Delayed and forgone care for children with special health care needs in New York State.

OBJECTIVE: To identify characteristics associated with delayed/forgone care for children with special health care needs (CSHCN) in New York State (NYS) as reported by their parents.

METHODS: Data come from NYS participants in the 2000-2002 National Survey of Children with Special Health Care Needs. Data were analyzed using weighted bivariate and multivariate regression models. The dependent variable was report of delayed/forgone routine health care. Independent variables included illness characteristics, potential and actual access to care, and provider care characteristics.

RESULTS: In NYS, 8.4% reported delayed/forgone health care for their child. Parents of children with delayed/forgone care were more likely to report that their child was uninsured (adjusted odds ratio [aOR] 3.8, 95% confidence interval [CI] 1.3-11.8), had experienced interrupted health insurance (aOR 3.9, 95% CI 1.5-9.7), or their child's insurance was not adequate for CSHCN (aOR 3.6, 95% CI 1.4-9.1). Further, these parents were more likely to report that providers never spend adequate time (aOR 6.3, 95% CI 1.2-34.4), provide sufficient information (aOR 8.0, 95% CI 2.5-25.0), act as partners in care (aOR 6.7, 95% CI 2.3-19.7), or display cultural sensitivity (aOR 5.4, 95% CI 1.2-24.3).

CONCLUSIONS: An estimated 40,771 NYS CSHCN experience delayed/forgone routine health care. Their families report two noteworthy barriers: inadequate or discontinuous insurance coverage and poor communication with health-care providers. Access to care for CSHCN can be improved by increasing consistent comprehensive insurance coverage and increasing sensitivity in relationships between health care providers and families of CSHCN.