A Rights Movement at the Right Moment: The National Resource Center for Supported Decision-Making

Author:  Peter Blanck, Ph.D., J.D., University Professor, Syracuse University –  Chairman, Burton Blatt Institute

I am honored to present the first guest blog for the National Resource Center for Supported Decision-Making.  I am proud to work with the National Resource Center and wholeheartedly endorse its goal of protecting and advancing the rights of older adults and people with disabilities to make their own choices and determine their paths and directions in life.

I served as an expert witness in the “Justice for Jenny” case, testifying about the importance of choice and self-direction. I highlighted studies showing that people with disabilities who have more autonomous control over their lives have better life outcomes -they live longer and are healthier, are employed at better, inclusive, and higher paying jobs, are more integrated into their communities, and are better able to resist abuse and exploitation. I recommended that Jenny Hatch be given the opportunity to engage in Supported Decision-Making -where people use trusted friends, family members, and professionals to give them the help they want and need to understand the situations and choices the face, so they can make their own decisions—as a less restrictive alternative to guardianship.

In a victory for Jenny and people everywhere, the Court ruled that she has a right to engage in Supported Decision-Making, instead of plenary, permanent guardianship. The case has received national and international attention. I have discussed and heard its implications debated at conferences, real and virtual, across the United States as well as in Europe.

In the wake of Jenny’s victory, Quality Trust for Individuals with Disabilities, who represented Jenny at trial, along with national and international partners and the support of the Administration for Community Living, formed the National Resource Center for Supported Decision-Making. The National Resource Center, in which my organization, the Burton Blatt Institute of Syracuse University, is a partner, will collaborate with aging and disability communities, networks, researchers, professionals and providers to examine and reform law, policy, and practice to make Supported Decision-Making a universally accepted alternative to guardianship and increase self-determination.

The National Resource Center arrives as society has begun to realize that older adults and people with disabilities are people, first and foremost, with the same rights to live, strive, and succeed as everyone else. With the Justice for Jenny decision, Supported Decision-Making has been recognized as an effective and less-restrictive alternative to guardianship, enabling people to make decisions for themselves, with access to the same supports and opportunities to gather information and receive assistance that we all enjoy.

The National Resource Center is poised to help stimulate and develop best practices in Supported Decision-Making through evidence-based research and other methods. Syracuse law professor Nina Kohn and others have said that systematic study is needed to identify effective ways to support the decision-making capabilities and skills of people with disabilities. This is needed to understand the ways in which they may direct their lives to the maximum extent possible.

The National Resource Center partners are uniquely positioned to conduct and promote this examination. They have applied Supported Decision-Making in groundbreaking legal cases, developed evidence-based outcome measures, and successfully advocated for changes in law, policy, and practice to increase self-determination. Working with the input and support of older adults, people with disabilities, families, advocates, professionals, and practitioners, they are poised to lead our long-overdue national conversation about Supported Decision-Making.

I call on all stakeholders – the community of persons with disabilities, their families and friends, advocates, policymakers, professionals and researchers – to join me in welcoming and supporting the commitment and work  of the National Resource Center for Supported Decision-Making.