Uncertainty and complexity are major themes of The Politics of Autism.
While a variety of services and programs exist to support the needs of children with disabilities and their families, a focus on achieving specific near- and long-term goals that help prepare for adulthood and coordination of care within and across service sectors are integral to encouraging healthy growth and development, says a new report from the National Academies of Sciences, Engineering, and Medicine. The committee that conducted the study and wrote the report examined federal, state, and local programs and services in a range of areas, such as health care, special education, transition to adulthood, vocational rehabilitation, and social needs care.
Although children with disabilities have a diverse range of health conditions, they share many of the same needs; therefore, the committee used a non-disease-specific approach to assessing programs and services designed to improve children’s outcomes. The life-course perspective acknowledges that early experiences impact later experiences and long-term outcomes, so it is important that near- and long-term goals are linked to the attainment of desired long-term outcomes and that services are individualized based on an assessment of the child’s and family’s specific needs, the report says. Several other characteristics contribute to the effectiveness of these programs and services, such as engaging children and families in their care, helping them navigate and connect with the array of available supports, and conducting rigorous, systematic evaluation and continuous improvement of services.
A variety of gaps and limitations create barriers to access and variable quality of services, the report says, such as socio-demographic and socio-economic disparities, state variation in the implementation of federal programs, fragmentation of services, insufficient workforce capacity and development, lack of preparedness for transitioning to adult services and programs, and gaps in continuity of care. The committee identified a number of ways to enhance the provision and quality of programs and services to improve health and functioning outcomes for children with disabilities.
“Service fragmentation places a heavy burden on families of children with disabilities who need access to and coordination of high-quality services,” said committee chair Amy Houtrow, associate professor of physical medicine and rehabilitation and pediatrics at University of Pittsburgh, and vice chair of physical medicine and rehabilitation and chief of the Division of Pediatric Rehabilitation Medicine at Children's Hospital of Pittsburgh. “Even the most well-resourced and organized families indicate how daunting it is to navigate the various service sectors to ensure that their children get the care they need to thrive. As a society, we invest a lot in children and youth, and we should make sure those investments also enable children with disabilities to reach their full potential. We hope that the committee’s efforts to highlight the ample opportunities to improve programs and services will help inform future policy to advance service delivery for all with disabilities and their families.”
Pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary, the report says. In addition, the evidence base for programs and services aimed at improving outcomes for children with disabilities is limited because of a number of factors, such as limited longitudinal data on health and functioning outcomes, a lack of rigorous evaluation of existing programs and services, and the inability to isolate impacts when children use different programs and services over time as their needs evolve. The committee outlined opportunities to improve the collection and sharing of data and to inform future research efforts on trajectories, outcomes, and interventions, in order to develop innovative and collaborative approaches for promoting healthy growth and development for children with disabilities and supporting their families.
The study was sponsored by the U.S. Social Security Administration. The National Academies of Sciences, Engineering, and Medicine are private, nonprofit institutions that provide independent, objective analysis and advice to the nation to solve complex problems and inform public policy decisions related to science, technology, and medicine. They operate under an 1863 congressional charter to the National Academy of Sciences, signed by President Lincoln. For more information, visit nationalacademies.org.