Measuring Care Coordination for Children at Risk of Developmental Delay: Challenges and Opportunities

The use of evidence-based tools is increasing for screening infants and young children for potential developmental delays, and more children with delays are being identified early, when intervention is most effective. But there are significant challenges to following up on screening results, and many children do not receive the services they need. Measures are needed to assess care coordination structures, processes and outcomes and that incorporate the perspectives of the patient and family, of the primary care provider (PCP), of early intervention or other non-medical providers and of the state. These perspectives reflect distinct interests and accountabilities. Health information technology (IT) has the potential to significantly improve coordination of care and its measurement, but underlying differences in professional culture, fragmented financing, conflicting privacy protections and inadequate infrastructure for measurement must be resolved if before substantial gains can be made. This paper specifically addresses measurement of care coordination for children at risk of developmental delays, but we believe there is significant application to other populations, such as other children with special health care needs, persons with severe disabilities and persons with chronic conditions. Project background Developmental delays affect 12 percent–18 percent of children in the United States. 1,2 When left untreated, they can result in challenges throughout life, including behavioral problems, school failure and social or emotional problems. 3 Early detection and intervention are key to ensuring a child’s healthy developmental trajectory. 3,4 Indeed, this period of development is so critical that in 1984 Congress established a program for infants and toddlers with disabilities (Part C of the Individuals with Disabilities Education Act). This federal grant program helps states operate comprehensive early intervention services for infants and toddlers with disabilities, ages birth to 3. The use of evidence-based tools is increasing for screening infants and young children for potential developmental delays, and more children with delays are being identified early, when intervention is most effective. There are significant challenges to following up on screening results, however. Numerous barriers to timely developmental services have been documented: fragmentation of services; eligibility gaps among different programs and delivery systems; lack of knowledge about Part C Early Intervention (Text Box 1) and other referral resources among pediatric primary care providers ; lack of funding for services to children at risk (without a diagnosis); limited capacity to support resources from pediatric primary care to other providers; and shortages of providers, particularly for social-emotional or mental health services. 5,6