By Angela Rapp Kennedy, CQL Quality Enhancement Specialist
In the November 2024 edition of the Capstone Supported Decision-Making: An Update on Trends in the United States we posed a number of questions to Morgan K. Whitlatch, Director of Supported Decision-Making Initiatives for the Center for Public Representation. Morgan is a recognized expert in the field, who brought us up to speed about SDM. She provided insight into the current status of the movement at the federal and state-levels, as well as shared multiple links to useful resources.
Now we’re taking a closer look at SDM in action by continuing our “conversation” with Morgan. We also hear from Penny Johnson, Program Director for the TN Center for Decision-Making Support at The Arc Tennessee. We find out how one organization is making a difference in the lives of people seeking to have their voice heard and regarded when making decisions about their life.
Insight Into SDM From Morgan Whitlatch
Let’s hear more details about the nuts and bolts of SDM from Morgan Whitlatch, Director of Supported Decision-Making Initiatives, Center for Public Representation.
What is an SDM agreement? How does it work?
An SDM agreement memorializes an SDM relationship in writing. That way, third parties – such as doctors, hospitals, banks, schools, service providers, and governmental agencies – know who a person’s supporters are, what decisions the person wants help with, and how the person wants to be helped with decision-making. While having an SDM agreement is not required to use SDM informally, it can help in making it easier for people to enforce the relationship, either under state law or as a reasonable modification for a person’s disability.
There are many examples of SDM agreement forms that exist. At least 20 States and the District of Columbia have adopted SDM agreement laws. These laws vary across states but generally contain requirements for who can serve as a formal supporter, what that formal supporter’s responsibilities are, and what the SDM agreement should look like. These laws also usually limit the liability of third parties who reasonably rely on the agreement, which can help make them more comfortable and willing to honor the agreement.
Supported Decision-Making: ‘Ask The Expert’ with Morgan K. Whitlatch
In this free, Q&A style webinar titled Supported Decision-Making: ‘Ask The Expert’ with Morgan K. Whitlatch, we’re excited to welcome a recognized expert in SDM. Morgan K. Whitlatch will answer your questions about SDM.
View The WebinarWhat does SDM look like in a real-life situation?
There is no “one size fits all” when it comes to SDM. It looks different for different people, who may have different support networks, ways of communicating, strengths and needs, and preferences when it comes to SDM. Some people prefer very formal SDM arrangements, with regular SDM team meetings and written agreement forms. Many people instead use SDM informally by, for example, strategically using release-of-information forms and educating their providers about their decision-making rights. Some people have a strong network of family and friends to be their supporters, and others rely more on professionals to support them.
A common myth about SDM is that it can only be used by people with certain kinds of disabilities. That is not accurate. A person’s ability to use SDM is not determined solely by their IQ score or diagnosis. I have supported people in using SDM who have intellectual disabilities, who have autism, who have psychiatric disabilities, who do not use speech to communicate, or who have dementia or memory loss. When considering whether a guardianship is necessary, SDM should be among the list of possible alternatives discussed first for everybody.
Here is a practical example of SDM in action in the health care context.
- Imagine Michael, who is a person with an intellectual disability and autism. He just turned 18 years old. Michael cannot rely on speech alone to be understood, but, with the help of his support network, he has learned to communicate through behavior and by using simple phrases and gestures to say what he likes and dislikes. He is also learning to communicate through an iPad, using a program to select activities, things he wants, and how he feels.
- Michael has a trusting relationship with his parents, and he wants them to be his supporters. Michael’s parents help explain to other people how he communicates and makes decisions. They explain what Michael’s specific gestures mean to others and make sure he is given time to use his iPad to communicate his choices. They help explain decisions to Michael in plainer language, so he can understand and choose among different options.
- Michael’s parents and other supporters help him prepare for medical appointments and learn about his health conditions and how to manage or get help from others in managing them. They help him set up timers for getting medication and discuss the risks and benefits of medical procedures with him.
- Michael wants his parents to have the medical information they need to help him with decision-making. He signs a “HIPAA” release form by mark, giving his health care providers permission to share information with his parents.
What are some best practices for involving SDM supporters?
Supporters should have a clear understanding of what their role is – and what it is not – in an SDM arrangement. A code of conduct for supporters could include the following key principles:
- Supporters do not make decisions for the person. They provide feedback and advise the person, but it is the person who is the decision-maker.
- Supporters are picked by the person. They are not assigned to the person.
- Supporters are trusted by the person and are part of a relationship of mutual respect.
- Supporters provide support in the way that is directed and preferred by the person and only in the areas of decision-making that are defined by the person.
- Supporters have an ethical obligation to be as accurate as possible about what a person can expect from them and should work with the person to define their role.
- Supporters want the person to make the person’s own decisions and carefully guard against undue influence.
- Supporters are upfront about potential conflicts of interest and discuss ways in which to manage them.
- Supporters have the obligation to help the person learn from decisions.
- Multiple supporters involved in a person’s life can be an important safeguard, as it creates a framework for checks and balances that can protect the person.
There are examples of guides on this topic that have been developed by organizations including I DECIDE Georgia and the Center for Excellence in Supported Decision-Making.
What are the top free resources about SDM you would recommend?
- CPR’s SDM Training and Technical Assistance Center
- National Resource Center for Supported Decision-Making
- Center on Youth Voice, Youth Choice
- I DECIDE Georgia
An Innovative SDM Collaboration
By Penny Johnson, Program Director, TN Center for Decision-Making Support
In 2019, advocates from The Arc Tennessee, The Tennessee Council on Developmental Disabilities, and Disability Rights Tennessee began the collaborative effort of creating a first-of-its-kind resource that would provide easy to understand, accurate information about conservatorship, supported decision-making (SDM), and other decision-making support options for people with disabilities.

From this collaboration was born the Tennessee Center for Decision-Making Support (CDMS). This program of The Arc Tennessee supports individuals with disabilities, family members, and professionals to understand how and when to use the legal documents and best practice SDM tools to support the individual to develop and retain their own decision-making autonomy to the greatest extent. The Charting The LifeCourse tools, a decision-making tool, and a SDM Agreement/Plan are a few examples of those tools.
While in Tennessee SDM is not codified in law, we teach individuals, families, providers, and educators how to incorporate SDM as a primary process for decision-making when appropriate and/or how to incorporate SDM in conjunction with other legal documents. Our role is to get them the information, tools, and support they need to start using SDM, then we are no longer involved unless they come back for more help.
CDMS is changing the life trajectory for many. One example is Aaron’s story. After demonstrating aggressive behaviors in his late teens, Aaron was hospitalized and ultimately resided in a specialized facility in Wisconsin. During this time, he received a complex set of genetic, mental health, intellectual, and developmental diagnoses.
In 2023, Aaron was able to transition to a mental health facility in Murfreesboro, Tennessee, where he spent months in the inpatient unit. With support from Aaron’s Circle of Support, Home and Community Based Services, and his father, Aaron was able to return to living in the community with Reflection Care – a service provider in Tennessee. He has thrived in this environment. Chiquita, Aaron’s primary DSP and house manager at Reflection Care shared, “Giving Aaron information so he has the ability to make positive choices for himself makes me proud to be a part of the process.”

Some of Aaron’s most significant growth came about after working with the Center for Decision-Making Support, using the *LifeCourse Exploring Decision-Making Support tool and other SDM tools. This experience taught Aaron the importance of making decisions for himself. With his team’s support, he now confidently communicates his goals and future plans. He is learning to stand up for himself and others. Aaron said, “It makes me happy to make my own decisions for my health and my life.”
Although not all examples are as remarkable as Aaron’s, the data collected by the Center tells a compelling story. From July 2023 to June 2024, 88% of those contacting the Center for Decision-Making Support for a consultation stated a conservatorship was needed. After the consultation, only 30% still believed a conservatorship was the right choice. These remarkable numbers represent individuals who will retain some level of self-determination. The Center for Decision-Making Support is fulfilling its promise.
(*This tool was developed by the Charting the LifeCourse Nexus (©2020 Curators of the University of Missouri, UMKC IHD, UCEDD))
Supported Decision-Making Stories
Here are a few stories about people and SDM:
Supported Decision-Making Next Steps
If you haven’t already, be sure to read the first part of this series, Supported Decision-Making: An Update on Trends in the United States. In addition, on the CQL website you will find the recording and slide deck from the free webinar Supported Decision-Making: ‘Ask The Expert’ with Morgan K. Whitlatch.
At CQL, we often say that data (information) leads to knowledge and that knowledge should spur you into action. Our desire is that you take all the information gleaned from these two editions of Capstone, the ‘Ask The Expert’ webinar, and all the fabulous resources provided, and take action to support people with disabilities to have an ever increasing say about their life.
Featured Capstone Article
Supported Decision-Making: An Update on Trends in the United States
In this Capstone, we look at data related to decision-making authority, gleaned from the Personal Outcome Measures® (POM). Then, we pose a number of questions to Morgan K. Whitlatch, Director of SDM Initiatives for the Center for Public Representation.
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Supported Decision-Making Part Two: SDM In Action