The Problem
The Texas DD Council engaged Rice University to address a critical gap: people with intellectual and developmental disabilities (IDD) are often left out of conversations, support, and rituals related to grief and loss. This can lead to poorer health outcomes and limited coping skills.
Action:
The project is creating practical, easy-to-use grief supports shaped directly by people with IDD. This includes a video series featuring adults with IDD sharing real experiences and coping strategies, along with plain-language grief support booklets. Workshops and focus groups were held to test and improve materials, with strong input from self-advocates and community partners to ensure the tools are relevant, inclusive, and accessible.
Results:
A major outcome is a peer-reviewed manuscript, Breaking the Silence, which analyzed 28 studies on grief among adults with IDD. The review found clear gaps in research and practice, especially around inclusion in funerals, conversations about death, and end-of-life planning. It also identified what helps: strong social support, calming activities, and creative expression.
Impact:
This project is changing how grief support is designed—by including people with IDD, not excluding them. It is building practical tools, elevating lived experience, and informing future research and training. Over time, this work will help families, providers, and communities better support people with IDD through loss, improving both emotional well-being and overall health.