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The multihandicapped child with congenital rubella: impact on family and community
Insights
Despite extensive support, multihandicapped children with congenital rubella syndrome (CRS) rarely achieve independence. The lifelong costs of CRS disabilities remain substantial, though rubella vaccination has reduced new cases.
Area of Science:
- Pediatrics
- Public Health
- Special Education
Background:
- A hospital-based program was established in 1967 for children with congenital rubella syndrome (CRS).
- Over 214 children with CRS have been enrolled, with 59% having laboratory-confirmed infections.
Purpose of the Study:
- To assess the long-term needs and training outcomes for children with CRS.
- To evaluate the impact of CRS on families and community resources.
Main Methods:
- Analysis of enrollment data and long-term outcomes for children in a specialized education program.
- Assessment of the ongoing support requirements and associated costs for individuals with CRS.
Main Results:
- Children with CRS showed limited progress toward independence despite comprehensive educational and support services.
- The human and economic costs associated with severe rubella-induced disabilities are significant and ongoing.
- Rubella vaccination efforts since 1969 have led to a decline in CRS cases requiring program enrollment.
Conclusions:
- Extensive interventions have not enabled independence for most individuals with CRS.
- The long-term care needs and associated costs for CRS survivors necessitate continued support.
- The success of rubella vaccination programs is evident in the decreasing incidence of congenital rubella infections.
Abstract:
In 1967, a hospital-based education program was created to provide services to multihandicapped children with congenital rubella syndrome (CRS). Since then 214 children have been enrolled, including 126 (59%) with laboratory-documented congenital rubella infection. An assessment of the ongoing training and life needs of those children with CRS enrolled in the program and the concomitant impact on families and community facilities has documented the general failure of the children to progress toward independence in spite of extensive educational programs and support services. The human and economic costs of these severe rubella-caused disabilities already have been enormous and will continue to be so for many years because even in adulthood these victims will require 24-hr supervision and care. The extensive rubella-vaccination effort made since 1969 has resulted in a progressive decline in the percentage of children requiring enrollment in this program whose disabilities are due to congenital rubella. The last such enrollee was born in 1981.