MENTAL RETARDATION

DETERMINING ELIGIBILITY FOR SOCIAL SECURITY BENEFITS

Committee on Disability Determination for Mental Retardation

Daniel J. Reschly, Tracy G. Myers, and Christine R. Hartel, Editors

Board on Behavioral, Cognitive, and Sensory Sciences

Division of Behavioral and Social Sciences and Education

National Research Council

NATIONAL ACADEMY PRESS
Washington, D.C.



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Mental Retardation: Determining Eligibility for Social Security Benefits MENTAL RETARDATION DETERMINING ELIGIBILITY FOR SOCIAL SECURITY BENEFITS Committee on Disability Determination for Mental Retardation Daniel J. Reschly, Tracy G. Myers, and Christine R. Hartel, Editors Board on Behavioral, Cognitive, and Sensory Sciences Division of Behavioral and Social Sciences and Education National Research Council NATIONAL ACADEMY PRESS Washington, D.C.

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Mental Retardation: Determining Eligibility for Social Security Benefits NATIONAL ACADEMY PRESS 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. The study was supported by Contract No. 0600-99-38803 between the National Academy of Sciences and the U.S. 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 organizations or agencies that provided support for this project. Library of Congress Cataloging-in-Publication Data Mental retardation : determining eligibility for social security benefits / Daniel J. Reschly, Tracy G. Myers, and Christine R. Hartel, editors ; Committee on Disability Determination for Mental Retardation, Board on Behavioral, Cognitive, and Sensory Sciences, Division of Behavioral and Social Sciences and Education, National Research Council. p. ; cm. Includes bibliographical references and index. Supported by contract between the National Academy of Sciences and the U.S. Social Security Administration Contract No. 0600-99-38803 ISBN 0-309-08323-0 (pbk.) 1. Mental retardation—Diagnosis. 2. Disability evaluation—United States. 3. Social security—United States. [DNLM: 1. United States. Social Security Administration. 2. Disability Evaluation—United States. 3. Eligibility Determination—standards—United States. 4. Mental Retardation—diagnosis—United States. 5. Public Policy—United States. 6. Social Security—United States. WM 304 M549 2002] I. Reschly, Daniel J. II. Myers, Tracy G. III. Hartel, Christine R., 1947- IV. National Research Council (U.S.). Committee on Disability Determination for Mental Retardation. V. United States. Social Security Administration. RC570.2 .M46 2002 616.85’884075—dc21 2002005467 Additional copies of this report are available from National Academy Press, 2101 Constitution Avenue, N.W., Washington, D.C. 20418 Call (800) 624-6242 or (202) 334-3313 (in the Washington metropolitan area) This report is also available online at http://www.nap.edu Printed in the United States of America Copyright 2002 by the National Academy of Sciences. All rights reserved. Suggested citation: National Research Council (2002) Mental Retardation: Determining Eligibility for Social Security Benefits. Committee on Disability Determination for Mental Retardation. Daniel J. Reschly, Tracy G. Myers, and Christine R. Hartel, editors. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press. Cover: Michele de la Menardiere. Detail from Colors #5. Acrylic on canvas.

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Mental Retardation: Determining Eligibility for Social Security Benefits 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. 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 M. Alberts and Dr. Wm. A. Wulf are chairman and vice chairman, respectively, of the National Research Council.

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Mental Retardation: Determining Eligibility for Social Security Benefits COMMITTEE ON DISABILITY DETERMINATION FOR MENTAL RETARDATION DANIEL J. RESCHLY (Chair), Department of Special Education, Vanderbilt University HAROLYN M. E. BELCHER, Department of Pediatrics, The Johns Hopkins University School of Medicine JAN BLACHER, School of Education, University of California at Riverside BRUCE A. BRACKEN, School of Education, The College of William and Mary ELISABETH M. DYKENS, Neuropsychiatric Institute, University of California, Los Angeles THOMAS HEHIR, Graduate School of Education, Harvard University JOHN W. JACOBSON, New York State Office of Mental Retardation and Developmental Disabilities, Albany BETTE R. KELTNER, School of Nursing, Georgetown University MARTY WYNGAARDEN KRAUSS, Heller Graduate School, Brandeis University HANS C. PALMER, Economics Department, Pomona College SHARON LANDESMAN RAMEY, Civitan International Research Center, University of Alabama, Birmingham JAMES C. SHANTEAU, Department of Psychology, Kansas State University WAYNE P. SILVERMAN, Department of Psychology, New York State Institute for Basic Research in Developmental Disabilities GARY N. SIPERSTEIN, Center for Social Development and Education, University of Massachusetts, Boston SARA S. SPARROW, Psychology Department, Yale University KEITH F. WIDAMAN, Psychology Department, University of California, Davis CHRISTINE R. HARTEL, Study Director TRACY G. MYERS, Senior Research Associate WENDY E. MINICH, Senior Project Assistant

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Mental Retardation: Determining Eligibility for Social Security Benefits BOARD ON BEHAVIORAL, COGNITIVE, AND SENSORY SCIENCES ANNE PETERSEN (Chair), W.K. Kellogg Foundation, Battle Creek, Michigan LINDA MARIE BURTON, Center for Human Development and Family Research, The Pennsylvania State University STEPHEN J. CECI, Department of Human Development, Cornell University EUGENE K. EMORY, Department of Psychology, Emory University ROCHEL GELMAN, Center for Cognitive Science, Rutgers University ANTHONY W. JACKSON, The Galef Institute, Los Angeles PETER LENNIE, Center For Neural Science, New York University MARCIA C. LINN, Graduate School of Education, University of California, Berkeley ELISSA L. NEWPORT, Department of Brain and Cognitive Sciences, University of Rochester CHARLES R. PLOTT, Division of Humanities and Social Sciences, California Institute of Technology MICHAEL L. RUTTER, Institute of Psychiatry, University of London ARNOLD SAMEROFF, Center for Human Growth and Development, University of Michigan JAMES W. STIGLER, Department of Psychology, University of California, Los Angeles JOHN A. SWETS, BBN Technologies (retired), Tequesta, Florida RICHARD F. THOMPSON, Neurosciences Program, University of Southern California WILLIAM A. YOST, Parmly Hearing Institute, Loyola University Chicago CHRISTINE R. HARTEL, Director

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Mental Retardation: Determining Eligibility for Social Security Benefits Contents     ACKNOWLEDGMENTS   ix     EXECUTIVE SUMMARY   1 1   INTRODUCTION   15 2   THE POLICY CONTEXT   38 3   THE ROLE OF INTELLECTUAL ASSESSMENT   69 4   THE ROLE OF ADAPTIVE BEHAVIOR ASSESSMENT   141 5   THE RELATIONSHIP OF INTELLIGENCE AND ADAPTIVE BEHAVIOR   208 6   DIFFERENTIAL DIAGNOSIS   245

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Mental Retardation: Determining Eligibility for Social Security Benefits     REFERENCES   282     BIOGRAPHICAL SKETCHES   315     INDEX   323

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Mental Retardation: Determining Eligibility for Social Security Benefits Acknowledgments This report is the result of two years of hard work on the part of a dedicated, diverse, talented, and energetic panel of experts, who were supported by an equally dedicated, talented, and energetic staff. The National Research Council (NRC), in response to a request from the U.S. Social Security Administration (SSA), organized the effort. This study examined the scientific base and current clinical practices in diagnosing mental retardation for disability benefit purposes. The primary focus is on individuals in the mild range of mental retardation, those with intelligence scores hovering around 70. The committee examined the scientific base regarding intelligence and its assessment, adaptive behavior and its assessment, the relationship between intelligence and adaptive behavior, and differential diagnosis. Members also recognized that the results of this work might have effects on SSA, disability benefit recipients, and other service systems that provide sup-

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Mental Retardation: Determining Eligibility for Social Security Benefits ports to this population. Consequently, the related literature was also examined. The Committee on Disability Determination for Mental Retardation was aided by numerous individuals and organizations in the preparation of this report. The Office of Disability in SSA sponsored the study. Its staff was very helpful in assisting committee members and staff to understand the disability system. Terrence Dunlop, our project manager, and David Barnes were helpful in explaining the purposes of the study from SSA’s perspective. Cathy Lively and Cheryl Wrobel patiently answered members’ questions about the workings of the disability determination system and provided supplemental information on the numbers of people applying for disability benefits. The committee was assisted in its data collection efforts by a number of individuals who authored commissioned papers on various topics related to the study. These papers were very helpful in laying out issues that the committee had to tackle in its deliberations. Special thanks go to Susan Parish and David Braddock, whose analysis of the policy context of SSA’s disability determination process forms the basis of the text in Chapter 2. The committee is also very grateful to Sharon Borthwick-Duffy for an excellent paper on the assessment of adaptive behavior; parts of it were used in Chapter 4. Thanks are also extended to Andrew Houtenville for his work on the economic experience of individuals with mental retardation; Jonathan Leland and Robyn Dawes for a thought-provoking paper on decision making among individuals with mental retardation; David Mank for his paper and presentation on employment and employability among individuals with mental retardation; and Bruce Shapiro for his paper on differential diagnosis. Jane Thompson conducted Monte Carlo simulations of the relationship between intelligence and adaptive behavior using widely available and well-standardized measures; these were crucial to the committee’s deliberations and ultimately to its conclusions and recommendations. The committee is indebted to the NRC staff for their work in

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Mental Retardation: Determining Eligibility for Social Security Benefits preparation of this report. Tracy Myers, Christine Hartel, and Wendy Minich shepherded the group through the task with efficiency and good humor. We were also fortunate to have an excellent editor, Christine McShane. Finally, I want to personally thank the committee for their intelligence and sense of purpose in approaching and completing the task. 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 the 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 thank the following individuals for their participation in the review of this report: John M. Belmont, University of Kansas Medical Center; David Braddock, Coleman Institute for Cognitive Disabilities and Associate Vice President for Research, University of Colorado; Jacob Klerman, RAND, Santa Monica, CA; William MacLean, Department of Psychology, University of Wyoming; Kevin McGrew, Department of Educational Psychology, University of Minnesota; Iris Tan Mink, Department of Psychiatry and Behavioral Science, University of California, Los Angeles; Donald K. Routh, Department of Psychology, University of Miami; Frank Rusch, College of Education and Children’s Research Center, University of Illinois at Urbana-Champaign; and Michael Rutter, Institute of Psychiatry, London, England. 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 Richard Wagner, Department of Psychology, Florida State University. Appointed by the National Research Council, he was responsible for making certain that an independent examination of this report was

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Mental Retardation: Determining Eligibility for Social Security Benefits 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. Daniel J. Reschly, Chair Committee on Disability Determination for Mental Retardation

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Mental Retardation: Determining Eligibility for Social Security Benefits MENTAL RETARDATION

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