Objective. The purpose of this article is to report the findings of the National Survey of Children With Special Health Care Needs regarding parent perceptions of the extent to which children with special health care needs (CSHCN) have access to a medical home.
Methods. Five criteria, selected to reflect the characteristics of a medical home as defined by the American Academy of Pediatrics (AAP) policy statement on the medical home, were analyzed to describe the extent to which CSHCN receive care characteristic of the medical home concept. These criteria included having 1) a usual place for sick/well care, 2) a personal doctor or nurse, 3) no difficulty in obtaining needed referrals, 4) needed care coordination, and 5) family-centered care received. Items from the Survey were selected and clustered to characterize each of the 5 components. Criteria for each item were established with the requirement that the criteria must be met for all items in a component to receive credit for the component.
Results. Results of the survey indicate that 1) approximately half of CSHCN receive care that meets all 5 components established for medical home; 2) most CSHCN have a usual source of care and a personal doctor or nurse, but other components of the medical home, especially elements of care coordination and family-centered care, are lacking; 3) access to a medical home is significantly affected by race/ethnicity, poverty, and the limitations imposed on daily activity by the child’s special health care need; and 4) parents of children who do have a medical home report significantly less delayed or forgone care, significantly fewer unmet health care needs, and significantly fewer unmet needs for family support services. The 5 components described represent major characteristics of the comprehensive care model recommended for all children by the AAP.
Conclusions. The findings suggest that although some components of the medical home concept have been achieved for most CSHCN, the comprehensive care model described by the AAP policy statement on the medical home is not yet in place for a significant number of CSHCN and their families.
Health Care Transitions Among Youth With Disabilities or Special Health Care Needs: An Ecological Approach
