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Committee on the Evaluation of the Supplemental Security Income (SSI) Disability Program for Children with Speech Disorders and Language Disorders Sara Rosenbaum and Patti Simon, Editors Board on the Health of Select Populations Board on Children, Youth, and Families Institute of Medicine Division of Behavioral and Social Sciences and Education
THE NATIONAL ACADEMIES PRESSâ 500 Fifth Street, NWâ Washington, DC 20001 This study was supported by Contract/Grant No. SS00-13-60048/0004 between the National Academy of Sciences and the Social Security Administration. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13:â 978-0-309-38875-7 International Standard Book Number-10:â 0-309-38875-9 Library of Congress Control Number:â 2016933601 Digital Object Identifier:â 10.17226/21872 Additional copies of this report are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2016 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2016. Speech and language disorders in children: Implications for the Social Security Administrationâs Supplemental Security Income Program. Washington, DC: The National Academies Press. doi: 10.17226/21872.
The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institu- tion to advise the nation on issues related to science and Â echnology. Members t are elected by their peers for outstanding contributions to research. Dr. Ralph J. Cicerone is president. The National Academy of Engineering was established in 1964 under the char- ter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Â ciences to S advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and ad- vice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.national-academies.org.
COMMITTEE ON THE EVALUATION OF THE SUPPLEMENTAL SECURITY INCOME (SSI) DISABILITY PROGRAM FOR CHILDREN WITH SPEECH DISORDERS AND LANGUAGE DISORDERS SARA ROSENBAUM (Chair), Harold and Jane Hirsh Professor of Health Law and Policy, Milken Institute School of Public Health, The George Washington University WILLIAM J. BARBARESI, Associate Chief, Division of Developmental Medicine, Director, Developmental Medicine Center, Wade Family Foundation Chair in Developmental Medicine, Boston Childrenâs Hospital; Associate Professor of Pediatrics, Harvard Medical School STEPHEN M. CAMARATA, Professor of Hearing and Speech Sciences, Vanderbilt University School of Medicine CHRISTINE DOLLAGHAN, Associate Dean and Professor, School of Behavioral and Brain Sciences, The University of Texas at Dallas SIDNEY M. GOSPE, JR., Herman and Faye Sarkowsky Endowed Chair, Head, Division of Pediatric Neurology and Professor of Neurology and Pediatrics, University of Washington GLORIA L. KRAHN, Barbara Emily Knudson Endowed Chair in Family Policy Studies, Oregon State University ELYSA MARCO, Associate Professor of Neurology, University of California, San Francisco, School of Medicine MARY PAT MOELLER, Director, Center for Childhood Deafness, Director, Language Development Laboratory, Boys Town National Research Hospital SUSAN L. PARISH, Nancy Lurie Marks Professor of Disability Policy; Director, Lurie Institute for Disability Policy, and Associate Dean for Research, The Heller School for Social Policy and Management, Brandeis University RAMESH RAGHAVAN, Professor and Associate Dean for Research, School of Social Work, Rutgers, The State University of New Jersey AUDREY M. SORRELLS, Associate Dean of Students for Research and Associate Professor, The University of Texas at Austin, The College of Education & The Office of the Dean of Students, Division of Student Affairs J. BRUCE TOMBLIN, Emeritus Professor, University of Iowa KARL R. WHITE, Professor of Psychology and Director, National Center for Hearing Assessment and Management, Utah State University v
Consultants HOWARD H. GOLDMAN, Professor of Psychiatry, University of Maryland School of Medicine, Baltimore MICHAEL McGEARY, Former Study Director, Institute of Medicine, The National Academies of Sciences, Engineering, and Medicine, Washington, DC BARBARA C. SONIES, Research Professor, Department of Hearing and Speech Sciences, University of Maryland, College Park Study Staff PATTI SIMON, Study Director, Senior Program Officer GUY CARMELI, Senior Program Assistant1 JENNIFER FLAUBERT, Associate Program Officer ROHIT MUKHERJEE, Senior Program Assistant2 SARA THARAKAN, Research Associate3 FREDERICK âRICKâ ERDTMANN, Director, Board on the Health of Select Populations KIMBER BOGARD, Director, Board on Children, Youth, and Families4 1â Starting June 2015. 2â Through June 2015. 3â Starting March 2015. 4â Through July 2015. vi
Acknowledgments Beyond the work of the study committee and the Institute of Medicine (IOM) project staff, this report reflects contributions from numerous other individuals and groups. The committee takes this opportunity to recog- nize those who so generously gave their time and expertise to inform its deliberations. This study was sponsored by the Social Security Administration. We wish to thank Gina Clemons, Robin Doyle, Joanna Firmin, Marianna LaCanfora, Scott Marko, Natalie Scannell, Melissa Spencer, Marquita Sullivan, and Jim Twist for their guidance and support. In addition, the committee would like to thank the following individuals for their help: Terrance Flannery, Susan Guberman, Angela Harper, Gene Jerry, Chere Johnson, Joseph Karevy, Frances Mardesich, Dana Mercer, Stephanie Myers, Mary Beth Rochowiak, Cheryl A. Williams, Jessica Wisner, and Amanda Wulf. The committee greatly benefited from the opportunity for discussion with the individuals who made presentations at and attended the commit- teeâs workshops and meetings: Kathy Bainbridge, Stephen J. Blumberg, Paul S. Davies, Jeffrey Hemmeter, Howard J. Hoffman, Ann P. Kaiser, Michelle M. Macias, Lemmietta G. McNeilly, Cheryl K. Messick, Meredith Miceli, Rhea Paul, Kalman Rupp, Steven F. Warren, Nora Wells, and Larry Wexler. The committee is thankful for the useful contributions of these many individuals. We extend special thanks to the following individuals who were essential sources of information, generously giving their time and knowledge to further the committeeâs efforts: Ilhom Akobirshoev, Esther Son, and Rajan Sonik. vii
viii ACKNOWLEDGMENTS Many staff within the IOM provided support in various ways to this project. The committee would like to thank Lorraine Bell, Laura DeStefano, Chelsea Frakes, Greta Gorman, Karen Helsing, Linda Kilroy, Fariha Mahmud, Maureen Mellody, Bettina Ritter, Julie Wiltshire, and Joel Wu. The committee gratefully acknowledges Rick Erdtmann, director of the Board on the Health of Select Populations, for his guidance on this study. Finally, Rona Briere and Alisa Decatur are to be credited for the superb editorial assistance they provided in preparing the final report.
Reviewers This report has been reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. 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 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: Kathy Bainbridge, National Institutes of Health National Institute on Deafness and Other Communication Disorders Heidi M. Feldman, Stanford University School of Medicine Lisa Goffman, Purdue University George Howard, University of Alabama at Birmingham Catherine Lord, Weill Cornell Medical College Susan Nittrouer, University of Florida Patricia M. Owens, Patricia M. Owens Consultations in Disability Programs and Policy Doris Trauner, University of California, San Diego, School of Medicine David K. Urion, Boston Childrenâs Hospital Steven F. Warren, University of Kansas ix
x REVIEWERS Although the reviewers listed above provided many constructive com- ments and suggestions, they were not asked to endorse the reportâs overall conclusions, nor did they see the final draft of the report before its re- lease. The review of this report was overseen by Bradford H. Gray, Urban Institute, and Rosemary A. Chalk, independent consultant. 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.
Preface For low-income children who experience a severe disability, the Supplemental Security Income (SSI) program offers a vital source of finan- cial support. Indeed, so important is the assistance made available through the SSI childrenâs program that its scope and reach were the focus of a land- mark 1990 decision by the U.S. Supreme Court, Sullivan v. Zebley. Under its targeted standards, most recently updated by Congress in 1996, the SSI program reaches more than 1.3 million children annually. Most people think of speech and language as skills that children auto- matically acquire as they grow, and for the vast majority of children, this is the case. But the development of speech and language is an extraordinarily complex process, and for a small proportion of children, appropriate de- velopment can be interrupted or can cease altogether. Up to 16 percent of children have such disorders; for a fraction of these children, the disorder can involve an unusual level of severity. In their severest form, speech and language disorders can have a dev- astating impact on childrenâs health and development. These disorders can profoundly affect childrenâs ability to communicate; learn; and establish and maintain strong family, peer, and community relationships. They el- evate risk for a wide variety of adverse outcomes, including social isola- tion and mental health disorders, learning disabilities, behavior disorders, poor academic achievement, long-term placement in special education, and lifetime unemployment. Children with the severest forms of speech and language disorders who live in low-income families may be able to qualify for SSI benefits as well as Medicaid, which is essential to their ability to gain access to appropriate medical treatment. With support from the Social Security Administration (SSA), the xi
xii PREFACE National Academies of Sciences, Engineering, and Medicine formed the Committee on the Evaluation of the SSI Disability Program for Children with Speech Disorders and Language Disorders. The committeeâs charge was to identify past and current trends in the prevalence and persistence of these disorders among the general population of children under 18 and to compare these trends with trends among the SSI child population. The committee also was asked to provide an overview of the current status of diagnosis and treatment of speech and language disorders and the levels of impairment due to these disorders among children under 18. To carry out its charge, the committee engaged in extensive study over the course of nearly 1 year, holding five formal meetings and participating in numerous telephone and email exchanges. As part of its work, the committee held two invitational workshops to gain insight from more than 16 experts in research on and measurement of speech and language disorders among children, as well as in the treatment of such disorders and the administration of educational and social programs and services for affected children. It is the committeeâs hope that the findings and conclusions presented in this report will have impacts both practical and educational. On the practical side, the committee anticipates that its work will help inform the SSAâs policy and program administration activities. On the educational side, the committee hopes that the report will convey to a broader audience the enormous personal, familial, and social consequences of severe speech and language disorders in childhood, and thus the vital importance of effective programs for affected children and their families. This committee was especially fortunate to have a membership that not only possessed the full range of expertise needed to produce this report but also was uncommonly dedicated to its work and to the highest level of collaboration. The committee was extremely fortunate to be supported throughout its work by talented and gracious staff of the Institute of Medicine: Patti Simon, study director; Sara Tharakan and Jennifer Flaubert, research staff; Guy Carmeli and Rohit Mukherjee, who provided logisti- cal and administrative support; and Dr. Rick Erdtmann, Director of the Academies Board on the Health of Select Populations. The committee also wishes to thank Dr. Howard Goldman for his expertise, guidance, and sup- port throughout the study process. The committee hopes that this report will further a greater understand- ing of the challenges faced by the children whose health conditions were the subject of its work, as well as of the central importance of programs such as SSI to the lives of these children. Sara Rosenbaum, Chair Committee on the Evaluation of the Supplemental Security Income (SSI) Disability Program for Children with Speech Disorders and Language Disorders
Contents SUMMARY 1 1 INTRODUCTION 15 Study Context, 16 Study Charge and Scope, 18 Study Approach, 26 Definitions of Key Terms, 27 Significance and Impact of Severe Speech and Language Disorders, 29 Notable Past Work, 34 Findings and Conclusions, 35 Organization of the Report, 36 References, 37 2 CHILDHOOD SPEECH AND LANGUAGE DISORDERS IN THE GENERAL U.S. POPULATION 43 Overview of Childhood Speech and Language Disorders, 43 Diagnosing Speech and Language Disorders, 51 Causes and Risk Factors, 54 Prevalence, 62 Common Comorbidities, 67 Findings and Conclusions, 70 References, 71 xiii
xiv CONTENTS 3 TREATMENT AND PERSISTENCE OF SPEECH AND LANGUAGE DISORDERS IN CHILDREN 81 Factors That Influence Treatment for Speech and Language Disorders, 82 Policies and Guidelines That Influence the Provision of Speech and Language Services to Children, 85 Treatment for Speech and Language Disorders, 87 Persistence of Pediatric Speech and Language Disorders in Children, 108 Findings and Conclusions, 112 References, 113 4 SUPPLEMENTAL SECURITY INCOME FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 125 History of the Supplemental Security Income Program for Children, 126 SSI Eligibility and the Eligibility Determination Process, 131 Application of the SSI Disability Criteria to Children with Speech and Language Disorders, 143 The SSI Determination Process and the Number of Child SSI Recipients, 151 Findings and Conclusions, 154 References, 156 5 COMPARISON OF TRENDS IN CHILDHOOD SPEECH AND LANGUAGE DISORDERS IN THE GENERAL POPULATION AND THE SUPPLEMENTAL SECURITY INCOME PROGRAM POPULATION 159 Data Sources, 160 Trends in the Prevalence of Childhood Speech and Language Disorders in the General Population, 171 Variations in the Prevalence of Speech and Language Disorders by Demographic and Other Characteristics, 175 Trends in Childhood Speech and Language Disorders in the Supplemental Security Income Population, 183 Trends in Childhood Speech and Language Disorders Among Medicaid Beneficiaries, 194 Data Strengths and Limitations, 200 Findings and Conclusions, 202 References, 204
CONTENTS xv 6 OVERALL CONCLUSIONS 207 Overall Conclusions, 208 Final Thoughts, 230 References, 231 APPENDIXES A Glossary of Key Terms 235 B Descriptions of Data Sources 239 C Population and Administrative/Service Data for Speech and Language Disorders 247 D Description of Methods Used to Calculate Trends in National Survey Data 261 E Review of Social Security Administration Case Files 265 F Workshop Agendas 269 G Summary of Mental Disorders and Disabilities Among Low-Income Children 275 H Committee Member Biographies 279