Services for children with disabilities and their families should be far more coordinated and easier to access, according to a new report produced for the federal government evaluating everything from health care and special education to employment.
The 285-page analysis from the nonprofit National Academies of Sciences, Engineering and Medicine found that even the most capable families struggle to navigate the complex web of programs available to assist those with disabilities. For those with less means or families who live in rural areas, the report found those challenges are further exaggerated.
“Service fragmentation places a heavy burden on families of children with disabilities who need access to and coordination of high-quality services,” said Amy Houtrow, associate professor of physical medicine and rehabilitation and pediatrics at the University of Pittsburgh, who chaired the committee tasked with producing the report. “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.”
The National Academies of Sciences, Engineering and Medicine convened a group of 16 academics who focus on various aspects of the disability experience to produce the report through a contract with the Social Security Administration. Members of the panel evaluated federal, state and local programs providing all types of services to school-aged children with disabilities.
Overall, the report paints a picture of a services system that’s riddled with barriers stemming from variation in the availability of services from one state to the next, fragmented services, an inadequate workforce of professionals to provide care and insufficient plans to transition people to adulthood, among other issues.
Meanwhile, the panel found that while many programs exist to support those with disabilities, families often have trouble understanding what is available to them.
Enhanced coordination of care and a greater focus on specific goals designed to help kids with disabilities prepare for adulthood would help promote optimal outcomes in terms of health and functioning, the report concludes.
“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,” Houtrow said. “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.”