Supported Decision-Making for Adults with Intellectual or Developmental Disabilities

Everyone has the right to voice their opinions about what is best for them. However, sometimes it is difficult for individuals with disabilities to fully make that decision alone. That is where “supported decision-making” comes into play.

Supported decision-making is when an individual with disabilities selects people they trust, such as friends, family, and professionals, to help them retain their decision-making ability. The selected individuals help the person with disabilities understand and communicate decisions, including their medical decisions. It is critical to recognize that every individual has their own decision-making rights, and supported decision-making just helps individuals with disabilities make their decisions more informed.

Here are steps you should take when a patient has a decision-making supporter with him/her:

  • Gather information about the person accompanying the patient
    • The relationship to patient
    • The role they will play
  • Prepare to adapt to the patient’s needs
    • Provide sufficient time for discussion
    • Adjust sensory inputs that make the patient feel uneasy
    • Ensure appropriate communication supports are in place
  • Examine the patient’s capacity and the need for a decision-making supporter
    • Is the patient able to understand their health issue?
    • Does the patient understand what the treatment involves?
    • Does the patient understand all possible consequences of the treatment?
    • Can the patient decide between all the treatment options?
    • Does the patient understand all the consequences possible if they refuse treatment?

It is important to consider the legislation on supported decision-making in your state. Here is a link that can connect you to your state’s legislation: http://supporteddecisionmaking.org/states

It is important to recognize the potential risks involved with supported decision-making:

  • The supporter may take advantage of their role and take advantage of the patient by encouraging bad choices.
  • You may not be familiar with the legislation regarding supported-decision making in your state.
  • You may not feel comfortable working with patients with intellectual or developmental disabilities. It is important to connect with others who can help you in this process and recognize helpful supports, such as communication supports.

Why is supported decision-making important in the medical field?

  • The patient is able to work with the people they trust most to help them understand the medical situation they are currently facing.
  • The patient is able to be more confident in the decisions they are making.
  • The patient is still the primary decision-maker!

Developed by the Vanderbilt Kennedy Center and reviewed by Disability Rights Tennessee.