Exploring Informed Consent for Individuals with Intellectual and Developmental Disabilities

In 2006 there were roughly 4.7 million individuals living with intellectual/developmental disabilities in the U.S.; approximately 7,000 live in Utah. Their disabilities range from very mild to severe. Many require assistance that spans from personal to physical care, as well as help making decisions that ordinary individuals take for granted. Consequently, they require the services of fiscal intermediaries and legal guardians who have fiduciary powers to act on their behalf in social, legal and health matters. On a typical day decisions are made for them ranging from clothing and food choices to housing accommodations.

While this relationship serves to protect individuals with intellectual/developmental disabilities, these layers of legal protections may unintentionally prohibit these individuals from making autonomous decisions within the realm of their current ability. Furthermore, these types of relationships may not take into account evolution in the individual's ability to develop capacity and to make decisions. Provision of informed consent to participate in community programs and services, as well as research, provide a key example.

There is a paucity of research exploring conflict in these relationships and issues arising when individuals with disabilities function at different capacity levels and the impact on their ability to consent. Research and practice needs to take into account the level and nature of the individual's disabilities and also appropriate and effective ways to communicate risks and benefits of their actions. When these individuals are allowed to make choices compatible with their ability-level, they eventually learn to make informed decisions.