A Data Driven Process in Washington State to Improve Systems of Care for Children With Special Health Care Needs: The National Survey of CSHCN

Objectives: The purpose of this article is to present strategies used in one state to engage public health stakeholders in the use of National Survey of Children With Special Health Care Needs (NS-CSHCN) results to improve systems of care for children with special health care needs (CSHCN). This is not a research report. Methods: Seven “CSHCN Road Shows” were conducted with 39 local health departments, five state agencies, five parent leaders, three managed health care plans, and 12 school nurses. These “CSHCN Road Shows” were used to present and validate Washington State findings from the NS-CSHCN, obtain input on additional topics for analysis and elicit ways of incorporating NS-CSHCN results into the state’s MCH Five Year Needs Assessment. Results: Overall, a majority of stakeholders reported a high level of interest in using state-level data from the NS-CSHCN for local community efforts. Uses included program planning, presenting data to local boards of health and other community agencies, and utilizing results as talking points with other partners on the needs and unmet needs of the population. The state Title V office used feedback from “CSHCN Road Show” participants to prioritize program-planning activities, initiate policy discussions, and incorporate feedback into the MCH Five Year Needs Assessment. Conclusions: State-level data from the NS-CSHCN are a rich source of information for driving improvements in systems of care, facilitating state and local program planning efforts, writing grants, and completing MCH Five Year Needs Assessment activities.