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Health care financing for severe developmental disabilities.
A Birenbaum1, D Guyot, H J Cohen
1St. John's University, New York.
Monographs of the American Association on Mental Retardation
|January 1, 1990
Summary
This study analyzes healthcare utilization and costs for children with autism and severe mental retardation, finding significant underutilization of preventive services and substantial family burdens. These findings are crucial for healthcare financing reform for children with lifelong conditions.
Area of Science:
- Developmental Disabilities
- Healthcare Economics
- Public Health Policy
Background:
- Absence of comprehensive national data on healthcare services and expenditures for children with autism and severe mental retardation previously hindered policy development.
- Lifelong conditions necessitate understanding long-term care needs and financial implications for affected children and their families.
Purpose of the Study:
- To analyze healthcare service utilization, associated expenses, and payment sources for children and young adults with autism and severe/profound mental retardation.
- To provide data for policymakers to inform healthcare financing system reforms for severely developmentally disabled children.
- To highlight the underutilization of preventive and habilitative services and the significant burden on families.
Main Methods:
- Comparison of 1985-86 data from 308 children/young adults with autism and 326 with severe/profound mental retardation to national data (1980 MNCUES, 1987 NMES) using similar methodologies.
- Detailed analysis of healthcare service use, costs, and payer information.
- Assessment of preventive care, habilitative services, and family support needs.
Main Results:
- Average annual healthcare expenditures for children with autism were ~$1,000, and ~$1,700 for young adults, significantly higher than the $414 average for all US children.
- Children with severe retardation incurred average annual healthcare costs of ~$4,000, largely due to physical impairments.
- Hospitalization rates were double the national average for autistic individuals and significantly higher for those with severe retardation; preventive and habilitative services were underutilized, and family support needs were substantial.
Conclusions:
- Existing healthcare financing systems may not adequately address the needs and expenditures of children with severe developmental disabilities.
- Significant gaps exist in the utilization of preventive and habilitative services, indicating a need for improved access and integration into care.
- The findings underscore the critical need for policy reforms that consider the comprehensive needs, including personal care and family support, for children with autism and severe mental retardation.