Name: Involving Self-Advocates in Policy Research
Start: 2019-12-06T15:20:00-0700
End: 2019-12-06T16:10:00-0700

Each year, the TASH Conference brings together our constituents to share resources and success stories, learn about field-driven best practices, and network within a community engaged in shared values. The Conference is attended by passionate leaders, experts, and advocates from every corner of the disability community. Conference attendees are influential in their fields and communities, and play an important role in the provision of services and supports for the millions of individuals and organizations around the world; and include professors and researchers from leading institutions; those involved in local, state, and federal governments and public policy; special and general educators, and school administrators; self-advocates, adult service providers; students, family members, and many others. This year’s conference theme, Building Diverse and Inclusive Communities, reminds us that equity, opportunity, and inclusion relies on the input of broad perspectives and experiences.

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Involving Self-Advocates in Policy Research Seating Available

Limited Capacity seats available

The benefits of including stakeholders in data-informed policy decisions include opportunities for meaningful social contribution and reduction of persistent disparities in accessing community services for individuals with disabilities. Such benefits require us to embrace stakeholder engagement as a crucial aspect of our work improving Medicaid systems, which greatly impact the lives of individuals with disabilities and their families. However, stakeholder engagement is often challenging due to resources, accessibility of complex topics, outreach to marginalized communities, and legislative timelines. In this presentation, we discuss three approaches that we use in our projects that successfully integrate stakeholder engagement. For each approach, we will provide examples of how we engage stakeholders in the process. Then, we will discuss with self-advocates and other attendees the ways they want to be involved in decisions that impact their services the most. The first approach we use involves engaging advisory committees made up of stakeholders with various roles and perspectives throughout the project. The next approach is collecting stakeholder perspectives via focus groups and/or surveys. The third approach involves stakeholder participation in the formation of project tasks and collecting data. This approach, informed by participatory action research principles, allows stakeholders to contribute their unique expertise and take ownership of the decision-making involved in data-informed policy research. We will facilitate discussion on how to best seek out collaborators and advocates, how individuals think typical methods of self-advocate engagement may be improved, and brainstorm new methods for ensuring individuals with disabilities are heard throughout the process of conducting research to inform policy. In addition to the facilitated conversation, we present examples of each type of approach in past work and note the strengths and barriers we encountered through our experiences. Finally, we offer solutions and tips based on our experiences.

Presenters