In Pursuit of Assistance, Children with Disabilities Face Complex, Fragmented Service System

Newswise — In their new book "Meeting the Needs of Children with Disabilities," researchers Laudan Y. Aron and Pamela J. Loprest detail the challenges facing children with disabilities and their parents when these families try to navigate the multiple, complex public service systems intended to meet their multifaceted needs.

The authors underscore that while not a homogeneous group, children with disabilities are more likely than other children to live in poverty, live with only one parent, have parents who are in poor health or unemployed. Aron and Loprest cite statistics showing that over the last 14 years, the risk for disability has remained fairly constant for children at or above the poverty level, but has risen dramatically for poorer children (from 7.8 percent in 1983 to 11.1 percent in 1996). Thus, many children with disabilities and their families struggle with problems more complex than the disability alone.

The authors observe that several unconnected systems address children's medical, educational, and financial needs separately. However, each child often has multiple needs that are interconnected. For example, special education services are often less effective if a child lacks needed medical services or is hungry. Aron and Loprest write, "Programs and government systems tend to think narrowly about the specific area of need they focus on, while these children's and families' needs are broad."

Aron and Loprest also explain the incongruities and complexities among the federal and state services for this special population. Systems vary in terms of application processes, eligibility standards, and breadth of services, and there are numerous barriers to access. "The fragmentation of the current child disability service system makes it difficult for families to understand what benefits are available, how to access them, and how to piece together supports that best match their children's needs," write Aron and Loprest. The researchers note very little coordination of services among the top three federal programs for children with disabilities: Medicaid, special education, and Supplemental Security Income.

Aron and Loprest, however, also envision with optimism a model for service delivery that is more community based, family focused, and integrated. They recommend ways to better coordinate the three major federal programs serving children with disabilities, indicating that all taxpayers, not just the families served, could benefit from the improvements. They write, "A web of community programs would make the most of the billions of dollars the government spends to help children with disabilities."

Karen A. Kuhlthau, associate director of the Center for Child and Adolescent Policy at MassGeneral Hospital for Children, says, "This book examines barriers to improving the system of care, yet provides a vision for doing so. It is a useful read for those newly interested in children with disabilities, as well as the experienced."

Loprest is a principal research associate at the Urban Institute. Her current research focuses on policies to promote work for those with significant barriers, including current and former welfare recipients and adults with disabilities.

Aron is research director at the National Alliance on Mental Illness (NAMI). She joined NAMI after holding a senior research associate position at the Urban Institute. Besides children with disabilities, her expertise covers other vulnerable populations, including homeless people, disconnected youth, and victims of family violence and human trafficking.

Meeting the Needs of Children with Disabilities, by Laudan Y. Aron and Pamela J. Loprest, is available from the Urban Institute Press (paper, 6" x 9", 138 pages, ISBN 978-0-87766-746-9, $26.50). Order online at http://www.uipress.org, call 410-516-6956, or dial 1-800-537-5487 toll-free.

The Urban Institute is a nonprofit, nonpartisan policy research and educational organization that examines the social, economic, and governance challenges facing the nation.