When a young person with disabilities approaches the age of 18, the family is often mistakenly told that they must seek conservatorship (guardianship) or they will no longer be able to obtain information or provide guidance and support in the areas of healthcare, education and other services. In fact there are a variety of tools commonly used that allow families to continue to provide support to their loved ones. While some people with disabilities may need assistance with understanding information, researching and weighing options and making decisions, conservatorship is the most restrictive option available to support these issues. Because the restrictions of a conservatorship are rarely altered or reversed, it locks people into a long term and often permanent status of other people making binding decisions for them. Families are often unaware of potential complications of conservatorship or the alternatives available to support their loved ones. The following materials present an overview of concerns about the current conservatorship process:
Protecting Rights; Ensuring Choices
5 Reasons to Re-Think Guardianship
- Beyond Guardianship: Toward Alternatives That Promote Greater Self-Determination (PDF) » (2018 National Council on Disability report)
- Turning Rights Into Reality: How Guardianship and Alternatives Impact the Autonomy of People with Intellectual and Developmental Disabilities (PDF) » (2019 National Council on Disability report)
Supported decision making (SDM) allows people to obtain guidance and support without relinquishing their legal right to make decisions about their lives. Using supported decision-making, a person with a disability chooses a person or a team of trusted people to help understand, make, and communicate their decisions. The person may rely heavily on their supporters when making decisions, but the decisions ultimately remain within their control. Supported decision-making is a very flexible process; as the person gains experience, the areas in which they seek support and the people who they choose to support them may change. The following materials provide an overview of the supported decision-making process:
What Supported Decision-Making is
and why it Matters
Supported Decision-Making Workshop
Supported decision-making is not a difficult process and is often informally practiced by families and our service system. Formalizing supported decision-making is a relatively new process. The following resources are helpful to help get started with exploring a formal supported decision-making process.
Using Supported Decision-Making:
A Step by Step Guide
Supported Decision Making
- Supported Decision-Making Teams: Setting the Wheels in Motion » (Suzanne Francisco & Jonathon Martinis)
- Brainstorming Guide: How Are We Already Using Supported Decision-Making? (ACLU) »
- How to Make a Supported Decision-Making Agreement (ACLU) »
- Steps in Supported Decision-Making (American Bar Association). » This tool was written for attorneys but is a very practical guide for families and support teams.
- You Can Do It Without a Conservatorship! (ACLU) » Includes authorizations to share medical and educational records.
Supported decision-making may include the development of a written statement or formal contract that is written in plain language and is explained using the method the person receiving support understands most clearly. The agreement specifies the people who have been chosen as supporters, describes the role of the supporters and the areas that they have been asked to support with. Having a contract can be useful to clarify the roles of the supporters and is helpful if the role of the supporter(s) is ever challenged by school staff, medical provider or other professionals. There are a range of established tools, ranging from HIPAA releases, power of attorneys, IPPs, and many others, that are frequently used within the supported decision- making model.
- Principles: Conservatorship of Persons with Disabilities » (Disability Rights California)
- Limited Conservatorships & Alternatives »
- Supported health care decision-making for people with intellectual and cognitive disabilities » (Clarissa Kripke, Department of Family and Community Medicine, University of California San Francisco) Using a Supported Decision Making lens in evaluating competence.
- American Bar Association resolution » Urging supported decision-making be identified and fully considered as a less restrictive alternative before guardianship is imposed. Sample arguments for brief opposing conservatorship in California.
Several states have supported decision-making legislation. While legislation is not required to use supported decision-making where you live, it is helpful to be aware that the model has been legally recognized.
- The National Resource Center for Supported Decision-Making » is an excellent resource for current information about legislation throughout the US.
Support for CEDD's Supported Decision Making Project, including development of this webpage,
was provided by the WITH Foundation.