Leading Health Indicator 3 Children with Special Health Care Needs (CSHCN) Florida 2010 Goal for Children and Youth Provide access to a family-centered, coordinated managed system of care for children with special health care needs. Empower families and children to participate in their health care decisions HP 2010 Goal for Disability and Secondary Conditions Promote the health of people with disabilities, prevent secondary conditions and eliminate disparities between people with and without disabilities in the U.S. population

Florida's goal to ensure every child with special health care needs access to quality health services requires establishing statewide systems that can identify children with CSHCN from birth to adulthood and monitoring the system that cares for CSHCN. Newborns are screened at birth for high risk conditions that require special health care. Children who have access to health care through a medical home are more likely to be screened throughout their childhood and adolescence. Another major effort in Florida occurs through the KidCare child health insurance application process, where families are asked to identify a child with special health care needs.

With so much at stake for children, there is a need to evaluate the progress in identifying CSHCN. Nationally and in Florida, efforts have been made to standardize definitions and measures. While there is no definitive number, prevalence measures range between 5 percent and 30 percent depending on definitions and whether only severely affected children are included or whether children with ongoing conditions that are under control but need monitoring are included. In Figure 25, the results of a survey by Shenkman and Bono (2002) are displayed.⁽¹⁾   Approximately 2,770 Florida families in all 67 counties with children below age 18 were interviewed by telephone using the Children with Special Health Care Needs (CSHCN) Screener — a five-part, 15-item screening tool approved by the National Commission on Quality Assurance (NCQA) to identify CSHCN.

Families were asked five questions on any special health conditions for which they (1) used medicine prescribed by a doctor, (2) received medical care, (3) received special therapy, (4) had limited function, (5) had a behavioral problem. If families said yes to any of the questions, they were also asked if the condition was expected to last over 12 months. The researcher, Shenkman (2002), ⁽¹⁾   commented that while nearly 30 percent of Florida families with children were found to have a condition lasting over 12 months, while similar U.S. surveys yielded an 18 percent prevalence. Further analyses are being conducted to understand the large differences between U.S. rates and Florida rates. With a voluntary insurance program (like SCHIP), families who believe their children have special health care needs may be more likely to enroll their children in the program.

Figure 25: Prevalence of Florida and U.S. with a CSHCN or Chronic Condition Using the CSHCN Screener Source: E. Shenkman, and C. Bono (2002) Results From The Statewide Children's Health Insurance Survey - Phase 1: A report prepared for the Healthy Kids Board of Directors. Institute for Child Health Policy.

Identifying children with special health care needs is important to maximize development and avoid the development of secondary conditions. Note: Five questions are asked to determine a child's dependency in three domains: medication, services used and functional limitations.