1. Understanding SDM
Before you start using supported decision-making (SDM), you should have a clear understanding of what supported decision-making is and what it is not.
Supported decision-making is a way of making decisions that people with disabilities can use. With supported decision-making you work with people you choose to help you understand your choices and make your own decisions about your life. The people who give you help making decisions are called your supporters. You are the decision-maker.
With supported decision-making you are in the driver’s seat. But, when you want to you can get advice or help from your supporters about making decisions.
SDM is not like guardianship. With guardianship, the guardian makes the decisions for you. You can tell your guardian what you would like. But if your guardian disagrees with you, your guardian can make a decision you disagree with. For example, if your guardian thinks you should get surgery but you do not want to get surgery, the guardian can tell your doctor to perform surgery on you even if you do not want it.
With supported decision-making, you get advice and help from your supporters to understand your options, but you make your own decisions. With supported decision-making your supporters do not make decisions for you like a guardian can.
So, what happens if you are using supported decision-making and your supporter does not agree with your decision? Your supporter can tell you that they do not agree, but your supporter cannot make the decision for you.
For example, imagine that you have to decide whether to start seeing a new doctor. You can ask your supporters for help deciding what might be good or bad about switching to a new doctor. Your supporters can help you think about the pros and cons of your decision. Your supporter can even tell you what he or she thinks is the best decision for you. But your supporter can only share his or her opinion — the decision is always up to you. So, if you decide to change doctors and one of your supporters disagrees with that decision, your supporter cannot stop you from changing doctors. It is your choice.
You do not have to go to court or pay a lawyer to start using supported decision-making. To start using supported decision-making you need to choose who you want as a supporter and talk with that person about being a supporter. After you find your supporters, we recommend filling out and signing a Supported Decision-Making Agreement. Filling out the agreement helps make sure everyone understands what supported decision-making will mean for you and how you want it to work. We will explain more about how the agreement works below.
Here are some excellent resources that can help you think more about whether supported decision-making is right for you:
- How to Make a Supported Decision-Making Agreement, American Civil Liberties Union.
This provides worksheets and prompt questions to help you consider whether SDM will work for you.
- The Right to Make Choices: International Laws and Decision-Making by People with Disabilities, Autistic Self Advocacy Network.
This document provides families and people with disabilities an overview of supported decision-making and how it may be able to help you.
- More resources can be found in our Resource Library under the tag SDM 101.
2. Identifying Supporters
If you decide to start using supported decision-making, you should think about who you would like as a supporter. A supporter can be anyone in your life who will be able to help you with making decisions. Supporters can be brothers, sisters, parents, nieces, nephews, past and present caregivers, case managers, nurses, neighbors, or friends.
A supporter should be someone:
- who you trust,
- who knows you well,
- who understands your preferences,
- who know how to communicate with you in a way you can understand, and
- who will be available for a long time in the future to help you.
Try thinking about some of these questions to help figure out who might be a good supporter:
- Who do you go to for help with money?
- Do you bring anyone to doctor’s appointments with you?
- Who are you most comfortable talking with about serious things?
- Who do you trust with your personal information?
- Who knows you very well?
- Who understands how you communicate?
- Who understands your disability and how it affects your life?
- Who are you close to?
- If you were confused about something, who could you talk with?
- Who is available when you need to talk about something?
These questions can help you think about choosing your supporter or supporters. You can get help deciding who to choose as a supporter from anyone you want to ask.
Note about choosing supporters for people in states with SDM laws: Some states have supported decision-making laws. Each of these laws is different. Some of these laws have rules about whether someone who is paid to work with you can be your supporter. If you are living in one of these states and you want to have a paid caregiver as a supporter, you should talk to a lawyer for advice to see what is okay under your state’s laws.
3. Working with Multiple Supporters
You can have as many supporters as you want. Some people have just one supporter. Other people we have worked with have had ten supporters. The right number of supporters is personal to you. You should pick the people who you think would be able to help you make decisions. It does not matter how many people you pick.
If you pick more than one supporter, your supporters do not have to work together. If you want them to work together, you can arrange that they work in a team, but that is up to you and your supporters.
Some people pick one supporter to help them in one part of their life, like health care, and a different supporter to help them in a different part of their life, like relationships. For example, you could have your mom help you with health care decisions and your brother help you with relationship decisions.
Other people decide that they will have all their supporters help with all areas of decisions. So, for example, you could have your mom help with all kinds of decisions and your brother also help with all kinds of decisions. So if you had to make a decision about your health you could talk to either your mom or your brother.
Some people decide that there is one person who they would like to get advice from as a first choice. So you could decide to go to one supporter for every decision. But, if that “first choice” supporter is not available, you could go to a different person. For example, you could go to your mom for all of your decisions as a first choice. But, if you have to decide something (like whether to buy a TV during a sale) and your mom is not available, you could talk with a different supporter about that decision.
You can choose what way of working with supporters works best for you. You should talk together with your supporters about what will be the best way to do things. You can always change your mind if it is not working well or you don’t like something about it.
Below, we will explain what a Supported Decision-Making Agreement is. In your agreement you can explain how you want to work with your supporters (for example, you could explain you have a first choice supporter, or that different supporters will help with different areas of your life).
4. Talking to Your Supporters
Once you have picked your supporters, you should talk to your supporters about supported decision-making. Your supporters should understand what SDM is and how it works.
If you have more than one supporter, it is helpful to talk with them about how supported decision-making will work between all the different supporters. If your supporters do not know each other, it is very important to make sure they all understand how SDM will work for you. Think about these questions:
- Will you have meetings with all of your supporters?
- Will you let all your supporters know about a big decision after you made it?
- Will your supporters talk to each other if you are not there?
- What will you do if your supporters disagree with each other?
- Can your supporters commit to working with you long-term?
If one of your supporters has been a guardian for you before, you should talk together about what will be different about the person’s new role as your supporter instead of your guardian. If you are still under a guardianship but want to try out SDM, we have more information about trying out SDM while under a guardianship here.
5. Drafting an Agreement
We recommend signing a Supported Decision-Making Agreement if you are using SDM. A Supported Decision-Making Agreement is a piece of paper that describes how SDM will work for you and your supporters. You sign the paper and your supporters also sign the paper. The Agreement is personalized for you. It helps to have everything about how you want to use SDM written down because you will know what to expect, your supporters will know what to expect, and there will be less confusion.
Having a written SDM Agreement can also help if you need to explain to other people who do not know you that you are using SDM. Many people, like doctors, bankers, or other people in the community, have not heard of SDM. So having an SDM Agreement can help them understand what is the role of your supporter.
For example, if you go to the bank to open an account, you could choose to bring your supporter and have them ask some questions about your new account so they can give you advice. But the banker may not understand why your supporter is asking questions. You can show the banker your SDM Agreement and that will help explain who your supporter is. But, you never have to show your Agreement to anyone unless you want to — it is your choice.
Center for Public Representation has developed an SDM agreement that has worked well for many people. It has sections that you can change to make it work best for you. We have also provided our SDM agreement in different languages and formats. You can use our agreement or a different SDM agreement if another one is better for you. Some states that have supported decision-making laws have their own agreements that you should use. If you are in a state with an SDM law, you should talk to someone in your state to understand how agreements work there.
6. Making Your SDM Agreement Official
Once you have finished writing your SDM agreement, you can choose to have someone called a notary observe you when you sign it. A notary is someone with a special license from the state who is a witness for people who are signing important documents. The notary can watch you sign your SDM agreement and will check your identification. Then the notary will apply a stamp or seal to your SDM Agreement, which means the Agreement will be “notarized.” Having your Agreement notarized is a way of making your SDM Agreement more official.
We recommend having your agreement notarized if you are in a state that does not have an SDM law. In states where there is no SDM law, many people have never heard of SDM and may be confused when you show them the agreement. If your agreement is notarized it shows that there was a witness there when you signed it and makes it more official. This may help you if you choose to show your SDM agreement to a doctor, a banker, or someone else in the community.
Having your Agreement notarized can also be an empowering experience. You and your supporters may choose to have a ceremony with your notary and celebrate after getting your agreement notarized.
Finding a notary and cost. Many notaries will notarize your document for free. In Massachusetts, the most a notary can charge is $1.25 for a signature. (See Guide to Massachusetts Notaries). You may be able to find a notary for free or low cost at:
- city halls, town halls, or other municipal offices
- law firms
When you go to get SDM agreement notarized, be sure to bring your identification.
For more information about finding a notary public in Massachusetts, please go here, Guide to Massachusetts Notaries.
7. Companions to Your SDM Agreement: health care proxy and power of attorney
There are two other documents we recommend you think about signing if you are using SDM: a health care proxy form and a power of attorney.
Health Care Proxy.
A health care proxy is someone you choose to make health care decisions for you if something happens to you and you cannot make decisions for yourself. To choose your health care proxy, you fill out a form where you write the name of who you pick as your health care proxy. Then, if something happens and you cannot make your own decisions, your health care proxy can temporarily make the decisions for you.
A health care proxy is like a back up plan in case something happens and you are unable to make decisions for yourself.
Health care proxies are for everyone — not just people with disabilities or people using SDM.
Here is an example of how a health care proxy works: Imagine that you were unconscious and needed medication to help you. Because you are unconscious, your doctor could not ask you for your consent to give you the medication. If you had chosen your friend as your health care proxy, your doctor could ask your friend who is your health care proxy for permission to give you the medication.
A health care proxy is only used temporarily. As soon as you are able to make decisions for yourself again, your doctor will ask you for permission or consent to make your own decisions about your health care.
We recommend that everyone who is using supported decision-making fill out a form to choose a health care proxy.
Choosing a health care proxy is important for everyone to do, but it is very important if you are using supported decision-making because it gives you a chance to pick out ahead of time who you would want to make health care decisions for you in an emergency.
Most people who do SDM decide to pick one of their supporters as the health care proxy. This is a natural choice for many people because choosing a health care proxy is a lot like choosing a supporter. Your health care proxy should be someone you trust completely and who knows you very well. But, if there is someone who is not your supporter who you want to be your health care proxy, that is okay too. If you choose someone who is not a supporter to be your health care proxy, it is a good idea to talk about this with the rest of your supporters and make sure they understand who the health care proxy is.
Power of Attorney.
The law lets you choose someone to take care of your finances, business, or legal issues if you are not able to–this is called giving someone “power of attorney.” You only need to worry about giving someone power of attorney if you have a lot of assets or money that are not in a trust.
If you own a house or have a lot of money in the bank, and you are using SDM, you will want to choose someone you trust to give power of attorney to. This means you will fill out paperwork that says who will handle certain financial, business or legal matters for you if something happens and you are not able to make your own decisions. Then, if something happens and you cannot make your own decisions, the person you chose will decide things for you about your financial matters.
Power of attorney can be complicated depending on your personal situation. We strongly recommend you talk to a lawyer about power of attorney if you are doing SDM and think you need might need to give someone power of attorney.
8. Releases of Information
There are laws that prevent people like doctors or schools from sharing personal information about you without your permission. These laws are there to protect your private information and make sure you are in control of what others can learn about you. When you are using SDM, you may want your doctors or your school to share information with some or all of your supporters. For example, if you are making a health care decision, you might want one of your supporters to be able to get information about your health from your doctor. That way, your supporter will have the information he or she needs about your health so you can have a discussion with your supporter about your options.
When you are creating your supported decision-making agreement, you should think about what private information you would like your supporters to have.
What information you want your supporters to have will depend on what kind of help you are getting from a supporter. For example, if your mom is your supporter for health care, you should think about and discuss whether she can have your health care information. But if your brother only helps you make decisions about finances, he does not need permission to get information about your health from your doctors.
Health care release form.
To give your supporters access to your health care information, you should begin by filling out a release under the Health Insurance Portability and Accountability Act (HIPAA). HIPAA is a federal law that prevents your health care providers from sharing information about you. You can fill out a HIPAA release of information form from the Massachusetts Department of Public Health or a HIPPA form from the American Bar Association. However, many health care providers have their own forms that will want you to fill out as well.
Also, different states may have additional laws about your health care information, so there may be special requirements where you live. We recommend talking with a lawyer in your state if you have questions.
School records release form.
If you are a student, there are laws that prevent your school district from sharing your private information without your consent. The Family Educational Rights and Privacy Act (FERPA) is a federal law that prevents a school district from releasing private information about you. If you are a student and want your school to share information with one of your supporters, ask your school district for their form for FERPA release of information.
9. Educating Third Parties
After you have signed your SDM agreement, you should tell the people in your life who need to know about it. Who might need to know about your SDM agreement? Some examples are:
- your health care providers, including your dentist, mental health providers or any other specialists you see regularly
- your bank
- your school
It is up to you to decide who you talk with and tell about your SDM agreement.
Who you share your agreement with will be different for every person. You may want to share a copy of your SDM agreement with people who you will be interacting with regularly, like your doctor or your bank. Whether you tell people about your SDM agreement in advance is up to you.
If you have been under a guardianship in the past before you started using SDM, it is especially important to tell people like your doctors or bank that you are now using supported decision-making and make your own decisions. You may have to educate these people about what supported decision-making is and how it is different from a guardianship. Remember that many people have not heard about SDM so it may be hard for them to understand at first and you may have to explain to them how it works.
10. Changes to your SDM Agreement
If you start using your SDM agreement and something is not working, you can always change your agreement. For example, if one of your supporters moves away you may decide that you would no longer want them as a supporter. If this happens you can change your SDM agreement to take them off or add a new person as a supporter in their place.
You are in charge of your SDM agreement — if you do not like something about it you can change it. If one of your supporters is not listening to you or is trying to make decisions for you, you can always remove them as a supporter. You can do this by telling them they are not your supporter. There may be other reasons you do not want someone as your supporter and that is okay — it is always your choice who your supporters are. Also, if there is someone you want to add as a supporter, you can always add them as a supporter.
If you want to change what areas someone assists you in, you can do that too. So, if your mom was helping you with health care decisions but you decided you also wanted her help with financial decisions, you can ask her to help with that area of your life too.
You are in charge of your supported decision-making agreement and you can make whatever changes you want to. It is your agreement.
If you change who your supporters are or make changes to what areas of your life your supporter helps you with, we recommend making these changes to your supported decision-making agreement. That way it will be written down. If you make a change to your agreement, like crossing off a supporter, we recommend you sign your name next to the change and write the date. That way everyone knows who made the change. You should give new copies of the updated agreement to anyone you want to have a copy.
11. Still Have Questions?