The Role of the Household among Families with Children with Disabilities the Social Determinants of Health, Program Participation, Educational Attainment & Weathering the COVID-19 Pandemic

The COVID-19 pandemic magnified the disparities facing vulnerable populations, especially children with disabilities (CWD). In 2020-2021, most CWD lost access to in-person education and specialized services, such as occupational and speech therapy, delivered primarily via the education system. Families with CWD face numerous challenges: they are more likely to experience severe levels of anxiety (Willner et al., 2020), and they have three times the health expenditures (Newacheck and Kim, 2005), with the pandemic potentially exacerbating these challenges. My research focuses on exploring the impact of the COVID-19 pandemic on households with CWD in Florida. I explored (a) how the larger social and educational context in which households are exposed plays in their response to the pandemic, (b) how households with CWD in Miami, FL, responded to the pandemic, and (c) how the intersection of household members' characteristics impact household responses. In the qualitative phase, I recruited ten households of families with CWD in Miami, FL, prioritizing diversity in race/ethnicity, family composition, and primary language. Interviews inquired about a) aspects of their daily lives, such as social support, b) governmental benefits (e.g., SSI), c) the impact of COVID-19, particularly as it pertains to their health, well-being, employment, and education, and d) the decision-making process regarding their income and household expenditures. In the contextual phase, I conducted an environmental scan using the national education data sets, ranging from the National Center for Education Statistics (NCES) and Common Core Data (CCD), and at the state level, the Florida Department of Education Bureau of Exceptional Education (FLDOE-BEES) for four districts in Florida. Together, they provide a granular national, state (Florida), and district-level depiction emphasizing students with disabilities. Findings from my contextual phase show that at the household level, parental educational attainment and household income serve as an integral component in countering some of the negative implications of attending school in a low-funded school district. Among my selected districts, it is advantageous for SWD to attend a school in large districts, particularly those with voter-imposed tax referendums, as they may be able to invest a bit more in the child's needs. As it pertains to students of color with disabilities, the amount of diversity in school districts may serve as a protective factor and decrease the likelihood of being disciplined when compared to other students with disabilities. Findings from my case studies show that single-parent households with CWD are the most vulnerable, highlight the unintended consequences of receiving government assistance, and shed light on the dynamics and difficulties families with CWD undergo daily. Relatedly, although household income serves as an essential dictator when considering the ability to adapt, disability severity serves as the strongest indicator regarding adaptation and vulnerability, ultimately trumping household income and access to support. To conceptualize the unique household dynamic, I created the interdependency framework, which comprises of the dyad, the relationship between the parent and the child, and considers influences at the individual, internal, and external level. Supplemental to this, I created a weighted vulnerability rubric to illustrate vulnerability risk and capabilities to adapt. In conclusion, considering the household environment is imperative to improving the outcomes of a CWD, as all the decision-making and support mechanisms are done within the household. For sustainable change and to increase stability, more resources and support need to be provided, which in turn will also improve the parents' availability, potentially decreasing vulnerability at the household level and leading to a more resilient household. [The dissertation citations contained here are published with the permission of ProQuest LLC. Further reproduction is prohibited without permission. Copies of dissertations may be obtained by Telephone (800) 1-800-521-0600. Web page: http://www.proquest.com/en-US/products/dissertations/individuals.shtml.]