The following resources were developed to address the needs of the intellectually and developmentally disabled community when preparing for the end of life.
Advance Care Planning: Workbook and Videos
Many of the conversations that surround end-of-life care include concepts and language that are challenging to follow, especially for people with developmental or intellectual disabilities. Together with our partners, CCCC created a guide that enables people with developmental disabilities to advocate for themselves and stay in control of their lives through the very end.
The Thinking Ahead: My Life at the End (PDF) workbook contains words, symbols, and pictures that facilitate discussion with and decision making by persons with developmental and intellectual disabilities regarding their values, goals, and treatment preferences at the end of life. The video (below) serves as an instruction manual, containing vignettes that illustrate in simple, graphic format the purpose and use of the materials.
Thinking Ahead was made possible through a Wellness grant by the California Department of Developmental Services and reflects collaboration among Alta California, Golden Gate, and Eastern Los Angeles Regional Centers, Board Resource Center, and CCCC. Thinking Ahead was updated in 2022 as part of a grant project funded by the WITH Foundation with assistance from Alta California Regional Center and Valley Mountain Regional Center staff and clients.
To order a free hardcopy of the Thinking Ahead workbook, contact us today.
Thinking Ahead: My Life At The End Workbook
*The Spanish, Korean, and Chinese translations are based on the 2007 version.
Thinking Ahead Videos+
- Thinking Ahead: My Way, My Choice, My Life at the End (English)
- Thinking Ahead: My Way, My Choice, My Life at the End (Spanish)
- Thinking Ahead: Betty & Connie
- Remembering Donald Roberts
- Thinking Ahead: The Importance of End-of-Life Planning
+The videos are based on the 2007 version.
Let's Talk About Thinking Ahead
Skill-building training for professionals who serve individuals with intellectual and developmental disabilities
Advance care planning (ACP) is an important part of an Individual Program Plan (IPP), especially for those who are aging or have serious health conditions. ACP requires skillful conversations about difficult subjects. Yet, consistently high numbers of healthcare professionals report discomfort in having ACP conversations with their clients.
We Are Here to Help!
The Coalition for Compassionate Care of California (CCCC) has been a leader in helping professionals to develop the skills needed to have quality ACP conversations with their clients, including their clients with IDD. Many of the conversations that surround end-of-life care can be challenging to follow, especially for people with IDD. Together with our partners, CCCC created Thinking Ahead, a guide that enables people with IDD to advocate for themselves and stay in control of their lives through the very end.
"Let's Talk About Thinking Ahead" is our skills training for healthcare professionals leading ACP discussions with people living with IDD. Professionals who have attended this training have consistently rated it highly in helping them:
- Appreciate the benefits of ACP for the individual, as well as for friends and family
- Realize the risks of not having an advance care plan
- See how our own experiences and perspectives can help with, or get in the way of, supporting clients in planning
- Assist individuals with IDD plan for aging, illness, death, and loss
- Understand ACP and POLST – how and when they fit into an IPP
- Feel more comfortable and more skilled in guiding individuals with IDD through ACP
For more information on how to bring this training to your organization, please email [email protected] or call 916-489-2222.