Introduction to Supported Decision-Making Toolkit

INTRODUCTION: INTENT OF THE SUPPORTED DECISION-MAKING TOOLKIT

People with disabilities and their families often ask, “What will happen to me when I am older or, to my son or daughter when I am gone?” As young people approach adulthood, families often question whether to pursue guardianship. In addition, older adults or their children worry about what will happen when the older adult is having difficulty managing their own affairs. These conversations are made more difficult by lack of information and tools people can use to support loved ones.

This toolkit is for all people, including people with multiple disabilities, intellectual disabilities, developmental disabilities, mental health disabilities, physical disabilities, substance use disorders, and aging adults. Supported Decision-Making is an approach that helps individuals of all ages make their own life decisions with support from family, friends, and trusted allies.

It starts with recognizing that people with disabilities, like people of all ages, have the right to make their own decisions. Supported Decision-Making allows people with disabilities and older adults, to receive the support they need and want, to understand the situations and choices they face, while keeping their rights. Supported Decision-Making mirrors how all adults make decisions. Practicing self-determination means making your own choices, learning to solve problems, and experiencing the consequences of making choices.

No single tool can answer all questions about supported decision-making or show all the available resources. No one resource meets the needs of every individual. The authors hope that this toolkit will serve as a base from which to build. Tools can be used to support people with all types of needs including significant needs and those using different ways of communicating. This Toolkit is meant to be a resource to those wanting to use supported decision-making in their life, the lives of loved ones or, in the lives of those they work with. It addresses the tools people can use throughout a person’s lifespan.

A NOTE ABOUT TERMS USED:

Organizations who work with people with disabilities use acronyms to shorten phrases or names they use often. In the acronym guide, you will find the names spelled out.

MYTHS ABOUT GUARDIANSHIP

Parents are often given confusing or misleading information about guardianship and/or the need to get guardianship over their children with IDD. Here are some of the most common:

1. If you do not get guardianship when your child turns 18, you will no longer be able to participate in her/his IEP meetings or other educational planning.

THIS IS FALSE; your child may authorize you to continue your involvement.

2. You need guardianship to get benefits for your child or to advocate for them or, negotiate with the organizations who provide support to them.

THIS IS FALSE: there is no such requirement.

3. Getting guardianship is the best way to protect your child with IDD.

THIS IS FALSE; guardianship is no “silver bullet”, while studies show that increasing self-determination helps people with IDD to better protect themselves.

4. There is no downside to getting guardianship; everyone does it.

THIS IS FALSE; many parents are not aware that guardianship totally removes some, or all their child’s legal and civil rights and leaves her or him a “non-person”. If people with IDD are not given opportunities to make their own decisions and have those decisions recognized, they will not grow and are far less likely to live self-determined and inclusive lives.

5. “Good” parents get guardianship because their children with IDD will always be “children” and they need to remain in a parental role.

THIS IS FALSE; over time, views of and expectations for people with IDD have changed greatly, and the goal is now for children with IDD to grow into self-determined adults who live rich and inclusive lives.

Credit: While this document speaks about people with disabilities, it applies to all people.