Using the Colorado birth defects monitoring program to connect families with services for children with special needs

The Community Notification and Referral Program (CNRP), which operates from within the state's birth defects monitoring and prevention program, links children and their families with local public health and early childhood agencies, which then inform families of services and resources in their home communities. In Colorado, many communities have developed systems for identifying, screening, evaluating, and providing services to children with developmental delays or other special needs. CNRP uses the existing infrastructure of services for children with special needs by notifying local community programs of children reported to the birth defects program with birth defects, developmental disabilities, or risks for developmental delay. Children to be referred to local agencies are identified from the birth defects registry on the basis of diagnosis and residence. Minor or lethal conditions are excluded from referral. CNRP provides the child's name, date of birth, address, phone, guardian, diagnoses, date and source of diagnosis, and length of stay to the local agency. A parental consent process is used under some circumstances.

CRCSN analyzed data from 1621 children referred to local agencies in 1998. The local agencies contacted 34.1% of the families and referred 46.9%. of those contacted to early intervention, developmental, evaluation, or other services. They determined that 29.5% could definitely or moderately benefit from developmental services. In a telephone survey of families, 65.4% said they had learned about services, resources, or developmental screening about which they had not been aware.

CRCSN has developed a notification and referral program to link families with services for children with special needs that could serve as a model for other birth defects registries.