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Ending Guardianship: How State Governments Take Away Our Right to Make Choices and How We Can Stop It

Action Center   ➞   Issue Tracker   ➞  The Right to Make Choices  ➞  Ending Guardianship

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 a 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. 

All people, no matter what disability they have or what support needs they have, can make choices. This page will tell you about how guardianship works, guardianship laws, and how you can join the fight for the right to make choices. 

How Guardianship Works

Guardianship is a system that allows one person to make decisions about another person’s life. These decisions can include where you live, your friends, your money, and your health care. 

The person with a disability cannot make their own decisions under guardianship. The guardian makes their decisions. 

A judge in a court must decide to give someone guardianship. The judge can usually give the guardian different kinds of guardianship. Full guardianship means the guardian makes every decision. Limited guardianship means the guardian only makes certain decisions, like how you spend your money. Limited guardianships still take away some of your rights. 

Most guardianships are full guardianships. This is true even in states where there is a law that says the courts should use mostly limited guardianships instead. 

Guardianship is very bad for people with disabilities. There are lots of reasons why: 

  • Under guardianship, people with disabilities can’t make our own choices. Guardianship takes this right away from us. That is wrong.
  • Guardians can make choices that the person with a disability doesn’t like. The person with a disability is stuck with those choices.
  • Guardians can make choices about a person without getting to know them. This is common if the guardian is the state government, a service provider, or a professional guardian. 
  • Abuse can happen under guardianship. For example, a guardian might not let you spend time with friends or family that you love because the guardian thinks you shouldn’t spend time with them. They might force you into an institution or group home. They might make choices about your health care that you do not want.
  • It is very hard to protect yourself from a guardian. Guardians are supposed to respect people with disabilities and treat us well. But when they don’t, it is hard to get away from them. And, it is hard to get a different guardian.
  • It is hard to get out of a guardianship. To stop having a guardian, the court has to find that you can make choices again. The courts do not do this very often. 

ASAN thinks our country should end guardianship and try something else. 

State Guardianship 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. Here are some examples of differences in state laws: 

  • Some states have laws that make guardianship court hearings short. Some states make the hearings long. 
  • Some states make guardianship laws that take away almost all of your rights. Some states make guardianship laws that only take away some of your rights.
  • Some states make guardianships that take away your right to vote. Some states make guardianships that cannot take away your right to vote. 
  • Some states make it so the court needs a lot of reasons to place you under guardianship. Some states make it so the court only needs a few reasons. 
  • Some states call guardians – or certain kinds of guardians –  conservators

People with intellectual disabilities are not the only people who can be put under guardianship. People with mental health disabilities, people with dementia, and people with other disabilities that change how they think can also be put under guardianship.

There are some states with guardianship laws that create special types of guardianship that are only for people with intellectual disabilities. The state’s regular guardianship laws apply to everyone else. Several of these laws are worse than the state’s regular laws. That means that in some states a person with an intellectual disability has fewer rights than someone with a different kind of guardianship. For example, in New York, if a person with an intellectual disability has a guardian, it almost always has to be a full guardianship. 

All guardianships take away someone’s rights. That’s wrong.

Because different states have different laws about guardianship, which state a person with a disability lives in can change their whole life. For example, a person may be put under guardianship because they lived in a state where it was very easy to put someone under guardianship. If the person lived in a different state, they would be able to keep making their own choices. 

36 states – most of them –  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. This makes it less likely that your guardianship will change or stop working when you move. In states that have not passed the UAGPPJA, each court has its own rules about how to change a guardianship from one state to another. 

The way guardianships work is unfair. They make it too easy for people with disabilities to lose almost all their rights. They work differently in different states. And, states do not even follow their own rules sometimes. For example, most guardianship laws make it so you can only put someone under guardianship if nothing else works. But a 2018 report by NCD said that many courts often find that nothing else works even when something else might work (like supported decision-making). The report also found that courts rush through guardianship hearings without really trying to protect peoples’ rights. 

ASAN wants to end all guardianships. There are better ways to help people make choices. 

How to Help Stop Guardianship Laws 

There are a lot of different ways that you can help stop guardianship laws!

  • You can help your state pass a law 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 at any time. Sometimes you sign a form with your supporters that lets banks, stores, and hospitals know your agreement exists. We talk more about supported decision-making agreements in “Supported Decision-making: Why the Right to Make Choices With Support Matters.” 
  • Work in your state to end the use of guardianship laws that discriminate against people with intellectual disabilities. Work with your state officials and state legislature to eliminate laws that create forms of guardianship just for people with intellectual disabilities. These laws are dangerous and discriminatory. 

You can work with ASAN to draw attention to guardianship abuse. Abuse in guardianship happens every single day, in every state. Use social media, emails, and other tools to spread the word about guardianship abuse cases in your state.

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