process Research Board on Health Care Services INSTITUTE OF MEDICINE and Committee on National Statistics Division of Behavioral and Social Sciences and Education NATIONAL RESEARCH COUNCIL NATIONAL ACADEMY PRESS Washington, D.C.

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs NATIONAL ACADEMY PRESS 2101 Constitution Avenue, N.W. Washington, DC 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. Support for this project was provided by Contract No. 600-96-27893 between the National Academy of Sciences and the Social Security Administration. Support of the work of the Committee on National Statistics is provided by a consortium of federal agencies through a grant between the National Academy of Sciences and the National Science Foundation (Grant No. SBR-9709489). The views presented in this report are those of the Committee to Review the Social Security Administration’s Disability Decision Process Research and are not necessarily those of the funding agency. Library of Congress Cataloging-in-Publication Data The dynamics of disability : measuring and monitoring disability for Social Security programs / Gooloo S. Wunderlich, Dorothy P. Rice, and Nicole L. Amado, editors ; Committee to Review the Social Security Administration's Disability Review Process Research, Division of Health Care Services, Institute of Medicine and Committee on National Statistics, Division on Behavioral and Social Sciences and Education, National Research Council. p. ; cm. Includes bibliographical references and index. ISBN 0-309-08419-9 (hardcover) 1. Disability evaluation--United States. 2. Social security--United States. [DNLM: 1. Disability Evaluation--United States. 2. Eligibility Determination--methods--United States. 3. Social Security--United States. W 900 D997 2002] I. Wunderlich, Gooloo S. II. Rice, Dorothy P. III. Amado, Nicole L. IV. Institute of Medicine (U.S.). Committee to Review the Social Security Administration's Disability Decision Process Research. V. National Research Council (U.S.). Committee on National Statistics. RA1055.5 .D964 2002 2002009395 Additional copies of this report are available for sale from the National Academy Press, 2101 Constitution Avenue, N.W., Box 285, Washington, DC 20055. Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area), or visit the NAP’s home page at www.nap.edu. The full text of this report is available at www.nap.edu. For more information about the Institute of Medicine, visit the IOM home page at: www.iom.edu. For more information about the Committee on National Statistics, visit the CNSTAT home page at www2.nas.edu/cnstat. Copyright 2002 by the National Academy of Sciences. All rights reserved. Printed in the United States of America.

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs THE NATIONAL ACADEMIES National Academy of Sciences National Academy of Engineering Institute of Medicine National Research Council 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 M. 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. 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. Bruce M. Alberts and Dr. Wm. A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs 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 RONALD S. BROOKMEYER, Professor of Biostatistics, The Johns Hopkins University School of Hygiene and Public Health GERBEN DEJONG (until 3/9/00), Director, National Rehabilitation Hospital Research Center, and Professor of Family Medicine and Adjunct Professor, Georgetown University Institute of Public Policy MARSHAL F. FOLSTEIN, Chairman and Professor of Psychiatry, Tufts University School of Medicine; and Psychiatrist-in-Chief, New England Medical Center, Boston, Massachusetts DAVID B. GRAY (until 4/22/98), Professor and Associate Director for Research, Program in Occupational Therapy, Washington University School of Medicine ROBERT M. GROVES, Director, Survey Research Center of the University of Michigan at Ann Arbor and Senior Research Scientist, Joint Program in Survey Methodology, University of Maryland ALAN M. JETTE, Professor and Dean, Sargent College of Health and Rehabilitation Sciences, Boston University 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 and Policy Studies, Yale University CATHARINE C. MASLOW, Director, Initiatives on Managed Care and Acute Care, Alzheimer’s Association, Washington, D.C. DONALD L. PATRICK, Professor of Health Services and Director, Social and Behavioral Sciences Program, University of Washington School of Public Health and Community Medicine HAROLD A. PINCUS, Executive Vice Chairman, Department of Psychiatry, University of Pittsburgh School of Medicine and Senior Scientist, RAND, Pittsburgh, Pennsylvania JOHN A. SWETS (until 10/4/99), Chief Scientist, Information Sciences, BBN Technologies, Cambridge, Massachusetts

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs 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 NICOLE AMADO, Research Associate

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs BOARD ON HEALTH CARE SERVICES INSTITUTE OF MEDICINE DON E. DETMER (Chair), Dennis Gillings Professor of Health Management, The Judge Institute of Management Studies, University of Cambridge BARBARA J. McNEIL (Vice Chair), Ridley Watts Professor, Department of Health Care Policy, Harvard Medical School LINDA AIKEN, The Claire M. Fagin Leadership Professor of Nursing and Professor of Sociology, and Director of the Center for Health Outcomes and Policy Research, University of Pennsylvania HARRIS BERMAN, Chief Executive Officer, Tufts Health Plan, Waltham, Massachusetts BRIAN BILES, Professor, Department of Health Services Management and Policy, School of Public Health and Health Services, The George Washington University, Washington, DC J. LYLE BOOTMAN, Dean and Professor, College of Pharmacy and Executive Director, Center for Health Outcomes and PharmacoEconomics (HOPE) Research, Arizona Health Sciences Center, University of Arizona CHRISTINE CASSEL, Dean, School of Medicine and Vice President for Medical Affairs, Oregon Health Sciences University, Portland, Oregon PAUL D. CLAYTON, Medical Informaticist, Intermountain Health Care, Salt Lake City, Utah JACK C. EBELER, President and CEO, Alliance of Community Health Plans, Washington, DC DOUGLAS A. HASTINGS, President, American Health Lawyers Association, Washington, DC RUBY P. HEARN, Senior Vice President Emerita, Robert Wood Johnson Foundation, Princeton, New Jersey ROBERT L. JOHNSON, Professor of Pediatrics and Clinical Psychiatry and Director of Adolescent and Young Adult Medicine, University of Medicine and Dentistry of New Jersey, New Jersey Medical School SHEILA T. LEATHERMAN, Founder, The Center for Health Care Policy and Evaluation and Executive Vice President, UnitedHealth Group, Minneapolis, Minnesota SHOSHANNA SOFAER, Robert P. Luciano Professor of Health Care Policy, School of Public Affairs, Baruch College, New York, New York

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs DONALD STEINWACHS, Professor and Chair, Department of Health Policy and Management, Bloomberg School of Public Health, Johns Hopkins University, Baltimore, Maryland PAUL C. TANG, Medical Director, Clinical Informatics, Palo Alto Medical Foundation, Palo Alto, California JANET M. CORRIGAN, Director, Board on Health Care Services, IOM

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs COMMITTEE ON NATIONAL STATISTICS NATIONAL RESEARCH COUNCIL JOHN E. ROLPH (Chair), Marshall School of Business, University of Southern California JOSEPH G. ALTONJI, Department of Economics, Northwestern University ROBERT BELL, AT&T Laboratories, Florham Park, NJ LAWRENCE D. BROWN, Department of Statistics, University of Pennsylvania ROBERT M. GROVES, Survey Research Center, University of Michigan HERMANN HABERMANN, United Nations Statistics Division, New York, NY JOEL L. HOROWITZ, Department of Economics, Northwestern University WILLIAM D. KALSBEEK, Survey Research Unit, Department of Biostatistics, University of North Carolina ARLEEN LEIBOWITZ, Department of Policy Studies, University of California—Los Angeles School of Public Policy RODERICK J. A. LITTLE, School of Public Health, University of Michigan THOMAS A. LOUIS, The RAND Corporation, Arlington, VA DARYL PREGIBON, AT&T Laboratories-Research, Florham Park, NJ NORA CATE SCHAEFFER, Department of Sociology, University of Wisconsin—Madison MATTHEW D. SHAPIRO, Department of Economics, University of Michigan ANDREW WHITE, Director

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs Acknowledgments The Committee to Review the Social Security’s Disability Decision Process Research gratefully acknowledges the contributions of the many individuals and organizations over the course of six years, not all of whom can be individually listed here, who participated and gave generously of their time and knowledge to this study. Support for this study was provided by the Social Security Administration (SSA). Staff of SSA was helpful in providing information about the research projects undertaken relating to the disability decision process and the planning, development, and statistical design of the National Study of Health and Activity, the two principal study areas of the contract. We particularly wish to thank Scott Muller, Senior Economist, Office of Research Evaluation, and Statistics, who served as the SSA project officer throughout the duration of the study. We also acknowledge David Barnes and Rosanne Hanratty who served as co-project officers with Dr. Muller in the early years of the study. In addition we acknowledge the many federal and nonfederal government officials and those from the research and disability communities who gave expert presentations to the committee at its meetings and those who participated in the two large workshops organized by the committee. They are listed in Appendix A and B of this report. We are grateful to Elizabeth Badley, Alan Jette, Cille Kennedy, Nancy Mathiowetz, Laura Trupin, and Edward Yelin, the authors of the commissioned papers prepared for the study. These papers were used exten-

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs sively by staff and committee in drafting the report. These papers are included in Part II of the report. We acknowledge with gratitude the contributions of our consultant, Nancy Mathiowetz, Associate Professor at the University of Maryland’s Joint Program on Survey Methodology. Dr. Mathiowetz provided assistance and technical expertise to staff and the committee in organizing the workshop on Survey Measurement of Work Disability, co-editing the summary report of the workshop, and advising on dissemination of the report. She also authored two of the commissioned papers on statistical issues associated with survey measurement of disability and the various possible methods of obtaining continuing information on disability issues confronting SSA. We acknowledge the contributions of the IOM study staff to whom an important debt of gratitude is owed. The committee is especially grateful for the guidance and efforts of our study director, Gooloo S. Wunderlich, for the enormous contribution she made to the study. She had primary responsibility for organizing the deliberations of the committee and preparing the drafts of the study reports, tasks that she accomplished with considerable skill and tact. Gooloo’s professionalism, knowledge, and extraordinary commitment and perseverance were critical to resolving many policy and technical issues and completing the study. Nicole Amado served ably as a senior project assistant, research assistant, and more recently as research associate—at times simultaneously handling the functions of all three positions. Her excellent support and attention to detail were critical to the success of the final report. She independently developed all of the components required in IOM reports and reviewed and edited the various drafts of the report for accuracy and style under very tight deadlines. She researched and developed all the tables and figures in the report and reformatted all the tables in Part II of the report. The committee acknowledges the several other staff who assisted the committee at various times and in varying capacities over the six years of the study. Other IOM staff provided support and assistance to the study committee. The IOM Financial Associates helped keep our budget in order. The Staff of the Office of Reports and Communication handled the logistics of the reports review process and shepherded the reports through the editing and production process. Sally Stanfield at the National Academy Press was supportive and helpful as always for each of the six reports issued by the committee.

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs Finally, I would like to thank all the members of the committee for their generous contribution of time and expert knowledge to the deliberations and the preparation of the committee reports including this final report. Dorothy P. Rice, Chair Committee to Review the Social Security Disability Decision Process Research

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs Reviewers The report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise, in accordance with procedures approved by the National Research Council’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 the 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: Henry Aaron, Senior Fellow, Brookings Institution, Washington, D.C. Richard G. Frank, Professor, Harvard Medical School, Boston, Massachusetts David Gray, Researcher Professor, Washington University School of Medicine, St. Louis, Missouri Robert Haveman, Professor, University of Wisconsin—Madison Lisa Iezzoni, Professor of Medicine, Harvard Medical School, Boston, Massachusetts Corinne Kirchner, Director, Policy Research and Program Evaluation, American Foundation for the Blind, New York, New York James Morgan, Professor and Research Scientist Emeritus, University of Michigan Janet L. Norwood, Consultant, Chevy Chase, Maryland

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs 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 Edward B. Perrin, Professor Emeritus, University of Washington and Senior Scientist, VA Puget Sound Health Care System, appointed by the Institute of Medicine, and Joseph P. Newhouse, Professor, Harvard Medical School, appointed by the National Research Council’s Report Review Committee. 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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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs Contents SUMMARY   1 PART I:   REVIEW AND RECOMMENDATIONS     1   INTRODUCTION   17      Background,   18      Disability Determination—Structure and Process,   21      The National Academies Study,   26      Scope and Limitations,   29      Organization of the Report,   31 2   DYNAMICS OF SSA’S DISABILITY PROGRAMS   33      Historical Developments and Program Growth,   34      Factors Contributing to Recent Growth,   42      Conclusion,   51 3   CONCEPTUAL ISSUES IN DEFINING WORK DISABILITY   53      Concepts of Disability and Work Disability,   53      Major Schools of Thought,   56      Conclusion,   63

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs 4   SURVEY MEASUREMENT OF DISABILITY   65      The National Study of Health and Activity,   66      Needed Research in the Measurement of Disability in a Survey Context,   74      Future Surveys of Disability and Work,   86 5   A WORK DISABILITY MONITORING SYSTEM   88      Need for a Work Disability Monitoring System,   89      Characteristics of a Disability Monitoring System,   94      Developing and Planning a Work Disability Monitoring System,   108 6   IMPROVING THE DISABILITY DECISION PROCESS   113      Background,   113      The Current Decision Process for Initial Claims,   114      SSA’s Research Plan for a Redesigned Disability Decision Process,   117      “Post-Redesign” Period,   123      Alternative Approaches to the Current Decision Process,   137 7   ENHANCING SSA’S RESEARCH CAPACITY   140      Resource Requirements,   141      Need for Fundamental Changes,   145 REFERENCES   148 ACRONYMS AND ABBREVIATIONS   156 APPENDIXES     A   Committee Meetings and Presenters of Testimony   159 B   Workshop Agendas and Presenters   161 C   Committee Recommendations   170 BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS   174 PART II:   COMMISSIONED PAPERS         “Conceptual Issues in the Measurement of Work Disability,” by Alan M. Jette, Ph.D., and Elizabeth Badley, M.D.   183     “Methodological Issues in the Measurement of Work Disability,” by Nancy A. Mathiowetz, Ph.D.   211

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs     “SSA’s Disability Determination of Mental Impairments: A Review Toward an Agenda for Research,” by Cille Kennedy, Ph.D.   241     “Survey Design Options for the Measurement of Persons with Work Disabilities,” by Nancy A. Mathiowetz, Ph.D.   281     “Persons with Disabilities and Demands of the Contemporary Labor Market,” by Edward Yelin, Ph.D., and Laura Trupin, MPH   303 INDEX   335

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs Tables and Figures TABLES 2-1   Disabled Workers: Number of SSDI Applications, Awards, Ratio of Awards to Applications, and Applications per 1,000 Insured Workers for Selected Years, 1960–2000,   36 2-2   Disabled Workers: Number of SSDI Beneficiaries and Terminations and Termination Rate per 1,000 Beneficiaries, 1960–2000,   39 2-3   Disabled Workers: Number of SSDI Beneficiaries, Workers Insured in Event of Disability, and Beneficiaries per 1,000 Insured, 1960–2000,   42 2-4   Percentage of Disabled Workers Awarded SSDI Benefits, by Gender, 1960–2000,   46 2-5   Labor Force Participation Rates (percent) of Persons with and Without Disabilities, by Gender, United States, 1983–1999,   50 5-1   Federal Data Collection Efforts,   100 6-1   Issues and Methods to Be Addressed in a Framework for a Research Plan for a New Disability Decision Process,   121

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The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs FIGURES 1-1   The Social Security Administration’s current and proposed disability claims process,   23 2-1   Number of SSDI applications, awards, beneficiaries, and terminations, aged 18–64 years, 1960–2000,   36 2-2   Number of SSI applications, awards, recipients, and terminations, aged 18–64 years, 1974–2000,   38 2-3   Average age of persons awarded SSDI benefits, by gender, 1960–2000,   45 2-4   Percentage distribution of SSDI awards for adults aged 18–64, by diagnostic groups, 1981 and 2000,   47 6-1   The Social Security Administration’s current and proposed redesigned disability decision process,   118

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