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Services for children with disabilities and their families should be better coordinated and easier to access, according to a new report from the National Academies of Sciences, Engineering, and Medicine.
Commissioned by the Social Services Administration (SSA), Opportunities for Improving Programs and Services for Children with Disabilities was prepared by a national team of experts led by Amy Houtrow, MD, MPH, PhD, associate professor of Physical Medicine and Rehabilitation and Pediatrics at the University of Pittsburgh School of Medicine.
The 285-page report, which examined federal, state, and local services and supports in areas ranging from health care and special education to employment, found that even the most capable families struggle to navigate the complex web of programs available 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 Dr. Houtrow, who chaired the committee that produced 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,” added Dr. Houtrow, who is also vice chair of Physical Medicine and Rehabilitation and chief of the Division of Pediatric Rehabilitation Medicine at Children’s Hospital of Pittsburgh of UPMC.
The report cites numerous gaps and limitations that create barriers, including variations in quality and availability of services from one state to another, fragmented services, insufficient workforce of qualified professionals to provide care, and lack of transition planning. While a variety of services and programs exist to support the needs of children with disabilities and their families, care needs to be better coordinated across service sectors and focused on preparation for adulthood.
“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,” said Dr. Houtrow.
“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.”