Although the general public in the United States assumes that children generally are healthy and thriving, a substantial and growing number of children have been diagnosed with at least one chronic health condition. Many of these persistent or long-lasting conditions are mild and do not significantly affect the child’s ability to develop age-appropriate skills or complete the expected and preferred activities of daily life. On the other hand, many such conditions are associated with disabilities that interfere regularly with children’s usual activities, such as play or leisure activities, attending school, family or community activities, and routine activities of daily living. Furthermore, some conditions interfere with developmental processes and the attainment of functional skills such that the person’s disability will be lifelong. In their most severe forms, then, such conditions represent serious lifelong threats to long-term health, functioning, well-being, and anticipated outcomes in such facets of life as employment and independent living. Although many of these conditions have no cure, the associated disability may to some extent be mitigated by interventions and supports.
The precise number of U.S. children who have a disability is exceedingly difficult to enumerate because of the inconsistent definitions of what constitutes a disability used by various national data collection sources. Even given these disparate definitions, however, these sources do confirm that childhood disabilities are prevalent and largely increasing (Halfon et al., 2012; Perrin et al., 2007).
In this context, the Social Security Administration (SSA) requested that the National Academies of Sciences, Engineering, and Medicine convene a committee of relevant experts to produce a comprehensive report on programs and services aimed at improving health outcomes for school-aged children with disabilities (see Box 1-1 for the committee’s full Statement of Task). Of note, SSA did not request a focus exclusive to children eligible
within the scope of that agency’s narrow program parameters.1 Thus, to fulfill its Statement of Task, the Committee on Improving Health Outcomes for Children with Disabilities was charged with reviewing and assessing a broad range of programs, services, and supports available to children with disabilities; describing characteristics that contribute to the effectiveness of such programs, services, and supports; identifying their gaps and limitations; and providing findings and conclusions that can inform future policy, practice, and research to improve health outcomes for children with disabilities and inform decisions about SSA involvement and future research efforts. The 16-member committee included experts in the areas of pediatric and adolescent medicine, mental health, speech and language, occupational therapy and rehabilitation, education, social work, disability law, health policy, and economics. This report presents the results of the committee’s efforts.
While this report is the National Academies’ first examination of programs and services available to children with disabilities, the National Academies has a long history of studying issues related to disability in children and adults and SSA’s disability determination process. This study was requested by SSA following the completion of two recent National Academies studies: Mental Disorders and Disabilities Among Low-Income Children (NASEM, 2015) and Speech and Language Disorders in Children: Implications for the Social Security Administration’s Supplemental Security Income Program (NASEM, 2016b). These two reports provide detailed information on how the Supplemental Security Income (SSI) program for children and youth is operationalized; the numbers of children diagnosed with specified disabilities receiving SSI; and how these numbers compare with evidence of rising rates of these conditions in the general population, especially among children living in poverty. Living in a low-income household is a requirement for SSI eligibility, plus a major risk factor for poor health. The committees responsible for each of the above reports concluded that the increasing numbers of children with these disabilities receiving SSI appear to parallel increases in these conditions in the general population. Given the scope and recent release of these reports, the committee drew on those prior efforts as background for this study, but avoided duplicating the robust prevalence and trend data from those important reports. Along with this earlier work of the National Academies, moreover, the committee drew important lessons from the body of data and research aimed at identifying trends in the prevalence and persistence of childhood mental health
1 To be eligible for Supplemental Security Income (SSI), children must have an impairment that results in marked and severe functional limitations and reside in a low-income household. SSA’s definition of childhood disability is discussed further in Chapter 2, and the SSI program is discussed further in Chapter 4.
disorders and speech and language disorders, and addressed diagnosis and treatment of and levels of impairment associated with these conditions.
In addition to drawing on the National Academies’ earlier work,2 the committee conducted an extensive review of the literature on childhood disability and the wide range of health conditions associated with disability. Furthermore, the committee reviewed the available literature on programs and services available to children in the United States intended to ameliorate disability. This review began with an English-language search of online databases, including Scopus, Web of Science, and ProQuest (ERIC, PsycInfo, PsycArticles, Sociological Abstracts, and Social Services Abstracts). Committee members and project staff identified additional references using traditional academic research methods and online searches throughout the course of the study. The committee received additional information from other sources as well, as documented in the public access file for this study.3
The committee met in person six times. These meetings included three public information-gathering sessions held to hear from invited experts in areas pertinent to the study. Agendas for the public meetings are included in Appendix A.
From its inception, the committee recognized the difficulty of addressing such a broad scope of work as that identified in its Statement of Task (see Box 1-1). The committee was asked specifically to consider “school-aged children with disabilities, including youth as they transition from high school to the workplace or higher education.” Because traditional ages of transition to independence (i.e., 18 or 21) may not be applicable for all children, the committee also decided to focus on young adults (≤25 years) when appropriate. This decision was based on recent studies reporting that all youth, including those with disabilities, continue developing the skills needed for independent adulthood into their 20s (Cauffman et al., 2010;
2 Earlier recent reports include The Dynamics of Disability: Measuring and Monitoring Disability for Social Security Programs (IOM and NRC, 2002), The Future of Disability in America (IOM, 2007b), Improving the Social Security Disability Decision Process (IOM, 2007a), HIV and Disability: Updating the Social Security Listings (IOM, 2010b), Cardiovascular Disability: Updating the Social Security Listings (IOM, 2010a), Psychological Testing in the Service of Disability Determination (IOM, 2015), Improving the Social Security Representative Payee Program: Serving Beneficiaries and Minimizing Misuse (NRC, 2007), Informing Social Security’s Process for Financial Capability Determination (NASEM, 2016a), and The Promise of Assistive Technology to Enhance Activity and Work Participation (NASEM, 2017).
3 See http://www8.nationalacademies.org/cp/projectview.aspx?key=49812 (accessed April 7, 2018).
Larson, 2000). Furthermore, various public programs are legally mandated to provide services up to different ages (e.g., age 18 for SSI before the transition to adult status, or high school graduation or the end of the school year when the student reaches age 21 for school-based services). The committee also noted that transitions during these ages include those involving health care providers (i.e., pediatric to adult providers).
SSA also asked the committee to focus “especially [on] the most commonly occurring disabilities4 in children who receive SSI or may qualify for SSI.” Accordingly, the committee gave special attention to children with severe mental health and speech and language disabilities, as well as the interactions between poverty and childhood disability and programs and services targeted specifically at these populations. However, the committee did not interpret this part of its statement of task as limiting its focus to children who receive or may qualify for SSI. Although the committee recognizes the great impact of poverty on children’s health and disability (discussed further in Chapter 2), it also recognizes that all children with disabilities and their families, regardless of income level, do in fact face many of the same challenges and struggles. In this report, then, the committee examines programs and services for the broader population of children with disabilities.
Specific conditions that often lead to disability are discussed throughout this report; however, to examine the consequences of diverse medical, behavioral, and cognitive disorders broadly and not through diagnostic labels, the committee applied a noncategorical (i.e., non-disease-specific) approach to addressing disability (Stein et al., 1993). Such noncategorical classifications have become increasingly important in service planning and in determining program eligibility for federal programs and state child health insurance plans since children with disabilities, while diverse, share many of the same needs.
For this study, the committee examined large-scale programs that help children with disabilities access the services they need to achieve improved health and functional outcomes. At its first meeting, the committee sought to clarify with SSA representatives the scope of its statement of task (see Box 1-1). Based on these discussions, the committee determined that the following topics were beyond the scope of this study.
First, this report does not provide an in-depth examination of specific pharmaceutical interventions, medical or surgical treatments, or individual educational/behavioral interventions for each condition or disability. Instead, SSA asked the committee to focus on service delivery and the
4 The committee interprets “most commonly occurring disabilities” to mean the commonly occurring health conditions associated with disabilities as they are usually documented for the provision of services.
programs and policies that support the delivery of effective treatments and social and educational interventions.
Furthermore, the committee did not examine programs and services for preschool-aged children, an age that lies beyond the scope of its charge (see Box 1-1). The committee accepted this as a way of narrowing the scope of its review, but also acknowledges that many of the most effective interventions occur early in life and that such interventions can have a large impact on later development and outcomes (Halfon et al., 2012).
Additionally, it was beyond the scope of this study to provide a comprehensive summary of every service and program available to children with disabilities. However, in its data collection efforts, the committee did review as examples of broader intervention approaches some selected smaller-scale programs that have been evaluated and for which outcome data have been disseminated. In many cases, the available evidence suggests that these are promising programs. The committee attempted to address all of the “specific considerations” identified in its statement of task, and when information salient to these matters was available, it is provided. It should be noted, however, that evidence on some specific program characteristics, such as marketing and outreach efforts, is limited.
Finally, as specified in its statement of task (see Box 1-1), the committee was tasked only with providing findings and conclusions based on the evidence it gathered; SSA did not ask that the committee provide recommendations to its sponsor for this study. At the committee’s first meeting, SSA confirmed that recommendations were not to be included in this report.
Describing the myriad of programs and services potentially available to children with a range of disabilities presented the committee with a daunting challenge. Children with disabilities and their families are potentially served by many highly specific programs and services, from large-scale, federal programs such as Medicaid and SSI to both publicly and privately funded state, regional, and local programs. More than a decade ago, the Government Accountability Office (GAO) compiled a list of nearly 200 disability-related programs at the federal level alone (GAO, 2005). Some of these programs serve small numbers of children or target children with specific disabilities, such as blindness, or serve narrowly identified populations, such as children with disabilities whose parents serve in the military. Most of the programs listed are small, have very narrow eligibility, and are not specifically focused on children.
To ensure that this report would address the statement of task for this study and that the findings and conclusions presented would help inform SSA’s future research efforts, the committee developed criteria with which to refine the list of programs and services included herein. Based on those criteria, this report includes programs and services that
- are designed to serve large numbers of children with disabilities;
- are large-scale programs or services that are relevant or important for children with disabilities;
- have been evaluated and for which outcome data have been disseminated; or
- have policy implications for influencing outcomes of large groups of children with disabilities.
Applying these criteria, the committee focused on large-scale programs while recognizing that even national programs may differ substantially by state or local site because of variations in implementation. The committee also identified several small-scale or regional programs and services that serve as exemplars, focusing on those with the most evaluation and evidence. For example, disability-specific summer camps; adaptive sport and fitness programs; and dance, art, and music therapy programs have been demonstrated to be effective examples for some groups of children with disabilities. However, these initiatives have many variations, and the committee acknowledges these limitations in addressing the universe of programs. In some cases, the committee focused on categories of programs rather than individual programs because it identified a large number of individual programs that could be categorized more generally.
It is important to acknowledge that there is no universally accepted definition of childhood disability. Clinicians, researchers, agencies, service providers, and people with disabilities may use different conceptual frameworks to understand disability and have different operational definitions of disability for program inclusion, classification, and monitoring purposes (various definitions of disability are discussed in Chapter 2). This report addresses health and functioning outcomes of children with disabilities, thus requiring an examination of both health and disability. These domains are highly interrelated: A health condition in interaction with various factors can lead to disability, and characteristics of disability can exacerbate or lead to other health conditions. As examples, a child with the neurological condition of cerebral palsy (health condition) may be unable to walk and require a wheelchair for mobility (disability). Alternatively, a child with a spinal cord injury who uses a wheelchair for mobility (disability) is at high risk for pressure sores that require medical treatment (health condition). From broader developmental and educational perspectives, disabilities can have serious implications for learning and functioning across the life span. Because of these complexities and long-term impacts, this report includes
information on a variety of severe disabilities and the range of health conditions associated with disabilities.
Contemporary conceptualizations of childhood disability advance the idea that the nature and severity of disability are defined not only by underlying medical conditions but also by the physical environment, demands, expectations, opportunities, and social roles that children assume in their daily lives. To address health outcomes for school-aged children with disabilities comprehensively, then, the committee used a working definition of childhood disability that highlights the changing expectations of skill and role development as children age, aligned with the 2004 report Children’s Health, the Nation’s Wealth: Assessing and Improving Child Health (NRC and IOM, 2004), the United Nations definition of disability, and the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) (Dahl, 2002; Stucki et al., 2007; WHO, 2001). The committee’s working definitions of children’s health and childhood disability are shown in Box 1-2.
The breadth of health conditions and disability typologies requires a wide variety of services to meet the needs of children with disabilities and their families. Needed services include primary health care, specialty health services, hospital care, mental health services, special education, family supports, community-based services, rehabilitation services (e.g., physical therapy, speech therapy, occupational therapy), and support for transitioning from school to work. These services can greatly influence the health and well-being of children with disabilities, yet the array and provision of these services vary substantially and often lack connection within and across service sectors. Families must be sophisticated in managing the complex
network of services required for the care of children with disabilities, and programs and services that include parents as supports for intervention with children are included in this report.
This report presents the results of the committee’s efforts to respond to the task objectives set forth by SSA. Chapters 2 and 3 lay the groundwork for the committee’s review of programs and services for children with disabilities, presented in Chapters 4, 5, and 6. Based on this review, the committee’s overall conclusions are presented in Chapter 7.
Chapter 2 of this report conceptualizes childhood disability. The chapter begins with a review of operational definitions of disability and related topics, highlighting how federal programs and national surveys variably define childhood disability to coincide with their specific purposes and how this complicates understanding of the prevalence of childhood disability in the United States. Operational definitions discussed include those used by federal programs (SSI, the Individuals with Disabilities Education Act [IDEA], and the Maternal and Child Health Bureau [MCHB]) and by national surveys (i.e., National Health Interview Survey, National Survey of Children’s Health, and American Community Survey). Next, the chapter examines contemporary conceptualizations of childhood disability based on a biopsychosocial model (i.e., ICF) and presents the committee’s conceptualization of disability for the purposes of this report, which, building on the biopsychosocial model of disability, highlights that
- personal characteristics and social-environmental factors shape the child’s and family’s need for programs and services;
- programs and services impact the child and family, personal characteristics, and environmental factors and shape near- and long-term health and functioning outcomes; and
- outcomes affect the child’s personal and social-environmental factors, shaping the need for and influencing the impact of subsequent services.
This section also includes a discussion seminal to this study: the need for a life course perspective on childhood disability and the importance of personal, social, and environmental factors in understanding and addressing the needs of children with disabilities. Personal, social, and environmental factors explored include severity of impairment, presence of and increased risk for comorbidities, parenting and the child’s family, socioeconomic status, service availability and accessibility, abuse and neglect, bullying, perceived stigma, and interactions with juvenile justice. Chapter 2 concludes
with three case studies portraying the medical complexity and comorbidities experienced by many children with disabilities and the nature of the services they require.
To examine the effectiveness of programs and services for children with disabilities, the committee first addressed a fundamental question: What do successful health and functioning outcomes look like? Chapter 3 focuses on characteristics of successful health and functioning outcomes across two primary domains: health and social and human capital development. For the purposes of this report, the term health outcomes refers to physical and mental health outcomes directly related to the child’s health conditions (disorders or illnesses of body systems that are conventionally measured in health care settings). Accordingly, outcomes in this domain focus primarily on those related to impairments of body structures and body functions. Social and human capital development outcomes encompass seven outcome domains spanning the child’s life from school entry through the transition to adulthood: education, skills for daily living, communication and social skills, employment and earnings, community participation, self-determination, and independent living. Optimal outcomes in each domain and potential indicators for measuring progress are described.
Chapters 4, 5, and 6, respectively, explore evidence-based and promising health programs and services, school-based social and human capital development programs and services, and other community-based and federal social and human capital development programs and services that support children and youth with disabilities and their families. These categories of programs and policies work together to achieve similar, overlapping outcomes. Because they are often housed and funded in distinct silos, however, the levers of program and policy change are often separated as well, and they are therefore addressed in separate chapters.
Children with disabilities must often rely on multiple service providers across varying settings who provide an array of needed health care services—the focus of Chapter 4. The chapter begins with a discussion of today’s often fragmented and highly variable landscape of health care service delivery, examining home- and community-based services, hospital-based care and clinical programs, subspecialty outpatient care programs, patient-centered medical home models, and telehealth service delivery models. It then turns to an examination of specialized health care services often needed by children with disabilities and their families across five primary domains: habilitation and rehabilitation, assistive technologies, mental and behavioral health care, health promotion, and supporting the transition from pediatric to adult health care. The chapter concludes with a discussion of programs that support access to and quality of health care services and programs for children with disabilities. These include public health insurance programs (Medicaid and the Children’s Health Insurance Program),
federal executive agency programs (MCHB, Centers for Disease Control and Prevention [CDC], and Substance Abuse and Mental Health Services Administration [SAMHSA]), and cross-disciplinary partnerships for research and training (University Centers for Excellence in Developmental Disabilities Education, Research, and Service [UCEDDs] and Leadership Education in Neurodevelopmental and Related Disabilities [LEND]).
Beyond health care programs and services, children with disabilities and their families often need a wide variety of additional supports and services from other sectors that influence a child’s social and human capital development outcomes. In Chapter 5, the committee explores school-based services and supports that are intended to create supportive school and community contexts and promote capacity development in students with disabilities and their families by teaching skills—including academic, daily living, and social skills—and providing necessary supports for the expression of skills. The chapter begins with a discussion of the educational landscape for children with disabilities, guided primarily by IDEA and to a lesser but still significant extent Section 504 of the Rehabilitation Act, and provides an overview of the impacts of charter schools and school voucher programs on children with disabilities and their families. Next, special education services (as outlined in IDEA)—inclusive education, specially designed instruction, supplementary aids and services, and related services and supports—are examined. The chapter concludes with a discussion of school-based services that help prepare children for transitioning to adulthood—highlighting the importance of student involvement in transition planning and increasing self-determination—and support long-term goals of employment, community participation, and independent living.
The committee’s examination of programs and services that influence a child’s social and human capital development continues in Chapter 6, which expands to those outside of the school system. The chapter begins with a discussion of vocational rehabilitation and pre-employment services, highlighting the importance of the Workforce Innovation and Opportunity Act (WIOA) in providing opportunities for youth with disabilities to gain necessary skills for securing competitive employment. A number of promising programs and services to help youth transition to employment after they leave school—Youth Transition Demonstration, National Job Corps Study, Promoting the Readiness of Minors in SSI, Transition Work-Based Learning Model Demonstrations, Substantial Gainful Activity, Project SEARCH, Think College, CareerACCESS, Pathways to Careers, and pre-employment transition services—are discussed. Next, the chapter examines programs and services that support independent living and community integration (Administration for Community Living programs, Centers for Independent Living, State Councils on Developmental Disability), including federal housing support programs (Money Follows the Person Rebalancing
Demonstration Grant program, Section 811 Supportive Housing for Persons with Disabilities, McKinney Homeless Assistance Act, Special Needs Housing Trust Fund). Then, the chapter highlights programs and services that advocate for the rights of children with disabilities and their families and provide assistance in accessing needed programs and services (State Protection and Advocacy Systems, National Council on Independent Living, the Arc, Council of Parent Attorneys and Advocates, medical–legal partnerships). Finally, because of the bidirectional relationship between childhood disability and family socioeconomic status, the chapter concludes with a discussion of economic support programs (SSI, Temporary Assistance for Needy Families) that provide vital cash supports to help children with disabilities and their families meet additional needs not met by other programs and services.
Based on the review of programs and services for children with disabilities presented throughout the report, Chapter 7 presents the committee’s conclusions. This chapter first reiterates the committee’s chapter-specific conclusions from Chapters 3 through 6, followed by a set of 12 overall conclusions in four primary domains aligned with the committee’s statement of task. The report provides one conclusion on characteristics that contribute to the effectiveness of programs and services, two conclusions on gaps and limitations, six conclusions on opportunities for improving the provision of services and supports to children with disabilities and their families, and three conclusions on opportunities for improving the collection and sharing of data and informing future research efforts. The text accompanying each conclusion provides potential opportunities for SSA and/or other federal, state, local, and private involvement to help improve programs and services for children with disabilities and their families.
Finally, five appendixes are included: Appendix A contains the agendas from the committee’s public meetings; Appendix B provides a glossary of commonly used terms associated with this study; Appendix C presents more information on the data sources/surveys used by the committee; Appendix D offers a more detailed history of legislative initiatives from which federal and state programs addressing disabilities originated; and Appendix E provides the committee members’ biographies.
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NASEM (National Academies of Sciences, Engineering, and Medicine). 2015. Mental disorders and disabilities among low-income children. Washington, DC: The National Academies Press.
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NASEM. 2017. The promise of assistive technology to enhance activity and work participation. Washington, DC: The National Academies Press.
NRC (National Research Council). 2007. Improving the Social Security Representative Payee Program: Serving beneficiaries and minimizing misuse. Washington, DC: The National Academies Press.
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