Financial burden among families of children with special health care needs over time: Results from the 2001, 2005-06, and 2009-10 National Surveys of Children with Special Health Care Needs

Background: Caring for a child with special health care needs (CSHCN) is associated with both subjective and objective measures of family financial burden. This study updates previous research and assesses temporal changes in the prevalence and distribution of burden over the last decade.

Methods: Data are from 2001, 2005-06 and 2009-10 National Surveys of Children with Special Health Care Needs. Measures included: out-of-pocket expenses ≥ $1,000, perceived financial problems, employment changes related to care-giving, and time spent providing/coordinating care. Estimates were calculated by survey year and selected covariates; significant changes over time were assessed using chi-square tests and absolute and relative measures of difference. The association between burden and insurance status was further investigated through stratified and multivariable analyses.

Results: In 2009/10, approximately one-quarter of CSHCN families experienced some form of financial burden. The proportion that paid ≥ $1,000 out-of-pocket increased significantly over the decade while the proportion that experienced employment changes decreased significantly. Publicly insured children were significantly less likely to experience financial burden. Stratified analyses showed that the likelihood of paying high out-of-pocket expenses increased 2.5 times over the decade for privately insured CSHCN compared to 1.5 times for those publicly insured or uninsured; adjusted analyses confirmed these and other disparities.

Conclusion: Recent data suggest that financial burden remains high among CSHCN families with few indications of improvement over the past decade. The risk of experiencing such burdens increased significantly for privately-insured CSHCN. Public insurance expansions may have buffered the rise in financial burden over the decade.