green banner that says 'thinking ahead'

In our work, the Coalition for Compassionate Care of California has encountered circumstances where a person with a developmental disability was not supported to understand and exercise the choices s/he has, 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,
  • Have died in a hospital despite a preference to be at home, and
  • Even instances where the disabled person’s wishes about where to be buried and who should receive their belongings after their death were disregarded.

Learn more about tools and resources CCCC has developed to address the needs of the intellectual and developmentally disabled community when preparing for the end of life.