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

The Saks Institute for Mental Health Law, Policy, and Ethics was founded in 2010 by Elyn Saks as a think tank dedicated to collaborative research among scholars, professionals, consumers, and policymakers. We study issues at the intersection of mental health law and policy while advocating for improved treatment of people with mental illness. Our work aims to stimulate discussion, advance understanding, and develop solutions around the way society approaches mental illness. Our ultimate goal is having direct social impact so people with mental illness are treated with decency and respect, and regard for their civil rights.

Professor Saks contributes first-hand knowledge as an internationally recognized scholar in the field. She was diagnosed with paranoid schizophrenia in her early 20s. She is now tenured as the Orrin B. Evans Distinguished Professor at the USC Gould School of Law. Her memoir, The Center Cannot Hold: My Journey Through Madness, describes her struggles with schizophrenia and her success in crafting a good life for herself in the face of a “grave prognosis,” as her doctors once labeled it. 

The Start of Our Supported Decision-Making Research

In 2016, the Saks Institute began work to develop and implement the first-of-its-kind Supported Decision-Making (SDM) research study focused on people with psychiatric disabilities, specifically people with schizophrenia and bipolar disorder who have experienced psychosis. Our hope is to help participants increase their abilities and opportunities to make their own decisions and direct their own lives. 

We divided our work into phases for this initial study. Phase One focused on identifying best practices in SDM, which has been used by people in the intellectual and developmental disability community. In collaboration with the Burton Blatt Institute at Syracuse University, we completed an environmental scan of over 100 studies, articles, books, chapters, and other material. The bibliography gave us a complete and organized review of the scholarly literature on SDM, which informs our methodology. 

We also interviewed numerous individuals and organizations that have used SDM and/or undertaken SDM projects, including the American Civil Liberties Union, the Autistic Self Advocacy Network, the Center for Public Representation, First in Families North Carolina, the American Bar Association, and others. These interviews helped us learn about their experiences, methodologies, and challenges. Building upon that research, we began creating a new suite of tools, materials, and study protocols. Since this is a first-of-its-kind study, we had no concrete model to follow.

We engaged four research sites for this project to help us meet our project goals – the University of Southern California (USC), University of California Los Angeles (UCLA), University of California San Diego (UCSD), and State University of New York (SUNY) Downstate. Each site is directed by experienced psychiatric researchers who work with participants and collect data. In addition, the Saks Institute hired a research specialist to coordinate data collection and other aspects of this project.

Phase Two involved the development of consumer-centered SDM research tools based on our research and input from mental health consumers, mental health professionals, and subject matter experts. In this phase, we created documents to educate and empower people to implement SDM, and research tools to collect both qualitative and quantitative data to examine the impact on the quality of life, including community integration, of study participants.

In Phase Three, we modified our materials after receiving feedback from stakeholders and experts. We then finalized our study protocol including training, data collection, and interview tools for our four pilot sites. These materials have been captured in binders containing a comprehensive and inclusive collection of implementation and study instruments. We also filmed and edited an 80-minute training video featuring Professor Saks and Dr. Peter Blanck (Chairman of Burton Blatt Institute) conducting model interviews for each of the meetings and practical tips for SDM implementation and interviews. These materials were distributed to the principal investigators at each site, along with recording devices.

Launching the Pilot Study

After this extensive preparation (and a few fits and starts), the pilot study is currently underway and interviews are being conducted and transcribed. Each of our sites will work with 10 individuals and their supporters, producing a research cohort of approximately 80 subjects. We will help them create written SDM plans identifying areas of their lives where they want support making decisions, the type of support they want, who will provide it, and how. Participants (the “decision makers”) will be divided into two comparison groups: 1) individuals who will create SDM plans for any area of life they choose, and 2) individuals who will create SDM plans in three specific areas (health choices, jobs, and money). Because we have two study groups (a “control” group and an “experimental” group), we had to develop two sets of project materials. This required us to predict which tools would be needed, and when, as well as harmonize the differences between the groups. 

As the study participants implement their plans, we will study the impact SDM has on their quality of life, including their community integration and life satisfaction. For this pilot we are concerned with decision-makers only, although we hope their chosen supporters feel actively engaged in the process. In future studies we may study the impact on supporters, as well. After collecting and analyzing the pilot data we plan to review our materials and adjust them based on the practical experience of the decision-makers and interviewers. We also intend to expand the research to include additional sites. 

Lastly, as an extension of this work, we have just engaged with the State of California to begin a multi-county innovation project to test the feasibility of using psychiatric advance directives and other SDM techniques. The aim is to understand and help implement ways for counties to improve access to personal, health, and daily life care, and to improve positive outcomes for consumers at risk.

Conclusion

We look forward to learning from this new project and our SDM pilot study in our effort to promote autonomy and choice for people with mental health disabilities. We are cautiously optimistic that our project will yield important data that will shape SDM research for years to come.