Opportunities for Improving Programs and Services for Children with Disabilities (2018) / Chapter Skim
Currently Skimming:
7 Conclusions
7 Conclusions
Pages 237-276
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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.
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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.
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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.
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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)
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• 4.5. iven that access to care is a problem across the country, service G delivery models that capitalize on modern advances in technology and telecommunications, such as telehealth, present exciting opportuni ties for increasing the accessibility of specialized health care services, sharing health information, monitoring medical and health data, and increasing the role of children and their families in self-care.
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in the least restrictive environment; health care services) that help improve the health and functioning of children with disabilities.
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test interventions that target youth prior to Supplemental Security Income (SSI) (or non-SSI program populations)
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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.
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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 transitionage youth with disabilities, such as the Promoting Readiness of Minors in Supplementary Security Income (PROMISE)
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Based on its review of programs and services and drawing on the evidence presented throughout this report, the committee concludes: 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 ser vices across childhood and into adulthood. Eight specific characteristics commonly contribute to the effectiveness of programs and services for children with disabilities and their families: • ngaging children and families in the child's care and building e solid support networks for the child and her or his caregivers; • roviding individualized services and supports based on an as p sessment of the child's and family's specific needs, strengths and weaknesses, and interests; • ffering or connecting children and families to interventions o that have strong evidence of efficacy or effectiveness, increase the likelihood of desired health and functioning outcomes, and are consistent with current professional knowledge; • aving effective outreach strategies and helping connect families h to needed supports; • elping children and families navigate the array of available h programs and services and ensuring coordination of care within and across service sectors; • ocusing on achieving specific near- and long-term goals that f help children prepare for transitioning to adulthood; • ncreasing the child's ability to negotiate new regulations, new i expectations, new providers, new ambiguities, and greater re sponsibilities for accessing available programs and services as the child transitions to adult programs and services; and • ngaging in rigorous quality control, including regular, system e atic evaluation and continuous improvement activities.
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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.
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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.
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. Service providers' sensitivity to family culture and health beliefs is an important factor in ensuring access to services for children with disabilities.
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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.
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Similar shortages exist in the number of general and special education teachers (Boe, 2014; Cross, 2017)
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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.
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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.
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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)
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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.
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These include • ociodemographic and socioeconomic disparities; s • eographic disparities; g • tate variation in the implementation of federal programs; s • nsufficient workforce capacity and development; i • ragmentation of services; f • imited and difficult-to-access information on programs and services; l • ack of preparedness for transitioning to adult services and pro l grams; and • aps in continuity of care during the transition to adult pro g grams and services. 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.
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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.
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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.
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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.
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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.
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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.
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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.
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Increasing health literacy can help children with disabilities and their families selfmanage 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 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 under standing and more effective use of information related to children's health and disability and lead to improved quality of services.
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, 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)
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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In Handbook of research on special education teacher preparation, edited by P
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2006. Parents' rights in special education: The readability of procedural safeguards.
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2017. Preparing for life after high school: The characteristics and experiences of youth in special education, Vol.
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2011. Testimony for hearing on Supplemental Security Income benefits for chil dren.
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