Introduction
All people, no matter what disability they have or what support needs they have, can 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.
Sometimes, people with disabilities lose the right to make our own choices because we get put under guardianship. Guardianship is a system that allows one person to make decisions about another person’s life. These decisions can include where you live, who your friends are, how you spend your money, and what health care you get.
People with disabilities usually get put under guardianship because other people think we can’t make choices. This is bad. People with disabilities want to keep the right to make our own 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.
ASAN thinks supported decision-making is a good idea. ASAN thinks that we should use supported decision-making instead of guardianship.
This page will tell you about how different kinds of supported decision-making work, about state supported decision-making laws, and about how you can help make supported decision-making work for more people.
How Supported Decision-making Works
In supported decision-making, a person with a disability gets help making choices from people called supporters. Supporters can be anyone you want – your friends, your family, or even your roommate. Supporters do not make choices for you. You make all your own choices. They just help. They might help you:
- Understand the decision
- Think about what you want to do
- Remember important things
- Communicate what your decision is.
For example:
- Wanda is an autistic person. Wanda doesn’t talk. She can point to pictures of things she wants, and she can shake her head to say no. Wanda uses supported decision making.
- Wanda needs to hire a support person.
- Her sister helps her find four different people who want the job.
- Wanda and her sister spend time hanging out with each support person. Her sister asks them questions about things that are important to Wanda, and writes down their answers. After each person leaves, her sister asks Wanda if she liked the person. Wanda chooses a picture that shows how she feels.
- After all four people have visited, Wanda and her sister sit down. Wanda’s sister shows her pictures of each person. She reminds Wanda how Wanda felt about each person. She reminds Wanda how each person answered important questions.
- Then, Wanda picks the picture of the person she wants to work with.
- Wanda’s sister calls that person to tell them that Wanda decided to hire them.
Sometimes there is only a single supporter helping you. Sometimes you have a couple supporters. Sometimes lots of supporters help you. The important thing is that you decide who your supporters are. You also should be able to change or get rid of your supporters at any time.
Supported decision-making can be used to make big decisions and small decisions. You can use supported decision-making to decide what color shirt you will wear. You can also use supported decision-making to figure out whether you want to have a surgery.
Most people use some supported decision-making every single day. It is not used just by people with disabilities. For example:
If a person needed an accountant to help them think about their money, they would be using supported decision-making. The accountant is helping them. The accountant is their supporter. It is normal to need help making some decisions.
Supported decision-making is important to people with disabilities. It helps us think about choices, self-advocate, and make important choices about our lives.
Types of Supported Decision-making
Most supported decision-making happens without you having to go to court or sign any forms. You can get help from people without signing forms!
There are some kinds of supported decision-making which do use forms. Usually, the form is important because it says the government knows you are using supported decision-making. If you are a person with a disability, doctors, banks, and other places you go to may need to see a form before they believe you are making your own decision. The form can also explain that your supporter is allowed to help you.
Every form does something different. Here are some of the forms:
Supported decision-making agreements are written documents that show other people you are using supported decision-making. In a supported decision-making agreement, you agree to get help making decisions from a person or a group of people you trust. These are your supporters. They are named on a form. The government of the state the form is in says that businesses have to allow your supporters to help you. Only a few states have these forms right now.
A power of attorney form gives someone else the right to do things like take care of your money for you or make legal decisions for you. “Attorney” is a word that means “lawyer.” But the person making decisions for you does not have to be a lawyer. You can take this power away at any time. A power of attorney form does not work if a judge decides you cannot make choices anymore, unless it is a durable power of attorney. This kind of form works even if a judge decides that you cannot make choices anymore. Every state has these forms.
A health care power of attorney is the same type of agreement, but specifically about health care. A health care power of attorney puts someone else in charge of your health care decisions if you stop being able to make them while you are sick. But, it is sometimes hard to get rid of the power of attorney while you still are sick. Every state has these forms.
Healthcare advance directives tell people what kind of healthcare you want in advance, in case you later cannot tell people yourself. You can have an advanced directive for physical health or mental health. Mental health advance directives are sometimes called “psychiatric advance directives.” Unlike a power of attorney, doctors and hospitals usually do not have to do what your advance directive says. It just helps them know what you want. Every state has these forms.
An authorized signatory form is a form you can fill out for a bank. It says that a supporter (the authorized signer or authorized signatory) can see your bank account. They can also take money out of your account. This form lets your supporter manage and spend your money, so be careful!
You could also set up your bank account so that both you and your supporter need to agree before money is taken out of your account. This helps you make sure that your supporter isn’t spending your money without telling you. But, it also means that you can’t spend your money without telling your supporter.
You can also ask the bank to create a trust, which allows other people (called trustees) to manage and save money for you so you can use it later. But, you can only use the money for specific reasons. The trust might have to give you permission.
There are lots of different kinds of supported decision making. The National Resource Center for Supported Decision-making is a good place to learn about supported decision-making. You can also learn more about supported decision-making from ASAN’s “Right to Make Choices” toolkit.
Supported Decision-making Laws
Remember, not all supported decision-making needs a form. But if you want to use a supported decision-making agreement form, your state needs to have a law. Otherwise, the form doesn’t exist in your state. Supported decision-making agreements are new, so not every state has laws for them yet. Advocates are working in many states to pass these laws.
So far, nine states that have passed laws about supported decision-making agreements: Texas, Delaware, the District of Columbia, Alaska, Wisconsin, North Dakota, Nevada, and Rhode Island. Four states passed their law in 2019. Your state could be next!
Supported decision-making laws are not all the same. Each law is different from every other law. For example, Texas and North Dakota let anyone be your supporter. In Rhode Island and the District of Columbia, some people can’t be your supporters, like someone who gives you disability support services or someone you have a restraining order against. In the District of Columbia, you can also fill out a supported decision-making agreement form that lets a supporter help you with just your education.
If your state has a supported decision-making law, you can look it up on the National Resource Center for Supported Decision-making’s website, on the “In Your State” section. If it is not there, search the term “ [name of your state in brackets] supported decision-making law,” for example “Texas supported decision-making law.”
ASAN wants more supported decision-making laws to exist. They help people with disabilities make our own choices, instead of having our choices made for us. If you want to work on a law in your state, please contact ASAN so we can help!
ASAN Model Supported Decision-making Legislation
ASAN has written model supported decision-making legislation to help people with disabilities make healthcare decisions. Model legislation means that we wrote an example of what a law should look like. Our model legislation creates forms for supported decision-making agreements. These agreements help people with disabilities let doctor’s offices, hospitals, clinics, and other people who work in healthcare know that another person is helping them. The agreements also help people give their supporters access to their health information. ASAN has shown its model legislation to many U.S. states. Some states have based their laws on ASAN’s model legislation.
How You Can Help
There are a couple different ways you can help more people use supported decision-making.
- You can help get supported decision-making laws passed in your state. There are only nine states with laws, and four of those laws were passed this year. The laws were passed because self-advocates and other advocates in these states fought hard for them. Advocacy makes a real difference. If you want to work on a law in your state, please contact ASAN so we can help!
- You can help us tell stories about how supported decision-making works. Supported decision-making is a new idea, and a lot of people don’t know very much about it. Real life stories can help. Provide ASAN and other advocacy orgs like the National Resource Center with stories about how supported decision-making works in your life and the lives of people you love.
- Spread the word about supported decision-making in your schools and in your communities. A lot of people with disabilities get put under guardianship because our loved ones think there aren’t any other options. Talk to the teachers at your school and the leaders of your community about supported decision-making. Make sure everyone knows that there are lots of ways to support people without guardianship.
Try supported decision-making in your life. The more people use supported decision-making, the more it will be accepted.