Challenges in long-term health care for children

More children with chronic conditions are surviving than in previous times, and many have serious and significant ongoing health care needs. This paper reviews 1) the population characteristics of children with chronic health conditions in terms of the epidemiology and their sociodemographic profiles; 2) the implications of children's development on their needs, on caretaker roles and responsibilities, on the concept of medical necessity, and on service systems; 3) financing issues and service options for long-term care; and 4) strengths and limitations of existing mechanisms for monitoring the quality of services provided. The following discussion highlights the need for 1) improved data on the numbers of children who need and receive different types of long-term care; 2) better coordination of services and creation of a workable system; 3) a child-specific standard of medical necessity in defining service eligibility; 4) better support systems for families caring for children with long-term needs in non institutional settings; and 5) improved consistency in the mechanisms for financing of care for these children. More attention also should be focused on developing ways of monitoring the quality of long-term care provided. Addressing these needs would go a long way toward improving the quality of long-term care for infants, children, and adolescents.