Dilip V. Jeste, Graham M. L. Eglit, Barton W. Palmer, Jonathan G. Martinis, Peter Blanck & Elyn R. Saks

Jeste, D., Eglit, G., Palmer, B., Martinis, J., Blanck, P., & Saks, E. (2018). An Overview of Supported Decision in Serious Mental Illnesses, Psychiatry: Interpersonal and Biological Processes, 81(1), 28-40.

Making decisions is central to the exercise of control over one’s wellbeing. Many individuals with serious mental illness (SMI) experience limitations in their decision-making capacity. These individuals have often been placed under legal guardianship and substitute decision makers have been appointed to make decisions on their behalf. More recently, supported decision making (SDM) has emerged as a possible alternative in some cases. SDM involves recruitment of trusted supports to enhance an individual’s capacity in the decision-making process, enabling him or her to retain autonomy in life decisions. This overview examines issues associated with decision-making capacity in SMI, frameworks of substitute decision making and SDM, and emerging empirical research on SDM. Method: This is an overview of the medical and legal literature on decision making capacity and supported decision making for persons with SMI. Results: Many but not all individuals with SMI exhibit decrements in decision-making capacity and skill, in part due to cognitive impairment. There are no published data on rates of substitute decision making/guardianship or SDM for SMI. Only three empirical studies have explored SDM in this population. These studies suggest that SDM is viewed as an acceptable and potentially superior alternative to substitute decision making for patients and their caretakers. Conclusions: SDM is a promising alternative to substitute decision making for persons with SMI. Further empirical research is needed to clarify candidates for SDM, decisions in need of support, selection of supporters, guidelines for the SDM process, integration of SDM with emerging technological platforms, and outcomes of SDM. Recommendations for implementation of and research on SDM for SMI are provided.

Peter Blanck & Jonathan Martinis .

Martinis, J. & Blanck, P.. (2019). Supported Decision-Making: From Justice for Jenny to Justice for All. Something Else Solutions Press.

How would you feel if you weren’t allowed to make decisions about your life? What if someone had the power to tell you where to live, who to spend time with, and what to do? What if that person had control of your money and health care? Isn’t that hard to imagine? Yet, hundreds of thousands of people with disabilities face this situation, every day, when they in a guardianship. When a court decides that a person needs a guardian, it appoints someone to make decisions for that person, usually in all areas of life. While guardianship may be helpful to some people, when people who can make their own decisions are put in guardianship, they can lose their rights and have a worse quality of life. That’s what happened to Jenny Hatch, a young woman with Down syndrome. Before she was put in guardianship, Jenny lived in her own apartment, worked, spent time with friends, and went to a church she chose. After the court ordered her into guardianship, Jenny was put in a group home, against her will, with her cell phone and laptop taken away, cut off from her friends and not allowed to go to her job and church.In this book, Jonathan Martinis and Peter Blanck tell Jenny’s story, including how she lost her rights under guardianship and won them back when she showed the court that she uses Supported Decision-Making (SDM) to make her own decisions with help from people she trusts. They’ll also show you how you can use SDM in your life, with family members, or people you support. They’ll give you practical tips and model language to help you request, receive, and use SDM in the programs and life areas people with disabilities use every day, including Special Education, Vocational Rehabilitation, Person Centered Planning, Health Care, Money Management, and others. As you read this book, you’ll learn that SDM is for almost everyone and almost everyone can use SDM. The authors hope that people with disabilities and their families, friends, and professionals will use this book to help them develop customized SDM plans that protect their rights and empower them to make their own decisions.

Karrie Shogren, Michael Wehmeyer, Jonathan Martinis, Peter Blanck

Karrie Shogren, Michael Wehmeyer, Jonathan Martinis, Peter Blanck. (2019). Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life. Cambridge University Press.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) recognized that people with disabilities should have the right to exercise their legal capacity and identified ‘supported decision-making’ as a means by which people with disabilities can be directly involved in decisions that impact their lives. Offering an overview of its emergence in the disability field and highlighting emerging research, theory, and practice from legal, psychology, education, and health fields, this volume provides a much-needed theoretical and evidence base for supported decision-making. Evidence and strengths-based frameworks for understanding disability, supports, and their roles in promoting supported decision-making are synthesized. The authors describe the application of a social-ecological approach to supported decision-making, and focus on implications for building systems of supports based on current environmental demands. This volume introduces and explains empirical research on critical elements of supported decision-making and the applications of supported decision-making that enhance outcomes, including self-determination and quality of life.

Peter Blanck & Jonathan Martinis

Blanck, P. & Martinis, J. (2019). “The Right to Make Choices”: Supported Decision-Making Activities in the United States, 27-38, in The Will of the Protected Person: Opportunities, Risks and Safeguards (ed. M. Pereña Vicente).

Research shows that self-determination and the right to make life choices are key elements for a meaningful and independent life. Yet, older adults and people with disabilities are often placed in overly broad and restrictive guardianships, denying them their right to make daily life choices about where they live and who they interact with, their finances, and their health care. Supported decision-making (SDM)—where people use trusted friends, family members, and professionals to help them understand the situations and choices they face, so they may make their own decisions—is a means for increasing self-determination by encouraging and empowering people to make decisions about their lives to the maximum extent possible. This article examines the implications of overly broad guardianship and the potential for supported decision-making to address such circumstances. It introduces the National Resource Center for Supported Decision-Making as one means to advance the use of supported decision-making and increase self-determination.