The Data Resource Center, keeper of this data, is a project of the Child and Adolescent Health Measurement Initiative housed in the Oregon Health & Science University Department of Pediatrics

A new government survey reveals children with special health care needs, such as autism, attention deficit hyperactivity disorder and asthma, don't consistently get the care that is federally recommended and that there are vast state-to-state differences. This is the first time standardized data at the national and state level has been available to the media and families in an easily accessible way.

"Parents of children with special health care needs often have obstacles in getting the information they need," said Christina Bethell, Ph.D., director of the Data Resource Center and associate professor of pediatrics in the Oregon Health & Science University School of Medicine. "The Maternal and Child Health Bureau, which designed and sponsored this survey, is committed to making this data available to the public, parents and media through the Data Resource Center, where you can find specific information about how your state fares in an easy-to-use Web site."

The survey is especially significant because it finds that more than 10 million American children have a special health care need -- that amounts to one in five households with children younger than 18. While states perform well in specific areas, no state is providing all of the recommended care to the majority of their children with special health care needs.

These differences found between states are cause for concern. For instance, in Kansas, just 28 percent of children younger than 12 with special health needs receive care that meets all five of the performance measures recommended by the federal government. By contrast, in Montana, only 13 percent of children with special health care needs meet all five of these measures. For adolescents, the best-performing state was New Hampshire and the worst was Mississippi.

In addition to state-by-state comparisons, the Data Resource Center Web site housed at OHSU allows media and families to search by other factors such as income or race/ethnicity. The public and others are encouraged to take advantage of the federally funded Data Resource Center for Child and Adolescent Health Web site at childhealthdata/.

Additional findings of the survey include:

* While nearly all children with special health care needs have some type of health insurance, 3.3 million are underinsured. The health benefits packages for one-third of currently insured children with special health care needs do not adequately cover needed services or have reasonable co-pays.

* Only one-third of children with special needs who are Hispanic or who are living below the federal poverty level get coordinated and family-centered care from their health care providers.

* Out-of-pocket medical costs exceeded $1,000 for 1 in 5 children with special health care needs during 2005-06.

* Family members of nearly 2.5 million children with special health care needs had to cut back or stopped working because of their child's health conditions.

In the National Survey of Children with Special Health Care Needs, 40,465 families were interviewed, covering an average of 800 or more children with special health care needs younger than 18 in each of the 50 states and the District of Columbia.

To start searching the data in your state, click here.

For more details about how the survey was conducted, click here.

For a fast glimpse of your state's profile, click here.



Oregon Health & Science University is the state's only health and research university, and Oregon's only academic health center. OHSU is Portland's largest employer and the fourth largest in Oregon (excluding government), with 12,400 employees. OHSU's size contributes to its ability to provide many services and community support activities not found anywhere else in the state. It serves patients from every corner of the state, and is a conduit for learning for more than 3,400 students and trainees. OHSU is the source of more than 200 community outreach programs that bring health and education services to every county in the state.

Source: Tamara Hargens-Bradley
Oregon Health & Science University