The proposed study will estimate family financial and time costs forfamilies of children with an autism spectrum disorder (ASD) and will compare these family costs to thoseexperienced by families of children with asthma (ATA) and families of children with no significant healthconditions (NSH). Families of children with ASD face financial costs, such as out-of-pocket expenses formedical 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 achild 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 theirchildren, even families of children with NSH. However, previous reports of family costs for children withconditions such as cancer suggest that costs are substantially greater when a child has a significant healthcondition. Understanding the additional economic burden for families of children with ASD and ATA will helpin the development of policies to support families, for example, new tax incentives for families caring forchildren 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 tohealth systems and most studies have ignored costs from the family perspective. For example, statesconsidering autism insurance mandates often consider only their potential effect on costs to insurers, withoutconsidering 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 recruit1500 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 OCHINsystem of federally qualified health centers. Specifically, 500 families of children with ASD, 500 families ofchildren with ATA, and 500 families of children with NSH will be followed for one year using the FamilyEconomic 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) relatedto child's health for families of children with ASD, ATA and NSH. In addition to these three aims, we willalso 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 ofASD on family costs. Findings will provide essential information for designing health-care, workplace, andsocial policies that recognize the full impact of autism.
Interagency Autism Coordinating Committee (IACC)
Autism Research Database (AFD)
