Thinking Ahead Matters: CCCC Releases White Paper on Conservatorship and Supported Decision-making for People with Intellectual and Developmental Disabilities

Originally posted on January26, 2015

In a new white paper, “Thinking Ahead Matters: Supporting and improving healthcare decision-making and end-of-life planning for people with intellectual and developmental disabilities,” the Coalition for Compassionate Care of California (CCCC), in partnership with Mildred Consulting, has undertaken an effort to understand more about the conservatorship of people with developmental disabilities, with the aim of fostering greater self-determination and empowerment of this population throughout life as well as at the end of life.
“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 control, choice or dignity in the experience of dying than others do,” said Judy Thomas, JD, executive director of the Coalition for Compassionate Care of California.

Questions considered in the white paper include:
  • 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?
CCC has been told of instances where people with developmental disabilities were not supported to understand and exercise the choices they have when it comes to making healthcare decisions.

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; had been placed on a track of comfort care against their wishes; have died in a hospital despite a preference to be at home; and instances where the disabled person’s wishes were disregarded about where to be buried and who should receive their belongings after their death.

Related story: Remembering Donald Roberts

Learn more about the Coalition for Compassionate Care of California’s work with people with developmental disabilities.

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.