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Summary Speech and language are central to the human experience, and their acquisition is a seemingly automatic process that continues from birth through adolescence. The identification of speech and language disorders often occurs when a child does not achieve expected or normative develop- mental milestones. Such disorders impair a childâs functioning, and when they are severe enough to disrupt a childâs ability to communicate, they have especially serious consequences. In their most severe forms, moreover, such conditions can be expected to persist over a lifetime. When combined with other risks, such as poverty, severe speech and language disorders can increase risk for a wide variety of adverse outcomes, including social isolation and mental health disorders, learning disabilities, behavior disor- ders, poor academic achievement, and chronic underemployment. These outcomesâsome of which can be mitigated through early identification and interventionâpoint to the array of needs children with speech and language disorders are likely to have and to the kinds of ongoing support they may require. The Supplemental Security Income (SSI) program for children pro- vides financial assistance to children from low-income, resource-limited families who have been determined to have conditions that meet the dis- ability standard required under law. When sufficiently severe, speech and language disorders can qualify children for SSI disability assistance. Over the past several decades, the number of children receiving SSI has risen overall, and the number receiving SSI on the basis of speech and language disorders also has risen. A 2010 report issued by the U.S. Government Accountability Office (GAO) found an increase between 2000 and 2010 1
2 SPEECH AND LANGUAGE DISORDERS IN CHILDREN in both applications and allowances (applicants determined to meet the disability criteria) for children with speech and language impairments. During this period, the number of applications for speech and language impairments increased from 21,615 to 49,664, while the number of chil- dren found to meet the disability criteria increased from 11,565 to 29,147. Based on the GAOâs findings, the Social Security Administration (SSA) determined that additional research was needed to understand the increases in the number of children applying for and receiving SSI benefits on the basis of speech and language disorders. It is in the context of the changes observed in the SSI program for children that the SSA requested this study. STUDY CHARGE In 2014, the SSA Office of Disability Policy requested that the Institute of Medicine of the National Academies of Sciences, Engineering, and Medicine convene a consensus committee to identify past and current trends in the prevalence and persistence of speech and language disorders among the general U.S. population under age 18 and compare those trends with trends among the SSI childhood disability population, and to provide an overview of the current status of the diagnosis and treatment of speech and language disorders and the levels of impairment due to these disorders in the U.S. population under age 18. (See Box S-1 for the committeeâs full statement of task.) OVERALL CONCLUSIONS The committee reviewed a range of sources to respond to its charge, including published research on the etiology, epidemiology, and treatment of childhood speech and language disorders; expert testimony; data from clinical studies; data from nationally representative surveys; and data from federal programs. Collectively, the findings and conclusions presented in this report represent the committeeâs responses to the objectives, goals, and activities specified in its statement of task. The findings are statements of the evidence; the conclusions are inferences, interpretations, or generaliza- tions drawn from the evidence and supported by the committeeâs findings. After reviewing the evidence, the committee arrived at seven overall conclusions. Each of these is described in detail in the sections that follow. Impact of Severe Speech and Language Disorders Severe speech and language disorders in children are associated with significant impairment in functioning. Children with severe speech and lan- guage disordersâthose whose functioning is considered to be two or more
SUMMARY 3 BOX S-1 Statement of Task An ad hoc committee will conduct a study to address the following task order objectives: â¢ dentify past and current trends in the prevalence and persistence of I speech disorders and language disorders for the general U.S. population under age 18 and compare those trends to trends in the Supplemental Security Income (SSI) childhood disability population; and â¢ rovide an overview of the current status of the diagnosis and treatment P of speech disorders and language disorders, and the levels of impairment in the U.S. population under age 18. To accomplish this goal, the committee will: â¢ ompare the national trends in the number of children with speech C disorders and language disorders under age 18 with the trends in the number of children receiving SSI on the basis of speech disorders and language disorders; and describe the possible factors that may contribute to any differences between the two groups; and â¢ dentify current professional standards of pediatric and adolescent health I care for speech disorders and language disorders and identify the kinds of care documented or reported to be received by children in the SSI childhood disability population. To perform the above activities, the committee shall do the following with respect to the two child populations: â¢ dentify national trends in the prevalence of speech disorders and I language disorders in children and assess factors that influence these trends. â¢ dentify the causes of speech disorders and language disorders and I determine how often these disorders are the result of known causes. â¢ dentify the average age of onset and the gender distribution and assess I the levels of impairment within age groups. â¢ ssess how age, development, and gender may play a role in the A progression of some speech disorders and language disorders. â¢ dentify common comorbidities among pediatric speech disorders and I language disorders. â¢ dentify which speech disorders and language disorders are most I amenable to treatment and assess typical or average time required for improvement in disorder to manifest following diagnosis and treatment. â¢ dentify professionally accepted standards of care (such as diagnos- I tic evaluation and assessment, treatment planning and protocols, and educational interventions) for children with speech disorders and with language disorders.
4 SPEECH AND LANGUAGE DISORDERS IN CHILDREN standard deviations from the normâmay 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. The functional requirements for language and communication increase continually throughout childhood. For children with moderate to severe speech and language disorders, these requirements often outpace their de- velopment. Thus, even if a child with such a disorder is able to make at least some developmental progress through treatment, the gap between his or her abilities and functional expectations may nonetheless continue to widen. Prevalence and Comorbidity The committee was asked to identify past and current trends in the prevalence of speech and language disorders in the general population un- der 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 in children. In addition, the committee was asked to identify common co- morbidities (or co-occurring conditions) of childhood 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 administrative data from large federal programs. 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 the best evidence available: prevalence estimates of speech and language disorders from peer-reviewed studies of U.S. chil- dren (between 3.8 and 15.6 percent) and prevalence estimates of speech and language disorders from three national surveys (between 3.2 and 7.7 percent). However, the available data regarding the prevalence of childhood speech and language disorders within the general population are limited in several ways. Specifically, the sources of data considered by the commit- tee vary markedly in how speech and language impairments are defined
SUMMARY 5 and identified, the degree to which the level of severity is documented, the reporting sources, and the characteristics of the populations within each dataset. For example, many of the sources of data include information re- ported by a parent or a caregiver but include no corroborating 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 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 disor- ders may be included in other reported categories, such as âdevelopment delaysâ or âmultiple disabilities,â or reported as impairments secondary to primary conditions such as autism spectrum disorder or primary disorders of hearing, thereby effectively deflating the number of speech and language disorders reported. Although the committee encountered challenges, it found sufficient evi- dence to estimate that 3 to 16 percent of the general population of children from birth through age 21 experience problems with speech or language.1 For example, studies on childhood speech sound disorders show overall prevalence rates ranging from 3 to 16 percent. Research on childhood lan- guage disorders shows overall prevalence rates of 6 to 15 percent. And one population-based study of specific language impairment found a prevalence rate of 7.4 percent among children in kindergarten. In addition, data from the National Survey of Children with Special Health Care Needs and the National Survey of Childrenâs Health show reported prevalence of speech and language disorders between 3 and 5 percent. And one recent national survey on voice, swallowing, speech, and language problems in children found that 7.7 percent had such problems according to parent or guardian reports. Finally, National Health Interview Survey data from 2000 to 2012 indicate that more than 40 percent of children with speech and language problems experienced comorbidities such as developmental delay (estimated at 32 percent), autism (estimated at 12 percent), and intellectual disability (estimated at 10 percent). Within the population of all children with speech and language disor- ders, a small group will have disorders severe enough to meet the standard of disability for the SSI program. Within that latter population, even fewer children will both meet the SSI financial eligibility standard and actually enroll in the program (see Figure S-1). 1â 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).
6 SPEECH AND LANGUAGE DISORDERS IN CHILDREN FIGURE S-1â The number of children receiving SSI for speech and language disor- ders is a small subpopulation among the general population of U.S. children. 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 below 200 percent of the federal poverty level. Parameters used to generate the numbers 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 percent cutoff of 200 percent. These populations are not mutually exclusive.
SUMMARY 7 Supplemental Security Income Childhood poverty and the accompanying deprivations have significant adverse implications for children with disabilities. 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. 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. The SSI program for children was established to address the needs of children with disabilities living in low-income households because they were determined to be âamong the most disadvantaged of all Americans and are deserving of special assistance.â SSI recipients include children whose health conditions or disabilities are severe enough to meet the pro- gramâs disability eligibility criteria and whose family income and assets are within limits specified by the SSA. The committee concluded 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. In December 2014, 213,688 children were receiving SSI benefits as the result of a primary speech or language impairment (16 percent of all chil- dren receiving SSI benefits). Figure S-1 shows that these children represent a small subpopulation among the general population of U.S. children. The majority of children who receive SSI benefits are from families with a house- hold income less than 200 percent of the federal poverty level (FPL). The number of families with incomes less than 200 percent of the FPL changes over time. That is, as economic conditions deteriorate, more families join the ranks of those with incomes at or below a defined poverty level. This occurred most recently following the 2008-2009 recession in the United States. As a result, more children would have met the financial eligibility cri- teria for SSI benefits. This means that an increase in the number of children with speech and language disorders receiving SSI may not reflect an increase in these disorders, but instead may arise from an increased number of chil- dren with these disorders who meet the poverty threshold for SSI eligibility
8 SPEECH AND LANGUAGE DISORDERS IN CHILDREN (NASEM, 2015). However, there are no reliable estimates of the number of children living in poverty who also have speech and language disorders. Assessment, Evaluation, and Standards of Care The committee reviewed standards of care, including diagnostic evalu- ation and assessment, treatments and protocols, and educational interven- tions, for children with speech and language disorders. The committee reviewed the literature and invited speech, language, and special education experts to provide additional insights into current standards of care and practices for children with speech and language disorders, including evi- dence on the efficacy of treatments and interventions, when available. 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. The committee requested a review of a 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. To qualify for SSI benefits, children must meet a complex and detailed set of eligibility criteria that are income- and resource-related, work-related, and disability-related. The evidence required to document severity of dis- ability is extensive and includes both medical evidenceâsuch as formal test- ing to provide developmental and functional information, signs, symptoms, and laboratory findingsâand parental and teacher reports. Under the SSAâs standards, observations and information from a single sourceâsuch as a parent or caregiverâare an insufficient basis for a finding of disability. For example, the majority of the cases in the random sample included evidence of standardized testing (143 of 152 files), and virtually all of the case files included information from speech-language pathologists regarding the childâs speech and language status (150 of 152 files). While these findings cannot be considered representative of the entire SSI child population with speech and language disorders, the review offered valuable information that is consistent with other sources of evidence considered by the committee.
SUMMARY 9 Trends in the General U.S. Population Compared with Trends in the Supplemental Security Income Program One of the committeeâs 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 this end, the committee analyzed clinical studies, nationally representa- tive survey data, and administrative or service data from a range of sources. These data, however, are primarily serial cross-sections as opposed to lon- gitudinal data. Thus, 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 and do not follow individual children over time. Without longitudinal data, it is not possible to describe the natural course of these disorders. Moreover, because children observed in one year may not be the same as those observed in another, the composition of the populations reflected in the data changes from year to year. Not only may changes in population composition over time affect rates of observed occurrence; changes in pro- grams that provide supports 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 standards and the eligibility determination process itself, along with broader economic factors such as the recession of 2008-2009, may in- fluence the rate at which speech and language disorders are observed among any given population of children at any given point in time. Despite the above limitations, the committee was able to draw conclu- sions 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 evidence available to assess trends in the prevalence of speech and language disorders in the general U.S. child popu- lation. Several sources that collect data on speech and language disorders in children suggest that over the past decade, the prevalence of these condi- tions has increased. Although there have been no studies describing why the prevalence of speech and language disorders has increased over time, available epidemiologic literature related to children with autism spectrum disorder and attention deficit hyperactivity disorder may provide insight. Factors identified as causes for these increases include increased awareness of developmental disorders, increased availability of early intervention and special education services, and changes in the definition of certain
10 SPEECH AND LANGUAGE DISORDERS IN CHILDREN conditions (e.g., autism spectrum disorder). The two nationally representa- tive surveys that include measures of speech and language disorders in chil- dren at multiple points in time are the National Survey of Childrenâs Health and the National Survey of Children with Special Health Care Needs. The National Survey of Childrenâs Health showed an increase in prevalence of speech and language disorders from 3.8 percent in 2007 to 4.8 percent in 2011, a 26 percent increase. The National Survey of Children with Special Health Care Needs showed an increase in prevalence from 3.2Â percent in 2005-2006 to 5.0 percent in 2009-2010, an increase of 56 percent. Although not a direct comparison, the committee reviewed data on initial SSI allowances for speech and language disorders for two points in time to determine the percent increase in those initial allowances.2 The number of initial allowances for speech and language disorders increased by nearly 40Â percent between 2007 and 2011 (from 21,135 to 29,309). 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 those causes are known. The evi- dence shows a variety of known etiologies (e.g., cleft palate, congenital brain tumors, and genetic disorders) and potential risk factors (e.g., toxic exposures, nutritional deficiencies, and injuries), as well as the common comorbidities noted earlier (e.g., autism spectrum disorder and attention deficit hyperactivity disorder). In some cases, the cause may not be known. A range of strategies are used to treat mild, moderate, and severe speech and language disorders in children. In its review of the evidence, the committee found that with treatment, mild speech and language disor- ders 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, howeverâeven with treatmentâcore speech and language deficits will likely continue into adolescence and may be lifelong. Therefore, the committee concluded that 2â Initial allowances are the total number of new cases within any given period of time of children found to be eligible for disability benefits based on both the financial and the dis- ability criteria.
SUMMARY 11 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 Participants in the Supplemental Security Income Program To identify trends among participants in the SSI program, the commit- tee reviewed administrative data collected by the SSA on initial allowances and recipients3 for primary speech and language impairments. Between 2004 and 2014, the total number of children receiving benefits for speech and language disorders increased from 90,281 to 315,523, a 249 percent increase. The committee reviewed older data to help explain this substantial growth in the total number of recipients. At the committeeâs request, the SSA provided supplemental data for review beginning in 1994, the year in which the primary impairment code for speech and language impairments (3153) was introduced. From this review, the committee 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: â¢ he introduction of a new impairment code for speech and t language disorders in 1994, and â¢ he continuing eligibility of children whose severe speech and t language disorders persist throughout childhood. Prior to 1994, there were zero initial allowances for the impairment code for speech and language disorders 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 persistence of severe speech and language disorders. Thus, the increase in the number of annual initial allowances leads to a much larger percent increase in the total number of recipients over time, 3â Recipients refer to the current number of children receiving SSI benefits.
12 SPEECH AND LANGUAGE DISORDERS IN CHILDREN because once qualified for SSI, few children with severe speech and language disorders subsequently become ineligible for the program. Several additional factors contribute to the changes observed in the number of children receiving SSI benefits for speech and language disorders. For example, the total number of child SSI recipients fluctuates depending on the number of initial allowances, terminations, suspensions, and reen- tries from suspension. When the number of allowances exceeds the number of terminations and suspensions in 1 year, the total number of recipients increases for that year. Overall growth in the population of children would be expected to contribute some growth in the program as well. In addition to severity, a statutory condition of eligibility for SSI is either duration or death. Therefore, children with speech and language disorders who qualify for SSI will continue to have a severe speech and language disorder, and unless their eligibility changes for some other reason, they will not exit the program before they reach 18 years of age. 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 SSAâs financial eligibility criteria. By contrast, during periods of economic downturnâfor example, during the recent recessionâmore children will meet the financial eligibility criteria of the program because of relatively higher unemployment. CONCLUSION The evidence presented in this report underscores the long-term and profound impact of severe speech and language disorders on children and their families. It also helps explain 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 financial assistance to families of children with the severest disabilities. It is the committeeâs hope that this report will make a substantial contribution to understanding the nature of severe speech and language disorders in children and provide a strong foundation for future efforts in policy, practice, and research. The committeeâs findings and conclusions characterize the current state of knowledge. Its findings also highlight the challenges that arise in under- taking a close examination of childrenâs health status in the area of speech and language because of deficiencies in the evidence both across the general population and, in this case, the specific population of children enrolled in the SSI program. Despite its limitations, the evidence presented in this report offers valuable insight into the relationship between children with speech and language disorders in the general population and those partici- pating in the SSI program. Furthermore, the evidence presented here can assist policy makers, health and education professionals, and SSI program
SUMMARY 13 administrators in understanding the extent to which the SSI programâs basic design and administrative process operate together to connect the nationâs most severely impaired and disadvantaged children with speech and lan- guage disorders to the benefits that program offers. REFERENCE NASEM (National Academies of Sciences, Engineering, and Medicine). 2015. Mental disorders and disabilities among low-income children. Washington, DC: The National Academies Press.