“I Want What Every Parent Wants”: Leveraging the Knowledge of Families and Youth to Disrupt and Dismantle Segregated Special Education Practices in Local Contexts

• In Event: Critically Complicating (Special) Education Policy, Process, and Praxis Through Family, Youth, Educator, and Scholar Perspectives

Abstract

Objectives
For two years, I have collaborated in community meetings with families across the county where I live. Our meetings have been focused on sharing experiences across local districts, where students labeled with intellectual disability (ID), multiple disabilities, autism, and/or have complex support needs are relegated to highly segregated, county systems of education. The intention is to leverage the deep expertise and knowledge that exists within families not only about what they want for their child, but even more importantly, about ways to promote change for all students in their local contexts, and create resources for families to promote/demand structural change at the local level.

Theoretical Framework
Despite federal legislation intended to promote and support access to general education and mainstream school environments for all students with disabilities (IDEA, 2004; ESSA, 2015), including those most at risk for educational segregation, and despite decades of research about “what works,” related to inclusive education, associated practices, and models of structural reform (c.f. Hehir, et al, 2016), most students who fall into low-incidence disability categories and/or have (perceived) complex support needs, continue to experience highly segregated school lives, and are subjected to low-expectations and presumed incompetence (Biklen & Burke, 2006). This project aims to leverage family knowledge and center the voices, experiences, and perspectives of students/youth labeled with disability who experience educational segregation, in the co-research process.

Methods
This project uses a co-design approach (Ishimaru et al, 2018) with families of and student/youth with disabilities. Co-design is a process of partnering and decision- making that engages diverse peoples to collectively identify problems of practice and innovate solutions. In this proposed, co-design process, diverse stakeholders (e.g. families and students/youth) will come together in order to collectively identify issues or problems and to design solutions. Co-design has the potential to foster change-making that is responsive, adaptive, and equity- oriented (Ishimaru, et al 2018).

Scientific Significance
Co-designing allows me to enact new forms of collaboration with nondominant families and students/youth resulting in both change-making, and in the process of research and praxis, including new partnerships with two more groups of families: one in the Central Valley of California and a group of South Asian families in Silicon Valley, who I have current/past advocacy relationships with. The iterative form of community-based design circles is a methodological advancement that can reclaim the necessary and agentic role of families of and students/youth with disabilities in transforming educational research, policy, and practice. As such, it demonstrates the potential of this research process to disrupt ableist, racist, classist norms and ends of traditional research related to education and disability, in the reimagining of how families and students/youth with disabilities can promote the creation of equitable and inclusive schools and educational systems. This collaborative, co-research process is aimed at collective and locally-informed actions within and across school districts to disrupt policies, practices, and structures that work to maintain highly segregated systems of education for students who are labeled with intellectual disability, multiple disabilities, and/or autism, including those with complex support needs.

Author

• Emily A. Nusbaum, University of California - Berkeley