Exploring the Service Needs of Families and Children with ASD: Understanding Service Type, Insurance Status, and Outcome Indicators.

Background: Families of children with ASD utilize a greater number of services than families of children with other special healthcare needs. However, they also report more unmet needs. This is especially true for family services, such as parent-training and respite care. Differences in service access are further influenced by family socioeconomic status (SES) and insurance status. Some research suggests that families in the Medicaid system receive more services than those covered by private insurance, while others argue that this may be due to inefficient service delivery. Reported services are also affected by different service indicators, such as cost, satisfaction, or number of visits. This combination of differences makes it difficult to understand the service needs of this population.

Objectives: We aim to better understand service needs of families of children with ASD through exploratory analysis focusing on: 1) service types, 2) insurance status, and 3) service outcome indicators.

Methods: Parents of children with ASD (n=249; mean=9.7 years old) completed a demographic questionnaire and a modified version of the Services Inventory. Modifications were made based on common service needs of families and children with ASD, as well as recommendations from parents and professionals. Special attention was given to ensure that the content would be clear to low-income families receiving services within the Medicaid system. Parents were asked to indicate whether they receive, need, or do not need each of 28 common intervention, ancillary, and family support services. Service adequacy was measured as the ratio of total services received to the total number of services needed and received. Parents also indicated satisfaction with each service they receive and how they pay for their child’s services (i.e., private insurance, Medicaid, or out-of-pocket).

Results:  The relationship between all service use variables was high, indicating that parents’ perceptions of service adequacy were consistent with more objective measures. Families reported receiving 8 different services on average. This represented 44% of needed common intervention services, 55% of needed ancillary services, and 37% of needed family support services, indicating unequal distribution of needs. There were also differences based on SES. Higher SES families reported greater service adequacy than lower SES families (p<.001, d=.51). Furthermore, families with private insurance actually reported higher service adequacy (p=.002, d=.43) compared to families of children with Medicaid. Across service types, privately insured families received more common interventions (p<.001, d=.58) and ancillary services (p=.042, d=.30) than Medicaid families, but there were no differences in family support services (p=.282, d=.16).

Conclusions: Despite recent changes in insurance legislation, families of children with ASD continue to face high levels of unmet needs, which are intensified by lower SES. In contrast to previous research, we found that privately insured families reported better service outcomes; however, many families reported mixed insurance status. Family-support services emerged as a primary area of unmet needs that was equal among privately insured and Medicaid families. Results suggest that overall improvements need to be made in family support services, as well as efforts to improve service access among lower SES families.