Children with chronic conditions in the 21st century

The care of children who have chronic conditions should focus on improving the lives of the children and their families. This is accomplished most effectively through community-based, family-centered care. Critical issues for these children and families in entering the next century include the level of insurance, content of benefits package, level of evidence required for health insurance reimbursement, preparation of and incentives for health care professionals, roles being demanded of families. As the richest country in the world, we should be able to (1) provide universal coverage, (2) guarantee a comprehensive benefits package that applies a child-specific standard of medical necessity, (3) establish criteria for requiring insurers to reimburse for new effective therapies, (4) develop strategies for overcoming professional barriers, and (5) create mechanisms for compensating family caretakers for their care.