Posted on November 21, 2024

By Angela Rapp Kennedy, CQL Vice President of Training and Learning Initiatives

Supported Decision-Making (SDM) is an alternative to more restrictive forms of decision-making authority, such as full or plenary guardianship. Through SDM, people make their own choices about issues that impact their life, while receiving guidance and assistance from people they trust. Supported Decision-Making is an ever-growing movement which at its heart is the belief that all people have a right for their voice to be heard and regarded when making decisions about their life. It’s about control, choice, community, dignity, and respect. Since this topic is so rich we will devote two Capstone editions to explore the many facets of SDM. 

In Part One of this Capstone series about SDM, 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 Supported Decision-Making Initiatives for the Center for Public Representation. Morgan is a recognized expert in the field, who brings us up to speed about SDM. She provides insight into the current status of the movement at the federal and state-levels, as well as provides multiple links to useful resources. In January 2025, we will publish Part Two to further explore SDM in action, hearing more from Morgan as well as from organizations and people actively engaged with SDM. 

The Quality-of-Life Benefits of Assisted Decision-Making

By Carli Friedman, CQL Director of Research

Please Note: The Personal Outcome Measures® uses ‘assisted decision-making’ as an umbrella term to include both supported decision-making as well as limited guardianship. 

For this analysis I looked at quality of life outcomes from Personal Outcome Measures® interviews with about 6,000 people with disabilities from 2016 to 2023. I found, compared to people with full/plenary guardianship, people with assisted decision-making were significantly more likely to be safe, be free from abuse and neglect, be treated fairly, be respected, use their environments, be connected to natural support networks, have friends, have intimate relationships, decide when to share personal information, have social roles, and choose their personal goals. 

This was true even when I controlled for demographics, including support needs. For example, regardless of their demographics, people with assisted decision-making were 1.8 times more likely to be connected to natural support networks than people with full/plenary guardianship. 

Differences in Outcomes between People with Full/Plenary Guardianship and Assisted Decision-Making

Despite the benefits of assisted decision-making over full/plenary guardianship, here were several places where people with assisted decision-making were less likely to have outcomes present than people with independent decision-making, even when support needs and other demographic factors were controlled. Compared to people with independent decision-making, people with assisted decision-making were 1.5 times less likely to choose where and with whom they lived, 1.3 times less likely to choose where they worked, and 1.6 times less likely to choose their services. 

Differences in Outcomes Between People with Assisted Decision-Making and Independent Decision-Making

While people with assisted decision-making often have better outcomes than those with full/plenary decision-making, there is still room to improve the outcomes of people with assisted decision-making, especially when it comes to increasing person-centered choices. However, it is important to note that full/plenary guardianship is still significantly more common than assisted decision-making – almost twice as many people in our data had full/plenary guardianship than had assisted-decision making – meaning we still need to help create a cultural shift to promote a least restrictive form of decision-making for people with full/plenary guardianship. As the numbers indicate, doing so will significantly improve people’s quality of life! 

Insight Into SDM from Morgan Whitlatch

Let’s turn now to the questions we posed to Morgan Whitlatch, Director of Supported Decision-Making Initiatives, Center for Public Representation.

Would you give us a brief update as to the latest “happenings” with SDM? 

Over the last couple of years, we have seen some interesting developments at the federal level on Supported Decision-Making (SDM) in the United States. For example: 

• Effective July 8, 2024, the U.S. Department of Health and Human Services (HHS) expressly recognized SDM as an example of a reasonable modification in policies, practices, or procedures that may be necessary to avoid unlawful disability-based discrimination under Section 504 of the Rehabilitation Act. This means that the right of a person with a disability to use SDM can be enforced under federal law. The final HHS rulemaking, as well as its preceding proposed rule, also provides useful examples of how SDM can be used in health care and human services. 

• On June 18, 2024, the U.S. Department of Justice (DOJ) Civil Rights Division issued a report finding that the State of Missouri’s reliance on guardianship and conservatorship was contributing to a violation of the Americans with Disabilities Act (ADA) and the unnecessary institutionalization of adults with mental health disabilities in skilled nursing facilities. DOJ’s recommended remedial measures included, among other things, ensuring appropriate diversion and transition from unnecessary guardianship and expanding SDM and training on the use of guardianship and alternatives. This is the first time that SDM has been formally recognized by DOJ as a possible remedy for an ADA violation. 

• In March 2023, federal legislation was introduced that, for the first time, specifically referred to SDM. Called the Guardianship Bill of Rights Act (Senate Bill 1448, 118^th Congress, 1^st Session), this legislation, among other things, provides a federal definition of SDM arrangements and includes plans to develop federal standards surrounding them and guardianship that would cut across States. Since then, other federal legislation has been introduced that would support education initiatives around SDM, including the Alternatives to Guardianship Education Act (Senate Bill 4238 and House Bill 8328, 118^th Congress, 2^nd Session). 

What are the various ways states address SDM? What, in your opinion, is the most effective? 

At least 36 States and the District of Columbia have passed legislation referring to SDM in various ways. Some have focused SDM codification singularly on expressly requiring courts to consider it as a less-restrictive option before appointing a guardian or conservator, which is the approach taken by the current version of the model guardianship law. Other states have passed laws that formally recognize SDM within the context of SDM agreements, transition planning and transfer-of-rights discussions for students with disabilities approaching the age of majority, and auxiliary aid and services to prevent discrimination in access to organ transplantation, among others. 

We are also seeing SDM make its way into court rules, state regulations, and policy. The Supreme Court of Maryland, for example, recently became the first in the country to expressly reference SDM as an accommodation for a person with diminished capacity within its professional rules for attorneys. Idaho and Pennsylvania – two States that have not passed SDM laws – have recognized SDM in judicial guidance for guardianship proceedings. Kentucky has recognized SDM as a least restrictive alternative to state appointment of a guardian through state administrative regulations. The state department of education in Vermont has recognized SDM in policy guidance to educators – again without any change being made to state law. 

While state law, regulation, and policy changes to advance alternatives to guardianship (including SDM) are positive steps forward, more is required to ensure full implementation on the ground for people with disabilities. This was recognized by the National Council on Disability in its 2018 and 2019 reports on guardianship. 

A multi-modal approach is recommended, including ongoing education initiatives for people with disabilities, their families, state agencies, school personnel, judicial and court officers, attorneys, health care professionals, and financial institutions. 

How is SDM used in states that don’t have SDM laws?

State statutory change is not required before SDM can be used by people with disabilities. For example, there are at least 16 States, as well as the District of Columbia, that have court orders and decisions terminating or refusing to order guardianship because of SDM, and many of them were decided without a change first being made to State law.  

One such State is Massachusetts. In January 2015, Cory Carlotto became the first Massachusetts resident to have his guardianship terminated in favor of SDM. Since then, even with no SDM law, the use of SDM has spread in Massachusetts, with additional projects occurring around the State. In a recent year-long project, the Center for Public Representation (CPR) designed and implemented an initiative to make SDM more available to linguistically, ethnically, and culturally diverse communities in Massachusetts. CPR partnered with community leaders and advocacy organizations in the Latinx, Haitian Creole, Cambodian, and other BIPOC communities to pilot trainings on SDM and other alternatives to guardianship that were specifically designed for and vetted by family members of people with intellectual and/or developmental disabilities (IDD) in those impacted communities. People with lived experience, including those with IDD, served as subject matter experts and presenters in this project. As part of this initiative, CPR published a final report summarizing lessons learned and promising practices. 

There are SDM projects underway in other States that have not yet passed SDM legislation, including for example, Kentucky, New Jersey, Pennsylvania, Tennessee, and Vermont. The U.S. Department of Health and Human Services has now recognized SDM as a type of reasonable modification for a person with a disability under federal law. This development can be helpful in enforcing SDM arrangements in States that have not passed a specific state law on the subject. 

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 

Looking Ahead to Part 2 in January 2025

You can see now why we felt the need to devote two editions of the Capstone to this incredibly important topic. Be sure to keep your eyes open for Part Two in January 2025. 

In addition, Morgan has graciously agreed to spend an hour with us on December 11, 2024, in a free webinar Supported Decision-Making: ‘Ask The Expert’ with Morgan K. Whitlatch.