The Center for Community and Public Health at the Kinder Institute for Urban Research at Rice University recently received a five-year grant from the Texas Council for Developmental Disabilities to adapt an existing bereavement program, Paths (Senderos), to meet the mental health needs of adults with intellectual and development disabilities in the face of loss.
The outcome of the project will be an evidence-based, accessible and easy to disseminate toolkit, including informational videos on loss and grief for the IDD community.
The focus of the program includes knowledge to understand, process, cope with and adjust to loss, as well as overcome misconceptions about how people with IDD experience grief. The videos, which will be disseminated in collaboration with the Kinder Institute’s external affairs team, will feature adults with IDD who will share their grief experiences. All resources will be made available in English and Spanish, with additional languages being offered later.
Luz Garcini, director of Community and Public Health at the Kinder Institute for Urban Research, and project coordinator Kathryn Gonzalez, are leading the program, which is collaborating with 12 community organizations across the Houston area with expertise in health care services, residential and daytime facilities, and advocacy groups supporting the IDD community. With guidance from the community partners, the team conducted formative research to learn about barriers in grief support for adults with IDD and specific coping strategies that could help adults with IDD amid loss.
Preliminary findings showed that spirituality, spending time with others, being included in grief rituals and telling their story are essential to help adults with IDD cope with grief. Importantly, creative outlets are a valuable form of expression for many people with IDD.
Various art forms, such as photography, drawing and writing, are commonly used among the IDD community to remember their loved ones and show how they feel.
Information collected from adults with IDD and Kinder community partners has been vital to creating impactful resources. The lived experiences of people with IDD directly inform the development of the video series and booklets, ensuring the content is meaningful, respectful and grounded in real needs.
By incorporating the voices and perspectives of those most affected, and forming strong partnerships with local organizations, this project addresses an unmet need and provides people with IDD access to the tools they need to navigate the challenges of loss in a way that is both empowering and supportive.
Kathryn Gonzalez
Project Coordinator
Center for Community and Public Health
Kinder Institute for Urban Research
Luz Garcini
Assistant Professor of Psychological Sciences
Director of Community and Public Health
Kinder Institute for Urban Research