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(SDAS) Tough Choices: Autism, Private Health Insurance and Family Out-of-pocket


The Affordable Care Act (P.L. 111-148) presents new health insurance choices for parents raising children with autism. Despite the promise of extended insurance coverage for these families, research evidence about the impacts of insurance coverage remains mixed (Bilaver & Jordan, 2013; Parish, Thomas, 2012). However, we know that families with autism continue to be more likely to report inadequate insurance and difficulties with access to care compared to other children with special health care needs (Vohr, 2013; Thomas, 2012). Emerging patterns in our current work suggest that insurance choices of families are influenced by out-of-pocket expenditures without regard to the breadth and depth of services covered, but this observation has yet to be substantiated with rigorous testing. This is troubling from a policy perspective since low deductible and co-payment plans are expensive, reduce resources and thereby constrain use of uncovered services, and may even require families to trade off coverage of mental health and habilitative services as well. Yet, efforts to address these issues are constrained by the current lack of adequate and timely research. What we need to know is how insurance plan features and child service use are associated with family ratings of insurance adequacy, plan choices, and the impact on family out-of-pocket spending. The goal of this study is to develop firmer evidence about the relationships between private health insurance plan features and family needs. We can advance this agenda in a one-year HRSA grant by examining secondary data already available through the Medical Expenditure Panel Survey (MEPS) as a stepping-stone to future intervention studies focused on improving family insurance choices. For the proposed one-year study, two hypotheses will be examined following from our prior work: that families will value low deductibles, but that low deductibles expose families to unanticipated expenditures. Three aims will guide the proposed study: Aim 1: To determine the private health insurance plan features and child service use experiences associated with family ratings of insurance plan adequacy Aim 2: To develop objective measures of plan quality for selected health insurance plans offered through state health insurance exchanges by generating family expenditures for premiums, copayments, and uncovered services Aim 3: To develop subjective measures of plan quality for selected health insurance plans by simulating family ratings based on the model from Aim 1 and the expenditures from Aim 2 to highlight family choice strategies needing improvement. 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 pay for the services they need (USDHHS, 2014; HRSA, 2012). Findings will also inform family choice strategies as well as the design of insurance plans that meet the needs of families raising children with autism.


Listed is descending order by year published.

Kathleen C. Thomas, Christianna S. Williams, Neal deJong, Joseph P. Morrissey; Examination of Parent Insurance Ratings, Child Expenditures, and Financial Burden Among Children With Autism: A Mismatch Suggests New Hypotheses to Test. Pediatrics February 2016; 137 (Supplement_2): S186–S195. 10.1542/peds.2015-2851Q

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