Financial burden of raising CSHCN: association with state policy choices

Pediatrics. 2009 Dec;124 Suppl 4:S435-42. doi: 10.1542/peds.2009-1255P.


Objective: We examined the association between state Medicaid and State Children's Health Insurance Program (SCHIP) income eligibility and the financial burden reported by low-income families raising children with special health care needs (CSHCN).

Sample and methods: Data on low-income CSHCN and their families were from the National Survey of Children With Special Health Care Needs (N = 17039), with a representative sample from each state. State Medicaid and SCHIP income-eligibility thresholds were from publicly available sources. The 3 outcomes included whether families had any out-of-pocket health care expenditures during the previous 12 months for their CSHCN, amount of expenditure, and expenditures as a percentage of family income. We used multilevel logistic regression to model the association between Medicaid and SCHIP characteristics and families' financial burden, controlling state median income and child- and family-level characteristics.

Results: Overall, 61% of low-income families reported expenditures of >$0. Among these families, 30% had expenses between $250 and $500, and 34% had expenses of more than $500. Twenty-seven percent of the families reporting any expenses had expenditures that exceeded 3% of their total household income. The percentage of low-income families with out-of-pocket expenses that exceeded 3% of their income varied considerably according to state and ranged from 5.6% to 25.8%. Families living in states with higher Medicaid and SCHIP income-eligibility guidelines were less likely to have high absolute burden and high relative burden.

Conclusions: Beyond child and family characteristics, there is considerable state-level variability in low-income families' out-of-pocket expenditures for their CSHCN. A portion of this variability is associated with states' Medicaid and SCHIP income-eligibility thresholds. Families living in states with more generous programs report less absolute and relative financial burden than families living in states with less generous benefits.

MeSH terms

  • Adolescent
  • Child
  • Child Health Services / economics*
  • Child Welfare / economics
  • Child, Preschool
  • Cost of Illness*
  • Disabled Children / statistics & numerical data*
  • Eligibility Determination
  • Female
  • Financing, Personal / economics
  • Health Expenditures / statistics & numerical data*
  • Health Services Accessibility / economics
  • Health Services Needs and Demand / economics
  • Humans
  • Income
  • Infant
  • Infant, Newborn
  • Insurance Coverage / statistics & numerical data
  • Insurance, Health / economics
  • Linear Models
  • Male
  • Medicaid / economics
  • Multivariate Analysis
  • Poverty / statistics & numerical data
  • Public Policy
  • United States