Children with complex chronic medical conditions and special needs privately insured through an HMO

The objective of this study was to determine for children with selected complex chronic medical conditions and special needs, who are insured privately by a managed care organization, those services received in and out of plan; who provides and pays for services; family assessments of care; and managed care expenditures. The data came from two sources. Expenditures and service utilization were obtained from the HMO claims records, and families perspectives on care and service delivery were obtained through interviews and a survey. Results show that the greatest HMO expenditure was for hospitalizations. Schools played a significant role in providing and financing rehabilitation therapies. Many families paid for supplemental government insurance to obtain a portion of their child's services that were typically associated with special needs. Families reported high levels of stress associated with the fragmentation of care and dealing with multiple agencies and providers. Implications from this study suggest that the healthcare delivery system for children with complex chronic medical conditions and special needs is currently very compartmentalized, and managed care benefits may not be comprehensive enough to meet the complex and varied needs of this population, In managed care arrangements, families are likely to incur greater than normal expenses from co-payments for the multiple services their child receives. The study points to the need for better coordination of care between bureaucracies, blending of private and public resources, and incentives to restructure the current system.