Examination of Parent Insurance Ratings, Child Expenditures, and Financial Burden Among Children With Autism: A Mismatch Suggests New Hypotheses to Test.

OBJECTIVE: Families raising children with autism contribute significant amounts to the cost of care. In this era of health care reform, families have more insurance choices, but people are unfamiliar with health insurance terms. This study uses 2 national data sets to examine health insurance ratings from parents raising children with autism and child expenditures to explore how these measures align.

METHODS: Children with autism who met criteria for special health care needs and were continuously insured were examined. Data from the National Survey of Children With Special Health Care Needs 2009-2010 were used to examine parent report of adequate insurance (n = 3702). Pooled data from the Medical Expenditure Panel Survey 2002-2011 were used to examine expenditures (n = 346). Types of health insurance included private alone, Medicaid alone, and combined private and wrap-around Medicaid.

RESULTS: Having Medicaid doubled the odds of reporting adequate insurance compared with private insurance alone (P < .0001), and children on Medicaid had the lowest out-of-pocket costs ($150, P < .0001). Children covered by combined private and wrap-around Medicaid had the highest total expenditures ($11 596, P < .05) and the highest expenditures paid by their insurance ($10 638, P < .05).

CONCLUSIONS: These findings highlight a mismatch between parent ratings of insurance adequacy, child expenditures, and relative financial burden. Findings generate a number of questions to address within single sources of data. By elaborating the frameworks families use to judge the adequacy of their insurance, future research can develop policy strategies to improve both their satisfaction with their insurance coverage and the service use of children with autism.