A recent Child Trends Research Brief, “Children with Disabilities: State-Level Data from the American Community Survey,” uses data to look at the diverse needs of children with disabilities. Several critical findings and topics were also noted in the Future of Children’s recent issue on Children with Disabilities.

Both the Child Trends research brief and the Future of Children note that there is little consensus in defining children with disabilities. “Researchers tend to focus on the individual causes of disability such as autism, asthma, cystic fibrosis, or attention-deficit/hyperactivity disorder” (Future of Children). Regardless of the definition, children with disabilities need more specialized care medically, environmentally, and educationally. Parents of these children “often need to advocate for their child across multiple domains, from managing the child’s medical care, to ensuring an appropriate and individualized educational plan is in place, to meeting significant expenses that may arise due to the disability” (Child Trends).

“During 2008-2010, there were 2.9 million U.S. children with one or more disabilities. These comprised four percent (one in every 25) of all non-institutionalized children, ages birth to 17. Nearly one in three disabled children (31 percent) were living in poverty (compared with 20 percent of all children). Most children with disabilities (94 percent) were covered by health insurance; more than half (58 percent) were covered by public insurance programs.” (Child Trends)

As Child Trends notes, health insurance is vital for children with disabilities. The Child Trends brief cites Peter Szilagyi’s Future of Children chapter, “Health Insurance and Children with Disabilities,” which observes that the number of children with disabilities covered under private insurance declined by about 10 percent during from 2000 to 2008, while public insurance coverage increased. The two main public health insurance programs are Medicaid and SCHIP (known since 2009 as the Children’s Health Insurance Program or CHIP). Nearly half of children with special health care needs who have insurance are covered by one of these two programs; 90 percent are enrolled in Medicaid, the other 10 percent in CHIP. These are among several programs that provide health services for children disabilities. As Child Trends points out, “children with disabilities who are insured get more timely and comprehensive care, and that their parents are more satisfied with their child’s health care than are parents of children with disabilities who lack insurance.”

Mark Stabile and Sara Allin, in their Future of Children chapter, “The Economic Costs of Childhood Disability,” calculate that the direct costs to families, the indirect costs through reduced labor supply, the direct costs to disabled children as they age into the labor force, and the costs of safety net programs for children with disabilities all together average $30,500 a year per family with a disabled child. They note that the cost estimates on which they base their calculation vary widely depending on the methodology, jurisdiction, and data used.

Regarding education advances, Future of Children’s Laudan Aron and Pamela Loprest point out in their article, “Disability and the Education System,” that the special education system has given children with disabilities much greater access to public education, established an infrastructure for educating them, helped with the earlier identification of disabilities, and promoted greater inclusion of these children alongside their nondisabled peers. Despite these advances, many problems remain, including the over- and under-identification of certain subgroups of students, delays in identifying and serving students, and bureaucratic, regulatory, and financial barriers that complicate the program for everyone involved.

Despite improvements in recognition, early intervention, diagnosis, and a range of treatment and intervention programs, significant social disparities persist. The negative implications for health care, dependency, and educational costs of a growing number of disabled children lend urgency to our efforts to better understand and address, this growing health, economic and social liability (Future of Children).