Financial and Nonfinancial Burden Among Families of CSHCN: Changes Between 2001 and 2009–2010

Abstract Objective We use the latest data to explore multiple dimensions of financial burden among children with special health care needs (CSHCN) and their families in 2009–2010 and changes since 2001. Methods Five burden indicators were assessed using the 2001 and 2009–2010 National Surveys of CSHCN: past-year health-related out-of-pocket expenses of ≥$1,000 or ≥3% of household income; perceived financial problems; changes in family employment; and >10 hours of weekly care provision/coordination. Unadjusted and adjusted prevalence estimates were used to assess burden in 2009–2010 and calculate absolute and relative measures of change since 2001. Prevalence rate ratios for each burden type in 2009–2010 compared to 2001 were estimated by logistic regression. Results Nearly half of CSHCN and their families experienced some form of burden in 2009–2010. The percentage of CSHCN living in families that paid ≥$1,000 or ≥3% of household income out of pocket for health care rose 120% and 35%, respectively, between 2001 and 2009–2010, while the prevalence of caregiving and employment burdens declined. Relative to 2001, in 2009–2010, CSHCN who were privately insured or least affected by their conditions were 1.7 times as likely to live in families that paid ≥3% of household income out of pocket, while publicly insured children were 20% less likely to do so and those most severely affected were 12% more likely to do so. Conclusions Over the past decade, increases in financial burden and declines in employment and caregiving burdens were observed for CSHCN families. Public insurance expansions may have buffered increases in financial burden, yet disparities persist.