Resource Link

https://www.aaidd.org/docs/default-source/national-goals/05-consdecmaking-formatted.pdf?sfvrsn=340b0721_2

Resource Description

Introduction This document is an issue brief about consent and decision-making for people with intellectual and developmental disabilities (IDD). It was written by researchers and advocates in May 2025. The brief explains how society's views have changed about people with IDD making their own choices. It also describes a helpful approach called supported decision-making that lets people with IDD make decisions with help from others they trust.

Resource Summary

Content Summary In the past, other people made all the decisions for people with IDD. Family members or doctors would choose what was best for them. People thought this was the right way to protect people with disabilities. Now we know this was wrong. People with IDD have the same rights as everyone else to make choices about their own lives. The document explains that people with IDD can learn to make good decisions when they get the right support. They should be able to try new things, make mistakes, and learn from those mistakes. This helps them grow and become more independent. Everyone needs practice to get better at making decisions, including people with disabilities. Supported decision-making is a new way to help people with IDD. Instead of having someone else make all their choices, people with IDD pick trusted friends or family to help them think through big decisions. This is very different from guardianship, where one person has legal power to make all decisions for someone else. Research shows that people under guardianship often have fewer friends and are less likely to have jobs. The document shares two stories about a man named John to show how this works. In one story, John wants to donate a kidney to his brother. This is a very serious surgery with big risks. Even with help, John cannot fully understand what could happen to his own health. So the court decides he cannot make this choice. In the second story, John hurts his hand and needs minor surgery. His doctor explains the surgery in simple words and uses pictures. His father helps him think about the good and bad parts. John understands enough to decide he wants the surgery. The brief says that people with IDD should start practicing making choices when they are young. Researchers should work with people with IDD as partners, not just study them. Communities need to include everyone and make sure all people can participate. Laws should protect the rights of people with IDD to make their own decisions. The document calls for big changes in how we think about disability. Families and workers need better training about consent and decision-making. They need to listen to what people with IDD want and respect their choices. The goal is to build a world where people with IDD can grow their decision-making skills throughout their whole lives. This will help them live the lives they choose and be full members of their communities.