Impact Feature Issue on Self-Determination and Supported Decision-Making for People with Intellectual, Developmental, and Other Disabilities

In the last decade, there have been growing interest and efforts in Missouri to advance knowledge and use of Supported Decision-Making (SDM) as an alternative to guardianship and a way to enhance individual self-determination and quality of life. This interest first developed through efforts to teach and promote alternatives to guardianship, and through the efforts of the state’s Working Interdisciplinary Network of Guardianship Stakeholders (WINGS) workgroup. In 2018, years of legislative and policy advocacy culminated in comprehensive revisions to Missouri’s guardianship statutes, which included an emphasis on using less-restrictive alternatives to guardianship, including SDM [e.g., MO Ann. Stat § 475.075(13)(4)(2018)].

In that time, several Missouri groups sponsored presentations on SDM that promoted it as a viable alternative to guardianship. However, while many supported the underpinning values, principles, and intended outcomes of SDM, there remained unknowns, concerns, and considerations surrounding the actual practice of SDM that needed to be explored and addressed before being fully promoted in the state. In response to this need, a group of interested individuals, families, and representatives of organizations met and agreed to sponsor a symposium in order to accomplish the following outcomes:

• Come to a common understanding of SDM.
• Clearly outline the benefits, challenges, and concerns associated with the implementation of SDM. 
• Agree on a coordinated path and action steps to advance the implementation of SDM in Missouri while remaining true to its original intent.
• Establish a Missouri Supported Decision-Making Consortium to continue work started at the symposium.

In September of 2018, a group of 133 people – comprised of individuals with disabilities,  family members, supporters, and professionals from the medical, legal, educational, and other fields – came together to address these issues. Symposium organizers invited two nationally-recognized SDM leaders, Jonathan Martinis and Morgan Whitlatch, to facilitate the meeting. 

The symposium began with the group unanimously agreeing to three guiding principles for its present and future discussions and actions: 

1. Recognize and respect that everyone has an equal right to make their own decisions, regardless of their diagnosis or support needs.
2. Be respectful of the various opinions and deeply held beliefs that have led parents and advocates to choose different options for decision-making support, including SDM.
3. Promote the use and development of practices that will provide people in need of support with individualized decision-making assistance in a way that imposes the absolute minimum restriction of rights.

These principles were first identified by Quality Trust for Individuals with Disabilities, the Burton Blatt Institute, and the Council on Quality and Leadership (2015). 

The format of the symposium consisted of the facilitators introducing a discussion topic, followed by facilitated small group discussions and the sharing of findings with the larger group. Discussion topics revolved around strengths and potential for SDM success, setting priorities, and identifying needed next steps. Organizers collected notes from each of the 15 small groups and a CART caption file from the large group discussion. 

Symposium participants left the meeting enlightened and motivated to continue working on implementing SDM in Missouri. Over 100 of those who attended agreed to be part of the new Missouri SDM Consortium, demonstrating the excitement and energy generated by the event and providing a considerable force to move the work forward.

Findings and recommendations from the symposium were summarized and published in a consensus document (Martinis & Whitlatch, 2018). The document also identified next steps for the consortium and state, including reviewing and expanding existing SDM projects and resources, as well as 10 action steps to develop new projects and activities. State organizers shared the consensus document with symposium participants and invited further participation in the consortium.

In April, 2019, over 60 consortium members came together to develop action plans to move SDM forward in Missouri, using the consensus document as the foundation of and guide for their efforts. The 10 action steps identified in the consensus document were combined and collapsed into five manageable focus areas for the meeting, including: 

• SDM Resources and Tools (Includes: Develop and Disseminate Videos)
• Training and Education (Includes: Train Peer Mentors, Continuing Education Requirements, and Developing College/University Credit SDM Courses)
• Expand Outreach and Awareness
• Review and Amend State and Local Policies and Procedures
• Research and Data (Includes: Conduct Research and Collect Data, and Review Research and Data From Other States)

Consortium members formed five small groups to ensure that each had an opportunity to help identify priority action steps in the five focus areas. A facilitator for each focus area rotated to each small group, recording participant priorities. Consortium members then selected their top five priorities for each of the five focus areas. 

Consortium members joined one of five new workgroups dedicated to the focus areas, which were tasked with developing action plans to achieve the five identified priorities for each focus area. The workgroups outlined action steps for the next six months, including specific objectives, outcome measures, and timelines. Facilitators then shared the action plans from each workgroup with the full consortium.  

Work on the five action plans is currently underway. The final plans and products of the consortium will be published when its work is complete. However, no matter the end result, the Missouri SDM Consortium has shown that a group of diverse and committed individuals and organizations can work together in a principled manner to increase knowledge and use of SDM, creating a roadmap for other states to follow.