People with IDD should be given the opportunity to talk about the end of their life and what choices they would make. As with the general population, it is important to initiate the advance care planning process for all people with IDD who are 18 years of age or older.
The first step is to determine the capacity or ability of the adult with IDD and then to choose who they trust to make healthcare decisions on their behalf. Capacity to make a health care decision is the ability to adequately understand and appreciate the nature and consequences of proposed professional medical treatment. If the person has the capacity to choose a health care agent, encourage the individual to complete the designation of a health care representative form with the appropriate witnesses.
If the person with IDD does not have the capacity to choose a health care agent, consider initiating guardianship, with the authority to make medical decisions, including decisions regarding life-sustaining treatment. A licensed physician or clinical psychologist can make the determination that an individual lacks the capacity to make a health care decision.
Family members and staff serving those with IDD should also engage in advance care planning.