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(SDAS) Adequate Health Insurance for Children with Autism: Evidence and Implications for Defining Essential Benefits


  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)


States are struggling to define essential benefits for mental health and other health care services under the Affordable Care Act that meet the needs of children with autism. Our recent work indicates that families raising children with autism contribute significant amounts out-of-pocket to the cost of care and that this pay-as-you-go strategy is associated with disparities in use for vulnerable families. As a result, in comparison to other children with special health care needs, these families are more likely to report unmet need and financial difficulties. Typically, private health insurance has excluded coverage for autism services. While Medicaid confers more extensive benefits, a shortage of providers who accept Medicaid combined with limited family resources for navigating the system pose barriers to care for Medicaid-eligible children with autism. Nonetheless, there are some children with autism and other special healthcare needs who benefit from a combination of private insurance and Medicaid coverage. Private insurance serves as the primary payer and Medicaid as the secondary payer, providing wrap-around coverage. There is a major research gap about the extent to which combined coverage provides adequate insurance for children with autism, how it improves access to care, and its impact on the mix and level of mental and other health care services they use. The long-term goal of this research is to improve access to care and outcomes for children with autism. The objective of the proposed study is to inform state deliberations about new definitions of essential benefits for mental health and other health care services by i) identifying the segment of children with autism who have the most adequate health insurance and ii) examining their health service use. These objectives will be addressed by means of three aims: 1. To estimate whether having combined private and wraparound Medicaid compared to other sources of insurance leads to parental reports of greater insurance adequacy and greater access to care for children with autism, 2. To estimate whether the most adequate insurance package identified from Aim 1 leads to greater mental health and other health care expenditures for children with autism, and 3. To describe the breadth and depth of coverage for mental and other health services that would meet the needs of children with autism comparable to other children. Data from two nationally representative surveys will be used: the 2009-10 National Survey of Children with Special Health Care Needs will be used to examine insurance adequacy for children with autism, a pooled cross-sectional sample 2000-2011 from the Medical Expenditure Panel Survey will be used to examine health care expenditures. Multivariate methods will be used to model adequacy of health insurance and utilization of children with combined insurance compared to others. Findings will be used to develop guidance to states on how to define essential benefits for mental health and other health care services under the Affordable Care Act. Children with autism with combined private insurance and wrap-around Medicaid have the best insurance coverage to support barrier-free service use. Examination of their patterns of care can elucidate essential benefits for mental health and other health care services for these children. Findings address a core mission of HRSA's Maternal and Child Health Bureau, and Healthy People 2020 objectives, that families of children with special health care needs, including autism, have access to adequate health insurance to improve their access to care and reduce family financial burden.


Listed is descending order by year published.

deJong NA, Williams CS, Thomas KC. Parent-Reported Health Consequences and Relationship to Expenditures in Children with ADHD. Matern Child Health J. 2016 Jan 11. [Epub ahead of print]

Thomas KC, Williams CS, deJong N, Morrissey JP. Examination of parent Insurance ratings, child expenditures, and financial burden among children with autism: A mismatch suggests new hypotheses to test. Pediatrics. 2016 Feb; 137 Suppl 2:S186-95.

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