Children With Special Health Care Needs Enrolled in the State Children’s Health Insurance Program (SCHIP): Patient Characteristics and Health Care Needs

Abstract

Background. Children with special health care needs (CSHCN) often require more extensive services than children without special needs. The State Children’s Health Insurance Program (SCHIP) in many states typically provides less extensive benefits and services than do state Medicaid programs. To design SCHIP to address the needs of CSHCN adequately, it is important to measure the degree to which children who enroll in SCHIP have special health care needs and to assess their health status and unmet health care needs. Little is known about the characteristics or preenrollment experience of CSHCN who enroll in SCHIP. Objectives. To use data from the Child Health Insurance Research Initiative to measure the prevalence of CSHCN in SCHIP in 4 states, describe their demographic and health care features at enrollment, and compare their sociodemographic characteristics, health status, prior health care experiences, and unmet needs versus children without special health care needs. Methods. Children (0–18 years old) newly enrolled in SCHIP in 4 states were eligible for the study: New York, Florida (adolescents only), Kansas, and Indiana (CSHCN only). Telephone interviews were conducted shortly after enrollment and identified CSHCN by using the Child and Adolescent Health Measurement Initiative CSHCN screener. A common set of core questions assessed demographic characteristics, health status, special health care need status, insurance experience, access, use, quality of health care, and unmet needs during the year before enrollment. Bivariate and multivariate analyses were used to compare characteristics of CSHCN with characteristics of children without special needs. Results. Interviews were completed for parents of 5296 children enrolled in SCHIP in the 4 states. By using the Child and Adolescent Health Measurement Initiative CSHCN screener, the prevalence of CSHCN among SCHIP enrollees was 17% (New York), 18% (Florida), and 25% (Kansas), higher than the prevalence of CSHCN reported in the general population in those states. More than half of CSHCN reported the use of a chronic medication. Demographic characteristics of CSHCN were similar to those of children without special needs, although CSHCN were more likely to reside in single-parent households. Although CSHCN had poorer health status than children without special needs, many CSHCN were reported to be in good health, suggesting a wide spectrum of severity of illnesses within the CSHCN group. Although CSHCN were more likely than children without special needs to have been insured before SCHIP, a large proportion of CSHCN were nevertheless uninsured for at least 12 months before SCHIP (New York, 56%; Florida, 68%; Kansas, 24%; Indiana, 25%). Although most SCHIP enrollees had a usual source of care (USC) before SCHIP and there was some variation across states, between 4% and 13% of CSHCN lacked a USC on enrollment, and 23% to 38% of CSHCN changed their USC after enrollment in SCHIP. The majority of all SCHIP enrollees (including CSHCN) had used some health care during the year before SCHIP including preventive, acute, or specialty care. A high proportion of all SCHIP enrollees, including >30% to 40% of CSHCN, were reported to have unmet health care needs at enrollment in SCHIP. A variety of unmet needs were reported by CSHCN including specialty care, mental health care, dental care, and prescription medications. Nevertheless, the vast majority of CSHCN as well as children without special needs rated the quality of their medical care before SCHIP highly on several specific quality measures. Findings from multivariate analyses were similar to bivariate results with CSHCN in several states having higher use of care and more unmet health care needs before enrollment. Conclusions. SCHIP is enrolling many CSHCN, with the prevalence of these children occurring at least as high as the prevalence of CSHCN in the general population. CSHCN enrolled in SCHIP represent a heterogeneous population with a wide range of health status and health care needs. Although most CSHCN were already connected to the health care system with a USC and prior health care visits, many had unmet health care needs before enrolling in SCHIP. Implications for Monitoring and Improving SCHIP for CSHCN Enrollees. 1) SCHIP benefit packages need to adequately cover services required by CSHCN such as prescription medications and specialty, mental health, developmental, and home services; 2) because utilization of care will be high among this large group of children, alternative methods of financing and managing care should be considered such as risk adjustment and special programs that involve case management and care coordination; 3) coordination of care across programs (such as between SCHIP and the state Title V Maternal and Child Health Services program, a component of which serves CSHCN) and ensuring adequate access to primary care and specialty providers might improve access to services for CSHCN; and 4) it is critical to monitor the quality of care for CSHCN enrolled in SCHIP, because these children are among the most vulnerable children covered by public health insurance programs and many of them are enrolling in SCHIP.