Developing Comprehensive Statewide Disability Information Systems

Abstract

Enhancing information capacity that can be used to improve services for people with disabilities remains an ongoing public health challenge. Research that can lead to improved state data systems for this population is still in its infancy. In this exploratory study, we have identified common characteristics needed to manage program services within one state's provider network and proposed a conceptual framework for developing a statewide system. We identified three broad information areas: assessment, administration, and assurance. Linking data elements to a program's information deficiencies allows lead state agencies responsible for public health functions for persons with disabilities to facilitate administrative coordination between programs having mutual information and management needs. By implementing strategies that share information without jeopardizing program autonomy, states can improve services for people with disabilities. Incorporating this framework extends the boundaries of a comprehensive disability information system beyond survey monitoring.