Association for Public Policy Analysis & Management

Background: Data collected by states to administer programs is an underused resource available to stakeholders to influence policy planning at the state and local levels. Data are routinely collected by states for billing, internal tracking, and reporting purposes; however barriers exist to share data and collaborate. The dramatic increase in autism spectrum disorder (ASD) in the last three decades has left states scrambling for answers and information on how to create effective policy. To fill this gap, the Pennsylvania Bureau of Autism Services commissioned a statewide autism administrative prevalence effort to capture the number of individuals with autism living in the commonwealth and to describe their characteristics. By engaging with state policymakers and using innovative data methods, the Pennsylvania Autism Census Project has been able to identify individuals with autism and produce among the first policy documents to help define and drive policy.

Methods: Medicaid claims and encounters include extensive detail to allow for identifying individuals as well as tracking eligibility and service use over time. Using Medicaid data and linking it to multiple other data sets, including children and youth services (foster care), juvenile justice and criminal records, education records, and other offices under the Department of Human Services, has yielded information to support the generation of policy and program planning. Methods such as probabilistic matching and time trend analysis have been employed to produce applied estimates of autism prevalence. The lack in peer-reviewed research to support the generation of policy results in the Pennsylvania Autism Census being a key source of information, especially to define and characterize the rapidly growing group of adults with autism. Through this work, best practices in data extraction, cleaning, and analytics were applied to existing data to create a rich dataset that can be analyzed to serve research purposes and the goals of policy partners.

Results: The PA Autism Census Project found that over 55,000 individuals with autism were receiving publicly funded services as of the data collection point in 2011. This represented a substantial increase from the initial findings of 19,862 individuals with autism receiving publicly funded services in 2005. Among the 55,000 found in 2011, 38,974 interacted with the education system, 35,713 with the Department of Human Services (which oversees Medicaid), 1,705 with the Office of Vocational Rehabilitation, 1,933 with the Office of Children Youth and Family, and 500 with the justice system.

Policy Implications: These results represent among the first and largest compilations of data on individuals with autism to date and provided valuable baseline information for policymakers, which has helped Pennsylvania become a leader nationally, particularly in the arena of providing services to adults with autism. Using data to communicate with policymakers has yielded promising collaborations and reforms across service areas to improve the experiences of individuals with autism and their families throughout Pennsylvania. Offering training and customized data analytics has shown that research processes can be valuable additions to the policymaking process and leads to the incorporation of cutting edge research into public service systems.