The need for care coordination among children with special health care needs in Illinois

The objectives of this study were: 1) to estimate the need for care coordination among children with special health care needs (CSHCN) in Illinois, 2) to assess the need for care coordination among CSHCN in Illinois by sociodemographic, condition-related, and access to care factors, and 3) to discuss approaches for meeting the need for care coordination.

The study included 745 Illinois families interviewed as part of the State and Local Area Integrated Telephone Survey (SLAITS) of CSHCN. Classifying families of CSHCN as needing care coordination was based on three survey questions. The prevalence of the need for care coordination among CSHCN in Illinois was examined overall and by sociodemographic characteristics, descriptors of the child's health condition, and measures of access to services. Multivariable modeling was carried out to jointly assess these factors and the need for care coordination.

In Illinois, 25.2% of CSHCN families reported a need for care coordination. Condition severity, need for supplementary/ancillary services, lack of insurance coverage and inadequate communication among providers were significantly associated with the need for care coordination (OR = 1.14, OR = 1.72, OR = 2.45, and OR = 3.08, respectively). Having a primary care provider/medical home was not associated with the need for care coordination in multivariable analysis.

Coordination of health services is important for all children and all adults, but it is particularly important for children with special health care needs. The variation in the need for care coordination both within and across states underscores the need for flexibility in program and policy development for CSHCN.