Examining the Impact of an Hcbs Autism Waiver on Families of Children with Autism in Maryland: A Mixed-Design Study

Background:  Families of children with autism are under stress that exceeds that of families of typical children and even those of children with less challenging disabilities. States have begun to recognize the need for family support and many have tapped Medicaid funding through HCBS Waiver services. However, little is known about the impacts of these services. Maryland, which administers the largest autism Waiver program in the country, offers a unique opportunity to study family impacts due to the presence of both a large number of Waiver families as well as a registry of families waiting to access the Waiver. In conjunction with the Maryland State Department of Education (MSDE) research has been conducted since 2008 comparing families of individuals receiving waiver services to a control group of families who expressed interest in receiving services, but who were not yet determined eligible for services. The authors assessed families on a variety of quantitative measures including demographic questions, Family Quality of Life (FQoL), satisfaction with services, reported child progress, reported need for services, and employment information (Eskow et al., 2011; Eskow et al., 2015). Results indicated higher FQoL for individuals on the waiver compared to those on the registry (Eskow et al., 2011), as well as greater perceived improvement in child with autism’s independent living skills (Eskow et al., 2015).

Objectives:

1. To examine the impact of Waiver services on family quality of life (FQOL), employment, and family perspectives of their children’s progress, in comparison to families on the registry;
2. To explore family perspectives of the components of Waivers that contribute to family outcomes.

Methods:  This was a mixed-design study. For the quantitative study, we used propensity matching to develop equivalent samples of 552 families, including 282 waiver recipients and 270 on the registry. We conducted a statewide mail survey of these families to measure their utilization of and satisfaction with services, their FQOL, impact of their child’s autism on parents’ employment, and perceptions of their child’s academic, independent living, social, and communication progress. For the qualitative study, we purposively sampled families giving permission to be re-contacted to identify a diverse sample of 48 respondents. We analyzed the transcripts using Atlas+.

Results: We found that families on the Waiver scored significantly higher in their FQOL and in independent living skills for their children. Qualitative results suggested that in-home services and flexible partnership with the Waiver service coordinator were critical factors contributing to these results. Employment was more nuanced, with Waiver services enabling families to access a wider range of choices for employment.

Conclusions:  Recent findings are consistent with prior research (2011, 2015) thus providing quantitative evidence of the relationship between support received through Waiver Services and satisfaction with family quality of life. Ongoing research through longitudinal study is needed to advance our understanding of appropriate services and service delivery methods as they impact progress and function when working with families and their children with ASD.