Economic Well-Being System that will replace the Survey of Income and Program Participation.

Remedying gaps in knowledge about disability among children is another important direction for a national disability monitoring program. As this chapter and the next make clear, the data on children with disabilities are limited. Moreover, as described in Chapters 4 and 5, policy makers, clinicians, educators, and families lack key longitudinal data on the relationship between childhood conditions, physical and social environments, medical treatments, and other events and the long-term functioning and well-being of children as they move into and through adult life. The inclusion of children in a new CDC panel study of disability and the incorporation of measures of disability among children into the Behavioral Risk Factor Surveillance System would help remedy some of these gaps.

The committee’s recommendations to this point focus on the “data production” side of the disability monitoring system. The use of the data for monitoring and other purposes is also important. Although agencies generally make their data available for use by others, it would be helpful for users to have access to some kind of data or information intermediary that would simplify and support user access to the resources of multiple agencies. The NIDRR-supported disability statistics center at Cornell University has taken steps in this direction by preparing guides to disability statistics sources (e.g., the American Community Survey) and data summaries (e.g., annual disability status reports). The center will also develop options for activities to bridge the divide between users and sources of disability data. One possible prototype for such an activity is the Research Data Assistance Center at the University of Minnesota (www.resdac.umn.edu), which is supported by CMS to encourage researchers’ use of the agency’s data by supplying free technical assistance in obtaining and using the data.

This chapter has argued for the development of a common conceptual framework based on the ICF framework and a set of actions to strengthen the quality and usefulness of this country’s data on disability and to move toward the development of a coherent, coordinated, ongoing disability monitoring system. Good data are essential to understanding the current situation of people with disabilities, identifying problems, and creating the conditions for the independence and fuller participation of people with disabilities in all aspects of national life. Using data currently available from monitoring programs, the next chapter summarizes trends in disability among Americans in early, middle, and late life.