The Coalition for Compassionate Care of California (CCCC) is pleased to announce that it has been awarded a grant from the WITH Foundation to work with California regional center staff and adults with developmental disabilities to develop and refine training materials related to advance care planning (ACP). ACP is the process by which people think about their preferences for medical care should they become unable to speak for themselves. The training materials will be designed to empower adults with developmental disabilities to explore, express, and record their wishes for care, including medical treatments, during serious illness and at end of life.

 

CCCC has a long history of working with the developmental disabilities community and regional centers to help individuals with developmental disabilities engage in ACP. Beginning in 2006, CCCC and the Board Resource Center worked with California regional center staff and clients to create “Thinking Ahead: My Way, My Choice, My Life at the End,” a workbook and video series on ACP that included an easy-to-complete advance directive. The workbook contains words, symbols, and pictures that facilitate discussion with and decision making by persons with developmental disabilities regarding their values, goals, and treatment preferences at the end of life. The videos serve as an instruction manual, containing vignettes that illustrate in simple, graphic format the purpose and use of the materials. Members of the developmental disabilities community are featured in the videos and were included in the entire process of creating “Thinking Ahead.”

 

The WITH Foundation grant will allow CCCC to revise these training and educational materials to better serve the developmental disabilities community today. Since “Thinking Ahead” was first produced, approaches and understanding of how to best serve adults with developmental disabilities have changed, necessitating a fresh look at tools, trainings, and resources. As part of the project, CCCC will establish an advisory group comprised of representatives from regional centers, self-advocates, and community and family members to help pilot and refine materials. The final products will be published and disseminated to regional centers and other related providers throughout California in order to be a regular part of the yearly Individual Program Plan (IPP) process conducted with regional center staff and clients.

 

“Advance Care Planning is all about ensuring that the patient voice is central in healthcare, so that during serious illness or at the end of life everyone receives medical treatment that is aligned with their goals for how they want to live,” said CCCC CEO Judy Thomas, JD. “With this grant from the WITH Foundation, we are making sure that adults with developmental disabilities are not left out of this important planning process. We are grateful for this opportunity to serve this community and for the trust that the WITH Foundation has shown us with their support.”