Recommendations of the Consent and Decision-Making Strand From the National Goals 2024 Conference

This article presents the recommendations developed by the Consent and Decision-Making Strand at the National Goals conference, a platform for leaders in the intellectual and developmental disabilities (IDD) field to advance research, advocacy, policy, and practice. Over the past decade, self-advocacy efforts, strengths-based approaches, and evolving societal perspectives have contributed to some progress in autonomy and decision-making rights for people with IDD. However, persistent ableist norms coupled with oppressive and systemic barriers continue to limit the human and civil rights to consent and decision-making for people with IDD. Recommendations to advance change include: (1) building a culture of consent, (2) creating clear policies for Supported Decision-Making (SDM), (3) advancing inclusive research practices that empower people with IDD to participate and lead in all aspects of research they choose, (4) innovating with technology to enhance autonomy while ensuring privacy and security, and (5) leveraging data to change education, training, and systems. These recommendations provide a framework for transformative change needed to ensure equitable, inclusive, and accessible consent and decision-making opportunities for people with IDD.