SPEECH AND LANGUAGE
DISORDERS IN CHILDREN
Implications for the Social Security Administration’s
Supplemental Security Income Program
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 PRESS
THE NATIONAL ACADEMIES PRESS500 Fifth Street, NWWashington, 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: 978-0-309-38875-7
International Standard Book Number-10: 0-309-38875-9
Library of Congress Control Number: 2016933601
Digital Object Identifier: 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 Administration’s Supplemental Security Income Program. Washington, DC: The National Academies Press. doi: 10.17226/21872.
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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 (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 Children’s 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
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
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 “RICK” ERDTMANN, Director, Board on the Health of Select Populations
KIMBER BOGARD, Director, Board on Children, Youth, and Families4
1 Starting June 2015.
2 Through June 2015.
3 Starting March 2015.
4 Through July 2015.
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 recognize 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 committee's 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 committee's efforts: Ilhom Akobirshoev, Esther Son, and Rajan Sonik.
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.
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 Children’s Hospital
Steven F. Warren, University of Kansas
Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the report's overall conclusions, nor did they see the final draft of the report before its release. 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.
For low-income children who experience a severe disability, the Supplemental Security Income (SSI) program offers a vital source of financial support. Indeed, so important is the assistance made available through the SSI children's program that its scope and reach were the focus of a landmark 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 automatically 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 development 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 devastating impact on children's health and development. These disorders can profoundly affect children's ability to communicate; learn; and establish and maintain strong family, peer, and community relationships. They elevate risk for a wide variety of adverse outcomes, including social isolation 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
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 committee's 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 committee's 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 SSA's 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 logistical 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 support throughout the study process.
The committee hopes that this report will further a greater understanding 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
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