Speech and Language Disorders in Children: Implications for the Social Security Administration's Supplemental Security Income Program (2016)

Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

4 Supplemental Security Income for Children with Speech and Language Disorders Preceding chapters address the role of speech and language in the health and development of children, factors associated with speech and language disorders and their impact (especially when the disorders are severe), the disorders’ persistence, and approaches to and prospects for treatment. This chapter offers a programmatic context for the committee’s task, which is to examine the intersection of speech and language disorders in children and the Supplemental Security Income (SSI) program. The chapter reviews the purpose of the SSI program for children, as well as how this purpose is ac- complished through the program’s design and operations. It also considers the application of this programmatic design and these operational features to children from low-income, resource-limited households with suspected speech and language disorders potentially severe enough to make them eligible for SSI benefits. This committee was tasked with comparing trends in the prevalence and persistence of speech and language disorders among the general popu- lation of children under 18 and those who receive SSI. The purpose of this comparison is to provide the Social Security Administration (SSA) with insight into the extent to which the proportion of children receiving SSI benefits for speech and language disorders can be considered reasonable given (1) the proportion of children in the general population with such impairments, (2) the interaction between poverty and disability generally and poverty and speech and language disorders in particular, and (3) the SSI eligibility criteria and decision-making process. Therefore, understanding the SSI program design and process is integral to understanding the health 125 

126 SPEECH AND LANGUAGE DISORDERS IN CHILDREN characteristics of children who receive SSI benefits on the basis of speech and language disorders. This chapter begins with an overview of the history of the SSI program for children. It then describes children served by the program and how eligi- bility is determined. Next, the chapter reviews the program’s eligibility and determination process, including the speech and language-related criteria that apply when children’s eligibility is evaluated and the SSA’s process for that evaluation, as well as the number of child SSI recipients that results from this process. The chapter also summarizes the committee’s approach to the use and interpretation of SSI administrative data. The final section presents the committee’s findings and conclusions. HISTORY OF THE SUPPLEMENTAL SECURITY INCOME PROGRAM FOR CHILDREN1 Created by the Social Security Amendments of 1972 (Public Law 92- 603), the SSI program came into effect in 1974 and was developed to replace disparate state-based benefit programs for the needy aged, blind, and disabled population. The program was intended to provide a supple- mental form of income support to particularly disadvantaged households. Administered by the SSA, the program provides monthly payments to persons who meet its eligibility standards. SSI recipients include children whose health conditions or disabilities are severe enough to meet the pro- gram’s disability eligibility criteria and whose family income and assets do not exceed limits imposed by the SSA (Fremstad and Vallas, 2012). In December 2014, nearly 1.3 million children were receiving SSI payments (SSA, 2015b). The administration of the SSI program is complex—the product of the legislation itself, its implementing regulations, and important judicial deci- sions. Understanding how the program has evolved over the past 40 years is essential to understanding disability trends observed among children participating in the program. Understanding the program’s evolution in turn requires disentangling the standards and procedures under the statute and its implementing regulations. The following subsections provide a brief overview; a more detailed version of the program’s history can be found in the recent report Mental Disorders and Disabilities Among Low-Income Children (NASEM, 2015). When signed into law by President Nixon in 1972, the children’s SSI program had a simple aim: “Disabled children living in low-income 1  Much of this section on the history of the SSI program was adapted from the concurrent study on mental disorders in children, Mental Disorders and Disabilities Among Low-Income Children (NASEM, 2015). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 127 households are among the most disadvantaged of all Americans and are deserving of special assistance. . . . Poor children with disabilities should be eligible for SSI benefits because their needs are often greater than non- disabled children” (U.S. House of Representatives, 1971). SSI eligibility standards for children have evolved in three distinct phases. The first phase extended from program implementation in 1974 to 1990. The second phase began in 1990 with the U.S. Supreme Court’s decision in Sullivan v. Zebley2 and lasted until the third phase. That phase began with the 1996 passage of the Personal Responsibility and Work Opportunity Reconciliation Act,3 which narrowed the definition of dis- ability for children. Each phase is described in turn below. SSI Childhood Disability Eligibility Standards from 1974 to 1990 From 1974 to 1990, the Social Security Act set a “comparable severity standard” for determining children’s eligibility for benefits. Specifically, the statute allowed eligibility “in the case of a child under the age of 18, if he suffers from any medically determinable physical or mental impairment of comparable severity . . . to one that would result in disability in an adult.” In its initial interpretation and application of this standard, the SSA used an approach that was significantly narrower than that used for adults. In the case of adults, a determination of disability is based on a “five-step test.”4 This test begins by assessing (1) whether the adult is engaged in substantial gainful activity and (2) whether the adult’s disability can be expected to last at least 1 year (the durational standard) or result in death. If both of these conditions are met, then in the third step, the SSA determines whether the claimant’s impairment either “matches or is equal to” one of the listed medical impairments in the SSA’s Listing of Impairments5—or “Listings”— for adults. If so, the adult is determined to qualify for SSI benefits. If not, then in the fourth and fifth steps, the SSA evaluates “whether the claimant can do his own past work or any other work that exists in the national economy.”6 In the period between implementation of the program and the Zebley court decision in 1990, children’s eligibility determinations underwent only the first three steps used for adults (i.e., a review of substantial gainful 2  Sullivan v. Zebley, 493 U.S. 521 (1990). 3  Personal Responsibility and Work Opportunity Reconciliation Act, Public Law 104-193 (104th Congress). 4  The disability determination process for adults continues to include the “five-step test”; see http://www.ssa.gov/policy/docs/rsnotes/rsn2013-01.html (accessed September 30, 2015). 5  The Listing of Impairments was issued by the SSA and used to identify medical conditions for purposes of determining disability (see the glossary of terms in Appendix A). 6  493 U.S. at 523-524. 

128 SPEECH AND LANGUAGE DISORDERS IN CHILDREN activity, the minimum duration requirement, and meeting or equaling one of the Listings). In other words, the eligibility determination process for children was an abbreviated7 version of the adult test, lacking the fourth and fifth steps because they addressed employment-related questions that did not apply to most children. Therefore, if a child did not satisfy the third step of the test—that is, did not have an impairment that either matched or medically equaled a listed impairment for adults—benefits would be de- nied. There then would be “no further inquiry,”8 even though the level of disability required to meet or equal a Listing was higher than the statutory requirement for degree of disability. Sullivan v. Zebley and Its Impact (1990-1996) In 1990, the U.S. Supreme Court decided Sullivan v. Zebley, a land- mark case originally filed in 1983. This case challenged the legality of the SSA’s implementation of the SSI children’s program. The plaintiffs argued that by failing to include an assessment of function in the determination of children’s eligibility, the SSA’s standards and procedures contravened the terms of the SSI statute itself. The plaintiffs’ argument was based on the fact that although the law specified that a child would qualify for benefits if “he suffers from any . . . impairment of comparable severity to one that would render an adult unable to engage in any substantial gainful activity,”9 the SSA had failed to ensure equal treatment by its failure to develop a func- tional test for children. “In plain words, the . . . provisions mean that a child is entitled to benefits if his impairment is as severe as one that would prevent an adult from working.”10 The Supreme Court ruled in Zebley that the SSA’s Listings-only policy for determining children’s disability status was inconsistent with the pro- gram’s “comparable severity” standard. The Court asserted that for chil- dren, the “Secretary explicitly has set the medical criteria defining the listed impairments at a higher level of severity than the statutory standard.”11 According to the Court, this omission amounted to a violation of the law because “the Listings obviously do not cover all illnesses and abnormalities that actually can be disabling.”12 Indeed, the Court noted that the 1979 rules themselves made clear that the Listings did not offer a complete de- scription of children’s disability, since they stated that “the Listing criteria 7  493 U.S. at 523-524. 8  493 U.S. at 526. 9  493 U.S. at 526. 10  493 U.S. at 529. 11  529 U.S. at 530. 12  529 U.S. at 530. 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 129 are intended to identify the more commonly occurring impairments.”13 Furthermore, the Court pointed out that even those medical conditions covered in the SSA’s Listings use definitions that exceed the level of sever- ity specified in the law itself. As a result, the inability to meet or equal the standards of the Listings had the potential to exclude claimants with impairments severe enough to preclude substantial gainful activity but not severe enough to prevent any gainful activity.14 The Court determined that the SSA’s approach excluded not only claimants whose impairments “actu- ally” precluded work but also those “who have unlisted impairments, or [a] combination of impairments, that do not fulfill all of the criteria for any one listed impairment.”15 For these reasons, the “child-disability regulations are simply inconsistent with the statutory standard of ‘comparable severity.’”16 Holding that the SSA’s standard was “manifestly contrary to the statute” because it lacked an individualized functional assessment, the Court’s deci- sion led to a new approach to determining disability in children. In implementing Zebley, the SSA issued new regulations that provided for an individual functional assessment for children. This assessment used a severity rating scale to evaluate a child’s day-to-day functioning across six domains.17 It evaluated whether a child’s impairments “substantially” reduced his or her ability to function “independently, appropriately, and effectively in an age-appropriate manner.”18 This functional assessment ex- panded how children who met the program’s financial eligibility standards could be determined to have a qualifying disability. Following Zebley’s implementation, a child’s eligibility might continue to turn on a finding that the applicant had an impairment that met or equaled a Listing and that such impairment could be expected to last for at least 12 months or result in death. Alternatively, and consistent with the determination process used for adults, a child’s eligibility could rest on a determination that one or more impairments substantially reduced age- appropriate, independent, and effective functioning. In mid- to late 1994, the SSA introduced an impairment code for speech and language disorders, which is discussed in detail in the following subsection.19 The adoption of the functional disability test in Zebley’s wake, coupled with new impairment codes and revised Listings for mental disorders that took effect in 1990, had an upward impact on SSI eligibility and enrollment for children and adolescents. Furthermore, as initial application approvals 13  529 U.S. at 530. 14  491 U.S. at 534. 15  491 U.S. at 534. 16  491 U.S. at 536. 17  58 Fed. Reg. 47532 (September 9, 1993). 18  20 C.F.R. § 416.924(a) (1993). 19  Personal communication, J. Firmin, Social Security Administration, June 24, 2015. 

130 SPEECH AND LANGUAGE DISORDERS IN CHILDREN grew, the total number of SSI child beneficiaries also grew. Between 1991 and 1996, SSI child beneficiaries increased from 397,000 to 955,000 (Tambornino et al., 2015). As noted previously, duration of disability is integral to the statutory eligibility test, whose durational standard is intended to identify children and adults who are not just temporarily disabled but whose disabilities can be expected to last a long time. Thus, children whose impairments are expected to subside or diminish will not be found eligible for benefits. Childhood Disability Eligibility Standards: 1996 to the Present The Personal Responsibility and Work Opportunity Reconciliation Act (PRWORA) made sweeping changes to the nation’s welfare program. While the centerpiece of this legislation was abolishing Aid to Families with Dependent Children (AFDC) and creating Temporary Assistance to Needy Families (TANF), the law also established new eligibility restrictions20 ap- plicable to SSI benefits. Of relevance to the present study, the act revised the definition of disability in children by effectively tightening the functional standard. The new statutory standard, which remains in effect today, speci- fied that a child under 18 is considered disabled for SSI benefit purposes if she or he has a “medically determinable physical or mental impairment that results in marked and severe functional limitations”21 and that can be expected to last for a continuous 12-month period or result in death. This terminology narrowed the earlier Zebley standard that was based on whether an impairment “substantially limited” age-appropriate develop- ment. At the same time, the law maintained the recognition that a finding of disability could rest on a functional impact finding. The 1996 amendments further specified that “notwithstanding [a finding of an impairment causing marked and severe functional limitations], no individual under the age of 18 who engages in substantial gainful activity (determined in accordance with regulations . . .) may be considered to be disabled.”22 The amendments also ordered changes to the medical criteria for evaluating mental and emotional disorders and ordered a “discontinuance” of the individualized functional assessment that was in effect at the time of enactment.23 In addition, the act revised the medical improvement review standard for children under 18 to include a determination, through periodic reviews, of whether a child 20  Public Law 104-193, Title II, Subtitle A (§ 200). 21  42 U.S.C. § 1382c, as amended by PRWORA § 211(a). 22  Id. § 211(a). 23  Id. § 211(b). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 131 receiving SSI benefits had an “impairment or combination of impairments [that] no longer results in marked and severe functional limitations.”24 The SSA implemented the SSI children’s amendments of the PRWORA through regulations published in 200025 that eliminated its post-Zebley individualized functional assessment test and implemented the law’s more restrictive “marked and severe functional limitations” standard. As revised, the rules significantly narrowed the functional basis of children’s SSI eligi- bility by establishing a three-step sequential evaluation process, discussed below. After the act was passed, the number of new child SSI beneficiary awards temporarily declined. This occurred in response to both the stricter disability definition and concomitant changes to the children’s eligibility de- termination process (Tambornino et al., 2015). In a 2002 assessment com- missioned by the SSA, it was estimated that by 2001, the revised regulations had led to a 19 percent reduction in the total number of child and young adult SSI recipients (Rogowski et al., 2002). After the 1996 act was passed, mandated reevaluations led to the termination of SSI payments for more than 90,000 children in 1997 (Coe and Rutledge, 2013). Nevertheless, SSI awards for children with mental disorders—which include speech and language disorders—began rising again after 1997 (SSA, 2006b). Changes over time in the prevalence of speech and language disorders among the general population and in SSI program participation are discussed in detail in Chapter 5. SSI ELIGIBILITY AND THE ELIGIBILITY DETERMINATION PROCESS The purpose of the SSI program is to provide cash assistance to indi- viduals with limited income and resources who are age 65 or older, blind (any age), or disabled (any age). In 33 states and the District of Columbia, SSI eligibility also confers Medicaid eligibility, although many children with disabilities may qualify for Medicaid based on family income alone. The value of the income transfer that SSI provides to families is modest because to qualify for benefits, families must have limited means. The modest pay- ment amount is illustrated by the fact that in 2010, nearly one-third of fam- ilies that received the children’s SSI benefit continued to have total family income below the federal poverty level (FPL) (Bailey and Hemmeter, 2014). At the same time, however, the value of the children’s SSI benefit is substantial for many families. Bailey and Hemmeter (2014) estimate that if families that received children’s SSI benefits had not done so, 58.0 percent (n = 692,696) would have had incomes below 100 percent of the FPL (see 24  Id. § 211(c), amending 42 U.S.C. § 1382(a)(4). 25  65 Fed. Reg. 54747 (September 11, 2000). 

132 SPEECH AND LANGUAGE DISORDERS IN CHILDREN 100% Percentage Distribution of Children’s SSI Recipients 90% 26.3% 80% 42.5% 150% or More 70% Federal Poverty 15.7% Level 60% 50% 100-150% 25.9% Federal Poverty 40% Level 30% 58.0% Under 100% 20% Federal Poverty 31.6% Level 10% 0% Without SSI Payments With SSI Payments SSI Payment FIGURE 4-1 Percentage distribution of child SSI recipients, by family income relative to the federal poverty level, with and without SSI payments, September- December 2010. NOTES: In 2010, the federal poverty level for a family of four was $22,050 (HHS, 2015b). The sample size is 1,193,848. Totals do not necessarily equal the sum of Figure 4-1 rounded components. SOURCE: Bailey and Hemmeter, 2014. Figure 4-1). In other words, SSI payments raised family income above the FPL for more than a quarter of families with child SSI beneficiaries (58.0 percent minus 31.6 percent).26 Still, economic vulnerability remains notable for these families. Bailey and Hemmeter (2014) found that approximately 58.0 percent (31.6 percent plus 25.9 percent) of families receiving children’s SSI benefits continued to have incomes below 150 percent of the FPL,27 even after accounting for receipt of the benefit. 26  The federal poverty level (FPL) is set by the U.S. Department of Health and Human Services and varies by the number of people living in the household. In 2015, the FPL for a family of four was $24,250 in the 48 contiguous states, and slightly higher in Alaska and Hawaii ($30,320 and $27,890, respectively) (HHS, 2015a). 27  Poverty researchers typically identify 200 percent of the FPL as the income threshold for adequate subsistence (Boushey et al., 2001). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 133 The Narrow Focus of the Children’s SSI Program From its origins, the SSI program was structured to assist only low- income children and adults with severe disabilities that could be expected to persist over a long period of time or result in death. Although the 1996 amendments preserved the functional test for children’s eligibility determi- nations, they also set as a standard that children must have “marked and severe” disabilities to qualify for the program. As a result, the SSI eligibility determination process evaluates the extent to which physical and mental health conditions are sufficiently severe to impair children’s ability to func- tion. A fundamental aspect of functioning ability is communication through speech and language, as described in previous chapters. As a legal entitlement to cash welfare assistance that is based on income and disability, the SSI program, as a matter of law, is significantly more restrictive in defining disability relative to other disability programs. Other programs that provide educational, social, or health services to children with disabilities and activity limitations are less stringent. By contrast, as discussed in Chapter 5, a far greater universe of children could qualify as “children with special health care needs”28 for state ser- vices furnished under the Title V Maternal and Child Health Block Grant program. (The actual range of those services varies from state to state, as evidenced by state program performance data collected by the Health Resources and Services Administration [HRSA], the federal agency that administers Title V.29) For Title V policy-making and program purposes, the concept of children with special health care needs encompasses not only the narrow group of children who qualify for SSI assistance30 but also a far broader group identified in statute31 and further defined by HRSA as children “who have or are at increased risk for a chronic physical, develop- mental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children gener- ally” (McPherson et al., 1998). As discussed at greater length in Chapter 5, this broader definition of children with special health care needs produces far higher population estimates; government data show that 15.1 percent of all children—a far greater proportion than that represented by the SSI children’s disability program—can be considered “children with special health care needs” (HHS et al., 2013). Similarly, the SSI disability standard for children is much narrower than the standard for determining eligibility for services under the Individuals 28  42 U.S.C. § 701 et seq. 29  Seehttps://mchdata.hrsa.gov/tvisreports/Snapshot/SnapShotMenu.aspx (accessed September 30, 2015). 30  42 U.S.C. § 701(a)(1). 31  42 U.S.C. § 701(a)(1). 

134 SPEECH AND LANGUAGE DISORDERS IN CHILDREN with Disabilities Education Act (IDEA). This law was originally enacted in 1975 to ensure that students with disabilities would have access to a free and appropriate public education. The act explicitly identifies speech and language impairments as a type of disability and defines them as “a communication disorder, such as stuttering, impaired articulation, a lan- guage impairment, or a voice impairment, that adversely affects a child’s educational performance.”32 In contrast to the SSI program, IDEA has no financial eligibility tests, nor does it have severity tests with duration re- quirements. A child will not receive SSI if his or her impairment is expected to improve; however, IDEA provides special education services to children with speech or language impairment regardless of whether the condition is expected to improve. The total number of children receiving IDEA services in the 2012-2013 time period stood at 6.4 million (U.S. Department of Education, 2015), about four times the total number of children entitled to SSI benefits during that time period. Determining SSI Eligibility for Children For a child to receive SSI benefits, two basic conditions must be met: (1) the child must meet criteria for citizenship or alien status, residency, work, income, and resources; and (2) the child must be found to have a severe impairment that meets the statutory and regulatory standards for dis- ability. State agencies that are fully funded by the federal government and work under the guidance and rules of the SSA are responsible for making disability determinations (SSA, 2007). The process for becoming eligible for child SSI benefits begins when an individual files an application with the SSA. The determination process (which the SSA terms the “adjudication process”) proceeds through mul- tiple steps, as illustrated in Figure 4-2. Each step in the process is discussed in detail below. It should be noted that while this report describes the adjudication process as proceeding through four steps, the SSA formally describes it as a three-step process, but with Step 3 having two parts—Step 3a and Step 3b. The Step 3 discussed in this report is the same as the SSA’s Step 3a, while Step 4 is the same as the SSA’s Step 3b. Step 1: Work, Income, and Resources Determination of employment status and financial eligibility is the first step in the determination of a child’s eligibility for SSI disability benefits. The work, income, and resource eligibility criteria must be met prior to any evaluation of disability. 32  34 C.F.R. § 300(8). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 135 FIGURE 4-2  For purposes of this report, the SSI eligibility determination process for children. SOURCE: Wixon and Strand, 2013. 

136 SPEECH AND LANGUAGE DISORDERS IN CHILDREN Once an application for child SSI benefits has been filed, the SSA field office first determines whether the child is engaged in substantial gainful ac- tivity (SGA). SGA33 is defined as work that involves performing significant and productive physical or mental duties and that is done (or intended) for pay or profit (SSA, 2014a). If a child engages in SGA, the claim is denied. If a child is not employed, the field office proceeds to evaluate financial eligibility based on the child’s income and the parents’ and stepparents’ income and resources (Wixon and Strand, 2013). Until a child attains age 18, a portion of his or her parents’ and step- parents’ income is used to determine financial eligibility through a complex process known as deeming. A certain portion of the parents’ and step- parents’ income and resources is “deemed” to be available to the child as a member of the household and therefore counted toward eligibility. Some types of parental income and resources are deemed, and others are not. Income that is not deemed includes TANF, pensions from the U.S. Department of Veterans Affairs, general assistance, foster care payments for an ineligible child, and income used to make court-ordered support payments (SSA, 2014d). If the employment, income, and resources criteria are met, the case proceeds to Step 2. It should be noted that, because of the deeming process, the SSI income eligibility criteria do not necessarily predict the household’s poverty level. After deeming exclusions have been applied, children eligible for SSI may come from households with incomes above 100 percent of the FPL. In 2014, three-quarters of children receiving SSI benefits were in households with incomes below 200 percent of the FPL, without taking into account the income from the SSI benefit (Bailey and Hemmeter, 2014). Step 2: Medically Determinable Impairment, Severity, and Duration In Step 2, the Disability Determination Services examiner evaluates whether an applicant has a “severe medically determinable impairment” as required by the Social Security Act and as defined by statute and in the Code of Federal Regulations (SSA, 2011). If not, the claim is denied. The SSA defines a medically determinable physical or mental impairment as an impairment that results “from anatomical, physiological, or psychological abnormalities which can be shown by medically acceptable clinical and laboratory diagnostic techniques” (SSA, 2013a). Such an impairment must be established by medical evidence that includes symptoms, signs, and 33  The monthly SGA amount for nonblind disabled individuals for 2015 is the amount for 2000 multiplied by the ratio of the national average wage index for 2013 to that for 1998, or if larger the amount for 2014 ($1,070). If the amount so calculated is not a multiple of $10, it is rounded to the nearest multiple of $10 (SSA, n.d.). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 137 laboratory findings (SSA, 2013a). Furthermore, the medical evidence can- not turn on parental communications or observations; instead, it must come from an SSA-approved list of medical sources, which includes licensed phy- sicians and, in the case of speech and language disorders, speech-language pathologists (SSA, 2013a). Information supplied by parents and caregivers is relevant, but by itself is an insufficient basis for a determination of dis- ability. If there is insufficient medical evidence to support a finding of a medically determinable impairment, the claim is denied. Applications also are denied if the applicant’s impairment is not con- sidered severe. The SSA defines a nonsevere impairment as an impairment or combination of impairments that does not “cause more than a mini- mal limitation in the individual’s ability to function in an age-appropriate manner” (SSA, 2014b). Applications are denied as well if the applicant’s impairment is not expected to cause death or has neither lasted 12 months nor can be expected to last for a continuous period of 12 months or more (SSA, 2000). If the Disability Determination Services examiner finds that the claimant has a severe, medically determinable impairment, the claim proceeds to Step 3. Step 3: The Medical Listings In Step 3, the Disability Determination Services examiner performs a medical screen to determine whether the child has one or more severe im- pairments that either “meet” or “medically equal” the criteria in the SSA’s Listing of Impairments (Wixon and Strand, 2013). The relevant definitions are as follows: • Meets a Listing—If the evidence in a case establishes that all of the criteria required by one of the Listings, along with the duration requirement, are met, the claimant’s impairment meets that specific Listing (SSA, 2013b). • Medically equals a Listing—If a claimant’s impairment is not found to meet the exact criteria of a specific Listing, the claimant can still be found eligible if the impairment is at least equal in severity and duration to the criteria for any listed impairment, as established by the relevant evidence in the claimant’s case record (SSA, 2013b). If a child’s impairment “meets” or “medically equals” a Listing, benefits are awarded. Otherwise, the claim proceeds to Step 4. 

138 SPEECH AND LANGUAGE DISORDERS IN CHILDREN Step 4: Functional Equivalence In Step 4, the Disability Determination Services examiner evaluates whether the impairment functionally equals the Listings—that is, whether the child’s impairment is of Listing-level severity, which means it must re- sult in “marked” limitations in two domains of functioning or “extreme” limitation in one domain (Wixon and Strand, 2013). The SSA evaluates functional equivalency from both a qualitative and a quantitative perspec- tive, and the regulations on this point are extensive. From a qualitative perspective, the SSA considers an impairment to be “extreme” if it interferes “very seriously” with a child’s ability to indepen- dently initiate, sustain, or complete age-appropriate activities. The interac- tive and cumulative effects of functional limitations are evaluated using all available evidence. The SSA considers an impairment to be “marked” if it “seriously” interferes with age-appropriate function. Thus, eligibility is de- nied for impairments that do not interfere either very seriously or seriously with age-appropriate functioning. As in the case of impairments that “meet or equal” the Listing for a particular impairment, the evidence on which a functional determination must rest is comprehensive. The evidence includes data and information drawn from a variety of professional sources, includ- ing clinical, educational, and social and rehabilitative programs serving children; parental reports and observations cannot form the sole evidentiary basis for a finding that an impairment is severe based on function. From a quantitative perspective, the SSA considers an impairment to be “extreme” if a child registers a valid score that is at least three standard deviations from the mean on a comprehensive standardized test designed to measure functioning in any one of the six functional domains (see below) and if the child’s day-to-day functioning in domain-related activities is consistent with that score. The SSA considers a child to have a “marked” limitation if the child’s standardized score for each domain falls between two and three standard deviations from the mean, and this score is reflected in the child’s day-to-day functioning. For children under age 3, an extreme limitation is one that causes function at a level typical for one-half of the child’s chronological age, while a marked limitation is one that causes function at a level typical for between one-half and two-thirds of the child’s chronological age. In a sample of 1,000 children, only about 1 would be expected to meet this standard for a extreme limitation; only 2 in 100 would be expected to meet this standard for a marked limitation. These definitions of extreme and marked limitations are comparable to and in some cases more stringent than standards for identifying children aged birth to 3 years eligible for early intervention under IDEA Part C based on developmental delays (U.S. Department of Education, 2011; see also Rosenberg et al., 2013). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 139 On balance, whether they are measured quantitatively or qualitatively, impairments tied to function must be extreme or marked to support a find- ing of SSI eligibility. Furthermore, the core requirement is that the child’s condition must be at least marked and severe. This standard places SSI eligibility criteria on a more limited plane than that used to qualify children for services for children with special health care needs under either IDEA or Title V. Six activity domains  As noted above, when determining functional equiva- lence, the SSA considers a child’s function in six activity domains. These do- mains are broad areas of functioning that encompass activities children can and cannot perform at home, at school, and in the community compared with children of the same age who do not have impairments (IOM, 2010). Information concerning functioning in the six domains is collected from medical sources, parents, teachers, and others who can describe functioning at home, in childcare, at school, and in the community (SSA, 2015a). The SSA also may request a consultative exam if the medical evidence provided is inadequate (SSA, 2015a). The first domain, “acquiring and using information,” refers to how well a child can acquire or learn and then use information (SSA, 2015a). An example of limited functioning in acquiring and using information is having difficulty remembering things learned in school the previous day (SSA, 2015a). The second domain, “attending and completing tasks,” describes how well a child can focus and maintain attention throughout and finish activi- ties (SSA, 2015a). A child with limited functioning in this domain is repeat- edly distracted from activities (SSA, 2015a). The third domain, “interacting and relating with others,” encompasses how well a child can “initiate and sustain emotional connections with others, develop and use language of the community, cooperate with oth- ers, comply with rules, respond to criticism, and respect and take care of possessions of others” (SSA, 2015a). When a child is unable to form close friendships, he or she is limited in interacting and relating with others (SSA, 2015a). The fourth domain, “moving about and manipulating objects,” de- scribes gross and fine motor skills that include a child’s ability to move from one place to another and to move and manipulate things. Difficulty climbing up and down stairs is an example of limitation in this domain (SSA, 2015a). The fifth domain, “caring for yourself,” refers to how well a child can maintain a healthy emotional and physical state by ensuring that physical and emotional wants and needs are met; coping with stress and environ- mental changes; and taking care of his or her health, possessions, and living 

140 SPEECH AND LANGUAGE DISORDERS IN CHILDREN area (SSA, 2015a). A child with limitations in this domain may not dress or bathe him- or herself appropriately when age is taken into account (SSA, 2015a). The sixth domain, “health and physical well-being,” describes the “cumulative physical effects of physical or mental impairments and their associated treatments and therapies on functioning” (SSA, 2015a). A child who has frequent seizures related to his or her impairment will have a limitation in this domain (SSA, 2015a). In this evaluation stage, the rules are replete with age-specific examples that describe language and communication skills, given the significance of speech and language to child development. For example, one of the specific factors the SSA considers is a child’s ability to “develop and use the lan- guage of” the community to which he or she belongs.34 In another example, the SSA identifies the ability to “use words instead of actions to express yourself” in the case of preschool children.35 Difficulty in “communicating with others; e.g., in using verbal and nonverbal skills to express yourself, carrying on a conversation, or in asking others for assistance” is similarly considered evidence when the interaction function is evaluated.36 Marked and extreme limitations  As noted, to functionally equal the Listings, a child’s impairment must result in “marked” limitation in two domains or “extreme” limitation in one domain (SSA, 2014c). When decid- ing whether a child has a marked or extreme limitation, the SSA considers functional limitations due to the child’s impairment and their interactive and cumulative effects (SSA, 2014c). Relevant information in the child’s case record, such as signs, symptoms, laboratory findings, and parental and teacher descriptions of function, are used to determine functioning (SSA, 2014c). Medical evidence such as formal testing also is used to provide de- velopmental and functional information, and the standard scores from the formal tests along with the standard deviations of scores are used together with the information obtained regarding functioning to determine whether a child exhibits marked or extreme limitation in a domain (SSA, 2014c). Marked limitation  When a child has a marked limitation, his or her impairment interferes seriously with the ability to independently initiate, sustain, or complete activities (SSA, 2014c). A marked limitation can be described as “more than moderate” but “less than extreme” (SSA, 2014c). The impairment can affect day-to-day functioning by seriously limiting only one activity, or the impairment’s interactive and cumulative effects can limit 34  20 C.F.R. § 416.926(e). 35  20 C.F.R. § 416.926(e). 36  20 C.F.R. § 416.926(e). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 141 several activities (SSA, 2014c). For children of any age, marked limitation is determined if a valid score on a comprehensive standardized test designed to measure ability or functioning in a domain is two standard deviations or more but less than three standard deviations below the mean (SSA, 2014c). The test should be designed to measure ability or functioning in that par- ticular domain, and the child’s day-to-day functioning in domain-related activities should be consistent with the score (SSA, 2014c). For children who have not yet reached age 3 and cannot be tested, a marked limitation is determined if they function at a level that is more than one-half but still less than two-thirds of that typical for their chronological age (SSA, 2014c). To meet the definition of marked limitation, comprehensive standardized test scores must be between two and three standard deviations below the mean (SSA, 2014c). Extreme limitation  A child is determined to have an extreme limitation when the impairment interferes very seriously with the ability to indepen- dently initiate, sustain, or complete activities (SSA, 2014c). An extreme limitation also is described as “more than marked” (SSA, 2014c). The impairment can affect day-to-day functioning by very seriously limiting only one activity, or its interactive and cumulative effects can limit several activities (SSA, 2014c). As mentioned above, comprehensive standardized test scores are used for determining impairment that can be considered an extreme limitation (SSA, 2014c). A valid score for an extreme limitation is three standard deviations or more below the mean (SSA, 2014c). Children who have not yet attained age 3 are considered to have an extreme limita- tion if functioning at a level one-half of that typical for their chronological age or less (SSA, 2014c). Benefits are awarded if it is found that a child’s im- pairment results in limitations that functionally equal those of the Listings; otherwise, the application for benefits is denied. The Appeals Process A claimant has the right to appeal a determination, decision, or dis- missal after any step of the disability determination process and can present additional evidence to support his or her case or appoint a representative to do so (Morton, 2014). The appeals process encompasses three levels of administrative review within the SSA before the case can be appealed to the U.S. court system (Morton, 2014). These three levels are reconsideration, an evidentiary hearing before an administrative law judge, and an appeal to a special appeals board. 

142 SPEECH AND LANGUAGE DISORDERS IN CHILDREN Suspensions and Terminations A recipient’s benefit payments are suspended or terminated when he or she is no longer eligible for benefits. Suspension of benefit payments occurs when a recipient is found to no longer be eligible for a number of reasons, including having excess income or resources, whereabouts being unknown, residing in a Medicaid facility or public institution, or no longer being disabled. Suspensions can last up to 12 months after suspension. Payments can be reinstated if, within 12 months after a recipient’s payments are suspended, the recipient’s circumstances revert to being consistent with the eligibility criteria. Termination of SSI benefits occurs when a recipi- ent is ineligible for 12 consecutive months; a terminated recipient cannot receive disability benefit payments without submitting a new application. Termination can occur when a recipient dies or after 12 consecutive months of suspension. Continuing Disability Reviews Continuing disability reviews are performed periodically to determine whether SSI recipients (including children) continue to qualify for benefits (SSA, 1986). The frequency of such reviews depends on whether the im- pairment is expected to improve and whether the disability is considered permanent (SSA, 2006a). For impairments that are expected to improve, continuing disability reviews are required at 6- to 18-month intervals fol- lowing the most recent decision (SSA, 2006a). When a disability is not con- sidered permanent but a medical improvement in the impairment cannot be predicted, a continuing disability review should be conducted at least once every 3 years (SSA, 2006a). When a disability is considered permanent, a continuing disability review should be conducted no less than once every 7 years and no more than once every 5 years (SSA, 2006a). The U.S. Government Accountability Office (GAO, 2012) has reported that, because of resource constraints and competing workload priorities, SSA has not performed continuing disability reviews at these prescribed intervals. The GAO found that the number of reviews had decreased by 70 percent between 2000 and 2011 and that as of August 1, 2011, the SSA was experiencing a backlog of about 435,000 child SSI recipients with mental disorders who had not yet received a prescribed continuing disability review. For many of these children, medical improvement was neither expected nor possible. In response to these GAO findings, the SSA noted that it had conducted fewer reviews for children than required by law because of funding constraints and competing demands for reviews for adults (GAO, 2012). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 143 TABLE 4-1  Childhood Listing Impairment Codes for Speech and Language Disorders Listing Diagnostic Category Label Impairment Code 112.12 Speech and Language Impairment 3153 111.09 Loss of Voice (Communication Impairment) 7840 NOTE: Impairment codes are based on the International Classification of Diseases, Ninth Revision, Clinical Modification (SSA, 2013c). APPLICATION OF THE SSI DISABILITY CRITERIA TO CHILDREN WITH SPEECH AND LANGUAGE DISORDERS In addition to understanding the overall SSI adjudication process, it is important to understand how specific disorders are evaluated. This is especially true for speech and language disorders in children for which there are impairment codes but no specific Listings. This section provides greater detail on how children with speech and language impairments are determined to be medically eligible for SSI. Eligibility for SSI for Children with a Speech or a Language Disorder The impairment codes for childhood speech and language disorders used for the SSA’s disability evaluation are “speech and language impair- ment” (3153)37 and “loss of voice” (communication impairment) (7840) (see Table 4-1).38 These codes are included in Part B of the Listing of Impairments, which contains additional medical criteria that apply only to the evaluation of impairments in children under age 18. As noted earlier, the criteria in the Listings are incorporated into the SSA’s multistep evaluation process. From this point forward, when the committee refers to children with speech and language disorders within the SSI program, it is referring to children with one of these two primary impairments. Evaluating Speech and Language Disorders in Children The process for identifying children with speech and language disorders who are eligible for SSI benefits is consistent with the multidimensional, 37  SSI impairment codes are based on the International Classification of Diseases, Ninth Revision, Clinical Modification (SSA, 2013c). 38  The SSA added the impairment code 3153 for speech and language impairment in mid- to late 1994 (personal communication, J. Firmin, Social Security Administration, June 24, 2015). The SSA has used impairment code 7840 for loss of voice since the 1980s (personal communication, J. Firmin, Social Security Administration, June 24, 2015). 

144 SPEECH AND LANGUAGE DISORDERS IN CHILDREN multimethod, and multisource perspective evident in current professional practices. Specifically, as described above, children are assessed across mul- tiple domains to determine the presence and severity of impairments in any individual areas, as well as the combined and interacting effects of these impairments on day-to-day functioning. Likewise, children’s case records include multiple forms of evidence concerning impairment and function- ing (e.g., test scores, classroom records, progress in intervention), with no single piece of evidence being considered in isolation. Finally, information from parents, caregivers, and others with direct knowledge of children’s daily functioning in age-appropriate environments and activities (e.g., Child Function Report Forms [SSA 3375-3379], Teacher Questionnaire Form [SSA 5565]) also is used to ensure that formal and criterion-referenced scores in the case record are consistent with levels of functioning in typical settings. The descriptions of “marked” and “extreme” limitations that are used to identify impairments sufficiently severe to functionally equal the Listings also are consistent with professional practice in interpreting norm- and criterion-referenced tests of speech and language. The following subsections provide individual case examples as well as information gleaned from a review of a random sample of case files to illustrate the types of evidence used to determine eligibility for SSI and the characteristics of children who are allowed or denied eligibility on the basis of speech and language disorders. Case Examples of Speech and Language Impairments Although a number of medical Listings and impairment codes concern conditions that are strongly associated with speech and/or language impair- ments (such as autism and attention deficit hyperactivity disorder), speech and language delays often occur in the absence of known medical or other causes (see Chapter 2). According to the SSA, approximately 80 percent of allowed cases involving a primary impairment of speech and language impairment (code 3153) do not meet or medically equal a Listing, but are allowed using functional equivalence rules.39 These cases include speech and language impairments with both known causes and unknown causes. As discussed earlier in this chapter, a functional equivalence determina- tion requires extensive documentation, using various types of evidence, of a child’s abilities across six functional domains and relative to the child’s chronological age. A child must then exhibit speech and language impair- ments that are two to three standard deviations off the norm for a child of that age. The following are case examples from the SSA for primary impairment 39  20 C.F.R. § 416.926(a). 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 145 code 3153, speech and language impairment. These examples illustrate the types of evidence used to determine eligibility and the characteristics of children who are allowed or denied eligibility. The SSA provided two case examples of 4-year-old children with primary speech impairments who applied for SSI. One child was found to meet the functional equivalence standard and was awarded benefits; the other did not meet the standard and was denied benefits. Allowed Case: 4-Year-Old Male This child’s file included clinical evaluation records related to occupa- tional therapy, physical therapy, speech and language therapy, and psycho- logical testing, as well as an early-intervention individual family service plan prepared pursuant to IDEA concerning the child’s developmental, fine motor, expressive language, and speech delays. However, only the evi- dence regarding his delayed speech met the functional equivalence standard. Specifically, a speech-language pathology evaluation noted severe speech delays and stated that the child’s speech was intelligible to others only 25 percent of the time, despite the fact that by age 4, speech intelligibility at or near 100 percent is expected. Consistent with this evidence, the child’s caregiver, who completed Form SSA-3377, described abnormal speech pat- terns and noted that despite being with him all day, the caregiver still found his speech very difficult to understand. As noted in the age-specific examples for the domain of “interacting and relating with others,” children aged 3-6 are expected to “use words instead of actions to express yourself,” to “re- late to caregivers with increasing independence, choose your own friends, and play cooperatively with other children . . . without continual adult supervision,” and “initiate and participate in conversations . . . speaking clearly enough that both familiar and unfamiliar listeners can understand what you say most of the time” (SSA, 2015a). The subject child’s inabil- ity to speak intelligibly represented an extreme limitation in this domain (see Table 4-2); he was given a primary diagnosis of speech and language TABLE 4-2  Allowed Case: Functional Domain Summary Domain Rating Acquiring and using information Less than marked limitation Attending and completing tasks Less than marked limitation Interacting and relating with others Extreme limitation Moving and manipulating objects No limitation Caring for self Less than marked limitation Health and physical well-being No limitation SOURCE: Unpublished dataset provided by the Social Security Administration. 

146 SPEECH AND LANGUAGE DISORDERS IN CHILDREN impairment (code 3153), with medical evidence insufficient to establish a secondary diagnosis (code 6490). Denied Case: 4-Year-Old Female This case file contained several types of evidence regarding the child’s speech, including clinical reports and results of a standardized speech ar- ticulation test. A speech-language pathologist reported that the child was receiving one session of speech therapy per week. At the time of the report, the child’s speech was intelligible 75 percent of the time, with speech er- rors remaining in only a few sounds. In addition, the child was reported to have obtained a standard score of 112 (slightly above the expected mean of 100) on a standardized speech articulation test approximately 3 months earlier. The child’s language, speech fluency, and voice characteristics were described as age-appropriate, and her speech impairment was described as not interfering with her academic progress. Other evidence in the file was inconsistent with the results of a tele- phone interview with the child’s mother, who reported that the child could rarely be understood by anyone other than the mother because of a “bad stutter.” The mother also indicated that others often asked the child to repeat herself because they could not understand her speech. In this case, the child’s speech deficits, although sufficiently severe to warrant treatment, were not rated as causing an extreme functional limita- tion in the domain of “interacting and relating with others” relative to peers her age (see Table 4-3). She was assigned a primary impairment of speech and language impairment (code 3153), with medical evidence insufficient to establish a secondary diagnosis (code 6490), and her claim was denied. TABLE 4-3  Denied Case: Functional Domain Summary Domain Rating Acquiring and using information No limitation Attending and completing tasks No limitation Interacting and relating with others Less than marked limitation Moving and manipulating objects No limitation Caring for self No limitation Health and physical well-being No limitation SOURCE: Unpublished dataset provided by the Social Security Administration. 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 147 Summary of Review of the SSA Case Files As part of its charge, the committee was asked to “identify the kinds of care documented or reported to be received” by children with speech and language disorders who are enrolled in the SSI program. To shed light on this question, the committee reviewed a random sample of case files for children who receive SSI benefits based on primary speech and language disorders.40 The results of this review provide additional insight into the underlying health characteristics of such children, as well as the types of evidence the SSA considers as part of the disability determination process. Appendix C describes the methods used to select the 152 cases reviewed by the committee, all of which contain an initial allowance based on a primary speech and language impairment (code 3153) and any second- ary impairment code. Because the review involved children determined to be entitled to SSI benefits, all of the cases met the SSI financial eligibility criteria, described earlier in this chapter. According to the SSA, 20 percent of children with speech and language disorders who receive SSI benefits are initially allowed because their condition “meets or medically equals” a Listing, while 80 percent are allowed because their condition “functionally equals” the Listings. The committee thus asked the SSA to select case files such that 20 percent were allowed on the basis of meeting or equaling the Listings and the remaining 80 percent on the basis of functional equivalence to the Listings. Finally, the group of files to be reviewed was further limited to case files for individuals under age 18. Although the case files reviewed cannot be considered representative of the entire SSI child population with speech and language disorders, the review provides evidence that is consis- tent with evidence from other sources considered by the committee. The median age of the children in the sample of case files at the time of their application was 4 years, and the majority of children were between 6 months and 7 years of age (n = 134).41 The young age at which the chil- dren in this sample applied for SSI benefits is consistent with the evidence presented in Chapter 2 regarding the age at which speech and language disorders are typically identified. The sample of case files also included more boys than girls (108 and 44, respectively). As noted in Chapters 2 and 5, this breakdown is consistent with epidemiologic reports on the sex distribution of children with speech and language disorders. The case review also offered insight into the characteristics of the children in this sample. For example, the impairment code for speech and language disorders includes multiple underlying conditions: articulation/ phonological disorders, language disorders, voice disorders, and fluency 40  Cases were randomly selected by a manual process whereby the SSA staff selected records that are approximately equally distributed based on Social Security numbers. 41  Two of the case files were excluded because of errors in the date of birth listed. 

148 SPEECH AND LANGUAGE DISORDERS IN CHILDREN disorder (stuttering). Language disorders were pervasive in the sample; 145 of the 152 cases exhibited these problems. Many of the children with language disorders (n = 78) also had articulation/phonology disorders. The committee observed a range of secondary impairment codes within the sample of case files. Among the children whose disorder met or equaled a Listing, all were assigned a secondary impairment code; among those whose eligibility was determined on the basis of functional equivalence to a Listing, the majority were assigned a secondary impairment code (n = 124). Figure 4-3 shows that these secondary impairment codes were primarily learning disorder (n = 21), “autistic disorder” (n = 19), intellectual disabil- ity (n = 11), and attention deficit hyperactivity disorder (n = 11). Figure 4-3 thus shows that the most common secondary impairment codes recorded in the sample of case files are for those conditions that, as noted in Chapter 2, 30 25 20 Case Files 15 10 5 0 Secondary Impairments FIGURE 4-3 Secondary impairments for children with the primary impairment code for speech and language disorders within the random sample of cases reviewed. NOTES: “Other” encompasses those conditions with only one case, such as “other congenital anomalies” and “other cerebral degenerations.” The sample size is 152 case files. ADD = attention deficit disorder; ADHD = attention deficit hyperactivity disorder. SOURCE: Unpublished dataset provided by the Social Security Administration. 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 149 80 70 60 Extreme Case Files 50 Marked 40 Less than Marked 30 No LimitaƟon 20 Not Evaluated 10 0 A Functional Domain FIGURE 4-4 Functional limitations documented in case files reviewed, by func- tional domain. NOTE: The sample size is 152 case files. SOURCE: Unpublished dataset provided by the Social Security Administration. frequently co-occur within the general population of children with speech and language disorders. As discussed earlier in this chapter, age-appropriate functioning across six domains is central to an SSI child eligibility determination based on functional status. All but two of the case files in the random sample re- Figure 4-4 viewed included a function report form completed by a parent or guardian. Figure 4-4 shows each functional domain, with the documented levels of severity within each domain. The committee observed that children in the sample of case files had extreme or marked functional limitations in the domains most likely to be affected by a severe inability to communicate, including “acquiring and using information” and “interacting and relating to others.” By contrast, in the functional domains that are associated with physical health and functioning, the children in the sample showed no limi- tation or were not evaluated. Among the children in the sample whose eli- gibility was based on functional equivalency, 98 had an extreme or marked functional limitation in the domain of “acquiring and using information,” while 88 had an extreme or a marked functional limitation in the domain of “interacting and relating with others.” 

150 SPEECH AND LANGUAGE DISORDERS IN CHILDREN The case review also shed light on the types of evidence used by the SSA in making eligibility determinations. Because the evidence is derived overwhelmingly from diagnostic, evaluation, and treatment information, the cases also helped the committee understand the types of treatment that the children in the sample were documented or reported as having received and the extent to which such diagnostic and evaluation services reflect the professional standards described in Chapters 2 and 3. For example, Chapter 2 describes the standardized tests typically used to diagnose speech and language disorders in children. Of the cases in the sample reviewed, 143 included evidence of standardized testing. Three case files that lacked information regarding standardized testing included diagnostic evidence derived from nonstandardized ratings and measurements, as well as spon- taneous language samples, evidence that is often used to make diagnoses of speech and language disorders in children. Finally, nearly all of the case files in the sample included information from speech-language pathologists regarding the child’s speech and language status, and more than half con- tained developmental screening reports from a pediatrician. In all, only two of all of the cases reviewed lacked the type of specialized, objective clinical and evaluative data one would expect to find in a case based on functional equivalency. As discussed in Chapter 3, standard practice for children with extreme or marked speech and language disorders is to provide some form of speech and/or language treatment to reduce severity and improve functioning. Nearly two-thirds of the case files in the sample included evidence of IDEA participation, either through an Individualized Family Services Plan, in the case of children from birth to 3 years of age, or an Individualized Education Plan, in the case of children ages 3 to 21. The presence of an IDEA-related case document in the file indicates that at the time of the initial application, the majority of the children in the sample already were receiving IDEA services. Furthermore, as Table 4-4 shows, the majority of the children in TABLE 4-4  Relationship Between Receipt of Speech-Language Therapy and IDEA Services Documented in the Case Files Reviewed Individualized Education Plan or Individual Family Service Plan in File Speech-Language Therapy Documented in File Yes No Yes 68 33 Uncertain 14 13 No 12 12 NOTE: The sample size is 152 case files. SOURCE: Unpublished dataset provided by the Social Security Administration. 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 151 the sample already were receiving at least some speech-language therapy; among children already receiving speech-language therapy, most were re- ceiving IDEA services more generally. Taken together, the information provided by the case file review sug- gests that the sample of children with speech and language disorders was similar in age and gender distribution to children in the general popula- tion. Children in the sample could also be expected to experience marked or extreme functional limitations of the type that would be expected to arise from severe speech and language disorders. Secondary impairments, when documented, are consistent with secondary impairments among the general population of children with speech and language disorders. Finally, evidence of evaluation and treatment documented or reported to have been received in the case files is consistent with professional standards. While this information cannot be considered representative of, or generalized to, the entire SSI child disability population with primary speech and language disorders, it does provide additional insight into children who receive SSI benefits for these disorders. THE SSI DETERMINATION PROCESS AND THE NUMBER OF CHILD SSI RECIPIENTS The SSI determination process evaluates the financial and medical eligibility of children who apply for SSI disability benefits. The number of participants and changes in the proportion of children with disabilities who participate in the program are a direct product of this process. For speech and language disorders, program participation comprises the number of children with these disorders who apply for benefits and are subsequently allowed by the SSI determination process. Figure 4-5 conceptualizes the process and context of SSI program par- ticipation. As noted previously, an allowance is a finding that a child who applied for disability benefits is eligible based on both the financial and the disability criteria. Therefore, the total number of allowances is the total number of new cases within any given period of time. Because nearly all allowances result in an applicant’s becoming an SSI benefit recipient, the term “recipients” denotes the current number of children receiving SSI ben- efits. Finally, once a child becomes an SSI recipient, he or she will continue to receive benefits until eligibility is suspended or terminated. Therefore, the number of child SSI recipients at any given point in time is a function of the number of allowances, terminations, suspensions, and reentries of suspended individuals. Generally, the number of child SSI beneficiaries includes children who presently meet the medical eligibility criteria, whose families currently meet the financial eligibility criteria, and who have applied for benefits. However, 

152 SPEECH AND LANGUAGE DISORDERS IN CHILDREN FIGURE 4-5  Relationship of allowances, recipients, terminations, and suspensions in the SSI child disability program. some recipients may no longer meet the medical eligibility criteria, but have not (yet) been terminated because they have not been reevaluated. The total number of child SSI recipients fluctuates depending on the number of allowances, terminations, suspensions, and suspension reentries over time. Overall growth in the population of children would be expected to contribute some growth in the program as well. Based on the statutory requirements for both duration and condition severity, one would expect the number of children allowed (found eligible for the program) in 1 year to exceed the number who exited the program (excluding age-18 transitions out of the SSI child disability program). One would also expect allowances to be affected by macroeconomic conditions. During a period of economic expansion, as family income increases and joblessness decreases, one would 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 153 FIGURE 4-6  The number of children receiving SSI for speech and language disor- ders (which includes impairment codes 3153 and 7840) is a small subpopulation of children in the general U.S. population. NOTES: FPL = federal poverty level; SSI = Supplemental Security Income. All data are from 2013. Scale = 1 symbol to 100,000 children. The Current Population Sur- vey table creator was used to generate numbers of children in families with incomes below 200 percent of the federal poverty level. Parameters used to generate the num- bers include get count of: persons in poverty universe (everyone except unrelated individuals under 15); years: 2004 to 2013; census 2010 weights; row variable: age; column variable: income-to-poverty ratio; and customized formatting: income-to- poverty ratio cutoff of 200 percent. These populations are not mutually exclusive. SOURCES: SSA, 2014e; U.S. Census Bureau, 2014, 2015; unpublished dataset provided by the Social Security Administration. 

154 SPEECH AND LANGUAGE DISORDERS IN CHILDREN expect fewer children to meet the SSA’s financial eligibility criteria. By contrast, during periods of economic downturn—for example, during the recent U.S. recession—more children would meet the program’s financial eligibility criteria as a result of relatively higher unemployment. Figure 4-6 shows how SSI recipients with speech and language disor- ders are a small subpopulation of all U.S. children. Approximately 0.31 percent42 of U.S. children receive SSI benefits for speech and language disorders (U.S. Census Bureau, 2014). In addition to changes in macroeconomic conditions, the expanded use of diagnostic and treatment services has helped identify more children with disabilities (Houtrow et al., 2014). Efforts to raise awareness of developmental disabilities may increase the number of children who are identified as medically eligible for SSI as well. For example, the SSA Office of Disability supported an interdisciplinary case assessment project with the Association of University Centers on Disabilities to train Disability Determination Services adjudicators (SSA, 2002). According to the case assessment findings from the first 3 years (through 2001), the collaboration helped adjudicators ascertain previously unidentified language issues, which affected whether children, across all age categories, qualified for initial or continued benefits (SSA, 2002). Thus, better identification of speech and language disorders may increase the number of children who are identified as medically eligible for SSI. FINDINGS AND CONCLUSIONS This chapter has reviewed the SSI program for children, how it has changed over time, and how those changes have shaped the population of children receiving SSI benefits for speech and language disorders. The com- mittee’s review of the relevant statutes and regulations was supplemented by individual case examples, as well as a review of a random sample of SSI case files. Based on its review of the best available evidence, the committee formulated the following findings and conclusions. Findings 4-1. To qualify for the SSI program, children and their families must meet a number of eligibility standards that are designed to restrict the program to children with severe conditions and those whose families have low incomes and very limited resources. 42 The percentage 0.31 was calculated by dividing total child recipients of SSI for speech and language disorders by the total population of U.S. children in 2013. 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 155 4-2. The SSI program is designed to assist the families of children whose conditions are severe and for whom the persistence of severity is expected, as measured by duration over time. 4-3. An analysis of the impact of SSI revealed that children’s SSI benefits raised family income above the FPL by 26.4 percent for families with child SSI beneficiaries. However, 58.0 percent of families receiving children’s SSI benefits continued to have income below 150 percent of the FPL, even after accounting for receipt of the benefit. 4-4. More children receive services under IDEA and the Title V Program for Children with Special Health Care Needs—which are designed to identify children with substantial disability-re- lated needs for health and educational services—than receive SSI. Neither of these programs uses a “marked or extreme” standard for disability, and neither has financial eligibility regulations. 4-5. To qualify for SSI benefits, children must meet a complex and de- tailed set of financial-related, work-related, and disability-related eligibility criteria. The evidence required to document severity of disability is extensive and rests on clinical and educational data and information, as well as information gleaned from profession- als and standardized testing. Parental observations and reports alone are an insufficient basis for a finding of disability. 4-6. The SSA’s standard for marked or extreme impairment requires that children display a degree of disability that places them at least two and three standard deviations, respectively, below nor- mal age-appropriate functional levels. 4-7. To determine the severity of speech and language disorders in children, the SSA employs the results of professionally adminis- tered assessments and also takes into account other clinical evi- dence that would be consistent with severe speech and language disorders. Conclusions 4-1. SSI is a safety net for severely disabled children whose conditions are expected to persist over time and who live in low-income, resource-limited families. 4-2. Children of families with low incomes are more likely than the general population to have disabilities, including speech and lan- guage disorders. The SSI program is designed to award benefits to the most severely impaired children from low-income, resource- limited families. Currently, 0.31 percent of U.S. children receive SSI benefits for speech and language disorders. 

156 SPEECH AND LANGUAGE DISORDERS IN CHILDREN 4-3. The disability standard for SSI (at least two to three standard de- viations below normal age-appropriate functional levels) places a child far below his or her same-age peers in function and is well beyond the severity of a clinical diagnosis for speech and language disorders. 4-4. SSI benefits have the effect of lifting some children and their fami- lies out of poverty. REFERENCES Bailey, M. S., and J. Hemmeter. 2014. Characteristics of noninstitutionalized DI and SSI program participants, 2010 update. www.ssa.gov/policy/docs/rsnotes/rsn2014-02.html (accessed July 10, 2015). Boushey, H., C. Brocht, B. Gundersen, and J. Bernstein. 2001. Hardships in America: The real story of working families. Washington, DC: Economic Policy Institute. Coe, N. B., and M. S. Rutledge. 2013. What is the long-term impact of Zebley on adult and child outcomes? Center for Retirement Research and Boston College Working Paper No. 2013-3. http://crr.bc.edu/wp-content/uploads/2013/01/wp_2013-3-508.pdf (accessed July 7, 2015). Fremstad, S., and R. Vallas. 2012. Supplemental Security Income for children with disabilities. Washington, DC: National Academy of Social Insurance. GAO (U.S. Government Accountability Office). 2012. Supplemental Security Income: Better management oversight needed for children’s benefits. GAO-12-497. http://purl.fdlp.gov/ GPO/gpo25551 (accessed July 7, 2015). HHS (U.S. Department of Health and Human Services). 2015a. 2015 poverty guidelines. http://aspe.hhs.gov/2015-poverty-guidelines (accessed September 14, 2015). HHS. 2015b. Prior HHS poverty guidelines and Federal Register references. http://aspe.hhs. gov/prior-hhs-poverty-guidelines-and-federal-register-references (accessed September 1, 2015). HHS, HRSA (Health Resources and Services Administration), and MCHB (Maternal and Child Health Bureau). 2013. The National Survey of Children with Special Health Care Needs chartbook 2009-2010. Rockville, MD: HHS. Houtrow, A. J., K. Larson, L. M. Olson, P. W. Newacheck, and N. Halfon. 2014. Changing trends of childhood disability, 2001-2011. Pediatrics 134(3):530-538. IOM (Institute of Medicine). 2010. HIV and disability: Updating the social security listings. Washington, DC: The National Academies Press. McPherson, M., P. Arango, H. Fox, C. Lauver, M. McManus, P. Newacheck, J. Perrin, J. Shonkoff, and B. Strickland. 1998. A new definition of children with special health care needs. Pediatrics 102(1):137-140. Morton, W. R. 2014. Primer on disability benefits: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). http://fas.org/sgp/crs/misc/RL32279.pdf (ac- cessed August 31, 2015). NASEM (National Academies of Sciences, Engineering, and Medicine). 2015. Mental disorders and disabilities among low-income children. Washington, DC: The National Academies Press. Rogowski, J., L. Karoly, J. Klerman, M. Inkelas, M. Rowe, and R. Hirscher. 2002. Final report for policy evaluation of the effect of the 1996 welfare reform legislation on SSI benefits for disabled children. Santa Monica, CA: RAND. 

SSI FOR CHILDREN WITH SPEECH AND LANGUAGE DISORDERS 157 Rosenberg, S. A., C. C. Robinson, E. F. Shaw, and M. C. Ellison. 2013. Part C early interven- tion for infants and toddlers: Percentage eligible versus served. Pediatrics 131(1):38-46. SSA (Social Security Administration). 1986. Code of Federal Regulations 416.989: We may conduct a review to find out whether you continue to be disabled. www.socialsecurity. gov/OP_Home/cfr20/416/416-0989.htm (accessed August 15, 2014). SSA. 2000. Code of Federal Regulations 416.906: Basic definition of disability for chil- dren. www.socialsecurity.gov/OP_Home/cfr20/416/416-0906.htm (accessed September 1, 2015). SSA. 2002. SSA/AUCD Case Assessment project: Findings from first three years (1998-2001). Disability Determinations Services administrators’ letter no. 596. Silver Spring, MD: Association of University Centers on Disabilities. http://www.aucd.org/template/index. cfm (accessed November 10, 2015). SSA. 2006a. Code of Federal Regulations 416.990: When and how often we will conduct a continuing disability review. www.socialsecurity.gov/OP_Home/cfr20/416/416-0990.htm (accessed August 15, 2014). SSA. 2006b. Trends in the Social Security and Supplemental Security Income disability pro- grams. Publication no. 13-11831. Washington, DC: SSA. SSA. 2007. Code of Federal Regulations 416.903: Who makes disability and blindness deter- minations. www.socialsecurity.gov/OP_Home/cfr20/416/416-0903.htm (accessed August 15, 2014). SSA. 2011. Code of Federal Regulations 416.924: How we determine disability for children. www.socialsecurity.gov/OP_Home/cfr20/416/416-0924.htm (accessed August 15, 2014). SSA. 2013a. DI 25205.005: Evidence of a medically determinable impairment. https://secure. ssa.gov/poms.nsf/lnx/0425205005 (accessed January 30, 2015). SSA. 2013b. POMS DI 22001.020: Impairment(s) meets or medically equals a listing. https:// secure.ssa.gov/poms.nsf/lnx/0422001020 (accessed July 7, 2015). SSA. 2013c. SSI annual statistical report, 2013. www.ssa.gov/policy/docs/statcomps/ssi_ asr/2013/glossary.html (accessed November 16, 2015). SSA. 2014a. Code of Federal Regulations 416.972: What we mean by substantial gainful activity. www.ssa.gov/OP_Home/cfr20/416/416-0972.htm (accessed August 15, 2014). SSA. 2014b. DI 26510.045: Completing item 22 (regulation basis code) on the SSA-831. https://secure.ssa.gov/poms.nsf/lnx/0426510045 (accessed February 2, 2015). SSA. 2014c. Program operations manual system (POMS): DI 25225.020: How we define “marked” and “extreme” limitations (Section 416.926a(e)). https://secure.ssa.gov/poms. nsf/lnx/0425225020 (accessed December 30, 2014). SSA. 2014d. Spotlight on deeming parental income and resources—2014 edition. www. socialsecurity.gov/ssi/spotlights/spot-deeming.htm (accessed December 29, 2014). SSA. 2014e. SSI monthly statistics: Table 2: SSI federally administered payments recipients by eligibility category and age, 2004-2013. www.ssa.gov/policy/docs/statcomps/ssi_monthly/ index.html (accessed May 8, 2015). SSA. 2015a. Code of Federal Regulations 416.926a: Functional equivalence for children. www.ssa.gov/OP_Home/cfr20/416/416-0926a.htm (accessed February 2, 2015). SSA. 2015b. SSI monthly statistics: Table 2: Recipients, by eligibility category and age, July 2014-July 2015. http://www.ssa.gov/policy/docs/statcomps/ssi_monthly/2015-07/table02. html (accessed September 17, 2015). SSA. n.d. Determinations of substantial gainful activity (SGA). www.socialsecurity.gov/oact/ cola/sgadet.html (accessed August 11, 2015). Tambornino, J., G. Crouse, and P. Winston. 2015. National trends in the child SSI program. http://aspe.hhs.gov/hsp/15/ChildSSI/rb_ChildSSI.pdf (accessed April 21, 2015). 

158 SPEECH AND LANGUAGE DISORDERS IN CHILDREN U.S. Census Bureau. 2014. Total population by child and adult populations. http://datacenter. kidscount.org/data/tables/99-total-population-by-child-and-adult-populations?loc=1& loct=1#detailed/1/any/false/35,18,17,16,15/39,41/416,417 (accessed November 14, 2014). U.S. Census Bureau. 2015. CPS table creator. www.census.gov/cps/data/cpstablecrea tor.html (accessed July 13, 2015). U.S. Department of Education. 2011. Early intervention program for infants and toddlers with disabilities: Assistance to states for the education of children with disabilities. Final rule and proposed rule 34 CFR Part 303. Federal Register 76:188. U.S. Department of Education. 2015. Children and youth with disabilities. http://nces.ed.gov/ programs/coe/indicator_cgg.asp (accessed September 2, 2015). U.S. House of Representatives. 1971. Social Security Amendments of 1971: Report of the Ways and Means Committee on H.R. 1. H. Report No. 92-251, pp. 146-148. Wixon, B., and A. Strand. 2013. Identifying SSA’s sequential disability determination steps using administrative data. Research and statistics note no. 2013-01. http://www.ssa.gov/ policy/docs/rsnotes/rsn2013-01.html (accessed July 7, 2015).