Abstract

To examine the relationship between measures of state economic, political, health services, and Title V capacity and individual level measures of the well-being of CSHCN. We selected five measures of Title V capacity from the Title V Information System and 13 state capacity measures from a variety of data sources, and eight indicators of intermediate health outcomes from the National Survey of Children with Special Health Care Needs. To assess the associations between Title V capacity and health services outcomes, we used stepwise regression to identify significant capacity measures while accounting for the survey design and clustering of observations by state. To assess the associations between economic, political and health systems capacity and health outcomes we fit weighted logistic regression models for each outcome, using a stepwise procedure to reduce the models. Using statistically significant capacity measures from the stepwise models, we fit reduced random effects logistic regression models to account for clustering of observations by state. Few measures of Title V and state capacity were associated with health services outcomes. For health systems measures, a higher percentage of uninsured children was associated with decreased odds of receipt of early intervention services, decreased odds of receipt of professional care coordination, and increased odds of delayed or missed care. Parents in states with higher per capita Medicaid expenditures on children were more likely to report receipt of special education services. Only two state capacity measures were associated explicitly with Title V: states with higher generalist physician to population ratios were associated with a greater likelihood of parent report of having heard of Title V and states with higher per capita gross state product were less likely to be associated with a report of using Title V services, conditional on having heard of Title V. The state level measure of family participation in Title V governance was negatively associated with receipt of care coordination and having used Title V services. The measures of state economic, political, health systems, and Title V capacity that we have analyzed are only weakly associated with the well-being of children with special health care needs. If Congress and other policymakers increase the expectations of the states in assuring that the needs of CSHCN and their families are addressed, it is essential to be cognizant of the capacities of the states to undertake that role.

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