Supported Decision Making for Disabled Adults in Illinois

Walking Through the Process

Step 1- Understanding Decision-Making Alternative Options

Decision-making alternatives are only necessary after the individual turns 18 years old. Once the individual is 18 years and older, they will be responsible for making their own decisions regarding health, education, finances, etc. and professionals, like doctors, police, and bank personnel, must honor the individual’s voice.  Information can no longer be freely shared with others after the individual turns 18 as it would violate privacy laws, such as HIPPA.  

When considering a decision-making alternative, the most important first step is that the individual and their family understand all options and make the choice that is best for them.  

In order from least to most restrictive for the individual:

1. No Action

2. Supported Decision Making

3. Power of Attorney

4. Partial Guardianship

5. Plenary (Full) Guardianship

Option 1, No Action, is just that.  Since no decision-making action needs to be taken until after the individual turns 18 years old, as they are considered a Minor up until age 18, if the individual desires to keep their adult rights after they turn 18 years old then they legally have that option. No Action means that life as the individual knows it continues and they are considered an adult by the government and are held to the same legal standards as any other adult.  No Action is the least restrictive option because the individual maintains all their rights and makes their own choices regarding daily living.    

Option 2, Supported Decision Making, is another least restrictive option because even with a formal agreement for support from others, the individual maintains all their rights and is the final decision maker.  This is a preferred options for those who want to maintain their rights vs the more restrictive alternatives.

Options 3-5, Powers of Attorney (Financial, Property, and Mental Health), Partial/ Limited Guardianship and Adult Guardianship, span the less restrictive alternative to most restrictive alternative and are covered in other posts (Coming Soon) and it is wise to fully understand all options before moving forward with any option.   

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Back to Option 2, Supported Decision Making. 

It’s natural for someone who is making everyday life decisions to reach out to people they trust to get their feedback, ideas, experience, and guidance.  

For example, when buying a new suit or dress for an event, such as a wedding, a shopper might take a picture of a few options and text it to their friends for their opinion or ask the sales associate their thoughts on fit and style.   The shopper wouldn’t seek the feedback from the local bank teller, their dentist, or a friend who they feel doesn’t have any style.  Those people in their life are important but serve a different purpose with their expertise.   The shopper will ask specific people whom they know will give their honest opinion and want to help them make the best choice.  This group of people the shopper reaches out to is their supported decision-making team.  

A supporter team can be small, 2-3 people, or can be bigger, 5-6+.  Size doesn’t matter, but rather the quality of the team members who are supporting the individual.

Supporters do not have to support the individual in all life areas they identify as wanting support in.  They can choose certain team members for a few areas and others for other areas.

If the individual naturally reaches out to trusted people as part of their decision-making practice, then supported decision-making would formalize how they already live.  If the individual does not have an established group of trusted and reliable people, then they would need to find and vet people to bring into their supported decision-making team as they would be sharing personal information with them, such as their financial affairs and health information.  It would also be in the individuals' best interest to choose people who would be responsive, reflective, and work in good faith.   This additional step shouldn’t deter an individual from choosing this option, but they should know that creating a team who has their best interest in mind may take time and energy. 

Although supported decision-making agreements are not granted through a legal process, like adult guardianship,  it is a formal agreement and should be honored by professionals.  Like other kinds of decision-making supports, the individual should share the agreement with professionals they are seeking services from, like a medical professional or the legal system.  

Since the first three options, No action, Supported decision-making, Power of attorney, do not involve the legal system, they can be set-up and implemented in a much shorter time.  Therefore, as an individual’s life and needs changes they may desire or need to seek different decision-making alternatives.  Meaning, an individual does not need to choose one decision-making alternative and stick with it for the length of their life.  

A supported decision-making agreement can be used in addition to options like no action and power of attorney.  For example, the individual could choose to take no action regarding their education, employment, and relationship areas of life but may want a supported decision-making agreement for finances and health and medical areas.  Another individual may want power of attorney for medical care and supported decision making for education and living. 

Step 2- Choosing Forms & Supportive People

There are a few different supported decision-making agreement forms that an individual can choose from.  Most popular are the ACLU’s form found HERE and the Illinois form found HERE.   A number of states that have formalized SDM as an option include Alaska, Colorado, Delaware, Indiana, Missouri, Nevada, New Hampshire, New York, North Dakota, Rhode Island, Texas, Virginia, Washington, Washington DC, and Wisconsin.  To find other states’ law text and agreements, click HERE.  

Below is a comparison of the contents of a Supported Decision-Making Agreement offered by the ACLU and state of Illinois.  

The Illinois form uses the term Principal to identify the individual and Identified Supporter to name people who are agreeing to support the individual.  

The ACLU form uses the term Decider to identify the individual and Supporters to name the people agreeing to support the individual.  

After choosing the form that is best for the individual, a team of supportive people should be identified.  

Supportive people will be unique to the individual.   Supportive people might include family, extended family, neighbors, field professionals (i.e. related service providers, former paid support, religious or spiritual leaders, peers, coworkers, community members, and more.   It is important to note that Illinois restricts people who are current paid support/employers of the individual from serving as supporters, unless they are immediate family.  For example, if the individual receives SSI and uses those funds to pay a respite provider then that respite provider cannot serve as a supporter on the supported decision-making team.  If an older sibling provides care to the individual and is paid using DHS Home Services Program funding, then they can serve as a supporter because they are family first.  

When developing the team of supportive people, identify which categories that supporter will assist the individual.   The whole team could be tagged to support the individual in all the areas or supporters could be tagged for only certain areas of life.  This flexibility allows the individual to bring together a team that will best support their unique needs.  

After identifying the appropriate form and ideal supporters, reach out to the identified supporters and seek their permission to join a formal supported decision-making agreement team.   Since becoming a supporter is a formal commitment, people may have questions about what this would entail.  There are training materials available to share with people who may potentially join the team.  Those materials can be found HERE, scroll to Supporter Training.  

Once the form has been identified and team secured, move on to Step 3. 

Step 3- Draft & Disseminate

After the appropriate agreement form has been selected and the team identified, the supported decision-making agreement form should be printed or downloaded and completed by the individual.  

If using the Illinois form, a form should be printed and completed for each identified supporter.  For example, if there are 4 supporters the individual should print 4 forms.  

If using the ACLU form, if there are 3 or less supporters then 1 form could include the whole team.  If there are 4 or more supporters, then more forms would need to be printed and completed.  

While written in simple, low-level language, the supported decision-making forms may contain words or phrases that an individual could need support understanding.  Someone the individual trusts and who is familiar with their goals and desires can assist the individual in completing the form to reflect what they want.  

The form will likely take less than 30 minutes to complete, even with time spent explaining the different sections and meanings.   

If using the Illinois form, two witnesses will need to sign.  This form also has the option to pre-determine an end date of the agreement.   

If using the ACLU form, the agreement can be notarized or signed by two witnesses.  If notarized, there is a line that names ‘State of California’ and that can be crossed out and ‘Illinois’ written as a correction.   If using two witnesses, the form is clear to note that witnesses can not be the supporter, individual, or financial monitor, so the individual will need to reach out to other trusted people to serve as witnesses. 

Regardless of whether the form is notarized or signed by witnesses, the form states that the entire agreement should be read aloud. 

The completed form should be shared with supporters, so they are clear about the details of their commitment.  Completed forms can be copied and shared in paper form or scanned and shared digitally.  If using an iPhone, completed papers can be easily scanned using the Notes app and shared as a PDF.   A how-to video can be found HERE.

Step 4- Put Into Practice

With supporters signed on and the agreement completed, it’s ready to be put into practice.   

If using the ACLU form, the individual may have selected a pre-determined schedule for the team to come together to discuss a decision.  If the individual prefers to have a set schedule to meet with their supporters, they will need to increase their awareness of important decisions and develop a habit of gathering/recording the decisions they need to make and check the calendar to be sure the team will meet before the decision needs to be made.   This is a skill, and the individual may or may not need assistance in developing this new skill/habit.  

While the Illinois form does not specify a schedule, it may be helpful to have routine check-ins on the calendar.  If the individual prefers meeting with their supporters on an ‘as-need’ basis, then that type of approach will require the individual to initiate communication and advocate with their supporters.  Again, these are skills, and the individual may or may not need assistance in developing these skills/habits.

The method by which supporters are contacted may be best determined by the individual’s preferred mode of communication.  

Individuals can request assistance from supporters via face-to-face meetings, text, or phone calls.

Agreements do not specify how supporters assist the individual.  They can come together as a team to support as a group or assist in a 1:1 format.   Again, this group vs 1:1 format may be based on the individual's preferences or the type of decision they want support making.  

To be clear, there are various kinds of support that Supporters could show to the individual.

While meeting time is not outlined in the agreement, the supporters and individual may want to follow an outline to ensure that the concern is heard, and all possible choices discussed.  

A possible outline for the conversation may be:

1. Review of supporter duties
2. Background information
3. Decision at hand
4. Feedback from supporters about options
5. Pros/Cons of each option
6. Review of decision, options, and pros/cons for a particular decision
7. Follow-up questions

While this might appear formal, conversation may flow more naturally, with each talk point covered quickly and easily.  If a relaxed and conversational approach offers the individual the support they seek, then less structure may be best.   Choose the meeting structure that ensures the individual is comfortable and best able to receive support.  

How an issue, concern, or question is shared and how team members offer support likely won’t be perfect from the get-go.   Finding a meaningful and effective groove may take some time.  

The individual is not required to share their plan for a specific decision with their supporters.  Since the individual maintains all their rights, they make the final call regarding a decision. Supporters do not need to agree with the individual’s final decision or actions, as the rights remain with the individual.   However, explaining the pros and cons of all decisions may help the individual make the best decision for them.  

The individual may also benefit from a follow-up with supporters after the decision is made and executed, to discuss how it went, celebrate wins, and to reflect.  Again, this is not part of the formal process and should be the choice of the individual.  

If the decision at hand involves the educational or school system, a School Delegation of Rights form for educational decisions is found HERE  and may be helpful. 

A Release of Information for school and educational information can be found HERE.  

A Release of Information for non-school information can be found HERE. 

If the decision at hand involves medical or health decisions, it may be helpful for the individual to share a Letter to My Doctor found HERE.  

This letter was created by The ARC and can be completed by the individual if they desire to be present and feel included in their healthcare conversations.  The letter helps to express the individual’s wishes and how communication should look, as well as informs medical professionals of their supporters and designated responsibilities.  This form can be a pre-cursor to a supported decision-making agreement or a compliment. 

Step 5- Follow-Up

As with any living document, the team of supporters may need to be periodically updated.   

If the individual wants to end an agreement with a supporter and enlist a new supporter, they can.  They simply notify the supporter they would like to end their formal commitment and draft a new agreement and sign on a new supporter.    In addition, a supporter’s commitment may be terminated if there is alleged abuse or neglect against the individual.   

If a supporter would like to end their formal commitment, they can do so by notifying the individual.  

If the individual’s decision-making needs increase and more restrictive options are pursued, like guardianship, or they would no longer like a formal decision-making option, then the supported decision-making agreement can be completely terminated.  This can be done a few different ways- by destroying/shredding the signed agreement, requesting someone else destroy/shred, writing a statement indicating the previous agreement be nullified with a signature and date, or verbally requesting the agreement be revoked in front of two non-supporter witnesses.