Creating your best life.

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“You gain a sense of freedom when you have independence. You gain peace of mind. It says a lot when you can pave a path for yourself.”
– A Hub user

Independence topics:

Decision making

We all make hundreds of decisions every day. Some decisions seem small, like what to wear or what to eat for breakfast. Other decisions are more important, such as whether to spend your money on new video games every month or save your money so you can move into an apartment someday.

Think about how you usually make decisions. Do you decide very quickly? Do you have a hard time deciding because there are too many choices or because the decision seems confusing? Do some people in your life want to make your decisions for you? Or maybe someone else, like a guardian, is making most or all of your decisions.

This section covers three levels of decision making: independent decision making, supported decision making and substitute decision making.

You're using independent decision making when you don't talk to other people first — when you make a choice by yourself without help from anyone else. Examples of this type of decision are what movie to watch, what to eat for breakfast, or whether to invite a friend to take a walk.

But no one is independent in every decision they make every day.  Maybe you want to see if a friend agrees about whether a sweater looks good on you. Or sometimes, if you have to make a hard decision — such as whether to keep living with your parents or to get a job and move into an apartment — you might want help from family or professionals. To make the best decisions, you can turn to people you trust to help you understand your options and what good or bad things might happen when you make certain choices.

Supported decision making is a new way to think about how you make decisions. It doesn't matter if the decision is big or small. If you have a hard time deciding — or something doesn't quite make sense or you simply want another opinion — you can get help from your friends, family, special education teachers, social workers, counselors or other people you trust. This is supported decision making.

Everyone needs help sometimes to understand and make a decision. 

  • Start by thinking about a particular decision. It might be something you want to buy, or where you want to live, or whether you want to get a job.
  • Then think about who you want to help you make the decision. It might be a close friend, a family member, your teacher or case manager, or a job coach. These people are your supporters, or your support team.

To make it official, you might want to complete a supported decision making agreement. Here's a sample agreement (Word document). You don't have to do this, but sometimes it helps to have things in writing. You can share the agreement with the people who help you make decisions.

Whether you make a written agreement or not, make sure your supporters understand what you want and how you want them to help you. When you meet with your supporters:

  • Discuss what you want to do. Why is it important to you? What are your fears or worries? What are you good at? What else is important about the decision?
  • Make a list of the different options. Gather information about each option (or ask your supporters to help you) so you know what's possible. Include what you like or dislike about each one.
  • Write down the pros and cons of each option. What you thought was your favorite choice might instead mean you can't do something else that's important to you. Your supporters can help you learn possible consequences of each choice.

If you want your supporters to help you tell others about your choice, ask them to help you with that, too.

Check out these helpful guides for people with disabilities and their families:

  • How to make a supported decision-making agreement (PDF). This guide includes chapters about supported decision making, choices, working with supporters, supported decision making agreements and more. 
  • A self-advocate's guide to supported decision making (PDF). This guide will give you ideas in five different areas of supported decision making: 1) understanding supported decision making as an alternative to guardianship, 2) how to choose your support team, 3) how to organize your ideas about what you'd like to do and what you might need, 4) how to create your own supported decision making agreement, and 5) helpful legal forms and resources. 

To see how people use supported decision making, watch the video below on the right to make choices (06:53).

What guardianship means to me

Substitute decision making is also known as guardianship. A guardian can make many decisions for you, such as where you live, who your doctor will be, what medical treatments you will get and more. A guardian should involve you in decision making, but they have the final authority to make decisions for you.

Many families and professionals believe that people with disabilities can't make good decisions or that they need so much help that it's better to have a guardian appointed by the court. A guardian is appointed when someone files paperwork with the court stating that the person is unable to make decisions or provide for their own needs, and a judge agrees that a guardian is needed. 

Guardianship should be the last resort. Guardianship is a serious arrangement that takes away a person's decision-making rights. Just because you need help doesn't automatically mean you need a guardian. 

It's usually better to work with family members and others you trust to support you in decision making than to take away your right to make choices — and it's always better to try alternatives to guardianship before asking the court to appoint a guardian.   

Common alternatives to guardianship are listed below. 

Supported decision making is a way for people with disabilities to ask trusted family, friends or professionals to help them make decisions — rather than having a guardian make decisions for them. Your supporters can help you understand, make and talk about your choices. You can make a supported decision-making agreement to put it in writing, or you can just talk to your supporters whenever you need some extra help with a decision.

You have the right to privacy. As an adult, your doctors, case manager, teachers, job coach and other professionals aren't allowed to talk about you with your family or anyone else without your permission. Sometimes your family might think this means you need guardianship. This is not true.

If you'd like your family or another trusted person to help you understand your choices or make decisions, you can give them written permission to talk to your doctor, your case manager or other people. This written permission is called a release of information. You can ask for a release of information from your school, your job coach, your bank and your doctor. This will allow the people you trust to keep helping you make important decisions. 

A health care directive is a legal document with two important parts:

  1. Health care instructions. In this part, you write down your preferences about medical treatment. This tells your doctors what you want if you're so sick or hurt that you can't speak for yourself.
  2. Your health care agent. In this part, you write down the name of a person (or people) you trust to make medical decisions for you if you can't make decisions for yourself. If someone thinks you aren't able to make a health care decision, they should ask your agent to make the decision for you — rather than trying to get a guardian appointed for you.

You can fill out just one part of the directive, or both parts. Because the directive is a legal document, you need to have two people watch you sign the document. These people are called witnesses, and they must be different from the people you name in the directive. Or you can find a notary public (a person who has special authority to witness document signatures).

To learn more about health care directives, check out the Arc guide to Minnesota health care directives.

Psychiatric advance directive
A psychiatric advance directive is a special kind of health care directive. You can use it by itself or as part of your general health care directive.

You might want a psychiatric advance directive if you have a mental health condition like depression, bipolar disorder or schizophrenia. If your signs and symptoms get worse, you might need to change your medications or go to the hospital — but the disease makes it hard for you to understand that you need treatment. The psychiatric advance directive tells your doctors what you want them to do for you during a mental health crisis.

For details, check out this practical guide to psychiatric advance directives (PDF).

Sometimes people say that guardians are needed because it's too hard for people with disabilities to understand the programs and services available in Minnesota — such as Medical Assistance (MA) and MA waiver programs, housing options, job options and more. 

Though it's true that waiver programs and residential services can be hard to understand and manage, you can work with your case manager to understand the services and programs that are right for you. You don't need a guardian to do this. You or your supporters can ask your case manager questions if you don't understand something or if you have concerns about a service, service provider or program.

Authorized representative
Many people who have Medical Assistance or waivers feel overwhelmed with the paperwork that it takes to get — and keep — these benefits. You might want to ask an organized case manager, family member or other close contact to be your authorized representative. You will sign a document to name this person as your representative. Then, this person can help you with the paperwork or take care of it on your behalf.

Representative payee
If you get Supplemental Security Income (SSI) and need help paying your bills or saving money, you can ask the Social Security Administration to appoint a representative payee for you. You can give them someone's name, or ask them to appoint someone for you. To learn more, read these FAQs for beneficiaries who have a representative payee.

Power of attorney
If you need help managing your money, you might appoint a person to help you by signing a power of attorney. This person is called an attorney-in-fact, but lots of people just call the person their power of attorney (or POA). Your power of attorney can help you manage the money you earn at work, plus things like your savings, insurance plans and real estate. Your power of attorney can also sign contracts (such as an apartment lease) on your behalf. See common questions and answers about power of attorney

If you'd like a power of attorney, ask a lawyer to help you prepare the document instead of signing one that someone else gives you. You can find a lawyer through any of these organizations:

Authorized signer
If you don't need someone to manage your money, you might simply ask someone you trust to help you review your bank transactions. You can go to the bank together to add the person as an authorized signer on your account. This way, the person can pay your bills for you (or with you) when you need extra help. Or, you might simply give the person permission to look at your banking activity online and let you know if they see something that doesn't look quite right.    

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