Services for Children with Congenital Facial Clefts Through a State Crippled Children's Service Program

Abstract

A study to analyze the involvement of the Maryland State Crippled Children's Services (CCS) with children with congenital facial clefts was conducted in two parts. The first phase identifies all children born to Maryland residents over a three-year period to measure the incidence by type of the cleft condition. Phase two examines CCS involvement for 816 children with congenital facial clefts, including 114 of the Phase 1 cohort group. Diagnostic and demographic data are analyzed with specific attention to services involved in the child's entry into, flow through, and discharge from the CCS program. The 816 study cases known to the Maryland CCS Program during the period of study were characterized by the presence and type of parental congenital malformations, reasons for termination of CCS services, number of professional encounters, age at entry, distances to CCS care providers, demographic characteristics, and hospitalization history. Data analysis suggests that the age at which a child first becomes known to the CCS Program is significantly associated with areas of residence, presence of other malforma-tions, type of cleft, and presence of other malformations in the family. The data further suggest that CCS Programs reassess their capacity to develop administratively useful data for use in program planning, evaluation, and research. The present systems appear to require further alteration for updating and expansion to increase the availability of useful, timely, and accurate programmatic data.