Structure, Use & Expenditures for Autism Services

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DESCRIPTION (provided by applicant): This research study seeks to develop a services research approach to understanding the structure, utilization, and expenditures for the care and treatment of autism. The three-year study, which will be carried out in conjunction with Division TEAACH at the University of North Carolina, has several components. First, a conceptual and analytical framework for identifying the formal and informal services accessed by families with autistic children will be developed from literature syntheses, key informant interviews, and focus groups. Second, a telephone survey protocol will be developed drawing upon the Medical Expenditure Panel Survey (MEPS) and other service utilization instruments. Third, the telephone survey will be fielded in North Carolina with a sample of families with an autistic child (N= 480) in one of three age groups (less than 3 yrs., 3-5 yrs., and 6-8 yrs. (about 160 cases in each strata). The sample will be drawn to capture variations in the geographic, socioeconomic, and diagnostic distribution of the target population. Fourth, the analysis of survey data in conjunction with information obtained from selected service providers (via focus groups at national meetings) will be used to design an R01 application for submission early in the 03-grant year. This application will propose a multi-site study (N= 6-8 sites) of service utilization for a linked sample of families and providers to develop comprehensive information about utilization and expenditures (both out-of-pocket and third-party) for a diverse array of services and community settings. Fifth, in addition to the multi-site study, the work carried out in this project will contribute to University-wide efforts to develop a research program on interventions and services research on autism. This application uses the R21 mechanism because an established research team is extending its work into a new area-from mental health services and special education into autism-and because this initial research will develop data upon which significant future research will be built. This work will provide basic information to clinical researchers and policymakers regarding which treatments are utilized, by whom, in what combinations, and under what circumstances. This research can inform clinical trials and future demonstration projects of new treatments since we will be able to demonstrate the current utilization patterns, which may involve multiple medical, educational, and behavioral treatments, as well as use of complementary and alternative treatments.