Continuing Education: Helping Individuals with an Intellectual or Developmental Disability Cope with Serious Illness

There is a hidden population of people who require inclusive, affirmative care throughout the United States. Historically, they have been underserved, ignored, and forgotten. They live at home, in group settings, in nursing homes, and on the street. In 2020, there were 36.5 million people living at home in the U.S. with intellectual disability (ID) and developmental delay (DD). Their providers require a specialized lens to offer holistic individualized, biopsychosocial-spiritual care. The special protections established to prevent medical disenfranchisement, neglect, and abuse can seem esoteric. Clinicians may view those necessary protections as barriers to care.

This class offers guidance to provide inclusive, patient- and family-centered care for people and families living with ID/DD. Clinicians will understand the nuances of working with people and their families living with ID/DD throughout the life course, such as assessing capacity in the context of ID/DD. Special attention will be paid to the palliative management of serious illness and end-of-life care to navigate advance directives, goals of care discussions, and life-sustaining treatment in the context of complex capacity and competency conversations.

Using lecture, breakout groups, and discussion, we will examine case studies of persons with ID/DD who develop a life-limiting illness, when the person living with ID/DD is in a caregiver role, and best practices for additional support for people with ID/DD through bereavement.

Continuing Education Hours Offered: 2