The Supplemental Security Income Program (SSI) provides financial support to low-income households with children and youth with severe disabilities. The program included children when it began in the early 1970s. The numbers of children receiving SSI benefits increased substantially in the early 1990s, in part through an expansion of the listings of mental health conditions with which children could become eligible. Over the past 20 years, larger numbers of children have received SSI benefits for mental disorders, and these increases have led to questions from the press and Congress regarding these numbers. Do they indicate more of an increase in mental disorders among SSI children than in the general population? The National Academy of Medicine (NAM; formerly the Institute of Medicine) convened a study panel to examine what is known about mental disorders among the child SSI population and how that compares with evidence about mental disorders in children in general. The NAM report provides detailed information about how SSI works, about the changing numbers of children receiving SSI for mental disorders, and some comparisons with other evidence about rising rates of mental disorders in the general population and especially among children living in poverty. The report indicates that increasing numbers of children with mental disorders in SSI mirror similar increases in the population in general. This article summarizes key evidence from the NAM report and suggests the implications for pediatricians.
- ADHD —
- attention-deficit/hyperactivity disorder
- ASD —
- autism spectrum disorder
- CDC —
- Centers for Disease Control and Prevention
- FPL —
- federal poverty level
- ID —
- intellectual disability
- NAM —
- National Academy of Medicine
- NHIS —
- National Health Interview Survey
- SSI —
- Supplemental Security Income
- SSA —
- Social Security Administration
The Supplemental Security Income (SSI) program provides cash assistance to people with moderate to severe disabilities. An important and underrecognized federal program for low-income families of children with physical, mental, and developmental disabilities, SSI provides substantial financial support for households raising children with disabilities, up to about $6500 per year on a sliding scale based on income. Families of children with disability face higher costs with lower income. Public or private insurance does not cover many of the major costs associated with raising a child with a disability.1 Furthermore, having a child with a disability decreases workforce participation by parents.2 The SSI program helps address these additional family costs and needs, and the income received from SSI can lower poverty rates among children and families. In 2010, including SSI benefits raised family income of 46% of child SSI recipients above the federal poverty line (FPL), and 78% of child recipients were the sole SSI recipient in their households.3
Background of the SSI Program for Children
Congress passed the SSI program in 1972 and included children after some debate, after the defeat of President Nixon’s welfare reform proposal (ie, the Family Assistance Plan).4 In addition to the child having to meet disability severity requirements, households must also meet financial eligibility requirements. Although households can have incomes up to approximately twice the FPL, 74% of children receiving SSI in 2010 live in households with incomes <150% of the FPL.3
Rates of increase in numbers of children receiving SSI benefits were fairly slow for the first 15 to 20 years, rising to ∼350 000 by 1990.5 A few major policy changes affected the children’s SSI program at that time. First, the Social Security Administration (SSA) had determined children’s disability in ways that differed from those used for adults. Specifically, SSA used a series of “medical listings” (ie, specific medical conditions with metrics of condition severity as an early step in determining disability). For adults who did not meet these listings or level of severity, the determination process then included an assessment of “residual functioning” (ie, a determination of whether the individual with his or her limitations was likely to find employment in the local marketplace). Children, however, received no similar assessment of functioning. A US Supreme Court decision in 1990 (Sullivan v. Zebley6) addressed this discrepancy and ruled that the SSA must provide a similar assessment of child functioning. Second, in an unrelated move, the SSA revised and updated its medical listings for child mental disorders, adding several new diagnostic categories, including attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD).7 Finally, partly in response to another court order, the SSA conducted an extensive program from approximately 1989 to 1992 to reach out to eligible children and enroll them.
In response to these policy changes, the SSI program experienced substantial increases in numbers of child beneficiaries from 1989 to the mid-1990s, from ∼300 000 recipients to >1 million. This increase led to substantial backlash in both the press and the US Congress that resulted in changes in the authorizing legislation in 1996,8 revising the definition of childhood disability. Although allowing some forms of functional assessment, the new rules resulted in ∼100 000 children losing their SSI benefits over the next year.9 Since the 1996 changes, however, the children’s SSI program has had persistent increases in numbers, with the current program including ∼1.3 million recipients, ∼1.8% of the US child population (Fig 1).
Because more than two-thirds of the increase in recipients since 1996 was among children with disabilities caused by mental disorders, new questions were raised again in the press and with the US Congress, specifically about whether too many children with mental disorders might be entering the SSI program.10,11 In 2014, the SSA asked the National Academy of Medicine (NAM; formerly the Institute of Medicine) to convene a committee to review the patterns of increase in the SSI program for children with mental disabilities. The committee selected 10 mental disorders for analysis.
The NAM study and report examined the increase in child SSI recipients who qualified as a result of mental disorders and the possible reasons for that increase. It compared the growing numbers of children who qualified on the basis of mental disorders with epidemiologic data from national surveys covering the same time period. The present article summarizes the evidence from that study, describes trends in mental health problems among children, and offers implications for the pediatric community. For context, we then report increased numbers in 3 target conditions (ADHD, ASD, and intellectual disability [ID]) to demonstrate similarities with national trends for specific disorders.
NAM Study and Methods
This article draws heavily on the work of the NAM Committee to Evaluate the Supplemental Security Income (SSI) Disability Programs for Children with Mental Disorders and staff whose report was published in September 2015.12 In the present article, we mainly review data provided by the SSA (much of it in the public domain) indicating diagnoses over the decade 2004–2013 of the following: (1) total enrollees; (2) new applications each year; and (3) allowances and denials for each year, for all children aged <18 years and for children with any of 10 selected mental disorders (ADHD, oppositional defiant disorder, conduct disorder, ASD, ID [previously categorized as mental retardation], borderline intellectual function, mood disorders, learning disabilities, organic mental disorders, and anxiety-related disorders). These 10 disorders are the highest frequency mental health diagnoses associated with SSI allowances. For an applicant child, a denial indicates that the child’s condition did not meet SSI requirements; an allowance indicates that the child met the requirements.
Although speech and language disorders are also frequent among diagnoses listed for child SSI recipients, the SSA chose to have a separate NAM committee review that group of disorders. Data for SSA tables came from unpublished data supplied by the SSA (with the exception of Fig 1, which reflects annual reports from the SSA) and analyzed by the NAM committee. We also present published information from the National Health Interview Survey (NHIS) and the Centers for Disease Control and Prevention (CDC) to compare and contrast increasing numbers of children with specific mental disorders in the SSI program with those in survey data.
Child SSI Disability Determination and Diagnostic Process
It is important to recognize that the SSA uses strategies for determining diagnoses that differ from the methods of most national surveys of health and wellness. After parents apply on behalf of their child, usually providing a tentative diagnosis, SSA develops a case portfolio, based on medical and other records, both to confirm (or change) a diagnosis and to determine whether the condition is severe enough to meet SSA definitions of disability.13 The child must have a medically determinable impairment, either mental or physical, that results from “anatomical, physiological, or psychological abnormalities which can be shown by medically acceptable clinical and laboratory diagnostic techniques.”14 If the child’s condition “meets or equals the listing,” they are awarded.15 If not, there is an additional process of determining if their impairment functionally equals the listings. There are 6 areas of functioning that the SSA uses in this step: (1) acquiring and using information; (2) attending and completing tasks; (3) interacting and relating with others; (4) moving about and manipulating objects; (5) caring for yourself; and (6) health and physical well-being. Eligibility based on functional limitations requires that the child have marked limitations in 2 of the 6 domains or extreme limitations in 1 domain.16 State Disability Determination Services conduct these evaluations, using national standards, with oversight by the SSA. Adjudicators developing these portfolios do not actually meet with or examine the applicant child. In cases in which enough information cannot be obtained, the SSA may commission an evaluation from a clinical expert to gather more data.
Figure 2 details this complex, labor-intensive process.12 Especially in the case of children with multiple conditions, it may be easier to make the determination on the basis of 1 disorder than another. Therefore, in this process, the adjudicator may change the listed diagnosis if another exists, when it is easier to determine eligibility for benefits based on the second diagnosis. In this case, the SSA files list the second diagnosis. Thus, for example, an adolescent with the SSA-listed diagnosis of depression may also have substantial disability from other conditions that SSA does not report. For many conditions, especially ones with a wide range of severity such as ADHD, children may have multiple comorbidities but that information will not necessarily appear in the SSA data files, which are coded based mainly on the qualifying condition.
For comparisons of increases in ADHD rates with the general child population, we used the NHIS, which identifies child and adolescent diagnoses entirely from parent reports that a physician or other health provider had given the child a diagnosis.17 The NHIS provides no confirmatory evidence of diagnosis, although several studies have indicated similar rates of conditions when obtained by parent report or more in-depth diagnostic methods.18 We also compared rates of ASD and ID with those reported by the CDC from the Metropolitan Atlanta Developmental Disabilities Surveillance Program.19 This surveillance system includes several data sources beyond parent report to identify these conditions.
Table 1 provides information on the increase in total child SSI recipients and those who received benefits for the 10 major mental disorders over the years 2004 to 2013.20,21 Child recipients grew from ∼1 million in 2004 to 1.3 million in 2013, a 33% increase. Consequently, the percentage of US child beneficiaries grew from 1.35% of the population to 1.80%. During the same period, the total number of children receiving SSI benefits for mental disorders grew from ∼540 000 to ∼654 000, an increase of 21% (Table 2). Thus, rates of children who received SSI for disabilities due to mental disorders grew less than rates of total childhood SSI, with the percentage of children with mental disorders dropping from 54% to 46% of children qualifying for SSI benefits.
Rates of determination (ie, children applying for SSI who are either approved or denied SSI benefits) for the top 10 major mental disorders remained generally stable over the study decade, with a slight increase in 2010–2012, dropping back in 2013. Over this time, new allowances for mental disorders (children who apply and actually receive benefits) also remained stable, at ∼90 000 per year (Table 2).
Nevertheless, this pattern has resulted in a substantial increase in the total number of SSI beneficiaries among children with mental disorders, because many children remain on the SSI rolls for long periods of time. Termination of benefits happens much less frequently than new allowances, in part because SSI has limited resources for reviews of disability status and prioritizes reviews of groups most at risk for changing status: infants at age 1 year and adolescents at age 18 years.22 Thus, the total number of recipients of SSI for mental disorders rose consistently over the decade (Table 2).
Allowance rates (the percentage of children who applied and were awarded) differ for the various mental disorders associated with disability. For example, nearly all applicant children with ASD or ID will have disabilities severe enough to qualify them for SSI, which is not the case for ADHD or borderline intellectual functioning. ADHD has lower allowance rates than many other conditions, but the high numbers of children applying with a label of ADHD account for their notable presence on SSI.
Condition-specific Example: ADHD
Table 3 provides specific information on changes in ADHD allowances and recipients over the study decade.23 Although allowances decreased in numbers (from ∼29 000 in 2004 to 24 000 in 2013), numbers of recipients who received SSI benefits with a diagnosis of ADHD increased from ∼139 000 to ∼226 000, an increase of 63%. During this same period, rates of ADHD reported in the NHIS grew by 5% in the childhood population above the FPL but by 55% among children in households with incomes below the FPL (Table 4).24
Condition-specific Examples: ASD and ID
Figure 3 shows changes in rates of child recipiency for ASD and ID over the study decade, with substantial increases in ASD mirrored by major decreases in ID. These findings are similar to the CDC Metropolitan Atlanta Developmental Disabilities Surveillance Program reports during the same period (Fig 4).19
This study from the NAM examined increases in the SSI child population, with a focus on children receiving benefits for mental disorders. Although numbers of children receiving SSI for mental disorders increased during the study period (2004–2013), they seem consistent with rates of increase of mental disorders in the general child population, especially those in low-income households. Poverty is a major risk factor for poor health status in childhood.25 Children who live in poverty have higher rates of chronic health conditions and disabilities.26⇓–28 The relative peaks in determinations and allowances in 2009–2011 may reflect the higher rates of household poverty with the Great Recession. During this time, nonetheless, rates of new applicants and allowances did not substantially increase, indicating that the number of children receiving benefits continued to grow in large part because the rates of new recipients were not offset by equal rates of termination of benefits through review or aging out at 18 years of age.
When we examined specific, high-volume conditions (ADHD, ASD, and ID), we found that changes in SSI rates mirrored rate changes in other child surveys. Although numbers of child SSI recipients with ADHD increased, those rates reflected reports of rise in ADHD diagnoses among poor children in the United States. Similarly, changes in ASD and ID rates were similar to changes found in the CDC’s community studies of the prevalence of these conditions. ID has always been categorized by SSA as a mental disorder. Reported increases in ASD diagnoses in the general population may reflect, in part, children who would have previously had a diagnosis of ID. The same changes may have affected the relative changes in ASD and ID diagnoses among SSI beneficiaries.
A major caveat for these comparisons, as noted earlier, is that SSA data may not provide accurate indicators of a child’s diagnosis. The SSA examines disability, whatever the cause, whereas the CDC and NHIS work to determine diagnosis, and the presence of a condition does not equate to disability.29 Furthermore, national surveys have no universally used definition of disability. The SSA requirements for disability are much more strict than typical definitions, requiring the impairments to be severe enough to cause more than a moderate limitation in age-appropriate functioning in at least 2 functional domains, whereas surveys do not require a severity claim when identifying disability. The NAM report strongly recommends that the SSA develop more reliable and valid diagnostic and disability data to allow more accurate description of trends.12
Although questions have been raised about the substantial increases in children with mental disorders receiving SSI benefits, specifically questioning whether the increases experienced in SSI are higher than expected, this study documents that the elevations are consistent with rates of increase in mental disorders in other childhood populations. Given the different methods used by the SSA compared with those used in national surveys, the consistency reinforces the findings from other studies that detection of mental disorders, including neurodevelopmental disabilities, is on the rise among all US children.27 The rise of mental health diagnoses among receiving SSI benefits also mirrors both the rise in the presence of these conditions among children in general and children in poverty more specifically. Furthermore, these rates are also consistent with rising rates of disability due to mental disorders during the same period.
These data and review article provide important information for pediatricians. First, the increase of numbers of children with mental disorders receiving SSI benefits does not seem higher than expected or higher than in the general population. Second, although families of many children may apply (and in doing so, ask their pediatricians to share clinical information with the SSA), the large majority of those who apply are denied benefits, especially for conditions with varied severity. Third, the program provides needed financial benefits to many low-income households raising children with severe disability.
- Accepted April 4, 2016.
- Address correspondence to James M. Perrin, MD, MassGeneral Hospital for Children, 125 Nashua St, #860, Boston, MA 02114. E-mail:
FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
Based on a report from the National Academy of Medicine (Mental Disorders and Disabilities Among Low-Income Children) released on September 9, 2015, at: http://www.nap.edu/catalog/21780/mental-disorders-and-disabilities-among-low-income-children.
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- Copyright © 2016 by the American Academy of Pediatrics