Opportunities for Improving Programs and Services for Children with Disabilities (2018) / Chapter Skim
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Pages 1-14
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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.
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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
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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. Outcomes The committee focused on outcomes across two broad areas: health and social and human capital development.
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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 servicedelivery models for health care programs often differ from those for social and human capital development programs.
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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.
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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.
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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.
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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.
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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.
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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.
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Conclusion 2: Although a wide variety of services and programs ex ist 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;
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, 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 environ ment 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 provid ers, schools, and other support sectors encountered by children with disabilities work together in improving the health and functioning of children with disabilities.
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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.
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Achieving this will require • rigorous evaluation of programs and services; • testing, monitoring, and reporting of health and functioning out comes; 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.
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