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.

Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009–2010

“…Our finding that a greater proportion of publicly insured CSHCN reported that costs were reasonable by the end of the decade, while the converse was true for those with private insurance is consistent with previous research showing that private insurance coverage among CSHCN was associated with a significant increase in both absolute and relative out-ofpocket health care expenses between 2001 and 2009-2010, while public coverage was associated with only a modest increase in absolute expenditures and a decline in relative expenditures. 25 Despite the improvements in adequacy overall, and among those with public coverage in particular, our results highlight persistent challenges with respect to the adequacy of insurance faced by the most severely affected CSHCN. 10,11 Nearly 30% of CSHCN have conditions that consistently affect their daily activities a great deal.…”

Characteristics of Rural Children Admitted to Pediatric Hospitals

“…[41][42][43] For rural families in low-income neighborhoods caring for a recently hospitalized child with chronic illness could lead to additional financial stress, especially if higher out-of-pocket health care expenses are incurred. [44][45][46] Furthermore, some of these areas may not have access to local social work or care management services for help. 47,48 As a result, rural children from economically challenged families may experience difficulties adhering to a discharge care plan, especially a plan that is associated with copayments for medications, equipment, and follow-up visits.…”

Family Impacts Among Children With Autism Spectrum Disorder: The Role of Health Care Quality

“…For instance, family impacts may have lessened as younger and relatively healthier children are diagnosed with ASD, or may have increased as children with ASD have become more medically complex, or as health care benefits have become less generous. 19 Likewise, health care quality may have changed: quality may have improved as providers become more familiar with ASD, or deteriorated as health and educational systems become overburdened by children with ASD.…”