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
THE NATIONAL ACADEMIES PRESS
Washington, DC
www.nap.edu
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
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.
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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
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
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
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.
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.
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
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
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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.
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.
Contents
2 The SSI Program for Children
3 National-Level Trends in the SSI Program for Children with Mental Disorders, 2004–2013
4 State Variation in the SSI Program for Children
5 Poverty and Childhood Disability
PART II: CLINICAL CHARACTERISTICS OF SELECTED MENTAL DISORDERS
6 Clinical Characteristics of Attention Deficit Hyperactivity Disorder
7 Clinical Characteristics of Oppositional Defiant Disorder and Conduct Disorder
10 Clinical Characteristics of Learning Disabilities
11 Clinical Characteristics of Mood Disorders
PART III: PREVALENCE OF SELECTED MENTAL DISORDERS
12 Prevalence of Attention Deficit Hyperactivity Disorder
13 Prevalence of Oppositional Defiant Disorders and Conduct Disorder
14 Prevalence of Autism Spectrum Disorder
15 Prevalence of Intellectual Disabilities
16 Prevalence of Learning Disabilities
17 Prevalence of Mood Disorders
PART IV: MEDICAID ANALYTIC EXTRACT STUDY
18 Medicaid Analytic eXtract Study
A Deeming Eligibility Chart for Children
B SSA Childhood Mental Disorders Listing of Impairments
C The Listing of Impairments—Overview
D Surveys and Surveillance Systems That Collect Data on Mental Disorders Among Children
F Medicaid Analytic eXtract Methods
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 |
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 |
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 |