The following resources were developed to address the needs of the intellectual and developmentally disabled community when preparing for the end of life.
The Coalition for Compassionate Care of California (CCCC), in partnership with Mildred Consulting, has undertaken the effort to try to understand more about conservatorship of people with developmental disabilities with an aim of fostering greater self-determination and empowerment of this population throughout life as well as at the end of life.
Questions considered in this report:
- What is the process of conservatorship for people with developmental disabilities in California?
- How large is the impact of conservatorship on healthcare decision-making for this population?
- What strategies would improve self-determination in healthcare decisions for people with developmental disabilities?
While end-of-life decision-making is a complicated area overall and issues around protection of vulnerable people exist for important reasons, there is no justification for people with disabilities to have less agency, choice or dignity in the experience of dying than others do.
Thinking Ahead Matters was made possible with support from The Special Hope Foundation, which advocates for accessible healthcare delivery designed to meet the needs of adults with developmental disabilities.
Many of the conversations that surround end-of-life care include concepts and language that are challenging to follow, especially for people with developmental 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.
Thinking Ahead: My Life at the End (PDF) 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 video 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.
To order a free hardcopy of the Thinking Ahead workbook, contact us today.