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

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6 Overall Conclusions This report has two ultimate goals: (1) to synthesize what is known about trends in speech and language disorders in children in the general population and in the Supplemental Security Income (SSI) child disability population, and (2) to document the current state of knowledge regarding identification and treatment of speech and language disorders in children and levels of impairment associated with these conditions. As noted in each of the preceding chapters, the committee drew upon the existing literature and other relevant sources of information to formulate its findings and conclusions. The committee was not tasked with providing recommenda- tions to the Social Security Administration (SSA). At the same time, the committee’s findings and conclusions underscore potential directions and opportunities—for policy makers, and professionals in relevant fields of research and practice—related to the identification and treatment of speech and language disorders in children. In addition, the committee’s findings and conclusions could be used to inform eligibility criteria and ongoing monitoring of children with speech and language disorders within the SSI program. Finally, the committee’s review of the literature and multiple sources of data provides insight into current data collection efforts related to children with speech and language disorders. The committee’s findings and conclusions in this area, in particular, offer significant opportunities for the SSA, for researchers, and for individuals who provide care for children with these disorders. 207 

208 SPEECH AND LANGUAGE DISORDERS IN CHILDREN OVERALL CONCLUSIONS Chapters 2 through 5 of this report each end with a list of findings and conclusions related to the topics examined within the respective chapters. Collectively, these findings and conclusions address the objectives, goals, and activities specified in the committee’s statement of task (see Box 1-1 in Chapter 1). The findings are statements of the evidence; the conclusions are inferences, interpretations, or generalizations drawn from the evidence and supported by the committee’s findings. (A complete list of the commit- tee’s findings and conclusions, by chapter, is presented later in this chapter.) From this more extensive set of findings and conclusions, the committee drew seven overall conclusions. This final chapter highlights supporting evidence and examples included in the report for each of these overall con- clusions. The chapter ends with the committee’s reflections on how its work can contribute to advancing understanding of and improving outcomes for children with severe speech and language disorders. Impact of Severe Speech and Language Disorders As noted in Chapter 2, severe speech and language disorders in children are associated with significant impairment in functioning. Children with severe speech and language disorders—those whose functioning is consid- ered two to three standard deviations from the norm—may lack the ability to communicate effectively. The committee found that these disorders can have a lasting and profound impact on the children and families they affect. Specifically, the committee concluded that 1. Severe speech and language disorders in children are conditions that interfere with communication and learning and represent seri- ous lifelong threats to social, emotional, educational, and employ- ment outcomes. Severe disruptions in speech or language acquisition have both direct and indirect consequences for child and adolescent development, not only in communication but also in associated abilities such as reading and academic achievement that depend on speech and language skills. In a 15- year follow-up study of children with speech and language disorders, for example, more than half (52 percent) of the children initially identified with speech and language disorders had residual learning disabilities and poor academic achievement later in life (King, 1982). Research has shown that the consequences of speech and language disorders extend beyond commu- nication and learning. For example, a longitudinal study of children with severe language disorders found that in their mid-30s, these individuals 

OVERALL CONCLUSIONS 209 experienced poor social adaptation, prolonged unemployment, and few close social relationships (Clegg et al., 2005). Finally, as noted in Chapter 3, the functional requirements for language and communication increase continually throughout childhood. For chil- dren with moderate to severe speech and language disorders, these require- ments often outpace their development. Thus, even if children with such disorders make some progress from growth and with treatment, the gap between their abilities and functional expectations widens. Prevalence and Comorbidity The committee was asked to identify past and current trends in the prevalence of speech and language disorders in the general U.S. population under age 18. As a first step to this end, the committee sought to arrive at a current estimate of the overall prevalence of speech and language disorders among children in the United States. In addition, the committee was asked to identify common comorbidities (or co-occurring conditions) of child- hood speech and language disorders. To do so, the committee consulted numerous sources of data, including clinical data from small treatment studies, population-based data from large national surveys, and administra- tive data from large federal programs. (See Chapter 5 and Appendix B for detailed descriptions of these data sources.) From this review, the committee concluded that 2. Speech and language disorders affect between 3 and 16 percent of U.S. children. Approximately 40 percent of children with speech and language disorders in nationally representative studies have se- rious comorbidities such as intellectual disabilities, autism spectrum disorder, and other neurodevelopmental and behavioral disorders. This range is based on prevalence estimates of speech and language disorders from peer-reviewed studies of U.S. children (between 3.8 and 15.6 percent) and from three national surveys (between 3.2 percent and 7.7 percent). As noted in Chapter 5, the data available regarding the prevalence of childhood speech and language disorders within the general population are limited in several ways. In particular, the sources of data considered by the committee vary markedly in how speech and language impairments are identified, the level of severity documented, the reporting sources, and the populations within the dataset. For example, many of the sources of data include information reported by a parent or caregiver but include no cor- roborating information from clinical assessment. The few but varied data collection strategies used to estimate the prevalence of speech and language disorders in children leave room for 

210 SPEECH AND LANGUAGE DISORDERS IN CHILDREN both undercounts and overcounts. For example, conditions that commonly co-occur with speech and language disorders, such as autism spectrum dis- order and attention deficit hyperactivity disorder, may initially be identified as speech and language disorders, thereby inflating the number of speech and language disorders reported. Conversely, speech and language disorders may be included in other reported categories, such as “development delays” or “multiple disabilities,” or reported as secondary impairments, thereby effectively deflating the number of speech and language disorders reported. Although the committee encountered challenges, it found sufficient evidence to estimate that 3 to 16 percent of the general population of children from birth to through age 21 experience problems with speech or language.1 Specifically, studies on childhood speech sound disorders show overall prevalence rates ranging from 2 to 13 percent (Campbell et al., 2003; Eadie et al., 2015; Shriberg et al., 1999). Research on childhood lan- guage disorders shows overall prevalence rates between 6 and 15 percent, depending on age (Law et al., 2000; McLeod and Harrison, 2009). And one population-based study of specific language impairment found a prevalence rate of 7.4 percent among children in kindergarten (Tomblin et al., 1997). Given the complex, multidimensional nature of language acquisition and the integral role of speech and language across multiple domains of child development, speech and language disorders occur at relatively high rates (Kena et al., 2014) and, as noted in Chapter 2, are frequently identi- fied in association with (i.e., comorbid with) a wide range of other neuro- developmental disorders. For example, • in clinical practice, when children present with significant delays in the development of communication skills, autism spectrum dis- order is one of the primary diagnostic considerations (Myers and Johnson, 2007); • all children and adolescents with intellectual disability have vary- ing degrees of impairment in communication skills (American Psychiatric Association, 2013); and • multiple studies have demonstrated a strong association between attention deficit hyperactivity disorder and speech and language disorders (Pennington and Bishop, 2009; Tomblin and Nippold, 2014). National Health Interview Survey data from 2000 to 2012 indicate that more than 40 percent of children with speech and language problems 1  While the primary population of focus for this study is children under age 18, the com- mittee reviewed and has included here relevant Individuals with Disabilities Education Act (IDEA) data (which include children from birth to age 21). 

OVERALL CONCLUSIONS 211 experienced comorbidities such as developmental delay (estimated at 32 percent), autism (estimated at 12 percent), and intellectual disability (es- timated at 10 percent) (Bainbridge, 2015). Finally, young children with language impairments are at high risk for later manifestation of learning and mental health disorders. Thus, it is important both to carefully examine the speech and language skills of children with other developmental disorders and to identify other neurodevelopmental disorders among children presenting with speech and language impairments. Among populations of children with conditions as diverse as autism spectrum disorder, attention deficit hyperactivity disorder, traumatic brain injury, and genetic disorders, speech and language disorders may be the most easily identified area of impairment because of the central role of language and communication in the functional capacity of children and adolescents. Supplemental Security Income Research shows that children living in poverty are at greater risk for a disability relative to those not living in poverty (Emerson and Hatton, 2005; Farran, 2000; Fujiura and Yamaki, 2000; Msall et al., 2006; Parish and Cloud, 2006), as well as that childhood disability increases the risk of a family’s living in poverty (Lustig and Strauser, 2007; NASEM, 2015). Data from the U.S. Census 2010 showed that families raising children with a disability experienced poverty at higher rates than families raising children without a disability (21.8 and 12.6 percent, respectively) (Wang, 2005). At the same time, childhood poverty and the accompanying deprivations have significant adverse implications for children with disabilities and their families. Research has established that childhood poverty can exacerbate disabilities and their effects and lead to deleterious outcomes across a range of indicators, including emotional, social, and mental development; academic achievement; and employment during adulthood (Fujiura and Yamaki, 2000; Kuhlthau and Perrin, 2001; Kuhlthau et al., 2005; Parish et al., 2008). The converse is true as well: the consequences of poverty are likely to be especially serious for children with disabilities because of their heightened vulnerabilities, elevated needs for health care, and overall poor health (Kuhlthau et al., 2005; Newacheck and Kim, 2005). As described in Chapter 4, the SSI program for children was estab- lished to address the needs of children with disabilities living in low-income households because they were determined to be “among the most disad- vantaged of all Americans and are deserving of special assistance” (U.S. House of Representatives, 1971). SSI recipients include children whose health conditions or disabilities are severe enough to meet the program’s disability eligibility criteria and whose family income and assets are within 

212 SPEECH AND LANGUAGE DISORDERS IN CHILDREN limits specified by the Social Security Administration. The committee con- cluded that 3. Children of families with low incomes are more likely than the general population to have disabilities, including speech and lan- guage disorders. The Supplemental Security Income (SSI) program is designed to award benefits to the most severely impaired children from low-income, resource-limited families. Currently, 0.31 per- cent of U.S. children receive SSI benefits for speech and language disorders. An analysis of the impact of SSI revealed that the receipt of children’s SSI benefits reduced the percentage of families with incomes below the fed- eral poverty level from 58 percent to 32 percent. Still, economic vulnerabil- ity remains notable for these families. Bailey and Hemmeter (2014) found that approximately 58 percent of families receiving children’s SSI benefits continued to have incomes below 150 percent of the federal poverty level,2 even after accounting for receipt of the benefit. To qualify for SSI benefits, children must meet a complex and detailed set of eligibility criteria that are income- and asset-related, work-related, and disability-related. The evidence required to document severity of dis- ability is extensive and includes both medical evidence—such as formal testing to provide developmental and functional information, signs, symp- toms, and laboratory findings—and parental and teacher reports. Under the SSA’s standards, observations and information from a single source—such as a parent or caregiver—are an insufficient basis for a finding of disability. Assessment, Evaluation, and Standards of Care In accordance with its charge, the committee reviewed standards of care, including diagnostic evaluation and assessment, treatments and pro- tocols, and educational interventions for children with speech and language disorders. The committee reviewed the literature and invited speech, lan- guage, and special education experts to provide additional insights into current standards of care and practices for children with these disorders. Chapters 2 and 3 provide an overview of this review and, when available, include evidence on the efficacy of treatments and interventions. In addition, the committee was asked to identify the kinds of care documented or reported to be received by children in the SSI disability program. As described in Chapter 4, the committee requested a review of a 2  Povertyresearchers typically identify 200 percent of the federal poverty level as the income threshold for adequate subsistence (Boushey et al., 2001). 

OVERALL CONCLUSIONS 213 random sample of case files of children who receive SSI benefits for speech and language disorders. The results of this review helped demonstrate the kinds of evidence the SSA considers when making a disability determination for a child. Based on its review of professional standards of care and the documentation included in a random sample of case files, the committee concluded that 4. To determine the severity of speech and language disorders in children, the Social Security Administration employs the results of professionally administered assessments and also takes into ac- count other clinical evidence that would be consistent with severe speech and language disorders. As described in Chapter 4, the evidence in the sample of case files reviewed by the committee was derived overwhelmingly from diagnostic, evaluation, and treatment information. This evidence helped the committee understand the types of treatment the children in the sample were docu- mented or reported to have received and the extent to which such diagnos- tic 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 152 cases included in the committee’s review, 143 included evidence of standardized testing. Three case files that lacked information regarding standardized testing included diagnostic evidence derived from nonstan- dardized ratings and measurements as well as spontaneous language sam- ples, 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 in- cluded information from speech-language pathologists regarding the child’s speech and language status, and more than half contained 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 noted in Chapter 4, while these findings cannot be considered representa- tive of the entire SSI child population with speech and language disorders, the committee’s review yielded valuable information that is consistent with other sources of evidence considered for this study. In addition, as noted in Chapter 4, the process for identifying chil- dren with speech and language disorders who are eligible for SSI benefits is consistent with the multidimensional, multimethod, and multisource perspective that is evident in current professional practice. This process includes the assessment of children across multiple domains to determine the presence and severity of impairments in any individual areas, as well as their combined and interacting effects on day-to-day functioning. Likewise, 

214 SPEECH AND LANGUAGE DISORDERS IN CHILDREN children’s case records include multiple forms of evidence concerning im- pairment and functioning (e.g., test scores, classroom records, progress in intervention), with no single piece of evidence being considered in isola- tion. 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 SSA’s Listing of Impairments (“Listings”) also are consistent with professional practice in interpreting norm- and criterion-referenced tests of speech and language. For example, meeting the functional equivalence standard re- quires marked limitations in at least two of the six domains of function or an extreme limitation in one domain (C.F.R. 416.926a). Marked and extreme limitations are defined, respectively, as levels of impairment that “seriously” or “very seriously” interfere with the ability “to independently initiate, sustain or complete activities” in a domain. On norm-referenced tests, marked limitations correspond to the level of functioning that would be expected of children whose scores are at least two but less than three standard deviations below the mean. As noted in Chapter 2, in a sample of 100 children, only 2 would be expected to have scores sufficiently low to meet this standard. Even fewer children—only about 1 of every 1,000— would be expected to have scores more than three standard deviations below the mean, the standard for extreme limitation. In children younger than 3 years of age, for whom norm-referenced testing is generally infeasible, chronological age is used as the reference standard for defining limitations sufficiently severe to functionally equal the Listings. Such children have a marked limitation if their functioning in a domain is comparable to that of children who are more than one-half but less than two-thirds of their chronological age; they have an extreme limita- tion if their functioning is typical of children one-half their chronological age or younger. This means that a 24-month-old child functioning at a level consistent with that of typical children between 13 and 18 months of age would have a marked limitation; a 24-month-old functioning at the level of a typical child 12 months of age or younger would have an extreme limita- tion. These definitions of marked and extreme 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 the Individuals with Disabilities Education Act (IDEA) Part C based on developmental de- lays (U.S. Department of Education, 2011; see also Rosenberg et al., 2013). 

OVERALL CONCLUSIONS 215 Trends in Prevalence of the General U.S. Population Compared with Trends in the Supplemental Security Income Population One of the committee’s primary objectives was to consider past and current trends in the prevalence of speech and language disorders among the general U.S. population under age 18 and to compare those trends with trends observed among participants in the SSI childhood disability program. To do so, the committee analyzed clinical studies, nationally rep- resentative survey data, and administrative or service data from a range of sources. These data, however, are primarily serial cross-sections as opposed to longitudinal—that is, they do not follow individual children over time. Instead, these data reflect changes in the prevalence of speech and language disorders observed within populations of respondents (in the case of survey data) or beneficiaries (in the case of SSI data) over successive years. Because children observed in one year may not be the same as children observed in another, the composition of these populations will change over time; consequently, these data cannot be used to describe the natural history of speech and language disorders over time. Not only may changes in popula- tion composition over time affect rates of observed occurrence; changes in programs for children with severe disabilities also will affect the size and characteristics of the population of children who receive benefits based on a severe disability in any given year. Thus, over time, SSI eligibility stan- dards and the eligibility determination process itself, along with broader economic factors such as the Great Recession (from December 2007 to June 2009), also may influence the rate at which speech and language disorders are observed among any given population of children at any given point in time. Despite these data limitations, the committee was able to draw certain conclusions from the evidence regarding the extent to which speech and language disorders are documented in specific populations of children over time. Trends in the General U.S. Population The committee used the best available evidence to assess trends in the prevalence of speech and language disorders in the general U.S. child population. Several sources that collect data on these disorders in chil- dren suggest that over the past decade their prevalence has increased. The two nationally representative surveys that include measures of speech and language disorders in children at multiple points in time are the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs. The National Survey of Children’s Health showed an increase in prevalence of speech and language disorders from 

216 SPEECH AND LANGUAGE DISORDERS IN CHILDREN 3.8 percent (n = 2,697) in 2007 to 4.8 percent (n = 3,916) in 2011, a 26 percent increase. The National Survey of Children with Special Health Care Needs showed an increase in prevalence from 3.2 percent (n = 8,435) in 2005-2006 to 5.0 percent (n = 11,936) in 2009-2010, an increase of 56 percent. Although not directly comparable, the committee reviewed SSI data on initial allowances for speech and language disorders for two points in time to determine the percent increase in those initial allowances. The number of initial allowances for speech and language disorders in 2007 (n = 21,135) and the number in 2011 (n = 29,309) show a 40 percent in- crease. Therefore, the committee concluded that 5. The best available evidence shows an increase in the prevalence of speech and language disorders over the past decade in the U.S. child population. Trends in annual Supplemental Security Income initial allowances parallel this overall increase. Causes, Treatment, and Persistence The committee was asked to identify causes of speech and language disorders and to determine how often these impairments are the result of known causes. Chapter 2 notes that a variety of congenital and acquired conditions may result in abnormal speech and/or language development. These conditions include primary disorders of hearing, as well as specific genetic diseases, brain malformation syndromes, toxic exposures, nutri- tional deficiencies, injuries, and epilepsy. (Box 2-3 in Chapter 2 includes examples of speech and language disorders with known causes.) In some cases, the cause of speech and language disorders in children may not be known. In these cases, research points to an array of possible risk factors for these disorders in children. To date, the evidence best supports a cumu- lative risk model in which increases in risk are greater for combinations of risk factors than for individual factors (Harrison and McLeod, 2010; Lewis et al., 2015; Pennington and Bishop, 2009; Reilly et al., 2010; Whitehouse et al., 2014). For example, one study of speech sound disorders found that three variables—male sex, low maternal education, and positive family his- tory of developmental communication disorders—were individually associ- ated with increased odds of speech sound disorder, but the odds of such a disorder were nearly eight times greater in a child with all three risk factors than in a child with none of them (Campbell et al., 2003). As detailed in Chapter 3, a range of different strategies are used to treat mild, moderate, and severe speech and language disorders in children. These strategies vary based on the particular needs and circumstances of the child. Several important factors shape the intervention program for any given child. These factors include treatment objectives (e.g., conventional or 

OVERALL CONCLUSIONS 217 compensatory communication goals), the nature of the disorder, the devel- opmental level of the child, the individuals involved in the intervention (or “agents of change”), and the settings in which treatment is provided (e.g., school-based, home-based, or clinic-based). In reviewing the evidence, the committee found that, with treatment, mild speech and language disorders may completely resolve or be limited to relatively minor impairments; moderate speech and language disorders may substantially diminish, with residual impairments in an associated domain, such as reading and literacy. In the most severe cases, however, even with treatment, core speech and language deficits will likely continue into adolescence and may be lifelong. Therefore, committee concluded that 6. Children with mild to moderate speech and language disorders will benefit from a variety of treatments. For children with severe speech and language disorders, treatment improves function; with few exceptions, however, substantial functional limitations will persist. An implication of this conclusion is that a severe disorder will persist over time, thereby necessitating ongoing educational, social, and health supports and, in the case of children from low-income families, continuing eligibility for financial assistance through the SSI program. Trends Among Supplemental Security Income Program Participants To identify trends among participants in the SSI program, the commit- tee reviewed administrative data collected by the SSA on initial allowances and recipients based on primary speech and language impairments. Between 2004 and 2014, the number of children receiving SSI benefits for speech and language disorders increased from 90,281 to 315,523, a 249 percent increase. Given the substantial increase in the total number of recipients, the committee reviewed older data to help explain this growth. At the com- mittee’s request, the SSA provided supplemental data for review beginning in 1994, the year in which the impairment code for speech and language impairment (3153) was introduced. From its review of the data, the com- mittee concluded that 7. The total number of children receiving Supplemental Security Income for speech and language disorders more than tripled in the past decade. In addition to an increase in prevalence of these disor- ders in the general U.S. child population, this growth is explained primarily by two factors: 

218 SPEECH AND LANGUAGE DISORDERS IN CHILDREN •  introduction of a new impairment code for speech and the language disorders in 1994, and •  continuing eligibility of children whose severe speech and the language disorders persist throughout childhood. Prior to 1994, there were zero initial allowances for the impairment code for speech and language impairment in children (3153). The current total number of recipients reflects both the accumulation over time of new individuals in this impairment category and the very low attrition from the program due to the above-noted persistence of severe speech and language disorders throughout childhood and adolescence. As described in Chapter 5, in 1994, the first year that the new impair- ment code existed, only 1,585 children met the eligibility criteria under this new code. In 1995, an additional 4,109 children began receiving benefits under this new code; in 1996, an additional 4,119 children were allowed benefits, and so forth for each subsequent year. Given that children with severe speech and language impairments are likely to continue to have those severe impairments throughout adolescence and into adulthood, the total number of SSI recipients who received benefits under this new code in any given year approaches the total number of children who became eligible in each of the preceding 18 years. As a result, the total number of children receiving SSI benefits for speech and language impairments in 2013 will include almost all of the children who became eligible in the years from 1996 through 2013. Several additional factors contribute to the changes observed in the number of children who receive SSI benefits for speech and language dis- orders. For example, the total number of child SSI recipients fluctuates depending on the number of initial allowances, terminations, suspensions, and suspension reentries. When the number of allowances exceeds the number of terminations and suspensions in a year, the total number of recipients increases for that year. Overall growth in the population of chil- dren would be expected to contribute some growth to the program as well. Consequently, the number of children who are allowed (found eligible for the program) in a given year can be expected to exceed the number who exit the program. Finally, allowances are affected by macroeconomic conditions. During a period of economic expansion, as family income increases and joblessness decreases, fewer children are likely to meet the SSA’s financial eligibility criteria. By contrast, during periods of economic downturn, such as the Great Recession (from December 2007 to June 2009), more children will meet the program’s financial eligibility criteria as a result of relatively higher unemployment. 

OVERALL CONCLUSIONS 219 Supporting Evidence for the Committee’s Overall Conclusions Box 6-1 shows the connections between each of the committee’s over- all conclusions and its chapter-specific findings and conclusions. Box 6-2 collects all of the committee’s chapter-specific findings and conclusions organized by chapter. BOX 6-1 Overall Conclusions and Supporting Evidence* 1. Severe speech and language disorders in children are conditions that in- terfere with communication and learning and represent serious lifelong threats to social, emotional, educational, and employment outcomes. Findings 1-3.  a 15-year follow-up study of children with speech and language dis- In orders, 52 percent of the children initially identified with such disorders had residual learning disabilities and poor academic achievement later in life. 2-6. Children with severe speech and language disorders have an in- creased risk of a variety of adverse outcomes, including mental health and behavior disorders, learning disabilities, poor academic achieve- ment, and limited employment and social participation. Conclusions 1-2. Mild speech and language impairments in preschool will sometimes be transient; severe forms of these disorders have a high probability of being long-term disabilities. 2-1. Severe speech and language disorders represent serious threats to children’s social, emotional, educational, and employment outcomes. 2-2. Severe speech and language disorders are debilitating at any age, but their impacts on children are particularly serious because of their widespread adverse effects on development and the fact that these negative consequences cascade and build on one another over time. 2.  Speech and language disorders affect between 3 and 16 percent of U.S. children. Approximately 40 percent of children with speech and language disorders in nationally representative studies have serious comorbidities such as intellectual disabilities, autism spectrum disorder, and other neurodevelopmental and behavioral disorders. Findings 1-4. Twenty-one percent of all special education eligibility in the United States is for speech and language impairments—three times greater than eligibility for autism or intellectual disability. continued 

220 SPEECH AND LANGUAGE DISORDERS IN CHILDREN BOX 6-1  Continued 2-1. Speech and language disorders are prevalent, affecting between 3 and 16 percent of U.S. children. Prevalence estimates vary according to age and the diagnostic criteria employed, but best evidence sug- gests that approximately 2 percent of children have speech and/or language disorders that are severe according to clinical standards. 2-5. Speech and language disorders frequently co-occur with other neu- rodevelopmental disorders and may be among the earliest symptoms of serious neurodevelopmental conditions. 5-3. The overall prevalence of reported speech and language disorders of any severity ranges from 2 to 16 percent of the general population of children and young adults aged birth through 21 years. 5-4. Two national surveys show that boys manifest speech and language disorders approximately twice as frequently as girls. 5-8. The most commonly occurring comorbid diagnosis in the Medicaid claims of children with speech and language disorders is attention deficit hyperactivity disorder, seen in between 6.7 and 11.5 percent of children on Medicaid. 5-9. Only about one-third of children with speech and language impair- ments in the SSI program have a secondary impairment recorded. Among these children, autistic disorder and other developmental disorders was the most commonly occurring secondary impairment category listed. 3.  Children of families with low incomes are more likely than the general population to have disabilities, including speech and language disor- ders. The Supplemental Security Income (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. Findings 4-1.  qualify for the SSI program, children and their families must meet To 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. 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. 5-12.  Children with speech and language disorders in the general U.S. population are more likely than children without such disorders to live in poverty (26 versus 21 percent) or low-income households (28 versus 23 percent). 5-13.  The greatest number of child SSI recipients are those with the lowest family incomes (at or below 100 percent of the federal poverty level). 

OVERALL CONCLUSIONS 221 Conclusions 5-8. Children with speech and language disorders experience significant barriers to receiving needed health care services. 5-9. The net result of suspending and terminating higher-income children from the SSI program is the concentration of children from the poorest and most vulnerable families remaining in the program. 5-10.  Data from national surveys indicate that speech and language disor- ders are more common among children from families living in poverty than among children from families not living in poverty. 4.  determine the severity of speech and language disorders in children, To the Social Security Administration employs the results of professionally administered assessments and also takes into account other clinical evidence that would be consistent with severe speech and language disorders. Findings 5-5. Two national surveys show increases in the prevalence of speech and language disorders of between 26 and 56 percent over 4-year periods within the past decade. 5-6. The number of children receiving SSI benefits for a primary speech or language impairment increased by 171 percent between 2004 and 2014. However, the number of initial allowances per year (i.e., newly eligible beneficiaries) increased by only 24 percent during this time period, with the exception of a more significant increase (28 percent) during the recession (December 2007 to June 2009). 5.  The best available evidence shows an increase in the prevalence of speech and language disorders over the past decade in the U.S. child population. Trends in annual Supplemental Security Income initial allow- ances parallel this overall increase. Findings 4-5.  qualify for SSI benefits, children must meet a complex and detailed To 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 professionals 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 normal age-appropriate functional levels. 4-7.  determine the severity of speech and language disorders in chil- To dren, the SSA employs the results of professionally administered assessments and also takes into account other clinical evidence that would be consistent with severe speech and language disorders. continued 

222 SPEECH AND LANGUAGE DISORDERS IN CHILDREN BOX 6-1  Continued 6. Children with mild to moderate speech and language disorders will ben- efit from a variety of treatments. For children with severe speech and language disorders, treatment improves function; with few exceptions, however, substantial functional limitations will persist. Findings 3-1. Few treatments exist that can alter the underlying cause of a speech or language disorder. 3-5. Evidence indicates that speech and language therapy results in gains in the skills and behaviors targeted by the therapy. 3-6. Toddlers who are late talkers often make developmental gains; how- ever, these gains may be less likely in children whose condition is severe and who have other neurodevelopmental and socioeconomic risk factors. 3-7. Children with language disorders at the age of 5 or 6 are likely to have persistent language problems throughout childhood. Conclusions 3-1. Severe speech and language disorders are likely to persist throughout childhood. 3-2. Speech and language therapy does not substantially alter the course of these disorders and thus is not curative; however, it provides im- proved function in those areas that are targeted. 7. The total number of children receiving Supplemental Security Income for speech and language disorders more than tripled in the past decade. In addition to an increase in prevalence of these disorders in the general U.S. child population, this growth is explained primarily by two factors: 

OVERALL CONCLUSIONS 223 • t  he introduction of a new impairment code for speech and lan- guage disorders in 1994, and • t  he continuing eligibility of children whose severe speech and lan- guage disorders persist throughout childhood. Findings 5-2. Administrative and service data provide estimates of children who re- ceive benefits or services for speech and language disorders through large federal programs. The SSA established the impairment code for speech and language disorders (3153) in 1994. 5-6. The number of children receiving SSI benefits for a primary speech or language impairment increased by 171 percent between 2004 and 2014. However, the number of initial allowances per year (i.e., newly eligible beneficiaries) increased by only 24 percent during this time period, with the exception of a more significant increase (28 percent) during the recession (December 2007 to June 2009). Conclusion 5-5. The sharp increase in the number of SSI recipients eligible because of speech and language disorders observed between 2004 and 2014 is explained almost entirely by (1) the introduction in 1994 of a new impairment code for speech and language impairment, and (2) the marked and extreme levels of impairment among children who receive SSI benefits for speech and language disorders that are unlikely to be resolved by the time a child reaches age 18. * This committee was not charged with making recommendations to the Social Security Administration. 

224 SPEECH AND LANGUAGE DISORDERS IN CHILDREN BOX 6-2 Chapter-Specific Findings and Conclusions Chapter 1: Introduction Findings 1-1. Developmental disorders are identified when expected functional skills in children fail to emerge. 1-2.  Underlying factors that contribute to developmental disorders are likely to have been present well before the signs are manifest in the child’s development. 1-3.  a 15-year follow-up study of children with speech and language dis- In orders, 52 percent of the children initially identified with such disorders had residual learning disabilities and poor academic achievement later in life. 1-4. Twenty-one percent of all special education eligibility in the United States is for speech and language impairments—three times greater than eligibility for autism or intellectual disability. Conclusions 1-1.  is generally more accurate to describe the “age of identification” of It a speech or language disorder than to focus on the “age of onset.” 1-2. Mild speech and language impairments in preschool will sometimes be transient; severe forms of these disorders have a high probability of being long-term disabilities. Chapter 2: Childhood Speech and Language Disorders in the General U.S. Population Findings 2-1. Speech and language disorders are prevalent, affecting between 3 and 16 percent of U.S. children. Prevalence estimates vary accord- ing to age and the diagnostic criteria employed, but best evidence suggests that approximately 2 percent of children have speech and/ or language disorders that are severe according to clinical standards. 2-2. Some speech and language disorders result from known biological causes. 2-3.  many cases, these disorders have no identifiable cause, but factors In including male sex and reduced socioeconomic and educational re- sources have been associated with an increased risk of the disorders. 2-4. Diagnosing speech and language disorders in children is a complex process that requires integrating information on speech and language with information on biological and medical factors, environmental circumstances, and other areas of development. 2-5.  Speech and language disorders frequently co-occur with other neu- rodevelopmental disorders and may be among the earliest symptoms of serious neurodevelopmental conditions. 

OVERALL CONCLUSIONS 225 2-6.  Children with severe speech and language disorders have an in- creased risk of a variety of adverse outcomes, including mental health and behavior disorders, learning disabilities, poor academic achieve- ment, and limited employment and social participation. Conclusions 2-1. Severe speech and language disorders represent serious threats to children’s social, emotional, educational, and employment outcomes. 2-2. Severe speech and language disorders are debilitating at any age, but their impacts on children are particularly serious because of their widespread adverse effects on development and the fact that these negative consequences cascade and build on one another over time. 2-3. Severe speech and language disorders may be one of the earliest detectable symptoms of other serious neurodevelopmental condi- tions; for this reason, they represent an important point of entry to early intervention and other services. 2-4.  is critically important to identify such disorders for two reasons: first, It because they may be an early symptom of other serious neurodevel- opmental disorders, and second, so that interventions aimed at fore- stalling or minimizing their adverse consequences can be undertaken. Chapter 3: Treatment and Persistence of Speech and Language Disorders in Children Findings 3-1. Few treatments exist that can alter the underlying cause of a speech or language disorder. 3-2. Alternative and augmentative communication treatment can provide nonspeech alternatives to speech that lead to functional gains in communication. 3-3. Speech and language therapy during the preschool years focuses on the promotion of implicit learning of an abstract system of principles and symbols. 3-4.  accordance with policies and practice guidelines, speech-language In intervention often is conducted in the home and/or classroom and incorporates communication needs within the family and the educa- tional curriculum. 3-5. Evidence indicates that speech and language therapy results in gains in the skills and behaviors targeted by the therapy. 3-6. Toddlers who are late talkers often make developmental gains; how- ever, these gains may be less likely in children whose condition is severe and who have other neurodevelopmental and socioeconomic risk factors. 3-7. Children with language disorders at the age of 5 or 6 are likely to have persistent language problems throughout childhood. continued 

226 SPEECH AND LANGUAGE DISORDERS IN CHILDREN BOX 6-2  Continued Conclusions 3-1. Severe speech and language disorders are likely to persist throughout childhood. 3-2. Speech and language therapy does not substantially alter the course of these disorders and thus is not curative; however, it provides im- proved function in those areas that are targeted. 3-3. Although there is a large literature on treatment effects, data are lack- ing on the effect of treatment on more general quality-of-life outcomes, particularly among children with severe disorders and those living in poverty. Chapter 4: Supplemental Security Income for Children with Speech and Language Disorders Findings 4-1.  qualify for the SSI program, children and their families must meet To 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. 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.  analysis of the impact of SSI revealed that children’s SSI benefits An raised family income above the federal poverty level 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 federal poverty level, even after accounting for receipt of the benefit. 4-4. More children receive services under the Individuals with Disabilities Education Act (IDEA) and the Title V Program for Children with Spe- cial Health Care Needs—which are designed to identify children with substantial disability-related needs for health and educational ser- vices—than receive SSI. Neither of these programs uses a “marked or extreme” standard for disability, and neither has financial eligibility regulations. 4-5.  qualify for SSI benefits, children must meet a complex and detailed To 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 professionals and standardized testing. Parental observations and reports alone are an insufficient basis for a finding of disability. 

OVERALL CONCLUSIONS 227 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 normal age-appro- priate functional levels. 4-7.  determine the severity of speech and language disorders in chil- To dren, the SSA employs the results of professionally administered assessments and also takes into account other clinical evidence 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 gen- eral population to have disabilities, including speech and language 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. 4-3. The disability standard for SSI (at least two to three standard devia- tions 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 families out of poverty. Chapter 5: Comparison of Trends in Childhood Speech and Language Disorders in the General Population and the SSI Program Population Findings 5-1. Multiple data sources provide estimates of speech and language disorders in children (under age 18) in the general U.S. population. 5-2. Administrative and service data provide estimates of children who re- ceive benefits or services for speech and language disorders through large federal programs. The SSA established the impairment code for speech and language disorders (3153) in 1994. 5-3. The overall prevalence of reported speech and language disorders of any severity ranges from 2 to 16 percent of the general population of children and young adults aged birth through 21 years. 5-4. Two national surveys show that boys manifest speech and language disorders approximately twice as frequently as girls. 5-5. Two national surveys show increases in the prevalence of speech and language disorders of between 26 and 56 percent over 4-year periods within the past decade. continued 

228 SPEECH AND LANGUAGE DISORDERS IN CHILDREN BOX 6-1  Continued 5-6. The number of children receiving SSI benefits for a primary speech or language impairment increased by 171 percent between 2004 and 2014. However, the number of initial allowances per year (i.e., newly eligible beneficiaries) increased by only 24 percent during this time period, with the exception of a more significant increase (28 percent) during the recession (December 2007 to June 2009). 5-7. More than 40 percent of children with speech and language disorders in the general U.S. population experience comorbidities such as neu- rodevelopmental conditions, autism spectrum disorder, and behavioral problems. 5-8. The most commonly occurring comorbid diagnosis in the Medicaid claims of children with speech and language disorders is attention deficit hyperactivity disorder, seen in between 6.7 and 11.5 percent of children on Medicaid. 5-9. Only about one-third of children with speech and language impair- ments in the SSI program have a secondary impairment recorded. Among these children, autistic disorder and other developmental disorders was the most commonly occurring secondary impairment category listed. 5-10.  Between 8.3 and 57.1 percent of children with speech problems in the general U.S. population are reported to have unmet needs for at least one indicator of health care access or service utilization. 5-11.  Administrative data from IDEA suggest that between 1.5 and 1.7 per- cent of all U.S. children receive special education services as a result of a primary condition of speech and/or language impairment. 5-12.  Children with speech and language disorders in the general U.S. population are more likely than children without such disorders to live in poverty (26 versus 21 percent) or low-income households (28 versus 23 percent). 5-13.  The greatest number of child SSI recipients are those with the lowest family incomes (at or below 100 percent of the federal poverty level). Conclusions 5-1.  single dataset or even a small set of data sources can provide No definitive population estimates of the prevalence of speech and lan- guage disorders over time among U.S. children. 

OVERALL CONCLUSIONS 229 5-2. Children with speech and language disorders in the general U.S. population are not comparable to the population of children who re- ceive SSI benefits for speech and language disorders. 5-3. Changes in the SSA’s program procedures, changes in eligibility and determination guidelines, cohort composition, and macroeconomic conditions all influence changes in the rate of identification of speech and language disorders within a given cohort of children at any point in time. 5-4. The information available on national trends in speech and language disorders in children—especially those disorders that are severe—is extremely limited. Available data suggest an increase in the overall prevalence of speech and language disorders in the general child population over the past decade. 5-5. The sharp increase in the number of SSI recipients eligible because of speech and language disorders observed between 2004 and 2014 is explained almost entirely by (1) the introduction in 1994 of a new impairment code for speech and language impairment, and (2) the marked and extreme levels of impairment among children who receive SSI benefits for speech and language disorders that are unlikely to be resolved by the time a child reaches age 18. 5-6. Children with speech and language disorders have a high likelihood of experiencing other health conditions as well. 5-7. The modest rates of comorbidities in the SSI data are due to incon- sistencies in how secondary impairments are coded; the absence of a recorded secondary impairment does not mean that the child did not actually have another impairment, only that such a secondary impair- ment was not recorded as part of the eligibility determination process. 5-8. Children with speech and language disorders experience significant barriers to receiving needed health care services. 5-9. The net result of suspending and terminating higher-income children from the SSI program is the concentration of children from the poorest and most vulnerable families remaining in the program. 5-10.  Data from national surveys indicate that speech and language disor- ders are more common among children from families living in poverty than among children from families not living in poverty. 

230 SPEECH AND LANGUAGE DISORDERS IN CHILDREN FINAL THOUGHTS This report represents the National Academies of Sciences, Engineering, and Medicine’s first comprehensive study of speech and language disorders in children. Using available data drawn from various sources, the commit- tee carried out the study called for in its statement of task. First, this report presents an overview of the current status of diagnosis and treatment of speech and language disorders and the level of impairment these disor- ders cause among children. Second, the report identifies past and current trends in the prevalence and persistence of speech and language disorders among the general population of U.S. children and compares these trends with those found in the SSI childhood disability population. The evidence presented in this report underscores the long-term and profound impact of severe speech and language disorders on children and their families, as well as the degree to which children with such disorders can be expected to be a significant presence in a program such as SSI, whose purpose is to provide basic financial assistance to families of children with the severest disabilities. It is the committee’s hope that this report will make a substan- tial contribution to understanding the nature of severe speech and language disorders in children and will provide a strong foundation for future efforts in policy, practice, and research. The committee’s findings and conclusions characterize the current state of knowledge. Its findings also highlight the challenges that arise in under- taking a close examination of children’s health status in the area of speech and language because of deficiencies in the evidence across both the general population and, in this case, the specific population of children enrolled in the SSI program. In particular, the committee notes that its ability to ad- dress salient questions more thoroughly was limited by the absence of two basic types of information: (1) longitudinal data on children who receive SSI benefits on the basis of speech and language disorders, and (2) compre- hensive information on the prevalence of these disorders among the general U.S. child population that captures a range of health, demographic, and socioeconomic characteristics such as gender, income, race/ethnicity, and condition severity. Longitudinal data on children who receive SSI benefits on the basis of speech and language disorders would provide insight into these children’s status over time, as well as the types and range of treat- ments and their impact on health and functioning. This information would be useful in assessing the impact of treatment on continuing eligibility and would significantly enhance the SSA’s ability to shape its continuing disability review process for children. More complete information on the prevalence of speech and language disorders in the general U.S. child popu- lation would enable the SSA to better determine the extent to which its initial SSI eligibility determination rates align with the prevalence of these 

OVERALL CONCLUSIONS 231 disorders within both the general child population and the population of low-income children. It is this latter group of children who are most likely to qualify for SSI benefits if they experience speech and language disorders that reach the degree of severity required to satisfy the SSI program’s rigor- ous eligibility standard. Despite its limitations, the evidence presented in this report offers valu- able insight into the relationship between the general population of children with speech and language disorders on the one hand and the presence of children with these disorders in the SSI program on the other. Furthermore, the evidence presented here can assist policy makers, health and education professionals, and SSI program administrators in understanding the extent to which the program’s basic design and administrative process operate together to connect the nation’s most severely impaired and disadvantaged children with speech and language disorders to the benefits the program offers. REFERENCES American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Association. Bailey, M. S., and J. Hemmeter. 2014. Characteristics of noninstitutionalized DI and SSI program participants, 2010 update. http://www.ssa.gov/policy/docs/rsnotes/rsn2014-02. html (accessed July 10, 2015). Bainbridge, K. 2015. Speech problems among US children (age 3-17 years). Workshop pre- sentation to the Committee on the Evaluation of the Supplemental Security Income (SSI) Disability Program for Children with Speech Disorders and Language Disorders, May 18, Washington, DC. Boushey, H., C. Brocht, B. Gundersen, and J. Bernstein. 2001. Hardships in America: The real story of working families. Washington, DC: Economic Policy Institute. Campbell, T. F., C. A. Dollaghan, H. E. Rockette, J. L. Paradise, H. M. Feldman, L. D. Shriberg, D. L. Sabo, and M. Kurs-Lasky. 2003. Risk factors for speech delay of un- known origin in 3-year-old children. Child Development 74(2):346-357. Clegg, J., C. Hollis, L. Mawhood, and M. Rutter. 2005. Developmental language disorders—A follow-up in later adult life. Cognitive, language and psychosocial outcomes. Journal of Child Psychology and Psychiatry and Allied Disciplines 46(2):128-149. Eadie, P., A. Morgan, O. C. Okoumunne, K. T. Eecen, M. Wake, and S. Reilly. 2015. Speech sound disorder at 4 years: Prevalence, comorbidities, and predictors in a community cohort of children. Developmental Medicine & Child Neurology 57(6):578-584. Emerson, E., and C. Hatton. 2005. The socio-economic circumstances of families with dis- abled children. Disability and Society 22(6):563-580. Farran, D. 2000. Another decade of intervention for children who are low-income or disabled: What do we know now? In Handbook of early childhood intervention (2nd ed.), edited by J. P. Shonkoff and S. J. Meisels. Cambridge, England: Cambridge University Press. Pp. 510-548. Fujiura, G. T., and K. Yamaki. 2000. Trends in demography of childhood poverty and dis- ability. Exceptional Children 66:187-199. 

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