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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

Mental Disorders
and Disabilities
Among
Low-Income
Children

Committee to Evaluate the Supplemental Security Income Disability
Program for Children with Mental Disorders

Thomas F. Boat and Joel T. Wu, 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

images

THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

This study was supported by Contract No. SS00-13-60048/0002 between the National Academy of Sciences and the U.S. 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: 978-0-309-37685-3
International Standard Book Number-10: 0-309-37685-8
Library of Congress Control Number: 2015954355
DOI: 10.17226/21780

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 2015 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. 2015. Mental disorders and disabilities among low-income children. Washington, DC: The National Academies Press.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

images

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members 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 charter 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 Sciences to 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 advice 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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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COMMITTEE TO EVALUATE THE SUPPLEMENTAL SECURITY INCOME DISABILITY PROGRAM FOR CHILDREN WITH MENTAL DISORDERS

THOMAS F. BOAT (Chair), Professor of Pediatrics and Dean Emeritus, University of Cincinnati College of Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio

CARL C. BELL, Staff Psychiatrist, Jackson Park Hospital Family Medicine Clinic, Chicago, Illinois

STEPHEN L. BUKA, Professor and Chair, Department of Epidemiology, Brown University, Providence, Rhode Island

E. JANE COSTELLO, Professor of Medical Psychology, Department of Psychiatry and Behavioral Science, Duke University Medical Center, Durham, North Carolina

MAUREEN S. DURKIN, Professor of Population Health Sciences and Pediatrics, and Waisman Center Investigator, University of Wisconsin School of Medicine and Public Health, University of Wisconsin–Madison

GLENACE EDWALL, Former Director of the Children’s Mental Health Division, Minnesota Department of Human Services, St. Paul

KIMBERLY E. HOAGWOOD, Vice Chair for Research in the Department of Child and Adolescent Psychiatry, New York University School of Medicine, New York City

AMY HOUTROW, Associate Professor, Departments of Physical Medicine & Rehabilitation and Pediatrics, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania

PETER S. JENSEN, President and Chief Executive Officer, REACH Institute, New York, New York

KELLY J. KELLEHER, Professor of Pediatrics and Public Health, Colleges of Medicine and Public Health, The Ohio State University, Columbus

JAMES M. PERRIN, Professor of Pediatrics, Harvard Medical School, Massachusetts General Hospital, Boston

FRED R. VOLKMAR, Irving B. Harris Professor, Yale University Child Study Center, Yale University School of Medicine, New Haven, Connecticut

BARBARA WOLFE, Richard A. Easterlin Professor of Economics, Population Health Sciences, and Public Affairs and Faculty Affiliate, Institute for Research on Poverty, University of Wisconsin–Madison

BONNIE T. ZIMA, Professor-in-Residence, Child and Adolescent Psychiatry, David Geffen School of Medicine, University of California Los Angeles (UCLA), Associate Director, UCLA Center for Health Services and Society

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

Consultants

HOWARD H. GOLDMAN, Professor of Psychiatry, University of Maryland School of Medicine, Baltimore

MICHAEL McGEARY, Senior Program Officer (Retired), Institute of Medicine, National Academies of Sciences, Engineering, and Medicine, Washington, DC

SALLY SHAYWITZ, Audrey G. Ratner Professor in Learning Development, Co-Director, Yale Center for Dyslexia and Creativity, Yale University School of Medicine, New Haven, Connecticut

RUTH E. K. STEIN, Professor, Department of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore, Bronx, New York

Study Staff

JOEL WU, Study Director

JENNIFER FLAUBERT, Research Associate

SARA THARAKAN, Research Associate (from March 2015)

ROHIT MUKHERJEE, Senior Program Assistant (from December 2014 through July 2015)

GUY CARMELI, Senior Program Assistant (from June 2015)

JON Q. SANDERS, Program Coordinator (until February 2015)

KIMBER BOGARD, Director, Board on Children, Youth, and Families

FREDERICK “RICK” ERDTMANN, Director, Board on the Health of Select Populations

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

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:

Christina Bethell, Johns Hopkins University, Bloomberg School of Public Health

Richard Burkhauser, Cornell University, Department of Policy Analysis and Management

Stephan Collishaw, Cardiff University, Institute of Psychological Medicine and Clinical Neurosciences

Robert L. Findling, Kennedy Krieger Institute

Donald Lollar, Oregon Health Sciences University

Christopher J. McDougle, Harvard Medical School

Mark Olfson, Columbia University Medical Center

Patricia M. Owens, Patricia M. Owens Consultations in Disability Programs and Policy

Daniel Pine, National Institute of Mental Health

Mark A. Stein, University of Washington, Seattle Children’s Hospital

Leslie R. Walker, University of Washington, Seattle Children’s Hospital

Page viii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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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 Alan Leshner, Rutgers University, and Robert S. Lawrence, Johns Hopkins University. 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.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

Preface

Four decades ago, disability and functional impairment in children was recognized as a national challenge, leading to responsive federal legislation through the Social Security Act in the 1970s. The Supplemental Security Income (SSI) program was created within the Social Security Administration (SSA), initially to provide need-based monetary support for elderly adults and adults with disabilities. It was rapidly extended to include the families of children with severe impairments owing to disabling conditions. The program has grown to provide more than $10 billion of support for families of severely impaired children. Over the years, a growing number of child SSI benefit recipients have been impaired as a consequence of mental, emotional, or behavioral disorders, and in the last decade, parity was reached between the proportion of recipients of SSI benefits for physical and mental disorders. Despite this growth, the consensus committee found it highly likely that a sizable number of families that include a child with a disabling mental disorder are not supported by SSI benefits.

The SSI benefits program for children is positioned to mitigate the mutually reinforcing connection between childhood disability and family poverty. As addressed in this report, the costs and employment limitations of parents who care for children with severe disabilities are widely recognized. In addition, the occurrence and severity of disability is magnified by family poverty. Breaking the poverty–disability cycle is an important goal of the childhood SSI program, and, in the opinion of many, the current $10.5 billion annual investment provides a sizable return. To put this figure in perspective, the $10.5 billion expenditure represents only 5 to 6 percent of all disability benefits provided to U.S. citizens by the SSA.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

In our federal expenditures–conscious society, questions have been raised about the growth of SSI benefits directed to children with mental disorder–related disabilities. To better address the questions raised, the SSA sponsored this Institute of Medicine (IOM) consensus study to gather and analyze data that could better illuminate the relationship between the growth of the SSI benefits program for childhood mental disorders and trends in mental disorder diagnoses within the general population of U.S. children. The latter data are limited and have significant drawbacks when used for comparisons with the SSI data. These drawbacks are meticulously addressed in the report, and they led the committee to seek other comparison populations. Two such populations were identified—namely, all U.S. children living in families with an income under 200 percent of the federal poverty level, and children enrolled in the Medicaid program. Both have the advantage of matching family income with that of children who are enrolled in the SSI program. The committee’s task included the gathering and analysis of data on childhood mental disorders in aggregate and also for the major contributing mental disorder diagnoses, some of which (such as attention deficit hyperactivity disorder) have been the object of pointed public questions. All of these tasks required the committee to obtain new data sets and review them de novo.

Thus, our efforts included the collection and review of large amounts of data from the SSI program and from comparison populations, in contrast to many other consensus committee efforts which have reviewed published literature. The committee was assisted by a team from Rutgers University which generated and analyzed data from the Medicaid program under a contractual arrangement. The analytical as well as the review functions of our task created a demand on committee members and staff that translated to an extraordinary commitment of time, effort, and expertise. We trust that the data, findings, and conclusions from this committee will be informative not only to the study sponsor (the SSA), but also for the future shaping of public opinion and policy. Children with disabilities in the United States, particularly those with mental, emotional, or behavioral disorders, are deserving of the highest level of planning and implementation for family support programs. Both at-risk families and society as a whole stand to benefit.

The committee was instructed not to address SSI processes for the adjudication of claims, and it was careful not to do so. However, in the course of committee deliberations it became clear that there is extensive state-to-state variation in family access to SSI benefits for childhood mental disorder disability. It was also noted that there may be opportunities for analysis of the adjudication process, and the committee suggests that these areas be considered for future quality improvement efforts.

As chair of this consensus committee, I wish to acknowledge the broad

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×

and high-level capabilities of committee members, spanning a spectrum of expertise from childhood impairment to disorder-specific disabilities, and across key disciplines such as child psychiatry and psychology, pediatric medicine, epidemiology, economics, population health, mental health program management, and health services organization and improvement. A special thank-you goes to the liaison members from the IOM Standing Committee of Medical Experts to Assist Social Security on Disability Issues, Drs. Howard H. Goldman and Ruth E. K. Stein, who made many tangible as well as conceptual contributions. The IOM staff for this project worked tirelessly and productively to capture committee inputs, organize and execute a huge data management and analysis effort, and formulate committee findings and conclusions. With oversight by Dr. Rick Erdtmann, director of the Board on the Health of Select Populations, Mr. Joel Wu, our study director, managed with great skill the many interfaces required by the committee task, insightfully translated committee findings to report text, and encouraged conversations about tough topics with grace and good humor, all in the context of extended hours and workweeks. My great appreciation goes to all who contributed.

Thomas F. Boat, M.D., Chair

Committee to Evaluate the Supplemental

Security Income Disability Program for

Children with Mental Disorders

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Acknowledgments

Beyond the work of the 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 U.S. Social Security Administration. We wish to thank Gina Clemons, Robin Doyle, Joanna Firmin, Marianna LaCanfora, Scott Marko, Virginia Reno, Melissa Spencer, Jim Twist, and Cheryl Williams and their staff for their guidance and support.

For their collaboration and support in developing the analysis of Medicaid data contained in the report, the committee would also like to extend special thanks to the staff of the Rutgers University Institute for Health; the Center for Health Services Research on Pharmacotherapy, Chronic Disease Management, and Outcomes; and the Center for Education and Research on Mental Health Therapeutics, including Scott Bilder, Stephen Crystal, and Cassandra Simmel.

For her contribution to the chapters on learning disabilities, the committee would like to recognize Cristina Fernandez at Brown University.

The committee greatly benefited from the opportunity for discussion with the individuals who made presentations at and attended the committee’s workshops and meetings: Elaine Alfano, Richard Burkhauser, Mark Duggan, Marty Ford, Soleil Gregg, Darcy Gruttadaro, Neal Halfon, Ron Haskins, Donald Lollar, Ruth Luckasson, Trudy Lyon-Hart, Laura McNally, Jennifer Nottingham, Kathy Ruffing, Andy Shih, Rune Simeonsson, Rebecca Vallas, David Wittenberg, and Tom Yates.

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Many staff within the IOM provided support in various ways to this project. The committee would like to thank E. Lorraine Bell, Laura DeStefano, Chelsea Frakes, Greta Gorman, Karen Helsing, Maureen Mellody, Patti Simon, and Julie Wiltshire.

Page xvii Cite
Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
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Acronyms and Abbreviations

AACAP

American Academy of Child and Adolescent Psychiatry

ADD

attention deficit disorder

ADDM

Autism and Developmental Disabilities Monitoring

ADHD

attention deficit hyperactivity disorder

APA

American Psychological Association

ASD

autism spectrum disorder

AUD

alcohol use disorder

 

 

BA

Broadman area

BD

bipolar disorder

BPD

borderline personality disorder

BP-NOS

bipolar disorder not otherwise specified

 

 

CD

conduct disorder

CDC

Centers for Disease Control and Prevention

CDR

Continuing Disability Review

CNS

central nervous system

CPT

current procedural terminology

CRC

Convention on the Rights of the Child

CRS

Congressional Research Service

 

 

DDS

disability determination services

DISC

Diagnostic Interview Schedule for Children

DMDD

disruptive mood dysregulation disorder

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DSM

American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders

 

 

ECLP

Early Childhood Longitudinal Program

 

 

FAS

fetal alcohol syndrome

 

 

GAO

Government Accountability Office

 

 

HIV

human immunodeficiency virus

 

 

ICD

International Classification of Disease

ICF

International Classification of Function

ICF-CY

International Classification of Function for Children and Youth

ID

intellectual disability

IDEA

Individuals with Disabilities Education Act

IOM

Institute of Medicine

IQ

intelligence quotient

 

 

K-SADS

Schedule for Affective Disorders and Schizophrenia for School Age Children

 

 

LD

learning disorder

 

 

MAOI

Monoamine oxidase inhibitor

MD

major depression

MDD

major depressive disorder

 

 

NAMCS

National Ambulatory Medical Care Survey

NCMRR

National Center for Medical Rehabilitation Research

NCS-A

National Comorbidity Survey-Adolescent Supplement

NCS-R

National Comorbidity Survey-Replication

NEMESIS

Netherlands Mental Health Survey and Incidence Study

NHIS

National Health Interview Survey

NRC

National Research Council

NSCH

National Survey of Children’s Health

NS-CSHCN

National Survey of Children with Special Health Care Needs

 

 

ODD

oppositional defiant disorder

Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2015. Mental Disorders and Disabilities Among Low-Income Children. Washington, DC: The National Academies Press. doi: 10.17226/21780.
×
ODDRS

Oppositional Defiant Disorder Rating Scale

 

 

PBD

pediatric bipolar disorder

PDD

persistent depressive disorder

PDD

pervasive developmental disorder

PIQ

performance intelligence quotient

PRWORA

Personal Responsibility and Work Opportunity Reconciliation Act

 

 

RTI

response to treatment intervention

 

 

SGA

substantial gainful activity

SNRI

selective serotonin and norepinephrine reuptake inhibitor

SSA

Social Security Administration

SSI

Supplemental Security Income

SSRI

selective serotonin reuptake inhibitor or serotonin-specific reuptake inhibitor

SUD

substance use disorder

 

 

TBI

traumatic brain injury

TCA

tricyclic antidepressant

 

 

UN

United Nations

 

 

VIQ

verbal intelligence quotient

 

 

WHO

World Health Organization

WIAT

Wechsler Individual Achievement Test

WISC

Wechsler Intelligence Scale for Children

WRAT

Wide Range Achievement Test

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Children living in poverty are more likely to have mental health problems, and their conditions are more likely to be severe. Of the approximately 1.3 million children who were recipients of Supplemental Security Income (SSI) disability benefits in 2013, about 50% were disabled primarily due to a mental disorder. An increase in the number of children who are recipients of SSI benefits due to mental disorders has been observed through several decades of the program beginning in 1985 and continuing through 2010. Nevertheless, less than 1% of children in the United States are recipients of SSI disability benefits for a mental disorder.

At the request of the Social Security Administration, Mental Disorders and Disability Among Low-Income Children compares national trends in the number of children with mental disorders with the trends in the number of children receiving benefits from the SSI program, and describes the possible factors that may contribute to any differences between the two groups. This report provides an overview of the current status of the diagnosis and treatment of mental disorders, and the levels of impairment in the U.S. population under age 18. The report focuses on 6 mental disorders, chosen due to their prevalence and the severity of disability attributed to those disorders within the SSI disability program: attention-deficit/hyperactivity disorder, oppositional defiant disorder/conduct disorder, autism spectrum disorder, intellectual disability, learning disabilities, and mood disorders. While this report is not a comprehensive discussion of these disorders, Mental Disorders and Disability Among Low-Income Children provides the best currently available information regarding demographics, diagnosis, treatment, and expectations for the disorder time course - both the natural course and under treatment.

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