Increasingly, childhood disability is not solely considered as reflecting an impairment of the child but as resulting from a complex interaction among the child, the impairment, and the environment. Accordingly, attention must focus not only on children’s health impairments, but also on their ability to perform age-appropriate daily activities and participate in social and community activities in the context of their environment. Many persistent or long-lasting conditions are mild and do not significantly affect the child’s ability to develop age-appropriate skills or engage in expected and preferred activities of daily life. However, some health conditions interfere with developmental processes and may result in lifelong disability. In their most severe forms, such disorders are serious lifelong threats to children’s social and emotional well-being, quality of life, and anticipated adult outcomes, such as employment or independent living. The severity of disability in many children means that even with access to quality services, disability is likely to persist, and many children will continue to need services throughout their adult lives. Positive health and functioning outcomes for children with severe disabilities occur along a continuum, and successful outcomes often do not negate the need for continued services and supports throughout their adult lives. Even when the need for services and supports persists into adulthood, successful outcomes result when the individual’s quality of life and ability to participate meaningfully in society are enhanced. This is especially important when considering children who
1 This summary does not include references. Citations to support the text and conclusions herein are provided in the body of the report.
receive or may qualify for Supplemental Security Income (SSI), who are substantially more likely to have severe disabilities.
All children are guaranteed the right to participate in school, society, and as they become adults, the workforce, without discrimination based on disability. To support these rights, many programs and services have been developed across a variety of domains—including health care, education, and employment—that are all designed to enhance the health and functioning of school-aged children with disabilities. This study was undertaken at the request of the Social Security Administration (SSA) to examine these programs and services and (1) describe the characteristics that contribute to their effectiveness, (2) identify their gaps and limitations, and (3) provide findings and conclusions that can inform decisions about SSA involvement and future research to improve the health and functioning outcomes for children who receive SSI benefits.
The committee convened to conduct this study began by establishing the study’s parameters, as detailed below.
Pinpointing the prevalence of disability among children in the United States is difficult, as conceptual frameworks and definitions of disability vary. Definitions used by different federal programs for children with disabilities have been encoded within the authorizing legislation. Given these differing legislative purposes, it is not surprising that estimates of the prevalence of childhood disability vary substantially. For example, approximately 1.3 million children (1.6 percent of the total U.S. population of children) receive SSI benefits, based on a strict definition requiring that the child’s condition(s) results in marked and severe functional limitations and that the child’s family meet stringent low-income requirements, while approximately 6.0 million children (8.7 percent) receive special education services under the Individuals with Disabilities Education Act (IDEA). Even within the limits of inconsistent definitions, these sources confirm that childhood disabilities are prevalent and increasing.
The SSI program, administered by SSA, has a legislative mandate to focus on low-income individuals with very severe disabilities that are “expected to persist over an extensive period of time or result in death.” Because SSI eligibility requires meeting a high bar of clinical impairment and low income, children with disabilities who receive SSI benefits are a small percentage of the overall population of children with disabilities.
Three-quarters of children receiving SSI benefits live in households with
income below 200 percent of the federal poverty level, and approximately half of recipients are characterized as having mental health disorders. Since children on SSI, while having a diverse range of disabilities, share many of the same needs, the committee used a noncategorical, or non-disease-specific, approach to disability in assessing programs and services designed to improve their health outcomes. The committee also focused particular attention on the interactions between poverty and childhood disability.
Finally, the committee was tasked with focusing specifically on “school-aged children.” Traditionally, either 18 or 21 years is considered the age of transition to independence. However, the current understanding of child development recognizes that youth continue to develop into young adulthood, and the effects of earlier programs and services are often measured by outcomes that occur as the child enters this stage. Furthermore, many school-related activities for children with disabilities are available into the third decade of life. Accordingly, “school-aged” is defined as ages 5–25 for the purposes of this study.
Programs and Services
SSA also asked that the committee focus on service delivery and those programs and policies that support the delivery of effective treatments and social and educational interventions. Where evidence of effectiveness was available, this report notes that evidence, generally in conjunction with describing the salient programs and services. Of note, this report does not provide an in-depth examination of individual treatments for disabling medical conditions, including specific pharmaceutical interventions and educational and behavioral interventions.
Additionally, the scope of this study did not encompass providing a comprehensive summary of every program and service available to children with disabilities. Rather, the committee focused on how services are delivered and a number of service domains that are particularly relevant to children with disabilities and on large-scale programs, while recognizing that even national programs may vary 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.
The committee focused on outcomes across two broad areas: health and social and human capital development. Although physical and mental health are too often separated in terms of programs and services, it is important to stress that the concept of health encompasses both physical and
mental aspects, and the two are highly interrelated. Accordingly, the terms health and health outcomes, as used throughout this report, encompass both physical and mental aspects of health unless otherwise stated, and represent outcomes directly related to children’s health conditions (disorders or illnesses of body systems that are conventionally targeted and tracked in health care settings). Social and human capital development outcomes encompass seven outcome domains spanning a 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 independence. The first three of these domains focus primarily on the child’s attainment of the building blocks necessary for longer-term outcomes in the latter four domains.
Disability, especially among child SSI recipients, often is persistent and requires lifelong services and supports. While goal-oriented, evidence-based programs and services can greatly improve outcomes, it is important to acknowledge that children and youth with disabilities frequently face one or more risk factors that contribute to negative outcomes. Disability and poverty are intertwined—families living in poverty have higher rates of disability, and disability leads to lower household income. For example, a strong association exists between poverty and developmental delays, such as language delays. Furthermore, higher rates of asthma, obesity, learning disability, and behavioral disorders are seen in children living in poverty. Inadequate or delayed access to services, noncompliance with existing disability legislation, unmet health care needs, exposure to child abuse and neglect, bullying by peers, stigma, substance use and abuse, and incarceration are just some of the commonly cited influences faced by children with disabilities.
PROGRAMS AND SERVICES EXAMINED
Large federal programs aimed at improving outcomes for children with disabilities include SSI, Medicaid, the Children’s Health Insurance Program (CHIP), special education, and other school-based services. It is important to note that children with disabilities will require the assistance of a range of programs and services to meet their unique needs, and that some types of health services are offered through schools, job centers, or other community organizations outside of the traditional health care sector. Conversely, positive social and human capital outcomes over the life span, such as having a satisfactory working life, are inextricably linked to such factors as access to mental health treatment and prompt treatment of illness or chronic pain. However, regulations, funding sources, public oversight, and service-delivery models for health care programs often differ from those for social and human capital development programs. As the levers of programs and
policy change are often separated, the committee ultimately decided to address health care and social and human capital development programs and services in separate sections of the report.
Children with disabilities must often rely on multiple service providers across varying settings who provide an array of needed health care services. In addition to primary care services needed by all children, children with disabilities often require specialized health services. Where available, home- and community-based services, hospital-based care and clinical programs, and subspecialty outpatient care programs all help children access a variety of services and treatments that are coordinated and tailored to their specific needs. In recent decades, health care for children, especially those with disabilities, has increasingly moved toward a more coordinated and integrated approach to service delivery, such as the patient-centered medical home (PCMH). Emerging telehealth service-delivery models may also play an increasing role in the delivery of specialized services as these models are further developed and defined.
The committee viewed the PCMH as having attributes that support positive child outcomes. While a variety of approaches can be used to implement the PCMH, positive outcomes are supported by services with five core attributes: (1) patient-centered, (2) comprehensive, (3) coordinated, (4) accessible, and (5) committed to quality and safety. The natural outgrowth of a well-designed PCMH is a patient-centered medical neighborhood, which consists of the PCMH and other health care providers, public health agencies, and social service providers all working to help the child achieve positive near- and long-term health and functioning outcomes in a coordinated fashion.
The committee identified five primary types of services within the health care sphere that are of particular importance for children with disabilities: (1) habilitative and rehabilitative services, (2) mental and behavioral health services, (3) health promotion and wellness services, (4) assistive technology services, and (5) services that help children transition from pediatric to adult health care. Examples of evidence-based, promising, and innovative smaller-scale programs are presented throughout this report. Many programs and services exist in the United States to aid children with disabilities. Examples of quality characteristics these programs and services have in common are provided, as well as some detail on interventions designed to improve outcomes for the children served.
Children with disabilities, including those who have developmental disorders or have experienced temporary or permanent loss or reduction of functioning secondary to an injury or illness, often also require habilitative
services to learn new skills and improve existing skills and functioning and/or rehabilitative services to help regain skills that have been lost or impaired. These services include physical therapy services—which generally focus on impairments and disabilities related to musculoskeletal, neuromuscular, cardiovascular, pulmonary, and/or integumentary systems and on unique personal and environmental factors that negatively impact human performance—and occupational therapy services—which help children participate in daily activities they want and need to do and improve function in all of their environments. Habilitative and rehabilitative services also include speech-language pathology and audiology therapy services, which are discussed in the context of school-based services, where they are most often delivered.
Mental and behavioral health services are an important source of support for many children with or at risk for disability as the result of a mental health condition. Such services are also important to children with physical disabilities, who are often at increased risk for comorbid or co-occurring mental health impairments. Although these services are too often separated from other domains of health care, it is important to note that the committee strongly believes that they target important subpopulations of children with disabilities: those at risk of developing disruptive behavior disorders, including attention-deficit hyperactivity disorder (ADHD), and those at risk of developing substance use disorders. They include a variety of prevention and early intervention services that focus on promoting positive emotional, behavioral, and social outcomes. Mental and behavioral health treatment services, including psychotherapeutic interventions and psychopharmacological interventions, provide effective means of addressing mental health disabilities and co-occurring mental health impairments.
For children with disabilities, it is especially important to promote healthy behaviors in order to prevent or reduce comorbid conditions. Accordingly, the committee reviewed a variety of health promotion and wellness services, particularly in the domains of physical activity, reproductive health and sexuality, and improving child and family health literacy.
During adolescence, children with disabilities reach a particularly salient period in which they prepare to transition to adulthood. This transition presents a number of challenges, especially with regard to transitioning from pediatric to adult health care. The committee reviews services that help children prepare for this transition, aiming to limit interruptions in their ability to access necessary health care services during this period.
The committee also highlights the importance of public health insurance programs—Medicaid and CHIP—which are crucial to ensuring access to needed health care services for many children with disabilities from low-income families. Other federal programs, including those administered by the Maternal and Child Health Bureau (MCHB), the Centers for Disease
Control and Prevention (CDC), and the Substance Abuse and Mental Health Services Administration (SAMHSA), are also discussed.
Social and Human Capital Development
In addition to health care programs and services, children with disabilities need a wide array of programs and services designed to encourage healthy growth and development and support long-term outcomes necessary for a successful transition to adulthood. These include school-based special educational services (specially designed instruction, supplementary aids and services, and related services) and transition services. They also include programs and services outside of schools, including vocational rehabilitation and pre-employment services, and independent and integrated community living programs. Advocacy programs and economic support programs provide additional supports to help children with disabilities and their families access needed programs and services and provide for additional needs.
Unlike health care programs and services, educational programs and services are guided by overarching legislation—IDEA, Section 504 of the Rehabilitation Act of 1973, and Title II of the Americans with Disabilities Act—with schools providing a centralized support system. IDEA mandates that states locate every child with a disability who is entitled to programs and services, including home-schooled children and those enrolled in private schools, and guarantees them access to education-related disability services.
Since the 1990s, a convincing body of evidence has emerged with regard to the impact of promoting access to the general education curriculum on educational outcomes for students with disabilities. Research suggests that inclusive education has positive impacts on the development of academic skills and academic achievement and improved outcomes related to communication, social skills, self-determination, and employment. Students receiving specially designed instruction can achieve successful education outcomes in inclusive environments with proper support from teachers and support personnel.
Specially designed instruction adapts learning content, methodology, or delivery of instruction to meet each child’s unique needs and ensure access to the general curriculum, providing students with different avenues to acquire content knowledge, process information, construct meaning, and make sense of concepts. Although educational instruction is typically provided by teachers, specially designed instruction can also engage others, such as the child’s peers, in supporting her or his educational needs. Peer support is a strategy that involves placing students in pairs or in small groups to participate in learning activities that support academic instruction
and social skills. The provision of peer support, both within and outside the classroom, has been shown to help foster inclusion across the life span.
IDEA (2004) also guarantees children the right to education in the least restrictive environment through supplementary aids and services, which encompass anything a child needs to be educated alongside peers without disabilities to the maximum extent appropriate. Examples include adapted equipment, assistive technology, training for staff or parents, a one-on-one aide, accommodations (e.g., more frequent breaks or preferred classroom seating), and adapted materials. IDEA also guarantees access to an array of related services, including transportation, speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation (including therapeutic recreation), social work services, school nurse services, counseling services, orientation and mobility services, and medical services (for diagnostic and evaluation purposes only). School nurses have been found to serve a particularly important role in providing screening, assessment, diagnosis, counseling, and medical services, often assuming many roles to meet students’ needs, including clinician, care coordinator, liaison/collaborator, counselor, health educator, and advocate. Schools often also play a role in a child’s entry into receiving mental health services. Tiered support models are frequently employed to provide increasing levels of such services, from universal and targeted prevention efforts to classroom-based interventions to the provision of psychotherapeutic treatment. School social workers play an important role in these efforts.
As children with disabilities reach adolescence, the focus of programs and services begins to shift to preparation for adult life. School-based transition services are a coordinated set of activities focused on facilitating the child’s movement to postschool activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, and community participation.2 IDEA mandates that educators provide transition services to youth with disabilities who are at least 16 years old; however, almost half the states begin required transition education services earlier—from 13 to 15 years of age. IDEA also mandates student involvement in transition planning, which has been found to be predictive of postsecondary education and employment for students with disabilities. Student involvement helps promote self-determination, broadly defined as acting as the causal agent in one’s life. The National Technical Assistance Center on Transition (NTACT) serves an important role in identifying, reviewing, and distributing information on evidence-based practices related to transition and predictors of postsecondary outcomes for children with disabilities.
2 Individuals with Disabilities Education Act, 20 U.S.C. § 1400 (2004).
Beyond the classroom, many services and programs have sought to improve transition-related outcomes for children with disabilities. The Workforce Innovation and Opportunity Act outlines a critical need for youth and young adults to have more opportunities to gain necessary skills for securing competitive employment. The intent is to improve the quality of the workforce and the earnings of workers, with special emphasis on pre-employment training services for out-of-school youth and youth with disabilities. Pre-employment transition services include job exploration counseling, work-based learning experiences (including in-school and after-school opportunities, or internships), counseling on postsecondary education programs, workplace-readiness training, and instruction on self-advocacy.
Based on an extensive review of research, demonstration projects, and acknowledged effective practices, Guideposts for Success was developed as a practical tool to help practitioners and policy makers conceptualize optimum service delivery for youth with disabilities. The tool outlines five primary developmental activity domains on which to focus in order to help youth transition successfully to adulthood: school-based preparatory experiences, career preparation and work-based experiences, youth development and leadership, connecting activities, and family involvement and supports. Within the transition and employment domain, research has focused predominantly on bringing together various services across these components, making it difficult to assess the impact of individual services. However, several public and private entities have developed intervention approaches that include one or more components from the Guideposts model, including large-scale demonstration projects.
Sponsored by SSA, the Youth Transition Demonstration (YTD) provides the most comprehensive information about the potential for interventions to influence outcomes of transition-age youth with disabilities, based on key components of the Guideposts model. Six YTD sites participated in random assignment following service strategies combined with SSA waivers of certain program rules to enhance work incentives, intended to help youth with disabilities maximize their economic self-sufficiency as they transition to adulthood. A second major federal demonstration focusing specifically on children receiving SSI, Promoting Readiness of Minors in Supplemental Security Income (PROMISE), is currently under way and will eventually provide new evidence on the effects of comprehensive transition services. Similar to YTD, PROMISE includes a focus on providing youth with paid work experience and a rigorous random assignment evaluation design, but it also has a stronger focus on coordination with state social service agencies and targets both youth and families. Private initiatives, such as the Marriott Foundation’s Bridges from School to Work, Project SEARCH, and CareerACCESS, also play an important role during transition.
Increased independence and participation in the community are important goals for many youth with disabilities as they transition into adulthood. The Department of Health and Human Services’ Administration for Community Living (ACL) administers a number of direct service programs and grants to states to help provide, expand, and improve the provision of independent living services. Centers for Independent Living, funded by ACL grants, help youth with disabilities develop skills for independent living and self-advocacy; provide information and referral services; and often provide direct services, such as health care, transportation, and housing and employment assistance. Programs administered by the Department of Housing and Urban Development (HUD), such as the Section 811 Supportive Housing for Persons with Disabilities program, the Section 811 Project Rental Assistance program, the McKinney Homeless Assistance Act, and the Housing Trust Fund, increase opportunities for low-income individuals with disabilities to live independently in the community.
Children and youth with disabilities often may encounter difficulties accessing needed programs and services. A number of federal, state, and nonprofit groups have created programs to advocate for the rights of individuals with disabilities, provide legal supports to help children and families access services, and advocate for legislative initiatives focused on improving opportunities for individuals with disabilities. Economic support programs, including SSI and Temporary Assistance for Needy Families, provide cash supports to help children with disabilities and their families address additional needs not covered by other disability-related programs and services.
Based on its review of programs and services for improving health and functioning outcomes for children with disabilities, the committee carried out the three primary tasks cited earlier: (1) describing the characteristics that contribute to the effectiveness of these programs and services, (2) identifying their gaps and limitations, and (3) providing findings and conclusions that can inform decisions about SSA involvement and future research efforts. Resulting from this work were the 12 overarching conclusions presented below.
Characteristics That Contribute to Effectiveness
The committee’s first task was to identify characteristics that contribute to the effectiveness of programs and services. Based on its review, the committee reached the following conclusion:
Conclusion 1: Children with disabilities need access to a wide range of quality programs and services that meet their individual needs and support smooth transitions to new and different programs and services across childhood and into adulthood. Eight specific characteristics commonly contribute to the effectiveness of programs and services for children with disabilities and their families:
- engaging children and families in the child’s care and building solid support networks for the child and her or his caregivers;
- providing individualized services and supports based on an assessment of the child’s and family’s specific needs, strengths and weaknesses, and interests;
- offering or connecting children and families to interventions that have strong evidence of efficacy or effectiveness, increase the likelihood of desired health and functioning outcomes, and are consistent with current professional knowledge;
- having effective outreach strategies and helping connect families to needed supports;
- helping children and families navigate the array of available programs and services and ensuring coordination of care within and across service sectors;
- focusing on achieving specific near- and long-term goals that help children prepare for transitioning to adulthood;
- increasing the child’s ability to negotiate new regulations, new expectations, new providers, new ambiguities, and greater responsibilities for accessing available programs and services as the child transitions to adult programs and services; and
- engaging in rigorous quality control, including regular, systematic evaluation and continuous improvement activities.
Gaps and Limitations
The committee’s second task was to identify gaps and limitations of programs and services for children with disabilities. Based on its review, the committee reached two conclusions related to (1) access to and quality of services and (2) data and research.
Conclusion 2: Although a wide variety of services and programs exist to support the needs of children with disabilities and their families and encourage healthy growth and development, a variety of gaps and limitations create barriers to services and substantial variation in access to and quality of services. These include
- sociodemographic and socioeconomic disparities;
- geographic disparities;
- state variation in the implementation of federal programs;
- insufficient workforce capacity and development;
- fragmentation of services;
- limited, fragmented, and difficult-to-access information on programs and services;
- lack of preparedness for transitioning to adult services and programs; and
- gaps in continuity of care during the transition to adult programs and services.
Conclusion 3: The evidence base for programs and services aimed at improving health and functioning outcomes for children with disabilities, although extensive in some respects (e.g., short-term impacts for selected interventions), is limited overall because of a number of factors, including
- wide variation in how disability and related outcomes are defined and measured;
- limited longitudinal data on health and functional outcomes;
- a lack of rigorous evaluation of programs and services, limited reporting of data, and variability and inconsistencies in the focus and level of detail of reported data;
- persistent challenges in information sharing across government agencies and a lack of integration across data systems; and
- inability to isolate effects of programs and services in an environment in which children may use different programs and services over time as their needs evolve.
Opportunities for Improving the Provision of Services and Supports
Building on the findings presented throughout this report, the committee formulated the following six conclusions that can inform opportunities to 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:
Conclusion 4: It is important that children, parents, health care providers, schools, and other support sectors encountered by children with disabilities work together in improving the health and functioning of children with disabilities. When all parties involved strive to create working alliances—where children believe that providers have their best interests at heart, value their contributions, and share in developing and helping them achieve their goals—the result is increased
opportunities for ensuring children’s health and encouraging their positive growth and development.
Conclusion 5: Children with disabilities and their families need the information and tools necessary to understand treatment options, voice informed opinions and preferences regarding decisions about the child’s care, and engage in self-care.
Conclusion 6: Increased focus on issues related specifically to childhood disability during postsecondary and graduate education and in-service training programs across service sectors will facilitate greater understanding and more effective use of information related to children’s health and disability and lead to improved quality of services.
Conclusion 7: Children with disabilities and their families need better information about available programs and services for which they may be eligible.
Conclusion 8: Children with disabilities and their families will benefit from a more streamlined approach to accessing programs for which they may be eligible.
Conclusion 9: Identifying and remedying policies that produce age-based barriers to continuity of access or create disincentives for youth with disabilities to pursue long-term goals related to paid employment and economic self-sufficiency is important. Programs and services that encourage children with disabilities to pursue goals related to transitioning successfully to adulthood and attaining long-term self-sufficiency, without fear of losing critical supports, can positively impact long-term 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, as discussed in greater detail in Chapter 7.
Conclusion 10: Improving programs and services for children with disabilities will require strategies to improve data and information on trajectories, outcomes, and interventions.
- Fully understanding chronic health conditions, their consequences, and their response to treatments requires data that follow the individual and the condition over time.
- Encouraging governmental (federal, state, and local) and nongovernmental programs to collect, synthesize, and publish data on their programs will support the dissemination of innovative programs for children with disabilities.
- Developing a more comprehensive reporting structure linking federal, state, and local administrative data systems could help foster a new understanding of the long-term outcomes of youth with disabilities into adulthood and help shape the next generation of programs and services for children with disabilities.
Conclusion 11: Inspiring a culture of innovation is critical to improving health and functioning outcomes for children with disabilities. Achieving this will require
- rigorous evaluation of programs and services;
- testing, monitoring, and reporting of health and functioning outcomes; and
- the development of new and innovative approaches for supporting children with disabilities and their families.
Conclusion 12: SSA has an opportunity to improve the evidence base for programs and services for children with disabilities through an expansion of its demonstration projects beyond their previous and current focus on employment, independent living, and self-sufficiency and through partnerships with other federal agencies that serve children with disabilities.