Data systems and decision-making: State intellectual/developmental disability agencies and their employment data collection systems

Abstract

BACKGROUND: A growing emphasis on government accountability has increased interest in the collection and use of employment outcomes data. At the national level, data on employment for individuals with disabilities are available through multiple data collection systems. However, many disability data systems are fragmented and only loosely coordinated across agencies. OBJECTIVE: Research on states that support a high percentage of individuals in integrated employment suggests that a clear and visible data collection system that provides individual outcome data is critical (Hall, Butterworth, Winsor, Gilmore, & Metzel, 2007). This article offers a qualitative, in-depth look at how employment data is collected and used within four state intellectual/developmental disability agency systems. METHODS: Case study research focused on the development and use of data systems related to integrated employment and their relationship to agency priorities, decision-making, and policy development. RESULTS: Data systems reflected both new and ongoing priorities of state systems. States used their data and data systems to shape relationships with service providers; the frequency and consistency of data collection helped to cement relationships and underscore the importance of data. Research showed the importance of data both at the state and local levels. CONCLUSIONS: Findings suggest that the data collection process, as well as the data it produces, is critical in informing and promoting conversation about employment.