Interviewed by Yu-shan Huang (BU Wheelock ’21)
Zach Rossetti is an associate professor of special education in the Teaching & Learning Department. His research examines the social belonging and participation of people with intellectual and developmental disabilities (IDD), with a specific focus on how educators and parents can facilitate friendship opportunities between students with and without IDD. He also conducts research about and with families of individuals with IDD, specifically examining parent-professional collaboration, culturally and linguistically diverse families’ language access and participation in the special education system, and sibling roles and relationships.
Previously, Rossetti and Dr. Meghan Burke (University of Illinois at Urbana-Champaign) developed and examined the efficacy of a civic engagement program with 127 parents of children with disabilities with funding from a Spencer Small Grant. Now with the new grant from the Spencer Foundation, Rossetti is hoping to bolster parent/caregiver and student participation in the Individuals with Disabilities Education Act (IDEA) reauthorization – the IDEA mandates individualized special education and related services for all eligible students with disabilities – through increasing the scale of the parent training, examining the effectiveness of the training, and developing a similar training for transition-aged students with disabilities aged 14–22. With a focus on legislative advocacy and community building, the civic engagement program provides a review of parent and family rights under IDEA, helps connect parents of children with and without disabilities, promotes the utilization of media for sharing stories and experiences about special education, connects families with their legislators, and teaches ways of giving formal testimony about potential changes in IDEA.
What are some challenges and facilitators to building relationships and communications between legislators and families?
I want to start by saying that it’s often difficult for families to even engage in individual advocacy [for appropriate services for one’s own child]. One of my recent papers speaks to the overall phenomenon of expecting too much from parents of children with disabilities. IDEA mandates parents to be invited as equal members of the education teams for their children, meaning that they participate as equal decision makers. The advocacy piece that the parents are asked to do is often above and beyond attending meetings and sharing their input. Parents often need to educate themselves about special education policy and practice, “fight” for appropriate services for their children, and monitor schools to ensure that those services are delivered. It’s an important and challenging consideration to protect parents’ rights to be members of their children’s educational teams while having schools alleviate some of those advocacy tasks. It’s difficult enough for families to achieve individual advocacy, getting an Individualized Education Plan (IEP) that’s appropriate for a child,–let alone overcoming other barriers to civic engagement and legislative advocacy. So it’s really important for schools and resource centers to support families.
One of the things that has been reported to help facilitate legislative advocacy is the element of group engagement, such as visiting the state house and meeting with legislators in a group. Other factors such as having personal connections directly and indirectly to legislators and experience advocating for a cause have also been identified as contributing factors that help promote civic engagement.
Can you speak about the consideration of linguistic, cultural, and socioeconomic backgrounds around advocacy?
There is an element of privilege, specifically in which research indicates that those who are satisfied with their children’s IEPs are usually white, upper middle class people. There remains the need to include more diverse voices and experiences in special education advocacy and research and to address racism and other structural barriers to help families advocate for their children.
In a separate project, working with Latinx parents of children with disabilities of which the majority reported to be below the poverty line and having emergent English language proficiency, I’ve observed some cultural disconnect in terms of what’s perceived as advocacy and involvement. These families were incredibly active in their children’s lives and of course wanted the best services and education for them. But the families were not active in terms of in-school time and advocacy that predominantly white teachers would expect or are most comfortable with. As I’m writing up the paper, I wish to contribute to the conversation about this disconnect and even lack of trust that stems from the discrepancy between the educators’ expectations and the families’ ways of advocacy.
Where is your research headed?
Our current project is scaling the civic engagement training up in six new states and, based on the results and the input from parents and from the Parent Training & Information Centers (PTIs) collaborating on the project, we wish to revise the training and share it with PTIs across the country. One other exciting part of the project is that we are adapting the parent civic engagement program for transition-aged youth (14-22 years-old) to promote their advocacy in their own IEP meetings and in the community. We’ve been developing the focus group protocols for our youth participants, and one interesting question that we’re trying to answer is how their parents’ and their involvement in decision making and advocacy may overlap or conflict. In other words, we are hoping to tease out where the youths are with their advocacy in relation to their parents’ advocacy, and we’re really excited to learn about what that looks like.