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November 17, 2015

Children With Mental Disorders Who Receive Disability BenefitsA Report From the IOM

Author Affiliations
  • 1Department of Pediatrics, University of Cincinnati and Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio
  • 2Department of Epidemiology, Brown University School of Public Health, Providence, Rhode Island
  • 3Department of Pediatrics, Harvard Medical School and MassGeneral Hospital for Children, Boston, Massachusetts
JAMA. 2015;314(19):2019-2020. doi:10.1001/jama.2015.12445

Increasing numbers of children have been diagnosed with mental and behavioral disorders in the last several decades, led by those diagnosed with attention-deficit/hyperactivity disorder (ADHD) and, more recently, autism spectrum disorders (ASDs). Although children with these disorders can be as severely impaired as those with physical disabilities, the severity of disability in the US population has not been documented. Children growing up in poverty have a higher risk of developing mental disorders.

In the 1970s, the Social Security Administration (SSA) began paying benefits through the Supplemental Security Income (SSI) program to low-income families of children with severe physical or mental disabilities. Initially, the program preferentially focused on physical disabilities, but changing rules for determining mental health disability in the 1990s led to increasing numbers of children with mental disorder–related disabilities receiving benefits. By 2013, 1.3 million children (aged 0 through 17 years) received SSI benefits, and approximately half of the program beneficiaries had mental disorders.1

Given the increasing rates of mental and behavioral health diagnoses among children and adolescents in the United States over the past few decades,2 a key question is whether the increased prevalence of mental health diagnoses among disabled children receiving SSI benefits has been out of proportion with the increased prevalence of these diagnoses in the general population. This question, as well as concerns about the effectiveness and sustainability of the expanding SSI entitlement program, has been articulated by the media3 and at the congressional level.4 In response, the SSA commissioned the National Academies of Sciences, Engineering, and Medicine to assemble a consensus committee to review data from the childhood mental disorder–related SSI benefits program and compare prevalence trends in that program with those of childhood mental disorders in the US population.1

Methodologic Issues

Prevalence trends from national surveys and studies of services used for mental disorders in US children and youth were analyzed and compared with SSI data. However, major differences between the SSI and general populations of children with mental disorders made it difficult to reach firm conclusions. Unlike children in the general population, all children in the SSI population are determined to be severely disabled. Furthermore, nearly all children in the SSI program live in families with incomes at or under 200% of the Federal Poverty Level (FPL), representing 42% of the general population of children.5

Both mental disorder prevalence and severity are greater among low-income children than in the general population. In an effort to draw meaningful comparisons, the committee generated data on prevalence trends for mental disorders among children living in families at or below 200% of the FPL. The committee also examined prevalence trends in a second means-based comparison group, namely, children receiving services through the Medicaid program. Limitations of the committee’s analyses of trends among all populations included a paucity of data documenting disability severity, varying data sources, and inconsistent criteria used to establish diagnoses.

The major focus of the committee’s data analysis spanned the decade 2004-2013, the period during which data were provided by the SSA. The committee chose the most prevalent childhood mental health conditions for receipt of SSA benefits as its focus for data analysis: ADHD, ASD, intellectual disability, mood disorders, learning disorders, organic mental disorders, oppositional defiant and conduct disorders, anxiety-related disorders, and borderline intellectual function. They comprise 49.5% of all children with severe disabilities who receive SSI benefits.1

Key Findings

The committee’s main conclusion was that after accounting for poverty, the decade-long increase in the percentage of low-income children receiving SSI benefits for mental disorder–related impairments (from 1.88% to 2.09%) is consistent with and proportionate to trends for diagnosed mental health disorders among children in the general and low-income populations of US youth.1 Consistency with trends in Medicaid benefits for mental disorders was also found. Growth of the total beneficiary population was not attributable to increasing numbers of children newly allowed benefits, which actually declined over the study decade. Rather, increases in the total number of beneficiaries reflected an annual excess of allowances over terminations from the program, which are triggered mainly by evaluating changes in household income or child disability status.

Another major conclusion reached by the committee was a direct relationship between the numbers of children living in poverty and SSI benefits for mental disorder–related disability. Numbers of applications, allowances, and total beneficiaries increased with rising levels of family poverty during the 2008 recession and began to recede as the economy improved by 2011. The committee concluded that child poverty is a major factor affecting trends in SSI support for children with mental disorders. In that poverty is a risk factor for both prevalence and severity of childhood mental disorders, and recognizing that children with disability increase the risk for family poverty, effective programs that financially support underresourced families who have a child with severe impairment would seem to have a compelling rationale. The committee found that SSI benefits elevated family income from below to above the FPL for 46% of recipient families in 2010.

Another finding was a broad and sizeable state-to-state variation in annual SSI applications, allowances, and total beneficiaries. This variation cannot be explained solely by geographic differences in the prevalence of mental disorders and related disability. At least some states would appear to have a substantial pool of potentially eligible children who are not accessing or awarded SSI benefits. The committee also estimated the numbers of all US children with moderate to severe disability owing to specific mental disorders, which considerably exceeds the number of total recipients of SSI benefits for most of the disorders. For example, less than 10% of poor children with moderate to severe mood disorders were recipients of SSI benefits in 2012. It appears that many potentially eligible children are not accessing this benefits program. Clinicians and other health care providers can assist with access by informing families of the SSI option and facilitating submission of applications.

A particular focus of the committee was childhood ADHD, which has been singled out by the media3 and Congress4 as a large, growing, and potentially problematic SSI recipient population. The committee found that across the 2004-2013 decade, the SSI population with ADHD increased by more than 60% and annually was the largest recipient group, representing 226 363 children in 2013. However, less than 25% of children applying with a diagnosis of ADHD at the end of the study decade received benefits, one of the lower administrative approval rates for all mental disorders. In comparison, 83% of children with autism received benefits. During the time frame of the analysis, the most rapidly increasing recipient group was children with ASD, but both ADHD and ASD are being diagnosed within the medical and school systems with increasing frequency. The expansion of the SSI benefits program attributable to these conditions is consistent with trends in identification and labeling of these disorders.

The committee also noted several potential considerations for improvement of the SSI disability benefits program for children with mental disorders. The agency will benefit from more extensive and systematic collection of data concerning diagnoses, comorbidities, severity of impairment, and treatment outcomes. Furthermore, pediatricians and other child health professionals recognize the dynamic nature of disability among children and youth6 and would support a standardized and consistent approach to assessment of continuing disability among children in the SSI program that could be cost-effective.7 Such standard approaches could help counter trends in which limited numbers of benefit terminations have not kept pace with new beneficiaries, resulting in a steady increase in the number of SSI recipients with mental disorders. Other considerations might include methodologic improvements in assessment of the effects of SSI benefits for family functioning and child outcomes and closer scrutiny of state-to-state variation and its impact on this federally funded program.

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Article Information

Corresponding Author: Thomas F. Boat, MD, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH 45229 (thomas.boat@cchmc.org).

Published Online: September 11, 2015. doi:10.1001/jama.2015.12445.

Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported.

Funding/Support: This National Academies consensus study was sponsored by the Social Security Administration.

Additional Contributions: Members of the National Academies Committee that wrote the report entitled Mental Disorders and Disabilities Among Low-Income Children were Thomas Boat (Chair), Carl Bell, Stephen Buka, Jane Costello, Maureen Durkin, Glenace Edwall, Kimberly Hoagwood, Amy Hautrow, Peter Jensen, Kelly Kelleher, James Perrin, Fred Volkmar, Barbara Wolfe, and Bonnie Zima. Joel Wu was the study director. Howard Goldman and Ruth Stein were consultants to the committee.

Additional Information: The report Mental Disorders and Disabilities Among Low-Income Children was released on September 9, 2015, and can be accessed online or a print copy ordered at http://www.nap.edu/catalog/21780/mental-disorders-and-disabilities-among-low-income-children. It contains heretofore unavailable epidemiologic data supporting the above points. Interested clinicians and investigators will have full access to these data as well as an extensive list of additional committee findings and conclusions.

References
1.
National Academies of Sciences, Engineering, and Medicine. Mental Disorders and Disabilities among Low-Income Children. Washington, DC: National Academies Press; September 9, 2015. http://www.nap.edu/catalog/21780/mental-disorders-and-disabilities-among-low-income-children.
2.
Houtrow  AJ, Larson  K, Olson  LM, Newacheck  PW, Halfon  N.  Changing trends of childhood disability, 2001-2011. Pediatrics. 2014;134(3):530-538.
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Wen P. The other welfare: a legacy of unintended side effects. Boston Globe. http://www.boston.com/news/local/massachusetts/articles/2010/12/12/with_ssi_program_a_legacy_of_unintended_side_effects/. December 12, 2010. Accessed September 10, 2015.
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Government Accountability Office. Supplemental Security Income: better management oversight needed for children’s benefits. GAO-12-497. http://purl.fdlp.gov/GPO/gpo25551. June 2012. Accessed July 7, 2015.
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Child Trends Databank. http://www.childtrends.org/databank/indicators-by-topic-area/poverty/. Accessed September 9, 2015.
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Van Cleave  J, Gortmaker  SL, Perrin  JM.  Dynamics of obesity and chronic health conditions among children and youth. JAMA. 2010;303(7):623-630.
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Pulcini  CD, Kotelchuck  M, Kuhlthau  KA, Nozzolillo  AA, Perrin  JM.  Potential savings from redetermining disability among children receiving supplemental security income benefits. Acad Pediatr. 2012;12(6):489-494.
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