7

Conclusions

This report reviews an array of programs and services across multiple sectors that exist to support the health and functional needs of children and youth with disabilities. A wide range of programs and services is necessary given the varied needs of the population of children with disabilities, including those who receive or may qualify for Supplemental Security Income (SSI) benefits. Many national, state, and local programs—a number of which are highlighted in this report—offer a variety of services that allow eligible children and youth with disabilities and their families to function and meet their support needs.

In this report, the committee was charged with four tasks:

1. Identify and describe programs and services aimed at improving health and functioning outcomes for school-aged children with disabilities.
2. Describe the characteristics that contribute to the effectiveness of the programs and services for this population.
3. Identify the gaps and limitations of these programs and services.
4. Provide findings and conclusions that can inform decisions about Social Security Administration (SSA) involvement and future research efforts.

This chapter first reiterates the committee’s chapter-specific conclusions from Chapters 3 through 6, and then presents a set of 12 overall

conclusions¹ addressing tasks 2 through 4 above. The committee’s overall conclusions are separated into four primary domains: characteristics that contribute to the effectiveness of programs and services (one conclusion); gaps and limitations in access to and quality of programs and services and in data and research (two conclusions); opportunities for improving the provision of services and supports to children with disabilities and their families (six conclusions); and opportunities for improving the collection and sharing of data, inspiring a culture of innovation, and informing future research efforts (three conclusions). In the text accompanying each conclusion, potential opportunities for SSA involvement, as well as involvement of other federal, state, local, and private entities, are provided. The final set of conclusions, on data, innovation, and future research efforts, provides the greatest opportunities for SSA involvement—as the lead agency and/or in collaboration with other federal, state, and local agencies—to help improve programs and services for children with disabilities and their families.

CHAPTER-SPECIFIC CONCLUSIONS

Before addressing each of the above tasks, the committee deemed it essential to answer two questions. The first—What is childhood disability?—is addressed in Chapter 2, providing context for this report. In Chapter 2, the committee conceptualizes childhood disability, reviewing federal definitions of disability and related concepts, exploring contemporary notions of disability, discussing the need for a life course perspective, and examining the impact of personal and social-environmental factors on childhood disability. As discussed in Chapter 2 and highlighted throughout the report, it is necessary to recognize the significant role the family plays in impacting child health and functional outcomes. It is also important once again to acknowledge that the meaning of family can be highly variable and fluid for many children, especially children with disabilities. Accordingly, services and programs that support families of children with disabilities need to reflect recognition of the unique needs that may be associated with nontraditional family units and caregivers, such as grandparents, foster parents, or other nontraditional caregivers.

The second of these questions—What do successful health and functioning outcomes look like?—is addressed in Chapter 3, which examines

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¹ The committee’s overall conclusions presented in this chapter draw upon the evidence and data presented throughout the report. Accordingly, it is important to note that while examples are provided throughout this chapter, representing here all of the evidence upon which the committee’s conclusions are based would be duplicative, and readers seeking additional information are directed back to the preceding chapters. Where the provision of additional information not previously discussed in the report is warranted (e.g., in the section on gaps and limitations), supporting references and data are provided.

optimal health and functioning outcomes across a variety of relevant domains throughout childhood and into young adulthood. The committee identified a number of outcome domains on which programs and services for children with disabilities need to focus to improve health and functioning outcomes. Optimizing physical and mental health is an overarching goal of many programs and services for children with disabilities. For the purposes of this report, the term health outcomes refers to both physical and mental health outcomes, unless otherwise stated. In addition to health outcomes, the committee identified six other salient outcomes under the umbrella of social and human capital development, which may be further delineated by the period of childhood during which they are generally targeted. These include the development of skills during early and middle childhood that serve as the building blocks for improving long-term outcomes across three domains: (1) education (including skills needed to transition successfully from education into adult life), (2) daily living skills, and (3) communication and social skills. During adolescence, children with disabilities reach a particularly salient period of life as they prepare to transition to adulthood. The committee identified four primary outcome domains related to this transition that are influenced by the successful attainment of these building-block skills: (1) employment and earnings, (2) community participation, (3) self-determination, and (4) independent living. Based on its examination of health and functioning outcomes, the committee reached four conclusions (see Box 7-1).

Chapters 2 and 3 set the stage for the committee’s response to task 1 above. Chapters 4 through 6 review a number of programs and services across a variety of domains intended to improve health and functioning outcomes for children with disabilities. This review also provides information on selected exemplars of federal, state, and local programs and services and highlights evidence-based as well as promising and innovative approaches for ensuring access to and the provision of quality services.

In Chapter 4, the committee examines a wide variety of health care programs and services for children with disabilities and their families. The chapter examines the landscape of health care service delivery, highlighting the variety of ways children may access needed services and the nature of service delivery that often fails to be integrated. Following this, the committee reviews a number of specialized health care service domains often needed by children with disabilities and their families, including habilitative and rehabilitative services, mental and behavioral health care, health promotion, and assistive technology services. It is important to note again that although physical and mental health care services are often disconnected in practice, the committee strongly believes that the two sets of needs are intertwined; therefore, references to health care programs and/or services include both physical and mental health care, unless otherwise stated. The

chapter then describes federal programs that support access to and quality of health care services and programs, which are also not often intertwined. Based on its review of health care programs and services in Chapter 4, the committee reached five conclusions (see Box 7-2).

Chapter 5 focuses on school-based programs and services for social and human capital development. The chapter first explores the landscape of educational services for children with disabilities, which is guided primarily by the Individuals with Disabilities Education Act (IDEA), and examines the impacts of charter schools and school voucher programs on children with disabilities and their families. It then explores special education services guaranteed by IDEA—inclusive education, specially designed instruction, supplementary aids and services, and related services and supports—as well as school-based transition services, also mandated by IDEA as part of the individualized education program (IEP) process. Based on its review of these programs and services, the committee reached four conclusions (see Box 7-3).

Finally, in Chapter 6, the committee explores additional programs and services outside of the school system that support social and human capital

development outcomes. Service domains explored in this chapter include vocational rehabilitation and pre-employment services, independent and integrated community living programs, advocacy programs, and economic support programs. Based on its review, the committee reached five conclusions (see Box 7-4).

CHARACTERISTICS THAT CONTRIBUTE TO THE EFFECTIVENESS OF PROGRAMS AND SERVICES

To achieve positive outcomes, children with disabilities need strong, positive support networks, including the child’s family (or other responsible adults); health care providers; teachers, related service providers, and other school faculty; therapists; peers (with and without disabilities); and advocates. It is important that programs and services help bring together the various individuals who support the child to ensure that all are working toward similar goals. Such supportive relationships can help children with disabilities and their families navigate the wide variety of health, education, and community-based services they may require. Perhaps more importantly, they help develop a working alliance among the child, his or her family, and service providers, where both the child and the family believe the provider has the child’s best interests at heart.

Because children with disabilities are often highly dependent on their families, who play a critical role in supporting them in developmentally appropriate ways, it is important as well to recognize the centrality of the child and her or his family in improving health and functioning outcomes and to engage the child, and her or his family when appropriate, in the child’s care. Ensuring that children and families are full partners in critical discussions, decisions, planning, and care processes is essential to providing effective services for children with disabilities. Providing individualized

services and supports that take into account both the child’s and family’s needs, strengths and weaknesses, and interests is important in this endeavor.

Because caring for a child with a disability can have extensive and profound impacts on a family’s physical, social, financial, and emotional resources, it is also important that programs and services for children with disabilities recognize the unique stressors and competing needs of their families, and provide ways to support families (or deliver services to families conjointly) when appropriate. Family supports include increasing child and family health literacy; ensuring that children and families know what programs and services are available to them; creating peer networks for social, emotional, and physical support; and providing monetary supports that help the child and the family access programs and services that might otherwise not be available to the child, such as acquiring durable medical equipment. To ensure families’ ability to care for a child with a disability, it is also important that family supports be available that attend to the health needs of caregivers, addressing such issues as stress reduction, self-care, and mental health.

A life course perspective posits that health and disability develop over time, shaped continuously by events and environmental factors as the child grows and develops. During childhood, there are certain critical points of transition wherein trajectories may be particularly impacted, including the young child’s transition from preschool to school and, of particular salience to this report, the transition from high school to postsecondary education and/or the workforce (Halfon and Forrest, 2017). Throughout childhood, it is important that specific, age-appropriate goals be identified, with the child and his or her family playing a key role as partners in this process. Once goals have been identified, it is important to track and evaluate progress toward meeting those goals, and regularly review and update the goals based on the child’s progress and changing needs as she or he continues to develop. Near-term goals during early and middle childhood focus primarily on developing the skills and building the supports that maximize the child’s opportunities and abilities to navigate successfully into adulthood to the extent possible. Thus, the identification of goals during these developmental periods needs to take into account how such goals will contribute to successful long-term outcomes, including the development of skills for self-management of disability and self-advocacy, and the ability to handle new regulations; new expectations; new providers; new ambiguities; and increased responsibilities for navigating the array of available health, social, and human capital development programs and services as the child transitions to adult programs and services.

As highlighted in Chapters 4 through 6, children with disabilities and their families often need a wide array of services delivered across various domains. As demonstrated in Figure 2-3 in Chapter 2, children with

disabilities and their families must find ways to interact successfully with a wide variety of people, programs, and resources to ensure that the child remains healthy and strong. Providing children with disabilities with a usual source of care with at least one clinician who takes ownership of the child’s care and takes the time to make plans is therefore important to optimizing the child’s health, functioning, and quality of life.

Clinicians who take ownership of a child’s health and well-being often lead, organize, and manage the other members of the child’s care team. They take responsibility for troubleshooting and solving problems and issues with the child’s health. They repeatedly gather and process information on the child’s health to foresee and plan proactively for future health and life challenges (e.g., acute health crises, the development of new comorbid conditions, difficult treatment decisions) that each child is likely to encounter. Ultimately, they strive for the child’s health care to be coordinated across team members, with roles, responsibilities, and duties explicitly articulated, affirmed, and executed in concert.

Programs and services that help children and their families navigate and connect with the multiple, complex service sectors intended to meet their multifaceted needs through service coordination are important to children with disabilities and their families. The patient-centered medical home model, described in Chapter 4, represents clear efforts within the health sector to provide coordination of and access to comprehensive health care services for children with disabilities. Similarly, large-scale demonstration projects focused on coordination of programs and services for transition-age youth with disabilities, such as the Promoting Readiness of Minors in Supplementary Security Income (PROMISE) initiative, are currently under way. Beyond coordination, collaboration among agencies, organizations, providers, and others, within and across silos, encourages the integration of existing services and the creation of new programs and services to support the health and functional needs of children with disabilities and their families.

To ensure the effectiveness of programs and services in improving outcomes, it is important that they be evaluated, especially in relation to their impact on health and functioning outcomes; that successes and challenges be identified; and that future interventions be based on the results of ongoing evaluation. Accordingly, it is important that programs and services engage in rigorous quality control evaluation, including regular systematic evaluation and continuous improvement.

The committee’s second task objective was to “describe the characteristics that contribute to the effectiveness of the programs and services for [school-aged children with disabilities].” To guide its work, the committee adopted Halfon and colleagues’ (2012) definition of childhood disability as “an environmentally contextualized health-related limitation in a child’s

existing or emergent capacity to perform developmentally appropriate activities and participate, as desired, in society.” Importantly, this definition highlights the changing expectations of skill and role development for children as they age, as well as the understanding that whether and to what extent an illness or impairment may lead to disability is also dependent on a number of personal, social, and environmental factors (as discussed in Chapter 2). Furthermore, when gaps continue to exist between the expectations of age-appropriate environments and child and family skills, the provision of effective supports becomes central to the attainment of valued outcomes. Based on its review of programs and services and drawing on the evidence presented throughout this report, the committee concludes:

GAPS AND LIMITATIONS

In Chapters 4 through 6, the committee identifies and describes an array of programs and services available to children with disabilities and their families. These programs and services provide vital support and increase opportunities for optimal health and functioning outcomes; however, based on this review, the committee also identified many gaps and limitations in programs and services that may impede the ability of children with disabilities to attain optimal health and functioning outcomes. The gaps and limitations identified by the committee fall into two primary categories: (1) access to and quality of programs and services, and (2) data and research.

Access to and Quality of Programs and Services

Children with disabilities and their families may face many challenges with regard to accessing quality services. The reasons for these challenges are often attributable to a number of factors, including the child’s familial and social circumstances, the policy environment within which the child lives, the types of programs and services that are available and accessible, and the quality of care the child receives from his or her providers. Some proportion of children with disabilities will seek and receive services; in other words, they are able to access available services. A proportion of children with disabilities who have access to specialized services will achieve their optimal health, functional, and social outcomes by receiving quality care. Conceptually, a high-quality intervention is one that, when applied correctly and appropriately, results consistently in a higher probability of a desired outcome.

The term access refers broadly to whether an individual is able to secure the services that address a particular need. This concept implies two principal considerations—that the services necessary to address that need actually exist (i.e., that the services are available in the area in which the individual lives), and that the individual is able to utilize those available services (i.e., that the child and her or his family/guardian possess information, physical transportation, health insurance, and other elements necessary to receive these services). Inability to access needed programs and services has been demonstrated to be a persistent gap for children with disabilities.

The Maternal and Child Health Bureau (MCHB) identifies the ability to access community-based services easily² as one of six core outcomes for children with special health care needs. The 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN)³ found that

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² To successfully achieve this outcome, “families must have no difficulties or delays in getting services, and be only sometimes or never frustrated in efforts to get services” (DRC, 2011).

³ See https://mchb.hrsa.gov/cshcn0910/more/pdf/nscshcn0910.pdf (accessed April 9, 2018).

34.9 percent of this population did not meet the criteria for achieving this outcome, with the percentage of children not meeting the criteria increasing for children with more complex needs (43.6 percent) and children with one or more emotional, behavioral, or developmental issues (50.3 percent) (HHS et al., 2013). Reported barriers to accessing community-based services include difficulty getting an appointment (17.8 percent), the cost of care (14.9 percent), the geographical availability of services (11.2 percent), eligibility requirements (10.8 percent), and difficulty accessing needed information (9.0 percent) (DRC, 2011). The widespread inability of children with disabilities to access necessary mental health care services is particularly concerning. For example, recent estimates suggest only about 13–20 percent of children and adolescents with emotional disturbances receive some kind of mental health services in any given year (AACAP, 2016; CDC, 2013), and only a small fraction of them receive evaluation and treatment by child and adolescent psychiatrists.

However, access to services alone may not improve outcomes if there are issues with service quality. In relation to health care services, quality of care has been defined as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge” (IOM, 1990, p. 37). This definition directly links quality of care to outcomes; however, use of the term “desired health outcomes” is meant to reflect not only improvements in health status, but also consumer satisfaction and involvement in decision making (IOM, 1990). Because this report focuses on services and outcomes beyond those generally considered in the realm of health care, the committee adapted this definition for the purposes of this report. Quality, as defined by the committee, is the degree to which programs and services for individuals and populations increase the likelihood of desired health and functioning outcomes and are consistent with current professional knowledge. Based on its examination of programs and services across a variety of domains, the committee identified a number of gaps and limitations that affect the ability of children with disabilities and their families to access quality services and supports.

Personal and Familial Factors

Access to services may be limited by a variety of personal factors, including family characteristics and attributes, diversity and culture, and material poverty. Families are critical enablers of care for all children, and families of children with disabilities face certain unique constraints in their ability to secure services for children in their care. Families of children with disabilities experience greater levels of parental stress, are forced to navigate stigma and marginalization, face unique challenges to family functioning,

and confront difficult choices between workforce participation and caring for the child (Neely-Barnes and Dia, 2008). Socioeconomic disparities often faced by children with disabilities and their families can lead to additional challenges in accessing services, such as limited transportation options or a lack of child care for other children. Such familial challenges act as barriers to access for children with disabilities, and can affect treatment adherence and child outcomes.

The U.S. population is becoming increasingly diverse, and diversity can be a barrier to access when families have differing cultural understandings of disability and its management, have differing notions of help-seeking behavior and stigma, encounter health care that is alien to their prior experiences, and/or receive care that is not linguistically and culturally competent. For example, immigrants face additional challenges as they seek to access services for their children, including barriers related to enabling resources (such as citizenship and residency requirements for insurance coverage) or predisposing characteristics. New Americans may have cultural and health beliefs that vary from the dominant medical model when it comes to diagnosis, causation, and treatment—a phenomenon explored in the health classic The Spirit Catches You and You Fall Down (Fadiman, 1997). Service providers’ sensitivity to family culture and health beliefs is an important factor in ensuring access to services for children with disabilities.

Geographic Disparities

In the United States, health is a function not only of personal needs and family characteristics and attributes, but also of geography. The supply of providers and services varies widely among localities, states, and regions. Nationally representative studies have shown that children with special health care needs who live in rural communities experience a lack of access to pediatricians and face transportation barriers to care seeking. As a result, rural-dwelling children display higher levels of unmet need, their families are more likely to care for them at home, and this pattern of care increases financial hardship among families. For example, an analysis of National Survey of Children’s Health (NSCH) data by Robinson and colleagues (2017) found that a higher percentage of all children in small and large rural areas had parents who reported experiencing financial difficulties (i.e., difficulties meeting basic needs such as food and housing) compared with all children in urban areas. As discussed in detail in Chapter 2, such socioeconomic difficulties greatly affect the rates and severity of chronic health conditions and disabilities among children and impact their ability to access needed programs and services. Robinson and colleagues (2017) also found a higher prevalence of mental, behavioral, and developmental disorders (parent-reported) among children in small rural areas (18.6 percent) relative

to those in urban areas (15.2 percent). After adjusting for race/ethnicity and poverty among these children, those in rural areas more often had a parent with poor mental health and lived in low-resource neighborhoods compared with those in urban areas. Absent strategies to increase the health care workforce in rural communities and new care arrangements (such as rural health homes with care provided through telehealth networks), children with disabilities who reside in rural areas are likely to experience worse outcomes (Robinson et al., 2017).

Disparities have also been reported in participation rates for federal programs serving large numbers of children with disabilities across states, which may further exacerbate the urban versus rural differences noted above. For example, a previous National Academies committee found that in 2013, the percentage of children who received SSI benefits for a mental disorder ranged from 0.7 percent of children in low-income households in Hawaii to 5.3 percent of children in low-income households in Pennsylvania (NASEM, 2015). Although many potential factors that might contribute to such variation among states have been posited, that committee’s report notes that such variations “have not been closely studied and are not well understood” (p. 91) and that the differences “cannot be solely or substantially attributed to variation in the rates of mental disorders among states” (p. 103).

State Variation in Implementation of Federal Programs

Given that the implementation of many federal programs is left to the discretion of the states within certain defined boundaries, eligibility requirements—including what constitutes disability, age, and income level—can vary greatly. For example, the IDEA definition of a child with a disability lists 13 different disability categories under which a child may be found eligible for special education and related services; however, each state can add further detail to its special education laws that influences who is eligible for services.

Such variation is especially prominent in public health insurance programs that serve a great number of children with disabilities. For most Americans, access to health care is facilitated by private or public health insurance or in some cases, both. Health insurance coverage is known to be a highly effective mechanism for ensuring access to needed services. According to the most recent available data, from 2016, approximately 52.7 percent of children with special health care needs that are particularly complex (5.1 million of an estimated total 9.8 million children with special health care needs) rely partly or fully on Medicaid or the Children’s Health Insurance Program (CHIP) as their source of health insurance (DRC, 2016). However, states have wide latitude in determining eligibility requirements,

as well as administrative and budgetary control over Medicaid and CHIP programs. The result is great variability in who qualifies for the programs and disparate levels of spending and covered services across states, impacting the ability of children and families to access health care services and the quality of services across states.

Insufficient Workforce Capacity and Development

Access to and quality of supports for children with disabilities are also impacted greatly by numerous workforce capacity and development issues. The demand for services by children with disabilities far exceeds the number of trained personnel able to deliver such services. Many health-related fields (e.g., pediatric medicine, pediatric nursing, mental health, home health and personal assistance services) are experiencing shortages in the overall number of practitioners. Several pediatric subspecialties relevant to the care of youth with disabilities also face major shortages.

Workforce capacity issues are particularly salient in child and adolescent psychiatry; the American Academy of Child and Adolescent Psychiatry (AACAP) (2016) reported that, although more than 15 million children and adolescents would benefit from psychiatric services, there are currently only approximately 8,300 practicing child and adolescent psychiatrists in the United States, resulting in average wait times of 7.5 weeks. Additionally, 40 percent of the child and adolescent psychiatry workforce practices exclusively in cash-only private practices (NCBH, 2017), further limiting access to such services for many children with disabilities, who are more likely to live in low-income households. Similar shortages exist in the number of general and special education teachers (Boe, 2014; Cross, 2017). It is especially important to note the increased reliance on emergency teaching certifications for employing teachers who have not yet completed certification requirements to fill vacancies. For example, the Oklahoma State Department of Education has reported a nearly 4,500 percent increase in emergency teaching certifications issued between the 2011–2012 school year (32) and the 2017–2018 school year (1,429) (Eger, 2017).

Across sectors, practitioners often lack expertise on childhood disability and experience in working with children with disabilities. Most general education teachers are not adequately trained or highly qualified to teach academic content to children with disabilities (Rosenzweig, 2009). For example, one study found that preservice general education teachers at a large Midwestern university completed on average 1.54 courses in special education and/or inclusion during their college career, whereas preservice special education teachers completed on average 10.96 courses (Cameron and Cook, 2007). Although children with disabilities may still be able to access educational services, the quality of such services will likely suffer if

their teachers are inadequately prepared to meet their specific needs. The 2005 Surgeon General’s Call to Action to Improve the Health and Wellness of Persons with Disabilities reports that health care providers are often unprepared to engage in dialogue and shared decision making and are uncomfortable with or lack knowledge in discussing disabilities, and that cross-cultural gaps exist among providers, persons with intellectual and developmental disabilities, and caregivers (OSG, 2005).

Fragmentation of Services

Children and their families must navigate a range of services provided by different agencies and organizations, each of which differs with respect to eligibility criteria, time available, and funding streams. When programs and services are available to children with disabilities and their families, they are often highly fragmented and poorly coordinated, both within and across service sectors. Children with disabilities often experience multiple comorbidities, which may arise at different times during their development and vary over time, resulting in varying service needs throughout the child’s life. Fragmentation and a lack of coordination to overcome it contribute to poor outcomes for children with disabilities. This fragmentation is especially evident in insufficient support for the integration of mental health care with other pediatric health care domains. As noted earlier, the mental health services sector has historically been separated from physical health care. This separation results from the common perception that mental and physical health services are administered under separate guidelines and procedures and have different procedures for evaluating evidence. Integrated service models are gaining in popularity and professional support, with recent research examining various approaches (e.g., coordination, collocation, collaboration) to the integration of mental and physical health care. Nonetheless, information on the effects of such integration on child health outcomes remains limited, and this is an area that warrants further research. The large number of children not receiving needed mental health care services indicates that such integration is currently not widespread.

Although a wide variety of supports exist for children with disabilities, they are administered by different federal, state, and, in some cases, local entities. A significant challenge is that systems that serve children and youth, including those with disabilities, have evolved throughout history with differing funding mechanisms, service objectives, and outcome goals. There has never been an attempt to develop a more holistic set of supports. The result has been a fragmentation of supports, often with complex provider incentives for service delivery and individual incentives for pursuing services and supports.

Limited and Difficult-to-Access Information on Programs and Services for Children with Disabilities and Their Families

Despite the array of programs and services that may be available, children with disabilities and their families regularly experience difficulties accessing and understanding information about them, especially in regard to eligibility requirements and determinations. Furthermore, they are often unaware of many programs and services that are available. One federal program, IDEA, mandates that states identify, locate, and evaluate every child with a disability who may be entitled to programs and services, including home-schooled children and those enrolled in private schools (Lee, n.d.). Other major federal programs for which children with disabilities and their families may be eligible have no similar requirement.

A lack of formal outreach efforts may be one contributing factor, leaving children and families to discover available supports through informal means, often relying on family and friends. A review of pathways to the child SSI program across four states found that “family, friends, and neighbors were cited as the most important sources of referrals to the child SSI program, especially in states with larger child SSI caseloads” (HHS-ASPE, 2015, p. 2). However, that same review also showed substantial variation in the size of the SSI caseloads, so even though these frequent contacts are a source of information, the level of knowledge about SSI could vary substantially by geographic area. Several other secondary sources, including health care providers, special education staff, and targeted state programs, were also cited as referral sources, though to a lesser extent than family and friends. Legal aid organizations were examined as well, although the review found they were not a major source of referral to child SSI, instead focusing primarily on “applicants who were denied disability benefits, who had their benefits terminated, or were approaching the age-18 redetermination” (p. 7). The review found limited formal outreach efforts by SSI and three other social safety net programs—Temporary Assistance for Needy Families (TANF), the Supplemental Nutrition Assistance Program (SNAP), and Medicaid/CHIP—for which children with disabilities may be eligible.

A second potential factor limiting child and family knowledge about programs for which they may be eligible is that even when such information is available, it is often difficult to access and understand. This is true for not only children and families, but also for service providers who may serve as a secondary referral source. Often, service providers are not aware of existing programs that may be available to the child and family. Even when they are aware of such programs, they often do not fully understand how a program works or processes for accessing it. For example, the above review found that “the administrative rules and application processes for determining eligibility for the child SSI program are complex, and service

providers understandably often lack the knowledge of these rules and processes to assist households with an application” (HHS-ASPE, 2015, p. 9).

Lack of Preparedness for Transitioning to Adult Services and Programs

The impact of access barriers is heightened at times of transition, often leading to gaps in continuity of care. As illustrated by the cases presented in Chapter 2 and noted above, childhood disability and the resultant needs for services and supports change over time. At each point of transition, families must negotiate new service sectors, new regulations, new expectations, new providers, and new ambiguities as to what can and should be provided to the child. As the youth transitions to adulthood, responsibility for accessing necessary services and making care decisions often transfers partially or fully to the newly minted adult with a disability. Across service sectors and especially in health care (as discussed above), the lack of provider expertise and experience in working with children with disabilities is especially pronounced as children with disabilities transition into adult services.

Recent decades have seen increased focus on providing services and supports that encourage positive transitions from secondary education to postsecondary education or productive employment. However, much less attention has been given to assisting children, especially those with disabilities, in transitioning from pediatric to adult health care services.

For many children with disabilities, ensuring continuity of care as they transition to adulthood is complicated by variations in when the child “ages out” of particular programs or services (i.e., when eligibility for child services ends because of the child’s age). MCHB identifies the receipt of services needed for transition to adulthood as another core outcome for children with special health care needs.⁴ However, the 2016 NSCH found that only 16.5 percent⁵ of all adolescents (aged 12–17) with special health care needs met the criteria for this outcome. The percentage is even lower among children with more complex needs (15.7 percent⁶) or with one or more emotional, behavioral, or developmental issues (15.1 percent⁷). The

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⁴ “In order to meet the criteria for this measure, youth with special health care needs 12-17 years old must meet three components: 1) doctor spoke with child privately without an adult in the room during last preventive check-up; 2) if a discussion about transitioning to adult care was needed it must have happened; and 3) doctors actively worked with child to gain skills and understand changes in health care.”

⁵ See http://www.childhealthdata.org/browse/survey/results?q=4557&r=1 (accessed April 9, 2018).

⁶ See http://www.childhealthdata.org/browse/survey/results?q=4557&r=1&g=636 (accessed April 9, 2018).

⁷ See http://www.childhealthdata.org/browse/survey/results?q=4557&r=1&g=637 (accessed April 9, 2018).

transition to adult health care is further complicated by a number of factors, including the frequent lack of knowledge and training on issues related to childhood disability and lack of experience working with youth with disabilities among adult health care providers; aging out of services; gaps in access to health insurance; and practice differences between pediatric and adult health care, with adult health care often being perceived as less organized, lacking communication, and decreasing family involvement as compared with pediatric health care (Reiss et al., 2005).

For youth with mental health disabilities, one factor that complicates service delivery is the many funding streams, state-funded services, and ways of organizing treatment that are age-defined (Davis et al., 2009). Public mental health systems also are typically divided organizationally and fiscally between child and adult services, and eligibility criteria are often distinctly different for child and adult mental health services (Davis, 2003; Davis and Koroloff, 2006; Davis et al., 2006). Given the multiple systems from which youth with mental health disabilities may receive mental health care, disconnects in cross-sector connections—especially between child and adult services—can cause disruptions or redundancies in services, especially for 18- to 21-year-olds who may be involved with both child and adult services. Adult mental health services often fail to recognize the unique needs of young adults, and there are few interventions with strong evidence of efficacy for this age group (GAO, 2008; IOM and NRC, 2015). With the exception of interventions to treat early psychosis, few interventions have been devised specifically for this age group, and all are in early stages of development and testing (Davis et al., 2012). Thus at the important juncture between childhood and adulthood, when good mental health care is particularly critical, many aspects of the mental health care sector impede the provision of continued health care for youth with mental health disabilities.

Gaps in Continuity of Care

Continuity of care as individuals age out is dependent on access and strong connections to services from the adult sector. Across sectors, policies that define eligibility criteria or target populations for services are often distinctly different for children and adults, with adult criteria typically being narrower, producing a barrier to access based on changing age, not changing need. Aging out can also apply to health insurance coverage. For example, children in many states automatically qualify for Medicaid by meeting eligibility requirements for SSI. According to SSA, each year tens of thousands of child SSI recipients reach age 18, and their medical eligibility is redetermined according to adult disability standards (Hemmeter, 2012). Overall, about one-third of these children lose their SSI eligibility, although some may still be able to retain their Medicaid eligibility depending on their

state rules (Hemmeter, 2012). Among youth with mental health disorders that fall within the “other mental disorders” category (e.g., anxiety, affective, and disruptive behavior disorders)—who make up 28 percent of all children receiving SSI after reaching age 18—more than half (53 percent) lose eligibility upon redetermination (Hemmeter, 2012). Overall, these age-based criteria contribute to a higher risk of Medicaid disenrollment during young adulthood, even among highly vulnerable clinical populations (Davis et al., 2014; Pullman et al., 2010), and may contribute to reduced access to needed mental health care (Slade et al., 2014).

Data and Research

In addition to the gaps and limitations related to access to and quality of services discussed above, the committee’s review of programs and services revealed a number of gaps and limitations related to the availability of data on childhood disability and the evidence base for programs and services serving children with disabilities and their families. As discussed in Chapter 2, conceptual frameworks and definitions of disability vary widely across federal, state, and local programs; national surveys; and the research literature. Such variance leads to a number of difficulties, including pinpointing the prevalence of disability among children in the United States and evaluating the effectiveness of programs and services aimed at improving health and functioning outcomes for children with disabilities.

Available survey data on youth with disabilities indicate that many are falling far behind their peers. For example, special education students are more likely than their peers to be socioeconomically disadvantaged and to face problems with health, communication, and completing typical

tasks independently (Lipscomb et al., 2017). They are also more likely to struggle academically and have generally poorer prospects as they transition from secondary school. The outcomes for former child SSI recipients are particularly poor, as they have relatively high dropout rates, poor employment rates, and high arrest rates relative to their peers (Wittenburg, 2011). However, it is difficult to pinpoint the precise factors that might influence these outcomes or opportunities to improve services because of gaps in information on outcomes as the state and local levels. For example, several programs exist that provide information on program characteristics and general caseload counts of youth with disabilities. However, these data systems are often not connected to other programs and do not necessarily follow youth into adulthood. Hence, it is difficult to assess how many programs are “working.”

One challenge in tracking youth with disabilities is that definitions used by federal programs for children with disabilities vary substantially; the definitions are encoded within each program’s authorizing legislation, and few standards apply across programs and agencies. Given the differing legislative purposes, definitions of disability, and other eligibility requirements of federal programs, populations for which the programs collect data may differ significantly. For example, IDEA and SSI use their own categories to specify which children may be eligible for services, most of which are linked to specific conditions (e.g., speech-language disorder, autism spectrum disorder). Furthermore, strict severity and income requirements for SSI eligibility limit the population identified in SSA data to a much smaller subset of children relative to other sources, such as IDEA, which is available to all children with a qualifying disability regardless of family income level. Additionally, data collected by these programs generally relate specifically to eligibility requirements for the particular program and often do not provide accurate or comprehensive information about a child’s health and functioning status and support needs. As a result, additional data that would enhance information on children with disabilities, such as comorbidities, socioeconomic data, or demographic data, are often not collected.

In addition, no annual progress reports on the health and other outcomes of youth with disabilities exist. For example, while some agencies, such as the Bureau of Labor Statistics, regularly publish statistics on the employment rates of people with and without disabilities, no group or agency regularly submits reports tracking the national near- and long-term health and functional outcomes of children and youth with disabilities in SSI, Medicaid, special education, or other programs. Without such reporting systems, it is difficult to assess the impact of programs and policies on outcomes among children and youth with disabilities.

In contrast to the overall paucity of annual progress reports, several survey and administrative data sources provide a wide variety of

information on youth with disabilities. For example, Livermore and Roche (2011) identify 40 administrative and survey data sources that contain information on people with disabilities. These data sources provide important descriptive information and, in some cases, longitudinal information on outcomes into young adulthood. For example, the National Longitudinal Transition Study-2 (NLTS2) followed a national sample of students with disabilities aged 13–16 as they transitioned into adult roles from 2000 to 2009. Several studies have used a combination of survey and administrative data to examine the outcomes of former child SSI recipients into their young adult years (including variations in those outcomes across states) (Hemmeter et al., 2009, 2017). However, there is no systematic way to integrate these data sources.

Another challenge to addressing outcomes is that national surveys, such as the Survey of Income and Program Participation and National Health Interview Survey, tend to vary in how they define childhood disability and the types of questions used to determine whether a child has a disability. Some questions address limitations in activities of daily living or instrumental activities of daily living; others address the consequence of a disability (e.g., the use of an assistive device); and some identify disability based on the presence of a diagnosis considered to be disabling (e.g., intellectual disability, autism spectrum disorder, speech-language disorder). Other national sources of data on childhood disability use a similar strategy by analyzing medical insurance claims with diagnosis and treatment codes that indicate a disability. Some follow-up studies, such as the NLTS2, have used educational disability categories as defined by federal special education laws. Another important limitation is that most survey and administrative data sources as currently configured do not include sufficient information to enable tracking of long-term outcome data. Although such information is critical to service planning, there is a concerning lack of data sources that capture the clinical complexity of children with disabilities, span service sectors, track individual children over time, and include contextual information on families and communities.

While developing a more comprehensive reporting structure would be beneficial, a major challenge is that it is difficult to translate disability concepts, such as those in the International Classification of Functioning, Disability and Health (ICF) model, into a standard set of measures. In surveys, it is difficult for a concise set of questions to capture disability status. For example, Halfon and colleagues (2012) reviewed the prevalence of disability across 10 data sources for youth aged 18 and younger and found that specific childhood disability rates ranged from 1 to 13 percent depending on the source, the measure used, and the age range. Developing a more comprehensive reporting structure based on administrative datasets can also be challenging given that the ICF conceptual models of disability

differ from the many programmatic definitions of disability and eligibility criteria for services. As documented in Chapter 2 and noted above, the definitions of disability vary widely across programs, which, not surprisingly, results in substantially differing estimates of the eligible populations. In summary, in reviewing the potential to develop more global outcome measures, Livermore and Roche (2011) note that across both survey and administrative data, there are challenges in how disability is defined and measured, in the lack of large sample sizes, in data accessibility, in the quality of collected data, in poor coverage of certain disability-related topic areas, and in the frequency of data collection.

Finally, the committee often encountered a lack of rigorous program and service evaluations. Although extensive data are available on short-term, proximal impacts for selected interventions (e.g., positive behavior support for autism spectrum disorder), data are lacking on the effects of programs and services for children with disabilities on long-term health and functioning outcomes. Additionally, the large majority of studies present correlational or cross-sectional findings, thus limiting conclusions about causality. Most of the reviewed literature that attempts to examine links between programs and services and outcomes specifically demonstrates associational links at best. Hence, the generalizability of evidence-based research is hampered by the overall lack of longitudinal data. Increasing the amount and rigor of research examining the effects of programs and services on long-term outcomes will be important to improving programs and services for children with disabilities and their families.

Multiple factors may contribute to the lack of research-based evidence for the effectiveness of programs and services across domains examined in this report. One of the primary issues appears to be that children with disabilities and their families interact with a large number of intermittent programs and services throughout their lives, precluding isolating the cause and effect of any given outcome. Another reason may be that funding mechanisms for disability-related research often reflect many of the same disconnects seen in the programs themselves. For example, the National Institutes of Health (NIH) receives the most funding for health-related research, but focuses more on studies related to diagnosis and medical treatment than on evaluation of programs that are not strictly “medical.” This is a particular limitation with regard to developmental disabilities such as intellectual disability. The Institute for Education Sciences is concerned with broader interventions, but they need to be related specifically to education. The National Institute on Disability, Independent Living, and Rehabilitation Research focuses specifically on disability, but has much more limited funding and broadly focuses on all ages of individuals with disabilities. Based on the above gaps and limitations, the committee concludes:

OPPORTUNITIES FOR IMPROVING THE PROVISION OF SERVICES AND SUPPORTS

As highlighted above, the committee reached a number of conclusions resulting specifically from its review of optimal health and functioning outcomes, health care programs and services, and social and human capital development programs and services. In this chapter, the committee has thus far presented three overarching conclusions focused on characteristics of effective programs and services and gaps and limitations. The committee’s final task was to provide findings and conclusions that can inform decisions about SSA involvement and future research efforts. The committee recognizes and supports the important role played by SSA in providing economic supports to low-income families of children with severe disabilities. As outlined in Chapter 2, however, SSA does not serve a large population of children and youth who have less severe disabilities or do not meet SSA’s income requirements but are potentially served by other entities, such as schools, or are not supported at all. Additionally, although SSA plays an important income support role for a subset of children with disabilities and their families, it is not directly involved in many of the other services and supports that youth with disabilities may need. Hence for these roles, SSA would need to coordinate with other agencies to deliver many of the supports and services described throughout this report.

Based on its review of optimal child health and functioning outcomes (Chapter 3) and programs and services for children with disabilities and their families across a variety of domains (Chapters 4 through 6) and the conclusions drawn from this review, the committee provides below a set

of six conclusions that can help improve the provision of services and supports to children with disabilities and their families and enhance the ability of programs and services to improve health and functioning outcomes for children with disabilities. For each conclusion, the committee provides examples of potential opportunities for improving programs and services for children with disabilities and their families.

Engaging and Creating Partnerships with Children and Families

It is important that families of children with disabilities be engaged as partners and advocates for their children, and to this end, they need a supportive environment that recognizes and addresses the caregiver’s own needs and capacities and enables informed decisions regarding the child’s care. For example, health beliefs and cultural competence have been found to be important factors in ensuring access to services among children with autism spectrum disorder, as well as among immigrant children with other disabilities.

A recent policy statement on family engagement (HHS and ED, 2016) states that the first step in systemically embedding effective family engagement is to establish a culture in which families are seen as essential partners in the programs, services, and sectors that serve their children. Increasing engagement creates a two-way conversation that can provide invaluable feedback regarding what information is needed, wanted, and understood by families with regard to resources and decision making. Building family engagement in turn increases self-efficacy, self-confidence, and knowledge. When families feel empowered by such partnerships, family stress can be reduced and family functioning increased (Dunst et al., 1994).

A number of opportunities exist for increasing working alliances and child and family engagement in the child’s care. As discussed in Chapter 4, ensuring comprehensive and coordinated service delivery in a way that engages the child and family in the child’s care is important, with the patient-centered medical home (PCMH) model presenting a promising approach. Having a PCMH is associated with improved access to health

care and family support services, better developmental screening, improved chronic disease management, and a reduction in unmet needs. More rigorous research on the impact of access to a PCMH on children with disabilities, especially in relation to near- and long-term health and functioning outcomes, is needed. Increased use of modern telecommunications and technological advances also presents an opportunity for increasing child and family engagement in the child’s care. The various telehealth service delivery methods, discussed in Chapter 4, provide exciting opportunities for increasing access to care; improving health literacy; tracking and monitoring indicators of health; and ultimately, improving communications and collaboration among children, families, and providers. However, research on the impacts of telehealth is still in the early stages. New research focused on the impacts of telehealth on engagement, self-agency, and near- and long-term health and functioning outcomes among children with disabilities can lead to new opportunities for increasing access to quality programs and services.

Increasing Child and Family Health Literacy

To engage children and families actively in their own care, it is important for service providers to make a concerted effort to provide them with relevant information and increase their health literacy. Health literacy is “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (Nutbeam, 1998). It is important that written and verbal information be accessible, in plain language, and culturally appropriate. An expressed principle of effective family engagement is that “all family engagement opportunities respect, reflect, and embrace families’ cultures and are linguistically accessible to all” (HHS and ED, 2006, p. 6). Tailoring health information to the target population, including providing culturally appropriate materials in the family’s home language, is integral to helping children and families understand that which is most important—how the information applies to them and what actions to take. However, simply providing information to children and families is not enough. It is important that efforts to improve health literacy also focus on building the skills necessary to increase child and family self-agency (e.g., engaging in self-care and care-seeking behaviors), another area ripe for additional research.

The transition from child-serving to adult-serving sectors can be particularly difficult for children with disabilities, resulting in an increased likelihood of gaps in service access during this period. Encouraging efforts to increase the health literacy of children with disabilities and their families represents an opportunity to ensure access to needed services. Increasing health literacy can help children with disabilities and their families self-manage chronic conditions, motivate health-promoting behaviors, increase the child’s and her or his family’s role in decision making and goal setting, and ultimately increase the child’s chances for improved long-term outcomes related to self-determination and independent living.

Increasing Provider Knowledge of Childhood Disability

In addition to increasing health literacy among children and families, it is important to encourage increased knowledge of disability-related issues among providers who may have contact with children and youth with disabilities, but have little expertise related specifically to disability and/or little experience working with them. Doing so is especially important for service providers who typically serve adults and who may come into contact with youth with disabilities during their transition period. Additionally, it is important that service providers have access to and be able to provide information about other programs and services that may help children with disabilities and their families obtain necessary supports.

Potential opportunities to increase provider understanding of childhood disability include ensuring a focus on disability-related issues across a variety of postsecondary academic programs and increasing cross-disciplinary professional education, training, and work experiences. One potential approach is to expand funding for and the breadth of focus of interdisciplinary training programs, such as the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program and University Centers for Excellence in Developmental Disabilities Education, Research and Service (UCEDDs) discussed in Chapter 4. College and university undergraduate and graduate degree programs in relevant fields—such as general education and pediatric, adolescent, and adult health care—can include a greater focus on issues related to child and youth disability.

Improving the Dissemination of Information on Available Programs and Services

Health is a function of many personal characteristics and environmental factors that strongly influence outcomes for children with disabilities. Similarly, individual programs are linked to their environment. Not surprisingly, then, participation in those programs—particularly Medicaid, education programs, SSI, and other social needs programs (e.g., TANF)—varies substantially by state. There has as yet been no comprehensive effort to structure these programs as a “system,” and one result of this lack of cohesion is asymmetries in the information available about programs and services for children with disabilities that can influence outcomes. As a result, children with disabilities and their families often are unaware of programs and services for which they may be eligible and experience difficulties navigating the complex web of available programs and services effectively.

Children with disabilities and their families could benefit from increased and more easily accessible information about available programs and services, including information on eligibility and determination processes. One opportunity for achieving this is the creation of a single centralized source for information dissemination. For example, federal agencies that serve large numbers of children with disabilities, such as SSA, the U.S. Department of Education (ED) and the U.S. Department of Health and Human Services (HHS), could collaborate on an online resource center that would provide easily accessible and understandable information about all federal programs that serve children with disabilities and their families. Federal agencies also might consider increasing outreach to and coordination with other service sectors and state and local programs with which children and youth with disabilities have regular contact (e.g., schools, health care providers, community organizations), which serve as important sources for the dissemination of information on available programs and services.

Individually, federal programs that serve large numbers of children with disabilities could explore opportunities for disseminating information on other programs for which children might be eligible. For example, upon notifying an applicant of his or her eligibility determination, SSA and other federal programs could include information on other federal programs for which the child may be eligible. SSA field offices might also consider compiling and providing information about other federal, state, and local

programs and services that may be available to support children with disabilities who qualify for SSI.

It is important that federal programs that serve children with disabilities and their families also explore opportunities to increase identification of and outreach to potentially eligible children. Under IDEA, states are required to locate every child with a disability who is entitled to programs and services; other federal programs that provide much-needed support to children with disabilities do not have such a mandate. The result is that some children with disabilities do not receive needed supports for which they are eligible. Accordingly, federal agencies that administer disability-related programs might seek opportunities to actively identify potentially eligible children and increase direct outreach to them and their families. In addition, it is important that any information dissemination and outreach efforts (e.g., correspondence, informational products, forms) be written at a level that ensures they are easy to understand, regardless of education level (Fitzgerald and Watkins, 2006).

Creating a Streamlined Approach to Accessing Programs

The lack of a comprehensive, structured system of programs and services for children with disabilities and their families also makes it more difficult and time-consuming for children and families to access needed supports. During the committee’s second meeting, the desire to simplify and streamline was echoed by family advocates for children with disabilities, who outlined some of the complexities they faced in organizing services for their children. Some had followed very sophisticated pathways that are likely not available to all children and families, particularly those with limited incomes and other resources with which to pursue different options, especially those not immediately available in their geographic area. States and localities would benefit from learning from each other in this regard, especially given the variability that results in particular from wide variations in funding of health and educational services that directly affect both school programs and Medicaid.

The committee identified a number of potential opportunities for encouraging a more streamlined approach to accessing programs and services. States and localities could structure more streamlined service delivery in the context of the existing silos by enhancing program literacy or by creating a new pathway for service entry that would bundle services in a way that could be customized to meet each child’s needs. One option would be to

carefully document program services and attempt to assess the effects of increasing program literacy with respect to influencing program participation and short- and longer-term outcomes. At the federal level, a unified application process that would enable children with disabilities and their families to apply for all federal benefit programs for which they may be eligible would facilitate access to vital supports by children and families.

Ensuring Continuity of Access to Programs and Services During the Transition to Adulthood

As discussed throughout this report, the period of transition from childhood to adulthood presents a number of significant challenges for children and youth with disabilities. Effective planning for this transition is therefore vital for children with disabilities. In education, comprehensive transition planning for all children with disabilities has been found to be more effective if it begins before the federally recognized age of 16 in IDEA. Accordingly, almost half of U.S. states now begin mandated transition planning prior to age 16, with most beginning at age 14 (Henninger and Taylor, 2014). As discussed in Chapter 3, a life course perspective acknowledges that long-term outcomes related to transition are largely dependent on successful attainment of positive outcomes earlier in the child’s life, on which the child can continue to build. By the time a child with a disability reaches age 16, or even 14, it is often too difficult or too late to remediate for skills that IEP teams in elementary and middle school failed to address (TLS, 2016). Therefore, it is extremely important to focus on creating and pursuing near- and long-term goals throughout childhood that will contribute to attaining desired long-term outcomes.

Recent decades have seen increased focus on providing services and supports that encourage positive transitions from secondary education to postsecondary education or productive employment. Much less attention has been given to assisting children, especially those with disabilities, in transitioning from pediatric to adult health care services.

Many children with disabilities and their families receive support through one or more federal (or federally mandated) programs—including

special education (under IDEA requirements), SSI, and Medicaid—that provide or increase access to supports for children with disabilities and their families. However, eligibility for each of these programs differs according to a number of factors, including type and severity of disability, income, and age at which a child is no longer eligible for child benefits. As discussed above, continuity of access to health care services and supports can be threatened by “aging out” of particular programs or services. For example, children receiving SSI must be reevaluated according to adult criteria upon turning 18, while special education services may continue through the end of the school year when the student reaches age 21. In many states, SSI eligibility also automatically qualifies the recipient for Medicaid. Therefore, if a child is found to no longer be eligible for SSI at age 18, he or she also may no longer qualify for the needed health care services and supports that had been facilitated by Medicaid.

In addition to age-based barriers, some federal programs may create disincentives for youth with disabilities to pursue long-term goals. As discussed in Chapter 2, disability and poverty are intertwined—families living in poverty have higher rates of disability, and disability leads to lower household income. Economic stability for children with disabilities and their families can help improve near- and long-term health and functioning outcomes. The SSI program for children serves as an important lifeline for many families of children with disabilities, providing income support to families living in poverty in many states and, as noted above, enabling access to health care services by automatically qualifying the child for Medicaid. However, concern has been raised that the possibility of losing SSI benefits—both cash supports and access to Medicaid—may serve as a disincentive for youth with disabilities to seek paid employment and economic self-sufficiency as they transition to adulthood. Take, for example, an adolescent receiving SSI benefits and on Medicaid based on her SSI eligibility. As part of a transition program, she engages in part-time work, engendering the need for monthly salary reports to SSI and resulting in an increase in family income to the point that the family no longer meets SSI’s strict income requirements. As a result, she loses not only the monetary supports on which she and her family depend for meeting the increased support needs associated with her disability, but also the ability to access needed health care services that had been afforded by her Medicaid eligibility. Essentially, to retain access to these critical supports, people with disabilities must remain in poverty.

Focusing on opportunities that encourage children and youth with disabilities to seek job training, pursue paid employment, and create savings without fear of losing important safety nets on which they rely can positively impact long-term outcomes. One such opportunity is the creation, evaluation, and expansion of program waivers that can be used to extend

eligibility to additional children and provide access to additional services and supports not traditionally covered by the program. As part of the Youth Transition Demonstration, for example, SSA created for the SSI program a number of waivers “designed to allow participants to keep more of their earnings and encourage both savings and their continued education” (SSA, n.d.). Medicaid waivers have been used in many states to increase upper income limits for program eligibility, thus opening access to additional children, as well as to provide access to additional services not traditionally covered under Medicaid for children with disabilities, such as home- and community-based services. Broadening the reach and breadth of such programs and ensuring continuous accessibility of programs and services as youth transition to adulthood has the potential to help improve long-term health and functioning outcomes.

OPPORTUNITIES FOR IMPROVING DATA AND RESEARCH AND INFORMING DECISIONS ABOUT SSA INVOLVEMENT

In addition to the above conclusions regarding opportunities for improving the provision of services and supports for children with disabilities and their families, the committee developed three conclusions focused on opportunities for improving data collection and sharing, inspiring a culture of innovation, and informing decisions about future research efforts. It is in these areas that the committee identified the greatest potential opportunities for informing SSA involvement.

Improving Data Collection and Data Sharing Capacities

Although various programs that provide supports and services to children with disabilities and their families collect a large amount of data, the type and amount of data collected vary greatly. As highlighted above, few nationally representative data sources contain information on children with disabilities. Data from federal programs serving children with disabilities are often limited by authorizing legislation and program eligibility requirements, imposing limits on the populations on which the data are collected and generally focusing data collection on categorical definitions of disability. Most programs are neither comprehensive in the data they collect nor systematic in collecting information on comorbidities. No annual progress reports on the health and other outcomes of children and youth with disabilities exist.

Data sources that capture the clinical complexity of children with disabilities—tracking individual children over time, spanning service sectors, and including contextual information on families and communities—are critical to service planning and resource allocation. Data that track individual children over time can increase understanding of varying trajectories of disability, the types of services and approaches to service delivery that are most important to creating opportunities for improved health and functioning during different developmental periods, and the long-term impacts of programs and services.

It is important that data collection efforts not only focus on markers of health, impairment, and service use, but also include information related to social and environmental factors, which contribute significantly to the development of disability. Collecting information on social determinants of health that go beyond geographic location—for example, linking health data with geocoding opportunities to examine other contextual issues that may contribute to outcomes—can help deepen understanding of childhood disability and create opportunities to improve programs and services.

Opportunities exist for federal, state, and local agencies to collaborate to create better repositories of linked data and to make these data more readily accessible for research purposes. Creating linked data sources increases opportunities for agencies to collaborate for evaluation purposes, such as assessing factors that might influence program outcomes. Linked data sources could also facilitate research into the effects of programs on a larger array of child outcomes, which could substantially enhance the effectiveness of service delivery. The creation of better state and local information-sharing systems would allow policy makers to examine state variations in near- and long-term outcomes, which could highlight opportunities to intervene more effectively with youth. Increasing information sharing across programs and services can improve the quality of

data available on childhood disability and provide opportunities to track national progress over time.

The value of such a data system extends well beyond increased data on and a better understanding of childhood disability. Based on administrative data, there is evidence of variations at the state level in youth participation in a variety of programs, including SSI, Medicaid, and special education. However, the factors driving these differences are not well understood, in part because of differences in youth characteristics among states, differences in program rules and eligibility, and the economic environment. Linked data can be used for comparisons across states and communities to better understand variations in health and functioning outcomes and to inform policy. Translating these data for different stakeholders can help guide the creation of new programs and services for children with disabilities and inform research efforts, such as the testing of new interventions, shaping the next generation of programs and services for children with disabilities.

SSA has a history of developing data-sharing agreements to examine the long-term outcomes of various populations, including links to general population surveys such as the Current Population Survey and Survey of Income and Program Participation. Researchers have also collaborated with SSA to link school records (from the National Technical Institute for the Deaf) to administrative records in order to track long-term outcomes following school. SSA’s program and earnings data offer a rich source of lifetime program and earnings records. If other private (e.g., foundations), local, or state organizations have a promising approach, one option is to create a partnership with SSA to develop a data relationship whereby SSA can support the organization in tracking long-term program and earnings outcomes through its administrative systems. The relationship would require obtaining informed consent from participants and also developing data use agreements, but this approach has potential given that SSA has linked its data sources to other data in the past. Expanding SSA’s capabilities to link its administrative data systems to other data systems could foster a new understanding of the long-term outcomes of youth with disabilities into adulthood. Such information could be particularly valuable in evaluating new initiatives. However, SSA would need additional research capacity or more partnerships with research entities to conduct this sort of research involving a more proactive use of data. The main barrier to this extended research capacity is overcoming the significant legal hurdle of ensuring that any data match is secured and meets SSA’s stringent security requirements.

Inspiring a Culture of Innovation

Encouraging new and innovative approaches to providing services and supports to children with disabilities and their families can help improve programs and services and increase opportunities for achieving optimal health and functioning outcomes. It is important to create a positive culture in which data reporting is encouraged without the threat of punitive action, which will help paint a clearer picture of the state of disability programs and services.

More expansive and integrated data reporting on programs, services, social and environmental factors, and outcomes, as discussed above, could represent a major opportunity to identify gaps and, more importantly, expand innovation to better serve children with disabilities going forward. For example, federal agencies might use such information to explore opportunities for cross-agency collaboration on new or existing programs that cut across agency lines. State and local agencies, health care providers, schools, and other community organizations could do the same.

In reviewing available programs and services for children with disabilities and their families, the committee often faced a significant challenge: programs and services upon which many children with disabilities and their families rely frequently lack rigorous evaluation and information on long-term outcomes. There needs to be increased focus on applied research—evaluating existing models of care; developing, implementing, evaluating, and continuously improving new programs, services, and interventions; and providing technical assistance and support for the conduct of iterative quality improvement studies that can be documented and shared. Such an approach can increase opportunities for replication and diffusion of programs that have been shown to work in some sites or with specific populations to additional sites and populations.

Informing Future Research Efforts

As discussed in Chapter 6, SSA has the ability to create demonstration projects to test the efficacy of programs and services for children with disabilities. To date, SSA’s primary focus in developing rigorous evidence has been on promoting interventions to improve outcomes for transition-age youth into adulthood, particularly around employment. For example, lessons learned from the Youth Transition Demonstration interventions (discussed in Chapter 6) provide rigorous evidence of the potential for employment services to improve outcomes of youth on SSI who volunteer for these services. SSA currently collaborates with ED and the U.S. Department of Labor on the PROMISE program, which is also testing the efficacy of the delivery of employment supports.

To improve the evidence base for programs and services for children with disabilities, SSA might consider broadening the focus of future demonstration projects. Potential areas for consideration include examining opportunities for scaling up evidence-based programs and services to reach a greater number of children with disabilities, using what is known to work more consistently across additional sites, improving training and building capacity among service providers, and monitoring for fidelity to an effective practice. Information obtained from such projects could then be used to develop a more life course–focused set of interventions to serve people with disabilities.

SSA might also more actively serve youth at risk of becoming SSI recipients by working with other agencies to identify children with disabilities who are not currently receiving SSI, but who still have need for additional services and supports. For example, evidence from Hock and colleagues (2017) indicates the potential for Job Corps services to influence outcomes and reduce dependency on SSI (although it should be noted that these findings reflect results from a cohort in the 1990s).

Finally, findings from health care and education interventions also suggest options for intervening with younger populations to track new outcomes that might lead to reduced reliance on SSI. SSA might consider broadening the focus of its demonstration projects to include programs and services aimed at improving nonemployment outcomes, such as self-determination, school achievement, and health. To do so, it is likely that

SSA will need to develop partnerships with other federal, state, and local agencies or private entities. For example, through a more active collaboration with the Centers for Medicare & Medicaid Services and the Substance Abuse and Mental Health Services Administration, SSA might be able to work with these agencies to test many of the health interventions described in Chapter 4. These partners also are likely to be strongly interested in collaborating with SSA given that many SSI recipients have high medical expenditures and hence are a potential rich target population for identifying more efficient means of delivering health and medical interventions, services, and supports.

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