Since 1974, the SSI program, under Title XVI of the Social Security Act, as amended, has provided benefits to low-income blind and disabled persons—including adults and children,individuals—who meet financial eligibility requirements and the definition of disability. For individuals under age 18, a disability is a medically determinable physical or mental impairment that results in marked and severe functional limitations, and is expected to result in death or which as well as certain aged has lasted or can be expected to last for a continuous period of at least 12 months. Families of children receiving SSI payments are generally required to use the benefit to meet a child’s needs, including food, clothing, and shelter. The maximum federal benefit payment for a child receiving SSI benefits in 2012 is $698 per month, regardless of the severity of the child’s impairment.monthly federal child payment was $592. The medical evaluation is conducted under applicable legal requirements and SSA policy. severe impairment that does not meet or medically equal any listing, the DDS will then determine whether the impairment results in limitations that functionally equal the listings. To aid in evaluating whether a child is medically eligible, DDS offices review various medical and nonmedical information about the child, such as physician notes, psychological tests, school records, and teacher assessments. In certain situations, such as when the evidence is not sufficient to support a decision as to whether a child is disabled, the DDS may purchase a consultative examination to assist in making the decision. If there is evidence that indicates the existence of a mental impairment, the DDS is supposed to make every reasonable effort to ensure that a qualified psychiatrist or psychologist has completed the medical portion of the case review. After the initial determination has been made and before returning the case file to complete any outstanding nondisability case development, SSA selects a sample of initial determinations for a quality assurance review. If the case is sampled, the reviewing component sends the case to the servicing field office upon completion of its review. If the claimant is determined to be disabled, the field office computes the benefit amount and initiates benefit payment. If the claim is denied, a claimant has 60 days to request that the DDS reconsider its decision. If the claimant is dissatisfied with the reconsideration, he or she may request a hearing before an administrative law judge, whose decision may then be reviewed by SSA’s Appeals Council. When these administrative review options have been exhausted, the claimant may request judicial review by filing an action in a federal district court. If SSA determines that an individual is disabled, the agency is required by law to conduct periodic reviews, known as continuing disability reviews (CDR), to verify the recipient’s continued medical eligibility for receiving benefits in certain circumstances. More specifically, SSA is generally required to perform CDRs (1) during the first year after birth for babies whose low birth weight is a contributing factor to the determination of disability and (2) at least once every 3 years for all other children under age 18 whose conditions are considered likely to improve. DDS offices determine when recipients will be due for CDRs on the basis of their potential for medical improvement, and select and schedule a review date—otherwise known as a “diary date”—for each recipient’s CDR. At the time of these reviews, the child’s representative payee generally must present evidence that the child is and has been receiving medically necessary and available treatment for his or her impairment. SSA is also generally required to redetermine the eligibility of children against the adult criteria for disability after they reach age 18. Since SSI’s inception, a number of policy changes have influenced how SSA makes disability decisions and the extent children with mental impairments are eligible to participate in the program. In 1984, Congress mandated the development of new disability standards for individuals with mental impairments and the consideration of the impact of multiple impairments in determining disability, among other things. SSA subsequently expanded the list of mental impairments it considers disabling in 1985 and again in 1990, when SSA added impairments such as ADHD. In 1990, the U.S. Supreme Court decided in Sullivan v. Zebley that SSA’s use of medical listings of impairments for children— without conducting a functional analysis—was incomplete. In response, SSA established “functional equivalence” as a basis for SSI eligibility for children, whereby a child can be found medically eligible for benefits if the child’s impairment limits his or her functional ability to the same degree as described in a listed impairment. In deciding whether an impairment functionally equals the listings, SSA examines how the child functions compared to children of the same age who do not have impairments— rather than basing the decision on the child’s medical diagnosis. The Court’s decision also resulted in the introduction of the individualized functional assessment. This assessment was intended to be comparable to SSA’s method for evaluating adult impairments and to broaden the evaluation of disability in children with physical and mental impairments to include the effects of impairments on a child’s ability to perform age- appropriate activities on a day-to-day basis. Awards to children, especially those with mental impairments, increased dramatically for several years following the Sullivan v. Zebley decision due partly to SSA readjudicating nearly 300,000 determinations made between January 1980 and February 1991 under the revised disability criteria. By 1994, SSA had reprocessed the majority of these cases, and subsequently returned to processing their normal case loads. The Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (PRWORA) changed the standard for children, and the act was expected to reduce the number of awards. However, awards to children with mental impairments began to increase again shortly after the legislation was enacted (see fig. 1). The number of children applying for and receiving SSI benefits due to a mental impairment has increased for more than a decade, and these children comprise a growing majority of all child recipients on the SSI disability rolls. While not all such children who are deemed medically eligible ultimately meet SSI’s financial eligibility requirements, the numbers of children applying for SSI benefits due to a mental impairment increased from 187,052 in fiscal year 2000 to 315,832 in fiscal year 2011 (a 69 percent increase). Despite this increase, SSA data indicated that the agency has denied a majority of these child applicants each year. In fact, for initial determinations in fiscal years 2000 to 2011, the average denial rates for children with physical and mental impairments were about 63 and 54 percent, respectively, and allowance rates have remained relatively stable over time for both groups of children. SSA data also showed that since fiscal year 2000, children with mental impairments represented the majority of all child applications and allowances for SSI benefits (see fig. 2). SSA data show that, for those children with mental impairments who apply, the number of children found medically eligible for benefits has increased for almost every mental impairment category—such as speech and language delay and mood disorder—for fiscal years 2000 to 2010, with the exception of intellectual disability. SSA data also show that the three most prevalent primary mental impairments among those children found medically eligible in fiscal year 2011 were for (1) ADHD, (2) speech and language delay, and (3) autism.indicate that applications and allowances for autism saw the largest percentage increases from fiscal years 2000 to 2011 (see fig. 3). (See app. III for trend information related to these three impairments.) DDS examiners rely on a combination of key medical and nonmedical information sources—such as medical records, effects of prescribed medications, school records, and teacher and parent assessments—in determining a child’s medical eligibility for benefits. Several DDS officials we interviewed said that when making a determination, they consider the totality of information related to the child’s impairments, rather than one piece of information in isolation. Based on our case file review, we estimate that examiners generally cited four to five information sources as support for their decisions in fiscal year 2010 for the three most prevalent mental impairments. While examiners relied on multiple information sources, we found that the extent they used these sources varied (see fig. 5). In more than 90 percent of the cases we reviewed, the examiner used some form of medical evidence to support the decision, regardless of whether the child’s impairment met, medically equaled, or functionally equaled the listings. SSA generally requires DDS examiners to assist children and their parents or guardians in obtaining medical records in an effort to develop at least a 1-year-long medical history prior to applying for benefits. We estimate that examiners used observations from a treating source, such as a pediatrician or psychologist, about a child’s functioning and testing by a treating source as support for 65 percent and 61 percent of their determinations, respectively, making them among the most commonly cited information sources. According to many of the DDS officials we interviewed, examiners attempt to obtain medical evidence, such as psychological tests, physician’s notes, and mental health records, for children with alleged mental impairments. If such evidence is not available or is inconclusive, DDS examiners may purchase a consultative exam to provide additional medical evidence and help them establish the severity of a child’s impairment. This examination is intended to provide the additional medical evidence, such as results of a physical examination and laboratory findings, needed for a determination. Based on our case file review, we estimate at least one consultative examination was present in 52 percent of the cases. In some cases, DDS offices requested multiple consultative examinations, such as both a psychological and speech and language evaluation to address different aspects of the alleged impairment. Consultative examinations also provide information on the severity of the child’s impairment. For example, one examination provider described a case in which a child with a speech and language delay had receptive and expressive language skills that were nearly 2 years behind his chronological age. We estimated that cases were more likely to be allowed if the consultative exam provider described the child’s impairment as severe. However, many DDS officials told us that such examinations are only a “snap-shot” in time and do not provide a longitudinal view of the child’s functioning. For this reason, some DDS officials said that information from a treating source with a long-standing relationship with the child, such as a physician, is more useful. In addition to medical evidence, SSA uses nonmedical information to evaluate the severity of the child’s impairment and functioning as part of These sources include parents, day care the eligibility determination. providers, teachers, and others knowledgeable about the child’s day-to- day behavior and activities. SSA field office staff may also provide observations about the child, if the child is present for the disability interview. (We estimate about 8 percent of child applicants were present at the field office for the disability interview.) Several DDS officials told us school records and teacher assessments (standardized questionnaires) are especially critical for determining medical eligibility because these assessments provide information on a child’s functioning over time and are generally more objective than parent assessments. According to some DDS examiners, parents primarily observe their child in an unstructured home environment after the child’s medications have worn off, and may not know what behaviors are developmentally normal, whereas teachers are generally in a position to compare the child to other children and provide neutral observations on how the child relates to peers, responds to medication, and performs in school. We estimate teacher assessments and school testing were used to support 63 and 43 percent of determinations, respectively. We also identified several examples in the case files we reviewed where the teacher’s assessment was used to establish the child’s level of functioning and response to medication. For example: To support an allowance in one autism case, the examiner noted “Per teacher, he is virtually nonverbal. The teacher confirms he is not toilet trained or independent in any area of self care.” To support a denial decision in one ADHD case, the examiner noted that the teacher’s assessment indicated that the child’s medication “has ‘helped tremendously’ with ability to concentrate.” Additionally, according to the teacher the child “has many friends and is very social. She has no problems interacting with others. Claimant has no problems with self care. She participates in the softball and dance team.” To support a denial decision in one autism case, the examiner reported that the “teacher…notes he is more controlled on his meds.” After the necessary information is collected to make a disability determination, several examiners said that they compare all the information to identify inconsistencies and assign weight to the various sources. For example, some officials told us examiners assess the credibility of parents’ assessments of children’s functioning by comparing it to physicians’ and teachers’ statements. SSA policy notes that an inconsistency does not necessarily mean that a determination cannot be made because often most of the evidence or the most substantial evidence outweighs the inconsistent evidence and additional information would not change the determination or decision. Among the 298 alleged ADHD, speech and language delay, and autism cases we examined, there were 25 in which material inconsistencies could not be resolved between sources, requiring the examiner to assign more or less weight to certain sources. Examiners assigned more weight to teacher assessments or information from school testing in 11 of the 25 cases. Examiners also generally assigned more weight to testing and observations of functioning by a consultative examiner (10 of the 25 cases) or by a treating source (10 of the 25 cases). In contrast, parents’ assessments were given less weight in 14 of the 25 cases, although decisions were made on a case by case basis. In one ADHD case, the child’s mother alleged a developmental delay, but a psychological consultative exam did not find evidence of such a delay. The child’s teacher also stated that the child performed well academically when not under timed conditions. In this case, the examiner gave less weight to the parent’s assessment and denied the claim. Despite a media report that prescription medication is considered by some parents as key to obtaining SSI benefits, we found that medication and treatment information is frequently a basis for denying benefits. SSA and DDS officials told us that medication is generally given no more weight than any other medical or nonmedical information in determining a child’s medical eligibility. In addition, several DDS officials told us medication is considered in the context of other sources of information as “just one piece of the puzzle.” Our case file review confirmed that information on medication and treatment was never the sole source of support for an allowance or denial. In fact, we found that applicants were more likely to be denied than allowed when medication was reported (see fig. 6). When applying for benefits, parents reported that their children were prescribed some form of medication in 58 percent of the cases we reviewed. Of cases where medication was reported as present, 65 percent were denied and 35 percent were allowed. By comparison, 47 percent of cases were denied and 53 percent were allowed when medication was not reported as present. We found that in cases in which psychotropic drug use was reported, applicants were also more likely to be denied. In these cases, 68 percent were denied and 32 percent were allowed. Nevertheless, our case file review suggests examiners did not decide whether to allow or deny a claim based on the absence or presence of medication. Although medication was reported as present in 58 percent of cases, it was only cited as support for a determination in 38 percent of cases. Beyond examining cases where parents reported that their children were prescribed medication, we also specifically looked at cases where examiners cited information on medication or treatment as part of the rationale for their determinations. We found examiners generally considered how the child responded to these interventions when making a determination, and in 66 percent of the cases where information on medication or treatment was used to support a determination, the applicant was denied. When examiners cited medication and treatment as a basis for denials, they noted that the child’s functioning improved due to these interventions. For example, in one denied ADHD case, the examiner wrote that the claimant “has responded well to medication and while on medication has no problems functioning, completing work on time and getting along with others.” In one denied speech and language delay case, the examiner noted that the claimant “has been through multiple therapies” and that “hese therapies have been successful.” To the extent that medication improves functioning, DDS officials told us they could potentially find that the child is not disabled under program rules. In contrast, in cases where the child’s functioning was not improved by medication, this information generally helped support an allowance. For example, in one allowed ADHD case, the examiner noted that the child was “ot able to complete work independently despite tx with psych meds and special supervision in a partial inclusion setting.” In another allowed ADHD case, the examiner observed that both the treating source and teacher’s assessment “indicate marked limitations in attention and concentration even with stimulant meds.” Despite the examiners’ focus on how medication affects functioning, certain field office and DDS officials acknowledged that they believe some parents are under the impression that medicating their children will improve their likelihood of being found eligible for benefits. For example, in one denied ADHD case the child’s mother did not cooperate with the DDS’s efforts to obtain a consultative exam. The mother argued the DDS should already have enough evidence to support an allowance because the child was taking medication. However, other DDS officials told us some parents may avoid medicating their child prior to a consultative examination so that the child misbehaves and appears more disabled—further reinforcing the importance of multiple tests and observations for determining eligibility. Despite the importance of nonmedical information in determining a child’s medical eligibility, examiners sometimes face challenges obtaining complete information. Several DDS offices reported difficulty obtaining school records or teacher assessments, which they partly attributed to school and teacher concerns about the time involved to compile this information, potential liability issues, or confusion about how such information is used in the disability decision-making process. For example, some DDS examiners told us that in certain instances teachers view their completion of the assessment as affirming that a child is disabled and thus endorsing SSA’s decision to award benefits. They do not understand that examiners base their determinations on the totality of evidence or that the assessment could be used to support a denial. In one of the cases we reviewed, a teacher returned a blank teacher assessment with a note stating “we are not allowed to fill these out anymore.” Our case file review estimated that teacher assessments were absent for 57 percent of cases for children age 7 or younger—which is unsurprising, given that many of these children may not yet be school age—but such assessments were also absent for 25 percent of cases for children older than age 7. To address this challenge, SSA officials told us that some DDS offices have dedicated staff to conduct outreach to schools in order to emphasize the importance of information from schools as an evidence source. However, they added that these staff have competing priorities, including recruiting consultative exam providers and other medical professionals, which limit the amount of outreach they can perform. In addition to strengthening relationships with school personnel, disability advocates told us that SSA could revise the teacher assessment by using clearer language to make it more inviting to teachers. They also noted that SSA could further emphasize that by completing the assessment, teachers are not endorsing SSA’s ultimate decision as to whether the child is disabled or qualifies for benefits. Because schools and teachers are not required to provide records or teacher assessments, some DDS offices pay a fee for school records, but state laws prevent others from doing so, according to SSA officials. SSA officials did not know the extent to which DDS offices have paid for school records or the amount they had paid. SSA officials informed us they have heard reports of some DDS offices facing challenges in obtaining information from schools, but they do not know the degree to which these challenges exist nationwide, nor has SSA conducted an empirical analysis of challenges related to obtaining information from schools. SSA did issue guidance on steps DDS offices can take to mitigate processing delays associated with obtaining school evidence during extended school breaks, such as summer vacation, but the agency has not issued guidance regarding year-round challenges associated with obtaining information from schools. Without further study to determine how widespread these obstacles are, it will remain unclear whether additional guidance is warranted. In addition to the challenges they sometimes face in obtaining information from schools, DDS examiners said that they do not routinely receive information from SSA field offices on multiple siblings receiving SSI benefits within the same household even though they are directed to be alert for such cases. SSA’s policy operations manual states that disabilities may occur in more than one member of a family or household, but notes prior case experience has shown this type of situation is an indicator of possible fraud or abuse, particularly where certain mental impairments are involved. For example, one of SSA’s Cooperative Disability Investigations Units investigated a case in which parents applied for SSI benefits on behalf of their four children, alleging that they all suffered from ADHD and conduct issues.found that the school guidance counselor had never observed them exhibiting symptoms of ADHD despite seeing the four children daily, and that a doctor had rescinded an order authorizing the school to administer ADHD medication to the children. In this instance, SSA subsequently denied the siblings’ applications for SSI benefits. SSA’s policy operations manual directs examiners to refer such cases to SSA’s Cooperative Disability Investigations Unit or Office of the Inspector General for further However, investigators development, if questionable issues cannot be resolved. Based on our interviews, it appears that SSA field offices do not consistently notify DDS examiners when an applicant’s siblings are already receiving SSI benefits, nor are they always made aware of concurrent sibling applications. SSA data indicate that as of January 2012, nearly 64,000 children, or 5 percent of all child recipients, resided in a household where more than 1 child received disability benefits. Without information on such children, DDS examiners may be limited in their ability to identify potential fraud or abuse in the program and elevate these cases to the attention of SSA’s fraud investigations unit. SSA has conducted significantly fewer CDRs for children receiving SSI benefits since 2000, even though SSA is generally required to perform CDRs at least every 3 years on child recipients under age 18 whose impairments are likely to improve, as well as certain other individuals (see fig 7). Childhood CDRs overall fell from more than 150,000 in fiscal year 2000 to about 45,000 reviews in fiscal year 2011 (a 70 percent decrease). More specifically, CDRs for children under age 18 with mental impairments declined from more than 84,000 to about 16,000 (an 80 percent decrease). Similarly, SSA has conducted significantly fewer CDRs for adult benefit recipients of either SSI or Social Security Disability Insurance (SSDI). From fiscal years 2000 to 2011, the number of adult CDRs fell from 584,000 to 179,000.proportion of childhood CDRs conducted has remained much lower than the proportion of adult CDRs conducted. SSA officials attribute the decrease in CDRs overall, including childhood CDRs for those with mental impairments, primarily to resource limitations and a greater emphasis on processing initial claims and reducing the backlog of requests for appeals hearings in recent years. While SSA did increase the number of CDRs it performed after receiving additional funding specifically targeted for CDRs from fiscal years 1996 to 2002, CDRs decreased once the funding expired. SSA, Strategic Plan: Security Value for America, Fiscal Years 2013-2016 (Feb. 2012). because DDS offices have not consistently collected secondary impairment data. Without steps to ensure that this information is more reliably recorded, SSA management will not have a complete picture of the characteristics of children with mental impairments receiving benefits or changes in this population over time. Because examiners sometimes lack key information for cases they review, including school records and information on multiple children receiving benefits in the same household, they may face challenges in making eligibility decisions and identifying potential fraud or abuse. Examiners have also increasingly based allowance decisions on a finding of functional equivalence for children with the most prevalent mental impairments, requiring more complex decision making. Yet because some examiners face obstacles in obtaining information from schools— which they consider critical to understanding how a child functions—SSA cannot ensure that examiners have the necessary information to arrive at the most accurate determinations. Additionally, as a key program gatekeeper, DDS examiners are in a unique position to identify program integrity threats related to multiple children receiving SSI benefits within the same household. However, without better information on these types of arrangements they are unable fulfill this role in preventing potential fraud and abuse. The fact that more than 430,000 childhood CDRs are overdue raises concerns about the agency’s ability to manage limited funds in a manner that adequately balances its public service priorities with its stewardship responsibility. When reviews are not conducted as scheduled, some child recipients may receive benefits for which they are no longer eligible, potentially costing taxpayers billions of dollars in overpayments. Furthermore, CDRs provide an important check on program growth by removing ineligible recipients from the rolls, even while new applicants are added. If these reviews are not conducted in sufficient numbers, the agency will continue to struggle to contain growth in benefit payments, placing added burden on already strained federal budgets. Congress appropriated funding for SSA to conduct more CDRs in recent years, and SSA is evaluating how to manage its overall CDR workload. However, because SSA considers SSI childhood CDRs a lower priority than other CDRs, it is unclear whether the agency will use this funding to review children most likely to medically improve—reviews that could yield a high return on investment. If SSA continues to rely heavily on the use of waivers to conduct fewer CDRs than would otherwise be required by law, SSA will potentially forgo future program savings. Furthermore, while we consider SSA’s decision to begin issuing formal waivers in order to clearly comply with the CDR legal requirement to be a good start, that action alone is not sufficient to fully alleviate our concerns with the waiver process. Until the agency formally implements this waiver process, the extent to which SSA is conducting CDRs consistently with its legal requirements will continue to be unclear. To strengthen eligibility decisions and improve monitoring of children with mental impairments within the SSI program, we recommend that the Commissioner of Social Security: 1. Direct the Deputy Commissioners of Retirement and Disability Policy and Operations to take steps to ensure that DDS examiners accurately record information on secondary impairments in order to improve SSA’s understanding of how multiple impairments may influence decisions. 2. Direct the Deputy Commissioner of Operations to identify the extent to which DDS examiners nationwide experience obstacles in obtaining teacher assessments and school records. To the extent these are identified, SSA should clarify the nature of these obstacles and formulate steps to address them. Such steps could include increased DDS outreach to primary and secondary schools, increased SSA coordination with the Department of Education, or additional guidance to DDS offices. 3. Direct the Deputy Commissioner of Operations to ensure that field offices notify their respective DDS offices of those claims in which multiple children within the same household are applying for or receiving SSI benefits so that examiners will be better able to identify potential fraud or abuse in the program and elevate these cases to the attention of SSA’s fraud investigations unit. 4. Direct the Deputy Commissioner of Quality Performance to eliminate the existing CDR backlog of cases for children with impairments who are likely to improve and, on an ongoing basis, conduct CDRs at least every 3 years for all children with impairments who are likely to improve, as resources are made available for these purposes. 5. Direct the Deputy Commissioner of Quality Performance and Deputy Commissioner of Operations to take actions to ensure that SSA’s CDR waiver process is open, transparent, and public. This may include promulgating formal guidance for issuing waivers, and a process for making information about issued waivers available to the public. We provided a draft of this report to SSA for review and comment. In its written comments, reproduced in appendix V, SSA agreed with 4 of our 5 recommendations and stated that our draft report overall reflected a good understanding of the disability determination process and the SSI childhood disability program. SSA disagreed with our recommendation to eliminate the existing CDR backlog of cases for children with impairments who are likely to improve and conduct CDRs for these children at least every 3 years, as resources are made available for these purposes. SSA agreed conceptually that it should complete more CDRs for SSI children but emphasized that it is constrained by limited funding and staff resources and as a result had to waive many required childhood CDRs in recent years. SSA also argued that performing additional SSI child CDRs would have negative impacts on the SSDI program. We acknowledge the challenge SSA faces as it strives to balance competing workloads. In recognition of the agency’s resource constraints, we noted in our recommendation that additional CDRs for children who are likely to medically improve should be conducted “as resources are made available for these purposes.” We also believe that the increased appropriations for CDRs in recent years provides SSA with added flexibility for balancing these competing workloads. Moreover, it is important to recognize we are not recommending that SSA eliminate its ongoing SSDI CDR efforts. Rather, we believe that more attention is needed for SSI children’s cases to address the existing backlog, especially given the relatively few CDRs conducted in this area in recent years, and the high average cessation rate for these cases. SSA also provided technical comments that we have incorporated, as appropriate. We are sending copies of this report to the Commissioner of Social Security, appropriate congressional committees, and other interested parties. In addition, the report is available at no charge on the GAO website at http://www.gao.gov. If you or your staff have any questions about this report, please contact me at (202) 512-7215 or bertonid@gao.gov. Contact points for our Offices of Congressional Relations and Public Affairs may be found on the last page of this report. GAO staff who made major contributions to this report are listed in appendix VI. Our review focused on (1) the trends in the rate of children receiving Supplemental Security Income (SSI) benefits due to mental impairments; (2) the role that medical and nonmedical information, such as medication and school records, play in the initial determination of a child’s medical eligibility; and (3) the steps the Social Security Administration (SSA) has taken to monitor the continued medical eligibility of these children. To examine these issues, we analyzed SSA data on (1) the overall number of initial disability determinations and allowances, (2) annual benefit awards and recipients, (3) the number and types of mental impairments, (4) the number of children receiving SSI benefits residing in households where other children also receive SSI benefits, and (5) the number of continuing disability reviews of children conducted by SSA. In reviewing these data, we acknowledge that the child population in the United States has also grown since 2000 and demographics of this population may have changed since that time. We assessed the reliability of the data presented in this report by performing data testing, reviewing internal controls and related documentation, and interviewing agency officials, and found potential limitations with the extent to which primary and secondary impairment coding within SSA’s 831 Disability file—the file that contains data on disability determinations—may be complete. However, because the 831 Disability file is used by SSA to make, and thus reflect, the decisions made regarding medical determinations, we determined that these data were sufficiently reliable to describe certain trends among children in the SSI program. We also conducted in-depth interviews with SSA management and line staff at SSA headquarters and within six SSA regions—Atlanta, Georgia; Dallas, Texas; Chicago, Illinois; Philadelphia, Pennsylvania; Boston, Massachusetts; and San Francisco, California. Our work included site visits to 9 field offices within these regions, as well as 11 state disability determination services (DDS) offices (state agencies under the direction of SSA that perform medical eligibility determinations and continuing disability reviews of SSI applicants). We performed separate interviews with SSA field office district managers, supervisors, and claims representatives, and with DDS managers, supervisors, examiners, and medical or psychological consultants, when they were available. We selected these sites on the basis of their geographic location, high volume of SSI applications for children with mental impairments, and variety of benefit allowance rates for children with mental impairments. In addition, we interviewed numerous external experts from the medical and disability advocacy communities and reviewed relevant studies to identify factors that may be currently affecting the growth and composition of the childhood disability applicants and recipients, especially for those children with mental impairments. However, the relative effects of any potential factors we identified on the SSI program’s growth are not fully known and were beyond the scope of this report. We also reviewed relevant federal laws and regulations. We conducted a case file review to verify information obtained through our interviews with DDS office staff and to better understand the role of secondary impairments in determinations as well as what information examiners use when determining a child’s medical eligibility. We reviewed a probability sample of 298 case files selected from the 184,150 initial determinations decided in fiscal year 2010 for children with alleged attention deficit hyperactivity disorder (ADHD), speech and language delay, and autistic disorder and other pervasive development disorders (autism). (Through the initial determination process, the DDS assesses whether the child’s impairment can be established through medical evidence—not only by the individual’s statement of symptoms—as well as the severity of the impairment and whether the impairment results in marked and severe functional limitations.) We reviewed electronic case files for children with mental impairments and SSA forms to develop a standardized data collection instrument. We completed a data collection instrument for each initial determination in our sample, and each record was independently reviewed by another staff person for clarity and accuracy. We based our observations of the sources examiners used to support their determinations on examiners’ remarks in the Childhood Disability Evaluation Form (form SSA-538-F6) and the Disability Determination Explanation. Because our purpose was not to assess the appropriateness of examiners’ decisions but to understand what information sources examiners used in explaining the rationale for their decision-making, we did not attempt to adjudicate these cases ourselves. Our observations were limited by the extent to which examiners documented their analysis and rationale on these forms. We found the examiners’ remarks sufficient to characterize which sources were used to support decisions, but examiners provided varying levels of detail in their remarks and we had no basis for judging whether additional sources of information were used to support but were not reported. As with all probability samples, estimates from our case file review are subject to sampling errors. Sampling errors occur because we use a sample to draw conclusions about a larger population. If a different sample had been taken, the results might have been different. To recognize the possibility that other samples might have yielded other results, we express our confidence in the precision of our particular sample’s results as a 95 percent confidence interval. The 95 percent confidence interval is expected to include the population value for 95 percent of samples of this type. When we make estimates for this population, we are 95 percent confident that the results we obtained are within plus or minus 8 percentage points of what we would have obtained if we had included the entire population within our review, unless otherwise noted. The text of our report provides more specific confidence intervals for various estimates. We selected the sample from within six strata, consisting of allowance and denial decisions and the three most prevalent primary impairments among medical allowances for children with mental impairments—ADHD, speech and language delay, and autism. We sampled approximately the same number of cases from each stratum in order to ensure that the sample sizes were sufficient to produce precise estimates within each combination of impairment and decision. When generalizing to the overall population and to various subpopulations, we weighted each case according to its probability of selection, which varied across strata due to differences in the number of cases in the stratum populations. We conducted this performance audit from February 2011 to June 2012 in accordance with generally accepted government auditing standards. Those standards require that we plan and perform the audit to obtain sufficient, appropriate evidence to provide a reasonable basis for our findings and conclusions based on our audit objectives. We believe the evidence obtained provides a reasonable basis for findings and conclusions based on our audit objectives. The structure of the mental disorders listings for children under age 18 parallels the structure for the mental disorders listings for adults but is modified to reflect the presentation of mental disorders in children. Under federal regulations, when a child is not performing substantial gainful activity and the impairment is severe, the Social Security Administration (SSA) will examine whether the child’s impairment meets, medically equals, or functionally equals any of the impairments contained in the listings. The listings further describe the level of severity necessary to meet these requirements. The listings for mental disorders in children are grouped into 11 diagnostic categories: Organic mental disorders. Abnormalities in perception, cognition, affect, or behavior associated with dysfunction of the brain. The history and physical examination or laboratory tests, including psychological or neuropsychological tests, demonstrate or support the presence of an organic factor judged to be etiologically related to the abnormal mental state and associated deficit or loss of specific cognitive abilities, or affective changes, or loss of previously acquired functional abilities. Schizophrenic, delusional (paranoid), schizoaffective, and other psychotic disorders. Onset of psychotic features, characterized by a marked disturbance of thinking, feeling, and behavior, with deterioration from a previous level of functioning or failure to achieve the expected level of social functioning. Mood disorders. Characterized by a disturbance of mood (referring to a prolonged emotion that colors the whole psychic life, generally involving either depression or elation), accompanied by a full or partial manic or depressive syndrome. Mental retardation. Characterized by significantly sub-average general intellectual functioning with deficits in adaptive functioning. Anxiety disorders. In these disorders, anxiety is either the predominant disturbance or is experienced if the individual attempts to master symptoms; for example, confronting the dreaded object or situation in a phobic disorder, attempting to go to school in a separation anxiety disorder, resisting the obsessions or compulsions in an obsessive compulsive disorder, or confronting strangers or peers in avoidant disorders. Somatoform, eating, and tic disorders. Manifested by physical symptoms for which there are no demonstrable organic findings or known physiologic mechanisms; or eating or tic disorders with physical manifestations. Personality disorders. Manifested by pervasive, inflexible, and maladaptive personality traits, which are typical of the child’s long-term functioning and not limited to discrete episodes of illness. Psychoactive substance dependence disorders. Manifested by a cluster of cognitive, behavioral, and physiologic symptoms that indicate impaired control of psychoactive substance use with continued use of the substance despite adverse consequences. Autistic disorder and other pervasive developmental disorders. Characterized by qualitative deficits in the development of reciprocal social interaction, in the development of verbal and nonverbal communication skills, and in imaginative activity. Often, there is a markedly restricted repertoire of activities and interests, which frequently are stereotyped and repetitive. Attention deficit hyperactivity disorder. Manifested by developmentally inappropriate degrees of inattention, impulsiveness, and hyperactivity. Developmental and emotional disorders of newborn and younger infants (birth to attainment of age 1): Developmental or emotional disorders of infancy are evidenced by a deficit or lag in the areas of motor, cognitive/communicative, or social functioning. These disorders may be related either to organic or to functional factors or to a combination of these factors. According to SSA, these listings are examples of common mental disorders that are severe enough to result in a child being disabled. When a child has a medically determinable impairment that is not listed, an impairment that does not meet the requirements of a listing, or a combination of impairments in which none meets the requirements of a listing, SSA will make a determination whether the child’s impairment or impairments medically or functionally equal the listings. This can be especially important in older infants and toddlers (age 1 to attainment of age 3), who may be too young for identification of a specific diagnosis, yet demonstrate serious functional limitations. Therefore, the determination of equivalency is necessary to the evaluation of any child’s case when the child does not have an impairment that meets a listing. Social Security Administration (SSA) data show that the three most prevalent primary mental impairments among those children allowed for Supplemental Security Income (SSI) benefits in fiscal year 2011 were for (1) attention deficit disorder or attention deficit hyperactivity disorder (ADHD), (2) speech and language delay, and (3) autistic disorder and other pervasive development disorders (autism). These data are based on the primary impairment as designated by the disability determination services (DDS) examiner. SSA’s policy operations manual directs DDS examiners to code the primary impairment as the most severe condition that rendered the child disabled. However, SSA officials have acknowledged that primary impairment codes are sometimes missing or inaccurately coded. The following information provides a brief summary of each of these three primary impairments as they compare to the incidence of all mental impairments, as well as in terms of the proportion of applications, allowances, and receipts. Data represented as “applications” reflect SSI benefit claims where a DDS examiner made an initial disability determination decision. Some applications may have been submitted prior to the year when a determination was made. In addition, some applications could have more than one determination if the claim is selected for a quality review or if the disability claim is updated during the same year. ADHD. From fiscal years 2000 to 2011, applications for this condition as a primary impairment more than doubled, from about 55,204 to 124,217, while allowances have also doubled from 13,857 to 29,872 (see fig. 10). By December 2011, almost 221,000 such children were receiving SSI benefits, and they comprised 26 percent of child recipients with mental impairments on the rolls. While children with ADHD represent the single largest primary diagnostic group, SSA has denied the majority of ADHD child applicants since fiscal year 2000, because they were not medically eligible. Some DDS examiners we interviewed said that they rarely find a child medically eligible for benefits solely on the basis of a ADHD impairment alone, but more commonly in combination with another impairment, such as oppositional defiant disorder. In our case file review, we found 37 of 50 ADHD allowances had a secondary impairment present, and oppositional defiant disorder was the secondary impairment cited most frequently in the individual cases we reviewed. SSA officials suggested that the increase in both applications and allowances for children with ADHD might be attributable to an increase in diagnoses over the last decade, and cited a National Institute of Health survey finding that ADHD diagnoses had increased by 3 percent, on average, from 1996 to 2006 and by 5.5 percent, on average, from 2003 to SSA officials also noted a 2008 medical study reporting that ADHD 2007. is one of the most commonly diagnosed childhood neurobehavioral disorders.that attention deficit disorder and ADHD are among the most common childhood disorders in the United States. In addition, the National Institute of Mental Health has stated Speech and language delays. Since fiscal year 2000, both applications and allowances for children with speech and language delays have increased overall, but the proportion of applicants found medically eligible has ranged from 54 to 61 percent during this period. From fiscal year 2000 to 2011, applications for this impairment more than doubled, from 21,615 to 51,740 while the number of children allowed increased from 11,565 to 29,309 (see fig. 11). Some DDS officials we interviewed attributed the increased number of children applying for and receiving SSI benefits to speech and language delay to increased school testing and screening program services offered under the Individuals with Disabilities Education Act (IDEA). The U.S. Department of Education noted in their latest annual report that teachers indicated that 89 percent of the children aged 3 through 5 years served under IDEA received speech or language therapy in the 2003 to 2004 school year, and 86 percent received it in the 2004 to 2005 school year, making it the most common service in both years.that speech and language impairments were one of the most common disability categories among students aged 6 through 21 years served under IDEA, Part B, in the fall of 2006. Of these more than 6 million students aged 6 through 21 years, about 1.2 million, or 19.1 percent, received services due to a speech and language impairment. In addition, they noted Some speech and language experts from across the United States told us that they were surprised by the increased number of children receiving SSI benefits, but acknowledged that the definitions of disability for IDEA and the SSI program are different. They added that in some instances speech and language disorder may be a provisional diagnosis for very young children when it may be difficult to pinpoint a specific impairment or impairments, which they believed could be contributing to program growth. SSA officials told us that further study was needed to better understand increases of this impairment. As of February 2012, SSA was considering whether to propose new rules for evaluating language and speech and disorders. Autism. From fiscal year 2000 to 2011, autism applications increased by almost 400 percent from 5,430 to 26,739, and allowances increased similarly from 5,050 to 22,931 (see fig.12). As of December 2011, about 107,000 (12 percent) children with mental impairments were receiving SSI benefits due to autistic disorders. From fiscal year 2000 to 2011, DDS examiners found from 86 to 94 percent of those children applying for SSI on the basis of autism medically eligible for benefits. SSA officials primarily attribute the increase in the number of autism applications and allowances over the years to greater incidences of autism among children and explained that some children who may have previously been diagnosed as intellectually disabled are instead being diagnosed as autistic. In fact, the number of children applying for and receiving SSI benefits due to “intellectual disability” or “mental retardation” has significantly declined since fiscal year 2000. Children receiving benefits due to an intellectual disability comprised 51 percent of all mental claims in fiscal year 2000 and 15 percent in fiscal year 2011. According to one study SSA cited, the prevalence of autism in children has increased by 2.5 percent, from 0.6 per 1,000 live births in 1994 to 3.1 per 1,000 live births in 2003, while during the same period, the prevalence of mental retardation and learning disabilities declined by 2.8 and 8.3 per 1,000, respectively. In addition, the Centers for Disease Controls and Prevention estimated in March 2012 that on average 1 in 88 children in the United States has an autism spectrum disorder, but the extent to which this reflects increases in awareness and access to services or actual increases in the prevalence of autism symptoms is not known. On the basis of our case file review, we also identified some characteristics of children for whom SSA made an initial determination in fiscal year 2010 for ADHD, speech and language delay, and autism. For example, as shown in figure 13, more than 60 percent of these children had ADHD. The age at which SSA determined whether a child was medically eligible for benefits varied by impairment (see fig. 14). Children with ADHD who applied for benefits were older, on average, than applicants with autism or speech and language delay. Based on our case file review, we estimate that 72 percent of these children were male, although gender composition also varied by impairment (see fig. 15). As discussed in appendix I of this report, we reviewed case files from a stratified probability sample of determinations made in fiscal year 2010. In our review of a generalizable probability sample of 298 initial determinations performed in fiscal year 2010 for children with alleged attention deficit hyperactivity disorder (ADHD), speech and language delay, and autistic disorder and other pervasive development disorders (autism), we found parents reported that their children were prescribed some form of medication in 58 percent of these cases. More specifically, parents reported that their children were prescribed psychotropic drugs in 47 percent of these cases (see table 1). Children with ADHD accounted for the vast majority of those reportedly using medication or psychotropic drugs—79 percent and 90 percent, respectively (see table 2). The most commonly reported psychotropic drugs were Concerta, Ritalin, and Adderall, which are prescribed to treat ADHD, as well as Risperdal, which is an antipsychotic. Of children reportedly prescribed psychotropic drugs, the majority reported using one psychotropic drug. In addition to the contact named above, Jeremy Cox (Assistant Director), James Bennett, Alexander Galuten, Jason Holsclaw, Kristen Jones, Sheila McCoy, Luann Moy, Ernest Powell, Jeff Tessin, and Paul Wright made key contributions to this report and the related e-supplement.

Summary: SSAs SSI program provides cash benefits to eligible low-income individuals with disabilities, including children. In 2011, SSA paid more than $9 billion to about 1.3 million disabled children, the majority of whom received benefits due to a mental impairment. GAO was asked to assess (1) trends in the rate of children receiving SSI benefits due to mental impairments over the past decade; (2) the role that medical and nonmedical information, such as medication and school records, play in the initial determination of a childs eligibility; and (3) steps SSA has taken to monitor the continued medical eligibility of these children. To do this, GAO analyzed program data; interviewed SSA officials; conducted site visits to 9 field offices and 11 state DDS offices across the nation; reviewed a generalizable sample of 298 claims for select impairments from fiscal year 2010; reviewed relevant federal laws and regulations; and interviewed external experts, among others. The number of Supplemental Security Income (SSI) child applicants and recipients with mental impairments has increased substantially for more than a decade, even though the Social Security Administration (SSA) denied, on average, 54 percent of such claims from fiscal years 2000 to 2011. Factors such as the rising number of children in poverty and increasing diagnosis of certain mental impairments have likely contributed to this growth. In fiscal year 2011, the most prevalent primary mental impairments among children found medically eligible were (1) attention deficit hyperactivity disorder, (2) speech and language delay, and (3) autism, with autism claims growing most rapidly since fiscal year 2000. State disability determination services (DDS) examiners also consider the impact of additional, or secondary, impairments when making a decision, and when present, these impairments were used to support 55 percent of those cases GAO reviewed that were allowed in fiscal year 2010. However, SSA has not consistently collected those impairment data, limiting its understanding of how all impairments may affect decisions. DDS examiners generally rely on a combination of key medical and nonmedical informationsuch as medical records and teacher assessmentsto determine a childs medical eligibility for SSI. In its case file review, GAO found that examiners usually cited four to five information sources as the basis for their decision, and that being on medication was never the sole source of support for decisions. Moreover, examiners cited medication and treatment information, such as reports of improved functioning, as a basis for denying benefits in more than half of cases that GAO reviewed, despite a perception among some parents that medicating their child would result in an award of benefits. Examiners also reported they sometimes lacked complete information to inform their decision making. For example, several DDS offices reported obstacles to obtaining information from schools, which they believe to be critical in understanding how a child functions. Examiners also do not routinely receive information from SSA field offices on multiple children who receive benefits in the same household, which SSAs fraud investigations unit has noted as an indicator of possible fraud or abuse. Without such information, examiners may be limited in their ability to identify threats to program integrity. SSA has conducted fewer continuing disability reviews (CDR) for children since 2000, even though it is generally required by law to review the medical eligibility of certain children at least every 3 years. From fiscal year 2000 to 2011, childhood CDRs overall fell from more than 150,000 to about 45,000 (a 70 percent decrease), while CDRs for children with mental impairments dropped from more than 84,000 to about 16,000 (an 80 percent decrease). The most recent data show that more than 400,000 CDRs were overdue for children with mental impairments, with some pending by as many as 13 years or more. Of the more than 24,000 CDRs found to be 6 or more years overdue, 25 percent were for children expected to medically improve within 6 to 18 months of their initial allowance. SSA acknowledged the importance of conducting such reviews, but said that due to resource constraints and other workloads, such as initial claims, most childhood CDRs are a lower priority. SSAs process for issuing waivers from the CDR legal requirement lacks transparency, and without these reviews, SSA could continue to forgo significant program savings. GAO recommends that SSA take steps to ensure needed information, such as secondary impairment data and school records, is consistently collected; make its CDR waiver process more transparent; and conduct additional childhood CDRs. SSA agreed with four recommendations and disagreed with one that the agency conduct additional childhood CDRs, citing resource constraints. The GAO recommendation acknowledges resource constraints, as discussed more fully within the report.