In our work, the Coalition for Compassionate Care of California (CCCC) has encountered circumstances where a person with a developmental disability was not supported to understand and exercise the choices they have, the results of healthcare decisions, the process, and the consequences.
These circumstances include troubling reports of disabled people who:
- Were cut off from friends and people they are close to at the end of their lives
- Had no choices in receiving painful and invasive procedures that undermined the quality of the end of their lives
- Died in a hospital despite a preference to be at home
- Had expressed wishes about where to be buried and who should receive their belongings after their death, but were disregarded.
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 advance care planning (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.
Learn more about tools and resources CCCC has developed to address the needs of the intellectually and developmentally disabled community when preparing for the end of life.
Supported Healthcare Decision Making
Sometimes everyone needs help managing their health needs, communicating with their physicians, and understanding health information. Using Supported Healthcare Decision Making, adults with disabilities can name trusted supporters to help them access health care, understand medical information, and make medical decisions. Partners in Health: Implementing Supported Healthcare Decision-Making for Users of Augmentative and Alternative Communication is a guide written by Clarissa Kripke, MD, FAAFP, Melissa Crisp-Cooper, and Brianna Doherty, PhD, with funding from Ability Central Philanthropy and the WITH Foundation, and input from many key thought leaders including CCCC's founding CEO Judy Thomas, to help implement supported health care decisionmaking for users of augmentative and alternative communication.
Empowering Self-Determination Through Advance Care Planning
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. CCCC received funding in 2021 from the WITH Foundation to establish an advisory group comprising representatives from regional centers, self-advocates, and community and family members to help pilot and refine these important materials. The updated products are now available to regional centers and other related providers throughout California to help make advance care planning a regular part of the Individual Program Plan (IPP) process conducted with regional center staff and clients. Learn more.