Supplemental Security Income: Preliminary Observations on Children with Mental Impairments
Released: 2011-10-27T00:00:00

Letter

Background

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 as well as certain aged individuals who meet financial eligibility requirements and SSA’s definition of disability. For children, a disability is a medically determinable physical or mental impairment that results in certain functional limitations, and is expected to result in death or which 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 current and future needs, including food, clothing, and shelter. The maximum payment for a child receiving SSI benefits is $674 per month regardless of the severity of the child’s impairment. As of December 2010, the average monthly child benefit was $597.

To apply for benefits, the child’s parent or guardian usually submits an application to SSA either in person at a local SSA field office, by telephone, or by mail. SSA’s field offices are responsible for processing these applications and for verifying the child’s and legal guardian’s nonmedical eligibility requirements, including income, resources, and living arrangement information. After initial verification, the field office transmits the case file to their state disability determination services office for a medical evaluation. 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, DDS makes every reasonable effort to ensure that a qualified psychiatrist or psychologist has completed the medical portion of the case review.

After it makes its initial determination, the DDS returns the case file to the field office, where SSA completes any outstanding non-disability case development, computes the benefit amount, and begins paying benefits if the claimant was determined disabled. If the claim is denied, a claimant has 60 days to request that SSA 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.

After SSA determines that a child is disabled, the agency is required by law, in certain circumstances, to conduct periodic reviews, known as a continuing disability review (CDR), to verify a child’s continued medical eligibility for receiving SSI benefits. 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 beneficiaries 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 beneficiary’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 required to redetermine the eligibility of children against the adult criteria for disability after they reach age 18.

Number of Children Applying for and Receiving SSI Benefits Due to Mental Impairments Has Increased

The numbers of children applying for and receiving SSI benefits due to a mental impairment has increased over the past decade and now comprise a growing majority of all child beneficiaries. While not all such children who are deemed medically eligible ultimately meet SSI’s financial eligibility requirements, our preliminary analysis of medical allowances suggests that the growth in the number of child beneficiaries is roughly proportionate to the growth in the number of applicants. Furthermore, SSA data showed that the agency has denied a majority of child applicants each year. Between fiscal years 2000 and 2010, the average medical allowance rates for children with physical and mental impairments were about 37 and 46 percent, respectively (see fig.1).

SSA data show the number of child applicants with mental impairments increased 60 percent between fiscal year 2000 and fiscal year 2010, from 187,052 to 298,264, while the total number of SSI child beneficiaries with mental impairments on the rolls grew 52 percent from 543,000 to 827,000 (see fig. 2). Our preliminary research suggests that several factors may have contributed to the increased number of child applicants and beneficiaries, including but not limited to SSA’s and child advocates’ outreach efforts, improved access to health insurance for children, the rising number of children living in poverty, and increased diagnosis of certain mental impairments. However, the relative effects of these and other factors on program growth are not fully known at this time.

While it is unclear how various factors are contributing to growth at this time, SSA data show that since fiscal year 2000, children with mental impairments have represented the majority of all child applications and medical allowances for SSI benefits. For example, in fiscal year 2010, about 62 percent of all SSI child applicants had a mental impairment as a primary diagnosis, and about 67 percent of those applicants were medically approved for benefits. For those applicant children with mental impairments, SSA data also suggests that 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 disorders—between fiscal years 2000 and 2010, with the exception of intellectual disability as most notable (see fig. 3).

As part of our preliminary work, we examined individual mental impairments to determine which impairments had the highest number of applications and medical allowances. SSA’s data on disability determinations is based on the primary impairment as designated by the DDS. SSA’s policy operations manual directs DDS examiners to code the primary impairment as the most severe condition that rendered the child disabled. In instances where multiple impairments are present, the secondary impairment is generally the next most severe following the primary. However, SSA officials have acknowledged that primary impairment codes are sometimes missing or inaccurately coded. In addition, the primary impairment code listed may be only one of several impairments that led DDS examiners to find the child medically eligible for benefits. In our ongoing review, we plan to conduct an in-depth case file review to determine the extent to which a secondary impairment was present for the most prevalent impairments and the extent to which the secondary impairment, or combination of impairments, influenced the eligibility decision. SSA data show that for fiscal year 2010, the three most prevalent primary mental impairments among medical allowances were for (1) attention deficit disorder/attention deficit hyperactivity disorder (ADD/ADHD), (2) speech and language delay, and (3) autistic disorder and other pervasive development disorders (autism). The following information provides a brief summary of each of these three impairments as they compare to the incidence of all mental impairments, as well as in terms of the proportion of applications and medical allowances: ADD/ADHD. Between fiscal years 2000 to 2010, applications for this condition as a primary impairment more than doubled, from about 55,000 to 113,000. Also, the number of children found to be medically eligible increased by more than 100 percent, from 13,857 to 30,108 (see fig. 4). By December 2010, about 212,000 such children were receiving SSI benefits, and they comprised 26 percent of child recipients with mental impairments.

While children with ADD/ADHD represent the single largest primary diagnostic group, SSA data show that the majority of ADD/ADHD applications over the years have been medically denied. Some of the examiners we interviewed said that they rarely find a child medically eligible for benefits solely on the basis of an ADD/ADHD impairment alone, but more commonly in combination with another impairment, such as asthma or oppositional defiant disorder. Nevertheless, SSA officials suggested that the increase in both applications and medical allowances for children with ADD/ADHD might be attributable to an increase in diagnosis over the last decade, and cited a National Institute of Health survey finding that ADHD diagnoses had increased, on average, by 3 percent from 1996 to 2006 and by 5.5 percent, on average, from 2003 to 2007. SSA officials also noted a 2008 medical study reporting that ADHD is one of the most commonly diagnosed childhood neurobehavioral disorders.

Speech and language delay. During the last decade, both applications and medical allowances for children with speech and language delay have increased overall, but the proportion of applicants found medically eligible has remained relatively stable over time. Between fiscal years 2000 to 2010, applications for this impairment more than doubled, from 21,615 to 49,664 while the number of children found to be medically eligible nearly tripled, from 11,565 to 29,147 (see fig. 5). As of December 2010, about 174,000 (21 percent) children with mental impairments were receiving benefits due to a speech and language delay. While some DDS officials expressed the view that increases could be attributed to increased school testing and screening programs, SSA officials said further study was needed to better understand these particular increases.

Autism. Between fiscal years 2000 and 2010, autism applications more than quadrupled from 5,430 to 23,203, and medical allowances increased similarly from 5,050 to 20,319 (see fig. 6). As of December 2010, about 95,000 (11 percent) children with mental impairments were receiving SSI benefits due to autism. DDS examiners have generally found the vast majority of those children applying for SSI on the basis of autism medically eligible for benefits. SSA officials attributed the increase in the number of autism applications and medical allowances over the years to greater incidence of autism among children and explained that some children who may have previously been diagnosed as intellectually disabled are instead being diagnosed as autistic. According to one study SSA cited, the prevalence of autism in children has increased from 0.6 per 1,000 live births in 1994 to 3.1 per 1,000 live births in 2003, while the prevalence of intellectual disability decreased by 2.8 per 1,000 live births in 2003.

Examiners Report Using a Combination of Key Information Sources in Determining Medical Eligibility

In our preliminary work, DDS officials reported that they rely on a combination of key medical and nonmedical information—such as medical records, prescribed medications, school records, and teacher and parent assessments—in determining a child’s medical eligibility. Several DDS officials 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. With regard to the medical information used by examiners, 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. 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 existing evidence is inconclusive, some DDS officials we spoke with said that they will purchase a consultative examination for the child. This examination is intended to provide the additional medical evidence, such as results of a physical examination and laboratory findings, needed for a determination. 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 over time. 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 response to concerns among many about the role medication plays in the determination process, we asked SSA and DDS officials how information about a child’s use of prescribed medications is used, and they told us it is generally given no more weight than any other medical or nonmedical information in determining a child’s medical eligibility. Several DDS officials told us that when making determinations for children with mental impairments, medication is considered in the context of other sources of information as “just one piece of the puzzle.” To the extent that medication improves functioning, some DDS officials told us they could potentially find that the child is not disabled under program rules. Despite this fact, certain field office and DDS officials acknowledged they believe some parents are under the impression that medicating their children will improve their likelihood of being found eligible for benefits. However, other DDS officials said they think a number of parents may avoid medicating their child prior to a consultative examination so that the child misbehaves and appears more disabled.

To better understand the role of prescribed medications, in March 2011, SSA conducted an analysis to determine the effect reported use of medications has on determinations for children with three different mental impairments and concluded that no effect existed. To conduct this review, SSA compiled reports of medication usage for all fiscal year 2010 initial determinations for children with ADD/ADHD, oppositional/defiant disorder, or conduct disorder impairments. For each impairment, SSA calculated the share of allowance and denial decisions for those claims with and without related medications. SSA subsequently noted that for the children examined, those with reports of related medication were more likely to be denied than to be allowed. Although SSA’s analysis indicates that allowance and denial rates were similar for children with ADD/ADHD who were and were not taking related medications, children with related medications were somewhat more likely to be allowed for oppositional/defiant disorder and conduct disorder than those without medications. Because only about one-third of those allowed for these three impairments had reports of related medication, SSA concluded that medication usage does not affect the allowance of child claims for these impairments. However, SSA’s analysis did not control for other factors, such as DDS location or claimant age, which may also affect allowance rates. Without a more in-depth analysis, the effect of the underlying causes of such differences is unknown. Although we did not independently validate SSA’s findings, as part of our ongoing review, we plan to conduct a case file review of a random, generalizable sample of initial determinations decided in fiscal year 2010 for the most prevalent mental impairments—ADD/ADHD, speech and language delay, and autism. As part of this effort, we will identify what sources DDSs reported using to determine the child’s medical eligibility and how they reported weighing various sources if material inconsistencies could not be resolved. This case file review should allow us to verify testimonial evidence from interviews with field office and DDS officials.

In addition to medical evidence, SSA policy directs DDS offices to use available evidence from nonmedical sources to evaluate the severity of the child’s impairment and functioning as part of the eligibility determination. These sources include parents, day care 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 when the parent submits the application, in person, and the field office may notify the DDS if multiple siblings apply for benefits at the same time. Several DDS officials told us school records and teacher assessments (standardized questionnaires) are especially critical, because these assessments provide information on the child’s functioning over time and are generally more objective than parent assessments. Because parents may be unable to accurately assess the extent of their child’s impairment, nearly all the DDS officials we interviewed said that information from the school, including the teacher assessment, was critical for making accurate determinations. According to some DDS officials, parents may primarily observe their child in an unstructured home environment after the child’s medications have worn off, and they 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. Several DDS officials told us that they compare all the information they collect to identify inconsistencies and decide how much weight to assign 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.

Despite the importance of nonmedical information in determining a child’s medical eligibility, our preliminary work shows that examiners sometimes face challenges obtaining complete information. For example, some 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. In addition, DDS examiners told us that they do not routinely receive information 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 potential fraud or abuse, particularly where certain mental impairments are involved. For example, SSA recently 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. However, investigators found that the school guidance counselor had never observed the children exhibiting symptoms of ADHD despite seeing them 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. 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. Without such information, DDS examiners may be limited in their abilities to identify potential fraud or abuse in the program.

SSA Has Conducted Significantly Fewer CDRs for SSI Children with Mental Impairments

SSA is required to periodically review the medical eligibility of certain individuals, though our preliminary work shows that SSA has conducted significantly fewer CDRs for children receiving SSI benefits in recent years, including those with mental impairments. Between fiscal years 2000 and 2010, childhood CDRs for those recipients under age 18 and age 18 redeterminations overall fell from more than 200,000 to about 126,000 (a 38 percent decrease), and more specifically, childhood CDRs for those with mental impairments declined from more than 84,000 to about 13,000 (an 84 percent decrease) (see fig. 7). SSA officials attribute the decrease in CDRs overall 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 between fiscal years 1996 and 2002, CDRs decreased once the funding expired.

SSA has conducted fewer childhood CDRs in recent years. As of August 1, 2011, SSA had not yet conducted CDRs for about 434,000 SSI recipients under age 18 with mental impairments who had reached their scheduled CDR date (see fig. 8). Of these recipients, about 343,000 (79 percent) had exceeded the scheduled date by at least a year, with about 205,000 (47percent) exceeding their date by 3 years and 24,400 (6 percent) exceeding by 6 years. SSA data also indicate that while age 18 redeterminations are conducted in a more timely manner, about 8 percent of these reviews are also overdue by 3 years or more. In September 2011, SSA’s Office of the Inspector General also reported that SSA had not completed all childhood CDRs and age 18 redeterminations in a timely manner. When reviews of benefits are delayed or not conducted, some beneficiaries may receive benefits for which they are no longer eligible. The Inspector General estimated that SSA had paid about $1.4 billion in SSI benefits to approximately 513,000 recipients under age 18 who should not have received them. SSA has recently estimated that that the CDR process yielded a savings-to-cost ratio of roughly $12.50 to $1 in fiscal year 2009, and that those CDRs conducted for adults and children combined in fiscal year 2009 will save federal programs an estimated $4.6 billion.

Of those reviews conducted for child recipients in recent years, the vast majority were for age 18 redeterminations and low-birth weight babies. SSA is generally required by law to conduct age 18 redeterminations, within 1 year after a child turns 18, and within 12 months after the birth of a child who was allowed benefits because of low birth weight. In fiscal year 2010, 87 percent of CDRs conducted for child recipients were done in these two areas, and SSA subsequently terminated benefits for about 52 percent of age 18 recipients and 60 percent of low birth weight recipients. The remaining 13 percent of CDRs conducted were mostly reviews of children with mental impairments. Of those CDRs conducted for children under age 18 with mental impairments, SSA terminated benefits for about 24 percent of recipients in fiscal year 2010, and personality disorders and speech and language delay had the highest cessation rates (34 and 33 percent, respectively).

SSA and DDS officials have acknowledged that the agency is not conducting reviews for child recipients in a timely manner, and in some cases, they have not conducted required childhood CDRs prior to a child’s age 18 redeterminations. SSA officials said that they would like to conduct additional childhood CDRs, but added that due mostly to funding constraints they are not able to do so. From 1996 to 2002, Congress provided funding to SSA to conduct additional CDRs for both Social Security disability and SSI beneficiaries. Since this funding expired, the number of CDRs SSA has conducted overall has dramatically declined. The recently enacted Budget Control Act of 2011 authorized an increase in funding for CDRs and redeterminations under both the SSI and the Social Security Disability Insurance programs, starting with an additional $623 million in fiscal year 2012 and reaching an additional $1.3 billion in each of fiscal years 2017 to 2021. At the time of this statement, SSA was evaluating how to use this funding for CDRs, should it be appropriated, and it is not yet known to what extent the agency would (a) increase the number of childhood CDRs in the future or (b) target such CDRs toward those mental impairments with the highest cessation rates.

Mr. Chairman and Members of the Subcommittee, this concludes my prepared statement. I will be happy to respond to any questions.

GAO Contact and Staff Acknowledgments

For further information related to this statement, please contact me at (202) 512-7215. Individuals who may key contributions to this statement include Jeremy Cox, Assistant Director, James Bennett, Edward Bodine, Sue Bernstein, David Chrisinger, Alex Galuten, Monika Gomez, Jason Holsclaw, Kristen Jones, Sheila McCoy, Luann Moy, and Paul Wright.

Appendix I: Listings for Mental Disorders for Children under Age 18

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, SSA is required to examine whether the child’s impairment meets, medically equals, or functionally equals any of the impairments contained in the listings. The actual listings go into further detail about the level of severity necessary for this step of the determination, but the general listings for mental disorders in children are arranged in 11 diagnostic categories. These categories include: 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; e.g., 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 find a child 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 none of which meets the requirements of a listing, SSA will make a determination whether the child’s impairment(s) medically or functionally equals the listings. This determination 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 or medically equals a listing.

This is a work of the U.S. government and is not subject to copyright protection in the United States. The published product may be reproduced and distributed in its entirety without further permission from GAO. However, because this work may contain copyrighted images or other material, permission from the copyright holder may be necessary if you wish to reproduce this material separately.