Abstract

Aim: This article explores the issues of knowledge deficits of healthcare professionals in meeting the needs of people with IDD throughout the life span, and to identify factors that contribute to these deficits. Although statistics vary due to census results and the presence of a “hidden population,” approximately 1%–3% of the global population identify as living with an intellectual or developmental disability. People with intellectual or developmental disability experience health inequities and confront multiple barriers in society, often related to the stigma of intellectual or developmental disability. Disparities in care and service are attributed to a lack of knowledge and understanding among healthcare providers about people with intellectual or developmental disability, despite their increased risk for chronic health problems. The near absence of educational programs in nursing both nationally and internationally contributes to this significant knowledge deficit. In addition, ethical considerations between paternalistic beneficence and idealized autonomy have resulted in a lack of clear direction in working with a population that is often ignored or exploited. Nurses who view people with intellectual or developmental disability as vulnerable without assessing or acknowledging their capabilities may err toward paternalism in an effort to “first do no harm.” Likewise, nurses who fail to recognize the challenges and limitations faced by people with intellectual or developmental disability may not provide sufficient protections for a vulnerable person. People with intellectual or developmental disability are not binary, but rather complex individuals with a myriad of presentations. This article seeks to encourage a well-informed model of nursing care. Through an ethical lens, this article explores the nurse’s ethical commitments in cases of victimization, access to care, decision making, and the provision of optimal end-of-life care for people with intellectual or developmental disability.