Over the past 30 years, guardianship reform has been spearheaded by the National Guardianship Summits, held in 1988, 2001, and 2011, with the most recent, the Fourth, held just last week. These invitational “consensus conferences” issue recommendations that have been subsequently adopted in law and policy, and are convened by a coalition of influential organizations including the National College of Probate Judges, The National Center for State Courts, the National Guardianship Association, and the National Disability Rights Network.
The theme of the Fourth Summit was Autonomy and Accountability, and not only was SDM explicitly mentioned for the very first time, it was the topic of one of the Summit’s six working groups. Discussion was organized around two commissioned briefing papers—one, SDM: Lessons from Pilot Projects, by SDMNY Director Kris Glen and colleagues from the Center for Public Representation; the other, dealing with potential use of SDM by older people with cognitive decline, co-authored by SDMNY Advisory Council member Rebekah Diller.
For a conference on guardianship reform, the prominence of SDM, drawing largely on SDMNY’s experience and expertise, was exciting and affirming. Among the many recommendations, here paraphrased:
SDM is specifically recognized as a less restrictive alternative to guardianship that should be attempted before guardianship can be imposed;
Federal and state governments should educate a variety of stakeholders, including courts, educators, healthcare professionals, etc. about SDM;
Guardians should be knowledgeable about SDM and use it to move their “wards” to greater autonomy, with the goal of terminating the guardianship and restoring rights;
There should be more pilot projects for diverse populations, aimed at expanding the practice of SDM to other groups including older persons with cognitive decline and people with mental illness;
SDM should be recognized as a reasonable accommodation under the Americans with Disabilities Act (ADA).
We are proud that our work has contributed to the ever-growing recognition that people with intellectual and developmental disabilities have the right to make their own decisions with the supports they choose, and we congratulate the Fourth National Guardianship Summit for recognizing and embracing SDM.