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Suggested Citation:"1 Introduction." 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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1

Introduction

BACKGROUND

The Social Security Administration (SSA) pays disability benefits to children with disabilities in low-income households through the Supplemental Security Income (SSI) program. The SSI program, created in 1972, is designed to provide monetary support to individuals with disabilities with limited income and resources. Out of the approximately 73.6 million children under age 18 living in the United States, every month approximately 1.8 percent of them, or 1.3 million children, receive SSI benefits (U.S. Census Bureau, 2014). There are approximately 63 million (in 2013) total recipients of Social Security and SSI payments in the United States (SSA, 2013). Of those 63 million individuals receiving benefits administered by the SSA, 2 percent are children receiving SSI (SSA, 2013). In 2012 the annual federal payments for SSI children totaled approximately $9.9 billion, or approximately 19.6 percent of all payments made to the SSI population ($51 billion), 5.5 percent of all disability benefits administered by the SSA ($191 billion), and 1.2 percent of all payments ($840 billion) administered by the SSA (SSA, 2013).

As has been the case with other entitlement programs, there has been considerable and reoccurring interest in the growth, effectiveness, accuracy, and sustainability of the SSI program for children. Since 2010 Congress and the media have posed questions about the changes observed in the SSI program involving pediatric and adolescent mental disorders. The attention paid to this issue has included periodic coverage in the press and, subsequently, consideration in congressionally directed studies and hearings.

Suggested Citation:"1 Introduction." 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.
×

For example, in December 2010 the Boston Globe published a series of articles by Patricia Wen that described the experiences and challenges of families that either were currently receiving or else sought to become eligible to receive SSI benefits for their children.1 In this series of articles, Wen covered a range of issues, including the growth of the SSI program for children and the increasing number of children receiving benefits for behavioral, mental, or learning disorders. The articles also questioned the influence of medication use in the determination of eligibility, the impact of the SSI benefits on long-term outcomes for recipients, and the role of SSI within the broader system of public benefits. Additional related press attention included an editorial article by Nicholas Kristoff in the New York Times2 in December 2012, and an investigative piece by Chana Joffe-Walt for NPR3 in March 2013. These articles suggested that the growth of the disability benefit program, and in particular growth in the SSI program for children with mental disorders, may not be helpful to recipients and their families, and may be the result of incentives that are not related to increases in the true prevalence of disability in children.

Partially in response to the issues raised in the Boston Globe series, in early 2011 several members of Congress directed the U.S. Government Accountability Office (GAO) to conduct an assessment of the SSI program for children. Congressional members instructed the GAO to assess three aspects of the SSI program for children with disabilities: (1) trends in the rate of children receiving SSI payments due to mental impairments over the past decade; (2) the role that medical and nonmedical information, such as medication use and school records, plays in the initial determination of a child’s eligibility; and (3) steps that SSA has taken to monitor the continued medical eligibility of these children (GAO, 2012). The GAO assessment was conducted from February 2011 to June 2012. Midway through the GAO assessment, on October 27, 2011, the Subcommittee on Human Resources of the House Ways and Means Committee convened a hearing on SSI for children, including an interim report by the GAO on its findings regarding the SSI program for children.

The GAO found that the number of children making claims for and receiving SSI benefits based on mental impairments had increased. Between 2000 and 2011, the number of children applying for SSI benefits increased from 187,052 to 315,832; of these applications, 54 percent were denied

_________________

1 “The Other Welfare,” available at http://www.boston.com/news/health/specials/New_Welfare (accessed May 7, 2015).

2 “Profiting from a Child’s Illiteracy,” available at http://www.nytimes.com/2012/12/09/opinion/sunday/kristof-profiting-from-a-childs-illiteracy.html (accessed May 7, 2015).

3 “Unfit for Work: The Startling Rise of Disability in America,” available at http://apps.npr.org/unfit-for-work (accessed May 7, 2015).

Suggested Citation:"1 Introduction." 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.
×

(GAO, 2012). In addition, the GAO found that mental impairments constituted approximately 65 percent of all child SSI allowances and that the three most prevalent primary mental impairments for children found eligible were attention deficit hyperactivity disorder (ADHD), speech and language delays, and autism/developmental delays (GAO, 2012). From December 2000 to December 2011, the number of children receiving SSI benefits for mental disorders increased by almost 60 percent, from approximately 543,000 to approximately 861,000 (GAO, 2012). Secondary impairments were present for many of those found medically eligible. GAO also estimated that, in 2010, 55 percent of allowances had an accompanying secondary impairment recorded. Of those secondary impairments recorded, 94 percent were mental disorders (GAO, 2012).

In the report, the GAO suggested that several factors may contribute to changes observed in the size of the SSI program for children, including

  • Fewer children leaving the disability program prior to age 18;
  • Increased numbers of children living in poverty in the United States;
  • Increased awareness and improved diagnosis of certain mental impairments;
  • A focus on identifying children with disabilities through public school special education services; and
  • Increased health care insurance coverage of previously uninsured children.

In addition to these factors, the rates of disability from mental health disorders in children may have increased (Halfon et al., 2012). In the chapters that follow, this report will address these factors as well as other factors that may also contribute to the changes observed in the SSI program for children. Chapter 3 briefly addresses the rates of children leaving the disability program prior to age 18. Chapter 5 is devoted to addressing the effect of poverty on childhood disability. Part II of the report (Chapters 6 through 11) will review diagnostic criteria and guidelines for the assessment and treatment of major mental disorders.4Part III of the report (Chapters 12 through 17) will present findings on the prevalence trends of specific mental disorders and will address some potential factors that may affect prevalence trends, including awareness and diagnosis of the condition, the role of special education services for certain mental disorders, and how rates of diagnosis mental disorders in children may be related to access to health care insurance.

_________________

4 Major mental disorders include attention deficit hyperactivity disorder, autism spectrum disorders, intellectual disabilities, mood disorders, learning disorders, oppositional defiant disorder, and conduct disorders.

Suggested Citation:"1 Introduction." 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.
×

BOX 1-1
Statement of Task

The task order objective is to

  • Identify pasta and current trendsb in the prevalence and persistence of mental disordersc for the general U.S. population under age 18 and compare those trends to trends in the SSI childhood disability population.
  • Provide 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.

To accomplish this objective, the committee shall

  1. Compare the national trends in the number of children with mental disorders under age 18 with the trends in the number of children receiving SSI on the basis of mental disorders and describe the possible factors that may contribute to any differences between the two groups.
  2. Identify current professional standards of pediatric and adolescent mental health care and identify the kinds of care documented or reported to be received by children in the SSI childhood disability population.

To perform the above activities, the committee shall do the following with respect to the two child populations:

  1. Identify national trends in the prevalence of mental disorders in children and assess factors that influence these trends (for example, increased awareness or improved diagnosis).
  2. Identify the average age of onset and the gender distribution and assess the levels of impairment within age groups.
  3. Assess how age, development, and gender may play a role in the progression of some mental disorders.
  4. Identify common comorbidities among pediatric mental disorders.
  5. Identify which mental disorders are most amenable to treatment and assess typical or average time required for improvement in mental disorder to manifest following diagnosis and treatment.
  6. Identify professionally accepted standards of care (such as diagnostic evaluation and assessment, treatment planning and protocols, medication management,d and behavioral and educational interventions) for children with mental disorders.

___________

a For at least the last 10 years.

b In the context of current trends in child health and development, and in pediatric and adolescent medicine.

c Including disorders such as attention deficit and hyperactivity disorder, autism and other developmental disorders, intellectual disability, learning disorders, and mood and conduct disorders.

d Including appropriateness of how medications are being prescribed.

Suggested Citation:"1 Introduction." 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.
×

A review of trends in the prevalence of mental disorders in children in the United States was outside of the scope of the GAO report. However, a review of national trends would provide essential and fundamental information for considering changes in the SSI program for children. Therefore, SSA asked the Institute of Medicine (IOM) to review the national prevalence rates and trends of mental disorders in individuals under the age of 18, how those rates compare to the trends observed in the SSI program, what factors might be related to any changes and differences, and the characteristics of mental disorders in children in the United States, including how childhood and adolescent mental disorders are treated. See Box 1-1 for the committee’s statement of task. This report represents the committee’s efforts to provide the SSA insight into changes in the number of children who are diagnosed with mental disorders nationally relative to changes in the number of children who receive SSI benefits for mental disorders, based on the best data currently available.

STUDY CHARGE, SCOPE, AND APPROACH

Study Charge

In 2013 the SSA Office of Disability Policy requested that the Institute of Medicine convene a consensus committee to (1) identify past and current trends in the prevalence and persistence of mental disorders for the general U.S. population under age 18 and compare those trends to trends in the SSI childhood disability population, and (2) provide 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. See Box 1-1 for the committee’s statement of task.

Study Scope

The statement of task from the SSA is narrowly focused. The agency asked for the best available current information about mental health conditions of children that are relevant to the SSI program, including specifically: demographics, diagnosis, treatment, and expectations for the disorder time course, both the natural course and under treatment. The agency also asked the committee to provide an analysis of prevalence trends for these disorders in the U.S. childhood population and to compare SSI data for childhood mental health determinations and recipients with data of the U.S. childhood population. Each section of this report has been developed to meet a specific requirement of the statement of task. This report is not intended to be a comprehensive discussion of these mental disorders in children, but rather to provide the SSA with basic information directly relevant

Suggested Citation:"1 Introduction." 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.
×

to the administration of the SSI program for children with mental disorders. The following paragraphs describe how the committee used the statement of task as a guide to complete its review and analysis and to determine whether to include or exclude related or noteworthy topics.

Inclusion and Exclusion of Mental Disorders for Review Within the Report

There is substantial variation in the rates of pediatric and adolescent mental disorders within the SSI program, ranging from 0 percent for substance abuse disorders to approximately 21.9 percent for ADHD (unpublished data set provided by the SSA). Rather than review every mental disorder category in the SSI program, the committee made the decision to focus its descriptive and analytic work on the most frequent SSI determinations by primary diagnosis.

Although claims for “speech and language impairment” constitute a significant proportion (21.3 percent) of the disability observed in the SSI program for children with primary mental disorders, this diagnostic category has been specifically excluded from review in this report at the direction of the SSA (unpublished data set provided by the SSA). The SSA determined that a separate committee is needed to investigate trends in the rates of speech and language impairment in children, and it has engaged an independent IOM consensus report committee to complete that work.

After excluding speech and language impairment, the top 10 mental disorder impairment codes by allowance, at the initial level,5 arranged from those with the highest to the lowest frequency in 2013, are

  1. Attention deficit disorder/attention deficit hyperactivity disorder (ADHD) — 21.9 percent of all mental disorder allowances in 2013
  2. Autistic disorder and other pervasive developmental disorders (ASD) — 21.19 percent
  3. Intellectual disability (ID) — 11.29 percent
  4. Mood disorder — 7.61 percent
  5. Learning disorder (LD) — 4.09 percent
  6. Organic mental disorders — 2.98 percent
  7. Oppositional defiant disorder (ODD) — 2.78 percent
  8. Anxiety related disorders — 1.78 percent
  9. Borderline intellectual function (BIF) — 1.4 percent
  10. Conduct disorder (CD) — 1.33 percent

_________________

5 Unpublished data set provided by the SSA.

Suggested Citation:"1 Introduction." 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.
×

The review and analysis of trends in the SSI program for mental disorders will include only these 10 major disorders.

Furthermore, the in-depth review of the clinical characteristics, treatment, and trends in prevalence will be focused on six mental disorders that are of significant relevance to the SSI program: ADHD, ASD, mood disorders, ID, LD, and ODD/CD. These disorders have been specifically selected for in-depth review and analysis because of the high rates of disability caused by these disorders and because the rates of these diagnoses have been subject to change over the past decade. Two disruptive behavior disorders of childhood, ODD and CD, have been grouped and are specifically selected for in-depth review because of the high rate of co-occurrence with ADHD and the severity of impairment that is frequently the result of these conditions. Organic mental disorders have been excluded from further in-depth review because the term “organic” mental disorders is no longer recognized as a meaningful diagnostic category and the use of the term in practice has been in decline (Ganguli et al., 2011). Developmental and emotional disorders of infants are excluded because the diagnosis of mental disorders at that stage of early childhood development is inconsistent and involves disorders and impairments that are distinct from the mental disorders of that occur later in childhood development. Although anxiety disorders occur with some frequency in the under-18 population, because this diagnosis represents a relatively small percentage of SSI allowances, it is excluded from review in this report. BIF is not reviewed because the rates of the condition are relatively low and have not exhibited significant change over the time period of interest.

The other remaining mental disorder impairment codes6 excluded entirely from review and analysis in this report are

  1. Schizophrenic/delusional (paranoid), schizo-affective, and other psychotic disorders — 1.05 percent
  2. Developmental and emotional disorders of newborn and younger infants (under 1 year of age) — 0.96 percent
  3. Personality disorders — 0.28 percent
  4. Eating and tic disorders — 0.05 percent
  5. Somatoform disorders — 0.02 percent
  6. Psychoactive substance dependence disorders (drugs)* — 0 percent
  7. Psychoactive substance dependence disorders (alcohol)* — 0 percent *Substance dependence disorders cannot be allowed as a primary impairment by law.

_________________

6 Unpublished data set provided by the SSA.

Suggested Citation:"1 Introduction." 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.
×

Assessment of Childhood Poverty Rates

A criterion for childhood SSI benefit eligibility is a documentation of the family’s poverty status. Therefore, a significant part of this report is devoted to exploring the interaction of childhood poverty rates and the changes observed in the SSI program for children with mental disorders. Additional data are provided in this report that allow for comparisons and analyses of SSI determination, allowances, and the total number of childhood SSI recipients as a percentage of impoverished populations within the United States. This discussion can be found in Chapter 5 of this report.

Limitation of Review of the SSI Program to Children Under 18 Years Old

As noted in the statement of task, this review is limited to studying children under age 18. This is because children under age 18 are the population served by the SSI childhood program. Once they reach age 18, SSI recipients must be reevaluated to see if they qualify to receive SSI disability benefits as an adult.

Exclusion of In-Depth Analysis of State-to-State Variation in the SSI Program

The adjudication of applications for SSI benefits is managed at the state level. Through an examination of the evidence, the committee became aware that there is considerable variation from state to state in the number and rate of applications leading to determinations as well as in the rate of allowances. However, state-to-state variation does not affect the national-level prevalence and trends data required to respond to the SSA statement of task for the committee. Some state-level data are included in this report to provide some overall perspective, but the committee does not explore the potential factors contributing to state-to-state variation in the rates of SSI disability. The discussion of state-to-state variation can be found in Chapter 4.

Limitation of the Use of Recommendations Within the Report

The committee was not asked to provide recommendations on the SSI program for children, but rather it was tasked with gathering information on and reporting on the current state of knowledge concerning the diagnosis, prognosis, and treatment of mental disorders in children as well as on trends in the prevalence of mental disorders in children. This report will document those efforts and communicate the consensus findings and

Suggested Citation:"1 Introduction." 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.
×

conclusions of the committee, which were based on the information gathered and analyzed.

Study Approach

The study committee included 12 members with expertise in pediatric and adolescent psychiatry, pediatric and adolescent psychology, pediatrics, and epidemiology; see Appendix H for biographies of the committee members. The study committee also benefited from the participation and input of two additional liaisons from the concurrent IOM Standing Committee of Medical Experts to Assist Social Security on Disability Issues, who offered specialized expertise in disability policy as well as in pediatric disabilities and chronic disease.

A variety of sources informed the committee’s work. The committee met in person six times; three of those meetings included public workshops intended to provide the committee with input from a broad range of experts and stakeholders, including experts in childhood disability and public benefit policy, examiners and executives from the SSA Disability Determination Services, and childhood disability and mental disorder advocacy organizations. In addition, the committee conducted a review of the literature in order to identify the most current research on the etiology, epidemiology, and treatment of pediatric mental disorders. Finally, the committee commissioned a supplemental study using Medicaid data to create an approximate national comparison group for the SSI childhood population. (See Chapter 18 and Appendixes F and G for detailed information about this study.)

Related IOM Reports of Interest

The following are IOM reports with related topics that may be of interest:

  • The Future of Disability in America (2007)
  • Improving the Social Security Disability Decision Process (2007)
  • Preventing Mental, Emotional and Behavioral Disorders Among Young People: Progress and Possibilities (2009)

Structure of the Report

Part I of the report focuses on the background and context of the SSI disability benefit program for children: Chapter 2 covers the SSI program for children; Chapter 3 discusses national level trends in the SSI program for children with mental disorders, from 2004–2013; and Chapter 4 looks

Suggested Citation:"1 Introduction." 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.
×

at state variation in the SSI program, while Chapter 5 discusses poverty and childhood disability.

Part II of the report covers clinical characteristics of the six selected mental disorders: ADHD (Chapter 6), ODD and CD (Chapter 7), ASD (Chapter 8), ID (Chapter 9), LD (Chapter 10), and mood disorders (Chapter 11).

Part III of the report focuses on the trends in prevalence of the six selected mental disorders in the general population, in Medicaid, and in the SSI program for children; ADHD (Chapter 12), ODD/CD (Chapter 13), ASD (Chapter 14), ID (Chapter 15), LD (Chapter 16), and mood disorders (Chapter 17).

Finally, Part IV of the report discusses the results of the Medicaid Analytic eXtract (or MAX) study, which was commissioned by the committee and performed by Rutgers University.

REFERENCES

Ganguli, M., D. Blacker, D. G. Blazer, I. Grant, D. V. Jeste, J. S. Paulsen, R. C. Petersen, and P. S. Sachdev. 2011. Classification of neurocognitive disorders in DSM-5: A work in progress. American Journal of Geriatric Psychiatry 19(3):205–210.

GAO (U.S. Government Accountability Office). 2012. Supplemental Security Income: Better management oversight needed for children’s benefits. GAO-12-497. http://purl.fdlp.gov/GPO/gpo25551 (accessed May 7, 2015).

Halfon, N., A. Houtrow, K. Larson, and P. W. Newacheck. 2012. The changing landscape of disability in childhood. The Future of Children 22(1):13–42.

SSA (Social Security Adminstration). 2013. Annual statistical supplement to the Social Security Bulletin, 2012. www.ssa.gov/policy/docs/statcomps/supplement/2012/supplement12.pdf (accessed May 7, 2015).

U.S. Census Bureau. 2014. Current population reports: Number of children (in millions) ages 0–17 in the United States by age, 1950–2014 and projected 2015–2050. www.childstats.gov/americaschildren/tables/pop1.asp (accessed May 7, 2015).

Suggested Citation:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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:"1 Introduction." 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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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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