• Paul W Newacheck, Moira Inkelas, and Sue E Kim.
• Maternal and Child Health Policy Research Center, Institute for Health Policy Studies, and Department of Pediatrics, University of California, San Francisco, San Francisco, California, USA. pauln@itsa.ucsf.edu
• Pediatrics. 2004 Jul 1; 114 (1): 79-85.

ObjectiveTo examine health care utilization and expenditure patterns for children with disabilities.MethodsSecondary data analysis was conducted of the 1999 and 2000 editions of the Medical Expenditure Panel Survey (MEPS), a nationally representative survey conducted in 5 rounds by household interview. Two years of MEPS data were combined in this analysis to improve the precision of estimates. Disability was defined by the presence of a limitation in age-appropriate social role activities, such as school or play, or receipt of specialized services through the early intervention or special education programs. The survey sample included 13,792 children younger than 18 years. The overall response rate was 65.5%.ResultsOur findings demonstrate that the 7.3% of US children with disabilities used many more services than their counterparts without disabilities in 1999-2000. The largest differences in utilization were for hospital days (464 vs 55 days per 1000), nonphysician professional visits (3.0 vs 0.6), and home health provider days (3.8 vs 0.04). As a result of their greater use, children with disabilities also had much higher health care expenditures (2669 dollars vs 676 dollars) and higher out-of-pocket expenditures (297 dollars vs 189 dollars). We also found that the distributions of total and out-of-pocket expenses were highly skewed, with a small fraction of the disabled population accounting for a large proportion of expenditures: the upper decile accounted for 65% of total health care expenses and 85% of all out-of-pocket expenses for the population with disabilities. Health insurance was found to convey significant protection against financially burdensome expenses. However, even after controlling for insurance status, low-income families experienced greater financial burdens than higher income families.ConclusionsThe skewed distribution of out-of-pocket expenses found in this and earlier studies indicates that the financial burden of childhood disability continues to be shared unevenly by families. Low-income families are especially vulnerable to burdensome out-of-pocket expenses. Additional efforts are needed to protect these high-risk families.

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