Summary

Since 1975 the Social Security Administration (SSA) has paid benefits to children with disabilities in low-income households through the Supplemental Security Income (SSI) program. In 2013 there were approximately 1.3 million children who received SSI disability benefits. Approximately 50 percent of those recipients had disabilities primarily due to a mental disorder. An increase in the number of children who were recipients of SSI benefits due to mental disorders has been observed from 1985 through 2010. Less than 1 percent of children in the United States are recipients of SSI benefits for a mental disorder.

There has been considerable and recurring interest in the growth and sustainability of the SSI program for children. In response, the SSA asked the Institute of Medicine (IOM) to identify trends in the prevalence of mental disorders among children in the United States and to compare those trends to changes observed in the SSI childhood disability population. The IOM was also tasked with providing an overview of the diagnosis and treatment of mental disorders in children, and of impairments caused by mental disorders in children. Within these broad objectives, the SSA articulated details for the completion of the task order, including two goals and six tasks. Box S-1 contains the committee’s statement of task.

In following the statement of task and the SSA’s direction, this consensus committee report includes evidence-based findings and conclusions concerning trends in the prevalence of mental disorders in children and also the diagnosis and treatment of these children. Of note, the committee’s charge did not include a review of the SSA’s standards and procedures for determination of disability and for the classification of impairments in the

SSI program. As a result, this report does not contain recommendations to the SSA regarding the administration of the SSI program. However, the committee makes several conclusions to address issues or limitations identified in the process of conducting this study, including the availability of data on children with disabilities, and policy issues that are out of this committee’s scope of work.

This summary contains the major findings and conclusions of the committee. Since there are a large number of findings and conclusions, this summary begins with six overarching “Key Conclusions” that are informed by all the evidence compiled in this report, and summarize the major findings and conclusions of this study (see Box S-2). The remainder of the summary includes findings and conclusions specific to each element of the task order, including trends observed in the SSI program for children with mental disorders, clinical characteristics of mental disorders in children, and estimates of the prevalence of mental disorders in children.

NATIONAL TRENDS IN THE SSI PROGRAM FOR CHILDREN WITH DISABILITIES

The committee conducted a review of the trends in the number and proportion of all children in the United States who were allowed and received SSI disability benefits nationally, from 2004 to 2013. This analysis included a review of the trends in the number of children who received SSI disability benefits for all causes as well as reviews of the trends in childhood disability attributed to 10 major mental disorders, both individually and in aggregate. The 10 major mental disorders selected for review included attention deficit hyperactivity disorder (ADHD), autism spectrum disorder (ASD), intellectual disability (ID), mood disorders (depression and bipolar disorder), learning disorder (LD), organic mental disorders, oppositional defiant disorder (ODD), conduct disorder (CD), anxiety related disorders, and borderline intellectual function. The committee’s findings and conclusions based on this review are the following:

Conclusions

• Overall, the likelihood that an application for benefits was allowed on the basis of a mental disorder decreased from 2004 to 2013. The proportion of all disability determinations for the major mental disorders that resulted in a finding of disability decreased from year to year.
• Generally, each year, the number of suspensions, terminations, and age-18 transitions out of the child SSI program was less than the

• number of allowances and “reentries” from suspension, which has led to increasing numbers of total recipients.

• A substantial proportion of child disability allowances are on the basis that applicants “functionally equal” the SSA’s “Listing of Impairments.”¹ There is a substantial pool of children who experience severe disability due to conditions that are not formally described in the Listings and who subsequently cannot be reliably or accurately characterized using the Listings alone. Therefore, the impairments typically associated with primary diagnostic listing may not be the sole impairments experienced by the child. As a consequence, it is not possible to precisely identify the pool of children who are SSI recipients based on a specific mental disorder. That said, the committee concluded that the data contained in this report for each of the 10 major childhood mental disorders arethe best available approximation of specific diagnosis prevalence in the SSI beneficiary population.

Findings

• In 2013, approximately 1.8 percent of U.S. children (ages 0–18) were recipients of SSI benefits. This had increased from 1.35 percent in 2004.
• Approximately half of all children who are recipients of SSI disability benefits receive benefits due to mental disorders. The percentage of all U.S. children who were recipients of SSI disability benefits for the 10 major mental disorders grew from 0.74 percent in 2004 to 0.89 percent in 2013.
• Among the children who applied for SSI, the proportion whose SSI applications were allowed (i.e., met SSI disability criteria) each year for all disabilities did not increase from 2004 to 2013.
• The proportion of children whose applications were allowed annually for the 10 major mental disorders out of all allowances for children did not increase. Approximately half of all allowances for child disability benefits were for the 10 major mental disorders.
• The number of suspensions and terminations varied considerably over the period from 2004 to 2013. Changes in the number of children who annually are found to no longer have a severe disability contributed to the variation in number of suspensions and terminations.

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¹ The “Listing of Impairments” is a regulatory list of medical conditions and medical criteria produced by the SSA that serve as a standard for a determination of disability.

• Trends in the number and proportion of allowances and recipients varied by type of mental disorder. Some diagnoses, such as ASD, showed substantial increases over the period. Some, such as intellectual disability (ID), showed considerable decreases. For each year from 2004 to 2013, the ADHD category was the largest in terms of the numbers and proportions of child SSI disability allowances and recipients.

STATE-TO-STATE VARIATION OBSERVED IN THE SSI PROGRAM FOR CHILDREN WITH MENTAL DISORDERS

The data requested from the SSA by the committee included the numbers of SSI child disability benefit allowances and recipients for mental disorders within each state. Because the SSI program is administered at the state level, the committee concluded that a review of state-level data would help to ascertain whether national trends generally reflect state trends or whether the national trend obscures variations that occur at the state level. Based on the review of state-specific SSI program data, the committee concluded the following:

Conclusion

• Variation among states indicates that the likelihood of a child with a disability becoming a recipient of SSI varies depending on the state of residence. Although studies have shown state variations in prevalence rates for children’s mental health disorders, these prevalence variations cannot fully explain differences in state allowances or recipients.

Finding

• There is considerable state-to-state variation in the rates at which children are allowed SSI disability benefits for mental disorders. There is also variation in the rate at which children receive SSI for mental disorders.

POVERTY AND CHILDHOOD DISABILITY

SSI eligibility criteria require that a child have a disability and come from a low-income household. The committee observed that these eligibility criteria select for a high-risk population of children due to the interaction of poverty and disability. As a result, the committee decided that an analysis of the effect of poverty on disability and the SSI program would be necessary

to understand and effectively characterize the unique population of children who are potentially eligible to receive SSI benefits. Based on this review, the committee’s findings and conclusions are the following:

Conclusions

• Poverty is a risk factor for child disability, including disability associated with mental disorders. At the same time, child disability is a risk factor for family poverty. In times of economic hardship in the United States, more children with mental disorder–related disabilities will qualify for benefits because they meet the income eligibility threshold.
• Children living in poverty are more likely than other children to have mental health problems, and these conditions are more likely to be severe. Low-income families containing a child with a disability may be particularly vulnerable in times of economic hardship. Access to Medicaid and income supports via the SSI disability program may improve long-term outcomes for both children with disabilities and their families.

Findings

• The total number of U.S. children changed very little during the 2004–2013 decade, but both the number and percentage of all children who lived in impoverished households increased. The major increase occurred from 2008 to 2010 and coincided with a time of economic recession.
• The biggest percentage increase of children in in low-income households between 2004 and 2013 occurred in those families with incomes less than 100 percent of the federal poverty level (FPL). A small increase was documented for children in families whose income was between 100 percent and 200 percent of the FPL.
• The proportion of all children who are identified as having a disability in the United States has steadily increased each decade since the 1960s.
• The definition of disability has evolved to encompass a variety of factors that influence impairment due to biomedical factors and contextual factors such as poverty as well as functional limitations and barriers to effective participation in usual childhood activities.
• The number of families with an SSI recipient who are living below the FPL when SSI benefits are not included in calculating income increased by 46 percent between 2002 and 2010. In 2010 more than 45 percent of those families were raised above the FPL after

• receiving SSI benefits, potentially reducing both economic stresses and the risk of worsening child disability.

• Neither the total number of child mental disorder allowances of SSI benefits nor the rate of allowances among children in poverty increased during the 2004–2013 decade. In fact, the total number of allowances was approximately 10 percent lower in 2013 than in 2004.
• Despite the decrease in allowances, the number of recipients increased steadily during the 2004–2013 decade. Total recipients as a percentage of all children in households below 200 percent of the FPL increased by approximately 11 percent. Recipient rates increased for all levels of poverty.
• Allowance and recipient rates per 100,000 children were higher for families below the FPL than for those above, and they increased with progressively more severe levels of poverty.

CLINICAL CHARACTERISTICS OF MENTAL DISORDERS IN CHILDREN

Pursuant to the statement of task, the committee conducted focused reviews of the clinical characteristics and treatment of the six selected mental disorders, chosen due to their prevalence and the severity of disability attributed to those disorders within the SSI disability program. These include ADHD, ODD/CD, ASD, ID, LD, and mood disorders. Findings drawn from reviews of each disorder are summarized below.

Findings Regarding the Clinical Characteristics of ADHD

• Diagnosis requires a detailed, comprehensive clinical assessment. Adherence to diagnostic guidelines is variable. There are no laboratory tests to identify ADHD.
• The diagnosis of ADHD usually occurs during the early elementary school years.
• Boys are diagnosed with ADHD approximately twice as frequently as girls.
• The functional impairments caused by ADHD may change as a child matures; however, a childhood diagnosis of ADHD can often mean persistent impairments into adulthood.
• ADHD co-occurs with another mental, emotional, or behavioral disorder very frequently—in approximately 70 percent of cases. Children with ADHD and co-occurring conditions have more significant functional impairments.

• Evidence-based treatments benefit many children with ADHD. However, there is also evidence that many children with ADHD do not receive optimal, evidence-based treatment.

Findings Regarding the Clinical Characteristics of ODD and CD

• The diagnosis of ODD or CD requires a comprehensive diagnostic evaluation. There are no biological markers for ODD or CD.
• There is insufficient evidence of trends in the distribution of ODD and CD by either sex or age. Differences in the rate of diagnosis by sex have not been uniformly documented.
• ODD and CD tend to be persistent problems. The conversion of ODD to CD may account for at least some of the remissions of ODD cited in the literature.
• The disruptive behavior disorders of childhood (ODD and CD) frequently co-occur with other mental disorders in children, in particular, ADHD, mood disorders, and anxiety disorders. The co-occurrence of these disorders with other mental disorders causes significant functional impairment in many children who are SSI recipients.
• Early preventive interventions show promise for reducing ODD occurrence. Psychosocial interventions involving both parents and child are documented to provide the greatest therapeutic benefit.

Findings Regarding the Clinical Characteristics of ASD

• The diagnosis of ASD requires a comprehensive behavioral and medical evaluation by experts, including a clinical evaluation and the use of disorder-specific screening and diagnostic instruments. The role of genetic testing is limited, apart from a small number of well-characterized single-gene conditions.
• The age of onset for ASD is in early childhood. Individuals diagnosed with ASD are likely to have functional impairments throughout their lives; however, the severity of these impairments can vary greatly, from profound to relatively mild. The diagnosis of ASD can be made in most children with great certainty by age 3.
• ASD is more common in males by more than three- to fivefold.
• Unlike other mental disorders, ASD is diagnosed less often in children living in poverty, although most population studies indicate equal rates among children living in low-income households, suggesting disparities in access to early identification.

• ASD is associated with an increased risk of intellectual disability.
• Significant impairment usually persists into adolescence and adulthood.
• Early diagnosis and the application of evidence-based interventions increase the likelihood that a child will have better outcomes and reduced functional impairments. The goals of treatment are to minimize disruptive effects and to improve adaptive functioning.

Findings Regarding the Clinical Characteristics of IDs

• Historically, intellectual disability has been defined by significant cognitive deficits, typically established by the testing of IQ and adaptive behaviors. There are no laboratory tests for ID; however, many specific causes and genetic factors for ID can be identified through laboratory tests.
• Males are more likely than females to be diagnosed with ID. Poverty is a risk factor for ID, especially for mild ID.
• The functional impairments associated with ID are generally lifelong. However, there are functional supports that may enable an individual with ID to function well and participate in society.
• As a diagnostic category, IDs include individuals with a wide range of intellectual functional impairments and difficulties with daily life skills. The levels of severity of intellectual impairment and the need for support can vary from profound to mild.
• Comorbidities, including behavioral disorders, are common.
• Treatment usually consists of appropriate education and skills training, supportive environments to optimize functioning, and the targeted treatment of co-occurring psychiatric disorders.

Findings Regarding the Clinical Characteristics of LDs

• LDs are diagnosed in educational and clinical settings. Standardized instruments are available as diagnostic aids.
• The diagnosis is usually made in school-aged children.
• Boys are more often identified as having an LD than girls.
• Academic and employment success can be challenging for those with LDs.
• Comorbidities are common and add to the likelihood of functional impairment.
• Appropriate accommodations in educational settings enhance the opportunities for children with LDs to achieve academically and develop real-life skills that allow them to do well as adults.

Findings Regarding the Clinical Characteristics of Mood Disorders

• Diagnosis requires a comprehensive psychiatric diagnostic evaluation. Screening tools are available to detect symptoms of depression, particularly in adolescents. There are no well-established laboratory tests for mood disorders.
• Mood disorders of childhood may occur in children of all ages. However, the risk of mood disorders increases during adolescence, especially among girls. A younger age of onset is a risk factor for increased severity and duration.
• While symptoms may wax and wane, mood disorders cause significant functional impairment that often persists or recurs through childhood and into adulthood.
• Mood disorders frequently co-occur with other mental disorders.
• There is evidence for the effectiveness of medication treatment and psychotherapies for mood disorders. Improvements in functional impairments are enhanced with a combination of evidence-based psychotherapy and medication.
• Bipolar disorder in children and youth is classified by the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5) as a diagnosis distinct from depression. Severe impairments in functioning are very common and frequently persist, even with treatment.

PREVALENCE OF MENTAL DISORDERS IN CHILDREN

As prescribed in the task order, the committee completed focused reviews of prevalence estimates for six major mental disorders from SSI data, from the general population of youth, and from Medicaid childhood populations. Findings and conclusions drawn from reviews of each disorder are summarized below.

Prevalence of ADHD

Conclusions

• The available evidence on the prevalence of ADHD in children shows (1) increasing rates where diagnoses are based on actual or parent-reported clinician judgment and (2) no evidence of increasing rates (from a meta-regression analysis) where diagnoses are based on parent- and/or child-reported symptoms. The implication of these findings is that the increase in ADHD observed within the SSI program is consistent with an increase in the diagnosis of

• ADHD in the general population, but not necessarily an increase in the rates of children who have symptoms that meet various criteria for ADHD.

• The frequency of ADHD diagnoses relative to that of other mental disorders (and, in particular, mood disorders and oppositional defiant disorder/conduct disorder) is greater in the SSI population than in the general population. A possible explanation is that ADHD serves as a catch-all diagnostic category for children with multiple and unspecified mental disorders within the SSI program.
• Based on 2012 estimates of the number of children below 200 percent of the FPL and the prevalence of moderate to severe ADHD in children nationally, it appears that only a small proportion of children who were potentially eligible for SSI benefits due to ADHD were in fact recipients.

Findings

• Prevalence estimates for ADHD in the general population of youth fall into the 5 percent or greater range, depending on the source of the estimate and survey methodology.
• Estimates of the prevalence of ADHD that apply diagnostic criteria based on assessment of a child’s symptoms are lower than estimates derived from parent reports of health care provider diagnoses of ADHD. There is no evidence of an increase in the prevalence of ADHD based on assessments of a child’s symptoms; however, there is evidence of an increase in the frequency of diagnoses for ADHD based on parent report and from Medicaid billing records.
• The increase in the prevalence of ADHD diagnoses found by the national surveys based on parent interviews approaches that of the increase in the number of youth with ADHD in the SSI recipients group (approximately 60 percent over 10 years). Similarly, the cumulative percentage increase in the percentage of ADHD diagnoses in child Medicaid enrollees from 2004 to 2010 is similar to the increase in the percentage of poor children who are recipients of SSI benefits for ADHD.

Prevalence of ODD and CD

Conclusion

• Based on rough approximations of the prevalence of moderate to severe behavioral and conduct problems among children in households below 200 percent of the FPL, in 2011 and 2012 only an

Findings

• Estimates of the prevalence of ODD and CD range from 3 to 5 percent. A recent meta-analysis estimated the combined prevalence of ODD/CD to be 6.1 percent.
• Currently there are no population- or national-level data on the prevalence trends of ODD and CD among U.S. children.
• While ODD/CD constitutes a small number of mental disorder cases in SSI, from 2004 to 2013 the rates of allowances among children in low-income households for ODD increased slightly, while the rates of allowances among poor children for CD decreased. Over the same period, the rate of SSI recipients for both ODD and CD increased.

Prevalence of ASD

Conclusion

• Based on current prevalence estimates of autism and on estimates of the number of children in low-income households in this country, there is significant evidence that not all children in low-income households who would be eligible for SSI benefits due to ASD are currently recipients of these benefits. Depending on the prevalence estimate, only 20 to 50 percent of potentially eligible children received SSI benefits. However, unlike the case with other mental disorders, the evidence shows higher rates of ASD identification in children in middle- and high-income households, and lower rates of identification among children in low-income households. This suggests ASD children may be under-identified and underestimated.

Findings

• Recent prevalence estimates for ASD in the general population under age 18 range from 1.5 to 2 percent.
• An increasing trend in the prevalence of ASD has been observed across all data sources, including national surveys, epidemiologic studies, special education service use counts, and Medicaid reimbursements. The trends in the rate of child SSI recipients for ASD among children in low-income households are consistent with

• trends in the rate of ASD observed in both the general population and others.

• There is evidence of diagnostic substitution between ASD and ID in both the general population data and SSI program data. From 2004 to 2013, decreases in the rate and number of recipients of SSI for ID were similar to decreases in the rate of special education service use for ID in the general population; significant increases in the rate and number of recipients of SSI for autistic disorder are similar to increases in the rate of special education services for ASD in the general population.
• The trend in ASD diagnoses among Medicaid-enrolled children was similar to general population trends between 2001 and 2010. The yearly prevalence estimates of ASD diagnoses among children enrolled in Medicaid were similar to estimates based on special education child counts, but lower than ASD prevalence estimates from surveillance and survey data for the general population.

Prevalence of IDs

Conclusion

• Rough estimates of the number of children in low-income households with moderate to severe ID suggest that less than 60 percent of children who are likely eligible for SSI benefits due to ID are recipients of these benefits.

Findings

• Estimates of the prevalence of ID in the general population have varied somewhat over time, but have remained largely unchanged. These estimates range from 8.7 to 36.8 per 1,000 children.
• The number of and proportion of children in low-income households who are receiving SSI benefits for ID is decreasing. The decreasing trend is consistent with trends observed in the rates of special education service utilization for children with ID and may relate to diagnostic substitution with ASD.
• The rates of children diagnosed with ID among all child Medicaid enrollees did not appear to decrease between 2001 and 2010. The percentage of children diagnosed with ID who are on Medicaid on the basis of SSI eligibility may have increased slightly.

Prevalence of LDs

Conclusions

• Rough estimates of the number of children in low-income households with moderate to severe LD suggest that less than 24 percent of children who are likely eligible for SSI benefits due to LD are recipients of these benefits.
• There is no evidence that the trends observed in the proportion of children receiving SSI benefits for LD are inconsistent with the prevalence trends observed in the general or Medicaid populations.

Findings

• Prevalence estimates for LD in the general population range between 5 and 9 percent.
• Prevalence in the general population is stable, but from 2003 to 2012 the number of children receiving special education services based on an LD diagnosis decreased.
• Within the SSI program, trends in both the number of LD allowances and the rate of LD allowances in children in low-income households is decreasing. From 2004 to 2013, the number of SSI recipients for LD was stable.
• Among children enrolled in Medicaid on the basis of SSI eligibility, the rate of children with an LD diagnosis appears to be increasing. Among all children enrolled in Medicaid, there does not appear to be an increase in the rates of LD diagnoses.

Prevalence of Mood Disorders

Conclusion

• Conservative estimates of the prevalence of moderate to severe depression among children and adolescents (i.e., 1 percent) applied to the population of these children and adolescents who are below 200 percent of the FPL suggest that only a small proportion, approximately 3 percent, of those who are potentially eligible for SSI benefits on the basis of mood disorders are actually recipients.

Findings

• Prevalence estimates for child and adolescent depression in the general population range from 2 to 8 percent. Because pediatric

• bipolar disorder is uncommon, additional research is needed to more robustly estimate the prevalence rates using standardized diagnostic criteria among children in nationally representative samples.

• The prevalence of depression among children and adolescents in the general population does not appear to be increasing. The trends in the prevalence of pediatric bipolar disorder remain unknown.
• From 2004 to 2013 the allowance rates for SSI benefits for mood disorders decreased, while the percentage of children in low-income households who were recipients of SSI benefits for mood disorders increased modestly.
• The trend for SSI mood disorder recipients is upward among both SSI and Medicaid enrollees.

PREVALENCE AND TREATMENT OF MENTAL DISORDERS IN CHILDREN ENROLLED IN MEDICAID

The committee concluded that another comparison population of children with mental disorders in low-income families would add value to its analysis of trends based on SSI data and would allow for an analysis of the types of treatments documented for children with mental disorders in the SSI population. Medicaid data are the most efficient source of continuously collected data that simultaneously include information on a child’s SSI status, mental disorder diagnoses, and health services utilization. The findings and conclusions from this study are summarized below.

Conclusions

• The number of ADHD diagnoses among all Medicaid enrollees in the study nearly tripled during the decade of our inquiry. Increases in SSI benefits for ADHD during this decade are therefore expected in view of this growth rate in the Medicaid population of children who have received paid Medicaid services.
• Child Medicaid enrollment increased from 2001 to 2010. The growing numbers of all Medicaid enrollees during the study period likely reflect increases in childhood poverty as well as policies that encouraged the enrollment of eligible children in Medicaid.

Findings

• The percentage of All Medicaid enrollees with a mental disorder diagnosis increased from 7.9 percent in 2001 to 11.1 percent in 2010, a growth rate similar to the increase observed for asthma

• diagnoses. The percentage of SSI Medicaid enrollees with a mental disorder diagnosis increased from 29.2 percent in 2001 to 38.6 percent in 2010.

• There are high rates of co-occurring or comorbid mental disorder diagnoses among children enrolled in Medicaid. The frequency of co-occurring mental diagnoses among children with disabilities enrolled in Medicaid is higher than the frequency of co-occurring mental disorder diagnoses in all children enrolled in Medicaid.
• The rates of treatment with medication, psychotherapy, or combinations of the two varied depending on the specific mental disorder diagnosis.
• All Medicaid enrollees with ADHD experienced increased rates of treatment with medications, psychotherapy, or a combination of the two. This increase suggests improving adherence to guidelines by providers serving the Medicaid population.
• The number of SSI Medicaid enrollees with ADHD with no recorded paid claims for treatment declined by almost 50 percent during the period, consistent with the other indicators of increased frequency of treatment.
• Combination therapy for mental disorders was used with increasing frequency from 2001 to 2010, but was documented in only about one-quarter of the total mental disorder diagnoses by 2010.

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