The Right to Make Choices: Self-Determination, Supported Decision-making, and Ending Guardianship

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Introduction 

Freedom to make choices is a human right. Adults without disabilities often take their right to make choices for granted. 

Adults with disabilities cannot take the right to make choices for granted. This is because we do not always get to make our own choices. Sometimes other people take away our right to make choices. 

Often, if anyone thinks the person with a disability cannot make good choices, the person with a disability has their right to make choices taken away. This is because of a series of state laws called guardianship laws. 

Anyone who thinks a person with a disability cannot make good choices can ask a court for guardianship over them. If the court gives the person who asked guardianship over the person with a disability, the person with a disability’s right to make choices is taken away. 

ASAN thinks that this is wrong. Everyone should have the right to make choices. Some people make choices differently than others. Some people get help from a few friends or family members to make choices. Some people show other people what they have chosen through gestures or actions rather than words. But all people, no matter what disability they have or what support needs they have, can make choices. 

Supported decision-making is an idea about the right to make choices. The idea is that everyone needs help to make decisions sometimes. Disabled people might need more help. We might need a lot more help. But, needing help isn’t a good reason to take away someone’s choices. Supported decision making means that even if someone needs a lot of help, they still have the right to make their own choices.

The Autistic Self Advocacy Network is an advocacy organization that fights for the rights of autistic people. This includes the right to make choices. We created this page and its key issue pages to tell you what you need to know to understand the fight for everyone to have the right to choose how they want to live their life.  Each key issue page covers an important subject related to making choices that disability rights advocates need your help with. 

Key Laws 

There is no law on guardianship which applies to the whole U.S. government. Instead, guardianship is almost always in state laws. This means that each state has different rules for guardianship. Some states have laws that make guardianship court hearings short. Some states make the hearings long. Some states make guardianships that take away almost all of your rights. Some states make guardianships that let you keep some of your rights. All guardianships take away many of the rights that allow you to make your own choices. 

36 states have passed a law called the Uniform Adult Guardianship and Protective Proceedings Jurisdiction Act (UAGPPJA). This law makes it easier for the state to transfer your guardianship from one state to another if you move. 

Power of attorney laws are laws which create agreements that let someone else of your choice make decisions for you. Unlike guardianship, you create these agreements, and you can cancel them at any time. They are very helpful when you know you might be very sick or unconscious and won’t be able to make decisions. 

Some states have laws about supported decision-making agreements. In a supported decision-making agreement, you agree to get help making decisions from a person or a group of people you trust. The government agrees to let these people help you. They are then called your supporters. They do not make decisions for you. You can tell them to stop helping you at any time. Sometimes you sign a form with your supporters that lets banks, stores, and hospitals know your agreement exists. You can learn more about supported decision-making agreements by reading the page “Supported Decision-making: Why the Right to Make Choices With Support Matters.” 

The Americans with Disabilities Act (ADA) is a disability rights law that was passed in 1990. The ADA does lots of things. One of the parts of the ADA, Title II, says that public services can’t discriminate against people with disabilities. Lawyers and other legal writers think that taking the right to make choices away from someone may violate Title II of the ADA. 

ASAN Toolkits and Resources on Making Choices

ASAN Position Statements and Work on Making Choices 

ASAN Action Alerts on Making Choices