Understanding Family Economic Impact of Chronic Child Health Conditions

Kaiser Foundation Research Institute, Oakland CA

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Abstract

PROJECT SUMMARY/ABSTRACT: The proposed study will estimate family financial and time costs for families of children with an autism spectrum disorder (ASD) and will compare these family costs to those experienced by families of children with asthma (ATA) and families of children with no significant health conditions (NSH). Families of children with ASD face financial costs, such as out-of-pocket expenses for medical and other services, as well as time costs from demands related to managing the child's ASD (e.g., coordinating health and school services). In addition, time demands and stress associated with parenting a child with ASD can lead to employment difficulties for parents, such as missed time from work due to ASD- related care giving responsibilities. All families experience financial and time costs related to caring for their children, even families of children with NSH. However, previous reports of family costs for children with conditions such as cancer suggest that costs are substantially greater when a child has a significant health condition. Understanding the additional economic burden for families of children with ASD and ATA will help in the development of policies to support families, for example, new tax incentives for families caring for children with ASD, or innovative interventions to aid parents in caregiving. Research to date on the cost of ASD in the United States has focused on direct health-care costs to health systems and most studies have ignored costs from the family perspective. For example, states considering autism insurance mandates often consider only their potential effect on costs to insurers, without considering how these mandates would affect other societal and family costs. We propose the largest and most rigorous study to date of family costs related to ASD. We will recruit 1500 families of children 3-17 years old from four geographically and ethnically diverse health systems: Kaiser Permanente (KP) Northwest, KP Southeast, KP Northern California, KP Hawaii, and the OCHIN system of federally qualified health centers. Specifically, 500 families of children with ASD, 500 families of children with ATA, and 500 families of children with NSH will be followed for one year using the Family Economic Impact Interview (FEII). We will estimate financial costs (e.g., out-of-pocket expenditures), time costs (e.g., time coordinating care), and employment costs (e.g., missed time from work) related to child's health for families of children with ASD, ATA and NSH. In addition to these three aims, we will also explore how family costs differ by age (early, middle, and late childhood), demographic characteristics, and whether costs are related to employer policies and state autism policies that may moderate the impact of ASD on family costs. Findings will provide essential information for designing health-care, workplace, and social policies that recognize the full impact of autism.