Partnering with patients with intellectual and developmental disabilities in medical decision-making 

Think about the last big decision you made. Maybe it was a significant purchase, a career change, or a choice about medical treatment. Did you make the decision totally on your own, or did you get the opinion of a partner, family member, or trusted friend? You may have even consulted several people as you made your decision. Seeking support when you’re making a decision is second nature for many of us, and it doesn’t have anything to do with our “capacity” to make that decision.  

But for individuals with intellectual and developmental disabilities (IDD), we often think of decision-making ability as a binary—either someone can make a decision independently, or they need a substitute decision-maker, like a guardian, conservator, or surrogate. In reality, for many people with IDD, medical decision-making is a spectrum. Inter-dependent decision-making with help from trusted supporters can help many people with IDD make their own decisions and avoid guardianship/conservatorship, which effectively strips them of ALL their legal rights. 

Supported decision-making is an emerging legal option that allows individuals with disabilities to retain their right to make choices about their lives (including medical care) with support from a team of people they choose. This video from the Special Hope Foundation explains supported decision-making and its benefits in more detail. Currently, 19 states and Washington, D.C., have laws allowing supported decision-making. (Look up your state here.) If supported decision-making isn’t an option in your area, it may be possible to incorporate its principles into existing legal structures like a power of attorney. 

When working to determine the capacity of an individual with IDD to make decisions in their medical care, consider the following tips: 

Use a tool to help 

Several tools are available online to help providers assess decision-making capacity in patients with IDD. One excellent resource is this worksheet from the Vanderbilt Kennedy Center IDD Toolkit.  

Assume abilities 

It’s always best to enter an encounter assuming a patient will be able to be an active participant in their own healthcare. For example, an individual may be non-speaking, but this doesn’t mean they have no means to communicate a decision or can’t understand information they hear. When communicating with a patient and assessing their decision-making capacity, make sure to utilize any accommodations they routinely use, like an assistive communication device, interpreter, or trusted supporter. 

Seek collateral 

Do you have access to a psycho-educational assessment or neuropsychiatric testing for your patient? This could be part of school records or the medical record. These tests are not perfect, but they can help give a rough idea of an individual’s ability to learn and process information. Also, of course ask patients and their care partners how they receive and understand information best. 

Understanding the basics of decision-making options can help guide patients and their care partners towards the least restrictive options for medical decision-making that allow them to remain central in making choices about their own life and health. 

This piece expresses the views solely of the author. It does not represent the views of any organization, including Johns Hopkins Medicine.