VISUAL IMPAIRMENTS:

DETERMINING ELIGIBILITY FOR SOCIAL SECURITY BENEFITS

Committee on Disability Determination for Individuals with Visual Impairments

Peter Lennie and Susan B. Van Hemel, 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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Visual Impairments: Determining Eligibility for Social Security Benefits VISUAL IMPAIRMENTS: DETERMINING ELIGIBILITY FOR SOCIAL SECURITY BENEFITS Committee on Disability Determination for Individuals with Visual Impairments Peter Lennie and Susan B. Van Hemel, 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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Visual Impairments: 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. 0600-99-38810 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 Visual impairments : determining eligibility for social security benefits / Peter Lennie and Susan B. Van Hemel, editors ; Committee on Disability Determination for Individuals with Visual Impairments, 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. ISBN 0-309-08348-6 (pbk.) 1. Vision disorders—Diagnosis. 2. People with visual disabilities—Evaluation. 3. Disability evaluation—United States. 4. Social security—United States. [DNLM: 1. Vision Disorders—diagnosis—United States. 2. Disability Evaluation—United States. 3. Eligibility Determination—United States. 4. Social Security—United States. 5. Vision Tests—United States. WW 140 V8345 2002] I. Lennie, Peter. II. Van Hemel, Susan B. III. National Research Council (U.S.). Committee on Disability Determination for Individuals with Visual Impairments. RE91 .V525 2002 617.7’15—dc21 2002005466 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) Visual Impairments: Determining Eligibility for Social Security Benefits. Committee on Disability Determination for Individuals with Visual Impairments. Peter Lennie and Susan B. Van Hemel, editors. Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.

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Visual Impairments: 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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Visual Impairments: Determining Eligibility for Social Security Benefits COMMITTEE ON DISABILITY DETERMINATION FOR INDIVIDUALS WITH VISUAL IMPAIRMENTS PETER LENNIE (Chair), Center for Neural Science, New York University IAN L. BAILEY, School of Optometry, University of California, Berkeley JOHN A. BRABYN, The Smith-Kettlewell Eye Research Institute, San Francisco RICHARD V. BURKHAUSER, College of Human Ecology, Cornell University VELMA DOBSON, Department of Ophthalmology, University of Arizona RICHARD D. GONZALEZ, Department of Psychology, University of Michigan KAREN JACOBS, Sargent College of Health and Rehabilitation Sciences, Boston University CHRIS A. JOHNSON, Devers Eye Institute, Portland, Oregon FRANK J. LANDY, SHL/Landy Jacobs, Inc., Boulder, Colorado PAUL P. LEE, Duke University Eye Center GORDON E. LEGGE, Department of Psychology, University of Minnesota DENNIS M. LEVI, School of Optometry, University of California, Berkeley CYNTHIA OWSLEY, Department of Ophthalmology, University of Alabama, Birmingham SHEILA K. WEST, Wilmer Eye Institute, Johns Hopkins University M. ROY WILSON, School of Medicine, Creighton University SUSAN B. VAN HEMEL, Study Director WENDY E. KEENAN, Senior Project Assistant

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Visual Impairments: 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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Visual Impairments: Determining Eligibility for Social Security Benefits CONTENTS     PREFACE   ix     EXECUTIVE SUMMARY   1     Tests of Visual Functions,   2     Visual Task Performance,   3     Other Means of Assessing Disability,   3     Testing of Infants and Children,   4     Recommendations,   5 1   INTRODUCTION   11     Issues That Prompted the Study,   12     Prevalence and Significance of Visual Impairments,   15     The Social Security Context,   29     The Committee’s Approach,   40     Organization of the Report,   49 2   TESTS OF VISUAL FUNCTIONS   51     Visual Acuity,   52     Visual Fields,   69     Contrast Sensitivity,   83     Color Vision,   95

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Visual Impairments: Determining Eligibility for Social Security Benefits     Binocular Function,   100     Visual Search,   103     Glare and Light/Dark Adaptation,   106     Visual Efficiency,   111     Recommendations for Tests of Visual Functions,   118 3   VISUAL TASK PERFORMANCE   126     Reading,   129     Orientation and Mobility,   153     Social Participation,   168     Tool Use and Manipulation,   173     Health-Related Quality of Life,   179     Work Skills and Visual Functioning,   185     Recommendations for Tests of Visual Task Performance,   196 4   ASSESSMENT OF VISION IN INFANTS AND CHILDREN   199     Assessment Issues,   200     Visual Acuity,   203     Visual Fields,   216     Contrast Sensitivity,   225     REFERENCES   231     APPENDIXES     A   Employment and Economic Consequences of Visual Impairment   275 B   Public Forum on Visual Disability Determination Methods and Issues   322 C   Glossary of Social Security Terms Related to Disability   330 D   Biographical Sketches   335     INDEX   343

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Visual Impairments: Determining Eligibility for Social Security Benefits PREFACE This report is the product of over two years’ work by a committee of 15 diverse experts in vision and other subjects, convened by the National Research Council in response to a request from the Social Security Administration. The committee was tasked to review the tests and criteria used to determine visual disability for purposes of eligibility for Social Security benefits. The committee evaluated the tests currently used to determine disability for people with visual impairments and examined other possible ways to assess such disability, including new tests of visual functions and the direct measurement of vision-dependent task performance. Special attention was given to finding ways to improve the reliability and validity of tests of visual function and to reviewing evidence bearing on the ability of such tests to predict job performance capabilities. The committee would like to acknowledge the contributions of a number of people who helped us to complete the work reported here. First, we are grateful to the consultants who provided information and guidance on issues under study, several of whom prepared commissioned or pro bono reviews and analyses for the committee: Andrew Houtenville of Cornell University; Denis Pelli and Marisa Carrasco of New York University; Barbara Altman and Beth Rasch of

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Visual Impairments: Determining Eligibility for Social Security Benefits the Centers for Disease Control and Prevention; August Colenbrander of the Smith-Kettlewell Eye Research Institute; Richard Jeanneret and Kevin Rook of Jeanneret & Associates; and Carol Mangione and Peter Gutierrez of the University of California, Los Angeles. We also wish to thank the staff of the Social Security Administration (SSA) Office of Disability: Sandra Salan, project sponsor, and her associates, Michelle Hungerman and Cara Fireison. They provided much useful information on how SSA programs really work and also improved our description of SSA disability programs and procedures. Also at SSA, Terry Dodson, Carole Jones, and Susan David prepared data analyses from SSA statistical files in response to our queries, and Leo Hollenbeck of the SSA library helped us uncover historical information on SSA programs. In the service and advocacy community, we are grateful to all of the organizations that nominated speakers and otherwise supported the public forum the committee held on November 15, 2000, and to the individuals at those organizations who provided valuable information to help us in planning the forum. We are especially grateful to the forum participants, listed in Appendix B, who gave thoughtful and expert responses to the difficult questions we posed, providing the committee with valuable insights into the issues that are most important to people with visual impairments. We also would like to acknowledge the officials and others associated with disability benefit programs in other countries who responded to our questions about their programs: Mansel Aylward, Chief Medical Advisor, Department of Social Security, United Kingdom; Örjan Bäckman, KnowledgeCentre, Uppsala, Sweden; Barbro Lutteman and Kristina Tornquist, Örebro University, Sweden; Doug Taylor, Director, Income Security Programs, Disability Benefits Division, Human Resources Development Canada. At the National Research Council, Susan B. Van Hemel was the study director for this project. Special thanks are due to Gooloo Wunderlich, of the Institute of Medicine, for sharing her knowledge of SSA disability programs and policies, to Christine Hartel, director of the

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Visual Impairments: Determining Eligibility for Social Security Benefits Board on Behavioral, Cognitive, and Sensory Sciences, for her guidance and support, to Christine McShane, for editing our manuscript with great skill and insight, and to Wendy Keenan, our skilled and professional project assistant, whose contributions to this study were invaluable. I would also like to recognize the committee members, who provided an exemplar of how an interdisciplinary process should work: they debated ideas on their merits, shared insights from different viewpoints, and were consistently respectful of each other’s expertise. 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 Report Review Committee of the National Research Council (NRC). 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: Aries Arditi, Thomas J. Watson Research Center, IBM Corporation, Yorktown Heights, NY; Monroe Berkowitz, Rutgers University; Karen J. Cruickshanks, Department of Ophthalmology and Visual Sciences and Department of Population Health Sciences, University of Wisconsin; Eleanor E. Faye, Lighthouse International, New York, NY; Gregory Goodrich, Veterans Administration Palo Alto Health Care System, Palo Alto, CA; Marilyn Mets, Department of Ophthalmology, Northwestern University Medical School; Gary S. Rubin, Institute of Ophthalmology, London, England; Frank Thorn, New England College of Optometry, Boston, MA. Although these 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 Robert Sekuler of Brandeis University. Appointed by the National Research Council, he was responsible for making sure

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Visual Impairments: Determining Eligibility for Social Security Benefits that an independent examination of this report was carried out in accordance with institutional procedures and that all reviewers’ comments were considered carefully. Responsibility for the final content of this report, however, rests entirely with the authoring committee and the institution. Peter Lennie, Chair Committee on Disability Determination for Individuals with Visual Impairments

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Visual Impairments: Determining Eligibility for Social Security Benefits VISUAL IMPAIRMENTS

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