Reimagining Education, Learning, and Partnership: Experiences of Caregivers of Students With Extensive Support Needs During Distance Learning

Background and Purpose: The unprecedented shift to distance learning during the COVID-19 pandemic intensified educational inequities for students with disabilities, a historically marginalized population in terms of access to quality instruction. Caregivers assumed an integral role in access to education during distance learning, making it critical for school teams to understand caregiver experiences and priorities. The purpose of this study was to explore the experiences, needs, and desires of caregivers of students with extensive support needs (ESN; i.e., intellectual disability, autism, or multiple disabilities) related to distance learning in order to support educators in program design during the COVID-19 pandemic and beyond through the following research question: In what ways has mandated distance learning during the COVID-19 pandemic maintained and/or transformed education for students with ESN and their families? Methods: We combine qualitative (interview) and quantitative (survey) data analyses to jointly explore caregiver experiences. A total of 92 caregivers completed the survey, and 11 were interviewed. Survey results provided frequencies of factors that have impacted families during the COVID-19 pandemic: for example, access to educational technology, types of educational supports received, and frequencies of social, emotional, and physical family experiences (e.g., increased anxiety, increased physical strain), as well as differences in experiences across subgroups of caregivers (e.g., single- and multiple-caregiver homes, different ethnicities), challenges, and silver linings. Interviews allowed us to contextualize and more deeply explore patterns that emerged from the survey data. Findings: Four themes were identified: (1) the intense physical, mental, and emotional impact of distance learning; (2) transformed access to instruction; (3) transformed access to social connections; and (4) transformed family–school interactions. Caregivers struggled to meet their own needs and those of their children during distance learning. Most reported that their children needed consistent support throughout the day to access their education and maintain health and safety. Despite struggling to meet their own needs, caregivers frequently maintained high expectations for academic learning and social connection, and they demonstrated agency in the development of educational programs. Caregivers appreciated increased collaboration with teachers, increased knowledge of their child’s skills, and ways to work on those skills at home. Conclusion: Access to instruction became synonymous with the complex relationship between the availability of in-person support, the meaningfulness of instruction, and accessibility of the educational program. Findings highlight the importance of increased and sustained collaboration between school teams and families to maximize student access and success within distance learning and in-person schooling.