Back to Annual Meeting Page		American Public Health Association 133rd Annual Meeting & Exposition December 10-14, 2005 Philadelphia, PA

Abstract #109320

Kathleen C. Thomas, MPH, PhD¹, Alan Ellis, MSW², Carolyn McLaurin, MSW, RN², and Joseph Morrissey, PhD². (1) Cecil G. Sheps Center for Health Services Research, University of North Carolina, Chapel Hill, 101 Conner Dr. Ste. 302, Willowcrest Bldg., CB #3386, Chapel Hill, NC 27599-3386, (919)966-3387, kathleen_thomas@unc.edu, (2) Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, 101 Conner Dr. Ste. 302, Willowcrest Bldg. CB # 3386, Chapel Hill, NC 27599-3386

Autism services are provided in a variety of service settings including medicine, special education, auxiliary therapeutic services and via an informal 'cottage' industry of providers. Public schools provide a core set of autism-related services, but there is little current information available about how the wide array of services used outside school are paid for. Private insurance and state and local programs cover some types of care, but coverage and budgetary limitations imply that they do not provide for the entire cost of covered services. In this situation, families may be paying for a sizable portion of the costs of care for autism. This study seeks to extend our understanding of autism service use and family out of pocket expenditures through prospective data collection. A detailed expenditure reporting format for autism-related services was developed so that families can record their expenses prospectively with the help of a record keeping system. This data collection method is now being field tested with a cohort of 150 families with a 10 or 11-year old child with autism. Families were recruited from a subject registry and a variety of community settings including schools, clinics, advocacy and support groups. Preliminary findings suggest that families make out of pocket contributions to costs of care for every one out of three services used. Families pay over $2,000 on average for autism-related services annually; some lower income families spend proportionately much higher amounts than others. Findings raise important equity issues for families with a child with autism.

Learning Objectives:

• Evaluate the pros and cons of a prospective data collection method based on formalized record-keeping for families with a child with autism.
• Describe family out-of-pocket expenditures for autism-related services and their distribution by household characteristics.
• Assess the implications of variations in family expenditures for policy and practice.

Presenting author's disclosure statement:

I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.

Recorded presentation