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Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life
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Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life

For decades, increasing numbers of people with intellectual and developmental disabilities have lived their adult lives under legal guardianship. A new book co-authored by University of Kansas and Syracuse University researchers is among the first to explore a fundamentally new way of empowering people with disabilities to retain legal agency while still receiving necessary assistance: supported decision-making.

"Supported Decision-Making: Theory, Research, and Practice to Enhance Self-Determination and Quality of Life" comprehensively examines supported decision-making and how it can be applied in policy and practice for people with intellectual and developmental disabilities. Published by Cambridge University Press, the text was authored by Karrie Shogren, professor and senior scientist and director of the Kansas University Center on Developmental Disabilities; Michael Wehmeyer, Ross and Mariana Beach Distinguished Professor in Special Education and director of the Beach Center on Disability; and Jonathan Martinis and Peter Blanck of the Burton Blatt Institute at Syracuse University, New York.

"Supported decision-making is receiving increased attention in the U.S. and internationally. Essentially, it's all about providing alternative models to plenary guardianship that can enhance self-determination and quality of life," Shogren said. "The wholesale removal of legal rights under traditional plenary guardianship modes can be problematic, and we need alternatives that fully engage people with disabilities in decisions about their lives."

Research has shown that people with disabilities can be effectively supported to engage in decision-making about their education, employment, health care, and legal matters. Further, this can lead to an enhanced quality of life. The new book examines how individuals with disabilities and their families and support providers can use supported decision-making as a framework to enable people with disabilities to be fully engaged in the decision-making process and empower them to identify the people who will support them in that process.

The text summarizes research in supported decision-making and practical applications both within the United States and from other countries. The book highlights ongoing research to develop intervention and assessment strategies to enable support decision-making in practice. The legal section gives an outline of the frameworks to establish supported decision-making as an alternative to legal guardianship. Examples of legislation in various jurisdictions, including Texas and Delaware, are highlighted.

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